I know that unrefreshing sleep is a symptom of cfs and it is one that I have often.
I just wanted to ask does anyone ever wake up with unfulfilling breaths, I often find that when I wake up on a bad day I seem to take a deep breath in and my body doesn't seem to really get much out of it and then after I am awake it takes several hours for me to get passed that feeling.
First to echo what Athene has said: very high quality advice as usual, and as always, worth paying close attention to..
Unrefreshing sleep is absolutely central in my experience. Solving the sleep problem puts so much else into place. If we don't get into deep sleep, the body can't do loads of crucial things it needs to do, and many of the other symptoms follow logically from that. In my case, it turned out to be the root cause of my chronic neck and back pain: my muscles just never got chance to rest during the night. The phrase "running a marathon in your sleep" has been mentioned before here.
But cracking the sleep problem is really, really hard. In my case, the only place I can now sleep is on a (very expensive) leather sofa. I can't handle beds or bedding. I could write a whole thread about sleep, but I don't have time so for now I'll just mention: hot baths last thing before bed, then cool down a bit as you go to sleep; getting the right routine and sleeping when it's dark; earplus if you can't get a quiet environment; very important to get a completely dark bedroom; and meditation, meditation, meditation.
All this is fairly obvious and well known of course, and it only goes so far because there are still mysterious physical reasons blocking our deep sleep.
There has been interesting discussion on this forum about XMRV and how that could be causing the sleep cycle problems, but it was a while ago, could be tough to find those discussions. I think the idea was that the body is working all night to try to clear the XMRV that has been replicating during the day, which means the immune system is active all night and we never get chance to go into deep sleep.
Onto the specific symptom of not feeling you can get enough oxygen. This was one of my very first symptoms, I had trouble with this on and off for a year or so, intensely so at the time when I really got sick and lots of things started going wrong. I tried sticking my head out the window but it never seemed to help. I'd breath and there just never seemed to be enough oxygen, just as several people have described.
I went to my GP with it and he explained the cycle of hyperventilation (?hypoventilation? think there may be a few versions). He said it was
basically anxiety-related, that the more it happens, the more anxious you get, which makes it worse. He suggested trying the thing with breathing into a paper bag, but his main advice was to reassure me that it wasn't serious and to strongly advise that when it happened I should
try to relax, meditate, and try meditational breathing exercises.
I have to say, that particular advice cured the symptom pretty much immediately, and by concentrating on relaxing and meditating, I could resolve the problem every time - and I still can, many years later, when it occurs. I think it was related to everything else going on, with an infectious cause probably triggering the initial anxiety symptoms (anxiety is common in all these ideopathic conditions and I used to have it really bad). But the good news is that
in my experience at least, there's a lot you can do to manage it through meditation. Fortunately I'd done lots of meditation before, so I knew loads of breathing exercises to try. If you don't know circular breathing, and other meditational breathing exercises, there are lots of people here who will have loads of advice on that - check the Buddhism threads and you'll find loads of experts.
