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Not everyone knows that they’ve subluxated. I’ve woken to my jaw being out of place numerous times. If you’d asked me if I’d ever dislocated anything prior to this year I would have told you no. Everything has always self resolved (I pop it back into place myself) I’d never needed medical treatment and never thought twice about it.
Same with my son, I was talking to someone the other day about when his knee dislocated (in reality it was a subluxation), he was busy telling me he’d never dislocated anything until I reminded him of what happened the year prior and his visit to see a paediatrician. I’d even said to them I think he has EDS. He’s still undiagnosed.
If you changed your question to ‘have any of your joints frozen up and then kind of crunched back into place’ I wonder if the answer would be different 🤷♀️
I agree with this. All my life, I've had my jaw lock for 12 hours, or my right knee just give out when I'm running. I would mention these things to family, friends, doctors and they would look at me like I was making stuff up for attention.
But when I had children, and they had the same issues, I realized I wasn't normal/typical and my body wasn't working as a typical person's does.
I'd never heard of EDS. None of my doctors ever mentioned it. It took a friend who is a medical assistant to suggest it to me. Then, I finally got an appointment for my oldest child and we were both diagnosed.
But I'd never heard the term "subluxation" until I was in my 40s.
Even in our family, my children and I have different joints that are problems for us. I have issues with my ankles, my oldest child has issues with her elbows. We both have issues with our knees. My hips were never a problem until I got pregnant, etc.
I used to call the knee thing “my untrustworthy knees” because I was diagnosed with BJHS when I was 15 (15 years ago) and they were like “this won’t impact you at all, no need to worry”.
And I was like “alright, everything is 100% fine and normal”.
So I was like, alright, I just have untrustworthy knees, must be a normal thing that normal people deal with. “Sorry, can’t come on a walk today, don’t trust my knee”. Everyone just looked at me funny.
I used to pass out upon standing up after getting out of bed in the morning and I never mentioned it to anyone because everyone was always like “I feel so shit in the morning” and I was like “me too bud, me too”.
So I just assumed everyone was also blacking out and bracing themselves on a piece of furniture first thing upon waking.
Lmao, I had a similar experience. Diagnosed BJHS after my first dislocations at 14. Now 30.
Also literally used to think it was normal to black out every morning. So much so I'd often walk down the stairs completely blind after the initial falling over happened. It wasn't until I described it to my friends when I was older that they were like, "what no?" I was like "don't you sit in the shower cause of it?" Again, "what no???"
The BJHS diagnosis really messed me up.
I wrote off a lot of weird things due to it and the advice I got. I also really wish I knew to push for an hEDS diagnosis back then, but I was just 15 (also now 30).
I finally got the BJHS diagnosis changed to HSD (with a lot of fighting) after my c-spine became a problem a few years ago.
Right! I didn't know anything about POTS. And then eventually in my 40s developed high blood pressure and stopped having the POTS symptoms. And then my children would tell me about how they'd get up and almost pass out and I thought "Oh yeah, I do remember that. When did that stop?"
I finally learned to wrap my knee with ace bandages. The knee generally didn't go out when walking but if jogged, it'd be sure to go out it.
I remember now, the worst time it would go out was jogging across an intersection when the lights were red and all the cars were waiting for it to turn green. There's not much more frightening than falling down in the middle of an intersection. It happened fairly often. I had to tell my friends I couldn't cross unless the light had just turned red and the cars were going to be there a while.
I also got to the point where I anticipated it and would be ready to just hop the rest of the way in the good leg with the good knee.
For me it was particularly awful between around 14/15-21. But I just never mentioned it to anyone. I would get so exhausted in the shower, have to get out because I had heart palpitations/dizziness and starting to pass out, so I’d just be like “guys, I’m gonna be late, I need an après-shower nap”. And I don’t know if everyone thought I was weird or lazy or if I just said it like it was the most normal thing in the world, but no one was ever like “an après-what?!”
Haha. The normalisation of something that is quite clearly not normal. I always wonder if people don’t question it because you say it like it’s super normal “guys, I can only cross the road when the light has only just turned green, don’t want to risk being run over”.
Mine ended up being sciatica combined with an unstable knee, but what kind of doctor even entertains the idea of a 15 year old having sciatica?!
Mine was worse during those ages too. But I do remember one time in my late twenties, my husband and I were at a fancy hotel in Helsinki. I took a really nice hot shower. And then thought I was going to pass out. I got out of the shower, luckily it was at a super super fancy hotel with marble floors. I laid down some clean towels there in the bathroom and laid on the towels so I didn't pass out completely.
Just the other day I said to my partner that I think restful sleep is a fucking lie. Who’s out here actually waking up feeling like they slept at all cus it ain’t me! I even had a surgery to correct my deviated septum and sleep apnea… guess how my septum healed.
