Bad News....

Discussion in 'Fibromyalgia Main Forum' started by Claire_Jones21, Apr 20, 2007.

  1. Claire_Jones21

    Claire_Jones21 New Member

    Hi Guys

    I have had some bad news today. All my test results for lupus and auto immune diseses all came back clear. Don't think I had an ANA though.

    Is there anyone else waiting for a diagnosis and your resuts have some back clear?

    I have been suffering for six years.

    Any comments would be much appreciated.

    Claire (UK - Wales).
  2. leubie

    leubie New Member

    im sorry you are suffering so badly--------i know how horrible it is to be sick and not know why-----have you been dx w/ fibro or cfs?----------please feel better and i hope you can figure out what is wrong w/ you--------------ill read your profile and see what you wrote in there(if anything) ------------take care-------love to all--------laura
  3. glenda2

    glenda2 New Member

    hi claire

    i know how you feel. you are glad you don't have (whatever they are testing for) but you still feel very sick and you do not know why. i have fm i am going to be tested again for ms. i have been tested for so many things and all are ok. alot of people do not know or understand fm so they think you are crazy. if you had a well know disease people wuold understand more. it isn't the fact taht you really want something else it is just that you need the understanding. some people do not understand at all.
    wishing you well
    glenda
  4. Claire_Jones21

    Claire_Jones21 New Member

    Thanks for all your responses much appreciated.

    Noenergy1, the reason why it is bad news is because I have been in terrible pain for 6 yrs, my face swells under any stress, pressure or any upset. I can't handle the sun for more than 10 mins. Hands swell feet are always freezing. Blisters in nose and mouth, extreme fatigue. The list is endless, it is bad news beacuse something is wrong with me but nothing is showing up. My consulatnat and GP believe I ahve lupus, I believe I have lupus. I am just waiting for the penny to drop. So it is bad news because I want something confirmed, in writing and on the correct medication (my consultant will not put me on lupus meds until it shows up, I am living on painkillers).

    I have spoken to alot of people who's diagnosis hasn't some through for years and I believe I am one of them. It is frustrating as some/or most of you know.

    I would like to go into work and say 'look I have lupus, I am not taking the piss, I am diagnosed ill'. At the moment I am a hyperchondriac (how ever you spell it), that just doesn't like work. I love work the social life and interaction with other people, when I am ill I am confined to my room and for a week I might not have a proper conversation with someone. I mates are at work, but nobosy understands.

    I have all the symptons of lupus (except the rash) and feel sometimes my life is over.

    I just want people to understand, I have only been signed up to this website for a few days and benefited from peoples comments and thoughts. But most of all their support.

    Thanks again for your support.

    Claire (Wales - UK).

  5. harmony21

    harmony21 New Member

    Hi Claire am so sorry to hear you feel so desperate and think i know what you mean. I too have been ill for long time and have all the tests done for a variety of diseases and they come back CLEAR, good yest but also not cause you cant do anyting about how you feel and doctors tend to think you are sick in the head, even employers in my case. But then 12 months ago was diagnosed with Fibromyalgia and now trying to come to terms with its limitations and management. Dont give up keep proactive and remember with Fibromyalgia its a minimum of five years before many of the diagnosis are confirmed and that its very complex and different for all
    love, hugs and healing light
  6. annaleeb

    annaleeb New Member

    I think I understand why you said bad news, correct me if I am wrong........... while it is wonderful to have the tests come back clear, what bothers you is that you still have NO answer to why you suffer with pain etc. ?
    Because for me, I was finally glad actually to have an answer to why I had what I had. does this make sence.?
    I hope you find the answers you are looking for.