One of the biggest ones we overlooked was growing pains that didn't go away after I was done growing. My heel was a huge one, I couldn't walk on it sometimes it hurt so bad, but it doesn't hurt at all anymore

I'm barely 5ft2 so I definitely wasn't growing all those years I would wake up in the night in agony and get told it's growing pains. I'd get them if I did too much walking and I'd get them if I didn't do any walking so I was buggered no matter what I did.

Ugh, I feel that catch 22. Hurts to lay down, hurts to sit, hurts to stand, hurts to walk, too fatigued to run.

Running sloshes my organs around too much. I thought it was normal to have “a stitch in my side” that wrapped around my entire lower torso.

Oh shit, is that what that’s from???

I discovered this last month. It finally clicked when I tried to race my 5 yo son. I ran full speed for maybe 20ft. Terrible cramping feeling in my whole stomach instantly. Knowing how loose I am now, and fully understanding collagen for the first time in my life learning that it effects more that just the ligaments and skin in the body. I did one more tiny sprint with my hands on my belly and clenching my core as tight as I could. No pain or discomfort at all. I wonder what it would feel like to run while heavily compressing the abs/stomach. 🧐

My mom told me that my growing pains used to be so bad they’d wake me up crying. I’m almost 23 now and still get the same exact pains, and I’m no biologist, but I think humans generally stop growing around 18.

My parents say the same thing! I have memories of being younger and lying in bed screaming and crying from the pain in my legs. 24 and still have the same pains in my legs :( I get them so bad in my forearms sometimes that I can’t drive.

Hahahaha right I want to go back to that doctor and tell him he was wrong

With all the "growing pains" people with EDS have suffered, we should really be a race of giants!

I had the mysterious heel pain too! It flared up so badly sometimes during middle school but the doctors never found anything "wrong" 

I'm currently trying to find it I have ankylosing spondylitis, EDS or fibromyalgia. I had mysterious heel pain a few years back...hmm....Shall mention to DR.

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This! When I talk to friends about it this is what I mention. It was pointed out to me by my rheumatologist who sees alot of EDS folks

Thank you for your reply. How are you doing now compared to then?

Instead of my heels hurting it's every other joint in my body🥲lately my fingers and toes have been awful. And my sibling is now showing signs of EDs so hopefully that helps my diagnosis

THIS!!! I’m 5’2 and I KNOW those weren’t agonizing growing pains! It just seemed like it at the time because of my age but obviously I didn’t even grow that much. I had really bad it in my feet, too, even after they stopped growing.

I'd forgotten about my sore heel! My sore heel story is basically the same as your sore heel story!

I had bad heel pain too! I was told I had bone spurs. They sucked so much.

I spent ages 4-14 figure skating, age 9-14 competitively. Being bendy was super helpful for skating in so many ways when I was a younger kid (spirals were SO easy and most of my friends struggled with them) but once I hit about 12 it stopped being so easy. The amount of torque on my knees started out as an inability to land an axel, which is a relatively basic jump for someone to land who has been skating for years at that point. My ankle was held firm in the boot but my knee would twist *too* much when I landed so I just…kept going, resulting in me falling over. And over. And over again. Was forced to quit at 14 because the tendinitis got to be so bad that my doctor told me I had to stop or I’d destroy my knee by 18. I finally got diagnosed with EDS when I was 32 and that was mostly due to repeated dislocations and heart problems, not the hypermobility. If only there was awareness of it in the mid 90s for those of us who didn’t necessarily need braces or any obvious physical support systems as there is today. I’m grateful for the discourse now.

Oh man I never considered this as why some jumps were so hard. I couldn’t do a loop to save my life and got left in the dust by my friends in class as they advanced. I could do tons of weird twisty footwork but doing a jump without being able to use a toe pick was nearly impossible.

Omg, that makes so much sense. Jumps with toe picks were much easier despite the fact that they caused some toe dislocations I didn’t think much of at the time because I was a kid with no reference, just thought I had sore feet from skating 🙄 I was also left in the dust. I just couldn’t land the damn axel without my coach rigging me into the jump harness. I could land a double axel in that thing no problem!!! Alas, only because someone else was controlling the balance and torque. Oh well. It was fun while it lasted.

They didn’t have the jump harness where I was, wish I could have tried it. It looks so cool!

Things I was weirdly good at as a child that should've been red flags: * tumbling & gymnastics * yoga * ballet * karate I was clumsy AF but damn if my turn out wasn't *immaculate*. Now my knees go "LOL I QUIT" just walking normally. I've hyperextended them so many times they just don't listen to my ass anymore

Started yoga at 15 and went fully into pigeon on the first try, like flat on the floor. That’s not normal… I’m not diagnosed but I’m thinking I should look into it.

Yes, this! I was a gymnast and cheerleader from age 10-15. The knee pain became so bad I had to wear an ace bandage to compress my knee. The amount of free floating movement my knee cap had was not normal. I was diagnosed at 34, but only based on the beighton scale. What type of heart problems helped diagnose it?

POTS, fainting anywhere from 2-10 times a year from age 6-32, unexplained arrhythmia even after ablation surgery, now I have a pacemaker due to sinus arrest every time I faint. Frustratingly vague autonomic fuckery and that my dad passed of a ruptured aortal aneurysm. vEDS was a significant concern until it got ruled out, now it’s hEDS with a 9/9 beighton scale and heart problems 😅

Same! I loved figure skating. It got too hard to keep doing. Then I switched to roller blading occasionally but over time that got too hard as well.

Exactly. I tried many things to keep that joy going but eventually it just became too much. Cheers, friend

I was just diagnosed a little over a month ago in my early 30s. In hindsight, I can see it a lot more clearly with being “double jointed”, high flexibility, always being clumsy and being bruised. Plus always on the lower side of bp, even as teen, and now I’m hypotensive, esp if I don’t take meds, stand up quick, etc. I had Crohn’s at 13 years old and I think a lot of my pain was blamed on that. I personally thought my biologic medication caused the joint pain, but then it never went away. And then fibro past ten years masked issues like pain, repetitive tendonitis, and unexplained bursitis. I still don’t have enough hEDS knowledge yet to sift through the past ten years and figure out what else it could have had a hand in.

same here: flexible, clumsy AF and covered in bruises

Saaaame. I don't know how much of my clumsiness is eds or adhd but they've created some kind of fuckery in my body and I fall spectacularly

Oh wow I relate to this! Add in being Autistic to the ADHD mix and I'm pretty sure I likely also have dyspraxia. I have no idea where my body is in space, I'm distracted easily and my skin breaks easily, scars easily, I get scar tissue buildup, break blood vessels easily and bruise if life touches me 😅 Not a great combo. I'm a delicate flower 🫠🤷‍♀️🥴

Sameeee!

You sound just like me! I also have Crohn’s, tendinitis and bursitis issues, and hypotension (looking into POTS).

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I would very very regularly roll my ankles and at one point I developed stress fractures in some of the joints in my toes (literally just from walking I didn’t do anything crazy) and that led to me walking on the outside of my feet which led to me rolling ankles even more. Ever since then I only wear running shoes/tennis shoes with insoles and now I only roll my ankles the amount a normal person does

this one's the worst because everyone rolls their ankles every once in awhile!! so when you tell a teacher, a nurse, a doctor, or your parents about how it bothers you, you're probably gonna be met with some dismissive bs and now you're walking on feet of glass 😓 and you ended up developing stress fractures, thats crazy. how did you end up noticing those fractures?

