“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!
Dear Suzanne: I too enjoy massages immensely, even to the hyper-sensitive areas. I too am happy you have found this site. Best wishes, Barbara
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
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.
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
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?
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
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
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
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.
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
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
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
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
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
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 .
I am so sorry Doris…know that you are not alone. Do try meditation for a few minutes each day to calm your nervous system and good luck,
Barbara
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!
Thanks for your comments Tiffany! Your story is like so many of our own and we can all relate to your itching discomfort! Best wishes, Barbara
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.
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
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?
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
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.
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