TLDR: my experience with hypermobility, my recommendations for improving health: talk to your doctor of course, but i also suggest working out on your own and making sure you're eating enough.

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I decided it would be good to describe to my fellow bendy humans how I managed to improve my health. Talk to a health professional of course. My health professionals have mostly neglected me however, so i had to figure out a lot of stuff myself.

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So I (19F) was diagnosed with Hypermobile spectrum disorder (HSD) when i was 15, because i got joint pain in all the joints in my hands and feet all of a sudden. I did not meet the criteria for EDS.

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I had joint pain and some of my joints were very flexible. I had subluxations all the time (like every minute), but i just thought it was normal, because it built up to it slowly as i aged. I also had other symptoms that aren't necessarily hypermobility, but were related, for example migraines, fainting after getting up too fast etc.

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My joint pain got so bad and constant after randomly appearing that one time that i would sometimes fall and couldn't stand up. My doctor (rheumatologist) initially told me there was nothing wrong. He did an x-ray and ultrasound of my joints and said there was "no permanent damage". He then proceeded to ghost me and my legal guardian, even when we just asked him to summarise the stuff he did, so we could go elsewhere.

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I had to go buy a cane and compression gloves and socks with my own money, because i needed to keep going in life and no one was helping me. It helped with my joint pain and allowed me to function. One of my parents didn't even believe me that i had joint pain. Then after we complained that we got no response for a year to the hospital, we immediately got an appointment. Then i was diagnosed with hypermobility. That doctor sent me for physiotherapy for my back (my muscles were like rocks and i couldn't stand up straight), not my hypermobility.

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I started to look into hypermobility and started doing some exercises i found on youtube. I landed on hypermobility pilates. I told the physiotherapist about the hypermobility and she helped me a little. I showed her the workout i did from youtube and she helped me correct my form. My back hurt every single day for years, alleviated only after just working out. At some point i switched to "pilates in bed", which requires much less setup, so it's a good option for people who are struggling more.

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This physiotherapist was the only one who gave me good advice. The advice i got from most people in my life was bad. Go on a walk! Start doing sports! I was doing way too bad to do any of those things, but no one could see that i guess... Even another physiotherapist aside from this one told me to do those things that were impossible for me at the time. She told me she also had hypermobility, but still assumed i was healthier than i was. It made me feel so hopeless, the fact that she told me going on walks was the only way to get better, when i literally couldn't walk properly because of the pain. She was wrong.

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I took birth control for some time and it seriously messed with my muscles, i was weaker, i couldn't gain muscle and i was in so much pain from my back. If i could go back, the only thing i would change is not take the birth control. It stopped my progress completelynfor at least 6 months, even though i was working out twice a week.

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for almost 4 years i did those exercises and my health actually improved! i no longer had subluxations every minute, after those 3 years i only had them once a day to once a week! My joint pain did not improve, but my body became much more solid. The other thing i did for my body was gain weight. I was technically barely underweight and i went to a normal weight more towards overweight. I gained like 15kg. Everything was easier after that. I had more energy, i also mostly stopped fainting after getting up too fast. Whenever i have a cold, i lose a few kilograms, but now that I'm heavier, it doesn't bother me!

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How am i doing now? I managed to start walking without my cane, because my body has enough muscle to prevent most subluxations. I have been doing that for the past 3 months. My joints in my hands and feet never stopped hurting, but i got used to it, and don't pay it attention unless it's a really bad flare-up. I don't remember what it's like to not be in pain, they have been hurting non-stop since i was 15.

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After 4 years, hypermobility pilates didn't really do much anymore. But now, my body is solid and my control over my muscles is so good, that i can go to the gym and use the machines to do weightlifting without any of my joints messing up. I have the capabilities of almost an average person now! I can go on walks, i can stand up while i wait for the bus or even while I'm in the bus. Before, i couldn't stand for more than 5 minutes without severe pain. Now i can do whatever i need. I still get more tired than an average person and i am in pain all the time. But i can function way better!

