Multiple myeloma can affect your quality of life, interfering with your work, social life, and the tasks of daily living. Many of these ill effects are related to fatigue, a common multiple myeloma symptom. Fatigue from cancer or cancer treatment is sometimes referred to as cancer-related fatigue. Unlike other types of tiredness, cancer-related fatigue cannot be resolved with rest.
“I never realized how exhausting it is to do laundry,” a MyMyelomaTeam member wrote. “I keep having to stop and rest my back.”
“Some days, just getting up to use the bathroom seemed too much,” another member posted.
Persistent fatigue can be extremely discouraging. “Sometimes, this fatigue is a heavy burden that bends me,” one member commented.
To learn more about this issue, MyMyelomaTeam talked with Dr. James Hoffman, assistant professor of clinical medicine at the Sylvester Comprehensive Cancer Center, University of Miami Health System. His focus is on plasma cell diseases, such as multiple myeloma.
In this article, we discuss five common causes of fatigue — including low blood cell counts and treatments for myeloma — and some ways to help you feel more like yourself again.
Dr. Hoffman explained that fatigue is the single most difficult physical effect people with multiple myeloma experience. He explained that fatigue isn’t caused by one factor but by numerous variables, making it complicated to address.
“When someone is diagnosed with cancer — certainly with multiple myeloma — there’s a lot of things that go on all at the same time,” Dr. Hoffman said. “Patients can have pain, patients can have kidney trouble. Patients … will certainly have an extreme amount of anxiety or even depression.”
The physical effects of multiple myeloma and the emotional turmoil associated with diagnosis are compounded by doctor visits, new medications, blood tests, and treatment costs. “All of this is thrown at the person at the same time,” Dr. Hoffman said. “How can a person not be fatigued?”
The International Myeloma Foundation attributes tiredness to the myeloma itself, treatments, and any comorbidities (coexisting conditions). In myeloma, there are three specific causes of fatigue: anemia, cytokines, and pain. Any one of these can result in fatigue, along with decreased appetite, weakness, and weight loss. When people experience all three, the resulting exhaustion can be overwhelming.
Myeloma cells interfere with bone marrow function, which can cause a shortage of erythrocytes (red blood cells). Erythrocytes bring oxygen from the lungs to the rest of the body, and if too little oxygen is being distributed throughout the body, fatigue can result.
About 60 percent to 70 percent of people with multiple myeloma initially present with anemia at the time of diagnosis. Symptoms of anemia include rapid heartbeat, swollen legs, dizziness, headaches, chills, and a decrease in libido (desire for sexual activity).
Some people with multiple myeloma have high levels of cytokines, which can cause fatigue. Cytokines are small proteins that are released by T lymphocytes, a type of white blood cell, in response to an infection or inflammation.
When functioning normally, cytokines protect a person’s body, but when cancer is present, cytokines can actually cause cancer cells to grow and spread to other parts of the body. The resulting fatigue from cytokine release is similar to that which people feel when fighting off a virus. With myeloma, the fatigue is more persistent and lasts much longer.
Many people with multiple myeloma have bone pain or pain related to their medications, such as lenalidomide (Revlimid). Pain may also be related to peripheral neuropathy, which affects the nerves of the feet and hands. Peripheral neuropathy can be directly related to multiple myeloma, or it can be a side effect of treatments such as bortezomib (Velcade). Pain can cause fatigue — and fatigue can also be a side effect of some pain relief medicines.
Fatigue is a very common side effect of cancer treatments. These treatments include:
Chemotherapy kills both healthy cells and cancer cells, causing the body to expend extra energy to repair the healthy ones. Chemotherapy side effects, such as insomnia, mood changes, muscle wasting, nausea, and vomiting, may also contribute to fatigue.
Corticosteroids included in many multiple myeloma treatment regimens, such as dexamethasone, can also cause fatigue. Initially, people treated with steroids feel newly energetic and can even experience sleeplessness. However, this tends to be followed by a “crash,” and the resulting fatigue may persist for several days.
Radiation therapy is also known to cause fatigue, which can worsen over time. According to the International Myeloma Foundation, as many as 80 percent of people undergoing radiation therapy experience fatigue throughout their treatment, and up to 30 percent report it at their follow-up visits with doctors. Generally, fatigue lasts up to four weeks after treatment, but it sometimes persists for as long as three months. Radiation can also affect the thyroid gland, causing hypothyroidism, which slows metabolism.
People already taking drugs for other medical reasons may experience fatigue when being treated for multiple myeloma. This may be due to the medicines themselves or to the combination of the old drugs with the new. It’s very important to make sure all your health care providers are aware of every medication you take for every condition. This includes over-the-counter medications, like sleep aids and antihistamines, and nutritional supplements.
Drugs that can affect fatigue include:
Although fatigue can be caused by antidepressants, it can also be caused by the depression, anxiety, and stress that often come with a diagnosis of multiple myeloma. Poor nutrition has also been implicated, as have dehydration and reduced physical activity.
There are several practices you can embrace to manage your fatigue.
Half of people living with myeloma experience fatigue, and that proportion rises to nearly 100 percent in people receiving advanced treatment. MyMyelomaTeam members encourage one another to have compassion for themselves during these times. “Take it easy and don’t overdo it. Your body is telling you to relax!” one member said. Another member agreed, “I would do too much and then pay for it for a couple of days.”
Fatigue and mood are closely intertwined. Research shows that those experiencing mental health problems while living with myeloma have a greater chance of experiencing fatigue. Taking care of all facets of your health is essential while living with a chronic condition like multiple myeloma.
Prioritizing one or two activities each day is another strategy for managing fatigue. One member wrote, “I’m still very fatigued, but I managed to get dressed for Sunday service.”
“Do things you love doing,” another MyMyelomaTeam member suggested. “It worked for me to overcome my fatigue.”
Members recommend balancing rest with gentle exercise to build endurance and manage fatigue, especially when recovering from a stem cell transplant. “It’s very tempting to lie around or sit in the recliner,” a member wrote. “I try to walk twice daily with a nap in between.”
Health care providers recommend getting regular, light exercise and keeping up with routine daily activities to combat the fatigue and stress that may come with a multiple myeloma diagnosis. One study suggested that low- to moderate-intensity exercise that activates your muscles (resistance training) or gets your heart beating faster (aerobic training) is beneficial in reducing fatigue.
Your health care team can help you find strategies to manage your fatigue. Some members have found that simple changes, like taking medication at night rather than in the morning, can help reduce drowsiness. Other members experienced more energy after being treated for anemia. Fatigue is a symptom that should be considered in your treatment plan.
There’s no single solution that works for everyone with fatigue, Dr. Hoffman explained. “What I say to patients when they’re confronted with fatigue is, ‘Let’s fix problems that we can focus on and fix.’ Let’s get the myeloma better,” he said. “Let’s work on anxiety, let’s work on pain, let’s deal with nutrition.”
A slow, methodical approach to managing the fatigue may not be what people with multiple myeloma are hoping for, but it’s generally the most effective strategy. “As the myeloma gets better, and as you see it get better and feel better about that, fatigue can improve,” Dr. Hoffman said. “And it usually does.”
By joining MyMyelomaTeam, the social network and online community for those living with multiple myeloma, you gain a support group more than 17,000 members strong. Fatigue is one of the most discussed topics.
How does fatigue affect your daily life? Has your oncologist found the right treatment options to manage your fatigue? What helps you successfully get through each day? Share your tips and experiences in a comment below or on your Activities page.