I don't know what to do next???

I have been poorly for a few months now. My symptoms are mainly terrible, draining fatigue, that leaves me feeling so ill that I can't even talk and pain in my joints and general pain all over that varies from day to day. Some days I can't get out of bed because of the pain and

my fingers swell up on a regular basis. It is definately getting gradually worse.

My G.P has been amazing and sent me for blood tests quickly. My ANA is positive, but the rheumatologist says I don't have enough factors to proceed with " a Lupus label".

What has to happen next? What is he waiting for?

I am so ill and feel that my body can't possibly carry on like this. I am having to use a wheelchair now to be able to leave the house and rely on my partner to push me around. I've forgotten what it is like to have a "normal" day.

Thanks for any advice xx

4 Replies

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  • Sorry to hear you are having such a bad time. Your symptoms sound so similar to mine. I have a diagnosis of SLE & fibromyalgia. Have you had any rashes? If you have take a photo to show them. My son is like you, waiting for a diagnosis. The rheumy asked if he has had any rashes. (He hasn't.) He too has a positive ANA, extreme fatigue, joint pains...hands in particular.. chest pains and nose bleeds...had an ECG...MRI scan and nothing shows. You can always asked to be referred to another rheumy for another opinion. Your GP sounds very good! Have they tested your Vit D levels - I mention this as my son's level is the lowest they have ever seen. The rheumy mentioned yesterday that this alone can give joint pains and fatigue. I hope you get a diagnosis soon and feel better. Take Care x

  • Hello Purple-Lou

    first, are they giving you anything at all for the pain and inflammation? (this seems to be the most important immediate concern)

    second, has the rheumatologist made any kind of diagnosis at all?

    I agree with Loopy-Lou that maybe you need to see someone else - but I also remember that I was ill for a couple of years before getting a 'correct' diagnosis (I was told Rheumatoid, MCTD, and the very general term 'inflammatory arthritis' was used a lot). In my case - what happened next was that I had a really bad flare and got terribly anaemic, and then saw a new rheumatologist who had just started in the post. She was quite firm about the diagnosis of lupus and didn't let me get away with refusing to take the drugs (I didn't want to believe I had something so dire).

    Looking on the bright side - it may not be lupus after all (and no one could wish to have this - much as you would like a diagnosis). The tricky thing is that you need to know what is wrong with you now, and of course it could be that your rheumatologist just doesn't know.

    Hang in there, and try not to stress about it too much - that in itself could make you worse. Sounds as though your partner is a good support - perhaps he needs to come with you to appointments to talk to the docs?

    I'm sorry I can't be more helpful.

  • hello purple-lou,

    Im so sorry loopy-lou may well right you might need to someone else but dagnosis can take ages I didnt know what was wrong for long time and as I looked ok people couldnt think why I

    said I felt ill in the end diagnosis was a shock but better not knowing its not something I would wont because Iam diffirant healthwise every day the pain can be unbearable at time. but hang on there and try to keep calm your partner supports you well take him to appointments someone from my household comes with me it takes the stress out of it. good luck judith.

  • Thanks for all of your feed back. Going to see the Rheumatologist on Tuesday, so hopefully I will have some answers....xx

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