Managing fatigue with a terminal illness
Fatigue (feeling very tired and weak) is common if you’re living with a terminal illness or are near the end of your life.
This page has information to help you understand and manage your fatigue.
On this page
- What is fatigue?
- Why do I feel so tired?
- How will fatigue affect me?
- How can I manage my fatigue?
- Plan, prioritise and pace (the 3 Ps)
- Making things easier for yourself
- Finding ways to relax and manage stress
- Talking therapies
- Improving your sleep at night
- Staying active (if you can)
- Eating and drinking
- Is there medication for fatigue?
- Who can I speak to about my fatigue?
What is fatigue?
Fatigue is a feeling of extreme tiredness, weakness or lack of energy. Unlike normal tiredness, fatigue does not go away when you rest or sleep.
People often think of tiredness as affecting their body. Even if you are sleeping a lot, you may feel physically exhausted, weak and lethargic.
Fatigue is one of the most common symptoms in people with a progressive or terminal illness. Around 4 in every 5 people receiving palliative care say they experience fatigue.
If you are nearing the end of your life, fatigue and its effects on your daily life can be very upsetting.
Why do I feel so tired?
Lots of things can cause or worsen fatigue. There may be several things combining to make you feel so tired.
The following are all possible causes. You may want to note down any that are relevant, so you can think about ways to manage them.
Your illness or condition - Some illnesses can cause fatigue. For example, chemicals linked to inflammation in advanced cancer may make fatigue worse.
Your illness may cause other health problems that lead or add to fatigue, such as:
- anaemia
- altered hormone levels
- problems with your nerves and muscles
- poor heart, lung or kidney function
Treatments - Some treatments used to help manage symptoms or side effects can also make you tired. This includes some common painkillers.
Taking lots of different medicines at the same time can also affect your energy levels.
Poor rest and sleep - Finding it difficult to fall asleep, or waking up in the night, can make fatigue worse. Visits from friends or family, healthcare workers or other community support might also interrupt your rest or sleep.
Poor mental wellbeing - Depression, anxiety, fear and distress can all make you feel exhausted, weary or wiped out.
Infection - Your body uses energy to fight off infections, which can make you feel exhausted. You may continue to feel very tired, even after the infection has gone.
Inactivity - As you become less active, your muscles get weaker and your blood moves more slowly around your body. Your body’s cells get less oxygen and nutrients, so they produce less energy. This can add to your feelings of extreme tiredness.
Changes in eating habits - It is natural to eat less, particularly in the last weeks and days of life. Eating less, and getting fewer vitamins and minerals, can make you feel more tired.
Dehydration - Not getting enough fluids can make you feel tired, lethargic and confused. You may be dehydrated if your urine is dark and has a strong smell.
When people are very ill and approaching the end of their lives, their bodies can't use food and fluid like they could when they were well. Your healthcare team will be able to provide advice in relation to this matter.
How will fatigue affect me?
Fatigue affects people in different ways. It could affect your:
- physical ability, such as making it difficult to climb stairs or walk short distances
- mental ability, such as concentrating, remembering things, thinking logically and making decisions
- ability to do activities and tasks, even simple daily tasks like washing yourself or brushing your hair
- mood, making you more depressed, tearful or irritable
- social life or relationships, including with loved ones, friends and neighbours
- sense of self, particularly if you feel too tired for hobbies or your role in family life has changed
- independence and dignity, for example if you need help with personal care or managing your money and bills
- levels of pain, as it can be harder to cope with pain when you are very tired.
The effects of fatigue can be very distressing. Some people say they feel more and more frustrated as their fatigue gets worse. Others feel guilty about needing help with things like shopping, housework or personal care.
How can I manage my fatigue?
There are things that may help to manage your fatigue and reduce its impact on your daily life.
It’s a good idea to speak to your healthcare team. They can help you understand why you have fatigue, identify anything that makes it worse, and suggest things that could help. They may arrange for you to speak to a specialist, such as a physiotherapist or occupational therapist.
For many people, there is no quick or easy way to tackle fatigue. You may need to try a number of approaches to find the one that works for you. A combination of these is likely to work best.
Many people will not get back the energy they had before they were ill, but by making some changes are still able to do what is important to them and feel more alert.
Plan, prioritise and pace (the 3 Ps)
An important part of managing fatigue is ‘energy conservation’. This means thinking of your body’s fuel as something that is limited, using it wisely, and saving it when possible.
You may find it helpful to think of your energy levels like a battery. Some things use up energy and drain your battery quicker. Others things might help you to conserve your energy or even recharge your battery before it gets too low.
Your battery might be less effective than it used to be - it might be quicker to drain, and take longer to recharge.
Following the ‘3 Ps’ – plan, prioritise and pace – can help you to manage your energy levels and avoid an empty battery. The idea may seem obvious, but making a conscious effort to think about it could make a real difference.
