Managing fatigue after a stem cell transplant

What is fatigue?

When we talk about fatigue, we don’t just mean feeling tired after working hard. Fatigue is when you find it difficult to concentrate and have no energy, even after lots of rest and a good night’s sleep.

It can make you feel both physically and mentally drained, leaving you with very little motivation and it can be hard to concentrate, even on simple things.

Signs of fatigue

There isn’t a standard set of rules that your medical team will use to decide if you have fatigue or not. Everybody’s recovery is different, and it will affect them in different ways. This is why it’s important to keep your team well informed about how you’re feeling.

If you have any of the following symptoms, it could be a sign of fatigue:

• Feeling tired regularly, especially when you wake up.
• Feeling tired after small tasks or restful activities like watching TV.
• Needing to nap during the day.
• Trouble sleeping during the night.
• Feeling low or depressed.

When does it start and how long does it last?

Fatigue can develop at any time after transplant, but most patients start to feel fatigued during pre-transplant conditioning therapy. You might also notice it when you go home and struggle to do your normal day-to-day activities.

You might have felt like you had very little energy before your transplant took place. A combination of your blood cancer or blood disorder and how it was treated could have left you already experiencing fatigue.

Fatigue can be a short-term effect that improves after a few months, but some patients still experience it more than a year after their transplant. Your experience of fatigue could be down to:

• your pre-transplant conditioning therapy
• your cancer or blood disorder
• side effects, such as graft versus host disease (GvHD), anaemia or hormone changes
• medications you are taking
• your age, general health and wellbeing
• feelings of anxiety, worry or depression.

For some people, fatigue may never completely go away. This could mean that you need to make some permanent changes to your lifestyle so that it’s easier to cope with.

What causes fatigue and what can I do about it?

There are many potential causes of fatigue, some of which relate to your blood cancer or blood disorder and your transplant. But your general health and wellbeing can also make a difference.

Fatigue tends to be a bigger concern for older patients and those who had a lower level of fitness before their transplant.

We outline the main causes of transplant-related fatigue below, alongside suggestions that should make it easier to manage. The more common causes are listed first but you may not experience all of them during your recovery.

If you have any concerns relating to fatigue, it’s important to talk to your medical team so they can identify what’s affecting your energy levels, and how they can help. They may refer you to other healthcare professionals, such as a dietician or physiotherapist, for further advice and support too.

Conditioning therapy

Before your stem cell transplant, you will have had a course of treatment known as conditioning therapy that consisted of chemotherapy and possibly radiotherapy. It prepared your body for transplant by removing the cells of your immune system, including those causing your blood cancer or blood disorder. This created enough space in your bone marrow for your donor’s cells to engraft and start making new healthy cells.

Conditioning therapy is one of the main causes of fatigue after a transplant. You might find fatigue gets worse while you’re having treatment, then passes. It can improve after weeks or months, but for a small number it can go on for a long time, even years.

Eating and drinking

It can take a while to get back to your normal diet after your transplant. You might find you don’t have much of an appetite, and it might come and go during the first few months to a year. Certain foods might taste different to how they did before, and you might not like the foods you once did.

Chemotherapy damages the cells in the mucosal lining of your mouth. The skin can break down, which can cause painful ulcers to form inside your mouth and throat. Ulcers may also form further down your digestive tract, which can cause discomfort and make it difficult to eat certain foods. This normally occurs about a week after treatment and should clear up in a week or two.

Sickness and diarrhoea

It’s common to feel sick and be sick, and have diarrhoea (runny poo), after your transplant because of your treatment, medication, a possible infection or GvHD. Nausea normally only lasts a week or two for most people.

Anaemia

Anaemia is caused by a low number of functioning red blood cells. Almost all stem cell transplant patients will have anaemia at some point in their treatment, and it’s most likely to happen early on. This is because many blood cancers and blood disorders affect your body’s ability to make blood cells properly. The conditioning therapy you had pre-transplant will also reduce the number of blood cells you make.

