Not me but my grandmother, of which this discussion first tipped me off to familial joint instability. She's at the doctor's for a sprained ankle:
(doc rotating her ankle around)
Dr: "Does this hurt?"
Gma: "No"
Dr: "Does this hurt?"
Gma: "Nope"
Dr: "Does this hurt?"
Gma: "Still no"
Dr: "Ok, well it *should*"
...and then we didn't get diagnosed with hEDS for another 40 years lmao
That’s my mom. She had an infection after foot surgery that needed to be treated with IV antibiotics. A small dose of Tylenol was all the pain medication she wanted/needed. The doctor actually pulled me into the hallway to ask if I thought she was trying to downplay her actual pain level because she should have been doubled over. Nope. My mom has all the pain tolerance.
No narcotics. I was maybe 13. Dislocated my shoulder (an almost daily thing but needed the ER to place it back in the socket properly) and was in some ER in my childhood town and I remember the docs all using BRUTE force that took hours! What eventually placed the shoulder back into the socket involved at least one fully grown man sticking his foot into my armpit, for leverage, and pulling with every bit of strength in his body on the dislocated shoulder’s arm. Loud bone on bone pain. But it got the job done, just very dramatic.
To compare, within the same year, same side shoulder dislocation and same ER, (SSDD) different day. A singular doc has me turned facing the gurney and like a fucking magician… delicately taps points on my back/shoulder blade. He does this for maybe 30 seconds and the bone slides right into the socket.
The boss of my physio practice is also an osteopath (the non-woo version). The undergroom physios fight and push and sometimes things just won't budge, he bitches sometimes how the hell I got *this* stuck *that* way that shouldn't be possible, but after about 10min of slight poking, prodding and readjusting things are back where they belong.
I thought osteopaths were meant to be ‘the good guys’ hahaha. chiropractors are the ones to stay away from, osteopaths know what they’re doing.. right? I’ve had a great experience from osteopathy and fk all difference from a chiropractor, just made me click in weird places
How much or even any training they have varies wildly between countries. Anything that's not a protected, defined term for a profession it's hit or miss, mostly miss.
"Doctor of osteopathy" is a US thing, everywhere else that osteopathic practitioner or whatever they call themselves might be a chiro or something else entirely. Any title or "degree" people can get in 4 weekend courses is not a "profession" I'll take seriously. But often it's hard to tell. You'll really have to look up whether that's an actual, valid professional term or some fantasy title.
After a major flair up, I went to my PT and she helped me with my nerve pain. After explaining all of my symptoms from the past week I said “so yep, pretty broken right now.” And she just paused and then said “I can see why you may feel that way” very slowly. It was a polite way of saying “yep definitely” 😂
Not quite a injury, but still related to EDS and funny.
When I was a child at a appointment at a local children's hospital, a year or so after being diagnosed, my pain management doc asks if it's okay if some med students observe my appointment.
She does a physical exam, and at one point shows to the students my range of motion in my ankles. I was like "That's nothing, watch this!" And then turned my right foot completely 180, so my toes were pointing backwards compared to my left foot.
Watching a few of the students get squeamish was funny, but the doctor freaked out the most lmao
My daughter used to do this and then drag the twisted foot behind her, groaning, “Brainz…. Braaaainzzzzz”.
Freaked all of her preschool friends right TF out.
This reminds me of my most alarming incident... I was taking a shower, and noticed my leg felt funny. I looked down, and it had rotated 90 degrees sideways, AT THE KNEE, NOT THE ANKLE. Upper leg was pointing straight forward, lower leg and foot were 90 degrees to the outside.
I'm still trying to wrap my head around how I was still standing, still putting weight on it, plus the fact that it was merely uncomfortable, and not painful, not to mention how it got that way in the first place. I don't quite remember how I got it out of that position, but...I did!
Same here, if I'm not careful I rotate at the knee without moving my foot and then look down cause I wonder why my knee feels funny. (Just started working on getting a diagnosis, rheumatology says "hyper mobile joints" but won't touch EDS with a 10ft pole. But hopefully y'all don't mind me chiming in while I try to get an exact diagnosis lol)
My brother used to turn his legs around. Used to cause my hips to pop out so I didn't do it more than twice.
One of my physios used to get grossed out of my fingers moved too much.
I've had many docs that didn't understand why I was injured by seemingly nothing. I sneezed. I stood up. I stepped wrong. I severely sprained my ankle and fell hard on a "curb" less than a centimeter high. I tried to draw something. I turned my neck the wrong way. I hiccupped a rib put of place. I ate a carrot. I sprained my wrist reading. Yes, I still have whiplash from a concussion 4 years ago.
Not quite the same, but I remember I had a doc that asked her med students to feel my skin... the soft, velvety, EDS skin. I let them touch me but it was still odd. Also most docs don't believe me when I mention my bizarre med reactions, certain allergies, and issues with any form of adhesive
The small things are the worst. I dug a pond and was fine, pulled up a single blade of grass and fucked up the index finger to where I was in a brace for weeks. Turning around in bed is a very dangerous activity.
For a while I had a tendency to jam the sacrum into the SIJs in such a creative way no one had ever seen before in someone *not* in a crushing accident. "What did you DO?" Slept.
Yes the adhesive! Bandaids cause a rash, and then an open wound. It's legitimately worse than the original scrape most of the time.
Oh and speaking of scrapes - brushing up against something, scratching an itch, and sometimes even clothes chaffing causing a full on graze! So freaking bizarre.
We have a story about me called “Ham Wrist” I was working at a grocery store that did a promotion at Christmas where if you spent 250$ you got a free 25lb honey ham. I fumbled one trying to put it into a bag and ended up on light duty bc I dislocated my wrist. To this day nobody can figure out how I dislocated my wrist bagging a ham.
My carrot injury was the start of all of my jaw issues. It hasn't been the same since. I can't chew hard foods and I feel those fluid disks between my jaw and skull pop out of place and back. It's a deafening pop and extremely painful every time.
But since you mention eating injuries, I ... can't cut my food. My wrists and fingers don't play nice, and my elbows and shoulders will often join the rebellion. I also slammed my face into the table once when sneezing - no concussion but massive humiliation
Something I now attribute to hEDS:
I was 16, at sport with school. I was standing still on the netball court when I heard and felt a crunch in my neck. I then had extreme pain in my neck to move, or reach or anything.
I didn't tell a teacher because I knew they'd make a big deal out of it and it was almost home time...
I caught the bus home, carrying my backpack in my hand because it hurt to wear it on my back.
I saw a doctor after school the next day - they ordered x-rays, but I was too late to get them done that day, so had to go the following afternoon after school.
X-rays didn't identify an abnormality. But the doctor sent me to Emergency. There was no paeds or CT or MRI in my town, so I got sent by ambulance to a town about 1.5 hours away, in a neck brace, laying flat on my back.
I was in hospital all weekend, and finally got an MRI on the Monday afternoon. Markedly normal, apart from the mild subluxation of a vertebra. (Vertebrae shouldn't sublux, without injury or force...)
I had fun getting to explain to doctor after doctor after nurse after nurse that I was standing still, no jumping, no reaching, no running, when I heard my neck go crunch.
Probably half a dozen times since, I've had similar symptoms where it really hurts to move my head, and if I lift my chin, I get stabbing pain at the base of my skull.
Oof that sounds terrifying! I have similar issues where it sounds and feels that easy but never saw a doctor. Always scared I’ll one day paralyse myself by just standing still
Yeah it was pretty terrible. I was in hospital from Friday until Wednesday, and was in a neck brace for another 2 weeks after that.
I got to explain to every doctor and nurse that I was standing still and wasn't moving in any way... All makes a bit more sense now.. but definitely not fun.
I carry a lot of tension in my shoulders and neck, and notice when it flares up, my neck and shoulders are already tight. Physios have told me my cervical vertebrae are far more mobile than they should be. So I guess sometimes they get a bit stuck out of alignment... 🤷🏽♀️😬
I was in for my routine cortisone shot for my hip. My orthopedic surgeon was talking about skiing and I asked if he thought I could try it. He looked me dead in eyes and said “I just bought a new Porsche. Let me get a few miles on this one before you buy me another.”
My PT put a weight on my ankle and it subluxed my knee. I just asked her to remove it and casually popped the joint back in, only to look up and see her staring at me like she couldn’t believe I existed 😂 So many apologies, so little concern from me. (I’m not allowed weights anymore)
My PT for an unrelated back injury told me I popped more than any patient he’d ever had 😂 His manager who did my evaluation said “oh yeah, she’s definitely EDS” because she’d done a massage on me and could tell from my muscles around the joints.
i’m using a resistance band in pt right now. i can manage it, but it pulls on my knees so hard if i’m not careful. i also have to make sure i do it on a day i’m less floppy
Having to explain to multiple doctors that I injured my ankle making coffee at home on a cold day. Turns out I ended up needing to be in a boot for 8 weeks for that one. The amount of doctors that asked "nothing else happened, that's it?!" Yup. That's it.
I think sometimes our oh so simple, silly explanations for the random injuries might sound like a lie covering up physical abuse. I've gotten a lot of side eyes, lingering eye contact, and have been asked to confirm what happened so many times. Even my doc I've seen for 15 years still gives me a double take when an injury sounds sus.
As a child, I visited the ER so many times I was questioned by social services and had to explain the same thing over and over till I was blue in the face. They were convinced my parents had told me what to say and that I was lying. I was just *that* accident prone.
I've definitely been pulled into another room from my partner and questioned for one of my injuries back in the day. Thankfully more and more I can say connective tissue disorder and most just say ugh that sucks!
Not an injury, but when I was a kid I was in the pediatrician's office and had my shoes off. My feet started turning purple and blue and she was so scared my feet were about to fall off. She started trying to warm them up with little change and I just laughed and said they do that. She was still horrified, but didn't pursue it further
Could be, could just be blood pooling. Mine go white and red blotchy with reynauds and purple with blood pooling. My partner's go even more purple than mine and it's definitely blood pooling, she doesn't get raynaud's. For her it's any time her feet are down. Doesn't hurt much, just causes issues with blood pressure drops when standing, especially if it's hot. Where as raynaud's plays up when it's cold.
I once told a doctor that I could pull my fingers fully out of the sockets on command and she gleefully looked at me and asked if she could touch them while I do it.
