I had pretty much the same exact problem a year or so ago. It was beyond terrifying!! None of my doctors could figure it out (didn't seem to be related to my meds, and all the tests we did were normal, except for very low levels of vit B12 and vit D, but even correcting those abnormalities did not help). The only way that I could describe it was that it felt like my body was shutting down, and there was nothing I could do about
it. It went WAY beyond fatigue. I had literally no quality of life. I had to sleep 20+ hrs a day, and the few hours that I was up, I was fighting as hard as I possibly could to stay awake (and that was while taking provigil and other stimulants). I could barely take care of myself, let alone lead any kind of productive life.
The only thing that finally helped me was when I started getting ketamine infusions and taking LDN for my CRPS. The pain improved significantly, but more remarkably, the fatigue issues almost completely resolved. We now think that it was all due to a build up of inflammatory mediators in my brain and central nervous system, related to the CRPS, that was literally becoming neurotoxic to my CNS. And ketamine and LDN, among other things, are both anti-inflammatory medications that work in the central nervous system. It is especially interesting, because one of the ways I know that the effects of my infusions are wearing off, is that my fatigue gets a lot worse again.
Whether what you have going on is something similar, or different, I don't know. But I can relate to how scary it is, and how powerless you feel. I hope you find some answers soon!
Skeye
Post Edited (skeye) : 6/1/2016 5:38:30 PM (GMT-6)