Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Our family went to San Francisco this month to see a Red Sox game, of course the day of the game it was their hottest day of the year, I kept pouring water down my shirt and all over my pants and kept as wet and cool as I could, The next day I had sores all over my arms and boy did they itch, they lasted about a week, I was very dehidraded but much to my surprise I have not been sick at all since then. The only problem I have had is that I have been so TIRED, all I want to do is sleep, but can't, I am a pretty busy person, I guess we can vacation and survive it lol
Take good care!
Teisha
I don't mean to bust your butt, but I think it's necessary here for your own protection and safety. I don't know how long you've been diagnosed, but I read your post and was worried.. The comment "I guess we can vacation and servive it lol" shows that you don't truly GET IT.
Being tired IS being sick. It means that you probably had an immune reaction to being out in the sun. Even lupus patients who haven't been reactive to sunlight can BECOME reactive at ANY TIME. What's more worrisome are the INTERNAL symptoms that you may not see such as kidney damage or vasculitis. You won't see a rash from those. And you never know WHEN the damage done will be serious so you can't gamble on this. There's no way to know what will push you over the edge so you have to avoid be serious about avoiding these things. Going out into the sun is like having liver disease and drinking alcohol. Maybe the first drink won't hurt you, but what about the second, the third, the ninth? And you can't tell WHEN you stepped over the line.
For the record, the problem with lupus patients being in the sun is not the HEAT (though heat CAN be part of it), it's the specific type of sun rays that cause the immune reaction. It doesn't matter how cool you keep yourself or how hydrated---those are the same issues as the rest of the world. You still need to wear a hat, sunscreen, and sunprotective clothing if you're going to sit out at a baseball game. And even then, you can still get enough sunlight to make you sick.
So please, stay OUT OF THE SUN even it it means missing family vacations or staying indoors while the rest of the family is out in the sun. That is if you want to be around for the next famliy vacation and the one after that.
Tracy
I have to agree with tracy...I hate to be negative because it sounds like you had a nice time (and Im happy for you! honestly) but you do have to be very careful about being out in the sun or even over doing it in the heat. It sounds like you did have a flare up because you got sores and you are extremely tired. These are signs, as tracy stated of an auto immune response. And, if you do this too often it can trigger a major flare up which you do not want. Trust me on that one...If I were in the same position i probably would have poured water all over myself too and gone because I felt obligated but I would know it was very bad for me and most likely I would suffer in some way, as you are. I cannot tolerate the sun/heat at all. As a matter of fact, I think I may have developed vasculitis from the heat wave here in Los Angeles. My legs and feet are throbbing and burning and even staying in the house, which is what I have been doing has triggered something to trigger inflamation.
Basically, even if we dont feel bad at the time, we have to learn what to avoid because it can affect our future..We can feel good and over do it exercising one day and pay for that for weeks. Next time, try to look at the weather (I have to do this or I will get sick if I go anywhere) and if its going to be hot, make other plans that wont force you to be in the sun.
We are only telling you this because we care about you....
Hugs and feel better (tired wise)
I think you are missing the point. There is no way to know when your "tolerating the sun" becomes "not tolerating the sun." I've seen patients who regularly sunbathe and said the exact same thing, "Oh, I'm okay in the sun, we all have different tolerances" turn around and go into KIDNEY FAILURE after a day at the beach.
When you have lupus, you MUST STAY OUT OF THE SUN. As I said before, while you may not feel sick or have noticiable symptoms, you may be causing INTERNAL DAMAGE--kidney disease, brain plaques, etc. Just because you can't see or don't notice damage, doesn't mean it's not happening to you.
Have any of you discussed this with your rheumies? I'm betting the answer is NO. Because no rheumy worth his//her salt will tell you that it's okay to be out in the sun "as long as you don't show symptoms."
Sun exposure is not a trade off like getting too much activity that you'll be able to make up if you rest for a few days. The sun damage CANNOT BE UNDONE. Some patients get sick at one exposure, some get sick after a dozen. This isn't even like people who choose to smoke cigarettes because they don't think they'll get cancer; the difference is that everyone who smokes does not get cancer. But lupus patients DO SHOW DAMAGE from being out in the sun and it's vital to stay out of it whether it makes you physically sick or not.
Think of it this way, you've got a cup that's got poison, but you're really thirsty so you figure, if I drink just a little, I won't get sick. Except you don't know how much it will take to cross over the line and kill you. The first sip doesn't hurt, so does that mean you're IMMUNE to the poison? Of course not. Maybe it will take 2 sips or drinking the entire glass. So you drink the whole glass because you seem to be okay.
Just because the poison doesn't kill you at that moment doesn't mean it won't tomorrow.
Ladies, this is a really IMPORTANT CONCEPT with this disease. NO SUN EXPOSURE. None. Zilch.
Tracy
I totally disagree with you on this one. No one "deserves" anything. Unfortunately, we give up lots of things for this disease. There are are places where we can way the benefits vs the probably cost, times like when we want to go to a hectic family reunion knowing that we will flare when we get home due to all the activitie.
But the sun is different. Even people who THINK they aren't sun sensitive MAY BE because you can't tell what's going on internally. Sun is one of those things that can cause major flares even in small doses. And since we CANNOT gave the damage done by being in the sun unless we have a noticeable reaction, many lupus patients MISTAKENLY believe that they aren't having a reaction and aren't sun sensitive. Those particular rays from the sun affect our lupus whether we feel it or not so putting lupus patients into the catagory of "non-reactive to sunlight" is medically a mistake. I don't know ANY rheumie would would give the advice you gave, i.e., everyone deserves a vacation so go out in the sun! There is a REASON that every lupus pamphlet and doctor say STAY OUT OF THE SUN.
BTW, on autopsy, 99% of the patients showed kidney damage whereas only 20% showed any signs of the damage while alive. That's the reason the docs DO BIOPSIES of the kidneys and liver: because they CANNOT TELL HOW MUCH DAMAGE THERE IS.
People drink and drive. People smoke cigarettes. People ride motorcycles without helmets, and yes, lupus patients do go out into the sunlight. But is it a good idea? Absolutely not. But each person DOES HAVE THE RIGHT TO PICK HER OWN POISON so to speak. So go out in the sun, have your vacation, but don't delude yourself into thinking that it's just hunky dory because you're in that group that doesn't APPEAR to be reactive to sunlight. With sun exposure, there isn't a matter of "degrees". You can get just as sick from 10 minutes as from 2 hours. But the 2 hours of sunning yourself IS more likely to cause harm. But safe? No way.
This is America, people can do what they want. My point is to make sure that the members of this list are aware of the dangers involved. Your advice is off the mark. Sorry, but I think it needed to be said. We all have to avoid the sun as much as we possibly can and that includes patients who don't have an immediate visibile reaction.
Tracy
The way you come off is very rude. I would appreciate it if you wouldn't attack my posts or judge them the way you do. People on this site are not looking for any kind of ridicule. This is major history with you, and your response to bunny was also rude. We are all adults on this site, and are smart enough to know that the sun can cause flares. That is one of the major aspects of Lupus and it doesn't take an expert to figure that one out. Please don't try and make light of me in a way that would make it seem like I am telling people on this site to go out and get suntans. That was never my intent!! Your right everyone can make their own decisions and I am sure bunny has already been much informed by her own doctor on the risks of the sun.