Soxfan - Yes I have a hard time to describe it. I tend to describe it to people as an 'agitation', though really the word isn't strong enough. 'Torment' is a better word for it, but I fear if I say that people will think I'm exaggerating. I'm not. When this symptom was at it's worse a few years back, I spent my whole life alternating between compulsively exercising, as I couldn't stay still never mind lie down and rest, to completely collapsing and being unable to move and in huge amounts of pain/discomfort. And I'd hardly sleep at all. I can't begin to describe what hell it was.
I think the fact that nobody understood made the problem worse. It wasn't until I finally went to my acupuncturist that I felt like someone in the world could see what I was going through. In fact, he was so alarmed by what he felt when he took my pulse that he ordered me to hospital as, as he later revealed, he thought I may have a fatal heart condition. As it turned out, from the hospital's point of view there was nothing wrong with me, apart from having a fast heart rate. And they just said that was just due to anxiety.
As I say, it did get gradually better with acupuncture, and after quite a while, I started to become well enough to come on ME forums. And have been so releaved to discover I'm not the only one that gets this! There really as others. I suspect that it is a certain 'subtype' of ME patients that get this problem. But I'm sure you'll notice if you read this thread and a few others on here, Soxfan, that there are others. You are most definately not alone.
If ever you want to talk about this problem to someone who understands, feel free to PM me. And same goes for anyone else. I wish I'd have had someone to talk to years ago about this problem.
SickofSickness - yes it def distrupts my sleep and concentration too. In fact, the only reason I can think clearly and post on here at the moment is because I saw my acupuncturist yday. I was going to stop seeing him whilst I tried Perrin, but this problem got so bad I couldn't cope and needed acupuncture. Thanks to the acupuncture I am now getting a much needed break from the symptom, so have took advantage of the opportunity and come on here. And yes I've ended up with pretty much no social life. Being with people makes this problem worse. As a result, I probably have a friend round to my house for about an hour or so about once a month. I can't do much more than that. So frustrating - I had a decent social life before all this started!