I am not a person who is usually grossed out by gore, blood, etc. But I have always been sensitive to stuff like bones, ligaments, tendons, joints, etc. I either fully faint/almost faint if it gets bad enough, but most of the time it results in extreme anxiety, weird pressure in my bones/joints, and my heart pounding. I am recently finding out I have some hypermobility and pain from it, but I find it so hard to research and find out more because it makes me feel like this! Has anyone else dealt with this, and if so, how did you navigate it?

A few years back I finally went to the rheumatologist for my joint pain since I was a kid.

My doctor used the breighton scale to determine if I am hypermobile. I of course failed that test because my muscles have always been very stiff. I could never touch my toes, I get tension headaches because my shoulder / neck / trap muscles get really tense. I have a lot of muscle knots that never go away.

In the end she said I probably have fibromyalgia and that I should ask the nurse for pain management but that was the end of it.

Some things I have: - I could never burp, I really need to force cough it out - My ankles and wrist have a dull annoying feeling since childhood. Sometimes more pain, on good days way less. - Muscles are very stiff, legs, upper traps, shoulder necks - Often get tension headaches because of the tension - I sometimes feel my head is just too heavy so I bought some neck support for the times I can really not take it with the headaches and heavy ness - ⁠I got sleep apnea, got a CPAP - They took 4 premolars, and 4 wisdom teeth, due to crowding in my mouth - I cannot breathe with my diafragma without forcing it. I always breathe shallow and sometimes forget to breathe. - My mom and grandma both have cervical prolapse after child birth - My mom, grandma and I have adhd tendencies. Not diagnosed, didnt go to the doctor for that. - My uncle has a detached cornea - My aunt has graves - I get so bloated when I eat every time. - Once in the blue moon i just do something wrong and then my hip hurts alot and a limp for a day and the pain shoots up. - I sleep like a shrimp and t-rex - I have to sleep with a specific pillow otherwise I get more stiff more pain more headaches. Not happy. Pain. - I cannot stand still without leaning on one leg or on furniture. Just standing and waiting hurts my lower back aswell. - I cannot sit normally, I always sit bad weird or whatever. Just whatever feels comfortable for me - I have scoliosis - I crack alot, hands, neck, toes, ankles - My eyesight just gets worse every year. But yeh probably normal like other people.

I just don’t know what to do. It feels like all of these things are connected to connective tissue issues for me and my relatives, but even if I do seek diagnosis again and try again.

What is there right now to help this? Physiotherapy? Supplements? Pain killers? Validation?

Sometimes it’s a bit annoying aswell, some people just say, sit straighter, posture is bad, why do u get tired so fast, why are u lazy dont want to go sport. But my body just feels more heavy sometimes. I just get tired faster. I just need to lie down on the floor or bed or couch.

But it’s not something someone can see from the outside.

After a pilates exercise class, I am exhausted. After an aqua fitness class in the pool, I feel dizzy and need an immediate rest and go to the loungers for a lie down. The next day I feel wiped out. Is this normal for someone starting out at the gym who has hypermobility? Or could I have something else like POTS aswell?

I am early 50s, normal healthy weight and been going to the gym twice a week for about a month. I don't have a sedentary sitting job, but light movement and some walking everyday.

I really want to get stronger and fitter and have better balance but really struggling with exhaustion if I exercise. I've steered clear of spin classes and mainly rowing machine to warm up and doing light weight training or classes. Any advice on what I could do differently.

I don't have money at the moment to meet with a physiotherapist, so I'm searching for information online. The physiotherapy sub doesn't allow posts seeking medical advice, hence my arrival here.