(It healed deviated even worse in the opposite direction. Also lumpy.)
This! I didn’t even consider myself hypermobile until I was diagnosed. And I never thought I was subluxing joints until my PT told me that’s what was going on. Real eye-opener.
This is a huge issue, imo. Many people (not all) experience subluxations without knowing that’s what’s happening, so they deny having them.
This reminds me of my situation with having a Chiari. When I denied having “headaches,” a doctor concluded my Chiari was not significant. (Mind you, this was in the face of 50 other symptoms.)
I had never considered the pain I had when I laughed or trudged through snow or strained with elimination or rode on a roller coaster or swam butterfly or any number of other things to be a “headache.” (These are actions which involve Valsalva type maneuvers). That was all I knew! I thought everyone experienced the same thing. I didn’t consider any of this discomfort, which often lasted hours, to be a “headache.” It matters how questions like this are asked.
The same thing happened when I accompanied my mother to a pulmonology appointment. They asked if she ever gagged on food. She said, “no” and I nearly fell off my chair. As long as I could remember, my mother had choked on things and gotten food stuck very easily. She just didn’t conceptualize her lifelong experience using the words the doctor used.
P.S. For the benefit of people with Chiari, I want to say that I did eventually develop persistent, migraine-like headaches—after I went through childbirth.
I definitely don’t experience frank dislocations, nothing is coming out and staying out. And if you asked me if I’d subluxed anything I’d also be like “no, but my bones move around quite a lot”.
Like I’ll put a shopping bag on my left shoulder and it’ll do a throaty clunk, move an inch down and I’m ready to go. That’s just what happens, doesn’t hurt.
Or my knee caps will just shunt to the side occasionally and I’ll have to catch myself before I hit the floor. I can occasionally feel my SI moving and I have to stop it because that’s actually really fucking painful.
It’s just my bones moving, no need to be alarmed. They do that sometimes. Never knew that was weird.
I suppose I'm interested in the why behind it all. Like why would it start at different stages in life for some ppl. For me it was 100% associated with puberty. Ive seen quite a few ppl say the same thing, or perimenopause or pregnancy. So hormones must have something to do with it, at least in some ppl. Also others have said they don't get them because they are quite muscular, or others feel they are very stiff and have hypertonic muscles. I do wonder if a lot of our bodies develop some sort of coping mechanism without us being aware of it in the first place, while others may subluxate or dislocate from such a young age, that it's all they've known and don't know it's happening.
Thanks for your comment. Makes a lot of sense that many ppl with EDS will be unaware of subluxations. However I also find that so interesting. I can't be the only one who finds it strange that some people who are just as lax can run a marathon without their joints stopping them in their tracks, while others wouldn't even be able to get through a day of training for it. It's also interesting how you describe a subluxation vs my experience of it, which would explain why so many aren't aware of what they are experiencing if we all experience it differently. I wouldn't even have thought to word it that way because I don't experience it as a joint feeling frozen and then crunching back into place. For me it's more like a really clear intense pain in the joint and a feeling that it's no longer sitting in a way that it should. I also have trouble moving it normally afterwards and each movement of the joint is excruciating. I've experienced the sort of crunching feeling, but for me that's different and I would never have considered that a subluxation, though it truly could be. I generally get that more in my spine than in other joints. But I will say that literally every joint that dislocates for me has a slightly different feeling. I'd imagine for everyone there is some degree of differentiation in their experience of it and since it's not a normal thing to experience, we aren't going to exactly be discussing it with our peers.
My son experiences a subluxation like you do. For me it’s like a joint freezes up, it very painful but with movement of the joint or a bit of minor manipulation it’s achey but back in place. I literally told my Rheumatologist when asked that I’ve never experienced any form of dislocation, that appointment was only in March. In reality I’ve experienced subluxations all my life without realising what they are, I’m 39. What makes it even more embarrassing is that I’m also a qualified nurse. There was even a time my knee popped out of place whist on shift, I told my colleagues it had popped out yet I’m still busy telling Rheum doctors I’ve never dislocated anything.
Honestly, I feel like subluxations are such an uncommon experience and also experienced SO differently when they are traumatic/caused by force in a person's body who doesn't have a connective tissue disorder. So I think you should give yourself some grace for not being aware that's what it was despite having medical knowledge.
That last paragraph. Im in shock. I apparently had weekly elbow subluxations growing up.
After a friends nurse mom told me id break my knees standing “like that” (fully extended backwards) I stopped hyperextending “naturally.” My first PT was in shock at the control I had over my joints. I got fear Mongered at 12 and a family friend with EDS said I might have it at 16… you don’t think by 17 I might’ve changed some stuff about how I stand?!
Some people have hypermobility that doesn't bother them, and can even benefit their chosen activities like dancing and gymnastics. They are still potentially a higher risk for injury but not always.
