The sun's rays start causing cellular damage almost immediately- for most people this is not a problem because their body can easily handle the small amount of damage normal sun exposure causes. Unfortunately, in many lupus patients this damage causes the over active immune system to become even more active. Thus many will feel ill and/or have a flare if they spend time in the sun. I have extremely fair skin and have always- I do mean ALWAYS because this was a problem for me even as an infant- had odd reactions to the sun. I get headaches, nauseated, start sweating even if I am cold, have chills, and a few other problems within 5 minutes of being in the sun with heavy duty sunscreen. If I am out longer it becomes much worse. 5 minutes is enough to bring out the malar/butterfly rash for me. I burn very quickly too. Within 10 minutes my skin begins to burn (I use 50SPF sunscreen or higher if I know I will have any sun exposure otherwise it would be even worse). I am one of the unlucky ones in that for me the sun sensitivity is so horrid. Sun sensitivity can come in varying degrees of severity. My rheumy says that mine is one of the worst she has ever seen. My husband and I joke about my needing to live on Vampire central time. The only time I go outside in daylight is when there is something that I have to do which cannot be done after the sun goes down. All of our windows are covered 100% of the time and when we buy a car we make sure the windows have a special anti-uv film on them to help protect me while I am stuck in the car.
As for feeling like you haven't slept in days, yeah that is part of lupus especially after an illness or during a flare.
I hope that this helps, I am sure others will respond as well. I have a suggestion, try and get ahold of THE LUPUS BOOK by Dr Wallace and visit www.butyoudontlooksick.com they are both wonderful resources and the website has something called the spoon theory that can help explain how lupus affects your life to others who may not otherwise have a clue.
I am so grateful to the person who wrote The Spoon Theory. I read it to my high school students every year, and introduce "my" lupus when we talk about people with disabilitities. I love the tshirts on the "butyoudon'tlooksick" website. My youngest daughter had a mantra of criticism directed to my then as yet not diagnosed symptoms: (said with a snarl) If you'd just get out and get some exercise, everybody gets tired, you don't look sick, etc" and she really did look ashamed when I bought a tshirt that quoted her comments almost exactly. And both my daughters shared some regrets as they "don't understand why they were so mean" and not as supportive as they should have been. And I do understand it is a teenage girl dynamic kind of a thing. Again, my thanks for The Spoon Theory. And mom46, I, too, regret not being able to be in the sun. For years as a teenager, I got 'sun poisoning' until I got a deep tan. Now, even light exposure gives me such an unpleasant itching tingling rash and malaise, I can hardly stand it. Sun block gives me a local allergic reaction, too, so I wear long sleeves and pants, a hat, and stay under a sheet or blanket sitting in the shade whenever I go outside. I miss the sun the most, I think. I had pneumonia in Jan. and again for the past 3 weeks, and now I am battling a flare of exhaustion, joint pain, and such systemic muscle weakness I could cry if I had the energy. Someone posted a comment 'ants in my pants' and I went WOW, what a good way to describe my feeling so anxious like ants crawling under my skin. My legs burn and tingle worse than my arms, and nighttime is the worst, as I literally weaken as the day goes by.
hugs to you all