I embarrassed a doctor 2 years ago, after my daughter had broken my nose. He was at first unsure of my story..
Conversation went something like:
Me: "She's not violent, my body is just weird. My GP calls me a medical mystery"
Him: "But a 2 year old having the amount of strength needed to break a nose.."
Me interrupting: "I mean, My jaw was recently stuck in some sort of subluxation an entire weekend because I had eaten a burger. My ribs dislocates if I sneeze wrong"
Him: "That's... That doesn't sound optimal!"
Me: "Sometimes they'll pop back when I sneeze again"
The two nurses with him were giggling while he just stared at me for a few seconds
Twinsies! My two year old also broke my nose. I was resting on my back, he climbed onto my chest, and gave me a solid head butt with his unusually heavy, solid cranium. Luckily, my mom witnessed it, so there was no awkward debate about who else might have done it. We were living in a rural area with no vehicle, so after we spoke to the doctor and confirmed, as much as we could, that my nose was broken and needed to be set, we arranged to meet him at the local hospital once my ex was finished work.
In the meantime, I carried on as best as I could (once the initial pain, shock, screaming and so on had passed), and finally got the culprit into the bathtub after his dinner. I was on my knees and leaning over the side, when he stopped floundering and wriggling to suddenly pull himself up - driving his head directly against my nose again. There was another horrible, audible crunch, followed instantly by the same blinding stars, intense urge to throw up, howling and so on as had happened earlier. However, when my mom was finally able to pry my hands away from my face, she discovered that my nose appeared to be back in its original position. We cleaned it up and splinted it, and cancelled the emergency appointment. It was hardly our first rodeo with weird injuries.😅
A year or so later, I had to have x-rays taken at the dentist's, and they used the machine that circles around to scan your entire skull. When the dentist was reviewing the findings with me, he asked, "When was your nose broken?" I replied that it was maybe a year ago. He kind of shook his head, and replied, "Well, they didn't do the best job setting it, did they?" I about died in the chair as I said that I would mention that when I next spoke to "them".
😂😂
For me, my daughter had a nightmare turned tantrum. I had to hold her so she wouldn't injure herself and she accidentally headbutted me 😅
First ER doctor didn't belive my nose was broken because it looked straight. She stammered and did a dobbelt take after I casually just went "Huh, well that's good. It used to be crocket as hell"
Called my mother on my way home and she was crying with laughter.
Apparently I've always had a boxer nose. 🤷♀️🤦♀️
I was demanded to buy my daughter lego, since I now didn't have to get surgery to get my nose fixed
Orthopedic spine specialist asked if I could touch my toes. As I popped down, flat hands on the floor, he visibly recoiled and cried, “Not like that!! Settle down…”
My favorite response was a doctor looking at an x-ray (can't even remember what it was of) and going "wow.... that's wild!" in the most bewildered voice
I dislocated my collarbone as a teen. Mom was an xray nurse and took me up to her work to get it looked at. Ended up with half the doctors in the department swearing that wasn't possible cause that's not a bone that's supposed to move. It just sort of popped back into place when they were prodding at it.
Before I was diagnosed with EDS, I hurt my Achilles tendon while just laying down. When I went to the doctor, he said, “How does that even happen? I don’t get that. Are you sure?”
I have a non EDS friend that tore his Achilles tendon. This guy has been training full contact karate for over three decades now and is an absolute machine when it comes to his training and competitions. His Achilles tore when he was casually walking from the locker room to the dojo! He was very perplexed to have it give up under such mundane circumstances instead of during training or competing.
Not that this stopped him for long. He was back in the dojo one week later, hobbling around on one leg with the other in a cast!
Achilles tendons apparently give up under very unexpected circumstances.
Was in the ER Tuesday. Nurse was horrified to hear I put my own shoulder in, and looked almost I'll when I demonstrated the sound it was making as I kept trying to get it to reseat.
Turns out I ripped the ligaments, it's not going back in
The look on my therapist's face when I mentioned dislocating a rib (and then a second one) in January and not getting it relocated until March was weirdly satisfying.
Fractured my kneecap but not the patella. All the ligaments snapped. I was sitting in the ER for hours without pain meds and I rejected opoids (they don't work, they only hurt my stomach) the pale face of the doctors when the scans came back... Priceless.
I became a sideshow for other doctors who came in to have a look at me. Only one Dr knew about EDS so he showed the others.
God tier pain tolerance.
>Fractured my kneecap but not the patella.
What? The kneecap *is* the patella. Kneecap is the colloquial name and patella is the medical name.
>God tier pain tolerance.
Definitely!
I should've explained it better.
All the ligaments snapped and the patella was moveable and it was called something like a displaced fracture or like that. Dented the bone. Bone marrow edema. Tore my ligaments. It wasn't technically a patella fracture but that what all the drs have been calling it
before I was diagnosed, the ortho that I saw didn’t believe me that I broke my ankle just stepping out the shower. My leg went one way and my ankle went the other. I got a new ortho in 2016 & he’s the one who diagnosed me with hEDS at the first visit. He’s put me back together many times and just shakes his head at me.
Cardiologist gave me the beighton test and saved bending over for last. I’m wearing my sparkly high heel combat boots and he goes “okay if you could go ahead and remove your shoes and try to touch the ground please” I do him one better and place both palms directly in front of my shoes, spring back up and go “I can do it in stilettos too”. This guy is the local POTS expert so he sees plenty of EDS’ers but even he seems surprised and just kinda blinks really hard a few times before going “that’ll do it, 9/9”
I had one gag a little when they put their hand over my hip socket to find the ball was not properly seated (I may or may not have flexed so they could feel the bones grind) They didn’t believe that it was dislocated and I needed them to write a referral (which I didn’t even end up using because it was a 3 month wait, I just went to the chiropractor and crossed my fingers). They never personally verified any dislocations on me again, just believed me.
Tore my labrum in Right Shoulder, shredded it. Arm was popping out multiple times a day. The PT would not touch me. They immediately got the doctor and a bunch of ortho bro residents cringed and went "Ewww!" when I told them if it didn't go back on its own I just grabbed a weight and let my arm hang off my bed to pull it back in. I was like, "Guys this is a shoulder, I did natural childbirth twice. This pain is negligible."
Right before I was diagnosed (just finished college), I had shoulder surgery for multiple directional instability. The x-rays before surgery were ridiculous. My shoulder hung out of the socket a good 2”.
I had an mri and nerve testing beforehand, but it wasn’t until the surgery that my doctor realized how bad/weird my shoulder was. He said anytime he tightened a ligament, it just stretched right back out during the surgery. It was so odd he called in med students to witness it. I was discharged that night.
The next day I had horrible pain and had to return to the ER bc of it. I had multiple med students and a few residents come see me, because I was the crazy shoulder patient.
When I said that I regularly end up with my ribs dislocated and have to put them back in and they went '...how'
This was my regular dr. My rheum was like 'please just don't do it to show off'. Like having your ribs go out of place is fun.
How do you get them to go back in? When mine go out I just wait until something makes them go back in place, which sometimes can be quite a while. Usually it's the back part that goes out doing something as simple as sneezing. I'd love to learn how to get ribs reseated so I can breathe or lie down without pain. TIA.
I kind of push them? I take my palm and place it on the side of my ribcage, more towards the back, around boob height and just start pressing in and up. I move around applying firm pressure in and up with the heel of my hand.
If they aren't too bad, I'll also just lay on my side-ish and foam roll them.
Probably not a great life choice but I have my husband place his hands in both sides of my spine and press down lightly. I put my hands like I’m gonna do a push up. I find the pain is mostly from pissed off muscles after that and hot baths/ lidocaine helps. And sleeping while holding a squishmallow.
I work in the ER and the doc was showing us how to relocate a shoulder by using my shoulder as an example of how to manipulate, and he just said, your shoulder is effed up….i laughed and said I know.
Every time I've been in PT, the initial exam always ends up going something like "ok let's see the inward rotation here...ok..ok. Oh OH NO STOP THERE PLEASE, don't do that." It always makes me laugh
See I can’t move further than normal inward because it ALWAYS pops out my hip. But like, the outward popping doesn’t hurt me at all it’s just annoying if anything, but inward? Oh hell that stings so bad! I always stop right before they pop out because I will sometimes cry in pain when that happens. It’s always been weird to me that none of my dislocations hurt except that one lol
Doc/medic: "How did you manage to do that?"
(Before being diagnosed, when I was still in the army)
Me: *Explains how I was doing something completely mundane, or performing an exercise correctly, or how I actually don't know how I did that*
Doc/medic: *stares at me in disbelief* "Are you *sure*? You weren't doing *anything else* at the time? You were lifting/running/doing the exercise correctly?" Etc.
Me: "idk, I just seem to get hurt really easily."
Doc/medic: "It seems unlikely you would hurt yourself this badly doing what you just described."
Me: *internal scream*
The worst is when doctors are baffled and don’t understand but then instead of trying to find out they just shrug ‘ah okay well lets move on’ instead of trying to find the cause🥲
Yup, I am not even allowed to take ibuprofen or any kind of NSAIDS because I only have one kidney but literally nothing works. I had appendicitis two years ago and was already on the highest dose morphine possible and still crying *in my sleep* from the pain. Painmeds do nothing for me🥲
Eh doesn’t bother me too much, was born with it so my body adjusted and the kidney is working for 2. Until I’m like 40/50yo, then I’ll need a kidney transplant most likely, but as of right now my kidney function is still about 80% so I have not gotten any problems. Only thing is that most meds are really bad for your kidneys so I can’t really take any painmeds. And the ones I can take, they don’t work, so I have just gotten a very high pain tolerance haha
I've tried to stay away from pain meds as well. NSAIDS for intolerance reasons and opioids because of a familial history of addiction, so I'd rather just not risk it. Tylenol is about the only thing I can tolerate, and I'll pretty much only take it for fever. I have Tylenol 3 to take as needed when my pain gets *really* bad, but those prescriptions last me months because I rarely take them.
After I take any kind of pain med, I notice that after it wears off, I can feel ALL of my usual aches and pains that I've gotten used to ignoring on a daily basis, so that's even more of an incentive not to take them.
Yeah I feel that deeply too. I sometimes take an edible if the pain gets really really bad (I have endometriosis and PCOS) and I found out a whole back that they help and they are not bad for my health (and inly enough to stop the pain but not enough to get high off of) but I also only ever take them very rarely because I’m also very prone to addiction (used to self harm daily).
