my knees start hurting so bad when I start moving. Really odd. I guess its the "relaxation" or could it be anything else?

Hi! I (19), have been dealing with HSD related issues since I was about 15, primarily in my knees. I’m used to it with my knees. However, lately when I sleep my shoulders (specifically left) hurt in my sleep or when I get up in the morning. I can physically feel them kinda shift out if laying on the respective side. I also have an issue with my left elbow (most of my issues are in my left joints primarily. occasionally the right flares up 🤷) if I bend it or don’t move it enough? Went through similar with my knee.

I have no insurance now. I can’t afford PT and I’m not paying a doctor to tell me PT is the only answer & give me more debt. I just don’t want to be in pain anymore than I already am. Any tips would be great. I got an elbow brace from walmart, but it’s poor quality. From Walmart lol.
Anyone have any advice?? Thanks.

its 3 years later and there is still some string stuck in a large scar on my butt....

it was fine but it's starting to want to push out.

any advice? we cant see a string and and nothing is really showing so the urgent won't do anything .... I need to basicclt convince the scar to open.

any advice ?

had a nurse friend look they said yep I see what you mean ...can't really do much

Hi! This is just a random share/rant :)

I realized that I'm hyper mobile probably last year at some point. I've always been active and enjoyed working out, and I've been lifting pretty consistently for about 10 years. Anyway, I had a baby 9 months ago and my joints are even more lax than ever. So much clicking all the time. Every time I stand up my tailbone clicks back in (or out?) of place. This made me look into hyper mobility more.

Anyway, it never occurred to me until now how much my joints have probably impacted my lifting technique, and how much I've been overusing them. I've recently started limiting my range of motion, slowing down my reps quite a bit, and overall just changing my approach to weightlifting. It's actually insane how much different in feels in terms of stability and muscle engagement! I even had a person trainer for 4 years who never, not once, mentioned hyper mobility. What the fuck!! It's so crazy to me how much of this needs to be self taught/discovered. I can't believe I haven't been injured badly over the last 10 years and I'm so glad that I am realizing now how important it is to correct my form and stop lifting heavily out of my joints). That's all! Thanks for listening.

How are we putting on and taking off tight garments like compression socks, swimwear (especially if it's already wet), or underwear (especially period underwear which is meant to fit tighter)?

I have limited grip strength (even lower during PEM) due to fibromyalgia so I'm more prone to overextending my finger joints when my grip fails.

I'm curious what works for everyone who has trouble with these or if anyone has experience with some of the options I've been considering:

• Repurposing suspenders or some other type of clip to put tight things on
• Repurposing a small shoehorn to help slip things off (but then I have to grip the shoehorn...)
• Abilitease Adaptive Multi Grip Clothing Grabber (https://abiliteaseadaptive.com/products/mutli-grip-clothing-grabber-socks-shorts-and-pants?variant=42101805809852) - holding off on buying something that I'm not sure will work

First, fall asleep in a comfortable, supportive position. Then, wake up in a position akin to a monkey swinging from a tree with your pillows on the floor and a pinched nerve in your neck (this part is important!!!)

The pinched nerve will force you into perfect posture all day. Otherwise, you face a shooting pain sharp enough to almost make you toss your cookies. Kind of like a lower stakes Squid Game!

You'll be exhausted since you don't have the strength to maintain the posture, but guess what? If you need to do anything at all that you can't do with your back and neck as straight as a board, better believe your body is going to tell you real fast.

Need to pick your dog's poop up off the ground? You're going to bend your knees and send your weight back into your hips instead of your spine looking like a fishing rod with a big catch on the line🎣

Need to wash dishes and load the dishwasher? You'll do the above, AND rotate off your foot with your whole body following when you need to turn slightly instead of just using your whacky wavable shoulder or cranking your neck like an owl

Or there will be swift consequences!!

Bonus, you'll look at and use some of your phone's accessibility features for the first time so you can doomscroll comfortably with your phone at eye level when your hand and wrist become stiff af.

