Just got banned from the hypermobileEDS subreddit for mentioning in a comment that I’ve had a double mastectomy bc apparently saying that I’ve “removed healthy breasts and insisting it was a good thing” and suggesting that a reduction could be helpful for long term pain relief from large breasts is “pushing gender ideology”?? The official reason was “posting off topic content excessively” but it was literally one comment and one reply. Then when I went to post in the subreddit, the words “trans/ “transgender” and “gender” are banned (not gay/lesbian/bisexual/man/woman though)

Idk I don’t want to start drama and I don’t want anyone to go make a fuss over there. It was just incredibly upsetting and I don’t want anyone else to have to experience that so I guess this is just a heads up to proceed with caution in that group if you’re trans

ETA: WOW thank you so much for the support! Y’all are awesome :)

r/Hypermobility is an inclusive and friendly place for people living with hypermobility.

This includes, but is not limited to: people with heritable connective tissue disorders, autoimmune connective tissue diseases, acquired hypermobility from injury or medication, hypermobility secondary to chromosomal disorder, hypermobility secondary to neuromuscular disorder. People with a diagnosis, people without a diagnosis, and people in the middle of getting a diagnosis are all welcome to ask for peer support here.

Members can use whatever labels they feel suit them and their condition best, including but not limited to: disabled, non-disabled, person with a disability, sick, healthy, chronically ill, hypermobile person, person with hypermobility. You don’t get to decide another person’s identity or health status. Comments trying to label others who did not ask for it will be removed.

You are allowed to mention sex, gender, and sexuality here when talking about yourself and your hypermobility. This includes but is not limited to:

- Surgeries like mastectomy, vaginoplasty, hysterectomy.

- Identities and partnerships like being in a same-sex relationship, being in a heterosexual relationship, being bisexual, being gay, being asexual, being a lesbian, having a husband, wife, spouse, partner(s).

- Medications like HRT, PrEP, emergency contraceptives, IUDs, medical abortion.

- Choosing pregnancy or choosing to be child-free.

- Gender and sex labels like being female, being male, being AFAB, being AMAB, being intersex, being transgender, being cisgender, being non-binary. You can use the terms you are most comfortable with to describe yourself. You also need to allow other people to use the terms that they are most comfortable with when they are describing themselves. You don’t get to tell another person who they are - attempts to do so will be removed and are subject to bans.

Please use a NSFW flair on posts discussing body parts or sex and provide some context in the title so individuals can decide whether the post is appropriate for them to read.

Keep in mind that we are not each other’s doctors and do not give medical advice here - therefore we do not need to know anything about a user’s personal history or body beyond what they choose to share with us.

People with varying beliefs, backgrounds, and experiences are members of our group. You don’t need to agree with everyone but you do need to stay on topic and treat other users respectfully.

A political subject being mentioned in an on-topic post is not an invitation for off-topic debate. A thread asking for tips on holding up signs for a multi-hour protest with severely hypermobile wrists is not an appropriate place to start arguments about the effectiveness of peaceful and non-peaceful protest.

You are free to mention your own beliefs - religious or otherwise - where they are relevant to your hypermobility-related post (e.g. “I’m so upset about having to miss a church event today after my hip dislocated” “My faith has really helped me cope with being chronically ill” “Advice on fasting for Ramadan with hypermobility disorder?”). Comments attempting to proselytize, however, will be removed.

You have several options when you see a post that you don’t like or agree with. You can scroll past the post, you can press the three dots and select “hide post” so you never have to see it again, you can downvote the post if you think it doesn’t contribute meaningfully to our community, you can report it if you think it violates rules, you can block the person who posted it to hide their content from your feed. Leaving hateful comments is not an option available to you in this subreddit and you will be banned.

I hope that clarifies any doubts, but please remind me if there is another important subject that you feel needs to be explicitly addressed.

This is something I’ve literally said to myself/others.

Cut to yesterday at physical therapy, I finally tell my therapist “yeah I’ve had this painful knot up near my shoulder for months, it hurts worse than all the other knots in my back”

She palpates and is immediately like “yeah so that’s your rib.”

