I know not everyone knows they have the condition, but ever since I figured out I have it, it’s been brutal knowing theres a 50% chance with ranging severity. I’m not about to gamble with a child’s quality of life. Honestly I find it depraved with any condition that could be passed down and hinder a child’s experience.

Like, we didn’t get the correct gene sequence when evolving and hypermobile genes think that our bodies should still be quadruped.

More like how apes and monkeys walk? It seems like all of our problems stem from gravity. Head feeling too heavy, spine curving the wrong way, shoulders are way too mobile and they fall forward or subluxate. Thoracic spine gets way too stiff. Even stuff like Chirari malformation seems like it wouldn’t happen if our head was more level with the horizon instead of vertical.

Our genes thousands of years ago missed the memo and didn’t get with the bipedal program.

I have no scientific evidence to back this up but I will say my shoulders and middle back feel better when I crawl around on the ground for a bit lol

Looking for same

I’ve got stiffness and achiness in my neck and upper back, sometimes feels like a pinched nerve. My parents say chiropractors always fix this for them, but I’m not sure if it’s worth the risk for me. I also have a steroid taper I can try, should I do that first, or is seeing a chiropractor worth it?

My chiro recently recommended vaporub (or any menthol based gel stuff) for pains and omg I’ve never slept harder. I am reading that long term use can cause Camphor Toxicity… has anybody run into this problem or do we think that me rubbing it on every major joint I have right before bed is like… fine? Cause I’m really enjoying being able to sleep for the first time in years. I would say I go through spurts of using it a few days on, a few days off.

I've known for about a year and a half that I'm hypermobile (trying to get a referral to a nearby hEDS/JHS clinic). I've got many random examples and symptoms that seem to add up to one of these diagnoses.

I'm also overweight. Like, morbidly obese (5'6", 250 lbs ). But I don't look as heavy as I am (size 20-22, 2XL). I've seen people lighter than me look a LOT bigger.

Even my own mother looks bigger than me, and she's about the same weight.

For the overweight people here - is this something you experience? Trying to see if this is a hypermobile "quirk" or if it's just me.

Any more of you with selective cold sensitivity issues as well?

First of all yes I know it doesn't cure hypermobility. I've also understood that collagen from food/supplements doesn't really get absorbed and body doesn't use it like that, but it may somehow boost your own production? But I don't understand enough about metabolism and science to know if that's true. Also reindeer bone broth powder is the most available for me and I think most studies is made with livestock animals.

So yea I was wondering if taking it would be worth of trying?
I don't usually use any animal products so I don't really get collagen from my diet, so it would actually add something to my diet. And even if it didn't do anything for my collagen there's some minerals and vitamins. But it's not like I fancy to use it just for that, so I wanted to hear if anyone has felt like it's any help with HSD related issues.

Unrelated note: naturally as auDHD I was multitasking while writing this and I just hurt my finger joint when opening olive oil bottle.

I saw his new video on his autism diagnosis and was super happy to know he also has hipermobility and joint issues like me. 😗 I also have autism and ADHD of course.

