Summary

Fatigue is a symptom that varies from person to person and can't easily be seen from the outside. It's a common symptom in people diagnosed with mitochondrial disease (mito) and can impact day-to-day life. Doctors can do tests to find out what might be contributing to your fatigue and refer you to other specialists as needed. There are things you can do to help manage fatigue including looking after your physical and mental health. ^1,2

Download the Fatigue and Mito information sheet for more information and practical tips.

Fatigue affects people in different ways and is mostly an invisible symptom. It is often described as feeling sleepy, weak, exhausted or brain fog, making it hard to do physical activities or think clearly. But, unlike tiredness, fatigue does not always go away with rest.

How the mito community describe their fatigue:

"It's the loneliest feeling in the world."

Mito Community Member, 2022

"I find myself feeling frustrated or isolated emotionally in that I can't expect others to understand or relate, yet I wish they did."

Mito Community Member, 2022

Fatigue is something that might be experienced after physical activity, but it can also be caused by different medical conditions, such as mitochondrial disease (mito). Many neurological conditions are linked to fatigue, and it's a common symptom of mito. While fatigue affects individuals differently, it can be particularly debilitating for some. In fact, a significant number of people find fatigue to have a long-lasting impact on their daily lives, lasting for more than six months. ^{2, 3}

Discover more about fatigue, including how it's measured and how common it is, by watching Dr Christina Liang's presentation at the 2022 AussieMit Community Summit.

Symptoms of fatigue

Fatigue can be associated with the following symptoms:

What can cause fatigue?

Whilst the exact cause of fatigue is unclear, several factors can influence fatigue. It's important to understand these factors to address fatigue and its related symptoms.

Primary factors are directly linked to the disease process. In mito, the energy production in cells is affected. This can lead to difficulties in exercising and feeling fatigued. Problems in other body systems due to mito can contribute to sleep disorders, further intensifying feelings of fatigue.

Secondary factors are associated with lifestyle choices, stressors, and psychological factors. By minimising these factors, the overall quality of life for a person can be improved.

Lifestyle-related factors:

Not getting enough or getting too much sleep can make you feel fatigued.
Drinking alcohol slows down your body's systems and can disrupt your sleep.
Smoking cigarettes and consuming caffeine can make it hard to fall asleep or stay asleep.
A lack of exercise can make you feel fatigued. Regular, modified exercise can help you feel better, reduces stress, and gives you more energy.
A poor diet that lacks good nutrition can worsen mitochondrial function by not giving your body enough fuel and essential nutrients.

Workplace-related factors:

Working different shifts can confuse your body's internal clock and disturb sleep can increase fatigue.
Having long and irregular work hours or physically demanding labour .
Feeling unhappy at work, having too much work to do, conflicts, or worrying about job security can increase your fatigue.
Being unemployed, having financial stress, and feeling like a failure or guilty can lead to stress, anxiety, depression, and fatigue.

Psychological factors:

Prolonged feelings of sadness and hopelessness are common for people with chronic illnesses.
Anxiety and stress can cause an increase in adrenaline release that tires your body.
Continually adapting to changes in your health and adapting to these changes can increase anxiety and stress levels.
Financial stress caused by healthcare expenses and missed work due to fatigue can lead to more stress and anxiety, which worsens fatigue.
Losing your sense of purpose due to a mito diagnosis or worsening symptoms can make you feel like you've lost your way.
Trying too hard to appear 'normal' and do things you did before might lead you to distance yourself from others, which can affect how you feel.

Grief is complicated and may include feelings of anger, denial, depression or guilt. If you have a chronic illness, the grief can last a long time. The stress and anxiety associated with grief can contribute to physical symptoms such as fatigue.¹

What tests will my doctor do to find out what's causing my fatigue?

The tests your health professional may carry out vary depending on the potential causes of your fatigue.

