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Old 11-10-2007, 03:20 PM   #1
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Join Date: Dec 2004
Location: Bakersfield, CA
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mygrils HB User
Question ??? about photosensitivity

Hey all!

I was just diagnosed with Lupus in April and my main symptoms were fatigue and joint pain. Today I was outside from 6:00 AM until 10:00 AM with some sun exposure. When I came inside I felt like I had received a sun burn. My face is slightly reddened...but not that bad. I guess I'm looking for the "textbook" rash...have any of you had these symptoms?

Thanks for the help!

 
Old 11-12-2007, 09:54 PM   #2
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Join Date: Nov 2007
Location: Southeast US
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mysobriquet HB User
Re: ??? about photosensitivity

well, my photosensitivty is as follows...

today's example... i ate lunch very near a window and then sat outside w/a friend... totaling no more than 1 hour... tonight, i feel like i have the flu... my eyes burn and everything aches... even a mouth ulcer has popped up...

it was quick reacting b/c i'm already in a flare... sitting in the sun was stupid, ive been dealing w/this for years and i knew better...

for me, the sun is like poison... and how strong i am physically dictates how much sun i can handle before it makes me sick... now, since i'm compromised, i couldn't take much...

it is accumulative for me... it builds up over time... even outside of a flare... like day 1, i might be fine... day 4, i'll probably get a huge raised rash wherever the sun hits within 15 minutes of exposure ... hives on shoulders, neck, back, face, arms, etc... day 8, if i keep being stupid and going out in direct sun, i'll start to get sores that start as little pimples but hurt and then scab over... they'll scar...

when i had a convertible, i'd get sores on my scalp.. and when i worked teaching preschool, i had them all over my arms... and would lose lots of hair... and was so sick i could barely walk... the sun is one of my most major triggers... hormones and stress are up there...but sun definitely is the biggie

i just know that i have to avoid the sun... it's hard... i live at the beach and i work for a living... so i can't be a *******... i pay for it when i'm out there too long for too many days...

BUT...it's different for everyone... good luck figuring out what works for you


oh, about the rash on my face... it's pretty much always present now... it's only raised, sore, or scabbed during a serious flare... but it's permanent over the last 2 years... it doesn't go away now and make up doesn't cover it... it extends on both checks and under my neck on my left side of my face... good times... it's only sometimes affected by the sun... it's just always there... but again, everyone is different

Last edited by mysobriquet; 11-12-2007 at 09:56 PM. Reason: rash talk...

 
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Old 11-13-2007, 06:03 PM   #3
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Join Date: Nov 2007
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mrsfoamy HB User
Re: ??? about photosensitivity

Mu sun sensitivity is weird. I can go through periods where I can sun as much as the next person, but I've also been known to break out in hives or get the symptoms of heat exaustion before too. If I'm feeling sick, I know just to stay out of the sun.

 
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