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Fatigue & Sleep Disturbances

Facial rash is a common symptom of lupus

Fatigue and Low Energy

Fatigue is experienced by up to 90% of people with lupus and is often reported as the most disabling symptom from the disease. Extreme fatigue is a common lupus flare warning sign, but fatigue can persist even if lupus activity is low. Fatigue can range from mild to severe. People with lupus who use tobacco or are overweight have higher rates of fatigue. Additionally, the effect of stress on body chemistry may increase the risk of chronic fatigue.

The following are signs of fatigue:

  • Unable to carry out normal daily activities
  • Feeling tired, exhausted, and lethargic
  • Fatigue increases during physical activity, when trying to focus, or when experiencing emotional stress
  • Trouble sleeping and feeling tired after a full night's sleep

There are additional symptoms that often accompany fatigue:

  • Brain fog, trouble thinking clearly, and memory problems
  • Feeling ill from standing up (known as orthostatic intolerance) and feeling better after lying down and elevating the feet
  • Feeling weak, dizzy, or out of balance when walking
  • Nausea, bloating, digestive discomfort, and sensitivities to certain foods
  • Discomfort in the chest and irregular heartbeat, especially when standing or walking
  • Cold hands and feet
  • Not being able to tolerate extremely hot or extremely cold temperatures
  • Sensitive to sound and light
  • Feeling feverish or like you have the flu, especially when tired
  • Muscle and joint pain

Seeing a Doctor for Chronic Fatigue

When seeking care for fatigue, your doctor may search for other causes of your symptoms. This may include questions about sleep, mood, a review of medications and supplements, and lab work. Vitamin D deficiency may be associated with fatigue and is a particular concern for people with lupus.

Trouble Sleeping and Insomnia

Insomnia is a sleep disorder where people may have trouble falling asleep or staying asleep. In addition to trouble sleeping, insomnia can cause daytime sleepiness, low energy, irritability, and depressed mood. A traumatic event or stress can lead to insomnia for at least short periods of time. For those who experience insomnia lasting a month or more, this is considered chronic insomnia.

Seeing a Doctor for Trouble Sleeping and Insomnia

Talk with your doctor if your insomnia is making it challenging to function during the day. You may be referred to a sleep center for special testing. Here are a few changes your doctor may recommend to try to improve your sleep quality:

  • Keeping a consistent sleep schedule so that your bedtime and wake time does not vary much from day to day, including weekends
  • Reduce or eliminate your caffeine and alcohol intake
  • Avoid products that contain nicotine
  • Create a bedtime routine that is relaxing, such as taking a warm bath, reading, journaling, or listening to music
  • Avoid electronic screen time at least 30 minutes before going to bed
  • Avoid or reduce naps
  • Don't eat large meals or beverages before bed
  • Use blackout blinds or materials to block light from entering your room
  • Limit the use of electronics (TV, telephones) in your bedroom
  • Train pets to sleep out of your bedroom

Self-Care for Fatigue and Sleep

If fatigue is one of the major symptoms you are struggling with, an important self-care tool will be "pacing" also known as "living within your energy envelope". To learn more about pacing, visit our Self-Care Pacing Module.

Other self-care strategies that can be helpful for fatigue and sleep include:

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