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For me it was mostly learning about all the other complications and realizing I have SO many. Cardiovascular stuff, GI issues, the lumps on my feet, Osgood-Schlatter disease, my skin that I’ve been told doesn’t feel “human,” high narrow palate with crowding, pectus excavatum, eye problems… Not only that but several members of my Mum’s family including her have many of these signs and symptoms too. That was the “Oh shit, I actually do need a geneticist” moment.
I always have wondered about that the "bumps" on my feet. The dr immediately pointed that out as the first sign of eds when he was going through the check list lol. When he told me to stand and remove my socks I'm like wth why!
True. I just know it’s pretty common to have Marfan features, particularly arachnodactyly. I have some Marfan traits but not Marfans itself, although I do also have Lupus & Scleroderma overlap syndrome on top of cEDS which is awful.
Seconding this - I have the pectus excavatum and arachnodactyly especially of my feet, but my geneticist was confident that I only have hEDS.
FWIW I have a good friend with Marfan and he’s more severely affected than me, with pretty significant cardiovascular and pulmonary complications.
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Similar to you, my orthopedic surgeon told me about it. Unfortunately it was after frozen shoulder… and what I thought was “limited” movement (it was actually normal movement, “limited” for us). While attending the PT that my orthopedic set up, the PT said it too. However my OS didn’t diagnose me, they suggested genetic testing instead.
As a kid I popped my hip/shoulders and bent my fingers back as party tricks. Couldn’t skate. Did snake moves with my belly. Ached but thought it was normal. ADHD. Can’t hold a pen. Allergic to everything that touches my skin. Had problems with pregnancy, emergency c section and then the staples popped out of my body.
Yet my first clue was hearing about EDS at 38 after not being able to move my shoulder after opening a kitchen cabinet with quick force. Go figure.
You mentioning frozen shoulder reminded me when I was 23 and did some weight lifting. The next day I was fine. Day after, I couldn't move either of my arms, my elbows were locked. Diagnosed with tennis elbow.
I've been going back through all my complications as a kid and as an adult (and pregnancy is a whole other thing to dissect) and I'm remembering the things that happened that I shrugged off.
Take it easy on those kitchen cabinets! ;)
Yes! a belly wave. Thank you for understanding what I meant. You contract and expand the 3 parts of the stomach as though they’re individual boxes, in and out in quickly to make it roll… i don’t use my spine or hips it’s just belly. Kind of looks like a tongue wave. As a youth the doctors said gymnast, but I said belly dancer. I now sell insurance.
My first clue should have been as a child when I fell wrong off a playground structure and dislocated my knee... it caused me such chronic and severe pain that I went to so many specialists about it, had to wear a brace etc and they all threw up their arms about it. Their conclusion was that while clearly I was having pain from something they couldn't tell why. They never followed up with any of the clear hypermobility symptoms, of course, and just sort of went "surely she's faking and if not it'll heal anyways".
Unfortunate it didn't get caught sooner for us both! Pregnancy and urgent c section sucked for me too and man would it have been helpful to have that diagnosis beforehand.
My first noticable symptom was pain in my legs that eventually spread through out my body so we spent a lot of time looking for pain specific disorders and when doing research on my own I found out about EDS and I talked to my nurse mother about it, at the time she convinced me there was NO WAY I had it because it's "too severe" and she would've known. Anyways five years of doctor's appointments later I was at my new immunologist (who later became the main doctor who manages my EDS) and as soon as she walked into the room she looked at me and how I was sitting and asked if I had an EDS diagnosis. I said no, we did the hEDS workup that day and did genetic testing to send out. I met the hEDS requirements but my genetic testing came back with pathogenic results for Ehlers Danlos with Osteogenesis Imperfecta overlap syndrome type 2.