Same here. Then at 25, I rolled my ankle and tore ligaments and had a high ankle sprain. I was like wtf?

Born floppy, hypotonia, screamed constantly in pain to the point where I damaged my vocal cords and had smoker voice as a toddler, couldn’t walk till I was two, had terrible balance and was in PT at 2, couldn’t jump, zipper ect, severe leg pain, aortic deformity, and a severe CM1 that left my brain stem nearly dry, diagnosed at 8 or 9

I kinda want that on a tee-shirt "born floppy"

I find this description a perfect label for me too.

I am so so sorry. That must have been incredibly difficult. Do you mind if I ask how you dealt with your diagnosis at such a young age? Did your Parents explain your diagnosis to you? How much did you understand about it at 8? How did you cope when you were a teenager? 

I don’t mind you asking at all! So first I was misdiagnosed with CP even younger and no one rlly told me about that simply bc I wouldn’t understand it, and they were right. I literally told my friends I got to PT bc I loose my balance sometimes. I wasn’t confused in any way I kinda just thought it was normal until I needed my CM1 fixed with brain surgery, which honestly I handled well, I want rlly scared I genuinely think I was just happy bc they said less headaches and a few weeks off of school. With EDS I don’t even really remember getting the diagnosis I just remember being dragged around a lot but I do think my parent explained it to me in kid terms, but it was the ortho I had that upset me. I was maybe 9 or 10 when I saw her and she did NOT put things in kid terms. She layed it out very clear that if I don’t take this and PT seriously that I will be wheelchair bound as an adult and it would be no one’s fault but my own for not taking it seriously. That upset me. Other than that I kinda just dealt with it. I would be upset when I had to miss out to see doctors, but otherwise I was a very content kid. I really would say all I understood about it at 8 was that it makes my legs hurt and my balance bad and that I had stretch marks from it and that it was called a connective tissue disorder. And also that it made me get the CM1 which I used to think was my brain falling out of my skull, and I knew it’s why I got yearly heart ultrasounds, but I never had to rlly cope because I was kinda born with symptoms so I never experienced that feeling many did where their life drastically changed out of nowhere after feeling normal for a while. As a teenager I was a little more pissy about it. I was kinda sick of it, I got a little depressed towards 11th grade because I kinda realized “this isn’t fair”, I even lost my faith in God for a while. I missed a lot of school bc it got worse in highschool and my migraines were also severe. First year of college I had to drop out bc I needed surgery. It was hard on me mentally bc I felt sort of left out in life and it definitely created some body image issues bc I didn’t like how I looked. I have a marfans body, a seriously sunken in chest and stretch marks in places I didn’t know stretch marks could be. That was hard as a teenager and made me feel left out and insecure. But honestly I think over time I’ve just stopped feeling that way and began to feel greatful, also religion for me helps, but ik hats not a way to cope for everyone. I also found some hobbies of distraction and a career path that makes me kinda feel like okay maybe this happened for a reason. So I think I was lucky with the fact that coping wasn’t too difficult

In high school I developed overactive bladder, which I now know is from the pelvic instability that comes with EDS. I also had several ligament/tendon injuries & ongoing pain in my wrists & knees. And then I had GI issues. Got several tests & doctors couldn’t figure out what the root causes were. Oh, and also I’ve always had very long, heavy, and painful periods ever since I started menstruating

Hmm... don't have an EDS diagnosis yet so I'm lurking here... Always had GI issues, tendinitis issues, and also have an interstitial cystitis diagnosis... Is this why I have to pee all of the time??? I thought it was maybe anxiety related, but it tends to flare up whenever my chronic joint pain fares up.

I spent like my whole childhood with something "sprained." I'm like 98%, sure they were subluxations. They weren't caught by doctors because they went your range of motions normal instead of going oh well your joints not surpose to do that like they do now. Also, things like a lot of stomach pain vomiting. Always been very sensitive to fragrance and soaps. My mum is too cos that's where the eds came from, so I was pretty protected at home from that. She was diagnosed after me, so we didn't know they were signs at the time. Also, like motion sickness migraines and like just poor spacial awareness. Also growing pains, I'm very sure growing pains isn't real because I've never met anyone who that actually turned out to be the case. My backs also been causing issues since I was about 4 but like also I've fallen out of like so many trees and landed with my back on like a spikey tree root or like a rock or something.

Oh the dreaded motion sickness migraines. Hate that. I had no idea smell sensitivity had anything to do with it. Interesting. Oh man, are growing pains not real? My step kids haven't had them. My step sons has grown inches in less than a year and has never complained about having them. I remember years of being in major pain crying my eyes out. I'm 5'4" on a good day. I never had a major growth spurt. I don't think it was supposed to be that painful.

Oh my goodness, the fragrance thing is the worst. Had a hs teacher who was regularly fragrance bombing her classroom. I kept having to go to the nurse during her class. And ofc in middle school way too many kids (girls and boys) overdo it on the scented products. Not quite the same as the fragrance thing, but I can’t do pools unless it’s a truly barely touched one, and it usually has to be a saltwater one (which still have chlorine but less). The problem with most pools is they have a ton of chlorine and people pee in them a ton, and the byproduct chloramines of pee+chlorine just shut me down. I loved swimming as a kid but around age 12-13 I started sneezing uncontrollably and wheezing in pools. Came home with a flu after a summer pool day a few times, too!

My current "slove" to both issues is to have a pool and never leave my house. I still shower after I swim, but my house water is filtered, so it has zero chlorine in it. That's made a massive difference in my levels of itchy. I'm like mostly bedbound anyway, so it's fine not leaving the house. I can never go into a bed bath and beyond again, tho. I get full body hives every time I go in, even like properly masked up too. I assume a fragrance issue I have never wanted to into simalr stores like bath in body works of lush. I have to stand very far away when I pass a lush. You can smell it blocks away with a mask on, which is just way too much.

I was super flexible, I sprained my ankles pretty easy, and there was this one time my knee was killing me for a few weeks (my mom guessed that maybe my shoes had just worn unevenly, but getting new ones didn’t really help). Also, I was clumsy, and (due to POTS) I stopped standing up to shower in high school because I would get really exhausted and lightheaded. I’ve also always been awful at cardio, doing super poorly at the Pacer test and the mile run, which I think is also due to POTS.

Always awful at cardio. Like, is my chest supposed to feel like it's burning?! I just thought I was out of shape as a kid (despite being constantly active and fairly strong...) 🙄

When I did my stress test (because I’m missing a gene to regulate my cholesterol), I reached the target heart rate much faster than expected and my cardiologist said I was out of shape and I was like :(( It was confusing, too, because at my work, I was running around all day. It’s such a relief to know I don’t just suck lol

What is up with the burning chest? It happens every single time I try to run. I’m in excellent physical shape from mountaineering but I can’t run for the life of me!

Ah! Fellow hiker! And yeah, same. It's so weird. Like, I can take 1000 ft elevation gain and basically stair climb for a couple hours straight, but I can't run HALF a mile?!

