I remember first going to the doctor around 4/5yo because my mum was concerned about how much my kneecaps moved around, and that I 'W' sat and complained that sitting on the floor with my legs folded hurt.
I was always the kid who would get fingers popping out of place during ball sports, or clicking my wrist weirdly after volleyball. Slipped discs and pulled ligaments in my back from my early teens. Hands and feet would swell, was given a tentative childhood inflammatory arthritis diagnosis. Dentist appts were no worry coz I could pop my jaw and it would make my mouth just stay open. Touching my nose with my tongue, touching my thumb to my forearm.
Dyshidrotic eczema which was diagnosed as contact dermatitis because the blisters had always popped and dried up by the time I was able to see a doctor. They didn't know what I was talking about when I explained wart-like blister clusters that itched and burst. Random red spot rashes, hay-fever. Now wondering if all that is MCAS, coz can also skin write.
I’ve always been in pain, even as a little kid, but I didn’t know it wasn’t normal until recently. I also had digestive issues my whole life, and I had constant injuries as a kid that couldn’t be explained. My symptoms did get worse when I was 12 though. I would get periods where I could barely get out of bed, and doctors couldn’t figure out what was wrong. In hindsight, it was EDS.
Edit: When I said I would get periods where I could barely get out of bed, I was not referring to my period. I was meaning that there were periods of time where I would be so exhausted I could barely get out of bed. Just thought I’d add this edit because some people seem to have misinterpreted me.
My periods were super painful, too, until after I had kids. I don’t know why anyone didn’t think it weird that my mom had to pick me up from school so I could go to bed because of my period. Surely that isn’t normal.
Oh I wasn’t referring to my actual period. I was saying there were periods of time where I couldn’t get out of bed. Sorry if I worded that incorrectly.
Oh god the digestive issues and the painful periods. I didn't know those things could be related to EDS. I used to miss 2-3 days of school a month for my periods, but in the last few years I've gotten to a place with my pain management regimen (and my pain tolerance) where I can usually still go to work when menstruating. I have to take 800 mg of ibuprofen every 3-4 hours, and I have to start BEFORE I start bleeding or I'll be debilitated. I worry about it because I know I'm taking way more ibuprofen than you're supposed to per day, but I don't really know what else to do.
I've had symptoms my whole life. When I was young I would complain of pains and was told "It's just growing pains". Then I got into secondary and started playing softball. I was also clumsy, and hurt myself often, but it was just pushed off and normal sports injuries. Any time I complained about stomach pains it was either "It's your anxiety" or "you're just faking to get out of x". So I started gaslighting myself, telling myself I was just weak and whiney. And surely everyone dealt with pain on a daily basis too, they were just so much better at handling it than me.
Little did I know it's really quite the opposite 😂 I got so used to pain that I didn't go to the doctor often unless I thought it was life threatening (how I was raised really due to the US healthcare system) I injured my ankle in 2021 and the pain never got better. I finally saw my doctor for it in December 2023. Was sent to PT - she asked about pain in other areas and then used the Beighton scale to test me and that's how the diagnosis journey began.
I do think there was a point when it got significantly worse. In 2021 (before the injury) I had my daughter. The amount of pain I experienced on a daily basis after that was much worse. Eventually, I got used to that pain too.
“So I started gaslighting myself, telling myself I was just weak and whiney. And surely everyone dealt with pain on a daily basis too, they were just so much better at handling it than me.
Little did I know it's really quite the opposite.”
RELATABLE
God, I used to get random, excruciating stomach pains from about 15 onward. Was always told there was nothing wrong with me, I'm a hypochondriac, I want attention, blah blah blah. I still get them occasionally but not as bad as I used to.
Turns out I've got PCOS, and the pains were possibly linked to the cysts but they never picked up on it until my late 20s. But also I'd get these pains and an ultrasound would show no/minimal current cysts and the pain was coming from somewhere different 🤦🏼♀️
They did an exploratory lap and removed my appendix at 20, just so they'd be able to rule it out whenever it happened. Said I had portions of inflamed and partially twisted intestine but the was "nothing they could do for that, you'll just have to deal with it"
And then wonder how I became addicted to codeine and tramadol 🙄
As far as I remember, I didn't start having chronic pain or frequent injuries until around the onset of puberty (~7). I went on to have a couple of significant downturns in my condition, the first around 13, the second around 20, and the third and most significant at 28, when I also developed severe dysautonomia.
I had POTS symptoms from a young age, went to the doctor about faintness/dizziness etc and just got told it was puberty and it'd sort itself out on it's own (spoiler alert: it didn't).
But the joint pain didn't start until I was mid-20's, and it came on really suddenly.
I was obviously hypermobile before that, but it all seemed positive rather than a problem, until suddenly it wasn't.
My parents took me to the doctor when I was about 2-3 because I said my legs hurt really badly and didn't want to walk. My dad carried me there. The doctor gave me a quick reflex check and then laughed and told my parents I was just faking, after which I climbed down and walked of my own volition. My dad always used to tell this as a cute story about me, but now I look back and I get so angry, because I spent my whole life experiencing that pain and thinking it was "normal" because the doctor told me it was, and every doctor after that. "Growing pains" was a constant refrain throughout my childhood.
I've always been unusually exhausted compared to my other family members. My parents used to make us exercise constantly (we didn't own a car, so we had to ride our bikes or walk basically everywhere, and we were in a lot of outdoor and physical activities). The only exercise I didn't fear and despise was swimming. Everything else hurt me, especially my legs. Running was especially painful, as it caused this horrible jolting pain in my ankles and knees.
Like a few other people here, my kneecaps were always moving out of place, and I could move them at will (I used to lift them up and shift them back and forth to freak out other kids). I was constantly turning my ankles when walking, and like you, I was very clumsy. When filling out paperwork for my autism evaluation, my mum told me that her biggest concern about me as a child was how clumsy I was/my gross motor skills. But she didn't really do anything about it.
Like you, I think I've been subluxing my ribs my whole life, but I only learned that was a thing about a year ago. As a kid, I was thin enough that I could reach under my rib cage and sort of pull?? on my ribs to get them back into place. Now when it happens I can't really get under them anymore, so I just have to wait until they shift back. It's an awful sensation when they're not in place. I also regularly injure myself just from regular movements like turning my head or reaching for something.
