Fatigue

Fatigue is extreme tiredness. Nearly all people living with a terminal illness will have fatigue at some point. Fatigue can be frustrating and upsetting and mean you are less able to carry out your usual activities. But you can make small changes to your daily routine which can improve your energy levels.

Fatigue is a persistent feeling of extreme tiredness, weakness or lack of energy. It’s different to normal tiredness as it’s not necessarily caused by doing lots of exercise or movement. And it’s not always relieved by rest or sleep.

People living with a terminal illness often describe fatigue as one of the most difficult symptoms to manage.

People sometimes say that having fatigue is like being ‘wiped out’, ‘hitting a brick wall’ or a feeling of ‘sudden crashing tiredness’.

Fatigue can affect all aspects of your life and can cause:

Fatigue can happen at unpredictable times, and it can mean you are less able to do the activities you enjoy. It can also affect relationships with those around you, as you might need more support.

Fatigue can trigger lots of emotions. You may feel guilty about not being able to do as much at work or at home as you used to. You may feel frustrated if you feel like you’re missing out on things, or angry if you cannot work out what’s causing your fatigue. It's very important to remember that having fatigue is not your fault.

There can be lots of causes of fatigue when you’re living with a terminal or life-limiting illness.

Sometimes, the exact cause can be difficult to pinpoint. Things that affect fatigue include:

If you think you have fatigue, speak to your doctor or nurse. They can look into what’s causing it and support you with ways to treat it.

You might find it hard to explain to other people what this type of overwhelming tiredness is like. And you might feel guilty about feeling so tired − and that you cannot do the things you want to do.  

But because fatigue is ‘invisible’, people may not know that you have it unless you tell them. If you can explain to others how you’re feeling, it can help them understand and think about how they can support you.  

You might want to tell people who can give you specific practical support (for example, your employer). Or you might want to share how you’re feeling with any family or friends, so they can understand what support you need.

You can explain to them that you do not have as much energy now as you used to. And that you need to use the energy you have for the things that are most important to you. It might help to tell them that fatigue is different from normal tiredness – resting more or being less active will not necessarily help. You could send them this page if you think it would be helpful.

It can also be an opportunity to ask for help if there are things you’re finding more difficult. This could be things like shopping, driving or housework.

Keeping a diary of your energy levels can help you spot if you’re more tired at a particular time of the day, or after doing certain activities. It’s called a fatigue diary. You can share it with your doctor or nurse. It can be helpful for them to see how fatigue is affecting you. 

You can also look back at your fatigue diary and then use this information to help you plan what you do in a week, using a fatigue planner. You might want to share the fatigue planner with people important to you so they can support you with your activities.

People often assume that nothing can be done to help fatigue. But there are professionals that can help you.

Speak to your GP, hospital doctor or hospice doctor about your fatigue. They can look into what’s causing the fatigue, prescribe medicines that may help, and recommend ways to manage it.

They might also refer you to other professionals who can help you:

If you’re not sure where to start but would like to talk to someone, contact
the free Marie Curie Support Line on 0800 090 2309 or email us at  support@mariecurie.org.uk

There are ways of doing things that can help you manage fatigue. It can help if you start thinking differently about how you do things and plan activities to make the most of your energy. 

You may find it helps to imagine that all the energy you have is stored in a battery. The battery only has a set amount of charge before it needs to be recharged. In the same way, you have a set amount of energy to do all the things you want to do. So, give yourself time to rest and recharge when you need to.  

The five Ps – prioritising, planning ahead, pacing yourself, positioning and permission – are a way of making the most of the energy you have.

If you do not have enough energy to do the things you used to do, think about what matters most to you and prioritise these things.

What’s most important is different for everyone. For some people it will be spending time with others like friends, family or children. For other people it may be very important to be able to work, or get outside into nature, or watch a sport, or keep up with a hobby. 

You could start by making a list of the things that you want to do. Then highlight the ones that matter most. Try to include things that you enjoy and can help you relax as well as work or things you need to do. 

Plan ahead by thinking about what you want to do in a week. Then spread activities across the week. Try to avoid having two busy days together. If you have a very busy day, plan a rest for the day after. And think about timing your activities in a day − so that you can rest before starting on something else. 

Some people like to use a diary to plan ahead (see Fatigue diary and planner above). Or you might want to note it on your phone or phone calendar. And having something to look back on can help you to plan activities for the times when you seem to have the most energy.   

If you’re not used to doing things more slowly, you may find this difficult. But try to take the time you need and pace yourself.  It’s also OK to ask for help if you need to. It’s important to try to listen to your body and understand your own limits. 

Doing things in a different way or in a different position, can save you energy. For example, sitting down to chop vegetables or sort out the washing uses less energy than doing them standing up. So, think about whether there are easier ways to do some things. 

