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Thread: How did your symptoms begin?

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  1. #24
    Join Date
    Apr 2010
    Mackay, Australia
    Thanked 108 Times in 68 Posts


    Mine started young as well.
    I can remember being in tears from joint pain and the doctor always just said "growing pains". They always generally happened at night or in the morning or whenever it was gold.
    I had an unusual amount of 'lung infections' for no apparent reason. I had trouble concentrating and hearing, the doctor just said I needed to pay more attention in class and it was all in my head. I was always dizzy but the fatigue came on gradually and more so in my 20s. I was very sun sensitive and one day they made me do the cross country... I came back covered in a rash, literally just like the molar rash on your face but it wasnt just on my face, it was all over my chest and back as well. Just from being in the sun for so long. My mum didn't even take me to the doctor. My mother was never a good mother at all, she was rather neglectful and when I finally seriously came to her one day and said I had a problem... she LAUGHED IN MY FACE and said "Oh woe is you, you poor hard done by thing, life is terrible when you are a kid and dont have to pay any bills, you poor thing." I will never forget that. I think I might give her the same attitude when she is old and can no longer support herself and needs me to help her out.
    I was thought to have developed asthma because I had sore lungs a lot.

    In my early 20s it started getting worse... the doctor ran all kinds of tests which included urine and blood tests that came back with high esr and my urine had protein in it... the doctors diagnosis... 'bladder infection' and put me on antibiotics. I went in because I has dizzy and it was getting worse and I had terrible pain in my elbows. His explanation for the sore elbows was carpal tunnel! LOL So I had a bladder infection which I had no symptoms for and carpal tunnel and the dizziness went unexplained. Of course the antibiotics did nothing. I had no idea about lupus at the time, I thought maybe I just had some inner ear issue. When I went in for sore ankle and knee joints with occasionally hip joint pain, the doctor said I was overweight and that was the cause of my pain. He told me to lose weight. I was 5foot8 and weighed 73kgs, I was well within normal weight range and had I even been out of normal weight range, I would have had to been significantly obese to at that age have joint pain from weight! He got me a blood test which came back borderline thyroid deficient so he put me on thyroxine, but it did nothing at all so I stopped it and declared my doctor an idiot. Of course thyroxine at that stage would have done nothing, because I still had untreated lupus! I wish I had known about lupus back then. It probably would have prevented all the trouble I had when I had my daughter which ultimately provided my diagnosis. I hadn't heard of lupus until it crossed the rheumatologists lips.

    It was all so fast, my first rheumy visit just out of hospital from having my daughter (where I had a PE). My physician had an inkling and had run a bunch of tests. He gave me the results in our second and last appointment... he said to me "I am sure you have something fairly uncommon and mostly seen in 40 plus year old women. I want to make certain because you just seem so young, so I am sending you to a Rheumatologist for diagnosis. Did you want to go public or private?"
    It wasn't long before I was seeing a rheumy, I didnt know what to expect. He asked me a few questions, about my facial rash and joint pain. If I ever experienced swelling. About two minutes after I walked in he was telling me this: "I have been speaking with the physician, we have done a number of tests and although it is highly unusual for us to give such a certain diagnosis so quickly we both agree you have something known as systemic lupus erythematosus. But its no big deal, people live normal lives with it all the time. There are even famous footballers with this condition ((he said with a sly smile LOL)). You can work and play sports and enjoy life like anyone else. We will start you on plaquenil right away and if you need pain relief I recommend ibuprofen. Any questions?"
    I remember the part about the footballer so well... because I wonder to this day who the famous footballer is that has lupus and doesnt want anyone to know about it... lol I also remember asking no questions... because who ever can think to ask questions in such a circumstance?

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