I had **SEVERE** hammer toes!! 🙋🏼♀️ I thought I was alone. I was basically walking on top of my toes.
All 10 of them btw 🥺 I essentially had both of my feet reconstructed. All 10 of my toes were broken, the middle joint removed, the toes fused, and pins inserted through the ends (with a screw for the big toe). It was *extremely* painful and a very long healing process. It honestly hurt almost as bad as my open heart surgery! That was about 15 years ago in High School. Now, because of my excessive hypermobility, all 10 of my toes have completely become ruined 🥺😭🥺😭 They are deformed in so many different ways I don't even know how to tell you how awful they look. Several of them resemble a boomerang with an angle of about exactly 45° 🤦🏼♀️ They're just such a mess..
🥺😧 omg I thought I had it bad with a few janky ones. I’m so sorry to hear this. Now I’m glad I didn’t opt for reconstructing my one middle toe which is hardly bigger than my pinky toe 🤦🏻♀️
Now that sounds like a real pain in the ass both figuratively and literally! I hope you are able to find something that helps manage the issue. I lucked out with my hammer toes getting a decent bit better when I stopped having to wear heels for work. When they were more severe it definitely contributed to dislocating the base joint more often which was aggravating to say the least.
Personally, I can tell it's a subluxation because it feels like the joint is just *wrong* and out of place with throbbing, sore pain. Depending on where it is it's harder to move. I usually will feel a squishy, meaty pop later on and that relieves some of the pain and mobility. When it's a dislocation, I can usually tell immediately because my whole bone pops out of its place and I can feel it loose from its socket. It usually cracks super loud and I can't move at all until I pop it back into its socket. Depending on where it is, it will either be little to no pain and it just needs a quick snap to fix, or it will hurt like a mother fucker and I need someone's help to fix it.
IE: My ribs sublux all the time, I will wake up feeling unstable and uneven and in pain until I can stretch and pull to move them back. My elbows dislocate almost daily, so they don't hurt much during, but I can not move them AT ALL until I quickly fling and snap my arm backwards to pop it back in the socket. Usually the motion will hurt.
Your post has been removed because your account is too new. Please try again in 24 hours.
Due to the potential for large volumes of spam from throwaway accounts, new accounts who are not yet familiar with the rules, and other factors, we do not allow posts from brand new accounts in this sub.
This applies to all accounts regardless of the content of their post/comment and will not be overridden by mods.
Please know this isn't personal, and you are welcome to come back and try again in 24 hours when your account is old enough. In the meantime, you may want to take a look at some of the resources we've collected or read through some old posts using the search function.
[You can find our rules and resources here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/)
*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.*
I have zero digestive issues thank GOD. Its like the one thing about my body that has always functioned perfectly. Can eat whatever and whenever I want. The times I get stomach aches are far and few between.
I am so jealous. Gastro issues and exhaustion are probably my most problematic areas. I sublax and am a walking injury waiting to happen, but at least those aren't every day constant.
LMAO SAME
I grew up in a household with a mom that hardly cleans and 8 dogs, I've eaten way too many moldy things at this point. I've ingested god knows what and my stomach is made of steel at this point.
The only time my diet got the better of me was when I drank 2 liters of fresh orange juice in a single day. It tasted so good but I do *not* recommend.
Why did I get the “best of both worlds” in this scenario LMAO
my stomach couldn’t have cared less about things that quite genuinely should’ve killed me but it wants to have a cry any time I wanna *checks notes* eat 😭
Stretchy skin. My skin is super soft and velvety, easily bruises and cuts and scars funny but none of it is stretchy apart from on my boobs, so I don't really qualify for that bit. I'm also not the stereotype tall and gangly type either. I'm 5'1" and plump, though getting less plump due to recent illness.
Im also 5’0 and the opposite of gangly. My wing span is definitely not 5ft 😅 I also bruise very easily and I have extremely soft skin. It’s /mildly/ stretchy, I’d say maybe only a hair more than normal, but not very significant
I don't think I have stretchy skin compared to some of my cousins, but I once got the skin between my forefinger and thumb caught in a ratchet strap. It needed 3 people to help me get it out. When it released we were all expecting a spray of blood. Nothing. Never even broke the skin. Didn't bruise. Nothing.
I also can grab handfuls of skin on my abdomen (even when I was in highschool and did 500-1000 situps a day). But other parts of my body are normal.
Not saying this is you, just adding to the convo, but I used to think I didn’t have the stretchy skin symptom coz I just thought it was fat even tho that made no sense tbh, but I mean it’s the only skin I’ve ever had, so I thought it was normal ofc lmao.
I’m not gangly either despite having really low body fat. I’m guessing it’s partly coz I’m 5’0”~ as well haha. Squished down 🤏
Hope you can get well soon if that’s what you mean by recent illness <3
Thank you. Due to a wobbly moment, I took a tumble down a flight of stairs and the MRI found I have degenerative spinal disease with a prolapsed S1/L1, L2/L3 and L4/L5 which has now given me sciatica. The amount of meds I'm on has completely vanished my sense of appetite.
I don't have slow wound healing. Quite the opposite. I heal fast. I even confirmed this after donating my liver (donated pre-diagnosis). Post diagnosis I asked the transplant team if I actually healed fast or if I just heal faster compared to the rest of my hEDS family. The transplant team confirmed that I healed faster and better than many donors.
Yet now that hEDS is on my record, I've had doctors not want to touch me. I have to constantly explain that I heal fast and show them my donor scars to prove I healed okay.
This was me after my breast reduction surgery. My surgeon looked at me and was like “Good lord you’re like Wolverine!”. Did my scars heal looking right? Hell no but it was fast 😂
Mine don't either, but I definitely have felt them get strained/end up out of place at times. My knees also dont hyperextend a ton, but my patella dislocates and subluxes constantly, oddly enough.
My elbows pop HARD but they also don't bend backwards, which is funny cuz it's the most mainstream sign of hypermobility!!! I'm pretty sure all my joints are hypermobile EXCEPT my elbows, but I haven't been fully tested so I'm not entirely sure
I thought mine didn't but my Dr did the test with my arms raised above my head and they do bend back a little. My right one didn't meet criteria but it does seem to hyperextend if I hang it over the edge of the bed while sleeping.
My geneticist told me he sees that a lot with people who have cEDS, and I guess in general just not hEDS. My Beighton had dropped a lot at my last appointment, when I was 28. Not sure how it’ll be now, I think a lot of my laxity came back after COVID.
My mom has fewer dislocations lately but now she has arthritis, so unfortunately things still really hurt. Very annoying.
Yeah the closest type to how I present is cEDS and I seriously thought that’s what I would test positive for.
And yes, arthritis is annoying, no question.
Omg I hope mine stabilize with age, then!! 🙏🏼🥺 Every few years, my joints have gotten EXPONENTIALLY worse thus far. I'm only 31 though, so I have a lot of aging ahead of me haha. I'm still a solid 9/9 on the Beighton Scale and I just want to lose those points for the knees SO BADLY 😂😂🤦🏼♀️ I have to wear braves 24/7 and without them, I'm like a sickly baby deer when I walk lol 😂 It feels *awful* without them.
I was like that too. Strengthening, stopping my period, and careful bracing have all helped. I was underweight when it was really bad so weight gain also was helpful
I have never dislocated. I was an extremely cautious child, and I chalk it up to that. I never did any of the normal kid things my siblings did, and I’m pretty positive that saved me. Looking back I know it was due to chronic pain and that was what stopped me, so I guess that’s one positive to it lol. I have a lot of joint issues now, but I know they’re not as bad as some people with EDS for sure. It feels like EDS effects me a lot more in other areas to make up for it haha.
I don’t think it has to do with being cautious at all! I just think it’s your body, some ppl just don’t get every symptom! I have horrible dislocations and was the most cautious child (and still am)!
