DustinJL
20322
298
18
(Copy/Pasted from Google for my ease.)
Ehlers-Danlos syndrome (EDS) is a group of inherited genetic disorders that cause defects in collagen, leading to connective tissue that is weak and fragile. This can result in a wide range of symptoms, including overly flexible joints, stretchy skin, and easy bruising. Treatments focus on managing symptoms, such as chronic pain and fatigue, through physical therapy, medication, and sometimes surgery.
In this picture, you can see how overly stretchy my skin is, as well as my overly flexible elbow joints.
Ballerina-like flexibility in my legs!
I can dislocate both of my shoulders just by flexing a muscle a certain way.
Other symptoms I have from Ehlers-Danlos:
1) Very easily bruised.
2) Sunburn VERY EASILY.
3) Weak tooth enamel. (I haven't had any teeth since I was 19-years-old, and I'll be 29 in January.)
4) I'm always tired as well.
5) My ankles roll in and my foot arches are collapsed causing foot, ankle, knee, hip, back, shoulder, and neck problems.
DeakVanNyke
No offese but #3 is quite common flex, i think.. right, guys?
ProbablySmellLikeDoge
EDS is a bitch. Thank you for educating people.
solosadness
So this is what Tooms had in X-files!
AprilSpectrum
Me and my siblings doing "Flintstone stance" with our feet like that to be silly
HardcoreMango
When I was a skinny kid I could reach around my back and touch my bellybutton.
DustinJL
I can still do that. 🤣
catwirk
me, too, 4) and 5) are hardest to deal with, esp 4). I've had fewer than 30 "good days" this year. Thanks for your vivid awareness-raising post.
PanamaCanal
I can do the shoulder thing too! This is the first time I’ve seen someone else do it!!
thibaud101
Me three!
SophieClockwise
Yeah, baby, you show off that wenis!
foxybelle
I have eds too!!!! I like to creep people with my hand's "party trick" ;)
MadeThisAccountToAnswerQuestions
Migraines with auras. Heartburn. Thin fingernails. Various Joint pain, but especially in fingers and hips. Inability to sleep in a consistent position for more than a few hours due to joint pain. My gf is not having a good time with it for sure.
DustinJL
Minus the thin fingernails and the girlfriend, I have the same problems on top of what I showed/talked about here. https://media2.giphy.com/media/v1.Y2lkPWE1NzM3M2U1cnJuODE0MzZmMTdjNjVmdzVsOGJsa2E1NzZ3dWxlZ3l5ZDNucmNpeSZlcD12MV9naWZzX3NlYXJjaCZjdD1n/11zTEl7fbwml68/200w.webp
MadeThisAccountToAnswerQuestions
upon meeting her, and taking almost a decade for a diagnosis, I'm thankful I do not have the same condition. I hope better research and treatments are focused on for the immediate (and continuing) future.
slack3rdav3
Thanks dude. EZ diagnosis.
Gin2ki
Ditto, and it sucks! My ankles and especially knees are also complete trash and the knees often dislocates if I step wrongly.
slack3rdav3
i fucked my knees running in the military. wondering if it's actually this and not runners knee.
sh17picker69000420
"Oh I can do all of that!" *Immediately breaks arm
FallenJester
My bestie has this, every morning her husband gets to pop her joints back into place. Her body relaxes when she sleeps, so her shoulder can just kind of roll out of the socket.
StrangePaegan
I use Squishmallows to prop my joints so they don't slip as I sleep.
DustinJL
I do the same thing with regular pillows. I'm gonna be getting myself a pregnancy pillow soon as well.
DustinJL
I wish I had someone to help me like that! Instead I have to fight my insurance to be seen 6 times a year by a chiropractor. If I went more than that I'd have to pay 100% out of pocket and that would be nearly $400 a visit; I only make $13,000 a year so that's obviously not an option.
YinSno
Only very recently figured out that I had EDS and it's been fun discovering all the things I thought were just a part of life that are actually linked to it >.> Just hoping I don't have the unlucky 1/13 types
genericannie350
Coming from someone who also has a hyper mobility condition, please stop doing the stupid human party tricks. What is coming is severe arthritis and multiple surgeries do to joint instability if you don't work on physical therapy.
genericannie350
Also if you bruise easily you should be checked for vascular issues. I had an aneurysm in my leg that would have killed me if it had ruptured before they caught it.
