Joint Hypermobility Syndrome, anyone?

mumof2boys1990
mumof2boys1990 Member Posts: 6
edited 4. Jan 2012, 21:28 in Living with Arthritis archive
Does anyone have this? ive just been diagnosed with it and was wondering if anyone else here has it? does it cause u many problems? I am in agony alot of the time :( there may be other problems here tho like arthritis but have to go for some scans xrays and blood tests to find out. thanks x

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I think there are a few on here with that but whether they will see your question is another thing. If you do a search on that term on this forum you should be able to bring up all the threads that mention it. It's amazing what people like you can do with your joints - if not a little scary! :smile: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 30,026
    edited 30. Nov -1, 00:00
    Hi Mumof2bs

    I know of at least two people on here who have it but they have obviously not been on yet today.

    Very wise to have your tests and scans then at least you will know what is what.

    If it does turn out to be arthritis - whatever type you will find support from us lot on here.

    Love

    Toni xx
  • spacey
    spacey Member Posts: 126
    edited 30. Nov -1, 00:00
    Hi I too have hypermobility joint syndrome and also enthesitis. I also get a lot of pain in my joints worst being my back and elbows, wrsits, fingers and feet. I was refered to a musculoskeletal physio practicioner at my hospital who is helping me to strengthen the muscles in order to protect the joints. It is a slow process and i have been going for 18 months with no end in sight yet! i take daily anti inflamatories to help both this and my arthritis although it is currently being reviewed as it not as effective as it once was. I also see podiatry as my bendy ankes are aggrevating my sore toe joints. I was given my diagnosis straight away although i did have x rays, mri and blood tests too which are repeated every so often. There is a helpful website but dont know if i can name it on here, I googled it and found them.
  • hideandseek
    hideandseek Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi all. I have joint hypermobility and am part of quite a large online support network so if need any support or advice please do ask.

    I write a blog called 'hideandseek invisible disabilities which is about conditions like joint hypermobility syndrome. The link to the blog is www.hideandseekdisabilities.blogspot.com also we are on twitter follow us at @HideAndSeekID

    A really useful website is the www.hypermobility.org site.

    Hope this helps, mery Christmas to all, x
  • PamieAFC1903
    PamieAFC1903 Member Posts: 899
    edited 30. Nov -1, 00:00
    I had a bad experience with the hypermobility charity, but I wont go into that....

    I seem to have managed with it on my own, I now get monthly checks with my GP due to the amount of travelling & walking I do, its just to see if the pain is better or worse.

    If you can get a good doctor on your side you are laughing, however, I have had problems with my HMS, due to the fact with it being unseen, I cannot get DLA or any other real help with funding from College. I have had to buy a lot of things because rheumatology here will not see me and put me forward for help and my GP says they cannot really help on that part as it would be up to rheumatologist... I have to pay myself to get a second banister put at our stairs....

    I am actually fearing that my young cousin has it as she is experiencing pain in her knees, but no doubt as she is still (rapidly) growing the doctor will put it down to growing pains.
    I ♥ Runrig.

    I live, sleep, eat and breathe Runrig!!!!!.
  • cutieclaire
    cutieclaire Member Posts: 134
    edited 30. Nov -1, 00:00
    Hello, nice to hear from you.

    Yes I have Hypermobility and Rummy, which I think has made it worse at times.

    I have now got used to not over extending and bending knees and back rather than piviting from them.

    Hope it gets better just be kind to yourself and gently does it.

    Hope this helps.

    Happy Christmas

    Claire
    xx x:-?
  • cutieclaire
    cutieclaire Member Posts: 134
    edited 30. Nov -1, 00:00
    Hello, nice to hear from you.

    Yes I have Hypermobility and Rummy, which I think has made it worse at times.

    I have now got used to not over extending and bending knees and back rather than piviting from them.

    Hope it gets better just be kind to yourself and gently does it.

    Hope this helps.

    Happy Christmas

    Claire
    xx x:-?
  • penfactor
    penfactor Member Posts: 366
    edited 30. Nov -1, 00:00
    Hello there!
    I also have HMS/Erlers-Danlos syndrome & developed early-onset osteo-arthritis as a result. I originally was diagnosed by a physiotherapist but was not made aware of the contra-indications until much later.
    DD is right - there are a few of us here on this site forum too & I started a thread a little while back which I've recently updated.
    I am sorry I cannot visit this lovely forum as much as I would like but I am bumping your post up & hoping you find the other thread to contact other "bendies"!
    Pennie X

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