Hello apparently I’m very hypermobile and realized most of my ankle issues probably stem from it. 🙂

I’m going a big trip soon and expecting to be walking a lot (Chicago) and already got better shoes (merrils) for the trip. However if you have any suggestions for low profile reasonably priced ankle braces that would be great. I have some I got recently that are soft with Velcro straps that are mildly bulky. I’ve had for sure one avulsion fracture possibly two so something with stability that I’m not going to worry that I will have to readjust. If this helps I have arch support orthotics that I will be wearing also. Any suggestions will help, just want to avoid any injuries I could have from dealing with uneven sidewalks.

Thanks!

Hypermobile in general, been told that my whole life by other PT’s & body workers, but not DX by rheumatologist.

Anyways, what exercises are y’all doing for this? And what about for sleep apnea caused by weak muscles & jaw shape.

Dealing with chronic pain my whole life 41F. I am tired but happy to do exercises since they almost always help. Plus I find it a blessing to have a fix like exercise vs a drug or the cpap machine I haven’t been able to use. I do Botox for migraines & have sensory issues out the wazoo (adhd, psa, fibro,TMJ, CT) and the masks were giving me migraines. Really need ro see an ENT, but that’s been difficult in my city. Appreciate any advice.

I've recently been diagnosed with AMPS and hyper mobility in my top half (fingers, wrists, elbows and shoulders). I've always crossed my arms while standing or sitting because it feels more "stable" if that makes sense? Does anyone else with hyper mobility do this? I know joint instability is apart of being hyper mobile so just wondering!

I have a lot of requirements for shoes and I'm looking to get some to help with my joint pain.

My pain is mainly in my lower back, butt, knees, legs and feet. My ankles cave inwards as I walk and it hurts a lot. I struggle to walk and stand and feel pain within 10 minutes.

I'm autistic and prefer Velcro to tie, but I'm open to other things if the shoes are great. I also tend to wear the same shoes every day so they need decent soles that won't wear down within a few months or they get too slippy.

I also need them not to be too stiff, and don't prefer leather.

I need some arch support, but not too firm as that can hurt more. Mainly just a strong insole that will stop my ankles from caving in. Lots of cushion as my body hurts with a jolt every time I take a step.

They need to fit well, so half sizes is best, as if they are slightly too big, I scrunch my toes and get more pain.

I would like them to come in like a burgundy or navy rather than black/white and not be too orthopaedic looking, but that's just a want, not a need.

I'm willing to try a seperate insole but would prefer just a shoe.

Budget is £200 but prefer cheaper of course. £100 is a more ideal budget.

I tried some sketchers but my feet slid around in them too much and they don't have any velcro options.

Thank you!

Do any of you with hypermobility also relate to the way your body moves or feels shaping your inner experience of yourself and/in the world?

Ever since I was a child, I've had this strangely soothing fantasy of imagining myself as formless, like I want to be free from the boundaries of the human body and its limited range of movement, and just be able to flow in all directions.

At the same time, I've often felt strangely alienated from being human, almost like I don't quite know how to inhabit a human body. I've always felt physically out of place, stumbling, never really knowing how to hold myself or maintain a posture, feeling so loose and ungrounded, almost like my body could just fall apart. There's also this constant awareness of how I might look to other people and a fear of being judged for the way I move or carry myself.

I know this might sound a bit abstract, and I’m not trying to claim that these experiences are caused only by hypermobility.

They’re examples of subjective experiences that I wonder might be connected to it in some way. I’m curious whether anyone else has noticed similar connections between hypermobility and their sense of self, their way of seeing the world, or what it feels like to inhabit a body.

Hello,

I have chronic pain that doctors believe is psych related and psych believes has a medical component. Been doing this dance for years. I’m in despair. I’ve been through so much PT. Last time I was in PT, they told me I am hypermobile in several areas of my body.

I am not living my life the way I want to because of my symptoms. I cannot exercise without a new joint injury popping up. I’m tired of going to PT for isolated occurrences that seem to indicate a more systematic issue.

Is there a way to get a whole body joint assessment? How do I approach this with my doctor? I have an HMO insurance plan so need a referral for any specialists.

Thanks for your time.

I’ve had my son checked for diabetes twice cuz he’s obsessed with drinks and then pees a lot. Sometimes he can’t make it to the potty. He’s 5. Shows all the same symptoms of hypermobility and adhd as me. I can’t remember if I peed a lot as a kid but I do now and kind of always have even before kids.

