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Cancer-related fatigue

Cancer-related fatigue is a type of extreme tiredness that can be physical, mental and emotional. It affects most people who have cancer.

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What is cancer-related fatigue?

What causes cancer-related fatigue?

How is cancer-related fatigue diagnosed?

What might help with cancer-related fatigue?

Frequently asked questions about fatigue and lymphoma

What is cancer-related fatigue?

Cancer-related fatigue is exhaustion that’s at a much higher level than would usually be expected. It can be physical, emotional or mental. You might feel very tired after doing quite little.

Fatigue can affect different areas of your life. For example, you might:

  • find that there is a difference in your thinking processes, such as memory and concentration
  • feel low and irritable
  • not be able to do all the activities you usually would 
  • need to take time out of work or education, or change your hours of work or study, if you can
  • feel that your relationships are impacted.

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What causes cancer-related fatigue?

It is difficult to say for certain what the cause of cancer-related fatigue is. This is because there are many factors that could affect whether you experience it. These include:

  • your age
  • having a higher stage (3 or 4) of lymphoma compared to lower stage (stage 1 or 2) lymphoma
  • your treatment – for example, many people who are treated with chemotherapy or radiotherapy say that they feel fatigued at some point during or after their treatment
  • taking strong painkillers, such as opioids
  • having, or recovering from, an infection
  • heightened stress and anxiety
  • low mood
  • having another condition.

Steroid treatment can also affect energy levels. Some people have more energy while they are taking them. However, you might feel more tired once you stop taking them. Your medical team will give you advice to help you lower your dose gradually.

Having lymphoma as well as another condition

If you have lymphoma as well as another condition that affects your energy levels, you might be more at risk of developing fatigue. In some cases, your lymphoma medical team works with other relevant health professionals. Together they can coordinate your treatment and care to help lower fatigue.

Below are some conditions that could affect your energy levels. Sometimes, medications for these can also have an effect.

You might also be interested in our information about treatment for people with lymphoma and other health conditions.

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How is cancer-related fatigue diagnosed?

If you think you might be experiencing cancer-related fatigue, speak to your medical team or your GP.

Your doctor will talk to you about your symptoms and how they’re affecting you. They might also use a questionnaire to find out about how it affects you. Some hospitals use a system called electronic patient reporting outcome mesaures (ePROMs). This is a set of questions to help assess your symptoms and any concerns you have, including fatigue. 

Fatigue is most commonly assessed around the time of diagnosis or during treatment. However, it can happen months or years after treatment, as a late effect of treatment. 

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What might help with cancer-related fatigue?

Although there are no specific treatments for fatigue, there are things that can help. Speak to your medical team for advice and to find out how they can support you, both practically and emotionally. Your medical team or GP can discuss factors that might be making your fatigue worse and help you to address these. In some cases, this includes making changes to your lymphoma treatment

You might also be interested in our tips to help manage fatigue, offered by members of our closed Facebook community.

Healthy lifestyle

Some of the general things you can consider to help manage fatigue include:

  • Eating a healthy diet that gives you enough energy and nutrients. If you have difficulties with eating (for example, as a side effect of treatment), talk to your clinical nurse specialist for advice.
  • Taking regular exercise, which can help in various ways, such as by strengthening your muscles. Physical activity can also help to improve things that can add to your fatigue, such as pain, emotional wellbeing and quality of sleep. It might also have a positive effect on immunity. Some people find it particularly helpful to take physical exercise outside.

I found the fatigue from my chemotherapy to be cumulative; the more infusions I had the more exhausted and washed out I felt. The physio emphasised the importance of trying to stay active to combat fatigue. This felt counterintuitive as the fatigue made me feel capable of doing very little. I found, however, that when I managed to go for a short walk or do some stretches (even in bed), I felt more energised for the rest of the day. Going outside for fresh air also really helped me feel more relaxed.

Mila, affected by cancer-related fatigue

Read more about Mila's experience of Hodgkin lymphoma.

Planning your activities

Think about how to manage your day-to-day activities to help save your energy for things you need and want to do. You might also need to think about work or study as part of this.

Some people think of their energy as a type of ‘storage’ or bank. Times of rest add to supplies or funds, while tasks and activities that use up energy are like making withdrawals. 

Where possible, you could ask family and friends for help. This way, you can save your energy for the tasks that only you can do, or the ones you most want to do. It’s important, too, to keep up with fun and enjoyable parts of your life, such as with hobbies and spending time with family and friends.

