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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
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    what meds are you on

  11. #11
    Super Member butterflies5518's Avatar
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    Quote Originally Posted by sammy89
    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.
    We live in Houston, so she wears a ball cap alot. Her 12 yr old plays football so she uses sunscreen (had to try several brands) and hats. This always triggers her flare ups but she discusses this with her doctor so he is aware of her trigger - keep a journal when you notice simple things, gives you a time line that you'll have to use for future recognition

  12. #12

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    Check out www.mercola.com. Alternative health doctor. Use the search at the top. He has a million articles. I use his sight all the time. Right now I'm dealing with gall bladder issues. Doctors want to take it out only 2 wks after having my very first symptom. What about trying something alternative first? Well that's what I'm trying to do. Seems to be working so far. Dr Mercola's site helped me a lot. He also says that over a million americans get their gall bladder out each yr, when in reality, only a few thousand really needed to have it removed. Sign up for his newsletter. They are all very interesting.

  13. #13
    Power Poster ckcowl's Avatar
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    VISIT THE AMERICAN LUPIS FOUNDATION! they have much information - can help you with ALOT- including support group-keep you up to date on changes- help-
    good place to start after your diagnosis
    good luck managing- i have a sister in law who's been 10 years now dealing---thank goodness for the foundation!

  14. #14
    Senior Member kacklebird's Avatar
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    Sammy, Sorry about my late response. I have Lupus too. I recommend joining a local support and online group. They were a huge help. Not that your family won't be, but no one can truly understand what it's like unless they live it. Feel free to PM me if you have questions. I'll be more than happy to help or at least guide you in the right direction. Are you on Plaquenil or Prednisone?
    Take care,
    Kathy
    Hugs xxxx I know how difficult and life changing this disease can be.

  15. #15
    Super Member Sienna's GiGi's Avatar
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    I have a friend and an aunt with Lupus. God Bless you and I pray that you find releif and comfort.

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