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Hypermobile Ehlers Danlos Syndrome.

Posted , 4 users are following.

laurahairqueen
laurahairqueen

Hey everyone. newly diagnosed, feeling rather confused if im honest. Consultant basically told me hEDS & fibro, didn't go into much detail, gave me a rubbish leaflet, but didn't adjust any of my current meds etc. im in agony 99% of time, dont sleep much but feel constantly drained, all my joints feel broken and everytime i move ive got shooting pains and cracking/grinding, constant back ache this has been on going for such a long time, im soooo down and cry at drop of a hat. im a 27 year old mum and when im not at work i am resting because the pain. feeling so alone and as though nobody understands .. PLEASE HELP!!!!!! any information would be amazing!

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1 Reply

  • AlexandriaGizmo
    AlexandriaGizmo laurahairqueen

    Posted

    Hi I'm sorry but I know about Edd's but I don't have it so my knowledge is only learned and I also have a friend who also has been diagnosed with it through a mass of tests, she is just waiting to get her appointment through for a consultation with a Ed's expert in London.

    Have you done any research online, their are a couple of good websites that are full of good information. Have you had all the tests to be sure it is Ed's, one of the major problems with this disease is that your joints are prone to dislocation, what medication have the put you on

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