You could also think about any devices or equipment you could use to make tasks easier or quicker. For example, electric tin openers, having your food shopping delivered and using a stool to sit while showering.

Using a fatigue diary

A fatigue diary is a way of keeping track of your energy levels to help see if there are any patterns. This can help you to see if there are things that make your fatigue better or worse. 

Using a fatigue diary might make it possible to plan some of your activities for times when your energy is higher. Be sure to give time for rest between activities too. There’s no set amount of time you should keep a fatigue diary for, but often a couple of weeks is enough.

Tips for keeping a fatigue diary:

  • If you are having treatment, mark the days that you have treatment, for example, using a cross.
  • Use a colour-coded system to mark your level of activity (including rest and sleep) throughout the day.

You can download a copy of our fatigue diary on our website. There are also some apps available to help reduce fatigue and exercises to help improve your energy levels. 

Consider relaxation techniques and complementary therapies, for example mindfulness meditationacupunctureyoga or massage – speak to a member of your medical team before trying one, to check it’s safe for you.

On Macmillan Cancer Support’s website, you can also access a resource called RESTORE. This gives information about things you can do to help you cope with cancer-related fatigue.

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Frequently asked questions about fatigue and lymphoma

Below are some questions people often ask about cancer-related fatigue and lymphoma. Speak to your medical team for advice specific to your situation.

Will I experience cancer-related fatigue?

Most people who have cancer experience fatigue at some point. It’s a common symptom in people with lymphoma and other blood cancers. It’s not possible to predict if and how you’ll be affected by cancer-related fatigue. However, there are certain factors that can increase the risk.

Your doctor should also talk to you about any difficulties you are experiencing. This includes supporting you to manage fatigue in your day-to-day life.

How long does cancer-related fatigue last?

For many people, cancer-related fatigue gets better over time. However, for some people, the effects last much longer. 

How can I manage work or study?

At least for a little while, many people affected by fatigue stop or lower the number of hours they work or study during or after treatment. 

If you work, depending on your situation, some of the other things that you might consider include:

  • agreeing with your employer to work from home for some or all of your hours, if you are employed
  • delegating some of your tasks to colleagues for a while
  • finding out what financial support is available to you if you are self-employed and need to take some time out of work. 

If you are in education, talk to your school, college or university about your situation. Find out how they can support you with your studies or training. If you are at school, you might also be entitled to support from your local council to help reduce the impact of your lymphoma on your education.

You could also speak to your GP or clinical nurse specialist about the possibility of a referral to an occupational therapist (OT). They could help by suggesting and making any adjustments to your work or educational environment and pattern, to help maximise your energy. They could also support you in helping your employers or teachers understand the impact of cancer on your work and studies.

Is it helpful to take naps?

During treatment, a short nap might help give your body the additional rest it needs. However, with long-term cancer-related fatigue, sleeping during the day could disrupt your night-time sleep pattern. In this case, a rest without sleeping might be better.

Are there any supplements I can take to help with my fatigue?

If you are able to, the general guidance is to eat a balanced diet. If you have difficulties eating, you might be advised by a member of your medical team to take an additional multivitamin and mineral supplement

It’s important to check with a member of your medical team before taking supplements. Some are harmful if taken in high doses and can react with other medications and treatment for lymphoma. 

How can I explain my fatigue to friends and family?

Some people feel upset or frustrated if those around them don’t seem to appreciate how exhausted they are. Fatigue can be difficult to understand for people who have never experienced it. 

You could use comparisons to help. For example, you could describe your energy levels as a bank with a limited amount of money to spend, or a car with a limited amount of fuel to use. Christine Miserandino describes her experience of illness-related fatigue, using spoons to represent units of energy where there are only a limited number of spoons available – you could show them this.

How can I cope with the emotional and psychological impact of fatigue?

Fatigue can have a real impact on how you feel and think. Many people struggle with the emotional effects of living with fatigue. Speak to your clinical nurse specialist or GP about how you’re feeling.

You could consider getting support from a talking therapist, such as a counsellor or psychologist. Talking therapists work in different ways to help people with difficult thoughts and feelings. Cognitive behavioural therapy (CBT) is one type of talking therapy. Often, it involves changing the way you think about things to help you cope more easily with your situation. Sometimes, it includes addressing other difficulties that might be connected to the fatigue, such as sleep difficulties and explaining your fatigue to those around you.

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Further reading