For years, every time, every physician or professional held my shoulders back and told me to hold them there.

It felt wrong and my shoulders would always bounce back forwards. It hurt to keep them rolled back. No matter how much exercise ans training I tried.

Well I'm currently 1 week post op from a surgery that releasesld the muscles holding my shoulders (scalanes, pec minor)

Turns out it was physically impossible. I had extra abnormal muscles and fibrous scar tissue from multiple shoulder dislocations all pulling my shoulders forward and up. Killing my traps.

But whenever I held my shoulders back it caused those muscles too squeeze the nerves and arteries shut on both sides! Aka cutting off blood flow to my arms!

So it was physically impossible for me to roll my shoulders back.

Now after surgery. My shoulders sit back. There's no fighting them. There's no holding them in place. They just naturally let go, have settled down and back and it's amazing.

So I hope this helps some people feel better if Physio and nothing else helps them either. I was told that it's my fault and I need better discipline for years but surgery proof that it was physically impossible for me to hold them back in the "correct posture ".

I had horrible ears infections, it's had been 10 days my antibiotic didn't do anything. I went to the emergencies (european country so free) and they gave me ciprofloxacin for 7 days. I was so tired so I forgot to tell them I've hEDS. I discovered yesterday the link between EDS and this med and now I'm scared I might have so awful side effects!

It's been 3 weeks I finished the meds and now I've some articular pain in my right ankle!

I just passed out in the gas station for the millionth time. Like I’ve passed out or had a medical issue so often there the entire team already knows me and what to do if it happens. I live in a very small rural town so if you call an ambulance or I go to the er there is an 80% chance the people in the rig/the doctors and nurses will know me.

It’s a tad embarrassing but it leads into my topic of: if you’re anything like me you’re constantly at doctors appointments, dealing with emts, the er, etc. honestly I know people tend to be derogatory with the term frequent flyer but I say we should be able to wrack up points. Like 2000 points is a certain amounts of money off your medical bills.

i’m a trans guy w heds and i don’t know if im the only one who seems to just be stuck hearing transphobic/ableist comments constantly but it’s exhausting. i grew up in an extremely ableist + antivax household which is a massive reason why i didn’t get my diagnosis’s (heds, autism, pots combo plus many potential others) until my 20s and i escaped that shit but it doesn’t even feel like it anymore, i’m so anxious about ppl claiming im faking while seeking support especially because im trans, i spent years gaslighting myself and convincing myself i wasn’t actually in pain or that i was being dramatic about it but this year especially my health has taken a massive nose dive to the point where im essentially bedridden except for when i have to go to work and my quality of life is completely dogshit. i want to get better i want to live a normal life but im so afraid of the assumptions that’ll be made about me from medical professionals that getting help feels so difficult. i have my main gp that specialises in heds and hes amazing and the whole reason ive been able to get diagnosed and medicated but i have such a hard time communicating how severe things have gotten. im completely independent and lost any friends i did have when i got really sick in 2024 so i dont have anyone to even talk to about my health problems i just feel really alone and anxious. this is a big ramble im sorry but im just really struggling

hi, i likely have HEDS and i just discovered this community. not looking for medical advice obviously, but does it ever get better especially with treatment? i thought it was super cool to be flexible and "double jointed" as a kid but in the past few years i've felt just exhausted physically and mentally. i've gotten 2 sprains in a year from just simple stuff. how do you guys cope with the mental impact and fear of spraining things over minor impacts? i was fine with my ankle sprain but i sprained my finger simply from hitting it on a cabinet and it's made me terrified since i work with my hands.

sorry if it seems like i'm breaking rules, i really do mean i'm not looking for medical advice ! i just want to know how you guys keep yourselves from feeling so drained mentally from it

Was having trouble falling asleep last night, then my hips started aching for no reason and then I really couldn’t fall asleep. I’ve been having hip issues ever since I started doing Pilates videos at home (which I’ve since stopped) and it’s usually exacerbated by lots of walking or just existing lol but I have NOT had a hip pain flare this bad, ever. It’s probably a 6 or 7 on the pain scale (out of 10 - my baseline for me daily is like a 3) and is such a deep ache and pain. I feel like I keep grinding my teeth because of the pain and achey-ness. I’ve used a muscle cream, heating pad, and I’m about to pop an Advil. My husband suggested taking a muscle relaxer before bed tonight so I might do that if it continues through the day. To top things off, I’m on my period and have been moderately cramping with a heavy flow today 🥲🫩 I feel like I am about to have the most astronomical crash out ever over this lmao I am in the trenches y’all!!!

