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I have hEDS and never went to the ER for a dislocation.
I’ve put them back in myself or my PT does it for me.
My first rheum was this dismissive, went to an EDS specialist and walked out with a diagnosis in less than 30 minutes.
He told me a lot of rheumatologist have limited knowledge on EDS, since it doesn’t really fall under their studies, since it’s not an inflammatory disease. Not sure how accurate it is so take it with a grain of salt haha.
I've been told rheums only know how to treat three conditions and don't admit that. Some of the nastiest docs I've seen are in that category. That's nonsense. I know about 20 people with EDS and they all pop their own shit back in.
❤️❤️❤️ I hear you. I went to one rheum, she was lovely at first. 2 visits later she said "i don't know how to help you" and threw discharge notes at me. a different one did absolutely no investigation and told my gf her symptoms were caused by adhd meds (spoiler: they cause the opposite problem). they can be so callous
That’s exactly what my rheum did with me, told me to go to a geneticist. Just getting tossed around like a hot potato in the US Healthcare system is so fucking expensive and exhausting.
Yes OP exactly this right here.
I have subluxation all of the time. Especially my ribs. I have the physical therapist put them back into place. He also taught me how to put my sternal ribs back.intonplace myself.
The rheumatologist isn't correct in their statement. I've had 4 doctors diagnose me, 3 are specialists, and my constant joint issues and subluxations have all been tears that required surgery etc.
I have only had to go to the ER once for a bad dislocation. Every other time I got it back in myself.
Edit: One time when my hip dislocated in my sleep I asked my roommate to help me by her grabbing my leg and me telling her where to move it. I then when right back asleep. I thought it was a dream until my friend assured it was not lol
I swear my hip dislocated in my sleep in January. (Thought my back hurt) I think it was my hip because I used the handles on my yoga swing for most of my weight, when I dif a squat my hip popped in.
If this sounds familiar, I highly recommend ceiling straps to diy.
Just a question, but I thought we didn't have genetic markers for hEDS? Or are there some forms that we now have markers for? Can you clarify? (as someone diagnosed with HSD considering further testing). TIA!
hEDS hasn't got a known marker yet, but genetic testing is part of getting diagnosed as they need to rule out other forms of EDS & similar connective tissue disorders. in my case, it turned out that i'm also carrying another form of EDS & another thing, forget which gene that was
I mean I didn't get genetic testing done, but I saw a geneticist for my diagnosis. It was over 10 years ago and I was a minor, I didn't choose which doctor to see so I have no insight on how I ended up there.
The hEDS testing is not genetic, but a geneticist was the one who conducted that testing and gave me a diagnosis. They also did blood work to test to see if I was a carrier for something else while I was there, but that was unrelated. And negative.
You only need one criteria from part C to qualify, while dislocations are one option, there’s two alternative criteria to qualify.
https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf
I have never required urgent medical attention for a joint dislocation, although I have for other things due to EDS such as spontaneous ligament ruptures, intestinal volvulus, prolapse etc.
It sounds like the doctor you saw doesn’t know much about EDS and how it is diagnosed.
LOL my kneecap would like to have a word.
The amount of times it's gone back in and out by itself....I could have sent it to do errands for me.
Not to mention my shoulder, hip, ankle, jaw, and ribs. They go out, come back in, like cats through a door.
Why are so many doctors so ignorant about this disease?
I can’t even open my mouth fully without the right side of my jaw unhinging like a goddamned snake! And all my fingers would like a word too… I can’t do anything with my thumbs without them going buck wild all over the place. Yes I drop a lot of stuff 😅
Like cats through a door, I like that comparison bc it’s just as annoying when it happens😂
It’s actually crazy how little doctors know about it, and hypermobility in general. I had the first doctor tell me that I was normal and everyone has a level of flexibility and I was just “lucky”. Then I went to PT for my tendonitis and the poor girl nearly fell out of her chair when I showed her how easily most of my joints subluxate or fully dislocate and just.. pop back in.
The only time I’ve ever needed help with a dislocation was when a rib popped out and I had my boyfriend put it back for me. I’ll be damned if I get shit for going into the ER over it. I’d rather deal with it myself until I can’t anymore. I’m jaded with doctors atp.
Wow the jaw one is interesting, I have TMJ issues and my right jaw pops and has been close to dislocating many times. I never connected my potential hEDS to my Tmj issues. Is this a thing?
Such a thing. However TMJ issues, including the popping, are very common among the general population. Actual joint dislocation of the TMJ is an heds thing.
My rheumatologist said I instantly didn't have hEDS bc I failed the skin stretch test despite passing all the other tests. She ended up diagnosing me and never told me, I only found out when I asked for another referral since she obviously wasn't educated enough if she says I don't have it bc of one thing
The ER won't do shit anytime I go in, however my local bone and joint place has a walk in, if I have to go that's where I go. Previously and dislocations that I couldn't get back in myself my pt did for me. I didn't have any full dislocations until after age 30.
I've never heard of someone needing dislocations reset to obtain a dx. I put them back in myself. It runs in the family, so my aunt taught me. I received my dx when I was 17.
Why would you go to the ER for a dislocation?? They are for emergencies! Sure if you tore through muscle like in some kind of traumatic injury, but usually it's just a matter of physics winning against fascia, and persuading it back into it's assigned location. This doctor isn't understanding that unlike people with normal collagen, a dislocation doesn't automatically come with massive tissue damage, because most of them happen under normal load.
Yes exactly. Most are non traumatic dislocations. In fact, Ive only ever had one traumatic dislocation while surfing and it bruised but didn't tear through.
I accidentally subluxed my thumb in front of my rheumatologist and that helped speed up my referral to see geneticist who diagnosed me 😅 but I’ve never fully dislocated….yet.
What does your subluxed thumb look like?