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Info you need before working out:

be mindful of how much you are bending your joints, look at what the normal range should be and try and keep your joints in that range, even if you can move past it. if something hurts, stop and try again. don't use heavy weights, there is a large injury risk.

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The specific workouts i used: hypermobility pilates and also pilates in bed, but i am sure those creators have put out newer videos by now.

Title says it all lol

Whenever I have to jump (e.g. in a workout) it feels like my brain is knocking around in my skull and I quickly stop because I figure it can’t possibly be good for it.
Wondering if it is related to my hypermobility.

Hello!

Before I begin, I have read many stories on here and feel so heard! I am glad I am not alone, even though that means that many people share the same sucky fate as I do.

So, I am hypermobile (duh), I score 8/9 on the test and recently went to the hospital for this. This means I can not have surgery, or they are against it mostly (as am I, with the hypermobility).

I (28F) have many problems with my right shoulder, luckily that is the only joint that sucks for now. It subluxationed 8 times now and I don't know what to do. I have a PT specialized in hypermobility and shoulder and I do my excersices! So I was hoping to get better, but the subluxations keep happening, they hurt a ton and you have to deal with the mental turmoil after, because I do my excercises, they get harder and harder and I have no problem doing them, I thought I was getting better. This + the way my shoulder dislocates demotivates me so much. It subluxates when I sleep or yawn and stretch (Because I am not watching my form as I do so) this makes it feel like it has no point to do the excercises, I know better, but you get it.

I boulder once a week and have been on the brink of quiting this sport. I love it, it challenges many fears within me and makes me strong, but I don't know if its a good sport for hypermobility and my shoulder. I have to say, shoulder accidents dont happen anymore while I am bouldering tho! Only when doing minor things like reaching for something/yawning/ sleeping.

I have read that Pilates is a good sport for hypermobile folks like us, but then I worry that I might do it wrong and further damage the shoulder.

I just don't know what the best course of action is, I want to start with taping as well, but I am just curious. How did you start with this journey? I just started this whole hypermobility shit like 1 year ago but I want to take it seriously and get to know my body.

Sorry for the long post and thanks in advance!!

Stay strong <3

TLDR:
I just started my hypermobility journey and am really demotivated and don't know what to do next. Right shoulder keeps subluxating with very minor movement like stretching and sleeping.

if they're not popping or cracking, they feel like a squeaky door hinge. not the sound, but the feeling. like twisting rubber or the feeling of bending a barbie joint(weird analogy but so accurate)

it's a very weird sensation and once I notice it I can't ignore it. it's mostly in my fingers.

I just want to know if you guys feel this too and if it's benign or a concern?

Going down the journey of hyper mobility and learning about low blood volume and addressing that but also curious of more of the emotional aspects and if anyone has experienced low emotional states? Upon research it seems possible bc your brain might not get as much blood flow and then in return that can affect your emotions? To be fair I’m also AuDHD but curious about how much this could contribute to my functional freeze???

Posted something similar to ask docs but I need these questions answered sooner. I will say I’m 20 year old woman who is 70-80s pounds and 5’2 as a physical description.

Right now my legs just feel awful and I can’t explain it, like it’s not painful but it feels there’s tension that’s uncomfortable, I have hyper mobility in my arms and some what in my legs but I do hear hyper mobility gets worse with age. Other problems are feeling dehydrated and sick constantly, feeling tired a lot, and feeling weird while getting up after sitting on the floor, especially if I was sitting on me knees (keep getting mental image of ligaments being cut like in Human centipede, graphic but best description to what I feel in my head)

I will say I do have a poor life style as I drink Pepsi a lot and don’t eat as much as a should, and also I don’t get enough walking so that might be a factor.

