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Thread: Newbie and lost in the world

  1. #1

    Newbie and lost in the world

    Hiya,

    My name is actually Karima (just to be confusing) and I'm 23.

    I have a few illnesses: ME/CFS, Fibromyalgia, Joint Hypermobility Syndrome, Ostiopenia and all the sub problems that come with them. I use a wheelchair when out of the house and have needed to use it indoors on occasions.

    I could write a story but Ill keep this short. In a few words, I'm sick and tired of being sick and tired. I don't know any other disabled people and I just feel lost.

  2. #2
    Senior Member
    Join Date
    Dec 2013
    Posts
    3,512
    I can relate to your story, Karima, because I've been there.


    I fell ill aged 18 with what, at the time, appeared to be ME though later revealed itself to be a neuromuscular condition.

    Along the way, I met a rheumatologist who said I met all the criteria for fibromyalgia but decided not to enter the diagnosis formally on my medical records because she felt my underlying condition was neurological and she did not want a fibro diagnosis to provide an excuse for not fully investigating the neurological aspects of my condition.

    Amongst my symptoms is osteopaenia which, fortunately, has not progressed to full-blown osteoporosis.


    I've been a wheelchair user since early in my illness and am now a powerchair user.



    It is difficult figuring out what to do for the best and how to make the best of your life. It certainly helps to know that you are not alone - there are several support groups for people with ME and others for people with Fibro. This is a place where there are people with all manner of medical conditions and disabilities.

    The specialism of these forums is benefits, though they certainly have a general element to them.

  3. #3
    Senior Member
    Join Date
    Mar 2014
    Location
    Shropshire
    Posts
    1,484
    You don't say where you live. Perhaps if we knew, we could point you to social groups?

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