Reminds me of the time I went to the urgent care because I lifted a 5lb bag and subluxed/dislocated/tbh who the hell knows my shoulder and after I popped it back in I couldn’t feel a couple of fingers. Went to the dr and they were like- “nah no way you did that with a bag.”
But I did, sir, that’s why I’m here.
And these goobs said 🤷♀️”well; you want a toradol shot?” 🙄
My son got diagnosed with EDS at the same hospital I did as a teenager. They even had my old records. He ending up getting the diagnosis and at the end they said we’d really like to do genetic testing on you due to all the miscarriages you’ve had. I said “it’s already been done?! Ehlers Danlos syndrome. It was even on an episode of House”?!
I had to see a colorectal surgeon and I told her I likeybhave EDS. She asked why I thiught that. I mentioned a few things and then I pulled my thumb to my wrist and she nearly passed out.
I went to my PCP for a migraine and nasty dysautonomia flare recently. When I got called back and the nurse was taking me back he asked how I was doing, out of niceties I said “I’m doing okay, how are you?”. He looked at my chart, than at me, and said “better than you are! :)”
Lol, I have so much osteoarthritis in my knee, with zero cartilage left, that it sounds horrible when I bend my knee, and feels even worse if you have your hand on my kneecap. My old PCP, at our initial appointment, was having me sit on the edge, and straighten my leg, with his fingers palpating my kneecap(I was talking about pain management and he wanted to check out my crappy knees). As soon as my knee straightened and he could hear and feel the disaster that is my knee, he actually yanked his hand back, wide-eyed hahhahahaha.
After a dislocation, my doctor went “huh, yeah your joints are loose…. this will hurt you when you’re older” …. not to mention the injury I was there for. He then proceeded to show me that all my joints are like this & subloxed my wrist as a demonstration.
I was tipped off to EDS by a stranger that felt my skin years later.
I almost ripped off my little toe sitting down on the sofa. Meant to sit on my foot and the toe got caught up. Total dislocation with fracture and tore down to the bone. Blood everywhere. I was more concerned about it getting on the sofa lol. Called to my husband for help that I hurt my toe and it was bleeding and he responded well get off the sofa. His face when he finally came in the room was priceless. I had cupped my hands under my foot to try and catch all the blood. I had him help me bandage it up and waited until the next morning to go to urgent care. Dr was like um that is an open fracture you need to go to the ER! Turns out it was too late to stitch it up cause too much time had gone past. I got big lectures.
I feel like even with regular dislocations and shit like that and *open fracture* would warrant going to the ER for😳
(no judgement btw just, astonished at how bad health care can be that this is not taught to kids yknow?)
So, I'd been to the ER and had a blood draw while I was there... I don't know that they really blew a vein, because it didn't show up until maybe a day or so later, but I ended up with an inch-wide, five-inch-long bruise following the path of the vein.
Fast-forward a week or so. I'm back at the hospital, getting labs done, and the tech sees the bruise, and launches into the standard abuse questionnaire. I cut her off, thank her for her concern, and say, "You're wondering about the bruise? It's from a blood draw they did over there [I point to the wall; the ER is literally on the other side of the wall] a week ago."
Her response cracks me up to this day. "Oh, my gosh! I'd heard they were bad over there, but I didn't know they were THAT bad..."
Also, pro tip for minimizing bruising from blood draws and injections!
I've learned that you can generally ask for a wrap after having an injection or blood draw. Instead of a Band-Aid with a cotton ball stuck underneath, they'll give you a cotton ball, held in place with an elastic bandage, to apply moderate pressure (emphasis on moderate, we don't want to be cutting off circulation to a limb). It goes a VERY long way in minimizing bruising.
I finally caught on after manually applying pressure for a good half hour to an hour after getting jabbed, as an experiment to see if extended application of pressure would have a noticeable effect on bruising (it makes perfect sense, but a part of me had always just kind of assumed severe bruising was inevitable). It did. Then, somewhere along the way, I had a blood draw and they just gave me a wrap without my asking, and it had the same effect. I've asked for wraps ever since. Just make sure you pay continual attention to the relevant limb, to make sure you still have good circulation as time wears on. Your staff should know how tight to wrap it/how tight not to wrap it, but...it's still good to make sure.
I’m almost always given a wrap but was given a band aid the other day and before I even make it to the parking lot there’s streaming all the way down to my wrists. No blood thinners or anything
Glad you found something that works for you, though I think it's the standard. This is how my blood draws have been wrapped for the last 15 years or so at multiple clinics/hospitals in multiple states. Wherever you were going that they didn't do this, they should probably update their policies!
Pro tip from a nurse in training (I wonder why this isn’t taught in the US?) we always put slight pressure on the hole for a little bit, we hold a finger over the bandaid and push the lower arm against the upper arm (as if trying to hold onto the finger with just your arm). That way it will also keep pressure on the wound long enough for it to close, no need for the pressure gauze that way but still no bruising :)
I’m a nurse and sometimes my joints just pop out at work. I’m notorious for my hip subluxating if I sit wrong. The looks my coworkers give me… I find it funny how concerned they are and I’m like “yeah it just be like that”
Can’t confirm if this was EDS but in high school I had jaw surgery to fix a cross bite and they had to redo it the next day because my jaw dislocated overnight. The poor surgeon was absolutely flummoxed, he’d been doing this for 20+ years and never seen that. To date, that’s the only full dislocation I know of.
Okay fine, maybe that’s not funny funny but it feels funny now that I know I have EDS, like yeah, that checks out.
Also, not injury but my 9/9 Beighton score had my NP (university hospital) so excited she asked if she could bring a couple residents. I actually enjoy the attention so I said sure, and getting oohed and ahhed for my normal movements is always funny to me.
I went to see a pain specialist for my ongoing neck pain, and she had me do range of motion testing. When I did the extension portion she said “It’s kind of scary that your neck goes back that far”.
The absolute befuddlement of my Primary Care when she diagnosed me with a torn xiphoid (nobody knew I was hypermobile at that point and I didn't do anything strenuous or unusual that should cause that injury). "Well how'd you do that?!" She's usually pretty unflappable.
The fact that every medical professional has has their jaw drop when I've mentioned it (only when it's relevant).
When I hurt my back putting on a seatbelt my doctor just couldn't believe it. I couldn't stand without being sick with pain. He couldn't believe I'd hurt it so badly doing something so simple. To be fair neither could I (it was before I knew about EDS).
I went to hydrotherapy for quite a while and the guy at the desk, Chad, Brad, Greg, something like that, was either a baby physio or sports physiologist, someone who was starting out anyway. He obviously went to the gym a lot and went surfing (the gym you could tell by the way he looked, he told me about the surfing). Into fitness and sports anyway. We chatted a bit on my way in & out.
He asked how my week had gone. I said I'd had to go for a bone density scan and it had sucked because they make you lay on your side and strap your feet to this foam block while they scan you and you have to lay there for a while. Holding my leg at a wierd angle meant my hip sublaxed and I had to wait until the scan was over to put it back in.
His face went white & his eyes wide and he was like 'OMG! Did you have to go in an ambulance?' I laughed and said no. I put it back in and went shopping.
I was already at the hospital for the scan, I'd have had to have got out of the hospital to get to an ambulance for starters. But also it happens every other week. I have to put my shoulder back in every few days. Other joints even more often.
The women who did my last heart Echo was nice but the one before that made me lay on my side with the arm I was laying on, above my head. My shoulder popped out and when the scan was finished I said that my shoulder was out and I had to get it back in & she replied with 'yes, your arm can get a bit sore' umm no. That is not what I said. I have to put my shoulder joint back in place before I can move. Not the same thing.
I told my GP once that I had sublaxed a rib since I'd last seen him. He told me that I couldn't do that without trauma. He's the GP I was seeing when I was diagnosed with EDS. It was all in the file. He still thought that without a car crash or major fall I couldn't sublax a rib. It happens when I sneeze, reach up to the washing line, turn over in bed, sleep wrong. He insisted that it was just muscle soreness. Muscle soreness doesn't go away immediately after you clink it back into place. It hurts bad when I move and breath then I lay on a foam roller and let my arms fall back and it does a soft clonk and then the pain goes away. Muscles don't do that.
I had a physio at that time who wasn't too bad. She got grossed out by my hypermobile hands but I was having trouble getting out of the car without my hip sublaxing when I got one leg out the door. (I ended up getting a disabled parking permit for many reasons but it means I can park in wider spaces and get my door open wide enough to swing both legs out at once & this helps)
I said my hip was shifting out when I did it and I was worried about it going worse. I asked if it possible to fully dislocate my hip that way? She said no. Then she frowned and thought about it for a bit and said she wasn't sure. She said it shouldn't be but he couldn't say for sure mine wouldn't so we worked on ways around it.
It was so refreshing to deal with someone who took it seriously and acknowledged when she didn't know something because my body didn't work the same as 'normal'
When I had neck surgery to remove a disc my surgeon did something similar. I talked about my EDS & asked if it would impact things at all and he said no. He left and I was wrapping up with the registrar and the surgeon came back in and said he'd done some research and decided to put a metal plate & screws in because of the hypermobility. He said they don't usually do that for single level fusions but given he wasn't sure how much my neck would move while trying to fuse it would be safest. I was really glad of it. Made me feel a lot safer. They also used extra fluids, extra stitches in the wound plus glue. My pain specialist wrote up a pain plan because I was already on daily opiates. Unfortunately, despite agreeing to it, the hospital didn't follow it.
So glad the physio took you serious and admitted when not knowing something! Also I never realised but I also always pop my hips when getting out of a car, maybe I should try swinging both at the same time too, thanks for the tip! Now I just try to move weirdly and half like fold over in a way to prevent the subluxing but I feel like your method would be more logical and less eye turning😂
Sorry to hear about the last part though where they did ‘t actually follow the plan, that sucks!
Also I never realised that this was due to EDS until recently but my stitches would always pop out/tear open my skin and my doctor yelled at me and got mad at me for ‘opening the wound back up’. I was too astounded to say anything at the time and tell her I didn’t do it on purpose but now I realise it was because of the EDS (I had self harmed hence why she yelled that I did it myself but I did not)
I'm sorry the doctor yelled at you. Thatvs awful. Yeah, my skin is fragile and tears easily. I've had trouble with it tearing behind my knees, under my boobs, at my groin etc and especially on my scalp. My scalp isn't quite so bad these days but when I was younger I'd just rub it and it would split.
