Fatigue is a common symptom in people with multiple myeloma. Fatigue from cancer or cancer treatment is sometimes referred to as cancer-related fatigue. Unlike other tiredness, cancer-related fatigue cannot be resolved with rest.
Fatigue can result from anemia, which is a low red blood cell count, or it can be a side effect of treatments like chemotherapy or stem cell transplant. In addition to causing fatigue, multiple myeloma can interfere with quality of life, work, social life, and the tasks of daily living.
“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. His focus is on plasma cell diseases, such as multiple myeloma.
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 the costs of cancer treatment. “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, the treatments, and any comorbidities a person may have.
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 red blood cells, or erythrocytes. Red blood cells bring oxygen from the lungs to the rest of the body, and if the amount of oxygen being distributed throughout the body is not enough, fatigue can result.
Approximately 60 percent to 70 percent of people with multiple myeloma initially present with anemia at the time of diagnosis. The signs of anemia may include rapid heartbeat, swelling of the legs, dizziness, headaches, chills, and a decrease in libido.
Some people with multiple myeloma have high levels of cytokines, which can cause fatigue. Cytokines 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, it is more persistent and lasts much longer.
Many people with multiple myeloma have bone pain or pain related to medicines they may be taking, such as Revlimid (Lenalidomide). 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 Velcade (Bortezomib). Pain can create fatigue. 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 stem cell transplants, chemotherapy, high-dose therapy with stem cell rescue, immunomodulatory drugs, immunotherapy, monoclonal antibodies, proteasome inhibitors, radiation therapy, and surgery.
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.
Steroids 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 fatigue from that may persist for several days.
Radiation therapy is also known to cause fatigue, which can worsen over time. As many as 80 percent of people undergoing radiation therapy expereince fatigue throughout their treatment, while up to 30 percent report it at their follow-up visits with doctors. Generally, fatigue lasts up to four weeks after treatment, but it can sometimes persist 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 is very important to make sure all of 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.
While fatigue can be caused by antidepressants, it can also be caused by the depression, anxiety, and stress that often comes with a diagnosis of multiple myeloma. Poor nutrition has also been implicated, as has dehydration and reduced physical activity.
Health care providers recommend regular, light exercise and keeping up with regular daily activities to combat the fatigue and stress that may come with a multiple myeloma diagnosis.
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.”
While a slow, methodical approach to managing the fatigue may not be what people with multiple myeloma are hoping for, 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.”
MyMyelomaTeam members encourage each other 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.”
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.”
Your health care team can help you find strategies to manage your fatigue. Some members have found simple changes, like taking medication at night rather than in the morning, can help reduce drowsiness. Other members have experienced more energy after being treated for anemia.
By joining MyMyelomaTeam, the social network and online community for those living with multiple myeloma, you gain a support group more than 7,700 members strong. Fatigue is one of the most discussed topics.
Here are some question-and-answer threads on MyMSTeam about fatigue:
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 MyMyelomaTeam.