Joint Hypermobility Syndrome Watch

DeceitfulDove
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Anyone have any experiences of this? I have it and the pain is getting slowly worse. My jaw, shoulders, knees and collarbone are affected, but the ones causing pain are the right shoulder and both sides of collarbone.

The clavicle subluxation is new, they both popped out about a fortnight ago, that was a really odd sensation. Went to the doctors who told me to go to have a full joint laxity assessment the next day at physio. Went to physio and he looked at my joints and went 'no, you don't need physio, you need more specialist opinions' and am now on list to see musculoskeletal team (which according to some swimmers I know may take up to a year)

Anyone else jiggly jointed?
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Friar Chris
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:tumble:

Poor Jenna!
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DeceitfulDove
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(Original post by Friar Chris)
:tumble:

Poor Jenna!
Aite kid Stop calling me by my name heeere :unimpressed:
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keturah
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(Original post by DeceitfulDove)
Anyone have any experiences of this? I have it and the pain is getting slowly worse. My jaw, shoulders, knees and collarbone are affected, but the ones causing pain are the right shoulder and both sides of collarbone.

The clavicle subluxation is new, they both popped out about a fortnight ago, that was a really odd sensation. Went to the doctors who told me to go to have a full joint laxity assessment the next day at physio. Went to physio and he looked at my joints and went 'no, you don't need physio, you need more specialist opinions' and am now on list to see musculoskeletal team (which according to some swimmers I know may take up to a year)

Anyone else jiggly jointed?
I have it too. I'm currently seeing knee, jaw and shoulder specialist. Have you seen a genetic specialist to test for ehlers danlos,as joint hypermobility can be part of this?
Also, if you are on an estrogen only contraceptive it could be making your joints worse.
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DeceitfulDove
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(Original post by keturah)
I have it too. I'm currently seeing knee, jaw and shoulder specialist. Have you seen a genetic specialist to test for ehlers danlos,as joint hypermobility can be part of this?
Also, if you are on an estrogen only contraceptive it could be making your joints worse.
Regularly? What do they do? Nope, they've just referred me to this musculoskeletal team which will take months and months. Shoulder is hurting a lot recently so if one day it gets really bad I think I'll go see a GP again to make sure I'm still on the list.

I've never spoken to another person with a hypermobile jaw, does it pop out and get stuck when you yawn?
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Friar Chris
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(Original post by DeceitfulDove)
Aite kid Stop calling me by my name heeere :unimpressed:
It used to be in your username :erm:
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DeceitfulDove
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(Original post by Friar Chris)
It used to be in your username :erm:
Exactly, why I changed it
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PandaWho
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(Original post by DeceitfulDove)
Anyone have any experiences of this? I have it and the pain is getting slowly worse. My jaw, shoulders, knees and collarbone are affected, but the ones causing pain are the right shoulder and both sides of collarbone.

The clavicle subluxation is new, they both popped out about a fortnight ago, that was a really odd sensation. Went to the doctors who told me to go to have a full joint laxity assessment the next day at physio. Went to physio and he looked at my joints and went 'no, you don't need physio, you need more specialist opinions' and am now on list to see musculoskeletal team (which according to some swimmers I know may take up to a year)

Anyone else jiggly jointed?
Iv been partially diagnosed, but not seeing anyone
My knees and shoulders give me so many problems and pain, currently my right knee is lose and im so scared its gonna pop out! Both my shoulders pop out to see me regularly and my right knee popped out big time a few years back!
Just got told pain management for me!


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keturah
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(Original post by DeceitfulDove)
Regularly? What do they do? Nope, they've just referred me to this musculoskeletal team which will take months and months. Shoulder is hurting a lot recently so if one day it gets really bad I think I'll go see a GP again to make sure I'm still on the list.

