ALS and fatigue
Reviewed by Fatigue in amyotrophic lateral sclerosis (ALS) is common, affecting close to half of people living with the condition. It goes beyond simply feeling tired and can lead to deep exhaustion that makes movement, speech, and concentration more difficult.
Although ALS fatigue can seriously affect daily life, management strategies such as conserving energy, planning regular breaks, and practicing relaxation techniques can make it more manageable and reduce its impact.
What does ALS fatigue feel like?
ALS fatigue can feel like an overwhelming exhaustion that does not fully go away with rest and often worsens throughout the day. It can result from muscle weakness, breathing or sleep problems, medications, nutrition, emotional health, or other treatable causes.
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| Type | Characteristics |
|---|---|
| Muscle fatigue | muscles tire during repeated activity |
| General exhaustion | whole-body tiredness or low energy |
| Daytime sleepiness | drowsiness or difficulty staying awake |
| Muscle weakness | reduced strength when performing tasks |
| Low motivation | less drive or interest in activities |
Muscle fatigue and weakness
Because ALS weakens the muscles, everyday activities like walking, taking a shower, getting dressed, or eating can take more effort. The affected muscles may tire very quickly, adding to the overall feeling of fatigue.
Physical exhaustion and low energy
Beyond muscle tiredness, ALS can leave the whole body feeling drained, even without any demanding physical activity. Energy levels may drop as the day goes on, making everyday tasks harder to complete.
Daytime sleepiness and mental fatigue
ALS can weaken the muscles that help with breathing, which may interrupt sleep and make it harder to get enough rest at night. This can leave people feeling sleepy during the day and affect the ability to think clearly or concentrate.
When can fatigue signal a breathing problem?
Fatigue in ALS may be a sign that the breathing muscles are becoming weaker, especially when it comes with:
- shortness of breath
- interrupted sleep
- morning headaches or confusion
- daytime sleepiness
- trouble breathing while lying flat
What causes fatigue in ALS?
Fatigue in ALS may come from the condition itself, as well as physical, emotional, or lifestyle factors that can leave a person feeling more exhausted.
These are common causes of fatigue in ALS:
Muscle weakness and spasticity
ALS-related muscle fatigue can make everyday activities more difficult, especially when it occurs alongside spasticity. The stiffness or tightness caused by spasticity can make routine movements like walking or standing require even more effort and energy.
Breathing and sleep changes
When breathing muscles weaken, it can become more difficult to breathe well at night and get enough rest. This can result in waking with a headache or feeling sleepy and low on energy throughout the day.
Nutrition, hydration, and weight loss
Weaker muscles can make chewing and swallowing much harder while living with ALS. When the body does not get enough food and fluids, it can lead to weight loss and more fatigue.
Pain, medications, and other health conditions
Living with pain can take a toll on energy and make it harder to sleep, contributing to fatigue. Research from 2024 identified a close relationship between chronic pain and chronic fatigue. If someone has long-lasting pain, their tiredness is less likely to improve.
Some medications used for pain or muscle stiffness can also cause tiredness.
Other health conditions can add to the effects of ALS and make fatigue worse.
Stress, anxiety, depression, and grief
Living with ALS can take an emotional toll as well as a physical one. Stress, anxiety, depression, and grief can use up more energy, disrupt sleep, and worsen fatigue.
When should I contact my ALS care team?
If a new medication or a dosage change leads to a feeling of weakness, let the ALS care team know. They may change the dose or find an option that works better.
Contact a doctor as soon as possible about new breathing trouble or if breathing becomes harder than usual.
How can ALS fatigue be managed?
Managing ALS fatigue starts with understanding what may be causing or worsening it. From there, gradual changes to daily routines, rest, sleep, and regular movement can help manage fatigue with ALS.
Identify and treat contributing problems
ALS may not be the only reason for fatigue. Tracking tiredness and what makes it worse can help the care team identify other causes and recommend the right support.
Possible contributions to fatigue include:
- poor sleep
- breathing changes
- pain
- medication side effects
- poor nutrition
Plan activities around energy levels
Pay attention to how energy levels change throughout the day and save more demanding tasks for times when energy is highest. Planning around these periods and focusing on what matters most can help to prevent energy from running out too quickly.
Balance activity with rest
Plan rest periods throughout the day to prevent exhaustion before energy runs too low. Taking short breaks between activities can help avoid feeling completely worn out and save some energy for later.
Use mobility aids and adaptive equipment
Canes, walkers, wheelchairs, and other helpful equipment can reduce the effort needed for everyday tasks. This can help save energy and manage fatigue.
Improve sleep and nighttime comfort
Keeping a regular sleep routine can make it easier to get enough rest. Supportive pillows or a different sleeping position may also help with discomfort at night.
If pain, stiffness, or breathing problems keep interrupting sleep, the ALS care team can suggest treatment or equipment that may help.
How can occupational and physical therapy help?
Occupational and physical therapy can make everyday activities feel easier and less tiring.
An occupational therapist can suggest easier ways to carry out daily tasks, including home changes or supportive equipment.
A physical therapist can recommend gentle exercises, such as stretches, to support movement and conserve energy.
How can I conserve energy for what matters most?
Energy conservation for ALS starts with choosing what matters most and saving the best parts of the day for those activities.
Small changes like sitting instead of standing, keeping essential items close by, accepting help, and resting before exhaustion sets in can leave more energy for later.
How can family members and caregivers help?
Family members and caregivers can help with ALS fatigue by taking on household chores or other demanding tasks, while also checking in to see what support is needed.
Simply being available to listen can also mean a great deal to someone living with ALS.
Questions to ask the ALS care team
Consulting the ALS care team can help clarify what may be contributing to fatigue and what changes could make it easier to manage. Helpful questions to ask include:
- Could anything besides ALS be adding to the fatigue?
- Should breathing or sleep be checked?
- Could any medications be causing tiredness?
- Would changes to nutrition or hydration help?
- Could therapy or supportive equipment make daily activities less tiring?
- What changes should be reported right away?
ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
