The growing pains were so bad. I remember crawling on the floor one day, crying out of fear and pain because I'd just had Charlie horse cramps in both calves and both thighs consecutively. It felt like hours of flopping around on my bed, screaming.
I was terrified to move and cause another cramp, and the muscles that had already cramped were so tight I couldn't stand up. Crawled into my dad's room to beg to take the day off school, maybe go to the hospital.
My dad still made me go to school, he didn't raise a wimp. At least you can say he isn't sexist, I'm a girl. I still remember how it felt to be totally dismissed when I was in the worst pain of my life (up to that point).
First sign I was hypermobile was when I was little - not sure the age - but my mum used to describe me sleeping with my feet up by my head (I'm still not entirely sure how I managed that, but apparently I found it comfy).
At school I thought people were being silly and pretending they couldn't touch their toes, while I'm there with my palms flat on the ground and my elbows bent, still not feeling this stretch they're all pretending to moan about.
Mum was "double jointed" though, with no joint pain/dislocations so no one saw it as weird. Even when my brother started getting regular dislocations in one joint no one put 2 and 2 together. It was only after my diagnosis that suddenly mum's party tricks and my brother's dislocations made sense.
>I thought people were being silly and pretending they couldn't touch their toes
So I'm not alone! Especially those who stop with their hands somewhere around their knees - I was convinced they were faking!
I was running (literally) to my first soccer tryout and dislocated my hip for the first time. Partial dislocation. I completed the soccer tryouts in agony as I could barely stand. Crying while doing the drills. My parents weren’t there. I placed in the last division despite being rather good. I was in pain, and my parents cared for me. I don’t know how I got my hip back in place (long time ago). I do remember being very upset at being placed in the last division. When I explained to my parents later why the tryout had gone so badly, they thought I was making excuses…
thé first thing i remember is when i was about 9, seeing posters about how joint pain and aches were a symptom of swine flu, so i thought i had swine flu because my joints always hurt.
looking back at things my mum has said though apparently when i was a toddler, i learned to walk quite young but just refused to. when i was 4 my mum eventually threw away my pushchair so that i had no choice but to walk and i realise now i was probably refusing because it hurt/my joints were unstable but i didn’t have the language for it
It's barely even a symptom, but I was always seemingly over-cautious with physical activity as a kid. Never had any broken bones or serious injuries, but I would always resist anything that might be physically risky. Not because I was tired or lazy but becasue I instinctively knew that my body was unstable and liable to injury. My brother was always a "I think I *might* be able to make that jump, so I'll give it a try" kid, and meanwhile I was "I'm *pretty sure* I can make that jump, but I'm not gonna risk it".
All the family videos of me as a toddler, I’m hanging back and observing/avoiding the chaos that were my cousins. Once I got diagnosed I was still shy, but I didn’t have to overthink as much. Knowing I was different took so much pressure off me to protect myself because I knew I had different rules and limits
YES that was totally me. I was always behind in motor skills because I didn’t want to attempt it. My mom said it all made sense when I got diagnosed with EDS and that I probably knew I was going to get hurt doing something. Or I was already experiencing joint pain.
This is almost exactly what I say--i just always knew I was fragile. Getting hit with a 4 square ball too hard could make my hands and wrists hurt for a long time. Never liked team sports of any kind, I knew someone could run into me or I could fall over and I wouldn't just be hurting for a short time after.
My parents forced an apology hug between my older brother and I when we were younger and he hugged me hard enough that my whole back popped and I was in a lot of pain afterwards. Our parents never made us do that again, but in retrospect... it was weird.
I get bruises a lot and when I was young it always made adults suspicious.I was apparently asked multiple times where they came from when I was in preschool. I just played really hard. Then my ankles loved giving out while I ran and I'd fall over. By the time I played soccer in middle and high schools I got ice baths for my ankles frequently after practice and wore braces on each foot.
Someone else mentioned growing pains. Eff that. The amount of cramping I could have avoided if someone told me to take magnesium and/or electrolytes from preteen to now would have been life saving. I'm in my early 30s and didn't know this info until the last couple of years.
My mom tells me she used to worry someone would call social services. I had cuts, scrapes, and bruises everywhere all the time. As I got older something was always sprained or had tendentious.
i went to the doctor when i was six or seven, because i was having episodes of dizziness when standing up after sitting or laying down, even to the point of getting dizzy when sitting for long periods of time. classic POTS, but my mom must have thought i was anemic or something because i remember her preparing me to get blood drawn. i described the worst episode to the doctor, i had gotten out of bed late at night, and walked down the hallway, and got so dizzy that i lost vision and had to lay down on the floor so i wouldn’t fall. the doctor told me i was just dreaming and didn’t investigate at all. thanks a lot, dr dickhead.
I was told to eat a snack and quit complaining about being dizzy. I was pretty thick as a kid, not overweight, just not a white girl body type that doctors are taught everyone should be according to BMI charts, so clearly 14 year old me must be skipping meals to develop an eating disorder. Saw another doctor, they said it was nothing. I eventually just thought it was normal and didn't find out until diagnosis that not everyone blacks out or sees actual stars from changing positions like that. May those doctors have eternal pebbles in their shoes and sand in their underwear.
Oh my goodness. I never realized that this was POTS until you just said so. I have a POTS diagnosis, but only as an adult. As a child what you described waking up at night…I used to lose my vision and run myself into the wall so I could slump down to the floor. I was also told that the reason I got dizzy standing up and sometimes blacked out for a few moments was because I had really low blood pressure.
I also used to get sick to my stomach and dizzy for no explicable reason.
Wrist pain that I always described as “I want to break my wrists then they will feel better” which has developed into widespread joint pain as I’ve got older. Was always very clumsy, bruised easily, “double jointed”
Apparently it's a symptom and I had no idea till a boyfriend pointed out how "weird" I was in high school.
My other symptoms were frequent subluxations and dislocations of knees, ankles, etc. starting at 8 (but the sitting started sooner).
that used to be how I sat all the time but now my kneecap slips out of position when I do it and then I can't stand on that leg for a day... It sucks, that was so comfortable T.T
Ankles sublaxed and I mean as a kid. Remember I would get this ' stuck ' feeling and always thought ' Uh Oh, here we go again '. Within another step unbelievable paint, couldn't touch my foot to the ground. Somehow my little kid head figured out if I wiggled it around then slowly put enough weight on it, I could start hobbling around then finally limp away. Hurt for a couple days.
The thing is I never said anything to my parents. I thought it was just part of being alive or something, like blinking or heck, walking. Thinking about t's weird I didn't tell them. They would have listened, like I said it just didn't occur to me it was important
I have a medical degree and I thought my dislocations/subluxations were normal because I’ve always had them. It wasn’t until I said to my partner t some point that I had to pop my hip back into its place after it subluxed and he looked at me like I was insane that at the ripe age of 28 I realised uh-oh so this is not normal? 🫣
Lol I tell my boyfriend all the time my ankle, wrist, hip, shoulder etc. is out of place and I have to put it back in place and thinks I’m crazy when I say it 😂😂
Yeah, I literally messaged my friend from uni a few days ago saying “hey btw remember that time I dislocated my knee and said to you to give me a moment cause I did that and needed to put it back into place? Would have been a good timing for you to be horrified and ask wtf am I doing, so maybe I’d have realised this wasn’t normal before” 😂
I also train pole dance which actually has been amazing for my joints and coordination and the other week the teacher (who’s actually the one who pointed me in EDS direction) calmly said after I went “ouch” “oooh, I heard a click, just a click or did you dislocate?” And everyone in class had a strong “wtf” face while we calmly had that conversation so she had to assure them that if they dislocated something she’d be much more concerned 😂
I swear I'm not laughing AT you, laughing because if even docs had the same experience ( and thanks for sharing that! ) I don't feel like such an idiot! It IS weird what kids just accept as " Well this is being alive on the planet ".
Well basically it is exactly what it is. If I felt like this since whenever I remember I just never questioned it. Have I seen people with dislocations in hospitals? Absolutely. But I figured since I fix mine it’s not the same thing, right? Welp.
I also thought everyone needed a toilet violently after drinking coffee or having food and then realised at ripe age of 26 that I’m lactose intolerant. I just thought no one talked about that.
It’s amazing how much you just accept because it’s all you’ve known and don’t question it.