Anybody’s feet feel like you’re breaking your bones when you get out of bed? I have to stumble around for a minute or so before anything works or doesn’t hurt. Feels like my feet almost can’t flatten and function? Will sometimes show up after shorter periods of rest too.

I have recently bought compression socks and a compression belly thing. My work requires me to stand for long periods of time and it is frankly exhausting being hyper mobile and having to stand for so long. The compression has helped so much and it is a relief to put it on!!! I cannot recommend more. Please try compression.

I've been trying to find a good pillow but it's extraordinarily difficult because of my specific mix of issues. The only ones that I've found that would cover all three of my issues or at least not make one worse are really expensive. Any suggestions?

I don't know our exact budget since I'm still a dependent (getting an actual answer from my caretakers is also difficult 🫠), so I'm fine with a variety of price options.

Hi all, I mostly sleep on my side but sometimes switch to my back. I often wake up with neck/shoulder/back pains. I was wondering if anyone has tried those kinds of cervical spine pillows and if you found them helpful or not? I would hate to spend more money on another piece of crap to keep in my apartment. If you have specific brand recs or other pillow recs, I welcome ideas!

Hey connective tissue complicated people,

I am a 23 y/o F student (long hours typing) and at the moment dealing with arm/hand weakness which GP said likely CTS, which have had on and off for past year or so.

Would love to know your experience of progression and what have found helpful to not progress. I honestly didn’t realise causes your hands not to respond/ weakness.

I say carpel or cubital as now that got brace, my pinky and index are tingling, so has made me think maybe the other nerve is the one irritated but time will tell (testing).

All experiences and thoughts on what has helped not progress is super helpful as well obviously I would like my hand function.

Also any recommendations for braces to restrict elbows hyperextension, would love to know.

I doubt I’ll find anyone who has had this experience or anything similar but I’ve spent so long dealing with this that I have to give it a shot.

In 2021 I (15y/o at the time) had an Evan’s calcalneal osteotomy on my right foot to fix my flat feet, and I’ve had the most unbearable nerve sensation on the lateral portion of my foot since.

I’ve spent every day for the last 5 years trying to think of a way to put this feeling into words. It’s not painful at all, but when I (or anything including water, blankets, shoes, etc) touch my foot it’s the most uncomfortable feeling that makes me nauseous and makes my skin crawl. It’s like the skin itself is so hypersensitive but also numb. And if I touch my foot in one area, I feel the touch in a different area of the foot. It’s like my nerves are all scrambled up.

None of that probably makes sense, but I can’t spend the rest of my life dealing with this alone. If you have had anything even remotely similar to my experience, please please please share.

i was in an abusive relationship for 3 years. i knew i had EDS before i got with him. he forced me to stand a certain way, which caused severe subluxations over the years. i’m practicing working on the muscles that went dormant over that time, and it feels like a million pounds have been lifted off my chest.

i won’t go into any details, but he forced me to stand with my shoulders down and back hunched, i haven’t been able to move my neck much over the years and now i feel like an owl with how much mobility i have now! it feels amazing

there were times he forced my legs apart, and i lost almost all mobility in my hips. now i can sit and stand with ease!

the point of this post: the tension in my body from forcing those positions and along with the tension from abuse made me completely nonfunctional. only once i was able to let go of that tension was i able to really feel better. for anyone really struggling with chronic tension, working on that could make your symptoms way more manageable

hey all! i was diagnosed with hypermobile type EDS back in 2015 and have had chronic gerd with 2-3x monthly flareups since i was 17. docs explained that it was my esophageal muscle not working right bc of the EDS. i’ve learned to mostly manage it and have my flareups down to a reasonable amount and manage them well with cimetidine and rolaids, but it’s still no fun. i’ve noticed also that whenever i take an edible i have pretty severe flareups, which sucks because well. sucks! does anyone else have this experience? any ways to mitigate it? cheers!

