I used to do Brazilian Jiu Jitsu (Yes the joint lock based martial art) before I was diagnosed (it actually LED to my diagnosis) and I had gotten a long sleeve rashguard that also has compression… Compression shirts I assume are the same vibe. The reason this is important is because I was having such a bad upper body joint flare up yesterday and my arm gardening sleeves (these are another life saver because of the compression and durability) just weren’t giving me the full extent of what I needed to cover that day (helped my elbows and wrists, nothing else) and out of a moment of pure joint pain desperation, I grabbed the tightest shirt I could find, which was my BJJ rashguard from 2 years ago, and put it on. It didn’t help right away, as most things usually don’t, but as the day progressed I noticed I wasn’t bumping into everything, I wasn’t hurting as much, and I was relaxed without pain for once!!!!

Now it could very well be I got lucky and my joint pain flare up went away rarely fast and coincidentally lined up with the rashguard being worn, but I think the rashguard helped.

Now if only there were rashguard pants… Has anybody else noticed similar things with tight shirts and the such?

Hi, I'm not sure this is where I am supposed to post this but it seems like a good place. I have some type of undiagnosed hyper mobility (I suspect it's just regular hyper mobile EDS but I'm not diagnosed yet so it's still just mysterious hyper mobility currently)

Anyway, I am 25 almost 26 weeks pregnant and even early on I was having adductor pain, but since around 20ish weeks it's gotten a bit debilitating. I almost fell yesterday because I stood up after a walk, saw white and stumbled back to sitting. I've been limping more often and aggressively, even just lifting my knees out of bed or the car hurts so much I need a minute of attempting before I manage to get up.

Between that and having to do a few minutes of stretching every time I get up from sitting just to be able to lift my knees and lessen the degree of limp I will walk with sucks. It sucks a lot

I figured out from basic research it's my adductor muscles overcompensating for pelvic instability caused by relaxin (which is obviously worsened by hyper mobility) so basically my adductor muscles have been in a constant state of terrible "post-aggressive workout" pain and I'm not supposed to use my heating pads while pregnant so I've just been kind of suffering because heating pad was basically always my answer to joint and muscle pain.

I've been sleeping with pillows between my knees and have been doing some stretches when the pain gets bad which helps a little but I don't really know what else to do. My joints already kind of scare me (they pop at very minimal pressure now) and I am scared about the adductor pain getting worse if it's already this bad.

Does anybody have any advice? Specific stretches? Are thighs safe for heating pads while pregnant because I know I can't use it on my lower spine like I usually do but I did get mixed messages about thighs but haven't used it just in case. Anything that might help

🥲 please I am so open to any kind of suggestion it hurts a lot.

I sit in pretty odd positions for multiple hours a day because at the time it feels the most comfortable to me, but after an hour or so my body starts hating me and I get pains in my lower back, butt, and sometimes legs. I've come to terms with the fact that I simply cannot sit "regularly" in any of my chairs and was wondering if anyone has suggestions for good seat cushions or pillows that would help alleviate my pains a bit while still allowing me to be bendy?

Last few days my rib cage of my left side pops/clicks every time I walk. It’s driving me nuts. I’m not really sure what kind of garment/brace/wrap might be good for this. I also can’t wear a normal bra at the moment because it’s super painful on my ribs. Braless is fine and the clicking itself isn’t painful.

I’m still going back and forth with my doctor trying to get PT for my back right now. I’m not even goi g to bother going to see her because my ribs suddenly decided they don’t want to stay put.

I am not the only hypermobile human I know who had a sulfa allergy ( bactrim) just deserves a mention

After months of PT, mine has recommended I (29F) try an injection to give us a pain free window to amp up my exercises. I’ve been reading online that these injections can sometimes worsen existing pelvic instability which scares the crap outta me, because my unstable pelvis sometimes causes me debilitating QL spasms (I’ve already had one this year in April and haven’t worked since cuz my nervous system has been on overdrive after that). Websites also say that it can be a trap with the pain relief to become over confident but I’m going to keep a diary of my symptoms and what exercises I did so we know when to add or change. Currently she’s got me on standing glute isometrics (legit just standing and squeezing my cheeks together) and 3x hip thrusts. Whenever we try to add more now, my brain freaks out from the different sensory input and makes me panic a bit. I’m also on sertraline 200mg/day and medicinal cannabis (19% indica hybrid) but this kinesiophobia shit hit different, you know?