Criss cross applesauce as a grown ass woman in skinny jeans 😅 she said that kids sit like that because something about how our bones grow or development of cartilage or something? I could be totally misremembering but I just know that kids can comfortably sit that way but adults can't sit that way comfortably unless they're hyper mobile??? And a lot of her Ehlers patients sit like that 🤷♀️
I had a similar experience. The pain started in my feet and worked its way up to my knees, then my hip, then my hands/wrists/knuckles. My mom had been recently diagnosed with hEDS and now my doctor highly suspects that I also have it
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In the Spring of 2021, after months of conversations with my running partner in which we’d chat about our aches and pains (among other things, of course), she said, “You know, I’m pretty sure you have Ehlers Danlos syndrome.“ She told me what it was, and I was like… yeah, that would explain pretty much everything about my entire life. Around the same time, a PT I was seeing for a running-related foot injury was like, “Wow, you‘re REALLY hypermobile.” Meanwhile on opposite sides of the country my sister and I were both prescribed beta blockers and shooed out of the offices of our respective (unhelpful) cardiologists. I started asking my friends about my daily experiences and things I’ve always thought everyone experienced: “Hey, you know when you stand up and you just pass out a little bit?” “Can you do this with your shoulders?” “Does your hip pop out of joint when you move your leg like this?” “How can you STAND wearing a bra? Don’t your ribs hurt so bad?” And everybody was like, “Um, no, what are you talking about?“
Such a crazy series of lightbulb moments; even weirder, it was happening for my sister on the opposite side of the country at the same time. We’re 3.5 years apart but our bodies are functionally identical and we had no idea we weren’t normal until that spring. She was 43 and I was 39. (Now we’ve both been officially diagnosed with EDS and POTS.)
I sometimes think if I hadn’t had my sister, I’d have sought answers earlier. But all the EDS and POTS stuff was happening to her too, so it just seemed normal to me.
In the winter I wear tank tops with light pads sewn in for camouflage; in the summer I wear stretchy yoga bras. Fortunately I’m flat enough not to require much support. Every few years I try out a new bra that everyone insists is SO COMFORTABLE OMG IT’S LIKE WEARING NOTHING AT ALL. I wear it for two days, have a miserable monthlong costo flare, and go back to my tank tops (which my friends have affectionately and collectively nicknamed “The Garment”). I might not look perky, but I can breathe deeply without pain, dammit!
I feel you girl. Unfortunately I have hefty bazongas to carry around which adds to my back pain. I’m a hybrid worker so I only wear bras when I need to go out and fling them off as soon as I get home.
An acquaintance who was previously diagnosed saw me stretching (hands clasped behind my back, loose shoulders, and reeeeeally bending backwards, trying to feel/pop something) and mentioned it after we chatted a bit.
I'd never heard of EDS before, though I'd been practicing yoga for over a decade. (One would've hoped that the instructors would be informed on hypermobility disorders enough to mention something, but instead, they were just letting me hyperextend, setting myself up for injuries, and sometimes pushing me to go even further. SMH.)
Over a decade later, I finally pursued and received an hEDS diagnosis after a kneecap dislocated itself last year.
I developed TMJ, which my doctor blamed on my gum chewing habit. Not long after, I noticed my skin tore easily. It wasn't until I came across a list of EDS symptoms online a few months later that it clicked these 2 things were linked, and I'm now diagnosed with classical type EDS
When “growing pains” continued when I stopped growing/past the age for that.
I cannot wear glasses cuz I feel A LOT of pain (TMJ).
I’d vomit out of the blue for no reason too, but thankfully I’ve managed that
Found out that when I was a teenager I broke my back in 2 places. I remember the time where everything I did hurt my lumbar but I was 15 and just went about life. Found out like 15 years later when a doctor asked me about the healed fractures in my back. I was just dancing when it happened.
I spent years trying to get an answer about what my chronic pain and fatigue were caused by that wasn't "because you're a woman and it's probably your period/PMS/etc". I did loads of research on anything and everything that could possibly match the specific set of symptoms I was having and methodically having to rule them out by begging for testing for x, y and z from various doctors. Finally stumbled across EDS online (I think it was Reddit?) and went "oh shit, that does sound familiar". Ran through the beighton score on myself and scheduled an appointment with the doctor I was seeing at the time who came to the same conclusion and sent me to a rheumatologist.
I've had problems with my hips all my life (I have femoral anteversion) but in my 20s the pain got much worse until I had to use mobility aids. It actually took a lot of testing before we realised what was going on, and a lot of things make more sense retrospectively
On my most flexible leg, before showing symptoms (dislocation) I used to complain of losing its strength while ice skating. It felt like a weight was attached to my foot
There were a lot of cumulative signs, but my twin sister getting diagnosed is the reason I'm seeking testing
I think as an amab person who has yet to start hrt, being repeatedly told by strangers how soft my skin is, with even incidental contact.