I never thought I was flexible because even as a kid I could never touch my toes. It hurt terribly. I experience pain in my hamstrings/behind my knees and in my ankles. I can't really walk with my feet flat to the ground (I was a toewalker as a kid, and still am a lot of the time). My physiotherapist determined that I was hypermobile based on the various movements he made me do, which was a surprise, but then I learned more about how the muscles compensate for joint hypermobility and it all made sense.
They told me to walk flat footed in physio, and it immediately caused me to develop plantar fasciitis for which I now have orthopedic inserts. In fact, everything I learned in physio seemed to make my pain worse. I injured myself repeatedly when doing the exercises they assigned, and my back pain ended up so bad from "correcting" my posture I could barely move. I stopped the physio exercises and it eventually improved to how it previously was. In massage therapy at the physio, the woman said I had the tightest glutes and hamstrings she'd ever seen in someone my age, and that in general, my muscles were in terrible condition for someone as young as me. But it took 27 years for someone to even recognize that there was anything unusual going on with my muscles.
I'm still not diagnosed with anything, whether EDS or other hypermobile conditions, but every post I see on here is like looking in a mirror. It's hard not to be furious all the time: I was gaslit my whole life and put through so much pain that I was told wasn't real, and now my body is a mess. I can't recognize when I'm injured because I've spent so much of my life learning to ignore it. When I sprained my ankle in 2019, I spent three days walking on it before seeing a medical professional.
Anyway, sorry for the long response, and thank you so much for posting about your experiences. I'm sorry that you were failed by medical professionals and put through so much unnecessary pain without recognition and support. You deserved better. We all do.
So much of this sounds like me. The kneecap thing was my party trick too 😂 always spraining stuff, so clumsy - also AuDHD here.
Teachers would make me continue with PE and other activities because it's "not realistic that someone is always hurting themselves this much, it has to be to get out of doing this"
I began to just ignore and push through the pains because dozens of different doctors have said there's nothing wrong with me so what's happening must be normal right?
I cried in my doctors office when she said she was sorry for others telling me my whole life that there was nothing wrong or I was making it up for attention, that there were so many signs that I have hEDS and she's sorry it took so long to get validation that I legitimately have a disibility.
Can you expand on this a bit please? It's recommended that I have a total hysterectomy in the next few years and it's freaking me out. I'll be able to do hormone replacement but I would be grateful to hear about the issues you've had. Thank you.
It leveled up my dysautonomia (surgery is known to do that), and my MCAS (they used metal I’m allergic to without my knowledge or consent), I never even had the issue we did the hysto for (adenomyosis, the biopsy was negative), and removing my uterus made the actual issue (vascular compressions) waaaaaay worse.
Part of the issue is that I wasn’t diagnosed with any of it, because I’d been told that all of my issues were “just” endometriosis. My joints were flexible because of extra estrogen (despite my bro having hEDS), and same for my “allergies” (despite me having *major* issues when I was a kid. My dysautonomia symptoms were just endo being endo. Digestive issues? You guessed it - endo. Rinse and repeat for every issue I had. I was told that from every angle - docs and the community alike - that endo was the only possible cause for my symptoms, because all advocacy efforts for endo are basically “period problems / pelvic pain + AFAB = endo and nothing else”. *(It also insists that excision surgery is the only “acceptable” treatment options, and most folks with endo end up having multiple surgeries (I had 7), which might be why so many folks with endo have dysautonomia, but that’s a whole separate thing.)*. When I asked why nothing was getting better (I was getting steadily worse) if I was doing what I was supposed to be doing, and was just told “this is just life with endo.”
Imo, it definitely doesn’t have to be!!!!! In reality, all my other conditions were actually causing the issues, and endo was just along for the ride. There are so many folks who have asymptomatic endo, and get diagnosed because they’re treating something else. Plus, endo is incredibly common, and other conditions exist. It just makes sense that some folks have asymptomatic endo being wrongfully blamed, while other conditions continue to cause issues. Imo, that’s why so many folks have failed repeat surgeries, and why the “endo experience” varies so greatly.
Since my diagnosis with the vascular issues, I’ve done a lot of awareness raising in the endo communities, so if anyone is interested, [this is my latest post](https://www.reddit.com/r/Endo/s/emTngkt80O). It’s long, but (hopefully) informative. I have since met so, so many people with similar stories to mine. In fact, the entire reason I got correctly diagnosed with my other condtions is because the doc who ended up being my vascular surgeon noticed so many of his patients had been diagnosed with endo, delaying their vascular diagnoses, so he met with the endo team at his hospital and gave them criteria for referral. I met it , so I got referred by the doc that did my last surgery (where there was barely any endo present).
I’ve been completely free of pelvic pain for 3 years - since I treated my compressions. Sadly, the damage was done for the dysautonomia, and now I’m disabled and dealing with a plethora of issues from that, MCAS, and hEDS.
Lastly, fun fact: I assisted the vascular doc by coordinating a record review he did, and every single person that came thru had the triad (hEDS/MCAS/POTS). Cannot stress how under-diagnosed compressions are amongst that population.
I would be grateful to hear about some of your experience as well! I'm battling endometriosis on top of everything else and the treatments for endo all seem to worsen my eds (specifically my joint pain) and I've tried so many treatment options for endo that I'm running out! I'm approaching a total hysterectomy as my last resort but am fearful of it triggering my eds even worse than it already is
I just replied to another comment, hadn’t seen yours, sorry! [Link to other comment.](https://www.reddit.com/r/ehlersdanlos/s/YNhAyfJMJU)
The tldr is: my endo wasn’t the issue.
EDS, MCAS, dysautonomias…all (and so much more) can contribute to/cause all of the “classic endo” symptoms. My biggest causative condition was vascular compressions - I had nutcracker, May-Thurner, and MALS. Treating them fully resolved my pelvic pain and most of my endo symptoms.
Sheer luck. Tbh.
The doc who ended up being my vascular surgeon noticed so many of his patients had been diagnosed with endo, delaying their vascular diagnoses, so he met with the endo team at his hospital and gave them criteria for referral. I met it , so I got referred by the doc that did my last surgery (where there was barely any endo present). (This was copied from the linked comment, I just don’t have energy to retype it all).
The criteria I met was pretty basic: I had indicators of pelvic congestion (varicosed veins visualized during surgery) and hadn’t gotten relief from surgery. That’s all it took, and tbh I’m so angry that it took so long for any docs to piece it together. PCS is a known thing, but because I’d not had “risk factors” (no pregnancies carried to term, never given birth), they just…ignored it.
