Originally Posted by DavidHC

I hear you. I've had this for a few years now and all I can say is that it can get easier to deal with, when you realize that even if it gets worse, it's not necessarily a death sentence. From the sounds of it, you have a relatively mild form. It may get worse, but there are some for whom it is so severe that they cannot live even semi-normal lives. Now, I don't know the cause of your illness, so perhaps it's worth pursuing it, especially if you're worried about it getting worse. In some cases it does, in others it improves, and finally in some it simply stays the same. Over time, it can get easier to deal with, and the anxiety tends to dissipate somewhat. That's not to say things ever go back to normal, whatever that is.

Given your description, it doesn't seem like all your symptoms are consistent with only BFS, and that some of them are consistent with neuropathy. What you would need and should pursue, if at all possible, is a skin punch biopsy. I live in Canada and so it wasn't easy for me to pursue it, but I saw three neurologist until one realized what was needed and sent off a sample to the States. So all I can say is that don't give up, since you're your own best advocate.