Fibromyalgia: Suffering With The Itch You Can’t Scratch

“Once it is understood that sufferings cannot be compared, then it is possible to speak of different sufferings in the same story, because there is no comparison”, Arthur W. Frank

Here it is… one awful day, living with the winds and rains of Hurricane Hanna and my brain tells my body something unusual is happening. The neurotransmitters are in overdrive. The itching has returned; it is everywhere on my body and nothing relieves it…not the Epsom Salts baths nor the Aveeno Anti-Itch lotion. I can’t get comfortable and my nerve endings are on fire. Only by constant massaging of my body parts do I get some degree of relief. When the hurricane passes us by I know the itching will subside until the next stressful event or a dramatic weather change.

What could possibly be happening to the person with fibromyalgia who cannot find relief from an aggravation as severe as itching that could even cause open wounds, rashes and other skin lesions? Unlike the frustrations of a disease such as eczema, or a fungal infection of ringworm, or an autoimmune disorder of psoriasis, the itching of fibromyalgia does not seem to have a specific label which can be attached to it.

This isn’t one of the more common complaints about living with fibromyalgia. In fact, there are many who do not experience these bouts of itching that can be so debilitating. I have only several bouts a year and they rarely last for more than a day or two. But, when they do my aggravation is extreme. It seems it can occur at any time and I often can’t recognize what brought it on. For many it is a weather change that is imminent or a cold, humid or hot spell. For others it can be after a stressful or exciting occasion. We have to become sleuths and try to document when itching is at its worse!

Our skin is meant to protect us and is always renewing itself. It is not meant to be in a state of irritation to our psyches. The skin is one of our lovely senses, that sense of touch, and it is the largest sensory organ of the body. Think of the soothing words that can be associated with skin: “soft as a baby’s skin”, “soft to the touch”, “skin as smooth as silk”, “soft as a mother’s touch” and so many more that evoke a feeling of love and tenderness. But, there are many cases when the skin itself can become our own enemy.

The skin is the largest sensory organ of the body with more than 4 million receptors which help to identify stimuli like pressure, heat, cold and pain. When one of the sensory receptors is stimulated there is an electrical signal that is taken to a nerve cell that carries nerve impulses to the Central Nervous System (CNS). The CNS responds through the motor neurons ( a nerve cell that carries messages from the brain and spinal cord, to stimulate or contract muscles). The muscles and glands interpret the messages and will either contract or withdraw, or conversely, respond in another way. It seems likely that in fibromyalgia there is a disruption in the neurotransmitters and intense itching occurs, in particular when there are unusual events that the brain interprets as unfamiliar. Often, for me, it is when the weather changes, particularly on rainy, humid or windy days. The itching is usually, but not exclusively, most severe in my hands and feet, although it can often feel like it is all over my body.

Writing about a new theory regarding brains and bodies, Atul Gawande (in the New Yorker Annals of Medicine, 8/27/2008) discusses the newer ideas regarding itching. In the article The Itch he points out how “we experience things that seem physically real but aren’t: sensations of itching that arise from nothing more than itchy thoughts; dreams that can seem indistinguishable from reality; phantom sensations that amputees have in their missing limbs”. (The itching  we experience in fibromyalgia is ‘phantom itching’.) “The more we examine the actual nerve transmissions we receive from the world outside, the more inadequate they seem” .

It seems that the brain takes on a variety of signals to produce sensory experiences from our past, but the question arises about how we can retrain our brain to become more discriminatory? I refer the reader to my link of Diane Jacobs PT who uses a technique of dermoneuromodulation to help downregulate the central and peripheral nervous system. Itching, it seems, is related to perception or better yet, misperception of the brain which must be retrained or reconditioned.

Does this help explain why we sufferers of fibromyalgia often feel the urge to scratch from an itch that does not seem to have any biological rationale for being itchy?  Gawande points out that “Scientists once saw itching as a form of pain. They now believe it to be a different order of sensation”. I cannot say that the fibromyalgia form of itching is painful, but it does seem as though the nervous system (the brain) is sending a message that something unusual is occuring in the environment that is unfamiliar and the sensory input is not of pain, but of itching!  The new theory suggests ways of “careful manipulation of our perception”. Easier said than done! We don’t all have a Diane Jacobs in our neighborhoods. If you find this article by Gawande be prepared to read it several times and even then it is not an easy read, (nor is the work of Jacobs). Furthermore, be aware that after reading The Itch you will begin to itch!:-) Perhaps you are even now beginning to scratch?

What is to be done? Retraining the brain of course. But, that takes an awfully long time and in an acute attack is not very helpful, nor are many of us aware how to do this. In the meantime: cold packs help somewhat; meditation and other relaxing practices to soothe the nervous system before the itching happens; massaging the areas gently when the itching begins; hypoallergenic moisture creams can be somewhat useful and above all documenting when the last attack happened so that we can forstall further frustrating suffering events. For me it should be about watching the weather reports and trying to find ways of ‘brain state conditioning’ (again, not an easy task!) when I know a dramatic weather change is about to happen. This is difficult living as I do in bad weather climate most of the year! Now, here it is… the autumn season is upon us and hurricanes abound. Scratching the invisible itch will not bring any relief I am sad to say!


404 thoughts on “Fibromyalgia: Suffering With The Itch You Can’t Scratch

  1. Kimberly

    Barbara, very interesting article. I itch but not this severely. I mostly attribute my itching to my nerves and just being nervous about something. But, sometimes my itchiness is from being really dry too. I use a lotion from Melaleuca called Renew and I’ve found that it’s very soothing.

  2. Barbara Keddy Post author

    Hi Kimberly: I agree with you that your itching is probably due to ‘your nerves’, my point exactly. It is interesting to me that in the summertime when my itching is at its worse, my skin is usually moist from humidity, not dry. It surely is a peculiar phenomenon. Our brains present us with unusual illusions! I can only hope that many years from now people will wonder at our lack of understanding of the brain (nervous system). In the meantime it isn’t very helpful to those of us struggling with so many challenges. Thanks for your comments! Will try Renew. I think any soothing strokes of applying something to the skin is helpful as the strokes are calming, giving the nervous system the message that there is nothing to be alarmed about!

  3. Katrice

    Very interesting! I had no idea that my itchy fits were related to my fibromyalgia. It happens to me most often in the winter, so I figured it was just dryness. However, it’s an unreasonable, traveling itch that won’t quit.

    I also notice that much more often, I have the sensation that something is crawling on me. There never is, of course, but it’s an undeniable sensation and it drives me nuts. I attribute this to nerves as well.

  4. barbara keddy

    Thanks for your comments Katrice! Hopefully others will benefit from our mutual experiences!
    Living with fibro is like being on a roller coaster, but not as much fun! In fact, no fun at all!

  5. Yvonne Carpenter

    I wish the itching I was having wasn’t so severe…but it is. I was diagnosed with Fibromyalgia in 1990. I recently had a stent placed in an artery that was 98% blocked {September 28th} . I have seen a dermatologist doesn’t but he simply said I had dermatitis. Steroidal creams aren’t working. Aveeno helps for about an hour or so. The itch is a burning itch and is symetrical on both sides of my body. In other words, I don’t “get the itch” on only the inside of the right calf…It will also be on the inside of my left calf. Extremely hot baths or showers help for a while. Sleeping is impossible for more than about 2 hours and this has been going on for about 2 weeks. The first episode was the beginning of December and the second began the end of December and is must worse. If anyone if having these type symtoms do you think it is related to the Fibromyalgia?

  6. Barbara Keddy Post author

    Dear Yvonne: Sometimes I think the itching is as bad as the restless legs which often come at the same time. For me the itching is worse on my feet and usually at night. It often is after a weather change or stress. I know it is caused by an overstimulated nervous sytem, then the guilt or self reproach sets in if it is because of something I’ve done! The weather I can’t change of course. Trying to set aside time each day to deliberately relax, meditate, or stop the cycle reuires so much discipline… trying to train the brain! I wish I had an answer for you. other than massaging the areas. I have not really found much that quiets that surge of nervous system output in the affected areas except touch! Maybe someone out there has some advice we could all use! Barbara

  7. stella o'brien

    I have an itch that sometimes feels prickly and even burns. Could it be from a statin or other medication or from a change in exercise, diet or something like that? I also have Fibromyalgia and lately have had strange symptoms like my eye lids swell. I would love any comments or suggestions. My doctors don’t understand.

  8. Barbara Keddy Post author

    Dear Stella:
    Fibromyalgia is without doubt one of the most mysterious conditions of all times! Symptoms abound that are unique and can make us so confused. Is it serious? How do I explain it to my doctor? Will she/he understand?Am I going crazy?
    Today, for example, I have terrible pains in my upper rib cage and I wonder why since I haven’t done anything unusual. Last week my feet were burning and itching and I could not appease the symptoms. My left eye is not only burning but the lid keeps jumping (this has been going on for three days).
    How are we to deal with these things? We don’t want to ignore anything that might be serious, yet we can’t keep going to the doctor for every little new symptom. My advice is: if it persists have it checked out. If it is temporary, (you can wait a week to see) it will usually subside after a few days.
    Nobody can understand if they haven’t experienced these almost daily annoyances or new pains, but know there are millions of us out there who are living with fibromyalgia and WE do understand!
    Best wishes, Barbara

  9. NECEY


  10. Barbara Keddy Post author

    Thanks Necey: I am doing a great deal of research now on pain and the brain and am convinced that the main clue we have is in understanding neuroplasticity of the brain. Look up some of these readings on line and it stands to reason that in your mother’s case the brain remembers the trauma she had on her leg. But there is hope since it is now widely accepted that we can train the brain. I am currently thinking about a blog on these issues. Give your mother my regards, Barbara

  11. Little Flower

    -Finally, I’m not crazy! I’m just a fibro sufferer, whose pain is well controlled now but itching for the past 3 yrs is driving me up the wall. My back is a mess, my arms are scarred, my hands have scars and my feet, well my feet itch on the bottoms (what a horrible feeling). I have tiny bumps on top of my feet, tiny bumps on arms but my back is the worst. I can’t stop scratching til it bleeds, then I feel better. I’m not into self-mutilation, but this is what it reminds me of.. stress of my spouse passing suddenly, having to move, losing everything – started me off. Now I want it to STOP! The dermatologist prescribed sarna creme for my feet, some other stuff for my back which doesn’t work and my MD prescribed a drug which gave me a hang over the next day (Doxipin). Benadryl sometimes works, but it puts me out.

    I was diagnosed 7 yrs ago by a family physician after I had heart surgery. I lived with pain for over 20 yrs. I’m an insomniac also. Find it hard to fall asleep and harder to wake up. UGH I refuse to keep taking sleeping pills.

    I take Cymbalta 60 mgs and Naproxen 500 mgs once a day. I don’t take Naproxen every day anymore, because the pain seems to have subsided alot. Now I wonder if this itch has replaced the pain? If so, give me the pain, at least that’s controllable now.

  12. Barbara Keddy Post author

    Dear Little Flower: How awful for you. This itching is so troublesome for so many(inlcude me in this!). Our nerve endings sending those awful messages to the brain! Please try reading about brain mapping and consider the ways in which brain maps can be replaced with new ones. I find the new neuroscience very hopeful BUT very difficult to wade through. It is a challenge for us all, this approach to training the brain. I am nowhere near able to do this, but at least beginning to understand the physiological/psychological (brain and pain connection) causes of fibromyalgia.
    Neurontin and Naproxen are the two medications that I take. I have never used Cymbalta but many have said it is helpful. YOU CERTAINLY ARE NOT CRAZY! Best wishes, Barbara

  13. E. Naylor

    Please use the name Itchy Bitchy.

    I am itchy all over. I have FM, but had no idea that itching was connected. Before I found this website, I went to all of the top Med websites and not one listed itchy skin as a symptom of FM. Mine comes and goes, but amitriptyline helps me with both itching and sleep.

  14. barbara keddy

    Dear Itchy Bitchy: This came at a good time as I am itchy as can be tonight! Rainy , damp summer isn’t helping! Love your nickname! 🙂

  15. Jayne Hitlz

    I was told I had fibromyalgia late last winter. I have had a lot of joint pain and stange twitching in my eyes as well as a symptom of numbness in my nose which would come and go and went on for two years. Now the itching has begun. Has been a few months now. Started with the eyelids and now itches in random places. What is interesting is how an itch will develop on one side of my body and many times will occur on the opposite leaving little patches of that remain. Doctor has my on hydroxyline and some prescription itching cream. I have much stress in my life as I am raising a teenage Autistic son. I have noticed if things are stessful my symptoms increase. Also with the changes in the weather they increase. Other symptoms include a chronic dryness on my upper lip that can appear swollen at times. Neve have I had anything like that even in the winter that persists like this. And hot flashes with post menapause can REALLY trigger the itiching. I have found these posts very informative and realize I am not alone . I have to admit all these symptoms are challenging though and wonder what is NEXT to develop.

  16. Jayne Hitlz

    Wow…forgot to mention the other symtom. My response to pain is at a super high level. If I bump into something or someone accidendally steps on my foot…..even with shoes on…it literally brings tears to my eyes. Am guessing it is associated with my nerve endings being out of wack? Thanks.

  17. barbara keddy

    Hi Jayne: Of all the comments I receive it seems that itching is as serious to people as the pain and fatigue. The nervous system which is so hypersensitive (and clever I might add!) can respond to things that in most people (without fibromyalgia) are quite important, such as change in weather. Where I live in Nova Scotia, the weather has already changed. We have been affected within one week by Hurricanes Bill and Danny and the itching has been dreadful! As fall approaches it will only get worse until things settle down for a month or two but fall also brings with it wind and that isn’t much fun to live with either.
    Your life must be very difficult raising an autistic son. Keep on breathing from your diaphragm often and try some form of relaxation if you possibly can. I know it isn’t easy.
    Very best wishes,

  18. Jayne Hitlz

    Thanks you Barbara for your response. I never realized how hypersensitive the nervous system can be. It seems I am learning more and more about fibromyalgia day to day. I can imagine in Nova Scotia the weather is ahead of us here in NH. I also had six hand surgeries and a back surgery over the years…I am nw 50. Feel lots older than that at times with all these symptoms. I always wonder if there is a connection between so many surgeries and nerves….Unfortunately all those hand surgeries did not take away all the symptoms in my joints.I am trying to avoid shoulder decompression surgery which has been reccomended to me by an orthopedist. And also have triggerpoint injections every two months for neck pain and degeneration in that area. I am a myriad of wonderful issues aren’t I? Thanks again for your resonse and take care.

  19. Deb Trobaugh

    I am so happy that I came upon this site! I was diagnosed with Fibro in 1991 & it seems as though I have developed new symtoms every year. Approximately 5 yrs. ago an allergist put me on prescription meds for dermagraphic hives. Any time I carry plastic grocery bags, books, anything that touches my skin I break out in huge red welts that begin to itch immensely. Then a couple of years ago I also started itching in various areas at different times for no reason. Sometimes I need to take something extra such as Benedryl, etc. when I begin itching in different places on my body, especially my feet & at night. I never dreamt it was anything to do with my Fibromyalgia so here I am again with something else because of it(Fibro). Also in the past 2 years I have dry mouth because of my meds & it is affecting my dental health. I’ve always taken care of my teeth, etc. but now have a filling in each of my back molars, have sensitive teeth(I now use Biotene which works great) & this past summer have been to the oral surgeon, had 2 biopsies sent away of gum tissue. The results are that I have 2 different benign tumors caused by my “autoimmune disease”. This was the first time that I was told Fibro is an autoimmune disease. I am still going to the oral surgeon as the “pregnancy tumor” (I’m 54) & I guess it can have something to do with excell Estrogen also, grew back. I had to have it removed again as it started to split my bottom teeth & grow larger. This time it has stayed gone( almost 2 months-yeah) with using a steroid paste every night on that area. The other area has healed nicely. I am also noticing that my eyes seem to be getting dry & I do use premarin estrogen cream for vaginal dryness. I am wondering now if all the dryness is from meds/Fibro? I would love to be able to go back to 1990 when all I took every day was a vitamin & occasional sinus or migraine medicine. Sometimes I feel as though I am a walking pharmacy between prescription meds & supplements. This is the first time I have ever written on any of the Fibromyalgia sites so sorry it’s so long. Thanks. Debbie

  20. Barbara Keddy Post author

    I have found that the itch blog is one of the ones that people look to the most! It is very strange that previous blogs do not often focus on how irritating this symptom can become.
    Right now with the change of seasons it is dreadful for itching. All the readers can relate to your comments, Debbie. Thank you so much for writing. Your story helps others. The word autoimmune ‘Disease’ is not one I would associate with fibro. Rather, by acknowledging that it is an overstimualted nervous system, we are able to take it out of the DISEASE category! My book explains these issues in more detail. Very best wishes to you, Barbara

  21. Terri

    I have itching bouts also. It feels very much like an allergic reaction. I sometimes get bumps and whatever are is affected is red and warm. I usually get this itching when my FM pain is at it’s worst. It also feels like my hormones are going crazy. I am glad to know this is related to my FM. I’m not just crazy.

  22. Barbara Keddy Post author

    Dear Terri: It really is a sad commentary on our condition that everything that happens to our bodies makes us think we are going ‘crazy’. You certainly are not alone in that view and not alone with this itching symptom nor are you crazy. It is our nervous systems out of control. The answer is to practice faithfully how to retrain our brains. That isn’t easy but with diligence we can help ourselves somewhat. Take good care of yourself and know that many others have many of the same symptoms, Barbara

  23. Grammy3x

    I am glad to know that there are others with FM who have the same issues with itching. It’s always good to be validated. Like a previous post, I sometimes itch until it the skin is raw and bleeding. I had a bout of itching about 10 years ago that lasted for about 6 months. I tried all the standard recommendations – fragrance free everything, oatmeal baths, soothing lotions and steriodal creams. All of which produced only temporary relief. Then, one day, it stopped – only to return 6 years later – with a vengence. It was during the time they were having a difficult time diagnosing my FM. My rheumatologist refused to connect the 2 things (FM and itching) and even doubted it was FM, because I don’t have the “11 pain points.” My neurologist finally said, “You hurt all over, all the time, its FM.” He still had no idea about how the itching was related, but prescribed Gabapentin (the grandfather of Lyrica), which virtually took away the itching. Problem was, the pain wasn’t being handled effectively. He switched me to Lyrica, but that only partly handled the itching. So now, I itch 24 x 7, just at a low level. My big issue is every once in a while, I wake up digging, either at a webbing spot between my fingers, or the skin that spans the top of my fingers from the first and second knuckles (feet, too) or in my “saddle area.” That’s where I am now – 3 days of that and counting. It will eventually go away, but I know it will come back and I continue to try to find someone who is interested in helping me solve this problem.

  24. barbara keddy

    Dear Grammy: Look at all these comments on itching! It never ceases to amaze me how many of us have these itching spells with so little help for it and why most ‘experts’ in fibromyalgia know so little about why we have that aggravating symptom. Like you, I sometimes itch so badly I wonder if it will ever stop. Then it does for awhile and as hateful as it is I don’t know when it will come back with a vengeance. I actually take Gabapentin during the day cause Lyrica rattles me if I take it during the day. But at night for sleeping I take Lyrica. I wonder if you could not mix and match like that? I also take an Epsom salts bath at night to calm my nervous system, relax my muscles and stop the itching…it helps somewhat. Good luck! Keep in touch, Barbara

  25. Autumn

    I’m glad I stumbled upon this after a google search for “fibromyalgia and severe itching”. I have had many itchy episodes and severe hive outbreaks in the last few years. The most troubling symptom has been happening to me recently. The inside of my ears started itching uncontrolably!! I have itched them until they scabbed and it started to effect my hearing. I just went to the dr and he gave me special ear drops….no relief yet. I don’t know what’s worse…the daily traveling pain, or the ungodly itching.

  26. barbara keddy

    Dear Autumn: I hope we don’t have to take a vote on which is worse as I wouldn’t know which frustrates me most…the pain or the itching I also wonder if people with fibromyalgia have difficulty in hearing anyway unrelated to the itching? What a miserable conditon this fibro is!Hope the ear drops help! Barbara

  27. Kathryn

    I have just had another bad night sleep!! I woke up at 3am & the pal;ms of my hands & soles of my feet were itching so bad. They were itching on the inside of my skin so no amount of itching would make it stop. I guess just another does of fibromyalgia. I have bouts of this awful prpblem. The most recent one started about a week ago with the usual sore shoulder blade, which has lasted the whole week, then the itching. I have also had very bad heart palpitations which I have read is linked to the disease. It was in about March of this year that this all started. It was my father who said that he has Fibro & that it was probably it. I also get a very sharp pain in my lower left rib… The Dr even did a bone scan. I have not been back as I have no time to sit & wait at Drs surgerys. As there is nothing visible to see who believes you?

  28. Barbara Keddy Post author

    Dear Kathryn: I know just how you feel. The itching especially when the seasons change is so hateful! It seems like nothing helps. There are so many problems with this dis-ease,it is sometimes hard to remember when we felt well. My thoughts are with you during this difficult time!Barbara

  29. Connie

    Hi, I was just recently diagnosed. It was a LONG time coming though! I have had symptoms for years. At least most of you have itching that subsides at times. They had me on Allegra for 3 years due to “allergies”. They have recently put me on Savella, which does help a lot with the pain, but I can no longer take any inti-histamines. No Allegra, no Benedryl, and I itch ALL OF THE TIME. It’s driving me crazy. At least now I know why. I wish more people understood about fibromyalgia, even my Dr. is learning!!! Thank you for this site.

  30. Barbara Keddy Post author

    Hi Connie: I too cannot tolerate Benedryl. It was a dreadful experience taking one; it affected me badly for 24 hours! The itching symptom is so aggravating and you can tell from all the comments that you aren’t alone. Tell your Dr to buy my book and he or she can then understand the theory that I am convinced causes fibro. All Drs and their offices should have a copy. I am not being pompous here but believe I have a theory about cause that is rare to find elsewhere. I am happy you enjoy my site. Best wishes, Barbara

  31. Katie

    Thanks for the article. I have been dealing with this itching for 12 days now and it is not getting better, in fact it is getting worse. My rheumatologist has no idea what is causing it or how to make it stop. He put me on a steroid pack and I am done with day 3 but that doesn’t seem to help. I can’t tolerate Benedryl but the pharmacist recommended decongestant, which seemed to help at first but not any more. No lotion or anything is helping and I feel as though I am going insane. I am 23 and have had fm since I was 17 I usually just have horrible pain I am not used to what feels more like neurologic symptoms but I honestly don’t think I can handle much more of this. Any advice you have would be SO helpful.

