Coping with fatigue from a brain tumour

Many people who have been diagnosed with a brain tumour or had brain surgery experience fatigue. This can be due to the tumour, its treatment, or stress.

There is no direct cure for brain tumour fatigue, but there are ways of coping with it. Many people find the five Ps helpful in coping with fatigue. These are Prioritising, Planning, Pacing, Posture and Permission.

Here we’ll discuss these in more detail as well as provide some more tips on coping with fatigue from a brain tumour.

About brain tumour fatigue

Brain tumours can cause fatigue through the tumour itself, the treatment for the tumour, and other things that relate to the tumour, like stress or cognitive difficulties.

Many people’s fatigue begins to improve within six months to a year after treatment. However, some people experience it for longer and the effects of fatigue can be debilitating no matter how long you experience it.

Up to 80% of people think there is nothing that can be done for tumour-related fatigue and don’t mention it to their healthcare team. 

However, if fatigue is affecting your quality of life, speaking to your healthcare team can result in treatment for some of the factors that contribute to fatigue – for example, pain, anxiety or depression. They may also be able to refer you to other specialists that can help such as counsellors, support groups or complementary therapists.

How to cope with brain tumour fatigue

Fatigue can be part of a vicious cycle caused by the side-effects of brain tumours and their treatments. Many of the symptoms of fatigue can make you feel more exhausted, making the fatigue worse and, consequently, increasing the impact of those symptoms.

However, if you can work out what triggers your fatigue, you may be able to find a way to break the cycle.

Many people have found the ‘Five Ps’ helpful, especially with the support of family and friends. They can help by giving you gentle reminders or prompts to help you manage your daily activities.

Prioritising

Write a list of activities that you do regularly and assign priorities to them, with number one being the most important to you.

For example, walking the dog may be a one; seeing friends, a two; and ironing, a six.

If you find this tricky, you can split the activities into four categories:

• things I have to do
• things I want to do
• things someone else can do for me
• things that don’t need to be done or don’t need to be done right now.

Planning

Keeping a diary of your activities and when you feel fatigued can help you identify possible triggers and patterns in your energy levels. 

Colour coding your activities may be helpful, for example:

• red for high-intensity activities, like exercise or going to work
• orange for medium-intensity activities, like meeting a friend or housework
• green for low-intensity activities, like relaxing or listening to music.

You can use this information, alongside your list of priorities, to plan your day. Remember it’s important to have a balance of rest and activity.

Setting yourself goals can give you a sense of purpose and achieving your goals can be a real boost to your recovery. However, you should try not to be too ambitious and set realistic goals.

Make a realistic, achievable action plan, carry it out and review it afterwards. Accept that sometimes your fatigue will be too overwhelming to do everything on your action plan and remember to celebrate your achievements.

Pacing

Where possible, you should try to break down your tasks into smaller, manageable chunks. You can do this using the same categories used in the prioritising section above. 

Planning short rest breaks throughout the day can help minimise the impact of fatigue. As a guide, you should rest for ten minutes out of every hour, but try not to sleep during these rests – as this could affect your sleeping pattern.

And, remember that you can always stop if you’re getting tired. You don’t have to stick to your plan.

Keeping 20-30% of your energy in reserve can prevent you from burning out. “Spending” it wisely by shopping online or asking others to help you out can be a great way to conserve your energy.

Posture

Being mindful of your posture and how you’re using your body can help you cope with fatigue caused by a brain tumour. For example, sitting down to complete a task instead of standing can save you a vast amount of energy.

Keeping things where you can easily reach them will prevent you from having to reach up or bend down when you need them. Making sure that you don’t sit or stand in one position for too long can help ease mental fatigue.

Permission

Give yourself permission to say no, if you don’t feel up to it or don’t want to do something.

You can delegate to others if and when it’s possible.

Other ways of coping with fatigue when you have a brain tumour

Treat the specific cause of your fatigue

Fatigue can be caused by a wide range of factors, including your treatment, your medication, your diet and your mental health. Speaking to your healthcare team may help you discover what is causing your fatigue and take steps to lessen the impact. 

It’s important to remember that you should never change your medication or treatment without speaking to your healthcare team first.

Stay physically active

It may seem like it would make you more fatigued, but gentle to moderate exercise is believed to help:

• increase your energy levels
• reduce pain
• improve the quality of sleep
• stimulate your appetite
• boost your sense of well-being.

Inactivity, on the other hand, can lead to breathlessness and muscle weakness, which adds to feelings of fatigue.

