hi taze:)you sound like me.
I used to lounge on all the beaches in Florida,
as a young adult,throwing caution to the wind.
no can do!
I now live in the desert..you absolutely,not only take the neccessary precautions,sunscreen,etc..but limit your time in the sun ,period. I even use an umbrella now.
but,it;s not just the UV from the sun,but the heat as well..so please be careful,and try and stay cool,and shaded..best wishes,edie
yeah..I love that electric bill in the summers too:)

Cindy, I live in Birmingham, AL and the humidity can be terrible along with the high temps. The sun seems to drain me of energy more than anything and since the type of lupus I have (tumid) only affects the skin, I break out in a rash, hives and itch terribly. Most on my forearms and they even ache. I will break out in other places that haven't seen the sun in about 12 years. Living only 4 hours from the Gulf Coast was great growing up and having close relatives that lived in Destin/Ft. Walton. I love that beautiful blue water and sparkling white sand.
Do you take Vitamin D? I take caltrate +D twice a day and just took 12 Vitamin D tablets over the last 12 week. Mine was pretty low in January when I had a physical.
Maybe you and your hubby could have a "romantic in-door picnic" and pretend you're outside....wish I had some better ideas.
I do have a sunporch on my house and I sit out there quite a bit and read. I only get late afternoon sun so its pleasant most of the day. I had to have a room a/c installed last summer and it helped a lot.
Maybe if you got out just about sunset with a hat and sunscreen at least you would be getting some fresh air.
I hope you will feel better soon and enjoy the rest of the week-end. I'll be thinking of you.
Hugs.....Virginia

Yes, unfortunately it is the heat as well. I'm really down about that. I was born in Hawaii and spent 11 tears in Tucson. I'm so with you taze. You just can't even get hot (there's a REASON not to have sex!) HA! I'm going to try to get a spray tan this year. I know they make you yellow but maybe it's better than white.

thanks everyone for your support ,so is it normal to get sick 4days after being in the sun?Cindy

It`s not just the sun, its the heat and humidity too! My eyes are very sensitive to sunlight as well.The meds I am on has helped to contribute to that problem. I stay inside in A.C. in the summer, wear sunglasses almost year round. I have thrown caustion to the wind, and suffered greatly afterwards. No, not right away, with a few days. Everyone is different....some may feel it within an hour, others, days later.
Take Care,
Sylvie

I can't offer any fantastic suggestions or give you an answer to the questions, but I can say I'm with you and understand the difficulty you're going through with it. I also love the sun, I live on the Gulf Coast now and would be at the beach every day if I could. I used to live in South America where it's constantly sunny and I never had any problems then. I just feel happy when I feel the sun on my skin, and I've always had a pretty reddish color tan (thanks to a few native American ancestors) when I spend time in the sun. But like just the other day I took my kids to have a little picnic outside, and we only spent maybe 15 minutes out, and I itched terribly all night everything that was exposed to the sun and got small hard bumps all over my skin. And I do usually get sick when I'm exposed to much humidity as well, which makes going outside a challenge for me. Right now I'm continuing in denial and will still do what I can outdoors (taking reasonable precautions with sun protection), because my current feeling is that I have to enjoy the times I feel good and make the best of those. Perhaps at some point my feelings will change again, but I've been living cautiously for several years now for fear of getting sick and I can't live that way. I'm sure I don't get as sick as some others here, which makes this decision possible, but right now I'll take the downs with the ups over having a mediocre existence.

For me the heat makes me very tired and sick to my stomach, the sun brings on fatigue and lots if joint pain, also have a burning feeling in my skin. My symptoms usually come on right after being in the sun, and will last a day or two depending how long I was in the sun. Yesterday I took my kids out to the park after 4 like they tell you to do, by the time we left at 7 my joints hurt and had swelling in my hands, also I get this red glaring thing that happens right below my cuticles and my hands get red except where my joints are. Those are the things that happen to me in the sun.

i think im like u but cant figure it out yet either... i go in the sun and nothing happens right away... but the next day ill be exhausted! and feeling like crap

Hi Tazesmom..

It takes me two days before my flare hits after a dose of sun....

First day after Im fine, second day alright'ish, third day the Mask is in full swing, fatigue etc.....

Been journalling for years and have really noticed the pattern....

So it may be possible your have a late reaction...??

Wish you well n hugs.... S

Thanks everyone,i think it would be a good idea for me to journal but when I feel crappy thats the first thing I ignore so I need to try harder,it is interesting my husband and I have been talking about so many times I was really sick and we didn't no why and now it is starting to make since,it would have been nice if for one thing my docs. would have told me about the sun and since it takes three or four days before I get sick and I don't get a rash that I never even considered the sun was making me sick,but since i would go to the doc.appt.really tan you think they might have said something,it has just since I started reading on here and then researching on my own that I started figuring it out,thanks again for all your help,Cindy