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Managing Fatigue and Multiple Myeloma
00:00:10:18 - 00:00:35:06
Dr. Hoffman
I was hoping we could talk about a couple of other symptoms that often accompany multiple myeloma. If we could talk about fatigue, that seems to be very common among our members. Yeah, I often tell my patients that fatigue is the singular most difficult side effect to navigate. And the reason for that is there's so many variables that can feed into fatigue.
00:00:35:08 - 00:00:57:03
Dr. Hoffman
I mean, your readers, your caregivers know this better than most, but when someone’s diagnosed with a cancer, certainly with multiple myeloma, there's a lot of things that go on all at the same time. The illness is at its highest level, before you treat it. We just discussed patients can have pain. Patients can have kidney trouble. Patients,
00:00:57:03 - 00:01:20:01
Dr. Hoffman
and I know we're going to touch on this, will certainly have an extreme amount of anxiety, or even depression. Then, what do you do to a person that's confronted with this life altering, frightening moment where they don't feel physically well, where they're emotionally in turmoil. You start giving them lots of doctor visits. Keep them busy with all sorts of medications, procedures, scans. Bills start to come for co-pays and other things.
00:01:20:06 - 00:01:38:12
Dr. Hoffman
And all of this is thrown at the person at the same time. So how can a person not be fatigued from all of the above? So 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. Let's work on anxiety. Let's work on pain.
00:01:38:16 - 00:02:02:22
Dr. Hoffman
Let's deal with nutrition. And what I tell them is as the myeloma gets better, and as you see it get better and feel better about that, fatigue can improve. And it usually does. Again, the problem is, there's no perfect fix for fatigue. We can have a medicine for pain. We have medicines for myeloma. But the medicines for fatigue are very, very imperfect.
00:02:02:22 - 00:02:19:00
Dr. Hoffman
People will try things like caffeine or other things. So it can be frustrating. People want to have energy, and they want to do the things that they want to do. And again, what I try to encourage my patients is, if we put one foot in front of the other, and we get the big picture of things better, the energy level will follow suit.
“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 a challenging and common symptom in people with multiple myeloma and other blood cancers. 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 that myeloma has relapsed, or returned.
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Persistent fatigue can be discouraging and severely impact energy levels, as some MyMyelomaTeam members have shared. Another member said, “Some days, just getting up to use the bathroom seemed too much.”
To learn more, MyMyelomaTeam spoke with Dr. James Hoffman, an associate professor of clinical 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 — along with some tips to help you feel more like yourself again.
According to Dr. Hoffman, fatigue is the single most challenging physical effect people with multiple myeloma experience. He explained that fatigue isn’t caused by one single factor but by several different 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 distress associated with diagnosis is compounded by doctor’s 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?”
Myeloma or its treatment often cause fatigue, and other factors can worsen it. Here are some of the top causes of fatigue with myeloma.
Anemia is a shortage of red blood cells that carry oxygen throughout the body. Myeloma cells disrupt bone marrow function, which can lead to anemia. This may show up as a low red blood cell count. When the cells and tissues of the body don’t get enough oxygen, you feel fatigued.
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 shortness of breath.
Some people with multiple myeloma have high levels of cytokines. These inflammatory proteins are released by some white blood cells and function as part of the immune system. In healthy people, cytokines help fight infection. However, high levels of cytokines can cause too much inflammation in the body, which can cause fatigue.
The fatigue from cytokine release is similar to what people feel when fighting off a virus. With myeloma, the fatigue lasts much longer.
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. This is nerve damage or inflammation in the hands or feet. Peripheral neuropathy may lead to painful sensations such as prickling, burning, or throbbing.
Fatigue is a very common side effect of cancer therapy, which can include:
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, codeine, and oxycodone.
Talk to your healthcare team about whether your myeloma therapy or symptom management drugs may be causing fatigue.
People who take medications for other health problems may have more fatigue during treatment for multiple myeloma. This may be from the medicines themselves or due to combinations of new treatments and other drugs. Make sure all your oncology team and other healthcare providers are aware of every medication you take for each condition. This includes over-the-counter medications, like sleep aids and antihistamines, as well as nutritional supplements.
Drugs that can cause fatigue as a side effect include:
A multiple myeloma diagnosis comes with many 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 relationships. Fatigue can be caused by the stress, depression, and anxiety that may come with a diagnosis of multiple myeloma or a myeloma relapse. It’s common for insomnia to happen 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 been linked to fatigue. People with myeloma may not get enough nutrients because their body may not be able to absorb them well. They may also experience side effects from treatment such as nausea, diarrhea, or constipation that can make it hard to eat. If you aren’t getting the nutrients and energy you need, it can cause you to feel fatigued.
Fatigue isn’t the same as regular tiredness, and sleep won’t prevent fatigue. But poor sleep can make fatigue worse.
What helps improve your myeloma fatigue often depends on what’s causing it. Researchers have identified several techniques for improving fatigue.
Most people with myeloma experience fatigue at some point in 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 sides of your health is essential while living with a long-term condition like multiple myeloma. If you need help managing emotional distress, ask your doctor about seeing a mental health counselor.
Prioritizing just 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. Also, 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 sometimes say balancing rest with gentle exercise helps manage fatigue, especially when recovering from a bone marrow 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 daily activities. This may help 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) may help curb fatigue.
Your doctor can give you a referral to a physical therapist if you need help choosing exercises that are safe and right for you.
Good sleep habits — also called sleep hygiene — can help in many ways. These practices may protect your heart health, keep your fatigue from getting worse, and improve your quality of life. Many people with cancer have trouble sleeping. Here are some tips for getting a good night’s sleep:
Your cancer 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 myeloma symptom that should be considered in your cancer treatment plan and discussed with your oncologist.
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.”
Taking a slow, steady approach to managing fatigue takes patience. But it’s usually the most effective way to see results. “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, people share their experiences with multiple myeloma, get advice, and find support from others who understand.
How does fatigue affect your daily life? Let others know in the comments below.
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