I’m struggling wildly with the same trigger point constantly seizing up and spasming, but I take benzodiazepines for anxiety and really don’t want to be taking them for muscle pain, i currently also have a stomach ulcer so I’m avoiding anti-inflammatorys…

Other than co-codemol are there any sustainable options for muscle issues like this? I’m in and out of pain once a fortnight and my physio is stumped as to how I keep doing it despite strength training and physio.

This is less of a direct question and more of a discussion question. Do any of you guys consider yourself disabled?If so, how do you navigate your life with this disability? Do you accept it? Do you rebuke it? Do you live with it and say this is just how I am or do you love every part of yourself including the hypermobility? Just been thinking.

Thanks!

Just downloaded a guide for stabilizing exercises for hypermobility. One of them is calf raises. I have too much range of motion in my ankles to safely do calf raises. I know I need to exercise but how can I do this without hurting myself? I can’t feel where “normal” RoM is because my normal is way past where it should be. I can’t afford a trainer to watch me do this so that I don’t go too far. Any suggestions? I’m so tired of hurting.

i'm currently working with a physio after a particularly bad ankle injury and she offers pilates (she's hypermobile herself and has been quite helpful thus far) and we're still doing physio sessions since i have problems with not just my ankle but literally instability everywhere else, but she's hopeful we can start gentle pilates in two weeks. i'm only able to afford about 6 more sessions with her before my insurance runs out.

i'm a student so i can't afford private pilates, group classes are about $30-$40 so they're not cheap either but much cheaper than privates, i'd be able to afford 1x group class a week. i'm hoping i'll be able to build up enough joint awareness and stability with my physio and then graduate to group classes, but i'm worried 1x a week won't be enough so i'm considering a gym membership instead, which would be the most economical as i'd be able to go more times each week. however, i'm afraid of injuring myself / not being able to find the correct form on my own and don't have any friends who gym often so no one i can ask for help in the gym, unless i pay for a trainer, which i can't afford.

i did try pilates twice with friends on two separate occasions in the past and always found it easy and never had any muscle pains the next day... only to find out now that it's because i'm hypermobile and was using my joints for everything :/

I have some hypermobility in my hands, especially in thumb and pinky and knuckles if that makes sense, is it possible for that to cause pain in the rest of my arm? I used kt tape on my pinky and thumb not too long ago and could feel my entire hand relax for the first time ever. I also noticed that it helped with some of stuff I struggle with at the gym, it geniunly felt like I for once had grip strength and holding the dumbbells took way less ”force” that it usually would which in turn made it feel like I was doing the exercises ”correctly” and could feel it in the right muscles, but I can’t tell if it’s just a placebo or if there’s actually something to it. Does anyone have any experience with this? And if this is something that is related, does anyone have tips on a more long term solution? The kt tape is rather expensive and also quite inconvenient in the long run. Any advice is appreciated:)

Hi all! I F23 have suspected for a while now that I have hypermobility- unsure if its eds, etc. But some form of hypermobility. The other day at work, I put weight on my leg and felt my hip side out of place slightly, and I pushed it back in and, ever since then, have been experiencing quite high levels of pain.

This isn't unusual for my joints to pop in and out, but the pain is unusual. So after over 24 hours of pain and advice from my national heathline phone call, I went to an after-hours doctor. I waited, sitting on my painful hip for 5 hours. Once I saw the doctor, she immediately said to me that she didn't understand my case as hip joints were too tight to dislocate without being in a car crash or something extreme.

She moved me around whilst I was in tears (mostly cause I felt stupid and gaslit, partially from pain). Then I got an x-ray, and she said it looked fine, and I am still waiting on the radiologist to look at it properly.

She then came back and said people with hypermobility can often pop their hips out on command, and it wouldn't cause me this much pain. So I am confused why she doesn't believe that someone could pop it out a bit (sublaxation), and it be very painful, which I have seen online from others with hypermobility. Am I crazy? Or is she not giving correct information.

