A doctor friend's sister-in-law suffers similar pain. My friend and I discussed her condition, and he told me in private "yeah, she's screwed". From what I recall of the conversation, doctors have just no idea what do to with a patient like this.

I'm not sure how to go about this but it feels like it should be possible for some price.

That, in a nutshell, is the reason we spend so much on healthcare for remarkably little effect.