Changes in seasons often influence lifestyle switches, like swapping out ice cream for hot chocolate or tank tops for sweaters. However, for people living with lupus, such actions aren’t just seasonal — they can often be a response to swings in body temperature made worse by their autoimmune disease.
If you’re living with systemic lupus erythematosus (SLE) — the most common type of lupus, according to the Lupus Foundation of America — you may often have fevers or feel especially warm. Others living with lupus definitely do.
“Yesterday, I felt so hot and sick. I felt like I had a fever and I was 99.1 degrees Fahrenheit,” one MyLupusTeam member wrote.
Several other members empathized, mentioning that they often had body temperatures corresponding to low-grade fevers.
Fevers are a common symptom of lupus and may suggest you’re experiencing a lupus flare. During flares, your blood vessels dilate (widen), leading to higher blood pressure and spikes in temperature. Your body might recognize these temperature spikes through fever, hot flashes, or sweating.
Common lupus treatments, such as corticosteroid medications like prednisone, can lead to hot flashes, sweating, and other related side effects. These reactions may occur due to the medication's impact on your adrenal and thyroid glands, leading to changes in your hormone levels.
If your symptoms become unbearable, consider asking your rheumatologist or doctor whether your medication could be playing a role and ask about other lupus treatment options.
Although overheating is a commonly reported symptom in individuals living with lupus, there are other factors that can cause higher body temperatures or hot flashes. Some common medical conditions that may make you feel warm include:
Many of these conditions are more common in people living with lupus. Several of them have straightforward treatments that can reduce feelings of excessive heat, so it can be valuable to chat with your doctor to decide if you should be tested for any of these conditions.
Having hypothermia (lower body temperature) is not a common symptom of lupus. However, MyLupusTeam members still sometimes say they feel chilled.
One member wrote, “I can be at a perfectly comfortable temperature for hours and not feel cold. Then, suddenly I will get chills over my whole body, or sometimes over a single body part, like a thigh.”
Another member commented that they needed to always dress in warm pajamas and drink three cups of hot coffee every morning. “Mornings are the worst. It can take up to three hours for me to get somewhat warm,” they explained.
In a few cases, individuals with SLE have reported sudden hypothermia during a lupus flare. Such experiences generally develop after taking steroids, but they appear to be very rare. Instead, you’re likely feeling cold because of another medical condition or other lupus symptoms.
If you have lupus or another autoimmune condition, you’re more likely to have a medical condition that lowers your body temperature.
Hypothyroidism (underactive thyroid) is the most common thyroid disease among people with lupus. The condition alters your hormonal balance, and symptoms can include feeling sluggish or cold. Between 15 percent and 19 percent of people with lupus develop primary hypothyroidism, compared to 4.6 percent of the general population, according to the National Health and Nutrition Examination Survey database.
A common treatment for those with an underactive thyroid is taking a thyroid hormone replacement tablet.
Around half of people with lupus develop anemia, which occurs when you don’t have enough red blood cells to carry oxygen around your body. The condition can be linked to feeling cold, especially in your fingers and toes. Treatments for anemia vary, depending on severity and underlying cause. They may include:
Raynaud’s disease — also called Raynaud’s phenomenon — affects up to 33 percent of people with lupus. It’s characterized by blood vessels not bringing enough blood to a person’s feet, hands, or other body parts when it’s cold. With less blood, your fingers or toes may feel cold and numb.
Treatments for Raynaud’s vary, depending on severity. Dressing in layers can help with milder cases. In more severe cases, medication or surgery may be necessary.
Certain lupus symptoms may also result in chills or feeling cold. Hyperhidrosis (excessive sweating) is a common symptom of lupus, which can be uncomfortable and interfere with sleep. One MyLupusTeam member mentioned that they constantly wake up in the middle of the night from constant sweating, feeling “wet and cold.”
Some prescription medications have side effects that include chills. These include medicines used to treat lupus. Known culprits include:
Accurately measuring your internal body temperature can help you figure out what may be causing you to feel hot or cold. Digital thermometers are safer than glass- or mercury-based thermometers and can be easily purchased at most drug stores. Forehead thermometers tend to be more accurate than oral or ear thermometers, but all types generally work fine as long as you closely follow the thermometer’s instructions.
Fortunately, you have several ways to help manage swings in internal body temperature. MyLupusTeam members have recommended remedies, including:
You can always talk to your health care provider about medications and additional ways to treat discomfort associated with fever or chills. You may also consider getting tested for other common reasons for changes in body temperature, such as menopause, thyroid problems, or anemia.
Maintaining a comfortable body temperature may be especially important for you because both heat and cold cause or worsen other lupus symptoms. Your body constricts (narrows) its blood vessels when feeling cold, which can, in turn, lead to uncomfortable swelling or joint pain. Excessive sweating can worsen your sleep quality or lead to more skin rashes or infections.
By taking a few extra measures to help regulate your body temperature, you can hopefully better avoid lupus symptoms and instead spend more time focusing on what you enjoy in life.
MyLupusTeam is the social network for people with lupus and their loved ones. On MyLupusTeam, more than 223,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.
Have you experienced temperature fluctuations, like fevers or chills? How do you manage these symptoms? Share your experience in the comments below, or start a conversation by posting on your Activities page.