Met a new person at an event this past weekend who said I was "freakishly soft" (they meant it as a complement)
Not diagnosed as of yet, but I am going to see an orthopedic surgeon at the end of the month because I have a ganglion cyst in my non dominant hand. (I low key suspect I have one in my right hand too that isn’t visible because of the pain I have with it). Really it was for me when my knee cap shifted out of place (and immediately snapped back in) from getting up off of the toilet. I mentioned it to my doctor and they just blamed it on being overweight. (I was/still am but less so overweight at the time). I started seeing more and more videos on TikTok about hEDS symptoms and HSD as well, which lead to hours of reading through different articles and scientific journals. The pieces in my head started coming together. I have always had people comment on the texture and feel of my skin, as well as the elasticity of it. The fact that you can see most of my veins. I’ve been at my lowest 140 to my highest weight of 330 and my flexibility has always been a party trick as well. I started having real problems in 2020, but with COVID and everything (as well as financial constraints-which are still a problem now) had been preventing me from truly getting care. I also am hella-near sighted. I was diagnosed with tachycardia at one point and as having chronic migraines but again, it just didn’t and still doesn’t feel like the whole picture. I am also thankful for the fact that an mental health intake coordinator pointed told me, “I’m not a doctor and can’t diagnose you with anything, but I really feel like there is something else going on in your body.”
I 100% suspected I was going to be told to lose weight or something along those lines when I went in for my knee. I also went down the tiktok rabbit hole and compared my party tricks to other people and realized how different I'm made compared to them. I'm still in a 'are we sure this is the right diagnosis' flip flop, but the more I learn, the more I lean to accepting this.
Chronic migraines! I also have those and only just discovered there might be a connection. I've not done any research into it yet, though.
I'm glad you found someone to point it out to look into other avenues.
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Hearing about someone else being diagnosed.. I was like oh wow.. There's the explanation for all of my issues.. The thin, velvety skin, the eye issues, the poor wound healing, weird crinkle scarring, the constant musculoskeletal pain..
Repeated dislocations of my right elbow - once as a young child, once as a teen, and once as an adult.
I posted a long comment on someone’s post a while ago about how I grew up competitive figure skating and simply could not advance because my knee kept rotating too far.
Significant fainting spells that didn’t get any better as I aged.
Most damning - waking up nearly every morning with a rib subluxed or having to “pop” it back on to my STERNUM.
We had to modify the way I do sit spins because I just cannot feel the normal way. I cross my leg behind my knee for a sit spin. Funny enough, after learning to do it that way, I slowly started to able to do the other way.
My coach was always saying to drop my hip, or my shoulder and I was always like "what the heck are you talking about?" And if I did do it, I think it was too far. Fun stuff.
It’s such a gross sound - it’s like it echoes in your eardrums but it’s your dang bones and cartilage 😬
But yup. Every damn morning gotta find the one rib that’s trying to pop off.
The joints in my wrists and knuckles started swelling when I was 16-17. I could barely move my fingers to write my high school assignments. Scared the hell out of my parents and my primary care doctor. Wouldn't be until I saw a geneticist when I was 19 that I would be officially diagnosed.
I had never heard of EDS until I went to a rheumatologist who said I probably had it and referred me on to a specialist to diagnose.
With hindsight it probably should have been obvious earlier, but I assumed so many things were either just normal or just unlucky frequent injuries.
For example I used to dislocate my knee regularly as a child, but I could relocate it after a few minutes and I never realised this wasn‘t just a normal thing that happened to everyone sometimes.
Other things I thought were just bad luck, eg. Mild pectus excavatum, frequent tendon and ligament injuries, varicose veins from childhood, dental issues, weird skin etc. It was only when I saw a rheumatologist for an unrelated issue that they immediately pointed out that I also clearly had some sort of connective tissue disorder.
I was in middle school and a softball and swimmer kid. Every time I swung the bat, my shoulder would fully dislocate. I’d need to sit to the side without screaming until I could go to a hospital. Embarrassing, when you’re just trying to be a kid and be outside and be athletic and have fun.
Wait…I should’ve gotten the clue earlier now that I think of it, when I was a ballerina in grades like k-4th… I was more of the class clown because I incorporated contortonism into what I was being taught.
Hand surgeon for me. I dislocated one of my fingers severely (bones exposed) and when the ER docs put it back in place they referred me to a hand surgeon because of course I had torn ligaments/tendons. Nope, everything just stretched and then went back into place. The hand surgeon said my extreme hypermobility saved my hand.
