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Thread: lupus

  1. #1
    Senior Member
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    I know we have a lot of nurses here on the board.Can anybody tell me about lupus and help me to live with it.After 1 year having tests and tests done and seen almost every doctor in town(seems like it) i got diagnosed with lupus.Any advice??

  2. #2
    Super Member sewmuch's Avatar
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    No advise here, but have a couple friends that live with it
    quite well, they stay out of the sun...

  3. #3
    Power Poster amma's Avatar
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    Here is a website that my aunt used, very informative :D:D:D

    http://www.mayoclinic.com/health/lupus/DS00115

  4. #4
    Super Member Dolphyngyrl's Avatar
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    My mom had it and RA, best advice I can give is stay active and mobile, it really keeps you going. Also, stay current with medications.

  5. #5
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    I was diagnosed in 1990 after going to various Drs. I take my medicines every day. Some days are really bad but most are good. I hope you feel good soon

  6. #6
    Super Member thimblebug6000's Avatar
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    Another thought....my niece was diagnosed (misdiagnosed) with Lupus after building a home... eventually they found out it was the chemicals in her carpeting that were causing the reactions that looked/acted like Lupus. I guess you've had as many tests as you can, but please consider this possibility as well, and try to limit your inter-action with chemically treated products.

  7. #7
    Super Member butterflies5518's Avatar
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    My DD has lupus. She has to control her weight, limit stress, rountine doctor and dermatologist and lab work and lots of steriods. She did do an FDA study for Lupus using Vitamin A that was very helpful. Lupus is an autoimmune disease. There are several websites with chat rooms for sharing what you are going thru - she found a common ground here that helps on those days that you are angry, scared or just want to vent. She recently lost 50# which significantly helped her flare ups. She also has "bump's" along her cheekbones (like the singer Seal) but hers come and go with stress, so she sees a dermatologist. Take one day at a time, exercise, eat well and rest when you feel overdone. She is a great believer of naps.

    **there are always studies going on, maybe one in your local area to participate in

  8. #8
    starlight's Avatar
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    I was diagnosed four years ago with Lupus, I also have fibromylgia. Take your medicine avoid the sun, get as much rest as you can. Talk to your doctor if the medicine is not working. There are a lot of us on here with lupus and so much support. Above all take it one day at a time.

  9. #9
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    thanks for all the replies u guys already gave me a lil hope.I also have fibro and athritis which dont make it easier.To stay out of the sun is not easy here in Texas.

  10. #10
    Senior Member
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    what meds are you on

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