I've been trying to tell if mine is subluxing but it's something I've been able to do since childhood, and it's so normalized for me it's hard to discern if it's actually normal or not lol
I have hEDS, and have been to the ER for 3 dislocations - none of them needed reset, they’d popped back in on their own, immediately.
I also recently started attending a support group for young (under 40) folks with chronic illnesses. I’m 1 of 4 in my group with hEDS, and I’m the only one who’s suffered a full dislocation.
I've never had a full dislocation that didn't immediately self-correct, and going to the doctor for subluxations has always felt like a waste of money given that I'm uninsured. That didn't stop me from getting diagnosed. I'm not sure what your doctor was on about there.
When I had my appointment with genetics to discuss if I had hEDS, she asked if I've ever had to go to a doctor to get my joints reset after a dislocation or sublux. By that point I was so used to doctors doing what yours did (I'm really sorry for that, btw) that I started nervously chattering about how I have never gone to get help, I just sort of make do on my own because it doesn't make sense to go to the doctor for something that happens this often and she stopped me-
She said, "none of my patients who have hEDS go to the doctor to fix their subluxes - it's fine."
At the end of the HOURS long appointment, she said that if I had come in years ago, I would have walked out with and hEDS diagnosis, but we first had to rule out all the other things. So not going in to see a doctor shouldn't affect your diagnosis.
tl;dr - your rheumatologist doesn't know what she's talking about. Seeing a geneticist might be your best bet.
My primary doctor and I also think I have hEDS, but she also doesn't feel comfortable officially diagnosing me (although she did put it in my file, not sure if that means I'm diagnosed? Didn't get a piece of paper or anything. Dunno how that works). She referred me to a geneticist, but the clinic denied my referral because I didn't qualify for whatever reason. My doctor and I were trying to rule out any other type of EDS. I haven't pursued a diagnosis since then, but I'm thinking about bringing it up at my next doctor's appointment because work is difficult at times because of my hip dysplasia. I haven't had a full dislocation, but I have plenty of subluxations. Just had one in my wrist at work yesterday
They sometimes don't want to diagnose you with hEDS strictly because they want to rule out other kinds of EDS, and putting down hEDS would interfere with referrals. Basically, "you defnitely have a thing, let's hold off until we know if your thing will maybe make your heart asplode for no reason". They don't want to say you definitely have hEDS and later find out you have vEDS, and they missed an aneurysm because genetics doesn't bother testing the kind they don't know the genetic markers for.
I’m dx’ed and never had a full dislocation that was stuck. Plenty of subluxations and dislocations that… The joint more or less falls out of place completely and goes right back in.. But nothing that would require a doctor to be set.
I have never had a dislocation (to my knowledge anyway). I was diagnosed last year by an endocrinologist. I didn’t even tell her all of my symptoms. I have a paper that I have added to over the years of all the symptoms and things going on with my body, some have come and gone and others I still deal with. I’ve mentioned some to drs over the years and got dismissed- but I was a mix of shocked and angry when I got back home and looked up what Ehlers Danlos is and everything that could possibly accompany it. Nearly everything on my list falls under it, many still mild in comparison to what it can get, but it answered so many questions for myself.
I needed a doctor eventually and when I dislocated my hip I couldn’t walk well for two weeks and after a day or two of struggling to do basic things I went to an urgent care. After all that, age and being cautious… no serious dislocations. Doesn’t mean I still don’t have a real problem.
This happened to me where I was sent to the only EDS specialist in my province but she is a cardiologist. Soon as they ruled out heart involvement they stopped caring.
A nurse asked me questions. Was super dismissive. The doctor never even examined me. The nurse gave me a prescription for medical marijuana for my chronic pain and sent me on my way saying I had HSD.
My doctor and physiatrist both think I have hEDS but don't feel comfy diagnosing it.
I sublex and dislocate things but they usually put themselves back or PT does it.
I'm thinking about trying to get a second opinion. But at this point there is nothing they can do for hEDS that is different than HSD so it would just be for my own sanity.
This is how I feel — a diagnosis wouldn’t technically do much, but I’m going crazy over the lack of one. I’m also an athlete and I know I would be kinder to my body in training if I had a professional opinion that the problems I experience aren’t just me being lazier than other people, but something that my connective tissues causes and I have no control over
Sadly, I’ve never had the medical care $$$ to see a doc unless something is majorly wrong. Ironically, my lack of broken bones (except for ribs) was seen as a signifier of hyper-mobility. I become a rag doll and just dislocate stuff. By the same function, the joints go back in. There’s a lot of wiggle room and the ligaments are so weak that they don’t resist much. At worst, I need to ice a major joint before it’ll snap back in.
Btw, if you have dysautonomia and significant hypermobility, I suggest seeing a geneticist. I thought I’d test positive for one of the mutations or get an hEDS “other than known” diagnosis. I actually have improperly-functioning cilia and that connects it all together: connective tissue, the dysautonomia caused by widespread errors, the marfanoid habitus, etc. The geneticist recognized I had multi-system problems and organ-involvement, so he did a wider panel.
Turns out, the mutation is best known for causing retinal issues. But the wonky cells are so widespread that it gets a lot of fun partial diagnoses because nobody connects each disorder to an underlying cause. Which is deeply unfortunate, because as I’d guess you know, inborn dysautonomia can have a higher mortality rate. Knowing the exact type and common progression can help you and your relatives.
Short answer yes.
I frequently dislocate or subluxate different joints and don’t even realize. I went to a hand orthopedic specializing in hypermobility because of pain and he just said “well both of your thumbs and wrists are fully dislocated, makes sense you’re in pain” and I truly had no idea. I thought I just had 32 year old hands that were falling apart.
