CLL Chronic Exhaustion: Causes and Management Strategies

“CLL fatigue isn’t ordinary tiredness,” says Benjamin Heyman, MD, a hematologist at City of Hope Orange County in Irvine, California. “It’s a deep, whole-body exhaustion that doesn’t match what you’ve been doing and often doesn’t go away with sleep. It is a common and overlooked symptom in CLL.”

“Fatigue can occur at any phase of the disease, whether during active surveillance, treatment, or after treatment,” says Jennifer Wilson, LCSW, senior information specialist at Blood Cancer United. “If you notice a significant change in your fatigue level, or if your fatigue is accompanied by other new symptoms, it is important to notify your treatment team for guidance. You do not need to wait until your next appointment to contact your treatment team if you are concerned about a new symptom.”

What Causes CLL Fatigue

Fatigue in CLL is often due to multiple factors. The underlying cause may be related to the cancer itself, your treatment, a secondary (unrelated to CLL) condition, or to a combination of things.

Another cause of fatigue is systemic inflammation resulting from your immune system’s response to the cancer. The presence of CLL cells triggers the release of infection-fighting substances called cytokines into the bloodstream. “Cytokines are signaling proteins that act on the brain and muscles, producing exhaustion, low motivation, and mental fog,” says Heyman.

“The overall disease burden also plays a role,” says Heyman. CLL rapidly produces very large amounts of abnormal white blood cells, and this process pulls energy and nutrients from other normal body functions. “Enlarged nodes, a big spleen, and an immune system not functioning properly — all require energy and can exacerbate fatigue.”

Secondary Causes of Fatigue

Aside from cancer itself, other health conditions can underlie the fatigue. “It is important to evaluate for other common causes for fatigue before attributing it to CLL, as these may be reversible and can improve symptoms,” says Heyman.

• Infection “For some people with CLL, infections may occur more often and recovery may take longer, which can add to feelings of fatigue,” says Wilson.
• Vitamin and Mineral Deficiencies These include iron, vitamin D, and vitamin B12.
• Dehydration and Poor Nutrition This can also include not eating enough calories.
• Cancer Treatment “Certain CLL treatments and medications can contribute to fatigue,” says Wilson. The fatigue may linger on even after the treatment has been completed.
• Stress and Anxiety “Around the time of diagnosis, often the stress and anxiety of adjusting to the diagnosis can cause significant fatigue,” says Jennifer Brown, MD, PhD, director of the CLL Center at Dana-Farber Cancer Institute in Boston and secretary of the American Society of Hematology. “This can also interfere with sleep, which then worsens fatigue.”
• Poor Sleep Quality In addition to stress, Dr. Brown says that night sweats, another common CLL symptom, can disrupt restful sleep and lead to daytime fatigue. You might also have a separate sleep disorder such as insomnia or sleep apnea.
• Other Medical Conditions These include heart, kidney, thyroid or liver disease, and diabetes. “By the time they develop CLL, many people already have other ongoing medical conditions,” says Jennifer Huang, MD, a blood cancer specialist at the Fred Hutch Cancer Center in Seattle and an assistant professor of hematology and oncology at the University of Washington School of Medicine.

“Fatigue is one of those symptoms where it could be related to CLL or it could be something else, or it could be a combination of both,” says Dr. Huang. “And the best thing to do is to step back and really think about what are all the possible things that can cause fatigue, so we can make sure to treat all of the reasons and not just one of the reasons.”

Tips for Conserving Energy

“Managing your overall health and CLL can help improve fatigue,” says Wilson. “In some cases, CLL treatment may help reduce fatigue, when it is related to the disease itself.”

Several other strategies may improve cancer-related fatigue.

Keep a Diary

Optimize Sleep Quality

As much as possible, maintain a regular sleep schedule. “Aim for seven to eight hours of sleep per night, and go to bed and get up at the same times,” says Heyman. He also advises skipping caffeine after midafternoon and not exercising late in the evening.

It is okay to nap if you’re tired, but try to limit naps to one per day and not longer than 20 minutes. Too much daytime sleeping can interfere with nighttime rest.

Pace Yourself

Prioritizing your daily tasks will help ensure that you accomplish what’s most important. “Sometimes people feel like they have more energy in the morning, but some will feel like they have more energy in the afternoon,” says Huang. “The key is getting in tune with one’s body and observing when you feel your best, and then trying to prioritize important tasks during that period of time.”

Exercise

“When I talk to patients about increasing physical activity, I’m not talking about running a marathon,” says Huang. “It can be just taking a 20-minute walk once a day, or maybe doing a 10-minute walk in the morning, then another 10-minute walk in the afternoon. Sometimes breaking up the physical activity makes it more manageable.”

Pay Attention to What You Eat and Drink

Staying hydrated is also important, as dehydration can make you feel even more tired. Try to drink plenty of water throughout the day.

Complementary Options

Discuss the use of complementary therapies with your healthcare team, especially if you want to try supplements. Some products may interfere with cancer treatment.

When to See Your Doctor

Fatigue often affects your everyday life, including the ability to work, socialize, and even perform routine tasks. Heyman says to discuss it with your provider as soon as you begin experiencing symptoms. “Bring up fatigue at every visit,” he says. “The only way your treating physician will know about it is if you discuss it with them.”

He also advises contacting your doctor if you develop the following symptoms:

• Your fatigue is getting worse.
• You can’t get out of bed for most of the day.
• You get short of breath with activity.
• You also have fevers, drenching night sweats, or unintentional weight loss.
• You notice new bruising, bleeding, or are looking unusually pale.

“If a medication might be causing fatigue, it can be adjusted or removed,” says Brown. “Anemia is most commonly due to iron deficiency or the CLL itself, and this can be tested and treated appropriately.”

If you’re currently in active surveillance for CLL, fatigue can indicate that the cancer is progressing and it may be time to begin active treatment. “If all reversible causes are treated and fatigue is still persistent, then starting CLL-directed therapy may need to be considered,” says Heyman.