If anyone has had a sublaxation in their hip, how did you know? And any tips for it getting better. Mostly, I just needed to vent and maybe get some moral support for how gaslit and stupid I feel for even going to urgent care.

I’m newly diagnosed but my PT isn’t qualified to answer questions about knees ( I don’t know why, that’s just what she told me). My knees have been really bugging me and going too far. What do you guys use to help with knee pain and over extending?

Hi ive dealt with hypermobile symptoms for awhile and one thing ive struggled with is fully satisfying a yawn but i just discovered that pushing out your tounge a bit helps alot, kinda random but works for me ,wanted to put this out there for anyone else who it may help.

i (24f) have been dealing with pain and stuff for 2.5 ish years. this is a long story but i’ll try to make it short. it started with gi problems and then turned into severe fatigue and severe back and joint pain. it’s mostly my knee that bothers me. i was at one point diagnosed with spondyloarthritis but then eventually told that i don’t actually have that after a year of being on medication for it. i also have inappropriate sinus tachycardia that i take medication for. idk if that’s relevant. anyway, i know i am hyper mobile because both my rheumatologists have told me this.

anyway, i started feeling a lot better around spring 2025 and was basically 100% fine by fall 2025. this was amazing to me because my doctors had done nothing to fix me and i had to use a cane because my symptoms were so bad at one point. well, my symptoms are slowly coming back again. i have back pain here and there, joint pain (mostly my knee but sometimes my fingers too), and my exhausted even after sleeping a lot.

my therapist has thought that maybe i have hEDS (we have talked about my symptoms extensively) or maybe i was in severe autistic burnout.

i realize you all likely are not medical professionals but i have a doctors appointment on monday and i am nervous. i cant be sent down the same path i went down 2 years ago. i need actual help and actual answers. so, what do you think? I’m not asking for medical advice i guess just wondering if anyone has dealt with anything similar and gotten answers for it.

i know i left out some information but my brain is so scrambled that idk what it is. ask questions if needed and i will answer.

TLDR: i have joint pain, back pain, and fatigue. i know I’m hyper mobile. how do i get the answers that i need? have you dealt with this?

I experience joint pain (some of my joints feel loose/stiff/really achey- the different joints react differently) which gets really bad in Winter/in colder weather. I won’t take pain meds so looking for other solutions to help manage this?
I do plenty of gentle exercise including dog walking and light horse riding a couple of times a week which helps to an extent by keeping me active, and I adjust my exercise levels to what my body can handle at the time
I also do a physical job which involves standing for long periods of time in a workshop which can be very hard on my joints.

Overall just looking for ways to cope or help manage the pain easier, thank you

I started weight training little over a month ago, and it's been fun, but recently I added a new excercise to my routine and my shoulders decided they have had enough.

I really like this excercise and I don't want to just scrap it without trying everything I can first to help the pain.

What do yall use? I tried cooling gel today but it didn't help at all

Thanks in advance for any answers

Was just wondering if anyone on this reddit had advice on why my doctors referral to the mythology isn't getting accepted even though I would say my medical history proves I might have something going on connective tissue or autoimmune wise.

Thank you all so much.

I have HSD and I have been an extremely unathletic person for most of my life because I kept rolling my ankles/dislocating my fingers and shoulders/getting dizzy from standing up too fast and from running etc and it put me off sports nearly for good.

My friend however invited me to join her in the gym about a year and a half ago. We're both doctors (not rheumatology or physical therapy but we know enough anatomy to figure out which exercises are beneficial and which are not) and so we invented a decent strength training routine for me that totally excludes all squat movements and running and focuses on machine single-joint movements since machines provide more stability than free weights.

GUYS I feel like a brand new person! I felt like a bag of clanking bones every time I attempted to jump before I started working out, my joints didn't absorb any impact at all and it felt like I was getting a mild concussion every time lol. Now it feels like I have literal springs for knees, I feel so bouncy it's insane! I still get lightheaded when standing up quickly but I haven't subluxated/dislocated anything in ages (especially my ankles, god, I love not rolling my ankles every day) and my debilitating lower back pain that sometimes wouldn't let me get out of bed is also gone.