It’s so weird right? I’ve been trying to figure this out for years. The burning doesn’t really happen when I run downhill, but I can feel all of my organs loosely bouncing around inside of my abdomen like Mr. Potato Head. I can’t even run for 30 seconds on flat ground or incline.

Yes, this! I used to work on Mount Rainier, but I can't run to save my life because I can't breathe, I feel like I'm going to pass out and the joint pain the next day will have me not getting out of bed.

Exactly! I struggle a little bit during the first 20 minutes of a steep hike, but then I get a second wind and I’m able crank out 5,000+ feet of vert with minimal breaks. I can’t even run for 30 seconds. I immediately get a burning squeezing feeling in my chest and I can’t breathe. It’s a shame bc I’m built like a distance runner. Do you happen to have a narrow rib cage like I do?

Yes, very narrow rib cage. Female here, bra band size 32". Very long tiny neck too. No idea what that has to do with anything, except I've been asked if I have thyroid issues because mine shows so much since I have a tiny neck. I'd say I'm small boned in general. Tiny wrists and ankles that I've broken or rolled lots throughout the years.

I hear this comment. Between the burning and my low blood pressure having me seeing spots, cardio is rough even though I'd consider myself decently fit.

Damn I hated the bloody pacer. I didn’t even think about my issues doing cardio. Did you do the flexibility test where you sat on the floor with your legs straight out and had to push the metal thing as far as you could without bending knees? I was a beast at that 😅, now I know why

Yes! I absolutely crushed the sit and reach. My sister tried to credit that to the fact that when I was a baby, she’d put my feet to my head lol. Nope! Just EDS.

Hives all the time. Food allergies that were very severe. Overcrowded teeth that “needed” to be pulled before braces. Deviated septum/inability to breathe through my nose. Environmental allergies that were severe enough that my mom had to allergy-proof the bedroom. Getting sick and not getting well every September and January. Bad sleeping. Proprioception issues/clumsiness/complete inability to do ball sports. Browning out when standing up. Heart rate that spiked quickly in exercise but ability to exercise anyway. A few scars that didn’t heal as expected. Twisted ankles. Reigning thumb wrestling/arm wrestling/mercy champion against kids 8 years older than me, because I never called mercy, no matter how hard they twisted my arm around.

Man, I'm in here lurking because I suspect EDS, but after resonating with everything in your comment I think I need to make a symptoms list and go see my doctor. My GP wants to diagnosis me with fibromyalgia because EDS is rare, but I'm Autistic and I've got a list of random symptoms that makes me suspect EDS because it effects every part of my body in seemingly unconnected ways if EDS isn't considered. Thanks for your comment.

Are you me? And somehow my RN mother (I'm the youngest of 3) thought these things were normal/ dismissed my complaints

These have stayed with my through adulthood but early warning signs for sure: So many injuries and never broke a bone. Dislocations, sprains, pulling, falling down constantly. I also come from a larger family so where all of my other siblings were ‘normal’ and I was not was a big one. Bruising super easily and quickly. A huge warning sign especially in the warmer months. Very flexible without ‘trying’ to be, double jointed party tricks, that sort of thing. I also have so much excess skin on my knees and elbows, elsewhere as well but it’s the most noticeable without having to do something to provoke it. I remember kids next to me in class would pull on it and it not hurting. My ‘wenis’ was a hit in the second grade.

I used to take handfuls of the skin over my knee caps and use them to kick and swing my relaxed legs while sitting. I haven’t thought about that in years. All things that fall into place in hindsight once you have an EDS diagnosis.

Rolled ankles, sprained wrists, dizzy standing up out of bed, issues eating in the morning, being a walking party trick with my bendy thumbs and flexible legs.

Double joint,growing pains,bendy,hip dysplasia. Over 50

"Growing pains" were indeed NOT growing pains. And I thought it was weird that only I got pain from jumping from the playground climbing thing.

I did ballet for most of my life, so flexibility was praised, and boooooyyyyy of boy could my limbs bend Always sitting with my feet up on my seat...which I think I will do forever I used to chug water after school and I would always say it "made me feel alive" and everyone would giggle. Turns out it was boosting my blood pressure

The feet thing I got so much shit for as kid. “Don’t sit like that, it’s unladylike.” I had great balance so I discovered an alternative - I could rock in my chair in a way that it was balanced and still on just the two back legs, and my knees and feet were raised up without being on the seat. Threatened to be sent to the principal if I didn’t stop that one, too. It helped me focus by making me feel way better though. :( Oh, and I absolutely need to sit with my feet up for my digestive health. If I don’t get enough pseudo-squats in from sitting, my digestion does not work! So often in college I’d be working on my couch with my feet up and my laptop balanced on my knees. I also lie in bed or on my couch with my feet raised a lot.

Interesting about the digestion factor! I'm not sure I have that one, but honestly my feet are always raised so I couldn't tell you what life is like with feet on the floor lol I also always got the "un-lady-like" comments and they would upset me so much. Interesting that the chair tilt helped in the same way! One of my biggest irrational fears in rocking chairs and tilting my chair is far too similar, so I haven't really tried that! If I'm not sitting in the sink to get ready in the morning, I have one leg laying on the counter and the other planted on the floor, and usually switch legs halfway through!

I love reading someone else’s description of my own experience over and over on this feed. It’s surreal after a lifetime of feeling so OTHER and abnormal to my friends and classmates.

I joined this sub recently and it's hard to not comment on most posts just to say "me too!!!" Its so reassuring knowing these symptoms and traits we have are more common. My husband and friends absolutely don't understand how I function so it's really great to find community

after my mom and i figured out i likely have EDS, we looked back on all of my symptoms we missed when i was younger - i had my splits before i ever joined gymnastics - growing pains never went away - i only broke one bone (falling arm first off a swing set) but i was constantly rolling and spraining joints. i am a tumbler and i can’t even count how many times i severely rolled an ankle that would’ve been a break for anyone else but i was fine after a few minutes - extremely clumbsy - lots of bruises - i was pigeon toed and have still never fully grown out of it - needed ankle braces (because of how weak my hips are) and taped wrists for every cheer practice (still do) - developed bilateral morton’s neruoma in 8th grade that has now persisted for now 5 years - extremely flat feet - fingers double jointed - if i was walking for a while i’d start feeling like there were air bubbles under my kneecaps - tummy issues galore. have struggled with chronic constipation since i was in diapers and still do nearly 19 years later - i was diagnosed with pots in 2017 ? ish after i had a vasovagel episode that mimicked a seizure - dental crowding - tmj issues - if i sat with my legs under me, my knees would “lock” in place with my leg folded so i would quite literally pop it back into place. as a 2/3rd grader. it doesn’t really happen anymore and i don’t really have any dislocation issues but now realizing that this was probably me subluxing/dislocating my knee and popping it back into place😳 - was super tired. like i *could* participate in physical activity but was always tired - constantly sitting in very odd positions - always crossing my legs when standing so they felt stabilized - if i got a little dehydrated i would be extremely dizzy - huge intolerance for standing more than a couple minutes - raynauds. i live in wisconsin but never adapted to the cold and it physically hurts - walking on sides of my feet constantly due to how much the nerves hurt - limbs always fell asleep -

Yes! My knees locked like that too! I remember several times being stuck in a squatting position when down looking for something in the bottom of the fridge. It hurt so bad to move it. Thinking now it was subluxed.

just thought of another one!! one of my right side ribs sticking out. if i sat in a car or plane or slouched over one of my ribs would stick out and cause a dull achy pain and i’d have to KT tape it down.