These tests may include:

Reviewing how your body's energy works

This involves finding and reducing things that might be damaging your mitochondria, like certain medications, dehydration, or eating a lot of processed foods. Read more about Nutrition and Mito.

Reviewing exercise tolerance

Blood tests

Your health professional might collect a small blood sample for testing during your appointment. They will check your hemoglobin levels, which shows how well your blood carries oxygen. They may check your iron levels and thyroid function, which can affect your energy. They will also screen for diabetes, examine your kidneys and liver function, and look for any signs of infection in your body. When these blood markers are not balanced, they can contribute to fatigue and make you feel exhausted. Read more about investigations for fatigue.

Checking for sleep disorders

Your health professional might investigate if you have any sleep disorders that could be making you tired. Then, they can suggest treatments to help you sleep better if needed. Read more about sleep disorders.

Discover more about how mito can affect your sleep and what you can do about it by watching Dr. Bhajan Singh's presentation.

Consider your emotions

What can I do to reduce fatigue?

Watch Dr Christina Liang discuss managing fatigue.

Reducing stress

Stress uses a lot of energy. So introducing relaxing activities into your days, such as listening to music, reading or spending time with family and friends, may help.

Hear from Registered Psychologist and Mito Community member Shelley Beverley discuss the importance of well-being and maintaining a quality of life while living with mito.

Drinking plenty of water

Limiting Caffeine

Limiting caffeine intake to 200mg per day and avoiding consuming caffeine at least four hours before bedtime is recommended.

The Royal College of Psychiatrists suggests that anyone fatigued should limit caffeine. The best way to do this is to gradually reduce caffeine over 3 weeks. Caffeine is found in coffee, tea, cola, energy drinks, painkillers, and herbal remedies. Try reducing caffeine for a month and keep track of your feelings in a diary. You may find that reducing caffeine gives you headaches. If this happens, reduce the amount of caffeine you drink more slowly.^5,6

Limiting alcohol

Alcohol can disrupt your sleep cycle and reduce the time spent in deep and REM sleep. While you can't control deep or REM sleep, you can adopt healthy daily habits to help. During deep sleep, your muscles relax and repair themselves, blood pressure drops and energy is restored. To promote better sleep quality, avoid alcohol, which can interfere with your body's rest and rejuvenation process.⁵

Talking about fatigue

Maintain a healthy weight

Useful links

Learn more about fatigue
Learn more about the Psychological Impacts of Mitochondrial Disease
If you would like emotional support or advice, please visit: https://www.mindspot.org.au/ or https://www.mito.org.au/peer-support/
Learn about the Australia Patient Care Standards and how to use them when accessing care.

References

1. Torri F, Lopriore P, Montano V, Siciliano G, Mancuso M, Ricci G. Pathophysiology and Management of Fatigue in Neuromuscular Diseases. International Journal of Molecular Sciences [Internet]. 2023; 24(5).
2. Sue CM, Balasubramaniam S, Bratkovic D, Bonifant C, Christodoulou J, Coman D, et al. Patient care standards for primary mitochondrial disease in Australia: an Australian adaptation of the Mitochondrial Medicine Society recommendations. Internal Medicine Journal. 2022;52(1):110-20.
3. Gorman GS, Elson JL, Newman J, Payne B, McFarland R, Newton JL, et al. Perceived fatigue is highly prevalent and debilitating in patients with mitochondrial disease. Neuromuscular Disorders. 2015;25(7):563-6.
4. Rush IR. What are the Physical Symptoms of Grief? 2022 [Available from: https://www.psycom.net/physical-symptoms-of-grief.
5. Carney CE. 11 Ways to Fight Fatigue 2015 [Available from: https://www.psychologytoday.com/intl/blog/quiet-your-mind-and-get-sleep/201501/11-ways-fight-fatigue.
6. Strand E. Fighting Fatigue with Diet 2016 [Available from: https://www.psychologytoday.com/intl/articles/200310/fighting-fatigue-diet.

Fatigue and Mito