Anaemia can be caused by other factors too, such as vitamin deficiencies. Low levels of vitamin B12 or folate acid can both lead to anaemia post-transplant.

GvHD

After your transplant, there are still small differences between your donor’s stem cells and your own cells. This means your new immune system may harm other cells in your body because it sees them as ‘different’.

Some GvHD can be a good thing because it shows your immune system is active and can attack any remaining or returning disease. However, too much GvHD can cause side effects. GvHD could potentially happen anywhere in your body but often affects the skin, digestive tract and liver.

Problems sleeping

Recovering from your stem cell transplant will be both physically and emotionally demanding. There may be times when you find sleep difficult through a combination of feeling unwell, stress and anxiety.

It’s common to have problems sleeping while you’re in hospital. It might be noisy or too light on the ward, or your medical team may need to wake you to check your blood pressure, pulse and temperature in the night. It can also be difficult to get used to a new environment and routine when you return home after treatment.

You should find that sleep problems get better over the first year, but some people still struggle to get a good night’s sleep for longer.

Other factors

• Hormone changes – Depending on your situation, your stem cell transplant could lower the levels of certain hormones in your body, which can cause fatigue. This includes thyroid hormones, vitamin D, oestrogen and testosterone. Your medical team will offer hormone replacement therapy (HRT) if you need it.
• Medication – It’s likely that you will need to take lots of different medications during your recovery. Some of them could make you feel drowsy, especially if you have to take a few medications together.
• Pain and discomfort – Experiencing pain and discomfort can be very tiring. You don’t have to cope with it by yourself. Speak to your medical team who can adjust any medications or find other ways to support you.

If you have any concerns about anything we’ve mentioned here, you should talk to your medical team. They might be able to change either the dose or type of medications you are taking, or support you in other ways, to make your symptoms more manageable.

How can I manage my fatigue?

There may be times in your recovery when fatigue is unavoidable, but it’s still possible to manage your situation and make the best of the energy you have. 

There are four main ways you can help reduce the effects of fatigue:

• Manage your energy levels
• Physical activity and exercise
• Sleep well
• Delegate daily tasks

Managing your energy levels

Many patients find that their energy levels go through highs and lows during the day. It’s very easy to overdo it when you get up in the morning and have more energy, only to need a nap in the afternoon. If you get into the habit of listening to your body and knowing how you’re likely to react to certain activities, it will become easier to manage your fatigue.

Top tip: Ask your GP, or medical team, to refer you to an occupational therapist. They can help you plan your daily activities and maximise your energy levels and rest periods.

• Plan ahead – Write a list of the things you want to do each day. Make sure you prioritise the things you either really enjoy doing or you really need to do. It can be very frustrating to think that you’ve wasted your energy and had to miss out on something important to you. Even if you are having a bad day, try to do at least one thing. It can be difficult but achieving something may make you feel more positive.
• Pace yourself – Pacing is a way of managing your activities throughout the day. This will help make the most of the energy you have and stop you doing too much. Try to avoid getting into a routine where your energy levels rise and fall throughout the day. Decide when it’s best to stop and rest – be flexible and understand your limits.

• Little and often – Break down your tasks into small and manageable goals, and make sure you get some rest in between. This will help top up your energy levels regularly and reduce the risk of becoming exhausted. 

• Keep a diary – Make a note of the activities you do and how you feel afterwards. This will help you to spot patterns and make changes to your routine.
• Set yourself goals – It can help to set achievable goals that can also be expanded over time. For example, walking to the end of your street, then into town or for a length of time you set yourself. When you reach your targets, it will help you feel in control and that you’re making progress in your recovery.

Physical activity and exercise

Exercise may feel like the last thing you want to do, but it can help reduce fatigue and improve physical strength. You will find that your fitness, endurance and muscle strength will have reduced during your treatment. Keeping active and slowly building up towards structured exercise will be an important part of your recovery.

Getting plenty of exercise and fresh air will also release hormones called endorphins. They act as ‘feel good’ signals in your body that can lift your mood and reduce feelings of stress and anxiety.

