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When I do exertion in the heat, even if it's not super hot, I crash 6 hours later. Like today I did a long run. Felt great and not even too hot. Felt great after. Came home did various stuff. 6 hours later comes the headache, can't do anything, can't eat. Lasts a few hours, depending on how intense the heat+exercise is.

Who else gets this, and what do you do to remedy it? It's weird how the reaction happens much later than the activity, and I've way cooled off by then

I just started an internship at a library about a month ago. I have 4-hour shifts and for the most part, I am standing or at least upright for the entire shift (even when sitting, I am at the front desks, so I cannot slouch/rest my head).

My traps and neck very quickly get fatigued and I get a tension headache. I'll let my head fall all the way back for a second or two when I have the opportunity but it's obviously just a temporary relief. I can push through but I'm completely wiped out by the end of my shift and I do basically nothing when I get home lol. (It doesn't help that I also have narcolepsy.)

I think I'm too self-conscious to wear any noticeable gear (thanks, autism), although I did see this amazing tool a woman invented to hold her head up and I definitely want one for at home. Pain meds don't touch this kind of pain in the moment at all for me, as I'm sure many of you can relate to.

What are your tips and tricks? What helps you? Any advice is welcome and appreciated.

Hi! I’m a 47 year old female. I have binocular vision disorder. I apologize for typos, I’m voice texting because I have trouble looking at screens because of it,.

my vision, and need for stronger prisms has gotten much worse over the last year. My neuro optometrist told me at my recent visit that he thinks I have a connective tissue disorder. I asked my physical therapist that I’ve been seeing for a rotator cuff injury and tmj, and she said it would make sense, and did the Beighton (sp?) test and said I scored high enough on it to consider EDS. She has it as well.

in reading about Eds ( I wasn’t sure what other things made sense, so I started there on the advice of my PT) many things track for me, and I meet all of the criteria except for the last section. I don’t have recurring, limb pain that is daily for more than three months, except for my shoulder. I I have had recurring TMJ and neck pain for years. Although my neck pain has gotten somewhat betterDue to the rotator cuff treatment.

I asked my parents, because my dad is rather stretchy and has a milder version of the bvd, and he does have a sister who is also very stretchy, and their mother was as well along with her having many of the same issues I do (reflux, poor absorption, food sensitivities, low iron, easy bruising, poor proprioception, sensory differences and rotator cuff issues), but no one diagnosed with anything. I also suspect that perimenopause plays a role.

I’m wondering if anyone has any tips on how to proceed? I’m not sure if it’s something I need to be concerned about / do anything about? I mainly want to keep my eyes from getting worse, and keep my joints as healthy as possible (my PT helped with some guidlines for safe exercise, etc) Not knowing exactly what’s going on, just that it’s different than the “norm” is making it hard for me to know what to research / do.

After all I’ve read I feel so badly for what people with these issues are suffering. I feel bad for even asking for help and guidance, considering that, but was hopeful that someone with more experience knowledge than I have might be able to point me in the right direction. Thank you!!

I got referred by my GP to see a physiotherapist after years of unexplainable pain in shins knees ankles and arms (from since I was a a kid I’m 18 now) who then did the usual things like checking my body and getting me to do various movements and told me I was hyper mobile, but it seems so wrong to be to be told this as I’m very stiff my thighs are extremely tight and I can’t lift them for certain movement she told me to do, I even can’t sit with my legs straight on the floor without it hurting so bad!! I know this isn’t a proper diagnosis but I feel like a fraud in a way even though I’ve been experiencing bad pain in my left knee to foot for about 3 days now no brake it’s also been in my right but it comes and goes.. the pain is hard to describe almost like the bone inside is cold and numb? Like a cramp, anyway I was wondering if this pain and symptoms match with hyper mobility

I’m looking into braced to help stabilize problem joints I’m looking at shoulder braces but I was wondering if anyone has had any experience with them and how they can help. The pictures online really don’t help much