DustinJL
Don't worry, I don't do that stuff all the time. I was just doing it to share the condition and its symptoms.
SebastianCrab
Wait, can people really not do most of this stuff...? I can do most of this stuff...
Bladedrummer
Same, but I realized I have mild eds years ago...
AK90
Yeah Im getting slightly worried xD I can do most the stuff here too D:
BloodGoreJuicesGalore
I can't do anything pictured here.
Sakkura
I can do #2 but not the rest.
BklynPunisher
I can do #2 usually two times a day. Sometimes 3 depending on what I eat.
PanamaCanal
………………..
AnActualTechPriest
Once had someone tell me they thought I had this. I was like “nah.” But I can do all of those stretches easily, and I burn to a crisp in the sun. Tons of weird medical stuff and chronic fatigue doctors have never been able to diagnose…maybe that person was onto something haha
dillluethesciencedude
While I've never had anyone suggest this to me, I have always been especially flexible and can also do most of the stretches shown here. Back in high school I had a wrestler friend put me in some submission moves and I just looked at him confused because none of them hurt. He was also confused.
facepalmingestpanda
Definitely get a referral to a rheumatologist if you can, my quality of life improved DRAMATICALLY once I got a diagnosis.
MadeThisAccountToAnswerQuestions
Curious to ask, but what changed once you got a diagnosis? My gf has been struggling with pain in a lot of ways.
facepalmingestpanda
A big part of it was just the relief of not having to endure test after test chasing increasingly rare and scary diagnoses. An even bigger part was getting access to pain management and occupational therapists that helped me make a lot of adaptations to the way I do things day to day.
Thedoctorisout
Mayo clinic in Jacksonville has an EDS clinic
DustinJL
I live right next to Rochester Minnesota, the city where the Mayo clinic started because a Tornado destroyed the city in the 1880's and the closest hospital was in Minneapolis/St. Paul 80 miles away! A LOT of people died that would have otherwise survived if a hospital/surgeon was closer.
I go there all the time, but sadly I don't get the best care they are capable of since I have government assisted insurance. (AKA, I'm poor.)
DustinJL
I'd suggest looking into it if it's an option for you. It took me 28 years to figure it out, mostly because I live in the U.S.A. and medical stuff is expensive, and I am very poor.
DenitaTv
Sorry to hear your struggles with expensive healthcare. I'm from the UK and it's still a massive struggle. I got diagnosed at 16 years old, I'm now 52. EDS being rare means you have to fight every step for proper health care. Most doctors have never heard of it and even if they have, they have no idea what to do. Doctors attitudes has sucked, they have been dismissive, clueless and even lied to me. I've been denied proper pain management. Hell, one Doctor said there was nothing wrong with me!
3andAHalfLivesAgo
I can do the first picture with my right arm but not the left! Can also dislocate my shoulders at will by grabbing something and pulling (but pulling from the shoulder instead of the wrist/forearm if that makes sense). Never had a doctor think ED though. Outside of dislocation complications are there any common issues?
oneirosis
I'd say the worried looks after effortlessly popping and snapping own joints back into place, upon waking up, is the most comedic part.
StrangePaegan
*having joints dislocate during sex, pop them back in, startle the other person by resuming sexy time*
CanIGetSomeExtraSalt
Humputse
Be sure to get a heart checkup at least once. Aortic dilation is associated with many connective tissue disorders including E-D.
cheezmuncha
Such a big range of EDS and subtypes. There’s also a big difference between subluxation and actual dislocation. Also, many young teens are tending to grasp onto this ‘diagnosis’ as a means to not work, and live off disability pensions. It’s really sad, they go through the spiral of joining social media groups that feed off each other rather than just supporting and encouraging them to strengthen/exercise and work to live their best lives. Small portion I guess, but my niece is living proof…
thatwastooclose
Ya know that thing that the zeitgeist convinced us that Marilyn Manson could do....how about that?
DustinJL
Yes, yes I can. Just not very far is all! 🤣
ConsummateConundrum
giraffytaffy
I have a very close friend who was just diagnosed with EDS. I love that she finally has answers and treatment for this thing she's struggled with most of her life!
