Joanna I have almost the exact same overarching question as you do. Unlike you I can't tolerate Gaberpentin even at the lowest dose - nor Amitriptyline or Cymbalta so far - although I did manage Amitriptyline for over 3 years before the heart palpitations got the better of me.

As I think we've discussed I'm having my skin biopsy done tomorrow by my GP - two punches on each leg. I've had a lumbar puncture, nerve conduction tests (no heat one as the neurophysio said that this isn't done in our hospital as it the equipment was too expensive), serum blood tests to see if this is immune mediated neuropathy and MRI of brain and neck. Nothing has come up so far. The only thing I always have is a high to elevated ESR/ Sed rate - which they say does relate to my autoimmunity but isn't specific enough to help establish more than this.

I understand how sad all this is making you. I'm in an abject state of terror just now about my life and where it's all going - but just now the nerve pain in legs and arms is the least of the terror I think as things have mostly gone numb. I see my rheumatologist on Thursday but he is a fence sitter and defers to others including the neurologist. All I can say is that any result that shows up something has to be progress for either of us and I think we both have to keep pushing hard for them to get beyond the term idiopathic and start looking for proper solutions which might set our defective immune systems back on the right track. That's where I'm pinning my hope anyway. Mat x