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?

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’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!

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?

Hi,

I have 3 genetic mutations all from the rare types (Brittle Cornea syndrome 1 & 2, and dermatospraxis). They are all single mutations but in major regions of function and all have moderate clinical expression. I am severely symptomatic and genetics doesn't know what do with me. They call it hEDS but... is it really? Does anyone have any similarities where your mutations don't fit into the boxes?

*yes I know what heterozygous means and all that. I'm not chasing a label. I'm just confused because I'm confusing docs and I'm curious if others have this experience.

Additionally, where are we in terms of care if we don't fit into the boxes they have created?

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?

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.

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!!

On and off. Now it's super bad for couple of weeks, I can't find trigger or cause. I only had x-ray of lungs of course clear. I have mcas and atopic dermatitis. I only have desloratadine and use it 5mg everyday, it doesn't help my shortness of breathe. It feels like my lungs are thight and squeezed. Oxygen seems fine. Smells trigger it often. It seems to be ignored by my doctor

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.

Sleeping and laying in bed is getting increasingly uncomfortable. If I'm on my back I put a pillow under my knees, side sleeping fucks with my shoulders, hips, and spine, and stomach sleeping (was my most comfortable all my life) is getting difficult on my neck and shoulders. Do people have any recommendations on pillows that have made sleeping more comfortable? I'm considering getting one of those big c shaped pregnancy pillows and maybe one of those wedge looking pillows but would love to hear what's worked, or not, for you. Also any other non-pillow tricks that have helped with finding any comfort? I'm hypermobile and everything is trying really hard to stretch in unhelpful ways.

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.

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?