Hypermobile Syndrome Support Group

Hypermobile syndrome is characterized by the ability to move a joint beyond normal range. People with hypermobility syndrome may develop other conditions caused by their lax connective tissues. These conditions include Gastroesophageal Reflux Disease (GERD), Irritable Bowel Syndrome (IBS), varicose veins, flat feet, scoliosis, sprains, tendonitis, and bursitis.

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  • sandiz

    where are you from,how old when diagnosed

    0
    Hello, I am 50 yrs old and just diagnosed in May. I have suffered for years with IBS, spraining and then breaking my ankle, headaches, joint pains, hips trying to dislocate( I was born with dislocated hips) low blood pressure, miscarriages,balance is off, rotator cuff problems, freezing not taking at dentist,etc. Doctor has done many tests for lupus, arthritis, celiac disease and everything came...
  • cindymulkey

    Recently diagnosed

    2
    I was diagnosed in April with BJHS and autonomic dysreflexia along with shoulder impingement and tendonitis. I have worked with pain and symptoms for 28 yrs. Since Jan. I have been off work. My rheumatologist prescribed neurontin and keppra which make me feel drunk. I'm dealing with alot of pain and limited mobility in my arms, neck and hips. Im trying stretches and have been in my pool to...
  • CrackinCrazy

    New

    2
    Ok So first time on here,To be honest feeling really lonely at the moment i dont have a supportive family and i live on my own I turn 30 in a few days. I have nothing really to show for myself . Ive been pedalling along like its all in my head for so so long and the doc told me i have hypermobility last week. and to be honest it is feeling a bit more like a death sentance theres no help as it is...
  • des10ed2b

    anyone else with GI problems?

    hello all! i am living with hypermobility syndrome like the rest of you and have the normal things that come with it. dislocations, more stretchy skin than normal, mitral valve prolapse, organ prolapse, etc. however, i have been having GI issues for years and they are getting worse. i have had numerous lower GI scopes and 1 upper GI scope and it looks like i will be having some again before too...
  • emma.hanson

    16 year old with hypermobility

    2
    i'm new to this so i thought i would share my story with everyone. My name is Emma and when i was about 5 to 6 years old i was diagnosed with irritable bowel syndrome or IBS. Certain foods would trigger it and storms also triggered it. About 1 year ago my Hypermobility pain started getting very bad. I was constantly at the doctor trying to figure out what was wrong with me, lots of scans and...
  • rgriffin

    2yr old with HMS; please help!

    2
    I am writing this in desperation that someone out there knows what we are going through. My son was finally diagnosed with HMS after over a year of doctors telling us his incredible pain was behavioral or teething related. Finally an answer, and we thought things would get better. We are having a terrible time getting his pain under control. We started with naproxen once daily, it seemed to...
  • deleted_user

    newly diagnosed

    5
    Hello, I have just been diagnosed this week with EDS hypermobility syndrome and fibromyalgia. I don't really know what to do to help the pain I'm getting with this. I was on cocodemol and tramadol but it seems to have made me ill and I can't concentrate. I have now got lydocaine patches. They seem to work ok for my back but they come off and I can only wear three at once and its only in a...
  • deleted_user

    Strengthening Exercises

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    Do any of you have a link to a good website that has a diagram and how to for strengthening exercises you have tried for your hyper-mobility?
  • pinkpony66

    EDS?

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    Is there a difference between EDS and HMS?
  • deleted_user

    Help - Please.

    1
    Hello all. This might be a tad long. Please forgive me, I've been looking for a support group where people will understand for a LONG time. I have a lot of questions so I'm sorry if I overwhelm anyone! And thank you! When I was 14 I was taken to see an orthopedic doctor because I grossed my brother out by popping my hips in and out of joint, as well as my knees. He really thought there was...
  • cottontail

    problems with hands and feet

    4
    Hi, there i have not long been diagnosed with hypermobility syndrome. Can anyone advise if they have tried anything that can help pain in hands and feet. I am worried about having to give up my job due to pain in my hands and wrists. would splints help ?also my feet hurt and consultant told me to get insoles which i have but they seem worse .also is this terrible tiredness part of the illness?...
  • deleted_user

    HMS Speech Problems/ HELP ME!

    9
    Has anyone else experienced speech problems? I was recently diagnosed with HMS and have noticed my speech problems getting worse. I was once extremely eloquent but now i find my tongue heavy and difficult to move. I also experience fatigue in my vocal cords if i speak for more than a minute or two. Can some one please please help me????
  • deleted_user

    Confused

    3
    People who have HMS complain of intense, severe pain constantly but I don't have that. All my joints bend further than normal, they're weaker and stretchier which is a huge symptom of HMS. It causes me loads of other health problems including muscle fatigue, aching, clicking and sometimes pain but not chronic, severe pain. Does this mean I don't have HMS or is it just a mild form?
  • deleted_user

    HELP ME!!!!

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    Has anyone else experienced speech problems? I was recently diagnosed with HMS and have noticed my speech problems getting worse. I was once extremely eloquent but now i find my tongue heavy and difficult to move. I also experience fatigue in my vocal cords if i speak for more than a minute or two. Can some one please please help me????
  • deleted_user

    Hypermobility support and information

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    I was diagnosed last year with hypermobility and recently in hospital doctors suggested I had EDS hypermobility type. I have found support very bad and have had a bad time with doctors and physio. I am working to raise awareness for this and am keen to hear other stories of people struggling with diagnosis or information. I have a blog on hypermobility and EDS...