Joint Hypermobility Syndrome Watch

keturah
Badges: 8
Rep:
?
#21
Report 4 years ago
#21
(Original post by sliceofcake)
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!
Pain wise it varies. For me I'm In a constant low level of pain that sometimes gets to a high level, I do have other health issues, I've had spinal surgery. My friend has it very bad she literally couldn't walk as her hip would dislocate and the discs in her spine wore out.
However, for me the worst thing that is the fatigue. I'm seeing a specialist next week so if you want me to ask him any questions on your behalf feel free to say
Hyper mobile joints sometimes go misdiagnosed for years, I want to raise awareness of the condition, hopefully get better treatment for people.
0
reply
sliceofcake
Badges: 15
Rep:
?
#22
Report 4 years ago
#22
(Original post by keturah)
Pain wise it varies. For me I'm In a constant low level of pain that sometimes gets to a high level, I do have other health issues, I've had spinal surgery. My friend has it very bad she literally couldn't walk as her hip would dislocate and the discs in her spine wore out.
However, for me the worst thing that is the fatigue. I'm seeing a specialist next week so if you want me to ask him any questions on your behalf feel free to say
Hyper mobile joints sometimes go misdiagnosed for years, I want to raise awareness of the condition, hopefully get better treatment for people.
That's very kind of you I spoke to my doctor about it this morning and she said as it's not severe it's not really a concern. I suppose I'm thinking more long term, I know my grandma has arthritis and my brother has joint issues so it's obviously something in the family!
0
reply
kokabel
Badges: 0
Rep:
?
#23
Report 4 years ago
#23
I've been diagnosed with it since I was about thirteen, ended up in GOSH for two weeks for intensive physio (and probably also EDS, but that's another thing entirely). My hip still sometimes comes out and it's a great way to introduce it to people. Your best chance is probably with physio tbh. Your one seems ~inexperienced~ or whatever, but if you're pretty high on the Beighton Scale then it's physiotherapy you'll need.
0
reply
X

Quick Reply

Attached files
Write a reply...
Reply
new posts
Latest
My Feed

See more of what you like on
The Student Room

You can personalise what you see on TSR. Tell us a little about yourself to get started.

Personalise

Have you registered to vote?

Yes! (82)
39.23%
No - but I will (9)
4.31%
No - I don't want to (13)
6.22%
No - I can't vote (<18, not in UK, etc) (105)
50.24%

Watched Threads

View All