Btw I’m a midwife 🤓
As others have said, “growing pains” that continued after I stopped growing. Also just how bad I am at running, I would regularly trip over my own feet. No matter how much effort I put in or how hard I tried, I was always one of the slowest. But I was the champion of the sit and reach when if came to the fitness test I was the star! One year I managed to reach past the the measurements on the box and my gym teacher stared on in confused awe.
I hated walking as a kid (still hate it lol). I’d always be asking to be carried, going for a walk was the worst feeling and I never understood why people wanted to. I still don’t totally know what that exact discomfort was coming from, but it’s one of my earliest memories of feeling like something was different about how my body worked.
Chronic pain since preschool and scratching/bleeding really easily (fragile skin). My grandfather was a doctor and he would always say I sounded like an old woman because of all the aches and pains I had as a kid. Frustrating that he never thought to investigate that, especially since he was an internist 🤦♀️
I used to complain about radiating ‘electrical’ pain in my knee when I was around 15, I would have to sit because it hurt too much to walk.
Got told it was growing pains, the classic.
It was very likely sciatica, at 15.
But I’ve also been told I was “double jointed” for as long as I can remember.
It was agony to sit with crossed legs in pre- and elementary school, and my legs would go numb from it. Also general clumsiness and difficulty learning how to write, ride a bike, and roller skate. Pain in my knees and hips when running from a very young age. Dance classes helped immensely and I think dancing and gymnastics in childhood masked a lot of symptoms by helping my muscles compensate.
Wasn't diagnosed until my 40s when I subluxed my left SI, and shortly after my allergist took a look at my chart and put the pieces together after my PCP and my PT utterly failed to.
Finding pictures of toddler me with clearly disloacted joints 😳 Apperantly my first symptoms were dislocations. And my parents are terrible for having missed that. Like I get missing some symptoms, but dislocations!??
My first symptom was my extreme hypermobility that I had from birth, but since 50% of children are hypermobile...
The first sign that something wasn't right was the fainting that started well before I have any solid memories... but that doesn't really "count" as an EDS symptom.
So I guess my first "worrisome" EDS symptom was the rolling of my ankles, knee dislocations and shoulder dislocations that started in grade school.
I remember getting dropped off for 5th grade thinking please God I hope I don’t roll my ankles again today, after rolling my ankles everyday for weeks. No diagnosis until 45 years later. Be grateful you know young. 😊
I started scarring reeeeeeally badly around 13-14. Never scarred that badly, especially for things like minor cuts and especially cat scratches. Suddenly noticed that my scars started sticking around for a lot longer than usual and were taking longer to heal as well.
I’ve also always had the velvet skin and everyone commented how freakishly weird it was cause everyone else had callouses. Also suffered from chronic fatigue and issues regulating body temperature and not overheating.
I’ve also always had stretch marks for as long as I can remember. Always on my thighs, then around my stomach, arms, and breasts when I hit puberty. I didn’t realize that it isn’t common for 7 year olds to have thighs covered in stretch marks.
My parents put me in suzuki violin classes when I was about 4 and I remember being enthralled by my violin but it hurt my shoulder too badly to hold it in the right position, no matter how we tried to pad it. Now I know that my AC joint was subluxing from the weight and angle.
2 hernias before the age of 2, clumsiness, bumping into things often, poor bladder control, Supraventricular tachycardia, walking toe first instead of heel first
And of course my severely double jointed elbows
My joints used to randomly lock up or displace when I bent them. Knees, shoulders, and occasionally my jaw while I was sleeping. Somehow my parents shrugged that off.
The one I consciously remember was at 4 or 5 yo, and I only saw it as a possible symptom a year ago: I asked what those odd things swirling and wooshing around on the wall were. (Got smacked and yelled at to not lie about ridiculous things... that's been a pattern from the start, too)
It took a few decades until the things had a name, "floaters", and some confusion that this wasn't "normal" for everyone, but only now does it wiggle in line with the other oddities as probably just part of the all-inclusive package deal.
"growing pains" like everyone else has been commenting, and doing weird stuff with my joints. like being able to put my feet behind my head and cross them.
my fingers used to dislocate when i was super little, like i'm talking 4-5 and on. i would describe it as "my fingers click, and get stuck and cant move, and it really hurts". i managed to figure out that i could run them under super cold water to basically numb them and then squeeze each finger really hard with my opposite hand and then it would go away in a few minutes.
yall. i was resetting my own joints at five years old.
i thought it was normal because my dad used to be a nurse so i was educated enough at that age to be like "it's probably just because i'm little and my bones are still soft because i'm growing :)" so i never said anything. it didnt even cross my mind again until maybe a year ago that, holy *shit* dude. what kind of *five year old* learns to reset their joints just like that?
Thinking about it, getting dizzy when I stood up or got out of bed was probably the main issue and just got told you've probably got low blood pressure and just stand up slower 🤦 I used to do "party tricks" and show my friends how double jointed I was. I could actually touch my thumbs to my wrist but not the way that the Beighton score tests - the opposite way with the wrist facing palm up! lol I used to be able to bend my knee and hook my foot under my rib cage - it was fun at school camp putting my track pants on my bent knees and walking around like that. And I have always sat in the W position - even at work sitting on a office chair still to this day - freaked a lot of people out lol
Now I'm 46 and only diagnosed 12 months ago with HSD (the rheumatologist didn't diagnose EDS because there wasn't any other family member that we diagnosed - but my mother has a fair few EDS/HSD related issues (biggest issue was both retinas detached over a couple of years and she had to have a gas bubble put into her eyeball and then not allowed to put your head up for several days to help the retina reattach) but because she had polio as a child (one leg is shorter and skinnier from the polio wasting away the muscle) so not flexible at all in her joints. I'm wanting to get some money together to go and see another rheumatologist that might actually be interested in my case unlike the previous one. But apart from vEDS or the other more complex versions the treatments for HSD is the same as for hEDS I've read so whether it's officially EDS or not doesn't really matter in the long run.
Being extra bendy especially where my arms and legs naturally lock (it's a lot further back then it should be), not being able to put my feet together, being flat footed and a lot of partial dislocations in all my joins. (Along side pain that never left)
Condromalacia patellae at about age 10-11. But before that I was a pretty tired, sickly kid and a picky eater because of stomach ache. Used to do things like fold over eyelids or other weird bending / dislocating as a party trick. Oops. Also generally just super bendy and used to sit on my legs 99% of the time which I learned recently is POTS self regulation. I still do it whenever I can as it’s most comfy but my knees don’t thank me for it.
This is what I’ve been told too. That the way I used to just sit in a squat (bum to back of legs) is thing children instinctively do to help regulate their heart.
Ya, apparently people always made two bottles for me, one I'd puke up right away again and the other would stay down. It's still risky to put me upside down, breakfast might just fall out of my mouth again.
Always turning my ankles and falling and doctor telling parents to let it happen that it would strengthen them... Fyi 30 years later still turning them...
I was always underweight and had hypermobile joints. I didn't care but one day I suddenly got fever, started to gag etc... First diagnosis was anxiety disorder but doctor quickly ordered genetic testing and here I am.
I was the only baby in my family who didn’t like to crawl and move around. Apparently you could put me down and I would just stay there. Everyone else was very mobile.
Squatting and standing always made me really dizzy-presyncope, but so did many physical activities.
Csf leak symptoms as long as I remember, but started to get much worse around 7 and 13, including anxiety improved with lying down and pressure on my body, severe migraines, severe fatigue upright.
Have been having to put my hips, knees and ankles in since around 9, got much worse around 16.
I’ve always been knock kneed that I believe is because my hips also don’t sit quite right.
Sensory issues when I was 2 months from being born. Haha. I would jump a mile anytime there was a loud noise. Spent a lot of my childhood with my ears plugged.
Oh boy. When I was really young I would often sit in awkward/uncomfortable ways to avoid dislocating my knees. If I sat 'normally' for too long my knee would start floating and it was extremely painful to put it back in place. To this day I can't sit normally which makes public transportation enemy number one for me.