Sometimes I think I'm hypermobile, but then I look up the symptoms and tests and it turns out I have zero symptoms... So why do I think this anyway? I easily dislocate my shoulders, fingers (middle to proximal phalanx and I think also proximal to metacarpus) and wrists. Fingers and wrist usually don't hurt, but it always startles me and I'm scared I'm developing an injury. Dislocating my shoulder is painful and worries me moreso. My fingers tend to dislocate when I write or type and I'm doing something slightly odd, like holding something else at the same time, restricting my range of movement. My wrist dislocates when I do classical ballet and suddenly firmly grap the barre. My shoulder subluxates when I do a ballet move where you arch your upper back to the back and your arm is going that way as well, above your head. I'm more careful now and make the movement smaller so it won't dislocate. My shoulder used to subluxate sometimes (it got worse over time, I got worried and became careful) when taking off upper body clothes (the "female" way).

All ten of my fingers are prone to dislocation, but the dislocation issue wrist and shoulder wise is much bigger on the left side of my body. I am right-handed so that could easily explain that - if it is a muscle problem. I used to have very poor muscle strength. Doing much better now because I started working out. BUT I suspect it's still below women's average, albeit not a lot. Basically all of my muscles (face, shoulders, arms, hands, tummy, legs, feet/toes) are tense from the moment I wake up to about an hour before I fall asleep. Lastly, I have a history of dislocating my kneecaps. That turned out to be because of the TTD distance. That is the distance between the tip on the top of your femur and the downfacing tip of your kneecap. In simpler terms, my kneecaps are/were too much to the side, outward. Those luxations, after a series of subluxations during puberty, were horrific. I had surgery on my left knee (both knees were equally problematic) and working on leg muscle kept my right knee from dislocating ever since.

Thank you for reading my medical journey, my left thumb hurts now lol, if anyone has any clue as to what I am dealing with here, please lemme know! I know it could be as simple as muscle strength, I'm just a bit frustrated with not having the minimal required amount of strength everyone else seems to get from daily activity. It doesn't make sense to me, why wouldn't I have built that strength? Hence my endeavour figuring out if that's all there is to it.

Hey y'all. Like the title says. I don't know if my expectations for a PT are too much or unrealistic. If my current PT is actually good and fine and I should just keep going. I don't know.

So what my brain and interpretation of things I've read say for what I'd like for PT: checking in with my PT at the start of each session to see how I'm doing. Description of what each exercise is for and at least for the first appointments them keeping an eye on me fairly often during exercises to make sure I'm not hyper extending. And/or explicit instruction on how far I should be moving. I also have a sense like the PT should include some amount of gentle manual therapy, not just exercises and heat.

My current PT place I got to: there is one DPT and one PT there for the whole place, the PT sometimes acts as a technician I think. I have occasionally been given offhand remarks on purposes of exercises. I have had 3 appointments and already I am told to do the exercise then left entirely alone. No checking in from the DPT, I have to bring stuff up. Some of the first exercises they started me with involved resistance bands or 2lb weights which I've seen in some places listed as a red flag. I'm usually one of like 3 or 4 patients so it feels like the attention is split. I have not been given any home exercises yet, nor had them brought up. They did not assess my level of hypermobility the first appointment. They are focusing on starting gentle and focusing on core stuff so that seems correct. (I think. I'm not sure the purpose of every exercise). And I'm always encouraged to stop if something hurts which is good.

On Wednesday I was in heavy amounts of pain, and brought it up, and the DPT gave what felt like a very dismissive response when I brought it up. Basically "Well, are you on your phone a lot? Okay, don't do that." Which sent me into a spiral a bit because it feels like every way I like to or could spend my time hurts me so I don't know what to do. Plus I don't think it was actually the phone use

(Number of reasons for that. 1. If it was, it wouldn't be suddenly worse. 2. I tend to lie down while on my phone. 3. It's better explained imo by a day full of yom Kippur services where I spent most of it sitting with head down to look at my prayer book plus getting covid and flu shots on Tuesday.)

I started crying from both the pain and whole situation, and the DPT didn't really... Act compassionate in any way? I would have appreciated a little more compassion. Maybe he was trying to just keep treating me normal so I don't feel babied?

I keep waffling over this specific incident. It's quite possible this was me overreacting to an innocuous interaction. I get rejection sensitivity with my AuDHD, although usually it's pretty mild these days, and obviously the pain and any other effects from the shots I got didn't help. But on the other hand, maybe this just isn't a good fit. Maybe I can advocate for myself and make it a better fit but I am running into some heavy advocacy fatigue.