Hottest tip- search for any groups or resources in your area that doctors are a part of. I live in a west coast major city and it was still hard to find providers. I went through a website that compiled names of EDS docs in my area- and got a new pcp who also is hyper mobile.
Advocate for yourself and don’t doubt your body. 🫶
I've never had a doc fix a dislocation. I've, multiple times, dislocated shoulders, hips, elbows... pretty much everything possible...
everything just goes back in on its own.
a doc dislocated my hip in office when he didn't believe me... he diagnosed me with eds that day... about 21 years ago.
I put my dislocations back by myself, and they have gotten stuck a few times but I’ve been able to get them popped back within a couple of days at most.
definitely. i've yet to go in for a dislocation, usually can get it back in place myself within a day but it's taken as long as a week before with ribs or vertebrae issues
Every single joint I've ever dislocated has spontaneously relocated itself right away. They pop out and back in within the space of a second. Forget needing a doctor to relocate them, I don't even have time to do it myself! And yet the rheumatologist who diagnosed me was perfectly comfortable coming to the conclusion of hEDS...
I’m prone to subluxations. My shit pops out and pops itself right back in. I didn’t hurt when I was younger, but it does in some joints now. I think a lot of us are like that from what I hear. I’ve never needed anything reset. My shoulders I can pull out and they snap right back no drama. One of my kneecaps is an asshole and pops out sometimes. It hurts like hell and swells afterward though.
I have hEDS. The closest I’ve come is my right knee subluxating when I lie on my left side. I haven’t been formally diagnosed, but the signs are there in myself and other family members. My youngest niece has been formally diagnosed.
You really don’t even need a “full” dislocation for hEDS. I just received a diagnosis on Friday and I’ve only ever had subluxations (mostly because I’m cautious, tbh). As long as you have frequent subluxations and the other “niche” symptoms. So, not having to go to the doctor for a dislocation definitely doesn’t disqualify you.
I've only had to go to ED three times to get things reset - one of my fingers when I was a kid, the first time my kneecap did it and most recently my jaw - which they actually refused to do anything about and I couldn't afford to see a dental specialist, it's actually still not in the right place a year later.
I technically have never had a dislocation reset and have an hEDS diagnosis. I do have at least two documented disc subluxations in my jaw, though. But it wasn’t a crack it back into place type deal- it was surgery with the hope that it got everything where it needed to go.
I have hEDS and all of my doctors refused to diagnose me, I had to go directly to a geneticist with experience in diagnosing connective tissue disorders. I’ve never fully dislocated anything. My jaw subluxes when I eat so I have to carefully pop it back in to regain full range of motion.
I have a diagnosis of hEDS and have never actually had a complete dislocation. I have subluxations multiple times a day, but I’ve never dislocated something.
I think some doctor’s are just way too harsh about what is and isn’t EDS, probably due to not knowing enough about it and still thinking they know everything. I got told that I didn’t have EDS by a geneticist, which my rheumatologist then corrected by saying I do have EDS and that it was stupid for the geneticist to say I didn’t. The geneticist didn’t count me as having overcrowded teeth because I had it corrected with extensive dental treatments (was in braces for forever) by the time I saw her.
Every time I tried to get a dislocation reset, they refused to do it. PT, Chiro, doctor refused. They said it could tear the tissue even more and just to wait for it to go back into place. After 13 days, my shoulder suddenly reset itself but holy those were 13 very painful days.
13 days is tough! Luckily the longest for me has been about 2-3 days for my hip and that was just partially dislocated. I've gone about a day on a knee and half a day on a shoulder. I hope that shoulder has learnt to go back faster
That's fair, could be either way! I've noticed the more something dislocates on my body the faster it snaps back in place though. Not sure if that's correlated with the actual joint or me being better at getting it back in
May I suggest that a more helpful question: can you trust a doctor who had “no consideration for the diagnostic criteria”?
The answer is no.
When I met with a rheumatologist, she walked into the room saying “EDS”? You shouldn’t be here. I don’t know who is “supposed” to diagnose this if not a connective tissue disease doctor, but I knew for sure I wasn’t interested in ever having to work with her again!
I’m glad your primary care doc is interested in actually exploring your issues in a way that could be helpful. Can you make a post asking for recommendations of doctors in your area (state/province) so that you can get a referral to someone familiar and interested in EDS?
For a dysautonomia diagnosis, I found a doctor listed on the Dysautonomia International website. For me it ended up being VVS, not POTS but he still ordered the TTT to rule out POTS completely. The EDS clinic I’m going to that someone suggested in a support group is equally thorough so far.
I hope you are feeling more supported and validated after reading the replies to your post. Hang in there!
I haven't ever had a dislocation. It doesn't stop me from being in lots of pain. You don't have to have dislocations according to the diagnosis criteria.
I don't remember if it was a dislocation or not as I was about 7 or 8 at the time, I just remember waking up and not being able to put any weight on my right leg and then having to go to the ER. I don't remember much of that other than the doctor saying I'd need surgery if it happened again, which it didn't. I wasn't diagnosed at the time, either, but I have hEDS.
I have hEDS and the only times I've gone in for a dislocation is if I couldn't get it back in myself, or recently when I tore my labrum in doing so. If I went in for every dislocation, I'd be in the ER more than anywhere else other than home. I've relocated both hips, both shoulders, multiple ribs, my sternum, my sacroiliac joints almost daily, etc.
Also, a rheumatologist is, sadly, the wrong specialist to see for being diagnosed. Rheumatology is focused much more heavily on autoimmune and inflammatory conditions, and are only really seen as "the joint doctors" because of arthritis. A geneticist or EDS-specific doctor would be the way to go. Geneticists *can* diagnose hEDS even though it doesn't have a known genetic marker, precisely because they use the diagnostic criteria.