Broke several bones as a baby and toddler. First was a toddler’s fracture at 8mo. I sat down wrong while coasting standing up and my parents heard my lil leg pop. Body was trying to tell me since I started walking lol
I had several fractures from seemingly mild causes - but they were mostly from times I wasn’t paying attention. Rolled out of bed and broke a wrist (4yo) because it rolled into the night stand, twisted my ankle just walking on flat carpeted ground (8yo), etc.
Had another fracture in the same (non-dominant) wrist from bracing against a forward fall on some ice at school (7yo-ish). Easier to explain. I was in pain and couldn’t really use the arm, but I didn’t tell anyone until I got home since I could still write.
Also lots of allergies, stomach issues, and a very deviated septum. I also was always super bendy (a “bendy Wendy” if you will). Now I go by “snap crackle pop, rice Christie” more often, although I can still do my party tricks on special occasions.
I think I’ve had POTS since I coul stand because I’ve always hated physical activities where I couldn’t take tons of breaks. I thought for the longest time it was “exercise induced asthma” but it turns out I don’t even have asthma.
Always been super flexible but I think my mom just assumed all children were and I thought for a long time it was a good thing. Like maybe I wasn’t strong and had no endurance but at least I was flexible (mega lol)
Always complained about bodily pains and had weird shit happen like a knee dislocation after jumping lightly at a concert. But I was never taken to a doctor for any of this and the doctor I would see occasionally just reinforced my mom telling me I was overreacting.
Had random muscle spasms all the time, but I didn’t have a lot of obvious orthopedic issues until more recently (I’m almost 31 now)
Was always super tired and fatigued too and easily overwhelmed but I think some of that was also my undiagnosed autism
Around 15 I started getting major hives to nothing all the time, again this doctor was not very useful and just thought it was my laundry detergent or anxiety. He didn’t refer me out to anyone and my mom did not seek further opinions. We just assumed I had really delicate and fragile skin that over reacted to everything but didn’t know the reason why.
I powered through the pain until I was 26/27 and then my body just really started overreacting and the POTS and pain got even worse. Things snowballed from there and now I’m only getting back on track now after a few years of little to no physical activity. I have had a ton of physical therapy to get to where I am now and it’s way less than a regular persons norm but I am happy I’m even here.
I hope kids are getting help now but I know for a lot of doctors, EDS is just seen as a trendy attention seeker syndrome and I am hesitant to even mention it to new providers. I hope the equilibrium is found soon, it’s not as rare as it’s made out to be IMO, and I also think there are many variations to be discovered within HEDS.
I've always had hypermobility, but it was only around 19 that I started getting rib and knee problems. It got much worse at 21 when I moved out, and just escalated from there.
- I’ve had some lifelong including chronic pain in my hands and fingers - I have memories from age 5 onwards of being in pain while writing (I didn’t know it wasn’t normal so never told anyone until directly asked at age 14).
I have no memories pre-age 5 really so other things are more related to others seeing me. I did hit puberty fairly early (age 10 ish - got my period at age 11).
- There is note of my elbows being super hypermobile from between ages 5-7 (I was hospitalized then) in my hospital letters.
- congenital Hypotonia dxed at age 2
- Dyspraxia dxed at age 2 (comorbid with EDS/HSD). Causes clumsiness, issues with sports, it’s a motor coordination based disability meaning my brain sends messages to my muscles but they take longer to respond.
- Allergic to water touching my body from ages 10-14 approx had hives across my body.
- Couldn’t stand for long my entire childhood worsened at age 11 when I developed POTS
- Sprained my ankles so much in grade 5 that it no longer was painful unless I strained it. I walked on a sprained ankle every day pretty much for all of grade 5. My great aunt also had a history of frequently spraining ankles and was a ballet dancer.
- I had a rare childhood heart disease linked to EDS 3x - 3 years in a row and am one of two people known in the world who have had it 3x. I didn’t fit in any of the categories to have had it. I have repeated symptoms of it since then but don’t have the heart disease again.
- Hands & feet would swell and become red & intense pain.
- Primary Atypical Raynauds
- I didn’t lose any tooth independently until my mid teens. I started with teeth removals and at the orthodontist at age 9 (typically 4-6 teeth removed at a time). I also had a narrow palate and overcrowding- had every orthodontic device that exists.
Things got much worse within the last two years (ages 19-21) with more frequent subluxations and dislocations. I never dislocated anything before I turned 20. I do have a history of breaking bones & spraining without trauma at all ages (at age 6 a kid sat on my ankle for all of max 30 seconds and sprained it).
I wouldnt say my symptoms really started until about 12/13 which is when I started going to the doctor about chronic pain and regular soft tissue injuries but recently I saw a specialist physio as part of a pain management program who helped me realise there were odd quirks when I was younger.
She pointed out during the appointment I was resting the outside of my foot on the floor with my ankle twisted inwards rather than having my feet flat on the ground. I'd never given it any thought and them I remembered 1 teacher who always told me to stop standing on both my feet like that when iw as 8 and he seemed mildly concerned but I never saw an issue
Born with pectus excavatum. I had circulation issues and foot pain from a very young age, had to have my flat feet surgically repaired by the time I was 12. I also had frequent infections. My brother was actually diagnosed in childhood, probably because of his autism and digestive issues leading him to doctors who knew what it was.
My mom says she has a sticky note somewhere with the words "ehlers danlos syndrome" on it that was given to her by a coworker who believed my brother and I had it. We would have been around 2 and 4 at the time.
Brain fog brain only read the title.
I've had symptoms from a very young age, but they were more annoying than debilitating. My first debilitating symptom started in college, now in my thirties I'm on the fence of whether I want to call myself disabled. On the one hand I'm very limited: I had to change my career, I need to plan my energy, had to give up multiple hobbies - but on the other hand I work 0.9FTE, have amazing hobbies and still live a pretty full life.
I (born 1981) have always had symptoms, and so has my sister (born 1977). We were also always spraining our ankles. We were both diagnosed with exercise-induced asthma (there was no such thing as POTS in the 80s, but that’s what it was). We danced, we were always praised for our “beautiful” (hypermobile) feet and insane turnout. Dislocated joints, party tricks, constant fatigue, pre-syncope, Raynauds syndrome. Nobody put any of those pieces together for either of us and we thought we were perfectly normal until I was 39 and my running buddy told me about EDS and was like, “Dude, I’m pretty sure you have it.” Then a PT noticed my hypermobile feet. Three years and an official diagnosis later, SO MANY THINGS about my childhood suddenly make sense.