  32. barbara keddy

    Dear Katie: I know exactly what you are experiencing. Many of us do. Please read over my later blogs on changing the brain. We have to find our own ways of developing new brain pathways to deal with our numerous symptoms and as young as you are it would be easier for you than an older person. I know this sounds cavalier but truthfully most medicines won’t work unless we understand how to take charge of our own nervous systems. I can sense your intense frustrations and relate to your state of mind. PLEASE READ ALL YOU CAN ABOUT NEUROPLASTICITY! Kind regards, Barbara

  33. colleen

    Hi To all of you. My name is Colleen and I live in Nova Scotia as well. I thought I was alone in the world with all the itching. I itch almost every day, and the worst is down aroud the seat area. I have myself bleeding all the time. Now I have sore spots in my ears, and I was told by my husband that I needed a hearing test, so I booked one for March. How can anyone deal with all the the symptoms and still stay sane? I was diagnosed a couple of years ago but didn’t go to the Dr for about 5 or more years of suffering first. I also have diabetes and am overweight. I also have “twin itchiness” , legs, back arms, etc. My eyes twitch as well. I was just wondering if anyone has experienced seeing tiny little black spots in your eyes as well? I would like to hear from anyone who does. Thanks so much for having the chance to find out I was not alone, Again thanks, Colleen

  34. Barbara Keddy Post author

    Hi Coleen: I have everyone of the symptoms you have, except sore spots in my ears, nor do I bleed from scratching, but i know how it can happen! As for the floaters they are very common as a person ages. I was in Vancouver on holiday several years ago and had a massive attack of floaters (black spots in one eye) which frightened me so much that I ended up at St. Paul’s emergency eye clinic and had many tests. I was told that eventually the brain will get used to them and they aren’t so noticeable. Luckily, they were right! I still have them in direct sunlight and if I am in the snow, but not as many nor as frequent. You are definitely not alone. I hope you read my book and let me know what you think of my theory on what causes fibro and why fewer men than women! Keep in touch re the ear appointment. Did you read my recent blog on hearing loss and fibro? Thanks for you comments, Barbara

  35. chelsea cook

    i am 15 and was diagnoised with fibro. about 8 months ago. i have been experiencing an itch for a few weeks now and it is really frustrating because there is no sign of a rash and no matter how hard i itch it never goes away for my than 30 minutes. Lotion doesnt help nor do baths or showers. when i show my mom how much i am itching and then i look at her face i become sad becuase i will look down and see the slightly bleeding scratches and ill know why she looks at me like this. I itch all over my tummy and it is going to my back now. my ears have been itching also but i have recently peirced my own ears and i thought that was why.i loverd your article. it answered a lot of my questions aloung with my moms. since it has only been nearly a year we are still confused on some of my symptoms. i am only 15 and have more symptoms than most of the older people we know who have fibro. as well. but sites like this releive some of our worrys of seeing the rhumitologist again.
    thanks for your help

  36. chelsea cook

    I am 15 and was diagnoised with fibro. about 8 months ago. i have been experiencing an itch for a few weeks now and it is really frustrating because there is no sign of a rash and no matter how hard i itch it never goes away for my than 30 minutes. Lotion doesnt help nor do baths or showers. when i show my mom how much i am itching and then i look at her face i become sad becuase i will look down and see the slightly bleeding scratches and ill know why she looks at me like this. I itch all over my tummy and it is going to my back now. my ears have been itching also but i have recently peirced my own ears and i thought that was why.i loverd your article. it answered a lot of my questions aloung with my moms. since it has only been nearly a year we are still confused on some of my symptoms. i am only 15 and have more symptoms than most of the older people we know who have fibro. as well. but sites like this releive some of our worrys of seeing the rhumitologist again.
    Thanks for your help< i will use this in the future

  37. Barbara Keddy Post author

    Dear Chelsea: I believe you are the youngest perosn who has ever commented on any of my blogs. If you an afford it please read my book as it may explain things better for you and your mother. I am so sorry that you have this condition at a young age. But because you are so young there is great hope for you! Please learn about meditation if you can and try some mild yoga or exercise movement if you can. Please keep in touch. I will be thinking about you with best wishes. Barbara

  38. Neimut Saeed

    Dear all,
    I’m not diagnosed with Fibromyalgia but I think I do have it. I was referred by my work place to occupational health due to a drop in my performance because of severe migraines and headaches. I have done a lot of resaerch and the penny fianlly dropped. I know that I have FM which manifested itself into these debilitating migraines. I have 12 points of pain out of the 18 they diagnose FM with. The itching I usually get if I walk or exercise more than 10 mins. I feel like my blood is boiling in my veins and I want to dig deep and scratch. The trouble is if I start to scratch then it will be dificult to stop and it will just be agony. I have been referred to a headache clinic but I want to say to the doctors about the FM as in I think I might have it, without offending them and without coming across like I’m actually diagnosing myself and I know better than them. I would apprecaite any suggestions. Thank you and best wishes from Cambridge,UK
    Neimut Saeed

  39. Neimut Saeed

    How can I tell a doctor that I think I might have FM without offending them? As in if I have diagnosed myself already why am I there to see them?
    Best wishes,
    Neimut Saeed

  40. Barbara Keddy Post author

    Dear Neimut: I know the horror stories of people who shop around for a long time trying to find a doctor who will give them a diagnosis they are seeking. It isn’t easy. You might just be right in your diagnosis and perhaps you don’t need a doctor to confirm it for you. I didn’t but after about 10 years I sought and found an internist who specialized in FM and told him I had it and after testing me he agreed! If you need to know it officially then you might need the diagnosis for insurance purposes or sick leave time. However, I think you should really look into finding a doctor who is expert in FM and present your own diagnosis for confirmation, without fear of her/his being offended. It is your life and you have the right to expect good medical advice. Not all the symptoms of FM turn out to be that condition so you must rule out anything else. Ask your doctor for a good referral if she/he does not seem to know much about FM. It is better knowing rather than worrying about something else which could be causing your symptoms! Good luck, Barbara

  41. Neimut Saeed

    Dear Barbara,
    Thanks a lot for your reply as it was really helpful and an eye opener for me. I know now that I have had FM probably since my teenage years but the penny has suddenly dropped for me. I’m really relieved but the ironic thing , in a funny way that I have come up with this diagnosis myself because I have tested myself, I have at least 12 points of pain out of the 18 needed for diagnosis. I fully understand why and how it’s difficult to recognise or even suspect that you might have it because in my case it has manifested itself in severe disabling debilitating headaches. I mean all sorts of headaches. I get so many types but worst of all migraines, so this was my problem. I grew up thinking I’m just a headachy person and I just have to live with them. I’m 50 yrs old and had these headaches since I was at school. The headaches affected my life and the people around me. It affected my production at work I was referred to occupational health. I have been referred to a headache clinic now as I also have neurological symptoms of tingling sensation across my shoulder blades and in my left hand and fingers. I asked my referrer about what to say when I get to the headache clinic and he said to me listen to what they have to say first ( they have given me a 4 weeks headache diary to fill in)and then just go for it. Tell them about it as it might be the first step in your diagnosis and road to recovery( help with it basically not necessarily cure as there isn’t one). I can’t wait to get to my appointment. Something else might be wrong with me so I’m keeping an open mind. One thig that you drew my attntion to is to find a specialistand just tell them about it without tiking that I’ll offend them. I’ll search for a specialist and take it from there. Thank you so much.
    Mrs. Saeed

  42. Barbara Keddy Post author

    Dear Neimut:
    I do hope that you can get to the basis of your headaches.I am not a medical doctor so would never give you advice regarding whether or not you have FM. Certainly tingling of limbs is a common symptom as are headaches and of course the pain. Don’t be afraid to put it out there to your doctors to see what they have to say about it. You must rule out anything else and I know you will have an open mind about other possible causes of these symptoms. Take care and keep in touch. Barbara

  43. Myrna Childress

    I was diagnosed with Fibro. in 1992. My first symptom was itching on the top of my left hand. I was also experiencing other problems, esp. fatigue and leg pain. I just found out last week that the itching that has driven me CRAZY all this time is from the fibro. For me it has no rhyme or reason. Up until a month ago, it had just been my hand that itched so bad that I have scars. The only thing that has ever helped is ice packs. I’ve even stuck my hand in a cooler of ice and left them there for an hour. I’ve been so bad some days that I would have cut my hand off if I had the means and opportunity. The “itch” flares usually last at least two weeks. I’ve had some terrible vacations because of it. Now the itch has traveled to both fore arms. I’m going on two weeks with this, hoping it will end soon. In the past, the flares usually came about two or three times a year and like I said, last at least two weeks. After the severe burn, itch and stab pain goes away, it leaves my skin so sensitive that clothes hurt. I have been getting some relief from Visteril and the ice packs. I have stress in my life, but no more than most people. I have not noticed the weather bringing on a flare. Good Lord somebody please invent something to help us poor itchy souls.

  44. Barbara Keddy Post author

    Dear Myrna: You can see from the comments above that itching is one of the most aggravating of the symptoms we experience. Often it is so disruptive to our lives that we just do not know where to turn. Like you it is most frequently found in my hands (or feet). Hands are usually easier for me as if it is in public and on a foot I have to take off a shoe and it becomes so frustrating I feel like I could dig it forever. I know exactly what you are experiencing and for me it is usually submerging in hot water that helps (somewhat!). There isn’t anything that will help us except taming our nervous systems, unfortunately. Very best wishes, Barbara

  45. Kathy Dixon

    I am also a fibro sufferer. The itching is unbearable at times. My doctor prescribed atarax which usually puts me out in 30 minutes. I know see why he gave it to me. If you are in a coma you have no idea you are itching. I take 300 mg of lyrica a day. This helps with the pain but not the horrid itching. Nothing and I mean nothing helps. It is all over it seems like im being poked on every inch of my body with pins. Everyone thinks I am crazy and now it is driving me crazy. I also have other weird maladies. I am a 49 year of now with acne. What is up with that! I have IBS and Acid reflux from hell. I still have days I hurt so bad I can’t move. I have to have both knees replaced so rightnow I can’t excercise to help with the fibro. I am scared to death of the knee surgery. Sorry Im a pain wimp!

  46. Barbara Keddy Post author

    Dear Kathy: YOU ARE NOT, REPEAT, NOT A PAIN WIMP! All the things you mention are very common and enough to drive us all to distraction! Please be more kind to yourself. This itching business is terrible. I am so sorry you need knee replacements. Surgery of any kind sends our nervous systems into overdrive. I had a cataract removed this week and just the stress of that although considered minor sent me into orbit! You are not alone! It is so difficult to remember to breathe, do easy movements, relax, when we are in such pain and just want the pain (and other symptoms) to stop! Very best wishes with the surgery, Kind regards, Barbara

  47. Holly

    I have just stopped itching and I have a roaring headache. The itching seems to follow a pattern, eventually reaching every square inch of my body. I call it an itch, but it also feels like a jab from a needle from the inside out (How can a doctor possibly understand what that means?) or how I imagine it would feel to be covered in fire ants. It is so difficult to describe, even to family and friends who can’t understand why at the last minute, I have to cancel because I “itch.” There have been nights I’ve been awakened by unrelenting, agonizing itching, burning, stinging pain and have spent up to four hours clawing myself. Most of those times, I ended up calling in sick the next day. I have gone to dermatologists, internists, neurologists and even psychiatrists trying desperately to find out how to stop this. When my mother was being treated for breast cancer, she even gave me an oxycontin. The itching stopped for four hours, but when it wore off, the itching came back. It was as if it really was programmed, and I could delay it, but eventually it was going to happen. I have considered even going to the emergency room, but I know they would have no idea what was happening to me and start with Benedryl, all the while, there I sit in front of God knows who, clawing myself to pieces. All I want is either a morphine drip or to be knocked unconscious. That is how bad it has become. I have had episodes start while I’m driving on a freeway in heavy traffic. I have even stopped working for the time being. For many years I worked in cosmetic sales, but because of this, I changed jobs to work for my father because I lived very close by and I could have flexible hours and have no problems leaving if I began to feel an attack coming on. Standing in a smock behind the cosmetics counter scratching all over is not going to get you customers. I was diagnosed with fibromyalgia in 1997, and have tried all sorts of treatments. It seems as though the symptoms of fibromyalgia are as varied as the treatments. You must keep exploring and experimenting until you find the perfect combination for your specific needs. I got some relief with acupuncture, but it got quite expensive and when I stopped, it all came back. I can handle the fatigue, the joint and muscle pain and the strange headaches that feel like a stab with an ice pick, but the itching thing is more than I can stand. One diagnosis one doctor thought of was Reflex Sympathetic Dystrophy. He prescribed Suboxone, which in itself is a quite serious medication, and warned me about the funny looks I might get at the pharmacy. I had a serious bout while visiting my aunt, who gave me a xanax, which seemed to ease it a bit, but I never really know because some bouts are just worse than others. Another thing that seems to go along with this, is a headache which comes after the itching stops, and then I need to sleep. Sometimes, an episode of this insane itching can occupy and ruin an entire day. Is this what I have to look forward to for the rest of my life? Will these bouts of excruciating pain become more frequent? I am really intruiged by the idea that I can rebuild my “brain maps.” It makes perfect sense, going to the source of the problem. If it is truly possible, no matter how hard it is, or how long it takes, it would make such a huge difference in my quality of life.

  48. Barbara Keddy Post author

    Hi! Is there anything worse than that itch you just can’t stop? Mine is generally on the feet which makes it more awkward when in public! But also worse at night. So many comments on this darn itching that it boggles my mind!Taking all these heavy medications worries me so I try to practice meditation and anti stress relaxation exercises to calm my nervous system!
    Still, that often does always work and I resort to scratching. I find it is worse in weather changes, and of course stress!
    We need to build different maps in our brains, for sure! Best wishes, Barbara

  49. Jill

    Try cutting out all Gluten, Dairy, sugar and caffeine plus other common allergy triggers like: peanuts, shellfish, etc. I have Celiac in addition to my Fibromyalgia and other autoimmune conditions. I slipped last week and ate something containing gluten… sick for 5 days plus it start my rash, itching, etc. One of the best drugs is Gabapentin because it calms down the nervous system which is in overdrive. I also like Gabapentin because it is an old, proven drug vs. the newer drugs like Lyrica (which makes my eye so blurry at a tiny dose that I can’t even get to the therapeutic dosage). The added plus of the older drugs is that the cost less!

  50. Barbara Keddy Post author

    Hi Jill: Thanks for your comments. I quote here the well known Australian nutritionist, Joanne Beer who writes: “I think it’s a trendy fad and people are jumping on the bandwagon. I’ve had many people coming in lately and saying “Oh I’m gluten-intolerant” and in 90percent of the cases they are not”. So, I don’t want to alarm the fibromyalgia readers to think that we are all gluten-intolerant. Since you DO have Celiac disease and have been properly diagnosed by tests and your physician, you are among those who definitely are intolerant. Just as the anti carb diets, the high protein diets and others can be harmful to people, I would advise moderation in all that we eat and to vary our foods periodically to help with metabolism. However, I do agree that sugar and caffeine are very difficult on those of us with highly and easily aroused nervous systems (for everyone , in fact!).
    I was delighted to see you advise Gabapentin as a good medication as I too have found that a baby dose of it is really helpful for me while Lyrica was certainly not helpful! Others may find the opposite though so it is a matter of testing our own individual bodies.
    I really appreciated that you took the time to make these suggestions.
    Regards, Barbara

  51. Tamara Burk

    Hi everyone: I was so glad to have run across this conversation. I thought I was going crazy. I was mis-diagnosed for awhile. I was told I had neuropathy then fibromyalgia. I have a pain management doctor who says all my pain comes from 3 bulging discs in my lower back and one in my neck. I also have scoliosis at 21 degrees. I have been taking Lyrica for over a month now at 75 mg twice daily, but it doesn’t help the itching. It appears to flare up when I am anxious or nervous. I tried taking 1/2 a xanax when the itching starts and it seems to calm things down. That suggests to me that I am definitely bringing the itching on myself. I don’t care for Lyrica and its long list of side effects. I will be asking my doctor about a small dose of Gabapentin. That may be a better alternative. Is it addictive? Thanks, Tamara

  52. Barbara Keddy Post author

    Gabapentin is not addictive and I find that a baby dose of 100mgs three times a day is very helpful for me . Others do not find it helps much. Lyrica did not quite do it for me but others think it is great, so it is up to the individual. You have to become your own body expert and it is trail and error:-( Good luck, Barbara

  53. Leigh

    I ABHOR the itching! Mine is everywhere and nowhere all at once. Like pin pricks all over my body. It’s impossible to scratch or relieve except through (I’ve found) a big dose of tranquilizer. And that doesn’t always work, and then I come up short on pills before it is allowable to refill. I’ve struggled with fibro and chronic fatigue for 10 years. I take ~ 20 prescriptions, hormones and supplements daily. The meds don’t always work. And sometimes it is all just too much to bear and I start thinking of contacting Dr. Kevorkian.

    I’ve noticed the itching sometimes comes on with an intake of foods or substances that I’m allergic to. Other times there is no imaginable explanation. What is wrong with our CNS’s??

    This is a very lonely and debilitating disease/syndrome; hard for people to understand, including many many doctors and of course the psychiatric community as well. It’s all in our heads, right? It is a disease for hysterical women. So, until enough males get it, it won’t be taken seriously. It will be mostly up to us extremely STRONG, long-suffering, and very stoic women to learn to cope and help ourselves. How do we train our brains to stop being so sensitive to every little thing?

    What is/are your opinion(s) on using medical marijuana to ease itching and pain?

  54. KC

    I’m so glad I came across this info. I thought I was going crazy with my itching symptoms. I’ve had fibromyalgia for 12 years and have it fairly well managed so when this new symptom began to happen much more frequently I wondered if it was yet another fibro-connected issue. My skin in not dry at all but I too often feel like there are literally things crawling on me, when of course there is nothing there! I will monitor the nerve-induced theory as well as possible weather-related, I live in So. Cal. and lately we’ve gone from terrential rainstorms to 90 degree temps within a day or two. That could be the trigger. Thanks for sharing all this info. so I can better try to figure out how to manage yet another symptom and move forward 🙂

  55. Shirley Smith

    I am going nuts with the itching. It just started out of no where about 5 months ago and then stopped. Now it is back and I can find no relief. Doctors have prescribed antihistamines but to no avail and actually make it worse. Any suggestions from someone would be great. I have tried more neurotin, but does not seem to help.

  56. Barbara Keddy Post author

    Shirley, I know what you mean. It seems that anything out of the ordinary can start various parts of the body itching. Also at the same time I can feel my nervous system being in overdrive. It takes so much patience, quiet time, meditation and relaxation for it to ease as nothing else will work. Take good care and best wishes, Barbara

  57. Kim

    I have had fibro for around 13 years. Last spring I cut my antidepressant down from 150 mg to 50 mg. because it caused a lot of weight gain and I couldn’t lose it. About a month later the itching started–last June. It just about drove me mad all summer, fall and then in December I tried increasing the Anti-D to 75mg. That caused a definite improvement, but it is far from gone. It’s a bone deep itch and much of it feels like “needle picks” and I also had/have the creeping “buggy” feeling. My B12 levels were low and so were my iron so I started taking iron and a high potency under-the-tongue B12 and even though I didn’t think it would help, it did take the creepy feeling away or make it much better. Warm, humid weather definitely makes it worse. We are now starting summer weather and it’s seems to be coming back. I’ve also been under terrible stress, that could be a factor. But I hope other women (and men) with fibro will find this and know that they are not losing their minds, they do not have “cooties” it is the fibro. I only wish I could tell them how to get better, I don’t know. Take high potency B vitamins they are good for the nervous system and give the vitamins time, they don’t help overnight. Omega 3 really seems to help with pain and energy but it doesn’t seem to do the itching any good. I was taking it when I first started itching and at first thought that was the cause. I wasn’t. When I have pain the itching isn’t as bad, when the pain seems to go away for a while the itching starts. It seems with this disease you can’t be left without some kind of suffering. Good luck with the summer coming, if anyone finds anything that works please let me know. kimberlylarae [at] gmail [dot] com

  58. Barbara Keddy Post author

    Hi Kim: The itching seems to b e worse when seasons change; not sure why??? I am happy you are cutting down on the anti-depressants. The certainly do play havoc with the weight, which makes a person more depressed! I agree that Vit B seems to help the nervous system but then so does relaxation and meditation and low impat ,slow exercises. Good luck with finding some relief from itching! Barbara

  59. Brenda

    I am so glad to come across these articles. I have been climbing the wall with this itch for years. Although it comes and goes it will almost drive you nuts and nothing seems to help. I thought I was loosing my mind. I was diagnosed with fibro this last year. I suspect I have had it for a long time and it was misdiagnosed. I also am diabetic. With the two alone I just want to retreat and throw my hands up. I also have osteoarthritis so I have to take pain meds for that. At least I know where to start now for help. Good luck to all of you going through the same thing and thank God for this site. It helps just knowing that I am not alone.

  60. Barbara Keddy Post author

    Dear Brenda: I too am happy you found this site and I can relate to your agony of itching, particularly after a bad night of itching! I hope that my book will help you put all this is perspective as it is the beginning of understanding about the cause of this demon. Thank you for your compliments! Regards, Barbara

  61. Janice Young

    Hi fellow sufferer’s with the fibromyalgia itch. I agree that this symptom is one of the worst ones. I have rubbed, scratched(until I’ve bled), taken showers, used creams, etc, and nothing helps. It seems to me that the medical population needs to pay more attention to this. My pain doctor has had me on Lyrica for several months. The main difference I have found is that I sleep a little better through the night. However, the doctor would like me to increase the lyrica to 2 x’s/day. I am already very drousy during the day and I’m afraid the increase will keep me dosing on the couch all day. Has anyone else had this affect with Lyrica, and if so, how do you deal with it. I would like to be productive, but don’t feel that that can be when I increase the medication. H-E-L-P, anyone?

  62. Barbara Keddy Post author

    I do wish there was an easy solution. I take epsom salts baths, massage the areas that itch, try to meditate often and in short do all I can to reduce the stimulation to the nervous system. It can be THE most aggravating symptoms of all sometimes! Good luck, Barbara

  63. Alandria Johnson

    I am also happy to have found this article. Apparently, I’ve had fibromyalgia all my life, but was not diagnosed until about 3 years ago when it caused me to be completely bed-ridden for days. “The ITCH” is one of the most evil things about fibromyalgia, aside from fatigue!!! I didn’t realize that fibro could be the cause of my damaging itch for a while.

    I am Black, and had long hair. When my fibro started getting extremely bad, I also developed a terrible itching in my scalp. It became so bad in the center of my head that I scratched my hair shorter in the center of my head. I’ve tried so much over the past few years to stop the itch! Scalpicin, dandruff shampoos, frequent conditionings, hair greases, anxiety meds, Gabapentin (up to 400mg)…. I even cut off my hair and went natural- no chemicals in my hair!!! Now, a few years later, my hair has grown back, but because of the itch, I only have patches of long hair on the edges of my head. While I do itch in other parts of my body for absolutely no reason, my scalp seems to bear the brunt of the itching. I even have sore & bumps on my scalp from all the scratching. It’s as if the hair follicles themselves are irritated. Sweating and stress tend to lead to quick onsets of intense itching. It’s actually painful at times, because it seems to sting. Then, just as quickly as it came, it can go. I am so tired of wearing baseball caps and scarves to cover my hair. Not to mention how embarrasing my children find my hair and lack of style.

    While my itching is out of control, my fibromyalgia isn’t well controlled either. I’m trying to will myself to eat a better diet, and avoid foods that I’ve been told aggrevate fibromyalgia. However, I find it hard to resist Red Bull (caffeine) when fatigue sets in. I have a very demanding & stressful life, and now that I am without my husband, I have no help with my fatigue. So, I guess I will be cutting my hair off again, and learning how to cope with the dreaded ITCH!!!

  64. Barbara Keddy Post author

    Hi Alandria: I can relate completely with you. My own hair has thinned out in that same area. Those nerve endings!?*&^$#! I must admit that the majority of my itching areas are on my feet though. Drives me crazy as nothing but constant rubbing will subside the itch. Keep in touch and let me know what you think of the book and what other Black women have to say about fibro. Kind regards, Barbara

  65. Mechelle

    I feel so much better reading all of your stories. I’ve also had the itching and eventually went to the ER because it was absolutely unbearable. I was itching so bad that I didn’t realize until later that I had dug so deep into my skin I had bruises over my back and arms. My feet itched like crazy and it felt like i was being stuck by a million needles. At times it just felt like my whole body was on fire. I remember it starting with my neck, then my hands and feet. It was mostly in my upper and lower body. The most awful feeling ever. Of course the ER doc said I had an allergic reaction to something, shot me up with some drugs and sent me home. It happens now and again, and I just deal with it, as I’ve learned to deal with all the other quirky things about fibromyalgia. It just seems like every other month, something else happens. Aside from the pain and the tiredness.

  66. Barbara Keddy Post author

    Hi Mechelle: This itching symptoms is one which seems to affect most of us with fibro. For me it is worse on my feet, especially the arches and nothing seems to make it better, except constant rubbing. That nervous system of ours is a hyperactive animal that does not want to quiet down!Only by mindfulness meditation will we be able to obtain some degree of release! Regards, Barbara

  67. Kristian

    Hello everyone! I’m so grateful to run across ya’ll talkin about the itching and ‘creepy crawly’ feelin! I haven’t been diagnosed with fibro yet(I see the neurologist next wed) but I have several symptoms such as itching, insomnia, migraines, my feet hurt so bad at times I can barely stand or even lay them on the bed at night! I mix up my words at times and my skin hurts to touch at times…even when I shave my legs( which has been my excuse not to…lol). But I feel like I’m going crazy!!! I hurt all the time and I hope the Dr. Can give me an answer, I’ve been dealing with this for 8 months and my reg Dr didn’t know what else to do once the MRI came back neg for MS. Okay…I think I’m done whining now..just need to tell someone other than my family, goodnite…maybe, haha!!

  68. Barbara Keddy Post author

    Hi Kristian: I hope you got some answers from your doctor soon as not knowing about what ails you can be so frustrating! Keep us informed! regards, Barbara

  69. Sandra

    I am so glad I found this discussion today. I, too, have fibro, something I suspect I have lived with my entire life. I was always told that my symptom and pains were in my head. About 3 years ago I began to connect the dots and pretty much self-diagnosed. I since haven had my self-diagnosis confirmed by 3 different doctors. But no one really has any good treatments. When I have an acute flair, my entire back goes into spasms which not only hurt in and of themselves but make me feel sick to my stomach even though my stomach is perfectly fine. Then there’s the acute itching, for apparently no reason. No rash, no bites, and it moves around my body unpredictably. I get that same sensation that someone else mentioned of a thousand little pin pricks and a creepy crawly feeling. Seems to worsen when it’s humid and I sweat. I started with the severe itches after having my gallbladder out in 2002. I began to notice uncontrollable itchiness especially on my torso and breasts. The past few weeks I developed unbelievable itchiness in my, um, private parts, in the skin. Vagisil helped until it moved to the anal area and then expanded to my thighs and lower torso. Nothing helps for more than a few minutes anymore. I’m in agony and the gynecologist I called can’t see me until the end of the month. I don’t know how I will survive this. Seriously. Any suggestions would be most gratefully accepted. Thanks for being here.

  70. Barbara Keddy Post author

    Oh Sandra: I know exactly what you are experiencing. For me it becomes even worse with season changes so I dread the autumn. I take hot epsom salts baths regularly and rub myself with moisture cream that does not have a fragrance. Remember to meditate every day, relax as much as possible, avoid too much stimulation and breathe slowly. Mild exercise can help even though you may not be able to tolerate it at first. Best wishes though all of this, Barbara

  71. Leticia Martinez

    Thank you so much for everyone’s posting on this website. I have battled with fibro for the last two years. Some days the itching is so bad that I have as my son likes to put it, “sprung leaks” from scratching so bad. The scabs on my arms make me look like the meth addict that picks the “no see ’em’s” off their arms, legs, hands and feet. This is the first time I am publicly speaking about my fibro because it is so painful to me. I used to be the strongest female (physically) that I know. I have been reduced to having difficulty in picking up just about anything that weighs one pound and up. I think my fibro was brought upon after a slight fall down my patio stairs (the last two only). After that, everything just went out of wack! Thank you all for letting me know that I am not crazy with all of my itching. Sometimes the itching on my back just makes me want to scream!!! Thanks again for all of your postings! May God Bless you all!