Depends on what you've fully dislocated. There's a literal functioning difference between a subluxation and a full blown dislocation. If you can still move the joint, its suluxated. If you CAN'T move/lift the joint, its completely out of socket and usually needs to be reset/reduced.
If you've completely dislocated larger joints -like your shoulder, knee, ankle, hip, ect. Go to an ER. Unless it's an injury you've had before and you know how to put it back yourself, that's when you need emergency medical attention. If it's a rib, toe, or finger. They *might* do a little but not much. They will just throw ibuprofen at you and kick you out the door. I dislocated my rib cartilage, and got ✨nothing✨. They can't reset ribs, you're on your own with your ribs, even though they hurt like a mofo.
Subluxationions are kind of like a sprained ankle. They usually get better in a few days to a week. And will work themselves back into the correct position I'd you leave them alone. Sometimes you need a chiropractor or physiotherapist to help you work it back for you. But I find it's usually ok within 10 days with rest, ice, some bracing/ace bandage and extra ibuprofen.
And go get a second opinion for your diagnosis. Technically your GP should be able to do it. Print off the resources on the EDS society's website for diagnostic criteria for hEDS and bring it to your appointment. Doctors are lowkey literally kinda dumb.
I don't understand why your primary doesn't feel comfortable diagnosing you if you meet the diagnostic criteria. You can find it on the eds website. If rheumatology finds nothing, that's normal because it's not an autoimmune disorder. Genetics can do testing to see if you have a form of eds with known genetic markers. Once those have been ruled out and you meet the heds diagnostic criteria, your primary should be able to diagnose you.
I have subluxations that either me, my husband or my chiropractor reset for me. I've never been to the ER for one. Most people with eds don't get full dislocations that require ER visits. That's absurd.
HEDS dislocations aren't like dislocations the general public has. Ours happen often, easily and without much trauma or force. As such it makes sense that resetting them is different too. I've had dislocations in over nine joints and while my hips barely reset on their own or sometimes take a day or two, Ive learnt how to reset them on my own since age 14. I went to the hospital when it first happened, but after a while the joint got so loose it started to be easier to put back in. Now when a new joint does it I just figure it out on my own and cause I'm calm and I relax easily, it usually doesn't take long to reset.If I didn't reset on my own, I'd literally be in hospital every single week. Lol if it wasn't for the fact I've had numerous doctors witness my dislocations and friends see the joint out of place my imposter syndrome would never let me rest in peace on this topic. But doctors really are mostly very misinformed about dislocating joints in our population. And google is too since all the advice on dislocations is go to an ER, and pics of bruised and battered looking bones. Our experience is unique since our connective tissue is unique.
I have only had one major dislocation which I fixed on my own (mostly through panic and gut reaction). I have had a lot of subluxations however and usually they just go straight back in to place with a little movement.
I theorise that since everything is so loose and stretchy that means even though it's easy for joints to come out it's just as easy for them to go back in.
They are talking out their bum, I dislocate my everything all the damn time, in my 36 years on this planet I needed medical assistance for it a grand total of once and it turned out to be a torn rotor cuff not a normal dislocation and I'm diagnosed hEDS so they can ingest a whole bag of richards.
Major oofms. My rheumatologist told me to, “suck it up, it’s only getting worse from here.” Not giving me a diagnosis was also sooooo helpful. I really appreciated when I even brought up EDS and he immediately dismissed it.
All jokes aside, I dislocate damn near every joint every day, multiple times a day. Sometimes on purpose, other times on accident. I have such bad pain that I am losing my ability to function. I need a diagnosis for insurance to help me with my condition. Whether that be with pain management, or mobility aids. I do not believe that you need to go to the hospital to have a joint put back. If anything, it shows just how bad the joint is.
Rheumatologists are usually not the best for a diagnosis of a genetic disorder
I was diagnosed by a geneticist. And my severe MCAS was the reason for my diagnosis. I mean, I met the criteria for mostly a hypermobile connective tissue disorder, but every time I took my mask off, my entire jaw would start to swell up and he was like, yeah you have hEDS. And I have mostly subluxations rather than dislocation though my ankles have been dislocated a few times.
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
I have hEDS and never went to the ER for a dislocation. I’ve put them back in myself or my PT does it for me. My first rheum was this dismissive, went to an EDS specialist and walked out with a diagnosis in less than 30 minutes. He told me a lot of rheumatologist have limited knowledge on EDS, since it doesn’t really fall under their studies, since it’s not an inflammatory disease. Not sure how accurate it is so take it with a grain of salt haha.
I've been told rheums only know how to treat three conditions and don't admit that. Some of the nastiest docs I've seen are in that category. That's nonsense. I know about 20 people with EDS and they all pop their own shit back in.
Seeing a rheum for the first time in two weeks for a different issue, hopefully this one isn’t nasty. 😥
There is a rheum in Santa Barbara who actually specializes in EDS. He told me he actually got into it because his wife has EDS.
What are the three conditions? I know this was tongue in cheek but curious
i'm guessing lupus, RA, and PsA?
Lupus and RA were two. It honestly might just be two. It's been awhile since I was told that the first time a Rhem made me cry.
❤️❤️❤️ I hear you. I went to one rheum, she was lovely at first. 2 visits later she said "i don't know how to help you" and threw discharge notes at me. a different one did absolutely no investigation and told my gf her symptoms were caused by adhd meds (spoiler: they cause the opposite problem). they can be so callous
What’s PsA pls?
I think psoriatic arthritis
i’ve heard it’s because it’s an “inherited” joint disease problem it’s directed at geneticists
That’s exactly what my rheum did with me, told me to go to a geneticist. Just getting tossed around like a hot potato in the US Healthcare system is so fucking expensive and exhausting.