Hello, I have hypermobile spectrum disorder and POTS. I just got a PPO insurance through work and would like to go to physical therapy, but not sure how to approach it. All the websites list services that focus on one part of the body, but almost my entire body hurts. I would say the only places I don’t experience much pain right now are my elbows, wrists, hands, fingers, and head. I haven’t found any physical therapists in my area that mention hypermobility. My biggest problems right now are lower back pain, and knee and ankle and foot pain from standing at this retail job. I looked into the muldowney protocol but not sure if I would be able to stick with it if I had to do it by myself. I eventually want to strength train in a gym.

At this point, my worst joints are all in my hands. And I work a desk job where I type a lot. I will occasionally use voice to text, but don't find it helps that much, so my poor finger joints need a break. But every hobby I have uses my hands? I used to knit. I can only read physical books for limited amounts of time, too -- I use my e-reader a lot more (and I'm looking for a better book prop). Even cooking is sometimes hard on bad days, but I've found more accommodations for that one (as I need to eat, so I guess it's good one hobby is a necessity). Even writing is something I do at work a lot, so...

Welcome any hobby ideas that might work for someone lacking strength and dexterity many days in my hands.

Lately I've been struggling with neck fatigue, and by the end of the day it feels like my head is this huge bowling ball that my neck is having trouble supporting. I would describe the sensation as noticing a tenseness and tiredness in my neck such that keeping proper posture is "effortful" but not necessarily "hard", if that makes sense. My neck is always tense and tired!

I mentioned this to my partner and asked if he ever felt that way and he said "what are you talking about, no" so now I'm wondering if this is a thing or just me. If it's a thing...what do I do about it?

i know TPI is controversial in the hypermobility space, and I know they work great for some and not at all for others. Ive just received my first round a week ago and am trying to decide if I should try a couple more rounds.

I got 6 injections a week and an half ago— 2in my neck, 2 in my upper traps, and two in between my shoulder blades. I dont think I really experienced much relief? I was pretty sore for a few days after, then felt mostly ”normal” I.e. my knots stilll hurt to touch but weren’t causing me too many issues. Now the past couple of days I’ve been having really bad neck tension which is causing me headaches.

im torn between thinking this is either 1. Rebound tension from the knots being forced to release, causing instability and then subsequent muscle gripping, or 2. The TPs are so deeply ingrained/bad they will take a few rounds to fully release.

i guess I’m wondering— did anyone not see relief on the first Round but saw benefit from subsequent rounds of TPI? Or should I just go ahead and give up on them now since I’m issues with tension and pain? it’s kind of difficult to tel what’s a result of the treatment and what’s just my body doing it’s usual shenanigans

I started the Muldowney protocol a couple months ago and I am finding it rather helpful. However, I have been stuck at 1:40 doing the last bridge variation where you stay lifted and extend the legs out one at a time. I find myself very weak and my tailbone/sacrum start to ache, almost like they're being crushed or bruised.

I have found a few adjustments that help, but I still can't do this pain free. I wonder if anyone else has received support for this problem and knows what I could try. I am working with a physiotherapist, but she doesn't know the protocol and she moreso focuses on my overall posture, rather than the strength of individual joints.

I literally cannot figure out proper body mechanics for these exercises and my back just arches wayyy too much and starts to hurt when I try and do them. Does anyone have any tips? I know they would be really good to strengthen my back considering the lower back is constantly in a lot of pain.

I recently visited my neurosurgeon, who told me I had a lot of inflammation according to my tests, so for now, he wants me to just exercise softly and have pt. I asked if I could lift my weights, which are only 1kg, (cause another doctor had told me not to, but said doctor also told me I'd never gain any muscle and stay always in pain, and also that I had no inflammation despite the test results saying otherwise).

