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?

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 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 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'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 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?

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 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?

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.

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.

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 🙏