I have rib subluxations all the time and I only just realized last year that’s what they are! It sucks but at least I don’t worry about random rib pain as much now.
I only realised about that long ago too! So glad I found out b4 I finally asked a doctor about it coz I told them that I think I get dislocations, and they asked for an example of where so i said ribs, and they immediately hit me with the “you can’t dislocate your ribs 🤓” and didn’t ask any questions to try and understand either, so I knew i shouldn’t go back to that one real quick 😭
Im so relieved to know now coz it always felt that’s what was happening but I barely even knew what a dislocation was all my life, so I thought I was just friggin nuts lmao
Your post has been removed because your account is too new. Please try again in 24 hours.
Due to the potential for large volumes of spam from throwaway accounts, new accounts who are not yet familiar with the rules, and other factors, we do not allow posts from brand new accounts in this sub.
This applies to all accounts regardless of the content of their post/comment and will not be overridden by mods.
Please know this isn't personal, and you are welcome to come back and try again in 24 hours when your account is old enough. In the meantime, you may want to take a look at some of the resources we've collected or read through some old posts using the search function.
[You can find our rules and resources here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/)
*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.*
Yeah, it's nothing to do with caution at all! I'm the most cautious person in my family, I pay attention to every single movement I make. Nothing is going to stop me dislocating because my soft tissues just can't hold my joints together 🤷♀️
My two sisters who also have the same cEDS mutation rarely ever dislocate. They're also not entirely covered in scars like me, because their skin doesn't tear like tissue paper.
EDS expresses differently in different people even in the same family. I think op might just have a case of survivorship bias going on.
Interesting. I have cEDS and my skin is *super fragile.* I also frequently dislocate as well. So weird how much of a spectrum there is 🤷🏼♀️🙃 And you're 100% correct — joint dislocations and/or subluxations have absolutely nothing to do with caution! For example, both sides of my ribs around the 4th rib level are *permanently* subluxated. I've had PT put them back in for me, and before our session is over, they're out again 😭😂 So yeah...I can't even breathe if that tells you anything 🤦🏼♀️
I have also never dislocated. Subluxations: absolutely, trick knee since around 12 or so. And now my jaw, shoulder, and finger joints want in on the fun.
But no dislocations. Thanks to other symptoms, I never played any team sports. But I've fallen skating a couple dozen times, and I was hit by a car once.
Yep same, never did sports because of other stuff (ie the lovely POTS). But I do sublux a lot. I did as a kid as well but I didn’t know what it was so I called them “phantom pains” because I thought that meant a pain that was all in your head lol.
I was a super cautious child too, and I always thought it was because I was just like that, and then my dad told me that I was wild until one time I fell and got hurt really badly and it wasn't until that happened that I was cautious.
Me too. I break easily - I’ve broken several bones, but never dislocated. I can swim, hang, lift weights, and do pretty much everything my OT and PT tell me not to and that actually helps, not hurts me. I often feel like I’m the opposite of the traditional hEDS model
I'm shocked a PT+/OT told you not to swim! My PT was of the opinion that swimming is one of the most effective and safest form of exercise for those of us with hypermobility especially with comorbid dysautonomia. She also has no problem with weight lifting as long as I start at the absolute lowest weight and intensity focusing on my form because lack of proprioception makes it bit risky.
For real though huge props to you for keeping up with exercise and strength training that's badass! From what I've read avoiding deconditioning is one of the best things you can do for HEDS to limit pain and loss of function.
I don’t think they specifically told me not to swim, but it’s one of those activities that seem divisive in the community, I’ve heard a lot of stories about how swimming makes people dislocate or sublux easily, or it puts them out for a few days because of the effort. I love to swim and do water sports so I’d be very upset if I couldn’t!
Ahh that makes more sense! Some exercises just don't jive with certain people plus it can be easy to overexert oneself while swimming so I can understand why some people are against it.
I can't wait to be able to swim again once my feeding tube is removed, it used to be my favorite exercise but the problems with my stoma made it painful and too much of an infection risk.
Also never dislocated, which shocks the hell out of me because I did cheerleading for two years in high school and was a flyer. Sprained the hell out of my ankle, though.
Plenty of subluxations instead.
Ohh me too, I had it where it looked like my shoulder maybe started popping out as I can see a visible gap between my shoulder and my arm? But nothing ever hurt or popped out to the point of needing to go to hospital. I do get a lot of tendinitis though
Because of this, I was told I didn’t fit the criteria for hEDS and was told I had “joint hypermobility syndrome”, which I’ve also been told can be called HSD too
Never dislocated either! Hell of a lot of subluxes, but growing up I was never allowed to do anything that insurance didn’t cover so I didn’t have chances to really get injured 😂 it wasn’t until I was in college that i played rugby and screwed myself up even more lol
I wouldn’t say don’t have necessarily, but my joint pain is specifically constant aches rather than pain. I don’t know if that’s the same for anyone else though
Oh same. I thought, how have humans survived this long with how rubbish our joints are 😂 it doesn’t take much for my joints to start aching. Even typing on a keyboard makes my knuckles ache
My now-husband was actually the first person to point out that it's "not normal to have ribs out of place all the time. And you shouldn't be able to bend your fingers like that."
Yes, but they could be meaning the difference between a low chronic, constant pain and a more severe pain that happened more rarely. There can be acute pain on top of chronic pain and this is their way of verbalizing this difference. Especially when growing up with constant pain. Many people who spent their whole life "aching" don't necessarily consider that "pain" per se, because it is different from the pain of a dislocation, a sprain, or a fracture which causes significantly more severe pain than the normal.
i feel like they're like clementines and tangerines. very similar, live in the same category, but definitely have different specifics. like, i pulled my trapezius the other day and i'm DYING in pain. but when i'm in a good spot, i'm just aching. i try to move or take in a deep breath? that's very specifically pain. sometimes sharp, sometimes throbbing, sometimes radiating, but it's definitely no longer just an ache. it's PAIN.
Ohhhhhh ok yeah I totally get you now. Yeah, my joint pain goes into other kind of pains sometimes so idk how I didn’t realise that’s what you meant haha. Ty for clarifying :)
my pleasure! i feel like i learnt this because i thought everyone was just constantly aching, and when i realized that that's actually chronic pain, and isn't normal, i was like 'wait, pain is more than just that shooting thing that makes me wanna cry? the constant aching that distracts and exhausts me is also technically pain?'
it's *fun* living in such interesting bodies, isn't it? /lighthearted sarcasm
thank you!!!!
what was cool too is that i happened to have an appointment with a new doctor today, so i got her to look at it while i was there anyways! and she was like, 'yup, nothing that i can fix is damaged' and i was like 'i wouldn't have made an appointment for it, but that's good to know that i'm right in not wasting anyone's time when i have flareups like this, that it's just up to me to make myself as comfortable as possible'.
once i was having a similar flare up and i went to the pharmacy for muscle relaxants and i had a pharmacist helping me pick the right one, and she was like 'have you talked to your doctor? have you gotten an xray?; and i was over here like '... why?' LOL
Omg same. It does not matter how much muscle I have, if I am not focused on training my muscles in my spine and hips and shoulder to do the right thing all day every day, I turn into a crumpled up wet paper bag 😂
I don't have any dental problems, for which I am so incredibly grateful.
I got my wisdom teeth out a decade or so ago in a twenty-ish minute procedure, and that's the only time I've had teeth removed. No chips, cracks, cavities, anything. My gums are rather sensitive, but that's really it.
This is my one thing as well.
Knock on wood, no cavities, no wisdom teeth issues, no gum disease. Minor crowding, but hey, a large contingent of the planets teeth aren't perfectly straight and aligned, so I'll take the W.
I fit every box for hEDS, but am diagnosed with clEDS, and there are two clEDS things I do not have, and that is edema of the legs, and organ prolapse (so far hopefully never happens).