Where do I begin?

Exercise can feel daunting for anyone, let alone someone who has gone through a stem cell transplant. Try to follow these steps:

1. If your medical team agrees, you should be able to try a few very simple exercises in your hospital bed. If your hospital has a physiotherapist, they can give you some suitable exercises and stretches.
2. As your recovery continues, your physio will work with you to increase your physical activity. Focus on maintaining functional movement to begin with, like walking and moving regularly, building up gradually. You will probably find it more manageable to break down activities into small chunks with some rest in between.
3. Once you’ve left hospital, try to keep a routine of manageable movement. Then try to increase your activity. You could aim to walk to the end of the road and back one week, then aim to walk to a nearby shop the following week.
4. Find an activity you enjoy, like swimming, yoga, or walking with friends. Exercise should be fun. If you have a favourite sport, it could be time to start playing again, or you could try something completely new.

If you’re really struggling with fatigue, or having a particularly bad day, sometimes even light physical activity can be a real challenge. But it’s important to still do something, and it could help you feel better. It might be as simple as aiming to break up long periods of sitting or lying down by getting out of bed, having a wash and moving around indoors.

Top tip: We have lots more information and support on exercise and stem cell transplant on our exercise and keeping active webpage.

When it’s not safe to exercise

In general, if you’re recovering well, it’s safe to do light or moderate exercise.

There could be times, especially in your early recovery, when your blood counts are very low. Your physiotherapist, or another member of your medical team, will be able to give you specific advice about exercising if this is the case.

Exercise should also be avoided if you start to feel unwell in any way. Possible signs of illness or an infection include:

• having a temperature
• feeling sick
• being sick or having diarrhoea (runny poo)
• a persistent headache
• aches and pains
• dizziness or feeling faint.

If you start to have any of these symptoms, you should discuss them with your medical team straight away.

Sleep well

Getting a good night’s sleep should give you more energy and help your recovery. This means sleeping for the right number of hours and making sure your sleep is of good quality.

If you struggle with your sleep, you can record your sleep patterns using a wearable fitness tracking device, or make a note of the hours you sleep. You and your medical team can look back on this, spot any patterns and work out how to help.

When should I sleep?

Our bodies have a natural clock built in. Normally, it allows us to wake up in natural daylight feeling refreshed and makes us feel tired and fall asleep at the end of the day. This sleep/wake cycle is also called our circadian rhythm. When it becomes disrupted it can affect our mood and general wellbeing. It can also make it more difficult to fall asleep at night.

Night-time sleep is the most important for your overall wellbeing, and your general recovery, so limiting your daytime naps is really important. Extra sleep during the day won’t make you feel better because it doesn’t affect what’s causing your fatigue. If you need to sleep during the day, plan it for late morning or early afternoon, and limit it to 45 minutes to avoid night-time disruption.

Preparing to sleep

If you are struggling to get a good night's sleep, you might find the following suggestions helpful:

• Ear plugs and blackout blinds or curtains will help remove background noise and light.
• Avoid alcohol, caffeine and nicotine for four hours before sleep.
• Don’t use devices with an electronic screen in the hour before bed.
• Write down anything that’s worrying you before going to sleep.
• Start a relaxing pre-sleep routine, such as reading a book.
• Stick to a regular sleeping pattern – your body’s natural sleep cycle will be more settled.
• Create a calm, dark and cool sleeping environment.
• Only go to bed if you feel truly tired – if sleep doesn’t come, try to do something relaxing like reading or listening to podcasts.

Mindfulness meditation can also help improve sleep and reduce fatigue. It helps to focus your thoughts on the present so that your mind doesn’t wander to more stressful thoughts. You can find out more on the Be Mindful, Calm and Headspace apps and websites.

Delegate daily tasks

Even simple day-to-day tasks can be difficult for someone with fatigue, but having a strong support network around you will help relieve the burden.

