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Thread: PHOTOSENSITIVITY in LUPUS

  1. #31
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    Hi Ssingh, i wanted to say that ironically enough i was talking to my neighbor the other day and i didnt have my sunglasses on and OMG, my eyes got worse than usual and my symptoms flared BAD. I feel pretty bad right now still too. Its lingering worse than ever. The only thing i did different about being outside in the sun were my lack of glasses. This is the first time my flare from the sun is THIS BAD. Ive flared before but NOT LIKE THIS. I feel like im fading away cuz its SO BAD. I thought i had some pretty bad flares but this TOPS them ALL and its kind of freaking me out.
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

  2. #32
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    awh jeannette, i hope that evil flare goes away SOOOOOON!!!!
    I'm Not Crazy, I'm Just A Little Lupie!

  3. #33
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    heyy. i just want to add to this thread, that not everyone with lupus is affected with the sunlight. although most are. i don't really have issues with the sun. the only thing is that if i am inside for a while, and go out where it is REALLY bright. i might get a slight headache. but other then that, i am perfectly fine in the sun. i actually was out all day today and nothing happened, thank goodness!
    I'm Not Crazy, I'm Just A Little Lupie!

  4. #34
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    I use to be just fine in sun for years with lupus. but it started last year after a flare. I get red indoor when it gets hot and sunlight is coming through windows/.
    My VIEW is this it depends how is your lupus overall, how I behave in SUN.

  5. #35
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    Thank you ashley! How sweet of you

    Yeah, i didnt have issues with the sun before either till last yr, but this yr is worse by far. Ive been flareing nonstop for a while now so i think you're right about where our Lupus is at at the moment. I get very RED too, evne from it coming in the windows as well. UGH Im red now as a matter of fact. the sun was coming in my porch window and BAM, now im worse. Oh well, im going to go rest soon.
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

  6. #36
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    yesterday we got to 80 degrees , I put last years sun screen on and went and trimed my roses up I was only in the sun 15-20 and poof I have a rash every where my skin was exposed except my face which I used a mineral make with a natraul sunscreen in it!

    So my advice to you if you have old sun screen it may not work this year! Buy fresh new stuff! Who new it would stop working --- Debbi

  7. #37
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    Two quick things. One, has everybody seen that Nuetragena just came out with a new 100+ sunblock? I just got some to try.
    And two, has anyone invested in the special clothes they sell with UV protection built in??
    I've looked at some online, but I'm a little hestitant with the price that they really work better than regular fabric clothes. If anyone has any knowledge it's appreciated!! Thanks!
    It takes both sunshine and rain to make a rainbow.

  8. #38
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    Default Sun, heat and humidity

    I have had symptoms from Lupus for over 10yrs. This spring I noticed my eyes hurt, my skin felt like it was burning, and I get physically sick anytime I go out in the sun. I had never had problems in the sun or heat till now. I have been on Methotrexate for over a year now and feel that is what has exacerbating the sensitivity, along with the Lithium I take for my bi-polarism.

    If I have learned anything, its that I take everything in stride and roll with the punches, because living with Lupus is never dull. Lupus is a challenge and I have never backed away from a challenge, and I don't plan on starting to anytime soon.

    Niki

  9. #39
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    Yup my sun photosensitivity just kicked in last week and I'm miserable. When I take the dogs to go out even for 10 minutes I'm done...full blown fatigue, nausea, headache Just curious if the heat or humidity make a differenece or just the sun itself. We've had a non-existent summer until last week and it's been getting into the mid to high 80's and 7-15% humidity.
    Spanglishqueen AKA Brenda or "B"

  10. #40
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    I don't know if anyone here has answered this cause to be honest, I didn't bother looking (sorry!) But...could anyone let me know this...How much exposure is too much? For example, I was feeling fine and I went outside to get my mail and talk to my sister- last less than 5 minutes and when I went back in, I felt kind of fatigued. Was that from that brief moment in the sun? I don't get rashes (not really anyhow) and so I often dismiss the sun as not being harmful...is this something I should really put more focus on?
    "The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy." -MLK, Jr.

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