r/Hypermobility

Hi everyone! I'm 22 years old and decided to write this post because people usually only post when things are going bad, but once they get better, they just move on and live their lives.

​Since December, my condition had been getting worse. Two months ago, I was experiencing widespread joint pain, much stronger than anything I had ever felt in my entire life. I thought I wouldn't be able to go to college, date, get married, travel, work... Anyway, I thought I had no future. I couldn't even stay still without being in pain. I was doing Pilates and it seemed to help for a while, but I had to take a bus trip when I was feeling a bit better and ended up getting a lot worse on the way back. It was awful!

​I decided to stop Pilates and started weight training supervised by a physical therapist, and I feel better and better every day. I guess Pilates wasn't a good strategy for my case (and yes, I did mention my hypermobility to the Pilates instructor, we were doing clinical Pilates).

​It's been three weeks since I've felt almost no pain, and I'm so happy. I still have some health issues to figure out (gastrointestinal problems), but I feel like everything is going to be fine. Wishing you all the best!

​This is a message for anyone who has lost hope.

Remembering that time I went to the doctor as a kid with a whole list of symptoms and she said "the more symptoms you have the more likely it's nothing."

Anyway they were all hypermobility. F you Janice.

Not trying to sell anything!!!

Just wondering if there's people out there who workout frequently and have tips and advice to share, those who are brand new and afraid/intimidated for whatever reason, and anyone in between. Could just be a casual space to share experiences, recommendations, motivation, ask questions, etc.

I personally have a somewhat milder manifestation of hypermobility, so it gets in my way a lot but not enough for other people (including coaches) to notice or take seriously. So I've always felt a lack of community or understanding around it. I teach fitness classes and workout a lot, so it's something I've mostly had to trial and error over the years and figure out without much help.

EDIT:

DM me for the discord! I'm not super comfortable with discord, so if anything is askew please let me know!

I don't feel safe in my body anymore. I'm so hypervigilant of my movements now and it feels like it's all a gigantic ticking time bomb.

I honestly wish there was better data on the prevalence of hypermobility and the actual risks of developing chronic severe pain, so I could 1) feel less alone and 2) have more of an idea about how much I SHOULD be worrying.

It's always hard trying to plan for my future as I don't know what kinds of jobs are sustainable for me to keep and if I can build a career in it. My field is in landscape architecture which I freelance in along with graphic design and social media management but the freelance nature of it means sometimes my clients/boss ghosts me and I can't rely on them.

I also work as a pilates instructor but I can't quite increase my hours as I simply do not have the energy for it. Long periods of time at the computer tend to create energy crash outs and extreme soreness in the neck and shoulders. Has anyone else found a good balance to working with eds and what jobs have you found that help support your physical needs?

For patients with Hypermobility syndrome, and osteoporosis - reduced muscular tone (the type of tone one gets in the body when they reduce their weight multiple times without doing muscle toning exercise - ALSO WHAT IS A WORD FOR THAT?)

WHAT KIND Of APPROACH can be used to strengthen these patients.

This community is great and I’ve finally found out I’m not a weirdo and I’m not alone. I’ve learned so much here!

I find a lot of pictures online of extreme examples of hypermobility features (stretchy skin, specific joints) but no reference pictures of “normal”.

My doctor is newish to me (last fall) and I’d like to ask her for a referral to a specialist who can diagnose and offer support surrounding hypermobility. She’s not going to take me seriously if I use FB reels as reference material and I can’t blame her for that.

She referred me to physical therapy for my shoulders and wrote the diagnosis as “hypermobility of joint” without my ever using the word. (Was doing the party trucks with them as a kid.) So that’s a good first step. But I’d like to talk with her about how this is systemic and give examples of what is outside of “normal” but I’m not sure.

I think my fingers are hypermobile but I don’t know. The small joints bend back but not as extreme as many of the Google pictures I see. Same with my knees. They don’t hyperextend backwards but they feel unstable and I’ve locked them while standing and walking for my entire life, not knowing that this isn’t typical. There are other joints that are questionable (including a foot surgery) and I have pain in all joints, as well as gastrointestinal and gynecological conditions, and ADHD.

As a 53yo female in the US I’m unfortunately in that demographic that’s easily written off as “middle-aged lady complaining about aging” but my symptoms are lifelong.

If anyone has recommendations about how to approach this or for resources for data, I’d be grateful. Also I wonder if I should wait for the new diagnostic criteria to be published at the end of 2026?