Relatives and close friends might be able to help around the house, especially with jobs like:

• making dinner so you know you’re getting a good meal
• cleaning the house and emptying the bins that could be an infection risk
• childcare from time to time, so that you can get some rest – this will give you more time and energy to focus on getting better and enjoying the things you like.

Other tasks, such as your weekly shopping, can be done online and delivered to your door so you don’t have to worry about filling a trolley at the supermarket.

If you can afford it, paying for a cleaner would also free up your time to focus on your recovery. If not, asking for help from social services could be an option.

Fatigue and your mental health

Your mental health is closely linked to fatigue after a transplant. Fatigue can affect how you are feeling, your ability to cope, and your mental processes like memory and concentration.

It can be tricky to work out what came first – your fatigue or feeling low. It can be exhausting and mentally draining to be anxious and worried about your future all the time. Similarly, if you feel too tired to do the things you want, it can leave you feeling down and even depressed.

Some patients try to focus on just the physical side of fatigue, but it’s also important to consider the mental aspects too. You may find it much easier to relax and get a good night’s sleep by addressing your feelings and processing them. This isn’t always easy but there are many techniques, healthcare professionals and charities that can help you.

Memory and concentration

During your recovery there could be times when you find certain mental tasks more difficult than you once did. This could include difficulty remembering appointments, recalling the names of people or objects, and concentrating in general.

These problems are known as cancer-related cognitive changes (CRCCs). They often go hand-in-hand with fatigue.

You can read our Memory and Concentration webpage to find out more about CRCCs and tips to manage symptoms.

In the meantime, here are a few tips to consider:

• Make lists of the things you need to do or important things that would be annoying to forget. This could be in a diary, on your phone or on post-it notes in easy-to-see places.
• Always keep important things, such as your phone and keys, in the same place so they are easier to find.
• Find a quiet place with few distractions to help you concentrate on the task in hand. Turning off the TV or radio will also help you concentrate.
• Try doing harder tasks at the start of the day when you feel less tired.
• Getting into the same daily routine will make things more familiar and easier to remember.
• Crosswords, jigsaws and other puzzles exercise the mind and make it stronger.

Your emotions

There’s no right or wrong way to feel during your recovery. There will probably be times when you’re worried, times when you’re scared and times when you want to cry – and that’s OK.

But experiencing all these feelings can be exhausting. So finding ways to process and cope with how your feeling is important.

Ways to cope

It’s impossible to say what will work best for you, and some things may work better than others at different times. It might be a good idea to think about the things you did to help you get through other tough points in your life. You might find that they come in useful again during your recovery.

• Lift your mood – What you’re going through isn’t easy, so enjoy the little things in life. Buy that slice of cake when it tempts you, go out for a nice meal or do something you have always wanted to do, whatever takes your fancy. Many patients also use their favourite comedies, stand-ups or music to lift their spirits.
• Relaxation techniques – You might be familiar with the idea of mindfulness or other types of meditation as a relaxation technique. Activities like tai-chi and yoga also combine gentle movements with elements of meditation. These activities can help you become more aware of your feelings and focus your thoughts on the here and now. Even simply taking a deep breath can really calm your nerves.
• Counselling – When we experience difficult times in our lives it can be easier to talk to someone we don’t know. Counselling or other talking therapies can help you come to terms with your feelings and change your behaviour, so you feel more in control of your emotions.

Your medical team or GP will be able to refer you to a counsellor. Alternatively, if your situation allows, you can pay to see someone privately.

Extra help

Charities like Macmillan and Maggie’s fund purpose-built cancer centres with the aim of supporting patients and their families. They provide a calm place for cancer patients to focus on their recovery. They are run by specially-trained health professionals who can help with many topics including fatigue, nutrition and emotional support. They also provide recreational classes, professional talks and support groups.

On the Anthony Nolan Patients and Families Forum, you can read and talk about a wide range of topics related to stem cell transplant. You can take your time and be as involved in the discussion as you like. Some people take great comfort in reading about the experiences of other people without feeling like they need to contribute themselves.

More information is available in our Recovery section.

