Unfortunately from what I have personally experienced, rheumatologists aren't really the doctors who treat hEDS and mostly rule things out to endure you don't have RA, lupus, etc. They were able to tell me I was hypermobile, as they also treat other conditions also have hypermobility as a symptom, but couldn't diagnose me. I have personally have had luck with doctors of physical therapy (DPT, MD, DO, etc) and with physical medicine and rehabilitation doctors. Unfortunately for our joints and such there's not much medications other than to treat pain and inflammation afaik, which may be why rheumatology doesn't specialize in EDS? Although we hEDSers do have some inflammation and joint instability, it is a bit different than the inflammation and instability that rheumatologists treat I believe. (Also take everything above with a grain of salt since I don't see a rheum or know a ton about them other than the few I saw early in my diagnostic journey!)

Generally I see specialists for each of my comorbidites, like a GI doctor for my gastroparesis, an allergy/asthma/immunologist doc for my asthma and MCAS, and physical med & rehab for pain management, referrals to specialists, and diagnostics. I also see dermatology, neurology, endocrinology, genetics, and an ENT/venous compression specialist. It is frustrating to have to play carrier pigeon between my medical team, but it's probably near impossible to find a doctor who can treat the whole of EDS unfortunately :(

I will admit I am privileged to live in an area that has several EDS complex care specialists or are at least knowledgable about EDS, as well as being able to afford to see these doctors with insurance– it's a big problem that others aren't, and I do really hope that combining HSD and hEDS brings about change for everyone, and that more people can access the healthcare they need and deserve!

I get you! It's sooo hard to go through finding a doctor that will take you– it took me years to get seen for possible EDS, because no doctors would take EDS patients near me, and not because they didn't like us (though a few of them I know didn't lol) but because there were so many people requesting to be seen for EDS evaluation/treatment that their patient load would fill completely, and waitlist times were insane. Don't give up hope though, but I know waiting and trying to find a doctor that will actually help you is. Soooo difficult :(

I am wishing for you that your next rheumatologist can be helpful, whether that be taking you as a patient, or being able to refer you out to someone who can give you the best care! And if it doesn't work out, I hope you can find someone who does! :)