Cancer-related fatigue is an extremely common symptom of blood cancers like leukemia. In fact, the American Cancer Society reports that 80 percent to 100 percent of people with cancer report experiencing fatigue. Cancer-related fatigue can come on suddenly, and it has been described as being grueling and overwhelming. This kind of fatigue isn’t just a feeling of tiredness that a good night’s sleep will fix — it’s excessive, persistent exhaustion that interferes with a person’s daily activities and their quality of life. It may even be present before being diagnosed with leukemia. This fatigue often worsens while undergoing treatment and persists for months (or even years) after you have finished treatment.
Here, we will take a closer look at fatigue in leukemia, including what causes it and how it may be managed — both at home and with the help of your health care team.
Even with a diagnosis of leukemia, people still have to manage their everyday lives and responsibilities. Many MyLeukemiaTeam members have found that fatigue greatly impacts their day-to-day living.
As one member shared, “Fatigue has been my number one problem since diagnosis and starting meds 12 years ago! Still haven’t figured out how to live with it. I practically feel it all the time.”
Another wrote, “My chronic lymphocytic leukemia makes me so tired some days that I can’t function.”
One member even shared that fatigue means they “get about three good hours a day.”
Some MyLeukemiaTeam members have shared that they try to hide their extreme fatigue from family, friends, and colleagues. “My family doesn’t understand how fatigued I really am,” wrote one member, “because I put on a smile and act as if I’m OK during family get-togethers. They don’t see the new normal and how I really feel.”
Another member shared that they don’t discuss their fatigue because they “don’t want to bother anyone or complain about my fatigue.”
Loved ones are also deeply affected by the changes that cancer and its symptoms can bring. Friends, family members, and caregivers often want to be supportive. However, some may act “odd” or different after learning of their loved one’s diagnosis. Some people may feel guilty because they don’t know how to help, or they may simply not know what to say.
Extreme fatigue can be very difficult for children to comprehend in particular. “Fatigue is especially hard for my 10-year-old to understand,” a parent on MyLeukemiaTeam commented.
Pain, particularly if it’s chronic, may prevent an individual from getting quality sleep. It may also cause a person to eat less and be less active. Chronic pain may also lead to depression. All of these can contribute to feelings of exhaustion and fatigue.
Cancer and its treatments can impact your ability to be physically active. Lack of exercise can cause an individual to experience fatigue, especially if they’re used to a large amount of physical activity.
Good nutrition is necessary to keep the body working efficiently. Leukemia and its treatments may cause a loss of appetite, leading to unwanted weight loss and a lack of quality nutrition. While it is crucial that people with cancer get the right nutrients, this can be a challenge. Nausea and vomiting, mouth sores, and loss of smell and taste (due to some types of chemotherapy) may all get in the way of maintaining a nutritious diet.
Anemia occurs when an individual has a low red blood cell count. Treatments for leukemia can destroy too many of these cells, or the body may not supply enough of them. Fatigue and weakness are two of the most common symptoms of anemia.
Fatigue can vary depending on the type of leukemia you have. Hormonal changes may occur in early stage leukemia — particularly chronic lymphocytic leukemia (CLL). These hormonal changes, as well as the emotional impacts of a cancer diagnosis and its treatments, can contribute to fatigue.
Insomnia, lack of sleep, interrupted sleep, and overall poor quality of sleep can cause fatigue. Sleep can be lost due to pain, medications, stress, and anxiety, among other reasons.
Some medications taken to manage leukemia symptoms, such as antidepressants and pain relievers, can cause extreme fatigue.
Many factors can trigger cancer-related fatigue, both physical and psychological. Treating your fatigue might require a combination of approaches depending on its cause. Talk openly and honestly with your oncologist or health care team about how to best manage your fatigue and improve your well-being.
For people with leukemia, things like doing household chores, taking a walk, and gardening can be exhausting. As one member shared, “This is exactly what happens to me. The other day I did six loads of laundry, organized cupboards, mopped the floor, etc. Then, for the next two days, I couldn’t do anything.”
However, as another member wrote, “Any type of physical activity will help with the fatigue. Take it one day at a time.”
People with extreme fatigue may seek physical therapy to help create a personalized exercise plan. A physical therapist can help you strengthen your muscles, alleviate pain, and generally manage leukemia symptoms and the side effects of treatment. Note that a doctor should always be consulted before starting a new exercise program.
Nutrition is critical when you have leukemia and extreme fatigue. If malnutrition may be contributing to your fatigue, your doctor may refer you to a licensed dietitian. This specialist can consult with your health care team to create a diet plan with the right nutrients, calories, and fluids.
MyLeukemiaTeam members have reported trying different diets to help with fatigue, including gluten-free diets and eating foods containing a lot of nutrient-rich greens. As with exercise programs, it is important to consult with your health care team before trying any new diet plans or making drastic changes to your diet.
MyLeukemiaTeam members frequently discuss the medications and supplements they’re taking. One MyLeukemiaTeam member shared their experience trying supplements to help with their fatigue: “My fatigue is getting better (or, should I say, less) these days. I started taking Balance of Nature Fruits and Veggies supplements two months ago. I have had CLL for about eight years. I don’t know if the Balance of Nature is what is helping, but time will tell. Right now, I am just enjoying a bit more awake time.”
Some of the vitamins, supplements, and medications our members have shared that help with fatigue include:
It’s vital to consult a doctor before taking any medications or supplements, as they can react negatively with your cancer treatments.
It can be tempting to push yourself on your “good” days — times when your fatigue lessens and you have more energy. However, overexerting yourself can lead to worsened fatigue afterward. As one member shared, they felt “fatigue after two hours working in the yard.”
Another member wrote that they “found the same pattern of fatigue even a few years before the diagnosis. I could barely get through my morning clients, and after I did, it was time to hit the couch. Sometimes, I would get in the car to go to the mall, and I would have to make a U-turn when I was halfway there.”
One member responded with the following: “I have learned to work around it and rest when I need to.” As this member shared, you don’t have to let fatigue limit you. Instead, find ways to work around fatigue in your daily life — and take breaks when necessary — so you can finish daily tasks without becoming even more fatigued.
A doctor and health care team can offer more ideas to help you manage fatigue and improve your energy levels. They can also provide referrals to specialists like physical therapists and dietitians. It’s important to tell your health care team about all supplements, vitamins, and medications you are taking so they can interpret all risk factors to prevent unwanted side effects.
Additionally, an oncology specialist may be able to adjust your medication dosages. They can even recommend changing treatments if your leukemia treatments are contributing to extreme fatigue. As one member wrote, “I shared my concern about fatigue. He took me off allopurinol for now.”
On MyLeukemiaTeam, you’ll meet other people with leukemia, as well as their loved ones. Here, members who understand life with leukemia come together to share support, advice, and stories from their daily lives.
Have something to add to the conversation? Share your experiences and thoughts in the comments below or by posting on MyLeukemiaTeam.