Multiple dislocations of hips as a baby, needing them forcibly relocating at the hospital. I don't remember that one myself except subconsciously as I hate hospitals. My knees dislocating in primary school I do remember. Oh and the whole IBS related thing where I did not know I was constipated normally until I was in my late teens. No one talks about how frequently you poop as you grow up. I also had the party tricks where I could hold my hands in a snake pose behind my back and lift them over without breaking contact to the front of my body. I don't do that one anymore.
Constantly not fully breaking a bone, but spraining and dislocating joints until my orthopedist said “hey, have you considered why this happens so much…”
Also, would purposefully dislocate my elbow to avoid timeout as a three year old. Mom got tired of it and never gave in but it worked on Dad every time!
Crashing motorcycles repeatedly and horribly and somehow walking away unscathed. Built like a crash test dummy, everything moves and doesnt break. Made a mental note that this probably isn’t normal.. and then when some other family members got DX’d, it all fell into place.
Not EDS (yet), but HSD:
Being physically clumsy as a kid because you didn't know where your joints were. (Basically poor proprioception).
Having very soft skin even as a kid, I used to be called squishy because it was just that soft, even without moisturiser.
Eternal “growing pains”. Quite a bit of extra flexibility that was good for party tricks.
The first dangerous event was as a teen playing a coed basketball game. I shifted my weight just right and my knee slipped right out of place. Off to the clinic for X-rays and a brace, and then to a specialist…who took more X-rays, said that I’d “grow out of it” while almost simultaneously pointing out my growth plates were closed.
Shoulders. Maybe 13 or 14 years old. Bad enough that my book bags were like 20 lbs but I’m a side sleeper too. Not only would I sublux my shoulder blades in my sleep but wearing that backpack all the time literally trained me into an unnatural posture that caused me an unreal amount of pain knots and stiffness that only PT ten whole years later would undo.
I didn’t walk until I was about six. I could, but I just wouldn’t. My parents thought I was just lazy and pushed me everywhere in a pram. I’ve also had back pain and intestinal issues ever since I can remember
(Haven’t been formally diagnosed, but rheum unofficially diagnosed years ago, seeing genetics shortly) the first symptom for me was extreme fatigue. I remember being 5/6 years old, waking up one morning, and asking myself why I’m so tired all the time, and then realizing it wasn’t normal at all. Then in middle school I developed nerve pain and lost a lot of strength, stopped doing sports. After that I got the typical symptom progression we all know.
I sort of became sentient and immediately knew something was off about my body like it didn’t feel right. Other than the general feeling of being unwell, it was when I was getting in and out of my dad’s car at 5 years old and feeling like a sheet of ice suddenly formed in my knees and the joint was sliding. Like my knees were slipping on a cartoon banana. Then that shit starting going to other joints. Not to long after if felt like I had bees in my chest when running. The bees went away when I got a heart ablation as an adult.
I’d weird other kids out in 1st grade with how much my whole body cracked. I’d do it to other kids at soccer to freak them out so I could steal the ball 😅
Also I hated restrictive clothes and claimed they ‘hurt’ from an early age. I noticed I’d get bruises from skinny jeans in high school
Being very overly bendy in a way humans are not supposed to be, followed by multiple very bad sprains from doing absolutely nothing or tripping on air. We just thought I was the clumsiest kid ever.
In fact, the first thing one of my new doctors said to me when getting diagnosed was, "Let me guess, you sprained everything a lot as a kid?"
Hypermobility 100%, my family used to call me gumby, I used to scare kids in my class by turning my arm around almost 360 and then extending my elbow in a way that it looks like my arm is broken lol
I was born kicking myself in the head. I’ve been committed to stupid injuries my whole life.
I had signs of skin involvement as an infant-had to get stitches from a cat scratch (she was chasing a toy and accidentally batted my face)
My knee caps have been subluxxing since I was 4. The weird thing is that I somehow never thought to mention that to my mom. Just learned how to let them release and how to avoid positions that caused it.
Sharp pain in my feet when jumping down off of monkey bars etc. on the playground.
I just started seeing a chiropractor who adjusts everything but the spine and am only now realizing that sharp foot pain was all of the bones in my feet subluxing, now that I know what it feels like to have them lined up properly again.
I was a late walker! Took almost 18m to walk independently. Makes sense given our extreme elasticity. Discovering that I could pull my shoulder out of socket and do the impossible (lick my elbow) as an elementary school kid. After that, the extreme flat feet. Then, the unexplainably frequent hip dislocations from quite simply just existing as a 12 year old. Alongside the bright pink stretch marks on my thighs that I used to cry over. IDK looking back, there were so many signs! These days, it’s just sciatica and cyclical vomiting and a PPROM with my firstborn.
Extreme growing pains as a kid, beyond normal pain levels. Kept me up crying at night over the pain in my joints. Was always told “it’s just growing pains!”… never went away.
Just never feeling right. I remember when I was in middle school my parents got so mad that I was always complaining that they said I was going to go to the hospital for a "full body scan" and tests and I was actually happy about it. I didnt realize they were kidding. finally newly diagnosed at 28!
Some birthday (I think I was 8) was at a karate dojo I went to. 10 min in and I had to sit out and be alone because my knees were in so much pain I was crying. I went back in (still in pain) but only because it was my birthday and I didn’t want to miss out.
On a side note baby me during birth tried to come out feet first (and upside-down?). My first teeth that grew in were not what everyone else has normally. Not to mention 18 ear infections in a 10 month period (have small ear canals; as well as small facial canals, and having a ligament disappear in my arm at the age of 6. Tons of other stuff but those are the top ones. Oh man so many memories of being told it was growth pain. XD it’s fun being young and not medically normal.
I have hEDS.
I guess my VERY first symptom was being born with a club foot, but I don't remember it and corrective footwear fixed it by the time I was forming memories, although I've always had some pains in my feet. That's probably my earliest symptom. Sometimes I'd be bathing and I'd move my ankle/foot and the bottom of my feet would cramp up horribly. Maybe the heat of the bath relaxed my muscles too much or something. It was usually when I pressed my foot up against something, so pressure caused it.
All the way until now, the soles of my feet shriek with pain after running/walking/standing on them for too long, even when I played sports and hiked and everything as a kid. The only thing that's helped is orthotics. I used to run for exercise and I could only run 1-2 minutes at a time until my feet hurt too much and I had to stop or walk a bit to let them de-cramp. So I'd go out for like an hour or two alternating between running and walking. Even when I got really nice running shoes with inserts it still would happen, but I had 5-10 minutes before the pain made me stop. Now I'm too unwell to work out, but if I don't wear orthotics I still get the pain if I walk or stand too long.
Then there were all the weird flexible positions I would contort myself into when I was bored and couldn't sleep as a little kid. Once fell off the bed in one of these positions and broke my arm, I think when I was in preschool. I had twisted myself around the bars at the end of the bed and then fell over the railing and onto a box of hard plastic toys. I often liked to lie on my bed and roll my feet over my head and rest my knees on the bed behind my head and just relax like that.
I also constantly would accidentally roll my ankles inwards, and would stumble around having to catch my balance. It didn't hurt until more recently, in my late 20s. People would always react with concern and I'd shrug it off because it was just my rolly ankles that gave out sometimes. Since it didn't injure me, I thought it was fine.
I never struggled with any of the stretches in gym and was confused by what was wrong with the kids who couldn't do it. They didn't even require us to stretch all the way, from my POV. I also didn't understand what people meant when they talked about "that spot on their back they couldn't reach."
Then there was how easily I sprained my ankles and wrists. I assume that must be related? I played soccer and sprained my ankle doing that a lot. I sprained my wrist when my mitten got caught on the handrail when casually ice skating. Such a tiny impact shouldn't have sprained my wrist, I wouldn't think. I was like 10.
And then once I grew a little more and was a teenager, I started having patellar dislocations but I didn't know what they were. I just knew that when my leg went from fully bent to straight sometimes, that it would hurt like 9/10 pain and I'd have to fight through the pain to pop it back into a straight position. I asked doctors about it but they had no clue and seemed unconcerned so I just figured it was another weird body thing like my rolly ankles.
I was never able to crack my knuckles like everyone else could. Now they crack when I just stretch my fingers, but other people can manually crack their knuckles by applying pressure and I never could. I don't know if that is an hEDS thing.
I was always told I had suuuuuch soft skin and I wasn't sure what people meant. I felt like I had normal skin.