The EDS clinic (the only place near me that can diagnose HSD/hEDS and the only place where I can get genetic testing) updated their referral requirements RIGHT as my doctor sent in my referral. I now I have to use an app that uses my camera and AI measures if my joints pass the beighton scale. I have already been confirmed by 3 medical professionals that my score is 7/9, but I have to use the app and use the pdf of the results in the referral, and a negative score will have your referral rejected I believe. You can only retake your beighton scale with the app once a year. I haven't used it yet as I was just told about it today, but I'm really worried about getting a false negative beighton score which contradicts the opinion of a nurse practitioner, a physiotherapist, and a rheumatologist. I'm worried as my body is chubby and therefore some joints may appear less hypermobile to the untrained eye (which I'm guessing AI is measuring the angle of the exterior body and not where the bone/joint is supposed to be).

Anyone else in a similar boat, know what's going on, or how to override this/complain about it to get it changed? The app is great for people who can't get a doctor to test the beighton scale for them, but when the app is mandatory it seems a bit stupid.

I’m not totally understanding subluxation. I know what it is, but not sure how to know if it happens. I’m in my 40s so a lot of my issues have just always been dismissed as having a “funky” knee or something.

Sometimes my joints get “stuck” or just give out. Like my knee will suddenly feel loose and like it can’t bear weight with confidence (usually works enough to walk but with care) or I suddenly just can’t move a finger properly, it won’t work. My hip is probably the most obvious, I can definitely feel it out of place and I will have to roll my hip to “pop” it back in to walk.

So the hip seems most accurate to my understanding of subluxation but not sure if the loose or unstable joints also qualify. Do you always have to actually pop them back?

Still learning about myself here lol.

Thank you!

I started to feel better after my new PT gave me 3 tips. I also figured out a few things recently about my body and I am 50 years old, 4 mounths total hip replacement post op.

This is not medical advice, and I
Am not a medical professional or dr.

So I am realizing we all have ballet bodies and in fact we must realize we are meant to move like graceful swans! We are not like other bodies and faces straight forward doesn’t work for our joints and muscles. Most Physical therapists work with f@straight forward muscles or joints . Ours need to be facing outwards or inwards slightly and that’s when glutes and quads will want to kick in. My physical therapist also told me to breath in with my diaphragm not belly. Also when I bend down to pick up stuff I need to exhale and do butt to imaginary wall. It helps with low back pain, glued kick in, low abs kick in by exhaling like a cough.

We also must alongate. Wherever we reach our head or upper back must look that way. Like a graceful ballet dancer.

I did an hour long zumba high cardio class with all these tips, wasn’t in pain for my very first time. Also squats are not for me, I do better with bridge and a band. Probably because quads are slightly rotated outward. Biceps, no lifting straight forward, wrist faces slightly outward or inward, depending what HSD is affecting in your body. My left first rib was higher, adjusted that. I think it keeps wanting to go back up. Lol. You will notice what feels good, but working your muscles is mandatory, so our joints stay happy and healthy.

Anxiety is still there, but I am still working on it. Let you know when I figure it out!!

Remember “I am a ballet dancer” Should be going through your mind all day.

I am apologizing to my body now for not figuring it out earlier.

Better late than never.

CPR training is a compulsory part of my job and we need to do 2 minutes on an adult mannequin and 2 on an infant. Every year I'm in so much pain (especially the fingers with infants and I have tried using my knuckles).

Has anyone else got any tips on how to make it more comfortable? I'm thinking of taping all my joints tomorrow.

My shoulder started subluxating frequently about a week ago. Up until now, it has only really happened unexpectedly a few times, and they were never painful.

When I was a kid, I used to sublux my shoulders as a party trick. I'm now realizing that I've been subconsciously pushing my shoulder out to do daily tasks. I know this now because it's causing me pain whenever I do it. Reaching for something in bed, picking up laundry, stretching.

It's it normal for it to progress like this? Painless until it's not?

It's the solution always surgery? I would love to stabilize it some other way if possible. I had a baby last year and I don't want to have to recover from a surgery while having to care for an infant.

Sorry for the rambling... I'm feeling pretty down and I'm not organizing my thoughts well.

How do you guys exercise? I've already stopped running and swimming because they causes hip and shoulder subluxations. Would love a group or team activity I can do on a weeknight!

Today it's felt like my body has had a really bad day. Things that don't normally hurt are hurting and popping and causing problems. I kinda thought since figuring out that it's hypermobility, which is constantly present in me, that would mean that, even if it's bad, it should be relatively equally bad all the time. Does anyone else have days that just seem worse? Is there any reason for some days to randomly be worse than others?

I'm wondering if anyone else has this experience and what they do about it?

