Lupus Sufferers?

jodik_gwSeptember 6, 2008

I was diagnosed with Lupus many years ago... are there any other Lupus sufferers out there?

The last several months have been particularly difficult for me. How do you cope with your disease?

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According to my doctor, there is no definitive test for lupus, but based on my SED rate and ANA, she thinks that is my problem. The most important thing is to try and manage my life such that I rarely HAVE to be somewhere at a certain time and to recognize that between pain and the loss of sleep due to pain, I just can't operate the same as other people. It is really hard to do because I look healthy. When, as a child, I complained of leg cramps and loss of sleep I was basically told that I was a lazy liar. I still expect people to see me that way. I don't think they do, but I imagine it anyway and will sometimes over-do on that account. Good luck to you. I guess I don't have anything very useful to add. I am taking Lyrica on an intermittant basis. My doctor doesn't know this but the weight gain is so bad for me from Lyrica that I have to limit my exposure. It does help me sleep though

    Bookmark   September 14, 2008 at 3:54PM
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No, there is no definitive test, but through blood testing and a combination of other symptoms, it can be diagnosed.

I try to manage mine through nutrition, and I take echinacea to help boost my immune system, purified fish oil and chondroitin for my joints, and painkillers to help cope with the severe pain.

I also have horrible insomnia, and other health problems due to injuries from an auto accident.

Good luck to you, too... I hope you can find a doctor that recognizes and accepts and treats this disease... it is as real as any other disease, and can be very debilitating.

    Bookmark   January 28, 2009 at 1:09PM
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