Hello Judy, @jujubbb Welcome to Mayo Connect. We appreciate your post about this rare condition. I'm sure that you must feel some relief to at least have a label to put on this chronic pain condition, especially given the fact that it is so rare. While I don't know if any of our Mayo Connect Members have this specific condition, we have a lot of people who deal with chronic pain. I'm inviting @johnbishop, a volunteer mentor, who also deals with chronic pain.

Has your doctor offered you any other treatment plans other than meds? Is physical therapy an option for you? We look forward to getting to know you better.

Teresa