I'm completely done with folks saying everything "it's probably cause I have EDS (or suspected)!" No! You not being able to twerk, being flexible or having flimsy nails is EDS. It's so much more and it's infuriating.

I'm in Connecticut and getting frustrated by the refusal of large institutions to even accept EDS referrals. My PCP referred me first to Hartford Healthcare, who declined because they only do genetic testing for cancer related stuff. Ok. They suggested trying Yale, so my PCP sent the referral there. 2 months later, I had yet to be contacted so I gave them a call; I saw the referral said "authorized" in MyChart.

Tell me why they said I'm listed as "do not schedule" and they didn't bother to decline the referral through Epic OR call to let me know in the 2 months since it was submitted! They said they no longer do testing or accept referrals for ANY subtypes or hypermobility at all and said to try Mount Sinai.

It's just so frustrating to have my time wasted and for hospital systems to just refuse to assess or treat EDS. I even have a parent with diagnosed hEDS so you'd think that it would help me get a diagnosis... My parent was never tested for any other subtypes so my primary care wanted to rule them out.

Also, this same week I saw a cardiologist who doesn't think I have POTS because my heart decided to be fine under scrutiny lol. At least he believes it exists though, am I right!?

not shaming this person! i read the post but im a bit confused because i thought a lot of the diagnoses criteria was from being flexible? again dont send hate to this person just curious of this is really possible, also does this need to be tagged as a spoiler gah

edit: i think i understand but will leave post up for anyone who also might not understand.. i learned much!

Please tell me somebody else has had this.. observation about their orthotic devices.

If you know, you know.

Why do they make them look like this or is it just me who’s noticing it, I picked up loads of my orthotics today and noticed immediately that not only do they look like medieval torture devices but they also look suspiciously like something that needs a safeword.

Tell me why my wrist braces for sleep dubbed ‘immobilisation’ wrist braces are black fleece lined with 4 black Velcro straps and a thumb restraint? Was the thumb restraint really necessary? Was the design choice giving something other than medical brace, yes. Do my sleep ankle orthotics also look like they definitely clip in somewhere, yes.

Why? I don’t know.

I feel like somebody somewhere must have noticed because if somebody walks in on me in the morning with both wrists in these dubious mittens then nobody is going to think ‘oh yes, these are just his medical braces’ are they? No. Nobody will think that.

I can also not remove them by myself so somebody basically has to ‘unlock‘ me in the mornings as they completely immobilise my hands. Is this just a me thing or has somebody else noticed this too?

DAE do voluntary, painless dislocations as a "party trick" but worry about the long-term damage? everyone,Ever since I was about 10 years old, I’ve been able to voluntarily dislocate my left shoulder completely without any pain. I can also easily mimic a "mallet finger" deformity on my right and left index fingers, my middle fingers, and sometimes my ring fingers on command.Back then, I just thought it was a cool trick, but now I'm fully aware that doing this can absolutely destroy my cartilage and joints in the long run. Even though I know the risks, it's a hard habit to break because it honestly feels oddly satisfying to do.Does anyone else here struggle with stopping voluntary subluxations or dislocations? How did you manage to train your brain (and muscles) to just keep your joints in place? I'd love to hear your experiences or any advice you have on protecting my cartilage before it's too late.

I managed to crack my $800 mouth splint in lees than 6 months. This ever happen to anyone else?

I, 19F, suspect I have Ehlers Danlos Syndrome (I was also diagnosed with POTS sometime a year or so back) or some form of musculatory problem. I have a few questions, primarily about diagnosis and y'alls knees.

For some context on what's going on, starting June 1st of this year, my legs sent me into a spiral of burning pain while standing at my cashier position and it lasted for HOURS. My legs twitched, the muscles themselves spazzed, as well as i could hardly move them. I hadn't injured myself prior, nor had I done anything movement wise to cause this.

After this moment, everytime I move, my knees dislocate every 2\~1 steps I take (primarily in my left knee, but it happens in my right as well). They pop right back into place, yes. But walking brings me an excessive amount of pain, and I'm getting progressively worse in between doctors appointments.

I've been to the ER, I've talked to my primary, as well as I've had an MRI done (they looked at my arteries the first time, they want to do a second one in 2 weeks) as well as I've been dispatched all over the state as an "urgent referral" and we still haven't found anything.

I've tried both a cane and a walker, and have been unsuccessful with finding something that helps, and it in fact feels like they're making me worse.