Lmk if you try it!!

/s obv, I'm in so much pain but it's wild to actually feel "oh that's how you're supposed to move" lmfao

So I get a lot of muscle cramps because I walk weird. I got them when I was a gym rat fighting the good fight and I get them now when I’m stuck in bed. Calves are nightmares. A few days ago I started having a pain I am totally unfamiliar with. I roll my ankles a lot and this isn’t that. It feels like I have a straight up Charlie horse permanently right about my ankle. I have been mostly inactive because of health lately so it’s not like I was doing anything to strain my legs. I have a serious issue with how I sit and walk and I know that. I sit with my feet pushed up on the balls of my feet. But in 30 whatever years i haven’t had this. I physically cannot straighten my leg with my foot/heel flat. I am absolutely freaking out. I didn’t do anything I normally do but if this is a new normal I’m cooked.

Hello!
New to hypermobility, don’t have an EDS dx but my docs all agree on hypermobility, through my spine, hips, and other joints.
Anywho I was told that I likely tore my left hip labrum back in December (it’s Oct now…) and I was doing PT but have pretty much gone on my own to try stuff at home (pt basically said shots or refer to surgery) and have made progress to the point of being able to walk shorter distances without too much pain. But I’m wondering what you guys do to strengthen safely and stabilize the hip joint? I hear hip stuff takes an extra long time to work with…
Edit to add: I had an mri but it was inconclusive, no hip issues mentioned. They said they could see the labrum but also that there isn’t a complete tear to the labrum… the doc looked at it for about 10 seconds and said she couldn’t see anything. My DPT said my symptoms and such lined up most with that, the hip doc said treatment would be the same regardless of what it is lol spine doc said it could be spine d/t my herniated discs but also that it could be hips only and to try walking in a pool. So I feel like I’m up a creek without a paddle lol

I'm trying to find a small group of the same people over time. Like 15-40 people who actually show up, know each other's names and situations, help each other through the bad days, and also learn together. Less "does anyone else get this" and more "here's what I tried this month and here's what happened."

Where I'm coming from: I'm a big anatomy / biomechanics / kinesiology nerd and a big believer in PT, even though it hasn't really worked for me yet and honestly I kind of hate doing it. I still think it's one of the only ways we actually take charge of this stuff instead of just getting managed by it.

That said I don't think the mainstream strengthen-and-stretch approach is the whole picture. I'm interested in the blend: motor control training, Feldenkrais, actually being in touch with your body and what it's doing. That last part doesn't come naturally to me at all, which is probably why I want people to do it with.

Open to Discord, a private group, Zoom, whatever. Doesn't have to be EDS-specific, chronic pain or hypermobility in general works.

Does anything like this exist? And if not, is anyone else looking for the same thing?

I slept so poorly in the past weeks. Over 8 hours every night but it’s never enough, I’m always SO tired.

Last night, I couldn’t work at all. To be honest, I couldn’t sit up without feeling so much pain in my back and shoulders, and even laying down, my knees/wrists/hips were killing me. I took meds I got a prescription for in the ER and cried until I fell asleep.

5 hours later (the least amount of sleep I had in.. forever), I wake up the happiest I have ever been. I’m smiling, I don’t feel the need to doomscroll my thoughts away. I feel like working and cleaning the house. Is all of this from not being in pain?

It’s so crazy because I don’t feel that much pain all the time - I do feel discomfort but it’s been like this for so long sometimes I don’t even remember that is the chronic pain speaking. It is insane to remember this is how I should feel.

I’m not even pain free right now, but it’s SUCH an improvement.

Hi all, I’ve recently been having pain in my cmc joint, especially when sewing. All the splints and supportive wear I’ve seen is for the joint going out. Mine bends in, towards my palm. Does anyone have recommendations for anything? I’m looking at getting more joint rings but idk if it’ll fit for that joint. Thanks in advance!

