If you or a loved one is living with lupus, fatigue is likely to be one of the most difficult symptoms. Up to 80% of people with lupus say that fatigue is a primary symptom. About 40% of people with lupus have fatigue that’s severe and doesn’t go away. Just about everyone with lupus will struggle with fatigue at one time or another.
Fatigue isn’t the same as just feeling tired. When a healthy person gets tired, they can go to bed and get up feeling better the next day. If you have fatigue related to lupus, it may feel like you can’t possibly get enough rest. Even if you sleep more than you used to, it may feel like it’s never enough.
You may find that it’s harder to do physical and mental work. The effort needed to do everyday tasks may be overwhelming. You may find you can get a few good hours in each day before you just hit a wall of fatigue.
Lupus Fatigue Causes
Lupus is a chronic inflammatory autoimmune disease. It affects many different parts of the body, including your nervous system, skin, joints, kidneys, and other organs. It’s not clear what causes lupus. So, it’s not clear what causes lupus-related fatigue either.
While doctors don’t really know exactly why lupus causes so much fatigue, there are lots of factors that may have something to do with it. These include:
- Not enough physical activity. Most people with lupus don’t get enough exercise. If you feel fatigued, it might be harder to go for a walk or spend a few minutes on the treadmill. But, this lack of activity also can make your fatigue worse.
- Obesity. More than half of people with lupus are overweight or obese. Some studies suggest that people with lupus who also are obese tend to have worse fatigue.
- Trouble sleeping. Many people with lupus have trouble sleeping. If you are waking up a lot at night or having trouble falling asleep, this can lead to more tiredness and fatigue throughout the day.
- Anxiety and depression. About 1 in 4 people with lupus have depression and anxiety. Depression and fatigue often go hand in hand. Some studies have suggested that this is even more true in lupus than it is in other health conditions, such as multiple sclerosis (MS).
- Vitamin D deficiency. Most people with lupus don’t have enough vitamin D. This may be in part because of a tendency to avoid going outside in the sun. People with lupus who don’t have enough vitamin D also report worse fatigue.
- Pain. Many people with lupus have pain and arthritis in their joints as well. This pain may contribute to fatigue. People with lupus who report more pain also tend to report greater feelings of fatigue.
- Medications. The medicines you’re taking to help with the lupus or other health conditions might cause you to feel fatigued. Medications that can cause fatigue include:
- Prednisone
- Pain medicine
- Antidepressants
- Blood pressure medicine
- Muscle relaxants
- Cold and allergy medicine
Ask your doctor if fatigue is a common side effect of anything you’re taking.
- Other health conditions. If you have lupus, you’re also at greater risk for having other conditions, including fibromyalgia. However, studies vary a lot with regard to how common this is. Some suggest 10% of people with the most common type of lupus have fibromyalgia. Others suggest it’s as high as 70%. Thyroid disease and anemia (low iron) also may play a role in fatigue when you have lupus.
Measuring Lupus Fatigue
Fatigue is hard to define. It’s also hard to measure. There’s no blood or imaging test your doctor can give you to gauge how fatigued you are.
The only way to gauge your fatigue is based on how you feel and how much you think feelings of fatigue are affecting your ability to work or enjoy life. Doctors do have standard ways to assess fatigue and see how it changes over time.
It’s also a good idea for you to keep track of your activity levels, fatigue, and other symptoms. By learning more about yourself and your limits, you can better manage your day. It also will be easier to notice and let your doctor know if your fatigue is getting worse.
Some questions your doctor might ask you to try and understand your fatigue and ways to help include:
- Is your fatigue constant or does it come and go?
- How long have you felt fatigued?
- Do you sometimes have periods when you aren’t as fatigued?
- Does your fatigue get better with rest?
- How does your fatigue affect you physically?
- How does it affect you mentally?
- Can you tell me about your lifestyle, including work, diet, and physical activity?
- Do you smoke or drink alcohol?
- How well do you sleep?
- Are you having a lupus flare?
- Do you have any other health conditions?
- What medicines are you taking?
Your doctor also should do a full workup to make sure there aren’t other things going on that could be treated to help your fatigue.
Managing Your Lupus Fatigue
When you have lupus, chronic fatigue can be debilitating. It can make it hard to enjoy life and to work. If fatigue is causing concern and limiting your ability to function, see your doctor for help.
The first thing to check is whether the lupus is active. If it is, then the first thing to do is to work on getting the lupus into remission. Your doctor might suggest you take more medicine to suppress your immune system. Or they may suggest you change your medicine or add to them.
Sometimes people with lupus feel very fatigued even when the lupus doesn’t seem active. In this case, taking more medicine for the lupus may not help.
If your doctor finds other conditions that may play a role in your fatigue, take steps to treat those. For example, if you have depression, anemia, kidney disease, or thyroid problems also, make sure you’re addressing them.
Once you have the lupus and other health conditions controlled as best you can, it’s time to think about other factors. It may be hard to get started, but there’s a lot you can do. Exercise -- even just a few minutes at a time -- will help improve your energy. Try different activities to see what you like. If it’s hard to do it in the morning, try later in the day.
In addition to exercise, make sure you get enough rest. Eat healthy foods and avoid unhealthy habits, such as smoking or drinking too much.
Tips for Living With Lupus Fatigue
For many people with lupus, fatigue is a fact of life. But there are strategies that may help you to manage better. Try these tips:
- Plan your days so that you get the most important things done first.
- Include times for rest in your day.
- Prioritize social and other activities so that you make those that are important to you and skip the rest.
- To the extent you can, avoid stressful activities. Stress can make your fatigue worse.
- Take breaks often.
- Therapy may help you think about your lupus and fatigue differently. If you are able to learn to adjust your beliefs, it may actually help you manage your fatigue better.
- Be patient with yourself. Some days will be better than others.
- Connect with people who understand and can offer advice by joining a support group, either in person or online.