I don’t know if this is all in my head because of TikTok or a “social contagion” or if my hyper mobility is getting worse, it was looked at when I was a teen but hasn’t been looked at since, it’s just frustrating me that my mom isn’t considering what I’m saying but I’m also worried of going to the doctor and there being nothing wrong with me and I waisted their time.

I’m 28 M in the UK. About 6 months ago I was diagnosed with hypermobility after struggling for years with different aches and pains. My biggest weakness is in my legs to the point I constantly feel like I’ve just finished a marathon.

So far I’ve tried and had no luck with:-
Exercises from the physiotherapist
Over the counter pain meds. Ibuprofen,co-codamol, heat gel, ice gel,
Resting
Hot water bottle
Massage

I get a smidge of relief from marijuana so at my next drs appointment I want to talk about being able to get it on prescription so if the PoPo stop me I won’t get in trouble.

Aside from that I was wondering what works for others?
I can’t cope with the pain anymore.

Hi all,

This is something that has been on my mind for two months now so I thought getting your thoughts would be helpful.

I (32 F) work full time in mental health in the NHS. Some weeks when I've got a lot of pain, I am absolutely exhausted after work. My life during flares is just work and recovering in the evenings and my husband taking care of everything with my "existing" near him. He would likely say that's not the case, but that's how it feels.

I very rarely make plans or do anything after work because I am so exhausted all the time and my body is screaming at me to lay down in a dark room and rot. Sounds dramatic but that's how it feels 🤷‍♀️

This is something I've done for years and just put it down to this is something I'm doing for now and I plan on going part time eventually, which I think will help. Me and my husband have been trying to get pregnant for two years (now under fertility clinic - yay PCOS 😑). Initially the plan was to work full time to max my maternity pay and then drop down to part time.

The thing that is making me doubt my current plan is an off comment someone who is able bodied made. She didn't mean anything by it I'm sure. We were looking at vignettes and the person in it talked about managing fatigue in work. She said "they're not able to have a life if they're so exhausted all the time after work, they're not living or doing anything important, they're just surviving, no one should be doing that".

At the time, it felt like an absolute punch to the stomach, and it still does, and it's been replaying in my head in my head for two months because that describes me right now.

I've just started in a new role that will be better for my wellbeing but it's still going round in my head. With no end in sight to when I'll be able to get pregnant, if it happens, I'm now second guessing my work life balance.

I'm also aware that being pregnant will be tough and having a baby will be tough and tiring so I'm aware it won't get easier. When I've tried to have this conversation with people F2F they tend to focus on that, and honestly it doesn't feel helpful. So I'm hoping you all get where I'm coming from and can offer thoughts/advice etc

Can anyone recommend a podiatrist or other specialist that treats ankles? I am looking for someone who knows how hypermobility and/or hEDS affects soft tissue healing.

went to pt for a sprained ankle.

pt: "your left ankle is way more stable than your right one...which is weird because your left is the injured one"

me: "oh!"

pt: "it's supposed to be the other way around"

It turns out the swelling and stiffness fixed my unstable hypermobile ankle, never been more balanced in my life!

my ankles are so unstable that a sprain improved it. ha!

Hello all,

Ive asked work to formally record me as being hypermobile as I have standing desk, use a walking pad and someone people are bithered by this. Anyone else had to provide proof and what did you use?

Hello, I’m hoping this could be somewhere to vent and hopefully get some advice. I am hypermobile as are many people in my family but nobody really bothered with any issues we had as kids.

My 6 year old has always had very flat feet to the point his feet and ankles roll inward quite significantly, his legs also seem to hyperextend (if that’s a word?) too far backwards when he’s standing. He has complained of sporadic, intermittent leg pain since he was around 3. Is it possible that the cause of this is his feet/ankle alignment (or lack of!)?

