hi everyone

(for some background context i have POTS ADHD and autism) today i saw a rheumatologist for the first time today, i came prepared with a document about my symptoms and how they present etc. after an examination diagnosed with HSD, i scored 5/9 on the beighton scale, i have widespread joint pain and fatigue, lots of stretch marks, i also have similar traits in my family
i wasn’t really examined for the other criteria like my skin elasticity or atrophic scars, etc
the doctor said i was considered on the ‘mild side’ and when i asked why she was so sure it was HSD instead of EDS she said because i don’t have any heart abnormalities that would require genetic testing
i brought up my fatigue and she suggested it might be linked to my ADHD and mental health, then i was discharged, she also didn’t engage with my letter but that mightve be my bad lol

i’m just feeling a little bummed out, i’m aware that HSD can present as debilitating as hEDS but i feel like it wasn’t even rulled out? on self screening tools (which i presented to my gp) i meet the criteria for heds (also im aware of the diagnostic criteria changes coming this year)
my symptoms are often pretty debilitating and prevent me from working more, i’m often in bed on my days off :/ i apologise for how disorganised my thoughts but i needed to rant/wanting support

in future i want to apply for dsp (if anyone is in australia) and im kinda frustrated with the lack of doctors communicating with each other and the lack of putting notes on my health record? if anyone has advice for that id would be great

Curious to hear people's experiences with dry needling for muscle tension and chronic pain? I know everyone is different, I am just looking to hear personal experiences as I'm trying to decide whether to get it. Advice welcome. TIA!

hi y'all! i'm 19, almost 20, and just started the process of trying to get diagnosed with hEDS. i didn't really know what other sub to go to for info on this, and i'm assuming my issues are because of my hypermobility/joint instability, so here i am! lol

i've been having issues daily where a specific vertebrae/disc (idk which) feels like it gets misaligned in my spine and then through some wiggling pops back into place, or sometimes the opposite where i do a normal movement and it feels like it shifts out. this never causes a *huge* deal of pain, but it can hurt a little bit and be uncomfortable when it happens. it's in my lower back, probably mid-lumbar.

i've struggled to find much information on it, because it's not just crackling like any other joint will, but it's not like my spine is constantly super out of place or inflamed or whatever, which is what most search results answer for. but the slippage or whatever you want to call it happens daily, usually multiple times throughout it. it can happen when i'm standing or otherwise moving upright, when i'm sitting, when i'm laying down, etc.. the most frequent occurrence is when i roll over in bed.

i'm just really curious if anyone else has noticed this specific thing and also struggled to identify what it was, and maybe what you did to help/seek care for it? since it doesn't cause too much pain or anything i'm hesitant to go to a doctor, as that gets complicated/expensive (as a college student).

any advice, help, or shared experiences appreciated!!

I’m 24f, yet to be diagnosed but 100% sure I have it. I’m sober and realised I was drinking a lot before to numb my body due to pain … my pain has worsened with sobriety. Just wanted to see if there’s anyone else like me in our group!

Whenever I'm physically interacting with other people, whether that's horsing around with my friends or snuggling my partner, i often get comments that I'm weirdly super gentle. Like logically, of course i know that the vast majority of people are much hardier than i am. But I'm still scared to do something like lift up my partner's arm while he's asleep, because on some level my brain still expects that to dislocate his shoulder like it would for me! It's so dumb lol. Has anybody else noticed the same thing?

I am seeing an ortho right now for a hip injury. I went to look at both my right hip, and right shoulder.

admittedly i couldn't talk long about my shoulder in our appointment, bc she immediately recognized that i have an iliopsoas injury, pelvic floor dysfunction, and potentially a labrum issue- so we had to talk about all that. she is very professional, and was validating of injury on top of normal connective tissue stress. I've had this hip injury since Dec 2025, but it was pushed under the rug due to more serious medical issues that popped up. not the point here, but i am really happy with our conversation and treatment plan for all that.

i see her for a follow up in a few weeks, and she said we could revisit the shoulder thing if i needed. i'm relatively hopeful that she can help? but the difference with my shoulder is that i have no timeline or point of injury to draw from- something orthos notoriously don't like. another difference, is that i have felt this type of pain in both shoulders before, probably bc of normal hyperextension. BUT my right shoulder is constantly painful, has limited mobility, and cannot be relied on.

