If you have chronic lymphocytic leukemia (CLL), you may already know the intense fatigue that can be part of life with the condition.
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 are getting enough sleep
- make it hard to focus on completing a task
- 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 the body, which can make you feel extra tired.
- CLL can reduce the number of healthy white blood cells in your body, which are essential to fighting infections. With fewer white blood cells, you’re more prone to infections, which take a lot of energy to fight.
- 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.
Treatment is another reason for CLL fatigue.
Chemotherapy is a common treatment to target cancer cells. This treatment also destroys normal healthy cells. The extra energy used to repair normal cells is believed to add to fatigue.
Medications used to treat nausea or pain often cause fatigue and drowsiness.
It’s important to explore what else might be contributing to your fatigue. The following issues can worsen fatigue.
Low iron or B-12 levels
Your doctor can check your iron and B-12 levels with blood tests. Treatment can include dietary changes or supplements.
Hypothyroidism is when your thyroid isn’t producing enough thyroid hormone. This can slow 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.
Living with pain takes a major toll on your body and energy level. Speak to your doctor or pharmacist if your pain is not well managed.
The timing or dose of pain medication 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 the rest of 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.
Fluids in your body help maintain the right blood volume and bring nutrients around the body. When you aren’t drinking enough, it can worsen fatigue.
You can try drinking more fluids to see if this improves your energy level. Fluids include water, tea, milk, and juice.
Not eating enough
Our bodies rely on having enough energy and nutrients from food. Food is fuel for our bodies, and without enough fuel you can feel sluggish. Some foods are better for giving our bodies longer lasting energy.
Speak to a dietitian if you have questions about nutrition.
Feeling so tired all the time can make everything more difficult. Here are a few things that may help:
- 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 used to do before CLL. Think about how you would talk to a friend who is dealing with fatigue, and try to show yourself that same level of compassion.
- Prioritize your energy. Consider what things are worth using your limited energy for. 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 meditation, massage, or yoga can improve focus and energy levels.
When your energy level is low, being active might seem like the last thing you want to do. Surprisingly, many people find that moving more actually boosts their energy. Even some gentle stretching, going for a walk, or moving to your favorite song may help you feel better.
Being active can also improve 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:
- Have 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 switch to decaf coffee and caffeine-free types of tea and soda to see if that makes a difference.
- Have a relaxing bedtime routine. This might include reading or taking a bath.
- Avoid screen time or exercise too close to bed. They 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.
Eating something every 3 to 4 hours is best to fuel your body throughout the day. If you have a low appetite, you might find eating something small every 2 to 3 hours works better.
Eating a source of protein with meals and snacks can help sustain energy levels.
Sources of protein include:
- meat, chicken, and fish
- milk, yogurt, and cheese
- beans and lentils
- tofu and soy products
- nuts and seeds
It can be hard to eat enough if you aren’t feeling well or don’t have the energy to make 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 you food.
- 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 will have ingredients at home and won’t need to use up energy thinking about what to make.
- Buy foods that require less prep work. Pre-cut fruits and veggies and pre-shredded cheese are a few examples.
- Do meal and snack prep at times when you have more energy.
- A dietitian can help 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.
There are things they can do to help you feel better. There are also strategies to help you cope with the constant fatigue. Get enough sleep, be active, eat well, and seek support as needed to help you during this journey.