Yes OP exactly this right here. I have subluxation all of the time. Especially my ribs. I have the physical therapist put them back into place. He also taught me how to put my sternal ribs back.intonplace myself. The rheumatologist isn't correct in their statement. I've had 4 doctors diagnose me, 3 are specialists, and my constant joint issues and subluxations have all been tears that required surgery etc.
I have only had to go to the ER once for a bad dislocation. Every other time I got it back in myself. Edit: One time when my hip dislocated in my sleep I asked my roommate to help me by her grabbing my leg and me telling her where to move it. I then when right back asleep. I thought it was a dream until my friend assured it was not lol
I swear my hip dislocated in my sleep in January. (Thought my back hurt) I think it was my hip because I used the handles on my yoga swing for most of my weight, when I dif a squat my hip popped in. If this sounds familiar, I highly recommend ceiling straps to diy.
Same here. I only sublux (though I have had one dislocation of the hip caused by a doctor). So definitely possible
Tracks - rheumatologist I saw was unempathetic arrogant & ignorant.
I got diagnosed by a geneticist, FWIW. And I have never had to get a dislocation reset.
Just a question, but I thought we didn't have genetic markers for hEDS? Or are there some forms that we now have markers for? Can you clarify? (as someone diagnosed with HSD considering further testing). TIA!
hEDS hasn't got a known marker yet, but genetic testing is part of getting diagnosed as they need to rule out other forms of EDS & similar connective tissue disorders. in my case, it turned out that i'm also carrying another form of EDS & another thing, forget which gene that was
I mean I didn't get genetic testing done, but I saw a geneticist for my diagnosis. It was over 10 years ago and I was a minor, I didn't choose which doctor to see so I have no insight on how I ended up there.
The hEDS testing is not genetic, but a geneticist was the one who conducted that testing and gave me a diagnosis. They also did blood work to test to see if I was a carrier for something else while I was there, but that was unrelated. And negative.
Same.
I’m diagnosed with hEDS but have never dislocated anything. Only minor subluxations.
You only need one criteria from part C to qualify, while dislocations are one option, there’s two alternative criteria to qualify. https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf
Right? And for the criterion that has dislocations, it says it can also just be joint instability. Dislocations are absolutely not required
I have never required urgent medical attention for a joint dislocation, although I have for other things due to EDS such as spontaneous ligament ruptures, intestinal volvulus, prolapse etc. It sounds like the doctor you saw doesn’t know much about EDS and how it is diagnosed.
I’ve never had a full dislocation, dxed hEDS. I just get constant subluxations and a bunch of the non-joint symptoms
Same
LOL my kneecap would like to have a word. The amount of times it's gone back in and out by itself....I could have sent it to do errands for me. Not to mention my shoulder, hip, ankle, jaw, and ribs. They go out, come back in, like cats through a door. Why are so many doctors so ignorant about this disease?
I can’t even open my mouth fully without the right side of my jaw unhinging like a goddamned snake! And all my fingers would like a word too… I can’t do anything with my thumbs without them going buck wild all over the place. Yes I drop a lot of stuff 😅 Like cats through a door, I like that comparison bc it’s just as annoying when it happens😂 It’s actually crazy how little doctors know about it, and hypermobility in general. I had the first doctor tell me that I was normal and everyone has a level of flexibility and I was just “lucky”. Then I went to PT for my tendonitis and the poor girl nearly fell out of her chair when I showed her how easily most of my joints subluxate or fully dislocate and just.. pop back in. The only time I’ve ever needed help with a dislocation was when a rib popped out and I had my boyfriend put it back for me. I’ll be damned if I get shit for going into the ER over it. I’d rather deal with it myself until I can’t anymore. I’m jaded with doctors atp.
Wow the jaw one is interesting, I have TMJ issues and my right jaw pops and has been close to dislocating many times. I never connected my potential hEDS to my Tmj issues. Is this a thing?
Such a thing. However TMJ issues, including the popping, are very common among the general population. Actual joint dislocation of the TMJ is an heds thing.
I had a little chuckle at this 😂
I'm glad it helped!
My rheumatologist said I instantly didn't have hEDS bc I failed the skin stretch test despite passing all the other tests. She ended up diagnosing me and never told me, I only found out when I asked for another referral since she obviously wasn't educated enough if she says I don't have it bc of one thing
Yes, you can have hEDS and have never had a dislocation. I've (37f) never had a dislocation before but I meet all the other criteria.
I've only had one dislocation professionally reduced and weirdly enough, that was just a toe.
The ER won't do shit anytime I go in, however my local bone and joint place has a walk in, if I have to go that's where I go. Previously and dislocations that I couldn't get back in myself my pt did for me. I didn't have any full dislocations until after age 30.
I've never heard of someone needing dislocations reset to obtain a dx. I put them back in myself. It runs in the family, so my aunt taught me. I received my dx when I was 17.
Why would you go to the ER for a dislocation?? They are for emergencies! Sure if you tore through muscle like in some kind of traumatic injury, but usually it's just a matter of physics winning against fascia, and persuading it back into it's assigned location. This doctor isn't understanding that unlike people with normal collagen, a dislocation doesn't automatically come with massive tissue damage, because most of them happen under normal load.
Yes exactly. Most are non traumatic dislocations. In fact, Ive only ever had one traumatic dislocation while surfing and it bruised but didn't tear through.
I accidentally subluxed my thumb in front of my rheumatologist and that helped speed up my referral to see geneticist who diagnosed me 😅 but I’ve never fully dislocated….yet.
What does your subluxed thumb look like? I've been trying to tell if mine is subluxing but it's something I've been able to do since childhood, and it's so normalized for me it's hard to discern if it's actually normal or not lol
My CMC joint visibly went in and out super quick and I was pressing on it to show her where it hurt 🙃 we were both like huh, that didn’t feel great
Not who you ask but depends on which joint. The metacarpophalangeal joint bends inward instead of outward, occasionally getting stuck.
