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Sandra
05-22-2009, 01:40 PM
Hi am I new to this forum, and newly diagnosed.
I am a long way from my rheumatologist and respirologist and endocronologist so I don't get much time to ask questions.
I would like to know what it is about sunshine that messes things up so bad.
Yesterday I went to my 91 year old Uncle's Auction as he has moved into senior's care living, so I wanted to be ther for my cousin his daughter as they were selling off everything she had grown up with.
It was sunny and sometimes even hot. I wore my UV hat and long sleeves and big UV sun glasses and a # 30 sunscreen. But I wake up today with my throat so raw I can hardly swallow,face rash,miserable fatigue, itchy/prickely, my eyes hurt/burn and I have a bit of a temperature.???
Can someone explain this sun issue to me and is there anything elses i should do to do or avoid? Thanks Sandra

Rastagirl
05-22-2009, 03:09 PM
Sorry you feel terrible today, Sandra. Hugs to you.. :hug:

I hate to have to tell you, but sometimes you can do ALL the right things to protect yourself....take every precaution you can think of....and it'll still cause you to flare. Just because you dress appropriately and use your sunscreen, that still isn't a guarantee it's not going to cause a flare.

I'm not sure it's completely understood why the sun can do this to us, but with this illness, you become very sensitive to Ultraviolet light...from the sun and flourescent lighting.

When you're Lupus is active...meaning you are not in a remission but having flares off and on, then the sun, any amount of sun, can cause you to flare and have all the symptoms you describe. I have had it make me violently ill after just 10 minutes before. Even got a horrible migraine and nearly passed out from just getting a small patch on my arm while riding in a car one day.

I know it puts limits on your life and that's so frustrating, especially with summer approaching, but for a period of time, I could not get ANY sun on me at all. I was stuck inside, except for very early morning and evening, after the sunset.

So sorry....I hope you start feeling better soon.

Fondly,

:cool2: Lori

Pearl
05-22-2009, 03:18 PM
Just wanted to welcome you. Sorry you are suffering. Lori is right - sometimes, now matter what you do, IT decides to have a heyday with you. (Some days, I refer to Lupus as IT...I don't want to give IT the respect of a name....isn't that silly?)

Take care of yourself. Get some rest and hopefully, this flare will subside soon. I hope you are feeling better soon.

rob
05-22-2009, 03:31 PM
Hi Sandra,

Lori is right in that it's not really understood why sunlight triggers flares. And like Lori and Pearl, I too have days where I have done everything possible to protect myself from the sun, yet I have a flare anyway. Your symptoms sound nearly identical to mine right down to the mild fever and raw throat. I never seem to get the rash on my face though. Lupus is just weird. It's so unpredictable, and there's so little really known about it.

I wish there were answers. Anyway, one thing that would not hurt is to get a higher SPF sunblock. I do something I call "sun discipline". Basically I stick to any and all shade at all times regardless of where I am. It sounds like a pain in the butt, but once I made a habit out of it, it just comes naturally. I wear a wide brim hat of course, good sunglasses-the works. When I do get a flare from the sun, it usually does not last long, usually two days for me. I hope you feel better soon.

Rob

scubagramplit
05-22-2009, 10:50 PM
Hi Sandra, I must ad on Rob's comment about the sun block, I don't remember where I read it(imaging that for me lately)but it was highly recommended that those of us with autoimune disease should do the sunblock and not the sunscreen. I hope it is allright to quot a product name, I use Coppertone Water Babies(doesn't irritate my skin) it is a sunscreen lotion however it is spf 70+, seems to be working well for me. And I too will go out of my way to stay in the shade if possible. I have an extra wide brim on my hat(see pictures in album), I call it my juan valdez hat, and lather up whith the sunscreen every morning before leaving the house, some times even if I am staying in the house. Good luck. Jim.

mountaindreamer
05-23-2009, 08:14 AM
hi sandra,

you have already received great advice from members here, i just want to jump in and tell you that i am sorry you are in a flare. Like Rob, my flares from sun exposure usually only last a day or two.

Also, i don't know if spf 30 is strong enough. Sun block (not suncreen) is imiportant, and i don't use anything less than 50. I understand that Target even has a sunblock of 100 - i am going to try to find this. I too, try to always stay in the shade...it just doesn't take long to start feeling badly, and once it starts, it doesn't stop...

As far as your question of Why the sun, sorry, i don't have an answer, i just accept this as part of my new life. I grew up in the south never wearing hats and sun screen...an i never wore long sleeves in the summer. But, my new normal requires all of these.

froggal
05-23-2009, 10:50 AM
I have very similar symptoms . . . raw throat and severe rash when I hang out in the sun. I, however, can be in the sun for about and hour if I take the proper precautions. I think that you just have to find what works for your body because everyone is different. Just keep trying things until you find what works! Good luck!