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 experience fatigue. Cancer-related fatigue can come on suddenly and be 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 your daily activities and quality of life. This fatigue might even show up before you’re diagnosed with leukemia, and it often gets worse while you’re undergoing treatment and continues for months (or even years) after you’ve finished treatment.

Here, we take a closer look at fatigue with leukemia, including seven causes and four ways it can be managed to have less of an effect on your daily life.

How Fatigue Affects People With Leukemia

Living with leukemia and carrying on with everyday responsibilities can be hard enough without also having extreme fatigue. Many MyLeukemiaTeam members have shared that fatigue greatly affects their day-to-day living.

As one member said, “Fatigue has been my No. 1 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 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.”

Extreme fatigue can be very difficult for children, in particular, to comprehend. “Fatigue is especially hard for my 10-year-old to understand,” a parent on MyLeukemiaTeam commented.

What Causes Fatigue in Leukemia?

Extreme fatigue is a common symptom of leukemia and leukemia treatment, including chemotherapy and radiation therapy. Knowing what causes fatigue with leukemia can help you better understand how it can be managed. Below are seven common causes of fatigue with leukemia and how they may affect your quality of life.

1. Pain

Pain from leukemia, especially if it’s ongoing, can disrupt your sleep, reduce your appetite, and limit your activity. Chronic pain may also lead to depression. These factors can all contribute to feelings of exhaustion and fatigue.

2. Lack of Exercise

Cancer and its treatments can affect your ability to be physically active. Lack of exercise can cause fatigue, especially if you’re used to a lot of physical activity.

3. Diet

Good nutrition is necessary to keep the body working efficiently and keep you alert. Leukemia and its treatments may cause a loss of appetite, leading to unwanted weight loss and a lack of quality nutrition. In addition, nausea and vomiting, mouth sores, and loss of smell and taste (possible side effects of some leukemia treatments) may all get in the way of maintaining a nutritious diet.

4. Anemia

Anemia with leukemia can worsen fatigue. Anemia occurs when you have 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. Your doctor may order a blood test to check if you have anemia.

5. Hormonal Changes and Mood Changes

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.

6. Sleep Difficulties

Insomnia, lack of sleep, interrupted sleep, and overall poor quality of sleep can cause fatigue. Sleep loss can be a result of pain, medications, stress, and anxiety, among other reasons. Night sweats, which can be a symptom of leukemia itself or treatments, might also disrupt sleep.

7. Medications

Some medications taken to manage leukemia symptoms, such as antidepressants and pain relievers, can cause fatigue. After treatment is finished, it may take six months to a year for chemotherapy-related fatigue to resolve.

Fatigue With Chronic Lymphocytic Leukemia

Extreme fatigue is one of the most common symptoms of CLL, and it can occur at every stage of CLL. The fatigue can show up quickly — many people experience fatigue when they are diagnosed with CLL. Many people with CLL experience fatigue during the “watch-and-wait” period.

Fatigue with CLL is thought to be a result of high levels of chemicals produced by white blood cells in response to inflammation. Chronic inflammation is a common part of living with cancer.

Although there are both medical and nonmedical treatment options for CLL-related fatigue, the best way may come down to treating the CLL itself. If you’re experiencing extreme fatigue with CLL, talk to your doctor. They may revisit your treatment plan to figure out the most effective way to address the CLL and the overwhelming fatigue to help you live better with CLL.

Managing Fatigue With Leukemia

Both physical and psychological factors can trigger cancer-related fatigue. Managing your fatigue might require a combination of approaches, depending on the cause. Talk openly and honestly with your oncologist or health care team about how to best manage your fatigue and improve your well-being. Here are four management tips to consider when having those conversations.

1. Add Exercise and Physical Therapy

For people with leukemia, activities 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.”

Exercise might help combat your fatigue. “Any type of physical activity will help with the fatigue. Take it one day at a time,” one member shared.

Consider contacting a physical therapist to help you create a personalized exercise plan. Physical therapy can help you strengthen your muscles, ease pain, and manage leukemia symptoms and treatment side effects. Be sure to talk to your doctor before starting a new exercise program.

2. Eat Nutritious Foods

Nutrition is critical when you have leukemia and extreme fatigue. If malnutrition is contributing to your fatigue, your doctor may refer you to a licensed dietitian. A dietitian can consult with your health care team to create a diet plan with the right nutrients, calories, and fluids for your needs.

MyLeukemiaTeam members have reported trying different diets to help with fatigue, including gluten-free diets and eating foods containing nutrient-rich greens. As with exercise programs, consult with your health care team before trying any new diet plans or making drastic changes to your diet.

3. Consider Taking Vitamins, Supplements, and Medications

Many MyLeukemiaTeam members have tried 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’m just enjoying a bit more awake time,” one member shared.

Some of the vitamins, supplements, and medications MyLeukemiaTeam members have shared that help with fatigue include:

• Vitamin B12
• Vitamin D3
• Iron supplements

It’s vital to consult a doctor before taking any medications or supplements, as they can react negatively with your cancer treatments.

4. Know Your Limits and Take Breaks

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.

Speak With a Doctor

Your 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. Make sure to tell your health care team about all supplements, vitamins, and medications you’re taking to prevent unwanted side effects and drug interactions.

Additionally, an oncology specialist may be able to adjust your medication dosages to help reduce fatigue. They may 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 one of my medications for now.”

Find Your Team

MyLeukemiaTeam is the social network for people and their loved ones with leukemia. On MyLeukemiaTeam, more than 18,000 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

Are you living with leukemia and fatigue? Do you have fatigue management tips? Share your experience in the comments below, or start a conversation by posting on your Activities page.