Hi Everyone! I was wondering if any of you have reacts to the sun? I am and I'm not sure if it is the common reaction to sun with Lupus. Sometimes I just feel very unwell in the sun, sometimes I get rashes but most recently I have been having what seems to be an allergic reaction.. my throat starts to swell and sometimes other places like my forehead. Does anyone else have this problem? I feel like I'm wasting beautiful weather indoors.. I'm 26 and want to go to the beach with my friends. Please help!
Hello MichelleM87! I have lupus also and have a bad reaction in the sun. It completely drains me for days it’s the weirdest thing. I do get a rash on my face also. I think my Rheumy called it the butterfly rash it’s mostly on my cheeks. My eyes get so dry they hurt and feel like I have grits of sand in them for days. It is really hard to stay out of the sun because my family and I love going to the beach also! Try this if you already haven’t. I know you want to lay in the sun but if your having these reactions you especially don’t want to stop breathing if your throat swells. This is what I do I makes sure I take a big umbrella to the beach that I can put in the sand and you can also wear a hat. Make sure you have sunscreen on and just keep yourself in the shade. It was strange for me at first bust then my friends and family figured out that this helped me not flare up and now they’re reminding me about the umbrella and stuff lol! You may still have a little reaction I do like fatigue but hopefully you won’t have the others as long as you keep yourself covered and out of direct contact with the sun. Hope that helps some take care!
Hi Michelle,
I’m in Florida, and love the beach and the sun. Unfortunately, the sun doesn’t love me. I have noticed that my fatigue,joint pain and sleep issues worsen after sun exposure. I am incredibly bummed!
Hi! I am sun /heat sensitive. I cannot be out in the sun at all. I get very sick. Rash, extreme fatigue, nausea headache, sore joints. I have to wear gloves when I drive also because of the sun.
HELLO MICHELLE,
FACT IS LUPUS HAS MANY REACTIONS, TO THE SUN AND NOT POSITIVE ONES. EVERYONE IS DIFFERENT, I THINK THAT VARY’S ON EVERYONE’S SYSYEM. SOME MAYBE WORSE THAN OTHERS. THE KEY IS NOT TO DO THINGS YOUR BODY DOESN’T LIKE , AVOID ANY TYPE OF FLARE. USE SUNSCREEN AND COVER UP, LONG SLEEVES, AND UMBRELLA. THE ONLY WAY YOU CAN ENJOY WITH OUT MAKING THE LUPUS ANGRY. EARLY MORNINGS OR LATE AFTERNOON ARE BEST, AVOID HIGH NOON!
The sun also bothers me, my face breaks out in a rash all the time and get fatigued if I spend too long outside. As much as I hate missing out on the warm days if it’s too hot I stay in when the sun is at it’s brightest.
Hi from what I have read and am experiencing the sun is really bad for you. Makes you flare in rashes and blisters, joint pain I also get a tingling sensation on my legs and weakness you need to wear a lot of sunblock and long sleeves ,shades to protect your eyes and carry an umbrella if you can when you are out I can only be out for 20-30 at a time if I have too if not rather not. But would be best for you to ask your doctor as well that’s what mine recommended and what I’ve learned from what I’ve read here 
I have this too, even if I am under fluorescent lighting , it sends me into a flare. It’s called Photosensitivity, and it’s on the Rheumatology Lupus 11 list. Always wear a lot of sun screen, big hats and sun clothing or long sleeve shirts or use an umbrella and stay in the shade as much as possible. The best times to go out are before 9am and after 4 pm, so says my doc. They make special sun clothing that is very tight weaved, but it’s expensive. One site is coolibar.com and they have pretty nice clothing, but like I said, expensive.
If you really want to go to the beach with your friends then get a sunsuit. It’s like a rash guard but it covers you from neck to ankles. I just use a really high SPF, a long sleeve rashguard/sunguard, a wide brimmed hat, and enormous wrap around sunglasses. I live in CA so the sun is always there. Lately I’ve been getting light headed and seated from it but that started when I started cellcept. I’ve always gotten ashes from the sun so that’s nothing new. If you don’t want to be pale then have a friend apply sunless tanner, just remember to exfoliate and apply moisturizer around knees, elbows, feet, etc… That way they won’t be darker than the rest of you. I’m sorry that you have to deal with it but I think we all do to a certain extent. Hope this helps.
