Hi, All... I haven't posted in a while but often read other's posts. In some strange way, I feel I have friends here even though no one knows who I am... but so sadly, many of you know how I feel. "My pain is almost too much to tolerate." I'm truly sorry, Liftyourhands. That's me too. The pain and buzzing, tingling started in my toes, then my feet and lower legs... then the burning too, eventually becoming body wide within three months or so. And stunningly, Healthgirl, you describe EXACTLY the experience I feel EVERY TIME I try to go to sleep. Without medication, I would never fall asleep. I have used the word "surge" from day one with my doctor to try to describe the feeling. I felt like I was having a stroke. In the very beginning, it felt like a freight train running through me but now is this surge... like yours, at the very moment of sleep. Between the ever present burning, tingling, etc., sleeping is really difficult, and then, sadly, at the moment of waking the reality of a life changed forever begins again. Reading this is why forums like this are so very important because it's such an isolating, almost horrific experience that absolutely no one else can fathom.
I know I have had autonomic issues right from the beginning, in the form of the sleeping issues, light-headedness, terrible gastrointestinal symptoms. I lost an enormous amount of weight very fast. I couldn't eat a thing for months with significant abdominal pain. Every test on earth, including a colonoscopy, endoscopy, gastric motility... all normal. But, I couldn't eat anything. Six months or so later, things improved but have never returned to normal and I continue to never really be hungry and have daily stomach pain, though I do eat. Never once has a doctor suggested an autonomic component, and that leaves me confused because it's increasingly clear to me -- a lay person -- that at some level that's part of what's plaguing me. Maybe, fortunately, it hasn't risen to the level of tangible testing, but I worry because, along with all the burning and pain in my mouth, tongue and throat, I am now having significant trouble chewing, swallowing and with articulating my words. My tongue doesn't seem to "cooperate" like it used to, and I have to really work at speaking clearly. I often think this can't get worse; and then it does.
I guess nothing I say really helps anyone except to let you know someone else shares your experiences, affirms you and offers compassion and encouragement through the common thing that brings us here.