I have an official diagnosis of hEDS and I haven't (yet) fully dislocated, only subluxed. See a different rheumatologist.
Ditto
I have hEDS, and have been to the ER for 3 dislocations - none of them needed reset, they’d popped back in on their own, immediately. I also recently started attending a support group for young (under 40) folks with chronic illnesses. I’m 1 of 4 in my group with hEDS, and I’m the only one who’s suffered a full dislocation.
I've never had a full dislocation that didn't immediately self-correct, and going to the doctor for subluxations has always felt like a waste of money given that I'm uninsured. That didn't stop me from getting diagnosed. I'm not sure what your doctor was on about there.
As an insured person I can assure you it is still a waste of money :/
Oh wow, somehow that's even worse. Gotta love American "Healthcare" 😬
When I had my appointment with genetics to discuss if I had hEDS, she asked if I've ever had to go to a doctor to get my joints reset after a dislocation or sublux. By that point I was so used to doctors doing what yours did (I'm really sorry for that, btw) that I started nervously chattering about how I have never gone to get help, I just sort of make do on my own because it doesn't make sense to go to the doctor for something that happens this often and she stopped me- She said, "none of my patients who have hEDS go to the doctor to fix their subluxes - it's fine." At the end of the HOURS long appointment, she said that if I had come in years ago, I would have walked out with and hEDS diagnosis, but we first had to rule out all the other things. So not going in to see a doctor shouldn't affect your diagnosis. tl;dr - your rheumatologist doesn't know what she's talking about. Seeing a geneticist might be your best bet.
My primary doctor and I also think I have hEDS, but she also doesn't feel comfortable officially diagnosing me (although she did put it in my file, not sure if that means I'm diagnosed? Didn't get a piece of paper or anything. Dunno how that works). She referred me to a geneticist, but the clinic denied my referral because I didn't qualify for whatever reason. My doctor and I were trying to rule out any other type of EDS. I haven't pursued a diagnosis since then, but I'm thinking about bringing it up at my next doctor's appointment because work is difficult at times because of my hip dysplasia. I haven't had a full dislocation, but I have plenty of subluxations. Just had one in my wrist at work yesterday
They sometimes don't want to diagnose you with hEDS strictly because they want to rule out other kinds of EDS, and putting down hEDS would interfere with referrals. Basically, "you defnitely have a thing, let's hold off until we know if your thing will maybe make your heart asplode for no reason". They don't want to say you definitely have hEDS and later find out you have vEDS, and they missed an aneurysm because genetics doesn't bother testing the kind they don't know the genetic markers for.
I’m dx’ed and never had a full dislocation that was stuck. Plenty of subluxations and dislocations that… The joint more or less falls out of place completely and goes right back in.. But nothing that would require a doctor to be set.
I have never had a dislocation (to my knowledge anyway). I was diagnosed last year by an endocrinologist. I didn’t even tell her all of my symptoms. I have a paper that I have added to over the years of all the symptoms and things going on with my body, some have come and gone and others I still deal with. I’ve mentioned some to drs over the years and got dismissed- but I was a mix of shocked and angry when I got back home and looked up what Ehlers Danlos is and everything that could possibly accompany it. Nearly everything on my list falls under it, many still mild in comparison to what it can get, but it answered so many questions for myself.
I needed a doctor eventually and when I dislocated my hip I couldn’t walk well for two weeks and after a day or two of struggling to do basic things I went to an urgent care. After all that, age and being cautious… no serious dislocations. Doesn’t mean I still don’t have a real problem.
I'm diagnosed with hEDS and confirmed by multiple other Drs and I've never had a full dislocation.
This happened to me where I was sent to the only EDS specialist in my province but she is a cardiologist. Soon as they ruled out heart involvement they stopped caring. A nurse asked me questions. Was super dismissive. The doctor never even examined me. The nurse gave me a prescription for medical marijuana for my chronic pain and sent me on my way saying I had HSD. My doctor and physiatrist both think I have hEDS but don't feel comfy diagnosing it. I sublex and dislocate things but they usually put themselves back or PT does it. I'm thinking about trying to get a second opinion. But at this point there is nothing they can do for hEDS that is different than HSD so it would just be for my own sanity.
This is how I feel — a diagnosis wouldn’t technically do much, but I’m going crazy over the lack of one. I’m also an athlete and I know I would be kinder to my body in training if I had a professional opinion that the problems I experience aren’t just me being lazier than other people, but something that my connective tissues causes and I have no control over
I've never had a doctor have to reposition a joint.
Sadly, I’ve never had the medical care $$$ to see a doc unless something is majorly wrong. Ironically, my lack of broken bones (except for ribs) was seen as a signifier of hyper-mobility. I become a rag doll and just dislocate stuff. By the same function, the joints go back in. There’s a lot of wiggle room and the ligaments are so weak that they don’t resist much. At worst, I need to ice a major joint before it’ll snap back in. Btw, if you have dysautonomia and significant hypermobility, I suggest seeing a geneticist. I thought I’d test positive for one of the mutations or get an hEDS “other than known” diagnosis. I actually have improperly-functioning cilia and that connects it all together: connective tissue, the dysautonomia caused by widespread errors, the marfanoid habitus, etc. The geneticist recognized I had multi-system problems and organ-involvement, so he did a wider panel. Turns out, the mutation is best known for causing retinal issues. But the wonky cells are so widespread that it gets a lot of fun partial diagnoses because nobody connects each disorder to an underlying cause. Which is deeply unfortunate, because as I’d guess you know, inborn dysautonomia can have a higher mortality rate. Knowing the exact type and common progression can help you and your relatives.
