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’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

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 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 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!

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.

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!!!

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

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.