  72. Barbara Keddy Post author

    Oh Leticia: I understand where you are coming from. It is so difficult ‘coming out’ to other people about fibromyalgia. We are so afraid that others will think we are malingering. But, there are so many thousands of us out there and we have to speak out. You were brave to write a comment. Thank you, Barbara

  73. Eileen hurley

    After a long bout of scratching myself so hard that I have made myself bleed, the itching is still there. It moves at will, with absolutely no relief. It drives me crazy, and is there all the time. I wake up so itchy it is unbelievable.

    Fibromyalgia is a hard cross to bear by itself, but I am also diagnosed with Arnold chiari malformation, have low spinal fluid and cluster headaches (called suicide headaches). I cannot escape pain at all and on top of it all have suffered this awful itching for a year now.

    It is nice to see a site where we can offer comfort to each other.

  74. Barbara Keddy Post author

    Hi Eileen: These itching episodes are dreadful, I know!I wish I had the solution, but only by working to calm our nervous system will we be able to handle ALL our symptoms. Thank you so much for joining us! Barbara

  75. sheri

    I have been diagnosed 1st with dermatographism(type of hives and intermittent itching much worse with temp changes and actually when I was younger worst with cold weather.) Now in past few years the fibromyalgia has been thrown in and RSD. I have been to dermatology and somewhat managed with allegra during the day, zyretec at night and vistaril- also at ight if need- works better than benadryl as it does not have the sleepy side affect like benadryl. Benadryl spray also works if one is itching and you need something topical. Still haven’t got all the medical craziness to this diagnosis figured out, but hopefully a dermatologist /immunologist will shed more light on the complexity. Cymbalta works much better than neurotin/ lyrica/gabapetin and one does not have the weight gain.

  76. Alicia Mejia

    It’s almost 1:00 a.m. I’m exhausted trying to calm this terrible itching all over my upper body and thighs. I’ve tried lotions, moisturizers, creams with camphor, baths, baths with magnesium salts, magnesium tablets (help me sleep better when I’m not itching). Gabapentin and cymbalta don’t offer any relief – only nausea. Neurontin seems to help me sleep when I don’t itch also. Stress seems to trigger itch in my case, but how do I avoid stress? I get so depressed thinking how I’ve suffered chronic pain all of my adult life (more than 30 years). Anti-depressants are not the answer, they only make me drowsy – I need relief of the symptoms, I don’t want to mask them. I’m a R.N. and I wonder if this profession has anything to do with this condition. Several RN’s I know suffer from fibromyalgia.
    Prayer and quietness helps me. But flare ups of pain and itching are unbearable. Thank you for being out there to at least let me know there are others in my lot who look forward to even a day that is symptom free. God bless all of you.

  77. Barbara Keddy Post author

    Dear Alicia: When these attacks come on it is so difficult to think of deep breathing, meditation, slight exercise, especially when the itching seems to be much worse at night. I have found that epsom salts baths help at night,not always, but some of the time. How to control our wandering mind, filled with anxiety takes so much discipline and time! I know what you are experiencing and I believe that nurses have fibromyalgia more than the general population. Too much empathy for those we care for. Very best wishes to you, Barbara

  78. Tami

    I can relate to all of you. I have been diagnosed with fibromyagia a few years ago after seeing doctor after doctor. This has been a battle with the fatigue, pain and itching. I itch from head to toe, and its unbearable. I feel that no one understands what I am going through and it makes me sad. I feel that I am not the person that I use to be. I get depressed and have a lot of anxiety. My husband tries to understand, but how can he when he is not going through it. I have severe pain in my left leg and pain in my upper back constantly. This itching drives me crazy, it keeps me up at night. I need relief!!! Like everyone says it comes and goes. Sometimes, I don’t itch for months. but it always comes back and I don’t know what triggers it. Can anyone help 🙁

  79. Barbara Keddy Post author

    This itching is probably exacerbated by the change of seasons and by stress that is unusual. Meditation and easy stretching should help along with relaxing baths of epsom salts. Good luck, Barbara

  80. Barbara Keddy Post author

    So many have told me the same thing, Karrie. The itching will subside when we learn how to tame the nervous system! It’s that old hyper arousal that needs attending to! Best wishes, Barbara

  81. sherry

    i’ve been itching for about 4 years. It started on the palms of my hands and balls of my feet. Allergra helped stop the itch. Now I suffer from a full body itch. Scalp,hair line, any clothing marks,(dermagraphics),welts. Sometime relieved by benedryl lotion and added zertec. It’s driving me crazy and no one is able to diagnose it. Not even the Allergist.

  82. Anne

    Hi Everyone,
    So I’m not crazy-this is good to know! I have not been diagnosed with Fibro yet but my doctor started to discuss it with me last year. I always have one pain or another, restless leg syndrome, chronic fatigue, Epstein Barr and the intense itching. Last year around this time it started. First I thought it was a down feather coat I brought, then I thought I was allergic to the chalk at my daughter’s gymnastics, then I thought it was my Christmas tree. I was under a lot of stress at the time and when my doctor said it is not an allergy but stress related I thought he was nuts.
    Last week it started again as I was talking to my daughter’s therapist, I started scratching at my arm like crazy, I took two benedryls that later threw me into a panic attack and put calamine lotion On it. It did not completely resolve it but I was too loopy from the bendryl to scratch. I have been up since midnight scratching like crazy and I have a job interview in the morning and I know I won’t be able to completely hide the rash and bruises that will be there in the morning. I have taken one Bendryl and applied the calamine lotion. I applied an ice pack and the combo Of the three along with reading the post are really helping. I am calling my dOctor as soon as I can-I can not take another itching spell! Mine is definately stressed induced. Thanks for listening.

  83. Sharon

    my name is Sharon & my itching is so bad I use a wire kitchen brush on. my skin & then put gold bond on, & take vistaril 50mg. & lay there & Try to calm down, but I wasn’t nervous! I was taking a nap! Can’t figure it out! There’s lots more, but too many things to name!I’m now taking artisists classes in water three times a week! Only been going since Oct25th! Hadn’t helped yet, but I’m going to keep trying!

  84. Barbara Keddy Post author

    Hi Sharon: I know exactly how you feel, but using a brush on your skin is not a good thing to do. have you tried epsom salts baths? Do be careful about how harshly you treat the itching. Meditation and light exercise will help if you keep at it, but it is a slow process. Good luck, Barbara

  85. Barbara Keddy Post author

    Dear Anne: Of course you are not crazy. This time of year is so difficult for itching:change of season and less daylight, more sad thoughts. Please try meditation and light exercise and read my book for an understanding of the social factors at play here! Good luck, Barbara

  86. Kaatje

    Hey fellow fm-ers:
    I’m having one of those nights again, with me it seems to hit me the moment I lay down to sleep, like my entire day catches up with me and the itching starts, between my shoulderblades running down my arms, from my hips running down my legs, I keep rubbing my feet and twitching my toes because it drives me up the walls! I have talked to my fm specialist about it and she told me to try magnesium, it helped for a long time about 8 months and now it’s back. I have an apointment with her again on wednesday.
    I am so happy and so sad to find all of these stories knowing there are others going through this, it’s so agravating I usually end up crying and wishing for everything to be over just to get rid of it, for me I prefer pain, since pain i can bite through or at least take painmeds to fall asleep but this itch! This itch! stops me from thinking clearly, getting the sleep I need and I usually end up straining my muscles just to get rid of it and that only helps the moment I tense them up the moment they relax it’s there again. I started feeling fibromyalgia (and cfs) when I was 16 and I got diagnosed at the age of 21 it’s not a nice to think I have an entire life of this itch to live with. I just hope I can find a solution. Or a relief for it when it does start! i’ll keep an eye on this thread and maybe one of us will find a solution ?
    Good luck everyone <3

  87. Barbara Keddy Post author

    Dear Kaatje: I know we all can relate to your story as I believe we have all been there. Hopefully you can do some meditation and relaxation strategies to help with some of that agony! Best wishes, Barbara

  88. Tracy

    Hi everyone, my name is tracy. Approximately 5 years ago I was told by an ARNP that she suspected I had fibro. She told me I should go to a Dr to get an actual diagnosis. She started me on Lyrica and my symptoms subsided. I had muscle pain and felt like i was bruised all over. After a couple of years the medicine wasn’t working so well so she changed me to Savella. Again my symptoms subsided until 2 weeks before Christmas. I broke with a severe rash on my torso. Went to the Dr to get a steroid shot. It worked for 2 days then it came back with a vengeance and started down my legs and arms. Went to another Dr who put me on steroids for two weeks to get me through Christmas and hoped it wouldn’t come back. During this time I had a bad yeast infection and thrush. The day after I finished the steroids the itching came back without the rash. It is a deep itching and the skin feels sunburned. The more my clothes rub the worse it feels. After reading up more and seeing your posts I think I want to go to a specialist and was told to go see a rheumatoid specialist. Is this the type of Dr you went to? I feel like I am going nuts and can’t seem to to get any relief. Most of said you were taking lyrica and some said xanex. Are there any natural meds to try with the mess?

  89. Barbara Keddy Post author

    Hi Tracy: I wish there was something I could tell you that would ‘cure’ your fibro. I have lived with this for so many years and tried everything. The only solution to living with this nervous system that will not behave itself is light exercise, meditation and a caffeine and sugar free diet. The danger as I see it is overmedication. Since we are not dealing with a disease, but a dis-ease it isn’t possible to find someone who will help us as we are the only ones who can help ourselves. It takes discipline and hard work. I myself am not a good role model. I know what we must do and often do not have the energy to follow through:-(. There are so many triggers that it is often discouraging. However, on the positive side it is possible to train our brains to be optimistic as we read the changing our brain books I have cited elsewhere. When I follow my own advice I feel so much better. Good luck! Barbara

  90. Betsy

    Omg so glad I found this article. It’s so crazy when u get so many different symptoms and you say to yourself this cannot be related to to my fibro right? Or can it? You google it and surprise fibro and itching wow another symptom to add just in case you are still having doubts you have “Fibro”. It drives me insane…..I’m 34 with 4 kids and I have moderate scoliosis, disk deneration, fibro, and fibto being said comes with every other diagnosis like CFS, Tmj, RLS, etc, etc, etc….does it get any better?

  91. Suzanne Jeffries

    My brother died three weeks ago, and I am so much worse — itching, pain, extreme skin sensitivity. I wish I could just be nude all the time! Long showers help me, and — amazingly, massage, even to the hyper-sensitive areas. I as SO happy to have found this site…

  92. Kath

    Hi everyone.

    thankyou so much for your posts. Yeah finally an answer that makes sense!!! I know as horrible as it seems i am so happy that I think I have finally found the answer to what is wrong with me. Been to doc after doc over the past 10 years. thought ms but mri came back fine. Don’t think doc knows what to do with me. On waiting list for nuroglist!!!. Have pain most of the time, tingling, numbness, and the itch, brain fog all the fibromalgia symptoms. Done the trigger point test onmyself and nearly all of them were incredibly painful. Just need to find a doc who knows about this.

    So thankyou for all your posts, even though the itch drives you mental – sitting here scratching at the moment and about to take sleeping tablet so can get some sleep … I’m thinking i’m not gong mad after all there is an answer to all this!!!!!!!!!!! keep positive everyone so nice to have you all to chat to and read others stories, its nice not to feel alone in this even though it drives you nuts at least there is a reason and we’re not all going nutty!!!

  93. Barbara Keddy Post author

    Hi Kath: Glad you are enjoying the posts. I know how frustrating the itching can become and you can tell how many other people have the same horrible experience with it. Again, it is important to quiet your nervous system through mild exercise, avoid overstimulation, meditation and proper diet. I know how tough that can be with so many aggravating symptoms, but just a few minutes a day can really help:MOVEMENT! MEDITATION! best wishes, Barbara

  94. Barbara Keddy Post author

    Hi Betsy: yes, you are right…all those lovely symptoms tolled into one big diagnosis of fibromyalgia. Please read my book and it will become even more clear as to why more women than men have fibro! four kids is enough to do it! Regards, Barbara

  95. Andriy

    I am a 55-year old male with Fibromyalgia for 31 years. I have had all the body-wide pain, fatigue, sleep disorder, IBS and other symptoms thst whole time Only yesterday did I read that the itching can be related to FMS. It has been bothering me for several years now, but I had no idea what it was. I googled “fibromyalgia itch” and this conversation came up. Thank you. Now I know what is happening. For me the itching seems worst when I am trying to fall asleep. This illness ” increases my Platonism”. I am a (married) Ukrainian Catholic priest and a university professor. All of us have to suffer in o e way or another. It is trying to stay productive and reliable that I find most challenging about this condition. Hang in there, ladies. I too have had my share of those who think it’s all malingering or hypochondria. At least now they have isolated the CNS. When I was first diagnosed there were viral, bacterial, fungal, autoimmune , and trauma theories. It was a shot in the dark. Some progress has be made. God bless you all.

  96. Barbara Keddy Post author

    Thank you so much Andriy for your comments. It isn’t often I get comments from males unless they are confidential. I know what you mean about staying productive as I too worked with fibromyalgia most of my adult life and the fatigue and pain often overwhelmed me. It is interesting that of all the comments I receive the most about itching. The itch is so deep that it is impossible to relieve especially when it is on an area where I can’t reach, like the back. You are right that now that there is so much brain research we can at least have hope that more research will be done with those of us with fibro, in particular fMRIs to note our brain pathways! I wonder if many priests and ministers have fibromyalgia as you are the firs to come forward to me! Many nurses and social workers have commented. Kind regards, Barbara

  97. Thais

    My itch occurs simmetrically, on both sides of the body! Elbows, underarms, tigh, ankles… I’ve had two episodes of intense itch, first of them forming blisters in my body, treated as scabies, then treated as allergy, until doctors decided that they don’t knwo what was that. I believe that the “treatment’ spread the itch all over. It was restricted to some areas in the beginning… I even got a bad infection in my hand, and foot…

    Is that the nervous system!? But if so, there shouldn’t be blisters, no?

  98. Barbara Keddy Post author

    Ahhhh, the old itching complaint which is sooooo common among us. Mine does not occur with such a pattern but is so aggravating as well! Fortunately after meditating it subsides temporarily (usually!) Best wishes, Barbara

  99. Mitzi

    Thank God I am not crazy… Fibro itching in my hair and on my legs… with numb thighs that tingle painfully.. blurry vision to boot.. and that’s just tonight after a horrific migraine and IBS all day.. seems all my life long symtoms have a name

  100. Barbara Keddy Post author

    Dear Mitzi: Of course you are not crazy. Join the rest of us and know we have many of the same symptoms you have and can relate to you. P{lease read my book for an understanding of the root cause of fibromyalgia and to hear the voices of other women! Regards, Barbara

  101. Sandra Kessler

    I read this article with great interest. The worst of my fibro symptoms has become my constant, intense itching. The most intense itching is on my abdomen, breasts, and scalp where my skin is most tender. But it can crop up just about anywhere and moves around my body. I was always an “itchy” kid – as a child I’d ask my mother for back scratches all the time. But this intense itching started after gall bladder surgery in 2002, when I notices that my scars (four, small, laparoscopic incisions) itched terribly as they healed. And it has steadily worsened through the years to the point that it is simply constant and unrelievable. I have many other fibro symptoms in addition and myofascial spasms and pain, but the itching keeps me in a constant state of “alert” from the never ending sensations I feel.

  102. Barbara Keddy Post author

    Dear Sandra: I agree with you that among the many symptoms itching can be the most frustrating as there seems to be little that relieves it other than long soaking tub baths (for me a least) and even that is temporary. It seems to be worse when the seasons change so expecting bouts of it before long. Keep in touch, Regards, Barbara

  103. MJ Nuskey

    Thank you, Thank you, I’m NOT crazy!!! I’ve been suffering from chronic itching for over 20 years. It first started in the bottom of my feet and hands and I did discover that sometimes cold or heat would cause it. I also discovered after trying to do anything at all to stop the nightmare itching that if I held my hand and feet under very hot water sometimes it would go away. Not always. I then became aware that little things like a purse strap or leaning against almost anything would produce a raised itchy spot that would drive me crazy for a few minutes. Then one month I had poison ivy, was stung by a bee and had a tic bite. These seemed to throw me into a never ending bout of itching almost daily. I regularly use antihistimines, Atarax and anti-itch creams to soothe my itching. If I get bit by almost anything I go into a “Loop” of itching non-stop and that is when I start taking prednesone for a few days until the itching goes away.. Sometimes this will help me for a week but then it all comes back; mostly for seemingly no good reason at all. My itching can be anywhere but for some reason I don’t usually feel it in my legs or lower back. I do get it everywhere my skin is exposed to tight fitting clothing like a waistband. This condition is never mentioned when people have talked about Fibro and I wish I had known long ago that this is a symptom because I have all the symptoms of Fibromyalgia as well. It doesn’t help the itching but at least now I know that I’m not nuts and there are other people out there who know just the way I feel. Thank you so much for writing this article. I’m going to show it to my dermitologist so he gets some education himself!! All the doctors just shook their heads and say “I don’t have a clue why this is happening to you”….ugh! Thanks again, MJ

  104. Barbara Keddy Post author

    Thank you, MJ! I hope your doctor will read some of the 90 articles posted here or read my book to get a better understanding of this frustrating syndrome!
    Best wishes,

  105. Erin

    Barbara, I cannot express to you how thrilled I was to stumble upon this article! I am 28-years-old and was diagnosed with FMS at 25-years-old after long years of searching for an answer to my widespread pain, fatigue, IBS, etc. that was plaguing my otherwise healthy, young body. The intense, almost painful, itching began 2 years ago and it has almost driven me mad in its intensity and persistence. Even though there isn’t much to change it or make the itching go away, I’m thankful to know there’s a reason behind it. Thanks again, Erin

  106. Barbara Keddy Post author

    Dear Erin: Yes, itching can be the most aggravating of all our symptoms but I am also interested in your IBS. Please read my recent blogs on pelvic floor disorders as I am finding that prolonged IBS eventually often leads to collapse/prolapse of the bowel, pressing against the uterus, pressing against the bladder, etc. and as a person ages, particularly if she has had children the situation becomes worse. Even more so if there has not been a focus on pelvic floor exercises! Glad to have you on board. Please read my book on the cause of fibromyalgia in the first place!
    Regards, Barbara

  107. Doris

    I have also had itching since I was a teenager, but it became intolerable after I took Cymbalta for a few months (this medication worked in relieving the pain, but side-effects like itching and a feeling of being electrocuted every time I turned my head, made it impossible to continue taking it) I went to a dermatologist and he gave me different treatments. The only thing that seems to work is perscription 800mg Ibuprofen and it only works a little bit .

  108. Barbara Keddy Post author

    I am so sorry Doris…know that you are not alone. Do try meditation for a few minutes each day to calm your nervous system and good luck,

  109. Tiffany

    I am only 31yrs old but have been dealing with fibro almost 20 yrs. In the past 2 yrs it has become much worse and almost constant. Like many others I struggle with trying to figure out what new onset symptoms are fibro related or seperate issues. Over the past couple of months I have had widespread itching anytime I get warm/hot. Including every time I take a shower. It isntnthe same feel as a tyypical dry son itch but more like a medication reaction itch. Today it flared up with the typical temp raise, but within about 15-20min of onset a random thunderstorm popped up. I of course had to deal with my other fibro weather triggered pain issues but didn’t connect it to the itching untilnstumbling across this post. Hopefully I can get my doc to prescripe something to help control it from now on. Thank you!

  110. Barbara Keddy Post author

    Thanks for your comments Tiffany! Your story is like so many of our own and we can all relate to your itching discomfort! Best wishes, Barbara

  111. Sallee Harrington

    Now at least I know I am not crazy. I have had Fibromyalgia for some years more than 15 when it was finally diagnosed. Just this year the itching started, across my upper back by my armpits which is the worst, on my sides, arms, my scalp always itches, my hips, you name it. I have tried all kinds of lotions, potions and creams to no avail. There is no rash to be seen. It is worse at night of course and no matter how tight I get my sheet even a small wrinkle feels like my skin is being sandpaperd. No one understands what this feels like unless they have it too. I am wondering if anyone has tried the CuddleEwe mattress cover touted for relieving fibro pain and discomfort while sleeping. I have to keep a bamboo back scratcher within reach to scratch uncontrollable itching spots. My husband is very good with this problem and often has to smooth Calydryl anti itch lotion on my back to dull the urge to itch. I stumbled onto this site when looking up itching causes. I would like to know what alternative things I can learn to do to help power down the itch. I am gald that I am not alone.

  112. Barbara Keddy Post author

    Dear Sallee: Thank you so much for your comments. You can tell from all the comments on itching that you are not alone. I do wish that I had some easy answers. I really smiled at your bamboo back scratcher as my husband also bought me one! But, this itching is nothing to smile about so you have my complete understanding!
    Best wishes,

  113. Susan Carson

    Thank you all. I have had fibro for many years, and in the last 2 years the itching has started. I have been to doctors, etc. to identify the cause of it. But to no avail. It is weird: it is the constantly moving itch. Starts in one place – quickly moves to another and keeps on moving. And it drives me nuts! And therefore affects those around me. I take a benedryl thinking it is a histamine related symptom, and it works, but probably by putting me to sleep!
    I must admit that Fibromyalgia seems to always finding ingenious ways to show up! What is interesting now, is that I have had some recent immunological challenges: eg. I cannot take allergy shots because I react to them, I have chronic sinus infections, the fibro pain has become weakness in addition to pain on my left side among others. I had some blood work done, and I am now ANA and RA positive. Has anyone else seen this?

  114. Barbara Keddy Post author

    Thank you Susan: I know what you mean. The itching never seems to end and sometimes is worse than the pain and fatigue. Know that you are not alone, Barbara

  115. Jessica Alba-Vazquez

    Thank you. I also thought I was going crazy, I have extreme itchness on my scalp and all over my skin. I was getting depressed and tired of not knowing why? I too have FMS and Sjogren’s syndrome.

  116. Barbara Keddy Post author

    Ah, Jessica, that dreaded itching. You can tell that you are not alone by the numerous comments on itching. We have to become our own physicians and find ways to deal with each and every one of our aggravating symptoms! Best wishes, Barbara

  117. Karen Dewberry

    I am so thankful I found this article! I was diagnosed with fibro back in 08 after I got shingles. Since then it’s been an up and down roller coaster of symptoms. My doctor put me on lyrica which worked great by my gastro doctor decided it was responsible for my 20 stomach ulcers (I disagreed) and preserved me to stop taking lyrica. I’ve been blessed with long periods of no symptoms of the fibro but when it flares up it REALLY flares up. Last August I miscarried my first pregnancy an of course I was pretty depressed and symptoms returned. Last month we were finally cleared to try again for a baby so I was excited and nervous. Suddenly after knowing it might happen I started to itch like crazy on the soles of my feet and my palms. I thought I was having an allergic reaction to something, but before I knew it the itching had spread sporadically thought out my body. It’s been 4 weeks of intense itching at the most akward times. I found out last week that we had a chemical pregnancy was was again miscarrying. It wasn’t till I read this article that I realized that this insane itching has been from the stress of the last month and the fibro. I haven’t found any relief except for using ice packs. But it’s hard to put ice packs on the bottom of ur feet and under your breasts. Are there any other remedies to go along with meditation?

  118. Barbara Keddy Post author

    Dear Karen: your story like so many is a sad one indeed. I hope that others can think of some ways to help with that itch of yours. I have depleted my own ideas. I wish you many best wishes,Barbara

  119. April Rockwell

    I am a 27 year old woman who has been in pain since i was 16 no one belived me untill last year i was finally dignosed with chronic fatigue and fibro i have had the burning and the flu like symptoms but this itch is unbearable i cant get any relif at all and now its making the burn worse and the lyirca is not working. i have two young kids so anyone have any suggestions because i must get up in the morning and keep moving and with this itch and the burn worse it makes it very difficult to keep up with them thank you april

  120. Barbara Keddy Post author

    Dear April: I knowhow overwhelming it must be for you with these symptoms. You are not alone. I hope some of the suggestions that people have made in various comments and the blogs I have written will help with suggestions.
    Best wishes,

  121. Pam Young

    I too have had fibromyalgia for over 17 years and it has finally got to the point to make me seek disability. I have all the typical symptoms that are known and also have the itching and excruiating headaches. I have trouble getting to sleep although I am exhausted, but the pain of every position I try makes me toss and turn. The itching is uncontrolled..I have taken so many benedryl and others, just to be disappointed. I have scratched myself raw and it still goes on.
    I have itching like yeast infection but was tested negative, and nothing relives the itch.
    I am glad to know it has been identified as part of this condition. Now I hope the disabiltiy judge hears what I have to say. Though it is very unlikely, I still can’t work because of the pain and fatigue of standing and being up for very long. I hurt no matter what I do, and seem to be getting weaker, even though I have worked very phyical jobs for over 30 years. I need the disabiltiy to survive and the medical so I can get better treatment. At this point, I have no income or medical coverage and am basically homeless. Am staying with a friend till I find a great big shopping cart!!
    Only hope it doesn’t come to this, but is getting close.
    Thanks for allowing me to post, it helps to air

  122. Barbara Keddy Post author

    Dear Pam: Please don’t tell us you may become homeless as that is so sad to hear. I am so sorry you don’t have medical. Do keep in touch and let us know how you make out with disability. This dis-ease is such a dreadful condition. You have many who can respond to you with great understanding.
    Know that we share your frustrating,
    Regards, Barbara

  123. charlyne martin

    I have had fibro since the early 80s when I was told it was “in my head”. It began after an auto accident in which I had few outward injuries but the day after, I was in very intense overall pain. I saw a physician who told me the name of what I was now experiencing, yet some doctors did not believe me or his diagnosis. A Physical Therapist brought me information to prove otherwise. I thank her every time I run into her. Now, I am experiencing the “itch”. It is most pronounced after a shower or bath. It is intense and widespread. I apply lotions, oils, creams, and nothing stops it. I described it to my immunologist as “pinpricks of itching that jumps around on my body”. While I feel sad for all of us who are in the throes of this awful syndrome, it is good to not feel alone. New symptoms have surfaced: Swelling in the feet, ankles, and lower legs. I see a rheumatologist who assures me it is from the fibro and not some other dreaded illness. He gave me 5 water pills over a 5 day period and nothing. I am drinking fluids and trying to eat foods that increase fluid release. I prop my feet and legs at night and sometimes it helps but soon as I am mobile, the swelling is back. Well, may we all continue to share and in a way, find solace in numbers.