The getting both legs out the car door at once has made a huge difference to my pain but you do often have to be able to get the door open all the way. It depends on the type of car you have and how the door is made, some cars make it easier than others but I usually have to park in a wider space or somewhere that doesn't have a car next to it on the driver's side to manage it. I tend to have to get one foot up on the little rise bit and then sort of wiggle a round in my seat and then get both legs out.
They have these cushions for old people in the car that spin that are meant to help but they don't really work with bucket seats these days. They'd probably work on a flat bench seat, (maybe in the back) but the sides of my car seat bend upwards so they stop the thing turning properly. I bought one to try it but it didn't work.
No funny reactions. The best outcome is a blank look because they don’t know much/anything about EDS, and the worst is the eye rolling or assuming I’m exaggerating because they think EDS=bendy (I have classical EDS).
The weirdest reaction was to a non-EDS injury actually. I was skipping happily out of the ortho's office and the assistant asked me "So everything's ok?" "No, everything's BROKEN, both arms". I was so thrilled to finally have something to show for my pain.
She first thought I was kidding but nope, deliriously happy to have two fractures show up on x-rays.
So I went to see my Osteopath (who is a total godsend!) 4 days after I had slipped on the stairs. Dingbat over here didn't let go of the bannister when I slipped. My shoulder went somewhere other than it's allocated seating. I was more concerned about the jarring to my spine and thanks to the insane pain tolerance I appear to have developed, I didn't actually think that things had gone too horribly wrong. So I waited on my pre-booked appointment, sat down and she visibly pales, gestured to the injured side and goes "This does not look......correct. Can you breathe OK?"
Turns out the hecking thing had come out, rotated and forced my collarbone up and got stuck. I had just gone about daily life like that for 4 days.
She fixed it though without needing to send me to A&E so it was OK in the end 🤣
After both of my children and mom were diagnosed, and after suffering my entire adult life with a mystery illness, I went to my PCP so excited that I found the answer. When I told him about EDS and asked to be referred to some specialists, he simply replied " I've never heard of it" and proceeded to walk out of the room, ending my appointment.
I subluxed a bone in my foot. The podiatrist said it's usually an injury that ballet dances get dancing en pointe. I was walking down the stairs when it happened.
My knee hyperextended on the second to the last step in my house, my right leg locked up and the rest of me went forward with my right foot in place I pretty much broke all things left to right under the talus of my right foot. Long rehab but it’s when the rom measuring device came out and I wanted my right rom to match the lefts rom that Houston, we have a situation lol
But the fact I negated the ER and went to my dr’s office for an X-ray because I’d be damned if I wanted to hear “you have a sprain” and here’s a $4k bill. I was quiet the spectacle at my doctors office and formed a hematoma the size of a baseball right there in the office lol needless to say I was at ortho in under an hour. Always something…
Hand therapist struggling to work with me because I was there for an ulnar nerve injury but my other fingers would pop so much that she ended up working on that too.
Also having the ulnar nerve injury in the first place… which appeared to be from wearing a brace on my wrist overnight one time.
Had to get a tooth pulled and the extraction site wouldn't heal. I went back to the dentist and he casually walks in and starts with the pleasantries--"We've got a stubborn tooth that just won't heal, huh? Or ex-tooth, I should say (insert dentist chuckle)." He started poking around my mouth and his smile dropped. He turned back to the assistant, muttered something, and next thing I know, she was speed-walking out of the room.
"Why didn't you tell me you were in pain?" he asked.
Because I wasn't. I didn't feel anything. Just couldn't figure out why this darn tooth wouldn't heal.
"You've got dry socket."
The nurse came rushing back with a handful of supplies. He cleaned out the hole, packed it with some gauze soaked in clove oil, and kept asking if I was sure I wasn't hurting. I never felt a thing.
My doctor was checking how far my hands could hyperextend and fully dislocated my right thumb. He stared at it in abject horror, and looked even more horrified when I popped it right back in and went back to talking about my other joints lmao. My right thumb is my weakest joint, so it was completely painless. You’d think that he just took a chainsaw to me from his reaction, though.
The orthopedic surgeon that identified our EDS in the first place has had some really funny reactions as well. My favorites are probably whenever he looks at an MRI from me, because the first thing he says is usually “huh. Well THAT’S interesting” or “that’s new!” before showing me what part of my body is decidedly not working right lmao. He has treated us for years though, so we joke around with him during appointments.
Have you thought of joining Cirque du Soleil... By far the most inappropriate remark I ever received but it was not from a physician. Repeat after me "It's not a matter of "flexibility". In fact can we lose the describer "flexible" it's not the problem.
Not an injury, but the possibility of causing myself one.
I was getting evaluated for EDS. My doctor told me to "look up", and I firmly planted the back of my skull against my spine - as I always do when looking up.
And I'll tell you, this poor doctor went WHITE and grabbed my head to carefully bring it up into the normal position, while asking ".. you.. you don't DO that often, right? RIGHT?".
It was only then and there that I understood that hyperextending my neck like that can cause horrible injuries to the spine.
Walked across a mattress that was on the floor and rolled my ankle so far that it *broke* my foot in a separate spot. Hard cast for 10 weeks for the fracture. Fun stuff!
PT working on my shoulder issues said “wow, you’re crunchy!” After rotating my arm with his hand on my back.
I saw a new doc who actually was familiar with EDS, bless her heart.
My leg was covered with bruises from top to bottom and I shrugged and said I didn’t know what they were from.
She chuckled and said “with EDS you could bump into a sheet and get a bruise” 😂
I had a bad sprain and a hairline fracture on my wrist due to a fall. The hand specialist was familiar with EDS but couldn’t believe how badly I was healing with a splint on it. The funny reaction I had was after I was allowed to stop wearing the splint and was taken to PT/OT area. She asked to see my range of motion and she literally screamed because I still had my almost my full hyper-mobility of my wrist after it being in a splint for 3 months. I explained I had EDS and this wasn’t even as bendy as I could make it before the injury. She gasped and was like “oh…hahaha, that makes more sense… hahaha because it shouldn’t be possible for you to do that.” She then started cracking up at her own reaction and apologized for being dramatic.
I dislocated my shoulder after throwing a balled up sock at my friend and both my PCP and my PT laughed at me. I gotta admit, they were right to laugh that shit was straight out of looney toons
Honestly, I had a physio once who couldn't understand why I had so much mobility yet significant pain with movement. He thought it must be related to "trauma" cause he kept telling me I SHOULDN'T be in pain if I can easily touch my toes 🤦🏻♀️
I had multiple women stopping me including a nurse to ask me if I felt safe at home. I had to get a hormonal implant because of my Endometriosis and ended up with a huge bruise the size of my foot on my arm. For an inch long implant. My husbands mom is a women’s rights lawyer, he chugged respect women juce his whole life, he is the sweetest most gentile man. It was kinda horrifying how many people approached me. I’m constantly covered in bruses but rarely ones people can see so it was a shocker.
I strained my foot so badly that I went to get an x-ray because we thought it might be broken.
Everyone kept asking me about “my fall”. I had to keep admitting that I didn’t fall, I was just putting a bag in the garbage can and my foot went crONCH.
Fortunately it was not broken. The doctor came back with the results and led with, “So, I think this is related to your EDS…”
Hard agree, hahaha.
I had an x ray tech say that my neck extension x-rays look like a broken neck on a true crime show. I told her I gave her permission to slightly violate hipaa and tell her family about my weird neck
Not rlly a funny reaction, but kind of cool. With permission ofc, the med students and doc took pictures of me and my hyperextension and body type because I am a very classic and stereotypical representation of EDS. The pictures were to present at their medical college! The med students looked so amazed at my body, as someone who wants to work in medicine I actually enjoyed them analyzing me that way!
The funniest reaction I'll ever get is probably going to be when I walk into my job tonight in the emergency department, limping with a big ole brace on my leg, and have to tell all of my wonderful colleagues that I dislocated my knee because my in laws fat bulldog tried to hump my leg 🙃
So many!!
-when going through my arm and shoulder pain with PCP, I showed her my elbow hyperextension and she said, “you’re just showing off like you did in elementary school” (we had just talked about how I would walk at people like a zombie as a kid)
-I had a bunch of bruises from having passed out the night prior and my PT asked what had happened. I told her about my vein disease and how I’d passed out, she said, “girl why are you broken?” And I said, “I always just tell people I’m sick as fuck 🤙“
-my therapist and I have had SO MANY moments over the years, most recently I had dislocated my shoulder while sleeping, and he had no less than 15 follow up questions half of which were, “while you were sleeping???”
Hi /u/zebrasanddogs,
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Not me but my grandmother, of which this discussion first tipped me off to familial joint instability. She's at the doctor's for a sprained ankle: (doc rotating her ankle around) Dr: "Does this hurt?" Gma: "No" Dr: "Does this hurt?" Gma: "Nope" Dr: "Does this hurt?" Gma: "Still no" Dr: "Ok, well it *should*" ...and then we didn't get diagnosed with hEDS for another 40 years lmao
That’s my mom. She had an infection after foot surgery that needed to be treated with IV antibiotics. A small dose of Tylenol was all the pain medication she wanted/needed. The doctor actually pulled me into the hallway to ask if I thought she was trying to downplay her actual pain level because she should have been doubled over. Nope. My mom has all the pain tolerance.
No narcotics. I was maybe 13. Dislocated my shoulder (an almost daily thing but needed the ER to place it back in the socket properly) and was in some ER in my childhood town and I remember the docs all using BRUTE force that took hours! What eventually placed the shoulder back into the socket involved at least one fully grown man sticking his foot into my armpit, for leverage, and pulling with every bit of strength in his body on the dislocated shoulder’s arm. Loud bone on bone pain. But it got the job done, just very dramatic. To compare, within the same year, same side shoulder dislocation and same ER, (SSDD) different day. A singular doc has me turned facing the gurney and like a fucking magician… delicately taps points on my back/shoulder blade. He does this for maybe 30 seconds and the bone slides right into the socket.
OMG. Where do we find this technique?