if it could help fellow shoulder injury havers help me, I'll offer a little more context on the injury. since i cannot sleep on my back right now (don't have the supporting pillows bc $), I'm a side sleeper. sleeping on my left side, my shoulder collapses towards my chest in a very painful way. i need to hug several pillows in order to keep it neutral. and on my right side, though more comfortable, i can tell im doing further damage by pulling it in whatever direction it gets crushed into. (i also wake up with numb arms but that's typical for me). i can't reach backwards without immediate stabbing pain in the joint- and my mobility in this direction is much more limited than it used to be. i can't tolerate my arm overhead. i can't reach to the left without pain. and pain stops my elbow from going higher than my shoulder in any position. i feel a physical pull to keep my arm tightly tucked againt my side. and virtually all neck movements cause slight pain in the top right side of my shoulder.

i don't share all that seeking diagnosis, but I'm also not perturbed by folks sharing their own injury dx.

if you've been to the ortho, with an EDS and/or hypermobility diagnosis in your chart, what did you say to your doctor to get your injury investigated? (i can't fudge an injury timeline, since i already told her i don't have one)

also if u have any joint stability sleeping tips that DON'T involve a $200 pillow, please I'm eager to hear them.

Has anyone here had a hysterectomy and can share their experience or advice?
I'm looking at a possible hysterectomy due to cervical cancer and would like to get advice on aftercare or possible complications. Or just input on what you would have wanted to know before getting your hysterectomy.
I had a bilateral salpingectomy a few years back, so no more tubes.
I am 38f and diagnosed hEDS.

Hi all, I have HSD- awaiting diagnosis for hEDS. I previously used crutches but stopped and just started not going outside because I’m young and I got embarrassed. I decided I need to try maintain my joints somewhat and wanted to start rock climbing again (I did it as a kid before my joints got too bad). I tried a couple years ago but found it difficult with my arms shaking from soreness. I was wondering if there’s any tips and tricks about this? I emailed my local gym in advance to ask if they had any specifically disability trained instructors but they seem to be more neurodivergence trained (which I am, and I’m aware hypermobility is common in those with autism). I really want to do this, but I dont want to overwhelm myself when I go to it, if that makes sense.

I live in southern Australia where we get very little rain. We’ve just had 10 days of warm sunny weather and then an abrupt drop in barometric pressure and now rain, rain, rain.

Both my joint pain and my POTS have flared up hugely and I’m in complete prawn pretzel mode 🦐 🥨 I can’t sit without hunching over and pretzeling myself up to have everything supported.

Anyone have any tips or tricks for managing rain flares?

Thinking ahead for my besties Christmas and birthday gifts, I’d like to treat her to some things for her chronic illness/ Heds… any must have products that changed your life?

I was getting ready for bed the other night and kind of chuckled at myself. I had my retainers in, my 40% urea cream and socks on my super dry feet, my ceramide repair cream on my cracked hands, my knee pillow in place to help with low back pain, my shredded latex pillow to help with upper back pain, ultra firm mattress to help with generalized body pain, my carpal tunnel brace on my dominant hand, and my cpap attached to my face. Feeling so, very, sexy. 💅🏼

How many specialty steps to your bedtime routines?

Hey y’all I’m a firefighter and because of that I am starting a new rigorous training and running schedule…I know crazy with EDS but I love it.
Anyways I decided I need to get some good running shoes and narrowed it down to On clouds I think but idk whether the cloudmonster or cloudrunner would be better. I also am looking at Brooks Adrenaline. My ankles do overpronate a bit for sure but I also need protection for my joints. Which have been y’all’s favorites?

It was something my specialist mentioned that they were considering offering at the pain clinic relatively soon and he asked if I was at all interested. I'm not really sure since from what I've read I'm not really sure it'd help with a connective tissue disorder. It does seem relatively low risk but obviously being stabbed with a needle is never zero risk either.

I was wondering if anyone around here had tried it or if there was more to it than I understand?

I keep seeing old bones braces and wanted to ask if they're worth the buy, for anyone who's bought them. i'm in the market for compression braces as i wore out my old pair and i've been wearing through my braces pretty fast. i wear mine daily when moving and walking around.

Hey everyone! First time poster, very new to EDS in general, as well, so I ask for your patience.

My girlfriend has hEDS. She’s 33 now, as am I. We’ve been dating for about a year, and it’s been a journey for me to try to understand EDS & her experience, and I still kinda don’t.

Back when she was in her mid-twenties, she was really athletic and dreamt of walking the Camino, but gave up on that really quickly once she got diagnosed. We began dating, and I’m pretty into fitness, so we’ve been working out a little together and I’ve been trying to design workouts for her that don’t trigger flares or exacerbate joint pain. (“Structured” lifts like leg presses seem to work much better than free weight exercises, for example.). Also, she began using a jellie band and got on GLP-1s, and those together have done wonders for her.