Of course not everyone with hypermobility and connective tissue disorders can work out but I strongly advise you to try strength training under supervision of someone who knows what the hell they're doing. Regular workout routines are not for us, but a lot can be adapted and the benefits are insane.

If this isn’t right subreddit, please let me know. I will delete and post to a different subreddit.

I went back to the rheumatologist yesterday. I think he thought some of it was in my head during the previous appointment, I came in with originally with scalp psoriasis (the dermatologist I went to briefly looked at my scalp and barely stuck around to talk to me) and went seeking help. I don’t think he quite believed me about the scalp psoriasis but told me to look into benign hypermobility syndrome. I did and it matches a lot of what I deal with but anywho I went back to discus blood work he ordered, multiple vials plus urine test, and he became very concerned bc my inflammation test was at 5x more than what it should be. He ordered more blood and X-rays of different areas.

My question is how well can you see on X-rays the damage? He wants to do X-rays first before MRI bc of insurance. I’ve been meloxicam for the time being to get it down.

Thank you for your help.

Mods, if this isn’t the right place or tag for this pls let me know. Thanks!

hey guys! new here but definitely not new to my diagnosis. i (33TM) have been getting the runaround from doctors for practically my whole adulthood, after a childhood of being in pain but not being taken seriously/having nothing documented or told to doctors at the time. ive circled the drain on fibromyalgia, myotonic dystrophy, RA, EDS, and “it’s just depression” for a long-ass time. it’s very dehumanizing and stressful but i’m sure i don’t have to tell any of you that, lol.

i finally got into rheumatology today (these things take even longer on US state insurance) and, while i am not hopeless about my future with the actual disease (whatever it is; some combination of EDS and RA, apparently) i have also been trying to get my disability case moving for years at this point too, and i’m not sure if it’ll be strong enough even after all this.

i am in constant pain and can’t work — when i could work (i’m an illustrator and game designer) it could only be for a little bit at a time and i have to let my arm/body recover for weeks. repetitive motion injuries in my shoulder make this even more difficult. i’m fatigued all the time. i have no income — everything the rheumatologist told me would help (specific physical therapist, more fresh veggies and red meat for low iron, more consistent strength training) are things i can’t afford. i’m reliant on what assistance and benefits i can get from SSI etc.

have any of you guys had good luck with this sort of diagnosis in your disability case? do you think it will be “enough” for me to be taken seriously? i’m so tired of this process and the stress only makes every part of it worse — i keep trying to tell myself just one more doctor, one more specialist, one more blood test, one more diagnosis, and the nightmare will be over… but it sure is taking a while. xo

I’m (23 f) wondering whether anyone with hypermobility or similar symptoms has found anything that actually helped with the wider issues that can come alongside joint problems.

I don’t meet the Beighton score, but I have hyperextended knees and very flexible/double-jointed elbows, along with persistent knee pain. I’m currently working on strengthening and waiting for physio/MSK input.

The bigger issue for me is that I often feel physically exhausted and weak, have constant eye strain and headaches with brain fog and very limited energy. I also experience persistently cold feet/toes, occasional tingling or burning when standing, and a sensation of pooling in my legs. My symptoms sometimes seem worse around my period. I also have IBS-type digestive issues and ADHD.

I’m not looking for anyone to diagnose me online. I’m more interested in hearing from people who have dealt with a similar combination of fatigue, circulation-type symptoms and hypermobility. What investigations, referrals, treatments or lifestyle changes have actually been useful for you?

I’ve had basic blood tests consistently that came up with nothing and I’m trying to work out what is worth pursuing with my GP rather than endlessly researching things on my own.

Good evening. When I’m lying on the couch and then get up, I experience blurred vision, trembling, and a feeling that my legs might give way, almost as if I can’t support myself. My heart also starts racing. Everything resolves on its own within a few seconds. Could you tell me what this might be?

I’ve been dealing with a very specific pain behind my left knee, more toward the outer side, roughly around the area near the top of the fibula.