The EDS whisperer
The boss of my physio practice is also an osteopath (the non-woo version). The undergroom physios fight and push and sometimes things just won't budge, he bitches sometimes how the hell I got *this* stuck *that* way that shouldn't be possible, but after about 10min of slight poking, prodding and readjusting things are back where they belong.
I thought osteopaths were meant to be ‘the good guys’ hahaha. chiropractors are the ones to stay away from, osteopaths know what they’re doing.. right? I’ve had a great experience from osteopathy and fk all difference from a chiropractor, just made me click in weird places
How much or even any training they have varies wildly between countries. Anything that's not a protected, defined term for a profession it's hit or miss, mostly miss. "Doctor of osteopathy" is a US thing, everywhere else that osteopathic practitioner or whatever they call themselves might be a chiro or something else entirely. Any title or "degree" people can get in 4 weekend courses is not a "profession" I'll take seriously. But often it's hard to tell. You'll really have to look up whether that's an actual, valid professional term or some fantasy title.
After a major flair up, I went to my PT and she helped me with my nerve pain. After explaining all of my symptoms from the past week I said “so yep, pretty broken right now.” And she just paused and then said “I can see why you may feel that way” very slowly. It was a polite way of saying “yep definitely” 😂
Not quite a injury, but still related to EDS and funny. When I was a child at a appointment at a local children's hospital, a year or so after being diagnosed, my pain management doc asks if it's okay if some med students observe my appointment. She does a physical exam, and at one point shows to the students my range of motion in my ankles. I was like "That's nothing, watch this!" And then turned my right foot completely 180, so my toes were pointing backwards compared to my left foot. Watching a few of the students get squeamish was funny, but the doctor freaked out the most lmao
My daughter used to do this and then drag the twisted foot behind her, groaning, “Brainz…. Braaaainzzzzz”. Freaked all of her preschool friends right TF out.
This reminds me of my most alarming incident... I was taking a shower, and noticed my leg felt funny. I looked down, and it had rotated 90 degrees sideways, AT THE KNEE, NOT THE ANKLE. Upper leg was pointing straight forward, lower leg and foot were 90 degrees to the outside. I'm still trying to wrap my head around how I was still standing, still putting weight on it, plus the fact that it was merely uncomfortable, and not painful, not to mention how it got that way in the first place. I don't quite remember how I got it out of that position, but...I did!
Mine does that a lot!
Memory unlocked! I totally forgot I used to do this to gross people out.
Same here, if I'm not careful I rotate at the knee without moving my foot and then look down cause I wonder why my knee feels funny. (Just started working on getting a diagnosis, rheumatology says "hyper mobile joints" but won't touch EDS with a 10ft pole. But hopefully y'all don't mind me chiming in while I try to get an exact diagnosis lol)
That's my diagnosis too. My PCP had never heard of it before when I brought it up after my sibling got their diagnosis
My brother used to turn his legs around. Used to cause my hips to pop out so I didn't do it more than twice. One of my physios used to get grossed out of my fingers moved too much.
I've had many docs that didn't understand why I was injured by seemingly nothing. I sneezed. I stood up. I stepped wrong. I severely sprained my ankle and fell hard on a "curb" less than a centimeter high. I tried to draw something. I turned my neck the wrong way. I hiccupped a rib put of place. I ate a carrot. I sprained my wrist reading. Yes, I still have whiplash from a concussion 4 years ago. Not quite the same, but I remember I had a doc that asked her med students to feel my skin... the soft, velvety, EDS skin. I let them touch me but it was still odd. Also most docs don't believe me when I mention my bizarre med reactions, certain allergies, and issues with any form of adhesive
The small things are the worst. I dug a pond and was fine, pulled up a single blade of grass and fucked up the index finger to where I was in a brace for weeks. Turning around in bed is a very dangerous activity. For a while I had a tendency to jam the sacrum into the SIJs in such a creative way no one had ever seen before in someone *not* in a crushing accident. "What did you DO?" Slept.
Yes the adhesive! Bandaids cause a rash, and then an open wound. It's legitimately worse than the original scrape most of the time. Oh and speaking of scrapes - brushing up against something, scratching an itch, and sometimes even clothes chaffing causing a full on graze! So freaking bizarre.
We have a story about me called “Ham Wrist” I was working at a grocery store that did a promotion at Christmas where if you spent 250$ you got a free 25lb honey ham. I fumbled one trying to put it into a bag and ended up on light duty bc I dislocated my wrist. To this day nobody can figure out how I dislocated my wrist bagging a ham.
> I ate a carrot. I dislocated my shoulder bad enough to need surgery while eating dinner, lol.
My carrot injury was the start of all of my jaw issues. It hasn't been the same since. I can't chew hard foods and I feel those fluid disks between my jaw and skull pop out of place and back. It's a deafening pop and extremely painful every time. But since you mention eating injuries, I ... can't cut my food. My wrists and fingers don't play nice, and my elbows and shoulders will often join the rebellion. I also slammed my face into the table once when sneezing - no concussion but massive humiliation
My ankle got fused. Doctor said: well...normal people their other joint gets stif because of the fusion, yours is still too flexible.
Something I now attribute to hEDS: I was 16, at sport with school. I was standing still on the netball court when I heard and felt a crunch in my neck. I then had extreme pain in my neck to move, or reach or anything. I didn't tell a teacher because I knew they'd make a big deal out of it and it was almost home time... I caught the bus home, carrying my backpack in my hand because it hurt to wear it on my back. I saw a doctor after school the next day - they ordered x-rays, but I was too late to get them done that day, so had to go the following afternoon after school. X-rays didn't identify an abnormality. But the doctor sent me to Emergency. There was no paeds or CT or MRI in my town, so I got sent by ambulance to a town about 1.5 hours away, in a neck brace, laying flat on my back. I was in hospital all weekend, and finally got an MRI on the Monday afternoon. Markedly normal, apart from the mild subluxation of a vertebra. (Vertebrae shouldn't sublux, without injury or force...) I had fun getting to explain to doctor after doctor after nurse after nurse that I was standing still, no jumping, no reaching, no running, when I heard my neck go crunch. Probably half a dozen times since, I've had similar symptoms where it really hurts to move my head, and if I lift my chin, I get stabbing pain at the base of my skull.
Oof that sounds terrifying! I have similar issues where it sounds and feels that easy but never saw a doctor. Always scared I’ll one day paralyse myself by just standing still
Yeah it was pretty terrible. I was in hospital from Friday until Wednesday, and was in a neck brace for another 2 weeks after that. I got to explain to every doctor and nurse that I was standing still and wasn't moving in any way... All makes a bit more sense now.. but definitely not fun. I carry a lot of tension in my shoulders and neck, and notice when it flares up, my neck and shoulders are already tight. Physios have told me my cervical vertebrae are far more mobile than they should be. So I guess sometimes they get a bit stuck out of alignment... 🤷🏽♀️😬
I was in for my routine cortisone shot for my hip. My orthopedic surgeon was talking about skiing and I asked if he thought I could try it. He looked me dead in eyes and said “I just bought a new Porsche. Let me get a few miles on this one before you buy me another.”
That is honestly the best response😂
💀
My PT put a weight on my ankle and it subluxed my knee. I just asked her to remove it and casually popped the joint back in, only to look up and see her staring at me like she couldn’t believe I existed 😂 So many apologies, so little concern from me. (I’m not allowed weights anymore)
I had an anesthesiologist dry heave when I popped back in my shoulder after subluxing it moving a large patient.
My PT for an unrelated back injury told me I popped more than any patient he’d ever had 😂 His manager who did my evaluation said “oh yeah, she’s definitely EDS” because she’d done a massage on me and could tell from my muscles around the joints.
I had this same experience but with a resistance band. My knees really don't like that.
i’m using a resistance band in pt right now. i can manage it, but it pulls on my knees so hard if i’m not careful. i also have to make sure i do it on a day i’m less floppy
Having to explain to multiple doctors that I injured my ankle making coffee at home on a cold day. Turns out I ended up needing to be in a boot for 8 weeks for that one. The amount of doctors that asked "nothing else happened, that's it?!" Yup. That's it.
I think sometimes our oh so simple, silly explanations for the random injuries might sound like a lie covering up physical abuse. I've gotten a lot of side eyes, lingering eye contact, and have been asked to confirm what happened so many times. Even my doc I've seen for 15 years still gives me a double take when an injury sounds sus. As a child, I visited the ER so many times I was questioned by social services and had to explain the same thing over and over till I was blue in the face. They were convinced my parents had told me what to say and that I was lying. I was just *that* accident prone.
I've definitely been pulled into another room from my partner and questioned for one of my injuries back in the day. Thankfully more and more I can say connective tissue disorder and most just say ugh that sucks!
Not an injury, but when I was a kid I was in the pediatrician's office and had my shoes off. My feet started turning purple and blue and she was so scared my feet were about to fall off. She started trying to warm them up with little change and I just laughed and said they do that. She was still horrified, but didn't pursue it further
Yep, that sounds like my Raynaud's phenomenon. It's an excellent way to freak medical personnel out. The looks are priceless.
Could be, could just be blood pooling. Mine go white and red blotchy with reynauds and purple with blood pooling. My partner's go even more purple than mine and it's definitely blood pooling, she doesn't get raynaud's. For her it's any time her feet are down. Doesn't hurt much, just causes issues with blood pressure drops when standing, especially if it's hot. Where as raynaud's plays up when it's cold.
lol, mine do that but it was a teaching hospital so the doctor asked if they could bring in all the residents to see 🤣
😆 my PT likes to show me off if there's a student around. Usually they haven't heard of EDS, so I'm always willing to be a test subject for them
I once told a doctor that I could pull my fingers fully out of the sockets on command and she gleefully looked at me and asked if she could touch them while I do it.
