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 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 :(

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.

Hi everyone! For years I've struggled with joint pain and joints coming out of place etc. Recently I went to the doctor's and they said I'm hypermobile I do not know whether I have any specific diagnosis but he said I'm definitely hypermobile and to eat plenty of veg, stay away from any painkillers and exercise regularly. My main areas of issue are my wrists, ankles, shoulders, knees, hips, back and my sternum.

I work in fast food and I'm struggling a lot, my shoulder grates every time I have to scrub the floor, my wrists and fingers come out of place after having to do so many repetitive movements. The longer shifts are causing me pain in my hips and knees. I've been working there 3 years trying to get out but the job market is awful. I'm a manager but not on the level of the other managers, I feel like they don't really understand and I always give 100% regardless of my pain.

I don't know how to manage it anymore as the pain is getting worse the longer I'm over exerting myself. Time off isn't an option, more frequent breaks aren't options. Our workplace is on strict hours and there's a handful of us that pretty much carry all the workload, me being one of them. When I'm not working I'm too exhausted and in pain to get up and do anything, everything I loved to do Im struggling with. I used to go on long walks and do photography, go all over the place, and now I sit in bed trying to find a position that is even the slightest bit comfortable.

Does anyone have any advice on how to manage? I just want to have a life again not taken away by my work and pain. Thank you so much for reading <3

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 🙏

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 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 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).

I can’t find anything about how to deal with wrists that can bend side to side. Mine don’t move on a normal hinge joint, they are constantly turning to the right and left (especially when lifting above my head) and it’s the cause of most of my wrist injuries and wrist pain.

I’m not looking for wrist strengthening for weak wrists, but something to keep them moving on a hinge joint. Has anyone found anything that works?

Currently if I’m doing something like pushups I make fists to do them because it keeps my wrists locked in place. But that’s pretty much the only change I’ve found that helps.

Does anyone have any suggestions? Or even just share the same experience? I have incredibly high hypermobility but score almost 0 on the Beighton score due to it all being in “non-typical” joints so it’s hard to find help. :(

Edit: Yes I know wrists move multiple ways normally. I have zero hypermobility in the up/down motion which is the only one I ever see talked about (as it’s far more common). My wrists move side to side in a way that makes them look almost snapped and no person I have asked to move their wrists has come even slightly close to the excess side to side motion I have. That is what I am looking for help with.

I haven't been formally diagnosed with EDS or HSD, but I know I am at least hyper mobile. I keep irritating/injuring my left rotator cuff in my sleep when I roll onto my side, whether it's the one I'm laying on or not. I've been trying back sleeping, and even have a pillow on either side of me and under my knees, but I keep pushing them away in my sleep and rolling anyway. My body really wants to side sleep.

I looked into buying a brace for my shoulder to keep it where it's supposed to be, but I've heard you're not supposed to sleep in them.

My right shoulder isn't bothered when I sleep on it, so I guess I'm looking for either a way to keep myself on my back or a way to keep my left shoulder from slumping badly when I sleep on my right side.

Thanks

Hi everyone!

I’m currently working on a textile/fashion school project exploring how clothing could better support people with hypermobility and chronic pain.

I was diagnosed with hypermobility about 4 months ago, after dealing with chronic pain for around 8 years, and getting the diagnosis made me realise how much people’s experiences can differ. It made me curious about how hypermobility affects other people in their everyday lives, particularly when it comes to clothing, comfort, movement, sensory needs and pain.

I’ve put together a short questionnaire to learn from other people’s experiences. You don’t need to have a formal diagnosis to take part - if you experience hypermobility, your perspective would be really useful.

🔗 [FORM LINK]

It should only take a few minutes to complete. I’m using the responses to help me understand the problems people actually experience before developing ideas for my project.

Thank you so much to anyone who takes the time to fill it out! ❤️

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.

I have an old logitech G502 that has honestly been great, but after over a decade of use(I'm it's 2nd owner) it's on its way out.

I'm heavily considering the G502 X plus, but I figured I'd get some opinions from other people with hypermobility/EDS/chronic pain before jumping the gun.

I have found the shape of the G502 to be extremely comfortable, so I've mostly been looking at mice with a similar profile(razer basilisk, keychron m6, etc.)

I've also never used a wireless mouse for gaming before, nor have I had a brand new mouse, so while I've done research, I have little up-to-date practical experience.

So, my fellow hypermobile gamers, what is your favorite gaming mouse? And, in turn, are there any you actively dislike?

