I get it, Im not supposed to be out in the sun. But my question is WHY? Im not talking for long periods of time, I wear sunscreen, choose when it's too hot for me to be out in it. So what are the effects on my body, internally or externally? Im just frustrated, I hate being in the house or indoors ALL the time. And I got a lecture from a friend today about being out in the sun. So if someone can help clarify this issue, I would appreciate it. Thank you....
I know exactly how you feel. I have major skin reactions when I go out in the sun. It seems to make my already existing skin rashes much worse, for reasons I don't know. I love the summer, and it's a total bummer for me to be inside all the time. Sometimes I give myself a little bit of time to be outside by wearing a wide-brimmed garden hat, a ton of sunscreen and I also recently got a beach umbrella to put in my backyard when I go out. My skin seems to be okay when I do all these things, but I still try not be out for too long.
Hope this helps!
Sun sensitivity just seems to come with the territory when dealing with Lupus. I was diagnosed in February, but I had been sick for at least five years, and could never understand why. For the most part, once my Lupus began to progress and become detectable, I noticed I would get so tired after being in the sun. I never used to wear sunscreen, as I long for that golden complexion that comes from sunbathing. But once I put it all together, I realized I had to protect myself. Last summer, I had a barbecue, and was out in the sun the whole day, no sunscreen.The next day I was sick with Bronchitis, and couldn't move from my couch for the rest of the summer. Now, even though I use a sunscreen with an SPF50, I still feel affected. I go out with sunglasses and an umbrella, and try to go out at night. It really sucks to have to hide from the sun, but it's the safest way to go, because even when I protect myself, I still find that my body aches like crazy after the sun, and the malar rash on my cheeks gets a lot worse after the sun. I have permanent scars on my face from the sun, and I had no idea this was the cause until I saw my Rheumatologist. I have also read that sun exposure can cause organ issues to flare up in people with Lupus. So to avoid all of this, I'd just rather stay in when I can, and cover up when I can't. The sun affects people with Lupus in different ways. Sometimes the medications we take can make it worse. On July 4th, my skin felt like it was on fire because I walked two blocks without my umbrella. So it's better to be safe than sorry. I use the Lupus Foundation's website to learn more about the disease www.lupus.org. I find their info to be helpful...
The sun is killing me. I haven’t had this bad of a flare since the middle of march. I am in so much pain. My lungs are killing me, my mouth has several very painful sores, my back pops everytime I take a breath, my legs don’t want to do right… I woke up this morning And had to force myself out of bed. I was so stiff I could hardly push myself up.
All I'm going to clarify is that I feel the same way and I know the consequences and accept them but will not stop the hiking that I love or the sporting events I attend to support my family. I have cortisone cream in my purse at all times and use it when I see a possible flair up and YES, I get really tired when I've been in the sun but my family understands that I need a nap if I've been out. I'm with you - we gotta live and have some fun!
I agree. You do have to have some fun in your life! I go out in the sun with my kids as much as I can. But I definitely don't over do it. I make sure to have my sunscreen in my bag, and my umbrella handy. I love the sun, but I no I'm no good to my family if I'm sick all day. I plan to go to Jamaica in December, and I will have fun in and out of the sun, with my sunscreen and my umbrella, and a floppy beach hat :) But I used to not protect myself at all, and although I'm 31, my mom had to nudge me to use my umbrella at first. But I realize that sun safety is important for survival.
rashgirl said:
All I'm going to clarify is that I feel the same way and I know the consequences and accept them but will not stop the hiking that I love or the sporting events I attend to support my family. I have cortisone cream in my purse at all times and use it when I see a possible flair up and YES, I get really tired when I've been in the sun but my family understands that I need a nap if I've been out. I'm with you - we gotta live and have some fun!
Hi Tray/ Ladies,
Those who still love to get out just be very careful because the sun can quickly put you in what sunshine is suffering..bless her.
I've got DLE and to go out in the shade for just 10mins and i mean covered like yourself, straight away a flare forms or itching and the more you irritate your skin the worse it will get.
I highly recommend like JC that the link Ann added you really look at because it describes the issues....regarding Lupus we can help it in various ways but trying to still carry on as normal your putting yourselves in risks of flares.
From what I’ve read, a “normal” body deals with sun damage by enlisting the immune system to flush away the toxins that cause damage. For someone with lupus, this action of triggering the immune system sends it into hyperdrive and, as we know, our immune system isn’t really on our team. This causes flares.
Not exactly a scientific explanation, lol…
Someone correct me if I’m wrong, but I seem to remember reading that connection somewhere…
Much love…I know it’s terrible to be cooped up inside! I just spent a week-long vacation at the beach and had to spend majority of the time inside.
Thank you for all of your help. SO far I havent had any rashes, feel fine, not too tired. I dont really feel any side affects. But my friend had said that me being out in the sun can trigger a seizure, affect my kidneys, on and on. Im not talking being out for all day, I wear my SPF 50 at least, and cool off in the river. So to maybe clarify, can and will being in the sun trigger some major event in my body?
It could trigger a flare which, in turn, could cause your immune system to attack organs. That would be worst case scenario…
It sounds like you are taking good precautions. Just make sure you continue to use Sunblock that blocks UVA and UVB rays, find shade when you can and maybe invest in a wide brimmed hat, umbrella or cover-up. Just pay attention to how it may affect you. Just because you don’t notice the effects externally doesn’t mean it isn’t doing internal damage.
This paragraph is copied from everydayhealth.com:
How Does Ultraviolet Light Stimulate an Autoimmune Response in Lupus?
One of the functions of a normal immune system is to get rid of old, dying, or defective cells. This normal cell death process is called “apoptosis.” Research shows that when your skin is exposed to ultraviolet light it may cause many of your skin cells to die. These dead cells are powerful stimulators of the immune system. In people with lupus, the process of apoptosis is slowed and the pronged presence of these dead skin cells produces the inflammatory response in your skin that causes a lupus rash. A sunburn can cause massive skin cell death, and in someone with lupus it can trigger the immune system enough to cause inflammation not only in the skin but also in the joints, muscles, and internal organs.
Hope that helps!
Tray said:
Thank you for all of your help. SO far I havent had any rashes, feel fine, not too tired. I dont really feel any side affects. But my friend had said that me being out in the sun can trigger a seizure, affect my kidneys, on and on. Im not talking being out for all day, I wear my SPF 50 at least, and cool off in the river. So to maybe clarify, can and will being in the sun trigger some major event in my body?