If you are living with lupus, you’ve most likely experienced fatigue as a symptom. According to Dr. Ashira Blazer, assistant professor of rheumatology at the New York University School of Medicine, fatigue is “one of the most troubling symptoms” for people with lupus. Luckily, “there are tools to use to improve your fatigue,” she said.
Here, we explain what causes fatigue with lupus and how to manage this extremely common, yet life-altering, symptom.
If you experience fatigue as a symptom of lupus, you are not alone. It is estimated that 67 percent to 90 percent of people living with systemic lupus erythematosus (SLE) report feeling chronic fatigue. In a 2020 survey of Europeans living with SLE, most respondents reported fatigue as their most bothersome lupus symptom — even more than joint pain and skin symptoms.
Fatigue from lupus lasts longer and is more severe than general sleepiness or tiredness. This severe fatigue can persist no matter how much rest you get. It can affect you physically, cognitively, and emotionally. It can also worsen during a lupus flare. Fatigue can make daily tasks — like cooking, cleaning, or walking up the stairs — difficult or even impossible.
Fatigue is a commonly discussed topic among MyLupusTeam members. Often, members ask questions about fatigue and ways to manage it. One member asked, “How can I manage my diet and what kind of exercise can I do while having fatigue, joint pain, and blood clots?”
Other members have shared their own experiences with daytime sleepiness and how it impacts their day-to-day lives. “I had to call into work as I was very fatigued,” one member said. “Muscles really sore and joints hurt.”
There are many potential causes of fatigue. Stress, poor diet, and overstimulation can cause fatigue. Chronic conditions like depression, insomnia, and anemia can contribute — so can infections and inflammation. On top of these common causes, lupus disease activity is a major source of fatigue.
Why, exactly, does lupus cause fatigue? SLE, the most common form of lupus, can have negative effects on your entire body. As opposed to types of lupus that affect only the skin, SLE is a chronic disease that can impact the kidneys, joints, brain, lungs, and blood vessels.
Fatigue in people with SLE can be related to many different factors — there’s no one cause of lupus fatigue. Some of the factors that can cause fatigue in lupus include:
It’s difficult to know whether fatigue is a cause or an effect of these factors. For example, brain fog can cause fatigue, but fatigue can also cause brain fog. Mental health problems often lead to tiredness, but tiredness can worsen mental health problems. Addressing one or more of these common causes can help to chip away at your fatigue, but there is no one fix that will get rid of your fatigue entirely.
Your lupus treatment could also be contributing to your fatigue. Common lupus medications that can lead to fatigue include muscle relaxants, pain medications (particularly opioids), and corticosteroids like prednisone.
Other common medications that may cause fatigue include cold and allergy medications, blood pressure drugs, and antidepressants. If you take a medication that has fatigue listed as a side effect, ask your doctor if you can take it at night before you go to sleep, rather than in the morning. Changing the timing of your medications — with your doctor’s approval — can be an easy way to reduce some of your lupus-related fatigue.
If you are experiencing lupus fatigue, there are steps you can take to manage it. Understanding the source of your fatigue can help you combat it. The Lupus Foundation of America provides useful tips for living well despite lupus fatigue.
Making small, healthy changes can have proven effects on your energy levels. These changes include improving your diet, exercise, and sleep, as well as cutting out alcohol and smoking.
A nutritious diet can have a huge impact on your energy levels throughout the day. According to the Lupus Foundation of America’s guide to healthy eating with lupus, your diet should include:
Make sure you get enough nutrients like vitamin B12 as well. These foods and nutrients help provide sustained energy throughout the day.
If you’re concerned that your diet is lacking essential nutrients, talk to your primary care doctor. They may want you to speak with a dietitian or take specific supplements. A healthy diet will not only reduce your risk for heart disease and diabetes, but it can also help reduce your chronic fatigue.
Getting regular physical activity is another way to boost your energy. Stick to low-intensity, low-impact activities like yoga, swimming, and biking. Aim for 30 minutes per day in the morning hours. Don’t do anything that hurts your joints or muscles. Do just enough aerobic activity to get your heart rate pumping — this will boost your alertness and mood as well.
Learn some guided stretching and exercises for joint pain in lupus.
Going to sleep and waking up at regular times is crucial in fighting daytime fatigue. Many people living with chronic conditions deal with insomnia and other sleep disorders that contribute to fatigue. If you think you have a sleep disorder or have trouble sleeping through the night, make sure to speak to your rheumatologist. They can refer you to a specialist that focuses on sleep problems.
Even after making lifestyle changes, you might still be left with less energy than you had before your lupus diagnosis. Try creating a daily schedule for yourself that takes into account how much energy you’ll need for certain tasks. Incorporate breaks throughout the day too. Mapping out your schedule can help you decide on the most important activities you need to accomplish each day.
Maybe activities like grocery shopping take up a lot of your energy. If you try online grocery delivery instead, you may find that you have more energy for other activities, like getting dressed and showered in the morning. With careful planning and self-assessment, you’ll be better able to do important tasks every day without getting too fatigued.
As with any extreme symptom of lupus, be sure to open up to your doctor about your fatigue. Even with common lupus symptoms, your doctor should know if your quality of life is being severely impacted. You can use many strategies to talk honestly with your doctor about your fatigue.
For example, give your doctor examples of times when your fatigue caused you to miss out on special events, call in sick from work, or not be able to complete daily tasks. Try to rate your fatigue on a scale of 1 to 10. Describe ways that you cope with your fatigue and how well these strategies work for you.
You could even bring a family member to doctor’s visits to help explain the extent of your fatigue. Your doctor may want to check for other causes of fatigue, like anemia (low blood iron) or thyroid problems. No matter the cause of your fatigue, your health care provider can help you find personalized ways to manage lupus fatigue and improve your overall well-being.
On MyLupusTeam, the social network for people with lupus and their loved ones, more than 213,500 members come together to ask questions, give advice, and share their stories with others who can relate to their lupus experience.
Have you experienced fatigue while living with lupus? How have you managed it? Share your experience in the comments below, or start a conversation by posting on your Activities page.