I have CFS and fibromyalgia. I've been diagnosed with fibro because I have the classic "tender points" but the pain is not a major issue for me, it 's the fatigue. I'm unable to work and unable to do much at all, even chores around the house, because I am always exhausted.
I've had this fatigue now for about 30 years. It started out gradually, imperceptibly, and got progressively worse over the years.
My question is about sleep, because I haven't seen it discussed that much and it's major issue for me. I think my inability to sleep might even be the whole explanation of my symptoms. It has always taken me several hours to fall asleep, ever since I was little. Right now I have no control over when I sleep, because I seem to lack the ability to fall asleep easily, or sometimes at all unless I've been awake for more than 20 or sometimes even 30 hours. Once I'm asleep I can usually sleep for a decent amount, it's the falling asleep that is so difficult. As a result, my sleep schedule is all over the place, and I have no control over it.
I don't nap, because that is impossible, since I can't fall asleep unless I've been awake for a long time. I have never fallen asleep inadvertently, like at a college library or a boring lecture, and I can't fall sleep on long bus or car rides.
I've been to see a couple of sleep specialists but they were no help at all, suggesting "sleep hygiene" measures that were just insulting. (That's like telling someone with anorexia that they should try to cook more-appetizing meals.)
Has anyone else found their insomnia to be a major component of their CFS and fibro?