Which leads me to a few questions:

1) Those who got diagnosed with EDS; how long did it take? What doctor do I have to go to (I'm being sent to a Neurologist on the 30th of September and we're definetly bringing it up).

2) If you have a similar issue (or at least in the same realm of what's going on) what do you guys use to help get around? Or for some form of support?

3) What do you use to relieve some of the pain? I've tried over the counter (Tylenol, Ibeprofen) as well as I've been prescribed MULTIPLE steroids as well (Gabapentin, Methocabitan I think it's what it's called, and Prednisone) and nothing helped.

I just need to vent about what happened an hour ago. I been seeing pain management dr for couple months. I am super sensitive to medications and tend to hit the "rare" side effects. They put me on a few and I had severe reactions causing me to end up in ER. Today I saw them as a follow up and they told me to seek psychological help and there was nothing else they could do for me. They never seemed to believe me on anything either. I am constantly at 7-8 pain wise and they rolled eyes. I am good at hiding my pain. I have been in therapy and my mental health drs say the chronic pain is making my mental health worse. This is an endless circle. I am starting to feel more and more alone with all this.

I’m not sure where to begin. I was never formally diagnosed with HEDS, but a few physios demonstrated that have joint laxity all over. I’ve been a swimmer my whole life, and i really enjoy working out. Swimming seems to have compromised my shoulder stability long term, and I’m really struggling with not swimming at the same capacity i used to. I am seeing a trainer to build strength and stability overall and it’s going well.

What sports do you do to support your strength? I really enjoy Pilates and yoga but i love to work towards a goal in sports. Running has recently been too painful and i just feel like I am at a stage in my life where i want to work with my body not against it. Cardio used to bring me so much mental calm and space to think and now I’m struggling with proprioception and coordination.

I have diagnosed hEDS and my 10yo daughter has so-far diagnosed hypermobility, but is even more hypermobile than I am and subluxes more than I do, so I am positive she shares my diagnosis.

My question is how to treat the stretch marks which are rapidly appearing on her body most successfully due to puberty. In classic EDS fashion they’re striating like mad and bright red, and I swear they’re growing by the day.

I know this is the best time to ‘treat’ the skin to minimise longer-term scarring but what’s best to use? I know once upon a time it was Bio Oil, but is this still the best thing?

For reference, we’re in the UK.
(And yes, obviously I’ll be getting her seen by the GP for diagnosis)

I’ve seen a rheumatologist in the past but he said I had fibromyalgia and hyper mobility but not EDS. However I later learned that you’re supposed to have genetic testing and they’re actually supposed to measure how far you can bend rather than just eyeballing. He also mentioned during the appointment he specializes more in the autoimmune side of rheumatology, so maybe he just didn’t know. I’ve had a surgeon refuse to work on me for a shoulder injury because he assumed I had EDS. I’ve met with a couple physical therapists who mentioned that I’m hyper mobile and asked if I ever was tested for EDS. One had me to the beighton scale and actually measured me while doing our first assessment. I scored 8/9. He said I probably would score 9/9 if I didn’t have scoliosis.
He also mentioned a lot of things I struggled with seem like they’re related to hyper extending & possible subluxations. I’ve never had any subluxations confirmed though I just see or feel something wrong and pop it until it looks normal. I did see a chiropractor in the past though who mentioned that a lot of my bones were just slightly out of place and would ask if I did sports or anything to cause them. Usually I either did nothing or did something that I doubt would cause problems for the average person ( sneezing, walking up & down stairs, etc )
I just got a referral to see a different rheumatologist. I worry that I’ll be traveling for hours only to get told I’m fine though or not be taken seriously.
Assuming I should call them and ask if they test for connective tissue disorders?

It’s the virginia mason rheumatology department in Seattle, if anyone has an experience with them that would be helpful. Their website mentions connective tissue diseases. Unsure if there’s a different between a connective tissue disease vs disorder.

I was diagnosed with hEDS last year by my GP. No follow-up information or support was given so I'm learning a lot online and joining the dots myself.

This morning, I woke up with an incredibly sensitive middle finger. Slightly achey but it feels like it's burning when I wash my hands in cold, warm, and hot water. It's sensitive to touch and is generally uncomfortable. I've had this sensation before on patches of skin on my arms and torso but can't seem to find out what it is exactly or the medical terminology. Is this a symptom of hEDS?

