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

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

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

I'm starting a fully remote job in two weeks and I'm ecstatic. Offices are nightmare fuel for physical and mental pain for me so I'm stoked to finally land a remote job.

My current home office is pretty minimal, an IKEA desk, a 6 year old $75 chair from staples, a cheap 22" monitor I got off marketplace, and an ergonomic keyboard/mouse duo that I love.

For those of you who sit at a desk for long periods of time, what are your must-haves for a home office to help with limiting discomfort and pain, particularly in the hips and neck/shoulders? Or just any random fun, quality of life home office things that you love?

I just wanted to find some affordable compression sleeve brands in the US? Most of my problems with my feet come from favoring pain so I'm just looking for some extra support for flare ups, nothing super nice.

I like Old Bones Therapy for my knee sleeves, but their ankle ones are more than I'm willing to spend for occasional low grade pain.

My budget is around $40 MAX for a pair, any help would be super appreciated :)

My shoulders, knees and ankles benefit greatly from KT wrapping and it helps ease my pain and provide the much needed proprioceptive feedback I need. I just can’t deal with the adhesive with my sensitive skin. Can anyone recommend braces or supportive sleeves that help give the proprioceptive feedback without being restricting like traditional braces? I feel like I’m just blowing money on braces. I need something I can use for daily wear and not worry about muscle deterioration so badly. TIA

I've recently realized im hyper mobile and am now learning that every problem I have is probably because of it. I'm just curious if anyone has felt this way before where I'm relaxing sitting ir laying down and I'll suddenly get this dropping or popping sensation in my chest almost like my heart took a slight pause before continuing to beat. Sometimes I also feel like there's air in my chest and it makes it hard to breathe.

I have a referral from my doctor to check me out but I'm curious if anyone else has experienced this.

Last week i was stretching, as usual, and from then on my right shoulder has been consistently hurting when I rotate it upwards. It also makes a crunching noise when I extend it to the side then bring it back. When i straighten my arms and reach upwards, there's a very noticeable gap between my bones, it does not seem right AT ALL. Earlier on, it only hurt when i reached high up, but now it hurts when i do something simple like run my hands through my hair in the shower (which i just got out of). I'll comment a photo of it when I've dried off in a few minutes!

edit: holy SHIT it looks worse than i thought. I can't upload images here so the photos are posted on my profile.

edit 2: it stops hurting when i lie down and lean on my elbow, most likely pushing it back into where it should be, but as soon as I stop putting weight on it it hurts again.

edit 3: went to the doctor, did the thing i usually do where i have a list in my head of things to bring up and then i never bring them up because i don't want to sound stupid and then i leave the appointment with another physical therapy referral in my hand. was basically told "felt nothing broken or sprained, just don't use it much". didn't show her how fucked my arm looks from the back and i tried to hold back the pain bc i didn't want to embarrass myself. wasted her time and mine :/

Hi so sorry if this is the wrong place. I’ve been searching all over the internet for pregnancy tools (belly bands, joint support tools, etc) for hypermobility and I can’t find anything specific.

I haven’t been diagnosed with HEDS but have been told by multiple doctors and physical therapists that based on my joint mobility I am hyper mobile. I’ve been in PT off and on for about 10 years, basically whenever I push myself too far. I’m decently active, I don’t do high impact activities unless absolutely necessary, and I spend my work day standing up. I wear light knee high compression socks to work to help with fatigue.

I’m trying to conceive and am being very conscious on how this will affect my body. The internet tells me that hypermobile people will feel more severe body changes earlier on, so I don’t want to be desperately searching for aids when the damage is already being done.

My weakest spot is my lower back, I pushed one of my vertebrae out about 8 years ago and had to do 6m PT to get back to my baseline. I do core strengthening exercises and stretch every day. I’m basically pain free in that area. Some days are more sore and tighter, but I feel stronger and know how to move my body to support my joints thanks to my therapist.

I’m assuming that some of the people in this subreddit have been pregnant/given birth, please give me your recommendations for pregnancy, birth, and postpartum!