OK I have a question and I'm wondering if anyone can help. I have been diagnosed with Lupus and my Rheumy tells me to "stay out of the sun" but here's my problem/question. I already have a great tan and I don't have any reactions when I have been in the sun. As a matter of fact I feel being outside and also in the sun actually helps me feel better. Now I am not talking about getting burned because that is not good for anyone but I do feel better after being outside and I already have a very good tan. What is supposed to happen when a person with Lupus gets in the sun. Do you have a dermatalogical response like hives or a rash or does it bring on a flare? I feel as though being in the sun more over the last month has helped me feel better so I am really wondering.
Good question Joni. my daughter have Lupus and she says the same She feels better when is sunny days and she is outside I'm the one who tells her to don't stay in the sun because sun suppose to make you have a flare or rash. Lupus makes many people feel very sick after being exposed to sun. My daughter has joint pain in cloudy or rainy days. Lupus works in different ways I guess. I just feel terrible for my daughter I wish I can take her pain and deal with this disease not her I guess all mothers feels the same. Do you know what low creatinine means and High Neutro? Those test beside ANA came back abnormal and I don;t know what they mean. Her ANA titier is 1:2560 high to the roof and she is 3 months pregnant. Doc told her to take baby aspirin Please help if you know what those means. Thanks!
I think most every lupus "victim" has different reactions. For me, if I'm in the sun for more than an hour, I spend many hours sleeping. I can't wake up the next day, and sometimes have gotten the chills and and a fever from being in the sun. The chills and fever lasted a couple days--three days, I think. The day before Easter, I was in the sun washing screens and had on lots of clothing, so the only thing uncovered was my head and my lower arms. I never woke up on Easter. I totally missed easter and my grandson searching for eggs. Also, the sun makes my joints hurt worse the next entire week. When I first got diagnosed with Lupus, I was losing my hair and the brightness of the sun caused INTENSE PAIN behind my eyeballs. I couldn't keep them open outside. Which is why many older lupus patients wear very dark sunglasses that wrap around their faces.
For my daughter, it makes her break out in funky spots, big round white dry spots that stay white, no matter how dark the rest of her gets.
I have noticed that if I'm in the sun after 5 p.m. or before 9 a.m., I can stay out longer and not have any problems. So the intensity of the UV rays makes a difference. I also cannot get into a tanning bed as it gives the same reactions.
The last Lupus Now magazine I received was about teens that have Lupus and how they cope. Many of them talked about the sun making them hurt and sleep, but a couple of them said they have never had any problems with the sun. One said he did a bicycle ride around many states in the full sun of the day, and never had any problems. So, obviously, it's dependant on your body, and what type of immune response you'll have. Good luck. It's obvious that you're one of the lucky ones where the sun is concerned. I have a swimming pool in the backyard and can no longer enjoy it unless it's still hot at night, after the sun goes down.
I get very ill if I am in the sun to long. I don't why it happens, but it does. I get a fever and feel really crappy...something like the flu. It also gives me a ripping headache. I haven't tried a tanning bed, I am afraid it.
It only take about an hour before I feel ill. I get a massive headache, body aches, nausea and massive fatigue. Pretty lousy since I live on Long Island surrounded by beautful beaches ! I also get sores which become painful, even on my head, which ooz.
I am so sorry you have that reaction from the sun. I wish I lived near a beautiful beach, at least maybe you can enjoy the view. The closest beach to me is Galveston and it's not so pretty. What's it like on Long Island? Whenever I try to escape (in my mind) I am always on an island.
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