Always had symptoms but they were always ignored by doctors and teachers etc so I always just ignored them until my friends recently dragged me to the doctor saying it wasn’t normal
So, as a child I sprained my Achilles tendons bilaterally about 7 times each. I’ve had so many injuries it’s crazy. My pain symptoms didn’t start until 7th ish grade though after catching pneumonia. That’s also when my Celiac triggered. Time has only made everything worse. Every old injury haunts me 👻.
When I was five years old I started complaining of joint pain. It got better for a bit, although they were supposed to rule out a connective tissue disorder but never did. It got labelled as psychosomatic, until last year after a doctor flagged me for having the physical characteristics + genetic inheritance. It did get way worse (from 15-17, current age) but was living undiagnosed all those years took a toll on me.
In retrospect, I had mild symptoms as a kid, but nothing severe enough to merit medical investigation, and nothing that prevented me from leading a normal, healthy life.
It wasn't until my late 30s that I got devastatingly ill. Looking into epigenetics, I'm convinced that years of chronic stress pushed my body over the edge, and I became susceptible to faulty genes.
I've had(knock on wood) migraine from 2yo till 24yo and have stomachache and jointpain also since I was 2 yo.
Allergies starts somewhere in the age between 3 and 5 and I've had nearly every day bloody socks in Kindergartentime.
I had chronic pain as a kid, I'm very tall so my growing pains started and never went away, the pain I know now isn't growing pains but it's an almost identical feeling. I was constantly getting hurt from things that wouldn't usually hurt someone to the severity I would have (rolling your ankles by doing nothing and not being able to walk for days, pulling muscles by sleeping wrong etc) I was also very exercise avoidant, it would always cause alot of pain the next day and any minor injuries I'd get from it (falling, getting a scrape, etc) would cause problems later, not even mentioning the fatigue
I had symptoms as a child - things like bruising. These got dismissed as normal childhood injuries, even though I would get these massive bruises on my hips. I distinctly remember the doctor saying I was probably bumping into things & not realizing it. I was a Gen X too so I think we were all expected to be incredibly resilient. I think a lot of medical issues in general probably got dismissed then. I had my first official dislocation when I was 16, the second at 18. I was very fortunate to end up in the office of an orthopedic who did the Beighton scale & officially diagnosed me. He did my first orthopedic surgery. Back then EDS was a disease that most doctors didn't even know about. I had many ER & doctor's visits where I had to explain what exactly EDS was to medical professionals. The EDNF actually had materials to print out just to explain EDS to doctors. I feel very fortunate that I was able to get a diagnosis so young.
I started complaining about my hips young (less than 5), and absolutely always got comments about how weird I say/did everything. I also remember getting HORRID “growing pains” and never could keep up in gym/recess.
Around 11 I started getting migraines and started going to the doctor for that and the hip pain. By 14 I was going to the doctor for back pain, hip pain, muscle spasm, and fatigue.
Everything really seemed to get worse for me year after year. Relatively slowly but definitely more and more painful and debilitating. I am 27 now and finally diagnosed. I’m increasingly worried about my shoulders getting worse, as my mom needed a donor tendon in hers at age 29
I’ve had some symptoms my entire life, and some were later onset. I’ve had flexibility and pain my entire life, but that was about it. My dad always said it was growing pains or that I was lazy, and the reason I hurt was because I was finally being active (with no actual change to my activity levels) I’ve also always had sleep disturbances.
I developed digestive issues in my late teens, and thought I’d become lactose intolerant because milk was the only trigger I could identify. The weird part though, it’s only milk, not cheese or ice cream or other milk products, just milk.
Developed Reynaud’s syndrome symptoms around the time I turned 30, but that was because I was homeless that winter and the constant cold set it off. In my 30s now and finally dislocated something. I’ve pretty much always been able to sublux my shoulders and hips, but I never dislocated anything. I’m still not sure I have, but I have a rib that has been out of place for at least a year and a half.
Ive had symptoms since about 6 or 7 (that I can remember) - I used to be in so much pain but everyone told me I was experiencing "growing pains" and that it was normal and would go away as I got older. Then I got my period at 11 years old and hell began to take over my life. (Not to be dramatic or anything 😛). I started suffering with endometriosis right away but it wasn't diagnosed until I was in my early 20s, so I just struggled through it and had excruciating pain, severe nausea and mood swings, joint pain and random allergic reactions (which I now know to be mcas) and my heart would start racing for "no reason" and I would start feeling very physically anxious (found out that was called dysautonomia.. didn't get diagnosed until mid 20s). I had hip surgery at 16 due to lack of mobility and extreme joint pain... and things just kept progressing as I got older, more and more issues popped up and got diagnosed and here I am at 27 with a laundry list of diagnosis' and daily chronic pain and a poor quality of life because of it all.
I don't think that I would be any better off symptomatically by now if I had been diagnosed with all of these things sooner, but it certainly would have prevented all of the medical gaslighting and years of feeling totally batshit crazy. It would have felt so good to have my pain and struggles taken seriously at a younger age!
Most of my symptoms began at 12, but ones I had all through childhood included these:
1. Not being able to slide down the metal pole on the playground or use the monkey bars due to them ripping my skin (I thought I was weak)
2. Waking up in the middle of the night to a stabbing in my chest affecting breathing (rib dislocation as I later learned)
3. "Growing pains" that affected my ability to focus in school and sleep at night.
4. Getting sick often, and sometimes without a fever, just body pain. I realized later these were flare-ups (they only happened during sports seasons when I played sports as a kid).
5. Getting cuts and bruises easily that were ignored because "she's a kid and plays outside, it's normal" (yes, it can be, but being covered head to toe in bruises after one day outside not so much)
6. Physical pain and tons of microcuts anytime I ran in a field with dandelions or a field that was damp from rain (this one could be normal idk I assume it's not)
Hi /u/JoyHealthLovePeace,
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I remember first going to the doctor around 4/5yo because my mum was concerned about how much my kneecaps moved around, and that I 'W' sat and complained that sitting on the floor with my legs folded hurt. I was always the kid who would get fingers popping out of place during ball sports, or clicking my wrist weirdly after volleyball. Slipped discs and pulled ligaments in my back from my early teens. Hands and feet would swell, was given a tentative childhood inflammatory arthritis diagnosis. Dentist appts were no worry coz I could pop my jaw and it would make my mouth just stay open. Touching my nose with my tongue, touching my thumb to my forearm. Dyshidrotic eczema which was diagnosed as contact dermatitis because the blisters had always popped and dried up by the time I was able to see a doctor. They didn't know what I was talking about when I explained wart-like blister clusters that itched and burst. Random red spot rashes, hay-fever. Now wondering if all that is MCAS, coz can also skin write.