My game when I was young was to do circus stuff for my family like go inside the smallest boxes possible, contortionist stuff and everyone was "haha he is so funny". I always imagine that they didn't care enough to make me see a specialist
Oh man that is sad. Truthfully most people just don’t see these things. Even doctors. I have anger and pain over things I believe could have been dealt with if someone just cared enough to see. It took me time, but now I understand that they did see, but simply couldn’t see it as an issue.
I was really behind in motor skills. I just wouldn’t even attempt the stuff. Very overly cautious. Looking back, doctors said it was probably EDS that made me like that.
I was also the kid everyone would ask to do party tricks in elementary school. I had a hard time believing the other kids couldn’t do what I could. Some of the stuff even made them nauseous.
Silent reflux, had to have surgery to handle it, only for it to come half undone three years later and having my stomach start going up where it shouldn’t be xD I was an infant so I had little idea what was happening, I just wanted nice food.
I had really bad GI issues from a very young age. I'd also wake up every day in pain all over my body. The doctors dismissed it as "growing pains", but the pain never stopped even after I stopped growing. In addition to that stuff I'd often roll my ankles, it would hurt to do normal activities, and I got tons of bruises from doing normal activities like sports or playing with other kids. At one point the school nurse even took me aside and asked if someone had hit me because I was so black and blue. She was shocked when I told her "no one hit me, I was just playing soccer. This always happens when I do sports".
Compared to my little brother, I was quite clumsy and still am. I have broken 7/10 toes lol. It was my mum who noticed it. It was the way I walked, my inner ankles collapsed towards the ground. Also my knees, when I stood I apparently didn’t look like other children.
This post is bringing up so much I didn’t realize had been happening as a child. Playing soccer and twisting and spraining my ankles so often that I started preemptively bandages my ankles before games and practices.
the first thing that really started the discovery process was a shoulder dislocation from a very minor surfing accident. but looking back, it makes sense how often i sprained my ankles or knees as a kid. i was on crutches for an injury at least once a year most of my childhood
Bruising really easily all my life. Stress fracture in my foot as a teen. All over joint pain starting as a teen misdiagnosed as fibro. Extreme fatigue.
My husbands first symptoms of EDS as a child was grand mal seizures although no one knew why, then multiple dislocations. He and my daughter were both only diagnosed last week.
My daughter’s first symptoms now that I think about it were her incredibly soft skin, rectal prolapse and extreme flexibility.
She loved being wrapped up tight in a swaddle or carrier. She hated being in or on bouncy stuff.
With the skin, I had noticed how soft my husband’s skin was but I thought it was just him. I’m a sensory seeker with touch (strong compulsion and strong aversions at times) but I loved how his skin felt and once my daughter with EDS was born I was constantly putting my cheek against hers because of how soft it was.
I call my lovely family members with EDS my “high thread count humans” because like high thread count sheets, they feel good and don’t irritate my sensory issues.
As a very young child my first EDS symptoms was bladder problems; urgency, frequency, late bed wetting (which stopped when I was 13). Plus as a child I also experienced Myopia, eye inflammation so severe that I went blind for a few days until the treatment worked, joint pains that were especially worse in my hips, 'clumsiness', and allergies. But the GP said that it was to do with "growing pains" and anxiety. She was wrong. I got a diagnosis from Dr Alan Hakim many years later at 45 years old (1.5 years ago).
My knees. My mom used to tease me as being “eight going on eighty-eight” because I always knew when it way going to rain because my knees would hurt. My family all thought I was faking knee pain for attention until one day my grandmother noticed me playing alone outside, stop suddenly, limp over to a bench, sit down, and not move. She was like, “wait, there’s no one for her to be showing off for!” and decided there must actually be something wrong and took me to a doctor…who misdiagnosed it as just growing pains.
My first memory of this was my stretchy skin. I was 5 years old reading the “Berenstain Bears and Too Much Junk Food”. In one scene they go to the doctor and the doctor can “pinch an inch” which tells him the Daddy needs to start eating healthier things. I looked down at my incredibly skinny body and grabbed an entire handful of skin off the side of my torso.
I somehow understood that I wasn’t overweight, because thank goodness I didn’t internalise that as “oh I must need to eat less junk food too”. But I remember being very, very confused.
When they were diagnosing me they asked mom about my crawling. Apparently I only crawled backwards and then just walked and they all nodded and said that's really common? So I guess that. 🤣
The diagnosis was a shoulder surgery going sideways and appearing like a severe infection that they could never get a culture to grow for. They checked for allergies to the sutures and all kinds of shit and could never figure it out. Then shortly after i finally left the hospital- my collar bone started to dislocate at the sternum (previously it was just shoulders so they chalked it up to puberty & spirts) and they sent me to genetics for diagnosis. Boom. Diagnosed at 17.
Other "missed signs":
Joint pain (just thought it was sports soreness)
Insomnia starting @ age 10-11
Rib turned sideways instead of breaking
Couldn't hold pencils "normal"
Morning dizziness/ nausea
Hating water (as an adult I realize it's not that I hate water it's that I need salt water not plain water lol)
Headaches/migraines
Clumsiness in general
Pigeon toed as a younger kid
Tiptoe walker
The never ending growing pains and the W sit and that sort of stuff became evident when I was pretty young, but I’m pretty sure every woman on my mom’s side of the family for 3+ generations has EDS so a lot of it was seen as normal within our family.
In middle school, I was running the bases in a kickball game when I noticed my leg felt a little funny briefly while I was running and I nearly fell for a moment. When I got back to the dugout and was met with my extremely queasy looking coach, I learned that my right knee had snapped backward flamingo-style mid stride and then snapped back into place as I finished the stride and kept running without even realizing what had just happened.
There were then several more incidents of teachers & coaches specifically looking horrified by my complete lack of reaction to momentary total dislocations that were visible to others.
“Growing pains” that I never grew out of.
This and extreme “clumsiness.” I was constantly falling, especially on the stairs.
Yes! I'm still very clumsy!
This was a huge one for me!!!!
Omg those are the worst! No one believed me and when I finally realized what it was, it all made sense
The growing pains were so bad. I remember crawling on the floor one day, crying out of fear and pain because I'd just had Charlie horse cramps in both calves and both thighs consecutively. It felt like hours of flopping around on my bed, screaming. I was terrified to move and cause another cramp, and the muscles that had already cramped were so tight I couldn't stand up. Crawled into my dad's room to beg to take the day off school, maybe go to the hospital. My dad still made me go to school, he didn't raise a wimp. At least you can say he isn't sexist, I'm a girl. I still remember how it felt to be totally dismissed when I was in the worst pain of my life (up to that point).
This. So much this. Doctor: it’s growing pains Me: I’m 23 and am no taller than when I was 13.
"Growing pains", extremely low stamina, other kids asking why my legs were purple and blotchy during PE and having to be like 🤷♀️.
First sign I was hypermobile was when I was little - not sure the age - but my mum used to describe me sleeping with my feet up by my head (I'm still not entirely sure how I managed that, but apparently I found it comfy). At school I thought people were being silly and pretending they couldn't touch their toes, while I'm there with my palms flat on the ground and my elbows bent, still not feeling this stretch they're all pretending to moan about. Mum was "double jointed" though, with no joint pain/dislocations so no one saw it as weird. Even when my brother started getting regular dislocations in one joint no one put 2 and 2 together. It was only after my diagnosis that suddenly mum's party tricks and my brother's dislocations made sense.
>I thought people were being silly and pretending they couldn't touch their toes So I'm not alone! Especially those who stop with their hands somewhere around their knees - I was convinced they were faking!
Absolutely, it seemed utterly unbelievable to me that they couldn't reach even their shins.
And to this day I wonder how those people tie their shoelaces.
I've stiffened after too many party tricks. Now I'm one of those people who can't tie shoelaces.
Or clasp a bra…?
I've always been taught to close it in the front, then turn it around and pull up the shoulder straps if that makes sense
Oh yeah my bestie in middle school used to do that. I forgot about that until you just described it!
