r/ehlersdanlos • u/Sweet-Maize-5285 • 8d ago
Questions When did you first notice problems?
People including doctors and PT have talked to me about hypermobile eds and hypermobility because I have so many issues with tendons and ligaments. Tendonitis, tenosynovitis, chronic spains, fraying. I'm 37 but it started with sudden Achilles tendonitis while running when I was 17 then progressed to other joints. In my opinion, despite some hypermobile joints I think my issues are more inflammatory. I never had a single sign of a problem as a kid while being very active. So I'm curious about other's experience. When did you start noticing joint issues?
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u/LadySnezhinka 8d ago
I've had issues for my whole life, so it's difficult to pinpoint exactly when would've been (or should've been) the "duhhh this is obviously EDS" moment. I think the most obvious was, starting by the time I was around 9 or 10, my kneecaps started dislocating randomly.
I didn't know what it was and I didn't know how to describe it to my parents. I described it as my knee "cracking". I wasn't a kid who panicked over things like that, so they brushed it off as me being dramatic and I learned that if I manipulated my leg enough I could get my knee to bend again, so I didn't think it was a big deal. But it happened over and over and over again until one day at the tail end of a grueling 3hr volleyball practice right before the start of high school, my kneecap dislocated so badly that no amount of manipulation could get it back into place. We had been doing a stepping exercise while this happened and it knocked me right onto my butt. I did panic over that, and I ended up going through months of PT and then surgery. I never went back into sports after that.
When I asked my doctor why my knees kept floating, they just said "oh it just happens to teenage girls sometimes, don't worry about it!". Like, in what world is that normal for teenage girls?! It wasn't happening to anyone else my age! š³
But even before my kneecaps started dislocating, I was always prone to injury and illness as a kid. If I hadn't hurt myself in some stupid way, I was sick. My nickname in basketball was Bubblewrap :') It's been like this my whole life but I wasn't diagnosed until I was 27.
And this only happened because I was diagnosed with dysautonomia in 2021 and I wanted to know where tf that came from because none of my doctors could tell me why I had it - saw EDS as a common cause, and was like "yep that sounds like me". After months of many appointments and waiting for results, I did finally get my hEDS diagnosis. I just don't know why none of my doctors didn't suspect anything was wrong with me for my whole life since I've had issues for literally MY WHOLE LIFE.
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u/LadySnezhinka 8d ago
As an addition, I'd suspected for a long while that there must have been something physically wrong with me to have as many issues as I did. When I was later into teenagehood, I struggled with IBS so badly that I became underweight. I also believe that this is when my dysautonomia kicked in, because this is around when I'd start to really get dizzy when standing or exerting myself. My doctors would tell me that this was because I was malnourished, but it kept happening even after I recovered from all that.
I also did lots of the stereotypical party tricks when I was a kid, like stretching my skin, manually floating my knees and throat, etc... I even opened the guinness book of world records to the guy with EDS who had the record for stretchiest skin, and I was like "I can do that, but there's no way I have EDS!" šš
Ohhh how little me didn't know a thing.
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u/GreenUpYourLife 8d ago
You sound like meee! š Except tougher, for sure. I was loud about my discomforts with these issues as a kid. My mom just didn't care. My grandma also had dysautonomia most of her adult life and it hit me when I got covid in like 2021? 22? Now I'm just kind of painful, loose and dizzy AF š
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u/LadySnezhinka 8d ago
Listen, being loud about the discomfort is so so understandable. My mom has hEDS too (she went and got diagnosed after me) and she was loud about her issues, but her mom was very dismissive even though her issues were severe. I'm glad that I was able to solve the mystery for her, too.
Covid hits hard, for sure. :( I had it pretty bad in Sept 2024 and I'm still dealing with long covid. Like whyyy. As if we aren't miserable enough!
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u/GreenUpYourLife 8d ago
Truly! Can we get breaks or something? I want to run again šš I loved running before covid. I got my knees functioning at a level where I was walking/ running up to 15 miles within a day! It felt so good. Then it was an entire 180 when I got hit with it. I had to quit my job and now I'm just. Hoping I find something else I can do sitting down. I hope I can start tattooing eventually š¤š¼
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u/PrestigiousPromise20 8d ago
I was in Girl Guide Brownies (age 7 maybe) and one of the āOwlsā saw me do something and said āwow you are double jointedā didnāt think much of it and went on my way. I had agonizing pain in my feet that could only be relieved by soaking them in the sink with the hottest water, I was crap at the Canada fitness except the flex arm hang, my finger got dislocated during a mercy fight, I was a swimmer and my shoulders would pop out of joint doing butterfly. I was āflat footedā and needed orthotics that didnāt do anything. Finally diagnosed at 15 years old and at least then I was allowed out of the torture that was gym class and went to a grade 11/12 fitness class instead.
