I have the same. You are the first that has described my pain to a tee. I have had 2 diagnosis from 3 Drs. The neurologists both said Personage Turner Syndrome. The Dr. That did the medical imaging said it was NOT PTS it is mono Neuritis multiplex. I'm working with my health authority to get a copy of the letter from the Dr. Who did the actual testing. I've been suffering with the pain for a year. I've been suffering from the effects of the only meds that slightly help. I have a messed spine that I take opioids for and they do not touch the pain in my hands. I have already been in touch with Dying with Dignity however at this time you have to be dying for them to help. They are trying to get things changed so that people who are suffering with no chance of getting better can also get end of life care. I hope that you are able to get the help you need. I have so many pre existing conditions I'm going to see an internist so they can figure out why all these things. I've dropped from 162 to 93 lbs in 2 years and they can't figure out why except it's very hard to even swallow when your in this much pain. Medical system in Canada may be free but you get what you pay for. So sorry for your pain.