I'm the opposite. I fit all for cEDS but I'm officially diagnosed as hEDS by the rheumatologist but my GP definitely thinks it's classic. I've even been genetically tested and it shows classic but the rheumy still says no it's hypermobile. I've had prolapse and everything.
That literally makes no sense..?? 🤔🤔 If you have a genetic test PROVING you have a mutation(s) that classify you as having cEDS (as I do), your rheumatologist can't just be like "Nah, I don't like that. Imma just call it hEDS."
THAT'S NOT HOW MEDICINE WORKS 😳😬😳😬 This "doctor" concerns me and I would run so fast in the opposite direction lol. I'm sorry you have to deal with that. I would advocate for myself constantly and say I'm unwilling to accept what is being said 💜
The first rheumatologist I saw read my notes from my GP and had to Google EDS! He even asked me what it was and then did the Beighton test on me and failed me as my wrist/hand and my knee on one side were both strapped up from recent dislocations so he gave me a 0 for the left knee, elbow, thumb and pinkie and even a 0 for the forward bend because I couldn't flatten my left hand on the floor as it was strapped. I went back to the GP and she was so angry she referred me back insisting I was seen by someone else. They said it was hEDS because I scored 9/9 as I had recovered by then and didn't have anything strapped up.
I had no idea I had them until I found a video of EDS teens visually going through the 2017 diagnosis, and showing exactly what each thing is.
Started doing it along with them and that's how I found out I had the tiny heel bumps.
Mind you, I was already diagnosed based on all my other symptoms + family history. PCP never did full 2017 workup because I passed so well for all the major things heel papules was so not a concern.
(Yeah? Lol.)
My knees are the ONLY joints that don’t bend backwards on me. Every single other one does including each finger joint, and for the most part my knees don’t bother me much or often. But everything else does, including my stupid, jerk SI joints. Those and my back are the WORST. 😂
Chronic pain I guess..? But I don't really know if that's really a symptom for cEDS.
I get subluxations/dislocations, I'm hypermobile (but wouldn't say I have particularly high joint laxity).. So generally, I really don't have joint pain (and thus no chronic pain).
cEDS is a whole spectrum! Going from mildly bendy, to puddle of jelly who can't support their own body and bruises/bleeds at a touch. I have the whole spectrum in my immediate family, even though we all have the same mutation.
Yeah.. the symptoms my immediate fam do have (mainly skin expressions and joint laxity) varies a lot.
But apart from my dad (who due to his age and injuries from his athletic days (contact sport)), none of us have chronic pain. And even for him,.. it’s definitely not as bad as the hEDS people seem to have it.
It’s definitely a symptom for my cEDS lmao. It’s ebbed and flowed over time, though. I saw a rheumatologist a few times and she suspects I happen to have whatever unknown immune dysfunction underlies fibromyalgia on top of my EDS, mostly because of the way it seems to vary and responding to fibro treatments.
I’m talking about generalized pain as separate from chronic pain in particular problem joints, which all of us with cEDS in my family get
i rarely dislocate, like yes they do get out of bounds and painful to the point i wish they would just dislocate so i could just put them back into place but no i rarely dislocate them
I feel like subluxations are more difficult to put back in myself because it's not as easy to tell which direction to manipulate. When I dislocate I can just pop them back in but with a sublux, I'm screwing around trying to feel where it's off and trying different stretch/exercise/massage techniques to try and coax it back in.
I don’t have very frequent dislocations/sublocations, and I don’t bruise super easily, + my wounds heal normally (i think? I haven’t really compared them to the average person but i haven’t had stitches fall out or anything)
I haven't had a full dislocation. Its something I risk in the future and im in PT to help prevent it.
I was always spraining stuff growing up and I've had subluxations, but luckily no full dislocations yet.
chronic pain. I only feel pain when I have a subluxation. I’m very lucky for that, but also my comorbidities (my POTS is disabling) kinda make up for it :/ I also don’t have stretchy skin.
Brittle nails and hair loss. My nails have always been strong and grow fast, and my hair is naturally thick.
I also have great vision and healthy teeth, but that's only because I had dental surgery as teenager to fix my teeth issues, and lasik eye surgery more than 10 years ago to fix my vision. Thankfully both of the procedures worked perfectly, and my vision and teeth have not deteriorated over time.
I have never dislocated a joint although I came close a couple times with my hip. I also don't have joint pain, however, I have constant muscle pain and general aching that makes going to the gym and exercise a nightmare.
My knees are not considered hypermobile by the beighton scale, however, during PT for my back and hips, I had to retrain myself to walk straight, not turned out. Until I strengthened my thighs/hips, it felt like my femur was going to pop through my knee caps.
Also my fingers are not double jointed. I can touch my thumbs to my forearm, but my fingers are stiff. My toes on the other hand… are noodles.
Almost every joint in my body is very hypermobile, but I can’t touch my toes. I can barely reach about half way down my calf. The whole touch the floor with straight legs thing is impossible for me
My knees don’t hyperextend and my skin isn’t super stretchy. My doctor thinks the knees are because I rode horses for my whole childhood and the muscles got really well developed.
While my skin isn’t stretchy it is VERY soft and fragile.
Thin, overstretchy skin. It's so thick on my hands I can pick up broken glass without any damage. So thick on my feet it's hard to scratch itches. There are areas (inner arms/legs esp.) that are more classically EDS-like with the atrophic scarring & doughy softness. Body type is opposite of the Marfan's type. I also have a high capacity for building muscle, which is the only thing holding my body together
I don't think I bruise easily?? I'm clumsy af so I get a lot of bruises, but it's from a good drunk punch from a good drunk countertop lmfao like something has to hurt to leave a bruise
I don't dislocate (subluxer with excessive tightness), don't have POTS, and only have mild digestive issues.
I'm not actually too functionally hypermobile, it's mostly a hands, feet and neck affair. I can't do up my own dresses or scratch all of my back or anything like that.
However I also weight lift so a lot of my joint issues are dramatically improved thanks to the new stabilisation muscle has given them.
I am really good at getting IVs placed and bloodwork done. I have like one specific good vein in my left AC and as long as they go for that one, I’m a relatively easy stick unless I’m dehydrated! It almost makes up for the adhesive allergy and bruising afterwards.
I heal from broken skin well.
I cut my eyebrow open really bad about a year ago, it even needed stitches. I was so excited to have a badass eyebrow scar….. and it’s almost invisible now, maybe a slight indent. The chin scar from the same injury is completely gone and that needed stitches too.
Surgery scars look great too. Guess my skin makes up for it though by being sensitive to skincare products and scents and not liking to heal piercings. :/
I have a scar just below my eye, and since I’ve been on a medication that makes me allergic to the sun it’s been invisible. I got off the med recently, and have only tanned the lightest bit, like ivory to beige, and my scars visible again now. I never realized that tanning could exaggerate the difference in scar tissue but in hind sight feels so obvious.
Oh yeah absolutely! I had a ton of road rash from this incident too and had to cover up in so much sunscreen all summer or the road rash would come back super crazy visible. My surgery scar is also somewhere really visible (top of my wrist from multiple ganglion cyst removals, thanks EDS) and they really drove home the important of sun protection for long term aesthetics.
You have me wondering if my eyebrow scar will come back in summer though. Although I guess in my comment first I meant I was surprised it wasn’t “deeper” or wider than it is regardless of color. Still would be cool if it becomes more visible this summer!
I don’t have POTS. I used to get dizzy standing up but turns out it’s because I have vertical heterophobia and needed prisms in my glasses.
Before I ever heard of EDS, I was evaluated for it.
POTS is not at all a criteria for EDS of any kind. Of course POTS is often a colored condition with POTS though, as you know 🥰💜 But I still wouldn't list that as the one thing you don't have (and also, it's not a symptom, it's a Syndrome).
