Heal - Article 03
You might have found the term fatigue used casually in conversation to describe when someone is feeling tired or under the weather, but this is a simplification of an often distressing and debilitating condition.
What is fatigue?
Fatigue is the feeling of tiredness or low energy, or the need to constantly rest. When you experience fatigue you likely don’t even feel fully refreshed by rest. It is often accompanied by a feeling of weakness, difficulty in concentrating and a lack of energy to do even the most basic daily chores.
❝I would have a shower and then have to go back to bed. I just couldn’t do anything more.❞
When people experience cancer-related fatigue, it’s not uncommon to also have an increased difficulty with going to and staying asleep. Fatigue can take many forms – physical, mental (cognitive) and emotional – and these forms can either exist in isolation or co-exist together.
How do you know if you are fatigued and not simply tired?
This is a question that crops up a lot and, in all honesty, is tricky to answer. These are the key signs to look out for:
- feeling anything from mild tiredness to total exhaustion
- feeling drained
- resting does not make it go away completely
- having no energy or strength
- feeling dizzy or light-headed
- finding it hard to do routine tasks
- lacking motivation
- finding it hard to concentrate
- finding it hard to think or speak
- low sex drive
- finding it hard to cope with life
- difficulty in managing your feelings
You can also use other measurement tools such as the Brief Fatigue Inventory and the Fatigue Self-Management Scale.
How can fatigue be managed
Whilst it’s important to recognise what might be causing fatigue, if you’ve experienced it, you’ll know that the most frustrating part is that it can start to impact your daily activities and you’ll be looking for practical solutions for managing it. The management broadly depends on the level of intensity you experience.
For low levels of fatigue, where you have a lack of energy and motivation to do daily activities that feels disproportionate to anything you’ve experienced before, there are things that you can do for yourself, along with help from others, and intermittent help from healthcare professionals.
It might sound straightforward, but at a basic level self-management strategies include things like:
- Getting into a structured daily routine
- Regular exercise
- A good diet
- Sleep hygiene
These are all areas we’ll explore throughout the Onko programme in MOVE and NOURISH too. Sometimes you might need help to initiate these strategies and this may be combined with psychological support to help drive sustained behaviour change.
When fatigue is more debilitating, it is important to discuss this with a healthcare professional. Severe fatigue is when you see more drastic impacts to your daily routine, difficulty in concentrating and speaking and is manifested by a lack of energy and a desire to not even get out of bed. It is important to identify whether other issues such as anaemia, malnutrition or psychological factors may be the cause of or are contributing to the fatigue, so that you can address these initially.
However, if these severe feelings are sustained, medications such as dexamethasone (a steroid) or methylphenidate (a psychostimulant) might be prescribed. Medications should always be monitored by a doctor, as there is limited research supporting use of these medications to treat fatigue.
Strategies for managing fatigue
Now, let’s explore some of the best strategies for the self-management of fatigue in more detail:
It seems counterintuitive and probably even impractical to undertake any exercise when you’re feeling exhausted. However, there is considerable research that demonstrates that regular structured exercise can help reduce fatigue.
This is likely due to an increased release of endorphins (a substance that is produced normally in the body, associated with feelings of euphoria) when exercising. The benefit may also be through increased feelings of control and self-confidence from having achieved goals during a challenging time. Research suggests that aerobic exercise that gets the heart pumping for as little as 15 minutes a day can improve energy levels. Even going for a brisk walk will do this. Adding muscle strengthening exercises will also prevent the loss of muscle and improve daily function.
If you’re unsure where to start, it’s always advisable to be guided by a physiotherapist or trained exercise specialist who will be able to create a personalised and structured exercise programme. By starting small and gradually increasing over a period of time, you’re more likely to feel motivated during a difficult time and they can help monitor you and ensure you getting the most out of your exercise. You’re putting the effort in, so you might as well maximise it!
A healthy, balanced diet is always important, but nutrition also plays a key role in reducing the effects of fatigue on your body.
It is vital to eat enough protein to avoid losing muscle mass and strength, so we recommend including protein rich foods in your diet such as legumes, nuts, milk, eggs, fish and lean meats. A high protein diet has been shown to reduce fatigue related to muscle weakness and there is some research to suggest that whey protein, which contains an amino acid (a building block of protein) called leucine, may stimulate muscle building.
If you are losing weight due to cancer or its treatments, you should increase calories alongside protein to prevent further weight loss.
A healthy, balanced diet can also help reduce the level of fatigue experienced. There is research indicating that both omega-3 fatty acids and wholegrain carbohydrates can positively impact energy levels and fatigue through their anti-inflammatory properties and effects on intestinal microflora (healthy gut bacteria).