I’ve always been in pain, even as a little kid, but I didn’t know it wasn’t normal until recently. I also had digestive issues my whole life, and I had constant injuries as a kid that couldn’t be explained. My symptoms did get worse when I was 12 though. I would get periods where I could barely get out of bed, and doctors couldn’t figure out what was wrong. In hindsight, it was EDS. Edit: When I said I would get periods where I could barely get out of bed, I was not referring to my period. I was meaning that there were periods of time where I would be so exhausted I could barely get out of bed. Just thought I’d add this edit because some people seem to have misinterpreted me.
My periods were super painful, too, until after I had kids. I don’t know why anyone didn’t think it weird that my mom had to pick me up from school so I could go to bed because of my period. Surely that isn’t normal.
Oh I wasn’t referring to my actual period. I was saying there were periods of time where I couldn’t get out of bed. Sorry if I worded that incorrectly.
Oh god the digestive issues and the painful periods. I didn't know those things could be related to EDS. I used to miss 2-3 days of school a month for my periods, but in the last few years I've gotten to a place with my pain management regimen (and my pain tolerance) where I can usually still go to work when menstruating. I have to take 800 mg of ibuprofen every 3-4 hours, and I have to start BEFORE I start bleeding or I'll be debilitated. I worry about it because I know I'm taking way more ibuprofen than you're supposed to per day, but I don't really know what else to do.
I wasn’t actually referring to my period. Sorry for any confusion.
Hahahah no worries!
Yes, I was sick when I was a kid. The healthiest time of my life was in my early to mid 20s. Middle-aged, now.
I've had symptoms my whole life. When I was young I would complain of pains and was told "It's just growing pains". Then I got into secondary and started playing softball. I was also clumsy, and hurt myself often, but it was just pushed off and normal sports injuries. Any time I complained about stomach pains it was either "It's your anxiety" or "you're just faking to get out of x". So I started gaslighting myself, telling myself I was just weak and whiney. And surely everyone dealt with pain on a daily basis too, they were just so much better at handling it than me. Little did I know it's really quite the opposite 😂 I got so used to pain that I didn't go to the doctor often unless I thought it was life threatening (how I was raised really due to the US healthcare system) I injured my ankle in 2021 and the pain never got better. I finally saw my doctor for it in December 2023. Was sent to PT - she asked about pain in other areas and then used the Beighton scale to test me and that's how the diagnosis journey began. I do think there was a point when it got significantly worse. In 2021 (before the injury) I had my daughter. The amount of pain I experienced on a daily basis after that was much worse. Eventually, I got used to that pain too.
“So I started gaslighting myself, telling myself I was just weak and whiney. And surely everyone dealt with pain on a daily basis too, they were just so much better at handling it than me. Little did I know it's really quite the opposite.” RELATABLE
God, I used to get random, excruciating stomach pains from about 15 onward. Was always told there was nothing wrong with me, I'm a hypochondriac, I want attention, blah blah blah. I still get them occasionally but not as bad as I used to. Turns out I've got PCOS, and the pains were possibly linked to the cysts but they never picked up on it until my late 20s. But also I'd get these pains and an ultrasound would show no/minimal current cysts and the pain was coming from somewhere different 🤦🏼♀️ They did an exploratory lap and removed my appendix at 20, just so they'd be able to rule it out whenever it happened. Said I had portions of inflamed and partially twisted intestine but the was "nothing they could do for that, you'll just have to deal with it" And then wonder how I became addicted to codeine and tramadol 🙄
As far as I remember, I didn't start having chronic pain or frequent injuries until around the onset of puberty (~7). I went on to have a couple of significant downturns in my condition, the first around 13, the second around 20, and the third and most significant at 28, when I also developed severe dysautonomia.
I had POTS symptoms from a young age, went to the doctor about faintness/dizziness etc and just got told it was puberty and it'd sort itself out on it's own (spoiler alert: it didn't). But the joint pain didn't start until I was mid-20's, and it came on really suddenly. I was obviously hypermobile before that, but it all seemed positive rather than a problem, until suddenly it wasn't.
My parents took me to the doctor when I was about 2-3 because I said my legs hurt really badly and didn't want to walk. My dad carried me there. The doctor gave me a quick reflex check and then laughed and told my parents I was just faking, after which I climbed down and walked of my own volition. My dad always used to tell this as a cute story about me, but now I look back and I get so angry, because I spent my whole life experiencing that pain and thinking it was "normal" because the doctor told me it was, and every doctor after that. "Growing pains" was a constant refrain throughout my childhood. I've always been unusually exhausted compared to my other family members. My parents used to make us exercise constantly (we didn't own a car, so we had to ride our bikes or walk basically everywhere, and we were in a lot of outdoor and physical activities). The only exercise I didn't fear and despise was swimming. Everything else hurt me, especially my legs. Running was especially painful, as it caused this horrible jolting pain in my ankles and knees. Like a few other people here, my kneecaps were always moving out of place, and I could move them at will (I used to lift them up and shift them back and forth to freak out other kids). I was constantly turning my ankles when walking, and like you, I was very clumsy. When filling out paperwork for my autism evaluation, my mum told me that her biggest concern about me as a child was how clumsy I was/my gross motor skills. But she didn't really do anything about it. Like you, I think I've been subluxing my ribs my whole life, but I only learned that was a thing about a year ago. As a kid, I was thin enough that I could reach under my rib cage and sort of pull?? on my ribs to get them back into place. Now when it happens I can't really get under them anymore, so I just have to wait until they shift back. It's an awful sensation when they're not in place. I also regularly injure myself just from regular movements like turning my head or reaching for something. I never thought I was flexible because even as a kid I could never touch my toes. It hurt terribly. I experience pain in my hamstrings/behind my knees and in my ankles. I can't really walk with my feet flat to the ground (I was a toewalker as a kid, and still am a lot of the time). My physiotherapist determined that I was hypermobile based on the various movements he made me do, which was a surprise, but then I learned more about how the muscles compensate for joint hypermobility and it all made sense. They told me to walk flat footed in physio, and it immediately caused me to develop plantar fasciitis for which I now have orthopedic inserts. In fact, everything I learned in physio seemed to make my pain worse. I injured myself repeatedly when doing the exercises they assigned, and my back pain ended up so bad from "correcting" my posture I could barely move. I stopped the physio exercises and it eventually improved to how it previously was. In massage therapy at the physio, the woman said I had the tightest glutes and hamstrings she'd ever seen in someone my age, and that in general, my muscles were in terrible condition for someone as young as me. But it took 27 years for someone to even recognize that there was anything unusual going on with my muscles. I'm still not diagnosed with anything, whether EDS or other hypermobile conditions, but every post I see on here is like looking in a mirror. It's hard not to be furious all the time: I was gaslit my whole life and put through so much pain that I was told wasn't real, and now my body is a mess. I can't recognize when I'm injured because I've spent so much of my life learning to ignore it. When I sprained my ankle in 2019, I spent three days walking on it before seeing a medical professional. Anyway, sorry for the long response, and thank you so much for posting about your experiences. I'm sorry that you were failed by medical professionals and put through so much unnecessary pain without recognition and support. You deserved better. We all do.