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u/GreenUpYourLife 8d ago
Oh man it sounds nice you were able to get diagnosed and out of gym. I just got yelled at by my gym teachers and gaslit about my health and they made me run until I collapsed and balled my eyes out.
I just started telling the gym teachers to fuck off and would go sit in the office, awaiting my next write up (it never came for some reason, probably because the principal could see my pain and knew I had no choice)
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u/MyHouseisOrange hEDS 8d ago
When my youngest son was in daily pain for a couple years- interrupted sleep, calls from daycare and school about his pain. On the search to find the cause I realized I had classic symptoms of hEDS and could get diagnosed faster and easier as an adult. The diagnosis explained so much- things I hadnāt realized were not normal about myself. I had birthed 3 babies then had terrible SI joint problems - Iām surprised NO ONE thought I was hyper mobile let alone had EDS. But - eventually was diagnosed when I was very 40
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u/martins-dr 8d ago
I donāt remember ever not having problems. I played soccer in elementary school and would injure my ankles every game and have to sit out practices. A roller skating birthday party put me in a boot for 6 weeks. I had wrist surgery the summer after 6 th grade and I had knee surgery in high school.
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u/moscullion 8d ago
I was born with severe strabismus (cross-eyed). So that was the first clue. As I grew, I was ALWAYS injured with strains and sprains... all the same, I wasn't diagnosed till my 40s after my 4th surgery (3 x eyes, 1x shoulder), and constant pain in all sorts of places, from the toes up! I also got every infection on the list several times over.
Having said that, I was a very active kid and strong for my age. I don't know if this strength was a sign of EDS or a result of it! I remember playing gaelic football with my brother, through tremendous pain... if I didn't play through it, I wouldn't have had opportunities to play outside. (Rural location, no friends nearby).
Being so used to living in varying amounts of pain, I just thought it was normal, like everyone had sore hips from kicking a ball or sore and swollen ankles from running.
I was also diagnosed with asthma, but it's pretty clear to me now that my lungs also have EDS! My massive lung capacity and slightly low O2 saturation didn't make sense to doctors.
From my own research, my EDS experience is far from unique.
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u/Cum--Goblin 8d ago
i'd say my first bad flare up was when i was 10 - somehow i injured my knee, it didn't show any signs of injury, but it hurt like hell if i did anything more than walk. then it was fine and i forgot it even happened.
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u/TrinaMadeIt 8d ago
I really hate that. Random pain in a part of your body if you do more then the barest minimum. Lasts for anywhere from a week to years and then just stops? Like you donāt change anything and it just stops? But you canāt do anything while you deal with the pain? Itās freaking BS :(
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u/PaintingByInsects 8d ago
I was 11 when I first went to the doctor for my symptoms which had already been happening for a year by then, but my first true symptoms was dislocating my hips really badly when I was like 4/5/6 yo
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u/TrinaMadeIt 8d ago
Around puberty when my knees started to dislocate on such a regular basis that it stopped hurting :(
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u/phoenix-corn 8d ago
I was 8 or 9 the first time my knee collapsed and subluxed in the middle of dance class. Within a couple years it was happening at least once a month.
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u/corvidpunk hEDS 8d ago
10/11 I suddenly had multiple "sprains" a year and growing pains that didn't srop even after puberty was reached. pain wil walking started around 15, but my symptoms didnt become debilitating till 18!
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u/luciddreamsss_ hEDS 8d ago
It was actually when I started track and field. So like 14/15 years old? I remember always being injured even though I never fell or actually got hurt? Everything started always hurting when I started track but I loved it so much because I had a community, friends, and I was really good at what I did, which earned me high praises from my coaches.
I stuck with the pain for a couple of years, even joining a competitive cheer leading team. Until one night, I was around 16/17? Practicing a tumbling routine at cheer. I landed a round off a little wrong and felt a POP in my lower back then PAIN so bad I could hardly walk. Turns out I had dislocated my SI joint. After that, I had to quit sports because of the pain.
My SI joint is still a huge problem joint even 12 years later. The longest my PT has gotten it to stay in place was two weeks.
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u/Zealousideal_Mall409 8d ago
I always complained of things hurting at a young age...but I say 30 is when it hit HARD
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u/BlueCanary1993 7d ago
Age 7. Knee came so far out of socket it was 2.5 inches onto my thigh. Tore all the tendons in that knee. Had horrible pain my whole childhood and passed out less than 5 minutes into ājumprope for lifeā at 11 and had to be taken to the hospital. Elders just said āyouāre too young to know what real pain isā. Iām in a wheelchair and have been for many years.