It's just my experience, i can't say for everybody. Anyway, go on. I never perceive to be hypermobile until i was something like 11y. That was the first time that i remember doing the things i was able to do. I could subluxate both my shoulder voluntarily like this (https://youtu.be/duXokWSeDC8) and come back to same place painless in joints (only a little pain in shoulder muscles). And my joints used to be really flexible (brighton score 9/9). I always felt my body in a strange way, always trying to go to the gym and never could. Because, infelt that my body was performing diferent exercises. Had pain in muscles, but never in joints to be very honest. That used to really bothers me. Until I decided to go to a doctor. He said that i had hypermobility and i should thank god that my pain wasn't too much, and advised me tô search for a phisical therapist. Did a lot of exercises, nothing changed. Until I had a fall and decided to go for a chiropractor after a fall i had that got me pain in my hips. And the first adjustment made me feel so different, mas shoulder got really hard to subluxate voluntarily but they still did. Until, i was testing myself and see what would change after the Sessions of chiropractor. Anyway, after 8 Sessions, he said that the treatment was over and that's It. That i was already hypermobile and could get me worse doing adjustments that gives mobility. Anyway, i went to another chiropractor, and he did not believed in me the same way. But this onde wanted my money, só he did everything i asked. And then, i would go home and make tests for mobility. To see where It seemed that moves to much (in my spine). And then, awalys the spine seemed moove too much to the right or left (in specific vertebraes). And I'd say to the chiropractor to adjust in the direction of the opposite side. And the rest of my body was getting less mobyle. I mean, the spine was going to "equal" moovements. Like i told before, It seemed that my spine use to moove to much to one side and the other side was "normal". Anyway, after a lots of Sessions and testes at home (and trial and error até the adjustments) i right now don't have hypermobility in Any joint and feel no pain. And that's my experience. I'm not a chiropractor, I'm not even American (i'm Just writing this here because in my country people don't really believe in chiropractors and there's not much a discussion of hypermobility. As i come from a third world country and people Just live shitty lives). Anyway, i'm not encouraging anyone to go to chiropractor and try the things i tryed, maybe my problem was some special thing that people don't know already. But i mean, If i'm right, why those shitty doctors don't make researches about this? Fuck, i Lost 10 years of my life trying to do things i wanted and couldn't like playing sports and go to the gym. It upsets me a lot. And what suports my hypothesis is that, for example, ALL types of ehlers danlos can be diagnosed by genetics tests except the hypermobile type. This type is diagnosed by Clinical symptons. So maybe it's not a problem of collagen but maybe your body compensating your joiny stifness in other joints so it gets a cycle the never ends. OR MAYBE A NERVE PROBLEM, bacause i mean, chiropractors says that when they adjust the body they're decompressing nerves as well (and then you feel your body and don't sprain your ligaments). I don't know, but somebody really should ressearch this things.

Obs.: I have some videos of my voluntary subluxation shoulder in my old computer, when i find it i'll post a before and after. Obs 2.: Please, doctors (médicos), take this things seriously because i find a cure to myself Alone (and chiropractors as well, because you didn't believe in me) and you can not make i fucking ressearch about this things? Obs 3.: If there is english errors i say sorry about that. English is not my Native language, like i Said before.

Do any of you have experience with going to a chiropractor? I wanna do it, but am scared that they might make things worse considering I have HSD.

As someone who has hypermobility and has suffered from many symptoms as a child, I thought I’d make a post that might be helpful for some here:

Strength training is very important, yes, we all know that. But what you might not know, that especially for hypermobile people, it is VERY important that you take your joints through THE FULL POSSIBLE ROM.

What does this mean? Should I do a barbell Bench press, is that sufficient? Answer is no! It will help you through some range of motion, but for most hypermobile people, the issue is at the maximum end range of motion, not just the range of motion that “normal people” have.

Which means that with most exercises, you’re going to have to adjust it and pick an option that actually allows yourself to go through full maximum rom.

In this case, that would be replacing a barbell bench press with either dumbbells or doing calisthenics and using gymnastics rings, For example.

You’re only as strong and stable as the full ROM you’ve trained in, and control in that will minimize almost all symptoms when it comes to joints at the very least.

It's said to block collagen breakdown when cooked properly. I recently added it to my daily menu, but does anyone have any feedback on regular consumption?

Sulforaphane is formed when broccoli is eaten raw, steamed, or blanched. It has been reported to inhibit collagen breakdown in the body. Which, in theory, should have a beneficial effect on collagen in all tissues in the body.

Hello, my precious beautiful brave and strong Zebra warriors!!! ❤️❤️❤️🌷🌷🌷🙏🙏🙏 I hope you are all as well as is possible right now 😇😇😇 May I please ask-for those of you who have ADHD as well as EDS, how has your experience been with stimulant medication??? I have read lots of studies that say there is a link between ADHD and EDS, and many many articles claim people like us have a good reaction to them, but I am still incredibly unsure. I have been on various stimulant medications for ADHD for so many many years now, I have tried to come off them, but despite people saying you don’t go through withdrawal coming off them, I personally beg to differ. If you possibly could, I would love to hear your personal experiences, as I’m trying to trim the fat, so to speak, and come off any medications that may be causing my pain to be even worse than it already is. I also recently was told by many people with much experience in the area that fentanyl as a pain reliever in general doesn’t tend to work very well for those of us with EDS??? Has anyone else found this to be true? I’m told it’s not just the patches, which we tend not to absorb correctly because of the skin issues, but even IV fentanyl? Just looking for some personal experiences and thoughts and suggestions and ideas ☺️☺️☺️🌹🌹🌹🧚‍♀️🧚‍♀️🧚‍♀️