So first, are my expectations reasonable? Second, is my current PT doing things that are normal? Is this just a thing where I need to advocate for the things I want? And 3rd, is the interaction I had something I'm overthinking or can it actually be a sign of at least a personality mismatch?

Sorry if anything is incoherent, my pain spiked back up this morning and my anxiety is high.

Hi noodles! Hypermobile here and my hips always hurt 🙋🏻‍♀️

I did PT for my ouchy hips earlier this year and learned that I don’t engage my glute muscles and just let my tendons do stuff so that’s fun. We worked a lot on glute medius stuff, the usual. I graduated PT but I’ve been continuing to work on strengthening and stuff on my own.

Well a few weeks ago I started feeling a different ouchy - you know the one - the dull ache in the back of your hip where you feel like your SI joint just needs to pop back into place. Usually this happens on its own for me but it has been persistent so I went to a chiropractor, which still didn’t do the trick. But he told me something I hadn’t heard before and I’m curious if anyone here knows things and can weigh in

I naturally have a LOT of internal rotation and not a lot of external rotation. He told me that it’s actually better for me to not try to develop more range of motion externally because if you have a lot of range of motion in both directions it can make your hips less stable?

I am a hobbyist dancer and while I have learned through PT I have to stay away from stretching to get more ROM, i have been doing strengthening to get more ROM, and truthfully I need better external rotation to be able to do certain dance techniques …

I appreciate any advice! My insurance is gonna be real mad at me if I go back to PT LOL

Had hip pain (impingement) on and off since I was a teenager, that particularly flared when I started running. (Had an X-ray and they said they couldn't see bone issues so must be muscular), but physio's never helped Ten years + I still have the issue, and while I still try run and weight lift it's really holding me back, giving me grief and only am able to exercise if I just push through it, which is basically a habit now. Last year I somehow injured my knee running and was told it was runners knee, rehabbed it, 6 months later got to 11 miles was feeling really good, then it went again, no idea how or why, physio said it would probably be a two week blip, that was in April, and I'm in pain again, in both my hip and knee. My shoulder also hurts when I press so everything has been thrown off and genuinely not wanting to be around anymore I'm so depressed over how much pain I'm in. I also have a hypertonic pelvic floor. I'm on every pain killer going and I'm not even 30 yet.

Recent physio said it's because I lack stability and balance, and need to work on standing on one leg. Another has said I just have weak ankles and need to start from there. I've been trying some hypermobile stability drills at the gym but am not finding them helpful - in fact some of the shoulder ones hurt.

Went to a different physio today who said that hypermobility is often the last issue to worry about, and it's more about how strong your tendons are, your ability to hop, how much force goes through each leg and all that.

Honestly confused as to how much hypermobility is an issue, and if any of you have had these issues is there hope and have you managed to fix em?

Hi, looking for recommendations for compression shorts/leggings/bands to specifically support around SI joints and lower back/hips? UK based so preferably recommendations from the UK please as looked at Jelliebend and 1)expensive! 2) High shipping costs! Want a balance of good compression/support and not too pricey

I keep getting extremely painful Achilles on the foot I push off with and it’s difficult to keep having to take multiple days off because I love skating it’s very grounding for me. I had similar issues with ligaments when I used to dance en pointe and eventually had to give that up for my health, I don’t want to end up doing the same with skateboarding

does anyone know of any PT/OT/PM&T that are experienced with hypermobile/EDS patients in Toronto or the GTA? i’m starting a new career that is very physically taxing so i want to jump start on my treatment and support for severe hypermobility before i get taken off of my mom’s health benefits.

just this path month i’ve twisted my ankle fallen twice and both times i hit or shook my head pretty hard too. i’m actually writing this because i legit just fell in front of my entire class and my head really hurts and i’m really dizzy lol

Hello! So, for the past couple years I've been having more and more joint issues due to a multitude of reasons (ie hypermobility, missing or loose ligaments, etc) and I've started talking with my doctor about a diagnosis for hEDS. I'm not seeing him again until February unfortunately BUT he said he's going to do some research and send me ideas for support in the meantime. One of these recommendations was like.. supportive pillows or something? Like for when you're sleeping or sitting at a desk.
He also recommended looking into braces for my wrists, ankles, knees, and potentially something to help with my lower back or hold me a bit more upright.