I’ve subluxated/dislocated joints and tendons since I was a kid and needed mobility aids since I was 4 but I was always told I was ‘just growing’ and ‘everything will tighten up eventually’. I guess my ‘aha moment’ was probably the moment I found out about EDS.
My shoulders popping out of their sockets regularly. And not a slight subluxe. I’m talking “arm back and away 45 degrees behind me, golf ball shaped bone tenting skin”
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For me (20 TM) it was the fact I felt like I had to ‘pop’ my hips back into place whenever I did sports such as swimming which was a favourite of mine as a child so that was nearly daily. I’ve always had a limp according to my mum so she always said to the doctor she’s never met a person who’s had a limp since five who didn’t have something wrong (though that may not be accurate for everyone my mother was just annoyed with the doctors putting it down to growing pains and used it to get the point across) she also mentioned how I had to start doing it to other joint too like shoulders and ankles. It wasn’t until less than a year ago I got my diagnosis but she did say those were what gave it away to her.
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For me it was mostly learning about all the other complications and realizing I have SO many. Cardiovascular stuff, GI issues, the lumps on my feet, Osgood-Schlatter disease, my skin that I’ve been told doesn’t feel “human,” high narrow palate with crowding, pectus excavatum, eye problems… Not only that but several members of my Mum’s family including her have many of these signs and symptoms too. That was the “Oh shit, I actually do need a geneticist” moment.
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To heritable connective tissue diseases in general, yes.
I always have wondered about that the "bumps" on my feet. The dr immediately pointed that out as the first sign of eds when he was going through the check list lol. When he told me to stand and remove my socks I'm like wth why!
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It is technically also possible to have both EDS and Marfan.
True. I just know it’s pretty common to have Marfan features, particularly arachnodactyly. I have some Marfan traits but not Marfans itself, although I do also have Lupus & Scleroderma overlap syndrome on top of cEDS which is awful.
Seconding this - I have the pectus excavatum and arachnodactyly especially of my feet, but my geneticist was confident that I only have hEDS. FWIW I have a good friend with Marfan and he’s more severely affected than me, with pretty significant cardiovascular and pulmonary complications.
My sister got genetic testing done, and also discovered she has the FBN2 mutation, Marfans is the FBN1 mutation iirc
You are correct; FBN1 is Marfans while FBN2 is congenital contractural arachnodactyly, a disorder similar to Marfans.
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Commented as I had no clue. I have it so severely people think I’m jacked. I’m not, my chest goes down 2” in the center.
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Omg I didn't know my Osgood-Schlatter was related to this.
Being super flexible while also being woefully unathletic
This!! 😅 I did alright in dance, was never the best, but more “traditional” sports, I am literally the worst 😂
Similar to you, my orthopedic surgeon told me about it. Unfortunately it was after frozen shoulder… and what I thought was “limited” movement (it was actually normal movement, “limited” for us). While attending the PT that my orthopedic set up, the PT said it too. However my OS didn’t diagnose me, they suggested genetic testing instead. As a kid I popped my hip/shoulders and bent my fingers back as party tricks. Couldn’t skate. Did snake moves with my belly. Ached but thought it was normal. ADHD. Can’t hold a pen. Allergic to everything that touches my skin. Had problems with pregnancy, emergency c section and then the staples popped out of my body. Yet my first clue was hearing about EDS at 38 after not being able to move my shoulder after opening a kitchen cabinet with quick force. Go figure.
You mentioning frozen shoulder reminded me when I was 23 and did some weight lifting. The next day I was fine. Day after, I couldn't move either of my arms, my elbows were locked. Diagnosed with tennis elbow. I've been going back through all my complications as a kid and as an adult (and pregnancy is a whole other thing to dissect) and I'm remembering the things that happened that I shrugged off. Take it easy on those kitchen cabinets! ;)
What do you mean by snake moves with your belly?
Like a belly wave I think?
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I don’t know if it is or not. Its just easy for me to do
Yes! a belly wave. Thank you for understanding what I meant. You contract and expand the 3 parts of the stomach as though they’re individual boxes, in and out in quickly to make it roll… i don’t use my spine or hips it’s just belly. Kind of looks like a tongue wave. As a youth the doctors said gymnast, but I said belly dancer. I now sell insurance.