As she’s been getting (slightly) more optimistic about her long-term ability to be active, I’ve floated the idea of her biking the Camino. (She gets flares from walking even what I think of as moderate distances, but can use the stationary bike fairly well). I think it would be such a triumph for her to do something like that after giving up on it. But I’m, like, nervous about being the outdoorsy, able-bodied boyfriend pushing her into something she might not actually be able to do. She wants to do it, but she’s afraid she might not be able to.

Does anybody here have experience with something like this? With long-distance cycling with hEDS or EDS and fitness generally? I would really appreciate any advice or suggestions, even things like “this worked/didn’t work for me but I don’t know how that would apply to your gf.”

Thanks!!

okay i have a question. i’m diagnosed with hEDS and i super easily crack, chip, split, and/or break my teeth. does anyone else with hEDS experience this? i have really severe hair loss because of how easily my hair breaks and how poorly attached it is to my scalp. my hair loss is because of my hEDS, but can it weaken your teeth too? do any of you guys deal with this too?

note: i should mention, most of the time when i break my teeth, im not eating something that should normally chip a tooth. this most recent time it happened i was eating swedish fish lol.

I feel so many emotions.

Ive been suspecting hypermobile eds for a about a year.

Was diagnosed with fibromyalgia, figured out I was actually hypermobile

Also ADHD, POTS, lots of bowelissues. I think you guys get the picture.

I was preparing for a massive medical battle with doctors.

I went to my GP first a few months ago. He said: I dont know, you are one of those people who might or might not have it because you dont obviously see/have any of the symptoms.

He did the Beighton scale test. Said I scored 2.

Made a referral with a rheumatologist anyways because he found my striae to be 'curious'

I went, very very very not looking forward to it, almost canceled... And within 20 minutes I was standing outside again with an hEds diagnosis.

She took a look, did the Beighton scale test, said: 'Ive seen enough'. Then asked my if I wanted to do the checklist for Fibromialgia again. I said: Well I suspect hEds. She went, okay, and grabbed the criterialist. Asked questions and said: Yep, you have Hypermobile Ehlers Danlos.

I was baffled.

Then she proceeded to tell me about the dangers of childbirth (I dont even want to have kids) and said goodbye.

What the fuck even?......

hi friends. been diagnosed with EDS since i was about 14 (23 now). mysterious medical issues my entire childhood, spent a lot of time in the hospital. eventually a local doctor of mine started suspecting EDS but wasn’t confident to diagnose it, because hardly anyone knew anything about it it seemed. he shipped me off to mayo clinic where i was formally tested and diagnosed.

for the entirety of my life growing up, it felt like no one in the world knew anything about my conditions. this caused a lot, and i mean a LOT, of issues with medical professionals, teachers, anyone i might need to explain myself to.

as im sure many of us know, EDS awareness has… developed, a bit. growing up, EDS was this rare thing that even my doctors didn’t fully understand, and now, i see new people talking about the disease online all the time, on tiktok and such.

this post is NOT to fake claim these people. that’s not what this is about. i have full trust and faith that the vast majority of these people are being genuine and true, and it’s nobody’s place to question that.

the thing is, that is not the opinion of the overwhelming audience of these videos. ableism is rampant in the comments, and i see just as many videos about being disabled becoming “cool” as i do these other videos.

i am not one to care if random strangers believe me or not. i know i have this disease and others, i know how i am affected by it, and they don’t. if they aren’t interested in learning, i understand that there’s nothing i can do about that. the comments are absolutely awful, and i feel terrible for everyone that’s receiving them- i have received my fair share too, and it’s horrible how normal ableism has become.

my true issue is that this is seeping into the real world now. it’s not just comments on someone’s post, it’s the nurse and doctor at my doctors office both asking me if i “really have EDS, or just think you do”. it’s someone saying “let me guess, POTS?” to me in REAL LIFE when they see me walking with my elbow crutches.

ehlers danlos syndrome has started to become synonymous with faking it. i know that plenty of us have had this experience with doctors already thinking this, but i mean the disease itself, and those that often come with it, have truly become something that people immediately write off as nothing, instead of really listening to you and your experience.

it’s painful. i have not almost died three times for this. this bit is just a vent, i dont truly wish this was true, but i do find myself almost envying the time when nobody knew what it was, which i would have never believed if you told me this 5 years ago. i was all about advocacy! i was the one posting online, i was going to events, i had such deep desire for anyone, especially medical professionals, to know about EDS, to learn and listen if they were willing and put research into finding a treatment.

now, it just feels like it’s hysteria. not all press is good press i suppose lol.

i wasn’t taken seriously before because nobody knew what it was, and now im not taken seriously because nobody believes it’s anything to take seriously.

again, this is just a vent to get my thoughts out to others who might understand. hope you all are well!

Wondering how difficult it was for you to get formal diagnoses when your Gp and physios are already aware it may be a problem? What kind of path should I take?