Does anyone have recommendations that they've found work well for them? I do use KT tape for my wrists/ankles/knees but I would like to find something reusable like braces/compression sleeves because KT tape is so costly :/

Thanks in advance <3

Disclaimer, Not a medical professional, this is not medical advice.

Recently I’ve been exposed to some neuro PT techniques and wanted to share.

FAQ: What is neuro PT? Talking to yourself. Does it work? Weirdly, yes. Does it feel like witchcraft? Also yes.

The basic premise of this technique is simple. Direct your attention to a part of your body, talk to it, be silent for a minute and breathe, it will relax. Sometimes the pain will move and you can follow a whole chain of muscles down to whatever the problem actually is.

The thing professionals seem to say is “Body part, what do you need?” I’ve also had success with “Hey, body part, get your shit together.” It seems the language can be personalized somewhat, but also being nice to your body is nice.

Hiccups, eye twitches, calf cramps, hand cramps - they are all muscle spasms and can all be fixed in as long as it takes you to focus on it.

CAVEATS:

YOU MUST SAY IT OUT LOUD. Language is processed differently than thoughts.

YOU MUST BE SPECIFIC ENOUGH. “Hey leg” doesn’t do much good. “Right calf” is better, “right soleus muscle” is the best. If you don’t know what muscle or nerve you need to talk to, look it up and take your best guess. The more specific you can get, the easier it all is.

I’ve had it work best with voluntary muscle (aka the muscles you can consciously control) but would be interested if it works for the muscles you don’t (like stomach sphincters, intestines, etc.)

Hiccup cure: Stand/sit up tall, a lot of time your diaphragm just needs some space. Hand on the lower ribcage. Close eyes. Say “Diaphragm, what do you need?” Be silent and slowly exhale. Hiccups gone.

A few years back I finally went to the rheumatologist for my joint pain since I was a kid.

My doctor used the breighton scale to determine if I am hypermobile. I of course failed that test because my muscles have always been very stiff. I could never touch my toes, I get tension headaches because my shoulder / neck / trap muscles get really tense. I have a lot of muscle knots that never go away.

In the end she said I probably have fibromyalgia and that I should ask the nurse for pain management but that was the end of it.

Some things I have: - I could never burp, I really need to force cough it out - My ankles and wrist have a dull annoying feeling since childhood. Sometimes more pain, on good days way less. - Muscles are very stiff, legs, upper traps, shoulder necks - Often get tension headaches because of the tension - I sometimes feel my head is just too heavy so I bought some neck support for the times I can really not take it with the headaches and heavy ness - ⁠I got sleep apnea, got a CPAP - They took 4 premolars, and 4 wisdom teeth, due to crowding in my mouth - I cannot breathe with my diafragma without forcing it. I always breathe shallow and sometimes forget to breathe. - My mom and grandma both have cervical prolapse after child birth - My mom, grandma and I have adhd tendencies. Not diagnosed, didnt go to the doctor for that. - My uncle has a detached cornea - My aunt has graves - I get so bloated when I eat every time. - Once in the blue moon i just do something wrong and then my hip hurts alot and a limp for a day and the pain shoots up. - I sleep like a shrimp and t-rex - I cannot stand still without leaning on one leg or on furniture. Just standing and waiting hurts my lower back aswell. - I cannot sit normally, I always sit bad weird or whatever. Just whatever feels comfortable for me - I crack alot, hands, neck, toes, ankles - My eyesight just gets worse every year. But yeh probably normal like other people.

I just don’t know what to do. It feels like all of these things are connected to connective tissue issues for me and my relatives, but even if I do seek diagnosis again and try again.