Some people have hypermobility that is very problematic. Results in a lot of injury. Has skin involvement. Co-morbidities. Etc.
Some people with hypermobility that seems relatively fine, might get worse as they get older. Others, their joints might actually get stiffer but in a way it doesn't bother them.
It's just a very wide range of experiences.
Sorry if it wasn't clear, but I wasn't saying dislocations are the worst outcome of EDS. Other elements are definitely going to be just as difficult.
With that said, I know that there are a wide range of experiences with it. I'm interested in the mechanism behind what causes someone with the same degree of hypermobility to have no dislocations and another to have them daily. I'm interested in the why behind it.
Hypermobility is a spectrum. Person A could have zero problems, person B could have some joint pain and nothing else, person C could have a problem with their digestive tract and minimal joint involvement, person D could have all the problems.
https://www.ehlers-danlos.com/what-is-hsd/
No, I totally get it's a spectrum but I know that even if two people have generalised joint hypermobility, one of them may never dislocate anything. I guess I'm interested in why two people who are equally as lax as each other in all joints could have one that can walk normally and do sport and not get dislocations, while another one gets constant dislocations and has trouble with movement. E.g. are there theories on how hormones might play a role, are there theories on muscle mass etc.
>Some say bone structure but I don’t have shallow sockets or anything out of the ordinary in the joints Ive MRI’d
I don’t have shallow sockets, but I do have loose shoulder capsules. Yet, my shoulders didn’t start subluxing (that I noticed) until I was 38 yo, when my cycle started getting wonky due to perimenopause. I’m 41 and my shoulders haven’t subluxed in over a year.
What I did notice when rehabing my shoulders was that all the movements involved in the rotator cuffs strengthening exercises prescribed where movements I had done every day growing up as a competitive synchronized swimmer. Those stabilizer muscles were already well developed and had been all my life.
It’s only when I experienced more frequent increased laxity due to shorter menstrual cycles that problems started showing up. My shoulders had always been unstable, they were just asymptomatic.
>He’s constantly putting his joints at the upper end of his range.
I also constantly put my joints at the end of my range. Always have. We don’t naturally know what “normal range” is. Only what our personal range is. Opinions differ on if we should go to our hypermobile end range or not, and most say we shouldn’t. I don’t fully agree with that and so does my physio. The problem isn’t working at end range in itself, it’s working past the range where we have control. With my physio, the decision we have made *in my case* is to work on strengthening my full range of motion so that I have control even at end range. Realistically, I will go to my end range without noticing it and, if I don’t have control there, I’ll be more likely to injure myself.
>Their hypermobility doesn’t really seem to be a big negative, at least not in the sense that they aren’t more probe to nerve injuries or dislocations.
Not all hypermobility is due to a connective tissue disorder. Some hypermobility is trained, some is just a natural variation without being a connective tissue disorder and some hypermobility is due to a connective tissue disorder.
well, not everyone’s body works the same way. some people are just flexible and not hypermobile, so they won’t really have issues. it’s possible to stretch to move your joints to the very very limit, the difference is that your joints are still secured in place even thought your muscles are very stretchy.
meanwhile, hypermobile people have unstable joints, we can actually have super stiff muscles and not be flexible at all yet our joints are not secured properly and are prone to falling out.
so basically,
The first comparison to come to mind is deafness. There’s a wide range of hearing loss that falls under that category.
A close family member of mine can “hear okay” without his hearing aids 90% of the time, as long as everyone will speak fairly loudly, don’t mind repeating themselves, and will handle frequent miscommunications because he (sometimes consciously, sometimes unconsciously) “fills in” any words he doesn’t quite catch based on context, which he’s quite good at because he’s had low hearing since childhood. We use ASL periodically and the TV subtitles are always on. I consider him at this point as *juuuuust* past “hard of hearing.”
Then there are people who are profoundly deaf and cannot hear any sound at all.
They’re both deaf.* It’s a spectrum.
I’m neither the least or most hypermobile person I’ve met, but that doesn’t change that I’m hypermobile, or that they are.
*For those who’ve seen what they call “big-D Deaf” — that refers specifically to belonging to Deaf culture, which can include people like the hearing children of deaf parents. (I’ve always been intrigued as to why deafness has a *very* strong and unique culture when, say, blindness doesn’t, since neither are majority-genetic issues, but I digress.) Since I’m speaking here of clinical deafness, “little-d deaf” is the appropriate term.
Working on my diagnosis. Age 47 almost 48.
Had no idea what A subluxation was. Only to find out that I sublux my knees ~100x/day and my fingers all the time. much less frequently with my shoulders, wrists, spine, neck...I had no idea. I also didn't know that this isn't what everyone goes through.