  124. Barbara Keddy Post author

    You will know from the many many comments on this particular blog how comon itching is with fibromyalgia. I hope the other comments here give you some degree of support. Very best wishes, Charlyne, Barbara

  125. rosa

    :*( tears of joy because I have been itching for a couple months now & I found your site. I hit my head in Feb & got a concussion, immediately after that the stiffness started. I already had headaches but not to the extent that they are now. They became daily or they would last up to 10 days at a time. Progressively more & more symptoms have been showing up. My son started to think I was faking for attention. It has been horrible. Then came the itching. The other day I was looking online for itching remedies because I have tried everything & the atarax doesn’t work. The atarax that I was originally given for anxiety. My depression is so bad now because I don know what is wrong with me. Anyhow back to the itching. I came across the itching was a symptom of MS. I started reading & sure enough the symptoms are very similar. Dr & Neuro both say they don’t think its MS but the Neuro mentioned Fibro which is interesting because I had already looked into Fibro cuz a friend said I sound like another friend of hers. Except that when I did the research I never found itching so I asked if I have Fibro WHERE IS THE ITCHING COMING FROM? I thought I was going crazy. In fact the other day I was sitting in my Dr office thinking he was thinking I was having a breakdown because I was so upset. I have an MRI schedule but when I found your page about the itching, I believe more & more that I do have Fibro!!! Thank you so much. I don’t want to be sick but if I am I would rather have Fibro than MS.

  126. Barbara Keddy Post author

    Dear Rosa: Ah, my dear woman. You are not going crazy! Please, please,please read my book, then many of the blogs and try not to just focus on the itching. There is hope and I write about ways in which to control symptoms. Very best wishes, Barbara

  127. Corrina

    Obviously I’m here because I came across this article after 2 months of hell. I’m 37 yrs old and have been having widespread pain for 4yrs. While I do have back issues and have been on hydrocodone for 3yrs, which dulls the pain just enough to get through my day…work and home… it just doesn’t work as well as I need it to. I recently asked my pain management doctor about Fibro and he wanted me to start taking Savella, unfortunately I had to be weaned off my anti anxiety & depression meds, Zoloft. While being weaned off this med, which I’ve been taking for 6yrs, I started to have really horrible migraines, dizziness, nausea and more trouble sleeping. While I have suffered with all of these symptoms before , they increased after coming off the Zoloft. Part of my sleeping problems in the past was the itching. I never told anyone about this because I thought they would think I had bugs or something. While having a conversation with my brother about his health issues, he said he had the same problem with the itching. I was much relieved to find out I wasn’t alone, now reading these blogs I see that I am far from alone. My real point is that if I had these episodes occasionally on Zoloft, which is an anti anxiety med, and then suffering pretty much constantly after coming off it… I just wonder if the Zoloft was kind of holding the itching at bay?! Food for thought. I have all the symptoms of Fibro… and have for many years and have not been actually diagnosed although my doctor thinks it’s a very good possibility that I may have it. So maybe for those suffering with the itching and severe sleep deprivation, like myself, perhaps trying an anti anxiety med would help. Like I said… food for thought!

  128. Barbara Keddy Post author

    Dear Corrina: Thank you for your thoughts. Please read my latest blog, just published July 17, 2012. Hopefully it will help! Also my book sets the stage for these ideas which continue to evolve.
    Best wishes,

  129. Julie Ellis

    It is just after midnight, I have fallen asleep and then woken up with intense itching. It is driving me crazy, I have never had the itching this bad before. At the same time I have water retention, I have had this in my left leg for a little while now, while I have the itching the water retention seems to be getting worse in my right hand. I have a ring on my little finger, this is getting tighter and tighter. I think I have had fybromialgia for many years, I was told about 15 years ago by my GP that she thought I had FB but nothing was done about it, on reading up on the subject, a lot of things that I had put down to old age I now realise are part of the illness. In a way I have found that quite comforting, I thought I was going mad at times always having things wrong with me. I have had a lot of trauma this year, I wonder if this has made all the symptoms worse,

  130. Barbara Keddy Post author

    Hi Julie: You aren’t alone. I hope you will read other blogs on this site to gain a better understanding of this dis-ease (note: it is NOT a disease). Hopefully my book will explain the difference between a disease and a dis-ease.
    Best wishes,

  131. Caraleisa

    I have had this itching for years. When it was occasional, Benadryl helped. Now I take zyrtec daily, which wards most of it off. And add benadryl when needed. Ice also helps intractable itching spots a lot. But I had no idea this was yet another fibro “feature!” It helps to know this… thanks!

  132. Leslie Leavitt

    Glad to know that my intense and I do mean intense itching around my ankles is from fibro. The itching is slowly going up my legs. Seems to be on both legs. Other parts of my body are itchy but nothing like the ankles. I have literally shredded the skin. I’ve tried ice, lanacaine and lidocaine. Sometimes they help. The best help I get is from a homeopathic pill called Hypericum. It is made by Hylands. Another thing I take is a homeopathic liquid made by Newton called Eczema/Skin Care. If I take both religiously, I don’t itch.

  133. Barbara Keddy Post author

    Dear Leslie: Know exactly how you feel. It is among the most aggravating symptoms of this frustrating syndrome. Thanks for sharing your story about what helps you.
    Best wishes,

  134. Bobbi

    Hi, I have been complaining about numerous things my entire life. I’m 21 now and was just diagnosed with fibromyalgia last week. This pain isn’t new to me as I have been experiencing it forever. The itching,however, has only been occurring within the past year or so. This is silly, however I do feel it helps: peppermint oil. It’s about $10 at a drugstore. I do feel this dries out the skin a bit but it really relieves the itch. It’s very soothing. I read a lot of the posts on this site and want to thank all of you for posting. It really helps me out in terms of reassuring myself that I am not insane.
    Does anyone have any recommendations as to what medications to take? I am already participating in hot yoga and eat very healthy. Unfortionatly my gp thinks I am a hypochondriac and my rheumatologist is very difficult to get in to see, so I would really appreciate any advice.
    Thank you all so much!

  135. Barbara Keddy Post author

    Hi Bobbi: Hmmmmm peppermint oil?! Will have to try it. My main itching spot is on top of my left foot. It can drive me wild for hours. I have found that hot baths with epsom salts help somewhat.
    By the way you are not a hypochondriac!
    Thanks for tuning in! Happy new year!,

  136. marie

    Greetings y’all,
    I have suffered with this itching for about 20 yrs, being told time after time it was eczema, but nothing would help. Recently I went to
    See a dermatologist who told me it puerigo, wich is caused by stress and it affects woman in their 40’s that have very stressful lives. With this, stress does not affect mental health, but physical health, in other words the stress affects Me thru my body, not my mind. Does this make any sense? My itching is on my neck, arms, shoulders. Can this be part of fibromyalgia???

  137. Barbara Keddy Post author

    Marie: Have you been diagnosed with fibromyalgia? We can’t so that; you must have a diagnosis from a physician.itching is indeed a symptom of fibromyalgia as you have already read in the many blogs. Best wishes,

  138. DS

    This could be a long one. Ive never been diagnosed with fibromyalgia but this is interesting. My husband and I are laughing as I’m reading all these comments. I started my itching as a teenager with even the daily bath being painful. I’d dress lightly go out into the cool evening air at night reading while wishing I could run around the block with restless legs. Food would cause me to itch within a couple of hours so there was literally a fear of eating anything outside the very basic things I believed didn’t cause the itching. Over the years I’ve developed alopaecia which progressed to the entire body. I still don’t tolerate dry heat well. I too have the large solid frozen ice pack my husband has had to make friends with. I cannot sleep without pajama pants or ill get rashes from the heat. I have problems with pressure, touch fabrics weather, striped sheets etc. atarax is wonderful once I found an allergist who told me there was a range of doses I could use based on the frequency of flare ups and tolerance. I’ve had work threaten my employment until my dr and hr agreed there was a legitimate condition and no pattern of abuse. I’ve learned to work with it. Also, Uv treatment really works at desensitizing the immune system but there are risks. Right now the itching is TOP priority. The creepy crawling skin isn’t fun. The deep muscle pain comes from time to time where the leg massage after a pedicure is really uncomfortable.
    The hardest part is dealing with all those people who want to fix the problem with herbs and supplements. Having spotted skin is the least of my problems but it definitely flushes all those people out of hiding. flare ups causing tortuous nerve firing can drive you nuts.
    I fight with myself being that my brain never stops but I’ve had to learn to relax. Really relax. My work wants me to work more and I’d love to do a lot more but I’ve found the best trick is to check out by resting and taking the atarax when it seems to last longer than a day or two. Or when it starts to interfere with my sleep. I have to have flexibility and make up for it in between. This is a very quick story I could go on and on but I will have to look more into this.

    Thanks to all for sharing these very personal stories. I too am glad to know I’m not crazy!!!

  139. Barbara Keddy Post author

    Dear fellow sufferer: your story is indeed interesting. But it sounds like the many others who have fibromyalgia and have written comments on this blog. Have you considered asking a physician to help you investigate if you do or do not have fibromyalgia? Phew! Familiar stories! I’m happy you are able to take solace with the comments of the others and very best wishes,

  140. DS

    Thank you and I’m also going into the nursing field hoping as an added benefit I will better understand how this all works. I will also follow up with my doctor. My allergist referred me to derm and now I’m thinking of going back to the PCP for looking into this condition.

    Thanks again, D

  141. Barbara Keddy Post author

    Dear DS: Hopefully going into the nursing field will not add to your challenges about health. Take good care of yourslef as people with fibromyalgia tend to be ones who take good care of others while not looking after themselves. Good luck!

  142. Gayle Flindall

    Thank God I found this website while ‘googling’ fibromyalgia itch. I have had the most intense itching all over my bodyy for the last six months. I have scratched myself raw….I am a mess of scabs from my neck down. I can’t sleep. I just scratch all night. I have had fibromyalgia for 22 years but had never had this particular symptom before. I thought I was going insane. Was ready to read my doctor the riot act…help me or else. What a relief. Now I know that if I can get a good night’s rest it will probably start to clear up……so off I go to my GP this afternoon for some help in that regard. Thank you, thank you, thank you!!!

  143. Bethany

    I was just diagnosed with Fibromyalgia a month ago but have had the itching coming and going for about 9 months. Mine presents sometimes with a rash and sometimes without—allergists, dermatologists, etc. and I have found NOTHING that helps it (but clothing irritates me more making it impossible to stay at work some days). I am basically stuck drugging myself with Benadryl to fall asleep and hope I feel better when I wake up. Glad to know it’s not just me.

  144. Barbara Keddy Post author

    Oh Bethany: This is indeed one of the most aggravating symptoms of all. We can all relate and I hope this blog has given you some degree of comfort. Regards, Barbara

  145. Gayle Flindall

    I have been scratching myself raw foe 7 1/2 months. the doctor haelps me out with a prescription strength antihistamine. Much better than Benadryl….but still wake up in the morning scratching. I can handle the pain of fibro and I can handle the fatigue of Chronic Fatigue…….but this is driving me crazy. Have to really watch my depression level because some days I don’t hink I can go on like this…that’s how bad the itching is.

  146. Ellis Jimbo

    Finally, scientists have developed advanced treatments that won’t allow itchy skin to keep you from making the most of the season. According to Dr. Michael Southall, a leading scientist at Johnson & Johnson’s Skin Research Center, there are new ways to help ensure against extreme itch. Until now, over-the-counter remedies have included topical hydrocortisone treatments that provided only temporary relief. A new breakthrough technology has revamped the anti-itch category, allowing hydrocortisone to stay on skin for a longer period of time. These new products not only soothe and heal but can also last up to 12 hours, making for a successful day at work or play and a peaceful night’s rest.”

  147. holly arthrell

    So Great to hear that this is a symptom of fybromyalgia, although not great to have this symptom. I agree the aches and pains of this disease is easier to deal with than a break out of severe itching, and burning that doesn’t go away. At times i feel like i need someone to just knock me out so i don’t turn my body into a blood scratching mess. My symptoms of the itching can start anywhere on my body, and than spread to other areas within seconds. I tell my doctor, and he claims to have no idea what it could be. I’m afraid that if i were to be driving a car and had one of these attacks, that i would have to pullover on the side of the road and scream and scratch until it subsided. There has to be a pill that works instantly, i have tried Hydroxyzine HCL 25 and it does help, but it seems the longer i am taking it the more i need for each episode. So thank-you to all that post your symptom, and i’m glad to find others that understand how horrible it is. Family and friends don’t always get it!

  148. sandra

    I thought I was alone in this. I’ve been itching for several months. The Benadryl is hardly effective.

  149. Barbara Keddy Post author

    Yes, Sandra, this itching is a terrible challenge! The only things that really work are stress reduction techniques, especially meditation.
    Best wishes,

  150. Deborahlynn forbes

    HELP !!! I bagan itching out of the blue 2 weeks ago. It is so severe I had to publically stand up in church get to a wall and scratch. My 14 yr old does not want to go anywhere because I stopped at poles and begin scratching. I have bleed, bruised, have bumps straight down my spine. In 2 weeks I have slept, and I kid you not 10 hrs total. It is totally debilitating. I tried anti itch cream from Golds Bond and all that did was burn. I tried lubriderm for dry skin and still no relief. Yes it intensifies if I’m stressed about something but even if not it is constant. I can not live like this. What do I do. I need help and I need it now. I have tried some bio-feedback techniques I was taught but so far nothing. Benedryl does nothing. Anyone, anyone please help me. I’m desperate. Very desperate

  151. Barbara Keddy Post author

    Dear Deborahlynn: I wish there was an easy answer. As you can tell from the many comments we cannot seem to find the solution other than persistent mindfulness meditation to calm the nervous system. I know this isn’t what you are looking for, I regret to say!
    Very best wishes,

  152. Charlotte

    I had no idea why I get itching spurts until I just read all of this. It drives me crazy. I have just today labelled myself a human weather vane that has a indicator of insatiable scratching that just won’t let up. I have noticed that my itching comes during the change of seasons. I suffer from FM pretty severely and the more I read the more disillusioned I am of my future. So many things prevent you from having a quality of life sometimes it is hard to stay positive.

  153. julie barnes

    hi i also have fibro and have very itchy feet and the palms of my hands. i have various creams and take an allegy tablet every day but still have this constant irritation. i think it’s a matter of trying to retrain the mind and make the best of it. it does dominate, but as i work full time i’ve got to get on with it. i don’t think people really understand what fibro does to you because the symptoms are so many and varied-take care and best wishes juliex

  154. Barbara Keddy Post author

    As you can tell Julie you are not alone. I wish there was a magic wand that could eliminae these itches for us all. Currently having the same symptoms and find only epsom salts baths help but then only temporary.

  155. Barbara Keddy Post author

    The itching seems to be the worst of all symptoms…note how many comments there are. I wish I could wave a magic wand and we would all be rid of it:-(
    Best wishes, Barbara

  156. Brenda

    I too have this problem and often find that with it I am unable to relax. I generally never take alcohol, but when when I can hardly stand being in my body anymore, a glass of wine or 1/2 tot of brandy helps. It seems to relax me.
    Wishing you all the very best!

  157. joyce

    After 2 weeks of painful itching, I finally slept last night. I took 50 mg Of Hydroxine and 75 mg of Amytriptoline. I can’t stand this prickly skin problem. Just got lucky researching the internet on FM and read that this cond. may be part of FM.

  158. Deborahlynn forbes

    I also was given the Hydroxine but it not only did not help it made me fuzzy in head and weak.
    I am just learning to live with it and make no apologies for stopping wherever I need in order to scratch.
    I will be going back home to seek advice from the one doctor who has helped me through my spinal disease the most. I know he will have answers these dr.’s are not giving.
    I’m frustrated with being told this is my life and no cure so get over it. My Dr. At home got me out of a wheelchair after 10 yrs. he never gave up and never let me.
    Thank you all for your advice and I pray for all of us who suffer

  159. Michele

    Itching is the worst and most constant problem I have. This has been going on for ten years. I have seen allergist and dermatologist who have prescribed antihistamines. These do not work and only increase my appetite. It is an infreqent luxury to feel comfortable in my own skin.Xanax seems to help me cope with the itching.I have an appt with a rheumatologist in two weeks.

  160. rollen

    What is Fibromyalgia? My doctor has given my Pregabalin Capsules , Off Lately after consuming the Capsules for 25 days , But I am getting this Itch from the 13th days of my capsule consuming. My doctor has not suggested or confirmed that I am Suffering from this Problem ( Fibromyalgia ) . All he has given me is capsule … Please advise

  161. Wilma Rainwater

    As sad as it is, it’s nice to know that other fibromyalgia sisters and brothers are also experiencing this annoying itching. It never occurred to me that it was brought on because of the weather changes, or as part of a flare. I tend to itch on my face, ears, arms, legs, and back. I’ve resorted to showering, using a loofa generously, then slathering myself with baby oil. In a short time, here I go again, scratching, scratching, scratching. Hopefully, there’s a researcher out there that’s going to help us in the near future.

  162. Barbara Keddy Post author

    I am so sorry Wilma that this change in season is producing such flare ups in itching. It certainly is an allergice response to environmental and emotional stressors of our hyper aroused nervous systems. PLEASE do practice some relaxation techniques; that is about the only thing that will really help in the long run, Regards, Barbara

  163. Barbara Keddy Post author

    Rollen, sometimes one cannot say for cerain that one has fibromyalgia. You need to record if you are having other symptoms related to this condition. Most doctors can now find ways to assess fibromyalgia sometimes by just pressing on the 22 trigger points. Bes wishes, Barbara

  164. Cheryl

    I found that a combination of hydroxyzine and a bath with apple cider vinegar has given me relief for quite a few hours at a time. Any form of relief is welcomed. Know it sounds weird, but hope it can help others.

  165. Wendy

    Omg it’s so awful how many are suffering. I too have Fibro and my nerves started firing 4 wks ago (3rd time but only lasted a week last 2 times) mine is all around my genitals and up to my coccyx. It spreads up my back, arms and legs occasionally. Does anyone else suffer in this way..??? I’m getting so depressed 🙁

  166. Barbara Keddy Post author

    Dear Wendy: Please, please try meditation daily for the next few weeks and allow your nervous system to calm down. That is what fibromyalgia is: a hyper aroused nervous system which needs calming! Best wishes,Barbara

  167. sharon ferrell

    Hi my name is Sharon and for almost 15 years I have itch all over my body daily all day, especially in my vaginal area and my thighs and now my rectum , I can think of something that would make me go into and scratching spell, I notice when I’m nervous I will start to itch or if I’m driving I itch, I find myself scratching in front of my family because it is so hard to contain it now,being around others I would get to itching that I have to make an excuse to go somewhere to scratch, I get some relief from itching cream but its to the point its not working or I’m something as now as I’m typing this I’m itching just thing about it,I went to the GYN she gave me some tropical cream it worked but I’m out,I feel as I have a nervous condition that makes me it and it wait until I’m out in public and starts,I just want to jump out of my skin because I can’t hide it any longer, and I could never explain to anyone what was going on with me for the lack of being embarrassed of my virginal itchiness, I wake up in the middle of the night scratching to so bad it wakes my husband up, my husband tells me not to scratch but I can’t help myself, it has become a big part of my life and its taking advantage of me because I can’t do any thing without an itch I can’t scratch, my life is on hold until I fix my problem with itching. I read that these ladies here have Fibromyalgia what is that? I have not been diagnose with anything yet, but its making me feel as I’m crazy because I don’t know what is going on with me, please can somebody help me…..

  168. Barbara Keddy Post author

    Hi Sharon: Have you asked the doctor about fibromyalgia? If this is the only symptom you have it seems unlikely that your physician would suspect fibromyalgia? Your itching sounds dreadful and I wish you the best of luck trying to find out the cause. Hopefully you will find relief. Best wishes, Barbara

  169. Dania

    I am getting relief from Cymbalta and Hydroxyzine. The night dose of Hydroxzine is important. Try two or three glasses a day of water with a half teaspoon on baking soda. Avoid acid producing foods particularly sugar, soy, chocolate, sulfites, and caffeine. I am 56 years old and I have had fibromyalgia since I was seven or eight years of age. My nose, lower face and genitals itch the most and sometimes I get heat rash and deep body itching that can’t be scratched. I have had hives break out on the palms of my hands. The only thing that helps is a strict diet and the pills albeit I may be able to stop taking the pills once I am consistent with the diet. I have now gone for long stretches, several days, without discernible itching due to the medication. But the medication can’t calm the itching when I eat chocolate. A base (alkaline) diet really helps but it is tough to follow daily. Also, get your weight down because prediabetic or diabetic neuropathy can contribute to the problem.

  170. girl4242

    I have random painful nerve itching inside the bottom of my foot. In fact that is what prompted me to find this site.
    I massage it and use an ice pack until it subsides sometimes twenty minutes or more. The ice is the only thing that counteracts the painful itch and eventually seems to numb it. I can not imagine total body itching. I would probably go in a cold bath to soothe myself but how can you do that if you are out? And you would have to stay in the cold water. I just wanted to pass on what does work for my situation and say that my heart goes out to those that are struggling with these conditions.

  171. Al Smith

    For years I’ve itched all over, more so anywhere that I’m sweaty. I don’t have any bumps, rashes, hives or any other skin symptoms. The itches can’t be directly scratched as if they’re internal. At the same time, scratching all over seems to generally reduce the itching. Antihistamines help me sleep. But, I can’t take them in the daytime, because they make me sleepy. I read that this systemic type of itching is an allergic reaction to grains and dairy products. Days I don’t eat them it’s much better. But, grains and dairy are hard for me to avoid.

    I know there’s little that we can eat or drink these days that isn’t poisoned in one or more ways. Most fruits and vegetables absorb various amounts of sodium fluoride (rat poison) from pesticides and absorb it through their roots from fluoridated water or pesticides in the soil. Our loving leaders accomplish water “fluoridation” by adding fluorosilicic acid to our drinking water supplies. This toxic waste byproduct from the smoke stacks of fertilizer plants contains 23% rat poison, lead, mercury, arsenic, barium, cadmium and polonium. The latter three poisons are known radioactive carcinogens. So, we avoid drinking any public water, opting for spring water, praying that it hasn’t been secretly fluoridated. But, I can’t continuously eliminate foods from my diet without ultimately ending up with nothing to eat. And, I can’t afford to buy organic produce.

    So for the past few months, I’ve basically eaten whatever I like. But, every time I eat, I say a little prayer, asking my body to take the food I’ve given it and make it into super nutrients and perfect medicine while eliminating anything that’s not good for me. And I don’t worry about all the above. And, it’s really helped to tone down my itch that can’t be scratched.

    Email al [dot] smith [at] majorityvoice [dot] org for your free copy of “The Fluoride Nightmare,” a five minute, concise but comprehensive speech to educate your city council on the horrors of fluoridation which will prove to be one of the banksters’ worst crimes against humanity.

  172. Barbara Keddy Post author

    Thanks Al: I agree with all you say. No doubt the foods we eat and the water we drink all contribute to our infernal itching. But, I don’t want to downplay the hypersensitivity to other irritants to our central nervous system which combined with toxic food and drink are dangerous!
    I appreciate your comments!

  173. Dania

    I hear you about ending up with nothing to eat. I eat only a fourth of the choices, suffer when I cheat, and rarely eat out. The food does not have to be organic. Make sure your Vit. D and D3 are in the normal ranges and make sure to drink 64 fl oz of plain water a day with a couple of glasses having a half teaspoon each of baking soda. Give it a month and see what happens.

  174. Barbara Keddy Post author

    I have heard from many that ice is the answer! Some parts of the body are hard to apply ice to, and especially in the winter. Weather is a big trigger, I find.
    Thank you for your comments, Girl4242!

  175. Jane Asher

    What kind of doctor should I see to be checked for FM?
    I’ve had SEVERE itching for over 2 years now. It’s mostly on my head and all the way around my waist. The only visible irritation on my skin is from my scratching. It feels like the itch is under my skin, I can’t get to it, but scratching does help. Sometimes the scratching even feels euphoric. I also feel like someone is pricking me with a needle in random spots all over my body. The pin prick feeling is very random, sometimes 2 or 3 days apart.
    I’m a dog groomer who sees lots of dogs with fungal infections so I’m paranoid of fungus and bugs and worms. I’ve used multiple medicated soaps for fungus, flea shampoos, medicated fungal sprays, and numerous dry skin lotions. Nothing works. Benadryl just makes me sleepy. If I have a glass of wine it just loosens me up and I scratch until I bleed.
    I have a mild latex alergy. I only react when it touches a mucus membrane (latex gloves at the dentist, condoms, etc.). I think I might be alergic to ellastic and plastic when it gets old and breaks down. I got rid of my old mattress protector that had a plastic lining that had become brittle. That seemed to alleviate some of my back and leg itching. I also got a new memory foam pillow to replace my old one. That seemed to help also. 90% of my pants have elastic waist so I’ve tried to replace them with new ones, but it has not helped.
    I don’t like doctors or pills. I try to let my body just fix itself. I think too many meds just weakens a body. But I can’t handle this much longer! I feel like I’m going nuts! It’s embarasing when my customers see me scratch. They might think I have fleas!