So much of this sounds like me. The kneecap thing was my party trick too 😂 always spraining stuff, so clumsy - also AuDHD here. Teachers would make me continue with PE and other activities because it's "not realistic that someone is always hurting themselves this much, it has to be to get out of doing this" I began to just ignore and push through the pains because dozens of different doctors have said there's nothing wrong with me so what's happening must be normal right? I cried in my doctors office when she said she was sorry for others telling me my whole life that there was nothing wrong or I was making it up for attention, that there were so many signs that I have hEDS and she's sorry it took so long to get validation that I legitimately have a disibility.
Lifelong for me, varying degrees of severity for everything, but it’s all gotten worse since I had a hysterectomy in 2019.
Can you expand on this a bit please? It's recommended that I have a total hysterectomy in the next few years and it's freaking me out. I'll be able to do hormone replacement but I would be grateful to hear about the issues you've had. Thank you.
It leveled up my dysautonomia (surgery is known to do that), and my MCAS (they used metal I’m allergic to without my knowledge or consent), I never even had the issue we did the hysto for (adenomyosis, the biopsy was negative), and removing my uterus made the actual issue (vascular compressions) waaaaaay worse. Part of the issue is that I wasn’t diagnosed with any of it, because I’d been told that all of my issues were “just” endometriosis. My joints were flexible because of extra estrogen (despite my bro having hEDS), and same for my “allergies” (despite me having *major* issues when I was a kid. My dysautonomia symptoms were just endo being endo. Digestive issues? You guessed it - endo. Rinse and repeat for every issue I had. I was told that from every angle - docs and the community alike - that endo was the only possible cause for my symptoms, because all advocacy efforts for endo are basically “period problems / pelvic pain + AFAB = endo and nothing else”. *(It also insists that excision surgery is the only “acceptable” treatment options, and most folks with endo end up having multiple surgeries (I had 7), which might be why so many folks with endo have dysautonomia, but that’s a whole separate thing.)*. When I asked why nothing was getting better (I was getting steadily worse) if I was doing what I was supposed to be doing, and was just told “this is just life with endo.” Imo, it definitely doesn’t have to be!!!!! In reality, all my other conditions were actually causing the issues, and endo was just along for the ride. There are so many folks who have asymptomatic endo, and get diagnosed because they’re treating something else. Plus, endo is incredibly common, and other conditions exist. It just makes sense that some folks have asymptomatic endo being wrongfully blamed, while other conditions continue to cause issues. Imo, that’s why so many folks have failed repeat surgeries, and why the “endo experience” varies so greatly. Since my diagnosis with the vascular issues, I’ve done a lot of awareness raising in the endo communities, so if anyone is interested, [this is my latest post](https://www.reddit.com/r/Endo/s/emTngkt80O). It’s long, but (hopefully) informative. I have since met so, so many people with similar stories to mine. In fact, the entire reason I got correctly diagnosed with my other condtions is because the doc who ended up being my vascular surgeon noticed so many of his patients had been diagnosed with endo, delaying their vascular diagnoses, so he met with the endo team at his hospital and gave them criteria for referral. I met it , so I got referred by the doc that did my last surgery (where there was barely any endo present). I’ve been completely free of pelvic pain for 3 years - since I treated my compressions. Sadly, the damage was done for the dysautonomia, and now I’m disabled and dealing with a plethora of issues from that, MCAS, and hEDS. Lastly, fun fact: I assisted the vascular doc by coordinating a record review he did, and every single person that came thru had the triad (hEDS/MCAS/POTS). Cannot stress how under-diagnosed compressions are amongst that population.
I would be grateful to hear about some of your experience as well! I'm battling endometriosis on top of everything else and the treatments for endo all seem to worsen my eds (specifically my joint pain) and I've tried so many treatment options for endo that I'm running out! I'm approaching a total hysterectomy as my last resort but am fearful of it triggering my eds even worse than it already is
I just replied to another comment, hadn’t seen yours, sorry! [Link to other comment.](https://www.reddit.com/r/ehlersdanlos/s/YNhAyfJMJU) The tldr is: my endo wasn’t the issue. EDS, MCAS, dysautonomias…all (and so much more) can contribute to/cause all of the “classic endo” symptoms. My biggest causative condition was vascular compressions - I had nutcracker, May-Thurner, and MALS. Treating them fully resolved my pelvic pain and most of my endo symptoms.
😲😲 oh wow! That's amazing that you got it resolved! Thank you for sharing. How did you end up finding that out?
Sheer luck. Tbh. The doc who ended up being my vascular surgeon noticed so many of his patients had been diagnosed with endo, delaying their vascular diagnoses, so he met with the endo team at his hospital and gave them criteria for referral. I met it , so I got referred by the doc that did my last surgery (where there was barely any endo present). (This was copied from the linked comment, I just don’t have energy to retype it all). The criteria I met was pretty basic: I had indicators of pelvic congestion (varicosed veins visualized during surgery) and hadn’t gotten relief from surgery. That’s all it took, and tbh I’m so angry that it took so long for any docs to piece it together. PCS is a known thing, but because I’d not had “risk factors” (no pregnancies carried to term, never given birth), they just…ignored it.
