Coping With Insomnia and Fatigue
Published in the Fall 2014 issue of LBBC's national newsletter, Insights on Metastatic Breast Cancer
After she was diagnosed with breast cancer that metastasized to her bones and liver, Kara had to quit her job and lower the intensity of her workouts. As a result of treatment side effects and overall stress of the diagnosis, she oftentimes feels extremely exhausted after performing everyday tasks.
“I don’t have my life as organized as I used to,” Kara says. “It’s so frustrating because a task as simple as putting a load of laundry in the washing machine can be so taxing that I have to immediately lay down afterward.”
Kara’s experience with fatigue is common for people living with metastatic breast cancer. People affected by stage IV disease are likely to experience insomnia and fatigue since they are in or in between courses of treatment. For those with metastatic disease, the issues of insomnia and fatigue may be ongoing.
Understanding Insomnia and Fatigue
Insomnia and fatigue are common among women, even without metastatic breast cancer.
With insomnia, you have trouble falling asleep or wake up in the middle of the night and can’t fall back to sleep, for 3 or more nights per week over a long span of time. Insomnia may make it hard to concentrate on your daily activities, affect your immune system and increase your risk of developing anxiety and depression.
Insomnia can lead to daytime impairments, such as feeling fatigued. Cancer-related fatigue is defined by the National Comprehensive Cancer Network as a “distressing, persistent, subjective sense of physical, emotional, or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with daily functioning.”
This means if you experience fatigue, you might feel tired, weak or exhausted and be unable to function as you normally would, or move much slower than usual.
While exploring the cobblestoned streets of Brussels, Belgium, with her family, Melanie Guthrie, 60, of Atlanta, had to pause for a moment so she could regain her energy, and then carried on. Shortly after, the fatigue overcame her again. “I had a lot of trouble keeping up with the rest of the group—I had to sit down a lot, or take a bus or taxi while my family walked,” recalls Melanie, who was diagnosed with stage IV breast cancer to her lung in 2011. “I just don’t have the energy I used to have.”
In early-stage breast cancer, it can take up to a year for energy levels to return to normal, but your experience with stage IV disease may be different.
“For those with metastatic disease, insomnia or fatigue is more likely to be chronic or sustained,” says Ann Berger, APRN, PhD, AOCNS, FAAN, oncology advanced practice nurse and director of the PhD in nursing program at the University of Nebraska Medical Center. “That doesn’t mean it’s permanent, but it means they will need to speak up to their cancer care team, because these issues are less likely to go away on their own.”
Evelyn Robles-Rodriguez, RN, MSN, APN, AOCN, oncology advanced practice nurse and director of outreach, prevention and survivorship of the MD Anderson Cancer Center at Cooper in New Jersey, says stress can also play a role.
“The mental stress of knowing that you have this diagnosis can be a common cause of insomnia and fatigue early on,” Ms. Robles-Rodriguez says. “You may be wondering what’s going to happen in the future, and that alone may keep you up at night.”
Ms. Robles-Rodriguez says medicines for metastatic breast cancer that may cause insomnia because of their side effects include the common aromatase inhibitors and other targeted treatments. Trastuzumab (Herceptin) and tamoxifen are other medicines that may lead to side effects that can cause you to feel exhausted.
In addition to insomnia, fatigue may also be caused by anemia, a drop in red blood cells produced by your bone marrow. Red blood cells carry oxygen throughout the body, so if your cells aren’t getting enough oxygen, you will likely feel fatigued. Chemotherapy medicines can cause anemia.
Other treatment side effects can also lead to insomnia and fatigue. Pain and discomfort from treatment—such as hot flashes or neuropathy, nerve damage that causes tingling and numbness in your hands and feet—can keep you awake if not managed well. So can anxiety and depression brought on by stress or medicines.
Melanie’s doctor believes her insomnia and fatigue may be from a combination of stress, treatment and the disease itself. Regardless of the cause, both have impacted not just her energy, but her life overall.
“It’s hard to stick to an exercise routine because my sleeping patterns have changed,” Melanie says. “Now I am up at night while most people are sleeping, or sleeping in the morning when most are awake.”
Joan Markman, 56, of Philadelphia, feels her fatigue is a side effect of the different medicines like ixabepilone (Ixempra) and capecitabine (Xeloda) she has taken, as well as the spironolactone (Aldactone) that her doctor recommended to help treat chemotherapy side effects. She didn’t have trouble falling asleep, but she rarely felt fully rested in the morning.
“I’d wake up in the morning, take a shower, then climb back into bed to take a nap before going into work,” Joan says. “Sometimes I’d have to leave work early to go rest. It was very frustrating.”
