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Introduction

Fatigue is a very common symptom for people living with kidney disease, with approximately 70% of people reporting fatigue and up to 25% reporting severe symptoms. It is often poorly controlled, can cause significant distress and can have very negative impacts on people’s lives. 

Fatigue cannot be cured, but with the right knowledge and tools, it can be managed better. This information pack was created to provide you with information about kidney disease-related fatigue and some practical ways to manage it. You can also speak to healthcare professionals involved in your care, particularly an Occupational Therapist or Physiotherapist, who may be able to provide additional support.

Quotes

“Fatigue is completely normal as a renal patient, it can be overwhelming both physically and emotionally. It has taken me a long time to come to terms with this.
Embracing my new normal is a journey that changes daily, listening to your body and quieting your mind can be tricky but is vital for my own sanity and peace of mind”

-Emma, lived experience with HD, PD and transplant recipient

“In my professional life, I was ridiculously busy, but kept going by force of will. Since my kidneys failed, I can no longer do this - the level of tiredness is at such an intense level. You keep on trying, but it just makes things worse. You have to learn to accept your relatively low level of resilience and recognise that mental work is just as tiring as physical. It took me 2 years to reach this understanding.”

Chris (HD,HHD,TX)

What is fatigue? 

Fatigue is a feeling of extreme tiredness or exhaustion that is not improved by sleep or rest and not caused purely by exercise. People have described it as being “worn out” or having “run out of battery,” and symptoms can be physical, mental and emotional. 

Fatigue can mean different things to different people – everyone's experience of it and how it impacts them is unique. Therefore, it's important to really understand your own fatigue, how it impacts you, and what techniques work best for you to manage it. 

“Don’t measure yourself using someone else’s ruler”

-Emma, lived experience with HD, PD and transplant recipient

Causes of fatigue? 

There are many reasons why you might be experiencing fatigue, including: 

• The disease itself (renal disease)

• Anaemia (less oxygen being carried through blood = feeling tired/ weak)

• Treatment and medications (e.g. dialysis)

• Weak muscles / poor strength

• Pain

• Infection

• Reduced heart function / heart disease

• Depression / anxiety

• Insomnia / difficulty sleeping / poor sleep

• Not doing much – minimal activity

• Lack of social support

• Other health conditions 

The National Kidney Federation has leaflets on many of these topics if you would like more information at https://www.kidney.org.uk

What can trigger fatigue?  

Different activities use up different types of energy, and not everyone becomes fatigued from the same things. Here are some examples of what could trigger fatigue: 

Physical activities

This can include any sort of physical movement – from dressing or washing the dishes, to walking to the store or exercising. 

Cognitive/Mental activities

This is anything that demands mental/thinking energy from you. Examples of this can include managing your finances, life admin, reading, certain jobs or work, responding to emails, doing puzzles/crosswords and problem-solving. 

Emotions

Emotions can take up a lot of energy and at times leave people feeling very drained. Some examples of this include an argument with a loved one, feeling an extreme emotion (happy, sad, angry, etc.), bereavement/loss, a difficult conversation, anxiety and/or stress.  

Social Activities

Managing a social life and keeping in touch with those we care about is an important part of many people’s lives and can help with our mental health, but it can also use up a lot of our energy. Examples include family visits, events such as get-togethers, weddings or parties, speaking to people (whether on the phone or in person), going out / travelling to meet up with people, responding to text messages or commenting on social media, video calls (including setting up and trying to navigate technology), community groups and crowded places.

 

It is important to note that activities often have several demands – for example, going to a large family gathering may be both physically, emotionally and socially fatiguing. As well, the same activity may not result in fatigue for everyone. Managing your finances may not be cognitively demanding for one person, causing no fatigue, but may be extremely stressful and difficult for another and result in significant fatigue. 

Because the way fatigue impacts people varies so much, it is important to understand how your daily activities impact you so that you can make the necessary changes to improve your energy and manage your fatigue.

Impacts of fatigue

Fatigue can have many negative impacts on people’s health and well-being. It often leads to people not doing the things that they would like to do, increased dependence on others and lower quality of life. Here are a few of the ways in which fatigue may impact someone:

Cycles of activity

Fatigue levels can vary depending on the time of day, from day to day, and even week to week, and this can often result in detrimental cycles of activity which worsen fatigue. This can have long-term impacts on your ability to do things and your mental well-being. 