I have been in the throes lately and I am constantly exhausted and dysautonomic symptoms are so hard to manage. I was diagnosed with hEDS back in April, and still haven't been formally diagnosed with POTS. I started wearing a visible band to get a feel for what my day to day energy expenditure actually costs, and between that and oura the only thing I've learned is that my body is as tired as I think it feels.

Point of this message is that I have a trip planned from NY to LA from 10/27-11/1 and I'll be seeing one of my favorite bands ever (MCR 🤘🏻) but I am so anxious about traveling while feeling like this and for the show itself. I ordered a rollator just to be able to navigate the airport and try to be able to enjoy LA a bit but i am so nervous that just traveling will level me so much that I am 3000 miles from home and too tired to do anything at all.

Help!

My boyfriends chair broke. He likes the one he has, which is the same I currently have. I thought about giving it to him and getting a different chair, the white one in the first photo. We currently each have the chair in the second photo. I like it when I sit normal. Sometimes I stick a breastfeeding pillow on the seat and sit where its under my knees and wraps around the side of my hips to hold them in. But as you guys know, people like us tend to sit weird lol. I usually sit in weird positions because it feels better. Legs all over the damn place. Thats when the chair isn't comfortable.

So the question is, do any of you have the white chair in the first photo and what are your thoughts on it?

Edit: I AM SO SORRY!! I fell asleep after posting and now I'm at work (bathroom break hehe). I realized the second photo did not attach. I cant get it to now lol. Its basically a regular ergonomic chair with the mesh back and seat and lumbar support.

Heds/sjogrens/mcas handler. It feels like severe growing pains all over, spasm areas are shockingly painful to touch. Standing hurts. Sitting hurts. Walking hurts. Staying still hurts. Clothes hurt. I’ve taken flexeril and Aleve 6 hours ago and flexeril and Advil and flexeril 6 hours before that. I’ve tried ice/heat, lidocaine patches, etc. it’s a 7-8 on the scale we use. I have so much to do but I can’t effectively move, squat, bend, or reach.

These diseases suck and I hate them.

I work long hours, and pass out hard when I finally go to sleep. I have a problem of sleeping on my stomach with my right arm put up under my head. I often wake up in extreme pain my shoulder/upper back. I used to tie my arm around my waist to keep it from happening, does anyone else have a better solution?

why isn’t gumby he the face of hEDS.

hi, i really need help.

before i ever knew i had EDS (and POTS and MCAS and all the rest) i tended to stay in shape without much effort because i actually enjoy fitness, whether it’s weightlifting in a gym to hiking a mountain.

everything became harder for me about two years ago. i still don’t know why. maybe it’s stress, hormones, a flare (that i couldn’t have recognized at the time), something else or a combo, i felt tired all the time. even everyday motion felt like it took more out of me.

cut to now, i have no resilience whatsoever. i am constantly tired. i try to exercise, knowing i am operating at a level far below where i was, but now i get horrible DOMs even to the point of feeling like i have the flu.

i’ve been working with a physical therapist and after weeks of paying the copay and showing up, i don’t feel any better, i just know all of these limitations and my body doesn’t feel like mine anymore.

please, i am begging: if anyone has been through this phase and gotten through it to the point you can be active again, please tell me how.

if anyone just knows what’s happening and how i can get through it, please tell me.

if there is some medical provider or fitness professional or whatever, anyone who can help, please get me in touch.

i need to fix this now. it’s clear that i will never suddenly feel like i have the energy, and that each day i am just getting weaker, which means it is getting harder.

with all the alternative wellness approaches out there, all of them offering the promise of “finally feel like you again” for $1000+, i truly don’t know what to do. if i knew it would work, i’d gratefully go for it, but i absolutely can’t keep wasting my time and energy going in circles either doing nothing or going in the wrong direction.

in the meantime, i am going to try to do 20 minutes of some kind of movement every day and hope that my body actually starts rebuilding muscle, enough so i can get to a point of consistent exercise, not just movement, and really make progress.