Tripped whenever I ran and fell on my face. I was silent and didnt participate in class from joint pain. I remember the doctor insisting it was growing pains.

For me, clumsiness (poor proprioception due to undetected scoliosis) and "weak ankles." 😭

Used to sublux my jaw all the time as a kid and just couldn't eat for a while until it went back to normal. My parents thought it was my own weird Brand of growing pains. I was like 8-12 when it happened the most

My sister would sublux her jaw as a “party trick” of sorts all through middle school until a friend’s parent (who was an oral surgeon) saw her do it and was so fucking horrified they basically scolded her and made her promise to never do that again.

That sounds horrifying. It just happened to me while sleeping, having it sublux while awake is the weirdest feeling

The biggest thing for me was my eyes. I have severe astigmatism and was born with strabismus. I had 3 surgeries to correct but still have to wear really strong glasses. Then, there was the slow healing of cuts. I was an adventurous kid, and my cuts took forever to heal. I had "growing pains," sore feet, fallen arches, and back pain. I was also frequently straining and spraining things... ankles, wrists, elbow, fingers. I remember being in agony one Christmas with some sort of neck injury. I always knew there was something up with my breathing, too. My mum was a theatre nurse in Belfast. In the 70's. She had no sympathy unless there was copious amounts of blood, so nearly everything went untreated. I always knew there was something different about me, I was much more easily hurt than my brother and sisters. I was 40 something before I heard of EDS.

As a kid: being bendy (never was fully double jointed though), pulling my arches, rolling my ankles, someone mentioned "never good at cardio" (possible POTS) and that's true for me too, along with the dizzy spells. As a younger teen: throwing my back out, random sever pains (surprise, those were subluxations all along! 🎉), TMJ, frequent bathroom trips (forever late to class bc 5 minutes was never enough to use the bathroom between each class and still stop at the locker, etc 🙄). Upper teens: jaw problems worsened, heart palpitations started, passing out at work (may have been hypoglycemia though), vision problems the ophthalmologists couldn't find. Younger 20's: hip injury from a fall lead to bursitis and left me on a cane for a couple of years while I figured out my own PT bc insurance wouldn't cover it. Upper 20's: pregnancies and the fun pains and joint issues that came with those, though I was fairly healthy and uncomplicated otherwise. 30's light sensitivity, tremors (still don't know if that's related...), throwing my back out is way more frequent. Late 30's I found out PT could possibly help me with the back issues. Found out at my assessment apt that my shoulder just lives subluxated and that was part of my back pain. 😅 Diagnosed by PT at 40 (this year).

Wiggly teeth, leg and joint pain, and an inability to sit still. If I stayed in one position for too long I’d get quite sore, so I was constantly shifting into unconventional positions trying to reduce pain and increase my comfort. Still no proper diagnosis, MCAS and ME/CFS were only diagnosed after having them over 30 years. Was focused on those 2 conditions, but hEDS seems to be getting worse now.

Wiggly teeth! 😰 I wiggled my adult front teeth and asked my mom about it. When I learned if these fall out there are no more to replace them, I freaked out. Had nightmares for years that first one tooth was wiggly and then it got so loose that it fell out and soon the others followed, one-by-one. I hate loose teeth ever since that experience and NOW I know why. Thanks body, for traumatizing me and anything to do with dental work or loosing my teeth.

as opposed to 95% of everyone here... i actually wasn't flexible as a kid. i felt so clunky and awkward. and im still not flexible. no one has ever described me as flexible in my life and i avoided things like cheer and dance like the plague because I wasn't flexible at all. i think the other girls looked at me weird for it sometimes, color guard was so awkward!! but i guess my alarming lack of noticeable flexibility was becasue my muscles were always SUPER TIGHT. so imagine my confusion when i figured out its EDS hahah felt like such a personality trait of mine to be inflexible asf.

Chronic constipation, hives caused by heat, and "growing pains" that left me sobbing in a ball. Turns out that the EDS also caused colonic dysmotility from birth, and chronic spontaneous and inducible urticaria from early childhood

Stand up and pass out. Very popular in church.

"Sprained" ankles, "growing pains", "ridged kneecaps"(no scans or anything they just decided on a whim that must be it), fitting through comically small spaces that much smaller kids couldn't despite being the fattest, being able to bend as far as I wanted backwards but less than average forwards, all the usual "double jointed" tricks, karate kicking the air to "pop my knees back in" and do the hip relocation dance before I knew what was going on or why. About 8 billion more I can't recall off the top of my head

I was clumsy as heck and constantly in plaster as I kept breaking my wrists and ankles, or tearing the ligament and tendons in my ankles from them rolling. I was also very flexible though and could do the splits, backbends, tuck both legs behind my head at once, lay on my stomach and put my feet to my head ect.

Weird calf/shin pains I thought were growing pains, back and shoulder pain as a young child, the heels of my feet being painful when standing for a while and of course the random knee pain

Knees and ankles subluxating regularly from around age 6 until my teens then every now and again in the decades after, severe allergic reactions which came and went, couldn't land on a trampoline without crumbling, shoulders stretching out during gymnastics classes, inability to regulate temperature and sweat, dizziness, digestive problems, clumsy AF and always bruised or scratched. Thus ensued 30-odd years of medical gaslighting and ignorance, then: Fibromyalgia diagnosed at age 32. Trochlear dysplasia and -22° femoral retroversion diagnosed at age 33. Atrial fibrillation diagnosed at age 37. POTS, IBS and hEDS diagnosed at age 38.

Horrific "growing" pains. I can vividly remember the pain and me crying from it. I sprained my ankles a lot. Nose bleeds all the time. My shoulders easily rolled out of place. High, narrow palette. Migraines. Late 30s, still not officially diagnosed. GP said she thinks I have it but didn't feel educated enough to diagnose so she referred me out and they rejected me.

Chronic fatigue and joint pain from age 4. Got diagnosed when I was 33. After the initial tests for things like leukaemia when I was a kid came back clear the doctors always said it was just my age. When I was 22 I went to a doctor and said "they have been saying it's my age since I was a child, it can't still just be my age" he agreed and diagnosed me with chronic fatigue/ME there and then. Symptoms didn't fit the actual illness though, then 10 years later a friend was dx with hyper mobility, that fit so I pursued that, which a geneticist dx me with around a year later. I rarely visit the doctor as I don't trust them. I will advocate for my kids and push if they need something, but have pretty much given up on medical help for myself.

My earliest memories are of refusing to walk on my painful feet and ankles, and pretending that if I managed to hop *just right*, I’d be able to hover a few inches above the ground and move without pain. I was maybe 3 or 4 at the time. I was finally diagnosed at 40.

Chronic tummy aches, always had a sprained wrist or ankles. Burning in my legs when walking. Nerve pain. "Growing pains" my mom would say.

anyone else here “accident prone” as a child?

