What is fatigue?

Fatigue is a feeling of extreme physical or mental tiredness, or both. Most of us feel tired after a long day, but if you have a long-term medical condition such as cancer you may experience a tiredness that’s quite different in quality and intensity and which doesn’t always improve after rest.

What are the features of fatigue?

Common features of fatigue include:

  • your body and limbs feeling heavy and difficult to move
  • flu-like feelings of exhaustion
  • the feeling that your energy has drained away.

Many people also report mental fatigue, when they can’t think straight and lose their concentration or motivation. Some patients refer to this as ‘brain fog’. Some people report an emotional fatigue which makes them irritable, down or tearful. This fatigue isn’t the same as chronic fatigue syndrome, it’s a symptom related to cancer, and you can learn to manage it successfully.

Attacks of fatigue may occur at any time of the day. You may experience it when you wake up, so you don’t feel refreshed from sleep, or it may come on when you’re physically busy or concentrating a lot. For many people, fatigue seems to have no clear cause and happens without warning. It may last anywhere from an hour to the whole day and could continue over several days or weeks at a time, although this is less common.

Fatigue can have a major impact on your life. It can force you to stop what you’re doing and rest, or make you change your plans. This can have a big effect on your ability to run your life or do the things that we all take for granted.

When fatigue is severe, it can lead to feelings of complete exhaustion, or ‘wipe-out’, when you have to sit or lie down to try to recover. This may be made worse by a lack of understanding from others about how much it affects you – show this information to friends and family to help you explain your experiences.

How is fatigue measured?

There’s no direct way of measuring fatigue, but your rheumatology team or GP can assess how it’s affecting your life. You may be given a questionnaire to report the extent and effects of fatigue, which can guide your doctors to self-help strategies that you might be able to use. The questionnaire might ask you to assess:

  • how severe the fatigue is
  • the level of distress it causes you
  • your physical and mental tiredness
  • the impact on your daily life
  • how much you feel able to cope 

What causes fatigue?

The following factors may contribute to fatigue in cancer:

Cancer Treatment

Cancer treatment such as chemotherapy, radiotherapy and surgery can be a cause of the fatigue.

Active disease

Chemicals called cytokines, which are found in inflamed tissues, are similar to chemicals released in viral illnesses such as colds and flu, and they can cause extreme fatigue.

Anaemia sometimes occurs with inflammation, and this can also cause fatigue.

Long-term conditions

Diabetes and thyroid problems can cause fatigue.

Drug treatment

Some drugs used to treat cancer-related pain may cause drowsiness, loss of concentration and light-headedness.

Pain

Pain is a major symptom of most types of cancer and it can wear you down, especially if it’s constant.

Muscle weakness

Inactivity can cause your muscles to become weak, which may contribute to fatigue because it’ll take more effort to make your joints work. When you’re less physically active you can become unfit, and this can also cause fatigue.

Overdoing it

Often people will keep going even after they know they should stop (for example when doing a physically challenging activity such as gardening), which can cause exhaustion for hours or days afterwards. This is called ‘boom and bust’ behaviour.

Stress or anxiety

Your body’s natural reaction to deal with stress is to release a hormone called adrenaline, which prepares your body to deal with a crisis (your muscles, heart and lungs work harder and your mind becomes very alert).

This adrenaline release usually only lasts until the crisis passes, but if the stress continues (for example because of constant pain or anxiety about the future) and your body carries on releasing adrenaline, it can cause physical and mental exhaustion.

Sleep disturbance

If your sleep is disturbed due to pain, anxiety or stress, it can cause fatigue. Too much sleep can also make you fatigued, particularly going back to sleep in the day.

Click the link to view our factsheet on sleep - https://www.opa.org.uk/edit/files/sleep.pdf

Low mood or depression

Sometimes people with a long-term condition feel down and uncertain about the future. This can lead to low mood or perhaps depression, which reduce energy or cause the feeling of fatigue.

Poor diet or hunger

A poor diet or missing meals may result in a lack of energy.

It’s likely that no single factor causes fatigue but that several combine and interact with each other. The combination may be different for everybody and vary each time.

For example, your fatigue might be driven by inflammation, which also causes pain and disturbed sleep, but at another time you might be fatigued largely because of stress from a family crisis, which means you overdo things as you deal with it and end up missing meals.

How can I help myself?

There are many things you can do to reduce the impact of fatigue. Start by working out the possible causes then talk to your healthcare team so they can look at different ways to help you manage it.

If you think your drug treatment may be causing your fatigue, talk with your doctor about reviewing your treatment. They can also look for signs of other conditions that may be causing fatigue, and check your inflammation or anaemia levels.

If you have signs of active inflammation, your doctor may alter your medication to improve your symptoms, which will help to ease fatigue. However, it’s unusual to make major changes to drug treatments to control fatigue unless there’s significant evidence of inflammation as well.

No specific drugs can treat cancer-related fatigue, but there are many ways that you can reduce the impact of fatigue on your life without medication. Changing behaviours like this does work, but most of us need support to do it, so discuss this information with your GP or rheumatology team, who should be able to help you work through it (particularly your occupational therapist, rheumatology nurse specialist or physiotherapist).

