“I never realized how exhausting it is to do laundry,” a MyMyelomaTeam member wrote. “I keep having to stop and rest my back.”
Fatigue is one of the most common and challenging symptoms in people with blood cancers such as multiple myeloma. It can interfere with work, social activities, and daily tasks. Unlike ordinary tiredness, cancer-related fatigue doesn’t go away with rest and can be overwhelming. Sometimes, extreme fatigue is a sign of cancer.
Persistent fatigue can be discouraging and severely impact energy levels, as some MyMyelomaTeam members have shared. “Sometimes, this fatigue is a heavy burden that bends me,” one member commented.
“Some days, just getting up to use the bathroom seemed too much,” another member posted.
To learn more, MyMyelomaTeam spoke with Dr. James Hoffman, an associate professor of medicine at the University of Miami Health System’s Sylvester Comprehensive Cancer Center. He specializes in plasma cell disorders, including multiple myeloma.
Here are seven common causes of fatigue — including low blood cell counts and treatments for myeloma — and some tips to help you feel more like yourself again.
According to Dr. Hoffman, fatigue is the single most difficult physical effect people with multiple myeloma experience. He explained that fatigue isn’t caused by one single 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, they 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 (other medical conditions). In myeloma, there are three main causes of fatigue: anemia, cytokines (proteins in the immune system), and pain. Any one of these can result in fatigue, along with decreased appetite, weakness, and weight loss. When people experience any of these, the resulting exhaustion can be overwhelming. Myeloma often causes fatigue, but other factors can worsen it.
Myeloma cells interfere with bone marrow function, which can lead to anemia — a shortage of erythrocytes (red blood cells) that carry oxygen throughout the body. When the body doesn’t get enough oxygen, fatigue can occur.
About 60 percent to 70 percent of people with multiple myeloma have 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 are proteins that are released by a type of white blood cell in the immune system. Cytokines help fight infection. High levels of cytokines can cause too much inflammation in the body and can be a source of fatigue. The 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.
When functioning normally, cytokines protect the body, but when someone has cancer, cytokines can cause cancer cells to grow and spread to other parts of the body. Cytokines can also cause bone damage in people with myeloma.
Pain can also cause fatigue. Many people with multiple myeloma experience bone pain or pain related to their medications. Some myeloma treatments can lead to peripheral neuropathy — nerve damage or inflammation in the hands or feet — causing painful sensations such as prickling, burning, or throbbing.
Drugs called immunomodulatory suppressants, such as thalidomide, may cause peripheral neuropathy as a side effect. Other similar drugs such as lenalidomide (Revlimid) have a much lower risk of peripheral neuropathy. Proteasome inhibitors, such as bortezomib (Velcade) and ixazomib (Ninlaro) can also cause peripheral neuropathy that affects skin, cartilage, and muscles.
Fatigue is a very common side effect of treatments for cancer. These treatments include stem cell transplant, 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, making the body use extra energy to repair the healthy ones. Side effects from chemotherapy, 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, long-term use of steroids can lead to fatigue and muscle weakness.
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. Fatigue usually lasts up to four weeks after treatment, but it sometimes continues for as long as three months. Radiation can also affect the thyroid gland, causing hypothyroidism, which slows metabolism.
Fatigue can also be a side effect of opioids, which are sometimes prescribed for pain relief in people with myeloma. Opioids include drugs such as tramadol (Ultram), codeine, and oxycodone (Percocet).
People taking drugs for other medical reasons may experience fatigue when being treated for multiple myeloma. This may be from the medicines themselves or due to combinations of new treatments and other drugs. Make sure all your healthcare providers and oncology team 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 cause fatigue as a side effect include:
A multiple myeloma diagnosis comes with many different sources of stress. In addition to worrying about your health, you may be worried about how your diagnosis will affect your finances, work performance, and family or other relationships. Fatigue can be caused by the stress, depression, and anxiety that often come with a diagnosis of multiple myeloma. It’s common for insomnia to occur along with these feelings.
With a diagnosis like this, it’s important to lean on your support system. This may be your family, friends, community, or a local or online support group. It can also be helpful to seek the help of a mental health professional.
Poor nutrition, dehydration, and reduced physical activity have all been linked to fatigue People with multiple myeloma may not be getting enough of the nutrients they need because their body may not be able to absorb them well. They may also experience side effects from treatment like nausea, diarrhea, or constipation that can make it difficult to eat. If you aren’t getting the nutrients and energy you need, it makes sense that you would feel fatigued.
Although fatigue isn’t the same as regular tiredness and sleep won’t prevent fatigue, poor sleep can make fatigue worse.
Myeloma fatigue can have several different causes. Researchers have identified several techniques for helping restore energy.
Most people with myeloma experience fatigue at some point in the course of their disease or treatment. MyMyelomaTeam members often 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.”
Fatigue and mood are closely intertwined. Research shows that mental health problems, such as anxiety and depression, can make fatigue worse. Taking care of all facets of your health is essential while living with a long-term condition like multiple myeloma. If you need help managing emotional distress, you can ask your doctor about seeing a mental health counselor.
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.”
Whenever possible, do activities and chores at times when you know you’ll have more energy, and ask friends and family for help if you need it.
“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.”
Healthcare 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 in the journal Cancer Nursing 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 doctor can give you a referral to a physical therapist if you need help with exercise that’s appropriate for you. You can also get a referral to a registered dietitian to help you plan a healthy diet. Lifestyle changes can help with fatigue and your overall well-being.
Good sleep habits — also known as sleep hygiene — can help protect your heart health, keep your fatigue from worsening, and improve your quality of life. People may ask if you sleep a lot with myeloma, but many people with cancer have trouble sleeping. Some tips for getting a good night’s sleep include:
Your healthcare 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 and discussed with your doctor.
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 fatigue takes patience, 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.”
On MyMyelomaTeam, the social network for people with myeloma and their loved ones, more than 28,000 members come together to ask questions, give advice, and share their stories with others who understand life with myeloma.
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.
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