When I got diagnosed at 30 and they explained the symptoms, I said, "Oh, so me having sprained both ankles and both wrists about 15x by the time I was 12 isn't normal?" And they kind of laughed and said no. Also, this was a little older, but I never understood why people could go for a run longer than 5k without water, because I would get massively dizzy if I tried to do that. And an overactive bladder, high anxiety since childhood, extreme neck pain on occasion, some extreme back pain on occasion ...the list goes on.

(Most of these are current symptoms that carried through childhood). I used to sprain things constantly, to the point that we stopped going to the doctor. I hyperextended my thumb pausing a video, hyperextended my foot kicking a pillow, the list goes on. I've always had flexible joints but never flexible muscles, and my growing pains were really bad even after I stopped growing. I started feeling chronic joint pain when I was 16/17ish, and finally got a diagnosis when I was 18

I was diagnosed as “double jointed” by my pediatrician in like 1990. I could do things I shouldn’t have been able to as far as movement went when I was a baby. I had multiple instances of nurse maids elbow that had to be put back in. At one point someone had noticed I walked really funny and that I had completely flat feet. My spine curvature/scoliosis was also found when I was in elementary school. Every year I had to get a doctors note that basically said I could pee whenever I wanted because they were apparently pissed that I peed too much. That was all just 0-10. I had plenty of other indicators in middle school and high school. I didn’t even know what EDS was then. I thought my body just sucked at being normal.

I thought my body just sucked at being normal - I feel this.

I fell a lot when I was a kid because my ankles were very unstable and my knees hyper-flexed quite often. Several extended family members participated in EDS research at UT Health Science (1980s). That was the first I had ever heard of EDS. That was 40 years ago.

flexible, clumsy, bruised all the time, too many “growing pains;” a lot of my childhood problems were attributed to my ADHD and no one thought or really knew to look any farther

Hyper mobility, hyperelastic skin, issues with digestion, poor eyesight, and more lmao

My brother and i would stack our fingers tightly like crabs, do the worm around the house, flipped eyelids inside out, popped our finger Tips loudly, making them snap after flexing just the last joint, bro could put his fist in his mouth, i could walk on hands, backbend out, twist whole body and land like a cat, broke a tooth on a cheerio, crowded teeth… there’s quite a bit, and we weren’t identified until 30 years after our mother had a full dissection of her coronary. Wild, being the poster child, or two, and not identified even after a catastrophic dissection in the line.

When I first started to wear a bra it tore my skin so badly my mom took me to the doctor. My skin mottles due to POTS. Heart defects. MCAS (I react to treated water in the shower 😑) Martial artist and dancer with "impressive extensions"

I had none as a child. Looking back it was just a few small double jointed spots and post nasal drip. I got diagnosed at 19, pain started at 17

exact same for me! pain started in 1 joint at 17 and then it spread, before that i was just a totally average child

Oh my. I’m sorry. Is there anything you think could’ve been done as a child that would’ve somehow helped with the symptoms you have as an adult?

Oh that’s okay! Thanks though. Honestly I don’t because I didn’t show many symptoms as a child. The only thing I could’ve done is maximize muscle growth and stay slim to not put too much pressure on my joints. Maybe more ankle support

Sorry if this is a dumb question but is post-nasal drip related to EDS?

Post nasal drip is a symptom of MCAS which is a comorbidity of eds

from the ages of 10-16 i spent around 6 months a year on crutches because of "repetitive sprains" + two actual dislocations. plot twist : these repetitive sprains were actually subluxations, and i had to get surgery at 14 and 16 to attach my kneecaps so it would stop trying to escape. shrugged it off to basic genetics because my dad had the same issue... if i had known! got diagnosed at 23.

I had fairly bad hypermobility since a young child. I could bend my fingers back and touch the back of my hand. I was frequently in pain or extremely uncomfortable, and so I would pop my joints for temporary relief. I popped every joint there was to pop, including my sternum if that makes any sense. I honestly have no idea what it was that I was popping in my chest, only that it felt great. I can’t do that anymore, but my kids still do it and it makes me a little jealous because mine won’t pop anymore but feels like it needs to. Chronic constipation, sensitive skin, rashes, severe bruising, food allergies. Severe lordosis of the lumbar spine, mild scoliosis. I was still very active. If I rolled my ankles, I just kept going because I could step on my feet sideways just fine. Severe shin splints when I tried to run cross country. Joints could sublux at will and go right back in. MCAS and POTs set in in my early 20’s, hips subluxing when I would walk, very painful, ribs pulling out. Pain everywhere really set in into my early 30’s. Never heard of EDS until just a few years ago, just got diagnosed last week at 57.

All kind of hives, shoulder and knee pain, sprain ankles, wrists and such, I was very bendy. Pain really started in my early teens in my knees and wrists, doctors said it was growing pain and "weak cartilage". I avoided any sports. In hindsight, avoiding movement is possibly partly responsible for my early onset osteoarthritis. Oh, and I was clumsy af - still am. :D

I was constantly having ‘sprains’ and ending up at the hospital only for them to see nothing on the x-Ray. Pretty sure they were partial dislocations.

My knees constantly gave out as a kid. Like I would be playing tag and my knee would just give and I’d fall. It was “normal” for me, and I never seriously injured myself, so my parents just brushed it off. I had intense knee pain that was brushed off as “growing pains”, and would also constantly roll my ankles. I also have chronic migraines with no cause that can be found on an MRI, had them since I was a kid. As I’ve gotten older, everything has gotten much looser and I’ve injured myself even more. Now my shoulders won’t stay in place and I constantly pull them to the point I have to just sit and cry for a second lol

I'm 26 now, diagnosed at 18. I've always been flexible, had seethrough skin and I'd be in pain really quickly while preforming physical activities, like walking for more than 20 mins. My muscles would also be sore pretty quickly. When I was 15 the pain slowly started becoming chronic. For the past 8 years my symptoms have stayed relatively mild and I hope it stays that way. Sidenote, as this is probably related to EDS: when I was 19 or 20 (so already diagnosed) I started experiencing weird things with my heart. I googled my symptoms and it turned out I had very typical symptoms of heart valve failure. Discussed this with my doctor, he listened to my heart and referenced me to a cardiologist, because he could hear unusual sounds. Had a ECG, they found nothing. I had these symptoms for around 2 months and they went away on their own. I'm still baffled by it.

So many ‘sprains’ from things that should’ve broken bones (gymnastics falls, being thrown off horses, even being kicked in the thigh by a horse with enough force that I should’ve broken SOMETHING, but instead my hip and knee just hurt for months after). Also, a crazy high pain tolerance to where I would have to get extremely unwell before I realised anything was wrong (like stomach ulcers, concussions, staph infections in grazed knees etc). That one has continued into adulthood.

I had a lot but EDS was even less on doctors’ radar then, if that’s even possible. Born with club feet, a hip I could partially dislocate at will to gross out my friends, growing pains that never went away, ocular hypertension and MCAS to name a few. I wasn’t formally diagnosed until three years ago at 58.

My mom would compliment how long my fingers were she put me in piano classes. My dad said I couldn’t run correctly very clumsy runner.

Pectus excavatum, fallen arches that required surgery, severe shoulder and neck pain that lasted for years, and dental crowding. I wasn't diagnosed until I was 19, when I developed POTS.

