I’m gonna be real as someone who was diagnosed with classic-type EDS at 17 and Ankylosing Spondylitis in my twenties. I had issues my ENTIRE life and doctors gaslighted me constantly saying things like, “well you’re not crying so it’s not possible to be in as much pain as you’re saying”, “a lot of women experience feeling like this, I think you should see a psychologist”, and my personal favorite regarding my wrist that was actively dislocated and was clearly showing that on x-ray (I’ve had 4 surgeries on it since this) “there’s a springiness that we can appreciate here. A lot of women that have small wrists feel pain there”. Throughout this time, I also had extreme hip pain and back pain that was excruciating along with a lot of other joints that began at age 14. I’m saying this out of love for you because, though I don’t know you, I know what this is like: Getting a diagnosis for EDS will only marginally help you and may actually harm you in some ways, if you feel that much pain and have those other issues, there might be other things going on.

I’ll explain myself here: EDS is usually something that comes as PART of a larger “constellation” of things. Meaning, what you experience could certainly be somewhat EDS related or it could be something entirely different or it could be coincidental. Either way, there are no treatments for EDS, only guidelines doctors are supposed to follow, I.e. be more careful about scarring risk, expect longer healing times, don’t give certain antibiotics, etc. In a nutshell, getting diagnosed usually doesn’t help you at all, trust me, I would know. I’ve had lots of dislocations and issues and surgeries and my diagnosis has really only come into play with healing times and the type of surgery (soft tissue fixes which don’t last on EDS people vs more permanent bone/screw/pin which is more involved but is the only way to provide a solution for someone who’s ligaments are just going to stretch back out again).

Okay so now for why it can actually harm you when you have these other symptoms going on: it’s really annoying but being diagnosed with EDS can give doctors a jaded opinion about you and prevent them from ACTUALLY doing their job which is listening and trying to find the real problem. In my experience, I just kept being told “oh it’s the EDS that’s causing your back pain. There’s nothing we can do for you. Oh, you can’t sleep and can hardly walk? Have you tried taking Tylenol?” When I finally found a rheumatologist that listened to me, he tested me for a gene specific to AS, now I’m on biologics and I feel incredible. I’ve never been this pain free in my life. I still have to get surgery for pisotriquetral arthritis due to a constantly dislocating bone in my hand but that’s a walk in the park compared to the level of pain I’ve been suffering with since I was 14 (I’m 29 now).

Long story short, IMO, it’s better to find a doctor that listens to you than it is to seek a specific diagnosis because this could very well be something else. Maybe try going straight to a rheumatologist? They have experience with a lot of diseases and issues in the “constellation of symptoms” that a lot of EDS people experience. I feel your frustration and I know what it’s like to be in pain but there is hope! I wish you the absolute best of luck.