It might be confusing for your skin to look or feel sunburned when you haven’t spent any time in the sun. However, this is a familiar experience for some people living with lupus.
Lupus is an autoimmune disease, with systemic lupus erythematosus (SLE) being the most common type. The condition can cause a variety of symptoms, including a rash across the nose and cheeks, joint pain, fevers, fatigue, and more.
In addition, some people with lupus experience other rashes, including something that feels like a sunburn but isn’t. The skin may or may not be itchy and sensitive, too.
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. 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.”
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 is mostly annoying. 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.”
Clearly, this feeling can also come along with other symptoms of a lupus flare-up.
For others, though, the sunburn sensation is painful, just like having a bad sunburn would be. “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!” one member explained.
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 sensitive to the sun, so their skin burns more easily than others. You might be sunburned even if you were outside for just a few minutes.
However, if the sensation comes on when you haven’t been outside or appears suddenly during a time when you know you weren’t exposed to light (e.g., in the middle of the night), it’s likely a lupus symptom. Additionally, if it itches a lot or develops bumps or lumps, it’s likely a rash and not a sunburn.
If you’ve been diagnosed with lupus, a number of things could be causing your sunburnlike rash.
The malar rash is also known as a butterfly rash. It usually shows up across both cheeks and the bridge of the nose, so it is roughly butterfly shaped. It can feel hot and may appear after you are exposed to the sun, even if you’re not sunburned.
Some people who live with lupus are particularly sensitive to the sun, or photosensitive. 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, lethargy, or joint pain. A rash that is something like sunburn is also one of these symptoms.
This can be confusing because people with photosensitivity may also sunburn very easily. In fact, some may need to wear sunscreen even when they are inside to avoid all ultraviolet light exposure. 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.”
If you’re taking nonsteroidal anti-inflammatory drugs (NSAIDs) for your lupus symptoms — such as naproxen, ibuprofen (Motrin), and others — they may contribute to photosensitivity. Work with your doctor to determine an underlying cause. You can address it together and try to avoid that sunburned feeling from happening.
Cutaneous lupus erythematosus (CLE) — lupus of the skin — may also cause a rash that feels like a sunburn. One type of CLE, called discoid lupus, is the most likely type of lupus to cause a rash, though other types can, too. Note that most cutaneous lupus rashes are thick and scaly, so they may be less likely to feel like a sunburn.
Discoid lupus lesions can occur on any part of the body, but they are most likely to be found on the head or the ears. Thus, they are most likely to be behind skin that feels sunburned in those places.
People with 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 are warm for other reasons.
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. This can cause pain not only in the joints but in surrounding tissues, including the skin. It can cause hot, discolored areas that might seem like sunburn over or around affected joints.
There are a few things you can do if you feel like you have skin that feels sunburned with lupus. It may take some trial and error to figure out the combination of treatments that works the best for your skin response.
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 rheumatology expert or other health care 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, your feelings of being sunburned might go away, too.
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 write down 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 the sun is a trigger for you, stay out of it as much as possible. Cover your skin when you’re out and wear sunscreen with a high SPF. Try not to get sun exposure between 10 a.m. and 2 p.m., when the sun’s rays will hit you most directly. Anytime you need to be exposed to light that triggers your sunburn reaction, wear sunscreen or clothing that provides sun protection.
On MyLupusTeam — the social network for people with lupus and their loved ones — more than 222,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Are you living with skin that feels sunburned with lupus? How do you manage it? Share your experience in the comments below, or start a conversation by posting on your Activities page.