I have woken up in the middle of the night so many times in excruciating pain because a body part has gone numb. I'm not talking a little tingly sensation, I mean that (for instance) my knee will be completely numb; I cannot feel it at all, and it hurts so much to even exist for a few minutes until it has woken up again. Interestingly enough, my calf and foot will feel completely normal. I don't usually sleep in crazy positions. This happens most often to both my knees, both arms and hands, lower back, and the back of my skull.

I think they occur most when I am lying flat on my back, but when I lay on a side, then my organs seem to think they can go MIA. Finding comfort while sleeping has been a challenge. When I wake up it's like I have to put my body back together because it is positioned a little funny. I feel like if I were pinching a nerve my feet and calf would also be numb? I am very hypermobile, so I wonder if my numbness is a symptom of it.

So, what do you do/would you try? Pillows? Props? A better mattress?

In case it means anything, I don't sleep with a pillow under my head for comfort reasons. While I haven't been officially diagnosed with anything, I am freakishly hypermobile and am seeking a hypermobile Ehlers Danlos diagnosis.

(Sorry for my bad English) So I got a recommendation for a physio therapist because of my top surgery and I asked them on the phone if they also know about the hypermobility spectrum disorder, and they said „yeah basically yes“ so we had our first appointment and I wanted to tell about it because I kinda always knew I have this body but I just got aware it is a condition that affects a lot of things and can explain part of my chronical pain, digestion issues and bad posture.
I kinda spaced out so I can’t tell you exactly what they said, I just remember they touched my skin at my arm to see how it is stretching and said this is not so stretchy so I can’t have it (said it quiet indirect) and we just have to work on my posture. Just some days before I talked with my neurologist about it who encouraged me to go with the diagnose and said my skin at my neck looks really stretchy.
Because the physio therapist said it so unclear I feel weird because I don’t know if they actually denied my diagnoses. Since I know about the term I am super clear that I have it, there are so many things: digestive issues, my nose can be pressed in, i have the 90* thumb, I am flexible without stretching work, digestive issues, moving knees, instabile joints (especially anchle, so I fall down sometimes even with comfy shoes),waking up from numbness, neck pain, back feels like rubber that I have to put a lot of conscious work to stand still, I hate standing (feet hurt)…
I just don’t have super bendy skin and don’t get blue spots intensively (maybe it was the case before I had 400 tattoos) .
I have a big issues how to get support from therapists and doctors and this time I feel I am really feeling it is something that makes so much sense but there are so many different ways to have hypermobility? I am so tired / chronically fatigued that it is a big struggle to educate myself and find the right support, so I wanted to share to you and hope you can give me some advice how to handle my therapist situation and how to find the support I need, I am getting old and having less resources because I overworked because I thought one day it’s getting better and gaslit myself about my pain 😭

I just said a few days ago I wanted to stay positive and move forward without dealing with past problems involving public perception of hEDS and POTs. I’m feeling a little cranky because my left clavicle is currently trying to get loose and my hip is a bit loosey goosey too. But that aside, I was thinking all was well with the world so to speak.

But a family member mentioned that I’ve got a variety of problems due to my connective tissue condition. She was seeking comfort and or minor advice?

Anyway, the person she spoke with prophesied that she has ALS and that’s why I have hyper mobility problems. And that if she doesn’t believe enough she’ll die, because ALS is fatal. Or at least that is what she thinks they meant. She’s also insecure about whether she believes hard enough just to be faithful as it is.

(Please bear with me, I know how that sounds in more secular circles and grounded-faith communities.)

She does have ALS-like symptoms due to unrelated health problems, including slurred speech/life long impediment.

I’ve got a lot of symptoms due to hypermobility that would easily be mistaken for a nerve degenerative disease. My worsening stretchy joints and subfluxations make it seem degenerative.

So apparently I’m now at fault for her being bullied. Or at least her perception of bullying. She’s older than me and should be able to handle this sort of thing. But I know I’m mean, if I just ignore it. I don’t really know how to address this matter maturely?

She means so much to me. And I’m a person of faith too. But like, uh, I don’t have ALS. She doesn’t have ALS. I hope it blows over, but she’s made it clear she wants to either retaliate or avoid this person or do something else.

And I didn’t start this. I’m just trying to survive. I didn’t have anything useful to say, except like… there’s other people to make friends with besides that one. Even though apparently they’re involved in an evangelism course she really likes.

Honestly, I guess forgiveness, not fixating, or finding others when all else fails, is how she ought to go. But between the two, I unfortunately figured there’d be a sort of problem/incompatibility. I just figured they’d work it out (without making it “my fault”).

Though this person does seem like the sort that also expects her life long health problems to vanish if she has enough faith… she’s going to be very upset/guilty if that doesn’t happen either, possibly (again).