It is important to be aware of your own activity patterns and cycles so that you can start to make positive changes towards more productive ones which will improve your fatigue.

Cycle of inactivity

A common cycle with fatigue is a cycle of inactivity. This is where you are feeling fatigued/tired, and as a result, you start to do less. Doing less results in muscle loss and decreased strength. Having less strength makes it more difficult to do things you used to be able to do, so when you attempt to do these activities again, you are even more tired and exhausted.  More fatigue leads to more rest, and the cycle repeats itself.

Boom and bust cycle

A very common activity pattern is called the boom-and-bust cycle. 

This is where your energy levels are good, or better than they have been, so you may do things that you want to do that you normally don't have lots of energy for – this could be a physical, mental or social task. 

As you are doing this task, there may start to be some early warning signs of fatigue, which is your body signalling to you that you have done too much and are starting to come fatigued - but many people ignore these or don’t recognise them. 

It is easy to want to keep going, as you may want to get things done or feel good that you’re doing something you used to do again.  

At some point, however, your body says enough, and you are forced to stop – which leads to a period of enforced rest. It is enforced because you have no other choice than to rest. The fatigue might also be delayed – you might not feel the full effects of fatigue until later that day or even the next. This period of enforced rest can last for hours, days, or even weeks before you feel better again. With time, you recover, but the cycle often repeats itself. 

This can have negative long-term impacts both physically and mentally. The time spent in a period of enforced rest is often much longer than the time spent doing the activity itself, before the early warning signs started. Enforced rest leads to your muscles and body not being used, meaning you will lose strength and fitness.

Over time, this leads to a decline in your ability to do things as well as you used to. It can also have a negative impact on your mental health, as you may start to lose confidence and a sense of control. It is common in these situations to feel anxious or worried, withdraw from certain social situations, become more isolated and/or lower in mood.

The Goal: Productive Activity Cycle

The Goal: Productive Activity Cycle 

A productive activity cycle is when periods of activity and periods of rest are more balanced. Knowing what your early warning signs of fatigue are helps you to be able to stop activities before you have done too much, so that you are not pushed into enforced rest. Stopping at the right time can be difficult, and sometimes feels like a loss, particularly if it a good day for you. However, it is a long-term gain, as over time you are more likely to have your productivity remain the same or even improve; if you continue with unhelpful activity patterns, over time your productivity will get worse and worse.

I live with fatigue what can I do?

Unfortunately, there is no “cure” for fatigue. However, good management can help reduce the impact of fatigue on health and well-being.   

Learning to live with fatigue is not easy! It takes time to understand and make these changes to our life, and there is no perfect solution – it is about learning how your fatigue impacts you, what your triggers and early warning signs are, what matters most to you, and then trying out different strategies and adapting as you go along until you find a good routine and system which works best for you.  

A lot of fatigue management is about finding stability and a predictability in an understanding of what your energy looks like day-to-day and what your energy limitations are.   

The fatigue management “toolbox” provides several practical ways to manage your fatigue and energy. Good fatigue management requires changes to your lifestyle and some trial and error, as you may find that some things are more helpful than others. It can be useful to explore a variety of techniques from this toolbox over a period to notice any significant changes.  

Fatigue management toolbox

Fatigue Diary 

A fatigue diary often recommended as a starting point when looking at how to better manage your fatigue. There are many different fatigue diaries available online, but the main idea is to record your fatigue throughout the day by listing what you are doing, at what time, and some measurement of your fatigue. Doing so can help you understand your habits and triggers.   

It is most effective when you complete at least one week of recording your activities and fatigue levels so that you can see the bigger picture.   

You may also wish to record your activities and fatigue levels in a different way – you want to be able to build a picture of what your energy levels are like during and after various activities, and if there are any patterns or trends in your daily life. It can also be a good way to track positive changes to your fatigue and show what is working well with your fatigue management. 