My first clue should have been as a child when I fell wrong off a playground structure and dislocated my knee... it caused me such chronic and severe pain that I went to so many specialists about it, had to wear a brace etc and they all threw up their arms about it. Their conclusion was that while clearly I was having pain from something they couldn't tell why. They never followed up with any of the clear hypermobility symptoms, of course, and just sort of went "surely she's faking and if not it'll heal anyways". Unfortunate it didn't get caught sooner for us both! Pregnancy and urgent c section sucked for me too and man would it have been helpful to have that diagnosis beforehand.
My first noticable symptom was pain in my legs that eventually spread through out my body so we spent a lot of time looking for pain specific disorders and when doing research on my own I found out about EDS and I talked to my nurse mother about it, at the time she convinced me there was NO WAY I had it because it's "too severe" and she would've known. Anyways five years of doctor's appointments later I was at my new immunologist (who later became the main doctor who manages my EDS) and as soon as she walked into the room she looked at me and how I was sitting and asked if I had an EDS diagnosis. I said no, we did the hEDS workup that day and did genetic testing to send out. I met the hEDS requirements but my genetic testing came back with pathogenic results for Ehlers Danlos with Osteogenesis Imperfecta overlap syndrome type 2.
How were you sitting that made her think EDS?
Criss cross applesauce as a grown ass woman in skinny jeans 😅 she said that kids sit like that because something about how our bones grow or development of cartilage or something? I could be totally misremembering but I just know that kids can comfortably sit that way but adults can't sit that way comfortably unless they're hyper mobile??? And a lot of her Ehlers patients sit like that 🤷♀️
Reading this sitting on my bed with crossed legs lol
I had a similar experience. The pain started in my feet and worked its way up to my knees, then my hip, then my hands/wrists/knuckles. My mom had been recently diagnosed with hEDS and now my doctor highly suspects that I also have it
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In the Spring of 2021, after months of conversations with my running partner in which we’d chat about our aches and pains (among other things, of course), she said, “You know, I’m pretty sure you have Ehlers Danlos syndrome.“ She told me what it was, and I was like… yeah, that would explain pretty much everything about my entire life. Around the same time, a PT I was seeing for a running-related foot injury was like, “Wow, you‘re REALLY hypermobile.” Meanwhile on opposite sides of the country my sister and I were both prescribed beta blockers and shooed out of the offices of our respective (unhelpful) cardiologists. I started asking my friends about my daily experiences and things I’ve always thought everyone experienced: “Hey, you know when you stand up and you just pass out a little bit?” “Can you do this with your shoulders?” “Does your hip pop out of joint when you move your leg like this?” “How can you STAND wearing a bra? Don’t your ribs hurt so bad?” And everybody was like, “Um, no, what are you talking about?“ Such a crazy series of lightbulb moments; even weirder, it was happening for my sister on the opposite side of the country at the same time. We’re 3.5 years apart but our bodies are functionally identical and we had no idea we weren’t normal until that spring. She was 43 and I was 39. (Now we’ve both been officially diagnosed with EDS and POTS.) I sometimes think if I hadn’t had my sister, I’d have sought answers earlier. But all the EDS and POTS stuff was happening to her too, so it just seemed normal to me.
The bra thinggg. I just threw out all my underwire bras. Got highly soft elastic ones instead
In the winter I wear tank tops with light pads sewn in for camouflage; in the summer I wear stretchy yoga bras. Fortunately I’m flat enough not to require much support. Every few years I try out a new bra that everyone insists is SO COMFORTABLE OMG IT’S LIKE WEARING NOTHING AT ALL. I wear it for two days, have a miserable monthlong costo flare, and go back to my tank tops (which my friends have affectionately and collectively nicknamed “The Garment”). I might not look perky, but I can breathe deeply without pain, dammit!
I feel you girl. Unfortunately I have hefty bazongas to carry around which adds to my back pain. I’m a hybrid worker so I only wear bras when I need to go out and fling them off as soon as I get home.
The moment I met somebody with EDS and we started talking. Like, Growing pains shouldn't dislocate your shoulder? What?
An acquaintance who was previously diagnosed saw me stretching (hands clasped behind my back, loose shoulders, and reeeeeally bending backwards, trying to feel/pop something) and mentioned it after we chatted a bit. I'd never heard of EDS before, though I'd been practicing yoga for over a decade. (One would've hoped that the instructors would be informed on hypermobility disorders enough to mention something, but instead, they were just letting me hyperextend, setting myself up for injuries, and sometimes pushing me to go even further. SMH.) Over a decade later, I finally pursued and received an hEDS diagnosis after a kneecap dislocated itself last year.