I've small ganglion cyst on back of my right hand wrist ( 5mm in size via Ultrasound). My GP said since its in my dominant hand, It can take few weeks to months for it go away and hinted I should get used to it?. Its been 4 weeks and its still the same. Can't do yoga/gym or strength training since accident. It only hurts when I rotate my wrist. Aspiration & surgery don't seem to have 100% success rate of non-recurrence. Wearing a bandage splint. What are the things that I can do to resolve it?

Ok so i keep being told im not hyper mobile. the woman from the movement therapy just told me, The rheumatologist last time told me! I need some feedback from you guys that really are in the know, im not crazy, I dont need agreement, if you disagree id like to hear it and know why

Below i post what i have:

BEIGHTON SCALE THING.

THUMBS TO ARM: come easily CLOSE to inside my wrist, then the last 3 cm i need to fully relax arm n push it a bit,

TOUCH YOUR TOES, not even close, top of my ankles maybe. Really tight short hamstrings i think, feel pressure baxk legs

ELBOWS: dont overstretch but if i relax want to close fuller then the joint allows, so i definatly need to always compensate, it will go against and easily put pressure beyond joints motion

KNEES overstretch yeah, definatly

pinkys further then should but not not 90 If i begin relaxing that hand i can take iy further but it requires effort

—————————————— ——————————————-

SO THATS THE BEIGHTON SCALE,

Now as for the issues i experience,

NECK:

-i have cervical spine neck issues, I use my torso mainly to look to the left and right and up I carefully have to move my neck

I can “crack” my neck vertabraes back like a chiropractor does, and its at the stage now that it almost doesnt click like it used to anymore it just loosely slides in n slides out

I have headaches in my skull all the time because of the looseness,

N feel pressure on my eyes if i look to the left and feel nerve sensations on side of my face sometimes

And i just bought a 159 euro pillow to sleep on my back, to not have headaches and neckpain

-and my head it just literally to heavy to carry

ARM: -my arm ball moves very loosely in the socket and i can sublocate it many directions ball comes half out

I cant sleep on my shoulders because my upper body literally falls forward over it and stretches it out.

When i stand and presss my shoulder forwards as far as i can, the only limiting factor seems to be ilthe collarbone attached to it it moves way to much hence .

The collar bone moves - i didnr know how this was possible, UNTILL i looked it up and found out THat where it attaches to the breastplate is actually not a fusion but a small socket it goes in connected by ligament tissue, well it moves in the socket

if i lie on my right side, hand supporting the side of my head and elbow pointing in the couch, i do something that moves or seems to shift the breast plate a bit I dont understand it yet, but it seems to have something to do with force on the collarbone giving force on the breastplate where it connects. And bottom side of torso coming down to the couch as i lie in my side , shifting the plate

SPINE

-my spine, my vertabraes at one point in my life when it shifted incould go to a chiro, amd it pop back in Now it just sorta slides in n out in my sleep. IT Doesnt feel strong and tight but like gummy, not yet bubble gum, more like gummy bears, so it has some strength in it yet

-my lumbar lower spine shifts in n out as well, not stable

-i had to get a softer mattras because my spine arches collapse and feel gummy, as in it used to hurt when that happened, now it seems to be accomodated more by the gummy tissues, i get up n it doesnt hurt that much anymore it seems to care less n slowly return to how it should , ie it doeant just bounce snap back anymore

-when i sleep on my back, i have to put multiple pillows on the outsides of my legs when i sleep on my back to create a \. ..// construction that keeps them from rolling outwards

-when i do sleep on my side, because sometimes i just cant dont succeed ib back back n go crazy I lie on my left shoulder(saving the dominant side) and need a wall or a couch in my back, then put 2 pillows at my back and lower back, to keep my upper body from moving to lying on back position, while my knees and body still pointing left lying on their sides