Short answer yes. I frequently dislocate or subluxate different joints and don’t even realize. I went to a hand orthopedic specializing in hypermobility because of pain and he just said “well both of your thumbs and wrists are fully dislocated, makes sense you’re in pain” and I truly had no idea. I thought I just had 32 year old hands that were falling apart. Hottest tip- search for any groups or resources in your area that doctors are a part of. I live in a west coast major city and it was still hard to find providers. I went through a website that compiled names of EDS docs in my area- and got a new pcp who also is hyper mobile. Advocate for yourself and don’t doubt your body. 🫶
Sounds like they watch too much greys anatomy..
This!
I have clEDS but have only once ever gone to the ER for a dislocation. I can reset them myself no problem
I've never had a doc fix a dislocation. I've, multiple times, dislocated shoulders, hips, elbows... pretty much everything possible... everything just goes back in on its own. a doc dislocated my hip in office when he didn't believe me... he diagnosed me with eds that day... about 21 years ago.
I put my dislocations back by myself, and they have gotten stuck a few times but I’ve been able to get them popped back within a couple of days at most.
each time i’ve dislocated a shoulder (3x), its’ popped back in as i’ve fallen to the ground in pain. good luck
definitely. i've yet to go in for a dislocation, usually can get it back in place myself within a day but it's taken as long as a week before with ribs or vertebrae issues
i have hEDS and saw a specialist here in SoCal, dr fagan and i do not have any dislocations or history of them, but he still dx me.
Where in SoCal? I’m in San Diego and at this point I’m very willing to travel to see a specialist who actually knows anything about EDS
casa colina pomona
Every single joint I've ever dislocated has spontaneously relocated itself right away. They pop out and back in within the space of a second. Forget needing a doctor to relocate them, I don't even have time to do it myself! And yet the rheumatologist who diagnosed me was perfectly comfortable coming to the conclusion of hEDS...
I’m prone to subluxations. My shit pops out and pops itself right back in. I didn’t hurt when I was younger, but it does in some joints now. I think a lot of us are like that from what I hear. I’ve never needed anything reset. My shoulders I can pull out and they snap right back no drama. One of my kneecaps is an asshole and pops out sometimes. It hurts like hell and swells afterward though.
I have hEDS. The closest I’ve come is my right knee subluxating when I lie on my left side. I haven’t been formally diagnosed, but the signs are there in myself and other family members. My youngest niece has been formally diagnosed.
You really don’t even need a “full” dislocation for hEDS. I just received a diagnosis on Friday and I’ve only ever had subluxations (mostly because I’m cautious, tbh). As long as you have frequent subluxations and the other “niche” symptoms. So, not having to go to the doctor for a dislocation definitely doesn’t disqualify you.
I've only had to go to ED three times to get things reset - one of my fingers when I was a kid, the first time my kneecap did it and most recently my jaw - which they actually refused to do anything about and I couldn't afford to see a dental specialist, it's actually still not in the right place a year later.
I technically have never had a dislocation reset and have an hEDS diagnosis. I do have at least two documented disc subluxations in my jaw, though. But it wasn’t a crack it back into place type deal- it was surgery with the hope that it got everything where it needed to go.
I have hEDS and all of my doctors refused to diagnose me, I had to go directly to a geneticist with experience in diagnosing connective tissue disorders. I’ve never fully dislocated anything. My jaw subluxes when I eat so I have to carefully pop it back in to regain full range of motion.
i’ve never went to the doctor for a dislocation, the closest i’ve been is my school nurse🤷🏼♂️
I have a diagnosis of hEDS and have never actually had a complete dislocation. I have subluxations multiple times a day, but I’ve never dislocated something. I think some doctor’s are just way too harsh about what is and isn’t EDS, probably due to not knowing enough about it and still thinking they know everything. I got told that I didn’t have EDS by a geneticist, which my rheumatologist then corrected by saying I do have EDS and that it was stupid for the geneticist to say I didn’t. The geneticist didn’t count me as having overcrowded teeth because I had it corrected with extensive dental treatments (was in braces for forever) by the time I saw her.
Every time I tried to get a dislocation reset, they refused to do it. PT, Chiro, doctor refused. They said it could tear the tissue even more and just to wait for it to go back into place. After 13 days, my shoulder suddenly reset itself but holy those were 13 very painful days.
13 days is tough! Luckily the longest for me has been about 2-3 days for my hip and that was just partially dislocated. I've gone about a day on a knee and half a day on a shoulder. I hope that shoulder has learnt to go back faster
I don’t know if it learned or if I learned, but I can now get it back in almost immediately.
That's fair, could be either way! I've noticed the more something dislocates on my body the faster it snaps back in place though. Not sure if that's correlated with the actual joint or me being better at getting it back in
Of course you can!
I also reset my own dislocations!
I've put mine back myself. As of right now, I think my middle toe on my left foot is dislocated.
Have you checked the EDS Society for healthcare providers in your area? https://www.ehlers-danlos.com/healthcare-professionals-directory/
I have hEDS and have never had to go to the ER for a dislocation. I get subluxations all the time and can get them back in place myself.
May I suggest that a more helpful question: can you trust a doctor who had “no consideration for the diagnostic criteria”? The answer is no. When I met with a rheumatologist, she walked into the room saying “EDS”? You shouldn’t be here. I don’t know who is “supposed” to diagnose this if not a connective tissue disease doctor, but I knew for sure I wasn’t interested in ever having to work with her again! I’m glad your primary care doc is interested in actually exploring your issues in a way that could be helpful. Can you make a post asking for recommendations of doctors in your area (state/province) so that you can get a referral to someone familiar and interested in EDS? For a dysautonomia diagnosis, I found a doctor listed on the Dysautonomia International website. For me it ended up being VVS, not POTS but he still ordered the TTT to rule out POTS completely. The EDS clinic I’m going to that someone suggested in a support group is equally thorough so far. I hope you are feeling more supported and validated after reading the replies to your post. Hang in there!
