Fibromyalgia: Suffering With The Itch You Can’t Scratch
“Once it is understood that sufferings cannot be compared, then it is possible to speak of different sufferings in the same story because there is no comparison”, Arthur W. Frank
Here it is… one awful day, living with the winds and rains of Hurricane Hanna and my brain tells my body something unusual is happening. The neurotransmitters are in overdrive. The itching has returned; it is everywhere on my body and nothing relieves it…not the Epsom Salts baths nor the Aveeno Anti-Itch lotion. I can’t get comfortable and my nerve endings are on fire. Only by constant massaging of my body parts do I get some degree of relief. When the hurricane passes us by I know the itching will subside until the next stressful event or a dramatic weather change.
What could possibly be happening to the person with fibromyalgia who cannot find relief from 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, a fungal infection of ringworm, or an autoimmune disorder of psoriasis, the itching of fibromyalgia does not seem to have a specific label that 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!
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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 that help to identify stimuli like pressure, heat, cold, and pain. When one of the sensory receptors is stimulated there is an electrical signal that is taken to a nerve cell that carries nerve impulses to the Central Nervous System (CNS). The CNS responds through the motor neurons ( a nerve cell that carries messages from the brain and spinal cord, to stimulate or contract muscles).
The muscles and glands interpret the messages and will either contract or withdraw or conversely, respond in another way. It seems likely that in fibromyalgia there is a disruption in the neurotransmitters and intense itching occurs, in particular when there are unusual events that the brain interprets as unfamiliar. Often, for me, it is when the weather changes, particularly on rainy, humid, or windy days. The itching is usually, but not exclusively, most severe in my hands and feet, although it can often feel like it is all over my body.
Writing about a new theory regarding brains and bodies, Atul Gawande (in the New Yorker Annals of Medicine, 8/27/2008) discusses the newer ideas regarding itching. In the article The Itch he points out how “we experience things that seem physically real but aren’t: sensations of itching that arise from nothing more than itchy thoughts; dreams that can seem indistinguishable from reality; phantom sensations that amputees have in their missing limbs”. (The itching we experience in fibromyalgia is ‘phantom itching’.) “The more we examine the actual nerve transmissions we receive from the world outside, the more inadequate they seem”.
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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 dermo neuromodulation 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 occurring in an 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 an acute attack is not very helpful, nor are many of us aware of 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 forestall 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!
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