Once you have recorded your activity, look back at it and think: 

  • Where do you spend your energy?  
  • Are there any predictable patterns? E.g. time of day that you always crash, or after a certain activity, time or activity where you have more energy, etc.? 
  • Do other symptoms flare up at the same time? 
  • What does a good day look like? What are the successes? 
  • What does a bad day look like?  
  • Do you have any early warning signs that you are becoming fatigued? 

The 4 Ps – Pacing, Prioritising, Planning and Positioning 

The 4 Ps are a central element of fatigue management. It aims to enable you to get the most out of your energy without triggering symptom exacerbation. It can be really challenging to do and find the balance of, however when it is done well, it should reduce symptom burden and give you back time in your day as it ideally reduces the amount of time you require to recover

  • Pacing: Pacing is a way to help control how you use your energy. It means taking a set amount of rest for a set amount of time doing an activity – for example, 30 minutes of rest / recovery for every 1 hour of activity. This can help avoid overexertion when done right. Sometimes people use a timer or apps such as Pomodoro to help remind them to take breaks.   

When pacing, think about TIME USE (the amount of time you are doing something for), TEMPO (at what pace you are doing the activity) and TEMPORALITY (when and where). Try to avoid a “chunk” too big as this leads to the boom and must cycle and also be aware of early warning signs – symptoms should ultimately guide your activity.  

  • Prioritising: Think about what matters most to you. You may not be able to do everything you want to do, so prioritising can help you make choices about where to spend your energy. Everyone's priorities are different, and there may be external factors beyond your control, such as financial, family, work and your treatments (e.g. dialysis) to take into consideration.  
  • Planning: Planning out your day, or a specific event, allows you to think ahead and use your knowledge of your own fatigue to map out how you might go about doing something. It can provide structure and routine and can also help when you are feeling mentally fatigued, as you have already set out a plan to help you. Be aware that planning takes energy, and that not everything is foreseeable, so sticking strictly to a set plan isn’t always the reality. 
  • Positioning: Our body positioning can impact our fatigue. Positioning requires thinking: what is the best position for my body to use the least amount of energy when completing this task? Standing or moving can often cause us to fatigue faster than if we were sitting down. Even being too cold or hot can impact our fatigue. Think about how you are positioned when you do certain tasks and see if changing or modifying this helps reduce your fatigue. 

Goal setting and grading

Goal setting can be a good way to work towards something; the goal should be within reason and with an understanding that it might not always be possible to fully reach the goal depending on the limitations of fatigue and other symptoms.  

Grading is a way of breaking a task down into parts and slowly working your way over time to being able to do the entire task. ​ 

For example, say cooking an entire meal for the family is extremely fatiguing and sends you into enforced rest. 

You can break the task down, and try doing only the food preparation (chopping, peeling) in one go, leaving the rest for later or for someone else. Once you feel you can manage doing this task without overexertion, you can go up one more “step” and try to do food preparation plus cooking the main dish in one go, and so on, until you reach your goal of being able to cook the entire family meal from start to finish.  ​  ​ 

It may be helpful to think about this in terms of climbing a staircase – you need to be able to reach the first step before you can try to reach the second one. With a graded task, you slowly build the capacity, step by step, to reach the top of the staircase.  ​  ​ 

It may not always be possible to reach the goal of doing something exactly the way you used to, and sometimes we must accept that our new "normal" is different to what we expected.  This can feel like a loss, but is actually a positive step forward in helping us better manage fatigue. It is also important when grading to be aware of your early warning signs and fatigue limitations so that you do not end up in a negative activity cycle.  

Physical activity/exercise   

Exercise for people living with kidney disease has been proven to be safe and improve your fatigue.  

The benefits of physical activity are also widespread. On top of improving fatigue, it can make you stronger, more independent and reduce your risk of falling. It can also improve your sleep and quality of life and help with depression and anxiety. It has also been proven to reduce your risk of high blood pressure, heart disease, diabetes, stroke, certain cancers and dementia.   

Exercise should be balanced with other areas of life. Think about the type of exercise, the frequency, and things which you enjoy that allow you to move your body in some capacity. You might not be able to do as high intensity or high frequency activities as you used to, but there are things that require less energy that can be just as affective (e.g. walking).   

