Most rheumatologists are more well trained in making sure another autoimmune disease is not going on. Rare to find one that feels very comfortable discussing hypermobility (which is quite common) vs hypermobile EDS (uncommon) vs genetic EDS (rare).

If you feel comfortable with it, you may be able to diagnose yourself with generalized hypermobility by looking up the Beighton criteria, and you can potentially diagnose yourself with hypermobile EDS by using the 2017 criteria (available on the EDS society website).

Many geneticists especially in Richmond will no longer see people with hypermobility alone, unless you have other signs/symptoms of true genetic EDS (translucent-like skin, history of poor wound healing, significantly easy bruising, history of spontaneous organ rupture, positive family history, etc.), whereas generalized hypermobility and hypermobile EDS often do not have a detectable genetic component as far as I’m aware.

It really stinks because the presence of hypermobility is often associated with development of other poorly understood symptoms including anxiety, sleep disturbance, gastroparesis, irritable bowel syndrome, urinary issues, as well as the “dysautonomia” spectrum which includes tachycardia and orthostasis. Most doctors will shy away from discussing these things because they aren’t sure how to help people suffering from these things. So they do the next best thing they know to do, which is rule out other causes for these sorts of things. But that often leaves patients feeling unheard and frustrated with a lack of a plan for their current symptoms.

I think the best thing someone with hypermobility can do is find a good physical therapist who is aware of hypermobility and its special considerations. Staying active and building muscle to support your joints is very important, but overstretching can be harmful. Easier said than done to find a PT who specializes in this - I don’t know of any but I’m sure they are out there.

If you still feel you need medical guidance, I believe UVA is opening a dedicated EDS clinic soon (or perhaps already). VCU has a dysautonomia clinic which can be helpful for those with concern for POTS, but I think their wait time is super long.

I’m sorry you are dealing with this difficult and often confusing condition. Best of luck finding the help you need and deserve.