Over the past 46 years I have had many conversations with people about lupus and photosensitivity. I have read many articles. Since I joined LWL I have read many posts and comments from people who tell me that they are not photosensitive because
They have systemic lupus rather than some form of cutaneous lupus
They do not experience any type of skin rash when they are exposed to sunlight or other sources of UV.
These posts and comments leave me afraid for these people because
People with systemic lupus can be photosensitive
As the Lupus Foundation of America points out
Flares of internal lupus disease, including joint pains and fatigue, can also be triggered by sunlight.
So if you have systemic lupus and the sun does not give you a rash or cause lesions to appear on your skin, please at least consider that some of your internal symptoms - including your achy joints and your fatigue - are still a response to the invisible UV portion of sunlight.
Please take the steps necessary to protect yourself from UV, even if it does not produce symptoms in your skin.
Plus a lot of medications can increase the photosensitivity. Good reminder for us all now that spring is here.
So far I'm lucky that sunlight doesn't trigger any flares for me. I'm a summer baby and I don't know what'd I do without my sunlight! I still cover up though... sunglasses, hat, and lots of sunscreen.
I noticed a really strong fatigue, headache, body aches and dizziness/confusion reaction to sun exposure over the past summer. I didn’t get particularly much of a rash with each exposure, just constant redness on my face and upper chest, but 2-4 hours after sun exposure I would be miserable and literally passing out.
When I did some more reading to see whether sunlight had systemic effects, I found some really useful info… In summary, UV exposes the very cell components we have antibodies against, providing the trigger for the inflammation to start. Here’s an article that explains it fairly clearly:
It comments on differences between UVA and UVB effects. I think I’m quite sensitive to UVA and less to UVB, which helps explain why UVA-emitting fluorescent bulbs bother me so much! I’m now really careful to avoid fluorescent light (unlike sunlight, which is beautiful, warm, and provides vit D, fluorescent lighting is just a nuisance (though the most energy-efficient.) My computer screen even gets me flared up sometimes!
Since UV is not only triggering symptoms, but making the disease worse, I try really hard to reduce my exposure. I used to be a sun-worshipper in my childhood and teens, but now I’m learning to enjoy the weather from the shade.
I have SLE and I can tell you that sometime a get a rash and sometimes I don't but I ALWAYS get sick with bad joint pain fatigue and I just fell really bad for at least a week depending how long I was out in the sun.
I have SLE and I absolutely LOVE being in the sun during the summertime. I don’t want to be anywhere else except for the pool or the beach. However, I hurts so bad and it is only a pain that I get when I am out in the sun!!! I “tingle” and it takes hours to go away and there is no form of medication that I can take to rid myself of this pain. So, I just have to limit myself to a few hours in the sun and I have to come in immediately when I start to hurt. I wish I could stay out there from sun up to sun down!!! Have a great Sunday!!!
This is a wonderful discussion, I'm glad you started this. I have told you that I didn't think I was photosensitive, I've never gotten a rash that I know of. It does affect me internally though, it brings such overwhelming fatigue that I have to go crash. My lupus symptoms increased in spring of 2011 when I went to a tanning bed for the first time in my life. I started tanning before my wedding and our Carribean honeymoon cruise. The first full day at sea, we spent by the pool soaking up the sun. I used UV protection, and spent time in the shade as well. At the end of the day we went to our cabin to get ready for dinner, and we slept for 3 solid hours and slept through dinner. My husband was diagnosed with diabetes after we got home, and it took me another year before my diagnosis. Subsequently, I went through my change at the same time. I didn't have the night sweats like my sister describes to me, nor did I have the intense mood swings, to tell the truth, I didn't even know I had gone thru my change already?!
Last summer was the worst for me, I worked in a warehouse and the heat was just unbearable. I would come home from work, and take a nap in the air conditioning and then my body would lock up on me, and I was so stiff and sore I could barely move.
I know that I have to protect myself better, and carry an umbrella against the sun this summer and wear a hat.
Great discussion. I don’t get “rashes” from the sun, but my muscles get achey, my arthritis acts up, I feel very tired, have trouble breathing, headaches, bad brain fog, blurry vision for the next few days, malar blush, and livedo reticularis on my legs and upper arms due to sun exposure. I now limit my sun exposure in the summertime. I’m also sensitive to the sun while driving. Wherever the sun is hitting is where my body reacts first. Fluorescent lighting and computer screens bother me, too.
Susan I wouldn’t draw the shades because lack of sunlight could lead to depression or make depression worse. I’d just avoid direct exposure to it. Let the light shine.
susanjs said:
Does that mean exposure to sunlight inside? Do I have to draw all my shades so no sun comes in? Susan
My bedroom has felt magical this winter. I can watch the moon rise out the window and when there is sun (has been a really dark winter) it shines in my window and the cat and I have been taking sun baths in the morning.The sun moves fairly quickly and only shines a bit through other windows in my apartment. AND, I have been having flares this winter that have been just awful - been to doctors and no one can figure out what is wrong (other than the normal crap). Do you suppose it's these sun baths which feel so incredibly wonderful?