If you’re having a more difficult day with your fatigue, your exercise might simply be moving to and from the kitchen or up and down the stairs. Don’t feel guilty about this. You may feel able to do more tomorrow or later in the week.

After the exercise, you should feel energised, not wiped out. So, it’s important that you don’t overdo it. Finding a type and level of exercise you can manage and enjoy doing most days of the week can help you find the right balance.

Keep your mind active

Research suggests that mental fatigue may be key part of physical fatigue. So, keeping your mind active can be helpful. 

Puzzles or activities, such as arts and crafts, can help stimulate your mind and leave you feeling mentally refreshed.

Have a regular sleep pattern

Keeping to a regular sleep routine can play a big part in lessening the impact of fatigue. To encourage a regular sleep pattern you should try to:

• avoid sleeping during the day
• not drinking caffeine and alcohol close to bedtime
• have your bedroom at a comfortable temperature
• stop using back-lit devices or screens one to two hours before going to bed.

If you aren’t able to get to sleep within 30 minutes of going to bed, you should go to another room and read or listen to music until you feel sleepy. Then repeat your getting ready for bed routine again.

Eat like a marathon runner!

Your diet is important and plays a vital part in maintaining your energy levels. It’s important to try to eat a balanced diet, but you should also try to eat foods you enjoy – especially if you’re really struggling with eating enough.

Pasta, fruit and whole-grain breads are full of complex carbohydrates that provide you with long-term energy. Eating little and often will help keep your energy levels stable, particularly if you combine complex carbohydrates with vegetables, dairy and a small amount of protein.

Using frozen vegetables or pre-cut foods and sitting down while preparing meals can help conserve your energy. Making large amounts and then freezing leftovers for future meals can be a great time and energy saver. You could also ask your friends and family to help you with this or prepare some meals for you. 

Where possible, avoid takeaways and over-processed or refined foods as they usually have less nutritional value than fresh food.

Stay hydrated!

Dehydration can lead to tiredness. It can also lead to feeling or being sick. Being sick causes a further loss of fluids and important minerals that your body needs. This can make you feel more tired.

If you’re concerned that you’re dehydrated, as well as drinking more water, seek medical advice from your doctor, as you may need help to restore your mineral balance.

Manage stress and anxiety

Stress and anxiety use up lots of energy. By learning to recognise your triggers and how your body responds to them, you can help lessen the effects of fatigue.

There are many strategies to help cope with anxiety, including mindfulness, breathing exercises, relaxation aids, colouring books, gentle music and herbal pillows. 

Counselling can help reduce feelings of stress, anxiety or depression. Your GP will be able to provide further information and should be able to refer you to a counsellor, if appropriate.

Manage pain

Some people with a brain tumour experience headaches and other pain. Fighting it can be wearing, making you fatigued.

As well as using painkillers, some people find that techniques such as relaxation and mindfulness help to alleviate pain and therefore help with fatigue.

Acupuncture can also be used to treat pain, but let your medical team know if you’re having acupuncture.

Find reliable information

Making sure you have access to reliable information about your diagnosis and treatment can mean you’re better equipped to cope with fatigue. Our information is sourced from professionals in the field and regularly audited, making it reliable.

How can I explain my fatigue to others?

Fatigue can’t be seen and it can vary from person to person. As a result, it’s often misunderstood. It can be difficult for other people to really understand how it feels.

Friends and family, and even people with a brain tumour, therefore sometimes see fatigue as laziness, or wonder if the person is exaggerating symptoms. This is obviously not the case, but it can cause more stress, adding to the fatigue.

Fatigue can, therefore, profoundly affect your personal, social and working life. It can lead to difficulties in relationships, social isolation and loss or reduction in employment. This, in turn, can cause financial difficulties, extra stress and more fatigue.

Analogies about conserving energy can be useful when explaining how you feel:

• A rechargeable battery, which runs down more quickly than before you were ill.
• A car with a broken petrol gauge. You know there is ‘fuel’ in there, but don’t know how much is left, so you need to be more cautious and think about how you could refill it.

We have also developed a range of employment resources which may help you when explaining the effects of your brain tumour to your employer or when you are looking for work.

Get help, advice and support

If you or a loved one has been diagnosed with a brain tumour, you can always contact our Support Team. We offer a wide range of support, from advice over the phone to events where you can meet and share experiences with others.

If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:

Support and Information Services

0808 800 0004 Free from landlines and mobiles

support@thebraintumourcharity.org

Phone lines open Mon-Fri, 09:00-17:00

Research & Clinical Trials Information

clinicaltrials@thebraintumourcharity.org

Clinical trials and research information

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If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.

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