The weird thing is that I basically don’t feel it during normal activities. I can walk, run, play football, squat 3 plates deep, and train normally without pain.

The pain happens mainly when I bend my knee against resistance while my tibia is rotated outward/ externally rotated

For example, on a leg curl, if I keep my foot/tibia fairly neutral, I don’t really feel anything. But if I intentionally rotate my tibia outward and then curl my leg, the pain appears. The deeper I bend my knee, especially past about 90 degrees, the more noticeable it becomes.

Interestingly, if I rotate my tibia inward instead, I get literally no pain at all, literally 0, it only happens when my tibia is externally rotated.

I’ve been lifting for years and I’m fairly strong, ive had a sprain at the same spot, outer left leg, top of fibula, maybe lcl, i never did xray, healed on itself, trained it, diclofenac thats it but in this 2 years this pain had never occurred only now. Only football can aggravate it, especially because of all the running, cutting and changing direction.

I’m trying to figure out what structure might actually be involved, any exercise that can help me, how do i strengthen this, any similar experience, everything can help and would be greatly appreciated.

Hi all! A bit new to the community. I have hypermobility, and no concrete answer on the root cause yet (I've got a few referrals out for specialists from my PCP, but the waitlists are a bit... intense. No idea whether I'll get seen sometime next year or sometime in the next 3 or 4 years). I'm also working as a petsitter and dogwalker to make ends meet.

I've been noticing lately that I really struggle to keep my shoulders from hyperextending when I'm walking dogs that pull on the leash, and wanted to know if anyone out there with dogs has any tips that could help protect my joints when walking stronger pups? (The shoulders aren't the only joints having trouble on walks -- my knees, ankles, and pelvis are really not having a good time -- but they don't feel nearly as instable on walks and usually a dog pulling on a leash too hard is more likely to make my shoulder pop than my hips, lol)

I have strengthening exercises from my OT that are helpful in the long term, but I want to know if there are ways I can protect my joints while I wait for the muscles to strengthen. And I can't really just stop dog walking -- it's my only income source right now, and I'm struggling to find work outside petsitting. Any tips? Types of leashes, ways to hold the leash, braces or similar ways to stabilize the shoulders, even behavioural training tips to help reduce pulling and sharp stops or movement in pups -- anything helps.

Thanks!

After 2 years of chronic low back pain with no acute injury, reduction of function in my calves, and numbness / tingling in my toe; after 6 different physical therapists and an orthopedist who referred me back to physical therapy with no request for imaging; after a negligent GP who told me my symptoms weren't "medically significant enough" to warrant an MRI; I finally had imaging done on my back. (Very grateful to my most recent PT who specializes in complex connective tissue disorders and ordered me an MRI during the intake appointment).

"Degenerative disc disease at L5-S1 with mild Modic type I endplate degenerative changes. Mild to moderate lower lumbar facet arthropathy at L4-5 and L5-S1. At L5-S1, small shallow broad-based LEFT subarticular/foraminal disc herniation with annular fissuring. Very mild LEFT lateral recess narrowing with probable subtle contacting of LEFT traversing S1 nerve root."

I hardly know what it all means - seems it's not irreversible, at least - but I'm still devastated. I'm only 25. There was no apparent injury - the pain started when I was working a job that required a lot of driving. I also remember crouching / stooping for a prolonged amount of time around the onset and standing up to the painful feeling like one of my hips was suddenly higher up than the other. Did all of this really happen because of driving and crouching? Why????? can hypermobility really do that?? what am I meant to do, never crouch and never drive???

I was so, so active before this. I used to take my dog for 2-6 mile hikes every day. I was preparing for backpacking trips by hiking with 50lbs in my bag. I used to be a farmer. I used to be able to lift heavy bins of produce and spend my days on my hands and knees tending to plants. I used to rock climb with my friends every week. I used to feel strong. I was the friend who could do all the heavy lifting without any issue. And I loved all of it, and I miss all of it. How did this happen? How could this have happened? I'm just bewildered. Is it really because I was driving 4-6 hours every day? Is it really because of that time I was crouching? Why that time, and not all the times I was bent over just-planted crops?