  176. Amy Whisenant

    I have not been diagnosed with FM yet, but I have this itch that drives me insane, and, the only solution that works is freezing my skin. This irritation is only on my arms and I am afraid I won’t have any arms left at the rate I am going. Is there a specific blood test I should ask for??

  177. Tena

    I am so glad I came across this post.. I have severe itching on my legs my belly my back top of my head my arms it’s crazy anoying !!! And I have found nothing that helps, I have seen dr after dr also a dermatologist even a neurologist and I have nothing that helps. 🙁 I have made sores on my legs and arms from the intense scratching it’s so embarrasing.. I will definitly try some of the things you have posted. God Bless & Good luck to you all !

  178. Gail Lauricella

    I have had fibromyalgia over 40 years and have had the itchy,burning skin only the last few. I really thought it
    was food allergies but after reading other comments I am beginning to wonder. I have a severe reaction after
    eating garlic and onions so have completely eliminated them from my diet. I also am gluten sensitive and have
    not eaten any gluten for about 9 years. I was about ready to go to an allergist to see if I have any other allergies.
    I just had my GP do allergy blood work and all that showed was an allergy to shrimp. The itching often is worse
    after I eat. I will try the relaxation and baking soda. I agree, it can be debilitating. My husband often wakes in the
    am to find that I have slept in all the beds in the house. Just like baby bear. Thanks for all the information.

  179. kate

    What a relief just to find this information and everyone’s comments. I was diagnosed with fibro 22 years ago, (stressful time in my life) managed to rid myself of the pain part of it. Then four years ago, in another highly stressful time the pain returned and I was diagnosed again. With supplements, warm water therapy, relaxation, meditation, lots of walking and Lyrica, again I was able to rid myself of the pain, and have been pain free for almost 2 years. But recently some very stressful events brought on this incredible itching all over my body. I thought it might be fleas from my two cats (both indoor pets) but no fleas ever turned up. I thought something in my carpets or bedding was causing it, but nothing turned up, and a thorough house cleaning didn’t change things. No rashes or insect bites or anything, just continual itching.

    Finally I realized that the itching episodes were happening in concert with my mind obsessing over the stressful events I’m inundated with now, particularly when I go to bed and am unable to get to sleep until 6:00 in the morning. So it occurred to me that there might be a connection with fibro. With that in mind I decided to try some of the things that helped me get over the pain. Last night when I couldn’t sleep and was up for hours just scratching my itchy skin, I tried holding one of my purring cats close to my chest and concentrating on the warm loving feeling. And it calmed my mind and body sufficiently to stop the mental hyperactivity, or at least slow it down. The itching episode then dissolved and I was able to sleep for a full 8 1/2 hours. It felt wonderful!

    So this morning I googled fibromyalgia itch and found you here. I will try to let you know what methods I am trying, and any results.

  180. Barbara Keddy Post author

    You know I have had my doubts about foods causing the itching. I think it is caused by the hyper-aroused nervous system. I am so happy to hear from people who have had a long time struggle with fibromyalgia and not just developing this syndrome. You have become the expert of your own body and know best what does bring about some degree of relief. Thank you so much for your comments, Gail.

  181. Barbara Keddy Post author

    Your comments are very welcome! A warm bath, relaxation techniques, soft music, meditation…all good strategies for those of us with this irritating symptom, thanks Kate!

  182. Wilma Rainwater

    The best luck I’ve had with doctors is with Internal Medicine doc’s. Due to my husband’s work taking him various places, I’ve been to 3 different Internal Medicine specialists that have all been very understanding. The other type of doctor that I was sent to for verification of diagnosis by one of those 3 was an arthritis specialist. He basically said, yes you have fibromyalgia. When I call a new doctor’s office, I always ask if they treat fibromyalgia patients. It’s amazing the variety of answers I’ve gotten. When they laugh, and say “We don’t call it that.” I cross that name off the list. Good luck, Jane.

  183. Barbara Keddy Post author

    Hmm, a doc who doesn’t recognize a fibromyalgia syndrome?! Very strange in this day and age. I don’t blame you for checking out a doc beforehand! Thanks for the tip!

  184. Meryl

    I’m so glad to read that other people have itching with fibromyalgia. I thought I was going crazy or something.

  185. Liz

    I’ve had several health issues over the past two years, I’ve been making several trips to Mayo clinic in Rochester, MN. I had a full allergy test work up, GI tests galore, and some other tests. I’ve been complaining about insanely itchy skin for at least 2-1/2 years, along with stomach problems, achy joints and exhaustion. The first thing the allergist gave me was 10 mg Doxepin HCL prescription to alleviate the itching at bed time. The doctor described it as an anti depressant that helps with sleep. But one of its side effects is telling your brain you arent itchy! I only take it when I’m itchy, and when I know I can lay down if I get sleepy, so I usually hold out until bed time. It will make you tired. Which is generally not a big deal to me because when my itching kicks in, I’m useless anyway. It’s all consuming.

    I’ve been diagnosed with a few GI problems and fibromyalgia. If you’re suffering from ongoing itching, talk to your doctor about a low dose of doxepin. It brings relief!

    Also, I love neosporin’s new eczema anti-itch cream! It works on non-eczema itching pretty darn well too.

  186. Lori

    I just started to have this new symptom with my Fibro (diagnosed 5/12). I had some dry skin and mild itching previously, but this last weekend it was crazy, bright red and bumps like hives in different random spots on my torso, neck and ears. Each day it seemed to move or spread. I tried different creams and found antihistamine at night and cortisone helped. Even my hair brushing against my neck and shoulders was making me uncomfortable. I had read about this happening to others, and could not believe it was just a nervous system thing if I had hives. I found this part of a report at the Fibromylagia Network webpage:

    “Xavier Caro, M.D., of Northridge, CA, performed most of the early research in this field to show that there was a high concentration of immune-reactive proteins in the area just beneath the surface of the skin. He theorized that these proteins had escaped through larger-than-normal pores in the blood vessels supplying the skin, and they could be a source of immunological reactions because the body would view them as “foreign” substances in the skin tissues (i.e., it is not normal for these proteins to pass through the blood vessels).
    Although Caro’s findings point to an immunological disruption in the skin of patients with fibromyalgia, they are commonly seen in conditions where the microcirculation (the capillaries and small blood vessels) has undergone changes. Haiko Sprott, M.D., of Switzerland, reported that the number of capillaries in the skin of fibromyalgia patients were significantly reduced and irregular in shape. The amount of blood flow to the peripheral tissues (such as the skin) was substantially reduced as well.” from Fibromyalgia Network, go there to read more.

  187. Momma J

    To Liz – did Mayo diagnose your Fibromyalgia? I’m from TN and have considered going there myself because I think I have it because I have almost all the symptoms. I’ve been having major problems for over 2 years and don’t seem to be getting anywhere with all the doctors I’ve seen. I’ve seen my GP, Rheumatologist, Orthopedic, Neurologist, Dermatologist and Endocrinologist. I do have Hashimoto’s Thyroid Disease which I’ve had for over 20 years but all of a sudden about 2 years ago my thyroid levels went haywire and have not been stable since. I have the maddening itch on my upper arms and shoulders that begins about 8 pm each night. For months I suffered every night sleeping with ice packs on both arms. I tried all kinds of creams, lotions, benedryl, hot showers, cold showers but the only thing that helped was the ice. The Dermatologist, who also has a background in Internal Medicine, finally prescribed me Gabapentin and it has helped greatly. I’ve had xrays, MRI’s, nerve conduction testing and none of these explained why I itch. The Dermatologist now says that the itch very well could be a symptom of Fibromyalgia. I don’t really know where to go next.

  188. Lori

    Follow up to itchiness- I also checked what products had contact with my skin: shampoo, soap, body wash, detergents, fabrics. I finally realized I had substituted a generic for Aveeno body wash. I stopped using it and got some Aveeno Skin Relief body wash, applied more skin moisterizers, and ran my wash through an extra rinse cycle (just to be sure). After a few days I saw a big improvement, not so much sensitivity. Most likely it was the Aveeno substitute, something I got at Target. Previously I had used CVS immitation Aveeno, which never caused such a reaction.

  189. Lori

    To Momma J,
    Fibromyalgia is often difficult to diagnose, as some of the symptoms overlap with other medical labels. For myself, my symptoms came on gradually and intensified leading up to me seeking medical help, or further symptoms developed after my intitial diagnosis nearly two years ago. One of the challeges of fibromylagia is that there is not one simple test such as a blood test. Basically, many tests are done to eliminate other conditions with similiar symptoms or patient reports. Although a rheumatologist or other trained medical professional can do a physical exam and test for trigger points or sensitive spots, in the case of many sufferers these can come and go during the day. Some of the symptoms that many have that can include many body systems are: overall achiness of muscles like the “flu”; stiffness in muscles and joints; pain all over for months; increased sensitivity to light and contrasts; chronic fatigue; difficulty doing tasks that were never previously a problem; difficulty concentrating or remembering; frequent sharp pains in the neck or shoulders; sensitivity to touch (especially in those trigger points). I can no longer lift or carry things greater than a couple of pounds for more than a few seconds. Before I realized this, the strain would cause my arms and hands to be extremely sore or to tingle. Once I knew my limitations and began taking Cymbalta as prescribed, I could cope much better, and also my thinking improved. I have had to adjust expectations and job situations, but that is also part of the treatment, while still staying as active as possible in a low key way. Attitude, adjustments, and light activity can make a positive outcome. Accepting this, and realizing it is a chronic but not life threatening, just life altering condition, can make a difference. If any of the above symptoms ring a bell, try other doctors. Or if could be you have something else. Don’t get discouraged, be your own advocate, but don’t self evaluate. If you do really have Fibromylgia, you would be so miserable and in pain everyday,there would be little doubt. Even with medication and adjustments, I still have daily pain and fatitgue, it is just minimized and more managable now. Best wishes for a solution soon.

  190. Suzanne Sichel

    I am in the same thing with you guys. Last October 2013 I just woke up with this terrible itching all over my body. I am continuing to itch. It is now been 6 months. Will follow up with you.

  191. Barbara Keddy Post author

    I have found that changing seasons is a very bad time for the itching. This all requires us to practice strategies for calming our nervous systems…not easy! I am with you in all of this 🙁

  192. Lisa Murtagh

    Do any of you have itching after taking bath or shower? I also have an autoimmune disease scleroderma, and I have itched for years but sometimes the itching is different. It usually feels like fire ants under my skin that I can’t get to, and it now has a burning, painful feel to it. Does anyone else have this?

  193. Barbara Keddy Post author

    Yes, dear Lisa: Many of us have those same symptoms. Sometimes it feels like we just can’t get under the skin to give it that necessary scratch and it is so agonizing. Know that you aren’t alone!

  194. kitty

    I have had itching for years. First on my legs. I thought something was crawling on me. Then about 3 years ago it moved to my arms. Comes and goes. But for the last 3 months it has been solid and unbearable. After research, I went on 600mg gabapentin. A few hours later WORDS HARDLY DESCRIBE THE RELIEF. There is bleed through now and then. I need to keep track of when but OMG, I feel like a person again. Pregabalin is used too but if not generic it is very expensive and stronger with more side effects.

    I was diagnosed with fibro in 1994. Good luck to all.

  195. Barbara Keddy Post author

    I too have taken Gabapentin for pain relief, Kitty. Like you it is sometimes not effective. The itching is one of the most frustrating sympoms of this dis-ease but so little written about it! Thanks for your comments, Barbara

  196. Andrea

    I have been diagnosed with fibromyalgia for several years now. I have suffered with the typical aches and pains, stiffness, hyper-sensitivity to external stemulous etc. and itching. No one talked much about the itching . Then, this past February, I had shingles. Ever since then, i have itched and had hives in the general area where I had shingles. I’ve had a biopsy and been treated for about everything and it is just plain and simple hives. The place where the biopsy was done even got a huge welt where it didn’t like the one stitch put in for 4 days. I’m DESPERATE to get this itching to go away!! It’s driving me crazy! It’s been going on hard core for 5 months now!!! Any input would be so appreciated! Feel free to email me even!

  197. Barbara Keddy Post author

    Dear Andrea: I wish I had a quick response to your desperation. As you can tell from the many, many comments on itching there is no easy solution. Other than soothing baths and meditation I have personally not found any other ways to deal with my own issues. I have noticed that when I am over stimulated or there is a dramatic weather change that the itching is worse. Trying to avoid exciting situations in an ever changing world is not easy. We with our hyper aroused nervous systems have to be every careful to maintain a calm environment- easier said than done. Best wishes, Barbara

  198. Okeh

    Thank GOD am not the only one with this. I thought i might have been going crazy. Mine is usually when i get stressed and it started off only during hot weather’s but then graduated to an all weather thing.I’m just grateful am not alone on this.

  199. kitty

    Thank the Goddess for Gabapentin! I never really realized how bad it had gotten until I took my first dose and got relief. OMG!!!!!!!! The relief was so releasing for lack of a better word. Most days I can go with only 300 mg. When I start getting tinges I take the second 30o mg. Now I also realize that it was not an itch. It was like others have described, a burning pins and needles. Soooooooo blessed to be rid of it. I hope you will try Gabapentin or pregabalin. Good luck. Or as they say here in Mexico — Buen Suerte!

  200. kitty

    Have you tried pentagabalin? I believe it is a little stronger. I live in Mexico so I can get the generics and pretty cheap. But I think in the u.s. you have to buy the patented brand at a much greater cost. I can’t think of the name right off. Good luck.

  201. Jacquie Raffile

    I’ve been disabled with fibro for 12 years now, but it started many years before that. My recent pain management doc told me at our last meeting there was nothing more he could do for me. I’m now taking 15 mg of morphine every day with 3 oxycodones, 3 400 mg of gabapentin, hydroxychloroquine, and many more. My legs are scared by all the scratching as I’ve been using a knife (I clean it with alcohol) and scratch from the bottom of my feet up to my head. I even took a picture on my cell phone of all the skin that came off my legs during one scratching session. And there’s nothing more anyone can do because doctors know so little and care so little about learning anything regarding fibro updates. Depressed, in pain, and itching.

  202. Barbara Keddy Post author

    Oh Jacquie: This sounds so terrible. Your poor legs. You are taking so many meds too. My heart goes out to you. I guess the interactions of all the meds is not helping the itching either. I am sending positive thoughts and hope you can find the means to help your central nervous system that is more conducive to better health.
    Best wishes,

  203. kitty

    Jacquie- Gapapentin has been a wonder drug for me. But lately I have had to take more. I’m in the middle of a kitchen remodel, all is chaos and I am stressed. I’m hoping things will calm when the work is done.

    I have a few scars from the itching. I will send out a prayer to the universe to please ease your itch and improve your life.

  204. Barbara Keddy Post author

    I too take Gabapentin and try to discipline myself to meditate when I am overly anxious. There is little doubt in my mind that fibromyalgia is caused by an excess of anxiety which over activates the central nervous system. Anything we can do to calm ourselves by moderate exercise, meditating and avoiding overly stressful situations is highly recommended. The change of seasons is especially hard on us. Take good care and thanks kitty!

  205. kitty

    Thanks for the reminder. I really need to get back to meditiating. I’ve had reminders all over the place.

  206. Sherri

    I’m still unsure if my official diagnosis includes FM. I have a confirmed diagnosis of polymyalgia rheumatica and just recently stopped taking prednisone after nearly 3 years. A former physician was convinced that I have FM and I do meet the clinical guidelines. Aside from the typical pains, I suffer with terrible itching and there does not appear to be any single cause. I have suffered terribly and my skin has suffered the consequences of relentless itching. When it begins, I get a stinging sensation either on my upper body (either one or both arms) or on the lower legs. When the itching begins, I try to gently rub my skin – which never works and the itching very quickly gets uncontrolled. I have tried ice packs, both hot and cold water (showers) and/or an icy hot gel that is typically used for joint pain. I usually end up raking my skin to the point of either drawing blood or creating large areas of ecchymosis(blood under the skin) that is an ugly mess for days while my body tries to heal itself. I have also taken a fingernail brush to my skin in a failed effort to soothe the itching. What I have come to understand is the brain is sending a message that I have an itchy spot and they human reaction is to scratch the area. With FM/PMR, the signal is misguided and the itching is actually not on the surface of the skin, it is actually at the nerve level and this is why it seems impossible to calm this type of itching. If the medical community could just figure out how to stop this signal from reaching the nerve endings under the skin, I honestly feel like I can live with the remaining FM/PMR symptoms and limitations. There is nothing like being itchy and not being able to make it stop.

  207. Barbara Keddy Post author

    Dear Sherri: I believe your comments about the itching are right on target! A physiotherapist told me that by gently rubbing, almost brushing the area is more effective than scratching as the nervous system can only be soothed in that way. You will notice hos many , literally hundreds of people, have commented about itching. It seems as though it is among the worst of that hyperaroused nervous system doing its frustrating thing!It isn’t easy to deal with. I wish you good luck! Calming the nervous system is the only treatment, it seems.
    Best wishes,

  208. kitty

    Sherri- Have you read the other comments? Many of us have found relief by taking gabapentin or pentagabalin, two very similar drugs. One is Neurontin and I can’t remember right off what the other is but hallelujah gabapentin, the least strong stopped my itching. Check out the other comments and successes.

  209. Dania

    i have always had chronic itching due to FM but it got worse after I took a flu shot in 2011. The itch was so bad that considered ending it all and then I decided to get better. I spent half a year on prednisone and got really fat and I only had 40% of the itch resolved with it. Finally, I learned that vitamin deficiency and adrenal fatigue contributed. Also food and substance intolerances (i.e. perfume). The best help has been a fast acting form of magnesium oil that is sold as a body rub. My doc has me spray it into warm water as a drink. Also I don’t use deodorant or perfumes. I drink a lot of water sometimes with a little sea salt. I only eat whole foods. Instead of bread I have whole kernel corn, corn tortillas, and pop corn. No wheat. No preservatives. No soy. No sulfites. There is a drug free answer. Keep searching for it. Don’t give up. My life is slowly restoring balance. I rarely itch anymore and for sure I want to live a long life.

  210. Dania

    Also, the itch was so bad that it was worse than pain. I discovered that sometimes over the counter pain pills helped the itch. My docs all pooh pooh that solution but it helped me.

  211. Dania

    One more thing, I also suffer from chronic anxiety. My CNS is overly hyper. Improved nutrition is helping my anxiety. The key for me has been magnesium and a really boring whole food diet. I am use to the diet now and I like it but it took an adjustment in attitude on my part.

  212. kitty

    My opinion only but I believe all with FM should be taking 800-1200 magnesium and at least 1500 ml. Malic Acid. Read about it about 20 years ago but think ProHealth web site sells a product (very expensive) where you can look up the doses.

  213. Barbara Keddy Post author

    It is a tough road to travel but your advice seems sensible. Takes so much discipline! Not sure about all that corn though or drinking sea salt.Thanks for the comments as I am sure they will be helpful to many.

  214. Sherri

    Hi Kitty;
    I was on Gabapentin (3000mg) daily for more than 2 years and sadly, it did not help with the darn itching either. Neurontin was also tried, as was Lyrica. I guess I’m just one of the select few that haven’t responded. My rheumatologist is considering trying Methotrexate in the new year to see if that will help with the polymyalgia rheumatica. Methotrexate is widely used for cancer because it has “disease modifying” properties and without daily prednisone, my muscles feel like they have been put through a meat grinder, my joints burn and swell and my wrists feel broken.
    I am doubtful that Methotrexate will have any effect on the itching and after all the horrible medications they have tried, I’m not sure my liver can handle any further abuse, but we all know that each one of us would make a deal with the devil for some relief, so I will more than likely try the Methotrexate. I wish medical science would consider doing some brain mapping to see if a determination can be made as to why we are all suffering because I’d like to believe there is some type of help for us.

  215. Jacquie Raffile

    What I find amazing is the number of drugs available for men with ED, and yet women suffer every day of their lives and there is nothing available that works, at least for me. I’ve tried Cymbalta, Savella, Methotrexate, and now I’m on morphine sulfate 2-3 times a day, oxycodone 3 x day, gabapentin 3 x day, and too many others to list. My legs are scared beyond belief from the scratching, and the amount of skin that comes off is amazing. I even took a picture of it to show my doc. My GP gave me aluminum sulfate cream, but it doesn’t stop the itching or flaking. All we know so far is that for some reason fibro people have too many Schwann cells (neurotransmitters) under the skin which send pain signals to the brain and spinal cord. Why this is the case is anyone’s guess. When it comes to women’s diseases, science is slow to follow and with a Republican congress, all they’ve done is cut funding for women’s issues. Careful who you vote for.

  216. Sherri

    I’m from Canada and despite having tax-funded healthcare, sadly, efforts to assist women’s health is all but non-existent as well. My wounds are very slow to heal due to such extensive prednisone use and my scars are horrible. When my arms go nuts, I can cause severe damage with little effort. Itching creates an overwhelming need to scratch and I end up with ecchymosis (bleeding under skin) that takes days to heal. My arms are always in a state of healing because when I do break the skin, I end up injuring this same area over and over again…….the end result is nasty scars.
    I know that meditation works very well for some people, but my episodes do not come on because of anxiety. They come on without warning and the intensity is outrageous. The sensation is akin to being wrapped in fiberglass or being rolled in stinging nettles – I have no other way to describe what it feels like when it starts, but there is no specific trigger and never any warning when it’s going to happen. I know the difference between a normal itch and the relentless hours of torture. Just last night I made a midnight trip to a pharmacy to buy an extra-strength heat rub because that is about the only method that will help save my sanity (and skin). A pharmacist told me that the heat created by the cream (or gel) can trick the nerve endings enough to calm them down. It’s temporary, but can be quite effective. Call me crazy, but I still maintain that the answers will be found in neurology. This is a brain malfunction that is not being given any consideration and until the medical community begins to look at this condition from a different direction, we will continue to suffer. It would be wonderful if doctors would begin listening a little better to their patients!! As for last night’s episode……..lasted more than 4 hours and took almost half a tube of heat rub before it settled 🙁

  217. Danita Redd

    Not that much corn… occasionally and no more than two corn tortillas any given day, Not a lot of salt but at least in the morning. Read about salt in the morning jump starting the adrenals. Also, there is no magic formula. It works for me and I hope by sharing, it helps someone else. I have a good doc.

  218. Barbara Keddy Post author

    Thanks Danita: You are right…one size does not fit all! What works for one might not work for all. I am using magnesium gel lately for itching. Too soon to tell if it is helping! You are lucky to have a good doc who understands you and gives good advice!
    Happy this strategy is helping,

  219. Barbara Keddy Post author

    Wow! I am so sorry you are having such a difficult time, Sherri. It seems this itching symptom is the worst of all, even more so than pain and fatigue if the comments on this blog are any indication. I agree that the issues will be found in neurology, a hyper aroused central nervous system is the guilty villain, at least that is my view. How to calm that amygdala is the secret. For me only Mindfulness Meditation works but it requires so much discipline. But at least it does tame the brain if we are consistent. For others it is yoga and other calming techniques like chi-gong.It seems that using certain ointments or gels is barely helpful. But, with fibro any kind of stimulation such as even the change in weather can bring about flare-ups and those darn symptoms of pain, fatigue, itching and so on! I wish there were definitive answers for you.
    Best wishes,

  220. kitty

    As I read your entry it occurred to me that soaking in a hot or warm bath with some herb or herbal oil might be helpful. You may have tried this and probably all the alternative medicine approaches and homeopathics.

    I just and will continue to send out prayers to the universe.

  221. Jacquie Raffile

    Kitty, I’ve tried everything. Unfortunately, nothing homeopathic works for me. I’m too far beyond what any herbs or even vitamins could do to help. Because of the change of weather even in NOLA, I’ve been taking an extra morphine just to get through the day and not waste the day in bed crying.

  222. Jacquie Raffile

    Sherri, I’m sorry you’re suffering too. I tried Gold Bond anti-itching and it seems to help a bit, but I end up using the entire tube as I can itch everywhere. My legs and calves are a mess with scars. I feel sad just looking at them. I’ve been very fatigued lately also, but its my birthday and I hope I still have energy to go out after I take a bath. Sometimes, that’s all it takes to exhaust me. I’m glad I painted my bedroom the prettiest blue-violet I could find because I spend most of my days there.

  223. Barbara Keddy Post author

    I suspect the excitement of a birthday celebration is very stimulating. Do rest afterwards. Happy birthday, wishing you a better year ahead

  224. Jacquie Raffile

    Thank you, Barbara. How sweet of you. Actually, I’m about to lay down now as I’m really tired today.

  225. Kay

    The itching is unbearable, hot tubs make it worse as hot showers do. I begged a new doctor because nothing was working. She prescribed hydroxyzine, that was in 2001. Instead of taking every few hours she said i could take several at a time, so 4 at bedtime and 4 late afternoon. The skin doctors at univ of micigan told me to put clindamycin gel on from because some sores turned into staph infectios. They were hard, went to er a lot. I put the gel on all suspicious sore. I can not cut back these pills or i scrtch like crazy, mainly my forearms, some my back (pasta fork works great) and a little on my head. Ask your dr about hydroxyzine.