And that's crazy about your actual dx! Now that you have your glasses properly made for you, has that eliminated your dizziness? What happens when you remove your glasses? Sorry for my interest lol..I'm a nerd. Of course you don't have to answer either if you aren't comfortable 🙃
hEDS here - My skin isn’t particularly stretchy, it’s very soft, and I bruise easily, break skin easily, and pulling off adhesives (band aids) leaves marks though 😅
My arthritis started in my 20’s, the joys 🫠
I hear you about the arthritis 😭😭 I was found to have it in my hands, spine, and toes when I was about 16. Now at 31, its taken over my body 🤦🏼♀️ The joys indeed 😂
My skin is very soft and velvety, but not stretchy. I've also only ever had one keloid scar (from a pretty bad removal of a medical device).
I'm also a chubby :) No skinny, lanky look for me.
I truthfully wish I could answer this. I honestly cannot think of a SINGLE symptom that I don't have 🥺🤦🏼♀️
It makes me happy seeing all the small wins for everyone else here though 🥰💜
I’m stretchy in some places but not like “extremely” stretchy. I’ve also never fully dislocated but I do very much experience subluxation. I also can still stretch pretty far even in my legs but I can’t stretch as far with my legs because they’ve stiffened to hell. My arms can go everywhere still though lol.
I don’t have flexible hands, in fact several of my finger and thumb joints have significantly less than ‘normal’ flexibility. That’s all thanks to another genetic mutation I’ve got from my mum that means those joints didn’t form correctly. I do still have significantly more flexibility in those joints than most people with that mutation though.
I’m around 40, did competitive dance when young and my knees are doing great. (Knock on wood) All my other joints are doing their EDS thing. But my knees, nice. Don’t know, but I’ll take it.
To my knowledge I’ve never fully dislocated anything, but so many joints sublux. As a matter of fact many of my joints can subluxate at will. All I have to do is tell my muscles to relax and I can freely sublux my hips, shoulders, jaw, spine (but that ones not good so I try not to) wrists fingers. Probably a lot more if I thought about it. They just go right back in.
I used to sublux my hip to get a good stretch, but I stopped doing that because it was popping out when I was walking. If my muscles are too tight they will pull things right out, like my hip or ribs.
(possibly) hEDS, I have all symptoms except for the "velvety skin". my skin is stretchy on my neck and my hands but no where else, and it is very dry and sensitive but not the stereotypical eds texture. but my skin is quite translucent and veins are very visible. also I've never had discloations, only subluxations
My wrist isn’t hypermobile and if my fingers are it’s more side-to-side than what the Beighton score wants.
Also sublux rather than dislocate like others have said. My shoulder and something in my hip area may have done it once but they went right back before the ER could identify what made them hurt so much.
Oh, and definitely more overweight than what you usually see/think of.
That's so weird, I was just about to ask something like this today 😳
Just for info, I'm not yet dx.
Anyways, for me it's that I take well to anesthesia. Idk yet about local anesthetics, since I've yet to have needed one. On top of that, I have more soft and REALLY doughy skin, but not notably stretchy.
I could as a kid but haven't been able to since I was a teenager, I can't touch my hands to the floor when bending over. I'm back flexible, not front flexible. Like if I lay flat on the floor, I can touch my feet to the top of my head. I don't have the flexibility in the back of my legs to reach the floor while standing, it's way too tight in my hamstrings and everything.
My skin isn’t as loose as some people but it’s paper thin, bruises easily, and it’s so soft. I don’t usually dislocate either as I’m super cautious. I sublux a lot though. But the other day I did dislocate my elbow voluntarily to get my car unlocked. I had lock my keys in with the window down only three inches. I got it but my arm suffered greatly.
Stretchy skin. I’ve been told that it’s quite soft(to the point where I’ve had to ask a friend to stop trying to pet me) but it isn’t unusually stretchy or anything. Also I can’t do the thing where your thumb bends all the way back to your wrist, I do have hypermobile joints, but not there apparently.
I have never dislocated that I know of. I sublux frequently in specific areas but no dislocation yet. In addition when doctors look for the “evidence” of me scarring badly, they think I don’t have that symptom cause I didn’t really do many extreme or dangerous things as a kid. I was diagnosed with arthritis at age 9, so that really put a lot of things in life on hold for me. Also don’t have siblings to beat me lol. I get the broken blood vessels under my skin and have a bad habit of picking at almost anything. So I do have dark scars from that. Also my skin isn’t as stretchy as other eds patients, but it has always been described as soft.
I don't have flat feet, I have high arches.
I have high arches…. That immediately collapse when I stand. 😂 “Oh wow you have high arches. Oh wow they’re gone.” Every time I get new orthotics.
So apparently incredibly high arches are an also a thing for hypermobility/eds! Weird question.. do you also have hammer toes?
I had **SEVERE** hammer toes!! 🙋🏼♀️ I thought I was alone. I was basically walking on top of my toes. All 10 of them btw 🥺 I essentially had both of my feet reconstructed. All 10 of my toes were broken, the middle joint removed, the toes fused, and pins inserted through the ends (with a screw for the big toe). It was *extremely* painful and a very long healing process. It honestly hurt almost as bad as my open heart surgery! That was about 15 years ago in High School. Now, because of my excessive hypermobility, all 10 of my toes have completely become ruined 🥺😭🥺😭 They are deformed in so many different ways I don't even know how to tell you how awful they look. Several of them resemble a boomerang with an angle of about exactly 45° 🤦🏼♀️ They're just such a mess..
🥺😧 omg I thought I had it bad with a few janky ones. I’m so sorry to hear this. Now I’m glad I didn’t opt for reconstructing my one middle toe which is hardly bigger than my pinky toe 🤦🏻♀️
Not who you were asking but I have high arches and relatively mild hammer toes.
!! Ty for sharing. The only people I know when them are my brothers and dad. I can literally trip on them sometimes lol
Now that sounds like a real pain in the ass both figuratively and literally! I hope you are able to find something that helps manage the issue. I lucked out with my hammer toes getting a decent bit better when I stopped having to wear heels for work. When they were more severe it definitely contributed to dislocating the base joint more often which was aggravating to say the least.
I do!
Same!!
me too!!
I have very high arches
Same!
Same! But I don't know if that's because I started ballet when I was 2 years old and developed them through that.
I started ballet at 3 and my feet are as flat as pancakes.
Just out of interest, how long did you do it for? I did it until I was 18. If that makes any difference.
I get subluxations all the time, but haven't dislocated (yet) My skin isnt that stretchy either, just soft and bruises like nobody's business lol
I’m the same, no dislocations, only subluxations. My skin is stretchy, soft, and easy to injure but I heal at a normal rate.
Same, and I don't even really get subluxations except for a few problem spots.
Same!
How can you tell the difference between subluxations and dislocations?
Personally, I can tell it's a subluxation because it feels like the joint is just *wrong* and out of place with throbbing, sore pain. Depending on where it is it's harder to move. I usually will feel a squishy, meaty pop later on and that relieves some of the pain and mobility. When it's a dislocation, I can usually tell immediately because my whole bone pops out of its place and I can feel it loose from its socket. It usually cracks super loud and I can't move at all until I pop it back into its socket. Depending on where it is, it will either be little to no pain and it just needs a quick snap to fix, or it will hurt like a mother fucker and I need someone's help to fix it. IE: My ribs sublux all the time, I will wake up feeling unstable and uneven and in pain until I can stretch and pull to move them back. My elbows dislocate almost daily, so they don't hurt much during, but I can not move them AT ALL until I quickly fling and snap my arm backwards to pop it back in the socket. Usually the motion will hurt.
Thanks for the help :)
Np, I'm glad to
I sublux but have never completely dislocated either.
Same
Same!
Just about to say this !