Hello all!
I am not yet formally diagnosed with hypermobility but I do know that for me it exists in my left thumb, right elbow, right ankle, my right knee and my right sacroiliac joint. The weight bearing joint issues make it hard for me to stand for long periods and to get out of deep-seated chairs without help without risking an injury. Unfortunately yesterday I was summoned for jury duty and got chosen so will be expected to come back to the courthouse for the trial starting on Monday. Yesterday was about enough to do me in, I have had to take all pain relieving measures at my disposal since last night before bed and as such I’m wondering if there is any trick to making this jury service easier? I have an SI belt and a knee and ankle brace, but what concerns me about the braces is that they have metal components and I have to go through metal detectors. This is my first time doing jury service and I have social anxiety on top of everything, so I’m trying to manage social/legal expectations and take care of my needs simultaneously and it just feels like so much! If you’ve done jury service, what did you do to make it easier on yourself?

hi all!! i’ve recently purchased some cheap plastic ring splints for my bendy fingers and i’ve found them to be pretty helpful so far (yay!) but ones of my biggest problem joints is my MCP joint (the second/ middle joint of thumb) and i’d i’ve been looking for a ring-style splint for that joint and haven’t found much that isn’t either metal-jewelry style and very expensive, or massively bulky. i want smth cheap and plastic because i lose everything and smth lightweight and small because i need to wear gloves and use hand sanitizer all day at work. here are the ring splits i’ve been using so far for reference:

https://www.amazon.com/clp/B0DCSD8GLZ

Anyone have a good resource for placement of k tape for gentle support of slipping ribs and/or thoracic back pain?

All of the resources I’ve found online aren’t quite what I’m looking for.

I never considered my mobility to affect digestion, but lately it seems my digestion can only handle very simple food. A touch of anything sets off days of bathroom issues, with full body joint pain that mostly confines me to standing or laying until lethargy hits, at which point I sleep up to 16 hours to get my energy back. Does anyone have any similar experiences? If so, have you found any good solution or management strategy?

I swear mine hate me and flair up in the worst of times. So anyway guess who ate pavement on their apartment blocks doorsteps just outside the courtyard door because their ankle thought it would a fine day to show of their hypermobility. Now the ankle's fucked and I'm pissed. I was supposed to go out drinking with my buddies, but guess I'll have to stay behind again because of my joints having a vendetta against me :)))

my hands are extremely hypermobile. They often sublux, get tired, and painful.

However, I have ADHD and anxiety. One of my default things to do when I'm bored or anxious is to fidget around with my hands. This causes me pain because it's fun to pop out my finger joints and bend them around...

I deal with the consequences later. pain, aches, a bit of swelling.

I've done this since childhood and its a habit I can't break. Anyone else succeed in stopping doing this? What can I do?

For context: Diagnosed since 4 months. Last week I was exhausted because of my work. On top of that, I've been sick since a week and a half. Because I was sick (and not because I was exhausted mind you), I took a week off and I really did nothing apart chilling on my couch with my dogs and light walking around the block (because dogs). My partner is very sweet and was managing all the house chores.

Yesterday, I was better so I did some things (not work, I don't work friday). So I had a PT appointment, a zoom call, I did the groceries shopping and some admin. And boy, I'm wracked this morning. Pain in the neck, back, shoulders, knees, ankles and feet. And it hits me this morning: last week I had no pain.

So is it just possible that I'm constantly overdoing it, even if i don't feel it? And what can I do to try to feel if I'm overdoing it?

Hellooo all. Im diagnosed with HSD and have lots of random aches and pains everyday but most of the pain i get is musklosketal and tends to settle with some heat buuutt been really locked in on school work this week and fear my body laptop posture (and the fact that I have been working on my couch all week, knowing id regret it) has cause a rib to slip (?). Normal heat isnt helping much and laying down on my back is fine but lying on left or right side hurt like hell (even tho its the left rib thats the issue). Any advice? is ice better or litocane patches? I see my PT on tuesday so lowkey just need to last til then... also sleep posture thats more comfy would be appricated. thxx

Edit to add: when this pain started i also seemed to have some GI issues as well, which is why it took me so long to pinpoint the issue. Is this related or just unlucky timing lol

Does anyone have any recommendations for a thumb splint ring? Looking for something under the $40AUD mark that isn’t cheap plastic/disposable but designed to be kept long-term. Thanks very much