  226. Kay

    I was diagnosed with fibromyalgia in 1984 after going to drs for a year. My family dr back in the 90’s told me that fibromyalgia gets worse during rain and has to do with barametric pressure changes. I live in rainy Seattle.

  227. Barbara Keddy Post author

    Yes Kay: I too live in a rainy place and fibro is dreadful when the weather changes as it does so often! We should all live in the desert, haha! But fibro is no joke and anything that precipitates a flare up is to be avoided if possible. Unfortunately we don’t have control over the weather. Thank you for your comment,

  228. Barbara Keddy Post author

    Hello Kay: I don’t know about hydroxyzine ; it certainly is frustrating that one has to take pills just to get through the day when something is not life threatening but interferes with the quality of life. Your itching sounds almost unbearable. I wish you the very best,

  229. Jacquie Raffile

    My GP told me to take Benedryl and zyrtec at night along with ammonium lactate cream twice a day (prescription). We’ll see how this works. Will let you know.

  230. Jacquie Raffile

    I moved to New Orleans from the Northeast in hopes that with a milder weather change, I would do better. But, I still am in great pain even when the weather changes here or is cloudy. I try not to take any more than two morphines a day, but oxycodone alone doesn’t relieve my pain as well without the morphine.

  231. Jacquie Raffile

    My husband is thinking of moving to the coast of Oregon but with the weather being so misty for so long, I doubt I would do very well there. I miss the water though, and there’s a house he’s been looking at which is right on the water. Its very beautiful there.

  232. Ruby Harbaugh

    Yes i was just diagnosed a few mos ago ,, but i have had the underlying itch for a few years ,, an not sure what is causing it,, But thanks to all i read i am understanding an feeling Great!! Like i am not crazy..burning with the itch really gets me i can”t stand that.. Again thanks to everyone who has posted.. i will love follow ups from everyone ,,NOT CRAZY AN UNDERSTAND WHAT YOU ALL FEEL

  233. Jacquie Raffile

    I wish right now that fibro was my only complaint, but the past 25 years have been awful. It started with cervical cancer at age 33, and now I have to go back to my gyn onc on wednesday for another colposcopy. I’m very scared as it seems the HPV is rearing its ugly head again. My doc wants to remove alot of my labia and vagina but she’s reluctant because my fibro is so bad that I won’t be able to take the pain. I’ve also had breast cancer twice and my last onc wouldn’t remove my entire right breast because of the fibro, so I only have a partial right breast. I’m starting to freak out again. You would think I’d be used to all this cancer stuff, but I’m not. I don’t want anymore surgery or radiation therapy. I really need to talk to someone so I thank you for listening.

  234. DS

    Following up on my post back in January 2013, recently I had one of those appts where my doctors finally realized I mean business when I’m telling them this “is NOT NORMAL!!!”. Itching in the past has been a major concern – your skin can truly be a prison without escape or relief. Lately as I’m getting older the symptoms have progressed to various organ systems and I’m being tested for Hyper IgE syndrome or Mast Cell Activation Syndrome. I don’t mean to say that I have relief from my skin, it’s still a daily fear that includes esthesia (sensitivity to temperature/pressure/touch and even sounds occasionally). Unfortunately after a bad cold a year ago, it brought on new symptoms which include IBS and new angioedema reactions – like having no tolerance to any alcohol at all. Pressure on my skin can cause deep bruising sensations and just a gentle repeated tap on my leg or arm hurts. For the intense itching, apparently allegra and zyrtec focus on that part of allergic reactions. I’ve been told to take bleach baths occasionally in cases where I have broken skin to reduce bacterial infections. Again, I have a large solid-freezing icepack that I can use at night so that I can get a good nights sleep and when I’ve been standing on the edge of the cliff of the adrenaline rush from all the internal reactions too long, the atarax has been my peace of mind. BUT the life-changing remedy that really has given me peace in my skin has been UV therapy. It’s apparently a concentrated portion of the light spectrum (not explained well, but that’s the idea I got when asking why I can’t just stand out in the sun…) Truly just 30 seconds 1-3x/week makes a difference. If I go two weeks without it, all the creepy crawlies and adrenaline rush comes back leading to the holes again. Also for the neck rashes and heat sensitivities, I spent some money on pillows that are cooling and don’t conduct the heat.
    It’s sad that we have to live like this, and probably most of us don’t share a lot of it, but we aren’t crazy. I’m always checking myself to see if I’m just training myself to be sensitive, it does change over the years, but none of us would choose this for ourselves or anyone else… Thanks for sharing.

  235. Barbara Keddy Post author

    Dear DS:
    You are indeed the master (mistress) of your domain. You are sensitive to when a flare up is about to happen. You have found the keys to what works and what does not. In spite of this you continue to suffer. Your itching sounds unbearable. While I too have bouts of it, for me the pain and fatigue of fibromyalgia are worse than the itching. Thank YOU for sharing. I hope some of your suggestions will help the others. It is such a problem for so many!
    Best wishes,

  236. Barbara Keddy Post author

    Dear Jacquie:
    WOW! You have a double whammy. Cancer and fibro combined is a serious challenge that confronts you every moment. Yours is a very difficult life. I wish you every success with the cancer treatment and for those of us dealing with just one of this conditions your life seems more burdensome.
    Very best to you during these days ahead when you have to make so many life threatening decision.

  237. Wynelle Dawson

    Barbara – I am experiencing the severe itching in my feet and hands, but only on occasion, but it will last anywhere from 1-3 hours at a time sometimes, and only at night after I lay down. I have not been diagnosed with fibro, but my Mother was. I live in an area where the doctors do not want to diagnose fibro except as a last resort when they cannot find anything else. Now, I have thought about diabetes, but most of the time, during one of these bouts of itching, I haven’t had any sugar to speak of. Also, my husband is diabetic, so a lot of my sugar is already cut out of the diet. Are there any other specifc symptoms I can look for to see if I need to confront my doctor about Fibromyalgia?

  238. Barbara Keddy Post author

    Thanks for your comments Wynelle: WOW! Symptoms of fibromyalgia? There are so many and so varied but the key is when one says they feel ‘sore all over”. That is the standard comment of anyone with fibromyalgia. Sometimes it seems to me that itching is the most important symptom, given the comments on this blog, but actually it is not a primary symptom of fibromyalgia. Rather it is pain and fatigue, particularly pain that lasts for over 3 months. Itching alone would not be a primary symptom. Along with pain and fatigue, sleeping disorders, digestive problems, anxiety, depression are among the most common. There are charts available on line with trigger points outlined. If you have pain when at least half of them are pressed then this is how a diagnosis is made by a physician! Seems rather simplistic, I know! But, since fibromyalgia is a central nervous system disorder there aren’t too many other ways of identifying this dis-ease (NOT a ‘disease’)! When the CNS is in a state of almost continuous hyper-arousal, a physician’s hands are tied as to treatment.
    Frustrating for health professionals and patients alike. Avoiding stress as much as possible, meditating, light exercise and caffeine free diet are about the only solutions.
    Best wishes

  239. Jacquie Raffile

    I would like to ask all of you with fibro, if anyone here is taking opiods, because opiods cause itching which sometimes makes people discontinue their use. I just found this out this weekend as I was going through an overdose of serotonin (this was one of the scariest experiences of my lifetime, I kid you not!) Thanks.

  240. Barbara Keddy Post author

    Jacquie: You may have stumbled on a very important issue.I am trying so hard to find out why this blog is so popular, among all the other 100+ blogs? It is a complete mystery to me.
    I do have some degree of itching especially when the weather changes, but nothing that can’t be handled rather easily and it doesn’t last for long. For me the pain and fatigue is by far the worst, yet the hundreds of you writing comments are drastically affected by itching almost to the exclusion of other symptoms. WHAT IS IT THAT IS CAUSING THIS ITCHING? In fact, it may very well be from opioids. Since I don’t take them is that why this is not such a problem for me, I ask myself? OPIODS DO CAUSE ITCHING! The comments that I receive daily cite multiple medications (see my recent blog on overmedicating) for pain, depression, constipation, anxiety and other symptoms.
    Could this intense itching be the result of opioids?????
    Before I had a heat attack two years ago I found Ibuprofen helped somewhat. Since then I can no longer take an anti-inflammatory as it is contraindicated with heart disease. I recently stopped taking Gabapentin. I now only take Tylenol on occasion. My pain level has neither increased nor decreased! I would love to hear from other commentators about their medication use, particularly on the blog regarding overmedicating.
    Thanks for this possible insight.

  241. Jacquie Raffile

    Last Saturday was an awful experience for me as I was “overdosed” on serotonin. I don’t know how many of you have had this experience, but it is horrible. I wasn’t sure if I had a stroke while sleeping or was having a nervous breakdown. Luckily, my psychiatrist called me back within minutes to confirm my suspicion, that I had too much serotonin in my brain. My neurologist had increased the elavil he put me on for nerve pain, but my psych doc already had me taking zoloft. Since then, I’m afraid to take much of anything but don’t want to go through a withdrawal from the opiods.

  242. Barbara Keddy Post author

    Jacquie: I wish you would repost this on the blog about being overmedicated as this is such a frightening story! It is such an important issue. I hope you are well now,

  243. valeree

    I’ve been having acdreadful timecwithbitching anxiety fatigue etc but I never thought it fibro! how do I find a doctor than can help mme? Most of the replies mirror me 100%
    Thank you for taming my anxiety a bit

  244. Barbara Keddy Post author

    Dear Valeree: Go see your physician. Most nowadays recognize that fibromyalgia is a syndrome that can be diagnosed! Stop fretting and see your physician!:-) Hopefully, you are mistaken but if not at least you will receive some answers!
    Best wishes,

  245. Beth

    I have recently been diagnosed with fibro.

    I had a very tough stressful few years prior to the diagnosis in which I had so many “life changes ” which of course my doc thinks contributed to the fibro coming on.

    I have severe muscle cramps in legs and arms and overall achiness daily (more so when I’m tired) like having the flu everyday. My weakness and muscle stuff is mainly on the left side of my body (although I get arm and shoulder pain sometimes on the right side) which has caused many er trips as I continued to think something serious was happening line a stroke or heart issue. Tests all showed nothing .

    There were (and still are) times when I’m sure im dying and that surely something like fibro that can’t kill you can possibly make you feel this badly! I struggle daily with my diagnosis but have the classic textbook symptoms and tramadol has given me some major relief as of late.

    I found this post by entering itchiness with fibro.

    I have an “itchy spot” on my back (which makes it impossible for me to scratch) that has been horrible for years now. My kids and husband had have countless hours scratching my “itchy ” and it always is there.

    It is maddening in some days and I have just realized rainy cold days it’s worse. Nothing can be seen on the outside other than scabs from scratching.

    I have recently figured out it must be nerve endings to do with fibro.

    i have never posted on a fibro site till now.
    This post has finally made me not feel crazy but also let’s me know I have probably had fibro for years!!!!

    I am currently on tramadol which has been amazing but I worry about pain meds long term of course and am on imipramine also…

    It does seem to help. I just graduated nursing school (went back to school in my 40s) and am currently prn at a hospital nights only. Exhaustion is a huge issue to my flare ups. I don’t have insurance yet so can’t afford cymbalta or lyrica right now.

    Ugh… I have busted my ass to get here (career) but there are nights and days where I feel like I can’t do it.

    Thanks for listening.
    It’s a relief to finally “come out” and vent as I have kept my diagnosis private other than my kids and husband.

    Being in the healthcare field almost makes it worse …

    I want to tell nobody as of now. This makes it tough during flare ups and bad days!!!

    Thanks so much for this blog and everyone’s stories !!!


  246. Barbara Keddy Post author

    Wow Beth: You could be writing my story! Although I have never been on tramadol I have found some degree of relief from Gabapentin. I am not aurprised you are a nurse! So many of the readers who comment are nurses, that caring, empathetic, sensitive nature will show up time after time!
    Keep in touch and I am glad you ‘came out’! You aren’t alone!

  247. Hazel Howard

    My arm is itchy but I can’t figure out where. And it’s so irritating. I want to cry now. Is it because of the dryness of the skin? Can you please help me? Thank you!

  248. Cynthia

    It rained most of the day. I itched like a mad dame in distress. Thank goodness for Oatmeal Sock remedy. Place real oats in a anklet sock. Draw a bath of lukewarm water. Soak and squeeze the sock to your hearts content. You will sleep like a baby. Your skin will feel soft as a babies bum. Do not add extra’s like lavender,tea tree oil or honey, just plain Oats in a nylon sock.
    You will not ITCH 🙂

    I have fibromyalgia and rheumatoid arthritis.
    I recently went off all medications. Generic drugs scare me. I would rather deal with the condition than to be medicated with drugs that do more harm than good with all the side effects.
    Drink lots of water, play calming music, sleepy-time tea before bed and think positive thoughts. I am 66 years young.

  249. Janet

    Hi, I am aslo from New Brunswick Canada moved to NJ. I took a lot of cipro in Canada with problems. I was given 40 pills of levaquin here in the usa and my body blew apart. I have all over stinging and severe itching over my entire body for 3 years.. I have done a lot of research and while it appears fm is overative nerves, these drugs also are neuro toxic, I suffered from fibro for many years not relating it. I would just like you to know it is possible that many cases of fibro are actually cipro induced.. I am about crazed, I took this drug for mere bronchitis over and over but I never took anything as powerful as levaquin.. With cipro damage I still had a life. I now sting over my entire body 247 and itch like I am in a hornets nest.. Please research these drugs and see if you have taken them in the past. I wish for me I had connected the dots..
    blessings, Janet

  250. Barbara Keddy Post author

    Dear Janet: I have never taken Cipro. It sounds like you have had a severe reaction to this medication. Hopefully others who are taking Cipro will guard against any negative side effects. Keep in touch,
    Best wishes,

  251. amy thompson

    I too have been diagnosed with fibro, my family doctor has me taking gabepentin 300 mg 3x a day, naproxen, & zanaflex to control most of my muscular symptoms. But I also suffer from “hot spots” as my doctor calls them. My only relief is Attarax an Rx my doctor gave me after an allergic reaction to an antibiotic induced a hive rash. I don’t know if it actually works or if I have convinced my brain that its for itching, lol. But I too have tried lotions and oatmeal baths with little to no relief. I know its all my nerves and maybe its the gabepentin that helps. But good luck in finding what works for you!!

  252. Barbara Keddy Post author

    Dear Amy: You have certainly had a difficult time with meds and your itching. I am sure you have found support among the others who have written about their own experiences with this symptom.
    I wish you good luck in your search for the right treatment,

  253. Lisa Deal

    I itch all the time, especially my head and my breasts. Weird, I know. I don’t have dry skin. Bathing helps but doesn’t relieve it. I do have fibro and am on Gabapentin. My doctor doesn’t really get the itching but I’m hoping this article will help. I’m miserable everyday. It’s just gotten worse in the last year with job change, move, money stress, so I’m guessing stress makes it worse. It drives me nuts, but I just try to hang in. It’s really stressful.

  254. Barbara Keddy Post author

    Dear Lisa: You are right, bathing does help but only temporarily. It seems to be so much worse with weather changes, season changes, stress and any kind of excitement. I hope all the comments on this blog will help you in knowing you aren’t alone!
    Kind regards,

  255. Diana

    For two years I was itching relentlessly and three dermatologists could not find the answer. I was put on steroid ointments and finally on an immunosuppressant. I had to get off the drug due to surgery for an achilles tendon rupture, so the itching returned.

    FINALLY I found an ointment that stopped the itching….cannabis ointment. I started this at the end of 2014 and it is now 5 months later and my itching has stopped, my skin has healed and I can go for weeks without needing to re-apply the cream.

    I don’t know if it will help with your problem or if you’re lucky enough to live in a state where you can purchase it, but I SWEAR by this stuff. Also, a friend of mine with eczema tried it and it stopped her itching as well.

    I now have my sanity back. I don’t know if it will help any of you, but it’s worth a try.

  256. Barbara Keddy Post author

    dear Diana:
    Thank you for this wonderful suggestion. You are right though, many states and provinces do not provide access to any forms of cannabis. Hopefully it will become soon legalized everywhere and available to all who suffer from the many symptoms of this dis-ease of ours!

  257. Dania

    I have gotten better in that I have a couple of days here and there with barely noticeable symptoms… Id’ rather have pain. My heart to all of you because this thing sucks. If I stayed home and in bed, I bet I would get better but I have to work. Check into adrenal fatigue… And for me the best medicine seems to be benadryl bought over the counter.

  258. Diana barnhart

    I have had this itching for about 5 weeks now Dr wants me to see a dermatologists to find out what’s going making a big move in Oct and a lots been going on this yr.Stress related.What I have ready makes me think I have Fibromalgia.

  259. Barbara Keddy Post author

    Dear Diana:
    Seeing a dermatologist is an excellent idea as if you only have this symptom without the many others of fibro it is wise to have it checked out. Keep in touch and let us know what is found.

  260. Jenntry

    I have fibro but have been suffering (this is embarrassing) from extreme vaginal and anal itch since my late teens (I am now 28). Could my fibro be the cause of this? My gyno can find no cause and nothing helps. It has gotten to the point where its just a part of my life. But if I could make it stop it would be ideal. It has impacted me in many ways. Please reply back to me. Thank you.

  261. Barbara Keddy Post author

    Dear Jenntry:
    It seems this itching can occur everywhere on the body so it could be your fibro! his itching issue is so mysterious. Have you tried Epsom salts baths?
    I have a physiotherapist who specializes in women’s health issues and is expert in pelvic floors disorders and other women’s reproductive concerns. Finding such a therapist would be very helpful if you have one in your area.
    Aw, this condition of ours can be very aggravating as so many of the symptoms seem to spring up from nothing in particular.
    Best wishes,

  262. Eunice

    Wow, Reading most of these comment almost brought tears to my eyes. I have been suffering from an itch over three years now. Have gone back and forth to the dermotogist then to allergists, just to hear you have dry skin. I know dry skin can be irritating but the bout of itchiness I experience has to be more than that. I was told to wash in cool to Luke warm water, don’t use soap, oil yourself down with olive oil, miner oil before drying.every thing I have down spray myself form with benedraly has not been the solution. I will talk to my rotor about fibro to see if I have it. The itchy I experience is worst when I am drying after a shower or being wet or when I sweat during the day. I am going through menopause now so I am sweating every 15-20 minutes. I really feel I am going out of my mind. Every morning is not always as bad as most but the fact that if flares up during the day and during the night make it really unbearable. This site has help me know I am not crazy, I am not allergic to chocolate as my husband says, bugs are not under my skin, my unexplained itch can be fibro. I still itchy but I have something to look into with a name.

  263. Barbara Keddy Post author

    Dear Eunice:
    Please don’t think you have fibromyalgia unless you have the official diagnosis. Itching such as you describe can be due to many factors, fibromyaliga being only one! Not all people with fibromyalgia have itching or for many it isn’t a serious problem if they do.Don’t be too hasty in suspecting fibromyalgia until you have more evidence.
    Good luck!

  264. Trish

    I had always thought that fibromyalgia was all pain. I have been itching on my arms and shins for a few months now and for no apparent reason. No rashes or anything but I scratch until I bleed and then pick at that. So I am making it all worse. I’m glad I finally know a reason why the itching began. Thank you for your post.

  265. Barbara Keddy Post author

    Dear Trish: Now after you have read so many comments about itching you hopefully feel relieved and supported?!
    Thank you for joining in on the conversations with your comments.
    Best wishes,

  266. Kimberly

    I know this is an older post, but I stumbled upon it this morning looking for answers. Here’s my problem…My hand and feet, more often my right palm, itches sooooo deeply I almost wan to dig a whole through my hand for some relief, it’s too deep of an itch to scratch. I do get the itching in my left hand as well as the soles of my feet, but not as ogpften as the right hand. I know that I have Carpal Tunnel in both hands, I just assumed that was where the itching came from, but then why the feet? So last night, I woke up after about 2 hours of sl percent, and my hand was so swollen that I couldn’t make a fist. I chalked it up to the Carpal Tunnel and scratched myself back to sleep. This morning I woke up, and it’s still swollen, sore on my palm from me scratching so hard to relieve the u reachable itch. My left is not itchy nor or my feet. I have chronic pain in all my joints, ESPECIALLY with weather change. I’ve spoken to my Dr. And he said he didn’t think my pain was from Fibromyagia, but I never mentioned the itching, because I didn’t think it was connected. Is it possible this newest symptom(Swelling of right hand) could be Fibromyagia? Any advice you could give old be WONDERFUL! Also, one more thing, I’m bruising very easily, in places that haven’t been squeezed, or bumped into, like my upper inner arms, the outside of my forearms. I’m desperately seeking advice as to what I can tell my Dr. To check me for fibromyalgia, if it’s possible. Thank you in Advance.

  267. Barbara Keddy Post author

    Dear Kimberly:
    You are right- this is an old blog and I am still astounded every day by the number of people who view this particular blog given that there are over 110 others!
    It is true that there is often bruising with fibromyalgia, however with itching and bruising both I would definitely have this checked out with your family doctor.
    As for weather changes they are quite dreadful for most of us with FM. Right now it is raining and my own body is in severe pain. Then there will be another weather change, perhaps even subtle, and that will precipitate anohter flare-up. We are indeed sensitive creatures.
    Advice? Read the other blogs, become informed and learn various strategies for self management of your symptoms. We have to become our own medical experts with regard to fibromyalgia.
    Very best wishes,

  268. Julia

    I was diagnosed with Fibromyalgia in 2010. 2 years ago I developed a rash which started on my back and has now spread to my entire body. My rash is raised welts with clear fluid, incredibly itchy and burning. The skin bruises from scratching at times and from the intensity of scratching i develop sores. I was tested (punch biopsy) for coeliac rash but was negative. The dermatologist put it down to an unknown skin rash. I do take 2 different antihistamines and corticosteroid cream to settle it but it never seems to go away. I don’t like to take medication and read taking antihistamines for over 2yrs can contribute by 60% to getting dementia later on in life. Could it be an over production of heparin and histamine in the body? If so, how do you control this? Any advise would be grateful. 🙂

  269. Barbara Keddy Post author

    Dear Julia: Your story is becoming increasingly common among FM sufferers. I wish I had good advice to give you. I am sure at this point you have tried everything. The only answer is to try to calm your overstimulated central nervous system with strategies I have mentioned in many blogs. Obviously the creams and medications are not working. Perhaps you should try going through this by the CNS approach?
    Very best to you,

  270. Mia

    I have had “difficult skin” for years: always itching after a bath or shower, no matter how short&cold or what products I use. Since my pregnancy it spiralled out of control. Even when I didn’t take a shower or bath for days, I got these itching episodes. Legs, arms and back (sometimes even my ears) start itching for no reason at all. At different times at night or day. It started in the summer and only got worse by the time it was oktober. I was up every night for many hours. I also had (and have) a lot of pain, but the itching drives me insane. After giving birth (c-section) the itch went away for a few weeks. But than it came back. I was diagnosed with FM on the day my baby turned 8 months. I can deal with the pain, I’ll live with the fatigue and brain fogg. But please don’t tell me to live with this itch! It feels as if I’ve been rolling trough stinging nettles, but there is NOTHING to be seen on my skin. I’m taking two kinds of antihistaminicum, but they don’t seem to work. I have no idea what’s causing this. Sometimes I feel like killing myself just to get rid of the itch. But I have way too much to live for. I don’t want to go see a psychologist, because I don’t feel like I’m really depressed. I’m simply at the end of my wits. Why can’t they give me something that works?

  271. Barbara Keddy Post author

    My dear Mia: The main thing that will help is if you take charge of calming your over stimulated central nervous system. This is the symptom that is the most troublesome for you and since one can access the nervous system try gentle touch. So, the strategies are : calming practices such as meditation or yoga, light exercise or movement strategies such as Qi Gong, and touch is especially helpful. If you cannot find someone to lightly touch you to invoke a pleasant response from the nervous system, try using a feather yourself and gently rub your arms or legs to bring about awareness to the brain that you are deliberately changing a neural pathway. Try these strategies, please. Remember to breathe and the more panicked you become focus more and more on your breath.
    Good luck!

  272. Tina

    Hello…. I have a couple of rare diseases… I have LAM Disease along with TSC… I found out a couple of years ago that I also have neuropathy! But I think it is something else going on as well! Someone suggested to me that I may have fibro! Once I read a post in my Chronic pain support group about “the itch,” I thought maybe they are right! The nerves in my body hurt so bad that even the slightest touch will cause the worst pain! Such as the phone touching my face or my children holding my hands…. It’s horrible!!!…. Anyways, back to the itch! For the last few years, I have had this terrible itch that won’t go away!!!! It is so horrible!! It’s in my hands, feet, legs, back chest…. EVERYWHERE!!!!! Does this sound like fibro to you ladies? Thank you for your time <3

  273. Barbara Keddy Post author

    Dear Tina:
    Chronic pain such as what you have heard about from your group often IS fibromyalgia. Doctors are finally much more accepting of this diagnosis and would be helpful to you if you were to be given an answer one way or another. I continue to be astounded with the amount of comments I have regarding itching. That blog is the most researched and yet I have written over 120 blogs about other issues regarding fibro. I hope they will be helpful to you. That level of pain, particularly with regard to your children touching you is very sad. Try very gently stoking yourself on the arm with perhaps a feather. If you find you can tolerate this amount of touch regularly then proceed to ask a family member to gently stroke with the feather until their hands are able to touch you gently. Train your brain so that it will accept touch without pain. Please read my blogs regarding touch, meditation and other such strategies to calm your central nervous system. Kindly refer your chronic pain group to my site and ask them to comment as well too, please. The more we hear from people around the world the more we will be treated with greater respect. Living with chronic pain is not a joyful life but we can improve the quality of our lives despite our daily challenges,
    Best wishes,

  274. Tina

    Thank you very much! I will talk to my doctor! And I will try these methods of gentle touch…. The pain and itching has become unbearable! I will also refer the people in my group to your blog 🙂 Thanks again!

