If you have chronic lymphocytic leukemia (CLL), you may already know the intense fatigue that can be part of life with this disease.

Fatigue is normal in people with CLL, but it can be frustrating to feel so exhausted all the time. The cancer itself can cause fatigue, or fatigue can be a side effect of some treatments. For some people, fatigue continues even after treatments are finished.

There are other causes of fatigue to consider too. Managing those will improve how you feel. There are also strategies that may help you better cope with fatigue overall in your day-to-day life.

The fatigue associated with CLL is different from just feeling tired. When you feel tired, having some quiet time or getting a good night’s sleep can help you feel like yourself again. When you have CLL-related fatigue, it doesn’t go away so easily.

In general, the fatigue associated with CLL tends to:

  • make it difficult or impossible to do what you used to do in a day
  • make you feel weak and completely out of energy
  • not go away even if you’re getting enough sleep
  • make it hard to focus on completing tasks
  • potentially affect your mood and overall sense of well-being

There are several reasons why having CLL can cause major fatigue:

  • CLL increases inflammation in your body, which can make you feel extra tired.
  • CLL decreases the number of red blood cells in your body. Red blood cells carry oxygen throughout your body, and a lack of oxygen can make you feel short of breath and out of energy.
  • CLL can reduce the number of healthy white blood cells in your body, which are essential for fighting infections. With fewer white blood cells, you’re more prone to infections, which take a lot of energy to fight.
  • CLL can also produce cytokines, which contribute to fatigue.

Treatment is another reason for CLL fatigue.

Chemotherapy is a common treatment that targets cancer cells but also destroys healthy cells. The extra energy used to repair healthy cells is believed to add to fatigue.

Additionally, medications used to treat nausea or pain often cause fatigue and drowsiness.

It’s important to explore the other possible causes of your fatigue. The following issues can make fatigue worse.

Low iron or B-12 levels

Your doctor can order blood tests to check your iron and B-12 levels. Treatment can involve dietary changes or supplements.

Thyroid problems

If you have hypothyroidism, it means your thyroid isn’t producing enough hormones. This can slow your heart rate and cause fatigue. Your doctor can order blood work to check your thyroid function.

Oral medication with synthetic thyroid hormones can get your levels back to normal.

Pain

Living with pain takes a major toll on your body and your energy level. Talk with your doctor or pharmacist if you’re experiencing pain and need help managing it.

If you’ve been taking pain medication and it’s not helping, the timing or dose may need to be adjusted. Physical therapy and counseling can also play a role in pain management.

Depression, stress, or anxiety

Many people with cancer also experience depression, anxiety, or high stress levels. Your mental health can affect how your body feels.

A mental health counselor can be an important part of your healthcare team. They can work with you to develop coping strategies to help you feel your best.

Dehydration

Fluids in your body help maintain the right blood volume and transport nutrients around your body. If you aren’t drinking enough fluids, your fatigue may become worse.

You can try drinking more fluids, such as water, tea, milk, and juice, to see whether your energy level improves.

Not eating enough

Your body relies on getting enough energy and nutrients from food. Food is fuel for your body, and without enough fuel, you can feel sluggish. Some foods are better for giving your body longer-lasting energy.

Consider talking with a registered dietitian if you have questions about nutrition.

Feeling so tired all the time can make everything more difficult. Here are a few tips that may help you manage fatigue:

  • Be kind to yourself: Your body is dealing with a lot, and it can be hard to accept that you may not be able to do all the things you could do before you had CLL. Think about how you would talk with a friend who was dealing with fatigue, and try to show yourself that same level of compassion.
  • Prioritize your energy: Consider which tasks are worth the use of your limited energy. Some tasks may be more enjoyable or more worthwhile than others.
  • Accept help from others: Remember that people in your life will genuinely want to support you. Make a list so that when someone asks what you need, you can give them a specific task.
  • Pace yourself: Plan anything that you really want or need to do for a time of day when you tend to have more energy. Listen to your body and take breaks as needed.
  • Consider alternative therapies: Some people find that meditation, massage, or yoga can improve their focus and energy levels.

When your energy level is low, being active might seem like the last thing you want to do. But many people find that moving more actually boosts their energy. Even doing some gentle stretching, going for a walk, or dancing to your favorite song may help you feel better.

Being active can also improve your sleep.

You may want to work with an exercise specialist. A physical therapist or kinesiologist can help you find ways to move your body that feel best for you.

Sleep doesn’t fix this level of fatigue, but a good night’s sleep is still important for your health. When you don’t get enough sleep, your fatigue will be worse. Sleep also plays an important role in helping your body heal.

Here are some tips for better sleep:

  • Maintain a consistent sleep routine. Do your best to go to bed and wake up around the same time every day.
  • Try to limit naps to an hour or less. If you can, avoid napping too late in the day.
  • Consider whether caffeine is affecting your sleep. You could try switching to decaf coffee and caffeine-free types of tea and soda to see whether that makes a difference.
  • Create a relaxing bedtime routine. It might include reading or taking a bath.
  • Avoid screen time or exercise too close to bedtime. These activities can be stimulating and make it harder for your brain and body to settle down.

Yes. The types of foods you eat and the timing of your meals can affect how you feel.

It’s best to eat something every few hours to fuel your body throughout the day. If you have a low appetite, you might find that eating something small every 2 to 3 hours works better.

Eating a source of protein with each meal and snack can help sustain your energy levels.

Sources of protein include:

  • meat, chicken, and fish
  • milk, yogurt, and cheese
  • beans and lentils
  • tofu and other soy products
  • nuts and seeds
  • eggs

It can be hard to eat enough if you aren’t feeling well or don’t have the energy to prepare meals. Here are some suggestions:

  • Have groceries or meals delivered to your home.
  • Ask for help with preparing meals. Accept offers from people who want to make food for you.
  • Meals don’t need to be fancy. A sandwich, apple slices, raw veggies, and a glass of milk is an example of a simple, well-balanced meal.
  • Plan meals so you’ll have ingredients at home and won’t need to use up energy thinking about what to make.
  • Buy foods that require less prep work. Precut fruits and veggies and pre-shredded cheese are a few examples.
  • Prep meals and snacks ahead of time, at times when you have more energy.
  • Consider consulting a dietitian if you have concerns about meeting your nutrient needs.

Dealing with fatigue when you have CLL can be very challenging. Make sure to keep your healthcare team updated on how you’re feeling. They may be able to help you feel better.

Healthy lifestyle habits such as getting enough sleep, getting regular physical activity, eating well, and seeking support as needed can also help you cope with constant fatigue.