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It might be confusing if your skin looks or feels sunburned when you haven’t spent any time in the sun. However, this is a familiar experience for some people living with lupus. As one member explained, “My whole chest and back look like I’ve been sunburned. But I can’t be sunburned because I was home all day yesterday.”
Lupus can affect any part of the body, including the skin. People with lupus often experience a variety of changes in their skin, including skin rashes that look like sunburn. It doesn’t help that some people with lupus are also extra sensitive to the sun, making their skin even more vulnerable to sunburn.
If you’ve been diagnosed with lupus and your skin looks or feels like it’s burning even though you haven’t been in the sun, a few things that could be going on. In this article, we discuss reasons why this symptom may occur and some ways you can manage it.
MyLupusTeam members sometimes talk about feeling like their skin is sunburned when they know it isn’t. One member said, “Even though I haven’t been, I feel like I’ve been out in the sun for days, and my face and head feel like they have the worst sunburn in history. It really hurts!”
The sunburn sensation can occur in different parts of the body. Another member described their rash: “Today the back of my legs, around my armpits, and the back of my arms got really red, and it burned like a sunburn.”
For some people, this sunburn sensation can also come along with other symptoms of a lupus flare-up. As one member put it, “The burning for me is not that bad. It only happens occasionally, but when it does, I get sick with a fever and get really fatigued.”
If you are experiencing a sunburnlike sensation, it may be tied to lupus. However, it’s important to make sure that it’s not actually a sunburn.
Figuring out whether or not you have a sunburn when you’ve been diagnosed with lupus can be difficult. Some people with lupus are photosensitive — sensitive to the sun’s ultraviolet (UV) rays — so their skin burns more easily than others’ does. You might be sunburned even if you were outside for just a few minutes. UV exposure can also come from indoor artificial lighting, so you don’t have to be outside for your skin to be exposed to it. However, if the sensation occurs suddenly during a time when you know you weren’t exposed to light (like in the middle of the night), it may be a lupus symptom.
Both sunburn and lupus rashes can cause inflammation, itchiness, discoloration, and pain. But sunburn is more likely to be warm to the touch and can cause blisters, unlike lupus rashes (except in bullous systemic lupus, a rare type of lupus rash). Some lupus rashes can feel bumpy or scaly — symptoms that aren’t associated with sunburn.
It’s important to keep track of all your symptoms and talk to your healthcare provider to figure out what’s going on with your skin.
If you’ve been diagnosed with lupus, a number of things could be causing your sunburnlike rash.
The malar rash, also known as a butterfly rash, usually shows up across both cheeks and the bridge of the nose, roughly in the shape of a butterfly. The discoloration may look similar to sunburn, and it may appear after you are exposed to the sun, even if you’re not sunburned. A malar rash can also cause burning or itchiness, which may feel similar to sunburn.
These rashes can be difficult to distinguish from sunburn. If you have a discolored rash on your cheeks and nose, talk to your healthcare provider to determine the cause.
Up to half of people diagnosed with lupus will experience photosensitivity over the course of their lives. They may experience a wide variety of symptoms, including fever, tiredness, or joint pain. A rash that appears similar to sunburn is also one of these symptoms.
This can be confusing since people with photosensitivity may sunburn easily. One MyLupusTeam member explained it like this: “My main lupus symptom is photosensitivity. My dermatologist recommended I wear sunscreen in the office even when I’m away from the windows. I can get a rash from the indoor lights alone.”
Cutaneous lupus erythematosus (CLE) — lupus of the skin — may cause a rash that burns or itches, which may feel similar to sunburn. This type of rash can show up on areas of your skin typically exposed to the sun, such as your arms, legs, and face, which could make it difficult to differentiate from sunburn.
One major difference is that cutaneous lupus rashes are often thick and scaly. So while this rash may feel like sunburn and appear in similar areas of the body, the rash itself will likely look different.
People with autoimmune diseases like lupus may be more prone to overheating than people who don’t have the condition. Note that this can occur alongside photosensitivity, but it doesn’t have to. Some people with lupus overheat even when they exert themselves indoors or when they’re warm from being exposed to UV rays.
People with lupus often have more nitric oxide in their body. When stimulated, it can cause blood vessels to open, leading to flushed, hot skin. If this is causing your rash, the sunburnlike feeling will usually go away after you cool down.
People with lupus almost always experience joint pain at some point. Because lupus causes inflammation, some people develop arthritis. This can cause the joints to be stiff, tender, and warm. This warm sensation may lead you to think you are sunburned.
However, lupus arthritis typically affects your fingers, toes, wrists, ankles, knees, and elbows. If you notice this warm feeling occurs around these areas, the cause may be related to joint problems, rather than sunburn.
There are a few things you can do if your skin feels sunburned. It may take some trial and error to figure out the combination of treatments that works the best for you.
If you’re constantly or regularly feeling sunburned or if the symptom is new, then your current treatment plan may not be successfully managing your lupus. Talk to your rheumatologist or other healthcare provider to find out what your treatment options are and what you might want to try next. When you get your overall lupus symptoms under control, the feelings of being sunburned might go away.
When you feel sunburned but you know you aren’t, take some time to write down the circumstances that may contribute to the symptom. You might note when the symptoms started, what you ate, what you did in the days or hours prior, what you were wearing, and more. All of this can help you figure out what is triggering the feeling that you are sunburned. Once you know what causes it, you can avoid those things in the future.
If overheating seems to make you feel sunburned, avoid getting too hot. Wear light, loose-but-protective clothing, cover your face with a hat, keep a portable fan and a spray bottle with you anytime you’re outside, and stay in the shade. You may also want to bathe or shower in cool water and keep an iced water bottle with you all the time.
If UV light is a trigger for you, there are a few ways you can protect yourself:
On MyLupusTeam — the social network for people with lupus and their loved ones — people come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Do you experience sunburnlike sensations caused by lupus? How do you manage these symptoms? Share your experience in the comments below, or start a conversation by posting on your Activities page.
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