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Thread: PHOTOSENSITIVITY in LUPUS

  1. #101
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    It'd be nice, wouldn't it, if there was a formula you could just plug data into, and get an answer? But again, it varies. I'm sure the bulb and the fixture influence, as would any plastic diffusion screen you'd put in front of the light. There was a warehouse store we go to, that prior to them changing their lighting in the store, I'd experience all sorts of weirdness after visiting there. We went there one rainy evening to get new tires on the car, and shopped. We were there for over two hours. A bit after we got home, I broke out with a rash, and did the malar thing on the face that "blistered" the worst I'd had up until that point. I missed several days of work from the flare. We couldn't figure out what happened to me, until a couple years later, they re-did their store, including the lighting, and they put up signs stating that their lighting was now "UV-Safe". I'd get a milder reaction from work when they had the old row flourescant lighting in there. Most of this
    http://en.wikipedia.org/wiki/Fluores...mps_and_health
    article I don't know about, but the "Other Conditions" section, I can attest to, both with the lupus and the migraines...
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Roger (09-16-2012)

  3. #102
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    Thanks to the Super Moderator, I went out and bought 100SPF face lotion after my first brush with the Maylar rash. Now I get out of the shower and spray my body down with 90 SPF, too (TMI, sorry). I had forgotten how bad the fatigue could get after going out until I read through this thread. It now explains why I practically crawl from my car to my bed if I go out during the day. I also have Raynauds (I know I can't be spelling these right) so I'm sure I would burn regardless. My eyes have been the most difficult aspect of all. During my last emergency visit, my glasses, shoes and Medicare card disappeared due to the intensity of the situation. I was devastated! First, I suffer also from Sjorns so my dry eyes hurt to begin with, then I'm nearly blind and add in the sun and I was in sad shape! I don't think my family understood why I was so unsure about using the phone or watching TV. Fortunately, I bought some cheap "reader" glasses until my other glasses were replaced.

    I can't put on a smiley face right now because I really don't feel like everything is going to turn out okay in the end (except in heaven, of course). So today I choose to do all I can to make things the best possible. And sunscreen is very reasonable way to begin!

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    Saysusie (12-05-2013)

  5. #103
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    I live in the dark and I lack blood so I need transfusions. Soon Anne Rice will be writing about people with Lupus.

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    Saysusie (12-05-2013)

  7. #104
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    so much good information here - recently diagnosed with the skin kind of lupus - but I used to get horrendous migraines and couldn't stand light then - I wonder if there is a connection?

  8. #105
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    I really believe so because my migraines where beyond horrible. Once they started treating me last year my migraines went away. I haven't had my medicine in a month and I have had horrible migraines two weekends in a row

  9. #106
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    I'm curious if anyone has had the itching reaction to the sun?

    It never used to be an issue for me until this year and on 2 occasions I have had relentless itching that lead to 3am oatmeal baths, deep bruising on my arms and legs (areas briefly exposed to the sun), itching in my sleep and near madness!!! One time lead me to a Medrol dose pak for relief.

    I have not been in the sun for more than 5 minutes since b/c I am terrified of what will happen. Even with a dermatologist brand of special sunblock.

  10. #107
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    HELLO missDIY! I too cant go into the sun (or ANY UV lighting!) or I ITCH ITCH ITCH....Along with BAD joint pain, nausea (I even have thrown up! EWWWY!),headache,brain fog.....I LITTERALLY will take a nap from how EXHAUSTED I can get from being in UV light for just 5 minutes... My rashes pop up all over my face and neck in one form or another..... Sometimes I even get ITCHY ALL OVER my body! Sometimes the rashes are not raised and subside once im in my "safe home" BUT soemtimes they ARE raised and can even bleed if Im "hit" by the light for too long....(Like a Drs appt or at a store).....YUCKY LUPUS!!!! No WOO HOO to THAT!
    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

  11. #108
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    Hi! I also have rashes. This also wasn't a problem until this year. I have a terrible summer I have to stay home because my rashes become blister and leave mark all around my face and neck.

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    Saysusie (05-16-2014)

  13. #109
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    lots of times i just try to carry on with life, but usually lupus gets in the way and i falter, i feel the same way u do, and most people can not empathize with us,

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    Saysusie (05-16-2014)

  15. #110
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    I also am very sensitive in the eyes to light. Have to wear shades when I go out. I like the evenings, I get to take my long sleeve shirt off, sun glasses and pretend I am normal for a bit :~}

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