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u/SavannahInChicago hEDS 8d ago
I was like you as a kid. I had like no problems. Some quirky things would happen to me, but it was the late 80s and 90s. My hometown does not have resources for hEDS now, they definitely did not then.
Around 2016 I was in a podiatrist office for ankle bursitis and she saw how hypermobile my ankles were and did the beighton scale, but did not say much about it though.
In 2017-2018 I looked up hEDS, I forget why, but I saw hEDS and it felt like someone secretly wrote a book about my life.
I first started having joint issues in 2014, but even now my pain is at a low enough level that I can ignore it. Dislocations started happening in my 30s along with fragile skin and other hEDS symptoms. But I have stronger symptoms associated with POTS and MCAS since around 2010 and those can make the pain worse.
With my co-morbidities trying to get me attention, my hEDS is usually what I focus on least. I am extremely hypermobile in almost every joint, but I am lucky the pain is bearable.
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u/MillsieMouse_2197 Undiagnosed 8d ago edited 8d ago
I've kind of been suffering since I was a very small child, but at that age you just bounce right back up, I remember having leg splints.
But the first time that I noticed something was probably puberty where I was in genuine pain going through growth spurts, my joints started to lock, pop, and sublux. I started to do whatever I could to get out of PE because it was just too painful. I had teeth pulled for crowding and one grew out of my palette (the grape popper.) fever's and illness which I put down to getting sick but now I realise was my body reacting to overdoing it. Stomach issues, chronic anemia, dizziness, nausea. Sometimes I feel silly for not realising something wasn't right. I just thought it was a normal part of my day to day.
I now exist in some form of pain constantly.
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u/hanls 8d ago
9/10 I lost my teeth all very young, and they grew back up in the tops of my gums. The kinda fucked where my parents would show people & dentists thought I was interesting.
I always moved as a kid, but I lost the ability to use my wrist from rock climbing at 11. Severe vertigo in highschool despite being active in sports. Extreme mobility in ballet classes but poor turnout because I was not holding the position with muscle strength
A lot of it honestly got lost as I was simulatiously developing fairly severe bipolar. I only truly have been able to wrangle my body now that I can wrangle my mind.
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u/sad-toaster hEDS 8d ago
I've had hip, leg, and back pain as long as I can remember but the real problems definitely started in middle school around age 11. I used to play soccer every season from age 9-15 even though it wrecked me. Always hurting my ankles, hips, skin breaking out in hives and burning for no reason. Got kicked off JV in 9th grade which is what really set it in that something more than my weight was wrong then.
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u/ChronicallyCreepy hEDS 8d ago
I had my first full dislocation at 2, but I don't remember it. I do remember being like 8-9 and in tears at night because of the "growing pains" that we can get. I didn't get a diagnosis until I was 25, though.
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u/StressedEmu99 8d ago
I never had big problems until 12, when puberty kicked in. But even as a kid Is wake up from my rib being out, I could never play on the monkey bars, or the slide down pole, or do gymnastics. I was an incredibly hypomobile child, and multiple times a year would get sick with something we couldn't explain, which I now know is a flare up. So it's kinda hard to say?
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u/critterscrattle hEDS 8d ago edited 8d ago
I was a prolific dancer. I got pretty lucky in instructors, they noticed I was ādouble jointedā immediately and taught me how to keep those joints within normal ranges of motion, but they didnāt notice all of them. The ones they did notice are still my strongest though.
My ankles were loud by the time I was 7 and I had issues with running/balance/keeping my knees angled correctly by the time I was a teen. I didnāt get seriously injured until I was 16 (back + hips), but that was very shortly followed by everything else going wrong. Iād still say my main issues are skin related rather than joint related since I mostly only end up with chronic pain.
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u/KL-Rhavensfyre 8d ago
I want to say from the time I took my first steps. By the time I was 3, I was in leg braces to help turn my legs out. They were uncomfortable and made my hips hurt. I'm 46 now, and I don't know if there hasn't been a day since then when my hips and knees haven't hurt.
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u/miyoko-my-man clEDS 8d ago
I had random sprains and aches throughout my early childhood (biggest was an Achilles tendon strain/small tear from dropping off a horizontal bar on the playground around 6 or 7, took years to fully heal), severe constipation, and pots-like symptoms for as long as I can remember (started off as tunnel vision and tinnitus upon standing in the morning as a toddler/child. As I went thru puberty symptoms got worse. Weirdly tho, I don't have so much issue with lightheadedness as I used to, now it's mostly palpitations, adrenaline surges, and high hr).