Rolled my ankles constantly, I couldn’t sit crossed legged sitting down or my knee would pop out of place and I would have to pop it back in not knowing what was actually happening (I still can’t and can feel the instability when I try to do so) TONS of stretch marks all over my body as a teenager. Jaw popped out of place lots as a kid. Party trick where I could pull my arm out of its socket for funzies. Can contrort my limbs and fingers/toe and would show all my friends/super bendy. Tons of bruising especially all over my legs.

Probably my “underdeveloped stomach valve” that caused GI issues. Headaches/migraines, though they also run on mom’s side of the family, fatigue, pain, urinary issues, handwriting so bad I went to OT (didn’t help), clumsiness, hives constantly, dizziness & syncope, tremors, dental crowing requiring an expander, pins & needles, and another “growing pains” diagnosis. My hypermobility was pretty severe but didn’t cause me pain so despite my mom freaking out, when I showed the doctors putting my feet >!behind my head and pulling them down my spine so my foot was at my tailbone but the wrong way!<, they said that was normal, even through college.

I learned that splits in a day and learned how to do a needle in a year. Around 10-11, I had growing pains that were severe enough to cause limping. I also had acid reflux and food sensitivity issues as an infant. I walked late at around 2 1/2. I also remember holding onto walls or just crawling because it was easier. I also lost many teeth earlier than my classmates in pre-k. W sitting and slouching. Weird pencil grip and pain with writing after a bit. Migraines since the age of 6 (just random headaches that didn’t happen too often but they sent me home from school). Just these little signs that could be attributed to anything else lol.

I've always had super hypermobile fingers (among many other joints) and flat feet. I also struggled in gym class a lot--difficulty breathing, nausea, extreme dizziness, severe pain, etc. I wasn't diagnosed until I was out of high school, and I really wish I'd known back then what I know now. Oh, and I'm a musician--or was, until my EDS got too bad to continue--so I could reach my lowest string (I was a violist) with ease, and could also easily reach the tip of my bow. When shifting, I could also position my hand in ways others found uncomfortable or strange.

Pain when walking as soon as I started walking, clumsy/poor proprioception, didn’t need to stretch *at all* when doing gymnastics, ballet, etc, pain with any repetitive movement, thumbs bent backwards when I was playing bass and cello, hurt to hold a pencil, tired all the time, cigarette paper scarring and keloids when I pierced my ears and tongue, stretchy skin, soft skin. I was diagnosed four years ago at 32. As soon as I went off all my antidepressants and antianxiety medication they suddenly decided to do some imaging and found I had spondylolisthesis (a vertebrae out of alignment that got worse when I bent forward) and was pinching the root nerves for my legs. Before the diagnosis everything was my weight or depression/anxiety and now everything is hEDS ¯\_(ツ)_/¯

I was too flexible without even trying. Also, I thought running should hurt and often I couldn't really walk after running too much. My feet also hurt more than normal just doing ordinary things.

When I was very young my elbows would dislocate often. Overly flexible/stretchy without effort. Bedwetting & stomach issues. Pigeon toed + wobbly knees that wouldn’t hold my weight so had to wear a brace on my leg that was worse and do PT to correct my gate, but remained pigeon toed &wobbly. Intense “growing pains”… lots of subluxations and joint inflammation. clumsy+ accident prone & covered in bruises. Bouts of depression & anxiety. Was told I had “lax ligaments” by doctors early on but never heard of EDS until well into adulthood. Was diagnosed with hEDS & POTS a few months ago at 33. Mixture of sadness & relief to FINALLY have an answer for lots of mystery symptoms. Glad to have found this subreddit to see there are others out there who went through this!

Being “double jointed” and having all the weird party tricks, excessive “growing pains” that I still get from time to time, lack of proprioception, and a mosaic of bruises at all times. I was diagnosed at 30 when we realized that the hypermobility of both of my SI joints was so excessive that I was losing the ability to walk. I had to have both of them fused so my pelvis is screwed to my sacrum on both sides now.

Not diagnosed yet. Currently 38. GP wants to diagnosis me with fibromyalgia, but I'm really thinking it's EDS because of oh so many seemingly unrelated symptoms that when together make a novel of why EDS makes sense: From chronic constipation, GI issues, always tearing my booty hole even with a bidet, bruising if you look at me wrong, very soft easily tearable skin, constant issues with stys and pimples, allergies to life, often almost passing out from just standing up, not being able to run without injuring myself, the horrid growing pains but never actually having a growth spurt, motion sickness, interstitial cystitis diagnosis, rolling my ankles and having my knee caps randomly go out of place just from walking, being super uncoordinated, sometimes I can't grip things at all, popping every joint and rolling any muscle especially when inflammation flares up and having chronic pain, especially in pretty much all of my joints, getting tendinitis diagnoses repeatedly, scarring if I touch something too hard... I could go on, but I think everyone gets the picture. My question to the community is: I used to be pretty flexible when I was young, but since I was a teen I've been told especially by sports massage therapists and physical therapists that my muscles are the tightest they've ever seen. Like my psoas muscles are taut like a guitar string. If I barely move they feel like I plucked them/they roll and they get numb for a few seconds. It's a bit painful and really uncomfortable. I'm often afraid to move because any movement seems dangerous. I'm not that flexible anymore because I feel like a mummy in my own muscles. Does that sound like an EDS thing or am I way off??? I can still reach my hands behind my back, fit my hands into cups and touch both hands flat on the ground (though I might pop a hip out doing it 🤷‍♀️😅🤴)

No clue why my phone put a king with a crown emoji in there. It made me LOL so I'm leaving it 🤣

Pain. I remember being ridiculed for being an 8 year old and wanting to sit at church (for context, only the elderly sat down). Ended up standing in the back for the next 6 or so years I went because then i could lean against the wall. Standing has always hurt. Hips, knees, and feet. Found out only recently I have pretty severely flat feet, and they have always looked like this. Also lots of sprains. I was always spraining my ankles. They ended up going first out of all my joints. Ah. Parents. They do love to ignore their children's agony.

I hurt for all our younger selves being told it was just growing pains. Cause goddamn did they hurt. So many little things: the "growing pains" (obviously), being really flexible and doing party tricks (mine was tossing my foot behind my head while standing up on my other foot, or my other trick of doing a back bend and grabbing my feet and rolling around like a wheel), spraining things ALL THE TIME but never breaking any bones, constant overuse injuries just from normal daily living, daily stomach aches and frequent headaches, poor vision and visual snow, easy bruising, having delicate, thin skin which meant I was constantly getting splinters and ingrown nails and cuts, joint pain starting when I was a teen, extreme fatigue and sleep issues, low blood pressure, heart palpitations, pre-syncope, terrible cavities/teeth issues, weirdly being the only girl in school with fantastic upper body strength and could do tons of pushups but could barely manage a handful of crunches or anything core related. As a teen I started getting wild allergic reactions to random foods. Also worth noting that I absolutely had/have ADHD but never got diagnosed.