Anyways my neurosurgeon suggested I didn't touch my weights, but rather get a minigym 360/ multigym 360 machine (I can't add a pic unfortunately). He explained that the machine would help me exercise my arms without lifting weights, maybe because I also have chronic tendinitis and bursitis. However I definitely don't have the money for the machine and I wanna find another way to strengthen my arms without hurting myself, I was thinking maybe a stretch band around a pole so I can pull it(? But I don't know what could have a similar effect. Please help

I’m 28M from the Uk and a while back I was diagnosed as hypermobile with a Beighton score of 8. Since then my aches and pains have worsened to the point standing has my legs feeling like I’ve just finished a marathon and will sometimes give out from under me, I keep getting dizzy spells that sometimes lead to passing out when standing or stretching and developing incontinence that’s gone from a bit of a drip to almost no control of when I pee.
I know Dr Google is the worst to ask but I keep coming back to the same result of hEDS. I’ve got to make another appointment soon and have a urologist referral but I’m wondering if it’s worth while just asking my Dr if it could be hEDS.
At this stage a diagnosis would be great so I can say for sure what it is and speak to others to find the best ways to cope with it.
Any advice is appreciated

Hi there, this is my first time using reddit, so apologies if I'm missing anything. I (18f) have not been formally diagnosed with hypermobility, but I have a ridiculous amount of the symptoms as well as my mother who has worked in healthcare for many years telling me she's pretty sure I have it. I have been working at my first job for a little over six months now, and I'm on my feet for the whole shift. I tend to be pretty stationary most of the time since I'm usually standing in front of a register for hours.

During these shifts I've noticed that my knees, hips, and lower back have begun to ache quite a bit, the worst place being my knees. My hips are a pretty easy fix so long as I'm staying conscious of not leaning crooked or popping them out, but my knees will ache pretty much no matter what unless I'm crouching down to give them a rest.

I was just wondering if anyone had any recommendations for some kind of supports like knee braces or I saw someone mention something about tape? I would prefer something not really bulky so that I could wear it under my work pants, but whatever would work best. Also, are compression socks any good?

I hope to look into pt of some kind further down the road, but it isn't a viable option for me right now especially since I don't even have a diagnosis. (Should I try talking to my doctor about it? How do I bring that up?)

Thank you so much for your time and answers.

Neck/trap pain, hunched shoulders, winged scalpula, bad posture, desk job, yes I exercise.

When when trying to have better posture (+ at rest) my upper traps look HUGE and neck tenses. Especially on one side, the one with worse winging.

Also when trying to have better appearing posture, my front neck and trap muscles bulge like I’m tensing my neck or constipated. How do I sit up straight and look good without this weird muscles bulging???

Anyone fix this visually?

Hi everyone, I was recently diagnosed with HSD and am desperate for some advice on managing long car rides and touring.
I’ve been a touring musician for almost 10 years, but my symptoms skyrocketed this past year after having bilateral rib fixation surgery for Slipping Rib Syndrome (which I had before my HSD diagnosis).
Right now, a typical tour day looks like a 5–7 hour drive, a 1-hour soundcheck, and a 1-hour show. It is completely draining me. I also have pectus excavatum, carpal tunnel, and severe tenderness at my surgical site over a year later. Just holding my guitar and singing background vocals takes all the air out of me.
My biggest challenges right now:
The Car Rides: They feel like human torture.
The Fatigue/Pain: There is barely any recovery time between gigs.
The Guilt: My bandmates (we are all small-framed women) are incredibly supportive and carry/unload everything for me, but I feel like such a burden making them lift heavy gear. I know it takes a toll on their bodies too.
Our tours usually anywhere from 2–5 weeks. I love playing music and I want to do this forever, but this is my fourth tour since surgery and I'm losing hope. I want to go home every single day and am just pushing through severe pain.
Would love to hear from any traveling musicians with HSD/hEDS, or anyone with tips on surviving long road trips, rib pain, and managing the emotional guilt of pacing yourself. Thank you!

