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Thread: Diagnosed with SE Lupus this week - Not quite sure how to feel.

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  1. #1
    Join Date
    Apr 2013
    Thanked 2 Times in 2 Posts

    Cool Diagnosed with SE Lupus this week - Not quite sure how to feel.


    Firstly I would like to say a big THANK YOU to all who have posted their stories on here. Reading through them gives me hope, understanding and a feeling of not being alone with this diagnosis.

    In a weird way, I feel relieved to now know what is happening to my body. As so many of you have expressed before, it is such a hard path due to 'looking normal' (had that comment repeatedly the last 12 weeks of flare up) but feeling so awful and knowing in myself that something is quite wrong.

    A lot of pieces of puzzle have fallen into place, in hindsight, with my health issues over the last 5 years. Fatigue, stress-induced illnesses & frequent susceptibility to infection, extreme sunlight reactions (especially since moving to live in the Caribbean 3 years ago) all now make a lot more sense. I always wondered why I got, what I called my, "fatigue crashes" after sun exposure at work and now I know there is actually a reason behind them - it's not just me going mad!

    A misdiagnosis of reactive arthritis, after a gastro infection in 2010, now looks as if it was my 1st full lupus flare.

    I have been lucky enough that my GP is the head of the Lupus support group here, and spotted my symptoms quickly enough to refer me straight to the University Rheumatologist. It has taken 12 weeks of crazy symptoms, but we now can treat them accordingly and I am on 60mg of Prednisone, reducing 5mg a week until I can be placed on Plaquenil. My ANA did come back negative, but the Rheumatologist said that he is without doubt this is the correct Lupus diagnosis, based on my history. My mother also has MS.

    My symptoms have been as follows:

    E.coli urine infection from initial stomach infection
    Strep D infection
    Painfully itchy scalp with little bumps
    Severe joint pain in hands, feet, knees, elbows and shoulder
    Severe fatigue (12 weeks so far and still hard to cope with)
    Photosensitivity on chest, arms, neck and face (blood vessels burst in direct sunlight)
    Temperature and feeling hot constantly
    Painful mottled red palms and soles which go red in the creases and mark easily when in contact with objects.
    Cold feet
    Severe Headaches from sunlight exposure
    Hair breakage and loss (getting worse)
    Glands up and down/ dry throat
    Shortness of breath during light walking
    Dry red eyes (worse when very fatigued)
    Muscular pain in calves and back of thighs
    Weight change
    My memory is awful - (I always thought that was weird compared to everyone else!)
    Thirsty all the time

    So... any advice on coping and living with Lupus would be warmly received. If you have experienced similar symptoms as above, I would love to hear how you have dealt with them. There is a support group where I live so I will be contacting them this week too. My main concern is getting out of this flare and then figuring out a way to return to work (not easy as I work on boats in direct sunlight!!!)

    Sending you all positive thoughts
    Last edited by Polly; 05-01-2013 at 03:32 PM.

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