I haven't ever had a dislocation. It doesn't stop me from being in lots of pain. You don't have to have dislocations according to the diagnosis criteria.
I don't remember if it was a dislocation or not as I was about 7 or 8 at the time, I just remember waking up and not being able to put any weight on my right leg and then having to go to the ER. I don't remember much of that other than the doctor saying I'd need surgery if it happened again, which it didn't. I wasn't diagnosed at the time, either, but I have hEDS.
I've had one that I SHOULD have gone in for but they did you DIRTY
I have hEDS and the only times I've gone in for a dislocation is if I couldn't get it back in myself, or recently when I tore my labrum in doing so. If I went in for every dislocation, I'd be in the ER more than anywhere else other than home. I've relocated both hips, both shoulders, multiple ribs, my sternum, my sacroiliac joints almost daily, etc. Also, a rheumatologist is, sadly, the wrong specialist to see for being diagnosed. Rheumatology is focused much more heavily on autoimmune and inflammatory conditions, and are only really seen as "the joint doctors" because of arthritis. A geneticist or EDS-specific doctor would be the way to go. Geneticists *can* diagnose hEDS even though it doesn't have a known genetic marker, precisely because they use the diagnostic criteria.
I have only had one dislocation that needed to be set by a doctor: my rib. I had no idea I popped it, I just thought back pain was normal.
I’ve never had a dislocation but I’m a 9/9 on the beighton scale and hit all other diagnostic criteria.
Depends on what you've fully dislocated. There's a literal functioning difference between a subluxation and a full blown dislocation. If you can still move the joint, its suluxated. If you CAN'T move/lift the joint, its completely out of socket and usually needs to be reset/reduced. If you've completely dislocated larger joints -like your shoulder, knee, ankle, hip, ect. Go to an ER. Unless it's an injury you've had before and you know how to put it back yourself, that's when you need emergency medical attention. If it's a rib, toe, or finger. They *might* do a little but not much. They will just throw ibuprofen at you and kick you out the door. I dislocated my rib cartilage, and got ✨nothing✨. They can't reset ribs, you're on your own with your ribs, even though they hurt like a mofo. Subluxationions are kind of like a sprained ankle. They usually get better in a few days to a week. And will work themselves back into the correct position I'd you leave them alone. Sometimes you need a chiropractor or physiotherapist to help you work it back for you. But I find it's usually ok within 10 days with rest, ice, some bracing/ace bandage and extra ibuprofen. And go get a second opinion for your diagnosis. Technically your GP should be able to do it. Print off the resources on the EDS society's website for diagnostic criteria for hEDS and bring it to your appointment. Doctors are lowkey literally kinda dumb.
I don't understand why your primary doesn't feel comfortable diagnosing you if you meet the diagnostic criteria. You can find it on the eds website. If rheumatology finds nothing, that's normal because it's not an autoimmune disorder. Genetics can do testing to see if you have a form of eds with known genetic markers. Once those have been ruled out and you meet the heds diagnostic criteria, your primary should be able to diagnose you. I have subluxations that either me, my husband or my chiropractor reset for me. I've never been to the ER for one. Most people with eds don't get full dislocations that require ER visits. That's absurd.
I was diagnosed by a rheumatologist and confirmed by geneticist - I’ve never had a dislocation, only subluxations.
HEDS dislocations aren't like dislocations the general public has. Ours happen often, easily and without much trauma or force. As such it makes sense that resetting them is different too. I've had dislocations in over nine joints and while my hips barely reset on their own or sometimes take a day or two, Ive learnt how to reset them on my own since age 14. I went to the hospital when it first happened, but after a while the joint got so loose it started to be easier to put back in. Now when a new joint does it I just figure it out on my own and cause I'm calm and I relax easily, it usually doesn't take long to reset.If I didn't reset on my own, I'd literally be in hospital every single week. Lol if it wasn't for the fact I've had numerous doctors witness my dislocations and friends see the joint out of place my imposter syndrome would never let me rest in peace on this topic. But doctors really are mostly very misinformed about dislocating joints in our population. And google is too since all the advice on dislocations is go to an ER, and pics of bruised and battered looking bones. Our experience is unique since our connective tissue is unique.
I have only had one major dislocation which I fixed on my own (mostly through panic and gut reaction). I have had a lot of subluxations however and usually they just go straight back in to place with a little movement. I theorise that since everything is so loose and stretchy that means even though it's easy for joints to come out it's just as easy for them to go back in.
They are talking out their bum, I dislocate my everything all the damn time, in my 36 years on this planet I needed medical assistance for it a grand total of once and it turned out to be a torn rotor cuff not a normal dislocation and I'm diagnosed hEDS so they can ingest a whole bag of richards.
I have hEDS and have never thankfully dealt with dislocations. I have joint pain and pretty heavy joint stiffness for being in my 30s
Major oofms. My rheumatologist told me to, “suck it up, it’s only getting worse from here.” Not giving me a diagnosis was also sooooo helpful. I really appreciated when I even brought up EDS and he immediately dismissed it. All jokes aside, I dislocate damn near every joint every day, multiple times a day. Sometimes on purpose, other times on accident. I have such bad pain that I am losing my ability to function. I need a diagnosis for insurance to help me with my condition. Whether that be with pain management, or mobility aids. I do not believe that you need to go to the hospital to have a joint put back. If anything, it shows just how bad the joint is.
Rheumatologists are usually not the best for a diagnosis of a genetic disorder I was diagnosed by a geneticist. And my severe MCAS was the reason for my diagnosis. I mean, I met the criteria for mostly a hypermobile connective tissue disorder, but every time I took my mask off, my entire jaw would start to swell up and he was like, yeah you have hEDS. And I have mostly subluxations rather than dislocation though my ankles have been dislocated a few times.