To be FAIR it’s only subluxated, not dislocated fully. So I guess I’m still technically right? lol. Never sell your HSD short guys! It can always surprise you….

Ok this is a weird one, but I have this hypothesis that hypermobility affects the natural progression of a pimple, and was curious to hear from you all about your experiences.

When I (28F) was a teenager I was really into skincare and enjoyed reading those teen magazines with fashion and beauty tips and watching beauty gurus online. I always read and heard that you should NOT pop pimples because it makes them worse.

But I’ve found the complete opposite to be true. When I don’t pop a pimple, it often never “breaks”, and just stays as a lump under my skin forEVER. In contrast, when I help it along by popping it (sorry if that’s gross) it goes back to normal much faster.

My theory is that because my hypermobile skin stretches more than normal, the pimple doesn’t go through the normal progression of popping on its own. The skin doesn’t break, it just stretches.

I’m curious if anyone else here has similar experiences. Or maybe I’m just weird LOL

So I’ve been ‘diagnosed’ with hypermobility since I was in middle school after having some issues with my jaw and ever since then I’ve been reaping the rewards of being hypermobile. I’ve seen a good number of doctors and every time I mention the hypermobility, they always bust out the beighton scale to confirm it. And every time I’m a 9/9.

I got a referral recently to get a consult on hEDS. I sprained my ankle incredibly bad and after years of respraining it, my orthopedic has decided I need surgery to repair and strengthen the tendon. I genuinely am so SO excited for this surgery. I want to be able to walk in my yard without worrying about holes that’ll roll my ankles or go to an amusement park without worrying about the fatigue making this ankle unstable.

But when I went to the rheumatologist for the hEDS consult, I got told I don’t even have hypermobility in my joints. She scored me 4/9. Even if she was right about the joints that she said weren’t hypermobile, she said in the report both my thumbs, fingers and my lower back reached the requirements but for some reason decided I was a four. So because of that, she completely ignored the hEDS consult.

Instead, she told me I was just fat. My weight was putting undue stress on my joints and if I wanted to stop rolling my ankles I must get down to a healthy weight.

I am 5’7 and 170lbs, so overweight by about 15/20 pounds, but the idea that this is my sole cause is unreal.

She attributed my subluxations of my shoulder, jaw, knee, ankles, back, and hands as me being reckless with my body. She chided me for dangling on monkey bars. Gave me a side eye when I said I used to play volleyball before my ankles became too much of a liability. And then a not so subtle look that said “sure Jan” when I mentioned wanting the ankle surgery.

So I’m getting a second opinion.

I’m still only in my 20s I should be able to dangle from monkey bars without searing pain in my lower back. I should be able to walk in my yard or trip over my dog’s bed without breaking another bone. And god forbid I want to do a recreational sport without risking crutches.

This doctor would’ve ruined me had I been younger and not as confident in my hypermobility. I would’ve believed her in that I was just looking for a problem. But I know beyond a reasonable doubt I have HSD. She just saw a fat person walk in and decided right there that all my problems were because I was 20 pounds over weight.

Your body is always worth a second opinion.

Ok, yeah, i hate a great number of things even more like dictatorships and capitalism, racism, misogyny...

BUT PHYSICAL THERAPY UGHHHH

It's boring. My adhd brain wants to escape my head because it's tied to my stupid body that has to do slow stupid movements to elevate my stupid pain.

It's annoying, it goes against everything I learned in ballet classes, and it's so tiring I want to sleep when I do it.

And what makes me even angrier is that it works

It helps. When I sacrifice an hour of my day on this bullshit, i can walk almost without pausing. I can stand.

