Fatigue is a common symptom of myeloproliferative neoplasms (MPNs), occurring in 81 percent to 95 percent of people living with these chronic blood cancers. Fatigue caused by MPNs can significantly impair quality of life for people living with MPNs.

The three main types of MPNs are essential thrombocythemia (ET), polycythemia vera (PV), and primary myelofibrosis (MF or PMF). Each type of MPN involves the abnormal growth of blood stem cells in the bone marrow, leading to an overproduction of platelets, red blood cells, or white blood cells. Common MPN symptoms include blurred vision, bone pain, headaches, night sweats, and fatigue.

"I woke up tired and fatigued," a myMPNteam member wrote. "It took almost seven days to feel a little better."

“I had a really rough weekend,” another member posted. “A lot of fatigue. Felt like sleeping the whole time.”

To learn more about fatigue and MPNs, myMPNteam talked with Dr. Gabriela Hobbs, a leukemia specialist at Massachusetts General Hospital. Dr. Hobbs’ clinical interests include the treatment of myelodysplastic syndromes and myeloproliferative neoplasms.

Causes of Fatigue in MPNs

Fatigue in people with MPNs varies depending on the type of MPN they have. While those with ET or PV have to contend with their share of exhaustion, fatigue is believed to be the most acute in people with MF.

However, Dr. Hobbs said that all types of MPNs can cause fatigue. “The most common side effect in people with MPNs is fatigue,” she said.

Several factors contribute to fatigue in MPNs. These include medicines used in MPN treatment, comorbidities such as depression, demographic characteristics, and health conditions associated with MPNs. Low levels of hemoglobin in the blood, otherwise known as anemia, may contribute to fatigue in MPNs.

Demographic Factors

Demographic factors have also been implicated in fatigue for people with MPNs. Studies have shown more women with MPNs experience fatigue than men. Higher body mass index (BMI), lower educational level, and younger age have also been found to be risk factors for experiencing fatigue with MPNs.

Side Effects of Treatments

Some medications used to treat MPNs may also contribute to fatigue in some cases. These include antianxiety medications, antidepressants, antihistamines, antihypertensives, cough or cold medicines, prescription pain medications, and steroids.

Dr. Hobbs said it’s essential for people to advocate for themselves when a medicine is prescribed that causes fatigue. “Some medications can increase fatigue,” she said. “Talk to the primary care doctor and say, ‘You know, this blood pressure medicine can cause fatigue. Is there another medicine I can take?’”

Other Possible Factors

People who have had certain other health conditions have been found to have higher levels of fatigue related to MPNs. In a survey of people with MPNs, those with previous histories of anemia, hemorrhage (abnormal bleeding), or thrombosis (abnormal clotting) reported moderate to severe fatigue. The use of alcohol and tobacco was also a factor, as were depression and anxiety.

“Living with an MPN or living with fatigue can also lead to symptoms of depression and anxiety,” Dr. Hobbs said. “It may be appropriate for some patients to think about medications to help with the symptoms of depression and anxiety, whether or not the depression was present beforehand, or as a result of [the MPN].”

Ways To Manage Fatigue in MPNs

While such factors as age and blood counts come into play, the fatigue associated with MPNs has never been conclusively linked to these rare blood cancers. Dr. Hobbs said that, while some medicines have been helpful, fatigue is a challenge to treat overall — despite the fact that it's one of the most common symptoms of MPNs.

“Fatigue is a difficult symptom, honestly,” she said. “Sometimes, medications really don't help it that much.”

In the absence of a cure, people with MPNs still have options when it comes to addressing their fatigue, such as weight loss. There are also other options which require minimal changes in the way one lives.

Lifestyle Changes

Increasing physical activity by starting an exercise regimen could have very positive effects on people with MPN-related fatigue. “A routine with exercise can help patients feel less fatigued,” Dr. Hobbs said, adding that getting into a healthy routine with sleep also has benefits. “Having good sleep hygiene — like going to sleep at the same time every day and waking up at the same time every day — is important to making sure that you know you're getting a good night's rest to feel better during the day.”

Dr. Hobbs believes sleep hygiene is an integral part of a broader strategy. If someone doesn't respond to medication, it's essential to focus on what can be addressed and what people control, such as when they go to bed.

“There may be some things that we just don't have enough control over,” she said. “But the things that we do have control over, it's really important to maximize those.”

Treatment Options

Dr. Hobbs said that no single medicine effectively treats fatigue in patients with MPNs 100 percent of the time. However, she noted that some people taking Jakafi (Ruxolitinib) have had good outcomes. “Sometimes we're lucky, and Jakafi really helps,” she said.

Members of myMPNteam also talk to each other about treatments. “[I’m] trying to get insurance or on the manufacturer program for Ruxolitinib,” one member said. Some members have found that Jakafi significantly reduced their tiredness.

While there may not be many medicines to address fatigue in people with MPNs, people can do things on their own to help. According to MPN Voice, taking the following steps can help manage fatigue:

• Plan the day so that it includes dedicated time for rest.
• Eat a healthy diet and keep a record of what was eaten.
• Stay hydrated.
• Reduce stress.

It's also vital that people with MPNs understand when they're overextending themselves. Changing diet and exercising may be helpful, but that may not be possible for everyone — particularly when the fatigue is overwhelming. At those times, people should avoid feeling guilty about their energy levels, and ask their friends and family to help them manage things that give them difficulty.

Members of myMPNteam talk about their good days when the fatigue is at bay, and energy levels are higher. “[I] have some energy back,” shared another myMPNteam member.

Another myMPNteam member said she doesn’t let MPN-related fatigue stop her from participating in life’s small pleasures. “I work hard at not letting [it] interfere with my life,” she said. “I do my own yardwork.”

Talking To Health Care Providers

Managing fatigue with MPNs is an ongoing process, and it’s not a simple one. As such, people with MPNs should try to develop a close working relationship with health care professionals, to keep tabs on the condition as time goes on. They should also be open to the possibility of bringing in other medical specialists, if that’s what their doctor recommends.

“I think patient engagement in their own care may be really important,” Dr. Hobbs said. “It's really important to have a good relationship with your primary myeloproliferative neoplasms doctor, but you may also need to involve other types of providers.”

Your health care team can help you find strategies to manage your MPN-related fatigue.

You Are Not Alone With Myeloproliferative Neoplasms

By joining myMPNteam, the social network and online community for those living with myeloproliferative neoplasms, you gain a support group of people who know what it’s like living with these rare blood cancers. Fatigue is one of the most discussed topics.

Here are some discussions on myMPNteam about fatigue:

• “I was just diagnosed with polycythemia vera last month. … Fatigue, dizziness, insomnia, headaches, and some itching are beginning.”
• “It is hard to get motivated when I am always tired."
• “I am sick of the tiredness and people not understanding."

How does fatigue affect your daily life? Has your hematologist found the right treatment options to manage your fatigue? Are you concerned about your overall well-being? Share your tips and experiences in a comment below or on myMPNteam.