My Sleep and Studies
It's reflexive to see the poll results and insist sleep problems are near-universal with CFS/ME and FM. I think they are; anecdotally, it's rare to find a patient without any. I also think what Cort especially is saying is certainly valid, that some obstructive apnea folks are in the mix. (A Toronto doctor showed a couple of decades ago that sustained sleep deprivation for a few days could bring on pain and FM-like symptoms. Then again, some folks live on 5 hours per night, including Eisenhower while planning D-Day for two years - talk about being under stress.)
I suspect, though, that for the majority of us sleep is impaired more from within the brain, in part because of HPA-axis malfunctioning, pituitary or pineal issues; and possibly from without via viral/cytoking factors. Like Dr. Peterson said in Sweden, our brain sleep mechanism just doesn't work right, and this really no-**** has to become better understood. I may be partial because it was months of decreasing sleep quality that preceded my anxiety attacks and rapid fall into illness.
Initially I had more trouble waking refreshed than getting to sleep. On benzodiazapines and/or naturally, I developed both. Angel and I have much in common. For me, Klonopin is still a knock-out drug, but it used to quickly cause a pre-sleep "brain blink" (microsiezure?) that meant I'd be out soon, and the blink rarely happens now. I might try relax in bed, or get up and do something else for a while, but my first tactic is prayer in the sleep position, perhaps because of whatever neural centers it activates. Even that doesn't always work, but whether it does is irrelevant to reverence. (I've grown quite the opposite, 'headed to purgatory at least.) Before onset, prayer was done on the knees, and imagining sex helped put me to sleep; that only delays sleep now. The light from a computer screen does even worse, unless I'm up into the weeee hours - not healthy. It's interesting that Japanese studies mention computers, but frankly, they weren't an excitatory problem before the anxiety was, and I think some Japanese are also caught up in societal factors at this stage, especially since they're normally more regimented.
For me, Klonopin also seems to have a noticeable 9-hour clock from when sleep finally starts. If I'm going to be interrupted, it had better happen at about the 5-hour mark, when I can much more easily get up and do stuff, though I might feel sleepy later. If I let myself go back to sleep immediately, all alpha-hell breaks loose with nightmares. From that point 'til the ninth hour, it'll take something pretty urgent for me to get up. Anyone calling me can kiss off. (I used to unplug the phone too, but would too often forget to plug it back in!)
I believe my routine one-day sleep study was done incorrectly for me, and it wouldn't have helped my disability case; my SPECT did. The sleep docs were looking for apnea, poor oxygenation, etc. and found nothing, so they blamed Klonopin, though my sleep issues long predated the drugs. Of course, they allowed me first to take the drug, and second, to wake me up after five hours and kick me out of the hospital so they could go home. I'd asked if anyone could stick around to see happens when I tried to fall asleep again; 'wasn't gonna' happen. I understand sleep research for us is getting more comprehensive, like the bike exercise tests.
Lastly, I also feel a distinct difference between "brain-tired" or sleepy, and body "fatigue" - that energy-sucking feeling. Sometimes they occur together, and sometimes resting because of one brings on the other. I'll go into a dreamy or half-awake phase where the body seems too tired to do anything but breathe, almost like a living corpse; 2-3 hours later, I'm up and ready to go, to whatever extent. I think what's going on in us during these "drainings" is finally being studies too; if not, that's why centers like WPI can be an enormous help.