That sounds wonderful. I love the moonlight and the sunlight. It lifts my spirit. I used to love being in the sun and feeling it hit my skin and face whether outside or inside. After my diagnosis I learned as much as possible about lupus via the internet and through lupus support groups. Hearing personal accounts from others with lupus helped me to figure out what my triggers and limits are. I started paying attention to what my body was telling me and learned to listen through trial and error. I did notice that when I sit by a window in my home with sunlight directly hitting me it does make my symptoms start acting up (fever, headache, pain), so I try not to let the sun hit my skin. I’d try cutting down on letting the sun hit you directly. If you are going to sit directly in it’s path, then I’d use the same precautions as being outside by wearing sunscreen, a sunhat and long sleeves. Doctors don’t walk in our shoes, so they tend to be puzzled at times by our symptoms. We fellow lupus sufferers walk in your shoes and know what you are going through.
susanjs said:
My bedroom has felt magical this winter. I can watch the moon rise out the window and when there is sun (has been a really dark winter) it shines in my window and the cat and I have been taking sun baths in the morning.The sun moves fairly quickly and only shines a bit through other windows in my apartment. AND, I have been having flares this winter that have been just awful - been to doctors and no one can figure out what is wrong (other than the normal crap). Do you suppose it’s these sun baths which feel so incredibly wonderful?
Good morning everyone, my first flare was about 1 and half years ago and I broke out in a rash during the summer but didn't think anything about it until I also started having severe pains in my feet ankles and the joints in my neck and shoulders. I first thought it was just arthritis and took pain pills for it but it did not stop the pain. I then went to my primary Dr. and she did a ANA panel on me and it came back showing elevated levels indicating Lupus. I was referred to a Rhuemy who started me on plaquniel and I was I was receiving steroid shots in my shoulders but that did not stop the pain. He then added Methotraxate and oxycodone and after about a month I began to see some relief from the pain. I started doing my own research about Lupus and I have the type that is triggered by the UV sun rays which makes me ache all over and break out on my face and even my scalp. I now know that I have to wear the highest level of sunblock that I can find and it has to have the helioplex in it to be affective against the sun damage. I also learned that I must wear protective clothing on my face, scalp and my arms always rather it is a sunny day or not. I found a online clothing company that make UV protective clothing and I purchased a face mask, hat, long sleeves shirts and dark protective gargles that go over my regular eye glasses. I also started removing gluten and GMO's from my diet and I put myself on a anti-inflamatory diet. I also learned that our bodies need to be 80% alkaline and 20% acid so make sure that I make my water alkaline by putting a slice of lemon in my water with some stevia and I reduced the amount of acid in my diet also. Lupus is alot of work and we must be our own advocates and do our own research to find out as much about this disease as possible and share what we learn with others. Alot of Dr. sadly do not know that much about the disease as we would like, mainly because there really isn't a medication designed just for Lupus, we are taking a malaria drug in hopes that it will work for our condition, but it only treats the symptoms not the disease itself; therefore there is not a cure for what we have. Sun light is my crytonite it makes me weak and dizzy if i'm out there too long even with all of my sun protection on and I still work every day and it really is tough for me to battle this thing and not let on to my co-workers that I just don't feel well and why I can't join them in their outtings in the sun. I look like a Bank Robber while driving in my car because that is where I get the most sun exposure but I don't care if people stare and wonder what I'm up to, I just laugh and go on with life. My philosphy is to take your meds and go on with living I do not let my illness keep me from doing what ever I want to do, I just find ways to cope with it and just do it.
I am quite sensitive to any light. Not only do I break out, but the pain is intense. Ice packs and my faith in God helps me stay sane. After I put on sunscreen, I cover myself from head to toes. I avoid going out while the sun is out, keep the lights inside my house at a minimum, and use an umbrella on bright sunny days. Indirect sun light affects me as much as fluorescent light. My Dermy warned me about it. He said it can affect as well.
The beauty of it all is that when I cannot enjoy the sun, I can still have my fill on a starry night. =)
When life gives you lemons...or lupus...you make lemonade. And lemonade isn't so bad. It was SO troublesome for me to accept and adapt to my photosensitivity. It is still troublesome to pack myself tight from head to toes everytime I HAVE to get out during the day, but to know I still have options restores my joy.
Hi Ann! I am posting here my reply to your message as requested
Hi Ann! Your hypothesis is not crazy! I have the same experience even before the rashes from sun exposure started to get visible. I usually feel achy and sick and tired even wothout the rashes after exposure and this has been confimed by my rheumy when he warned me of avoiding the sun. It feels like the sun is sucking out every bit of energy in my body. And then the photosensitivity became worse and I now I have been experiencing rashes after exposure on top of the fatigue and achy muscles. >