This is dumb, but if you have advice that’d be great? Sorry this isn’t even about my hypermobility per se.

I personally feel like I’m “me” for a reason. It’s not a personal failure (unless I’m not exercising wisely or did something “too” hard and dislocated something.)

She on the other hand, I don’t know? I don’t understand the necessity to seek validation by them at this point? I personally wanted to be accepted “as is”. But I don’t know what she wants from this drama that’s started? Or if there’s anything to do but hope it fizzles out in a couple days and doesn’t turn into something more (past drama never ended well though).

Also, if you’re that person I’m crypticly referring too. I’m sorry. I figure you tried to help in your fashion and while I do not agree and do not condone the reckless diagnosis of fatal conditions; I’m not going to advocate retaliation against you either.

I’ll try to keep this brief. I’m 53 male in the UK. Hypermobility diagnosed with a score of 6, apparently mostly in the entire spine and knees. For various reasons over the last five years I’ve become quite deconditioned as well. Plus I’m autistic. Ive had issues my whole life but nothing that troublesome. The last few years though… wow. My upper back is just a trash fire. Theres clearly a big knot just to the right of the spine by the shoulder blade, but have a frequent aching or burning between the blades. Also lower mid back, around the lower ribs / diaphragm area frequently aches or burns and sometimes make me fail faintly nauseated. Also, seem to have a weird trapped gas thing (oesophageal I think) which increases the back pain I til it’s relieved by burping.
Anyway… the current state is that almost anything, the slightest wrong move is wrecking the thing. For instance yesterday it was all very stiff so stupidly did a brief child’s pose kind of stretch. Today… upper back is in pieces and also pain through my left glute (another frequent issue) Ive been to multiple physios, osteopaths, GPs, acupuncture, you name it, and it’s either done nothing or made everything temporarily
worse. So yeah… just don’t know what to do? Can anyone relate or have any advice? Just fyi.. it’s all definitely mechanical, not visceral.

Edit: no you can’t (tone sounds really angry I don’t mean it like that). How do I go about voicing my concerns when both my primary care doctor and my parents think it’s perfectly normal to have these things.
PEOPLE I CANT EDIT THE TITLE IM SORRY DON’T BUG ME IN THE REPLIES I GET IT. Jesus. It’s not like I’m going around telling people I have issues, most people around me have zero clue and just think I’m double jointed or something shit. Most people don’t flaunt their issues for funsies

I have a 7/9 on the Beighton test, I also have a very flexible fingers, trachea, neck, and hips along with joint pain, fatigue, tension headaches, and subluxations (mostly hip). Oh and I sound like rice crispy treats crunching all the time.

My pain is pretty mild most of the time (though it flares up) and I can function in day to day life, just specific activities are difficult. For example, it’s uncomfortable for me to write because the no matter how I hold my pencil my fingers are being over extended. I’m 18 so I can’t really go to a doctor and get help about it cuz I’ll sound crazy.

I’ve been to American bone and joint after I dislocated my shoulder the first time and the guy was basically like “yeah your lucky you didn’t break your arm, your hypermobility let it just dislocate instead of snapping” but I didn’t get any diagnosis ofc cuz it wasn’t about the overall symptoms.

I just feel kinda invalid being in hypermobile spaces w/o a label. I’m not even diagnosed hypermobile and my symptoms aren’t connected to anything. But then HSD exists and it matches a lot of issues I have,,, aghhhhh idk

I didn’t find out I have hyper-mobility until I was 32, and wasn’t diagnosed with EDS until 34.

I was born with something called clicky hips. I did see a Dr for it and I had limited treatment for it as a baby.
When I was 3 I apparently walked with a limp for several months but the Dr couldn’t figure it out so my mother decided I was being dramatic. She would always say how good an actress I was because I kept up this ‘fake’ limp for months.

I had a lot of pains in my joints, that my mother did end up taking me to the GP for, but the GP just said it was growing pains and recommended ice and some leg raises.

I was really clumsy, fell over a lot, frequently fell downstairs, or just tripped over nothing.

Weak bladder from a young age. My mother thought I was just lazy about not going to the bathroom.

I was just also generally pretty stretchy during sports.

What signs did you have during childhood that you were hyper mobile?

Hey friends. I always had bad bad growing pains in my shins as a kid, and now my poor kid has them too. Now I know that growing pains are NOT normal and related to our hypermobility, but there's also not a lot of information on relief. I asked his doctor and all I really got was give him magnesium, acetaminophen for the pain, and a weighted blanket will help. We do all these things, but he still complains of them about once a week. Pain meds do help, but is there really nothing else to do for them?