I've wondered about this too. I love the sun and so far I always feel better when I'm out in it...

Let me tell you my beach story. The first day out, I slathered in factor 70 sunblock - Zinc and titanium oxide. I was out for 2 hours in the morning. Went in and took a shower. Dressed to go eat. Put my clothes on and applied sunblock to my arms and face. Forgot my neck and chest. The pizza place we went to had picnic tables outside. So we sat in the sun and enjoyed a really good pizza. I got home and my neck and chest started itching like crazy. Had a rash all over the exposed skin that I did nt sunblock. It was a problem for the rest of the week. I was OK except for that. Just think if I had neglected to cover my whole body. Luckily for me, I have only once had a systemic sun reaction. And I did not enjoy being covered with a rash, feeling sick, and being so tired for a couple of weeks.
Sun exposure can cause a chemical reaction that can damage your organs. So take care.
When I was first diagnosed, I went to the rheumy with a truck drivers tan. You know, the left arm darker than the right! LOL. I dont lay out. Never have. I feel too bad when I do. But she was upset about little tan on my arms. Seems she had a Lupus patient that went to the beach, had stopped her meds (felt good and didnt think she needed them) and layed out in the sun for a week. She was in her 20s and was in the hospital fighting for her life.
It can be bad, so take care.
Mary Ann

Sigh. :-( Thanks, Mary Ann. I guess I need to hear this...

crowderg..I've never heard this before! I also like the outdoors when I'm feeling good! ... I know that my Vit D level was very very low.... I take 5000 mg per day... the sun gives us Vit D.. sunscreen stops the Vitamin D... such conflicting info!

Hey fellow sun worshippers, I should say I used to be. I too, get itchy rashes if I'm out in the sun too long. I use aveeno sunscreen 30 spf on my body and 85 on my hands and feet which are affected the most. My rhuemmy told me right from the start to stay out of the sun, she gives me shit if she sees any kind of tan on my skin. We are alot like vampires, we can only come out when the sun is low. Terry

My rheumy gives me shit for everything! I'm in the sun too much, I drink too much...blah blah blah. I will say though...i'm getting better about applying sunscreen on a more regular basis. MY doc explained it like this...with autoimmune disorders, it's the breakdown of the cells when exposed to the uv rays that causes our bodies immune system to go into overdrive. This is why a lot of folks flare after sun exposure. Nevermind the photosensitivity and rashes...but, that's why we get the rashes...body's reaction to the cellular breakdown.

I use Aveeno spray for daily use and sport when I go to the lake or pool.

My rheumy gets on my case about not using sunscreen, and I suppose I probably should listen, but I too feel great when I get some sun, as long as I don't get too much. I go out almost every day with my kids and if I can't get out because of the rain or whatever, I start to feel worse. Sometimes I get itchy from too much sun, but I have never gotten a rash from it. I think that it is worse for some than for others just like all the stupid symptoms of this disease. If getting some sun makes you feel better, then I say go for it, just be careful about it.
-Kate
p.s. I hate sunscreen!

When i was first dxed with Dermatomyositis my dermatologist told me to avoid the sun at all cost, including the sun coming in my windows and floresence(sp?)lights! I am an avid outdoors person, and we have a builtin pool, so this at times feels like punishment. I can tell if I'm getting sun, just by the pain in area exposed. I wear Neutragina's 100% spray on, as dr advised. I like that it's spray on (no rubbing! ), and that it is very lite.

I get a flare up if I go in the sun ,I also get sores blisters that pop and kind look like what a cigarette burn would look like ,not nice to look at .I stay out completly now !

Sun has to come second to you, and your health with MCTD. My hands only got sun when I drove and had systemic reaction. It's not worth it. Do what your rhumey says!!

Recently diagnosed and am devastated because we are fulfilling our dream and selling our home and moving to Arizona, our friends have a huge gorgeous pool and we have been trying to do this move for the last 4 years. :-(

I don't know if I am understanding this....From what I am seeing this post is saying no suntan? I think we can be out in the sun as long as we use appropriate measures. For instance, I am not on the photo sensitivity meds yet but have purchased a sunhat with spf factor and a windbreaker. I also use SPF 60 sunscreen. I am assuming that should keep me from burning but maybe others might know better as this is all new to me. Live your dream but realize that you need to take certain steps. Also, from what I have read we only get Vit. D in us during the summer months when the suns raise are more direct. After that we get none!

I think you have to measure what you get. If you go to the pool, wear your sun block and stay in the shade when you are not in the pool. Dont lay out. Work in the yard with block on and clothing to cut our exposure and in the morning and evening. I am a firm believer that daily outdoor activity helps us feel better, but not sunning for a tan or overdoing the exposure. It need not be for more than 20 min and does not have to be in the direct sun. If you go to the beach, use screen, wear a hat and get an umbrella. If you are walking, wear block and a cover up also. Be smart, but live your life. If you find minimal exposure to the sun makes you sick, then you need to stay out of it. Most of us can be outside if we use common sense and do things to minimize most of the exposure.
Mary Ann

Also, the nice thing about Arizona is that it is still warm out even when the sun is going down! I'm from MN. Can I come visit..say in January and February..lol! I must admit I am a tad jealous :).