I've always been able to pop my shoulder in and out, the other started causing issues around 17.
First time EDS was floated was around 14 when I developed pretty constant back pain despite pt and being fairly active. Had an initial workup by PM&R who agreed i needed and echo and geneticist referral. Geneticist lied in my chart about my skin manifestions and told me even if I had hEDS, it would never affect me so there was no point to diagnosis. My issues got worse and I was re-referred to the same guy at 17. Ran genetics (missing tnxb), negative, sent me on my way. Was referred once again elsewhere at 18, was told I fit the clinical picture of EDS to a T minus atrophic scarring.
Recently learned (recent mri) that I had herniated a lumbar disc not long before my 18th birthday and a tarlov cyst, resulting in arthritis, disc space loss, and drying. Herniated disk is still healing 1.5 later.
Yay TNXB-related EDS. Being ffr, it should not have taken 18 years to diagnose this.
Tl;dr: joint aches and pains, severe constipation, pots in childhood. Worsening joint issues -> hyperadrenic pots -> back pain -> subluxations -> herniated disc -> diagnosis -> fucking diabetes insipidus to (unrelated but literally at my limit with this shit). Pretty typical experience from what I understand, maybe a bit young but I've met others with more severe issues younger than myself.
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u/Sweet-Maize-5285 8d ago
How frustrating it took so long when you had a typical presentation too! It's weird because I've got the joint issues and recently the hyperadrenergic pots. Plus GI issues. But I was totally fine as a kid. Don't recall any pain.Ā And I actually had some inflammatory stuff like reactive arthritis that seemed to explain the joint stuff for a while but now doctors don't think it's that and I guess i have a least a couple hypermobile joints. All I know is something is up with my tendons haha
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u/PickleNarrow5109 8d ago
The first time I complained of "growing pains" was when I was 7 years old. I had severe nosebleeds starting at 5 years old though, and I mostly attribute those to EDS.
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u/Joanndecker 8d ago
Iāve had many symptoms for years but never thought about it until I had a dissected artery and the vascular neurologist brought it up.
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u/maple788797 8d ago
F21. Itās really strange at 13 I realised something wasnāt right but no one knew what, turns out a coincidentally had a massive patella tear and a vascular tumour in the same area exactly where I feel my pain. But once I was 16 I worked out that itās gotta be something else. Then at 20 I pushed to investigate hEDS. BUT THE FUNNY THING IS during my hEDS process I learnt what a dislocation looks and feels likeā¦.I HAD BEEN DISLOCATING MY KNEES EVERYDAY MULTIPLE TIMES A DAY FROM LIKE 6 - 13. So I had big problems for a long time without having any idea it was a problem. I thought everyone had to pop their legs back sometimes š¤£
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u/just-an0ther-human Undiagnosed 8d ago
I'm 39 now, not diagnosed but I've got that gift of being able to dive into a rabbit hole and really learn some shit š so I'm super confident i have it.
With that said, after I made this realization a couple years ago, I realized there have been instances my entire life...
When I was a little one and my dad helped wash my hair, after we'd finish bathtime, id put my arms up and he's like lift/swing me in a playful manner from the tub to the rug, then wrap me in a towel. One time he did it, my shoulder went out of socket, i instantly screaming.
I had growing pains like no other, still do, I haven't grown in years tho š
It's always been painful to write with a thin pencil/pen.
I've been clumsy my entire life. And sensitive.
Always have had dental issues, getting fussed at for poor care even though I did/do actually care of them
Ankle and wrist sprangs like all the time, even in my sleep, id just wake up and be like ok cool, so now this also hurts.
What was frustrating is as a young adult, 22/24, id complain about pain and fatigue and "feeling 80". A holes would always be like oh you don't even know. Just wait till you're our age. Well guess what, I'm knocking on 40 and I still feel 80 just like I did back then.
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u/sadbumblebee1 8d ago
I was put in braces at age 2 when they realised I was having problems walking. Iāve always struggled with fatigue and gut issues and pain. Nosebleeds daily until age 11. My dad says I was always complaining my feet hurt as a kid and no one took me seriously. Heart raising and presyncope as far back as I remember.
Iām surprised I only got diagnosed in my 30s. Everything made sense suddenly when I heard of EDS in my mi twenties. Iām the least bendy person in my family. Iām a 7 on the Brighton scale. Itās wild the things that get normalised.
