Medical opinion
Acknowledging fatigue
We recently recorded a podcast on fatigue with Haematology Nurse Clinician Ruth Jackson. You can listen to the full podcast, but here are some of the topics we covered.
Trying to describe fatigue
The subject of fatigue pops up every day in clinic and means different things to different people, in the same way that pain does.
Fatigue is something that is difficult to describe and measure, and people struggle to work out the reason behind it. It could be the lymphoma itself, treatment, age, other conditions, medications or other factors. I would describe it as an overwhelming tiredness. It’s a tiredness that isn’t relieved with a good night’s sleep. The low energy is a constant battle for people and can affect mood and sleep pattern as well as having an impact on daily living and activities.
What causes fatigue in someone with lymphoma?
People often think it’s the lymphoma that’s causing the fatigue, but that is not the whole picture. It can be the cancer, the treatment or both.
The disease burden of lymphoma can cause fatigue as the rapid turnover of cells uses a lot of energy. Add in anti-cancer treatments like chemotherapy, radiotherapy,immunotherapy and monoclonal antibodies, and there are lots of reasons for fatigue, especially as they often have a cumulative effect. With radiotherapy there are the numerous trips to the hospital, even though the treatment itself takes relatively little time.
But there are other factors to consider, which makes it more difficult to unpick the cause of the fatigue. Lymphoma and other cancers are predominantly diseases of older age. As we get older, we might have other health problems, like diabetes or thyroid issues, as well as taking medications for other conditions, all of which can cause fatigue.
So I think it’s important to consider whether other health conditions are being managed. That’s where the link to the GP or primary care may come in, to ensure people are keeping up with medication reviews, diabetes checks, checking thyroidfunction and so on. And it’s worth considering, could there be something new going on?
Can fatigue be diagnosed?
While something like anaemia can be diagnosed with a blood test, there is no measurable diagnostic for fatigue. Some health professionals use scoring scales to rate fatigue but, like pain, fatigue is very individual. It’s important for people to communicate how they are feeling – to the healthcare team and also to family – so that people understand.
“It’s important to tell your healthcare team about your fatigue and how it’s impacting your day-to-day life.
How long is fatigue likely to last?
This varies from person to person and often depends on the lymphoma and treatment. For some people, fatigue will come and go throughout their time with lymphoma.
Sometimes one of the most important things is to acknowledge fatigue. Then people start to think about how they can manage it. It’s almost like having permission to acknowledge the fatigue and understanding there is a reason for feeling like this. For some people this can be a ‘light-bulb’ moment when theysuddenly understand what’s happening.
Should I push through fatigue or rest?
People need to be careful about ‘pushing through’ because of something called ‘boom or bust’. This is when people feel really well and try and do everything.
But the consequence of that is the ‘bust’ the next day, where they crash and this can feel dreadful.
Instead, I suggest people set goals, prioritising what is important day-to-day. It might be that you’ve got a particular job to do in the house. Rather than doing everything in one day, split it into more manageable, bite-sized chunks. And if you have an occasion you want to go to, conserve energy beforehand to make it possible.
I’m often asked about napping during the day. The danger is that by doing that you may not be able to settle at night, and sleep hygiene is really important. So a nap in the day may be counter-productive. In addition, your mind is often very active at night, thinking about your lymphoma or other things, so anything to aid that important sleep is helpful. Getting out for a little bit of a walk, getting those endorphins going, may prove helpful if you feel sleepy in the day.
Some people find it helpful to have a night-time routine to aid sleep like avoiding screen-time, relaxing, reading a book, having a milky drink or mindfulness exercises.
Using the three ‘P’s as a tool
People find the three ‘P’s a useful tool – they stand for prioritising, planning and pacing.
- Prioritising – what’s an important task? What’s important to me? What can wait?
- Planning – can I get someone else to help me or to do the task?
- Pacing – acknowledging that you might not be able to do things as quickly as you did before.
How helpful is exercise?
People worry we are going to suggest they go to a gym, but if you didn’t do that beforehand, we wouldn’t expect you to do it now. But exercise has great benefits, so we encourage people to do what they feel able to, such as a 15 or 30 minute walk to the shops for example. And it is important to factor in that you need to get back. Getting that dopamine release when you get the sun on your face and having those endorphins are all beneficial.
Does diet have a place in recovery after fatigue?
One of the biggest things is that people with lymphoma often lose their appetite, either with symptoms or during treatment. Taste and appetite can change during treatment. People with active cancer may burn more calories, so nutrition is important and that can be challenging if you have no appetite or are feeling nauseous. If you feel sick, speak to your team as there are effective antiemetics available.
We get essential vitamins from food, things like B vitamins, iron, folate. These are all the building blocks for our blood. So nutrition and diet plays a vital part. Don’t be afraid to ask if a dietitian could be helpful.
Is a fatigue diary helpful?
It’s hard to quantitate what fatigue means to an individual. By using a fatigue diary you can get more of an understanding around energy levels. By noting your ‘good days’ and ‘bad days’, it may help to identify patterns around fatigue; what makes it better and what makes it worse. In that way a fatigue diary can be used as a tool to plan or prioritise when you might be at your best.
Are there strategies to make it possible to return to work or study?
A lot of people expect to have their last treatment and then return to their old self fairly shortly afterwards. I’m usually quite clear from the start that it can take months for energy levels to return. For many people this might mean taking a little bit of extra time off work once treatment is completed.
“In my experience as a Haematology Nurse Clinician, more than 70% of people with lymphoma describe fatigue, and the subject comes up at most of my consultations.
I would encourage people to have a conversation with their employer. It might be that reasonable adjustments can be made, like a change to working hours, flexi time or working from home.
For young people in full-time education, it’s often unmanageable to carry on with studies. Again, having the conversation with the institution and asking if studies can be put on hold or deadlines extended is valuable.
Whether it’s for work or education, you can ask your medical team to support you with a covering letter confirming details when considering reasonable adjustments.
With thanks to Ruth Jackson who is a Haematology Nurse Clinician at Mersey and West Lancashire Teaching Hospitals.
Full podcast available to listen to on our website, Apple Podcast and Spotify. You can read a transcript here.
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