Hi all, I've just joined. Here's a long post about my journey so far, it helps me cope.

I'm in my late 20s now. I have had a history of weird and painful stuff with my body that was normalized or dismissed by my family (genetics, never heard of it /s). I've fought (and have been successful) in the past to be diagnosed with multiple conditions that are not well understood and dismissed by both the general public and by doctors. So I know what it's like to not be taken seriously when you're falling apart emotionally/physically in your teens/20s. I also know what it's like to be asked "Um why do you have so many issues? You're too young" by doctors and be constantly warned that I am bordering on hypochondria.

I have heard of EDS in the past, but I only ever saw people who were already using mobility devices in their teens, contortionists, and extreme skin extensibility in "side show" type publications. Apart from my body being normalized by everyone around me, no one ever tried to move my body/skin too far past the normal range of motion/extension. I'm also generally very risk-averse and easily embarrassed, so I hardly ever put myself in any situation that would have given others the opportunity to observe hypermobility, dislocations/subluxations, or anything extremely concerning about my body. So I just never considered EDS.

Then last week I saw a tiktok (yup) about the Beighton scale and realized that my joints do hyperextend. The algorithm kept showing me more tiktoks about EDS and all the co-occurring conditions and body quirks people have. Almost every time I saw a new one I'd gasp, until I finally started actually screaming NO WAY. No way, this weird unexplained/dismissed body quirk I have is a symptom?? No way, all of my medical conditions co-occur or are starting to be linked to EDS?? So I finally looked at the diagnostic criteria from the 2017 article.

It seems that I meet the criteria, but I'm not totally sure that I'm interpreting my experience correctly. I'm not asking for medical advice here, this is mostly a description of my current state of questioning. I'm not sure if the type of sensations I get are technically subluxations, because I didn't experience pain from them in the past! Here are two candidates from my experience. First, in the past few years I've started to have a weird sensation in my lower back/butt when I lay down on a bare floor. It feels like my vertebrae get pulled apart, or something is being pulled out of a socket, and there are popping sounds. If I don't brace my core muscles really tight before I move my legs, there will be a resounding popping sound, a sudden thwap sensation across my lower back/butt, and bad pain. A second candidate: if I let my arm hang off the side of the bed, it can sometimes feel like it slides out (of what, I don't know). I usually let it happen because it feels relaxing?? I've never tried to move from that position without first slowly re-engaging my arm muscles to "pull" it in because I'm afraid of hurting myself.

I wanted to say that I may not have a lot of the stereotypical skin/joint issues, but I realized no one had ever thought something was wrong enough to help me figure it out, or I thought it was normal. I've had achy fingers most days I wake up, and I struggle a lot to open bottles and jars, among other things. Internal issues have been way more apparent and have required medical intervention. I actually do not have a good guess regarding a specific subtype because I have a lot of specific symptoms that manifest in several subtypes.

So I had a doctor's appointment two days ago because I finally convinced myself that it's worth finding out why I still ache after my cat jumped off my chest and injured my back a few months ago. I took the opportunity to ask for a referral to get an EDS assessment. Thankfully this doctor was very nice and said EDS was outside of the scope of their practice, so they gave me a rheumatology referral and told me I may have a herniated disk. Then the fun started! /s Rheumatology outright declined to see me because they do not see patients with EDS or hypermobility. When I pressed about a possible herniated disk, they said they do not address that in their clinic. Fun fact, I have seen several people say they were seen by doctors in this department and diagnosed with EDS with the same referral I have! Rheumatology then told me to talk to a specific PT practice. That specific practice said "We need to ask our PTs if they are willing to see EDS/hypermobility patients." I thought I already knew how crappy the medical system is, but now I'm truly on the longest, most arduous quest of my life I guess.

Thankfully the first doctor is on my side, so I'm waiting on a genetics referral to go through to see the only geneticist in my area who works with EDS patients and diagnoses EDS. I'm also compiling a binder of diagnostic criteria, my medical paperwork that indicates I fit the criteria, research articles pointing out the correlation between EDS and my other medical issues, and photos of my hypermobility, skin hyperextensibility, and other visible signs. I'm also dealing with the emotional aspects of seeking diagnosis for an even more "rare" disease when people think I'm already over-exaggerating my current diagnoses or experience. I couldn't possibly have a "rare" "hard to diagnose" disease, I've already got several!! /s

I just think it would bring me so much peace to be able to explain the myriad issues I have with just one condition. And it would explain why several medical interventions haven't worked for me. If it turns out I don't have it I'm not sure how I'd react, I've been in so much distress my entire life. If y'all have any input on this emotional issue, I'd love to hear it!

Thanks for reading. This helps a lot, and I would really love to be able to connect with others who deal with the amount of medical gaslighting and invalidation I've experienced.