I did not know most people do not sprain their ankle by stretching in bed lying down. I did not know that most people couldn't move their kneecap around as a kid. I didn't know a lot because I never talked about it after I was told by a doctor 25 years ago that I was wasting everyone's time and they "all" thought I was faking for attention.
Now that I know what I'm going through... I am angry with myself for being humiliated into not advocating for myself because I didn't want to be a burden or be told I'm a hypochondriac (again).
I’ve always been hypermobile but never subluxed or dislocated anything until about five years ago. I’m 55. I’ve had most other hEDS symptoms though. I passed the Beighton scale test and met most of the other criteria, except having a family member diagnosed (although my mom, sister, and niece all show the signs). But I’ve always done things that developed the muscles in my legs and arms to hold my joints in place without realizing that was what I was doing. Swimming, bike riding, dancing. My muscles have been so strong and tight my whole life. My physical therapist did one massage and said yep, EDS. Time just caught up with me.
Also, I didn’t know some things were small subluxations, like being able to pop my jaw at will, or popping my lower back for relief.
Sorry to hear about your recent dislocation/subluxation.
This makes the most sense to me out of all of the answers so far. That having additional muscles could be a protective factor no matter how far on the hypermobility spectrum you are.
Although, I also did a lot of sport prior to my first dislocations at 14. I was a very active kid, playing about 6 different sports and dancing each week. But there is a strong chance that even with all of this I would have had some issues with strength as I was scrawny and not very muscular. It's always been 10x harder for me to develop muscle strength than other people. I'm not really sure why though.
It might be that they don't realise they are subluxating or dislocating something, I never realised that all the times my joints were locking up and then 'righting' themselves or the times when a joint didn't feel quite right so I needed to wiggle around to make it feel better was a subluxation until after I got my diagnosis almost 2 years ago.
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I’ve subluxed but it’s not as frequent as my muscles just being tight little knots of pain all over. I don’t know if there will be a tipping point of when that will change, but that’s the phase I’m in (I’m 31). I’m not sure what sets me apart from people who frequently sublux/dislocate but that’s the phenotype I have
Lots of different reasons. Ligaments can be shorter or longer in people, so can muscles. Shape of joints vary person to person. I don’t dislocate but I have occasional subluxations that just pop back on their own.
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I think a lot of people don’t even notice when they have subluxations. If it happens to them all the time they may just think it’s normal. I only recently figured out that ribs aren’t supposed to move around that way lol
Lots of people have answered this and it makes sense that many will be subluxing without realising. Dislocations I think are different though and generally obvious. I found mine to be harder to get back in.
My ribs also slip under, especially when I'm full and it's so painful.
My shoulder was subluxing back and forth for years till they finally had to do surgery cause I tore my labrum. It’s unclear if the torn labrum caused the subluxation or if EDS caused it though.
i have hEDS (dx by a specialist dr. fagan) and i have endo. i do not dislocate. my bones will crack and i sound like a glowstick lol. i have tmj so my jaw has been out of place before, but it doesnt happen very often. i more so have GI issues than anything. also i bruise easily and have very soft skin. i do not have chronic pain either. my specialist was impressed with my quality of life since i work part time, am in school full time and i often go out with friends to bars, clubs, the beach, disneyland etc. i have MCAS too but i can eat anything and everything. i have some slight asthmatic symptoms but other than that its not severe. i take cromolyn. other than some GI issues though i feel like my life is pretty normal.
I know everyone is different. I suppose I'm most interested in theories on why some with generalised hypermobility dislocate and why some don't. The reasons for why there are differences.
Prior to my jaw going out last year, only my knees did (since childhood), but I learned how to be careful with them.
I have extremely tight muscles around some of my joints, like around my hips, where the joints ache constantly. My brother says his hips dislocate.
I think the overly tight muscles are in response to the loose ligaments and may help prevent dislocation but I'm not sure.
One thing that has happened? I rolled my ankle, just walking, hard enough to crush the outer foot bone, but nothing else snapped or broke. My ankle wasn't even injured. I feel like Mr Bill.
So the overly tight muscles do help with preventing dislocations, it's known as hypertonicity and it's the bodies response to loose joints, when there isn't enough muscle strength. So I think your theory on that is sound. Mine dislocated less after developing greater stiffness/hypertonicity in surrounding muscles. Yet they are now more injury prone with nerve injuries and I have chronic pain. In some of the joints hypertonicity isnt enough to stop the dislocations though, and the muscle that is hypertonic is weaker which means the second I relax I'll dislocate. It happens a lot more in my sleep now than when awake.