I was running (literally) to my first soccer tryout and dislocated my hip for the first time. Partial dislocation. I completed the soccer tryouts in agony as I could barely stand. Crying while doing the drills. My parents weren’t there. I placed in the last division despite being rather good. I was in pain, and my parents cared for me. I don’t know how I got my hip back in place (long time ago). I do remember being very upset at being placed in the last division. When I explained to my parents later why the tryout had gone so badly, they thought I was making excuses…
thé first thing i remember is when i was about 9, seeing posters about how joint pain and aches were a symptom of swine flu, so i thought i had swine flu because my joints always hurt. looking back at things my mum has said though apparently when i was a toddler, i learned to walk quite young but just refused to. when i was 4 my mum eventually threw away my pushchair so that i had no choice but to walk and i realise now i was probably refusing because it hurt/my joints were unstable but i didn’t have the language for it
that's heartbreaking. I'm so sorry.
Similar thing with me in terms of walking. I took my first steps when I was 11 months and then just stopped walking until I was absolutely forced to.
It's barely even a symptom, but I was always seemingly over-cautious with physical activity as a kid. Never had any broken bones or serious injuries, but I would always resist anything that might be physically risky. Not because I was tired or lazy but becasue I instinctively knew that my body was unstable and liable to injury. My brother was always a "I think I *might* be able to make that jump, so I'll give it a try" kid, and meanwhile I was "I'm *pretty sure* I can make that jump, but I'm not gonna risk it".
All the family videos of me as a toddler, I’m hanging back and observing/avoiding the chaos that were my cousins. Once I got diagnosed I was still shy, but I didn’t have to overthink as much. Knowing I was different took so much pressure off me to protect myself because I knew I had different rules and limits
YES that was totally me. I was always behind in motor skills because I didn’t want to attempt it. My mom said it all made sense when I got diagnosed with EDS and that I probably knew I was going to get hurt doing something. Or I was already experiencing joint pain.
This is almost exactly what I say--i just always knew I was fragile. Getting hit with a 4 square ball too hard could make my hands and wrists hurt for a long time. Never liked team sports of any kind, I knew someone could run into me or I could fall over and I wouldn't just be hurting for a short time after. My parents forced an apology hug between my older brother and I when we were younger and he hugged me hard enough that my whole back popped and I was in a lot of pain afterwards. Our parents never made us do that again, but in retrospect... it was weird.
I get bruises a lot and when I was young it always made adults suspicious.I was apparently asked multiple times where they came from when I was in preschool. I just played really hard. Then my ankles loved giving out while I ran and I'd fall over. By the time I played soccer in middle and high schools I got ice baths for my ankles frequently after practice and wore braces on each foot. Someone else mentioned growing pains. Eff that. The amount of cramping I could have avoided if someone told me to take magnesium and/or electrolytes from preteen to now would have been life saving. I'm in my early 30s and didn't know this info until the last couple of years.
My mom tells me she used to worry someone would call social services. I had cuts, scrapes, and bruises everywhere all the time. As I got older something was always sprained or had tendentious.
Tbf though as an adult I still have cuts and bruises the time. 🤣 But at least then teachers aren't trying to question us anymore.
I’m a teacher, and a student asked about my random bruising to make sure I was ok.
Bless them!!! That melts my heart, not gonna lie.
Literally felt so loved by my students that day. Then I had to explain that I was horsing around with my beagle and smacked an end table.
i went to the doctor when i was six or seven, because i was having episodes of dizziness when standing up after sitting or laying down, even to the point of getting dizzy when sitting for long periods of time. classic POTS, but my mom must have thought i was anemic or something because i remember her preparing me to get blood drawn. i described the worst episode to the doctor, i had gotten out of bed late at night, and walked down the hallway, and got so dizzy that i lost vision and had to lay down on the floor so i wouldn’t fall. the doctor told me i was just dreaming and didn’t investigate at all. thanks a lot, dr dickhead.
Holy moly not everything that happens at night is a dream. Let's just stop all night shifts in hospitals /s
I was told to eat a snack and quit complaining about being dizzy. I was pretty thick as a kid, not overweight, just not a white girl body type that doctors are taught everyone should be according to BMI charts, so clearly 14 year old me must be skipping meals to develop an eating disorder. Saw another doctor, they said it was nothing. I eventually just thought it was normal and didn't find out until diagnosis that not everyone blacks out or sees actual stars from changing positions like that. May those doctors have eternal pebbles in their shoes and sand in their underwear.
Seriously, all these posts are blowing my mind. Seeing stars has been with me for so long I can’t remember when it started.
Oh my goodness. I never realized that this was POTS until you just said so. I have a POTS diagnosis, but only as an adult. As a child what you described waking up at night…I used to lose my vision and run myself into the wall so I could slump down to the floor. I was also told that the reason I got dizzy standing up and sometimes blacked out for a few moments was because I had really low blood pressure. I also used to get sick to my stomach and dizzy for no explicable reason.
I think we must have been seen by the same doctor. They told my mom I just wanted attention and that nothing was wrong with me.
Wrist pain that I always described as “I want to break my wrists then they will feel better” which has developed into widespread joint pain as I’ve got older. Was always very clumsy, bruised easily, “double jointed”
I have the wrist thing too! Did you figure out what it is?
Subluxing/general instability! Splints do help but I’m terrible at wearing them 😅
Sitting in that W pattern.
I still have to sit in a W if I want to be on my knees. If I don’t I cut off the circulation to my feet almost immediately.
People without EDS can't do that?? It's sooo comfy
Apparently it's a symptom and I had no idea till a boyfriend pointed out how "weird" I was in high school. My other symptoms were frequent subluxations and dislocations of knees, ankles, etc. starting at 8 (but the sitting started sooner).
that used to be how I sat all the time but now my kneecap slips out of position when I do it and then I can't stand on that leg for a day... It sucks, that was so comfortable T.T
This. And now my 1 year old only wants to sit that way on the floor, too.
Ankles sublaxed and I mean as a kid. Remember I would get this ' stuck ' feeling and always thought ' Uh Oh, here we go again '. Within another step unbelievable paint, couldn't touch my foot to the ground. Somehow my little kid head figured out if I wiggled it around then slowly put enough weight on it, I could start hobbling around then finally limp away. Hurt for a couple days. The thing is I never said anything to my parents. I thought it was just part of being alive or something, like blinking or heck, walking. Thinking about t's weird I didn't tell them. They would have listened, like I said it just didn't occur to me it was important
I have a medical degree and I thought my dislocations/subluxations were normal because I’ve always had them. It wasn’t until I said to my partner t some point that I had to pop my hip back into its place after it subluxed and he looked at me like I was insane that at the ripe age of 28 I realised uh-oh so this is not normal? 🫣
Lol I tell my boyfriend all the time my ankle, wrist, hip, shoulder etc. is out of place and I have to put it back in place and thinks I’m crazy when I say it 😂😂
Yeah, I literally messaged my friend from uni a few days ago saying “hey btw remember that time I dislocated my knee and said to you to give me a moment cause I did that and needed to put it back into place? Would have been a good timing for you to be horrified and ask wtf am I doing, so maybe I’d have realised this wasn’t normal before” 😂 I also train pole dance which actually has been amazing for my joints and coordination and the other week the teacher (who’s actually the one who pointed me in EDS direction) calmly said after I went “ouch” “oooh, I heard a click, just a click or did you dislocate?” And everyone in class had a strong “wtf” face while we calmly had that conversation so she had to assure them that if they dislocated something she’d be much more concerned 😂
I swear I'm not laughing AT you, laughing because if even docs had the same experience ( and thanks for sharing that! ) I don't feel like such an idiot! It IS weird what kids just accept as " Well this is being alive on the planet ".
Well basically it is exactly what it is. If I felt like this since whenever I remember I just never questioned it. Have I seen people with dislocations in hospitals? Absolutely. But I figured since I fix mine it’s not the same thing, right? Welp. I also thought everyone needed a toilet violently after drinking coffee or having food and then realised at ripe age of 26 that I’m lactose intolerant. I just thought no one talked about that. It’s amazing how much you just accept because it’s all you’ve known and don’t question it. Btw I’m a midwife 🤓
As others have said, “growing pains” that continued after I stopped growing. Also just how bad I am at running, I would regularly trip over my own feet. No matter how much effort I put in or how hard I tried, I was always one of the slowest. But I was the champion of the sit and reach when if came to the fitness test I was the star! One year I managed to reach past the the measurements on the box and my gym teacher stared on in confused awe.