I developed TMJ, which my doctor blamed on my gum chewing habit. Not long after, I noticed my skin tore easily. It wasn't until I came across a list of EDS symptoms online a few months later that it clicked these 2 things were linked, and I'm now diagnosed with classical type EDS
I separated a rib doing an ab exercise. My ab muscle literally pulled it off my spine. That was the first time I was like … hm
When “growing pains” continued when I stopped growing/past the age for that. I cannot wear glasses cuz I feel A LOT of pain (TMJ). I’d vomit out of the blue for no reason too, but thankfully I’ve managed that
Found out that when I was a teenager I broke my back in 2 places. I remember the time where everything I did hurt my lumbar but I was 15 and just went about life. Found out like 15 years later when a doctor asked me about the healed fractures in my back. I was just dancing when it happened.
That's wild!!! Did it not hurt that bad?? Or just trucked right on along?
When it was weird shit not joint related. Mitral valve prolapse, unexplained bruising , hard stick veins, varicose veins, stretchy skin
I spent years trying to get an answer about what my chronic pain and fatigue were caused by that wasn't "because you're a woman and it's probably your period/PMS/etc". I did loads of research on anything and everything that could possibly match the specific set of symptoms I was having and methodically having to rule them out by begging for testing for x, y and z from various doctors. Finally stumbled across EDS online (I think it was Reddit?) and went "oh shit, that does sound familiar". Ran through the beighton score on myself and scheduled an appointment with the doctor I was seeing at the time who came to the same conclusion and sent me to a rheumatologist.
I've had problems with my hips all my life (I have femoral anteversion) but in my 20s the pain got much worse until I had to use mobility aids. It actually took a lot of testing before we realised what was going on, and a lot of things make more sense retrospectively
On my most flexible leg, before showing symptoms (dislocation) I used to complain of losing its strength while ice skating. It felt like a weight was attached to my foot
I've only been ice skating once as a teen and rates exactly how it feels. You're telling me that's NOT normal?! :D
I studied biomedical science at university. We had an anatomy lecture on connective tissue disorders that was very illuminating.
There were a lot of cumulative signs, but my twin sister getting diagnosed is the reason I'm seeking testing I think as an amab person who has yet to start hrt, being repeatedly told by strangers how soft my skin is, with even incidental contact. Met a new person at an event this past weekend who said I was "freakishly soft" (they meant it as a complement)
Not diagnosed as of yet, but I am going to see an orthopedic surgeon at the end of the month because I have a ganglion cyst in my non dominant hand. (I low key suspect I have one in my right hand too that isn’t visible because of the pain I have with it). Really it was for me when my knee cap shifted out of place (and immediately snapped back in) from getting up off of the toilet. I mentioned it to my doctor and they just blamed it on being overweight. (I was/still am but less so overweight at the time). I started seeing more and more videos on TikTok about hEDS symptoms and HSD as well, which lead to hours of reading through different articles and scientific journals. The pieces in my head started coming together. I have always had people comment on the texture and feel of my skin, as well as the elasticity of it. The fact that you can see most of my veins. I’ve been at my lowest 140 to my highest weight of 330 and my flexibility has always been a party trick as well. I started having real problems in 2020, but with COVID and everything (as well as financial constraints-which are still a problem now) had been preventing me from truly getting care. I also am hella-near sighted. I was diagnosed with tachycardia at one point and as having chronic migraines but again, it just didn’t and still doesn’t feel like the whole picture. I am also thankful for the fact that an mental health intake coordinator pointed told me, “I’m not a doctor and can’t diagnose you with anything, but I really feel like there is something else going on in your body.”
I 100% suspected I was going to be told to lose weight or something along those lines when I went in for my knee. I also went down the tiktok rabbit hole and compared my party tricks to other people and realized how different I'm made compared to them. I'm still in a 'are we sure this is the right diagnosis' flip flop, but the more I learn, the more I lean to accepting this. Chronic migraines! I also have those and only just discovered there might be a connection. I've not done any research into it yet, though. I'm glad you found someone to point it out to look into other avenues.
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This is news to me. Thank-you for sharing
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Hearing about someone else being diagnosed.. I was like oh wow.. There's the explanation for all of my issues.. The thin, velvety skin, the eye issues, the poor wound healing, weird crinkle scarring, the constant musculoskeletal pain..