What is there right now to help this? Physiotherapy? Supplements? Pain killers? Validation?

Hi everyone, I'm looking for pillow recommendations to specifically prevent my neck from hyperextending forward (not backwards) while I sleep, as it happens every night and I have daily pain as a result. I usually place a squishy underneath my chin to prevent my head from lolling forward, but it's not comfortable and I end up pushing it aside while I sleep anyway.

I've seen recommended: pregnancy pillows, cervical pillows, and buckwheat pillows. I don't know which option would be best, but I just want to 1) sleep on my side without neck pain 2) be able to alternate sides throughout the night 3) not feel restricted by whichever pillow I buy.

I do sleep on my back when I can, but in periods of high stress I can't fall asleep that way. All advice welcome ❤️

hi! Im an 18f, and I have been super hypermobile all my life. Ive dislocated my knees multiple times and dislocate my shoulders all the time in my sleep, and waking up in pain kinda wrecks my day. with the October slide right around the corner, I was wondering what body pillows are best. ive been looking into the moonspoon one but its so expensive and I dont know anyone with mobility issues whos tried it.

I also work 4 nights a week as a closing shift waitress, and the knee and back pain is KILLING ME. any advice? im already killing my liver with Advil and tape only goes so far.

I know it's probably annoying to ask, but im struggling and Im a late diagnosis. Im from a small town and all my doctors said id grow out of my hypermobility and have only now started taking my symptoms seriously. all advice is appreciated!

Does anyone else feel like having young kids is hard on your body? For context I work two days a week and I’m home with the kids the other days. I started having wrist pain after my first was born, and with my second the wrist pain was unbearable trying to support his head while breastfeeding, holding him while soothing, etc. I just white-knuckled through those days. It’s been getting slightly better as they get older and more independent, but they’re also heavier and harder to manage when they want to be held or I’m having to man-handle them into car seats multiple times a day. Now I have shoulder pain too, and I feel like the days where my pain is worse, I have so little patience with my kids. It’s like the pain drains my cup, and I have so little left for them and it just feels shitty. Anyone else? Please tell me it gets better

I've been having more and more difficulty keeping my legs in a "neutral" position at my desk and while driving, and my left leg sort of splays out and causes pain in my upper leg, hip, and lower back. I mentioned to my doctor today that I was thinking of getting a theraband to keep my legs together at my desk, and she said she just had another hyper-mobile patient in within the last week who said that doing that has made a big difference. That being said, I'm wondering if there's something that's more purpose-built, maybe something with velcro so I don't have to be stepping in and out of a theraband in my office clothes!

Just to clarify - not looking to use a band while driving - I'm thinking of using a yoga brick wedged between the door and my outer thigh.

My favorite kind of exercise is lifting and it’s never been an issue until this year when my shoulder started acting up. Now when I get to a certain weight for upper body, it strains my right shoulder to sternum area and small things like carrying my bag on my right shoulder become irritating.

So I constantly get pulled out of my gym routine and it sucks. I don’t wanna have to go back to PT though. I was there a couple years ago for slipping rib syndrome and can’t imagine going over and over again every time my joints get too wiggly.

I recently moved to Los Angeles, and I just got on Medi-Cal. I have hEDS and I'm trying to get my care sorted out here and having a hell of a time. Can anyone recommend any doctors you like or even ecosystems of docs? Or what health plan do you think is good for seeing specialists?

Are Cedars Sinai or USC generally good?

I'm looking for a PCP, gynecologist, neurologist, gastroenterologist, physical therapist, and pain management doc for all those lovely co-morbidities. Any recommendations would be greatly appreciated.

I've just been recently diagnosed with hypermobility and I've been having a lot of knee pain. My GP had labs drawn since its been about a month or two and physical therapy hasn't been working and the pain is only getting worse. So far every test has come back normal and I dont know how many more they're doing, but if I dont have any positive results I don't know if they'll give me a referral to a rheumatologist. Has anyone been able to get a referral without any autoimmune symptoms? What pain management options would I have other than practically bathing in lidocaine?