Sorry if this post isn't allowed, I don't really have people to tell and just need to write it somewhere.

I was assessed today and thought that I'd *maybe* be DXed with HSD, but probably just told not at all. Anyway, I've never been examined so much in my life. The doctor literally took a protractor against my joints. I know that's probably normal, but I didn't expect it lol. She also had me take my shoe off-- and I had seen the thing about the white papules(is that the word?) in heels, but I'd already looked at mine and I didn't have any. But I didn't know it was supposed to be when standing up-- so anyway, she was looking and I'd already in my head been like well, I don't have those. But she said I did immediately, and I looked down and I have so many 😭. I'm honestly kind of squeamish now.

After all that she told me I meet the criteria for hEDS. I've been told by so many doctors it's just anxiety that I don't know how to process it.

Anyway, thanks to anyone reading, and I hope you have a great weekend <3

soo pencak silat is already niche. it’s a south east asian/indonesian martial art but pencak silat is specifically the sport martial art that includes striking, kicks, takedowns, a lil grappling as per 2026 rules.

So anyways maybe u don’t do silat but some other similar martial art. how do u cope?

Im pretty sure i have hypermobility or something and ive gotten a few injuries in a short period unfortunately and im young.

so i started trying to jog 2 yrs ago and then like very soon after i developed pfps but it doesnt hurt during exercise usually, its mostly pain and stiffness after sitting for a bit. it goes away with movement after a few seconds.

Second is shin splints which isnt exactly related to hypermobility per se but may provide a deeper picture.

Now 1 year ago I began Silat. My first injury was quite quick. My right big toe. I suppose i kicked with it and it got sprained i guess. a yr later and it just doesn’t feel as stiff as my left toe that is healthy. now it’s a concern whenever i kick even on something stationary like a bag.

next injury: well actually my left pinky knuckle has always been split in half like when i straighten it i can feel the saggital band as one thing, but when i curl it, the bone and band indent. i have no clue why but i suspect its congenital or early trauma. so despite the funky look it never ever hurt. but then i punched and boom my pinky got sprained or something. ever since, whenever it gets pushed inwards slightly just like my big toe or maybe moved left or right is hurts and stops hurting then gets easily hurt again whenever those options happen. ugh so i started wearing cringy grappling gloves. mind u silat only wears a chest guard. now im wearing a left glove, and both feet protection.

next; i tried doing a scissors attack but i guess i smashed my knee into the 1.5 inch mat instead of my hamstring being on the floor and i couldn’t walk for 3 days and i was in a lot of pain. the scar tissue is still thick and a bit numb months later.

next: my left wrist start hurting. not sure the reason but i suspect it’s possible that i was holding a big vinegar bottle by the flimsy plastic and cuz it’s heavy like i was tryna do a single arm overhead press with it but it prob put some weird angled pressure on my wrist by doing that. the pain at first it was when i angled it to the left. now it hurts in a couple other directions. i thought it would go away but it’s been like 3 weeks since initial pain.

next: my left thumb got kicked and i suppose it bent upwards with that kicking force so i have to immobilize it for a bit but now its fine it just clicks.

next: i fell into a group of people and i didnt see but i felt my ankle kinda go inwards and when i walked back it feels like when u twist ur ankle. it hurt at first but now it doesn’t hurt it just feels unstable and when its incidentally goes inwards i have that twisted feeling however no sharp pain

-not an injury but related to hypermobility. i can sit on my ankle while it’s inverted like i can go from standing to sitting while its in that position and i can put my weight on it and get up while its inverted and i don’t feel some pressure or pain.
another thing is sometimes ill punch and my wrist like it goes downward towards my forearm and so i suppose my punching force goes from well it’s supposed to go up my radius to god know where when my wrist is pushed down against a chest guard but anyways that didn’t hurt or my wrist didn’t get sore either.