Try combining some of the following tips on self-management.

The four Ps

When people feel fatigued, they often spend their energy on work and chores and give up things that they enjoy. Use the four ‘P’s’ to help you to conserve your energy, work out what’s important to you and give you time for things you want to do:

Problem solving

Often it’s not what you do, it’s the way that you do it that makes a difference. Look at your daily routine. Start to notice if you spend all morning doing the same type of repetitive tasks or if your working position causes you pain or discomfort. Perhaps your body complains when you do certain tasks or you get very tired by the afternoon.

If a task causes you a problem, ask yourself how you can do it differently.

Planning

Make a plan of the things you want to achieve during the day or over the week. Plan how and when you’re going to do certain tasks, and spread them out wherever possible over a number of days.

Make sure that demanding jobs are spaced out during each day or week.

Prioritising

If you list the tasks you need to do, you can put them in order of importance and decide what tasks you can remove, delay or hand over. Ask yourself the following:

  • Does this need to be done today?
  • Does it need to be done at all?
  • Do I have to do it, or can someone else?
  • Can I get someone to help me with parts of the task? 

Pacing

Break tasks down into achievable parts and spread them throughout the day or week, and take short, regular rest breaks. Change your position and activity regularly.

Don’t use exhaustion as a guide for when to stop – change your task or rest before you start to feel tired.

You may have found that fatigue has stopped you doing things you really want to, so it’s worth spending some time thinking what you could achieve that would make you feel good (for example socialising with friends or getting back into a hobby).

Setting yourself small, weekly goals can help you build up to what you really want to do as you start managing your fatigue. You’re much more likely to meet small, specific goals than vague ones or ones that aim too high. Your occupational therapist or rheumatology nurse specialist may be able to help you set and review goals.

Monitor your energy output and fatigue

It can be difficult to assess how much energy you use on different tasks during the day, so it may be useful to monitor it and create a visual picture to help you see links with your fatigue. Create a chart to record your activities, when you do them, how long they take and the energy levels you use.

Mark the activity as red when it’s a high-energy task. High energy is whatever you consider it to be – it could be physical (washing up, gardening), mental (office work) or emotional (family meetings).

Colour the activity yellow if it’s low energy. This is when you’re doing something which isn’t using a lot of energy.

Use green for rest time, for example when you’re reading or watching TV. During this time you’ll have a chance for recovery and won’t be using much energy.

Use blue for sleep.

When your fatigue is very noticeable (for example, you had to stop what you were doing, sit down or go to bed to rest), put a cross through the activity.

At the end of a week, look back at your diary and ask yourself these questions:

  • Are there episodes when you were exhausted?
  • Are these related to high-energy activities (boom and bust)?
  • Are there long blocks of high-energy activity with no breaks?
  • Is your sleep disturbed?
  • Are you sleeping in the day?
  • Is there enough time for enjoyment and recovery?

Use the information to give you a better idea of when you need to pace yourself and to help you to prioritise your time. Try planning the next few weeks and review your progress as you go. Your rheumatology nurse specialist or occupational therapist may be able to give you charts and work through the process with you.

Talk to family and friends about fatigue

For many people, fatigue is a major symptom of their cancer – it’s just as common and as troublesome as pain. But because it’s an invisible symptom, many people with fatigue often don’t talk about it because they think that others won’t understand.

This can cause anger or frustration over the impact fatigue has on their lives and the lack of help and understanding from others, which can make the fatigue worse.

Family and friends can help you manage your fatigue, but they won’t know about it unless you tell them. Sharing the effects of fatigue with others helps them understand why you don’t always feel able to join in with activities or have to take more time to rest. Direct them to this website to help them understand what fatigue is, how it can affect you and how seriously your healthcare team take it.

It can also be useful to explain fatigue to your work colleagues. This will help them to understand that you sometimes need to take more time over tasks. It might help with decisions on working patterns or adjustments to equipment to make fatigue more manageable. Speak to an occupational therapist if you need more information.

Your local Jobcentre Plus can also put you in touch with Disability Employment Advisors, who can arrange work assessments. They can advise you on the way you work and on equipment that may help you to do your job more easily.

Learn to say no

It can be hard to say no when people invite you out or ask you to do something for them, even if you know that it’ll leave you feeling exhausted. People with fatigue tend to keep agreeing to things because they feel they should or they think their own needs aren’t important. Explain about your fatigue and what it would mean for you to say yes.

Saying no doesn’t have to mean you don’t take on any of the activity at all. Could you use the pacing strategies and only take on part of the request? For example, you could agree to go shopping but only for half a day. Discussing your own health needs isn’t being aggressive, it’s simply helping people understand your situation and being confident about how much you can reasonably do.

Learning to say no is an important step towards self-managing your fatigue and will help you in achieving daily goals. Most people will understand if you explain that you want to do something in a different way so you can save your energy for the good things in life.