Speak to our team to get advice on how best to make adjustments to your diet based on your specific circumstances.
3. Attend to psychological factors
These might be the root cause of fatigue, or complicate it. Most likely moderate-severe clinical depression or anxiety, whether new or pre-existing could be causing or at least contributing to the fatigue. If you think this could be a factor for you, use the Onko health checker scales and speak to a trusted healthcare professional.
Other psychological factors can include unhelpful beliefs about fatigue (like the incorrect belief that you must rest as much as possible), or lacking the motivational ‘pull’ of a weekly structure with achievable goals. Look at our guides on goal-setting and values on the app within FEEL.
4. Sleep hygiene
Sufficient and refreshing sleep is clearly important for recovering from fatigue. This can be elusive for people with cancer, for a variety of reasons, including effects of medication (e.g. steroids, hormonal treatments etc), pain, worry, disruptions of routine, etc. For mild-moderate levels of sleep disruption, and if you slept well previously, look at guidance on self-management in our FEEL section, e.g. science of sleep and relaxation. More persistent and severe levels of sleep disturbance will need evaluation from your doctor, and consideration of medication.
5. Energy conservation
There are 3 Ps that help the management of fatigue. Repeat after us: Plan, pace, prioritise.
A weekly plan is key to conserving and restoring energy levels. A good plan will integrate daily physical exercise, time for pursuing what matters most, and sufficient self-care and rest.
Structure your day to alternate between cognitively and physically taxing activities, with time in between for restoration and comfort. For example, a brisk walk to the shops can be followed by down-time with a book, or set a time limit to doing administrative paperwork and break it up with a yoga or stretch routine. The proportion of time spent in each type of activity will vary, based on the levels of fatigue.
Be mindful that daytime naps don’t disturb your night-time sleep. Try and recognise the time of the day when you feel the highest and lowest levels of energy and plan your day accordingly. Do some advanced planning ahead of certain activities. For example, if cooking, take your time to think about what you will need ahead of starting.
Think about slowing down your activities, or breaking them up into different components. This may feel very restrictive and frustrating at first, so remind yourself that you are on a gradual recovery plan. Boom-and-bust is the opposite of pacing and is very clearly associated with longer and a less complete recovery.
Start by asking yourself the following questions:
- What are the most important things to be done in a day?
- What can be delegated, or wait for another day?
Try and prioritise what needs to be done by you and what you can ask for help with. This allows your family and friends to contribute and play their part in looking after you. It’s important to not always prioritise chores, work-like tasks and admin – the overall plan should provide a good balance. Sometimes, entertainment and fun, social activity or self-care should be the most important things to use energy for.
Finally, none of us are machines. This is a long-term task, and you won’t always get the balance right. The important thing is noticing, being kind to yourself and adjusting when needed. Also, do allow yourself the occasional, conscious ‘energy spending spree’ when something is truly important and worth it.
When will I feel better?
For most people, the fatigue that results from cancer treatment will recover within weeks to months as the body and mind recover and rebalance. However, we have to recognise that for a number of people, a degree of fatigue remains long-term.
For example, in a major UK study of recovery from primary bowel cancer, 37% reported problematic fatigue at 3 months after surgery, and this was 20% at 5 years. This is more likely when people have other health problems (e.g. arthritis, depression), long-term effects from cancer treatment (e.g. brain radiotherapy) or continue on medication (e.g. hormones). When fatigue persists, it is especially important to look at a well-balanced and holistic management plan and set achievable goals to focus and sustain the most important aspects of your life.
How can partners & carers help?
Seeing someone we care about feeling exhausted all the time and lacking their usual spark is very difficult. Like with many symptoms and experiences in cancer, having effective support can make a real difference. We strongly advise you involve your Onko team in your discussions with healthcare professionals, so that you all have the same understanding of the fatigue and work together on its management.
If you end up with different ideas about how to deal with fatigue, it can cause unhelpful worry or friction, or ineffective coping. For example, while you will likely need practical help, you also need to maintain your autonomy and control, and be allowed to fail – being ‘managed’ and protected may be helpful for short periods, but not for long.
If you are collaborating well, and the people around you are clear about what they can specifically do to help and what not to do, you will all feel better and more confident. This will also be more sustainable in the long-term.
Fatigue can play a large role on your day-to-day life, especially if it is severe. There are a number of techniques to manage symptoms but if you’ve tried these and aren’t seeing the desired results, always speak to your team and healthcare professions who might be able to prescribe medication or help in other areas. Remember you’re not alone in these feelings – we encourage you to reach out to friends and family or to other people also going through treatment as an ally.