Ask The Nurse // 4th October 2021
Most myeloma patients will experience fatigue at some point. It can be difficult to explain, challenging to live with and for many frustrating and debilitating. Finding effective ways to manage fatigue can help myeloma patients feel more positive and in control of their lives.
This month’s blog covers some of the questions we regularly get asked about fatigue and myeloma.
What is fatigue?
Fatigue is an overwhelming feeling of lacking energy that doesn’t go away even when you have rested. It can affect you both mentally, emotionally and physically and is different from tiredness.
Tiredness is usually short term and may affect you if you have worked hard, exercised, or not slept well — sleep and rest help to ease tiredness.
Fatigue is very individual and likely caused by a combination of factors. Identifying your fatigue’s cause (or causes) is the first step in treating and managing it.
Your fatigue may be caused by:
- Anaemia: Myeloma and some treatments reduce the production of healthy blood cells, including red blood cells. This can cause anaemia, of which fatigue and breathlessness are common symptoms.
- Treatments for myeloma: Many treatments for myeloma cause fatigue. Your fatigue is likely to be worse if you have radiotherapy or chemotherapy or more than one treatment at the same time.
- Psychological effects of myeloma: Don’t underestimate the role your mental wellbeing can play in your physical health. Coming to terms with your diagnosis, coping with treatment and adjusting to life with myeloma can be mentally and physically challenging. Prolonged stress, worry, anxiety and depression can all contribute to fatigue.
- Pain and painkillers: Pain can be draining; it can impact your mood, sleep, and eating ability, leading to fatigue. Some painkillers, such as opioids (e.g., codeine or tramadol), cause drowsiness, brain fog, and fatigue.
- Poor nutrition: Some myeloma treatments can cause side effects that make it more difficult to eat and drink, meaning you might not get the energy you need. Eating a healthy and balanced diet will help maintain your muscle tone and strength and increase your energy.
- Lack of sleep: Although fatigue isn’t directly eased by rest, not sleeping well at night can make your fatigue worse. Stress, anxiety, the symptoms of myeloma or treatment side effects, such as pain or hyperactivity, can affect your sleep/keep you awake at night.
As with all symptoms and side effects, you should tell your healthcare team about your fatigue so they can help you manage it.
How long will my fatigue last?
How long fatigue lasts will vary from person to person. It may get better or worse over time. How long the fatigue lasts will depend on what’s causing it.
If your treatment causes your fatigue, it may improve when you finish treatment. But there are lots of things you can do to improve or manage your fatigue in the meantime.
I am finding my fatigue challenging; what can I do?
Keeping a diary of when and how fatigue impacts you and what it feels like may help you have open conversations with your healthcare team and help them find the right solutions for you. Depending on your cause(s) of fatigue, your doctor may refer you to a specialist department such as:
Psychology: Fatigue can be mentally challenging. A psychologist can help when your fatigue affects your mood and motivation or when your mood makes coping with fatigue and pain more difficult.
Physiotherapy: They can give you advice on safe ways to increase your activity or mobility.
Dietitian: They can provide you with personalised advice on eating and drinking healthily.
Pain team: If painkillers, such as opioids, cause your fatigue, they can help you find the right type and dose of painkillers or nerve blockers to manage your pain effectively.
You may find that you are referred to the palliative care team. Although often associated with end-of-life care, palliative care teams are specialists in managing symptoms and complications at all stages of illness. They offer a holistic approach and focus on quality of life.
Are there things I can do at home to help manage my fatigue?
There are many non-medical strategies that you can try to help manage your fatigue. You should always get advice from your doctor, specialist nurse or GP before making changes to manage fatigue.
- Eating well, building a good sleeping pattern, and gentle activity (walking or cycling) are all healthy ways of managing your fatigue. Other tips include:
- Be kind to yourself. Whilst ticking things off a to-do list can give you a sense of accomplishment, you don’t always have to be productive. Sometimes just getting through the day is enough
- Use your patient diary to note times where you feel more active. If you are an early bird, use the morning for small chores and activities, and the afternoon for resting
- Do grocery shopping online, or ask someone to help you
- Batch cook meals when you are feeling less tired, and freeze them for when you need them
- Find time to relax every day, for example, by meditating, doing breathing exercises, listening to music, or reading a book
- Complementary therapies may be used alongside medical treatment. Small studies have found that yoga, acupuncture, meditation, and massage can improve fatigue in cancer patients. Before you use complementary therapy, talk to your doctor or nurse.
You can learn more about complementary therapies by watching our “Complementary Therapies” video
My fatigue is affecting my relationships; what can I do?
If you have fatigue, you might feel too tired to do what you usually do to look after yourself. You might become more dependent on your partner, family, and friends. This can feel frustrating.
You might also feel guilty or embarrassed that you can’t do as much as you used to. This can put stress on your relationships.
Coping with the changes in your relationship can be difficult. Feelings of loss and sadness are common, as well as anger and guilt.
Fatigue can also affect your sex life, as you may not have enough energy for sex. A diagnosis of myeloma can also have a psychological and emotional impact that may affect your capacity for sexual feelings and desires.
But there are things you can do to help your relationships. You might find it helpful to:
- Learn more about fatigue together with your partner, family, and friends
- Talk about how you feel
- Think about which activities you want to do for yourself and which ones someone else could do for you. It’s not always easy to ask for help when you’re used to being independent. Still, partners, family, and friends will usually want to help.
- Develop a wider support network including other family members, friends, or health professionals
Try to make time for family activities, such as holidays and enjoying time together. You may not feel up to some activities that you have done together in the past. But it could be a chance to try something new.
In some cases, myeloma can bring positive changes to relationships. It may give you a shared focus and help you reassess what’s important. You may have an increased desire to spend quality time with your family and friends, strengthening relationships.
For more information on managing fatigue, you can read the Myeloma UK Fatigue Infoguide or the Myeloma UK Infopack for living well with myeloma. You can also watch Lynn’s story about coping with fatigue.