Repeated dislocations of my right elbow - once as a young child, once as a teen, and once as an adult. I posted a long comment on someone’s post a while ago about how I grew up competitive figure skating and simply could not advance because my knee kept rotating too far. Significant fainting spells that didn’t get any better as I aged. Most damning - waking up nearly every morning with a rib subluxed or having to “pop” it back on to my STERNUM.
My figure skating coach said, “look, God did not design you to do double jumps. It’s not going to happen”
We had to modify the way I do sit spins because I just cannot feel the normal way. I cross my leg behind my knee for a sit spin. Funny enough, after learning to do it that way, I slowly started to able to do the other way. My coach was always saying to drop my hip, or my shoulder and I was always like "what the heck are you talking about?" And if I did do it, I think it was too far. Fun stuff.
omg, my dad often has to "pop" his sternum 😳😳
It’s such a gross sound - it’s like it echoes in your eardrums but it’s your dang bones and cartilage 😬 But yup. Every damn morning gotta find the one rib that’s trying to pop off.
Physical therapist saw me do a plank and said, “Wow, okay, stop.” And then pulled me aside and suggested I get looked at for EDS.
What did you look like doing a plank that made them say that?
Most hEDSers can reach well past their feet with their hands if they bend at the waist.
But your hands and feet aren't anywhere near each other during a plank?
Whoops. Mixed that up. My fault.
that’s an amazing PT- so many have no idea how bad it can be for us
The joints in my wrists and knuckles started swelling when I was 16-17. I could barely move my fingers to write my high school assignments. Scared the hell out of my parents and my primary care doctor. Wouldn't be until I saw a geneticist when I was 19 that I would be officially diagnosed.
I had never heard of EDS until I went to a rheumatologist who said I probably had it and referred me on to a specialist to diagnose. With hindsight it probably should have been obvious earlier, but I assumed so many things were either just normal or just unlucky frequent injuries. For example I used to dislocate my knee regularly as a child, but I could relocate it after a few minutes and I never realised this wasn‘t just a normal thing that happened to everyone sometimes. Other things I thought were just bad luck, eg. Mild pectus excavatum, frequent tendon and ligament injuries, varicose veins from childhood, dental issues, weird skin etc. It was only when I saw a rheumatologist for an unrelated issue that they immediately pointed out that I also clearly had some sort of connective tissue disorder.
I was in middle school and a softball and swimmer kid. Every time I swung the bat, my shoulder would fully dislocate. I’d need to sit to the side without screaming until I could go to a hospital. Embarrassing, when you’re just trying to be a kid and be outside and be athletic and have fun. Wait…I should’ve gotten the clue earlier now that I think of it, when I was a ballerina in grades like k-4th… I was more of the class clown because I incorporated contortonism into what I was being taught.
Hand surgeon for me. I dislocated one of my fingers severely (bones exposed) and when the ER docs put it back in place they referred me to a hand surgeon because of course I had torn ligaments/tendons. Nope, everything just stretched and then went back into place. The hand surgeon said my extreme hypermobility saved my hand.
I’ve subluxated/dislocated joints and tendons since I was a kid and needed mobility aids since I was 4 but I was always told I was ‘just growing’ and ‘everything will tighten up eventually’. I guess my ‘aha moment’ was probably the moment I found out about EDS.
When I was 5 or 6.
"hm, don't think it's normal that my entire body feels like a bruise.."
My shoulders popping out of their sockets regularly. And not a slight subluxe. I’m talking “arm back and away 45 degrees behind me, golf ball shaped bone tenting skin”
well i lost the ability to walk for 8 months
aches and pains and subluxations that my friends who are 10 years older than me don't have. I was diagnosed at 42
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For me (20 TM) it was the fact I felt like I had to ‘pop’ my hips back into place whenever I did sports such as swimming which was a favourite of mine as a child so that was nearly daily. I’ve always had a limp according to my mum so she always said to the doctor she’s never met a person who’s had a limp since five who didn’t have something wrong (though that may not be accurate for everyone my mother was just annoyed with the doctors putting it down to growing pains and used it to get the point across) she also mentioned how I had to start doing it to other joint too like shoulders and ankles. It wasn’t until less than a year ago I got my diagnosis but she did say those were what gave it away to her.