Fatigue is the feeling of being extremely tired or having no energy or motivation. While everyone feels fatigue after periods of extended physical or mental labour, it is extremely common in people with a brain injury. There are 3 main types of fatigue :
- Physical - they don’t have energy to complete tasks
- Psychological - they struggle to get or stay motivated
- Mental - they can’t concentrate or complete tasks
People with a brain injury often feel more fatigued because of causes such as trouble resting (insomnia); persistent symptoms of brain injury such as headaches; stress; and struggles with pain. Fatigue can also increase when a person is performing physically or mentally challenging activities. Fatigue affects many aspects of daily living, including memory, concentration, communication, and general understanding. Research shows that when a person experiences fatigue, it can also have negative effects on their mental, physical and emotional health .
Topics in this section include
Fatigue is most commonly associated with feelings of exhaustion and lack of energy. Other symptoms can include :
- Being withdrawn
- Blurry vision
- Decreased balance
- Increase in memory challenges
- Irritability, anxiety
- Loss of appetite
- Lack of interest; lack of motivation
- Slow speech
- Shortness of breath
- The injury
There are parts of the brain that have a direct effect on energy levels and the ability to rest and recharge. Depending on the area of the brain that is damaged, the survivor may find that they experience fatigue more often .
- Muscle weakness
Some individuals experience muscle weakness or reduced mobility after their brain injury. Through the rehabilitation process or when completing activities of daily living, individuals become fatigued when using those muscles. For example, if they are relearning to walk they will find the process tiring. Through consistent effort, people often build up their muscles again and don’t get fatigued by activities as much or as often.
- Mental effort
For some, fatigue comes from cognitive activities. Tasks and actions may require more mental effort, which can leave the person feeling fatigued. This includes reading, using a computer, watching television, or concentrating on a single task like writing, prepping a meal, or even listening to a conversation. Mental fatigue is something many people experience and like with physical fatigue it will improve over time.
- Lack of sleep
Many people report experiencing disturbed sleep after a brain injury . Lack of sleep could be connected to other symptoms of brain injury, pain from a traumatic accident or their mental/emotional state.
If the person with a brain injury is experiencing trouble with sleep, try the following steps for sleep success :
- Keep the bedroom only for sleep - no other activities
- Keep the environment cool and dry
- Set a consistent wake-up/bedtime schedule
- Make sure they get lots of natural sunlight during the day
- Help them get exercise (if permitted). They should avoid exercising right before bed, as this can make it more difficult to fall asleep
- Minimize the number of naps
- Avoid caffeine, sugars and alcohol before bed
- Keep their bedroom dark while they sleep. Remove electronics, and use blackout blinds if too much natural light is entering the room from the window
If the person with the brain injury is experiencing either anxiety or depression, they may also be experiencing increased levels of fatigue. Fatigue is one of the most common symptoms of depression .
Some medications have a side effect of making people feel more fatigued. Doctors will work with the patient to determine an appropriate medication regime and give them strategies to deal with side effects. You should be aware of those side effects and management techniques as well, so you can help the survivor.
Stress is a physical, mental, or emotional response to a situation, and is meant to get a person ready to take some sort of action. An example of this is an approaching deadline, making you work faster.
Stress is something everyone experiences, and in some cases (like meeting a deadline) stress can be good and easily managed. But many people, particularly after life-changing experiences like brain injury, can experience stress that is overwhelming and makes it more difficult to make decisions. Not being able to focus, make decisions, or cope with stress can lead to more stress. It’s a tough cycle that can cause both physical and mental strain. These levels of stress can be caused by environmental factors, social situations, or by internal factors such as the injury or the extra physical and mental effort needed to do tasks.
When a person feels that kind of overwhelming stress, it can cause fatigue because the brain doesn’t get a chance to rest, and stress can interfere with sleep. Both you and the survivor may be experiencing stress that can strain your relationship and reduce your daily quality of life.
There are a few ways you can help the survivor manage stress and manage some of your own stress :
- Identify what is causing the stress. It could be work, school, life changes, travelling, or other activities of daily living (ADLs). You might not be able to avoid stressors, but you can mentally prepare for them
- Don’t avoid decisions. One of the main causes of stress is avoiding problems or decisions, which makes them bigger and more challenging the longer they go unsolved. One of the ways you can do this is taking big tasks and breaking them down into smaller, more manageable tasks
- Ask for help. Friends, family and mental health supports are available to help you both cope with stress
- Do one thing at a time
There are some actions you can take to help the person with a brain injury manage their fatigue.
- Offer to help with daily tasks
Fatigue can make it difficult to complete daily tasks, travel, or go to appointments. Offer to help the survivor with some of their tasks as they build up their endurance.
- Cognitive behaviour therapy (CBT) and occupational therapy (OT)
One of the leading causes of fatigue is the extra mental and physical efforts it takes a person with a brain injury to complete tasks. Cognitive behaviour therapy is designed to help survivors coping with mental and cognitive changes. For fatigue stemming from cognitive changes, cognitive behaviour therapy can be helpful in building endurance and understanding what’s causing fatigue and how to manage it.
Occupational therapy is available to help people living with brain injury relearn skills or find new ways to complete activities of daily living (ADLs). When they practice these skills consistently, it will take less and less energy to complete them - this leads to less instances of fatigue. Remember: the effects of rehabilitation happen over time and recovery is based on several factors. You won’t notice significant changes right away but that doesn’t mean the rehabilitation isn’t helping them. It’s like tracking fitness goals: you notice changes and improvements week to week, not day to day.