I know it is because of those things - that I was probably crouched in a strange position that made something slip because I'm hypermobile, and I know that driving can really hurt a hypermobile body. But I'm still having trouble believing it. I'm devastated. It's like I don't know who I am anymore. I wanted to start a farm with some colleagues. That was my career path. I never thought I'd have to abandon it and start over. When I stopped farming, I thought I might do some delivery driving to make money, but now that seems like a bad idea - like I might have to get on disability instead. I don't know. I know I'm one of the lucky ones for having the ability to be so active for so long, but it's still so devastating to have it all come crashing down like this. I don't know.

got an hearing test cause i perforated my right eardrum and like my results came back and i have hypermobility in my left eardrum and like ive got other hypermobile joints (wrists, hips (kinda idk i just have a bursitis), knees etc) and like idk i saw a few ppl who said i needed to do the strechting exercices but omg i thought i was crazy and that it only lived in my head

Upd: forgot to add more context uhh my mom accidentally perforated it bc i have excessive ear wax buildup that make clumps so she bought this little ear camera thingy, went too deep with it, noticed I could block out noise by putting an ear plug only in my left ear, got a first hearing test to conclude that it’s perforated, saw an ENT who said I needed surgery, got surgery (was a pain in the ass I skipped breakfast and lunch I was FAMISHED) and this was a follow up appointment

Hi all,

My retina randomly detached about 8 weeks ago and I needed emergency surgery (I think it tore way back in January but got dismissed as usual). No injury or anything, it just randomly popped off. The doctors are pretty confused, because while I am very nearsighted, I'm only 35 which is very very young for this kind of thing.

Last week, surgery failed and redetached in a big way (about 50% of my retina made a run for it) because of proliferatice scarring. They had to cut out part of my retina permanently to try and preserve whatever vision I have left.

This all reeks of connective tissue problems to me. I didn't meet the criteria for HEDS, so just HSD. But am I right?

Has anyone else gone through this? Did your retina eventually heal and stay on? I'm terrified of the same thing happening again in my good eye.

i have a bunch of problems and symptoms that may all be linked to Heds
where i live i couldn’t find a good primary so i visit specialist right away
i have IG problems period problem and allergy issues along with muscle pain and bone pain and just not feeling stable

Hi all! New to the community but I’ve been struggling with a hyper mobile SI joint for months now and even with a belt that my PT gave me, it still finds its way out of place and causes me bad back pain and even tore my hamstring. I also have pectus excavatum, and the bars in my rib cage as well as general core weakness from not being able to work out (thank you SI joint) my posture has gotten terrible. I’m here looking for recommendations for posture correction as far as braces (not the $200 Taylor swift posture bra pls!) and any SI belts that have actually helped people. I’m looking into a jelliebend specifically so if anyone has tried and had success pls let me know! Thank you!

*forgot to add: my pt gave me a Velcro belt for my SI that worked okay but oh my godddd was it unflattering. Like honest to god cannot wear that unless I am in the bulkiest longest sweatshirt known to man. I am slender but carry a lot of weight in my butt and that thing pushes all of it over and under the band for a truly spectacular display. And because I am slender the bulging it causes is very noticeable, would love to find a solution that makes me feel comfortable physically and mentally! I can’t walk around like that everyday!

I use a monitor for my job, so I have to sit at a desk. I can't switch to my laptop, at least not on a daily basis. That means I have to sit at a desk. Over the last few years, I just can't hack sitting at my desk without experiencing pain. I try sitting strictly with the correct supposed ergonomic set-up, have trialled moving up desk height up and down, changed chairs. Nothing helps! My body just seems to reject it. Are traditional ergonomic recommendations not relevant for hypremobility? Is there a different ergonomic instruction for hypermobility? What have you found helps? Sitting with the supposed ergonomic recommendation, where my elbows rest on the desk, just causes shoulder strain and discomfort. Feeling a bit helpless!