Thank you for sharing your new diagnosis, and I wish you all the best with the surgery. You are so lucky to have access to all those specialists — I’ve had ME for over 40 years but have never seen an ME specialist. There’s no treatment other than pain relief, and no tests for specific, potentially treatable strands of the illness.
Most members of one side of my family has very obvious H-EDS, yet none of us have been diagnosed (“there’s no treatment, so it’s not worth a referral”), let alone offered any support. I was left to deal with daily subluxations until I was old enough that they stopped, due to natural joint stiffening.
I have mild arthritis, which causes far fewer problems than the ME or the H-EDS. I get to see a senior clinician every few weeks, have regular scans, see an occupational therapist, and have been offered several treatment options. Go figure…!
I hope your recovery from the surgery is uncomplicated, and that it’s successful in giving you a better quality of life. I often think about you, even though we’ve never met.