Some people with lupus experience excessive sweating and frequent overheating, while others say their blood feels like it’s boiling. A full-body burning sensation is a common experience among MyLupusTeam members.
“I feel like I’m literally on fire sometimes,” one member said. Another said, “I’m always hot. I’ll become really hot, and my body will feel hot, but everyone around me is fine.” A third member put it this way: “I try to avoid getting hot. If I do, I feel like I am burning from the inside out!”
Feeling like your body is on fire or that your blood is boiling may be a sign that you’re running a fever or a high temperature. Fever is a common symptom of lupus. Research shows that up to 86 percent of people with systemic lupus erythematosus (SLE), the most common type of lupus, experience fevers.
A high temperature or fever can mean many different things for people with lupus. Knowing what’s causing you to feel hot or feverish is important. It may indicate an underlying condition that needs treatment or that your lupus management plan needs to be updated.
Feeling really hot or running a fever may mean a lupus flare is coming. Research has shown that the most common cause of fever in people with lupus is disease activity. For example, one study in the journal Cureus found that as much as 60 percent of fevers with lupus are caused by active SLE.
If you’re unsure if the heat running through your body is a sign of a flare, take note of any other symptoms or triggers you know usually precede a flare-up. You may notice that feeling extremely hot is part of the pattern. However, while it’s common for fever to be a sign of lupus activity, there may be a different underlying cause that requires a health care provider to diagnose.
When someone with lupus has a fever, infection is usually the first thing to be ruled out because the immune system may be compromised and more prone to infection. Most infections in people with lupus are bacterial and usually located in the urinary tract, skin, or respiratory system.
A health care provider may run blood tests for certain biological markers to see if the fever is caused by an infection or lupus disease activity. In addition, if your fever continues despite your taking medications like acetaminophen or nonsteroidal anti-inflammatory drugs (NSAIDs) to reduce it, an underlying infection could be the probable cause. Fevers caused by lupus disease activity usually improve when these medications are used.
Lupus itself is a risk factor for infection, as it can negatively affect the immune system and limit its ability to fight infection. Taking immunosuppressive medications may increase the risk of infections because they’re designed to limit the body’s overactive immune system. Therefore, people with lupus who have been taking glucocorticoids and immunosuppressive medications for a long time may have more frequent bouts of infection-induced fever.
It’s crucial to determine whether an infection is responsible for your elevated body temperature, as the treatment for the fever varies depending on the underlying cause. Make sure to talk to your health care provider if you’re concerned about infections, including getting any recommended vaccines.
Vasculitis occurs when both large and small blood vessels are inflamed. Because lupus can cause inflammation in different parts of the body, including the blood vessels, people with lupus may be more likely to have vasculitis.
One of the general symptoms of vasculitis is fever. Other symptoms include:
Vasculitis can cause many other symptoms in specific areas of the body, depending on where the inflammation is. For example, vasculitis may affect the intestines and lead to stomach pain, cramps, bloating, or blood in your stool (poop).
In addition to lupus, certain medications, health conditions, or infections may also cause vasculitis. Vasculitis can restrict blood flow to vital organs and tissues, so it’s important to talk to your health care provider if you’re concerned you may have it.
If you have a fever or low-grade fever, it may indicate that you’re coming down with an illness. Many illnesses cause fevers, and knowing exactly which one may be circulating in your body requires a health care provider’s diagnosis.
Some illnesses that commonly cause fever include:
While rare, some illnesses that researchers have found to cause fevers in people with lupus include:
Research on the co-occurrence of lupus and the above illnesses is limited and generally considered rare.
Fever, along with other symptoms like muscle pain, swollen or painful joints, and a rash across the nose and cheeks (often called a butterfly rash) may indicate kidney problems in people with lupus.
It’s very common for people with lupus to have kidney problems — 5 out of 10 adults and 8 out of 10 children with lupus will develop kidney disease, also called lupus nephritis, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Lupus nephritis is more common in men than women, and “African Americans, Hispanics/Latinos, and Asian Americans are more likely to develop lupus nephritis than Caucasians,” according to the NIDDK.
Other symptoms of lupus nephritis include:
You may not notice symptoms of lupus nephritis when they first start, but it’s important to tell your health care provider if you start to see or feel any symptoms. Kidney problems from lupus may get worse over time and lead to kidney failure. If you’re concerned about kidney problems, talk with your care team so you can get tested and treated for any kidney issues as soon as possible.
If you’re feeling really hot and have recently been exposed to the sun or light, sensitivity to light may be to blame. Photosensitivity (sensitivity to sun or light) is common among people with lupus. You might experience a lupus flare when you’re in the sun for a long time. Sun exposure may also cause your body to feel hotter than you would expect from the heat of the sun alone. This is because being exposed to light may cause you to run a fever. Other symptoms of photosensitivity include developing a skin rash, feeling tired, or experiencing joint pain during or after sun or light exposure.
Limiting your exposure to ultraviolet (UV) light may help curb photosensitivity. You can lower your chances of experiencing a flare-up or photosensitive symptoms by wearing sunscreen and protective clothing (like long sleeves and a hat) and by staying in shaded areas to reduce sun exposure.
Some prescription drugs can cause lupus, which is referred to as drug-induced lupus. Drug-induced lupus is not the same as SLE, but they share some symptoms, including fever.
Medications most commonly associated with drug-induced lupus include:
Symptoms of drug-induced lupus take a long time to develop, so it may take months or years of using one of the above medications for symptoms like fever to show up. Stopping these medications will usually make the symptoms go away.
There are several reasons why you might be feeling hot. Try to identify patterns of when you feel so hot your entire body or even part of your body feels like it’s on fire, and share them with your health care provider. It may be that this is one of your signs that a flare is coming. Or maybe it means your body is fighting an infection and one of your medications is making it harder for your immune system to keep up. Talk to your health care provider to seek their help in identifying the reason and finding relief, so you can feel more comfortable.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 221,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Are you living with lupus and experiencing a full-body burning sensation? Do you know what causes your body to feel on fire? Share your experience in the comments below, or start a conversation by posting on your Activities page.