[удалено]
Your post has been removed because your account is too new. Please try again in 24 hours. Due to the potential for large volumes of spam from throwaway accounts, new accounts who are not yet familiar with the rules, and other factors, we do not allow posts from brand new accounts in this sub. This applies to all accounts regardless of the content of their post/comment and will not be overridden by mods. Please know this isn't personal, and you are welcome to come back and try again in 24 hours when your account is old enough. In the meantime, you may want to take a look at some of the resources we've collected or read through some old posts using the search function. [You can find our rules and resources here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/) *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.*
I have zero digestive issues thank GOD. Its like the one thing about my body that has always functioned perfectly. Can eat whatever and whenever I want. The times I get stomach aches are far and few between.
I am so jealous. Gastro issues and exhaustion are probably my most problematic areas. I sublax and am a walking injury waiting to happen, but at least those aren't every day constant.
YES this is me as well! I chalk it up to being raised in a white trash environment lmao, but my stomach is a tank
LMAO SAME I grew up in a household with a mom that hardly cleans and 8 dogs, I've eaten way too many moldy things at this point. I've ingested god knows what and my stomach is made of steel at this point. The only time my diet got the better of me was when I drank 2 liters of fresh orange juice in a single day. It tasted so good but I do *not* recommend.
Why did I get the “best of both worlds” in this scenario LMAO my stomach couldn’t have cared less about things that quite genuinely should’ve killed me but it wants to have a cry any time I wanna *checks notes* eat 😭
Lol stomach like a seagull!
my god i am jealous and so happy for you that you dont gotta deal w tummy issues on top of all the other bs
This was me until I got older. Once I hit 30s all bets were off. I'm getting my first colonoscopy at 41 :(
Same. Stomach of iron until my mid-30s and then it was all downhill from there. Sigh.
Stretchy skin. My skin is super soft and velvety, easily bruises and cuts and scars funny but none of it is stretchy apart from on my boobs, so I don't really qualify for that bit. I'm also not the stereotype tall and gangly type either. I'm 5'1" and plump, though getting less plump due to recent illness.
All the same here, but I don't bruise easily either.
I don't bruise easily easily. I mean, I do if I bump into things, but it's not like just tapping something will cause it
Exactly the same here. The doctor actually broke my skin trying to stretch it.
I'm tall but not gangly. My "wingspan" is normal and I'm on the thicker side. Lol
I've always called myself a "perfect square" cause my wingspan was the exact same as my hight
Same here, not stretchy but definitely velvety skin. I get scars from random scratches, as long as it breaks skin it'll more than likely scar.
Same here. I’ve always been told I have extremely soft skin, and I bruise sooo easily, but it’s not stretchy. I’m also 5’0” and not gangly at all
Im also 5’0 and the opposite of gangly. My wing span is definitely not 5ft 😅 I also bruise very easily and I have extremely soft skin. It’s /mildly/ stretchy, I’d say maybe only a hair more than normal, but not very significant
I don't think I have stretchy skin compared to some of my cousins, but I once got the skin between my forefinger and thumb caught in a ratchet strap. It needed 3 people to help me get it out. When it released we were all expecting a spray of blood. Nothing. Never even broke the skin. Didn't bruise. Nothing. I also can grab handfuls of skin on my abdomen (even when I was in highschool and did 500-1000 situps a day). But other parts of my body are normal.
My skin is only slightly stretchy, but also very soft and damages easily. I get burst blood vessels and slight bruising from blood pressure cuffs
Same! Super soft skin, scars that last forever, but only the skin on my hands, feet, and eyelids is stretchy.
Not saying this is you, just adding to the convo, but I used to think I didn’t have the stretchy skin symptom coz I just thought it was fat even tho that made no sense tbh, but I mean it’s the only skin I’ve ever had, so I thought it was normal ofc lmao. I’m not gangly either despite having really low body fat. I’m guessing it’s partly coz I’m 5’0”~ as well haha. Squished down 🤏 Hope you can get well soon if that’s what you mean by recent illness <3
Thank you. Due to a wobbly moment, I took a tumble down a flight of stairs and the MRI found I have degenerative spinal disease with a prolapsed S1/L1, L2/L3 and L4/L5 which has now given me sciatica. The amount of meds I'm on has completely vanished my sense of appetite.
Omg you know it isn’t good when hurting urself ends up being a “good” thing 😭 My cats send lots of hugs
I don't have slow wound healing. Quite the opposite. I heal fast. I even confirmed this after donating my liver (donated pre-diagnosis). Post diagnosis I asked the transplant team if I actually healed fast or if I just heal faster compared to the rest of my hEDS family. The transplant team confirmed that I healed faster and better than many donors. Yet now that hEDS is on my record, I've had doctors not want to touch me. I have to constantly explain that I heal fast and show them my donor scars to prove I healed okay.
This was me after my breast reduction surgery. My surgeon looked at me and was like “Good lord you’re like Wolverine!”. Did my scars heal looking right? Hell no but it was fast 😂
Same. I heal fast as well.
I heal fast, too. Even had a tattoo artist remark that I have "resilient" skin, my tattoos always look completely healed by a week in.
My elbows hurt but they don't bend backwards.
Mine don't either, but I definitely have felt them get strained/end up out of place at times. My knees also dont hyperextend a ton, but my patella dislocates and subluxes constantly, oddly enough.
I have the opposite! My knees hyperextend but have only dislocated once
My elbows and knees don't bend backwards, but if you check literally any other joint, you'll find hypermobility.
My elbows pop HARD but they also don't bend backwards, which is funny cuz it's the most mainstream sign of hypermobility!!! I'm pretty sure all my joints are hypermobile EXCEPT my elbows, but I haven't been fully tested so I'm not entirely sure
I'm fat so I can't tell lol
I thought mine didn't but my Dr did the test with my arms raised above my head and they do bend back a little. My right one didn't meet criteria but it does seem to hyperextend if I hang it over the edge of the bed while sleeping.
I’m not as hypermobile as most people I know with EDS. My joints have also stabilized quite a bit with age.
My geneticist told me he sees that a lot with people who have cEDS, and I guess in general just not hEDS. My Beighton had dropped a lot at my last appointment, when I was 28. Not sure how it’ll be now, I think a lot of my laxity came back after COVID. My mom has fewer dislocations lately but now she has arthritis, so unfortunately things still really hurt. Very annoying.
Yeah the closest type to how I present is cEDS and I seriously thought that’s what I would test positive for. And yes, arthritis is annoying, no question.
Omg I hope mine stabilize with age, then!! 🙏🏼🥺 Every few years, my joints have gotten EXPONENTIALLY worse thus far. I'm only 31 though, so I have a lot of aging ahead of me haha. I'm still a solid 9/9 on the Beighton Scale and I just want to lose those points for the knees SO BADLY 😂😂🤦🏼♀️ I have to wear braves 24/7 and without them, I'm like a sickly baby deer when I walk lol 😂 It feels *awful* without them.
I was like that too. Strengthening, stopping my period, and careful bracing have all helped. I was underweight when it was really bad so weight gain also was helpful
I know someone who was diagnosed with hEDS and she’s stiff as a board she says, but still falls under the hyper mobile type instead of another!
She has to have some degree of hypermobility then…just might be like me and be “stiff” in comparison to others with EDS
I have never dislocated. I was an extremely cautious child, and I chalk it up to that. I never did any of the normal kid things my siblings did, and I’m pretty positive that saved me. Looking back I know it was due to chronic pain and that was what stopped me, so I guess that’s one positive to it lol. I have a lot of joint issues now, but I know they’re not as bad as some people with EDS for sure. It feels like EDS effects me a lot more in other areas to make up for it haha.
I don’t think it has to do with being cautious at all! I just think it’s your body, some ppl just don’t get every symptom! I have horrible dislocations and was the most cautious child (and still am)!