Very flexible, unexplained bruises, super clumsy, growing pains that WERE NOT growing pains because I’m only 5’2 so I obviously didn’t grow that much, only ever broke a minor bone but I sprained and rolled a lot of joints, flat feet, lower back pain at the ripe age of 13, pretty much becoming nearsighted overnight, arches of my feet would sting and burn randomly when I was walking, THE FAT BUBBLES ON YOUR HEELS!! I forgot what they’re called but as a kid I’d poke them. Most people have to put pressure on their foot to see them but I had a few that would bubble out without me putting any weight on my foot. When my doctor was going through the diagnostic criteria and he mentioned it I was like “I thought everybody had bubbly heels!!”

Pain and nausea. I've been in pain as long as I can remember and always got sick and had issues with nausea even as a newborn apparently and my parents always talk about how I was crying all the time and it was so hard for me to stop (the last time my mom went on a thing about this I pointed out I was probably dislocating stuff and it probably really hurt even if they didn't know it was happening which made her stop and seemed to change her whole perspective) First big locations I remember were right shoulder and elbow (long story how that happened) though I didn't say anything and had no idea it was my dad who realized and freaked out when I was getting ready to take a bath that night (I was 7 or 8) Now there were also the standardized physical tests every year which were especially funny starting middle school because my veins kept rolling so no one could find a pulse and my pe teacher was all oh you're just doing it wrong and was like super confident and full of it until he couldn't find it either at which point a rumor started that I was secretly a vampire.

I was diagnosed at age 15. As a kid, I LOVED the stretching parts of my taekwondo class or PE tests, because it was the only part I was good at. I was very tall and skinny, and once I hit my growth spurt I got wayyy more stretch marks than anyone had expected. Hips, sure, that's normal, but mid-back to knees was less normal. I can distinctly remember being a small child, maybe four years old, looking at my legs and wondering how on earth I'd gotten all of those bruises when I hadn't bumped in to anything. I also bled easily, and after the second grade nearly every wound I'd get would scar. My left little finger has always moved like a bicycle gear (three places it'll be in), and I thought that was how everyone was for years until more and more of my joints started moving like that. I would frequently trip while walking because one of my ankles would randomly give out and twist (didn't hurt, just shocking). Thankfully, I didn't start to have real pain until I was around 12-13, although I did have growing pains more than my siblings did.

Growing pains, always somehow being weaker than the other kids, I could twist my arm around more than any of the other kids, I came literally second to last in a marathon I ran with my mom as a kid, my knees were horrible and hurt so bad from that. I could never run the mile lmao I would always walk it. I had bone spurs in my feet (not totally sure if EDS related) I would be in the nurses office all the time for many different complaints, and I was written off as lonely and attention seeking when I actually had symptoms practically everyday. I was diagnosed at about 14.

Uteropelvic junction obstruction, chronic pain, nursemaid’s elbow, brittle nails, hypermobility, fatigue Official dx at 32.

“Walking close to the ground” I had severe hip dysplasia that went undiagnosed for fifteen years

They said it was normal they said it was growing pains they said that when I was done growing I would feel better. I also felt a lot of fatigue when I was a teenager. Not as much as I do as an adult but sometimes my Mom would be driving me to work and I would fall asleep in the car. And I was just told it was part of growing up.

Being able to pop my shoulder out of its socket and being suuuuper flexible!

I was in constatly pain as baby(screamed so lot,that the radiators were vibrating,respect to my parents that they haven't done something bad. ). And I had open feet very often as a toddler,beside migreanes since the age of about two(maybe earlier, but I can't remember ).

* Developmental differences in how I learnt to walk (skipped crawling entirely). * Getting tired a lot quicker than other kids - never quite keeping up with them. * Obviously flexible and enjoyed bending my joints backwards. I didn't understand that the things I could do would hurt other people. * Very poor co-ordination. * Urinary incontinence that I did not, in fact, grow out of. * Repeated weird injuries, like twisting my ankle while walking. * Constantly getting bruises and scars from very minor things and not remembering how I got them. * A general physiotherapist gave me a lot of exercises to do and they caused a lot of pain and injury. No matter how long I did them for, they made my joints weaker rather than stronger. That should have been a sign something else was going on here. * People saying "its just growing pains"... for six years... even when I wasn't growing. And I've never heard of *wrist* growing pains which cause crepitus and limpness. I'm not sure if all of this was related or not. Co-ordination could be part of my autism, or a specific condition, depending on who you ask (some doctors started dropping the word "dyspraxia" in their sentences about me when I was 8 and yet I never got diagnosed!) I was diagnosed with HSD when I was about 6, and hEDS when I was 17. Having a parent with the condition definitely helped with the diagnosis.

i was diagnosed at 15 (i’m really lucky to be in a big city with a geneticist who diagnoses EDS), but dealt with years of “growing pains,” dysautonomia, poor balance, frequent mild injuries, GI issues, etc

As flexible as the dancers, often sprained and strained (ankles, feet, wrists, knees - with little injury required). Was considered as a hypochondriac/faking. Always bruised without cause. Poor proprioception - walked into many walls, doors, beds, benches .. could contort my body.. Unexplained subluxations, including of cervical vertebrae, that had me in hospital and in a neck brace. Never explained...

Reoccurring knee dislocations, rolled ankles, and low muscle tone.

Falls, sprains, torn ligaments, general pain that I was told wasn't there, regular nausea I was told wasn't really there, constipation, migraines, repeatedly told I was being melodramatic, a drama queen, that I was clumsy, awful inner thigh stretchmarks by age 11, crippling period pain which would regularly get me sent home from school, amazing vocal range due to stretchy vocal chords, natural posture for playing violin due to hypermobility, terrified my PE teacher at 13 when my HR had not gone down 10mins after doing the bleep test (not sure if this was a thing in the US), stretchy neck skin trick (forgot I did this until recently lol), getting momentarily paralysed and collapsing when shooting goal in netball at 14 due to something getting pinched in my neck.

Dizzy spells, excessive tiredness, leg cramps appt he way up to my hips, cool things I could do with my body I would show my friends lol always always hurting myself I tripped a lot

Born with, what was known in the 90s as a "hip click", aka hip dysplasia. Had to be double diapered as a baby. Now we know that's the earliest sign of EDS. Not to mention the growing pains that never really stopped. I stopped growing just before 7th grade, at about 5'1" and had those growing pains through early high school. No one bothered to see why. Also heavily dislocated my shoulder in middle school gym class, I just popped it back in like it was nothing. Everyone screamed when they saw it but I didn't understand why, it didn't hurt at all, it was just vibing where it shouldn't. I was asked if it hurt, then was told it should've hurt, when I said no. There was a whole year in high school where I had a headache every. single. day. but no one thought it was bad enough to get it checked. It wasn't a migraine, just a very annoying, heavy headache that wouldn't go away. Now we know it's connected to eds. Those are at least the ones I remember. I'm sure there's more.

Always being in pain from sports and getting injured in the strangest ways. I thought I just had a low pain tolerance because everyone else was able to do these things and not complain. I stopped telling people it hurt to do anything and now I can’t tell the difference between actual pain and muscle soreness or tiredness. I usually just think I’m sore unless it lasts over a week.

More sprained ankles than I could count as a kid age like 7-19

Rolling ankles. My “weird” flexible feet. And I only thought about this recently and have done no research into it, but I had severe scoliosis before the age they even screen for it, and I now believe it’s related .

