Have you ever felt random bursts of hot sensations on your body, seemingly out of nowhere? If you’re living with lupus, you already know that this autoimmune disease can cause a variety of symptoms. In addition to joint pain, systemic lupus erythematosus (SLE) can cause chest pain, fever, hair loss, lesions, weight loss, swollen lymph nodes, and mouth sores, among other common symptoms.

Skin sensitivity, skin rashes (including the well-known butterfly-shaped malar rashes across the face and the bridge of the nose), and itching over various parts of the body are also symptoms of lupus.

Sometimes, people living with lupus experience hot or burning sensations on their skin, even though they haven’t touched anything warm nor been outside long enough to get a sunburn. Although these sensations aren’t commonly associated with lupus, they can still be caused by the condition. There are a few things you can do to lessen these symptoms.

What Do Hot and Burning Sensations Feel Like?

Not everyone will experience these hot and burning sensations in the same way. One MyLupusTeam member said, “Sometimes, my upper arm will feel really hot like a burning sensation. It’s the same with other parts of my body like my stomach, thighs, or rib area. It’s always just a random spot that feels like it’s burning.”

Some members experience these sensations without other symptoms. One explained, “It happens out of the blue, and it’s very weird and very uncomfortable. When it happens, the rest of my body feels fine.”

Another added that, at least sometimes, they experience burning sensations without any visible skin changes: “Mine feels like a chemical burn that really hurts but doesn’t look different than usual.”

Sometimes, certain activities may cause or increase the sensation. “My skin hurts in places even when I shower … just to touch during washing creates burning pain,” a member shared.

For others, the sensations seem to show up in particular areas, like for the member who said, “It’s usually the area around my joints that gets really warm and starts burning. I get patches of redness that are hot to the touch.”

For others, it’s always the same spot, and the sensation may come and go. “I’ve noticed over the last couple of weeks that I get this ‘hot spot’ just above my right ankle about three to four times a day,” shared one member. “It doesn’t hurt and it’s not swollen. Just a sudden warmth comes on and lasts several minutes. The area is about as big as your fist.”

What Can Cause Hot and Burning Sensations in People With Lupus?

If you experience hot, burning skin sensations like those listed above, following are a few potential causes.

1. Photosensitivity

Some people with lupus have photosensitivity, meaning they’re sensitive to the sun. This complex response may cause different types of symptoms, including a rash that burns, fatigue, fever, or increased joint pain. Research from Johns Hopkins Lupus Center has found that up to 50 percent of people diagnosed with lupus experience photosensitivity at some point.

Scientists don’t understand the exact connection between sunlight and lupus. They do know, however, that many people develop symptoms similar to those of a very bad sunburn. They may experience extreme heat and redness from only a few minutes in the sun. This could be one reason why your skin seems hot and feels like it’s burning.

Note that nonsteroidal anti-inflammatory drugs (NSAIDs) can also cause photosensitivity. If you’re taking any NSAIDs, whether for lupus or another condition, you may need to discontinue them to determine whether they’re causing your photosensitivity and burning sensations. Talk to your doctor before you stop taking any medications to make sure it’s a good choice for your specific situation.

2. Overheating

People living with lupus may also experience overheating in situations where other people don’t. Scientists don’t know exactly why people with lupus overheat, but it may result from high levels of nitric oxide in their bloodstream. This condition can cause blood vessels to dilate (open wider), which can make the skin feel warm and turn red. If you experience hot, burning skin, you may be overheating — even if you haven’t been in warm conditions or exerted yourself.

3. Cutaneous Lupus

Cutaneous lupus affects your skin. You can develop this with SLE or independent of it. Cutaneous lupus can cause rashes and sores on the skin and may cause photosensitivity. Sometimes, these rashes can be hot or feel like they are burning.

4. Joint Pain

Most people with systemic lupus experience joint pain. While this may primarily affect the joints, it can also cause pain and inflammation in tissues around the joints, including the skin. If your hot, burning skin often occurs over your joints, it may be an extension of the effects of lupus in those joints.

5. Peripheral Neuropathy

Some people with lupus experience peripheral neuropathy — nerve damage in their peripheral nervous system. This is the part of the nervous system outside of your brain and spinal cord.

One sign of peripheral neuropathy is burning pain in the affected areas. This sensation may or may not make the area feel like it is hot. Peripheral neuropathy may be a less likely cause of hot and burning skin because it usually comes with other symptoms, like numbness or weakness. However, peripheral neuropathy could still be the reason you experience heat and burning.

Managing Hot and Burning Sensations With Lupus

If you are experiencing hot and burning skin due to lupus, following are some steps you can take to manage the symptom.

Manage Your Lupus Overall

Talk to your health care provider or rheumatology expert about finding a new or better treatment plan for your lupus. If you experience frequent hot and burning skin sensations or if it’s a new symptom, your current medications may not be keeping your lupus under control. It may also mean you’re entering a lupus flare-up, and you may need additional or different lupus treatment to get it under control.

Many treatments and therapies can help you get your immune system, and therefore the hot and burning skin sensations, under control. You may need to try a few before you find one that works well for you.

Stay Cool

If sun exposure or overheating seem to cause or worsen your hot and burning skin sensations, do your best to stay cool or have a way to cool down fast if your skin gets too hot.

Some potentially effective cooling techniques include:

• Staying hydrated
• Wetting your skin with a damp cloth or spray bottle
• Limiting your activity levels
• Bathing in cooler water if baths or showers cause you burning sensations
• Avoiding the sun during the hottest parts of the day
• Avoiding direct sunlight as much as possible, no matter the time of day

Pinpoint Your Triggers

Different people have different triggers for hot and burning skin sensations. One MyLupusTeam member shared some of theirs: “It usually happens in a hot shower or out in the cold weather. It also happens after walking a lot or drinking alcohol.”

If you can figure out what’s causing your skin to feel uncomfortable, you can try to avoid those situations to help you feel better, manage your lupus, and improve your quality of life.

Talk With Others Who Understand

MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, 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 random hot sensations? Share your experience in the comments below, or start a conversation by posting on your Activities page.