Is everyone with lupus sun-sensitive? How do you go outside with your kids/parks/beaches/vacations with lupus?
Those who are sun-sensitive, what reactions do you have and how long do they take to present?
No sun for me, way too sensitive. I wear long sleeve shirts and a wide brimmed hat. Even with that, I pretty much stay in the shade or indoors.
My skin burns and will start to rash. I can do a little sun, but not extended time.
I always have some shade of a butterfly rash. When I’m not feeling well it does it brighter. Sometimes it even feels like it’s hot. Thankfully Methotrexate has helped quite a bit with this as well as my sun issues. I was able to go to the beach for 1 day this summer. 😊 And only ended up with a rash on my shoulder which is a major improvement. I myself have to use all the precautions such as spf 70, I wear a tank top & shorts not a bathing suit, we take a pop up tent, hats, and I always carry an umbrella with me if I know I’m gonna be in the sun for more than 5mins. Sometimes I get a rash from the sun through my clothes, the sun is really not my friend. The umbrella used to embarrass me. Like at festivals or my sons football games but eventually I realized if it stops me from getting a rash, migraine, feeling nauseous and like my skin is all prickly then it’s totally worth people looking at me like I’m a Diva.
Anyway, my point is there are ways around the issues to try to enjoy at least some out door activities. You may just have to choose which ones. I do.. Too much sun is always a bad thing for me, instant trigger. But you will figure out what works for you and how long you can be in the sun before you start to feel bad. Try the umbrella, I swear by it. Got one in all of our cars.
I am NOT sun sensitive (thank goodness). I like long walk and mild hiking. Being out in the sun does not kick up symptoms for me - I actually feel better. With that being said, I do burn easy, but I am really fair skinned - LOL. Lot's of sunscreen here. Another scenario of each person being different.
I get very sick and have a lot of pain from being outside in the sun for too long. I'll feel like I have the flu and sometimes I'll feel like my kidneys are shutting down. also my eyes are inanely sensitive to the sun, esp underneath and around them and I'll get severe burning and pain.
Also, fluorescent lights have the same effect on people with lupus as the sun does, so my roommates and I dont really use the lights that the school provides.
As im writing this, the room im in right now is actually lite by colored Christmas lights lol.
But I *love* going outside and being in nature, but ive had to reduce how often I go outside and change how I go about it
- I go out at night and enjoy the outdoors at night
- I wear long sleeves a lot ---so ive defiantly been experimenting with trying to find some different covered fashion choices that fit my style and aesthetic
- I apply sunscreen all over esp when it's super sunny (this deff makes a difference) but I try to at least always put it on my face and hands
- I wear sunglasses every time I go outside--- ive actually started a small sunglasses collection so I could have different ones to match whatever im wearing (doing little things like that make the situation more enjoyable, at least for me lol)
- if im going out for a long time, I rest a lot during the days leading up, and I make a hardcore recovery plan for the days following
- When im outside for a long time, I do my best to pay attention to how long im standing in the sun and I always trying to stand in the shade when I can, my friends will also pay attention and remind me when ive been out of the shade too long, which is super helpful
- I take a vitamin called ***Heliocare*** which was suggested to me by my dermatologist, it's supposed to help reduce photosensitivity and I feel like it's made some difference, im not cured, but it's better.
hopefully some of that is helpful! praying for you!! :)