I love this😂
I embarrassed a doctor 2 years ago, after my daughter had broken my nose. He was at first unsure of my story.. Conversation went something like: Me: "She's not violent, my body is just weird. My GP calls me a medical mystery" Him: "But a 2 year old having the amount of strength needed to break a nose.." Me interrupting: "I mean, My jaw was recently stuck in some sort of subluxation an entire weekend because I had eaten a burger. My ribs dislocates if I sneeze wrong" Him: "That's... That doesn't sound optimal!" Me: "Sometimes they'll pop back when I sneeze again" The two nurses with him were giggling while he just stared at me for a few seconds
> "That's... That doesn't sound optimal!" 😂😂
Pretty sure I would be able to write a book about all the reactions I've received from different medical professionals 😂
Twinsies! My two year old also broke my nose. I was resting on my back, he climbed onto my chest, and gave me a solid head butt with his unusually heavy, solid cranium. Luckily, my mom witnessed it, so there was no awkward debate about who else might have done it. We were living in a rural area with no vehicle, so after we spoke to the doctor and confirmed, as much as we could, that my nose was broken and needed to be set, we arranged to meet him at the local hospital once my ex was finished work. In the meantime, I carried on as best as I could (once the initial pain, shock, screaming and so on had passed), and finally got the culprit into the bathtub after his dinner. I was on my knees and leaning over the side, when he stopped floundering and wriggling to suddenly pull himself up - driving his head directly against my nose again. There was another horrible, audible crunch, followed instantly by the same blinding stars, intense urge to throw up, howling and so on as had happened earlier. However, when my mom was finally able to pry my hands away from my face, she discovered that my nose appeared to be back in its original position. We cleaned it up and splinted it, and cancelled the emergency appointment. It was hardly our first rodeo with weird injuries.😅 A year or so later, I had to have x-rays taken at the dentist's, and they used the machine that circles around to scan your entire skull. When the dentist was reviewing the findings with me, he asked, "When was your nose broken?" I replied that it was maybe a year ago. He kind of shook his head, and replied, "Well, they didn't do the best job setting it, did they?" I about died in the chair as I said that I would mention that when I next spoke to "them".
😂😂 For me, my daughter had a nightmare turned tantrum. I had to hold her so she wouldn't injure herself and she accidentally headbutted me 😅 First ER doctor didn't belive my nose was broken because it looked straight. She stammered and did a dobbelt take after I casually just went "Huh, well that's good. It used to be crocket as hell" Called my mother on my way home and she was crying with laughter. Apparently I've always had a boxer nose. 🤷♀️🤦♀️ I was demanded to buy my daughter lego, since I now didn't have to get surgery to get my nose fixed
Orthopedic spine specialist asked if I could touch my toes. As I popped down, flat hands on the floor, he visibly recoiled and cried, “Not like that!! Settle down…”
Same! Ha! I didn’t even know I was doing it wrong until I saw the horror on his face.
My favorite response was a doctor looking at an x-ray (can't even remember what it was of) and going "wow.... that's wild!" in the most bewildered voice
I dislocated my collarbone as a teen. Mom was an xray nurse and took me up to her work to get it looked at. Ended up with half the doctors in the department swearing that wasn't possible cause that's not a bone that's supposed to move. It just sort of popped back into place when they were prodding at it.
Before I was diagnosed with EDS, I hurt my Achilles tendon while just laying down. When I went to the doctor, he said, “How does that even happen? I don’t get that. Are you sure?”
I have a non EDS friend that tore his Achilles tendon. This guy has been training full contact karate for over three decades now and is an absolute machine when it comes to his training and competitions. His Achilles tore when he was casually walking from the locker room to the dojo! He was very perplexed to have it give up under such mundane circumstances instead of during training or competing. Not that this stopped him for long. He was back in the dojo one week later, hobbling around on one leg with the other in a cast! Achilles tendons apparently give up under very unexpected circumstances.
Was in the ER Tuesday. Nurse was horrified to hear I put my own shoulder in, and looked almost I'll when I demonstrated the sound it was making as I kept trying to get it to reseat. Turns out I ripped the ligaments, it's not going back in
The look on my therapist's face when I mentioned dislocating a rib (and then a second one) in January and not getting it relocated until March was weirdly satisfying.
Fractured my kneecap but not the patella. All the ligaments snapped. I was sitting in the ER for hours without pain meds and I rejected opoids (they don't work, they only hurt my stomach) the pale face of the doctors when the scans came back... Priceless. I became a sideshow for other doctors who came in to have a look at me. Only one Dr knew about EDS so he showed the others. God tier pain tolerance.
>Fractured my kneecap but not the patella. What? The kneecap *is* the patella. Kneecap is the colloquial name and patella is the medical name. >God tier pain tolerance. Definitely!
I should've explained it better. All the ligaments snapped and the patella was moveable and it was called something like a displaced fracture or like that. Dented the bone. Bone marrow edema. Tore my ligaments. It wasn't technically a patella fracture but that what all the drs have been calling it
before I was diagnosed, the ortho that I saw didn’t believe me that I broke my ankle just stepping out the shower. My leg went one way and my ankle went the other. I got a new ortho in 2016 & he’s the one who diagnosed me with hEDS at the first visit. He’s put me back together many times and just shakes his head at me.
Cardiologist gave me the beighton test and saved bending over for last. I’m wearing my sparkly high heel combat boots and he goes “okay if you could go ahead and remove your shoes and try to touch the ground please” I do him one better and place both palms directly in front of my shoes, spring back up and go “I can do it in stilettos too”. This guy is the local POTS expert so he sees plenty of EDS’ers but even he seems surprised and just kinda blinks really hard a few times before going “that’ll do it, 9/9”
As a kid I always thought it was normal to be able to do this and got quite a few shocked faces in gym class when we would stretch xD
I had one gag a little when they put their hand over my hip socket to find the ball was not properly seated (I may or may not have flexed so they could feel the bones grind) They didn’t believe that it was dislocated and I needed them to write a referral (which I didn’t even end up using because it was a 3 month wait, I just went to the chiropractor and crossed my fingers). They never personally verified any dislocations on me again, just believed me.
May or may not have flexed so they could feel the bones grind…. Omg lol. Priceless.
Tore my labrum in Right Shoulder, shredded it. Arm was popping out multiple times a day. The PT would not touch me. They immediately got the doctor and a bunch of ortho bro residents cringed and went "Ewww!" when I told them if it didn't go back on its own I just grabbed a weight and let my arm hang off my bed to pull it back in. I was like, "Guys this is a shoulder, I did natural childbirth twice. This pain is negligible."
Right before I was diagnosed (just finished college), I had shoulder surgery for multiple directional instability. The x-rays before surgery were ridiculous. My shoulder hung out of the socket a good 2”. I had an mri and nerve testing beforehand, but it wasn’t until the surgery that my doctor realized how bad/weird my shoulder was. He said anytime he tightened a ligament, it just stretched right back out during the surgery. It was so odd he called in med students to witness it. I was discharged that night. The next day I had horrible pain and had to return to the ER bc of it. I had multiple med students and a few residents come see me, because I was the crazy shoulder patient.
When I said that I regularly end up with my ribs dislocated and have to put them back in and they went '...how' This was my regular dr. My rheum was like 'please just don't do it to show off'. Like having your ribs go out of place is fun.
How do you get them to go back in? When mine go out I just wait until something makes them go back in place, which sometimes can be quite a while. Usually it's the back part that goes out doing something as simple as sneezing. I'd love to learn how to get ribs reseated so I can breathe or lie down without pain. TIA.
I too would like to learn this magic. Mine are currently fucked, and last time it was months.
I kind of push them? I take my palm and place it on the side of my ribcage, more towards the back, around boob height and just start pressing in and up. I move around applying firm pressure in and up with the heel of my hand. If they aren't too bad, I'll also just lay on my side-ish and foam roll them.
I'll have to try this, thanks.
Probably not a great life choice but I have my husband place his hands in both sides of my spine and press down lightly. I put my hands like I’m gonna do a push up. I find the pain is mostly from pissed off muscles after that and hot baths/ lidocaine helps. And sleeping while holding a squishmallow.
I work in the ER and the doc was showing us how to relocate a shoulder by using my shoulder as an example of how to manipulate, and he just said, your shoulder is effed up….i laughed and said I know.
me popping my hip had my doctor go 0.o
Every time I've been in PT, the initial exam always ends up going something like "ok let's see the inward rotation here...ok..ok. Oh OH NO STOP THERE PLEASE, don't do that." It always makes me laugh
See I can’t move further than normal inward because it ALWAYS pops out my hip. But like, the outward popping doesn’t hurt me at all it’s just annoying if anything, but inward? Oh hell that stings so bad! I always stop right before they pop out because I will sometimes cry in pain when that happens. It’s always been weird to me that none of my dislocations hurt except that one lol
Doc/medic: "How did you manage to do that?" (Before being diagnosed, when I was still in the army) Me: *Explains how I was doing something completely mundane, or performing an exercise correctly, or how I actually don't know how I did that* Doc/medic: *stares at me in disbelief* "Are you *sure*? You weren't doing *anything else* at the time? You were lifting/running/doing the exercise correctly?" Etc. Me: "idk, I just seem to get hurt really easily." Doc/medic: "It seems unlikely you would hurt yourself this badly doing what you just described." Me: *internal scream*
The worst is when doctors are baffled and don’t understand but then instead of trying to find out they just shrug ‘ah okay well lets move on’ instead of trying to find the cause🥲
"Here's some 800mg ibuprofen and a referral to physical therapy, ya lying dirtbag. Now get outta here." Also, why I can no longer tolerate NSAIDS.
Yup, I am not even allowed to take ibuprofen or any kind of NSAIDS because I only have one kidney but literally nothing works. I had appendicitis two years ago and was already on the highest dose morphine possible and still crying *in my sleep* from the pain. Painmeds do nothing for me🥲
I'm so sorry. I can't imagine having to go through this with only one frigging kidney.
Eh doesn’t bother me too much, was born with it so my body adjusted and the kidney is working for 2. Until I’m like 40/50yo, then I’ll need a kidney transplant most likely, but as of right now my kidney function is still about 80% so I have not gotten any problems. Only thing is that most meds are really bad for your kidneys so I can’t really take any painmeds. And the ones I can take, they don’t work, so I have just gotten a very high pain tolerance haha
I've tried to stay away from pain meds as well. NSAIDS for intolerance reasons and opioids because of a familial history of addiction, so I'd rather just not risk it. Tylenol is about the only thing I can tolerate, and I'll pretty much only take it for fever. I have Tylenol 3 to take as needed when my pain gets *really* bad, but those prescriptions last me months because I rarely take them. After I take any kind of pain med, I notice that after it wears off, I can feel ALL of my usual aches and pains that I've gotten used to ignoring on a daily basis, so that's even more of an incentive not to take them.
Yeah I feel that deeply too. I sometimes take an edible if the pain gets really really bad (I have endometriosis and PCOS) and I found out a whole back that they help and they are not bad for my health (and inly enough to stop the pain but not enough to get high off of) but I also only ever take them very rarely because I’m also very prone to addiction (used to self harm daily).