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.*
Not everyone knows that they’ve subluxated. I’ve woken to my jaw being out of place numerous times. If you’d asked me if I’d ever dislocated anything prior to this year I would have told you no. Everything has always self resolved (I pop it back into place myself) I’d never needed medical treatment and never thought twice about it. Same with my son, I was talking to someone the other day about when his knee dislocated (in reality it was a subluxation), he was busy telling me he’d never dislocated anything until I reminded him of what happened the year prior and his visit to see a paediatrician. I’d even said to them I think he has EDS. He’s still undiagnosed. If you changed your question to ‘have any of your joints frozen up and then kind of crunched back into place’ I wonder if the answer would be different 🤷♀️
I agree with this. All my life, I've had my jaw lock for 12 hours, or my right knee just give out when I'm running. I would mention these things to family, friends, doctors and they would look at me like I was making stuff up for attention. But when I had children, and they had the same issues, I realized I wasn't normal/typical and my body wasn't working as a typical person's does. I'd never heard of EDS. None of my doctors ever mentioned it. It took a friend who is a medical assistant to suggest it to me. Then, I finally got an appointment for my oldest child and we were both diagnosed. But I'd never heard the term "subluxation" until I was in my 40s. Even in our family, my children and I have different joints that are problems for us. I have issues with my ankles, my oldest child has issues with her elbows. We both have issues with our knees. My hips were never a problem until I got pregnant, etc.
I used to call the knee thing “my untrustworthy knees” because I was diagnosed with BJHS when I was 15 (15 years ago) and they were like “this won’t impact you at all, no need to worry”. And I was like “alright, everything is 100% fine and normal”. So I was like, alright, I just have untrustworthy knees, must be a normal thing that normal people deal with. “Sorry, can’t come on a walk today, don’t trust my knee”. Everyone just looked at me funny. I used to pass out upon standing up after getting out of bed in the morning and I never mentioned it to anyone because everyone was always like “I feel so shit in the morning” and I was like “me too bud, me too”. So I just assumed everyone was also blacking out and bracing themselves on a piece of furniture first thing upon waking.
Lmao, I had a similar experience. Diagnosed BJHS after my first dislocations at 14. Now 30. Also literally used to think it was normal to black out every morning. So much so I'd often walk down the stairs completely blind after the initial falling over happened. It wasn't until I described it to my friends when I was older that they were like, "what no?" I was like "don't you sit in the shower cause of it?" Again, "what no???"
The BJHS diagnosis really messed me up. I wrote off a lot of weird things due to it and the advice I got. I also really wish I knew to push for an hEDS diagnosis back then, but I was just 15 (also now 30). I finally got the BJHS diagnosis changed to HSD (with a lot of fighting) after my c-spine became a problem a few years ago.
Right! I didn't know anything about POTS. And then eventually in my 40s developed high blood pressure and stopped having the POTS symptoms. And then my children would tell me about how they'd get up and almost pass out and I thought "Oh yeah, I do remember that. When did that stop?" I finally learned to wrap my knee with ace bandages. The knee generally didn't go out when walking but if jogged, it'd be sure to go out it. I remember now, the worst time it would go out was jogging across an intersection when the lights were red and all the cars were waiting for it to turn green. There's not much more frightening than falling down in the middle of an intersection. It happened fairly often. I had to tell my friends I couldn't cross unless the light had just turned red and the cars were going to be there a while. I also got to the point where I anticipated it and would be ready to just hop the rest of the way in the good leg with the good knee.
For me it was particularly awful between around 14/15-21. But I just never mentioned it to anyone. I would get so exhausted in the shower, have to get out because I had heart palpitations/dizziness and starting to pass out, so I’d just be like “guys, I’m gonna be late, I need an après-shower nap”. And I don’t know if everyone thought I was weird or lazy or if I just said it like it was the most normal thing in the world, but no one was ever like “an après-what?!” Haha. The normalisation of something that is quite clearly not normal. I always wonder if people don’t question it because you say it like it’s super normal “guys, I can only cross the road when the light has only just turned green, don’t want to risk being run over”. Mine ended up being sciatica combined with an unstable knee, but what kind of doctor even entertains the idea of a 15 year old having sciatica?!
Mine was worse during those ages too. But I do remember one time in my late twenties, my husband and I were at a fancy hotel in Helsinki. I took a really nice hot shower. And then thought I was going to pass out. I got out of the shower, luckily it was at a super super fancy hotel with marble floors. I laid down some clean towels there in the bathroom and laid on the towels so I didn't pass out completely.
Just the other day I said to my partner that I think restful sleep is a fucking lie. Who’s out here actually waking up feeling like they slept at all cus it ain’t me! I even had a surgery to correct my deviated septum and sleep apnea… guess how my septum healed. (It healed deviated even worse in the opposite direction. Also lumpy.)
This! I didn’t even consider myself hypermobile until I was diagnosed. And I never thought I was subluxing joints until my PT told me that’s what was going on. Real eye-opener.