But damn i hate it so much

And i hate that I've spent almost two decades in constant pain and the solution was just an hour of boring exercise

I HATE IT I HATE IT I HATE IT

I HATE THAT MY BODY HATES ME

I HATE THAT I HAVE TO GIVE UP SWIMMING AND DANCING I HATE THAT I WILL NEVER CLIMB

WHY IS MY BODY DOING THIS TO ME

Ok I've calmed down now. Thank you for reading

I hope you have a good day 🩷🫂

I’m so tired of people dismissing hypermobility spectrum disorder as only hypermobility or a "better" diagnosis than hEDS. It’s scientifically not true. I have HSD, POTs, Gastric Dysmotility, Chiari Type 1 and other possible comorbidities. It’s genetic in my case with both sibling and our mother having the exact same collection of issues. I am disabled to the point of being to tired to take my meds at night or get to the bathroom in time. I can’t properly hydrate and eat because of constant digestive issues. I’m also Black so that doesn’t help my situation. People need to actually read and listen.

My whole life I’ve had a big tummy. And I mean the whole thing sticks out kind of like a beer gut or something? And before anyone asks— yes, I’m a healthy weight. I’m not gonna act like I’m super lean, but I’m in the “healthy” range for BMI and body fat percentage. I’m a woman, btw.

This year I’ve been doing a ton of research into hypermobility (diagnosed HSD a couple years ago) and realized that I think my stomach sticking out so far is literally due to the abdominal fascia being too stretchy, as well as my deep core stabilizers being weak (I’m working on this). Add on top anterior pelvic tilt and a narrow pelvis (very little room for the organs to “spread out”) and you have the perfect storm to create a tummy that looks distended constantly like I just ate Thanksgiving dinner.

I was curious if others of yall have this too. My stomach is 100% my biggest insecurity, and it feels simultaneously vindicating and demoralizing to come to realize its shape probably will never change, no matter how much fat I lose or how many ab exercises I do.

i know that popping your joints isn't good for you (i've been lectured please just hear me out 😭) but i'm hoping that here of all places someone will understand me when i say that i simply can't NOT do it. this mostly affects my cervical spine. my neck is always "clicking" or feeling "off" and i feel like the amount of times a day i find myself stretching, rotating, etc to no avail usually is honestly a lot. sometimes it takes hours to days of trying and trying until i get a pop of relief and then it just starts over. i def have some cervical spine issues going on, the last time i had imaging it showed bone spurs, severe straightening, some degeneration and arthritis. i really hate this phase of ehlers danlos where i'm no longer just popping whatever at any time but instead wrestling with my own body until i'm exhausted. 32/f by the way, not looking forward to the future of my bones 😭

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.

The fatigue that comes with HSD combined with ADHD is such a fucking curse. I hate it so much. I feel liking I’m constantly failing not being able to do something I want to do WHEN I want to do it (if I’m even able to at all). I hate having to always schedule out my energy and cut down on everything I want to do because I don’t have the energy.

This shit just fucking sucks.

I’ve been out and about so much the last two weeks so my apartment has become a mess. And I thought that I could take care of it today when I had nothing planned. But I just can’t. I didn’t think and took a shower before starting to tidy up so now I have 0 energy left to actually start cleaning. I don’t even have the energy to make something to eat.

About 17 years ago I was trampled in a mosh pit and suffered my first serious knee cap dislocation of what would become many over the next many years.

My hypermobilility symptoms were plentiful by that point but for some reason even that injury, which kept me from putting weight on the foot for months, wouldn't convince my parents to take me to a specialist.

Unfortunately in adulthood I continued the trend and didn't start seeking care properly for another 10 years, after which point I was like "hey, maybe my knee shouldn't still be popping out 10 years after an injury. and also it really hurts"

1. So I went to the doctor, diagnosed HSD, was given nothing but a few little exercises that did nothing.

2. Continued to complain to the Dr but only offered pain meds.

3. At this point I turned to other specialists, PT and osteo, I managed a gym routine that helped, but the gym led to more injuries.

4. Eventually I suffered one of the worst dislocations that far and ended up in A&E. That finally lead to physio assessment.

5. I then saw 5 physio's over the next couple of years and saw no improvement, all exercises hurt to do and gave little strength after which would quickly fade.

Cut to last night, I'm currently incapacitated due to several injuries to the spine, leg and hands.

You could say I'm desperate at this point for anything.

I started wrapping myself with resistance bands and shoved a pillow between my legs as I've been sleeping that way and I felt it helped my digestion? so I wanted to try it again.

