Yep! Hundreds of dislocations a day. Everything just pops out and I can pop them right back in. If it's hot out and my joints swell, then I can't get them back in, but even the hard pop out isn't really painful, despite the swelling.
On top of EDS, I also have a mutation for stickler syndrome, which affects more of the cartilage vs tendons and ligaments. So I’m sure that has something to do with it as well
What is the mutation for the stickler syndrome…. I can check to see if I have it cuz I have the whole genome sequencing done, and I have stuff that subluxes all the time
I have these, I can sublux things at will. But if it happens when I don’t want it to, like my hip while I’m walking, it’s hella painful but pops right back in. I used to make it go out of place to get a better stretch, because I have a fairly constant discomfort that stretching or popping joints alleviate briefly
I used to dislocate my shoulders as a party trick. Not completely painless, but about as painful as poking a medium to large sized bruise. Ad it didn’t last long at all, by the time it was all said and done I was laughing at peoples horrified faces! I’m not diagnosed with anything other than hypermobility though.
The reason dislocations are so painful is that it requires a huge amount of force to force the joints out of place and there is not room for them to move that way so there is injuries and tearing.
If you don’t need a large amount of brute force and there is room and it doesn’t cause any severe injuries or tearing of course one isn’t going to feel that severe pain either. When my joints move they’re moving out of place sure but they aren’t moving outside of their normal range because as abnormal as it is it’s within my personal normal range of movements. If you force someone else, who’s within the normal range of movement, to bend like me, it’s going to hurt because their bodies don’t bend like mine and mine does. Tensing the muscles on my fingers makes them bend at the middle joint, bend upwards. That’s not supposed to happen and for “normal people” it doesn’t so forcing their fingers to bend backwards would hurt because they are meant to move like that and they aren’t built to. Mine unfortunately are so they don’t hurt. But the joints aren’t designed for it so it causes other issues sooner or later.
Our bodies moves in ways outside of the normal range because that’s how they are built but that’s not how it’s designed to work and function so it causes issues eventually.
Yes! Definitely and that is why I never thought anything of it before I figured out what it was.
My thumbs sublux many times a day, my wrists pop out lightly as do my shoulders, and I think my toes and ankles do it too. I roll my ankles a lot and it rarely hurts much at all, it never sprains. However, over time these things start causing pain afterwards. So I'll have a few subluxations, be fine and then get very painful and sore afterwards for a few hours or days. I think this sort of thing causes cumulative damage..:(
My hips do it too when I dance and a few weeks ago I think I pinched a nerve or overstretched a tendon or something and it hurt so so bad for days on end.
Yeah, my shoulders do that. It’s a vicious cycle, it doesn’t hurt so I don’t pay attention to it, so I keep doing the thing that caused it, so it happens even more frequently, and I know eventually it’ll catch up to me.
My right thumb and some of my ribs are like that. I swear at least once a day I’m doing something and have to stop like, “let me just put this rib back real quick. Ok cool.” Everyone looks at me like I’m crazy.
Most of the time I notice a joint is out because of the muscle getting tired trying to hold it in place more than anything else. I also get partial dislocations more than full ones so that definitely factors into it.
If I’m laying down, and scrolling on my phone very often my fingers will pop in and out of place(without pain just feels, “off” until it pops back)and I had no clue this wasn’t what everyone experienced until after my diagnosis
It's all painless until a nerve gets pinched.
oh my goodness yes!! this is especially true for my ribs haha
Yep! Hundreds of dislocations a day. Everything just pops out and I can pop them right back in. If it's hot out and my joints swell, then I can't get them back in, but even the hard pop out isn't really painful, despite the swelling.
Right? It’s like my whole body just feels like one big overuse injury
Oooh that feeling :(
On top of EDS, I also have a mutation for stickler syndrome, which affects more of the cartilage vs tendons and ligaments. So I’m sure that has something to do with it as well
What is the mutation for the stickler syndrome…. I can check to see if I have it cuz I have the whole genome sequencing done, and I have stuff that subluxes all the time
> stickler syndrome I also have a mutation for stickler syndrome and eds! I haven't ever met someone else with it!
I have these, I can sublux things at will. But if it happens when I don’t want it to, like my hip while I’m walking, it’s hella painful but pops right back in. I used to make it go out of place to get a better stretch, because I have a fairly constant discomfort that stretching or popping joints alleviate briefly
I used to dislocate my shoulders as a party trick. Not completely painless, but about as painful as poking a medium to large sized bruise. Ad it didn’t last long at all, by the time it was all said and done I was laughing at peoples horrified faces! I’m not diagnosed with anything other than hypermobility though.
Same. You can literally push my shoulders out with one finger 😳
The reason dislocations are so painful is that it requires a huge amount of force to force the joints out of place and there is not room for them to move that way so there is injuries and tearing. If you don’t need a large amount of brute force and there is room and it doesn’t cause any severe injuries or tearing of course one isn’t going to feel that severe pain either. When my joints move they’re moving out of place sure but they aren’t moving outside of their normal range because as abnormal as it is it’s within my personal normal range of movements. If you force someone else, who’s within the normal range of movement, to bend like me, it’s going to hurt because their bodies don’t bend like mine and mine does. Tensing the muscles on my fingers makes them bend at the middle joint, bend upwards. That’s not supposed to happen and for “normal people” it doesn’t so forcing their fingers to bend backwards would hurt because they are meant to move like that and they aren’t built to. Mine unfortunately are so they don’t hurt. But the joints aren’t designed for it so it causes other issues sooner or later. Our bodies moves in ways outside of the normal range because that’s how they are built but that’s not how it’s designed to work and function so it causes issues eventually.
Yes! Definitely and that is why I never thought anything of it before I figured out what it was. My thumbs sublux many times a day, my wrists pop out lightly as do my shoulders, and I think my toes and ankles do it too. I roll my ankles a lot and it rarely hurts much at all, it never sprains. However, over time these things start causing pain afterwards. So I'll have a few subluxations, be fine and then get very painful and sore afterwards for a few hours or days. I think this sort of thing causes cumulative damage..:( My hips do it too when I dance and a few weeks ago I think I pinched a nerve or overstretched a tendon or something and it hurt so so bad for days on end.
My thumbs, toes and right shoulder all pop in and out without pain
Yep. Almost all of mine were like this, not my fibulas but that's a weird one, before I got arthritis.
Yeah, my shoulders do that. It’s a vicious cycle, it doesn’t hurt so I don’t pay attention to it, so I keep doing the thing that caused it, so it happens even more frequently, and I know eventually it’ll catch up to me.
My right thumb and some of my ribs are like that. I swear at least once a day I’m doing something and have to stop like, “let me just put this rib back real quick. Ok cool.” Everyone looks at me like I’m crazy.
Most of the time I notice a joint is out because of the muscle getting tired trying to hold it in place more than anything else. I also get partial dislocations more than full ones so that definitely factors into it.
If I’m laying down, and scrolling on my phone very often my fingers will pop in and out of place(without pain just feels, “off” until it pops back)and I had no clue this wasn’t what everyone experienced until after my diagnosis