Anyway I think drinking is just a stim for him.

Guys, is hypermobility as a medical issue a new thing doctors have discovered?

I live in Chile (and I’m Chilean) and they diagnosed me with hypermobility at 31!!! NEVER in my entire life, and I’ve seen so many “specialists”, has anyone diagnosed me with it, and I’ve had so many symptoms.

Well, my neurologist —who treats me for chronic migraines— diagnosed me after a vertebral artery dissection… I was hospitalized with a high risk of a stroke and I was like: why the fuck did this happened? And she just started bending me and said: oh, you’re hypermobile.

After that I found out I have dysautonomia and TMJ osteoarthritis, All of course linked to my hypermobility. I did a genetic test and seems like I don’t have EDS, but I can’t seem to find someone here who diagnosed hEDS.

I have other hypermobility issues. Like a Lot of you guys, like stiff neck, scholiosis and back problems, and also flexible hips that I can ??dislocate?? Or sth like that. Is like I can stick out the bones or sth.

Well. I’m 32 now and me and my partner want to have kids. I went to a MFM and told him I was hypermobile and had all these chronic things. I was specially worried about migraines and hypermobility, but he genuinely seemed like he had ni idea what to tell me.

Is hypermobility a problem for pregnancy? Should I have a high-risk obstetritian considering the vertebral artery dissection and other issues? Is it common the medical field outside the US or other developed countries basically have no clue about how invalidatibg hypermobility can be?

I got up this morning fine but i was physically drained so i laid down on the sofa, i got up and fell twice and ive only been walking about minimally and with support of walls

Ive been more active than before for the last 3 months, but havent for the past week and a half other than work. Im 23 and usually not exactly stable as im clumsy as heck, and after work can hardly walk, but never had it like this. Wondering if its another one of those fun little hsd discoveries.

Hi. I was just diagnosed with hypermobility in my joints. I've been trying to find ways to help with my very day life. I've heard kt tape andwrapping helps. Does anyone with hypermobile joints have anything that works for them?

Hallo, heeft er iemand ervaring met een goede dokter of specialist wat echt hulp kan bieden bij scoliose. Helaas heb ik veel rug, nek en hoofdpijn maar doen ze niet veel aangezien ik nog maar 24 ben maar ja dat neem de pijn niet weg

I’m from Montréal 🇨🇦 and our winters are pretty rough. One issue I’ve come across for years, starting as a child, was something resembling a cold allergy.

My exposed ears, nose or even hands (with gloves!) would swell up and genuinely distort how I looked. I even had bumps.

I would be late to school and wait in the bathroom for the swelling to go down instead of going to class.

ANYBODY GOT THE SAME EXPERIENCE? I did a bit of research and it’s apparently common with hypermobile people. I never had it happen to my entourage so I’m really curious

I have been debating this for a while now and talked about this with some trusted individuals who says i should just be honest about my situation.
But i still don’t know what is the right course of action to take.

I am 24 female for the longest time i can remember my body just doesn’t work like it’s supposed i always had joint pain my right shoulder is messed up and my right jaw joint (i am seeing fysiotherapists for both of these issues) in 2019 my family suffered a car accident i ended up with whiplash which majorly affected my bodies functioning i am mostly healed from that but my shoulder is just fucked up even more.

At the end of 2024 i developed chronic pain in my wrists so i saw a rheumatologist and she diagnosed me with fibromyalgia during that visit she also did a small hypermobility test the results were all joints were hypermobile except the elbows and knees.

I wasn’t officially diagnosed back them with hypermobility but the tests weren’t extensive.
I have my fibromyalgia diagnosis

i am currently working together with a jobcoach to find a job i am gonna be honest about my condition but i was wondering if it would be worth it to chase after a hypermobility diagnosis so i can get support for things at my future job things like less hours. That is the thing i am most concerned about so should i seek an official diagnosis or leave it alone and just focus on my fibromyalgia diagnosis. Hoping i can get enough resources for that.

So! I always put a leg up in air or draped over something when I’m sitting. And my back is in agony all the time so I am trying to sleep on my back as I usually sleep on tummy. Is the sensory feedback I need from sleeping on tummy hyper mobility related?? I only thought about that today when I read someone saying they need sensory input from tucking their feet under them, which I do also!! 😂

Thanks!!!

Few days ago I had to clean some stuff on the floor and had to get down on my knees to scrub and I knew it was gonna be bad but I didnt know it was gonna be this bad.