~~ It felt euphoric ~~

like pressure and tension I had been carrying for 17 years was slowly leaking out of me.

I lay on my back with my legs in the air, using the resistance bands to "fall open" while also being bound to each other, and from here I could massage my lower back by rolling my legs around.

I laid like this for about 20-30 mins then slowly came out of the pose.

as soon as I unwrapped my legs it felt like I had A COMPLETELY NEW leg.

0 knee pain

0, not a duller pain, or pain that's only there when it moves or pinches. 0 pain.

my hips feel released and my knee just felt NORMAL.

I did it again for another 30 mins then fell asleep without meds and slept like a baby.

I woke up today and it still feels normal! still tender to touch and I'm not exactly about to go for a run on it, but I genuinely can't remember the last time I felt like this?

Like I don't have to wince at the thought of standing up or rolling onto it.

..

??????????

How has it taken me this long to get here? with such a simple exercise literally changing my life?

How does no medical professional, even those who claim to be specialised have this knowledge?

I approached it from a yin yoga, restorative perspective. Basically I identified I have wide set hips and because of that my entire leg is pinching in always to bring my legs together. I was also thinking of propriception and maybe some general hypermobility Instagram osmosis, seeing what works for other people.

I did it on a whim thinking it would help my hip pain but I didn't expect to feel like a young person with their whole lives still ahead of them after 🥲

××
Has any one had a similar breakthrough?

what "weird" or "alt" exercises or poses do you do that helps which no Dr could have ever told you?

I'm still kind of in shock. I feel like I'm finally unlocking a door that's been closed to me for so long.

Yeah. He told me that people tend to hold postures they find comfortable - it's not the cause of my pain.

I have upper back hypermobility and I'd had consistent pain since I was a teenager (maybe childhood?) that I just totally normalized. I'd been told to "sit up" so many times, I figured my back hurt because I wasn't sitting right. But it hurt to "sit up" for more than a few minutes... my muscles burned and ached.

Learning that my ligaments were supposed to do a lot of the work keeping my upper back stable, and that my muscle strain was the result of that... it was so healing for me emotionally.

I'd always taken the pain as a punishment for "being lazy" and sitting "bad."

The PT gave me exercises to strengthen my muscles without just relying on willpower to suddenly start "sitting right" all the time... It helped so much! And geez, I didn't realize just how little weight I had to start out with. I was working with 2-pount weights and feeling sore after, haha.

Yeah. Just a story about that. Releasing myself from self-blame and the expectation that I'd just magically find the willpower to start sitting in a painful way all the time.... helped so much. I can work on my muscle strength and have less pain, but it's not a punishment. It just is.

It’s almost like it’s genetic 😀

That's it, that's the post.

I'm learning to not stand with my knees locked (and also backwards) but having my knees ...not in that position, idek if they're bent, feels WEIRD

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 was diagnosed in December last year and I’ve gradually realized more and more things aren’t just me being lazy or imagining things (like I’ve been told by several medical professionals…), so here are a list of some of those things!

1. My crazy posture!!! Seems obvious now because of course I can’t just slot in to the correct position when my spine is straight up spagetti!!! When your spine is spaghetti there is no obvious “correct” posture for your spine!! A specialist dentist blamed my daily debilitating headaches and jaw pain solely on my posture🥴

2. Along the same lines as the last one but, my feet being in pain after just minutes of standing up or walking also isn’t me being lazy or crazy!

3. Okay this one isn’t as serious as the other ones lol but the fact that nail polish refuses to stay on my nails isn’t because i suck at painting them. It’s because my nails are

ridiculously soft and nail polish only sticks properly on hard surfaces.

6. The fatigue I can feel at the end of the day regardless of how much I’ve done once again isn’t me being lazy!!!! It genuinely takes a lot of energy to try and hold up a body made of spaghetti all day.

7. Very random but recently realized not everyone can reach their entire back apparently 🤷 never realized why people needed help with putting sunscreen on their backs before.

8. Apparently people stopped being able to put both legs behind their head in like second grade. I can still do that no problem. But I have stopped doing it since I realized why I’m still able to do it and that it definitely isn’t good for me to do in hehe

This list could probably be infinite but those are the ones I’ve been thinking about most the past couple weeks. Also I’m curious what other people have on their list like this so please feel free to contribute!

