About 25% of small fiber neuropathy is deemed 'idiopathic'. The key is finding a doc who is willing to go to the end of the internet with you, and you still may end up with a diagnosis of idiopathic. I think you have tried a lot of the new drugs out there, but maybe some combination out there will give you relief.

I exhausted all possibilities, and we are looking at 'known' hereditary causes, which, do not fall into current neuropathies, but rather, myopathies and related syndromes. I am not exactly sure this will yield anything, but my doc did understand that I had to go there. I have some alarm bells sounding in the family history, not neuro ones, but other ones. A cardiac death, for example may be related to a neuro condition that was never diagnosed. I say 'known' because new ones are discovered all the time. It is a field in flux right now and genome research has blown things apart in terms of what is a myopathy, endocrinopathy or neuropathy.

I agree you need pain relief....however, some drugs are contraindicated in some conditions. You have seen 11 or 12 neuros so I suspect they have ruled out most of these conditions. If you are idiopathic, you have to live with it until hopefully a reason is found, so yes, do take what relieves your pain if you can find something that works without causing havoc. Some folks with some conditions react to some drugs. You will know what you can and can not take.

Your screen name indicates something to do with horses....I suspect you ride a horse. You have spinal injuries, that may through some process contribute to PN...a lot of us, me included, have spinal conditions. I have RLS as well, but had that my whole life....even as a kid. I have had anesthesia awareness, paradoxical reactions to many drugs, especially those that put most people to sleep for days. I am definitely wired differently, and I have to accept that.

I hope you can get to the bottom of it. The best neuro is the one who works with YOU.