I've never spoken to another person with a hypermobile jaw, does it pop out and get stuck when you yawn?
Well I've had Mri scans and I'm waiting to see specialist physios. I need jaw surgery to put it back in place but it's only a minor procedure. My jaw locks when I sleep but yawning unlocks it haha .
The waiting times are ridiculously long. You should definitely push things as I've found the longer I've been neglected by doctors the worse I've got. I have really bad shoulder instability now.
I'm just in the process of arranging to see the top hypermobility specialist in the UK. I'd say you should try find one near you. If you want to talk then feel free to pm me
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Bern_!
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I have it too, I basically tore my whole right shoulder out of the sockets bad I might need surgery to repair it, now that the cold weather is coming in my pain gets worse. My knees., hips, hands ,ankles and my shoulders are all affected. Because i have the worst form of hypermobility I can rotate my ball and socket joints almost 360 degrees and my pain is getting worse. I have to go to pysio at least once every two weeks. I take anti-inflammatries and strong painkillers from the docs and I usually wear braces on my joints but unfortuently it never really goes away. Sorry I could nt be more help but also on a regular basis my joints dislocate and click quite violently. Also I've had a lot of steroid injection to make my joints more free flowing but it never lasts as long as it should!


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Journeyzap
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Me! Not officially diagnosed, but I have all of the signs and symptoms (high score on the Beighton score, eye-whites are light blue, extremely soft ears and nose due to lack of cartilage, arched feet, weirdly shaped ears...).
All of my joints, except my knees- crack and pop, and my shoulders subluxate often.
My fingers are by far my most flexible joints, and I can touch the back of my hand with my index finger, as well as contort my arms a great deal. My back is super flexible, but my legs much less so.
I haven't had a full dislocation happen yet, but I work hard to keep my joints strong for this reason. I do suffer pain most of the time. I think I have gotten used to it mostly, but it does get worse when the weather changes or my period comes.

I sometimes take Paracetamol or Ibuprofen when it gets really bad.
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afern
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(Original post by DeceitfulDove)
Anyone have any experiences of this? I have it and the pain is getting slowly worse. My jaw, shoulders, knees and collarbone are affected, but the ones causing pain are the right shoulder and both sides of collarbone.

The clavicle subluxation is new, they both popped out about a fortnight ago, that was a really odd sensation. Went to the doctors who told me to go to have a full joint laxity assessment the next day at physio. Went to physio and he looked at my joints and went 'no, you don't need physio, you need more specialist opinions' and am now on list to see musculoskeletal team (which according to some swimmers I know may take up to a year)

Anyone else jiggly jointed?
Seeing this title made me happy because I've never known anyone else with hypermobility! I've had it basically my whole life apart from three years when I had arthritis instead so went to the extreme opposite of not being able to move anything fully.

My worst joints have always been my left shoulder, both my hips and my right knee. My shoulder got to the point where a subluxation tore the labrum and then it literally wouldn't go back in place for three months until I had surgery on it. My hips and knee seem to have stabilised a bit in the past few months, though I still get some pain in them when they're not quite in the right position. Definitely from my experience building up muscle around the joints seems to keep everything in place a bit better.
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Sephits
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Here! Literally was just actually diagnosed on Friday and waiting to see a rheumy physio about it now with a list including my hands, hips, knees, ankles and my spine. Though also on a list for a MSK spinal physio for my back, with my spine apparently happening to be hypermobile too... so that should be a fun one. Plus shortened calf muscles which might be a nightmare given the problems with stretching.

The only advice I've really had in the meantime is pilates, but if anyone has anything else I'd be super appreciative. I'd love to actually know if there's anything else that's actually safe to do without having to a ask a PT who isn't going to touch me til I see the hospital for the rest of everything too

How do you actually tell if something's popped out? I keep having to pop my joints but I've always had to do that and couldn't really say if anything was subluxated as it's never been explained to me :/
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DeceitfulDove
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(Original post by Sephits)
Here! Literally was just actually diagnosed on Friday and waiting to see a rheumy physio about it now with a list including my hands, hips, knees, ankles and my spine. Though also on a list for a MSK spinal physio for my back, with my spine apparently happening to be hypermobile too... so that should be a fun one. Plus shortened calf muscles which might be a nightmare given the problems with stretching.