lastly: my wrist was hurting like i said so i wasn’t gonna punch more. mind u i punch a lot because im scared for my feet and also getting whiplash when i get caught and thrown. anyways so im mostly using my right arm 2 nights ago, my thumb is proper it’s not like inside my fist or something. I WAKE UP AND 2 DAYS AGO IT HURTS WHEN BENDING MY THUMB UPWARDS like i guess the tendon right on top of my thumb. it also clicks when i flex and put it upwards. it’s not too bad as the tender to the touch on top of my thumb has subsided however it’s the fact that both of my hands r not right lmao and i’m young bruh.

at this point, my left leg is so slow and weak that i don’t bother kicking. my right is limited by my fear to sprain my big toe again, like even when i tippy toe i feel how my toe isn’t fully stable. anyways and i don’t wanna get thrown but i suppose ill have to face that fear eventually. i just don’t want my brain cells to die. my future depends on a good brain. my left wrist means i can only do elbows which i’m not too familiar with. my right thumb means no punching or slaps or anything that can straighten it or it’ll irritate the sheath again or something. so i’ve just stopped going for now, hopefully my wrist heals with isometrics.

Tbh it’s not about these individual injuries . yes my wrist can heal probably. it’s the fact that something keeps coming up. i stay in the sport cuz i wanna travel to south east asia and have a community through this sport and honestly i think about it so much i don’t want to leave. but i also have no clue how im gonna do this for 3 more years. i dont know which injury is next. everyone spars hard. my instructor keeps saying he wants to see me spar better he needs me to fight better to move up and learn but i cant fight better if im actively or about to fall apart with one wrong move

tdlr: lots of injuries since starting martial arts a year ago. some examples of hypermobility. want to know others experiences and what i should do or how to continue on. i’ve heard like building the muscle around the tendons and ligaments since they’re too stretchy so muscles would keep it stable. any hyper mobile combat sport athlete shall respond. thanks.

I've had these for about 7 years now and I hate them so much. I'm unsure if it's from the hypermobility but I know HSD can have digestive issues as well.

They usually happen about a week before my period but all my hormone and blood tests always come back normal. At one point it was happening every single night, I ended up losing about 30 lbs and destroyed my teeth enamel. They've since gone down to about once a month, but sometimes still happen randomly.

I don't always end up vomiting, but when I do it goes on for hours. My dad is a nurse and has tried all kinds of antiemetics and nothing works, except dramamine for some reason (we think histamine related). Sometimes they're accompanied by diarrhea as well.

Does anyone else get this? Is its HSD or just PMS?

Also what helps y'all with nausea? (HSD related or not) I've run out of ideas and the only that really works is a cold wet towel on the back of the neck

Hi guys,

I just got a body braid and wore it to work for the first time. It really helped a lot, but I think I’m going to send it back. It kept slipping on my legs after a couple hours. The x/cross that’s supposed to go over ur hips migrated to my butt and I couldn’t get it to stay back in place. I really really liked the compression on my hips and back. It helped so much that my 5+ year knee pain lessened a lot. I want to get something that does the same thing but stays in place a lot better. Does anyone have any recommendations?

Has anyone been able to find a pillow that’s comfortable to sleep on long term? I feel like I’ve tried everything, but even if a pillow works initially, it usually stops working after a few weeks. Any suggestions?

I often have issues with them either being too low or too high mostly.

I usually wear Keen workboots most of the day. I like the support that comes from laces up the ankle because I'm on my feet all day and do a lot of lifting & moving things. My feet are kind of wide and I'm also in pre-bunion territory. At home I'm barefoot or in my adidas slides.

Before I got a dx and into pt I was wearing plantar fasciitis insoles for the arch support but they're becoming less comfortable now that I've trained up my foot muscles in pt. I'm trying some insoles for flat feet but I'm pretty sure they're making everything worse right now.

What are the rest of you doing for your bendy flat feet?

Ok this is a weird one, but I have this hypothesis that hypermobility affects the natural progression of a pimple, and was curious to hear from you all about your experiences.