Give yourself permission to do things differently. This might mean asking for help with things you used to do by yourself. Or it might mean taking rests and having a nap. 

Even if you plan ahead, you might not always have enough energy to do the things you planned to do. So, be kind to yourself and try not to worry if you do not get through what you wanted to that day.

Your doctors or nurses might be able to identify and treat anything that may cause fatigue. For example, blood transfusions can be helpful if you have anaemia.

Occasionally your doctor will suggest medicines, such as steroids, to improve appetite and energy levels. They may also review your current medicines to see if any could be making your fatigue worse.

Regular physical activity enhances energy levels and can improve quality of sleep at night.

Try to stay as active as you can without overdoing it. This might seem like an odd thing to say when it takes energy to do exercise, but being active can give you more energy. And using your muscles can help to keep them stronger which can help you to maintain your independence.

These are things to be aware of if you’re doing physical activity: 

Physical activity could be things like walking, gardening or swimming. But simply moving your arms and legs in bed or in a chair can also be helpful. If possible, try to do something that you enjoy. A physiotherapist can help you find the best activities for you. 

In some areas of the UK, doctors can prescribe exercises classes. They might be held at a local gym or at the hospital. Some hospices also run sessions where you can use the gym. Ask your doctor or physiotherapist if there are exercise classes you can join in your area. 

Getting a good night’s sleep can help to boost your energy. But we know it can be difficult to get enough sleep when you’re living with a terminal illness. It could be because you’re worried, you cannot do as much in the day, or because you have symptoms that are making it more difficult to sleep. 

You may find that these tips can help you to sleep better: 

If being worried or having too many thoughts is making it harder to sleep, it can help to keep a pen and paper beside your bed. Write down the things you’re thinking or worrying about before you try to go to sleep, or you can write them down if you wake up in the night. Just writing worries down can help calm your mind and you may be able to deal with some things in the morning.

Food is fuel for your body and helps to maintain energy levels. But having an illness can affect your appetite. If you’re finding it difficult to eat, speak to your doctor or nurse. They can refer you to a dietitian. 

If you find eating tiring, try having smaller portions and snacks throughout the day. Try to make the most of times when you feel hungry, or when your appetite is best. And if your taste changes, try different foods and eat the food that taste best to you now.

You might find you do not have the energy to prepare meals. If there’s a friend or family member who you can ask to help, that could be a way that they can support you. You can also ask your doctor or social worker about getting healthy meals delivered to your home.

Finding ways to relax can help you to manage fatigue. Try to find time to relax every day.  

You might find it helps to: 

People can find meditation apps like Headspace or Calm helpful for relaxation and to support a better night’s sleep. Some of these apps start with a free trial but you may need to pay for them later.

Some people find that complementary therapies like acupuncture, reiki or massage make them feel more relaxed, and this can help to manage fatigue. l Speak to your doctor or nurse before having complementary therapy. They can advise you on the safety of different types of therapy. Some complementary therapies might not be suitable or safe for you, depending on your health condition and treatment.

Living with fatigue can be difficult. It might make you feel depressed, frustrated, anxious or guilty. If you’re finding it hard to cope, try talking to someone you trust about how you’re feeling. This could be a friend, family member or your doctor or nurse.  

You can also contact our free Marie Curie Support Line on 0800 090 2309* for practical information and emotional support. Or you can email us at support@mariecurie.org.uk 

Your doctor or nurse can prescribe medicines to help, and they can refer you to another professional for more support. A counsellor or psychologist can help you to understand and work through your feelings.

Counselling is a talking therapy that is sometimes free at hospices, hospitals or GP surgeries. If this is something you want to try, ask your doctor or nurse. They can let you know what talking therapies are available locally and can help you decide which treatment is best for you. For more information about free counselling services speak to your GP. 

You may also be able to get private counselling, which you need to pay for. For more information, ask your doctor or look for a qualified counsellor near you.

Having depression or anxiety can also make your fatigue harder to manage. Getting support for depression and anxiety may help to improve your fatigue too.

People can feel more fatigued as their illness progresses and they approach the end of their life. You can still use all the techniques that have helped before such as pacing yourself and planning what you do. But the things that are most important to you might change and you might want to prioritise different things. 

Towards the end of life, everyday activities may become too tiring to do. Needing to sleep or rest more than usual is normal.  

You can also contact the free Marie Curie Support Line on 0800 090 2309*. Or email us at  support@mariecurie.org.uk

If your friend or family member has fatigue, there are things you can do to support them: 

Supporting someone with a terminal illness can be rewarding but it can also be very challenging. If you need extra support, speak to your GP about how you’re feeling. They can support you with your own health, refer you to a social worker or recommend support groups in your local area.  

You can also call the free Marie Curie Support Line on 0800 090 2309. Or email us at support@mariecurie.org.uk.