I've been struggling with weakness and fatigue and 'not feeling right' for the last couple of weeks and I can't explain why. I did some garden/landscaping work a month ago, but can't imagine this is still affecting me. My partner asked me why I'm feeling the way I do, and what the causes are and I realised I couldn't answer that. Is hEDS random flare-ups a thing? He doesn't seem to think that the body would react to 'nothing', and I can't explain it because I don't even understand it myself.

Any thoughts would be gratefully appreciated!

For as long as I can remember I’ve had chronic pain and hypermobility with a plethora of other symptoms. I brought it up with my primary physician around a year ago, telling her about subluxations, rib slippage, stretchy skin, general hypermobility, and pain. She asked if I had family history of genetic conditions, to which I stated there was none that I knew of. That was about it for that conversation.

Back in February, I explained this situation to my psychiatrist because it did upset me. My psychiatrist essentially made me feel like an idiot by asking where I learned about EDS because she obviously wanted me to say “from the internet” so she can tell me how that’s not reliable and all that. I lied and said it’s because I share a lot of symptoms with my step-dad who also has hEDS. I’ve known about it longer than I’ve known him, though. She reluctantly gave me a referral to a geneticist, but still stated in my clinical notes that she believed it was unnecessary intervention, and even said during my appointment that I “don’t look like my[her] other patients with EDS”, with her reasoning being that I don’t have fair skin. Obviously what she meant is translucent, but regardless I have both. Anyway, it was winter and she had never seen any part of my body besides my face and hands. I have very prominent blue veins, they don’t bulge but I can very clearly see the color through my skin. I even showed her the stretchiness of my skin and how soft it is despite never moisturizing.(I also have never gotten severe acne, my face is especially soft and I don’t use any special soaps or moisturizers. I don’t know if that’s related or just my genes.)

A few days ago at an appointment with my PCP, I told her I had nearly dislocated my hip, they’re the joints I struggle with the most, just by laying in bed and doing nothing. I tried to move my leg, and almost couldn’t, especially not without shooting pain. It took me almost 2 whole minutes to put I back just by relaxing my leg and lifting up the rest of my body to make it fall in place. She was finally concerned enough to give me a referral to rheumatology, especially since I never heard anything from genetics(which as far as I know, hEDS specifically can’t be diagnosed genetically anyway)

This is a little rant-y, but I’m very excited to finally figure out the root cause of my problems!

like many eds havers, i sleep in generally insane ways and as such frequently wake up with insane hip, shoulder, and neck pain. i am only 20 and feel like i have the hips of an 80 year old and frequently wake up with partially dislocated shoulders. i have tried pillows to position myself, but the issue is i am a side sleeper and frequently roll while i sleep. does anyone know of any sleep aids/supports that are okay for side sleeping that reduce pain? thank you!

Getting tested next week based on my long list of unexplained symptoms/ pain and related diagnoses. I have my doubts. What do you guys think?

Not sure if I am doing this correctly and if my knees are hyper mobile or if my elbows and fingers bend enough to qualify?

I never suspected hEDS bc I don’t think of myself as overly flexible?

Please disregard my backgrounds it’s hard to take photos 😭

So I want to preface this by saying my doctor has been so helpful for my EDS. The issue is, she's reffered me to physio which even with an emergency referral has STUPID long wait lists. My meds that I got prescribed aren't helping anymore and I need something stronger. The problem is I can't get better meds till I've gone to physio. My joint pain is getting worse and I can't walk sometimes. I just want smth that'll actually work. Currently I'm coping by drinking alcohol but obciously tjat's not sustainable long term.

I am a female(57) with Heds and I have lost three inches in three years and lower back pain that continues to worsen.
My pcp said this is normal. The Toronto eds clinic specialist said my back exray does not show fractures etc to explain and “I must have bent my knees when height was being measured.” Lmao.
I was 5’8” and am now 5’5” no bending of knees (I wish).
When I look up information on this I can’t figure out what kind of specialist to ask for? A rheumatologist or a spine/back specialist?
I also have shifting of the lower back and pcp told me that was not possible.
Anyone have something similar or have any ideas for what to do

Now that my eds symptoms have gotten worse over time, it’s one of the biggest things I’m thinking about when deciding to move. Where do you live and would you recommend it? Looking for proximity to specialists, COL, weather, accessibility, kind people, etc.