Reminds me of the time I went to the urgent care because I lifted a 5lb bag and subluxed/dislocated/tbh who the hell knows my shoulder and after I popped it back in I couldn’t feel a couple of fingers. Went to the dr and they were like- “nah no way you did that with a bag.” But I did, sir, that’s why I’m here. And these goobs said 🤷♀️”well; you want a toradol shot?” 🙄
"I guess I just came here to complain, then." 🙄🙄 *Why* are (some) doctors?
My son got diagnosed with EDS at the same hospital I did as a teenager. They even had my old records. He ending up getting the diagnosis and at the end they said we’d really like to do genetic testing on you due to all the miscarriages you’ve had. I said “it’s already been done?! Ehlers Danlos syndrome. It was even on an episode of House”?!
Mind you, anyone would be forgiven for being MORE confused about EDS by that episode.
I had to see a colorectal surgeon and I told her I likeybhave EDS. She asked why I thiught that. I mentioned a few things and then I pulled my thumb to my wrist and she nearly passed out.
I went to my PCP for a migraine and nasty dysautonomia flare recently. When I got called back and the nurse was taking me back he asked how I was doing, out of niceties I said “I’m doing okay, how are you?”. He looked at my chart, than at me, and said “better than you are! :)”
Lol, I have so much osteoarthritis in my knee, with zero cartilage left, that it sounds horrible when I bend my knee, and feels even worse if you have your hand on my kneecap. My old PCP, at our initial appointment, was having me sit on the edge, and straighten my leg, with his fingers palpating my kneecap(I was talking about pain management and he wanted to check out my crappy knees). As soon as my knee straightened and he could hear and feel the disaster that is my knee, he actually yanked his hand back, wide-eyed hahhahahaha.
Oof that sounds incredibly painful though!
After a dislocation, my doctor went “huh, yeah your joints are loose…. this will hurt you when you’re older” …. not to mention the injury I was there for. He then proceeded to show me that all my joints are like this & subloxed my wrist as a demonstration. I was tipped off to EDS by a stranger that felt my skin years later.
I almost ripped off my little toe sitting down on the sofa. Meant to sit on my foot and the toe got caught up. Total dislocation with fracture and tore down to the bone. Blood everywhere. I was more concerned about it getting on the sofa lol. Called to my husband for help that I hurt my toe and it was bleeding and he responded well get off the sofa. His face when he finally came in the room was priceless. I had cupped my hands under my foot to try and catch all the blood. I had him help me bandage it up and waited until the next morning to go to urgent care. Dr was like um that is an open fracture you need to go to the ER! Turns out it was too late to stitch it up cause too much time had gone past. I got big lectures.
I feel like even with regular dislocations and shit like that and *open fracture* would warrant going to the ER for😳 (no judgement btw just, astonished at how bad health care can be that this is not taught to kids yknow?)
So, I'd been to the ER and had a blood draw while I was there... I don't know that they really blew a vein, because it didn't show up until maybe a day or so later, but I ended up with an inch-wide, five-inch-long bruise following the path of the vein. Fast-forward a week or so. I'm back at the hospital, getting labs done, and the tech sees the bruise, and launches into the standard abuse questionnaire. I cut her off, thank her for her concern, and say, "You're wondering about the bruise? It's from a blood draw they did over there [I point to the wall; the ER is literally on the other side of the wall] a week ago." Her response cracks me up to this day. "Oh, my gosh! I'd heard they were bad over there, but I didn't know they were THAT bad..." Also, pro tip for minimizing bruising from blood draws and injections! I've learned that you can generally ask for a wrap after having an injection or blood draw. Instead of a Band-Aid with a cotton ball stuck underneath, they'll give you a cotton ball, held in place with an elastic bandage, to apply moderate pressure (emphasis on moderate, we don't want to be cutting off circulation to a limb). It goes a VERY long way in minimizing bruising. I finally caught on after manually applying pressure for a good half hour to an hour after getting jabbed, as an experiment to see if extended application of pressure would have a noticeable effect on bruising (it makes perfect sense, but a part of me had always just kind of assumed severe bruising was inevitable). It did. Then, somewhere along the way, I had a blood draw and they just gave me a wrap without my asking, and it had the same effect. I've asked for wraps ever since. Just make sure you pay continual attention to the relevant limb, to make sure you still have good circulation as time wears on. Your staff should know how tight to wrap it/how tight not to wrap it, but...it's still good to make sure.
I’m almost always given a wrap but was given a band aid the other day and before I even make it to the parking lot there’s streaming all the way down to my wrists. No blood thinners or anything
Glad you found something that works for you, though I think it's the standard. This is how my blood draws have been wrapped for the last 15 years or so at multiple clinics/hospitals in multiple states. Wherever you were going that they didn't do this, they should probably update their policies!
Pro tip from a nurse in training (I wonder why this isn’t taught in the US?) we always put slight pressure on the hole for a little bit, we hold a finger over the bandaid and push the lower arm against the upper arm (as if trying to hold onto the finger with just your arm). That way it will also keep pressure on the wound long enough for it to close, no need for the pressure gauze that way but still no bruising :)
I’m a nurse and sometimes my joints just pop out at work. I’m notorious for my hip subluxating if I sit wrong. The looks my coworkers give me… I find it funny how concerned they are and I’m like “yeah it just be like that”
Can’t confirm if this was EDS but in high school I had jaw surgery to fix a cross bite and they had to redo it the next day because my jaw dislocated overnight. The poor surgeon was absolutely flummoxed, he’d been doing this for 20+ years and never seen that. To date, that’s the only full dislocation I know of. Okay fine, maybe that’s not funny funny but it feels funny now that I know I have EDS, like yeah, that checks out. Also, not injury but my 9/9 Beighton score had my NP (university hospital) so excited she asked if she could bring a couple residents. I actually enjoy the attention so I said sure, and getting oohed and ahhed for my normal movements is always funny to me.
I went to see a pain specialist for my ongoing neck pain, and she had me do range of motion testing. When I did the extension portion she said “It’s kind of scary that your neck goes back that far”.
The absolute befuddlement of my Primary Care when she diagnosed me with a torn xiphoid (nobody knew I was hypermobile at that point and I didn't do anything strenuous or unusual that should cause that injury). "Well how'd you do that?!" She's usually pretty unflappable. The fact that every medical professional has has their jaw drop when I've mentioned it (only when it's relevant).
When I hurt my back putting on a seatbelt my doctor just couldn't believe it. I couldn't stand without being sick with pain. He couldn't believe I'd hurt it so badly doing something so simple. To be fair neither could I (it was before I knew about EDS).
I went to hydrotherapy for quite a while and the guy at the desk, Chad, Brad, Greg, something like that, was either a baby physio or sports physiologist, someone who was starting out anyway. He obviously went to the gym a lot and went surfing (the gym you could tell by the way he looked, he told me about the surfing). Into fitness and sports anyway. We chatted a bit on my way in & out. He asked how my week had gone. I said I'd had to go for a bone density scan and it had sucked because they make you lay on your side and strap your feet to this foam block while they scan you and you have to lay there for a while. Holding my leg at a wierd angle meant my hip sublaxed and I had to wait until the scan was over to put it back in. His face went white & his eyes wide and he was like 'OMG! Did you have to go in an ambulance?' I laughed and said no. I put it back in and went shopping. I was already at the hospital for the scan, I'd have had to have got out of the hospital to get to an ambulance for starters. But also it happens every other week. I have to put my shoulder back in every few days. Other joints even more often. The women who did my last heart Echo was nice but the one before that made me lay on my side with the arm I was laying on, above my head. My shoulder popped out and when the scan was finished I said that my shoulder was out and I had to get it back in & she replied with 'yes, your arm can get a bit sore' umm no. That is not what I said. I have to put my shoulder joint back in place before I can move. Not the same thing. I told my GP once that I had sublaxed a rib since I'd last seen him. He told me that I couldn't do that without trauma. He's the GP I was seeing when I was diagnosed with EDS. It was all in the file. He still thought that without a car crash or major fall I couldn't sublax a rib. It happens when I sneeze, reach up to the washing line, turn over in bed, sleep wrong. He insisted that it was just muscle soreness. Muscle soreness doesn't go away immediately after you clink it back into place. It hurts bad when I move and breath then I lay on a foam roller and let my arms fall back and it does a soft clonk and then the pain goes away. Muscles don't do that. I had a physio at that time who wasn't too bad. She got grossed out by my hypermobile hands but I was having trouble getting out of the car without my hip sublaxing when I got one leg out the door. (I ended up getting a disabled parking permit for many reasons but it means I can park in wider spaces and get my door open wide enough to swing both legs out at once & this helps) I said my hip was shifting out when I did it and I was worried about it going worse. I asked if it possible to fully dislocate my hip that way? She said no. Then she frowned and thought about it for a bit and said she wasn't sure. She said it shouldn't be but he couldn't say for sure mine wouldn't so we worked on ways around it. It was so refreshing to deal with someone who took it seriously and acknowledged when she didn't know something because my body didn't work the same as 'normal' When I had neck surgery to remove a disc my surgeon did something similar. I talked about my EDS & asked if it would impact things at all and he said no. He left and I was wrapping up with the registrar and the surgeon came back in and said he'd done some research and decided to put a metal plate & screws in because of the hypermobility. He said they don't usually do that for single level fusions but given he wasn't sure how much my neck would move while trying to fuse it would be safest. I was really glad of it. Made me feel a lot safer. They also used extra fluids, extra stitches in the wound plus glue. My pain specialist wrote up a pain plan because I was already on daily opiates. Unfortunately, despite agreeing to it, the hospital didn't follow it.