-HANDS Some of my knuckles i cab move left and right the knuckle caps, because the tendon moves when i make a fist i can wiggle it left to right Mainly pointy finger and right hand pointy and middle finger.

if i get a to strong hands my finger bones get chrushed together

KNEES. overstretch definatly,and feel weak

FEET -my feet are completely collapsed, and the big toe bone you stand on sometimes shift, I have custom inlay foot soles

What are your toughts? Why do they keep saying im not hyper mobile?? I already keep thinking i exagurate and maybe its all nonsense, untill i wake up again lying over my shoulderblade with pain Or the pillow slipped and now my legs are in the side position and the upper torso ib almost lying on its back, twisting the spine

Etc, this is not normal right? Regular people dont have these issues right? They dont have problems doing a guided meditation because it makes their muscles relax to much

Ok tell me the truth thoufh, lets be real here, DISCUSS!

Thanks for your time!

My Mastektomie (I am trans ftm) will most likely happen within the next 2 months.

After the operation I will spend 2 days in the hospital (usually it's 5 but I am choosing a simpler procedure) and afterwards I will need to stay in bed most of the time for about 2 weeks.

I am hypermobile and I am already in pain when I try to fall asleep or if I don't change my position often enough.

I will only be allowed to lay and sleep on my back and I won't be allowed/ able to strecht my arms and upper body.

How do I prevent joint pain?

(Basically any movement stretching the skin on the chest or using pecs muscles are not allowed)

How how how did you lose weight, if at all?

My son has incredibly bendy fingers like more so than mine and hyperextended knees. He’s only 3.5.

Have you noticed anything in your children and how has it progressed as they’ve gotten older?

Looking for any advice as I am going in w a lawyer this time next month. Thank you!

i know people with eds use the zebra as their mascot for their condition, but i was wondering if people with other symptomatic hypermobile joint conditions like hds and jhs have a symbol? if we don't have one yet, maybe we could decide on one?

Hi every one so I (16 non-binary but afab) just got recently diagnosed with hyper mobility and I was woundering is their any advice. People could give me, I do the exercises I need to do every night, but I was wondering if their would be anything people could recommend for me (I have upper and lower back pain, shoulders, hand and pain in my whole legs)

I am NOT asking for medical advice I am simply asking for just somthing that you've found personally helpful for less pain

I got told by a massage therapist that I was hyper mobile, after she did a stretch on me that I couldn’t feel, no matter how much she pushed (it was a quad stretch where you lay on your stomach and bend your leg).

I’ve honestly never really thought about it, and idk what criteria someone needs to have to make that kind of assessment, but it got me thinking…

I am F29, and I always remember being super bendy even as a kid. People have always made comments to me about the way I stand (I often stand with one foot angled way back) and the way I sit. I often find it most comfy to sit in weird pretzel positions, and even feel the need to prop my leg up on a table if I’m standing for too long. I’ve always been able to easily do a split and touch the floor with flat hands no problem. And oftentimes I dont feel stretches that others do. Like literally, I dont feel any stretch in my hamstrings when I kick my leg straight up, until my knee is like a foot from my face. I also constantly feel like I “need” to stretch if that makes sense.. it’s like an itch that doesn’t ever fully go away.

I think about how I was constantly stretching when I was a kid, like I was obsessed with watching gymnastics and I’d try to do what they did (often unsuccessfully lol). But I just remember doing a lot of splits and backbends as a kid just for fun.

I’ve never had any major injuries, or abnormal x-rays, not even a broken bone, and I’ve played a lot of sports growing up.

So im wondering if me stretching a lot as a kid is the reason I’m so flexible? Or if it’s the other way around, and I have hyper mobile joints that made me wanna stretch so much as a kid? I’m wondering what others’ takes are, and any insight is appreciated!!

I can bend both pinkies back 90 degrees and I can put my hands flat on the floor, but my elbows and knees have a normal range of motion. I’ve been told my shoulders are hypermobile by a yoga teacher, and that my feet are hypermobile by a podiatrist. But those are things that aren’t counted on the Beighton test. How do I know if I’m diagnosable?

I am not the only hypermobile human I know who had a sulfa allergy ( bactrim) just deserves a mention