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Thread: PHOTOSENSITIVITY in LUPUS

  1. #81
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    Cool You are so right!

    Quote Originally Posted by debstar View Post
    Yolly - Goodmorning
    You are also blond and very light skinned = easily sunburned! Try not to 'blame' everything on Lupus now that it has been diagnosed, it will only make it harder on yourself to accept it and deal with it. You have always been sensitive to the sun due to your fairness, and you still would be without Lupus. xoxo
    Yolly you are very very fair and sunburn would be very easy. Also being early diag often we all go through looking back and picking up on little things that may be associated with Lupus great to be aware but be very careful not to spend too much time looking back - my thoughts are if I spend half the energy looking forward then I can try and prepare for each day so that I can get the most of each day as I can eg. Planing out my rest time allows me to get a lot more done and satisfaction increases. Also with the photosensitive issue if I am not wrong it is not just sunburn but also the exhaustion from the sun uv lights. When I sit under a flurolightifeel like superman who has just sat near kriptinite. As Prof Fiona Wood who was the Australian of the year says "only mix with positive people if you want to get a job done!" great advice from Debs!
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

  2. #82
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    Last year whilst in Tunisia for a holiday I came out in what I can only describe as little blisters in one patch around my neck and on my shoulder on one side. I also felt extremely tired. I spoke to my GP on my return he said it sounded like shingles (no nerve pain) I'm now wondering if it was my lupus. I haven't been anywhere that sunny since so I guess I'll have to wait till the next holiday to find out

  3. #83
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    Quote Originally Posted by lucky7 View Post
    Wow, im happy i read this one too!

    I went to Florida to visit my inlaws and i was inthe sun with my daughter and when we got back to the house i flared so bad that i was done for the rest of the day! I almost threw up on the way back to the house and i got so tired i thought i was going to fall over.

    Light hurts my eyes so much these days too. I have trouble watching tv sometimes, it will kick in a migraine sometimes.



    My kids are having a hard time when i flare up,they're not used to mom being "out-of-it" so much. I'm the caretaker of so many of my friends and family that now their having a hard time understanding me not doing everything i've always done.

    I feel sad at times because of this. I'm also finding out that i really dont have TRUE FRIENDS. That hurts but i do try to be upbeat,I LOVE my animals thats for sure! They're there no matter what! LOL

    Actually my husband even kicked it up a notch in the taking care of the kids,house etc.!

    Out of something bad comes something good! Right? WOO HOO for that! LOL

    I have the same problem with my eyes too I always wear sunglasses outside and have blacked out my bedroom windows, I know with the true friends thing kind of hurts did me too. It's hard for people to understand, it took me a while to accept that but at least I have my family and my cat. I actually got my cat, Hunter, like a month before I first got sick and he really helped me get through the bad times when my friends and some of my family didn't.

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    That explains the migraines!! I spent 6 years of my life thinking that I had arthritis, I used to have episodes of migraine but I always thought it was just stress, It all makes sense now, unfortunately It's quite hard for me avoid sun because I live In a tropical place, so I have to learn to deal with it. =/

  5. #85
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    Quote Originally Posted by Tefy06 View Post
    That explains the migraines!! I spent 6 years of my life thinking that I had arthritis, I used to have episodes of migraine but I always thought it was just stress, It all makes sense now, unfortunately It's quite hard for me avoid sun because I live In a tropical place, so I have to learn to deal with it. =/
    I live in Texas so I understand having to learn to deal with it. That doesn't mean that you have to keep getting sick. They make sunscreens now that are 50 and over (I wear 75 on my body and 100 on my face). When I am going to be outside I wear UV protective clothing and hats. I may not be the prettiest girl in Texas but I would rather have it this way than to make my flares worse each time I go outside
    Mari

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    My cousin has sle and she goes tanning...I remember she wanted me to go tanning with her before her wedding last summer (this was before I got diagnosed), and I got really badly burned. Why is it that some SLE people are able to go tanning while others, (like me), need to really watch it in the sun?

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    Hi-Great thread. I would like to add that research done at the University of Pennsylvania Medical School by Dr. Virginia Werth has discovered a genetic basis for lupus photosensitivity. She believes that research in this area may give insight into what triggers the development of lupus.

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    I have a question. I don't know if this is because of the sun or if is just coincidence or who knows maybe its my imagination. After I have been in the sun for even just a 15 minutes or so, I my arms and face start to itch. Has anyone else experienced this?

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    Quote Originally Posted by Marine wife View Post
    I have a question. I don't know if this is because of the sun or if is just coincidence or who knows maybe its my imagination. After I have been in the sun for even just a 15 minutes or so, I my arms and face start to itch. Has anyone else experienced this?
    The sun does some horrible things to many of us. I get the itching but I also usually flare. As an example I was taken to the ER last week after mowing the grass. I know better to go outside without at least 75 UV sunblock (I use 100 on my face), long sleeves and a hat.

    So the short answer is yes... i do start to itch if I haven't taken precautions.
    Mari

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    ~Winston Churchill~







  11. #90
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    Me too! I get severe reactions to minimal sun exposure(better now that I have been on plaquenol for 11/2 yrs)

    I get itchy and rashes all over not just where the sun hits-I rarely go out without long sleeves and sunscreen.

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