Hello Jessica. I'm sorry you are in such pain and that I don't know much about your condition. I think you are having some kind of neuropathic pain? I recommend you check out this website for the Institute for Neuropathic Pain in the Netherlands.
http://www.neuropathie.nu/english-ar...d-website.html
They have been adding more and more articles in English. Perhaps you will find something about the type of pain you are having if it is neuropathic. What you describe sounds neuropathic to me, but I am not a medical person.
I, myself, use the PEAPure mentioned in the English articles section and have been helped by it. It has toned my pain down to more tolerable levels.
Best Wishes,
Ruth in Wisconsin
P.S. I don't come here often, so I may not see if you post further. So sorry.