Abby, I feel so sorry for you, and I hope you have a chance to see doctors who can help you. I am almost 80 years old, and have a very complicated health condition, in fact so complicated that my data was submitted to the Rare and Undiagnosed Disease Research Biorepository.
I live in south west Florida, but once a year I travel for a couple of weeks north to Minnesota to see my medical providers at the May Clinic in Rochester, MN. I would not be among the living anymore, if the docs of the Mayo would not take care of me. The rest of the time they meet with me in online sessions.
I can only recommend that you seek help a the Mayo. I am sure they can help you to live a mostly painfree life again.

Linde