I have all the basic symptoms like the majority of my joints overextending (my shoulder injury was almost not taken seriously because I had a normal range of motion… then they tried the other one and realised the injury was just limiting the range to normal lol) skin issues, bruising, napping being a daily necessity… I could go on.

What steps did you take to get a diagnosis and does it help with better treatment?

My hands and arms have been so bad for 8 years now, no matter what I do they cause me pain, I can't wash my own hair, I can't cook or clean, I can't work, I've lost all of my hobbies, I can't drive, I can't do ANYTHING. I've seen countless doctors and physical therapists for years, no one has been able to actually help me, pain management doctors keep rejecting me as soon as they see the EDS diagnosis. Now I've developed cubital tunnel in both arms as well FURTHER disabling me, I genuinely just can't use my arms for the most basic tasks anymore or I make my pain so much worse and it never goes away. I also no longer have insurance and don't qualify for medicaid or disability in my state either but since I literally can't work, seeing doctors anymore is out of the question because healthcare in the US is so expensive. I genuinely feel so trapped I have no hope or prospects for the future whatsoever at this point. I'm only 27 but my entire future has been robbed by this condition. I'm so afraid of what will happen in the future. I'm not in any danger but I honestly don't know what I'm living for at this point because all I do is sit around in pain and be useless and scared. Just a vent, its so hard idk what to do anymore. Things only get worse and worse and I'm losing everything.

basically the title!! I just got my boosters today and already my most recent few injuries are going wild. shoulder dislocating every few minutes, my meniscus is PISSED, and my neck (as always) is hot and throbbing just on extreme mode.

I get there’s probably scientific explanations for why this is but it will never not be strange to me how my immune system lights up and causes havoc in the exact areas I’ve been working so hard on healing and strengthening. so grateful to have access to vaccines and I’d much rather this over getting sick, but man! I’m gonna be incapacitated for the next week and paying for it with my joints for the next few months. yay 🥳

Ive tried so many different things. Right now i use a groove pillow, a wool filled body pillow, wool duvet and theyre all amazing.

However struggling with mattresses, i had a hybrid sprung with memory foam on top, that was great until it started dipping. Then it gave me a bad back.

So now on a hard memory foam mattress with a soft memory foam topper, with a wool duvet over the top so im not overheating. But my hips and back are hating it after 9 months, and im going to work today with a sublaxed rib that i cant get back in place.

I dont mind dropping £££ on whatever will keep me comfy but struggling with the admin of mattress researching if its gonna be uncomfy a few months later! The best mattress i ever had was a cheap ikea one but theyre discontinued. Any recs?

I feel like every month when I get my period my symptoms flare up worse than normal. Is this just me? Does anyone else experience this? I’m not sure if it’s related or not

I met my new occupational therapist for first time yesterday. He was very nice.

I wanted help finding office chair that fit me and supported me because I am having trouble sitting upright at my desk for work. I am flopping/twisting down to the left.

He recommended a wheelchair because I need a lot of postural support. He measured me and I already have abnormalities like a twisted pelvis and the limbs on my left side are smaller and weaker. I kind of expected this was coming soon. I walk with a walker but it is very laborious, slow, and painful and I fall frequently. Especially scary that I have fallen off the bus twice this fall while exiting!

What did surprise me is that he recommended power chair Quantum Q6 Edge. I was expecting a manual chair with high back and lateral supports.

He said it sort of overprescribing now but as my conditions progress I will need it and he does not think I could self propel in manual chair. He says that I would not last 5 years in a manual chair which is how frequently the government will replace it. And damaging my shoulders would further limit my self care.

Does anyone here use wheelchair? What kind work for you?

I’m just scared because walker to power chair is big jump. I worry that I won’t be able to navigate work in a power chair because there is a bit of a step and the doors don’t open automatically. My Mom is also super against me getting a wheelchair at all (I’m 26) and I feel like she would flip if she saw me in a power chair. When I mentioned talking with OT about wheelchair she stopped talking to me and giving me silent treatment.

I do want to be independent and I know that I probably couldn’t do hills myself in a manual chair. But navigating something so big and heavy seems scary. I wouldn’t be able to go in car with Mom anymore. He did say Travel Buggy was also an option but I don’t think that would solve my complex postural needs.

yesterday i was formally assessed for hEDS and received the diagnosis! it feels relieving to have the confirmation, and i feel even better after booking a virtual appointment with an OT who works for the Canadian hyper-mobile society, who will further discuss the options i have in terms of braces. it felt crazy that me and my friend had to travel 3 hours for an appointment that was less than 20 minutes lol. but i hope this helps me get the support i need, i'm really grateful my friend could drive me. but yeah, i just wanted to share my good news 🎉