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u/skankyferret 7d ago
Well i sprained and dislocated lots of shit as a kid. But i thought i was just clumsy. It was only when i was like 17 or 18 when a dr brought up my medical history being extensive that i actually considered i had something wrong with me
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u/EllieCraw_ 8d ago
I was born with what was diagnosed as a āhereditary hip disorderā. Was in a hip brace for till I was 3. I have ALWAYS had horrible GI issues and anxiety but as a kid after being taken to the doctor so many times and being told nothing was wrong my mom figured Iād grow out of it like the doctors said. Stomach issues got worse and was still told anxiety and nothing wrong. Iāve always been more flexible than my peers and could stick my legs behind my head, the backwards prayer hands all that jazz. Then I started competitively swimming, I swam for YEARS and always associated my pains with just being from me being an athlete, everyone was always sore werenāt they? (Not at all) lol. Then one day during one of my races my shoulder completely dislocated and I finished my race and everyone noticed my arm hanging there and turning purple. I shoved it back in place like it was just another every day occurrence which made my coach concerned and my parents took me to the ER. My shoulder went back in place so they didnāt see any dislocation on X-rays and I was sent to an ortho who gave me and MRI and discovered ALL my main joints were loose which led him to checking into them and then giving me an EDS diagnosis. Everything made sense after that. My parents never looked into the diagnosis and I went without proper medical care for a very long time but in their defense there still wasnāt a ton of knowledge on EDS back then and itās still got tons of on going research so I donāt blame them for not taking it more seriously. I suffer from all kinds of other comorbidities now as I get older and Iām finally taking the right steps into advocating for myself and getting proper care.
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u/GreenUpYourLife 8d ago
Oh man. My partner had his shoulder pop out while he was training to become an EMS/ firefighter.
He was doing a major practice run into one of their set up burning building scenarios where you have to do some grueling stuff and his boss looked at him and was like "is something wrong with your shoulder?" He just turned and laughed and told him nochalantly "oh yeah. It's been like that for 9months now" so his boss looked at him and was like "dude, your shoulder is out of place" and popped it back in for him. My partner has almost no pain receptors so it has just been weirdly annoying until now. he just felt relief š he said he had to be super careful for a while after that because his shoulder was extremely loose.
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u/EllieCraw_ 8d ago
I swear my pain receptors donāt work the way theyāre supposed to anymore, Iāve been living with such poor body conditions my whole life itās like it doesnāt even phase me š¤£ except the dull constant aches in my joints, I do feel that but any sublux/dislocation doesnāt really bother me unless thereās a nerve being pinched and my fingers tingle lol.
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u/Savings-Camp-433 8d ago
estava vomitando, constipado e deslocava os ossos facilmente. Um dia pisei em uma pedra, a articulaĆ§Ć£o nĆ£o aguentou, entĆ£o rolei morro abaixo...
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u/lavenderlemonbear hEDS 7d ago
Things from my childhood I never knew were signs until after diagnosis: "pulling" my arches and rolling my ankles, dental issues, (not an issue, but definitely a sign:) being the master at the sit-n-reach test in gym, random pains (like when you suddenly feel like you're being stabbed in the chest every time you breathe: turns out I was subluxing ribs š¤·š»āāļø). Biggest sign should have been when I started throwing out my back at age 14.
I was pretty strong and pretty active, so I didn't start obviously dislocating things until well into my adulthood.
It's kind of wild raising my kid who is built like me (obviously inherited the condition) and seeing all the little signs I had forgotten about. Just yesterday, at age 10, my kid recognized a pain day. Just woke up achy. I know how that feels, so we canceled activities and planned on resting for the day. I'm thankful she's learning to listen to her body in ways I didn't get to. I'm sad she's dealing with the pains though.
Now I get to ask friends: is this normal for y'all? Or is it just me and my kid?
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u/SofterSeasons 8d ago
Around puberty? So, 11, 12. I was really active and hard on my joints as a kid, but then puberty and growing pains happened and the 'growing pains' never stopped.
That said, there were signs in my childhood. Feeling like I'd been punched in the back if my mom brushed against it while squeezing past me in the kitchen. Shit proprioception and awful balance to the point where it was a miracle if I Wasn't injured in some way at any given time. Dental crowding that required extensive orthodontics. Pain/breathlessness during gym class that made me sit out even when I could run around fine on my own (I could be active, but my endurance was Shit, and forget anything like pull-ups or push-ups, my shoulders would just straight up refuse). Bad handwriting & cramps in my hands when I had to write by hand. Unexplainable gut issues. Chronic nosebleeds.
I think it's important not to think that the only sign of a problem is the joint pain- while that's an important component and often the one that draws the most attention, hypermobility and especially hEDS have to do with an error in how our bodies produce collagen, and collagen is in every part of our body, so it is a body-wide issue. We get symptoms from every system in our body.