Living with fatigue

Explaining fatigue to friends and family

One of the biggest challenges you might face is explaining fatigue to friends and family. They might think that because you’ve had a transplant, you’re now better and can get on with life as normal. But really, you will be recovering for quite a while.

You will probably need help from others sometimes during your recovery. This could be helping with daily tasks like shopping and housework, but you will also need their emotional support.

There could also be times when you’re feeling down and don’t really want to be sociable. It can be difficult to balance how you’re feeling and still show that you appreciate the help they’re giving. It may help to show them this booklet, so they have an understanding of what you’re dealing with and how they could help.

Fatigue and work

Depending on your situation, you might have to return to work while still managing your fatigue. This can be a challenging time but your employer should be able to put a plan in place to help you. Many patients have a phased return to work, where either their responsibilities or time spent at work is steadily increased.

Top tip: We have a booklet called Work and Stem Cell Transplant: Information for Employers which can help to inform and support your workplace.

Anthony Nolan works with a company called Working To Wellbeing. Their work support services and work-focused health coaching to help people to become more active. They help to manage fatigue and other symptoms, so people can stay at work or return to work.

You can find more information on our Returning to work webpage.

Looking after someone with fatigue

Helping your loved one through their transplant journey has probably become the most important thing in your life. Although you are likely happy to do it, it can still be physically and mentally demanding, especially if you have other responsibilities. It may take time for you to adjust to your new supportive role.

You can access help from a range of places including social services, government benefits and charities, as well as your social network of friends and family. Nobody expects you to do everything on your own. Many people will be happy to offer you support but you also need to have the confidence to ask for it when you need it.

Make sure you continue to do the things that are important to you, too. Nobody will judge you for taking some time for yourself. It will support your own mental and physical health, and give you fresh energy to tackle any challenges ahead.

More information is available in the Support for parents, family and friends section.

Other useful contacts

5k your way
An initiative set up to help people recovering from cancer to run regularly.

British Association for Counselling and Psychotherapy
01455 88 33 00
Information about counselling and therapists in your area.

Carers UK Advice
Helpline: 0808 808 7777
Information and support for people looking after their loved ones.

Citizens Advice
Adviceline (England): 0800 144 8848
Adviceline (Wales): 0800 702 2020
Advice on a wide range of issues, including financial and legal matters. Online advice is available at: adviceguide.org.uk

Couch to 5K
A nine-week programme of three runs per week designed to get people more active. Each run has an accompanying podcast too.

Improving Access to Psychological Therapies (IAPT)
Enables patients to self-refer to NHS-funded counselling and therapy services available in their local area.

Macmillan Cancer Support
0808 808 00 00
Practical, financial and emotional support for people with cancer, their family and friends.

Maggie’s Centres
0300 123 1801
A network of drop-in centres for cancer information and support. Includes an online support group.

The Mental Health Foundation
Provides information on mental health, including mindfulness and mindfulness meditation.

Mind
Helpline: 0300 123 3393
Mental health charity which offers information, advice and support to anyone going through stressful situations or experiencing a mental health problem.

NHS Choices
Helpline: 111
Information about treatments, conditions and lifestyle. Support for carers and a directory of health services in England.

parkrun
Free, organised 5k runs held every Saturday at 9am throughout the country for people of all fitness levels and abilities.

Penny Brohn Cancer Care
Helpline: 0303 3000 118
Free courses and support for people with cancer and their families.

Samaritans
Helpline: 116 123
The Samaritans are available 24 hours a day to listen and provide help for any problem you would like to talk about.

Teenage Cancer Trust
020 7612 0370
Support to improve the lives of teenagers and young adults with cancer.

Ramblers Wellbeing Walk
Find a walk scheme in your area.

Working To Wellbeing
01284 748207
Provides wellbeing and rehabilitation services, supporting employees with physical health, mental health and long-term conditions.

Young Lives vs Cancer
Helpline: 0300 303 5220
Offers a range of services for children affected by cancer and their families, including a helpline for emotional support and practical advice.