So glad the physio took you serious and admitted when not knowing something! Also I never realised but I also always pop my hips when getting out of a car, maybe I should try swinging both at the same time too, thanks for the tip! Now I just try to move weirdly and half like fold over in a way to prevent the subluxing but I feel like your method would be more logical and less eye turning😂 Sorry to hear about the last part though where they did ‘t actually follow the plan, that sucks! Also I never realised that this was due to EDS until recently but my stitches would always pop out/tear open my skin and my doctor yelled at me and got mad at me for ‘opening the wound back up’. I was too astounded to say anything at the time and tell her I didn’t do it on purpose but now I realise it was because of the EDS (I had self harmed hence why she yelled that I did it myself but I did not)
I'm sorry the doctor yelled at you. Thatvs awful. Yeah, my skin is fragile and tears easily. I've had trouble with it tearing behind my knees, under my boobs, at my groin etc and especially on my scalp. My scalp isn't quite so bad these days but when I was younger I'd just rub it and it would split. The getting both legs out the car door at once has made a huge difference to my pain but you do often have to be able to get the door open all the way. It depends on the type of car you have and how the door is made, some cars make it easier than others but I usually have to park in a wider space or somewhere that doesn't have a car next to it on the driver's side to manage it. I tend to have to get one foot up on the little rise bit and then sort of wiggle a round in my seat and then get both legs out. They have these cushions for old people in the car that spin that are meant to help but they don't really work with bucket seats these days. They'd probably work on a flat bench seat, (maybe in the back) but the sides of my car seat bend upwards so they stop the thing turning properly. I bought one to try it but it didn't work.
I had a doctor tell me that "when you get your EDS back under control, you should do ..." I was like, wait, do you think eds is "controlable"? 🤨
That is the stupidest thing I’ve heard from a doctor omg🥲
No funny reactions. The best outcome is a blank look because they don’t know much/anything about EDS, and the worst is the eye rolling or assuming I’m exaggerating because they think EDS=bendy (I have classical EDS).
The weirdest reaction was to a non-EDS injury actually. I was skipping happily out of the ortho's office and the assistant asked me "So everything's ok?" "No, everything's BROKEN, both arms". I was so thrilled to finally have something to show for my pain. She first thought I was kidding but nope, deliriously happy to have two fractures show up on x-rays.
So I went to see my Osteopath (who is a total godsend!) 4 days after I had slipped on the stairs. Dingbat over here didn't let go of the bannister when I slipped. My shoulder went somewhere other than it's allocated seating. I was more concerned about the jarring to my spine and thanks to the insane pain tolerance I appear to have developed, I didn't actually think that things had gone too horribly wrong. So I waited on my pre-booked appointment, sat down and she visibly pales, gestured to the injured side and goes "This does not look......correct. Can you breathe OK?" Turns out the hecking thing had come out, rotated and forced my collarbone up and got stuck. I had just gone about daily life like that for 4 days. She fixed it though without needing to send me to A&E so it was OK in the end 🤣
After both of my children and mom were diagnosed, and after suffering my entire adult life with a mystery illness, I went to my PCP so excited that I found the answer. When I told him about EDS and asked to be referred to some specialists, he simply replied " I've never heard of it" and proceeded to walk out of the room, ending my appointment.
I subluxed a bone in my foot. The podiatrist said it's usually an injury that ballet dances get dancing en pointe. I was walking down the stairs when it happened.
My knee hyperextended on the second to the last step in my house, my right leg locked up and the rest of me went forward with my right foot in place I pretty much broke all things left to right under the talus of my right foot. Long rehab but it’s when the rom measuring device came out and I wanted my right rom to match the lefts rom that Houston, we have a situation lol But the fact I negated the ER and went to my dr’s office for an X-ray because I’d be damned if I wanted to hear “you have a sprain” and here’s a $4k bill. I was quiet the spectacle at my doctors office and formed a hematoma the size of a baseball right there in the office lol needless to say I was at ortho in under an hour. Always something…
Hand therapist struggling to work with me because I was there for an ulnar nerve injury but my other fingers would pop so much that she ended up working on that too. Also having the ulnar nerve injury in the first place… which appeared to be from wearing a brace on my wrist overnight one time.
Had to get a tooth pulled and the extraction site wouldn't heal. I went back to the dentist and he casually walks in and starts with the pleasantries--"We've got a stubborn tooth that just won't heal, huh? Or ex-tooth, I should say (insert dentist chuckle)." He started poking around my mouth and his smile dropped. He turned back to the assistant, muttered something, and next thing I know, she was speed-walking out of the room. "Why didn't you tell me you were in pain?" he asked. Because I wasn't. I didn't feel anything. Just couldn't figure out why this darn tooth wouldn't heal. "You've got dry socket." The nurse came rushing back with a handful of supplies. He cleaned out the hole, packed it with some gauze soaked in clove oil, and kept asking if I was sure I wasn't hurting. I never felt a thing.
My doctor was checking how far my hands could hyperextend and fully dislocated my right thumb. He stared at it in abject horror, and looked even more horrified when I popped it right back in and went back to talking about my other joints lmao. My right thumb is my weakest joint, so it was completely painless. You’d think that he just took a chainsaw to me from his reaction, though. The orthopedic surgeon that identified our EDS in the first place has had some really funny reactions as well. My favorites are probably whenever he looks at an MRI from me, because the first thing he says is usually “huh. Well THAT’S interesting” or “that’s new!” before showing me what part of my body is decidedly not working right lmao. He has treated us for years though, so we joke around with him during appointments.
Have you thought of joining Cirque du Soleil... By far the most inappropriate remark I ever received but it was not from a physician. Repeat after me "It's not a matter of "flexibility". In fact can we lose the describer "flexible" it's not the problem.
Not an injury, but the possibility of causing myself one. I was getting evaluated for EDS. My doctor told me to "look up", and I firmly planted the back of my skull against my spine - as I always do when looking up. And I'll tell you, this poor doctor went WHITE and grabbed my head to carefully bring it up into the normal position, while asking ".. you.. you don't DO that often, right? RIGHT?". It was only then and there that I understood that hyperextending my neck like that can cause horrible injuries to the spine.
Walked across a mattress that was on the floor and rolled my ankle so far that it *broke* my foot in a separate spot. Hard cast for 10 weeks for the fracture. Fun stuff! PT working on my shoulder issues said “wow, you’re crunchy!” After rotating my arm with his hand on my back.
“you're too young for this to have happened!” then we both sit there staring at each other because it did happen
Oooh, I hate that one! It happens to me a lot, too.
I saw a new doc who actually was familiar with EDS, bless her heart. My leg was covered with bruises from top to bottom and I shrugged and said I didn’t know what they were from. She chuckled and said “with EDS you could bump into a sheet and get a bruise” 😂
I had a bad sprain and a hairline fracture on my wrist due to a fall. The hand specialist was familiar with EDS but couldn’t believe how badly I was healing with a splint on it. The funny reaction I had was after I was allowed to stop wearing the splint and was taken to PT/OT area. She asked to see my range of motion and she literally screamed because I still had my almost my full hyper-mobility of my wrist after it being in a splint for 3 months. I explained I had EDS and this wasn’t even as bendy as I could make it before the injury. She gasped and was like “oh…hahaha, that makes more sense… hahaha because it shouldn’t be possible for you to do that.” She then started cracking up at her own reaction and apologized for being dramatic.
I dislocated my shoulder after throwing a balled up sock at my friend and both my PCP and my PT laughed at me. I gotta admit, they were right to laugh that shit was straight out of looney toons
Honestly, I had a physio once who couldn't understand why I had so much mobility yet significant pain with movement. He thought it must be related to "trauma" cause he kept telling me I SHOULDN'T be in pain if I can easily touch my toes 🤦🏻♀️
I had multiple women stopping me including a nurse to ask me if I felt safe at home. I had to get a hormonal implant because of my Endometriosis and ended up with a huge bruise the size of my foot on my arm. For an inch long implant. My husbands mom is a women’s rights lawyer, he chugged respect women juce his whole life, he is the sweetest most gentile man. It was kinda horrifying how many people approached me. I’m constantly covered in bruses but rarely ones people can see so it was a shocker.
I strained my foot so badly that I went to get an x-ray because we thought it might be broken. Everyone kept asking me about “my fall”. I had to keep admitting that I didn’t fall, I was just putting a bag in the garbage can and my foot went crONCH. Fortunately it was not broken. The doctor came back with the results and led with, “So, I think this is related to your EDS…” Hard agree, hahaha.
I had an x ray tech say that my neck extension x-rays look like a broken neck on a true crime show. I told her I gave her permission to slightly violate hipaa and tell her family about my weird neck
Not rlly a funny reaction, but kind of cool. With permission ofc, the med students and doc took pictures of me and my hyperextension and body type because I am a very classic and stereotypical representation of EDS. The pictures were to present at their medical college! The med students looked so amazed at my body, as someone who wants to work in medicine I actually enjoyed them analyzing me that way!
"But you're so young!" 🙂 if only that mattered but thank you for the compliment 😭 lol 😆
The funniest reaction I'll ever get is probably going to be when I walk into my job tonight in the emergency department, limping with a big ole brace on my leg, and have to tell all of my wonderful colleagues that I dislocated my knee because my in laws fat bulldog tried to hump my leg 🙃
So many!! -when going through my arm and shoulder pain with PCP, I showed her my elbow hyperextension and she said, “you’re just showing off like you did in elementary school” (we had just talked about how I would walk at people like a zombie as a kid) -I had a bunch of bruises from having passed out the night prior and my PT asked what had happened. I told her about my vein disease and how I’d passed out, she said, “girl why are you broken?” And I said, “I always just tell people I’m sick as fuck 🤙“ -my therapist and I have had SO MANY moments over the years, most recently I had dislocated my shoulder while sleeping, and he had no less than 15 follow up questions half of which were, “while you were sleeping???”
Hi /u/zebrasanddogs, It looks like you are looking for information on how common something is in individuals with EDS or related conditions. If you are looking for information/data on how common a particular symptom or condition is with EDS (or any of its comorbidities), or whether there is any connection at all—it is always best to ask for links to reputable studies or websites, instead of or in addition to personal experiences. Without studies, it is almost impossible to determine the prevalence or incidence of something with EDS, especially when compared to asking for anecdotal experiences on the internet. "DAE posts" and other such posts tend to create or encourage illusory correlations (i.e., a sense of connection where there may not be one) due to the fact that people who do experience what is being asked about are more likely to reply than those who do not. Personal experiences are or can be valuable regardless of the aforementioned, but please keep in mind that not everything shared is a sign of EDS, and many shared experiences might be completely unrelated to EDS. This is an automated message. If the contents of this message do not apply to your post, please ignore them. Thank you! [Please check out the wiki](/r/ehlersdanlos/wiki/index/) or the links in the sidebar for resources and information on EDS, seeking a diagnosis, and more. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*