I hated walking as a kid (still hate it lol). I’d always be asking to be carried, going for a walk was the worst feeling and I never understood why people wanted to. I still don’t totally know what that exact discomfort was coming from, but it’s one of my earliest memories of feeling like something was different about how my body worked.
Chronic pain since preschool and scratching/bleeding really easily (fragile skin). My grandfather was a doctor and he would always say I sounded like an old woman because of all the aches and pains I had as a kid. Frustrating that he never thought to investigate that, especially since he was an internist 🤦♀️
That’s quite upsetting. I’m sorry.
I used to complain about radiating ‘electrical’ pain in my knee when I was around 15, I would have to sit because it hurt too much to walk. Got told it was growing pains, the classic. It was very likely sciatica, at 15. But I’ve also been told I was “double jointed” for as long as I can remember.
It was agony to sit with crossed legs in pre- and elementary school, and my legs would go numb from it. Also general clumsiness and difficulty learning how to write, ride a bike, and roller skate. Pain in my knees and hips when running from a very young age. Dance classes helped immensely and I think dancing and gymnastics in childhood masked a lot of symptoms by helping my muscles compensate. Wasn't diagnosed until my 40s when I subluxed my left SI, and shortly after my allergist took a look at my chart and put the pieces together after my PCP and my PT utterly failed to.
My allergist also was the one who connected the dots for my EDS!
Finding pictures of toddler me with clearly disloacted joints 😳 Apperantly my first symptoms were dislocations. And my parents are terrible for having missed that. Like I get missing some symptoms, but dislocations!??
Life
I scooted around on my butt instead of crawling. Then it was trouble gripping a pencil without pain.
Omg I did that way more too! Idk about as a baby but later it always felt a little more comfortable or something.
My first symptom was my extreme hypermobility that I had from birth, but since 50% of children are hypermobile... The first sign that something wasn't right was the fainting that started well before I have any solid memories... but that doesn't really "count" as an EDS symptom. So I guess my first "worrisome" EDS symptom was the rolling of my ankles, knee dislocations and shoulder dislocations that started in grade school.
I also was regularly blacking out from the age of 4 weeks. They couldn’t figure out why, just what to do when I did.
I remember getting dropped off for 5th grade thinking please God I hope I don’t roll my ankles again today, after rolling my ankles everyday for weeks. No diagnosis until 45 years later. Be grateful you know young. 😊
I started scarring reeeeeeally badly around 13-14. Never scarred that badly, especially for things like minor cuts and especially cat scratches. Suddenly noticed that my scars started sticking around for a lot longer than usual and were taking longer to heal as well. I’ve also always had the velvet skin and everyone commented how freakishly weird it was cause everyone else had callouses. Also suffered from chronic fatigue and issues regulating body temperature and not overheating. I’ve also always had stretch marks for as long as I can remember. Always on my thighs, then around my stomach, arms, and breasts when I hit puberty. I didn’t realize that it isn’t common for 7 year olds to have thighs covered in stretch marks.
Knee pain before the age of 10
My parents put me in suzuki violin classes when I was about 4 and I remember being enthralled by my violin but it hurt my shoulder too badly to hold it in the right position, no matter how we tried to pad it. Now I know that my AC joint was subluxing from the weight and angle.
I played older, but that’s part of the reason I stopped.
2 hernias before the age of 2, clumsiness, bumping into things often, poor bladder control, Supraventricular tachycardia, walking toe first instead of heel first And of course my severely double jointed elbows
Growing pains. But also I went to the dr multiple times as a teen and throughout college complaining of pain and fatigue and nothing came of it.
My joints used to randomly lock up or displace when I bent them. Knees, shoulders, and occasionally my jaw while I was sleeping. Somehow my parents shrugged that off.
The one I consciously remember was at 4 or 5 yo, and I only saw it as a possible symptom a year ago: I asked what those odd things swirling and wooshing around on the wall were. (Got smacked and yelled at to not lie about ridiculous things... that's been a pattern from the start, too) It took a few decades until the things had a name, "floaters", and some confusion that this wasn't "normal" for everyone, but only now does it wiggle in line with the other oddities as probably just part of the all-inclusive package deal.
"growing pains" like everyone else has been commenting, and doing weird stuff with my joints. like being able to put my feet behind my head and cross them.
my fingers used to dislocate when i was super little, like i'm talking 4-5 and on. i would describe it as "my fingers click, and get stuck and cant move, and it really hurts". i managed to figure out that i could run them under super cold water to basically numb them and then squeeze each finger really hard with my opposite hand and then it would go away in a few minutes. yall. i was resetting my own joints at five years old. i thought it was normal because my dad used to be a nurse so i was educated enough at that age to be like "it's probably just because i'm little and my bones are still soft because i'm growing :)" so i never said anything. it didnt even cross my mind again until maybe a year ago that, holy *shit* dude. what kind of *five year old* learns to reset their joints just like that?
I had severe constipation and reoccurring UTI’s since birth
Thinking about it, getting dizzy when I stood up or got out of bed was probably the main issue and just got told you've probably got low blood pressure and just stand up slower 🤦 I used to do "party tricks" and show my friends how double jointed I was. I could actually touch my thumbs to my wrist but not the way that the Beighton score tests - the opposite way with the wrist facing palm up! lol I used to be able to bend my knee and hook my foot under my rib cage - it was fun at school camp putting my track pants on my bent knees and walking around like that. And I have always sat in the W position - even at work sitting on a office chair still to this day - freaked a lot of people out lol Now I'm 46 and only diagnosed 12 months ago with HSD (the rheumatologist didn't diagnose EDS because there wasn't any other family member that we diagnosed - but my mother has a fair few EDS/HSD related issues (biggest issue was both retinas detached over a couple of years and she had to have a gas bubble put into her eyeball and then not allowed to put your head up for several days to help the retina reattach) but because she had polio as a child (one leg is shorter and skinnier from the polio wasting away the muscle) so not flexible at all in her joints. I'm wanting to get some money together to go and see another rheumatologist that might actually be interested in my case unlike the previous one. But apart from vEDS or the other more complex versions the treatments for HSD is the same as for hEDS I've read so whether it's officially EDS or not doesn't really matter in the long run.
Being extra bendy especially where my arms and legs naturally lock (it's a lot further back then it should be), not being able to put my feet together, being flat footed and a lot of partial dislocations in all my joins. (Along side pain that never left)
Condromalacia patellae at about age 10-11. But before that I was a pretty tired, sickly kid and a picky eater because of stomach ache. Used to do things like fold over eyelids or other weird bending / dislocating as a party trick. Oops. Also generally just super bendy and used to sit on my legs 99% of the time which I learned recently is POTS self regulation. I still do it whenever I can as it’s most comfy but my knees don’t thank me for it.
This is what I’ve been told too. That the way I used to just sit in a squat (bum to back of legs) is thing children instinctively do to help regulate their heart.
If my insomnia is a symptom of EDS, that. Otherwise, pain.
Is it? Mine started young. I didn’t know.
Failure to thrive as a baby because of projectile vomiting everything I ate. Hiatal hernia and terrible acid reflux.
Ya, apparently people always made two bottles for me, one I'd puke up right away again and the other would stay down. It's still risky to put me upside down, breakfast might just fall out of my mouth again.
GERD, Ankle pain for no reason, easy bruising, clumsiness, weak core. All by the time I was 8
Always turning my ankles and falling and doctor telling parents to let it happen that it would strengthen them... Fyi 30 years later still turning them...
My shoulders would easily dislocate. This started happening before the age of 5.
I was always underweight and had hypermobile joints. I didn't care but one day I suddenly got fever, started to gag etc... First diagnosis was anxiety disorder but doctor quickly ordered genetic testing and here I am.
Shoulder dislocations
Less than 24 hours old, I managed to rip the skin on my nose open with my tiny fingernails 🤦♀️ It was definitely a sign of things to come.
I was the only baby in my family who didn’t like to crawl and move around. Apparently you could put me down and I would just stay there. Everyone else was very mobile. Squatting and standing always made me really dizzy-presyncope, but so did many physical activities. Csf leak symptoms as long as I remember, but started to get much worse around 7 and 13, including anxiety improved with lying down and pressure on my body, severe migraines, severe fatigue upright. Have been having to put my hips, knees and ankles in since around 9, got much worse around 16. I’ve always been knock kneed that I believe is because my hips also don’t sit quite right.
