Since a lot of people in discussions seem to be fairly new to lupus, I thought I’d say something about sun sensitivity. Just my experience, I’m not an expert. I was sick for 8 years, but I didn’t think I was sun sensitive until a few years after I was diagnosed, because I was reading about horrible reactions to the sun, like kidney failure. It was in the eighties that I first got so sick.
I got most of my exercise walking outside, and I came to believe that I was exercising too much- I’d feel weak and feverish and exhausted for three days. When I joined a gym with my sister, I discovered it was the sun! It was a real shock, 11 years later.
The newsletter from Lupus.org had a list of questions answered by an expert recently, and most of the questions actually mentioned the exact same three days of exhaustion and fever. A lot of my earliest symptoms were related to the sun,so I think people should consider this possibility.
If you are sun sensitive, there are things to help when you are outside.
Cover up. I usually wear a light weight long shirt over my t-shirts. I usually wear shorts, but I mostly stay out of the sun. If you are going to be exposed longer, lightweight long pants are be good. If I think I may be walking around a lot, I wear a hat. Since all the light clothes can let sun through, I wash those with a product called Sun Guard, that I bought on Amazon. It comes in little boxes the right size for a wash. It lasts for 5 washes, and hasn’t bothered my skin.
Sun Screen.We are supposed to use a fairly strong sunscreen. I don’t like sunscreen, but the “Neutrogena Ultra Sheer Dry Touch” isn’t so greasy, and I will wear it. I’m sure other people have stuff they prefer. And I’d love to hear about it. I am super-sensitive to zinc, too, which is in a lot of sun screen.
Someone mentioned in a discussion recently that florescent lighting can also cause sun sensitivity. Someone makes sleeves for the bulbs, but I don’t know where to get them. Probably Amazon, though, if someone knows what the name of the product is.
Restaurants and Parking Lots. A lot of my friends like to eat outside. I am willing to be unpleasant about it if I can’t be in the shade (for such a long time.) Usually people will give me shade. The last time I decided not to make a fuss, I was sick and really shaky for a week. Another major problem is parking lots- whenever I go anywhere, people hate to say goodbye and stand around in the parking lot and talk. If I suggest moving to the shade, they say they’re really in a hurry and keep talking. Oh, well, it’s usually not too long. If it is, I apologize and leave. Most of my friends actually do know I have lupus- heck, a lot of near-strangers know ! I think people need to be aware that they know someone with lupus. I’m a lupus ambassador.
That’s all I’ve got. If you have better ideas or comments, or questions, that’s great. I just keep reading how tired everyone is, and almost no one mentions the sun as a possible cause for some of it.
I had my first flare up after a 5 day stay at the beach. I figure that makes me Sun sensitive :(
I’d say so.
I should also mention that sun sensitivity causes rashes for some people. The malar butterfly rash is caused by sun exposure, though I’m pretty sure it can come from past exposure to the sun. Being touched by sunlight also makes me itch a lot. I think the Butterfly rash would indicate sun sensitivity. It can make your joints ache, as well as cause Low grade fever and tiredness, which I already mentioned. But I did want to mention the butterfly rash (which can look and feel different looking in different people, but it will have the redness in any kind of rash on your cheeks and nose.)i never minded the malar rash that much, I have avery pale skin and I get a very flat pinkish redness, though I’m not crazy about my Rudolf nose. A lot of people cover up with makeup. I’ve never had anyone mention my red cheeks to me, but I get questions about my bright red feet. I think that’s a malar type rash, too. I have lupus in the skin of my feet they swell up, turn red and they hurt. It throws off my balance.
Thank you! A MUST READ for everyone with lupus... you described it so clearly, simply but with details... I'm so impressed, I try to get this point across sometimes but just don't have the right words to describe it.
Sorry to hear you're zinc sensitive, because I have several great sunscreen recommendations for natural and lovely forumlations... all zinc based! If you want to avoid the chemical sunscreens, look for ones that use Titanium dioxide instead (TiO2) but usually they use a mix.
Thank you! A MUST READ for everyone with lupus... you described it so clearly, simply but with details... I'm so impressed, I try to get this point across sometimes but just don't have the right words to describe it without talking forever (a habit of mine...) A few things to add to the discussion:
-By definition, ALL people with lupus are sun-sensitive. It's actually one of the only scientifically-validated factors in triggering lupus activity. It just expresses itself in different ways for different people, some more obvious than others. A rash is easier to correlate with it, those symptoms the author described are just like mine (plus a more acute version almost exactly 3 hrs later that lasts for 3-5hrs, when I have unstable level of consciousness, feverishness, headache, dizziness, rash... I've pretty well avoided it so I don't remember all of it!
