Turn on thread page Beta

Hypermobility syndrome- anyone else? watch

    • Thread Starter
    Offline

    14
    ReputationRep:
    Hello!

    I have Hypermobility Syndrome. I'm not talking about being "just double-jointed" or "bendy". That's not all there is to this syndrome (and why I find it such a poorly named condition- most hypermobile people don't have the syndrome and are perfectly healthy!). The syndrome causes easily dislocating/partially dislocating joints, skin problems, widespread joint pain, fatigue, muscular aches, digestive system problems, cardiac issues... Being "bendy" is just a bit of it!

    I was given an emergency appointment today as my left shoulder just won't stop partially dislocating. It even does it when I sneeze! It did it six times this morning and was seriously hurting! I'm newly registered with my uni GP, and I have to say I was impressed. I'm seeing a new physio and she was straight to the point about everything, and was honest about the fact that I may well need multiple ops in the future. She unhinged my shoulder as easily as you can open a door, and was honest about everything. My old GP just made Tommy Cooper jokes when I went to see him six weeks ago, and my old physio was just plain useless (he hasn't given me any exercises and has admitted he doesn't know much about the hypermobility syndromes!).

    Anyone else on TSR have this condition?
    Offline

    11
    ReputationRep:
    Me. Had it diagnosed when I was 7. And as i grew I've been finding that more symptoms/problems seem to appear
    • Thread Starter
    Offline

    14
    ReputationRep:
    Sorry to hear that! Do you do physio or anything? Yeah, mine has definitely got worse in this last year or so. My shoulder I swear is out more than it is in. I had it in a sling earlier in a meeting, sneezed and it almost completely dislocated. Thankfully I put it back in okay, but the cracking sound made everyone sick. I've been back 90 minutes and it partially dislocated again. I had coughed. Well tomorrow's lab session will be fun...

    I feel like this is a poorly understood condition. It really winds me up when people say "Oh does that mean you have bendy elbows/knees/ I have hypermobile joints too..." so now I just say "I have a condition that makes my joints unstable and prone to dislocations." Then if they want to ask more questions, they can. I'm off to Malaysia in three weeks for a field trip and have had to have my own health and safety meetings, have had to have my own risk assessment form written, can't do some of the things on the itinery... so much for being "just bendy"!

    But I can laugh it off- I laugh most of the time when my shoulder falls out after sneezing/coughing/hiccuping/whatever.
    Offline

    18
    ReputationRep:
    I have Ehlers-Danlos syndrome hypermobility type, dunno really what the difference is tbh. But yeah. :hi:
    • Thread Starter
    Offline

    14
    ReputationRep:
    (Original post by Pathway)
    I have Ehlers-Danlos syndrome hypermobility type, dunno really what the difference is tbh. But yeah. :hi:
    Hello! Ah yes, there's such an overlap between the two syndromes, they're practically identical from what I can gather. Don't they now think they could be the same?
    Offline

    17
    ReputationRep:
    (Original post by ChemicalBond)
    Sorry to hear that! Do you do physio or anything? Yeah, mine has definitely got worse in this last year or so. My shoulder I swear is out more than it is in. I had it in a sling earlier in a meeting, sneezed and it almost completely dislocated. Thankfully I put it back in okay, but the cracking sound made everyone sick. I've been back 90 minutes and it partially dislocated again. I had coughed. Well tomorrow's lab session will be fun...

    I feel like this is a poorly understood condition. It really winds me up when people say "Oh does that mean you have bendy elbows/knees/ I have hypermobile joints too..." so now I just say "I have a condition that makes my joints unstable and prone to dislocations." Then if they want to ask more questions, they can. I'm off to Malaysia in three weeks for a field trip and have had to have my own health and safety meetings, have had to have my own risk assessment form written, can't do some of the things on the itinery... so much for being "just bendy"!

    But I can laugh it off- I laugh most of the time when my shoulder falls out after sneezing/coughing/hiccuping/whatever.
    I have Hypermobility and having to have an occupational health assessment for work due to it!

    I too have also noticed its gotten much worse as iv gotten older!


    Posted from TSR Mobile
    Offline

    1
    ReputationRep:
    (Original post by ChemicalBond)
    Hello! Ah yes, there's such an overlap between the two syndromes, they're practically identical from what I can gather. Don't they now think they could be the same?
    They do have very similar symptoms, however many doctors are not aware of Ehlers-Danlos and it does often go misdiagnosed for other conditions.
    • Thread Starter
    Offline

    14
    ReputationRep:
    (Original post by PandaWho)
    I have Hypermobility and having to have an occupational health assessment for work due to it!

    I too have also noticed its gotten much worse as iv gotten older!


    Posted from TSR Mobile
    I'm sorry to hear that! Good luck with your OH assessment!

    (Original post by JDobson1995)
    They do have very similar symptoms, however many doctors are not aware of Ehlers-Danlos and it does often go misdiagnosed for other conditions.
    That's so true. My mother has been a nurse for over 30 years, including orthopedics, and she had never heard of EDS until I was talking to her about a Facebook support group for people with EDS-III and HMS.

    My shoulder popped out in the middle of a lecture today! I went to the bathroom to put it back in, threw a sling on it and got on with the lecture. I then did my lab exam with just one arm (the exam went well!). People are always like "how are you so calm when your joints come out!? I'd be screaming if that was me!" It's now not even half 9, my leg muscles really hurt and I'm seriously considering going to bed soon.
 
 
 
Reply
Submit reply
Turn on thread page Beta
TSR Support Team

We have a brilliant team of more than 60 Support Team members looking after discussions on The Student Room, helping to make it a fun, safe and useful place to hang out.

Updated: February 26, 2016
The home of Results and Clearing

1,017

people online now

1,567,000

students helped last year
Poll
A-level students - how do you feel about your results?

The Student Room, Get Revising and Marked by Teachers are trading names of The Student Room Group Ltd.

Register Number: 04666380 (England and Wales), VAT No. 806 8067 22 Registered Office: International House, Queens Road, Brighton, BN1 3XE

Write a reply...
Reply
Hide
Reputation gems: You get these gems as you gain rep from other members for making good contributions and giving helpful advice.