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Thread: new here and upset

  1. #1
    Join Date
    May 2013
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    Default new here and upset

    i have been sick for 15 years with no answers until now. my rheumy diagnosed me with fibromyalgia and said i have borderline lupus, but she would not be treating me for lupus until my blood test results from today come back and she gets further confirmation, what the heck, . i was sure this visit would give me an answer as i am sick and tired of being sick and tired. I dont want to have lupus i just want to know what is wrong with me so i can try and get better. also i live in a very small town in alabama and have to travel 21/2 hours one way just to see her. i have been reading some of your posts and i have every symptoms and then some that you guys have and i have had a positive ana, high sed rate and crp levels are high, every other test was normal-i am so sick and have so much pain, especially knee pain i cant walk and no im not overweight. my newest symptom was a red scaly rash under my eye that has now turned black, literally, turned black overnight and i look like a racoon as the other eye seems to be turning too, my eyes hurt, are swollen, and are often dry, my feet also hurt which makes it difficult to walk, i literally need a wheelchair and im 43 years old. i am very depressed and have lots of anxiety from years of sickness. i think because i have not had a butterfly rash across my face she wont give me a diagnosis but i have had rashes for years that come and go and she knows this. if anybody can give me any advice i would greatly appreciate it. if this is fibromyalgia i have it is pure hell, but i dont have those trigger points that are spoken of and i told her this, i feel like a 90 year old woman and any advice would be greatly appreciated, kel

  2. #2
    Join Date
    May 2013
    Thanked 42 Times in 31 Posts


    Hi Kel!
    Sorry to hear how poorly you are.
    I'm not as poorly as you, but I did wait forever for a diagnosis so I know how that feels. I was first ill when I was seventeen and only a couple of years ago did I realise that at last SLE was on my notes!
    I do realise how hard it is to be poorly and to feel like you're just waiting for someone to say the words.
    Sorry I don't have any advice except live each day as it comes and hang on as best you can. Listen to your body and do all the self help advice you can apply from the lupus information.
    (I'm a newbie here, someone wiser will stop by soon!)

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