Treating Insomnia and Fatigue
If you have either insomnia or fatigue for more than a month, consult your healthcare provider, Dr. Berger says. In addition to identifying the cause, your providers can prescribe medicines or refer you to other health specialists who can help with nonmedical treatment options or prescribe medicines.
“We have made a lot of progress within the last 10 years in addressing these issues,” Dr. Berger says. “It’s important to speak up so that we can help you deal with them.”
Exercise is one of many nonmedical approaches to treat insomnia and fatigue. Ms. Robles-Rodriguez says that after ruling out medical causes, providers often suggest exercise first for dealing with these issues, especially fatigue.
“Studies have shown that people involved in an exercise program have an improved quality of life and that fatigue can improve as much as 30 to 35 percent,” Ms. Robles-Rodriguez says.
Joan went to a physical therapist who advised her to improve her exercise routine so it was less strenuous and didn’t cause her to have a crash in energy.
“I began spending less time on cardio machines and using lower resistance for weight machines,” Joan says. “This exercise was more suited to my needs and somewhat helped me avoid crashing after too-vigorous exercise.”
Complementary approaches may also include massage, meditation, a meditation program called mindfulness-based stress reduction (MBSR), and cognitive behavioral therapy, in which a trained healthcare provider helps you think about how you feel, and why you do certain behaviors and how to change them.
“Cognitive behavioral therapy offers education and teaches behaviors to have healthy sleep and understand and manage your fatigue,” Dr. Berger says.
Medicines can also help. Stimulants, medicines that boost energy and focus, can help manage fatigue that other complementary therapies have not relieved. One example is the stimulant methylphenidate (Ritalin). Dr. Berger recommends stimulants be used short-term. Insomnia can be addressed with sedatives, or medicines that cause sleep. A type of sedative called non-benzodiazepines, like zopiclone (Imovane), can improve insomnia with fewer side effects compared to others called benzodiazepines. Side effects of benzodiazepines include dizziness, weakness and unsteadiness as well as depression and headaches.
Kara didn’t like the way she felt when she took medicine to help her with fatigue—it made her feel jittery, so her doctor took her off. She found instead that incorporating yoga into her exercise routine helped her stay grounded and less frustrated about the fatigue while slighting raising her energy levels.
“When I do yoga, I feel like it’s actually giving me a little bit of energy to deal with the fatigue because it’s more about movements,” Kara says. “It’s not the kind of high-energy exercise I’m used to, but it helps.”
Living Your Life While Managing These Side Effects
Fatigue and chemotherapy-related side effects were so bad that Joan had to retire from her high-level job in the Philadelphia mayor’s office. She remained active on the Philadelphia Housing Authority board to stay in public service while keeping mentally active.
“You have to keep mentally in the game—you can’t just nap all day,” Joan says. “I try to do no more than one or two activities per day, whether it’s going to the gym, running errands, or going out to lunch with a friend. When at home I’m frequently asked to take it easy, so I read or do crossword puzzle.”
Staying as active and healthy as possible is important to living your life to the fullest while managing insomnia and fatigue. Pace yourself, prioritize and structure each day, and spend time with the people in your life who give you energy and make you feel better, Dr. Berger says.
“You have to start doing trade offs and remain active, but be aware of avoiding the roller coaster of life,” Dr. Berger advises“It’s important to take one day at a time and focus on getting adequate nutrition, sleep and exercise, and maintain your supportive relationships.”
Melanie knows her limits, and knows when she has to get some rest. “If I feel very wiped out one day, I just plan to not do very much the next day except relax and build up energy.”
Connecting with peers living with metastatic breast cancer through social media has also helped Melanie learn how to cope with insomnia and fatigue.
“We not only gain practical tips from one another, we also get a lot of emotional support,” Melanie says.
Dr. Berger adds that it is important to be mindful of how late you’re on the Web or using technology with LED lights.
“Before our world was high-powered with electricity and technology, we’d go through our day, get to dinner and then try to do things that were relaxing and not demanding of us,” Dr. Berger says. “With pixels and lights from technology, we’re not always turning our body ‘down’ in the 1-2 hours before bedtime.”
Kara’s advice is to have a strong support network and to maintain activities and hobbies. Services like mealTrain.com help your friends and family arrange a schedule to deliver meals.
“You have to do the things you love, even if that means modifying them a bit,” Kara says. “It’s important to enjoy your life at any level of energy you’re at.”
Kara Guzzetti died in October 2014.
Joan Markman died in January 2015.
LBBC is proud to honor their memory and their contribution to this article.