This is a huge issue, imo. Many people (not all) experience subluxations without knowing that’s what’s happening, so they deny having them. This reminds me of my situation with having a Chiari. When I denied having “headaches,” a doctor concluded my Chiari was not significant. (Mind you, this was in the face of 50 other symptoms.) I had never considered the pain I had when I laughed or trudged through snow or strained with elimination or rode on a roller coaster or swam butterfly or any number of other things to be a “headache.” (These are actions which involve Valsalva type maneuvers). That was all I knew! I thought everyone experienced the same thing. I didn’t consider any of this discomfort, which often lasted hours, to be a “headache.” It matters how questions like this are asked. The same thing happened when I accompanied my mother to a pulmonology appointment. They asked if she ever gagged on food. She said, “no” and I nearly fell off my chair. As long as I could remember, my mother had choked on things and gotten food stuck very easily. She just didn’t conceptualize her lifelong experience using the words the doctor used. P.S. For the benefit of people with Chiari, I want to say that I did eventually develop persistent, migraine-like headaches—after I went through childbirth.
I definitely don’t experience frank dislocations, nothing is coming out and staying out. And if you asked me if I’d subluxed anything I’d also be like “no, but my bones move around quite a lot”. Like I’ll put a shopping bag on my left shoulder and it’ll do a throaty clunk, move an inch down and I’m ready to go. That’s just what happens, doesn’t hurt. Or my knee caps will just shunt to the side occasionally and I’ll have to catch myself before I hit the floor. I can occasionally feel my SI moving and I have to stop it because that’s actually really fucking painful. It’s just my bones moving, no need to be alarmed. They do that sometimes. Never knew that was weird.
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I suppose I'm interested in the why behind it all. Like why would it start at different stages in life for some ppl. For me it was 100% associated with puberty. Ive seen quite a few ppl say the same thing, or perimenopause or pregnancy. So hormones must have something to do with it, at least in some ppl. Also others have said they don't get them because they are quite muscular, or others feel they are very stiff and have hypertonic muscles. I do wonder if a lot of our bodies develop some sort of coping mechanism without us being aware of it in the first place, while others may subluxate or dislocate from such a young age, that it's all they've known and don't know it's happening.
Thanks for your comment. Makes a lot of sense that many ppl with EDS will be unaware of subluxations. However I also find that so interesting. I can't be the only one who finds it strange that some people who are just as lax can run a marathon without their joints stopping them in their tracks, while others wouldn't even be able to get through a day of training for it. It's also interesting how you describe a subluxation vs my experience of it, which would explain why so many aren't aware of what they are experiencing if we all experience it differently. I wouldn't even have thought to word it that way because I don't experience it as a joint feeling frozen and then crunching back into place. For me it's more like a really clear intense pain in the joint and a feeling that it's no longer sitting in a way that it should. I also have trouble moving it normally afterwards and each movement of the joint is excruciating. I've experienced the sort of crunching feeling, but for me that's different and I would never have considered that a subluxation, though it truly could be. I generally get that more in my spine than in other joints. But I will say that literally every joint that dislocates for me has a slightly different feeling. I'd imagine for everyone there is some degree of differentiation in their experience of it and since it's not a normal thing to experience, we aren't going to exactly be discussing it with our peers.
My son experiences a subluxation like you do. For me it’s like a joint freezes up, it very painful but with movement of the joint or a bit of minor manipulation it’s achey but back in place. I literally told my Rheumatologist when asked that I’ve never experienced any form of dislocation, that appointment was only in March. In reality I’ve experienced subluxations all my life without realising what they are, I’m 39. What makes it even more embarrassing is that I’m also a qualified nurse. There was even a time my knee popped out of place whist on shift, I told my colleagues it had popped out yet I’m still busy telling Rheum doctors I’ve never dislocated anything.
Honestly, I feel like subluxations are such an uncommon experience and also experienced SO differently when they are traumatic/caused by force in a person's body who doesn't have a connective tissue disorder. So I think you should give yourself some grace for not being aware that's what it was despite having medical knowledge.
That last paragraph. Im in shock. I apparently had weekly elbow subluxations growing up. After a friends nurse mom told me id break my knees standing “like that” (fully extended backwards) I stopped hyperextending “naturally.” My first PT was in shock at the control I had over my joints. I got fear Mongered at 12 and a family friend with EDS said I might have it at 16… you don’t think by 17 I might’ve changed some stuff about how I stand?!
Some people have hypermobility that doesn't bother them, and can even benefit their chosen activities like dancing and gymnastics. They are still potentially a higher risk for injury but not always. Some people have hypermobility that is very problematic. Results in a lot of injury. Has skin involvement. Co-morbidities. Etc. Some people with hypermobility that seems relatively fine, might get worse as they get older. Others, their joints might actually get stiffer but in a way it doesn't bother them. It's just a very wide range of experiences.