Disclaimer: I am not seeking any form of medical advice. I have a team of doctors that I see regularly and I got the "health" side of things kind of working. Also, this is a random throwaway account I made awhile ago, mostly because I dont want this on my regular account. I haven't been very public about my hEDS only because I'm just not sure about it. And while its nothing to be embarassed about, I guess I just feel weird about having it. Like people look at me and think "you use that as an excuse for everything" if that makes sense.

So, I recently was diagnosed with hEDS about three months ago. It wasn't something I seeked out myself- my PCP noticed some things, was very concerned, and referred me to genetics. Bam, unexpected diagnosis. Ive started going to PT for my knees, and i have an appointment to discuss ankle braces and get x-rays, ect. done. (I forgot the name of them im sorry!) Since my ankles have no stability and my knees are definetley super flexible. My issue is... I dont know, I feel like i dont have EDS.

To start, no one in my family has been formally diagnosed with it. Im the first one to have a diagnosis. Ive always dealt with the joint pain and the hypermobility, but i assumed it was normal and just from always sitting/standing weird and "general laziness" (which is kind of from my fatigue. The fatigue has been kicking me BAD recently though). The geneticist appt. I had was a bit iffy. The doctor was super nice, though I "almost didnt get diagnosed." What set the geneticist over was the strange scarring on my back from my cystic acne. (She did follow the official criteria). All of my scars are raised bumps instead of being craters, almost like hard little knots. I dont have typical scarring, but the scarring i have didnt seem relevant to EDS? If that makes any sense anyways. And of course, they're all over my upper back and shoulders. I deal with joints popping all the time, but I've never had anything randomly dislocate. I dont know, I just cant shake this looming feeling of "i dont think I actually have it and im just overreacting about my body."

Did anyone else go through this? I know there are many other forms of EDS that are much worse and debilitating, and i wish this dumb thing didnt even exist, but i just feel like maybe mine isn't that bad and maybe i dont even have it. I know hEDS is "the best one to have if you have one" though of course, its not good to have it at all. Maybe I just have hypermobile joins and deal with some pain from it. PT has definitely been making things worse with my knees in all honesty... and the PT just says its normal. UGH. I dont know. I feel like a huge imposter and I cant shake the feeling. There's all of these people that are lovely and unfortunately deal with this, and then there's me and I feel like i just dont have it bad/have it at all. Its definitely a strange feeling.

Thank you all for listening to my long rant. I appreciate everyone here <3 (from a long-ish time lurker)

I did a very small amount of yard work yesterday and my right knee went out.

It's an injury partially due to hyperextending my knees and working over a decade as an ece teacher (squatting to be eye level with kids).

The weather changing and getting colder does not help.

My hamstrings get super tight and something in the back of my knee hurts.

I've done physical therapy before for it when I had insurance.

I iced it right after it happened. Medicated. Iced more. Put my knee brace on. Then tried to still have dinner with my partner.

I cried walking from parked car to restaurant because it hurt and I had just started to have regular movement back in my knees....

Then I got home and cried. Woke up and cried and wound up sh myself and I am so mad about that.

I hate this.

I hate that I don't have good medical care and don't have the energy to figure it out right now.

I hate every day being a struggle.

I hate that just the way I sleep can injure my body more.

I hate the American Healthcare system.

I hate that multiple jobs have been able to let me go by putting me on unpaid medical leave. I hate that I don't feel like I can exist in the world the way I am.

❤️ Thanks for listening to my vent.

I am safe just fucking miserable and sad and full of fucking rage.