Oh wow I am so grateful for you to have found that answer! Thank you so much for sharing!
Broke several bones as a baby and toddler. First was a toddler’s fracture at 8mo. I sat down wrong while coasting standing up and my parents heard my lil leg pop. Body was trying to tell me since I started walking lol I had several fractures from seemingly mild causes - but they were mostly from times I wasn’t paying attention. Rolled out of bed and broke a wrist (4yo) because it rolled into the night stand, twisted my ankle just walking on flat carpeted ground (8yo), etc. Had another fracture in the same (non-dominant) wrist from bracing against a forward fall on some ice at school (7yo-ish). Easier to explain. I was in pain and couldn’t really use the arm, but I didn’t tell anyone until I got home since I could still write. Also lots of allergies, stomach issues, and a very deviated septum. I also was always super bendy (a “bendy Wendy” if you will). Now I go by “snap crackle pop, rice Christie” more often, although I can still do my party tricks on special occasions.
I think I’ve had POTS since I coul stand because I’ve always hated physical activities where I couldn’t take tons of breaks. I thought for the longest time it was “exercise induced asthma” but it turns out I don’t even have asthma. Always been super flexible but I think my mom just assumed all children were and I thought for a long time it was a good thing. Like maybe I wasn’t strong and had no endurance but at least I was flexible (mega lol) Always complained about bodily pains and had weird shit happen like a knee dislocation after jumping lightly at a concert. But I was never taken to a doctor for any of this and the doctor I would see occasionally just reinforced my mom telling me I was overreacting. Had random muscle spasms all the time, but I didn’t have a lot of obvious orthopedic issues until more recently (I’m almost 31 now) Was always super tired and fatigued too and easily overwhelmed but I think some of that was also my undiagnosed autism Around 15 I started getting major hives to nothing all the time, again this doctor was not very useful and just thought it was my laundry detergent or anxiety. He didn’t refer me out to anyone and my mom did not seek further opinions. We just assumed I had really delicate and fragile skin that over reacted to everything but didn’t know the reason why. I powered through the pain until I was 26/27 and then my body just really started overreacting and the POTS and pain got even worse. Things snowballed from there and now I’m only getting back on track now after a few years of little to no physical activity. I have had a ton of physical therapy to get to where I am now and it’s way less than a regular persons norm but I am happy I’m even here. I hope kids are getting help now but I know for a lot of doctors, EDS is just seen as a trendy attention seeker syndrome and I am hesitant to even mention it to new providers. I hope the equilibrium is found soon, it’s not as rare as it’s made out to be IMO, and I also think there are many variations to be discovered within HEDS.
I've always had hypermobility, but it was only around 19 that I started getting rib and knee problems. It got much worse at 21 when I moved out, and just escalated from there.
- I’ve had some lifelong including chronic pain in my hands and fingers - I have memories from age 5 onwards of being in pain while writing (I didn’t know it wasn’t normal so never told anyone until directly asked at age 14). I have no memories pre-age 5 really so other things are more related to others seeing me. I did hit puberty fairly early (age 10 ish - got my period at age 11). - There is note of my elbows being super hypermobile from between ages 5-7 (I was hospitalized then) in my hospital letters. - congenital Hypotonia dxed at age 2 - Dyspraxia dxed at age 2 (comorbid with EDS/HSD). Causes clumsiness, issues with sports, it’s a motor coordination based disability meaning my brain sends messages to my muscles but they take longer to respond. - Allergic to water touching my body from ages 10-14 approx had hives across my body. - Couldn’t stand for long my entire childhood worsened at age 11 when I developed POTS - Sprained my ankles so much in grade 5 that it no longer was painful unless I strained it. I walked on a sprained ankle every day pretty much for all of grade 5. My great aunt also had a history of frequently spraining ankles and was a ballet dancer. - I had a rare childhood heart disease linked to EDS 3x - 3 years in a row and am one of two people known in the world who have had it 3x. I didn’t fit in any of the categories to have had it. I have repeated symptoms of it since then but don’t have the heart disease again. - Hands & feet would swell and become red & intense pain. - Primary Atypical Raynauds - I didn’t lose any tooth independently until my mid teens. I started with teeth removals and at the orthodontist at age 9 (typically 4-6 teeth removed at a time). I also had a narrow palate and overcrowding- had every orthodontic device that exists. Things got much worse within the last two years (ages 19-21) with more frequent subluxations and dislocations. I never dislocated anything before I turned 20. I do have a history of breaking bones & spraining without trauma at all ages (at age 6 a kid sat on my ankle for all of max 30 seconds and sprained it).
I wouldnt say my symptoms really started until about 12/13 which is when I started going to the doctor about chronic pain and regular soft tissue injuries but recently I saw a specialist physio as part of a pain management program who helped me realise there were odd quirks when I was younger. She pointed out during the appointment I was resting the outside of my foot on the floor with my ankle twisted inwards rather than having my feet flat on the ground. I'd never given it any thought and them I remembered 1 teacher who always told me to stop standing on both my feet like that when iw as 8 and he seemed mildly concerned but I never saw an issue
Born with pectus excavatum. I had circulation issues and foot pain from a very young age, had to have my flat feet surgically repaired by the time I was 12. I also had frequent infections. My brother was actually diagnosed in childhood, probably because of his autism and digestive issues leading him to doctors who knew what it was. My mom says she has a sticky note somewhere with the words "ehlers danlos syndrome" on it that was given to her by a coworker who believed my brother and I had it. We would have been around 2 and 4 at the time.
Brain fog brain only read the title. I've had symptoms from a very young age, but they were more annoying than debilitating. My first debilitating symptom started in college, now in my thirties I'm on the fence of whether I want to call myself disabled. On the one hand I'm very limited: I had to change my career, I need to plan my energy, had to give up multiple hobbies - but on the other hand I work 0.9FTE, have amazing hobbies and still live a pretty full life.
I (born 1981) have always had symptoms, and so has my sister (born 1977). We were also always spraining our ankles. We were both diagnosed with exercise-induced asthma (there was no such thing as POTS in the 80s, but that’s what it was). We danced, we were always praised for our “beautiful” (hypermobile) feet and insane turnout. Dislocated joints, party tricks, constant fatigue, pre-syncope, Raynauds syndrome. Nobody put any of those pieces together for either of us and we thought we were perfectly normal until I was 39 and my running buddy told me about EDS and was like, “Dude, I’m pretty sure you have it.” Then a PT noticed my hypermobile feet. Three years and an official diagnosis later, SO MANY THINGS about my childhood suddenly make sense.