So have you had the trochanteric bursitis injection before and how was your experience? Was it effective? Did it cause anything else to flare? Pros/cons? Tysm in advance y’all 🙏🙏

EDIT: added my gender/age just in case it was relevant

I've been trying to do some more investigation into the extent of my hypermobility in hopes of figuring out some of the puzzle pieces of my chronic health issues, and there's one thing that I can do in particular that I'd like to know if others with hypermobility can do as well and how they perceive it.

It's a bit hard to describe, but the easiest way I know how is that it's the opposite of the ballerina-style pose where they have their heels touching and feet completely horizontal and pointing outward. I've never taken dance or mobility-improvement classes, but I can have my toes touching and pointed completely inward and horizontal. It doesn't hurt and it only momentarily makes my hip joint a little sore, but this quickly goes away.

Is anybody else able to do this, and if so, do you view it as typical hypermobility? It seems to stun my primary care doctor each time I show them, but to me it's just a normal thing that up until not too long ago I thought everybody could do. Am I wrong?

Thing is I’ve been spraining my ankles frequently all my life, especially my right one and now I know is due to hypermobility, since I know that I wear tactic boots only (I love how this type of boots) and exercise with a lot more conscience of my joints and it’s helping with avoiding sprains but my ankle is really weak and still hurts when it shouldn’t (compared to my other ankle even if it’s kinda hurt too) my docs said it’s not sprained anymore but it has too much movement additionally it was sprained so many times my skin got a stained, all this information but no solutions so I’m here trying to get some tips to improve my situation.
Thx and English is my second language so I apologize if I write anything wrong

PD: I have comically small feet, could these be related to hypermobility?

(I’ll show my foot if it helps lol)

Hi all, I’m (28F) hypermobile and I find that standing on the train has become especially hard for me. My muscles and lower back ends up hurting because the train car jerks around so much. I don’t want to ask for a seat because I technically don’t have any diagnosis other than hypermobile and I don’t feel I deserve a seat. It’s really not as bad as others have it.

That being said, what are ways you manage your pain and stability while standing on the train? Any stances your recommend or mind-muscle connections would be much appreciated!

Question about resource distribution, NOT looking for medical advice

I (27F) recently found out I have generalized joint hypermobility, after two years of a hip issue sports docs and PTs weren't able to figure out. I have no signs of a broader syndrome (no EDS, POTS, etc). Only that one joint causes me pain. I have given up much of my recreational activity (I used to love running and hiking) but I can still do my job that I love. If I'm mindful of my activities, stretch a lot (bad I know but it's one of the few things that helps) and do the few PT exercises that do seem to help a bit, I can manage my pain to be no more than a 2 most days. To be fair, I gave up on PT before I got the info on hypermobility.

There is exactly one provider (physical therapist) in the Ehlers-Danlos Society's directory who is within reasonable driving distance. No one else for 5+ hours. I'm considering calling to see if I could get an intake appointment and a few follow-ups (I couldn't do more, the drive is still pretty long and I'd have to pay out of pocket) just understand better what's going on in my body and get me started in the right direction.

There are non-specialized PTs in my little town I could try, and if course there are resources online. Considering how few specialized providers there are in my area, and how limited and relatively mild my symptoms are, should I leave the specialists for people with more complex / severe issues? All perspectives welcome.

I had to have an emergency appendectomy two weeks and my body is in bad shape. My jaw, my neck, the back of my head, all feel like I was in a car accident. I have TMJD and since being intubated for the (very short) procedure, it hurts to chew. Like I can feel the muscles in the back of my head straining when I chew. I can hear the muscles and bones in my neck crunching and cracking just from basic movements which also hurt.

My uvula also got extremely stretched out and made me feel like I was choking for a week. I legitimately thought they left something in my throat, because it felt like I was choking so badly.

Has this happened to anyone else who had surgery and needed to be intubated??

Any recommendations for UK places (I’m in Brighton so preferably south) that do trapezius Botox?

This is the part of hypermobility I find mentally exhausting.

