Fatigue

Whether you’re living with or after leukaemia, lymphoma, myeloma or any other blood cancer:

1. You’re not alone – Fatigue is a common symptom of blood cancer and a side effect of treatment.
2. It’s more than just tiredness – It can affect you mentally and physically, and can hit even when you’re well-rested.
3. There are things that can help – Balancing being active with rest can help reduce fatigue.

Fatigue is when you’re totally drained in body or mind. Fatigue can hit even when you’ve rested or slept well. It’s a normal and common side effect for people with blood cancer. Lots of things can play a role in fatigue – the cancer itself, current or past treatment, medications, stress or depression. If you experience fatigue, tell your healthcare team as they may be able to help.

Tiredness can also be a symptom of coronavirus (COVID-19), so it’s important to tell your healthcare team if you feel more tired than usual, or notice any other change in your symptoms.

If fatigue or tiredness is new for you, or it gets worse, tell your healthcare team so they can assess whether it indicates a change to your health.

If you experience fatigue as a result of your blood cancer or treatment, there are things you can do to manage it. All the tips here have come from people with blood cancer.

• Balance – You need both rest and activity to fight fatigue. It may sound strange, but being more active actually reduces tiredness.
• Keep active - We have some tips and tools to help you get started, including some exercise videos for people with blood cancer.
• It’s ok to ask for help – What could you delegate? Could any friends or family help?
• If you’re still working, think about what changes would help you – and be open with your boss if you can. We have more information about your rights at work and things you could ask for to help you.
• Learn what’s doable for you – Keep track of how you feel each day and week. You could use a fatigue diary or an app. Tell friends and family what works for you and plan rest in between activities – video calls can be draining!
• Be kind to yourself – You’re not being lazy. You don’t have to be grateful and positive all the time. If you need a rest day, have one – because looking after yourself is a priority.
• Take care of yourself – Living with fatigue can make you feel down. Feeling depressed or anxious can also cause fatigue. Find out more about getting support for your mind and emotions.

Tell your medical team or GP about your fatigue. They should refer you to an occupational therapist or physiotherapist, who can show you ways to pace yourself and maximise energy levels.

RESTORE is an online resource from Macmillan Cancer Support that helps you plan and set simple goals to manage your fatigue. Macmillan also has information on its website about tiredness (fatigue) and things that can help.

Users are also discussing their blood cancer fatigue experiences and sharing tips on our community forum. Check out these forum threads:

• Chronic fatigue
• Tiredness and chemo

Janssen-Cilag Ltd has supported Blood Cancer UK with funding for the production of this web page and others within the ‘Living well’ section. It had no influence over the content.