I’ve been told that I have EDS by two different doctors, but both have refused to officially diagnose me until I try very restrictive diets(I have eating disorder history, so that’s a big no for me). I don’t know if they genuinely think it will make my incurable condition go away, or if they want me to lose weight before they’ll actually believe me(I am classified as just barely obese). There are very few options for rheumatologists that deal with EDS around me. I’m just so frustrated and don’t know what to do anymore. Any advice?

Ehlers-Danlos Syndrome (EDS)

View all
  • Speedyk


    Dm me hun!

  • Tersiddan


    I am so sorry you are dealing with that! I am obese and female, which means a lot of my doctors have dismissed my concerns. I finally found a doctor to listen to me and she sent me to a geneticist. The geneticist is the one who finally diagnosed me (but didn’t do any genetic tests because he was super convinced it’s hypermobile type). I share your frustration though. I live in Hawaii and so far every rheumatologist I’ve been referred to has declined me as a patient. They either say they don’t take my insurance or, my personal favorite, “rheumatologists don’t treat hEDS.” So frustrating when ALL the advice is to see a rheumatologist. When I’m feeling frustrated it really helps me to talk to one of my supportive people (it usually ends up being my mom or my partner). They are encouraging me to try and get in to see someone who specializes in EDS. That’s going to mean flying somewhere though, so I’m starting to save up for that. You are welcome to DM me anytime.

  • collapsingdoll


    I have no idea what a restrictive diet would do to help a diagnosis of EDS. I got my diagnosis from a geneticist(who was supposed to be a neurologist but thats a story for another day). Once I got my diagnosis she released me with not much guidance on care. Most doctors I have seen dont seem to care about the official-ness of my diagnosis as long as they know generally what I have symptomatically to work with. I guess what I am saying is if you are having a hard time getting care because the diagnosis isn't "official" find a geneticist to diagnose you "officially" otherwise I would just explain to your current and future doctors that this is what is most likely going on so treat accordingly.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.