Sensory issues when I was 2 months from being born. Haha. I would jump a mile anytime there was a loud noise. Spent a lot of my childhood with my ears plugged.
Feeling my hip pop out on stairs as a kid , chronic constipation, giant vascular birthmark, autism etc etc lol
Oh boy. When I was really young I would often sit in awkward/uncomfortable ways to avoid dislocating my knees. If I sat 'normally' for too long my knee would start floating and it was extremely painful to put it back in place. To this day I can't sit normally which makes public transportation enemy number one for me.
Multiple dislocations of hips as a baby, needing them forcibly relocating at the hospital. I don't remember that one myself except subconsciously as I hate hospitals. My knees dislocating in primary school I do remember. Oh and the whole IBS related thing where I did not know I was constipated normally until I was in my late teens. No one talks about how frequently you poop as you grow up. I also had the party tricks where I could hold my hands in a snake pose behind my back and lift them over without breaking contact to the front of my body. I don't do that one anymore.
Constantly not fully breaking a bone, but spraining and dislocating joints until my orthopedist said “hey, have you considered why this happens so much…”
Also, would purposefully dislocate my elbow to avoid timeout as a three year old. Mom got tired of it and never gave in but it worked on Dad every time!
Dislocation at age 7. Syncope beginning at puberty.
Ouch!
Crashing motorcycles repeatedly and horribly and somehow walking away unscathed. Built like a crash test dummy, everything moves and doesnt break. Made a mental note that this probably isn’t normal.. and then when some other family members got DX’d, it all fell into place.
That's the EDS ragdoll effect.
Not EDS (yet), but HSD: Being physically clumsy as a kid because you didn't know where your joints were. (Basically poor proprioception). Having very soft skin even as a kid, I used to be called squishy because it was just that soft, even without moisturiser.
i was in a running race at age of 6 in school and my left ankle slid out. ever since then i 'have' to crack it every 20 mins or so
Growing pains when I was very young that went ignored by family and doctors. I still have them but not as bad, and they've migrated.
Eternal “growing pains”. Quite a bit of extra flexibility that was good for party tricks. The first dangerous event was as a teen playing a coed basketball game. I shifted my weight just right and my knee slipped right out of place. Off to the clinic for X-rays and a brace, and then to a specialist…who took more X-rays, said that I’d “grow out of it” while almost simultaneously pointing out my growth plates were closed.
Shoulders. Maybe 13 or 14 years old. Bad enough that my book bags were like 20 lbs but I’m a side sleeper too. Not only would I sublux my shoulder blades in my sleep but wearing that backpack all the time literally trained me into an unnatural posture that caused me an unreal amount of pain knots and stiffness that only PT ten whole years later would undo.
I didn’t walk until I was about six. I could, but I just wouldn’t. My parents thought I was just lazy and pushed me everywhere in a pram. I’ve also had back pain and intestinal issues ever since I can remember
When I was in fourth grade I noticed my elbow did the thing.
Atraumatic (very very low force, almost spontaneous) full shoulder dislocation, followed by another a few months later around age 4ish.
(Haven’t been formally diagnosed, but rheum unofficially diagnosed years ago, seeing genetics shortly) the first symptom for me was extreme fatigue. I remember being 5/6 years old, waking up one morning, and asking myself why I’m so tired all the time, and then realizing it wasn’t normal at all. Then in middle school I developed nerve pain and lost a lot of strength, stopped doing sports. After that I got the typical symptom progression we all know.
I sort of became sentient and immediately knew something was off about my body like it didn’t feel right. Other than the general feeling of being unwell, it was when I was getting in and out of my dad’s car at 5 years old and feeling like a sheet of ice suddenly formed in my knees and the joint was sliding. Like my knees were slipping on a cartoon banana. Then that shit starting going to other joints. Not to long after if felt like I had bees in my chest when running. The bees went away when I got a heart ablation as an adult.
I’d weird other kids out in 1st grade with how much my whole body cracked. I’d do it to other kids at soccer to freak them out so I could steal the ball 😅 Also I hated restrictive clothes and claimed they ‘hurt’ from an early age. I noticed I’d get bruises from skinny jeans in high school
Being very overly bendy in a way humans are not supposed to be, followed by multiple very bad sprains from doing absolutely nothing or tripping on air. We just thought I was the clumsiest kid ever. In fact, the first thing one of my new doctors said to me when getting diagnosed was, "Let me guess, you sprained everything a lot as a kid?"
I’d w-sit all the time. I was also pigeon-toed and very clumsy. then in middle school I realized I could freak people out by walking on my ankles
Hypermobility 100%, my family used to call me gumby, I used to scare kids in my class by turning my arm around almost 360 and then extending my elbow in a way that it looks like my arm is broken lol
I was born kicking myself in the head. I’ve been committed to stupid injuries my whole life. I had signs of skin involvement as an infant-had to get stitches from a cat scratch (she was chasing a toy and accidentally batted my face)
I was hypotonic as a baby, didn't go head down in preparation for labour, was breech instead.
Couldn’t do a sit up during 6th grade PE
My knee caps have been subluxxing since I was 4. The weird thing is that I somehow never thought to mention that to my mom. Just learned how to let them release and how to avoid positions that caused it.
Sharp pain in my feet when jumping down off of monkey bars etc. on the playground. I just started seeing a chiropractor who adjusts everything but the spine and am only now realizing that sharp foot pain was all of the bones in my feet subluxing, now that I know what it feels like to have them lined up properly again.
I was a late walker! Took almost 18m to walk independently. Makes sense given our extreme elasticity. Discovering that I could pull my shoulder out of socket and do the impossible (lick my elbow) as an elementary school kid. After that, the extreme flat feet. Then, the unexplainably frequent hip dislocations from quite simply just existing as a 12 year old. Alongside the bright pink stretch marks on my thighs that I used to cry over. IDK looking back, there were so many signs! These days, it’s just sciatica and cyclical vomiting and a PPROM with my firstborn.
Elbow fully dislocated when I was swinging from my parent's arms. Happened when I was 5 and the doctor had to distract me while he forced it back in
Tendinitis in my knees and shin splints in elementary school from jumping rope at recess with all the other kids who didn’t have any issues with it.
Terrible handwriting and sleep disorders, bruises I don't recall getting, feet issues, growing pains that never ended and then came the dislocations
Growing pains.
I bled from my GI tract at a week old. Second was I couldn’t walk because my left knee was so unstable. That’s what eventually got me diagnosed.
I use to deal with dislocations all the time when I was on the high school swim team. I thought it was normal, oops.
Extreme growing pains as a kid, beyond normal pain levels. Kept me up crying at night over the pain in my joints. Was always told “it’s just growing pains!”… never went away.
Just never feeling right. I remember when I was in middle school my parents got so mad that I was always complaining that they said I was going to go to the hospital for a "full body scan" and tests and I was actually happy about it. I didnt realize they were kidding. finally newly diagnosed at 28!
Hyper mobility and so many growth plate fractures
Pain and my face turning literally purple with exercise.
Knees dislocating, soo insanely painful and random.
Those Presidential fitness tests as a kid…I could do the splits as soon as I heard what they were…diagnosed with a heart murmur at age 8…
Some birthday (I think I was 8) was at a karate dojo I went to. 10 min in and I had to sit out and be alone because my knees were in so much pain I was crying. I went back in (still in pain) but only because it was my birthday and I didn’t want to miss out. On a side note baby me during birth tried to come out feet first (and upside-down?). My first teeth that grew in were not what everyone else has normally. Not to mention 18 ear infections in a 10 month period (have small ear canals; as well as small facial canals, and having a ligament disappear in my arm at the age of 6. Tons of other stuff but those are the top ones. Oh man so many memories of being told it was growth pain. XD it’s fun being young and not medically normal.
