r/lupus • u/honestly_can_I_not Diagnosed SLE • 2d ago
Advice Is it possible to get re-used to the sun?
Idk if this is the stupidest thing in the world, but is it possible to build up tolerance to the sun?
I used to be such a sunshine child and I know it sounds stupid but when it’s beautiful out and I can’t go out it really hurts my mental health. I just feel like I need the sun. I crave it. But if I go in I get a massive red rash especially malar. It burns and blisters and is the worst.
But is there anyway to grow a tolerance like a tan? Could I be miserable for a could weeks and then work to enjoy outdoors again? I feel like I’m losing my mind indoors and don’t know what to do.
22
u/fourrflowers Diagnosed with UCTD/MCTD 2d ago
I find clothing is the way to go- I wear a UV-proof base layer, sunglasses and a big hat. It's not perfect but it lets me gp outside without horrible symptoms Or being covered in suncream which takes ages and I hate.
8
u/KookyWolverine13 Diagnosed CLE/DLE 2d ago
I'm an avid hiker and this is my go-to. Also winter is easier. Nothing beats long sleeves/pants, a big hat, sun glasses and sunscreen. Lots of sunscreen. I use a Neutrogena spf 50 face stick and spray on body SPF. If I go out without protection I end up super fatigued at best (once I slept for three days because I agreed to a fishing trip with my step dad 😭) and with skin lesions at worst 😵💫
3
u/TeeManyMartoonies Diagnosed SLE 2d ago
What brands do you like? I haaaate how the UV clothing is t breathable. I feel like I’m in a gol’ dang garbage bag and sweaty.
3
u/KookyWolverine13 Diagnosed CLE/DLE 2d ago
I don't wear a ton of UVP clothing and I have some skin allergies (lanolin, latex) and very sensitive skin on top of having SCLE. I stick to athletic brands, sweat wicking fabrics that don't irritate my skin, mostly in dark colors and thick fabrics (easier in winter). My absolute favorites are lululemon, athleta, north face, cotopaxi, REI store brand (i swear by their non wool socks too!), Nike and Underarmor. I probably have some others but I can't think of the brands right now.
11
u/Missing-the-sun Diagnosed SLE 2d ago
Nope. It’s not stupid for wishing it, but it’s definitely not possible. The thing we’re reacting to is UV radiation. Everyone should be limiting their exposure to UV radiation — it is literally destroying the DNA in your skin cells. Hence the cancer risk. Hence the increased immune system crankiness. No amount of tan is actually safe for anyone.
There are, however, protective measures you can take to increase your tolerance for being outdoors. Getting outside when the UV is low; wearing full coverage UPF50+ uv-resistant clothing and accessories like wide brimmed hats, sunglasses, and umbrellas; wearing and frequently reapplying high quality sunscreen; and picking shady locations are good ways to spend time outdoors while still staying safe.
6
u/CheffreyBezos Diagnosed SLE 2d ago
Absolutely. But is it worth it to do that? The sun is damaging your body and an accelerated rate than people who do not have this disease. Even on the nicest day, it is still a major risk. Over time, I have become very sensitive. In high school, I played golf and was outside for hours and hours every single day. Now I can’t be outside in the sun without full gear. I think things like me playing golf outdoors accelerated my disease progression. I am now a vampire.
6
u/AngeliqueRuss Seeking Diagnosis 1d ago
Hi there, I am in a northern latitude (46.78) and I was living in a lower latitude for decades (33 degrees).
The sun doesn’t effect me the same way here at. ALL. I have the same basic sun protection practices here. I am also sensitive to heat but it is often around 70 in warmer months.
You might try traveling north.
11
u/mykesx Diagnosed SLE 2d ago
I’m able to spend 2-3 hours in the sun, with only a ball cap. I am in remission…
I do sometimes get some symptoms, it seems based on the strength of the sun and time outside. If I am affected, I have some fatigue (tiredness that sleep doesn’t solve), and maybe the constant minor joint pain I have is somewhat worse. Not enough to discourage me from going out. I only go outside for a few hours a week.
Oddly, it seems worse for me to spend 3 hours in the shade at dusk than in full sun at midday.
2
u/murmmmmur Seeking Diagnosis 1d ago
Do you know if when you have symptoms or a flareup it means your lupus is damaging your organs? I’m in the diagnosis process and am wondering what’s happening in my body during a flare. I never thought my cyclical misery might be doing organ damage and now I’m quite afraid of my episodes.
2
2
u/hydroflasktotheknee Diagnosed SLE 1d ago
Flare can refer to labs indicating active lupus and/or symptoms of flare but sometimes they don’t line up, it’s a weird thing. When I was first diagnosed my labs were a mess and showing a bad flare and my kidneys were getting damaged but I only had joint pain and felt pretty okay besides that. I didn’t wanna take meds because I felt fine and said I didn’t wanna avoid the sun because it didn’t make me feel worse and I didn’t get any rashes and am a surfer and just outside a lot. My rheum was of course alarmed by this and explained that even if I feel fine, the damage is still happening if the disease is active. Now, 6 years in, my labs have looked like I’m in remission for a few years, but I’ve been feeling sicker and more flare-y than ever for last couple months. So it’s usually aligned with symptoms + abnormal labs but not always for me at least
1
u/murmmmmur Seeking Diagnosis 23h ago
Thank you for sharing. That is so interesting/confusing. I already instinctively avoid the sun and have since high school, but I was also wondering if I need to take that super seriously now. Sounds like triggering a flare can be very bad and always worth avoiding. And that flares can happen even when you’re doing everything right. (How lovely /s) I really appreciate you taking the time to explain your experience.