TheWeebleWobler
And now for his only fans account : .
kummerspecksbitch
https://media2.giphy.com/media/v1.Y2lkPWE1NzM3M2U1Y2Y2cnZyamhrM2xpNThrN3RxZ3lka2dma2hza2Jsc3MxdmE1Y3M1cSZlcD12MV9naWZzX3NlYXJjaCZjdD1n/JOXqs8OOa7Gp8JMHnb/200w.webp
xovoxovox
Lucky. bet it comes in handy when you can't find a back scratcher.
DustinJL
Yes, but the downsides definitely aren't worth it at all. Lots of physical pain and exhaustion while I have people telling me I'm lazy because I'm not able to do what other men are able to do for work. I once fell asleep in the shade of a house I was supposed to be doing landscaping work on. Had to remove river rock from a flower bed. https://media1.giphy.com/media/v1.Y2lkPWE1NzM3M2U1OTJkZW44bGFnNmlyMjA3cTdrcWo4azMwNml0eHJ6bGxyajBzams1YyZlcD12MV9naWZzX3NlYXJjaCZjdD1n/SVgKToBLI6S6DUye1Y/200w.webp
SilentSecretMan
Any positives to your condition?
sinskittles
You visually pass as an able-bodied person so when you park in a handicap spot, use one of the limited number of scooters at Costco, and ask for disability services at events and amusement parks then you get questioned harder, funny looks, and angry comments behind your back 🙃
astrangehop
People with EDS have such relaxed collagen that they often don't get wrinkles and maintain a youthful appearance even into middle age.
Thehungrybunn
Doctors are willing to prescribe you unlimited physical therapy.
sometimesarobot
Ability to weird people out whenever you want just by moving fingers
BklynPunisher
They can pat themselves on the back for sure.
facepalmingestpanda
Ehlers-Danlos haver here, we're less likely to break bones because we tend to dislocate/hyperextend everything instead (they usually pop back in pretty easily ime). Sometimes our skin is younger-looking because of its increased elasticity. The community is full of great, supportive people. We're often tall so we can see/reach the top shelves (they're gross, hth). We can also be neatly compacted to fit inside of a large carry-on bag, but only once (this kills the EDS person).
AprilSpectrum
"fit into a carry on once" is my fav line
facepalmingestpanda
Also there are like 14 classifications of EDS and the symptoms range from being able to do fun party tricks to dying like 30 years prematurely, so mileage varies a lot from one person to the next. Shoutout to OP for the post, visibility matters!
PagetheFound
Yes, i am probably one of the luckiest ones out there, and as far as i know the only EDS patient crazy enough. I teach martial art. I figured elastic muscle is fast muscle. If i am faster, that means you get hit and i do not. I just have to make sure i am good enough, and specialize on not getting hit, and so i did. And so far i have never met a faster fighter, and have risen to a international lvl of recognition in my style. Now at 45 though, my body has caught up and i recently had to retire.
akelamishari
There are degrees too? I have several of these albeit much less intense! Um, now ill have to look into this
DustinJL
https://media2.giphy.com/media/v1.Y2lkPWE1NzM3M2U1c2hmOG83cXZpMnloanNmd20ydWdyOGJxMWZiNDRoeTc3MWc0cjQxZCZlcD12MV9naWZzX3NlYXJjaCZjdD1n/pHb82xtBPfqEg/200w.webp
DustinJL
I can scratch any itchy spots on my back by myself. Also makes it easier to wash my back in the shower.
I can also perform autofellatio somewhat. 🤣
adamlstf9
It’s a lot more like sucking a dick than getting your dick sucked somehow. At least it was for me.
AprilSpectrum
Being able to solo sunblock/lotion is cool. Zipping my own dresses.
Downside, knees bend backwards at random
YinSno
Ahhh the knees! Makes it so fun to rest your foot on anything when sitting down, huh??
DustinJL
Had my left knee fold inwards one time when I was leaning on a wall. Hurt like a MF!
WhiskyBravo
I did that in HS to my knee doing track / hurdles, found out later it was called hyper-extension. Hurt like a MF. Then a coach planted a foot into my ballsack and yanked it back into place. I passed the F out. When I woke up he was all proud of himself like "See you're good as new! Walk it off!" . Asshole. My left knee has never been the same since and it pops and clicks and hurts 35+ years later. But hey I can predict rain sometimes...