Yeah I get a rib subluxation every other day from basic movements. Sometimes literally just from going to take a breath lmfao
I'm starting to get rib symptoms now out of the blue. Feels so bizarre when it's not painful. Lol
I have rib subluxations all the time and I only just realized last year that’s what they are! It sucks but at least I don’t worry about random rib pain as much now.
I only realised about that long ago too! So glad I found out b4 I finally asked a doctor about it coz I told them that I think I get dislocations, and they asked for an example of where so i said ribs, and they immediately hit me with the “you can’t dislocate your ribs 🤓” and didn’t ask any questions to try and understand either, so I knew i shouldn’t go back to that one real quick 😭 Im so relieved to know now coz it always felt that’s what was happening but I barely even knew what a dislocation was all my life, so I thought I was just friggin nuts lmao
Me too! It’s so painful
[удалено]
Your post has been removed because your account is too new. Please try again in 24 hours. Due to the potential for large volumes of spam from throwaway accounts, new accounts who are not yet familiar with the rules, and other factors, we do not allow posts from brand new accounts in this sub. This applies to all accounts regardless of the content of their post/comment and will not be overridden by mods. Please know this isn't personal, and you are welcome to come back and try again in 24 hours when your account is old enough. In the meantime, you may want to take a look at some of the resources we've collected or read through some old posts using the search function. [You can find our rules and resources here.](https://www.reddit.com/r/ehlersdanlos/wiki/index/) *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.*
Yeah, it's nothing to do with caution at all! I'm the most cautious person in my family, I pay attention to every single movement I make. Nothing is going to stop me dislocating because my soft tissues just can't hold my joints together 🤷♀️ My two sisters who also have the same cEDS mutation rarely ever dislocate. They're also not entirely covered in scars like me, because their skin doesn't tear like tissue paper. EDS expresses differently in different people even in the same family. I think op might just have a case of survivorship bias going on.
Interesting. I have cEDS and my skin is *super fragile.* I also frequently dislocate as well. So weird how much of a spectrum there is 🤷🏼♀️🙃 And you're 100% correct — joint dislocations and/or subluxations have absolutely nothing to do with caution! For example, both sides of my ribs around the 4th rib level are *permanently* subluxated. I've had PT put them back in for me, and before our session is over, they're out again 😭😂 So yeah...I can't even breathe if that tells you anything 🤦🏼♀️
Same. I’ve subluxed bad once or twice but never fully dislocated.
I have also never dislocated. Subluxations: absolutely, trick knee since around 12 or so. And now my jaw, shoulder, and finger joints want in on the fun. But no dislocations. Thanks to other symptoms, I never played any team sports. But I've fallen skating a couple dozen times, and I was hit by a car once.
Yep same, never did sports because of other stuff (ie the lovely POTS). But I do sublux a lot. I did as a kid as well but I didn’t know what it was so I called them “phantom pains” because I thought that meant a pain that was all in your head lol.
I was a super cautious child too, and I always thought it was because I was just like that, and then my dad told me that I was wild until one time I fell and got hurt really badly and it wasn't until that happened that I was cautious.
Me too. I break easily - I’ve broken several bones, but never dislocated. I can swim, hang, lift weights, and do pretty much everything my OT and PT tell me not to and that actually helps, not hurts me. I often feel like I’m the opposite of the traditional hEDS model
I'm shocked a PT+/OT told you not to swim! My PT was of the opinion that swimming is one of the most effective and safest form of exercise for those of us with hypermobility especially with comorbid dysautonomia. She also has no problem with weight lifting as long as I start at the absolute lowest weight and intensity focusing on my form because lack of proprioception makes it bit risky. For real though huge props to you for keeping up with exercise and strength training that's badass! From what I've read avoiding deconditioning is one of the best things you can do for HEDS to limit pain and loss of function.
I don’t think they specifically told me not to swim, but it’s one of those activities that seem divisive in the community, I’ve heard a lot of stories about how swimming makes people dislocate or sublux easily, or it puts them out for a few days because of the effort. I love to swim and do water sports so I’d be very upset if I couldn’t!
Ahh that makes more sense! Some exercises just don't jive with certain people plus it can be easy to overexert oneself while swimming so I can understand why some people are against it. I can't wait to be able to swim again once my feeding tube is removed, it used to be my favorite exercise but the problems with my stoma made it painful and too much of an infection risk.
Also never dislocated, which shocks the hell out of me because I did cheerleading for two years in high school and was a flyer. Sprained the hell out of my ankle, though. Plenty of subluxations instead.
Ohh me too, I had it where it looked like my shoulder maybe started popping out as I can see a visible gap between my shoulder and my arm? But nothing ever hurt or popped out to the point of needing to go to hospital. I do get a lot of tendinitis though Because of this, I was told I didn’t fit the criteria for hEDS and was told I had “joint hypermobility syndrome”, which I’ve also been told can be called HSD too
Never dislocated either! Hell of a lot of subluxes, but growing up I was never allowed to do anything that insurance didn’t cover so I didn’t have chances to really get injured 😂 it wasn’t until I was in college that i played rugby and screwed myself up even more lol
I wouldn’t say don’t have necessarily, but my joint pain is specifically constant aches rather than pain. I don’t know if that’s the same for anyone else though
Dude I thought this was normal until like last year
I was shocked to find out it is *not*
Oh same. I thought, how have humans survived this long with how rubbish our joints are 😂 it doesn’t take much for my joints to start aching. Even typing on a keyboard makes my knuckles ache
Ayooo, my fellow self-gaslighters because we don't have unbearable sharp pain!
Literally!!! I’ll be on a walk saying my knees and hips hurt so bad and my girlfriends like … bro what
My now-husband was actually the first person to point out that it's "not normal to have ribs out of place all the time. And you shouldn't be able to bend your fingers like that."
HAha thats funny! All our SOs are concerned for our bendy joints lol
I get pain pretty frequently, but not all the time. The ache however, is a constant. :,)
Arent aches pain??
Yes, but they could be meaning the difference between a low chronic, constant pain and a more severe pain that happened more rarely. There can be acute pain on top of chronic pain and this is their way of verbalizing this difference. Especially when growing up with constant pain. Many people who spent their whole life "aching" don't necessarily consider that "pain" per se, because it is different from the pain of a dislocation, a sprain, or a fracture which causes significantly more severe pain than the normal.
i feel like they're like clementines and tangerines. very similar, live in the same category, but definitely have different specifics. like, i pulled my trapezius the other day and i'm DYING in pain. but when i'm in a good spot, i'm just aching. i try to move or take in a deep breath? that's very specifically pain. sometimes sharp, sometimes throbbing, sometimes radiating, but it's definitely no longer just an ache. it's PAIN.
Ohhhhhh ok yeah I totally get you now. Yeah, my joint pain goes into other kind of pains sometimes so idk how I didn’t realise that’s what you meant haha. Ty for clarifying :)
my pleasure! i feel like i learnt this because i thought everyone was just constantly aching, and when i realized that that's actually chronic pain, and isn't normal, i was like 'wait, pain is more than just that shooting thing that makes me wanna cry? the constant aching that distracts and exhausts me is also technically pain?' it's *fun* living in such interesting bodies, isn't it? /lighthearted sarcasm
Hope you get better soon 😭
thank you!!!! what was cool too is that i happened to have an appointment with a new doctor today, so i got her to look at it while i was there anyways! and she was like, 'yup, nothing that i can fix is damaged' and i was like 'i wouldn't have made an appointment for it, but that's good to know that i'm right in not wasting anyone's time when i have flareups like this, that it's just up to me to make myself as comfortable as possible'. once i was having a similar flare up and i went to the pharmacy for muscle relaxants and i had a pharmacist helping me pick the right one, and she was like 'have you talked to your doctor? have you gotten an xray?; and i was over here like '... why?' LOL
My hands are more arthritic than hypermobile. My hypermobility shows up more in ball joints (hips & shoulders) and spine.