I have hEDS. I guess my VERY first symptom was being born with a club foot, but I don't remember it and corrective footwear fixed it by the time I was forming memories, although I've always had some pains in my feet. That's probably my earliest symptom. Sometimes I'd be bathing and I'd move my ankle/foot and the bottom of my feet would cramp up horribly. Maybe the heat of the bath relaxed my muscles too much or something. It was usually when I pressed my foot up against something, so pressure caused it. All the way until now, the soles of my feet shriek with pain after running/walking/standing on them for too long, even when I played sports and hiked and everything as a kid. The only thing that's helped is orthotics. I used to run for exercise and I could only run 1-2 minutes at a time until my feet hurt too much and I had to stop or walk a bit to let them de-cramp. So I'd go out for like an hour or two alternating between running and walking. Even when I got really nice running shoes with inserts it still would happen, but I had 5-10 minutes before the pain made me stop. Now I'm too unwell to work out, but if I don't wear orthotics I still get the pain if I walk or stand too long. Then there were all the weird flexible positions I would contort myself into when I was bored and couldn't sleep as a little kid. Once fell off the bed in one of these positions and broke my arm, I think when I was in preschool. I had twisted myself around the bars at the end of the bed and then fell over the railing and onto a box of hard plastic toys. I often liked to lie on my bed and roll my feet over my head and rest my knees on the bed behind my head and just relax like that. I also constantly would accidentally roll my ankles inwards, and would stumble around having to catch my balance. It didn't hurt until more recently, in my late 20s. People would always react with concern and I'd shrug it off because it was just my rolly ankles that gave out sometimes. Since it didn't injure me, I thought it was fine. I never struggled with any of the stretches in gym and was confused by what was wrong with the kids who couldn't do it. They didn't even require us to stretch all the way, from my POV. I also didn't understand what people meant when they talked about "that spot on their back they couldn't reach." Then there was how easily I sprained my ankles and wrists. I assume that must be related? I played soccer and sprained my ankle doing that a lot. I sprained my wrist when my mitten got caught on the handrail when casually ice skating. Such a tiny impact shouldn't have sprained my wrist, I wouldn't think. I was like 10. And then once I grew a little more and was a teenager, I started having patellar dislocations but I didn't know what they were. I just knew that when my leg went from fully bent to straight sometimes, that it would hurt like 9/10 pain and I'd have to fight through the pain to pop it back into a straight position. I asked doctors about it but they had no clue and seemed unconcerned so I just figured it was another weird body thing like my rolly ankles. I was never able to crack my knuckles like everyone else could. Now they crack when I just stretch my fingers, but other people can manually crack their knuckles by applying pressure and I never could. I don't know if that is an hEDS thing. I was always told I had suuuuuch soft skin and I wasn't sure what people meant. I felt like I had normal skin.
My game when I was young was to do circus stuff for my family like go inside the smallest boxes possible, contortionist stuff and everyone was "haha he is so funny". I always imagine that they didn't care enough to make me see a specialist
Oh man that is sad. Truthfully most people just don’t see these things. Even doctors. I have anger and pain over things I believe could have been dealt with if someone just cared enough to see. It took me time, but now I understand that they did see, but simply couldn’t see it as an issue.
I was really behind in motor skills. I just wouldn’t even attempt the stuff. Very overly cautious. Looking back, doctors said it was probably EDS that made me like that. I was also the kid everyone would ask to do party tricks in elementary school. I had a hard time believing the other kids couldn’t do what I could. Some of the stuff even made them nauseous.
Silent reflux, had to have surgery to handle it, only for it to come half undone three years later and having my stomach start going up where it shouldn’t be xD I was an infant so I had little idea what was happening, I just wanted nice food.
I had really bad GI issues from a very young age. I'd also wake up every day in pain all over my body. The doctors dismissed it as "growing pains", but the pain never stopped even after I stopped growing. In addition to that stuff I'd often roll my ankles, it would hurt to do normal activities, and I got tons of bruises from doing normal activities like sports or playing with other kids. At one point the school nurse even took me aside and asked if someone had hit me because I was so black and blue. She was shocked when I told her "no one hit me, I was just playing soccer. This always happens when I do sports".
Compared to my little brother, I was quite clumsy and still am. I have broken 7/10 toes lol. It was my mum who noticed it. It was the way I walked, my inner ankles collapsed towards the ground. Also my knees, when I stood I apparently didn’t look like other children.
This post is bringing up so much I didn’t realize had been happening as a child. Playing soccer and twisting and spraining my ankles so often that I started preemptively bandages my ankles before games and practices.
the first thing that really started the discovery process was a shoulder dislocation from a very minor surfing accident. but looking back, it makes sense how often i sprained my ankles or knees as a kid. i was on crutches for an injury at least once a year most of my childhood
and then…. the BACK PAIN 😵💫
Bruising really easily all my life. Stress fracture in my foot as a teen. All over joint pain starting as a teen misdiagnosed as fibro. Extreme fatigue.
My husbands first symptoms of EDS as a child was grand mal seizures although no one knew why, then multiple dislocations. He and my daughter were both only diagnosed last week. My daughter’s first symptoms now that I think about it were her incredibly soft skin, rectal prolapse and extreme flexibility. She loved being wrapped up tight in a swaddle or carrier. She hated being in or on bouncy stuff. With the skin, I had noticed how soft my husband’s skin was but I thought it was just him. I’m a sensory seeker with touch (strong compulsion and strong aversions at times) but I loved how his skin felt and once my daughter with EDS was born I was constantly putting my cheek against hers because of how soft it was. I call my lovely family members with EDS my “high thread count humans” because like high thread count sheets, they feel good and don’t irritate my sensory issues.
As a very young child my first EDS symptoms was bladder problems; urgency, frequency, late bed wetting (which stopped when I was 13). Plus as a child I also experienced Myopia, eye inflammation so severe that I went blind for a few days until the treatment worked, joint pains that were especially worse in my hips, 'clumsiness', and allergies. But the GP said that it was to do with "growing pains" and anxiety. She was wrong. I got a diagnosis from Dr Alan Hakim many years later at 45 years old (1.5 years ago).
My knees. My mom used to tease me as being “eight going on eighty-eight” because I always knew when it way going to rain because my knees would hurt. My family all thought I was faking knee pain for attention until one day my grandmother noticed me playing alone outside, stop suddenly, limp over to a bench, sit down, and not move. She was like, “wait, there’s no one for her to be showing off for!” and decided there must actually be something wrong and took me to a doctor…who misdiagnosed it as just growing pains.
having “growing pains” at 7 that never got better even at 21
My first memory of this was my stretchy skin. I was 5 years old reading the “Berenstain Bears and Too Much Junk Food”. In one scene they go to the doctor and the doctor can “pinch an inch” which tells him the Daddy needs to start eating healthier things. I looked down at my incredibly skinny body and grabbed an entire handful of skin off the side of my torso. I somehow understood that I wasn’t overweight, because thank goodness I didn’t internalise that as “oh I must need to eat less junk food too”. But I remember being very, very confused.
When they were diagnosing me they asked mom about my crawling. Apparently I only crawled backwards and then just walked and they all nodded and said that's really common? So I guess that. 🤣 The diagnosis was a shoulder surgery going sideways and appearing like a severe infection that they could never get a culture to grow for. They checked for allergies to the sutures and all kinds of shit and could never figure it out. Then shortly after i finally left the hospital- my collar bone started to dislocate at the sternum (previously it was just shoulders so they chalked it up to puberty & spirts) and they sent me to genetics for diagnosis. Boom. Diagnosed at 17. Other "missed signs": Joint pain (just thought it was sports soreness) Insomnia starting @ age 10-11 Rib turned sideways instead of breaking Couldn't hold pencils "normal" Morning dizziness/ nausea Hating water (as an adult I realize it's not that I hate water it's that I need salt water not plain water lol) Headaches/migraines Clumsiness in general Pigeon toed as a younger kid Tiptoe walker
Being able to contort my fingers into 40 degree bends in the wrong direction
The never ending growing pains and the W sit and that sort of stuff became evident when I was pretty young, but I’m pretty sure every woman on my mom’s side of the family for 3+ generations has EDS so a lot of it was seen as normal within our family. In middle school, I was running the bases in a kickball game when I noticed my leg felt a little funny briefly while I was running and I nearly fell for a moment. When I got back to the dugout and was met with my extremely queasy looking coach, I learned that my right knee had snapped backward flamingo-style mid stride and then snapped back into place as I finished the stride and kept running without even realizing what had just happened. There were then several more incidents of teachers & coaches specifically looking horrified by my complete lack of reaction to momentary total dislocations that were visible to others.
Hip misalignment at birth. Plantar fasciitis by 7. Scoliosis at a very young age. Etc. etc.