Struggling to Get Diagnosed with HEDS: Any Tips?

My rheumatologist diagnosed me. He was actually the one who, when I first saw him about arthritis, figured out that my Hypermobility was actually EDS.

I had to go to a geneticist to be diagnosed with hEDS, they have criteria and do some physical tests as well to see if you meet enough criteria to be diagnosed. i was told by my primary car physician about 4 years ago that i probably had it but she was unable to diagnose me with it.. and said there is no point in getting diagnosed becuase there’s “nothing you can do” BUT i have been diagnosed this past year and been wrongly treated for so many chronic illnesses because i did not have this diagnosis! EDS is the root of SO MANY other issues and does not just affect our joints! it affects everything from our eyes to our intestines and can cause chronic fatigue as well! i definitely recommend you see a geneticist or someone who can give you a formal diagnosis so that you are able to understand others conditions you may have, and so doctors can better understand how to treat you for them. i hope this helps! EDS is a horrible illness and it affects so much but we gotta stay strong and stick together!❤️

So my GP takes me seriously but doesn’t feel comfortable diagnosing me. Seen several old man rheumatologists that have been flippant with me and stated that “there’s nothing to do if you have HEDS” and then offer nothing in terms of testing etc. Im going to see an Othopedic doc hopefully soon and hope they can be more helpful

A geneticist was my best bet for getting diagnosed with EDS. Well first I needed a PCP that took me seriously and from that I was able to get a good geneticist. I’ve never had luck with rheumatologists. POTS can be diagnosed by PCP or (as in my case) cardiologist. Physical therapy can be a good treatment. Drinking plenty of fluids and compression can help both. I hope you find someone that listens to you!

What doctors have you seen? I went to the cleveland clinic to see a rheumatologist and the first appointment he checked my mobility. I don't have EDS however I had a hard time getting to a POTS diagnosis.