Hi....I went outside from work just to go to lunch...my face swelled so bad when the sun hit it you would of thought someone put me on 300mg of steroids....after about 5 years I can go out but I wear a hat...always...I use to get rashes and the horrible itching ...but thank goodness that went away too or I got use to it...lol not sure...its hard getting hit with this at such a young age...I know I was young to at one time ...but I still lived...take a umbrella ..hat...sunscreen...etc....also rest up for the weekend...and have fun....
Thank you all so much for your responses! I now see that this is not just a me thing, it’s a lupus thing! I am learning that I’m going to have to change some things in my life whether I like it or not lol! I see my rheumatologist on Thursday so I hope she can give me some tips also! But I’m seeing now that the beach is a lot less important then my health. Thanks again! I was freaking out! I am very grateful for the support you all and this site gives. 
Michelle
The LFA just recently highlighted an archived article about UV effects, give it a read! Shares some people's personal experiences of more severe sensitivity and ways to protect yourself, but also explains some of the science behind why it happens :)
I'm your same age, and I definitely understand the frustration! I live on the sunny side of the San Francisco Bay now, so the sun is always a blessing/curse. To make matters worse, I'm from Seattle and grew up with an intense desire to enjoy sun whenever it's out! I'm sensitive enough that, like Mary, I have to limit midday sun as much as possible even with a sun hat and sunscreen, with 20min or more cumulative giving me rash symptoms. If I get too big a dose, more than say 30min of midday or 1.5-2hrs evening, it gives me nervous system symptoms (one of my main lupus activity areas) and/or starts up a mini-flare (that I'm sure is a warning that even more exposure would cause a worse flare!) It really is a risk beyond just what shows on your skin. I basically stay indoors most of the time, and even away from bright windows, and limit fluorescent light/light in general in the evening (I also have sleep issues, so this is also supposedly good for keeping my circadian clock on time, but it doesn't really help that much.)
If do something outside for an extended period of time, I just shoot for an evening window. See if your friends want to hit the beach for a beautiful sunset instead! Guessing they'll be there earlier too, but if you show up later with drinks and snacks I bet you can get them to stay :) (I don't drink and don't advise it, but maybe they do.)
Brynn
Well that is really common try to use sunblock of 70 or more. I have good results from aveno and neutrogena.take care
the sun definitely wipes me out and makes some of my symptoms worse. My joints swell, I get over heated really quickly, my discoid lupus gets worse, no amount of sun block seems to prevent it, to add insult to injury I live in florida
I can't take too much sun. I find that I can drive in the car for about 15 minutes but after that I will be in trouble. I put on sunblock before I get dressed if I I will be in the sun longer than 15 minutes. I am going to get my windows treated too.
Thank you so much for this much needed information :)
Faladora said:
The LFA just recently highlighted an archived article about UV effects, give it a read! Shares some people's personal experiences of more severe sensitivity and ways to protect yourself, but also explains some of the science behind why it happens :)
http://www.lupus.org/magazine/entry/uv-exposure-what-you-need-to-kn...
I'm your same age, and I definitely understand the frustration! I live on the sunny side of the San Francisco Bay now, so the sun is always a blessing/curse. To make matters worse, I'm from Seattle and grew up with an intense desire to enjoy sun whenever it's out! I'm sensitive enough that, like Mary, I have to limit midday sun as much as possible even with a sun hat and sunscreen, with 20min or more cumulative giving me rash symptoms. If I get too big a dose, more than say 30min of midday or 1.5-2hrs evening, it gives me nervous system symptoms (one of my main lupus activity areas) and/or starts up a mini-flare (that I'm sure is a warning that even more exposure would cause a worse flare!) It really is a risk beyond just what shows on your skin. I basically stay indoors most of the time, and even away from bright windows, and limit fluorescent light/light in general in the evening (I also have sleep issues, so this is also supposedly good for keeping my circadian clock on time, but it doesn't really help that much.)
If do something outside for an extended period of time, I just shoot for an evening window. See if your friends want to hit the beach for a beautiful sunset instead! Guessing they'll be there earlier too, but if you show up later with drinks and snacks I bet you can get them to stay :) (I don't drink and don't advise it, but maybe they do.)
Brynn
I feel nauseous in the sun and my eyes burn. I haven’t found anything that helps other than drinking a lot of water and not staying out for very long. Sucks 
Don’t forget to sunscreen under clothes. My ex husband loves the beach. Whenever we would go he would put up a screened dining tent . it was so much cooler and saved me from the sun. I was able to spend the day out and protected