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I don't know what is wrong with me but I know there is something. I have ibs, joint pain , skin complains and skin sensitivity, brain fog most of the time. And most of all I feel like I have never slept in my life. When I do get proper sleep it's like I'm weighted down in bed and can not move.

ME has been mentioned by doctors I also have lupus in my family.

I get sick of putting up with pain and been so tired , I don't tell any one any more because there is nothing to see and doctors can not find anything with with me.

Feeling totally fed up

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  • to andreajm1:

    "brain fog most of the time. And most of all I feel like I have never slept in my life. When I do get proper sleep it's like I'm weighted down in bed and can not move. (and joint pain)."

    jus wanted to say i feel for u and i have M.E...

    yes, it is rough.

  • Hi Andrea

    Welcome to the forum, hope you enjoy being here and find it helpful.

    Sorry to read of your diagnosis struggles. Your symptoms could well be suggestive of an immune illness problem, specially as lupus is in your family!. The fatigue can be very debilitating like ME and a lot of people are diagnosed with it first and then later can be told it's a different illness like lupus when things start showing in blood.

    Have you had bloods done at GP because if you get a positive ANA you must be referred to a Rheumatologist. ? This test indicates there's something wrong with immune system without being specific for lupus. Further bloods are needed hence the referral!.

    I do hope you get some progress soon. Keep us posted. X

  • To andreajm1

    I feel the same and experience often ..i was diagnosed having lupus condition 3 years ago.. there's a time i feel ok..but most of the time i dont feel well 😔 i pray they can find a cure very soon .. 🙏🙏🙏

    Just want to let you know you are not alone..

    Don't let lupus ruin your life..

    #staypositiveinlife💐

  • Hi Andreajm1,

    Welcome to the LUPUS UK community forum. I'm sorry to hear that you are having trouble getting a confirmed diagnosis. Are you currently just being seen by your GP, or have you been referred to a rheumatologist? Do you know if you have had any blood tests for lupus done?

    We have a couple of blog articles that may be of interest to you. One is about managing fatigue and another is about pain management;

    lupusuk.org.uk/managing-fat...

    lupusuk.org.uk/pain-managem...

    If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

  • Thank you everyone for your reply's. No I have not had blood tests done as doctor only seems to treat on symptom at once. I have booked an appointment for a week on Friday and have written everything down to take with me.

    I know it sounds strange but sometimes it's like people don't believe you because they can not see it or find a cause. Will keep you updated.

  • It's very important to get blood tests done. It's just not acceptable to 'treat by symptoms' and just guess, as your GP is doing. So you need bloods and an appropriate referral to a specialist.

    I was feeling unwell for years but it was only when I got bloods done that I found out I had Lupus. Then I got a referral and meds, and feel - not 100% - but a lot better. The longer it gets left the worse it can be. Tell that to your GP.

  • I had blood tests done last Friday and now waiting for results.

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