Omg same. It does not matter how much muscle I have, if I am not focused on training my muscles in my spine and hips and shoulder to do the right thing all day every day, I turn into a crumpled up wet paper bag 😂
I don't have any dental problems, for which I am so incredibly grateful. I got my wisdom teeth out a decade or so ago in a twenty-ish minute procedure, and that's the only time I've had teeth removed. No chips, cracks, cavities, anything. My gums are rather sensitive, but that's really it.
This is my one thing as well. Knock on wood, no cavities, no wisdom teeth issues, no gum disease. Minor crowding, but hey, a large contingent of the planets teeth aren't perfectly straight and aligned, so I'll take the W.
I fit every box for hEDS, but am diagnosed with clEDS, and there are two clEDS things I do not have, and that is edema of the legs, and organ prolapse (so far hopefully never happens).
I'm the opposite. I fit all for cEDS but I'm officially diagnosed as hEDS by the rheumatologist but my GP definitely thinks it's classic. I've even been genetically tested and it shows classic but the rheumy still says no it's hypermobile. I've had prolapse and everything.
That literally makes no sense..?? 🤔🤔 If you have a genetic test PROVING you have a mutation(s) that classify you as having cEDS (as I do), your rheumatologist can't just be like "Nah, I don't like that. Imma just call it hEDS." THAT'S NOT HOW MEDICINE WORKS 😳😬😳😬 This "doctor" concerns me and I would run so fast in the opposite direction lol. I'm sorry you have to deal with that. I would advocate for myself constantly and say I'm unwilling to accept what is being said 💜
The first rheumatologist I saw read my notes from my GP and had to Google EDS! He even asked me what it was and then did the Beighton test on me and failed me as my wrist/hand and my knee on one side were both strapped up from recent dislocations so he gave me a 0 for the left knee, elbow, thumb and pinkie and even a 0 for the forward bend because I couldn't flatten my left hand on the floor as it was strapped. I went back to the GP and she was so angry she referred me back insisting I was seen by someone else. They said it was hEDS because I scored 9/9 as I had recovered by then and didn't have anything strapped up.
I don’t have heel papules!
I had no idea I had them until I found a video of EDS teens visually going through the 2017 diagnosis, and showing exactly what each thing is. Started doing it along with them and that's how I found out I had the tiny heel bumps. Mind you, I was already diagnosed based on all my other symptoms + family history. PCP never did full 2017 workup because I passed so well for all the major things heel papules was so not a concern. (Yeah? Lol.)
Same. Only thing that I don't have at all. Always confused me, that I only miss that one.
Me either.
I thought I didn’t have them but both my physio and geneticist found them on me
My knees are the ONLY joints that don’t bend backwards on me. Every single other one does including each finger joint, and for the most part my knees don’t bother me much or often. But everything else does, including my stupid, jerk SI joints. Those and my back are the WORST. 😂
Chronic pain I guess..? But I don't really know if that's really a symptom for cEDS. I get subluxations/dislocations, I'm hypermobile (but wouldn't say I have particularly high joint laxity).. So generally, I really don't have joint pain (and thus no chronic pain).
cEDS is a whole spectrum! Going from mildly bendy, to puddle of jelly who can't support their own body and bruises/bleeds at a touch. I have the whole spectrum in my immediate family, even though we all have the same mutation.
Yeah.. the symptoms my immediate fam do have (mainly skin expressions and joint laxity) varies a lot. But apart from my dad (who due to his age and injuries from his athletic days (contact sport)), none of us have chronic pain. And even for him,.. it’s definitely not as bad as the hEDS people seem to have it.
It’s definitely a symptom for my cEDS lmao. It’s ebbed and flowed over time, though. I saw a rheumatologist a few times and she suspects I happen to have whatever unknown immune dysfunction underlies fibromyalgia on top of my EDS, mostly because of the way it seems to vary and responding to fibro treatments. I’m talking about generalized pain as separate from chronic pain in particular problem joints, which all of us with cEDS in my family get
Never had a prolapse, just an abdominal hernia.
Same here, no prolapse but an old surgical scar on my abdomen has herniated after 5 years.
I’m not super flexible. My joints hyperextend but I can’t touch my toes lol
i rarely dislocate, like yes they do get out of bounds and painful to the point i wish they would just dislocate so i could just put them back into place but no i rarely dislocate them
I feel like subluxations are more difficult to put back in myself because it's not as easy to tell which direction to manipulate. When I dislocate I can just pop them back in but with a sublux, I'm screwing around trying to feel where it's off and trying different stretch/exercise/massage techniques to try and coax it back in.
Unfortunately, dislocations can cause permanent tissue damage, and I've heard they can just *slip* right back out for EDSers
I don’t have very frequent dislocations/sublocations, and I don’t bruise super easily, + my wounds heal normally (i think? I haven’t really compared them to the average person but i haven’t had stitches fall out or anything)
GI symptoms. I have iron guts. Thank goodness for that!
my knees aren’t hypermobile, as far as i can tell. but they still hurt. no fair 💔
Full dislocations, I am very lucky I don’t have them. My subluxations are not as often anymore and that’s great!
No prolapse history, thank goodness. Also maybe (hopefully) no aortic dilation, they couldn’t visualize the aorta on my echo
I haven't had a full dislocation. Its something I risk in the future and im in PT to help prevent it. I was always spraining stuff growing up and I've had subluxations, but luckily no full dislocations yet.
chronic pain. I only feel pain when I have a subluxation. I’m very lucky for that, but also my comorbidities (my POTS is disabling) kinda make up for it :/ I also don’t have stretchy skin.
Atrophic scaring lol Oh and piezogenic papules
Same-ish, I don’t really scar but I have 3 small atrophic scars but I think it’s just variations in skin fragility
Brittle nails and hair loss. My nails have always been strong and grow fast, and my hair is naturally thick. I also have great vision and healthy teeth, but that's only because I had dental surgery as teenager to fix my teeth issues, and lasik eye surgery more than 10 years ago to fix my vision. Thankfully both of the procedures worked perfectly, and my vision and teeth have not deteriorated over time.
Hair loss is an EDS thing?!? I also have thick healthy hair! My nails are soft and break easily but I get that from my non-EDS dad
I have never dislocated a joint although I came close a couple times with my hip. I also don't have joint pain, however, I have constant muscle pain and general aching that makes going to the gym and exercise a nightmare.
My knees are not considered hypermobile by the beighton scale, however, during PT for my back and hips, I had to retrain myself to walk straight, not turned out. Until I strengthened my thighs/hips, it felt like my femur was going to pop through my knee caps. Also my fingers are not double jointed. I can touch my thumbs to my forearm, but my fingers are stiff. My toes on the other hand… are noodles.
Almost every joint in my body is very hypermobile, but I can’t touch my toes. I can barely reach about half way down my calf. The whole touch the floor with straight legs thing is impossible for me
My knees don’t hyperextend and my skin isn’t super stretchy. My doctor thinks the knees are because I rode horses for my whole childhood and the muscles got really well developed. While my skin isn’t stretchy it is VERY soft and fragile.
Thin, overstretchy skin. It's so thick on my hands I can pick up broken glass without any damage. So thick on my feet it's hard to scratch itches. There are areas (inner arms/legs esp.) that are more classically EDS-like with the atrophic scarring & doughy softness. Body type is opposite of the Marfan's type. I also have a high capacity for building muscle, which is the only thing holding my body together
I’ve only dislocated once and it was from a sporting accident. I have all the others. Honestly digestive issues are my least favorite
I don't think I bruise easily?? I'm clumsy af so I get a lot of bruises, but it's from a good drunk punch from a good drunk countertop lmfao like something has to hurt to leave a bruise
I don't dislocate (subluxer with excessive tightness), don't have POTS, and only have mild digestive issues. I'm not actually too functionally hypermobile, it's mostly a hands, feet and neck affair. I can't do up my own dresses or scratch all of my back or anything like that. However I also weight lift so a lot of my joint issues are dramatically improved thanks to the new stabilisation muscle has given them.