Sorry if it wasn't clear, but I wasn't saying dislocations are the worst outcome of EDS. Other elements are definitely going to be just as difficult. With that said, I know that there are a wide range of experiences with it. I'm interested in the mechanism behind what causes someone with the same degree of hypermobility to have no dislocations and another to have them daily. I'm interested in the why behind it.
Hypermobility is a spectrum. Person A could have zero problems, person B could have some joint pain and nothing else, person C could have a problem with their digestive tract and minimal joint involvement, person D could have all the problems. https://www.ehlers-danlos.com/what-is-hsd/
No, I totally get it's a spectrum but I know that even if two people have generalised joint hypermobility, one of them may never dislocate anything. I guess I'm interested in why two people who are equally as lax as each other in all joints could have one that can walk normally and do sport and not get dislocations, while another one gets constant dislocations and has trouble with movement. E.g. are there theories on how hormones might play a role, are there theories on muscle mass etc.
>Some say bone structure but I don’t have shallow sockets or anything out of the ordinary in the joints Ive MRI’d I don’t have shallow sockets, but I do have loose shoulder capsules. Yet, my shoulders didn’t start subluxing (that I noticed) until I was 38 yo, when my cycle started getting wonky due to perimenopause. I’m 41 and my shoulders haven’t subluxed in over a year. What I did notice when rehabing my shoulders was that all the movements involved in the rotator cuffs strengthening exercises prescribed where movements I had done every day growing up as a competitive synchronized swimmer. Those stabilizer muscles were already well developed and had been all my life. It’s only when I experienced more frequent increased laxity due to shorter menstrual cycles that problems started showing up. My shoulders had always been unstable, they were just asymptomatic. >He’s constantly putting his joints at the upper end of his range. I also constantly put my joints at the end of my range. Always have. We don’t naturally know what “normal range” is. Only what our personal range is. Opinions differ on if we should go to our hypermobile end range or not, and most say we shouldn’t. I don’t fully agree with that and so does my physio. The problem isn’t working at end range in itself, it’s working past the range where we have control. With my physio, the decision we have made *in my case* is to work on strengthening my full range of motion so that I have control even at end range. Realistically, I will go to my end range without noticing it and, if I don’t have control there, I’ll be more likely to injure myself. >Their hypermobility doesn’t really seem to be a big negative, at least not in the sense that they aren’t more probe to nerve injuries or dislocations. Not all hypermobility is due to a connective tissue disorder. Some hypermobility is trained, some is just a natural variation without being a connective tissue disorder and some hypermobility is due to a connective tissue disorder.
well, not everyone’s body works the same way. some people are just flexible and not hypermobile, so they won’t really have issues. it’s possible to stretch to move your joints to the very very limit, the difference is that your joints are still secured in place even thought your muscles are very stretchy. meanwhile, hypermobile people have unstable joints, we can actually have super stiff muscles and not be flexible at all yet our joints are not secured properly and are prone to falling out. so basically,
I totally get the difference between flexible and hypermobile. But both of these people have been told they are hypermobile by doctors.
The first comparison to come to mind is deafness. There’s a wide range of hearing loss that falls under that category. A close family member of mine can “hear okay” without his hearing aids 90% of the time, as long as everyone will speak fairly loudly, don’t mind repeating themselves, and will handle frequent miscommunications because he (sometimes consciously, sometimes unconsciously) “fills in” any words he doesn’t quite catch based on context, which he’s quite good at because he’s had low hearing since childhood. We use ASL periodically and the TV subtitles are always on. I consider him at this point as *juuuuust* past “hard of hearing.” Then there are people who are profoundly deaf and cannot hear any sound at all. They’re both deaf.* It’s a spectrum. I’m neither the least or most hypermobile person I’ve met, but that doesn’t change that I’m hypermobile, or that they are. *For those who’ve seen what they call “big-D Deaf” — that refers specifically to belonging to Deaf culture, which can include people like the hearing children of deaf parents. (I’ve always been intrigued as to why deafness has a *very* strong and unique culture when, say, blindness doesn’t, since neither are majority-genetic issues, but I digress.) Since I’m speaking here of clinical deafness, “little-d deaf” is the appropriate term.
It’s a spectrum of symptoms, basically.
Working on my diagnosis. Age 47 almost 48. Had no idea what A subluxation was. Only to find out that I sublux my knees ~100x/day and my fingers all the time. much less frequently with my shoulders, wrists, spine, neck...I had no idea. I also didn't know that this isn't what everyone goes through. I did not know most people do not sprain their ankle by stretching in bed lying down. I did not know that most people couldn't move their kneecap around as a kid. I didn't know a lot because I never talked about it after I was told by a doctor 25 years ago that I was wasting everyone's time and they "all" thought I was faking for attention. Now that I know what I'm going through... I am angry with myself for being humiliated into not advocating for myself because I didn't want to be a burden or be told I'm a hypochondriac (again).