When living with fatigue, the idea of “exercise snacks” can be helpful. Compared to fasting/one big “meal” (one big workout), exercise snacks are where you do smaller amounts of movement/activity/exercise, but slightly more frequently throughout the day. This should allow you to still get in some physical exercise while also providing your body time to rest and recover so that you do not push yourself into enforced rest.   

Where to start 

Consider using the 4 Ps (Pacing, Prioritising, Planning, Positioning) as previously discussed to begin exercising and engaging in regular physical activity.  

Prioritise exercise on days where you have fewer physical tasks and plan to alternate with other types of tasks (for example, a cognitive, social or emotional task) throughout the day. This may look like engaging in a cognitively demanding task in the morning followed by a rest period and quiet restorative walk later in the day. You may wish to pace activities by building in time for rest after physical exercise, however, try not to rest for longer than 30 minutes at a time, as this can contribute to the cycle of inactivity.  

If you feel like your fatigue worsens significantly even with gentle and light exercise and are concerned, speak to your GP or healthcare professional. 

Exercise Recommendations  

People living with kidney disease should aim for the national recommendations for exercise, which are 150 minutes of moderate aerobic exercise and two strengthening sessions per week if fatigue levels allow this. Because people with kidney disease are at higher risk of muscle loss due to increase uremic toxins in their body, it is extra important to incorporate strengthening activities into your routine (whether through natural movement or intentional exercises).    

If you have not exercised for a while, you may want to build your fitness slowly as you go along. If you are not exercising at all, consider starting with 2-3 exercise sessions per week for 5-10 minutes at a mild-moderate intensity and building gradually from there. If you cannot reach these recommendations, do not stress. It is far better to do something, even if it is just for a little bit, rather than nothing at all.     

Exercising at a moderate intensity is safe, and often effective in improving the symptoms of fatigue. You can use the talk-sing test to measure the intensity of an exercise. Generally, if you’re engaging in a moderate level of exercise, you can talk but not sing. If you’re engaging in a vigorous activity, you won’t be able to say more than a few words. Forms of moderate aerobic exercise may include brisk walking, cycling, rowing. Strength sessions could include Pilates or weight-based training.   

Remember whilst exercise shouldn’t feel painful, it should feel a little challenging.   

Vigorous activity (for example running) is not generally recommended for those with fatigue although everyone has different limits when it comes to exercise, and it is important to become aware of yours.   

Energy Bank Concept  

Some people find it helpful to understand their energy and fatigue through an “energy bank”. In this metaphor, your energy is like money in a bank – there is a limit, and it needs to be spent wisely. If you repeatedly over-spend more than you have, you will go into “energy debt”, which is usually enforced rest.   

Certain activities may "cost” very little energy, while others cost a lot, and you need to be able to budget your energy so you don’t overspend.  

Think about how much energy you can spend in an entire day without pushing yourself into enforced rest and try to not overspend your energy allowance each day. This is where doing a fatigue diary beforehand can be useful.   

If it is helpful, you can assign different “amounts” of energy to different tasks to help you manage your day. For example, imagine you assign your energy limit as £10. You may feel that washing and dressing uses up a little energy, maybe £1. However, going to the community centre and seeing friends/socializing, or going to work, may be highly demanding and use up £6.   

This leaves £3 left of “energy” for you to spend, and so instead of doing another activity that day, such as a big grocery shop which uses up £5 of your energy, you can spend your energy on something less demanding for that day, like cooking dinner with what you have left in your fridge, and another gentle activity.   

This is just a basic example – it will be different for everyone – but should give you an idea of how this concept might be able to help “budget” energy and fatigue levels.  

“Switching off” / relaxation

“Switching off” - or allowing yourself time to recover – is a very important part of fatigue management, as it helps replenish our energy levels and restores our bodies. It is not being lazy or doing nothing – it is necessary and should be planned into your day. It can also be thought of as a “restorative activity.” 

“Switching off” or resting does not mean stopping physical activity, as you can be lying completely still, but your mind be in overdrive thinking about all the things you are doing, causing mental fatigue. Often, doing gentle activities or something that helps you relax and recharge is best. 

Everyone finds different things relaxing and restful. It may include seeing friends, a hot bath, light gardening, reading, or a calm walk in the park. 