  275. Mia

    As you suggested, I tried lightly stroking myself while I imagine I talk to my nerves and tell them nothing is wrong, as if I’m soothing an upset child. I know this sounds nuts, but it does help a bit. I will start with Qigong soon. Hopefully this wil help a bit more. Still itching, but hoping for better times. Thank you so much for your advice and blog Barbara!

  276. Barbara Keddy Post author

    Great Mia: The only way one can calm down the nervous system through touch is by means of lightly touching the skin. The brain can be changed so there is hope. Touching is soothing and calming but it takes awhile for those of us with great sensitivity to allow the body to enjoy the sensations of pleasant touch. As I keep repeating we are the ones who control our destiny as no one else can do it for us. We are the experts of our own lives.
    Very best wishes to you,

  277. Barbara Homer

    Ran up on this blog after researching ‘phantom itching’. I have been itching about 16 months. Shortly after having total knee replacement-same knee-second time. Started with my legs, then arms, now back and torso. So-all over body itching. 2 dermatologist, 2 allergist, N.A.E.T.treatment, allergy shots, numerous creams, oils, lotions, oral pills, antihistamines and nasal sprays and it is no better. I have totally destroyed the pigmentation to my legs and some parts of my arms. My abdomen, chest and back are a war zone of scabs and dark spots from scabs. And yes I am a retired RN and 64 years old and should know better than to scratch. Never been diagnosed with FM. Had not even thought of it because I don’t have the pain associated with it. I do have gout, but it just makes my toes burn at times. It is a very depressing disease and now I wonder if it is a nerve disease. The blog has helped me feel more human knowing I am not alone. But I do wish someone could come up with the true cure. I may be barking up the wrong tree, since this is FM blog site, but my itching symptoms appear too many times. Thanks for listening.

  278. Barbara Homer

    Cannot wait to see more replies from people and find out what they are doing. Maybe you need to start a ‘phantom itching’ blog that is not necessarily FM.

  279. Barbara Keddy Post author

    Dear Barbara: Thanks for your insight regarding ‘phantom itching’. I have been amazed, surprised, shocked and now overwhelmed with the blog I wrote all those years ago about itching and that has so many comments and ‘hits’. I would never have thought it was one of the most debilitating symptoms of FM. I am happy you do not have this condition but I am stymied about the incidence of itching among women. It is not surprising that you are a nurse. So many of my readers are nurses with this central nervous system hyper-arousal, which is no doubt the cause of chronic itching. Your condition sounds dreadful. Have you tried strategies to calm the CNS which I have written about elsewhere? You are not barking up the wrong tree as I believe that the symptoms of FM are varied and not necessarily all of the same ilk. Highly sensitive people, after a trauma and a life time of stress and anxiety are prone to many manifestations of an over stimulated CNS.
    Keep in touch and best wishes,

  280. Barbara Homer

    Thanks for your response, Barbara. Have definitely had some trauma, and stress and life changes. Retired in 2010, lost my husband of 40 years in 2011(4-wheeler accident) and total knee replacement, just to name the ‘big’ ones. Income and finance changes as well. So my CNS has been in a hyper-stimulated state. I just need some relief. Physical and mental. I will try to find your blog on your CNS calming strategies and I thank you so much for your concern.

  281. Barbara Keddy Post author

    Wow, you certainly have had a great deal of stress of late. I suspect you are highly sensitive and have had earlier trauma in your life. Many of the blogs have references to ways in which you can calm your CNS. I wish you the best as you adjust to this new phase of life.

  282. Anon

    OMG I am not alone! My foot right now feels like a needle is being shoved in it but instead of pain it’s an itch!! It’s maddening!! The only thing I have found that works is putting pressure on that spot! I am going insane!!

  283. Barbara Keddy Post author

    Hello: I have reached the conclusion that phantom itching is the most aggravating symptom of fibromyalgia! My newest blog (not yet completed) will address this issue. It is causing so many people such distress, I cannot avoid a new blog on this issue. Stay tuned!

  284. Bonnie

    I have Fibromyalgia as well. The eye twitching sometimes, I feel cold when the weather is nice, I getting itching attacks across my lower stomach, back and feet and hands drives me crazy, sitting in cool water is the only thing I have found that helps. I have a hard time dealing with the fibro fog, in forgetting things, and I hate it that I can’t even squeeze my own arms without soreness and pain.

  285. DANA

    Thank you, thank you, thank you!! The “itchiness” is driving me crazy but its nice to see I’m not alone. Was dx with fibromyalgia around 2004; the itchness was only occasional but since June 2015 it has been non stop-the last year has been VERY stressful and I’ve noticed a definate correlation. I also have neuropathy, Celiac’s and Hashimotos.

  286. Barbara Keddy Post author

    Dear Dana: Your comments made me realize once more how various systems are affected and other concurrent breakdowns occur such as Celiac and Hashimotos often happen. Thank you for sharing your frustrating with your symptoms with us all.
    Best wishes,

  287. Barbara Keddy Post author

    Dear Bonnie:
    As you can see from the many comments you are not alone with your frustrating and challenging symptoms of this condition we all suffer from on a daily basis. I hope some of the strategies I have suggested in the past for working with calming your nervous system work for you.
    Kind regards,

  288. Julia

    Hi Barbara,

    I wrote to you on July 29 2015 regarding my rash. Since then I have seen an immunologist and he advised me that I have an over production of histamine which is causing this rash. It mimics the symptoms of a coeliac rash. He has placed me on telfast 180mg twice daily and it is working brilliantly!! I have not scratched since and it is such a relief after 3 yrs of constant itch and pain day and night. I’m to be on this for 1 month and then reviewed. Even my symptoms of Fibromyalgia have reduced significantly and I feel almost normal, it’s great, life’s great!! ? I’ll keep you posted.
    Kind regards,

  289. Barbara Keddy Post author

    Hooray, Julia. Please read the blog I wrote yesterday on chronic itching and it coincides with what you say about histamines! Pain and itching- interrelated! The immunologist was right on target! Great news!
    Best wishes,

  290. Janice

    I am like everyone else about this itch. I was told about 10 years ago that I had Fibromyalgia plus I have or had Polio and now I have PPS, MS and I have to many to list. I also have had 30 surgeries and I am on pain medicine and I have been to so many doctors for this itch. I have been told by each and everyone of them that it was something else. I have had it for over 6 months now and I just don’t see know end in sight. After reading everyone’s story I feel for everyone of you. It’s so hard when a doctor can’t tell you what is going on and how to make it stop. I have try so many things and have gotten so many shots with no help at all. I have cried so so many days (everyday) and I just want it to stop. I have told the doctors the same story over & over again and I know they think I am going out of my mind but I am so sick of changing all my things from washing my cloths to washing in there soap to using there creams all with no help. The last doctor said I needed to go and get off my pain medicine because this is what is making me itch. I have try to tell them that it feels like something is moving under the skin and then I itch until it bleed and then it will stop for a while. Everyone’s story is so much like mind and I am so so glad that I found this web site and now I know that I am not going crazy and I know all the doctors think that I am. I have never had a doctor to tell me not to come back again because he can’t help me, I ask the nurse are you sure this is what he said or is it that he doesn’t know and he doesn’t want to tell me that. I got know answer from her on that. So I went back to see another Dermatologist and he did 2 skin scrapes on me and came in the room and said that I needed to go to the hospital at UAB (3hours away) to get the help that I needed to come off my pain Meds because this is what is making me itch. This itch first started on a spot on my back to all over my back then down to my butt and then on both sides of the top part of my legs. Then 2 months later it gos to my belly my boos and under my arms. Then 2 months later it gos down my legs down my arms but it’s been on my head since the beginning and yes the hair is falling out by the hands full. I just wanted to say thank you all so much for sharing your story’s because it has helped me to better understand what is going on with me and just how this Fibromyalgia will and can do. God bless each and everyone of you all.

  291. Barbara Keddy Post author

    Dear Janice:
    Ah, what are we to do? I once heard a well known professional give a lecture on fibro and did not know that itching was such a serious problem. In my view, next to pain and fatigue it seems to be the number three complaint!
    I hope that the comments of the many others you read about here are helpful to you.
    Very best wishes to you,

  292. Rubiya

    Iam 29 yr female suffering from itch coin shaped pale white patch on foot it is dry since 2yr 6 mnths earlier it was just a pimple but it was itching i started itching & it increases its size into coin some times i dig it by needle becos of itching but after 3,4 days its skin comes back again i have consulted 3 dermatologists they all told its eczema and gave ointments but they didnt work out on me

  293. Barbara Keddy Post author

    Hello Rubiya: Do you have fibromyalgia? It is difficult to know from our e mail. If it is eczema and not related to fibromyalgia then it may have a different cause. Hopefully the dermatologists will be able to find something to give you relief soon.
    Best regards,

  294. kitty

    Rubiya- From my experiences with fibro itch, research of articles and the comments on this board, your itch doesn’t sound like fibro. I urge you to read articles and the comments here and decide for yourself. Unfortunately, the fibro itch and other itches cannot be stopped sometimes. You must fight on and be your own advocate. The u.s. medical system sure doesn’t care about you!

  295. Amy P.

    So thankful I found this article. I have fibro along with the darn crazy things that come along with it. My siblings have lupus and other auto immune diseases so I am in the progress of having that diagnosed as well. My itching is off the charts off and on. I have scars on my hands and feet from itching. I am trying to match connections to see what times it comes on. So far I have made a connection that during my period it is at its worst. I do believe major stress also brings it on. I am usually in a constant stress cycle though so it is hard to pin it down. My rheumy says it is possible it is connected to fibromyalgia. I would rather have the pain that we all suffer from than the itching bouts. I have had to make drastic changes in work and home life so I feel guilty not working like I normally did. Trying to get rest to help with fibro gives me stress. So it’s a new learning curve to accept this madness. I have always just plowed through feeling crappy but now that it has a face it’s harder to accept.

  296. Barbara Keddy Post author

    Aw dear Amy: As you can see you are not alone with this dreaded itching symptom. Changing of seasons is generally a bad time too so try to keep calm and as stress free as possible. Feeling guilty is a common phenomenon among women so don’t waste time on it. Rest should not cause stress. You deserve it; your body does; your mind needs it!
    Very best wishes,

  297. Deborahlynn forbes

    Amy, I also will repeat. You are not alone. I went through the itching stage for sometime. I was tearing my back face arms and anything else apart (and I mean everything apart). The doctor gave me medicine and it stopped it. I would have to research my medical file to see what it was. Sadly in some ways people still think fibro is a joke disease. What they don’t understand is it usually is a dual diagnosis disease. Coming from trauma, arthritis, MS Lupus and many problems. We push our body to max thinking that’s what mom’s, wives, and strong independent woman should do. The reality is we need to slow down not rev up. You must take time to do that or you will become disable like me (I do have other diagnosis that contributed). I was a work-a-holic and now I have caretakers. Talk to your rheumatologist now. Don’t wait for next appt. if you don’t have a rheumo. get one. Best wishes and prayers

  298. karen

    Read a few years of comments. First, i do have fibro..about 15 yrs. Ive since developed neuropathy and waldenstroms. I inutially sse a rhrumatologist. For the last yrn yrs have worked with the Baystate Pain Vlinic. My physician is also an oncologist, but mit my primary. He is an expert in fibro. Initially he discontinued all my meds which were interacting with eachother and put me on only a few. One was off label (marinol) which was life saving for me. At this point, i would suggest that if you have, or feel you have fibro, seek a pain specialist, trained in the syndrome. Dont rely on your primary care or rhrumatologist who are care limited. ..and never take ibuprofin for long periods. Use blogs to touch base with others and get hints because different things work for different people. Its not an illness with a blanket treatment. If your gut is not comfortable with one provider, go to another till you are comfortable. You need to really like and trust your doctor/specialist, because your going to be together a long time. Someone educated, trained and specializing in fibro will eliminate the need to doctor hop to address symptoms as they will recognize them. They also address med needs and monitor them all. Not many respond to brain remapping, for various reasons, therefore its logical to address pain receptors directly. Bottom line from me right now is find and trust your specialists.

  299. Ashley

    It’s 5:51 am and I just googled this and came across your article and posts. I can’t tell you how comforting it is to know I’m not the only one that experiences this and I’m not crazy! I will sometimes have episodes like this morning where I itch so bad for no apparent reason. I dig at my skin so much that I create bruises. It’s like my neurotransmitters are in overdrive. I have tried lotion, hydrocortisone cream and all different types of topical treatments with no relief. The only thing that seems to calm it is to run the area that is itching over really hot water for several minutes, dry it thorough and then put a piece of clothing on that covers it. I them have to make sure that even if I have the slightest inclination to scratch again that I don’t. This can be a little frustrating when it’s in the middle of the night or when I’m at work. Sometimes I can’t always do that! I have been diagnosed with lupus and fibromyalgia and never realized it was connected. Thanks for bringing some comfort to someone that needed it during one of my itching spells.

  300. Barbara Keddy Post author

    Ah, my dear Ashley: Itching is indeed a most aggravating symptom. Mine is almost exclusively on my back. I have a back scratcher and yet it doesn’t reach some of the places. It is easier when it is my hands or feet. I can understand what you are experiencing and to suffer with lupus as well; you have my sympathies. Keep in touch,

  301. Bobbie Jo

    Finding this article was a relief. I’ve had fibro since 1997. I have never mentioned the itching to my Doctor. I always just thought it was dry skin or something that just happens. But I get it on my legs just above my ankles. I scratch till I’m raw. I also get it on the bottom of my feet and hands. I’ve tried lotions and heat but it only helps for about 30 Mon. I can’t do ice cause I’m very sensitive to cold. And that is only getting worse. When I get ice for a drink it has gotten to where it hurts. I don’t know if that is from the fibro or not.
    But now I know to bring it up to my Doctor even though she doesn’t treat fibro. But I don’t have a way to get one.
    Thank you for all the info I have received from finding this site…

  302. Barbara Keddy Post author

    Hello Bobbie Jo: I know what you mean about not mentioning the itching to your doctor. There really isn’t very much that can be done with this symptom except the usual recommendations for fibromyalgia in general: light exercise, warm baths, meditative programs like mindfulness meditation, yoga, Chi Gong, and Tai Chi. Like you I am very sensitive to cold. Keeping skin moisturized with non scent lotions may help. My serious itching is on my back and that becomes complicated for scratching!
    Best wishes,

  303. carrie hale

    I’ve been having severe itching. I also have allergies and hives and this wasn’t so much a rash as just a maddening itch. Other than neurotin I’ve discovered a soft bristle brush helps. They gave me some for my daughter with sensory issues, and I tried it out of desperation. For some reason the soothing stimulation gave me more relief than I’ve had in quite awhile. I believe the ones we use are actually the brushes doctors use to scrub in, but any soft bristle brush should work.

  304. Barbara Keddy Post author

    Dear Carrie:
    I too use Gabapentin but had not thought of the soft bristle brush. Great idea. Does your daughter have fibro? it seems as though she does given that sensory issues you discuss is the definition of fibro.
    Thanks for your comments,

  305. Fleur

    8 years ago my mum died I lost my job and I was having a hard time in other ways. I developed an itch on my back. My doc laughted at me and told me to go away and stop eating his time. It has gone on for 8 years I get tiny ref lumps. Last year my husband died and the itch bcame so intense all over my body my hands and feet feel like they are on fire. A few weeks ago I began to experience joint pain so bad that I am walking with a limp and head aches. My doctor puts everything down to anxiouty Iv never consider that it could be fibroyoyalgia but now im wondering. I feel tired but I’m very low after losing my wonderful husband. None of my family have anything to do with me any more (including my two daughters) as they think im crazy letting an itch get me down so much I think they think im an attention seeker. Iv always felt so young but suddenly feel old and so ill all the time. My family think itching is not an illness but I dont sleep or ever feel relive. My quality of life is so poor now im experiencein pain too I can’t remember the last time I smiled or laughted I cry 24/7 scratch and cry..

  306. Jeana

    My feet are constantly itching an burning I have noticed small cuts forming at the bottom of both my heels. I scratched them an then put a lot of aloe Vera lotion but nothing seems to help me, this all started when I move back 2 years ago. I was living in Fresno for a long time of course I wore flip flop’s but now here in Eureka it’s cold an different. What can i do??? Anything helps thank you.

  307. Barbara Keddy Post author

    Dear Jeana: Do you have fibromyalgia? It is unclear from your message. Avoid flip flops, by the way they are so bad for feet and back!

  308. Barbara Keddy Post author

    Dear Fleur:
    Yours is a very sad story indeed. You have my sympathies. You really need to find out the cause of our itching as here are many outside of fibro. Please seek the help you need to deal with this itch and sorrows you are experiencing.
    Kind regards,

  309. Linda Peckally

    I have had fibromyalgia for 20 plus years have all the symptoms in comments left on this sight. Have had a severe rash on arms sometimes cheat legs back. Also on my scalp. I also with in the night not realizing that I scratch and wakeup with scratches and boost sores. Have been to 5 dermatologists allergist GPS cancer doctor to no avail. 3 of them thought I had lupus no butterfly rash on face and blood tests negative. Also thought to have leukemia with negative testing. Restless leg syndrome and itching have me crying and praying for relief. Feel so hopeless. Sometimes I just sit and cry. Please find something to help my self and fellow suffers. Have tried everything. Was on 28pills a day which made quality of life nil. Slowly took myself off medicines and am down to 3 prescriptions. I was a total blur for 3 years and refuse to live like that again. Have been trying to find photos of fibromyalgia rash to no avail. If anyone knows how to get relief I am begging for help. Was a director for a not for profit for 10 years and walked 4 miles a day for 20 years. Am no longer able to do much walking due to severe pain in legs and hips after few minutes. Always loved my exercise and miss it.

  310. Barbara Keddy Post author

    Dear Linda: I know by now you have read the many comments of others and find some solace in them. Walking is indeed a key strategy for improving your state of mind and the body. However, I know what you mean by pain in the legs and hips. It isn’t easy. I have recently had a hip replacement and getting back to walk even with a walker is difficult. Restless legs is a challenge for me also. As for the rash I wish I knew the answer to this perplexing problem. We keep seeking answers and often find little that will help. My sympathies are with you. Take care.

  311. Abbeymomx2

    I was diagnosed with fibro after an accident. I stepped on a cat at the top of the stairs and flew up in the air landing flat on my back at the bottom half of the stairs. I cracked my T6 vertebrae and when I went to the ER, the Dr wouldn’t even do an xray thinking I was drug seeking due to the pain management med I was on. I also had post concussion syndrome. The reason I mention this is because I have always heard that a major trauma can engage fibro if you are going to have it. I got to the point where you couldn’t touch me anywhere. When I was diagnosed in the following months, I was told fibro is totally bilateral meaning if you don’t feel the same pain on both sides of your body, it isn’t fibro. Well at that time it was bilateral. I past that point now and when anything hurts, everything hurts. Now I had minor skin irritations before my fall. But since then, when I itch, it turns into a scratching free for all. Ironically this past but has been bilateral. If I have a rash on one calf, the other calf will get one too. My biggest problem now is its affecting my whole right leg and working up to my whole left leg. I have a very high anxiety life so I am always stressed out. Massaging and cold packs do help especially if I get it on my back surgery incision which happened more a few years ago. I don’t really get them on my arms but I have had itching in my labia area. Yes I have been to the Dr several times, had biopsies done to no avail but it’s totally frustrating. My husband isn’t supportive anymore because he doesn’t understand why my days and nights are backwards. Yes I have insomnia as I write this at nearly 6am. I have several creams that don’t last for any of the out breaks and they fade as fast as they stop itching. But I am ruining my skin by scratching and I am sick to death of the meds I am on for regular pain management because none of the fibro meds helped. They all made me sick with my is and I cannot take any NSAIDS at all. So I virtually have no anti inflammatory relief. I wish people would understand it more. Fibro has made my muscles atrophy everywhere but my gut. Well, thanks for listening and one comment about the woman who wanted to be Calle crazy bitch or something to that effect. She mentioned she was on elavil…yeah it will put you to sleep, but that’s where the bitch comes in. That stuff made me so angry when I took it several years ago, it’s actually on my allergy list. Pain free hugs everyone. Goodnight 🙂

  312. Barbara Keddy Post author

    Dear Abbey:
    Unfortunately your story is not unique but mirrors the experiences of many of the readers. I too cannot take any NASAIDS either, mainly because I have heart disease. Without anti inflammatory relief I suffer from arthritis, having just had a hip replacement 5 weeks ago. Now I suffer from the pain of the other hip. Surgery for those of us with fibro is one more assault to the body. Like you Elavil did not help either. I have found some degree of relief with Gabapentin, however.I know of many others who do not have bilateral pain so I don’t accept that fibro pain and tenderness MUST occur on both sides.
    I am so sorry your husband is not supportive but I hope that you have other support sysems in place.
    Thinking of you with kind regards,

  313. Abbeymomx2

    Thank you Barbara for your reply. I get tired of sounding like a broken record around here. Today is migraine day. I had a panic attack for the first time in years last night and I am assuming that had something to do with it. This past week I have had hot and cold sweats keeping me.from sleeping when I can sleep. My insomnia used to finally give up about 5am, now I’ve been up til nearly noon every day. I wonder what normal feels like any more. Hope all of you are having a better day than me today 😉

  314. Barbara Keddy Post author

    So sorry you have a migraine. Anxiety and panic attacks I understand well and I am with you when you relate your insomnia. I have been plagued with sleep disturbances for many years. I have night terrors which are always very frightening. This is what normal feels like with me. Trying to be upbeat though. Trying to meditate more consistently…

  315. Barbara Keddy Post author

    Hi Linda : wow it is certainly a powerful drug! Does she have arthritis and or lupus? I realize there are other uses as well. Hopefully she doesn’t have side effects. Thanks for your comment!

  316. Linda Legari

    She has Hashimoto’s and sees my Rheumatologist since I too have an autoimmune disorder. RA and lupus although my lupus is in remission.

  317. Chris Kaybee

    I’ve had Fibro symptoms since I can recall. Probably around 8 years old. Was officially diagnosed with Fibro back in 1997 when I was 24. I was online tonight(actually 3am now…. insomnia… etc) looking up possible causes for my widespread, constant, debilitating itchy…. I’m itchy from head to toe, including my scalp and soles of my feet. I saw results for yeast infections, lice, scabies, and a million things that I know I don’t have. I’ve been itchy before but, never to this degree. I’m scratching so much that I’m leaving actual scratches on my skin. I haven’t slept well in about 3 weeks because I was helping my Father for a week after was released from hospital to his home ( he lives alone and wasn’t able to care for himself after an emergency surgery). My Husband stayed with me at my father’s to help when he wasn’t at work but, it was extremely taxing on me. I am currently in a horrible flare-up. Dad is once again in hospital and getting out soon. I’m very stressed over entire situation. I cannot stop scratching and now I’m thinking it very well may be my Fibro! I’ve been thinking I was exposed to something or had widespread yeast…. Took several Diflucan, used Monostat vaginally and Aveeno anti-itch cream all over body for over 1 week, without improvement. Trying to get into see Dr tomorrow but, not knowing what will happen. I can’t sleep and can’t stop scratching unless I’m rubbing my skin to alleviate itching. I can’t believe this is most likely Fibro related but, it must be. Still going to see Dr in case it’s not but, not very hopeful for cure/treatment. My scalp, hands, feet, and groin are are worse but, everywhere, even including my face is now itchy. It’s so bad that I’m rubbing or scratching with both hands constantly. It’s taken me forever to write this because I have to continuously stop to scratch or rub areas. I’m actually hoping that it’s an allergy or reaction because then I can get some relief! Thank each one of you for sharing…. It’s helped me immensely! I will put this site in my favorites and hopefully be able to check-in later. Just an FYI…. No new soaps, shampoos, detergents, foods, meds, …etc. Just a whole lot of extra stress that is causing a painful flare and most likely this horrible itching. I do actually get little bumps where I’m itchy though (before scratching) so, in hoping I can update you all very soon saying I’ve got a cause other than Fibro! Still trying to be optimistic…lol! If there are any typos, please ignore them, I’m very tired. Also, 1 question, does anyone else have to sleep with a fan assumed on their feet, especially soles of their feet due to them getting too hot and sensation of burning? My feet must literally be very cold in order to not feel like they’re on fire! Been this way for many years now. Any answers to this would be very helpful. Sorry for the “novel” here and thanks again!