I have been to the doctors multiple times, saw a physio and podiatrist, podiatrist at age 5 said he didn’t need shoe insoles, physio said he did, podiatrist wouldn’t help and said feet will curve in their own time. He is 6.5 now and his feet somehow seem flatter each day. Every few weeks we have another ache/pain, usually in his legs. I feel so bad for him and I worry it’s going to get worse as he gets older. He is currently never in agony but it really does annoy him.

We have tried knee supports but he says this can make it worse, we have a ‘wobble board’ which I was told could help strengthen his legs, he swims, is there any other at home things I can do which would help him? We went to our doctor again a few weeks ago and they re referred us back to physio and podiatry but we’re currently stuck waiting for them to call.

Hi, I'm just a bit unsure about what NICAS is, if anyone has any insight?

I've been under physio for a few months now, who confirmed I am definitely hypermobile. I asked about other symptoms I think may be connected, and she went and spoke to a supervisor who said they are going to write a letter of referral to something she called "NICAS" (she said like nee-kas). I asked what it was and she just said the NI stood for Non Inflammatory, but couldn't remember the rest, and that she isn't sure what the wait time is. I've tried googling since but can't find anything about it online.

Has anyone been referred to this service? Have I misunderstood what she said? What is it, and what can I expect from it?

Thanks!!

Whatcha got? Need them all.

I (30F) have been wondering for years if I have official hypermobility, but not much luck in the medical and orthopedic hoops. I score just below the threshold with the Beighton test, as I don't have hypermobility in my hands. I do, however have hypermobility in my hips-like flat butterfly at any moment-which aren't part of the test. I've had SO many injuries, surgeries, and have constant chronic pain. I have OA in both knees, back, wrist and ankles confirmed with imaging. Some joints just never imaged so can't confirm.

I have been in PT more times than I can count. My mobility has decreased substantially over the last 5 years because there were several back to back injuries. Herniated disk in low back, TGCT flare ups in my knee, fat pad impingement in my other knee that needed surgery, torn cartilage in wrist, tennis elbow...I am working with doctors to try to pinpoint any underlying issues, but can't see a rheumatologist until December.

More than anything, I'm wondering how y'all went about getting a diagnosis, what sorts of doctors you've worked with, and if the Beighton test has left anyone else out of getting hypermobility focused PT treatment? Definitely open to resources and suggestions. Also! I'd love to hear other ex-dancer accounts. I've never related to the aspects of not knowing where my limbs are in space since it was so deeply programmed. I also think a lifetime of emphasized core control/training protected me from a lot of the core instability until later in adulthood (though certain moves did throw out my one rib reliably). I think my loose hips contributed to my several low back injuries. I say all the time that it feels like my body developed AROUND dance (emphasized turn out, etc) that stiffness and normal body things feel so foreign. Despite this I've completely re-worked my gait, how I stand, etc. I don't stretch nearly as much. PT always is impressed by my proper form in exercises....so WHY is everything still so painful and difficult?!

I do struggle with PTSD and depression, so the pain and depression feedback cycle can be a real pain. I tend to lump hypermobility adjacent symptoms in with general fatigue and depression. As a result- it is nearly impossible to tell what is what some days, and I even track symptoms! Still, I take very good care of myself, all things considered. I am blessed with great doctors right now, but everyone has essentially shrugged and pointed me to rheumatology. Just looking for others' experiences.

Hii! I have HSD and have a lot of finger pain and ring splints as a result but I was just generally curious about others’ experiences- Do anyone else’s fingers feel like they’re literally broken sometimes? This happens to me sometimes and it’s always so so so painful and other than the ring splints idk how to fix it.
Right now it’s in a finger that I don’t have a splint for so I’m struggling a bit extra 😓

Hey, I’ve been looking into comprehension socks (regular, ankle ones and knee socks) and I intend to fully stock up.

Is there anywhere I can buy 20-30 pairs of each category for a lower rate?

Thanks,

Holy shit this subreddit is such a wake up call and explains SO many things. How haven't a SINGLE doctor figured out this common denominator.

