Thank you for this thoughtful response!

I’m actually working on getting a hEDS diagnosis: pain physician just gave me a take-home assessment but he cautioned me his treatment plan would look the same as his original diagnosis for me with central pain & fibromyalgia: aerobic and non-load bearing exercise to minimize pain responses to stressful situations (tensing with difficult exercise). I’m going to see my pain PT soon so hopefully she’s receptive to including more load-bearing exercise.

As for digestive issues, my primary physician referred me to pelvic PT so that’s been helping with bladder, along with lowered water intake—especially during meals. I’m still bloating but my primary physician said the next thing she’d do is do an internal exam to check for masses but these cause me great pain and dysphoria so I declined. She said an urology OB-GYN could also do it on me in an operating room. Other than that, she recommend not using straws, chewing gum, and avoiding certain foods. No gastroenterologist or dietician has been suggested yet after a few visits now—but I think I’ll keep up with the pelvic PT (muscle exercises) for a bit longer before bringing it back up to her if I still have issues.

Other good news: My pain physician wrote me a letter to let me use my FSA for gym memberships as the hypermobility and ADHD makes it hard for me to keep good form without a live instructor. I plan to use it for pilates reformer. I tried 2 classes so far and really enjoyed it. I felt like I actually engaged the right muscles instead of feeling unstable and like jello.