The Itching
This is all massively relevant to me, so I hope my detailed story will shed some light; there is definitely a subset of posters on this thread who have the same phenomenon as me, although the majority may or may not be describing something different. I often call my own illness "The Itching", wondering whether Stephen King would be interested in a real horror story...
Relevant history: I date my onset to a year during which I began to experience night sweats; these weren't a response to being too hot, and were quite unusual episodes of waking up drenched in sweat despite having been rather cold, if anything, all night. Happened sporadically, quite a few times. The even more memorable incident - and even more significant - was when I stayed at a friend's house and experienced a phenomenon that people describe as "like insects crawling around under my skin" - that's the only way to describe it, and it's an unmistakeable experience: when I first read that described a few weeks ago I knew I was reading about this aspect of my condition for the first time...
So what did I read about the 'crawling-insects' phenomenon? Surprise surprise - it's another psychosomatic disorder - ie. something else that loads of people claim is happening to them which can't be tested for and therefore must be all in their imagination. Funnily enough, all these people report the same experiences of itching and a sensation like insects crawling under their skin, and we tend to have CFS symptomology as well. So this 'imaginary' condition at least has a consistent pattern...
My own 'itching' is 'impossible', apparently, because I don't get a rash. Long, long ago, I naively believed that this real but impossible phenomenon would one day spark the curiousity of some consultant or researcher or other - after all, if something impossible is happening, there's clearly new knowledge to be had. But that was back in the days when I believed them when they told me I was the only person in the world with this symptomology and the whole things was unheard of - before I discovered there are tens or hundreds of thousands of us and before it even occurred to me that they would all find it much easier to conclude that if it was impossible, it was a case for the psychologists...those guys seem to be able to explain just about anything...
15 years, and yes I've been through every anti-allergy and anti-dust-mite product known to man, and as my symptoms wax and wane, 'the itching' is never more than a day away. If I so much as sit on a chair in a public place, or try to put my head on a pillow (haven't slept on one for over 3 years now), it starts as a tickle, develops as a series of tickly itches randomly around my body, and grows within less than an hour to a series of sharp stabbing pains like needles being jabbed into me. After a day or two without relief from something that provokes the itching (almost all new clothing and bedding provokes it, for example), I have settled into a state where I can no longer feel the itching directly most of the time - now I feel what others have described on this thread; a sort of fuzzy odd sensation, a kind of mixture of extreme sensitivity and benumbedness; I become incredibly tired and my skin seems to be permanently tingling all over; I get burning pains wherever my clothes touch my skin, and the sensation no longer feels like 'itching' as such; now I just have something more like the basic, classic CFS symptoms.
It took me perhaps 10 years of experimentation, supplements, trying everything under the sun before I could even get to the stage of identifying when I was in contact with something that made me itch. Until then, I was permanently exposed, and permanently symptomatic, and I couldn't perceive the subtle effects basically because I was never free of it. But now that I am, through extreme avoidance measures it seems I can keep the beginnings of decline at bay.
I don't know what relation my condition has to that of others, but from other posts on this thread it's clear there are others here who have this same itching phenomenon.
It might not be CFS/ME, but it has at least one thing in common with it - it's "medically impossible" and dismissed as psychosomatic, and there ends the story. CBT is, of course, always available...
I haven't got very far, over the years, with finding any accounts at all of this phenomena that I experience, so I'm excited that there are some others with the same on this board. I don't know whether those who describe it as 'neurological' symptoms are talking about the same thing, it seems really hard to be sure whether this is the same thing or not because all we have is our words describing the experience, and we describe things in different ways according to our own mental model of how we understand what we're feeling.
In my case, it's clearly related to multiple allergy-like sensitivities to foods and environmental toxins, particularly mold, but also any dust can provoke it. These sensitivities are all of a type that shows up under 'alternative' testing but not under NHS testing (ie not 'true' allergies).
One thing I came across that really intrigued me is the bizarre and controversial condition of "Morgellon's Disease". As far as I can tell, this seems to be CFS with the 'crawling-insect' itching (the best description of my own 'itching' symptoms I've read), plus one other totally bizarre phenomenon: 'fibres' emerging from the skin!
Based on my early experiences, where my first sensitivities and strongest sensitivities were to washing powders, particularly to biological washing powders, and based on the confirmation that the bedding where I experienced the 'crawling insects under the skin' was washed in biological powders, I suspect there's a connection with biological washing powders. I've read a theory that these enzymes have the biological capability to carry pathogens right to the heart of the immune system where they normally couldn't reach. And if there really is a phenomenon going on where people have mysterious fibres emerging from their skin, enzymes designed to distinguish between the fibres of clothing and the biological dirt on them would seem like they might have the relevant properties to explain it all...
One final thought. I often wonder whether I'm actually lucky to have this 'itching'. I can now directly sense when I'm exposed to anything that sets me off this way, although if I were permanently exposed for as long as a week I would lose that perception. If I remained exposed for a matter of weeks or months, I would be back to where I was for several years, 5-10 years ago - bedridden 12-14 hours a day and barely able to move from my unrefreshing bed, yet unable to discern that it was a reaction to something - still unknown - in and on my bed and clothes that was maintaining my condition. If I could not directly perceive the environmental provocations, I would have absolutely no hope of managing my condition; I would definitely have pretty severe CFS.
I'm very wary of generalising my own experience to that of others because it's so likely we have several subset conditions under the CFS/ME umbrella. My condition might easily have little or nothing to do with ME. But I do often wonder about the people who are bedridden and deteriorating, because I think back to the years I spent not realising that my bed and clothing themselves were making me worse in an unimaginably subtle way. On the downward trajectory I was deteriorating along during that time, I can easily see myself then as heading towards the more severe end of CFS/ME symptoms.