1
u/hydroflasktotheknee Diagnosed SLE 12h ago
I feel like I should clarify here that even though I didn’t actually feel worse being in the sun, it was still causing damage and triggering lupus activity. I got into remission with medication and being careful in the sun although I’m still not the most compliant and will spend too long outside these days, except now I do feel the effects of too much sun even though I’m in remission technically
-1
u/throwawaymyyhoeaway Diagnosed SLE 2d ago
I miss being in remission.... Enjoy it whilst it lasts :'))) I also relate to the sun not being a huge problem whilst in remission. I remember going to Rome years back and wasn't affected by the hot midday sun at all. Obviously wore lots of sun protection anyway.
6
u/LogicalMouse03 2d ago
Oh I wish. 😫 It’s the most depressing part of all of this for me. I’m able to stay relatively ok as long as I hide from the sun but I’m also a sunshine child and it depresses the hell out of me. Like a lot.
If there is ANY way to be able to go in the sun again, I want to know.
4
u/Indie516 Diagnosed SLE 2d ago
For me, it's only gotten worse with time, actually. Same for one of my uncles.
5
5
u/Sovereigntyheals Seeking Diagnosis 2d ago
I know people who have gone into remission and can enjoy the sun again with precautions. I’m not there yet and I dream to be because I’m miserable without it and the beach in my life. I was a mermaid straight up.
Born and raised in SD and live in LA it’s a lifestyle so I’m doing my best to heal my body.
Not sure when and how much but I pray. 🙏🙏🙏
3
u/oohkt Diagnosed SLE 2d ago
I work outside. I'm a psycho with sunscreen. I wear hats. I try to snag the indoor work or at least somewhere with shade, but it's inevitable.
I know you can build up your heat tolerance easily because people with Lupus stay indoors or in the shade a lot. But I don't know about building up a tolerance when sunlight makes you flare. Interesting question.
3
u/axlinsane 2d ago
Depends were I am in a flare or not, I can handle a lot more uv when my body's calm, but when I'm flaring it only takes a few minutes outside before I have a headache, swollen hands, rash and sweats galore, sucks when it happens when your doing so good then bam sick.
3
u/ChallengeBig5899 Diagnosed SLE 2d ago
I think your question is best answered by a Dr. You can go out and risk it but I don’t advise that at all. And sometimes a medicine you are on (antibiotics?) will enhance an overreaction to the sun. I get hundreds of water blisters even when fully clothed out in the sun. Who needs direct sun anyway- it will damage the skin of even the healthiest amongst us. Good luck and I wish you the best!
2
u/RareAndSaucy Diagnosed SLE 1d ago
They estimate 40-70% of lupus patients to have extra photosensitivity. Some of us more than others, but idk if you can build up a tolerance. I’m definitely not as sensitive as other people, but even a full day on the beach (I know I know) will leave me rashes and joint pain. I’m also a sun worshipper so I totally hear you. I just try to read my body and be thoughtful about my sun exposure.
If i do plan to get in the sun I bring a big t shirt, a cap, lots of sunscreen, water, vitamin water with b vitamins, advil/tylenol, and am conscientious about when I’m going to need a nap and an escape plan. I’ll also try to front load my sun exposure to when the UV isn’t insane (I.e. bike ride in the morning sun).
It’s pretty personal what you’re willing to risk so I hope I don’t get shit on for saying this. It’s not medical advice obviously, it’s human to human experience sharing.
2
u/paralegal444 1d ago
In my experience when I went tanning regularly I would get a bit tired afterwards. Then I would be fine and looked great! When Tanning salons shut down all over my state due to high taxes on them I stopped going. I tried to go back a couple times (didn’t tan for at least 4/5 yrs) and also just go sit outside in the sun for like an hour. WOW… my skin would be so red, and even got broken blood vessels as I am pale. I would be so fatigued I would need to sleep. I mean sleep not a nap… Those were the only symptoms but that’s enough for me to be scared of my once beloved sun and UV rays.. I miss it
2
u/Emotional-Lie1392 Diagnosed SLE 1d ago
Honestly, I use a bronzing sunscreen with the highest spf, and stay under the umbrella as much as possible . I know the sun can reflect as well, but I trick my mind into thinking I have a suntan. It makes me feel great while protecting my skin. The past couple years hasn’t been as much the sun as being able to get moving and actually walk around. That made it really bad to go anywhere. I pulled off a 7 day trip to Mexico with only 2 days down of the seven, going from 3-400 steps a day to 5000. And using head to toe bronzing sunscreen, and a coverup. Then I had to come back to Pa to the 50s. Brr… one more week and I should be in the mid 60s and ready to try starting going for small walks. Good luck to you.♥️
1
u/punkgirlvents Seeking Diagnosis 1d ago
I don’t think there’s a way to build up TOLERANCE, but working with doctors I’ve found ways to make it work. I take allergy pills daily and absolutely lather up with sunscreen. Even then it’s best to wear UV protective long sleeved shirts (they’re still very light and there’s plenty of cute ones at outdoor stores) and hats or at the very least go into the shade every half hour or so
1
u/Tunefultan 17h ago
I avoid the sun as much as I can. I’ve had 17 (to date) early skin cancers removed. Please don’t mess with your skin. We are way more prone to skin damage which lead in my case to skin cancers. I’ve never sat in the sun as it’s always triggered my lupus symptoms -
Most of our meds are uv sensitive too. Mess with the sun and you mess with ending up like me - Frankenstein’s experiment!!!
Sit in the shade and enjoy the nice weather there x
0
55
u/sqplanetarium Diagnosed SLE 2d ago
UV is a lupus trigger because it damages cells, exposing cell guts, which is exactly what our immune systems go nuts over. Unfortunately there’s no way to build up a tolerance, and a tan is not effective protection. Your best bet for enjoying time outside is awesome sunscreen, clothing, etc, and being choosy about timing (early or late in the day when the sun isn’t as strong).