Hi Glenntaj thank you very much for the welcome and the information, it was my neurologist that informed me this condition was very rare and that is why there has not been much research done. I am glad I have found this site there seems to a lot of very helpful people on here and a lot of useful information. My condition affects my hands ,feet ,face bowel and bladder, I have been tried on every medication there is but some had no effect and the rest I had very bad side effects, six months ago they decided to try me on Ivig(I get every three weeks) although not fantastic but helps keep the pain bearable, if anyone has the same symptoms as me please get in touch thanks again xx