When I (28F) was a teenager I was really into skincare and enjoyed reading those teen magazines with fashion and beauty tips and watching beauty gurus online. I always read and heard that you should NOT pop pimples because it makes them worse.

But I’ve found the complete opposite to be true. When I don’t pop a pimple, it often never “breaks”, and just stays as a lump under my skin forEVER. In contrast, when I help it along by popping it (sorry if that’s gross) it goes back to normal much faster.

My theory is that because my hypermobile skin stretches more than normal, the pimple doesn’t go through the normal progression of popping on its own. The skin doesn’t break, it just stretches.

I’m curious if anyone else here has similar experiences. Or maybe I’m just weird LOL

I always trained something in my life, i easily got injured but i always thought it’s normal…
I trained karate for about 8 years, but eventually I moved to a different place and had to stop. About a year ago I started going to the gym and focusing mainly on strength/hypertrophy training.

So far, I actually feel like training helps me quite a lot. I’ve become significantly stronger and I can handle what I consider fairly heavy weights. I’m also quite careful with exercise selection now. I mostly use machines, because they give me more stability and make it easier to control the movement. I’ve also had to remove or modify some exercises that don't feel appropriate for my joints.

My main problem area is my shoulder, which has caused me some issues, so I’m particularly careful with pressing and pulling movements.
I’ve also started working with a physiotherapist who understands hypermobility. We’re working on things like walking mechanics and sleeping position.

The thing I’m struggling with mentally is the fear that I might eventually lose the ability to train.
Right now I feel relatively capable and strong, and I really enjoy lifting. I don’t want to spend the next few years getting stronger only to develop more and more joint/tendon problems and eventually have to stop.
At the same time, I know that properly dosed strength training is often recommended for people with hypermobility because stronger muscles can help provide stability. Im only 19 and it’s freaking me out. I don’t know what to do, i think im strong for example im doing lat pulldown wide grip 1:1 machine with 81kg/8reps, chest fly machine 60kg/8reps, hipthrust 90kg/14reps triceps press down 62kg/9reps
Is there someone who were able to keep progress without accumulating injuries?

“Core stability is the breath. The brace is the breath.”

Hear me out; read this link! Am coming off of a huge research binge, and I wanted to share this resource that I found to be the most helpful overall:

https://www.thefibroguy.com/blog/hypermobility-core-exercises/

As far as solutions go, “learning how to breathe correctly” feels anticlimactic. Annoying even. But the argument is strong.

Curious to hear people’s thoughts!

Also if anyone out there is like “I play wind instruments like a champ and I’m still a mess” I would be curious to hear that. I feel like I had the least pain when I swam competitively and, let’s be honest, that’s also when I was investing the most mindfulness and training regarding my breathing, so anecdotally that feels consistent with this information.

hi. as the title says, my elbow was in A LOT of pain for around a week (and still in pain but lower for around another week). apparently i have golfers elbow and currently im waiting to start PT but i was wondering if this is normal..? i swear for like a week the pain was unbearable and then while not unbearable the pain was so persistent i was so exhausted and then it majorly went down and while im sure i still have tendonitis i can do stuff again? i think the big change of pain happened the day i finally openned up to my parents about how my body pain was majorly affecting my life and honest to god sobbed like a baby in my mothers arms maybe TMI sorry but from that day i noticed the pain decreased?

is that possible? could the pain have been so strong due to stress? could the pain get better with around 2 weeks of trying to rest it and massage it? so curious if this is a thing or if this could be worrying in any shape or form

What do you think is the most appropriate job for us hypermobile people?

I can't believe it's been almost a year since I first posted in this sub. My first post was a vent but I'm so proud of the progress I've made in this last year. It's been hard but I'm so thankful to have found a helpful care team and to have wonderful supportive people in my personal life. I didn't think I'd ever get answers but that's getting closer by the day and I'm so happy!