These therapies are available both privately and publicly. Private therapy is paid for out of pocket by the survivor or their family. Publicly funded therapy is available at no additional cost: however, availability of public therapy is limited and differs from province to province based on the services available. Your doctor will be able to provide you with more accurate local information or recommendations .
Depending on the survivor’s private insurance or work insurance plan, occupational therapy and cognitive behaviour therapy may be partially or fully covered under psychotherapy services. It is always best to check directly with the insurance provider.
- Ask about fatigue
You may not be aware of how deeply fatigue is impacting your friend or family member. There’s a lot that goes on behind the scenes – it may look like the person is doing fine, but what you don’t see is them sleeping before and after a social event, just so they can have energy to attend. They may want to tell you about their struggles with fatigue, but not know how.
- Create schedules to manage their day and their fatigue
Set out a schedule and help the survivor plan activities, appointments, and tasks for each day. When a person only has so much energy, you want to make sure it will get them through the day. In many cases a survivor’s energy levels before the injury was a lot different than their energy levels now. This means you will have to help them with pacing – taking a bit more time and spreading out their schedule.
When building a schedule, try to do it the night before or in the morning after they wake up. When making a schedule, make sure they do the following things:
- Build in rest periods. One of the best ways to manage fatigue is to give an allotted time to rest. The survivor should listen to their body and avoid “pushing through” if they are feeling fatigued. If you know they need multiple rest periods a day, make sure these are included.
- Schedule activities when the survivor has the most energy. For example, many individuals have the most energy after they wake up in the morning and much less energy in the evenings. By scheduling activities and appointments during the times they have the most energy, you will minimize the risk that fatigue will interfere.
- Exercise and physical activity
This should be undertaken on doctor recommendations. Exercise and physical activity have all-over health benefits but should be reintroduced slowly and under supervision. Overtime they will build up skills and endurance, meaning they can do more and feel less fatigued.
- Have plans in place for unexpected fatigue
Fatigue can be debilitating and leave a person unable to complete tasks. It can also occur unexpectedly, especially immediately following the injury. For example, a person could become fatigued in a public place, at a social event, or at work.
When this happens, having coping strategies can help manage the situation. This could include having hand signals with you, so you know when the person is feeling fatigued or having them call/text you to come get them if they are out on their own. If you’re worried about fatigue catching your friend or family member off guard, try the following aids:
- Have them keep a journal to track when they commonly feel fatigued . This will give both of you more information on times of day that may work best for outings
- Speak with the rehabilitation therapists about strategies for coping with fatigue and public outings
- Manage stress
Elevated stress levels can increase fatigue, particularly for individuals with brain injury who have cognitive and problem-solving challenges. When you identify what causes them stress, you can either remove those stressors or start dealing with them on a gradual basis.
- Manage their expectations
A brain injury is a major life change, and that means abilities have changed. It’s important during recovery to manage both your expectations and the expectations of the person with a brain injury. Focus on what they can do; neither of you should compare where they are today with where they were before the injury. That will lead to negative feelings and fatigue for both of you. Instead, focus on setting weekly or monthly goals and prioritizing health and well-being.
- Track their fatigue
While it can be difficult to identify triggers, it’s important that you and the person with a brain injury learn what makes them feel fatigued: if they don’t, they may experience extended periods of fatigue or feel like they have no control over their energy levels.
- Keep a daily journal
It can be difficult to track fatigue through the course of a day, especially if the person is experiencing memory issues. By keeping a journal of activities and their feelings, they can more accurately identify periods of time where they feel fatigued. You may need to help with the journaling process to make sure it is consistent and accurate.
- Record all medications
Some medications can have fatigue as a side effect. Keep a list of what medications they are taking, when they are taking them, and their side effects.
- Create a rating system
One way to check in with the person with a brain injury and how fatigued they are feeling is to create a rating system. Make a scale from 1-10 and measure their fatigue on that scale. For example, a 1 is not fatigued at all while a 7 or 8 is strong feelings of fatigue.
You should rate their fatigue levels before and after they complete an activity - for example, doing the dishes. If you find that doing the dishes takes them from a 1 to a 5 on the fatigue scale, perhaps suggest taking a break or spread out the task into smaller chunks of time. This rating system will not only help you identify what makes your friend or family member feel fatigued; it will help you identify when they need to take breaks .
- Understand how environments impact fatigue
Some environments can increase a person’s fatigue. This includes places with loud noises, bright lights, overcrowding or that require a lot of travel. By understanding what environments cause fatigue and what environments work best for your friend of family member, they can more easily participate in activities. Over time, you can reintroduce them to other environments for short periods of time. Other tips for environments and fatigue include:
- Wearing sunglasses if it will help them deal with bright lights
- Wearing ear plugs to deal with noise if it does not jeopardize their safety
- Finding places that offer sensory-friendly settings - for examples, some grocery stores have specific sensory-friendly shopping days
Remember: take breaks as often as needed. They don’t have to stay out for a full day if they are experiencing fatigue or other symptoms.
- Use assistive technology and tools
Assistive technology and tools help individuals with acquired brain injury manage their symptoms and complete activities of daily living . There are ways to use assistive devices to cope with fatigue. For example:
- Wheelchairs during walking rehabilitation
- Checklists to help manage tasks and minimize stress
- A sleep journal to track sleep disturbances
Occupational therapists and cognitive behavioural therapists can assist in developing coping methods or introduce the person with a brain injury to tools that manage fatigue.
If you need financial support to obtain assistive devices, you can explore March of Dimes Canada Assistive Devices Program. This program assists adults with physical disabilities who are in financial need to purchase assistive devices that increase their mobility and functional independence.