  318. Barbara Keddy Post author

    Dear Chris:
    Your story is extraordinarily sad to read. While the other comments on this popular blog are also frustrating and challenging, yours is an exceptionally intense itching account. I wish I had a magic wand that would alleviate your misery. It appears that the ways in which to calm your overactive central nervous system is through the self management strategies as the only recourse. Discipline regarding walking, mindfulness meditation, yoga or ChiGong or Tai Chi, talk therapy are the main ways to alleviate the intensity of your symptoms.
    Very best wishes,

  319. Chris Kaybee

    Thanks for responding Barbara. The itching has been horrible but, now there are times when it feels like a “normal” itch. In other words, there are times now when I get a reprieve for an hour or so. Dr. tested me for Diabetes and it came back negative…. I’m very thankful for that. Now believes I may have a vitamin B deficiency. We’ll have to wait to see. I’m going to take some Riboflavin and see if it helps. I know some require vit. B injections every month or so but, I’m going to try the tablets first. I’m still extremely itchy and sleep deprived but, a bit more hopeful that this NE vitamin will work. Also, Dr told me to take 50mg of Benadryl 4 times a day for 10 days. That’s double the dosage on bottle but, it’s just too shit down the overflow of cortisol in my system for now. It’s helping a bit hence, the slight reprieve at times. It just makes me more tired but, I’ll take it in order to get short reprieves. I meditate several times a day to help cope with what’s going on and I have more appts next week with Drs. Hopefully, they will find something more I can do to help alleviate or even better, stop this completely.

  320. Barbara Keddy Post author

    Oh, great. Sounds like it is subsiding somewhat? The central nervous system is over-wrought and in need of some calmness, for certain. It seems to me this is the issue and most products or medications do not seem to work very effectively. I remain intrigued with the amount of comments on this blog. I would have thought it would be mainly about pain but it seems that itching is maybe the most aggravating of all symptoms.
    I also seems to me that it is up to the individual to do all we can to reduce the stress and anxiety in our lives to help with central sensitization…and subsequently with this hateful ‘symptom’.
    Best wishes,

  321. BJ

    Dear Chris.
    I know what you are going through I have the same problem but it’s not everyday anymore. I am now very sensitive to cold. Bit before I was I would soak in a chilled bath for about 20 min or so. But the soles of my feet are the worse. I find my self grabbing something with an edge and use that to scratch. I have found that Tinactin foot spray. ( w/o the powder) relieves it for awhile and if its at night after I spray it lasts long enough for me to go to sleep. I’ve tried the off brands but they just don’t calm it down long at all and that’s if its 1 of the ones that calm it at all.
    I hope this helps even if it’s only a little. If you find anything that helps even better plus anything for the whole body please let me know. Thank you.

  322. Kimmer03

    I just read most of these comments from over 10 years ago! I’m amazed that every single symptom that I have that has NEVER been diagnosed is in this blog ! I have been in pain for over 13 years and itched where I have bruises as well as welts on my body ! FOR YEARS … I’ve taken numerous pills and nothing ever helps . I thank god I read this tonight . I’m scheduling a Doctor’s appt tomorrow.

  323. Rita

    I stumbled onto this page quite by accident this itchy September morning. I have Sjogren’s Syndrome (systemically) and already have about every symptom and side effect in the books but the itching has gotten worse only recently. Previously it was something that came and went and I just “chalked it up”.

    Living with a disease like Sjogren’s that dries out every part of your body both internally and externally (again, my disease is systemic) is hard enough but living with the symptoms of something as mysterious as fibro is almost as bad – not quite, but almost.

    I do find that stress makes the periodic pin-prick itching much, much worse. We recently had a visit from our son whom we had not seen in nearly a year. It was wonderful to see him and I loved every minute of it but by the time he flew back home and after all the visitors we had while he was here – I was quite simply “ill”. And it takes a while for things to settle down to a dull roar itch with which I can cope.

    If anyone else has Sjogren’s and fibromyalgia I’d enjoy your comments.

  324. Barbara Keddy Post author

    Dear Rita: welcome to the site. It seems there is a relationship between fibro and Sjogren’s so it will be interesting to see if you have many responses.
    I know exactly what you mean by the stimulation of company. Love having them but oh how difficult with all the emotional chaos involved not to mention the physical work. We have just had two sets of family visit and like you I am now ill. It is taking me forever to let go, relax somewhat stop holding my breath and regain some energy.
    I hope you get some responses to your request.
    Keep in touch,

  325. Barbara Keddy Post author

    Oh dear,BJ, soaking in a cold tub sounds awful to me! I find cold to bring on intense pain. I guess the question is whether or not itching is worse than pain? I hope you find some tips that can help you somewhat with the agony of this itching.
    Best wishes,

  326. Barbara Keddy Post author

    Dear Kimmer: please let us all know what the doctor told you this week. It isn’t always easy finding a sympathetic physician.
    Good luck, take care,

  327. Ellen

    Wow, I’ve only just seen this blog post from 2009 (as you mentioned it more recently, Barbara). Just by reading a few of the comments it is so clear that itching is a major symptom. I have itching every day and it drives me crazy. I personally have found Lyrica to take the edge off a little. In the later half of each day (perhaps when my body is getting tired) I also get a sensation that to this day I simply cannot describe! It is like a general severe discomfort all over my back – a kind of itchy, crawly, unsettled feeling. It won’t go away unless I have a bath, which ‘resets’ me temporarily. Anyway, it is so validating to know we are not alone living with this isolating illness, thank you. E

  328. Barbara Keddy Post author

    Yes, Ellen! I have been shocked at the popularity of this particular blog! I have found that Gabapentin does help me with itching. I am at the point that I think only Lyrica or Gabapentin help as far as medications do in general! I am surprised that more people have not written about itching as extensively as the other symptoms!
    Best wishes as always,

  329. Kelly

    Itching is ALWAYS related in some way to poor liver and/or gallbladder function.

    Look at all who have posted that taking this med or that med, or a combination of meds have made things worse. First of all that’s because they just temporarily suppress symptoms, and do nothing to address the cause or causes of fibro or whatever chronic illness one has. (The exception to this may be antibiotics or antifungals, etc.)

    Anyway, these problems are fixable, if you look into liver and gallbladder issues and how to improve their function.

    Google “Cholestasis” and “better” or “much better” or “itching” and “gallbladder”…and you’ll turn up more info.

    Note, it doesn’t mean you have any serious liver disease, although that might be a possibility. Just that your liver is probably overworked, and/or your gallbladder isn’t functioning at it’s best.

    Hope this helps.

  330. Barbara Keddy Post author

    Thanks Kelly: Everyone should have their liver function tested after taking meds long time! Good advice!
    You are right. The cause of fibro is anxiety that resulted in a hyper-aroused central nervous system. Meds are to help with masking of itching but will not cure it! A big difference.

  331. Valerie White

    Thank God I’m not going crazy! I was diagnosed with FM this year but looking back, I believe I’ve had it for over 15 years. I was lucky or unlucky to finally have it all come together, with all 11points being severely painful all at one time. I am on Cymbalta, Lyrics, xanax, and norco. I try not to take my norco consistently. I also have arthritis in my neck and spine, thus the norco. Just recently I was also diagnosed with Sciatica. I feel a mess lately but try to stay positive, exercise, and eat healthy.

    I have had, what I call deep itches in my ribcage, right under my underarm and stomach area for years. I use to hit my areas so hard to try and stop the itch. But this week my feet have been hot and itchy for no reason. I just couldn’t take it anymore. When I came upon this website. BINGO! Thank you for giving me my answer. Its just another symptom I can add to my FM list. My husband calls me the most itchiest person ever.

    I’m pretty sure mine is stress related and I’m so glad I have an answer. It is so nice to know that I’m not just a hypochondriac. I can finally put a name to my enemy.

    Is there any advice you can give me to help me re-train my brain to lessen the severe pain of FM. The fatigue and severe pain at times feels as if I got hit by a bus. And oh the darn itch, that darn itch.

    Thank you Sisters of Fibromyalgia! May we all be able to scratch that itch one day.

  332. Barbara Keddy Post author

    Dear Valerie: of course you aren’t going crazy?! You are a strong woman survivor! We are the sensitive kinds of intuitive people that the world needs now amidst all this horrible chaos.
    Please read my latest blog on medical marihuana and comment on it. I believe this will improve the lives of many.
    Kind regards,

  333. Valerie

    Thank you Barbara.

    I will read your latest blog. It is very kind of you to comment the way you did. You are so correct about the sensitive kinds of intuitive people. Positive minds positive outcomes.


  334. Barbara Keddy Post author

    Dear Valerie: thank you for your two comments. I am happy you wil read and hopefully comment on my blog about medical marijuana. Avoiding stress, walking, mindfulness meditation are especially important during these holidays.

  335. Margarete

    I’ve had FM for 25 years and had all of the above symptoms from itching for the last 5 years. Starting with a wave throwing me to the ocean floor twisting hip and knees and bedridden for 3 months, I got shingles for 8 weeks before subsiding to mild dermatitis turning into temporary vanishing and reappearing excema with bouts of herpetic dermatitis visible all over the front of my body, waist and under, around and over breasts. Sometimes less, sometimes more, worst at night, little in the day. I seem to be
    allergic to my own super fine hair one invisible hair often triggering a whole hour long episode of itching over my face, the in- and outside of my nose and ears and rubbing my eyes and scratching the rims of my eye lids. . . . .then goes to the scalp for which massage helps for awhile.
    I usually sleep 4 hours a night, but lucky getting
    lately 6 hours of sleep the third night.
    What helps me is lots of magnesium – up to 1500 mg a day, divided; GABA 500-1000 mg, Inositol powder 500-1000 mg at night. All lotions, baths, salts etc. only help for 1/2 to 1 1/2 hours. No white sugar in food, but fruit are a must, as well as veggies, coconut oil 1-2 tbsp/day, almond butter, omega 3 (krill is best). Calcium (1-2 organic potatoes which have magnesium for proper absorption); 1/2-1 cup of plain Kefir with a bit of fruit juice for taste or a touch of Stevia for taking your alternative supplements B complex,
    and antioxidants like 300mg Alpha Lipoic Acid(ALA) and B1 Benfothiamine and Biotin for
    mostly vegetarian people. 500mg 5HTTP for the brain when it’s bad.
    Never knew that so many women have FM itching. . ., mine gets worse with sudden weather changes.stress, or when I’m “itching to do/finish some -physical- time consuming task but can’t get to do it because too many things getting in between. . .”where does the time go ?”
    Hope some of this helps sombody somewhere,
    (from a FM pioneer senior plus of almost 80 years.). Cheereo and best Love to All! this helps ..

  336. Barbara Keddy Post author

    Ah Margarate: Your comments are so helpful. You have certainly carefully become your own physician! These hints may work for many and I hope others try some of them! We are both pioneer FM , me of 78! Do you find that FM gets worse with age? weather changes are dreadful for me too. Did you read my recent blogs about medical marijuana? It has helped with pain. I hope you are in an area where it is legal and you can try this. I haven’t had any itching since I have been on cannabis oil!
    Keep in touch; we oldsters can help those who are younger!

  337. Connie

    My right and left thigh itch the bones itch and my both kneecaps I have had this problem all my life when I was younger I would massage those areas and get nausea but that was yeas ago but I still have the itch problem do they have a name for this..

  338. Barbara Keddy Post author

    Dear Connie:
    Pruritus can have many causes. Have you been diagnosed with fibromyalgia? Hopefully the many comments on this blog will help you with some strategies to at least temporary relief. Please check with your doctor to rule out any other causes for this itching.

  339. Jeff Potter

    Two of my three sisters and I have an excruciating itch-like sensation on both feet from time to time. It is under the skin and is connected to the nerve ends. Our mother and grandmother both suffered from the same illness. We do not have FM. We have seen a lot of doctors and the only things that provide some relief are B-12 and extra strength Benadryl gel. It started in all three of us after we were 50. It is a symptom of stress. I keep track of mine and the intensity has dropped over the years from 9 or 10 out of ten to around 3 out of 10, and the Benadryl makes it stop within 10 – 20 minutes. I noticed that there was a man above who seems to have the same thing, so I decided to write. I would be very happy to take part in any research or tests. I’m in Boston, but haven’t been able to find a doctor who knows what this is. If there are any doctors who read this and can advise or want us to participate in trials, please write. Thank you!

  340. Barbara Keddy Post author

    Hi Jeff: This is indeed mysterious! I don’t know of anyone doing research studies with people who have such aggravating itchiness! It certainly does resemble the symptoms that many FM people suffer from intensely. Good luck in finding out about this genetic condition!

  341. Rachel

    I too have had this horrible itching since I was fifteen I will be 28 here soon. I’ve done lots of googling and I believe it’s neutopathic itching. Look into it. I also have scoliosis that causes my vertebrae to compress pinching the nerve which may cause the horrible itching. I think that the fm may aggravate the nerve causing it to act up here and there for you. But for someone who had this every day it’s maddening. I’m on topamax but it’s effecting my memory so bad I can’t function or even work. In trying to get off of it for many bad side effects. I’ve lost 37 lbs and I can’t afford to lose no more. I’ve lowered the dude fifty mgs and the itching is worse than ever before. It’s time to try new options. I read somewhere that weather irritates it so your absolutely right.

  342. Barbara Keddy Post author

    Hi Rachel: I’m sure the many comments on this blog show the extent to which itching is a serious problem of FM. There is little doubt that it is a central nervous system issue. If you have read my other blogs it is a topic I discuss frequently. When we calm the nervous system our symptoms diminish. Stress, excitement and pushing ourselves too hard all exacerbate the itching. Plus, little doubt weather changes contribute to all our symptoms!
    Good to hear from you and so sorry someone as young as you are so badly affected.

  343. kitty

    In fibro it is said to be caused by hypersensitive and active nerves as is the pain. Gabapentin works for the itching and some people get help from pentagabalin.

  344. Sharon

    I’m am SO pleased to have found this site/subject matter covered! I’m in the UK where, if you mentioned Fibromyalgia, you are still looked at as if they think you should be burnt at the stake! Slowly, slowly attitudes are getting better but the whole thing is still a nightmare. I’ve had the condition for nearly 40 years now (I’m 55) but it was only properly diagnosed about 10 years ago. My life from late teens has been hell on earth (no lie or exaggeration!) I had post-natal psychosis following the birth of both my sons, the first time (32 years ago) I spent nearly two years in a psychiatric hospital and thought I’d never recover (we were more prepared 10 years later when my second son was born – but it was still a risk in having him and far from plain sailing!) Things were severely complicated the first time round because I became involved (unfortunately) with a group of Evangelist Christians who saw my condition as being from a demonic source and I was ‘exorcised’ (Deliverance Service), hence the even longer stay in psychiatric hospital! This is actually just the ‘tip of the iceberg’ to all that has happened to me during my life …

    From the beginning I have had chronic tinnitus (worsening over the years) and balance/vertigo/dizziness problems. I have been up every path and avenue in existence in order to find alleviation/relief/help with my condition, and the list of symptoms that I have is almost endless it seems …

    However, recent months have seen an increase in the (usually) fairly mild itching that I get – burning soles of feet, palms of hands almost to the point of pain – and all over body heat/feeling of insects crawling etc. etc. These are the symptoms that have brought me to this site. I do wonder if stress is the key issue here as we have been trying to move house (to no avail) for the past six months, my elderly mother causes no end of problems/stress with her Alzheimer’s and her refusal, at nearly 91, to go into a care home, various other illnesses have swamped the family – including my own diagnosis of possible cancer (still not totally ruled out) due to unexplained menstrual bleeding (after 7 years of none whilst taking HRT) when I should be post-menopausal! I am also currently fighting to get back benefits that have been stopped – as usual Fibromyalgia is not being looked at as a ‘disability’ and I am being branded (not for the first time!) as a liar by both the medical profession and welfare state. Whilst I weep buckets over the injustice of it all, there seems to be no way out …

    I am now under investigation for the hormone side of things but find myself in the ‘Catch 22’ situation of a hysterectomy possibly being my only choice – but I and the consultant know that this will be too much for me with my Fibro. What a life! No wonder I itch I suppose!!

    I’m not sure if you will ever get round to reading/answering this but I feel heaps better just for sharing to be honest – and I think that’s the thing with Fibro; we all unite in the thought that we’re actually not mad but sad!!!

  345. Barbara Keddy Post author

    Dear Sharon:
    I am always so amazed that we survive all the trauma we experience in a lifetime. It is little wonder that there are so many of us suffering from fibromyalgia, the result of years and years of living with stress, anxiety and memories that are difficult to obliterate.
    Sometimes I am both mad and sad.But, it is the fate of the world it seems, with so much chaos and hate raging at the same time as our individual demons plague us.
    You aren’t alone and many of us share exactly the same physical symptoms as a result of the trauma in our past (and perhaps present) lives. We are highly sensitive people in a world gone awry.
    Very best wishes to you, Sharon,

  346. Hank Barnes

    My wife Linda was diagnosed with FM in 1990. About 6 months ago the itch started in her feet. We originally thought it was from her neuropathy she developed from chemotherapy in 2014. I have read online about hundreds of cases of people who describe having “neuropathic itch”. This morning I read Barbara’s blog and it was the first time I had ever heard of a connection between FM and severe and chronic itch. The itch my wife has experienced began mildly enough but has developed into a fiendishly tormenting intense itch which yesterday became the worst yet, sending an indescribably hellish itch pain right down into her foot bone which lasted an hour until the Aveeno she applied started to calm it. It was the first time I had seen my wife literally sobbing from the misery it was causing her until it eased up. She has learned never ever ever to scratch. It gives no relief and makes it worse. The way she copes is by applying Aveeno sometimes, DMSO gel sometimes and by frequent use of 2 types of vibrators held against the itchy areas. The first is a Sonicare electric toothbrush (has to be Sonicare as they vibrate about 250 x per second) which she turns on and uses the back end (not the brush side) of the brush to move back and forth aganst the itch which usually calms the itch. The other is called a Magic Fly Mini Penquin Massager (bought on Amazon for about 8 bucks) which has a lower frequency oscillation than the Sonicare but actually does the trick sometimes when the Sonicare does not. I got the idea for using vibrators from some of the neuropathy blogs where others had mentioned they were helpful. Using the Sonicare was actually my idea which came about because there was nothing else around our home that I could think of that vibrated. It was a godsend for Linda who has been using my old brush for a few months now (I bought another one for me). I sincerely hope some of the poor folks writing in on this website will try this themselves. It really has been a tremendous source of relief for Linda. She uses the toothbrush as her first go to remedy with the Mini Penquin as her backup. Then she uses the Aveeno and DMSO gel when things get super intense. A couple things I have found online that show some promise but we haven’t tried are Remitch (Nalfurafine) and tofacitinib . Another thing still up the pike a ways is Tetrodotoxin, a neuropathy treatment still in trials that might help FM itch as well. Here is a link if someone is interested: Good luck to everybody, I wish you all relief and hopefully a cure down the road.

  347. Barbara Keddy Post author

    Dear Hank: Your comments were much appreciated. The suggestions about various strategies are extremely helpful and I know the readers will benefit from trying various options of your intense research findings. You have certainly helped your wife tremendously.
    I have been using cannabis cream and it is very helpful. But then I also have been taking medical marijuana oil for a couple of years now and it has helped with many of my issues. I have never ever smoked anything nor would I recommend smoking cannabis but the cream, which is lovely to rub on, and the oil which I take under my tongue seem to do the trick.
    Very best wishes to you and your wife,

  348. KITTY

    I call BS!!!!! This sounds like more of “it’s all in your head. Just go to a shrink and all will be well.” I believe that CBT can be hepful. BUT fibro is physically based. Latest research is showing differences in the brains of fibro sufferers’ neuroinflamation
    “Finding an objective neurochemical change in the brains of people who are used to being told that their problems are imaginary is pretty important…” Marco Loggia

    Jarred Younger has believed for quite some time that the glial cells in fibromyalgia patients’ brains are spewing pro-inflammatory factors and causing neuroinflammation. That neuroinflammation is, in turn, tweaking their pain and other neurons, resulting in a hypersensitivity to pain, sensory stimuli, sleep problems, cognitive problems, etc.

    It’s an enticing idea. If low levels of neuroinflammation are going to be found anywhere, one would think they would be found in FM. The central nervous system issues have been well validated, and indirect evidence of neuroinflammation has been found before. No one, though, has actually shown that neuroinflammation is present in fibromyalgia or, if it is present, that it’s being produced by glial cells – until now.

    This FM PET scan study was produced by an unusual combination of Swedish and Harvard Medical School researchers. Apparently, upon learning that the Swedes from the Karolinska Institute were doing the same study, the Harvard group suggested that they team up. That Swedish group had recently found evidence of neuroinflammatory proteins in the spinal fluid of people with fibromyalgia. That 2017 study found increased levels of a substance called fractalkine which may play a key role in microglia activation, increased pain sensitivity and allodynia.

    The Study

    Brain Behav Immun. 2018 Sep 14. Brain glial activation in fibromyalgia – A multi-site positron emission tomography investigation. Albrecht DS, Forsberg A, Sandström A, Bergan C, Kadetoff D, Protsenko E, Lampa J, Lee YC, Höglund CO, Catana C, Cervenka S, Akeju O, Lekander M, Cohen G, Halldin C, Taylor N, Kim M, Hooker JM, Edwards RR, Napadow V, Kosek E, Loggia ML.

    You might not be able to find a better group to assess the neuroinflammation in FM than the Loggia group. Marco Loggia, the senior author of the study, runs the Loggia Pain Neuroimaging Lab at Harvard. He’s a younger researcher – he got his PhD in 2008 – who is interested in subjects such as pain and fibromyalgia that many of his predecessors probably would have disdained.”
    Find the entire article and links on ProHealth, a website dedicated to posting the latest research. Cort Johnson is the author.

    I’m so sick of it’s all in your head BS. I was diagnosed in 1994 and have tried everything. I have had the itch for about 14 years. I never realize how bad it was until I started on gabapentin. It was a relief for many years and still helps but now I do get it mostly more mildly all the time including right now. I have had about 5 whiplashes. I find myself stopped at wrecks on the freeway and the next guy doesn’t stop(first in 1968). Or I’m sitting at a signal sighing relief when the car behind me comes to a stop. Then blam a drunk at 8am hits her pushing us both through the intersection. Or a nice Sunday drive on a country road. A good ole boy chasing his friend that just passed me clips me running me off the road and flipping me as he continues down the road. Then last Xmas, my own fault, I’m on a ladder pulling a big decorations box out of the garage attic when I fall backwards on cement banging my head on the metal door. I believe these are the reasons for my fibro and not some figment of a twisted mind. Maybe here doesn’t sound like it but I meditate, do yoga, some aerobics and walk my dogs daily on the beach where I live in Mexico. I HAVE TRIED EVERYTHING DON’T TELL ME IT IS PSYCHOLOGICAL!

  349. Barbara Keddy Post author

    Aw. my dear Kitty: I am not suggesting for a moment that we are all suffering from ‘twisted minds’. In fact if you ascribe to the idea of a Highly Sensitive Person and agree with Elaine Aron that we are like canaries in a coal mine and that our sensitivities are a gift rather than a liability you will understand why I use this term. Aron does not connect this to fibromyalgia but it fits very well in my theory (developed after speaking with hundreds of fibro sufferers). But, I will always stand corrected.
    I agree completely that with central sensitization we have compromised our central nervous system to such an extent that we now have neuro-inflammation. The result of the many years of a hyper aroused central nervous system takes a toll for sure and eventually various pathologies result. It still seems to me that it is a chicken and egg issue.In short, I believe these changes in our bodies occur AFTER years of living with fibro as any research that is done is AFTER a diagnosis, when there have been so many long years leading up to that point that of course it has had an impact on our bodies/ brains.
    I too take Gabapentin although now with medical marijuana CBD, I need less and less and down to 200 mgs at night, none during the day. The weight gain was extraordinary.You are certainly doing your central nervous system a great favour with the wonderful lifestyle you have of walks, exercise, meditation and yoga. Working on being calm, avoiding stress and anxiety is difficult in these chaotic times. You are certainly doing all the good things to quiet your central nervous system! Good for you, dear woman. I wish you well.

  350. Jennefer J. Burk

    I have found relief from the nightly itching on the soles of my feet. I rub them with Vicks vapo-rub before I go to bed and it relieves it enough that I can fall asleep.

  351. kitty

    I have used gabapentin for years. Now it seems to be working less, duh tolerance. I’m just wondering if others have come to this place? Are there any new medications that people are using. Thanks.

  352. Hank Barnes

    I posted back in 2018 about some of the things my wife has tried in dealing with this miserable itch. About a week ago she had another super severe episode which was as bad as it has ever been and brought her to tears (again). I decided to go looking for this forum again to see if anyone had posted anything interesting lately that might be of use. I had a difficult time finding it at first (couldn’t find my old link to it for one thing) but I did run across another website that I found very interesting and you might too. It is a long thread of different people suffering from deep unreachable itch in their bodies (feet primarily). Not sure if anyone there mentioned fibro in relation to it but many of the posts have some very interesting ideas on how to deal with it that I have never heard before (and a lot that I have of course). One of the things a few people seemed to feel worked for them ws pressure on the place where the itch was. Usually for a minute or two. I tried this on my wife’s feet and it worked, but we only have tried it once so far. There are other interesting ideas as well. Here is the link if anyone would like to check it out:

    Best of luck!

  353. Barbara Keddy Post author

    Hello again: I appreciate the link. This itching is so awful. The Central Nervous System is malfunctioning when there is a lot of change, like the season, quarantine and all the stress we are undergoing right now. My itching is also intolerable right now and my feet especially. I have been rubbing marijuana cream and that seems to curb it but for other places especially the nose I can’t seem to get it under control. I have not been active on this site for many months but I plan on reactivating it in the next couple of days. Stay tuned!

  354. Hank Barnes

    I come here periodically to see if anything is happening here (new posts). For anyone who is still paying attention to it still, they might like to know about a new discussion started over on mayo clinic connect website, referring to it as neuropathic itch. I can’t distinguish between itch as to whether it originates with fibromyalgia or neuropathy but they do seem related. Anyway, fyi, here is the link to the other discussion:

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