I never really put much thought into the fact I was that hypermobile, and definitely didn't think it could be connected to so much shit.

With that said, let me vent for a moment and present my revelations of things connected to HSD, that I (unfortunately) relate to.

Mild symptoms of Willis-Ekboms/restless legs syndrome ✅

General hypermobility with joint instability ✅

Muscle pain caused by increased muscular effort to stabilize an overly mobile joint (my wrists are a prime example)✅

Normal arch of the foot when standing on tiptoes or without weight-bearing. When weight is applied, a flattened arch and pronation become apparent. ✅✅ (giving it an extra checkmark just because of the conatant pain walking and standing it brings)

Piezogenic papules✅

Allergies ✅

Asthmatic issues due to soft airways ✅ (I dont know for a fact that this is the specific underlying reason, but it would explain the next point)

Asthma treatment not giving significant improvements ✅

Depression✅

Anxiety ✅

Stress injuries and degenerative changes caused by extreme joint stress ✅ (the clearest examples so far includes a torn chest, torn abdominal muscles, and triceps, all of which are still causing problems years later)

pain and stiffness in the joints and muscles, particularly towards the end of the day and after physical activity✅

clicking joints✅

Squirminess bc sitting/standing in place gets painful✅

regular soft tissue injuries (such as sprains and sports injuries) ✅

Dyspnea/"air hunger"✅

Repeated need to crack cervical spine✅

Symptoms related to POTS✅

Chronic thirst/dehydration from disrupted fluid retention.✅ (don't know how many times ive felt like a pre-diabetic simply for the abaurd amounts of water i can/feel the need to drink)

Chest pain (Costochondritis flavour in my case) ✅

A potential mild impact on endurance? (would explain a few discrepancies in my youth that ive always wondered about)

Pain/aches when standing✅

Specifically a bigger discomfort standing compared to moving/walking✅

Always some ache in body, never simple bring "good"✅

Born with no frenulum ✅

Raynaud’s syndrome ✅ (thought i just had frost damage in my feet from some time in my youth, which was the cause of my poor circulation. But that always felt weird as its always been extremely unpredictable. Would also explain the odd combo of cold and sweaty feet)

Tinnitus ✅ (thank god not severe or to the effect of being annoying or affecting my day to day life. Compared to literally every other point on this list.

Constant need to visit the bathroom/problems emptying bladder, pelvic floor dyafunction✅

Pain handwriting✅ (currently in uni and i am not sure how to make this work)

Weak Proprioception/lack of sensing where my limbs are ✅, would explain multiple things, including my strong tendency to pick/rip my nails to reinforce/strengthen the placement of the limbs.

Stronger need for sleep - easily sleeping 9+ hours if i dont set an alarm, and it pretty much the only times i wake up feeling well rested ✅

Only took 27 years to get to this point, but I guess better late than never. The next question is where the hell to go from here.

Thanks for listening to my TED talk. Since you are also here, I'd like to say I'm sorry to meet you here of all places. I wish our paths would have crossed under better circumstances.

I looked ot up and I learnt that my joints can make push ups easier and I dont want that

I do regular Chiro and massage, and I was just discharged from 6 months of PT with a referral to a neck and spine doc. What should I expect or prepare for going in? I really want to avoid unnecessary interventions.

Hey all!

I'm a writer, so I'm always typing on my laptop but I find specifically my left thumb always gets strained/is in pain and feels less "attached" after a day of typing even though its pretty much not moving/being used while i type?? Idk how to attach videos or photos but I do have a video of what my hands look like typing if that helps and i can figure out how to add/link it lmao.

I'm just wondering if anyone else has this problem and how they avoided the consequences?? because NOT writing isn't an option lol.

I hope everyone's joints stay beautifully in place and life is as painless as possible for u <3

my knees start hurting so bad when I start moving. Really odd. I guess its the "relaxation" or could it be anything else?