-Improvement of my lupus overall reduced the degree of my sensitivity, and some of the meds (ahem, Plaquenil!) actually protect from the sun to some degree (Plaquenil also has the added bonus of making your eyes so light-sensitive that you avoid the sun anyway because it seems so painfully bright! But wear your UV-protected sunglasses, because you're more susceptible to eye damage...) STILL, if you take to much advantage of your reduced (but still existent!) sensitivity, you'll set yourself back by triggering more flares, and even if they're small each time, they could add up to cause a big one!
-Staying in the shade is NOT the same as staying out of the sun. In terms of physics, the sun is thousands of times brighter in the shade than indoor lighting (except maybe heavy fluorescent office lighting that also flares me up!) It just looks dark because it's next to extremely bright light of full sun. Similarly, there are plenty of uv rays all over the place on a cloudy day (but if it's heavy overcast, say like San Francisco fog or Seattle's rainy season cloud cover, there's less than in shade on sunny days.) Our eyes just work by seeing contrast, not absolute light levels. Basically, you need sun protection everywhere, always, which is why I love this post! I've been procrastinating on buying Sun Guard, but since you mentioned Amazon I'll get it with my Prime account and have it in 2 days :)
Brynn
PS Sorry to hear you're zinc sensitive, because I have several great sunscreen recommendations for natural and lovely forumlations... all zinc based! If you want to avoid the chemical sunscreens, look for ones that use Titanium dioxide instead (TiO2) but usually they use a mix.
Awesome post, Jane! I also use the Neutrogena Ultra Sheer Dry Touch, though I've shifted from using the lotion to mostly using the spray. It is SO much quicker and feels better on my skin. I still use the lotion on my face and neck,though.
I didn't realize I was sun-sensitive, even after being diagnosed, at least not initially. I asked my rheumy about sun protection, and he gave me a flat "yes" with no hesitation. But what really made me realize that I was indeed having issues with the sun was that I noticed I was getting a malar rash every evening. It took me some to time to notice that every afternoon, a bar of sunshine would get through my blinds (we so need curtains for those annoying gaps ont he sides!) and touch my face while I sat at the computer. I hung something over that gap, and my even malar rashes stopped. So I've moved my desk, heh. This realization made me a lot more careful and serious about protecting myself from the sun. I ALWAYS use sunscrren, and I ALWAYS wear a hat. It helps me feel better and isn't such a time-sink now that I use the spray sunscreen.
I think I’ll try the spray! I am not great with sunscreen. I didn’t realize that shade still has so much sun, though I’ve had the 3 day flare thing from light shade. I also didn’t know we are all sun sensitive, though I had wondered about that. I think. 30% get the butterfly rash. Thank you for your comments! Faladora, I read a post of yours to “no one understands” - my sister has recently gone from sort of hostile to not speaking to me, and I think it is because my health is too threatening for her to deal with; I saw your comments about your parents. Really sucks. I really related to your post, very wise.
Thanks Jane!
I saw yours after mine over there, and I thought you said basically what I was trying to say in like 1/8 as many words 
Family can be the toughest part, and a therapist once told me they can get judgmental out of denial… They don’t want you to be sick, they feel some kind of guilt over it, and projection is a powerful coping mechanism. Forces us to bear even more when we’re already broken, but hey, that’s part of why we end up so invincible on the other side
Note: of course it didn’t even feel possible to get to this point of letting this kind of thing roll off me or write it with a smile…
Jane Schuler said:
I think I’ll try the spray! I am not great with sunscreen. I didn’t realize that shade still has so much sun, though I’ve had the 3 day flare thing from light shade. I also didn’t know we are all sun sensitive, though I had wondered about that. I think. 30% get the butterfly rash. Thank you for your comments! Faladora, I read a post of yours to “no one understands” - my sister has recently gone from sort of hostile to not speaking to me, and I think it is because my health is too threatening for her to deal with; I saw your comments about your parents. Really sucks. I really related to your post, very wise.
Coolibar sells very effective shirts, jackets, etc. that are SPF 50. I bought a couple online in April. Wore them all summer (even in the car) and my skin was well-protected. They wash well. Not cheap, but much cheaper than a flare!!!
Thanks for the info! I’ve gotten more careful sinceI noticed how much sun makes my arms itch.
Thoughtful discussion, Jane. Thank you!