Fatigue and myeloma

Fatigue is one of the most common, difficult and complex symptoms of myeloma, and is often called ‘cancer-related fatigue’ or CRF. This type of fatigue is different from the everyday tiredness experienced by people who don’t have cancer or other ongoing health conditions, and can have a big impact on your quality of life. 

You’ve probably already discovered that the type of fatigue associated with myeloma can be persistent and distressing, doesn’t necessarily improve with rest or sleep, and isn’t necessarily related directly to anything you’ve done (or haven’t done).

We have outlined some key information about fatigue and myeloma on this webpage. If you would like to read more, see our infosheet below.

What does cancer-related fatigue feel like?

Cancer-related fatigue often causes symptoms beyond tiredness. You may notice:

• lower energy levels 
• feeling weak or lethargic
• limbs feeling heavy 
• needing to sleep more than usual 
• difficulty sleeping 
• difficulty completing everyday tasks 
• reduced concentration and/or memory  
• brain fog 
• irritability 
• mood swings and tearfulness 
• being short of breath 
• less sex drive 
• less appetite 
• it’s harder to socialise 
• feeling isolated. 

It can be difficult to work out what’s a sign of cancer-related fatigue and what might be caused by other health problems. Living with myeloma can also impact your mental health, causing some of these symptoms. Always talk to your treating team about any symptoms that are new or becoming worse for you. 

When I’m really tired, I become irritable and snappy. I’ve explained this to family and friends and asked them to forgive me in advance for what might come out of my mouth sometimes!

-Mai, South Australia

What causes fatigue in myeloma?

Fatigue in myeloma may have many different causes and it’s often a combination of these that sap your energy. 

• Symptoms and complications of myeloma itself 
• Side effects of myeloma treatments 
• Difficulty eating and drinking
• The emotional impact of myeloma
• Problems sleeping
• Being less active. 

Once I acknowledged the emotional toll of my myeloma diagnosis and started talking to a psychologist to help my mood, I found that my fatigue improved as well. Don’t delay in asking for help if you need it. Learning to live with myeloma is a big adjustment and it’s very ‘normal’ to need help doing that.

– Veda, Western Australia

What can help with fatigue?

Treating and managing your fatigue depends on its causes, and will usually involve a combination of medical treatment and self-help strategies. It’s best to start by talking openly with your treating team about your fatigue. They can then help you to work out the underlying causes and what’s most likely to help you most. 

• Treating underlying problems like anaemia (low red blood cells), reduced kidney function or infection 
• Adjusting your myeloma treatments (Remember that you always need to talk to your doctor before making any changes to your treatment dose or schedule)
• Controlling your myeloma
• Managing your pain
• Emotional support
• Eat well and keep up your fluids
• Rest Planning regular rest or nap times during the day is an important part of managing fatigue for most people with myeloma
• Exercise
• Pace yourself so that you don’t end up exhausted (often from doing the things that are least important to you)

I was so physically tired; it was like dragging my arms and legs through molasses. I saw an exercise physiologist who tailored a plan for me – it’s really helped me to rebuild my muscle strength and has also helped to reduce that physical sense of tiredness. To my surprise, my sleep has improved too.

– Aris, New South Wales 

Sleep

Sleep helps you to recharge physically, mentally and emotionally. Getting enough good quality sleep when you’re able to (and we understand how difficult that can be), is an important tool in helping you to manage fatigue and many other parts of living with myeloma

What causes sleep problems in myeloma? Difficulty falling asleep or staying asleep, or insomnia, is a very common problem for people with myeloma. 

These sleeping problems may be caused by:

• steroid medicines, which are included in most myeloma treatment combinations 
• stress and anxiety 
• myeloma pain, which may include muscle cramps and spasms. 

What can help? These tips may help you to get more restful sleep: 

• Do your best to get into a regular sleep pattern where you go to bed and get up at the same time each day. 
• Exercise during the day, including gentle exercise, can help you to fall asleep, stay asleep longer, and improve the quality of your sleep. 
• Avoid caffeine for at least 6 hours before bed. 
• Stop using technology at least 1 hour before going to bed — and definitely don’t use devices in bed. 
• Your bedroom should be like a cave: cool, quiet and dark! 
• If you can’t sleep, stay in bed and listen to light music or a sleep story, read, or do breathing exercises. Alternatively, get up and do a relaxing activity, such as gentle stretching, until you feel sleepy again. 
• Talk with your doctor if you are still having trouble sleeping, or if pain is making it difficult to sleep. They can see if there are ways of better managing your pain, or if a short-term sleep aid might be helpful.

I use the ‘Calm’ app on my phone and choose a meditation or sleep story that feels right for me at the time to help ease my racing mind and drift off to sleep.

– Patricia, Victoria 

Keeping an energy diary

It’s true that both rest and exercise (and other meaningful activities) can help you manage fatigue – so how do you know when you need more or less of each? An energy diary is a useful tool to help work out the most beneficial balance of rest and activity for you. This balancing act between rest and activity is called pacing.

You don’t need to make your energy diary complicated (that would be too tiring!), just jot down these things a few times a day:

• time of day 
• your fatigue score — where 1 is energised and 10 is very fatigued 
• symptoms or side effects you’re experiencing 
• medicines recently taken  
• when and what you had last eaten 
• any exercise or activities you’d just done 
• how you’re feeling emotionally 
• how you slept the night before 
• anything else that might be affecting your energy levels 
• any strategies you’ve tried that have helped your energy levels. 

After a week or so, look for patterns. Is there a time of day when you have more energy? Is there a time when you are more fatigued? Do either of these seem to relate to what you have been eating or doing? Is there anything that seems to particularly make your fatigue better or worse? 

Once you start to see some patterns, you can use this information to adjust your activities. 

Keeping an energy diary has helped me to see just how much short daytime naps and high protein snacks help my energy levels. Now I know I can use these tools to quickly restore my energy when it’s flagging, or to give myself an extra boost before tackling a task that takes more effort.

– Jun, Australian Capital Territory