Living with any medical condition can be exhausting, but it’s particularly true for people diagnosed with lupus.

Fatigue is one of the most common symptoms people with lupus experience. Often worsening during a flare-up, lupus fatigue can range from mild and manageable to severe enough to impact quality of life

In this article, we explore everything you need to know about lupus fatigue, including the possible causes and things that can help you manage it during a flare-up.

Understanding lupus

Lupus, also known as systemic lupus erythematosus (SLE), is an autoimmune condition that can affect different parts of the body.

In people with lupus, the immune system mistakenly targets and attacks healthy cells, triggering inflammation and a range of symptoms that can vary over time. The condition can affect multiple parts of the body, including the skin, blood vessels, joints, kidneys, brain, heart, and lungs. If the condition is not well-managed, it can lead to organ damage and serious health complications.

One of the most common symptoms of lupus is fatigue, which we’ll explore further in this article.

Other symptoms differ from person to person. They include:

• Joint pain, swelling, and stiffness, particularly in the morning
• Skin rashes, including a “butterfly rash” across the cheeks and nose or scaly rashes on other parts of the body
• Sensitivity to the sun
• Hair loss
• Fever
• Mouth sores
• Shortness of breath
• Headaches
• Brain fog, confusion, or memory problems
• Swollen glands
• Changes in finger or toe color in response to cold or stress (Raynaud’s phenomenon)
• Swelling (edema)

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What is lupus fatigue, and what causes it?

Fatigue is a subjective sensation that influences your mood, energy levels, and focus. It can impact your day-to-day life, relationships, and work.

Despite fatigue being the most prevalent symptom of lupus, researchers are still unclear on the exact cause. Current understanding suggests two broad causes:

• Fatigue may be partly linked to disease activity, such as inflammation during a flare.
• Fatigue may also be influenced by other lupus effects, including pain, sleep disruption, and mental health changes.

In other words, fatigue can have multiple contributing causes and does not always reflect how active the condition is.

Let’s look at some of these factors in more detail:

Pain

Pain, especially ongoing, chronic pain, robs people of a lot of their energy. During a lupus flare, you may experience joint pain and swelling, which can contribute to fatigue.

Mental health changes

Many people with lupus experience mental health changes, including increased symptoms of anxiety and depression. Fatigue is a side effect of both of these conditions.

Organ damage

If left unmanaged, lupus can lead to severe and possibly life-threatening damage to your organs and tissues. Depending on how much lupus has progressed, living with complications from lupus-related damage can significantly worsen fatigue.

Examples of lupus complications that can contribute to fatigue symptoms include:

• Heart and blood vessel complications
• Kidney disease
• Lung inflammation
• Neurological complications, such as seizures
• Blood-related complications, such as anemia

Reduced physical activity

You may find that fatigue and reduced physical activity are cyclical in lupus. During a flare, you may not feel like being physically active—but prolonged periods without movement can worsen fatigue. This is why it’s recommended to keep active as much as you can, even during flare-ups.

Changes in sleep patterns

During lupus flares, you may find yourself waking up in the night or struggling to fall asleep. Over time, sleep loss can compound and significantly worsen your fatigue.

Vitamin D deficiency

For many people with lupus, especially those with cutaneous (skin) lupus, direct sunlight exposure is a trigger. As a result, vitamin D deficiency is common in the lupus community, which is a contributing factor to increased fatigue.

Medications

Many medications for managing lupus list fatigue as a potential side effect. Some of the most commonly prescribed lupus drugs that may impact your energy levels include:

• Steroids
• Pain medications
• Antidepressants
• Muscle relaxants

If you are starting a new medication for lupus, tracking your side effects can help you see how it’s working and whether any symptoms are getting worse.

Evaluating your lupus fatigue

Because fatigue is a subjective symptom that fluctuates over time, it can be hard to get a full picture of how it’s impacting your overall health and well-being.

No test can determine your fatigue level. Instead, your doctor will ask you questions about how you feel and how fatigue is impacting your life.

Tracking your fatigue levels daily is a great way to bring essential information to your doctor’s appointment. This data can reveal patterns and can be particularly helpful in evaluating your current treatment plan.

During your lupus fatigue assessment, your doctor may ask you some of the following questions:

• How long have you felt fatigued?
• Do certain things make it worse?
• Is your fatigue constant, or does it come and go?
• When was the last time you didn’t feel fatigued?
• How does sleep and rest impact your fatigue?

Ways to manage lupus fatigue

While lupus fatigue can be intense, there are still things you can do to make the symptoms less severe.

Talk to your doctor

Your doctor can order diagnostic tests to help rule out other conditions causing your fatigue.

Seeing your doctor during a flare also helps ensure they see the full range of symptoms, so they are less likely to miss something important. They may be able to adjust your medication plan to better manage your current symptoms.

Plan ahead when you can

During a flare-up, managing your energy is essential. To help make the experience less stressful and draining, try to:

• Only do what is absolutely necessary.
• Plan rest into your days.
• Opt for convenient options, like shopping online, when you can.
• Have pre-prepared meals ready in the freezer for when your symptoms worsen.

Ask for help

Asking for help from your friends and family is essential for not overdoing it during a lupus fatigue flare. Seeking community in lupus support groups can also be helpful.

Lean into healthy habits

Sticking to a modified version of your daily routine can help manage fatigue symptoms. This can include:

• Exercising at a level that feels manageable for you
• Getting quality sleep
• Eating nutritious lupus-friendly foods

Get a clear picture of your fatigue patterns

Most people with lupus experience fatigue as part of their condition. Yet, because fatigue is subjective and ever-changing, explaining the impact to your doctor can be challenging.

Using the Human Health app, you can track your energy levels, sleep quality, possible triggers, and flare days together in one place to understand what’s driving your exhaustion. You can then share clear information with your doctor so they can adjust your treatment plan.

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Frequently asked questions

How long does lupus brain fog last?

Lupus brain fog is a common symptom that can impact mental clarity during a flare. For most people with lupus, brain fog symptoms are episodic, appearing or worsening in severity throughout the flare-up. How long symptoms last depends on the length of the flare, which can range anywhere from a few days to months.

Is fatigue common in people with lupus?

Fatigue is very common in people with lupus. As many as 67–90% of people with lupus experience fatigue.

How do you stop lupus flares?

Because there’s currently no cure for lupus, reducing the frequency and severity of flare-ups is the primary form of treatment.

Medications and lifestyle interventions are both helpful in reducing lupus flare-ups. Examples of medications include antimalarials, steroids, and NSAIDs, and lifestyle adjustments include reducing stress, quitting smoking, and avoiding sun exposure.

Disclaimer: Human Health is a health tracking platform and does not provide medical advice, diagnosis, or treatment. The information in this guide is for educational purposes only and is not a substitute for professional medical care. Always consult your doctor or healthcare provider with questions about your health.

Sources:

1. Systemic lupus erythematosus (2023)
2. Fatigue in systemic lupus erythematosus: an update on its impact, determinants and therapeutic management (2021)
3. Systemic lupus erythematosus (lupus), The National Institute of Arthritis and Musculoskeletal and Skin Diseases
4. Lupus fatigue, WebMD
5. Strategies for managing fatigue, The Lupus Foundation of America
6. Lupus support groups, The Lupus Foundation of America