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!

238 Responses to “Fibromyalgia: Suffering With The Itch You Can’t Scratch”

  1. 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.

  2. Tena: I hope that the many comments you are reading on this blog will help you. Please keep in touch and best wishes,

  3. 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!

  4. There is no blood test for FM but you may want to have tests to rule out anything more serious. See your doctor!
    Take care!

  5. Wendy says:

    We have many people on our fb page that have severe itching, myself included. If you want to put this question on our page u may get more help xx

  6. 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.

  7. 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!

  8. Meryl says:

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

  9. Nope…not crazy, just frustrated like many of us!

  10. 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.

  11. Thanks for the info Liz! The OTC concoction sounds promising!

  12. 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.

  13. Thanks Lori:
    Interesting information!

  14. 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.

  15. 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.

  16. 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.

  17. Great advice! Barbara

  18. Thanks Lori!

  19. I hope that the comments made by Lori will be helpful!
    Best wishes,

  20. 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.

  21. 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 :-(

  22. 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?

  23. 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!

  24. 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.

  25. 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

  26. 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!

  27. 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

  28. 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.

  29. 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!

  30. I too take Gabapentin but many who have taken it do not find relief. It is somewhat helpful for me.
    best wishes,

  31. You are certainly not alone , Okeh. This itching can be maddening!
    Best wishes,

  32. 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.

  33. No have not tried it. I live in Canada so again there are those differences from country to country!

  34. 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.

  35. 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,

  36. 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.

  37. 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!

  38. kitty says:

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

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