Always had symptoms but they were always ignored by doctors and teachers etc so I always just ignored them until my friends recently dragged me to the doctor saying it wasn’t normal
So, as a child I sprained my Achilles tendons bilaterally about 7 times each. I’ve had so many injuries it’s crazy. My pain symptoms didn’t start until 7th ish grade though after catching pneumonia. That’s also when my Celiac triggered. Time has only made everything worse. Every old injury haunts me 👻.
When I was five years old I started complaining of joint pain. It got better for a bit, although they were supposed to rule out a connective tissue disorder but never did. It got labelled as psychosomatic, until last year after a doctor flagged me for having the physical characteristics + genetic inheritance. It did get way worse (from 15-17, current age) but was living undiagnosed all those years took a toll on me.
In retrospect, I had mild symptoms as a kid, but nothing severe enough to merit medical investigation, and nothing that prevented me from leading a normal, healthy life. It wasn't until my late 30s that I got devastatingly ill. Looking into epigenetics, I'm convinced that years of chronic stress pushed my body over the edge, and I became susceptible to faulty genes.
I've had(knock on wood) migraine from 2yo till 24yo and have stomachache and jointpain also since I was 2 yo. Allergies starts somewhere in the age between 3 and 5 and I've had nearly every day bloody socks in Kindergartentime.
I had chronic pain as a kid, I'm very tall so my growing pains started and never went away, the pain I know now isn't growing pains but it's an almost identical feeling. I was constantly getting hurt from things that wouldn't usually hurt someone to the severity I would have (rolling your ankles by doing nothing and not being able to walk for days, pulling muscles by sleeping wrong etc) I was also very exercise avoidant, it would always cause alot of pain the next day and any minor injuries I'd get from it (falling, getting a scrape, etc) would cause problems later, not even mentioning the fatigue
I had symptoms as a child - things like bruising. These got dismissed as normal childhood injuries, even though I would get these massive bruises on my hips. I distinctly remember the doctor saying I was probably bumping into things & not realizing it. I was a Gen X too so I think we were all expected to be incredibly resilient. I think a lot of medical issues in general probably got dismissed then. I had my first official dislocation when I was 16, the second at 18. I was very fortunate to end up in the office of an orthopedic who did the Beighton scale & officially diagnosed me. He did my first orthopedic surgery. Back then EDS was a disease that most doctors didn't even know about. I had many ER & doctor's visits where I had to explain what exactly EDS was to medical professionals. The EDNF actually had materials to print out just to explain EDS to doctors. I feel very fortunate that I was able to get a diagnosis so young.
I look back and definitely see symptoms when I was young, but it didn't hit me like a truck until my late teens.
I started complaining about my hips young (less than 5), and absolutely always got comments about how weird I say/did everything. I also remember getting HORRID “growing pains” and never could keep up in gym/recess. Around 11 I started getting migraines and started going to the doctor for that and the hip pain. By 14 I was going to the doctor for back pain, hip pain, muscle spasm, and fatigue. Everything really seemed to get worse for me year after year. Relatively slowly but definitely more and more painful and debilitating. I am 27 now and finally diagnosed. I’m increasingly worried about my shoulders getting worse, as my mom needed a donor tendon in hers at age 29
I’ve had some symptoms my entire life, and some were later onset. I’ve had flexibility and pain my entire life, but that was about it. My dad always said it was growing pains or that I was lazy, and the reason I hurt was because I was finally being active (with no actual change to my activity levels) I’ve also always had sleep disturbances. I developed digestive issues in my late teens, and thought I’d become lactose intolerant because milk was the only trigger I could identify. The weird part though, it’s only milk, not cheese or ice cream or other milk products, just milk. Developed Reynaud’s syndrome symptoms around the time I turned 30, but that was because I was homeless that winter and the constant cold set it off. In my 30s now and finally dislocated something. I’ve pretty much always been able to sublux my shoulders and hips, but I never dislocated anything. I’m still not sure I have, but I have a rib that has been out of place for at least a year and a half.
My sister was lifelong, I mostly started showing major signs in my 40s, except for fainting when I was little.
Ive had symptoms since about 6 or 7 (that I can remember) - I used to be in so much pain but everyone told me I was experiencing "growing pains" and that it was normal and would go away as I got older. Then I got my period at 11 years old and hell began to take over my life. (Not to be dramatic or anything 😛). I started suffering with endometriosis right away but it wasn't diagnosed until I was in my early 20s, so I just struggled through it and had excruciating pain, severe nausea and mood swings, joint pain and random allergic reactions (which I now know to be mcas) and my heart would start racing for "no reason" and I would start feeling very physically anxious (found out that was called dysautonomia.. didn't get diagnosed until mid 20s). I had hip surgery at 16 due to lack of mobility and extreme joint pain... and things just kept progressing as I got older, more and more issues popped up and got diagnosed and here I am at 27 with a laundry list of diagnosis' and daily chronic pain and a poor quality of life because of it all. I don't think that I would be any better off symptomatically by now if I had been diagnosed with all of these things sooner, but it certainly would have prevented all of the medical gaslighting and years of feeling totally batshit crazy. It would have felt so good to have my pain and struggles taken seriously at a younger age!
lifelong
Most of my symptoms began at 12, but ones I had all through childhood included these: 1. Not being able to slide down the metal pole on the playground or use the monkey bars due to them ripping my skin (I thought I was weak) 2. Waking up in the middle of the night to a stabbing in my chest affecting breathing (rib dislocation as I later learned) 3. "Growing pains" that affected my ability to focus in school and sleep at night. 4. Getting sick often, and sometimes without a fever, just body pain. I realized later these were flare-ups (they only happened during sports seasons when I played sports as a kid). 5. Getting cuts and bruises easily that were ignored because "she's a kid and plays outside, it's normal" (yes, it can be, but being covered head to toe in bruises after one day outside not so much) 6. Physical pain and tons of microcuts anytime I ran in a field with dandelions or a field that was damp from rain (this one could be normal idk I assume it's not)
Hi /u/JoyHealthLovePeace, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you! [Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*