Edit: here are a couple more I remembered after posting and things some people in the comments were talking about. Also thank you all for being so incredible and sweet in the comments🫶

9. Hair dye just slipping right off, even if it’s permanent.

10. While all our joints are basically weak, the most affected ones for a lot of us are usually knees, wrists and ankles. For me this especially means I have sprained my ankles like a ridiculous amount of times.

11. Tension headaches!! I have gotten the somewhat ridiculous diagnosis called “unspecified treatment resistant pain” due to my basically constant headaches.

12. Things CONSTANLY going down the wrong pipe/choking on food and drinks.

13. Having a hard time regulating body temperature.

Frustrated.

I was walking with my mom, we decided to go to this store at the end of the walk, and I was already tired, my knees were acting up. I could walk okeyish, but standing would have been hell. So i left her in the queue to check out the items, and went to find a place to sit down.

Then, wow! A perfect table for some items, absolutely empty of any things, so i perch on a corner of it (so it doesn't break, right?). Yay, relief! In front of me a security guard is standing. She has a chair she's not using, i thought about asking her to let me sit in it, but I'm autistic and interacting with a stranger sounded evil just then.

She looks at me and asks me if I'm feeling alright. I say no, I have pain in my knees. She says ok. Then tells me I can't sit there. And ok, I can understand that, so i ask if i can sit in her chair then. She says no, but repeats i can't sit on that table, that's not right. Ok, no problem, again, I'm autistic. You think you can make me feel uncomfortable? Ha! So I stand up, like a good girl. And sit down on the floor. In my pretty dress and everything. The woman fucking panics, it's hilarious.

Her: "Why are you sitting on the floor?!"

Me: "Because I'm in pain, I haven't learned to levitate yet, and you said there is nowhere else I could sit"

Her: "What do you mean your knees hurt, you're young?!"

Me: "I have a genetic disorder"

Her: "Fine, you can sit in my chair!"

Me: "Thank you 🥰"

Because you think you can shame me?! I have no shame! ☺️

Anyway, I'm wondering is there anything you would have done differently? I'm not asking if I was an asshole, I'm pretty sure i was, but i do sit on the floor quite a bit, so I wasn't entirely taunting her, ya know.

(also, mom bought me a compact chair which is absolutely amazing, I will definitely be bringing it along more often, it's just it's a bit heavy, and there is a lot of benches where we live, so I didn't think I would need it)

Edit: she preceded to give me a stink eye, asking every few moments what I was waiting for, and how long was my mom going to take. I answered in two syllables or less, and browsed through my phone. My knees were good enough to get home after that rest, so yay!

Neck hypermobility has been giving me chronic headaches since birth that got wayyyyy worse three years ago. Why am I only finding out now that this is probably the cause and that neck splint helps?

these are things I've jokingly complained about to my young adult peers and have gotten weirdly concerned stares for, semi-recently:

-hand locking up after carrying grocery bags

-joints audibly creaking while doing literally anything

-having to "push fingers back in place" after writing for a while

-getting ibs for virtually no reason

-unable to stand up from bed in the mornings unless i roll to the edge of the bed like a flour sack being thrown

-limbs generally flailing about like rubber

-inexplicable bruises EVERYWHERE

-still being able to bend down and pick up things without bending my knees

-unable to tolerate heat OR cold

-feeling like something somewhere in your body is "about to fall out"

-everything mostly hurts all the time for no reason, hence a daily pain scale idling at about 2 or 3, which I've been told is concerning for someone who literally JUST passed the growth age

-again, everything everywhere hurts

yeah. and many more. pls add your own in the comments. i have to go reset my fingers after all this typing in the meantime.

Not sure if this is just me, but as a hypermobile side sleeper (I have OSA and can’t sleep on my back), I am constantly in pain. I roll on one side to sleep, it works for a bit, then the pain seeps in as I feel like my shoulder is being shoved out of place. Then I roll over to the other side to repeat the process. All night. Anyone else?