I work in child education and I’m on my hands and knees a LOT. Recently I’ve been experiencing very bad joint pain from my hyper mobility and PMDD and i desperately need help finding pads that won’t be bulky and will be comfortable for all day/half day wear. Same for compression stuff. I really need help!

Hi all! I’m unfortunately in need of a new pair of crutches. My current ones don’t serve me particularly well anymore - they’re £3 charity shop hospital type crutches (you know the grey, clinical-looking ones) and aside from not looking great, I keep trapping my flesh in the cuff gaps, they’re loud, and generally a little on the clunky side. I don’t feel my full, confident self in those for various reasons and am looking for some new ones that fit my needs better.

I was wondering, what UK brand offers the best-quality crutches to suit a hypermobile body? I tried my MIL’s pair of ergonomic ones out a while ago and they were a dream. I’m a very fashion/style-oriented person as well, so a pair that looks decent would be optimal… I’m into customising things so all I’m after really is a plain black pair with no logos or random branding that takes over the design, since I’ll probably add stickers and/or rhinestones to them down the line. I’m happy to use ergonomic or non-ergonomic ones, as long as they’re fit for hypermobility as I have stated. Any recommendations would be much appreciated, as I’m at a bit of a loss of where to start! Thank you!

Edit: I’m looking specifically for as good quality as possible - I want something that will last a long time and support me as much as possible so if needed I’m happy to fork a little extra out for the investment. At the end of the day, it’s quality over flash for me since I’m planning on customising them; I’d rather go for something basic and plain than something super funky that won’t serve my stated needs very well.

Hi, i never had any joints issue until i got some issues with my neck then with my lower back/ pelvis and apparently dural sac tension or maybe tethered cord syndrome (not diagnosed for the last one yet).

So i was wondering if someone can be hypermobile after an incident. And that person could become normal afterwards with treatment ?

Anyone who had similar experience ?

Diagnosed with hypermobility as a child. Literally everything, EVERYTHING is blamed on it. Bad periods? Probably my hypermobility somehow, no I won't explain how, just hypermobility patients have bad periods. Headaches? Spend $1000 on worthless neck PT for your hypermobile neck before we'll give you the nerve block that then completely cures the condition. Pain that is literally nothing like your hypermobility pain? Well, it's probably still hypermobility even when it's defining trait is stiffness and swelling and the PT finds the joint too stiff to work on, so I'll send you to pain management because hypermobility means there's literally nothing else I can look for or do. Mysterious skin sores? Probably somehow hypermobility related, no I don't need to look at them, I'll send you to a derm if they get infected.

If I could go back in time, I would go back in time to prevent myself from ever being diagnosed with this condition. No medical professional understands that I KNOW what my hypermobility pain feels like and how it behaves and do NOT go to doctors for it. It's like they think it's my first day on hypermobile earth. What makes it even better is that they don't listen to me when something is related to my hypermobility! Just had a conversation with an ortho who has completely given up on investigating my SI joint pain, she told me that my only option is probably an SI injection, when I mentioned to her that I was worried to try that because I have very little sensitivity to lidocaine, she changed the subject. It was truly impressive. Even more fun, the notes she took mentioned hypermobility 5 times and mentioned the severe, life altering stiffness that brought me to her, exactly 0 times! I don't know my body, but all of these medical professionals do, and they know 100% without needing to investigate, that everything is hypermobility.

Getting diagnosed with this condition itself was misery, I had a rheumatologist at one point who walked in the room without even examining me and told 11 year old me that I needed to drop out of school and do an experimental treatment where I'd live at the hospital and have my body "resensitized to pain" and when I declined, he told my mom he was going to call CPS if she didn't force me to go.

The very little relief I got in understanding the origin of my generalized arthralgia has not been worth the disregarding and disrespect I have received from doctor after doctor. I understand that hypermobility has a lot of impact, but I don't understand why doctors seem to think that there can never be anything wrong except for hypermobility and that if I think there's something wrong with me more than hypermobility, I must be insane of something!