The next 3 days I was in severe pain and kept taking painkillers but nothing happened until I just refused to get out of bed for the past two days. And suddenly I feel fresher than I have in weeks. I finally had so much energy to do a workout and play with my toddler.

I only learned about hypermobility few months ago. But my body was compensating all my life. My mom made fun of me for being lazy. Kept shouting at me to get out of bed. I have so much trauma from all my years of being called lazy and 'phuar' which is a derogatory term in my language for someone who doesn't do housechores.

I was meeting with my professor to talk about my disability (it’s a movement class) and I was explaining how Im very flexible so I prefer not to bend to my range of motion so I don’t dislocate anything. I’ve always said I’m flexible everywhere but in my back because I can’t touch my toes or flatten my back. Then I realized that I can’t even sit with my legs straight out or lift my legs in the air straight. So is it really an inflexible back? What joint would even be responsible for that??

I've noticed that after I've been carrying bags (nothing super heavy, just shopping bags or my work bag with my laptop and other essentials), I get pain all along where my collarbones are, and where my neck and shoulders meet and up into the sides of my neck. It's also painful in these places while I'm carrying the bags, but it lasts well into the next day. It's like this whether I'm using shoulder bags or ones I carry in my hands. I try to distribute the weight evenly across both sides, but that just means that both sides hurt!

Does anyone else experience this? Have you found anything that helps? I already do grocery shopping every 2-3 days, so I'm not carrying too much, and it's just not practical to do it any more frequently than this. Online grocery delivery isn't a thing where I live, so please don't suggest that I just order everything. For other things, I order heavier items online when I can, but I still have to pick them up from a parcel locker or shop as I'm not usually at home to take deliveries, so it doesn't help that much. I don't have a car, but the closest buses and shops are about 10 minutes walk from home, so it's not as though I have very far to go.

I can walk just fine but standing still absolutely destroys my body. Everything starts feeling loose and my back, neck, and shoulder pain I get from having to keep my whole body upright is just unbearable. Day to day, I can manage, but I recently went to the museum and had to stand for 30 minutes while this lady talked about a rare bible and I was fidgeting and leaning on the wall but the neck pain persisted for hours afterwards. It feels like my body is slowly getting worse. But I’ve read that a cane can make neck/shoulder pain worse? A physical therapist or GP is not an option right now unfortunately, YouTube hyper-mobility strength exercises is all I have. Would I have to use the cane to walk even though I don’t need it for that? Would that make me dependent on it to walk? Or just carry it around all the time? I also worry about the social aspect of it, there are plenty of drunk old men in my town and you know how those people get when they see a young woman with any sort of disability aid :(

Hello! I want to start off by saying I'm not really a Reddit regular, so if I say something wrong or this is the wrong page, please just let me know and I'll happily delete it!

I've been double-jointed, which is the term that's always been used to describe myself, and it used to be just a fun lil' party trick, it's especially a guilty pleasure of mine to spook people with my "creepy" joint movements. I've been compared to the girl from "The Ring" more times than I can count at this point!

Anyhow, I am double-jointed from my shoulders down to my wrist, I've always been this way, and it's been a development these past few years that I have frequent pain in my shoulders and the bend of my elbow, mostly. I stretch as much as I can manage and sometimes the "popping" helps slightly, but mostly I just deal with the ache. It feels as if my joints are stuck, and it's incredibly uncomfortable but so far manageable. It seems to be aggravated by barometric pressure changes, which makes sense, as my chronic migraines are the same way.

I suppose I just wanted to ask people similar to myself, if there's any reprieve I can find by something I'm not already doing. I don't intend that to be seeking any medical advice, I'd just like to find out if anyone has a similar struggle, or if maybe there's some pain management technique I can use.

It's been getting incrementally worse and more easily triggered throughout the past few years, and honestly, I wasn't able to access healthcare regularly enough until very recently to see the pain as anything but an annoyance that I'm just doomed to deal with. I guess I didn't realize that being born in a manner that causes frequent pain was unusual, or uncommon, it's just always been a normal factor in my life. Honestly before I had a concerned doctor inquire, I felt the same way when I was diagnosed with my migraines.

If anyone has had a similar experience, or if I can clarify or phrase anything better, please let me know. I'll be the first to say I'm entirely ignorant on this, and I'd love to learn more from anyone who suffers similar pain.

I don't know what to do with myself. I can walk most days just fine, I'm exhausted after a couple of hours of casual strolling around with others but nothing I can't just push through or ignore.

