I would do a lot of research on eds (criteria, symptoms, comorbidities, etc) and come into your next rheum appointment ready with what you've found, how it lines up with you, and what you want to do about it. I understand being stuck in that cycle; I've been there. But it's best to be assertive and upfront with your doctor. And if you feel like they aren't really listening to you, then you can always go to someone else. If you are worried about approaching them in person/just need to see someone else like a geneticist, I would try to contact your doctor online through your chart if you can.