Help! Need everyone's wisdom

Hi everyone,

New to SLE, and my doc told me to stay out of the sun. Well i'm a little stuborn, and love to garage sale. So Friday my friend and I went in the morning but was very hot and muggy out! By the time I got home, My neck, head, and eyes were killing me. Woke up next day, (still with pain), went back out in mid morning, to return to a couple, heat was worse than day before! My AC doesn't work in my Jeep, and by the time I got back, my whole body was shaking, I had rashes at the corners of my eyes and underneath (I had sunglasses on, cannot go without them even in the winter) head, neck, and eyes worse. Yesterday still could not get rid of pain, took muscle relaxer finally, feel better this morning, but woke up with swollen hands and feet! Eyes still hurt where rash is. Has anyone had this happen, and what should I do?

I cherish all of you on here as I have no one else who cares to listen!

God Bless You All!

While I haven't had that bad of a reaction YET, I can certainly sympathize! I'm stubborn too. I did some yard work sat and have been reeling from the ill effects of the sun since. I'm trying to learn to stay out of the sun between 10am and 4pm (maybe even longer). Wear long sleeves, hat, sunglasses and most important sunblock! My dermatologist recommends sunblock 70 or over. If you're still hurting today, maybe call your dr. Please take care and don't do that again! ((hugs))


Thank You Nates tired mom. I made an appt. for this afternoon, not for this (but will discuss), but have been fighhting sinus/head cold, now my ears are plugging, so I think I probably have a sinus injection.

I get sunburn just driving in a car to the store. You are just going to have to learn to not only be hyper-vigilant in the sun but make sunscreen a part of your beauty regimen. At least 70 if not higher. It definitely is worst during a flare, but can bring on a flare of it's own. Don't forget your ears, neck and d├ęcolletage area. A light weight shirt can be a great barrier. You can also get a disposition to have your car's windows tinted darker than is normally legal. It can be a great help.

Your skin is an organ and senses the sun as an assault like any of your internal organs and your immune system immediately goes into hyper-drive to protect it. It may take a while to feel better, but tepid or cool baths could help with pain relief, but without a doubt make sure you are getting plenty of fluids to offset what your body is using to fight the perceived assault.

And like nates mom says "Don't do that again :)"

It is not the heat but sensitivity to the sun's rays that SLE patients need to worry about - the heat will make you miserable but the sun is what actually triggers a flare - so we all learn to avoid the sun wear sunblock and cover up I also had a script for a bolus of prednisone for those days I had to be out in the sun which helped me

The sun's ray are dangerous to us, but the heat also affects me and adds to my fatigue. After a shower, the sauna at the Y and I had to get out immediately. I don't get a rash, but it does affect me really bad. Last summer, I worked still in the warehouse and I was absolutely miserable. So it can affect some of us worse than others. We all have to treat ourselves as we are photo sensitive even if we don't have visible signs. Take care of yourself and protect yourself from the sun.