Frustrated with EDS Diagnosis Process

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.

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.

Dm me hun!