I totally agree with your thoughts about benzodiazepines, it seems that even when used sporadically, when you stop them they seem to intensify the symptoms 10 fold. I had a Dr get me to try Klonopin for a couple months and although it did help my body to settle down a bit, coming off of it takes about a month or so of hell with an increase in symptoms. It also made me really depressed. I tried Xanax for sleep for a while and although it knocks me out, I get to pay for it later.
Another crappy drug is Lunesta. I weened my way off of that and I think it has made a huge amount of difference in how I feel in the mornings and with my symptoms. Its interesting to know that after a couple months of hell with sleep and other stuff, that I can sleep with out it.
I was also one of those people who would wake up a ton of times a night and had no idea why. For me, it seemed to be something physical that causes it but seemed to settle down after 6 months to a year. I know sleep disturbance is not uncommon in a lot of ailments but it was way out of the norm when It happened to me. Most of the time I was thinking, "you got to be kidding me. How in the hell can my sleep be this messed up?" I still wake up for extend periods of time here and there, but so do a lot of people I know. My cure is a good book and no computer.
emmie - I get the numb arm thing also. I think it is positional but also I think there is now a predisposition to limbs going numb easier than before acquiring these symptoms. I will wake up sometimes and have to get out of bed to shake the two dead stumps that are my arms back into feeling. It hurts like a mother, but as you probably know comes and goes and after it wakes you up and you work it out for 5 - 10 mins it does go away. At least for me. It's strange that ever since all this happened for me about 3 years ago, my legs and other parts of my body will go numb easier when sitting or learning in certain positions. Guess that's just part of the crap.
It is great to hear someone getting 95% better. I am still suffering to the point of debilitation at times, mostly with fatigue and burning but still hold out hope

MD