Hi Jamms.
I understand your frustration. Going in the sun brings on swelling & red rash to my arms & legs. About 7 & 1/2 years ago I had the worse flare. My entire body become so swollen that it hurt & I looked like the marshmallow man from ghostbusters! Lol. 🙃 I already am COVERED in stretch marks from the intensely insane & quick weight gain I experienced when I first was diagnosed & hospitalized in 2006. I gained 80-90lbs. in 4-6 weeks & I’m 5’1.
Needless to say my stretch marks are everywhere , w/stretch marks on top of stretch marks & they became full of fluid as my body became more swollen/inflamed. My stomach, arms, & legs were so swollen that any friction or slight nick or cut created open oozing wounds. 🤢 (So gross I know)
But this is how....
I was diagnosed w/vasculitis & cellulitis. The only reason why they were able to get me that diagnosis is because they did a biopsy while the rash, swelling, & such were occurring. I would have never been diagnosed w/o the biopsy at the time of the all this horrible this coming to a head in front of all the specialist in the hospital. I too had the full heart work up, lung, vascular, kidney. I mean they did I all & continue to check them all when needed, as I’ve been living w/Lupus/auto immune/connective tissue disease (whatever name the doc decides to call it this year🥴), for 15 years. I’ve lost a lot & it hasn’t been easy, but if I can help anyone who is going through a difficult time, then it makes me happy.
I’m so sorry that you are having to deal w/this. There is nothing more frustrating than not having answers &/or thinking you’re crazy.🤪 FYI... You're not crazy!😉 My best advise is pretty much the same as the others. Try to work earlier in the morning or late in the afternoon like as the sun starts going down. Always wear spf 70+ or higher sunscreen, wide brim hat, & clothes that cover up your most vulnerable areas. There are several places that sell clothing w/spf built in. I know I’ve bought a couple of light weight cardigans from QVC. And finally & probably most important, listen to your body & be an advocate for yourself. Doctors don’t always know the answers. That’s why it’s called “practicing medicine” and they aren’t called “masters of medicine.” Lol 😁
One day at a time & give yourself grace! We all really need to learn to do that more. Please reach out to me if you’d like. I’m not sure exactly where or how to communicate on this site. I’m sure I can figure it out,. Please take care!💜Kel

My first symptom was the swelling in the fingers and arms from the sun as well. It stopped for a while but now if im out in the sun my face swells first in the shape of the butterfly rash, my fingers and arms but only in certain spots, once it goes down its just painful, i havent found anything to help it though, not even sunscreen. I now wear cardigans or jackets and sweaters even in the summer just to cover my arms and i wear gloves when gardening. Let me know if you find anything that helps im sorry that u have to to through that. I hope u feel better soon and can find an answer

I used to get extensive swelling from sun exposure with my Lupus. I found out that I also have Sjogren's Syndrome, another auto-immune disease. Sjogren's Syndrome causes your body's white blood cells to attack your moisture producing glands (eyes, nose, mouth and skin), thus causing swelling as well. I would definitely get tested for this. I try to stay hydrated at all times and out of the sun. Hope this helps you.

Sun is extremely bad for lupus so stay out of sun wear long sleeves and gloves and hat and sun screen. Sun was what brought on my lupus and I was so swollen that I couldn’t wear shoes or even use my hands for personal care. Plaquenil is a very good drug and I’ve been on it for 31 yrs plus prednisone. But I believe in meds and they have worked for 31 yrs so that I can live a normal life. You will have more damage to your organs than from lupus than from meds. ❤️

I am very photosensitive to the sun and cannot be out in it even with the best of sunscreens. I have to wear long sleeve shirts and long pants year round and be covered head to toe. I also have trouble in the vehicle and have an rx from the dr as we are going to have to get the tint in the front windows darker because of it even through the windows from the sun. I have to avoid the sun at all costs. I am so sorry as I know what it is like and it is a different way of life but better for me all the way around or I get very sick if I am exposed to the sun, which is now my enemy. Hugs and prayers.