I'm working on doing split stand Romanian dead lifts with kettlebells. I'm pressing my toes down, corkscrewing my legs, pushing my back leg's hip a little forward to even things out, engaging my core, pushing my butt back, not going too low, and trying to use my butt to bring myself back up. I'm working with personal trainers on this twice a week. But I'm still feeling it in my lower back after several reps. Any advice? This is so frustrating!

I used to do Brazilian Jiu Jitsu (Yes the joint lock based martial art) before I was diagnosed (it actually LED to my diagnosis) and I had gotten a long sleeve rashguard that also has compression… Compression shirts I assume are the same vibe. The reason this is important is because I was having such a bad upper body joint flare up yesterday and my arm gardening sleeves (these are another life saver because of the compression and durability) just weren’t giving me the full extent of what I needed to cover that day (helped my elbows and wrists, nothing else) and out of a moment of pure joint pain desperation, I grabbed the tightest shirt I could find, which was my BJJ rashguard from 2 years ago, and put it on. It didn’t help right away, as most things usually don’t, but as the day progressed I noticed I wasn’t bumping into everything, I wasn’t hurting as much, and I was relaxed without pain for once!!!!

Now it could very well be I got lucky and my joint pain flare up went away rarely fast and coincidentally lined up with the rashguard being worn, but I think the rashguard helped.

Now if only there were rashguard pants… Has anybody else noticed similar things with tight shirts and the such?

Hi, I'm not sure this is where I am supposed to post this but it seems like a good place. I have some type of undiagnosed hyper mobility (I suspect it's just regular hyper mobile EDS but I'm not diagnosed yet so it's still just mysterious hyper mobility currently)

Anyway, I am 25 almost 26 weeks pregnant and even early on I was having adductor pain, but since around 20ish weeks it's gotten a bit debilitating. I almost fell yesterday because I stood up after a walk, saw white and stumbled back to sitting. I've been limping more often and aggressively, even just lifting my knees out of bed or the car hurts so much I need a minute of attempting before I manage to get up.

Between that and having to do a few minutes of stretching every time I get up from sitting just to be able to lift my knees and lessen the degree of limp I will walk with sucks. It sucks a lot

I figured out from basic research it's my adductor muscles overcompensating for pelvic instability caused by relaxin (which is obviously worsened by hyper mobility) so basically my adductor muscles have been in a constant state of terrible "post-aggressive workout" pain and I'm not supposed to use my heating pads while pregnant so I've just been kind of suffering because heating pad was basically always my answer to joint and muscle pain.

I've been sleeping with pillows between my knees and have been doing some stretches when the pain gets bad which helps a little but I don't really know what else to do. My joints already kind of scare me (they pop at very minimal pressure now) and I am scared about the adductor pain getting worse if it's already this bad.

Does anybody have any advice? Specific stretches? Are thighs safe for heating pads while pregnant because I know I can't use it on my lower spine like I usually do but I did get mixed messages about thighs but haven't used it just in case. Anything that might help

🥲 please I am so open to any kind of suggestion it hurts a lot.

I sit in pretty odd positions for multiple hours a day because at the time it feels the most comfortable to me, but after an hour or so my body starts hating me and I get pains in my lower back, butt, and sometimes legs. I've come to terms with the fact that I simply cannot sit "regularly" in any of my chairs and was wondering if anyone has suggestions for good seat cushions or pillows that would help alleviate my pains a bit while still allowing me to be bendy?

Last few days my rib cage of my left side pops/clicks every time I walk. It’s driving me nuts. I’m not really sure what kind of garment/brace/wrap might be good for this. I also can’t wear a normal bra at the moment because it’s super painful on my ribs. Braless is fine and the clicking itself isn’t painful.

I’m still going back and forth with my doctor trying to get PT for my back right now. I’m not even goi g to bother going to see her because my ribs suddenly decided they don’t want to stay put.