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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I Am Struggling With The Photosensitivity Aspect Of My Lupus And Being An Outdoorsy Person.

A MyLupusTeam Member asked a question πŸ’­
Reno, NV

I was diagnosed a few months ago and have always enjoyed hiking and camping or laying out in the park. Is there anyone still enjoying these activities? What do you do to prevent a flare? I have been testing the waters with going outside but am still nervous bc I got really sick a few weeks ago after going outside for too long.

March 27, 2023
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A MyLupusTeam Member

I call myself a vampire now. Have allergies to most sunscreens and if I cover up I overheat and become physically ill. So I wait till the sun goes down to take a walk and shop at dusk. I also do a couple of hours a day cleaning at a community kindy who allow me to come in at 3am so I can be home by 6am. Queensland Australia has putrid summer heat and humidity. I find the humidity without the sun is just as bad. But very lucky these days as we have air con. So I pretty much stay inside all day and come out at night πŸ§›β€β™€οΈπŸ˜
I was very much an outdoor person before but have had to come to accept for me it’s not worth it.
I’m saying that you could be different and the advice from all other warriors is certainly worth a try.
Eventually you find out what does and does not work for you. Good luck.
I feel your pain.πŸ˜¬πŸ’œ

March 27, 2023
A MyLupusTeam Member

I also was an outdoor person..I can still camp, but I only camp late Spring/early summer. I stay inside as much as possible between 10am and 5 pm.
I can't hike anymore, but that's breathing/stamina related.
I mostly just go for walks around my neighborhood around 7am..and then (sigh) I stick to light yard work or hanging out on my covered porch.

March 27, 2023 (edited)
A MyLupusTeam Member

We need a UV protection factor of greater than 55 to cover us entirely, as regular clothing doesn't adequately protect us. Sunscreen, SPF clothing, and SPF hats/umbrellas are what I use whenever outside if it's not dark. If you want to check out my story, I've written more about this. It's a hassle, but you can still enjoy the outdoors!

March 27, 2023
A MyLupusTeam Member

It is all about timing. I have a convertible. Do I go out and use it from 11-4? No. But I do enjoy early morning rides in the park or early evening rides. Too much sun is a problem. But no sun is a problem too. Timing is important. Can you walk outside during the day? Of course, I do. But not in the full sunlight and for a long period of time. Talk to your doctor about this. Fear is not good. No one wants you to be in a jail type situration.

March 27, 2023
A MyLupusTeam Member

Yes so right. Sit outside for short time and sick as a dog for god knows how long and more repercussions than ever before like you said. We wouldn’t be much better in colder climates either I believe. It has other challenges. Hang in there lovely.😘

March 28, 2023

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