You seem highly sensitive, I am not that bad with all the protection on. I find it is more the heat than the actual sun. What are you like if you are in a room that is hot, I get the same way sick even in a hot room.
Sounds like you are doing everything you can. I no if you goggle clothes for sun sensitivity there is clothing you can buy. I have a hat by sun veil that works very well and they have cover ups etc that are light to go over your dress etc and cuts the rays out. other than that I really don't no. gentle hugs and blessings

being in the sun does not work for me either.i sweat and my face swells up
this is a nasty disease
I feel sorry for anyone that had those terrible.flare ups I have them a lot

I too get very sick from getting hot outdoors or being in a hot room. I feel like everything starts moving in slow motion. I feel like I have low blood pressure and low blood sugar when I don't. I have experienced this for many years and I have never heard of anyone else having this problem. I googled it and only found the sun and light to be a problem for people with lupus. I love to exercise and be outdoors. I have greatly curtailed these activities due to the awful effects of getting hot.

I put on sunscreen every 30 minutes and wear hats alot. I also wear pants and wear sleeves if I can, if its to hot I try using umbrella if its acceptable. my husband also bought a an open tent like you would use on a beach for open events. Sunglasses also because I get sun headaches too.

In a room that is hot I get dizzy and I pass out