The key is finding what helps you switch off and then planning frequent breaks throughout the day where you can switch off and do a relaxing task. It is far more effective to take shorter periods of rest more frequently, than longer periods of inactivity less frequently. Over time, this can replenish your energy levels and help keep your fatigue manageable. 

Rest and “slowing down” can feel difficult in modern day society - we live in a world that is becoming more “switched-on” a 24/7 basis with phones, flexible working, emails, technologies, etc. There are a lot of associations between productivity and personal value – the need to be doing more, more, more (making more money, training harder, accomplishing more, etc.). 

There is also the expectation of others – people, jobs, social groups, cultural groups, etc. - that can unintentionally make people feel guilty by taking rest; it may be helpful to speak to people you trust and/or share this information with others so they can help you with these changes. 

It may be hard at first to incorporate more rest into your day to help with your fatigue, but hopefully with time and the right support, it becomes easier and guilt-free.

Sleep hygiene

 Sleep is a key part of your health and wellbeing, as well as managing your energy and fatigue. Poor sleep can be very frustrating and impact your quality of life. ​There are many things that can impact our sleep – some are modifiable, while others are not. 

What to do if I have poor sleep? 

Understanding your sleep patterns can help you make the necessary changes needed to improve it. Having a record of what you are doing can help you notice your habits. Like the fatigue diary, you might find it helpful to log a history of your sleep for at least a week, noting down things like:  

  • Times that you sleep 
  • Your position (e.g. are you in your bed? Couch? Chair?) 
  • Any naps you might be having throughout the day 
  • When you’re taking your medications 
  • What you are eating/drinking and at what times 
  • Things like pain, waking up to use the toilet, what you are doing before you go to bed (e.g. watching TV, reading, eating, working, exercising, etc.)  

Look at the list of things below to see if there are any changes you might be able to make to your daily life to improve your chances of getting good and restful sleep:  

  • Getting up and going to sleep at the same time every day 
  • Eating your meals at around the same time every day 
  • Exercise during the day 
  • Avoid drinking caffeinated drinks too late in the day 
  • Avoid taking naps that are longer than 20 minutes if possible and avoid napping too late in the day. Napping for too long, too often or too close to bedtime makes it much harder to get good, quality sleep at night.  
  • Ensure your sleep environment is dark, comfortable and quiet, and if possible, try not to use your bed for anything other than sleep and intimacy 
  • Keep your bedroom between 17-20 degrees C as being too hot or too cold can impact your sleep negatively 
  • Avoid alcohol too close to bedtime 
  • Turn off the television and screens a few hours before you go to bed  

If you notice a connection between your medications and your sleep, it may be useful to speak to your GP or healthcare provider about it.  

Emotional Consequences  

Fatigue can cause a loss of something (or many things) – an activity, a way of life, dreams/goals, relationships, etc. – and it is OK to grieve this. It may take time to process and accept your “new normal.” You may feel a loss of control over your life or may feel quite lonely. Many symptoms are hidden disabilities so your difficulties may not be obvious or may not be well understood by others. 

You may also feel guilty, angry, sad, worried… a whole host of feelings, which in turn need energy to process. Furthermore, change – whether it be the behaviours themselves or the cognitive process behind them – can take a long time to become more habitual and sustainable and can also bring up a range of emotions.   

Fatigue management requires adjusting habits and routines, but it also requires some acceptance that while there are ways to improve fatigue and live with it better, that it is still a symptom of kidney disease and may always exist in some capacity. Fatigue management aims to give you more control over your fatigue, rather than your fatigue controlling you. 

A final word

Good fatigue management takes time. 

It requires learning about your own fatigue – what your energy looks like day-to-day, your triggers and limitations, as well as your priorities, what you can and what you want to do. 

It also requires trying out different “techniques” - not everything works the same for everyone, and it takes some trial and error, adjustments and tweaks over time to find out what works best for you. 

And lastly, it requires a lot of acceptance of a “new normal” - life with fatigue will likely look different than it did before, but learning to live with it well gives you the greatest chance of being able to do the things that matter most to you and have a good quality of life.

Lead author: Elyssa Grief, occupational therapist
Contributing authors: Natasha Aruk, physiotherapist, Michelle Cody physiotherapist, and Lisa Ancliffe, occupational therapist

Last reviewed March 2026
Next review March 2029

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