“I’m tired of saying, ‘I’m tired from CLL,’” shared a MyLeukemiaTeam member of their experiences living with chronic lymphocytic leukemia.

If you can relate to that statement, you’re not alone. People with CLL commonly report fatigue. On My LeukemiaTeam, members have described fatigue at different stages of the disease.

Some notice fatigue during early diagnosis:

• “I’m in early-stage CLL, and most days, I have extreme fatigue. Every few days, I have a good day and accomplish things, making me feel so good. And then I plummet again.”
• “I was diagnosed with CLL two months ago. I am 71 years old and have always been a very active person, including running my own business. I’ve felt myself going downhill for over a year with very low energy.”

Others continue to have fatigue during remission (when signs of cancer disappear):

• “My CLL is in remission. However, my fatigue is not, and I don’t know if it will ever be. I’ve learned to make the best of my fatigue-free moments and pace myself while fatigued. This certainly appears to be the new normal.”
• “I’m in remission with CLL, but fatigue is a daily part of my life. It’s good to know I’m not the only one suffering from fatigue. There are days I wake up tired.”

While there’s not always an easy solution to fatigue, there are several steps you can take to fight fatigue and feel more energetic. Here are some factors to consider if you’re tired of being tired.

1. Eat a Nutritious Diet

“Fatigue is the most discomforting issue I face with CLL. Sometimes, I’m almost totally immobilized,” shared one member. “However, the other issue contributing to fatigue and loss of energy and weight is appetite loss. I literally have to talk myself through even a breakfast-size plate of food.”

A small pilot study on people in remission from non-Hodgkin lymphoma found that eating better led to reduced fatigue. During the first four sessions, participants met remotely with a dietitian to discuss one food group per week. The researchers focused on improving diet quality, not counting calories.

Daily goals included eating:

• One serving of fatty fish
• One serving of nuts or seeds
• Two servings of fruit (at least one fresh)
• Three servings of whole grains
• Five servings of vegetables (of different colors)

Participants used a checklist to keep track of these changes. By following these goals, they successfully increased their intake of anti-inflammatory omega-3 fatty acids and micronutrients like lycopene and vitamin C. They also reported having less fatigue.

While there’s no specific diet proven to cure CLL-related fatigue, eating a nutritious diet to maintain a healthy weight is a crucial step to feeling your best. Meeting with a registered dietitian nutritionist either in-person or online can help you get the support and medical advice you need to make positive changes.

2. Be More Physically Active

“I’ve had CLL for approximately 20 years,” said a MyLeukemiaTeam member. “I really believe that exercising every day is extremely important. … I found that exercising despite fatigue helps me to overcome fatigue.”

Another member explained their fatigue-fighting routine: “I have a regular exercise routine to combat my CLL. I start my day with a seven-mile walk beginning at 6 a.m. After breakfast, I complete my morning exercises. I do 35 minutes of calisthenics, including jumping jacks, pushups, situps, planks, and various leg exercises three days a week. I do 30 minutes of weight-lifting exercises three days a week. My routine serves me well and keeps me from focusing on feeling tired.”

There’s no need to follow the above high-intensity workout (or any specific type of workout) to harness the energizing effects of physical activity. But making an effort to move more can help give you a boost when you’re feeling sluggish. Studies show that in general, moderate aerobic activity three days a week reduces cancer-related fatigue.

A qualified exercise professional like a physical therapist or trainer with cancer-specific experience can help you find a program that makes sense for you.

3. Get Plenty of Rest

It’s not always easy to tell the difference between cancer-related fatigue and tiredness from working a lot or getting older. Many people with CLL also experience side effects like night sweats or anxiety that keep them from getting a restful night’s sleep.

One MyLeukemiaTeam member wrote, “I work at a very stressful job for over 50 hours a week. I never know if it is my work or my CLL that causes fatigue. I wish I could figure it out. I just know that I never feel rested.”

“I’m 83 years old and have had CLL for 10 years,” said another member. “Fatigue is one of the worst things I deal with. … I still mow my lawn and do all my household chores and outside work, just not as fast and with a lot of rest breaks.”

Some of the defining traits of cancer-related fatigue include:

• Tiredness that lasts for more than two weeks
• Weight loss
• Reduced fitness levels during activities
• Trouble concentrating

It’s important to listen to your body and rest when you need to, taking short naps during the day or getting to bed earlier so you can clock a little extra sleep time.

“I’ve decided that fatigue is part of the CLL, and naps are part of the treatment,” shared one member.

“I’m retired, so I can take a power nap or two when fatigue makes it necessary. It really helps,” said another.

If you feel like your job or other obligations are becoming too much to keep up with, it may be time for a change. Consider switching to a less stressful type of work, moving to a smaller home, or asking for help when you need it. A diagnosis like CLL can mean it’s time to re-evaulate if your current lifestyle is manageable or if you need to take a step back.

For mental health issues like anxiety, connecting with counselors or support groups can help you find strategies to improve your sense of well-being.

4. Ask Your Doctor About Anemia

People with CLL often develop anemia from low red blood cell counts. Anemia can be a cause of fatigue with any form of cancer, but it’s especially common with leukemia and lymphoma. These cancers may cause anemia directly because they affect the bone marrow, where red blood cells are produced.

Fatigue, weakness, and shortness of breath are common symptoms of anemia. Sometimes, anemia is treated with iron supplements. In more severe cases, a blood transfusion can replenish the blood supply. Your health care team can do a blood test for anemia and decide the best course of action.

5. Avoid Infections

In people with CLL, the immune system may not make enough antibodies — proteins that fight infection. This may leave you particularly prone to infections, which can worsen fatigue. Avoid infections by frequently washing your hands, maintaining a healthy diet, and wearing a face mask in crowded places.

6. Take Care of Your Mental Health

Anxiety, stress, and depression due to concerns about cancer can make you feel low and worsen CLL-related fatigue. Reach out for support when you need it, whether through friends and family, an in-person support group, a faith community, or an online social network like MyLeukemiaTeam. You can also talk to your doctor about antidepressant medications or a referral for mental health therapy.

Find Your Team

MyLeukemiaTeam is the social network for people with leukemia and their loved ones. On MyLeukemiaTeam, more than 18,000 members who understand life with leukemia come together to share support, advice, and stories from their daily lives.

How has CLL affected your energy levels and quality of life? Do you think your fatigue is more likely caused by CLL itself, cancer treatment side effects, other factors such as stress or aging, or a combination? Share your thoughts in the comments below or by posting on MyLeukemiaTeam.