Fatigue is a common and invisible symptom for many people living with cerebral palsy. Beyond physical limitations, constant effort to move, think, and engage can lead to overwhelming exhaustion. Understanding fatigue is key to improving quality of life and daily functioning.
In this article you can read about:
- What is fatigue?
- What are the signs of fatigue?
- Why does cerebral palsy cause fatigue?
- How to manage fatigue?
- Fatigue and physical activity
What is fatigue?
Fatigue associated with cerebral palsy (CP) is often described as an overwhelming sense of exhaustion and decreased capacity for physical and mental work and goes beyond normal tiredness. It’s not just feeling sleepy, it’s a persistent lack of energy, motivation, and focus that is not relieved by rest.
Most research on fatigue includes adults with CP and it is known that fatigue affects up to 60% of adults with CP. Research on children with CP and fatigue is limited, but shows higher self-reported fatigue compared to typically developing children.
What are the signs of fatigue?
Sings of fatigue can differ among individuals, but some typical signs include:
- Muscle aches or cramps
- Reduced stamina
- Sleepiness or drowsiness
- Slower movements
- Irritability or mood changes
- Difficulty concentrating
Why does cerebral palsy cause fatigue?
Fatigue is a significant challenge not only for individuals with cerebral palsy but also for those with other neurological conditions, such as brain injuries sustained later in life. Research indicates that individuals with cerebral palsy expend three to five times more energy while walking compared to their typically developing peers. Moreover, activities that are automatic for people without cerebral palsy require continuous concentration and energy from those with the condition.
Often fatigue is described in two ways:
- Primary fatigue
- Secondary fatigue
Primary fatigue - is related directly to the neurological condition, and the reason for this is not fully understood. Some explanation can be found in the nervous system having to work hard to send signals from the brain to the body. Several studies also indicate that people with CP use 3-5 times as much energy on walking compared to typically developing peers.
Secondary fatigue - is not directly related to the condition, but rather a consequence of living with a neurological condition. Some factors that can contribute to fatigue are:
- Pain
- Spasticity
- Physical deconditioning
- Sleep challenges
- Stress
- Depression
- Nutrition
- Medication
- Other medical conditions
Many of these factors are interconnected. An example: If you have high levels of spasticity, this may cause pain. These two factors together may result in problems with falling asleep, staying asleep, or getting the right kind of sleep. This again can affect your mood!
Research has also revealed that people with CP are less physically active compared to typical developing people, and this can lead to the cardiovascular system and muscles being deconditioned. This may influence the individual's ability to carry out everyday activities and result in greater fatigue.
How to manage fatigue?
The most widely used method for addressing fatigue in people with cerebral palsy and other neurological conditions is energy management. This approach helps to understand what factors contribute to fatigue by tracing energy levels and identifying what factors most influence fatigue and help the individual to plan rest periods.
First of all, it is useful to track fatigue to identify if there is any pattern. The most effective way to do this is to write down all activities you do daily over a time period and add a fatigue score to each activity. As an example, the score could be 0-5 where 0 is no fatigue and 5 is exhausted. You can also add more scores if you like to be even more detailed. You can define “priority” level for every activity/task with 0-5 where 0 is not important and 5 is essential.
There are several ways to track fatigue, but the most important is to get an overview and understanding of:
- Are there times a day or during the week where you experience fatigue?
- Does fatigue appear after specific activities or the day after the activity?
- What type of activities energise you, and which ones drain your energy?
When you have this overview, it is time to prioritize for yourself and find out if there is a different way to do daily activities, organise differently etc:
- What activities should I do?
- Should I ask for more support?
- Is it possible to schedule activities differently?
- Can I schedule breaks?
- Do I have the right equipment available to support me in daily life?
Fatigue and physical activity
You may think that fatigue and physical activity don’t go well together, but that’s not the case! Staying fit and active is one the best way to combat fatigue.
Fatigue is often linked to reduced physical fitness. That’s why it’s important for individuals with CP to focus on developing stamina from an early age. While functional skills are essential, building endurance helps create the capacity to take on a variety of activities—both now and in the future. Good habits formed in childhood can have lasting benefits.
For those with motor impairments, finding suitable activities that also raise the heart rate can be challenging—but not impossible. With creativity and adaptation, meaningful movement is achievable. While solo workouts are great, joining group activities can boost motivation and make exercise more enjoyable.
Having fatigue doesn’t mean you should avoid activity altogether. It’s about finding the right balance between rest and movement and choosing activities that bring you joy and energy.
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