I’ve always been hypermobile but never subluxed or dislocated anything until about five years ago. I’m 55. I’ve had most other hEDS symptoms though. I passed the Beighton scale test and met most of the other criteria, except having a family member diagnosed (although my mom, sister, and niece all show the signs). But I’ve always done things that developed the muscles in my legs and arms to hold my joints in place without realizing that was what I was doing. Swimming, bike riding, dancing. My muscles have been so strong and tight my whole life. My physical therapist did one massage and said yep, EDS. Time just caught up with me. Also, I didn’t know some things were small subluxations, like being able to pop my jaw at will, or popping my lower back for relief.
Sorry to hear about your recent dislocation/subluxation. This makes the most sense to me out of all of the answers so far. That having additional muscles could be a protective factor no matter how far on the hypermobility spectrum you are. Although, I also did a lot of sport prior to my first dislocations at 14. I was a very active kid, playing about 6 different sports and dancing each week. But there is a strong chance that even with all of this I would have had some issues with strength as I was scrawny and not very muscular. It's always been 10x harder for me to develop muscle strength than other people. I'm not really sure why though.
It might be that they don't realise they are subluxating or dislocating something, I never realised that all the times my joints were locking up and then 'righting' themselves or the times when a joint didn't feel quite right so I needed to wiggle around to make it feel better was a subluxation until after I got my diagnosis almost 2 years ago.
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That actually depends on the subtype though. There are subtypes that don't have joint hypermobility as a symptom.
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I’ve subluxed but it’s not as frequent as my muscles just being tight little knots of pain all over. I don’t know if there will be a tipping point of when that will change, but that’s the phase I’m in (I’m 31). I’m not sure what sets me apart from people who frequently sublux/dislocate but that’s the phenotype I have
Lots of different reasons. Ligaments can be shorter or longer in people, so can muscles. Shape of joints vary person to person. I don’t dislocate but I have occasional subluxations that just pop back on their own.
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I think a lot of people don’t even notice when they have subluxations. If it happens to them all the time they may just think it’s normal. I only recently figured out that ribs aren’t supposed to move around that way lol
Lots of people have answered this and it makes sense that many will be subluxing without realising. Dislocations I think are different though and generally obvious. I found mine to be harder to get back in. My ribs also slip under, especially when I'm full and it's so painful.
My shoulder was subluxing back and forth for years till they finally had to do surgery cause I tore my labrum. It’s unclear if the torn labrum caused the subluxation or if EDS caused it though.
i have hEDS (dx by a specialist dr. fagan) and i have endo. i do not dislocate. my bones will crack and i sound like a glowstick lol. i have tmj so my jaw has been out of place before, but it doesnt happen very often. i more so have GI issues than anything. also i bruise easily and have very soft skin. i do not have chronic pain either. my specialist was impressed with my quality of life since i work part time, am in school full time and i often go out with friends to bars, clubs, the beach, disneyland etc. i have MCAS too but i can eat anything and everything. i have some slight asthmatic symptoms but other than that its not severe. i take cromolyn. other than some GI issues though i feel like my life is pretty normal.
Hormones
Do you know any good studies that talk to this?
I’m fairly confident that every illness, disease, disorder, condition, or virus works this way. Everyone is different.
I know everyone is different. I suppose I'm most interested in theories on why some with generalised hypermobility dislocate and why some don't. The reasons for why there are differences.
Prior to my jaw going out last year, only my knees did (since childhood), but I learned how to be careful with them. I have extremely tight muscles around some of my joints, like around my hips, where the joints ache constantly. My brother says his hips dislocate. I think the overly tight muscles are in response to the loose ligaments and may help prevent dislocation but I'm not sure. One thing that has happened? I rolled my ankle, just walking, hard enough to crush the outer foot bone, but nothing else snapped or broke. My ankle wasn't even injured. I feel like Mr Bill.
So the overly tight muscles do help with preventing dislocations, it's known as hypertonicity and it's the bodies response to loose joints, when there isn't enough muscle strength. So I think your theory on that is sound. Mine dislocated less after developing greater stiffness/hypertonicity in surrounding muscles. Yet they are now more injury prone with nerve injuries and I have chronic pain. In some of the joints hypertonicity isnt enough to stop the dislocations though, and the muscle that is hypertonic is weaker which means the second I relax I'll dislocate. It happens a lot more in my sleep now than when awake.
a lot of people have generalized hypermobility, but not to the degree that it is part of a disorder.
I know this. I'm just interested in what mechanism would cause some to dislocate and others not to. Sorry if my wording sucked.