So hard to know if the maddening creepies in my nerves are the same sensation you're describing soulfeast! But sounds similarish...the best description I've come across was "like millions of tiny insects crawling around under your skin", but that was only around time of onset for me, and since then, it's more like random needle-like stabbing pains, or burning pains, or tingly itches, anywhere and everywhere. For me, over the years, I have discovered that the clothes and fabrics etc I'm in contact with are critical - even through layers of clothing, and the effect is non-local, ie. the 'itching' is all over my body and not particularly at the site of the contact provoking it. It took me 10 years and plenty of detox first, to get to the point of working out this pattern. It was incredibly subtle to detect, and impossible until I'd cleaned out a lot of other confounding factors first.
Cleaning mold out of my environment (air filter etc), detox, and radically replacing all clothing until I found some stuff I was less sensitive to, all helped me get to the point of being able to manage it. But for many years, it was so constant and so impossible to ever find relief from, that it was incredibly difficult to determine what the triggers were, and what was safe. Now, I can feel when it comes and goes, and manage it by avoiding things that set it off.
B12 plus loads of other supplements, over the course of a year, did seem to help break the back of it, but I still have to radically avoid all the triggers or it all comes back again.
This whole symptom pattern probably isn't ME, but it could be a large part of CFS, and I've met a few people on here with simlar experiences; personally I think mold/fungus is critically important to all this; I'm sure it is for me, and for some others, and I suspect it's significant for most of us but that's just my guess...and at the end of the day I'm still incredibly sensitive to these triggers, whatever they are, so there's still a permanent underlying immune vulnerability there.
Interested to hear from anyone who has the itching type symptoms I just described, together with mold/fungus sensitivity and "never catch colds" symptom pattern. Also keen to encourage everyone to explore and look for subgroups of people with very similar patterns to yourself - and to list/describe main symptoms (on our blogs, for example) in such a way that we can all seek out people most similar to ourselves...a kind of bottom-up cluster analysis, wouldn't that be cool?...
