Living With Lupus: Allergic to the Sun

Photo on 4-8-13 at 3.04 PM #3As late spring slides into mid- to late summer weather this week here in Connecticut, I am beginning to be blinded by that bright light of revelation: The sun is still not your friend. With temperatures in the high 80s and the bright, sunny days an appealing alternative to the dreary, dark and wet days of last week, I can’t help but want to spend time outside. It’s a perfect time to do yoga in nature, take the cat for a walk in the yard and hike the trails. Yet while I am generating much-needed vitamin D with my 15+ minutes of unprotected exposure to the sun, soaking up its rays of light is also stirring other processes in my body that are decidedly not as positive. In essence, I am allergic to the sun.

While I had lived many years with frequent and relentless infections, extreme fatigue and joint pain and stiffness, one of the first symptoms that really alerted me that my health was morphing yet again was the sudden appearance of skin rashes. Exposed skin would suddenly break out into unattractive red, raised bumps on my face that would disappear within hours, and years later, spiderweb-like patterns would stretch across my neck, trunk and limbs. Over time, I recognized that the rash was triggered by sunlight and that fluorescent lights in stores or doctor’s offices could trigger similarly unsavory effects, such as migraines and issues with my central nervous system (CNS) as well.

Abnormal light sensitivity, or photosensitivity, is a major feature of the autoimmune disease lupus. The American College of Rheumatology loosely defines photosensitivity as “a skin rash as a result of unusual reaction to sunlight.” It can also cause skin lupus lesions, or sores.

It wasn’t until a few months ago that my rheumatologist, Dr. Christopher Manning of Southington, told me the seriousness of photosensitivity. “You may not notice anything physically. There may not even be a rash or episode,” he said. “But the sun is triggering an autoimmune response in your body each and every time you have direct exposure.”

IMG_0067On the Lupus Foundation of America (LFA) site, a current theory posits that UV light causes skin cells to activate certain proteins on the surface, which may then be the target of antibodies which attach to them. These antibodies may attract white bloods to errantly attack the skin cells, causing inflammation that leads to a rash. Additionally, excess amounts of substancenitric oxideis, which promotes inflammation, might be made in the skin of people with lupus after sun exposure, resulting in increased redness and inflammation.

According to the LFA, sunlight can trigger flares of internal lupus disease, like joint pains and fatigue.

UVB rays are thought to be the most important cause of lupus-related skin disease, but exposure can come from other sources. Photosensitivity has also been reported from fluorescent tube lights and from photocopiers. Skin care products such as cosmetics, lotions and perfumes may cause additional sun sensitivity.  Many medications can increase photosensitivity as well.

Likewise, paroxysmal dyskinesia, a form of dystonia, can be triggered by light (photic) stimulation and attacks worsened by temperature, including extreme heat. It’s a condition I developed after years of living with autoimmune disease and is thought to be associated. It can cause symptoms similar to a migraine aura, jerk and, involuntary muscle movements, and attacks severe enough to make me fall.

A trip to Sam’s Club with its ubiquitous fluorescent lights has literally brought me helplessly to my knees or worse more than dozen of times in the last three years because of the lights. My muscles tremble and contort uncontrollably, and my legs turn to jelly. Most doctors’ offices trigger at least a niggling headache, but I’ve also had my limbs completely lock up or my entire body grow limp to the point where I was unable to respond to stimuli for 15 minutes to a half hour, though I was able to hear everything going on. A visit to the optometrist, with super bright lights shined right into the eyes, are guaranteed to cause migraine-like symptoms.

Yesterday, as a rash spread across my neck and my CNS started to go haywire, I was also reminded that windows don’t fully protect one from the sun’s rays They block UVB, but not UVA rays. While I’m not one for lying out in the sun for several hours, I do enjoy long hikes in the summer and trips to the ocean on the most humid of days. I envisioned the rest of my days living in a dark and cloudy to low-light bubble. Then I shook off that ridiculous notion and thought of how I could best adapt.

For protection against ultraviolet light, it is recommended to avoid mid-day sun and to use sunscreen that especially protects against UVB rays, which probably is the most important cause of lupus-related skin disease. Using sunscreens with sun protection factor (SPF) of 30 and higher (above 50 is superfluous) is recommended, said Manning, and should be applied liberally and continuously.

You can even find sun-protective clothing that carry UPF ratings. Dr. David Leffell, a professor of dermatology at Yale University, told ABC News that UPF clothing should be replaced every year or two. “The protection doesn’t last forever, and you don’t want to take things out of storage every summer and assume that you’re being protected,” he said.

Photo on 5-31-13 at 4.02 PMSo I have learned to embrace the sunglasses and sunhat, as well as the tightly woven, yet lightweight clothing that covers my limbs. Too much sunlight had always drained me anyway, and living in New England, keeping covered up while traipsing through the woods is always a smart idea to keep the ticks at bay.

Fluorescent tubes can be fitted with acrylic shields, which eliminate UVB emission. Photocopiers should be used with the top cover down. UV-blocking films can be installed on windows, or you can do what I do—whenever able just step away from the direct light of the sun.


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