The only advice I've really had in the meantime is pilates, but if anyone has anything else I'd be super appreciative. I'd love to actually know if there's anything else that's actually safe to do without having to a ask a PT who isn't going to touch me til I see the hospital for the rest of everything too

How do you actually tell if something's popped out? I keep having to pop my joints but I've always had to do that and couldn't really say if anything was subluxated as it's never been explained to me :/
I've still not had a letter or heard a thing yet. I'm expecting to wait months well you can see and feel it. My shoulder comes out when I pick up a bag or rest my elbow on the table or if someone nudges it. It's visible but it just slides back, it doesn't stay out. This is what my collarbone subluxation is up to. Happens when I pull my shoulder back. This one doesn't slide back, it thumps, makes a bit of noise :erm: google image subluxation of whatever joints you're having trouble with

https://www.dropbox.com/s/dgc4mz74x1...rbone.mp4?dl=0
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Friar Chris
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(Original post by DeceitfulDove)
I've still not had a letter or heard a thing yet. I'm expecting to wait months well you can see and feel it. My shoulder comes out when I pick up a bag or rest my elbow on the table or if someone nudges it. It's visible but it just slides back, it doesn't stay out. This is what my collarbone subluxation is up to. Happens when I pull my shoulder back. This one doesn't slide back, it thumps, makes a bit of noise :erm: google image subluxation of whatever joints you're having trouble with

https://www.dropbox.com/s/dgc4mz74x1...rbone.mp4?dl=0
:erm: You never did clarify whether they said they were making a referral, or whether they said you had to go back to your GP to get a referral.
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DeceitfulDove
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(Original post by Friar Chris)
:erm: You never did clarify whether they said they were making a referral, or whether they said you had to go back to your GP to get a referral.
Yep, I've 100% had a referral to musculoskeletal team but it will take ages
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Friar Chris
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(Original post by DeceitfulDove)
Yep, I've 100% had a referral to musculoskeletal team but it will take ages
You might fall apart before then :nooo:
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DeceitfulDove
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(Original post by Friar Chris)
You might fall apart before then :nooo:
I know right. I think the outer sides of the collarbones are coming off now too somehow. Feels bizarre. Ah well I've lived with it 7 years a couple more months is fine :bigsmile: :yy:
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keturah
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(Original post by Sephits)
Here! Literally was just actually diagnosed on Friday and waiting to see a rheumy physio about it now with a list including my hands, hips, knees, ankles and my spine. Though also on a list for a MSK spinal physio for my back, with my spine apparently happening to be hypermobile too... so that should be a fun one. Plus shortened calf muscles which might be a nightmare given the problems with stretching.

The only advice I've really had in the meantime is pilates, but if anyone has anything else I'd be super appreciative. I'd love to actually know if there's anything else that's actually safe to do without having to a ask a PT who isn't going to touch me til I see the hospital for the rest of everything too

How do you actually tell if something's popped out? I keep having to pop my joints but I've always had to do that and couldn't really say if anything was subluxated as it's never been explained to me :/
First make sure you're not on a progesterone only form of birth control as it relaxes ligaments more which can make your joints more instable. There's something called prolotherapy that can help tighten up ligaments around certain joints, it can also be injected into the spine. You may be able to get it on the nhs but be prepared to battle for it.
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sliceofcake
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Hello!
I hope you don't find me a fraud - I don't have hypermobility syndrome, but I'm very curious about it. I'm seeing a physiotherapist for some shoulder issues and when I had the initial meeting he just wanted to check out my other joints and whatnot, and he said I'm "definitely hypermobile". I didn't really know anything about it, he said there's a scale of severity and it's about "9 or 11, I can't remember which" that means you have the syndrome. He didn't tell me what number he thought I was, or if I'll be finding out at any point. I thought it was normal to be able to move my limbs and hands etc as much as I can. He said I have it a bit in the knees, but quite a bit in the arms and hands.
So, now I'm just curious (and as a paranoid person, a little worried!) What is it like to live with? Can it be painful? Are the slips painful? I've read all of your posts and I don't remember anyone saying it's painful, just uncomfortable. Is there anything I can do or avoid to prevent myself becoming worse, do you know?
I'm seeing my doctor for a slightly irrelevant purpose tomorrow, I hope to ask her a few questions about it too.
Thanks!
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