Fibromyalgia: Suffering With The Itch You Can’t Scratch

147414671“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. And, 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!

269 comments

  1. Kimberly says:

    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 says:

    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!
    Barbara

  3. Katrice says:

    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 says:

    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!
    Regards,
    Barbara

  5. Yvonne Carpenter says:

    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 says:

    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 says:

    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 says:

    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 says:

    MY MOTHER ALSO HAS FM. SHE HAD VASCULAR SURGERY ON HER RIGHT LEG. THE ITCHING STARTED. WITHIN A SHORT PERIOD OF TIME HER LEFT LEG IS ITCHING IN THE SAME PLACE. MY THOUGHT IS THAT THE CNS IS LIKE THE STATE OF IDENTICAL TWINS. OFTEN FEELING THE SAME THING AT NEARLY OR THE SAME TIME. IT IS SUCH AN ODD DIS-EASE. I HAD HER APPLY HYDROCORTISONE 1 PERCENT, DO COOL COMPRESSES AND TAKE AN ANTIHISTAMINE LIKE CLARITIN. BENADRYL DID NOT HELP TOPICALLY OR ORALLY. IF WAS ABOUT 6 WEEKS AFTER THE SURGERY THAT THE ITCHING DISAPPEARED. GOOD LUCK, NECEY

  10. Barbara Keddy says:

    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 says:

    -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 says:

    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 says:

    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 says:

    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! :-)
    Barbara

  15. Jayne Hitlz says:

    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 says:

    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 says:

    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,
    Barbara

  18. Jayne Hitlz says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    Barbara,
    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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
    Cambridge,uk

  40. Barbara Keddy says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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?
    Thanks,
    Jan

  62. Barbara Keddy says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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.
    Anne

  83. Sharon says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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 says:

    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,
    Barbara

  105. Erin says:

    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 says:

    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 says:

    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. Tiffany says:

    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!

  109. Sallee Harrington says:

    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.

  110. Barbara Keddy says:

    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,
    Barbara

  111. Susan Carson says:

    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?

  112. Barbara Keddy says:

    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

  113. Jessica Alba-Vazquez says:

    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.

  114. Barbara Keddy says:

    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

  115. Karen Dewberry says:

    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?

  116. Barbara Keddy says:

    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

  117. April Rockwell says:

    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

  118. Barbara Keddy says:

    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,
    Barbara

  119. Pam Young says:

    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

  120. Barbara Keddy says:

    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

  121. charlyne martin says:

    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.

  122. Barbara Keddy says:

    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

  123. rosa says:

    :*( 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.

  124. Barbara Keddy says:

    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

  125. Corrina says:

    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!

  126. Barbara Keddy says:

    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,
    Barbara

  127. Julie Ellis says:

    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,

  128. Barbara Keddy says:

    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,
    Barbara

  129. Caraleisa says:

    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!

  130. Leslie Leavitt says:

    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.

  131. Barbara Keddy says:

    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,
    Barbara

  132. Bobbi says:

    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!
    Bobbi

  133. Barbara Keddy says:

    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!,
    Barbara

  134. marie says:

    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???

  135. Barbara Keddy says:

    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,
    Barbara

  136. DS says:

    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!!!

  137. Barbara Keddy says:

    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,
    Barbara

  138. DS says:

    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

  139. Barbara Keddy says:

    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!
    Barbara

  140. Gayle Flindall says:

    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!!!

  141. Bethany says:

    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.

  142. Barbara Keddy says:

    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

  143. Gayle Flindall says:

    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.

  144. Ellis Jimbo says:

    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.”

  145. holly arthrell says:

    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!

  146. sandra says:

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

  147. Barbara Keddy says:

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

  148. Deborahlynn forbes says:

    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

  149. Barbara Keddy says:

    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,
    Barbara

  150. Charlotte says:

    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.

  151. julie barnes says:

    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

  152. Barbara Keddy says:

    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.
    Regards,
    Barbara

  153. Barbara Keddy says:

    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

  154. Brenda says:

    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!

  155. joyce says:

    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.

  156. Deborahlynn forbes says:

    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

  157. Michele says:

    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.

  158. rollen says:

    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

  159. Wilma Rainwater says:

    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.

  160. Barbara Keddy says:

    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

  161. Barbara Keddy says:

    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

  162. Cheryl says:

    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.

  163. Wendy says:

    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 :-(

  164. Barbara Keddy says:

    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

  165. sharon ferrell says:

    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…..

  166. Barbara Keddy says:

    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

  167. Dania says:

    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.

  168. girl4242 says:

    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.

  169. Al Smith says:

    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.

  170. Barbara Keddy says:

    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!
    Barbara

  171. Dania says:

    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.

  172. Barbara Keddy says:

    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!

  173. Jane Asher says:

    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!

  174. Amy Whisenant says:

    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??

  175. Tena says:

    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 !

  176. Gail Lauricella says:

    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.

  177. kate says:

    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.

  178. Barbara Keddy says:

    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.
    Barbara

  179. Barbara Keddy says:

    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!
    Barbara

  180. Wilma Rainwater says:

    Jane,
    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.

  181. Barbara Keddy says:

    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!
    Barbara

  182. Meryl says:

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

  183. Liz says:

    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.

  184. Lori says:

    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.

  185. Momma J says:

    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.

  186. Lori says:

    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.

  187. Lori says:

    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.

  188. Suzanne Sichel says:

    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.

  189. Barbara Keddy says:

    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 :-(
    Barbara

  190. Lisa Murtagh says:

    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?

  191. Barbara Keddy says:

    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!
    Barbara

  192. kitty says:

    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.

  193. Barbara Keddy says:

    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

  194. Andrea says:

    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!

  195. Barbara Keddy says:

    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

  196. Okeh says:

    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.

  197. kitty says:

    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!

  198. kitty says:

    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.

  199. Jacquie Raffile says:

    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.

  200. Barbara Keddy says:

    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,
    Barbara

  201. kitty says:

    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.

  202. Barbara Keddy says:

    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!
    Barbara

  203. kitty says:

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

  204. Sherri says:

    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.

  205. Barbara Keddy says:

    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,
    Barbara

  206. kitty says:

    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.
    Kitty

  207. Dania says:

    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.

  208. Dania says:

    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.

  209. Dania says:

    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.

  210. kitty says:

    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.

  211. Barbara Keddy says:

    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.
    Barbara

  212. Sherri says:

    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.

  213. Jacquie Raffile says:

    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.

  214. Sherri says:

    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 :(

  215. Danita Redd says:

    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.

  216. Barbara Keddy says:

    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,
    Barbara

  217. Barbara Keddy says:

    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,
    Barbara

  218. kitty says:

    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.

  219. Jacquie Raffile says:

    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.

  220. Jacquie Raffile says:

    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.

  221. Jacquie Raffile says:

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

  222. Kay says:

    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.

  223. Kay says:

    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.

  224. Barbara Keddy says:

    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,
    Barbara

  225. Barbara Keddy says:

    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,
    Barbara

  226. Jacquie Raffile says:

    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.

  227. Jacquie Raffile says:

    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.

  228. Jacquie Raffile says:

    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.

  229. Ruby Harbaugh says:

    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

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