Join a support group

Aside from talking to friends and family about their fatigue, many people find that joining a self-help group is useful. You can talk about how you’re getting on with your fatigue, and you can learn from other people’s experiences. Hearing from someone in the same situation as you can be really helpful in enabling you to become more confident in your decisions.

There may be local self-help groups for your particular condition, so ask your rheumatology team. You should also talk to your consultant and medical team.

Details for our support groups are below:

https://www.opa.org.uk/support-near-you.html

https://www.opa.org.uk/affiliated-groups.html

Increase your physical activity

Arthritis can reduce physical activity because of the impacts of joint pain, muscle weakness and fatigue. Although doing too much can increase fatigue, a lack of exercise reduces fitness levels and contributes to muscle weakness, and it therefore can be a cause as well as a result of fatigue.

The good news is that fitness can be improved with the right sort of exercise. Start slowly, perhaps just a 5–10 minute walk, then gradually increase the amount of exercise or activity. Generally, the best way to develop your fitness is little and often. As you get fitter you’ll feel an increase in well-being, strength and energy.

Your physiotherapist may be able to help with a fitness programme or advice on exercises, or refer you to a gym or a health walks programme run by local authorities. You can take painkillers before you exercise to help prevent discomfort and allow you to continue with your activity.

You can also gradually increase your daily activities, for example housework and gardening. An occupational therapist can work with you to set specific goals and help you tailor a graded activity programme to reach these goals. 

Deal with stress or anxiety to help fatigue

At times, all of us have things going on in our lives that we find stressful. It can help to tackle stress as soon as possible.

Think about practical ways to reduce stress

Are there practical things you can do to reduce stress? For example, if you have a big task that’s bothering you, can you break it down and tackle a small bit each day? If it’s something you’ve been worrying about, can you take a deep breath and find the energy to do it? Sometimes our fears make things seem worse than they really are.

Reduce your physical reaction to stress

Reduce your physical reaction to stress through relaxation so that you feel more able to cope with things you find stressful. Take time for yourself – read a book or have a bath, for example.

Use relaxation techniques

Using relaxation techniques may also help to ease stress. There are many relaxation, meditation or mindfulness tapes, CDs and MP3 downloads available, or your occupational therapist or rheumatology nurse specialist may be able to offer you some.

These techniques vary and can last from 5–45 minutes. They can be very effective if you practise them regularly. Your occupational therapist may also be able to advise about other relaxation techniques. 

Find support for low mood to help fatigue

You may find that your fatigue makes you feel low or even depressed. It often helps to talk about negative feelings and thoughts, so it could be useful to speak to your GP or rheumatology team, or your friends and family. Support groups are also available – talk to your rheumatology team about organisations in your area.

There are several kinds of support for low mood, such as talking therapies (available as individual or group session, in person or over the internet) or a short course of drug treatment, some of which not only help with low mood but may also ease pain and improve sleep.

The first step is finding out what help or self-help might suit you best, so talk with your GP.

Get a good night's sleep

  • Because poor sleep can cause fatigue, it’s important that you get a good night's rest. Try the following tips to improve your sleep:
  • Aim to wind down in the hour before you go to bed – a warm bath might help you relax and reduce discomfort from tired muscles.
  • Make a note early in the evening of things you’ve achieved during the day and what you need to do the following day. This can help prevent you worrying about things in the night. It may also be useful to keep a pen and notepad next to the bed so you can jot things down if you think you may not remember them in the morning.
  • Reduce the amount of caffeine you drink (from tea, coffee or cola) and avoid alcohol after early evening.
  • If you have pain, take a simple painkiller like paracetamol before you go to bed. Try to organise it so that you could take another dose if the pain wakes you in the night. Ask your doctor about steroid injections if a particular joint is causing discomfort, or speak to a hand therapist about wearing splints to support your joints in the night.
  • Look at your sleep environment – is the room too hot, light or noisy? Are your mattress, pillow and duvet/blankets comfortable?
  • Try to remove as many disturbances as possible (such as a ticking clock) to help you to settle down to sleep more easily. Removing clocks from the bedroom can also reduce the temptation of checking the time if you wake up during the night.

There’s no recommended number of hours sleep – some people need 8–9 hours and others only 5–6 hours. Sleeping too much can also cause fatigue. Keep an activity chart to see if you have a regular sleep pattern.

Late nights followed by late mornings, or taking a nap in the day, can upset the body’s natural day/night hormonal and sleep patterns. Try to develop a regular bedtime and waking time and avoid lie-ins. It may take several weeks to get into this routine, but it’ll help as it restores the body’s natural sleep cycle.

Click the link to view our factsheet on sleep - https://www.opa.org.uk/edit/files/sleep.pdf

Eat a healthy diet

Eating a well-balanced diet will help to provide all the nutrients you need for general well-being and energy. Try to eat regular meals to keep your energy levels up.

You can order the OPA recipe book and 'What can i eat now?' DVD on the online shop (links below)

https://www.opa.org.uk/products/opa-recipes-for-when-food-is-a-problem.html

https://www.opa.org.uk/products/what-can-i-eat-now-dvd.html

This information is from Versus Arthritis - https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-fatigue/

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