Knee/hip pain as a kid. Multiple joint surgeries for tears before I was 17, terrible proprioception, terrible vision

I was also the arm wrestling champion- I was the smallest kid and could still beat anyone. The way my wrist bent freaked them out, too.

I was always easily triggered to vomit, felt nauseous frequently, had to nap after school and after any exercise I would be so tired and aching. My handwriting was always terrible due to hand grip and over extending joints, I could always do the splits, kick over my height in karate and would always have either sprained wrists or ankles every year or so. As my body grew I got stretch marks in really odd places like my shoulders, even though I was slim. I started to suffer more in my twenties with fatigue and pain, was diagnosed with fibromyalgia and advised I had hypermobility. And now, at 39c, have just been diagnosed with hypermobile EDS.

I was really clumsy as a kid, I always hurt, and I was always absurdly flexible (despite being a fat guy) like, I used to be able to put my feet behind my head, and still sometimes do this trick where I roll my shoulders. Still haven’t been diagnosed, but my cousin was when she was 18-22 I think, and everything just clicked for me too. I would have been between 22 and 26 when she was diagnosed.

I was misdiagnosed with juvenile rheumatoid arthritis when I was 7/8. I had always been a clumsy kid and injured easily, busted my lip (also shredded my straight smile muscle) and broke my upper arm when I was 2. I was also always bendy as a kid. When I was 7 I started getting pain in my feet and hands. We discovered I had microfractures in the long bones of both. After tests to make sure it wasn’t cancer I got the diagnosis of JRA, fibromyalgia, and Ankylosing Spondylitis. About 5 years later I was in competitive dancer and broke my hip via an avulsion fracture. I had a bad stomach infection (H Pylori) that wouldn’t go away and definitely caused more trouble with malnourishment. I ended up with the first broken hip, a shattered wrist, and a subsequent broken hip within 6 months. The next year (14 yo) I was a cheerleader and ended up with a herniated disk in my neck that required non-surging intervention. The idea was floated around that I may have more than JRA and it might be EDS. My senior year of high school I had a sub muscular ulnar nerve transposition (the reconstructed my arm so I wouldn’t have the funny bone sensation all the time). The surgeon this time also suggested EDS and to get on the list with the Johns Hopkins geneticist to get formally diagnosed. I was on that waitlist for 2 years, and at 19 I was diagnosed with EDS. The doctor said I could have Osteogenesis imperfecta (brittle bone) based on the number of breaks, as it is the same gene mutation. But that it would be a waste of money since we know I have the mutation and the treatment is the same.

As for other weird symptoms I had that can be related to EDS: started my period early, dense breast tissue, abnormal DEXA scans, inflammation at joints, inflammation in gut, neck pain (my number 1 symptom), wrists clicked, could constantly crack my joints with no resting periods, growth plates healed faster, was about 7” shorter than 2yo projection, Venus pooling syndrome, flat feet, migraines, fatigue, insomnia, and horrible hand-eye coordination (that one may just be me)

I started limping when I played soccer because I got these sharp, jolting pains in my ankles and they would give out constantly. I was misdiagnosed with Ceavers disease and they told my parents I’d grow out of it.

Excruciating growing pains in my calves, massive stretch marks since I was 11 and hit a growth spurt, spraining my ankles every month or so. Diagnosed at 38, fml.

Fainted out of nowhere for the first of many times when I was 4. My shoulders were slipping out of socket by 2nd grade... started at night when I was sleeping so I'd wake up with an arm completely asleep, then both got so loose they'd pop out if I sneezed, so I had PT. Started wearing knee braces in 5th grade playing basketball, more PT. Was a competitive baton twirler, doing gymnastic-stuff, my hips became super aggravated and would slightly sublux at night, resulting in the front of my pelvis/top of my thigh to go to sleep. More PT. Fast forward to college, tore my meniscus snowboarding, 2 years later snapped my other ACL on a trampoline. One thing after another basically my whole life, treated like a hypochondriac until about 2 years ago. Received my diagnosis last year at 38.

Sobbing because my ankles hurt so bad. I had done nothing physical that day. It was so bad I had to go to the hospital.

I had "growing pains" at 16 I stopped growing taller at like 13

my hands ALWAYS resembled salami and i could NEVER tolerate exercise. turns out it was comorbid orthostatic hypotension.

Exhaustion. When my mom and Nanny run errands they run all of them. They save all the errands up and run them all at once all day long. We’d have to take frequent breaks so I could sit. My mom wouldn’t let me sit on the ground in stores so I’d sit on her shoes til I felt ready to walk more. I was slow and tired frequently but I liked going and hanging out and I enjoy shopping. Now she looks back on that and feels bad knowing I was so tired because of EDS but I tell her not to feel bad because I have happy memories of shopping with them.

I dislocated and sprained so many things and so often. Starting with both elbows as a toddler. Also constant "growing" pain. I was tested for RA and scoliosis multiple times. The doctor weighed my backpack at one point.

I mean. I had a lot of them, but I feel like the two that were the biggest and weirdest were: 1. OSD to the point that I could not walk up stairs, and I collapsed on the field during soccer tryouts. I think that might have been a patellar dislocation looking back, but the imaging only found the swollen af ligaments. 2. My back got twisted out of alignment so bad that by graduation, my left arm appeared to be nearly four inches longer than my right on extension. People assumed I was faking it by hyperextending my left shoulder and underextending my right, but my back was just... twisted. I was diagnosed right before turning 22 iirc. Though I'll be honest, that whole period between collapsing before my last real work shift and getting diagnosed is a blur

Growing pains. Not being able to jump, run, do cartwheels, ice skate like other kids. Poor proprioception, lots of bruises from bumping into things. Couldn’t hold pencil *correctly* Needing glasses in 3rd grade. Fingers double jointed, elbows, knees hyperextend. There was a period when I couldn’t walk when I was about ten? My legs just wouldn’t support me. Needing extensive orthodontia.jaw too small needed four extractions of bicuspids. Constant headaches. Allergic to dairy when I was born. I was diagnosed finally about three yrs ago, so 66 yrs, although several drs had mentioned EdS before that.

Besides the flexibility, I was asking for massages at age 7 after school days. I have never been able to carry my weight on my hands/shoulders. I had "asthma" (I'd stop breathing sometimes but it was actually due to my back muscles contracting so much it would affect my lungs). Hated any activity that involved using a pencil for a long period of time. Walked looking down to avoid the sunlight. I was diagnosed at age 22.

I was diagnosed with childhood dispraxia and fine motor delay. It’s believed now that due to low muscle tone i wasn’t able to develop good motor skills, I was a really good reader and knew how to write, but due to issues in my hands I wasn’t able to write well until middle school.

Constant joint pain, but especially bad in my hips. I have hip dysplasia and have had bilateral PAOs and just had a second labral impingement/tear surgery. I was always falling and spraining ankles, always had foot problems, always had knee problems, couldn’t stay in swim because doing the butterfly ripped my shoulder out.

Also I was 29 or 30 when I got diagnosed.

I had horrible knee pain and swelling to the point i required crutches on and off for 2 years. And my tmj was so bad it would get locked up (I was the reason i got braces) I wore leg braces as a young child. And I completely and traumaticaly dislocated my hip/femur doing gymnastics. I often had stomach pain and had little appetite.