Making things easier for yourself
There are lots of ways of getting the same things done, with less energy. The following information has tips for breaking up or sharing tasks and making things easier at home.
I want to make my own decisions, that’s a big thing for me. It’s hard to get to the wardrobe and get things out, but if someone shows me some different clothes, I can still choose what I wear and how I look that day. I’m still taking charge, but they’re doing the tiring bit.
Yvonne, living with advanced breast cancer and heart failure
Finding ways to relax and manage stress
Feeling stressed can make you feel more tired. Learning to relax and reduce your levels of stress is unlikely to get rid of your fatigue. But there will be one less thing adding to your fatigue and it may help you to sleep better.
The following ideas may help.
Talking therapies
It may help to talk with someone who can give specialist emotional support, such as a counsellor or psychologist. They can:
- listen to your concerns
- help you understand why you have fatigue
- suggest ways to manage your fatigue so that it affects your day-to-day life less
- help you to set realistic goals so that you feel less frustrated
- help you to accept what you can and cannot do
- support you to learn to live with your situation
A type of talking therapy called cognitive behavioural therapy (CBT) may be particularly helpful for managing fatigue. It could help you to think differently about your fatigue, feel mentally stronger and cope better with your situation. CBT may also help to improve your sleep.
Counselling and therapies such as CBT can also help if you have depression. There are links between depression and fatigue. People with depression often feel tired and low in energy, while people who are constantly tired can start to feel more depressed. This means that treatment for depression can sometimes help to manage fatigue.
Improving your sleep at night
You may feel that you spend too much time sleeping. But sleeping a lot, particularly during the day, is not the same as getting good-quality sleep.
If possible, try to follow these tips to help you sleep well at night:
Staying active (if you can)
There is evidence that keeping active may help to manage feelings of fatigue if you have advanced cancer. It may help you to manage the fatigue caused by other advanced illnesses, but we need more research on this.
The amount and type of activity you can do, if any, will depend on your own situation.
Some people can walk short distances or move about the house. Others may manage a few minutes of tai chi, yoga, or gentle leg stretches while sitting on a chair or bed.
A physiotherapist can work with you to develop a plan based on what you can and want to do. If you cannot leave your bed or move on your own, they can help by moving, stretching or massaging parts of your body. This can help to move blood around your body and work your muscles. It may also help you to feel more alert.
There is also movement involved in everyday tasks or interests that you enjoy doing. For example, light housework, daily personal care and gardening all involve activity. An occupational therapist can help you find ways to keep doing these things, safely, for as long as possible. Read more about working with an occupational therapist [XX internal anchor link to 'Who can I speak to about...'].
Remember not to push yourself too hard
Towards the end of your life, it is normal to become less and less active. Even small amounts of activity can leave you exhausted, and you may lose interest in doing things.
Even if your body lets you be active, the choice is yours. You should never feel guilty or try to push yourself if you want or need to rest.
Eating and drinking
As you approach the end of your life, your body starts to use food differently. You may want to eat less or choose different foods. It is probably best to eat what you want, when you want.
Some people find eating little and often helps them to eat more, but this does not work for everyone. Don’t make yourself eat if you are too sleepy or not hungry. You may struggle to swallow, digest and use the food properly and it is unlikely to help your fatigue.
Try to drink plenty of water if you can, or nutritious drinks such as fruit juice or milk. This will help to keep you hydrated, which may help your energy levels.
If you feel sick, you may find it easier to drink in small sips. It’s usually best to avoid caffeine, as this can make you dehydrated.
Speak to your healthcare team if you are worried about your appetite or losing weight.
Is there medication for fatigue?
People often want to know if they can take a medicine to treat fatigue or raise their energy levels. Unfortunately, medicines are unlikely to help fatigue when you have an advanced or terminal illness.
Talk to your healthcare team if you are interested in whether changing your medication might help your fatigue.
Who can I speak to about my fatigue?
Speak to your healthcare team if you are struggling with fatigue and low energy. You can talk to your GP, district or practice nurse, hospital team, or someone from your local palliative care or hospice service. They should be able to support you or refer you for specialist advice.
It may help to get support from the following professionals.
Who else can I talk to?
Remember to let your family and friends know how you are feeling. Talking about things can help in lots of ways:
- Sharing a problem can make it feel easier to manage
- Other people will understand more about what you can and cannot do
- It gives you a chance to let people know how they can help
- You can work together to come up with ways to make things easier
- It can help to avoid misunderstandings and feelings of frustration, guilt and helplessness, for both you and your loved ones
Unless someone has experienced fatigue, it is hard for them to understand how much it affects your daily life. If you are unsure how to start the conversation, you could show them this information and then ask if they have any questions about it.