New and confused!

Hello everyone,

I was told i had Discoid Lupus about 7yrs+ ago! Cant remember exactly!

I have the main symptom of Discoid rash, which is made worse in the sun! Obviously! lolx And fatiuge! Oh god it drives my mad! But lately i have starting to get sore swollen ankles, when i am at work, as we dont sit down.Plus i started getting a pain in my foot, in the toe joint. I am off work sick at mo, as i had a flare on my skin, and my mood dropped quite fast. So i knew to take a break!

I am confused though........i went to Dermy. they have referred me to Rhumi, gave me a course of steroids, ( which have worked) and took bloods. They keep telling me it is only effecting my skin, and it doesn't spread???? To cap it off, my bloods came back as Normal!!! So now i am questioning, do i have it! Am i just imagining all this?? When i read how other people suffer so badly, i actually feel guilty, cause i aint that poorly! Totally confused!!! And Soooo frustrated!!!xxxxx

4 Replies

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  • Hi know how you feel.

    Saw my consultant today and he seemed really concerned as i saw him privately. Usually he is very dismissive at the NHS hospital. Anyway 10 blood bottles and cultures later return next week to see him for results. I am off work sick at the mo. I have all the symptoms that you can think of and he says he is 90% sure that its SLE but will not label me but told me to up my steroids. This has been going on for 3 years although i have had symptoms for 25 years.

    This does get you down and doesn't help as as you sAID YOU BECOME LOW when you are not feeling good so dont need any other confusions.

    As you can see my mind is not working and my sentencing is awful. I'm sure it effects the brain in many ways or I'm just going mad??

    Don't feel guilty everyone suffers differently and its the not knowing what is happening to you is worse then knowing what you are dealing with.

    I hope your Rhumi gets to the bottom of it. Keep on at them if your symptoms don't go away. Some people are not diagnosed for absolutely years!

    Hope you get it sorted, chin up and all that.

    Kind regards x

  • Welcome, I am not in a great position to offer advice as I am newly diagnosed but keep on at your Drs and they will help..

    Good luck x

  • Your story sounds so similar to mine. I was diagnosed with discoid lupus in early 1990s.

    I have only just been told I have other lupus symptoms this year - it has taken a long time!!!!!

    As you said,I feel silly as I don't have problems with my major organs and feel guilty about moaning. But the problems are real - you know your body,just listen to it and I suggest writing down all your symptoms.I also wrote a timeline and realised where all my problems started from.

    Good luck xx

  • hiya i have dle and have been getting swollen ankles and wrists i have been told its hypermobility??? having a very bad flare at the min why do i get soooo down so many questions who can answer them?????

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