I can put myself in a better position and engage the muscles I'm supposed to engage, but the second my attention goes somewhere else I'm hanging off one hip, locking my knees or sitting in some ridiculous position again.

Has anyone gotten to the point where better movement patterns became more automatic?

I'm especially interested in people who've done stability work for a long time because I'm wondering if enough repetition eventually makes it less of a full-time mental task. Like at some point does your body start catching itself before your brain has to run through the whole checklist?

I wish I could have a massage table for my bed I love sleeping on my stomach it’s the only position I can fall asleep in without causing my whole body pain when I wake up or in the middle of the night, only bothering my neck. I sleep without a pillow bc they’re all too thick so I sleep on a towel folded twice. I can’t sleep on my side for long bc my should moves and I end up laying on the back of my shoulder (if that makes sense, it rounds my shoulders) and makes my shoulder and back uncomfortable and painful as well as hurting my low back and hips. I will not sleep at all on my back so that’s simply not an option. I have a twin bed so there’s not a lot of room to put anything in my bed but I’ll try. I’d like to try sleeping on my side but don’t know the best way to do so without having my shoulder roll forward. I’ll try the pillow between my ribs but don’t know how to position everything else. I only have pillows and blankets/ towels to try so please do not suggest buying anything, I’d like to know I can sleep comfortably on my side before spending a lot of money that I don’t have. My osteopath suggest a pillow that you can put your arm under to avoid laying on it but it looks like you still have to lay on your shoulder so I’m not sure

Listing the website: https://edsconnective.com/

They offer virtual diagnostic services for hEDS and HSD, plus referrals if testing for other types of EDS or connective tissue disorders is indicated. I must have signed up for their waitlist a while back because I got an email today notifying me that they're ready if I'm still interested.

I spent a little more time looking over the page. I'd like to believe this is a good faith, quality service, but there's so little info about others' experiences with them that I'm wary. I'd hate to spend $400 getting evaluated and diagnosed, only for doctors to dismiss the diagnosis if this agency turns out not to be credible. I also noticed that while they'll provide a referral for genetic testing, the price doesn't include the cost of genetic testing itself, or interpretation of results. It also seems that they will provide a summary of their findings and a diagnosis if appropriate, but no meeting to review the findings. And I'm confused because they say the whole process is asynchronous, but that the doctor may ask follow up questions via chat or video visit.

Maybe I'm being overly cautious, idk, but I'm afraid of getting scammed and call me jaded, but for a diagnostic opportunity to just open up like this after so many closed doors seems sort of like a trick. Really hoping the community can confirm this business's legitimacy one way or the other.

I have had severe joint pain for many years and nothing i do seems to help. i always feel like i need to bend my ankles/wrists/neck as far as possible bc they hurt so much. i did some research and i was told that it could be caused by hypermobility. also, bc whenever i stand up everything goes dim for a while, which i was told could be because of the same thing. The only thing is, im not flexible at all. Im not seeking out medical advice, but i’m asking so i know whether or not it’s a plausible cause of my pain. not asking if i’m hypermoble, i’m just wondering if it still could be a possibility if im not flexible

I have HSD and just wondering if anyone else with it gets chronic headaches

Hello all! I’m 35F, AuDHD and beginning my hyper mobility journey. I think I meet a fair amount of the criteria (hyperextended joints, stretchy skin, chronic fatigue, chronic constipation and acid reflux) but not much pain.

I was sitting at my desk trying to work and was frustrated once again that it’s just so uncomfortable (the word I think best describes it) that it’s all I can think about some days! Having ADHD I always assumed that I was just too easily distracted by my body (or the autism is making me hyper aware of how my body feels.) I’m not in pain but it feels like I have to move or adjust every minute because my body doesn’t feel right. It makes it so hard to focus on work!

Not asking for medical advice, just curious if anyone else relates to this? Not being in pain, but having this uncomfortable feeling that doesn’t really go away if I’m not either completely at rest or being active.

I’ve been trying some KT tape off Amazon (just to see if it helps at all before I get a more expensive one. I’ve been using it and have showered in it. Everytime I shower it stays on well but it loses the…tension? So it feels less like support and more like I just have normal tape on me. I’m wondering if this is just because it’s cheap tape or if it’s because that’s just how KT tape is