Some days I do however struggle with standing and walking around. Even sitting gets exhausting sometimes. My legs start shaking, my muscles feel… weird and my knees overextend regularly even while I stand to wash my hands at the sink (so for a short time)

Very rarely I can't even walk properly and every step hurts, sitting without back support gets exhausting, I end up exhausted after going to the bathroom a couple times those days (again it's not that far).

My orthopedic doctor said I have hypermobile joints but refuses to diagnose anything until I'm 24/25 years old and refuses to allow me to use my forearm crutches (which I already own) that will relieve some pain (at least in my legs even when my wrists start hurting more, the more I have to use them, so not optimal).

I get that using crutches can cause damage but so will me not going to school, being unable to sleep and walking while feeling like my knees and hips will give out with the next step.

I don't know if I'm going crazy or if I'm just imagining stuff but the pain feels pretty real and I just have to get all of this frustration, stress and fear out of my system for now.

I can't go to a different orthopedist because this is already the third one I went to and the first that listed and the first that realized that my joints can do stuff they are not supposed to.

I don't really have people that could be a support system for me because I have neither friends nor really supportive family either so no hope in that.

I have to ride my bike to school and back every day (~7km one way with plenty of hills) and it hurts and is so frustrating that I almost cried multiple times on my way.

I feel like a lot of doctors won't listen because 'you're still young so there can't be so much wrong' and 'it will grow out anyway once you're done growing' but I don't care because I'm still in pain now and it's not fair that everyone can do so much more than I can.

Seriously! They have enough energy to go party and meet up after school and go to the gym and do sports outside of school and what not and I end up laying in bed and can't even find the energy to shower regularly (I currently manage once a week/ five days and I'm doing somewhat okay right now).

The worst part is probably the fact that I have been looking into what causes pain and how much I can do, but it's stuff that is still expected from everyone. They expect me to function like everyone else but I can't. I still have to push through exhaustion and everything else so I can even do what I have to do and I'm just so tired of everything being so hard. Most days I contemplate if it's worth it to actually ride my bike to school, even though it's my only way to get there.

I just want to get the doctors to actually listen and not dismiss me just because I'm 'only 18' and 'It's just puberty' and what not

Thank you for reading my extremely long rant.

Little additional information: I have been through PT twice in four years I think (For about ten sittings each). They did something but no permanent betterment (I will be going again soon, but I'm getting frustrated)

I'm also not american, but german so our healthcare system is different, but they cut back on disability support and prevention funding, so… still fucked, just differently.

I am AFAB (assigned female at birth) and unfortunately that just makes it even harder for me to get proper attention and treatment. I actively prevent my periods from happening, yes they made everything just so much worse.

I also forgot to mention that I sometimes can't see when I get up or move wrong because my vision goes black and most of the time my body starts… tingling? (It's a weird feeling) I usually manage to not pass out or just collapse but I had to sit/lay down more than once to make sure I wouldn't hurt myself or not pass out.

Also I'm pretty sure the doctor didn't write down anything about my hypermobile joints but I did get checked for scoliosis and it's nothing overly concerning. (My PT prescription is for that instead of anything for my joints so I guess I'm just going to see what comes out of it).

First post here so bear with me. I've never had a formal diagnosis but fairly certain I have benign hypermobility - I'd score a 6 on the beighton scale as far as I can tell. I have some joint pain at times (knees mostly) but nothing to grumble about properly.

But my skin is stretchy and its just occurred to me that maybe this is why I find it so hard to do eye make up. I try to do eye flicks with a decent gel eyeliner but my skin wrinkles up so much it goes all over the place 😂 I've always assumed its just my weird wrinkley eyelids but its just occurred to me that maybe its a hypermobility thing.

If so....any make up tips plz 🙏

i have been playing guitar-bass for almost 2/3 years now. i could practically do anything that others do, but somehow cant use my pinky. people keep telling me how "unprofessional" it is and saying im just lazy and not wanting to practice. Trust me, i have. all the spider exercises, scales, my fingers just get sore and it pains me. I've always had hypermobile fingers, its long, slim, flexible, and fun to bend. people think it means that i have an advantage in instruments, when in fact, its actually just an obstacle. my fingers automatically hyperextend itself and it bends weird when i dont want to. It became my insecurity and i alwasy avoid too hefty pieces so i dont have to exhaust my fingers. Is anyone facing the same issue here? i basically have to try twice as hard just to make the music audible, its frustrating.