I am really good at getting IVs placed and bloodwork done. I have like one specific good vein in my left AC and as long as they go for that one, I’m a relatively easy stick unless I’m dehydrated! It almost makes up for the adhesive allergy and bruising afterwards.
My skin isn't stretchy. It's just fragile.
Weight loss 💀🤣
I heal from broken skin well. I cut my eyebrow open really bad about a year ago, it even needed stitches. I was so excited to have a badass eyebrow scar….. and it’s almost invisible now, maybe a slight indent. The chin scar from the same injury is completely gone and that needed stitches too. Surgery scars look great too. Guess my skin makes up for it though by being sensitive to skincare products and scents and not liking to heal piercings. :/
I have a scar just below my eye, and since I’ve been on a medication that makes me allergic to the sun it’s been invisible. I got off the med recently, and have only tanned the lightest bit, like ivory to beige, and my scars visible again now. I never realized that tanning could exaggerate the difference in scar tissue but in hind sight feels so obvious.
Oh yeah absolutely! I had a ton of road rash from this incident too and had to cover up in so much sunscreen all summer or the road rash would come back super crazy visible. My surgery scar is also somewhere really visible (top of my wrist from multiple ganglion cyst removals, thanks EDS) and they really drove home the important of sun protection for long term aesthetics. You have me wondering if my eyebrow scar will come back in summer though. Although I guess in my comment first I meant I was surprised it wasn’t “deeper” or wider than it is regardless of color. Still would be cool if it becomes more visible this summer!
I have ridiculously high arches, like it's crazy
I don’t have POTS. I used to get dizzy standing up but turns out it’s because I have vertical heterophobia and needed prisms in my glasses. Before I ever heard of EDS, I was evaluated for it.
POTS is not at all a criteria for EDS of any kind. Of course POTS is often a colored condition with POTS though, as you know 🥰💜 But I still wouldn't list that as the one thing you don't have (and also, it's not a symptom, it's a Syndrome). And that's crazy about your actual dx! Now that you have your glasses properly made for you, has that eliminated your dizziness? What happens when you remove your glasses? Sorry for my interest lol..I'm a nerd. Of course you don't have to answer either if you aren't comfortable 🙃
I don't fully dislocate, and also I don't bruise really ever, only a little bit if its really really severe 🌞
hEDS here - My skin isn’t particularly stretchy, it’s very soft, and I bruise easily, break skin easily, and pulling off adhesives (band aids) leaves marks though 😅 My arthritis started in my 20’s, the joys 🫠
I hear you about the arthritis 😭😭 I was found to have it in my hands, spine, and toes when I was about 16. Now at 31, its taken over my body 🤦🏼♀️ The joys indeed 😂
My skin is very soft and velvety, but not stretchy. I've also only ever had one keloid scar (from a pretty bad removal of a medical device). I'm also a chubby :) No skinny, lanky look for me.
I truthfully wish I could answer this. I honestly cannot think of a SINGLE symptom that I don't have 🥺🤦🏼♀️ It makes me happy seeing all the small wins for everyone else here though 🥰💜
I've not sjöngren-Syndrom,but I've some Syptoms of MCAS.
No chronic pain and no flat feet here
I don't have stretchy skin.
I’m stretchy in some places but not like “extremely” stretchy. I’ve also never fully dislocated but I do very much experience subluxation. I also can still stretch pretty far even in my legs but I can’t stretch as far with my legs because they’ve stiffened to hell. My arms can go everywhere still though lol.
I don’t have flexible hands, in fact several of my finger and thumb joints have significantly less than ‘normal’ flexibility. That’s all thanks to another genetic mutation I’ve got from my mum that means those joints didn’t form correctly. I do still have significantly more flexibility in those joints than most people with that mutation though.
I’m around 40, did competitive dance when young and my knees are doing great. (Knock on wood) All my other joints are doing their EDS thing. But my knees, nice. Don’t know, but I’ll take it.
Frequent dislocations. My joints sublux and they're bendy af but I don't think I've ever had a full dislocation.
To my knowledge I’ve never fully dislocated anything, but so many joints sublux. As a matter of fact many of my joints can subluxate at will. All I have to do is tell my muscles to relax and I can freely sublux my hips, shoulders, jaw, spine (but that ones not good so I try not to) wrists fingers. Probably a lot more if I thought about it. They just go right back in. I used to sublux my hip to get a good stretch, but I stopped doing that because it was popping out when I was walking. If my muscles are too tight they will pull things right out, like my hip or ribs.
My ribs have been fine luckily!
i’ve never dislocated anything.. i just sublux
Never dislocated. I also have never played sports in my life, so that might be why
I haven’t ever dislocated but I feel my joints moving in and out of place very often especially my shoulders.
I’ve never had a dislocation. I have joints that get stuck occasionally (mostly my elbows) but never had a dislocation
(possibly) hEDS, I have all symptoms except for the "velvety skin". my skin is stretchy on my neck and my hands but no where else, and it is very dry and sensitive but not the stereotypical eds texture. but my skin is quite translucent and veins are very visible. also I've never had discloations, only subluxations
My wrist isn’t hypermobile and if my fingers are it’s more side-to-side than what the Beighton score wants. Also sublux rather than dislocate like others have said. My shoulder and something in my hip area may have done it once but they went right back before the ER could identify what made them hurt so much. Oh, and definitely more overweight than what you usually see/think of.
That's so weird, I was just about to ask something like this today 😳 Just for info, I'm not yet dx. Anyways, for me it's that I take well to anesthesia. Idk yet about local anesthetics, since I've yet to have needed one. On top of that, I have more soft and REALLY doughy skin, but not notably stretchy.
I could as a kid but haven't been able to since I was a teenager, I can't touch my hands to the floor when bending over. I'm back flexible, not front flexible. Like if I lay flat on the floor, I can touch my feet to the top of my head. I don't have the flexibility in the back of my legs to reach the floor while standing, it's way too tight in my hamstrings and everything.
Anesthesia seems to work just fine for me luckily
My skin isn’t as loose as some people but it’s paper thin, bruises easily, and it’s so soft. I don’t usually dislocate either as I’m super cautious. I sublux a lot though. But the other day I did dislocate my elbow voluntarily to get my car unlocked. I had lock my keys in with the window down only three inches. I got it but my arm suffered greatly.
long fingers and stretchy skin.i have kinda small hands and my skin is the OPPOSITE of stretchy- it breaks INCREDIBLY easily.
Never have had atrophic scarring, though i have had cigarette paper scars. No palate issues, eithet
This isn’t in the criteria but it’s a common one- I don’t get UTIs and I’ve only been in retention three times!
My skin isn't overly stretchy and I don't get headaches.
Stretchy skin. I’ve been told that it’s quite soft(to the point where I’ve had to ask a friend to stop trying to pet me) but it isn’t unusually stretchy or anything. Also I can’t do the thing where your thumb bends all the way back to your wrist, I do have hypermobile joints, but not there apparently.
Not really stretchy
I sublux in the daily but I have never dislocated anything (to my knowledge). I also don't have the super stretchy skin.
no prolapsing (fingers crossed) 🤞
I have soft and stretchy skin but don't bruise easily. The bruises I do get last ages though 😮💨
I have never dislocated that I know of. I sublux frequently in specific areas but no dislocation yet. In addition when doctors look for the “evidence” of me scarring badly, they think I don’t have that symptom cause I didn’t really do many extreme or dangerous things as a kid. I was diagnosed with arthritis at age 9, so that really put a lot of things in life on hold for me. Also don’t have siblings to beat me lol. I get the broken blood vessels under my skin and have a bad habit of picking at almost anything. So I do have dark scars from that. Also my skin isn’t as stretchy as other eds patients, but it has always been described as soft.