Why Am I So Exhausted? When Will I Have Energy Again?
FATIGUE IS BY FAR THE most common symptom patients experience while in cancer treatment and something we address with all patients in the palliative care clinic. Cancer fatigue is not like any kind of exhaustion that you’ve experienced before. It might not improve much with rest or a good night’s sleep. In fact, some patients refer to fatigue as an unwanted partner in treatment and complain that this more than anything makes them feel isolated from family and from the life they used to lead. Some fatigue after each treatment is expected; you may not feel able to do more than rest and sleep in the days following an infusion. This is normal and your energy level should rebound day by day.
Someone on your medical team should ask you about your level of fatigue at every visit to the clinic. The National Comprehensive Cancer Network publishes guidelines for oncologists on how to provide the best treatment and for patients on how to get the best care. The NCCN encourages patients to keep an open dialog with doctors about their fatigue at every infusion because it can so deeply affect your quality of life. You might want to keep notes, similar to the notes that you keep on other side effects, so that you can describe your energy level after each treatment and how quickly it rebounds.
Doctors often use a visual analog scale similar to the one for tracking pain. So you will be asked to rate your fatigue on a scale of 0 to 10. Zero means no fatigue at all and 10 indicates the worst fatigue you can ever imagine. Keeping track of how you feel day by day will help your doctors determine whether you are having the episodic fatigue common after an infusion or whether your fatigue is ongoing, which may be caused by other factors, such as medication, sleeplessness, depression, or the cancer itself.
The key is to ask your doctor about any reversible causes and develop strategies to manage your energy effectively. This might involve taking different pain medications, working to get a better night’s sleep, or addressing any anxiety or underlying depression. In this chapter, I will go over the most common causes of cancer-related fatigue and strategies to lessen the effects on your day-to-day life.
Episodic versus Ongoing Fatigue
There are going to be some days during treatment where you expect to be tired. If you know that the first two days after an infusion are the ones when you feel wiped out, the fatigue is more manageable, because you can sort of wait it out.
I’m more concerned about ongoing fatigue in which your energy level seems to lag for weeks. If you have fatigue like this that doesn’t improve for several days or affects your quality of life in a consistent way, then your care team needs to know. If you were my patient, the first question I would ask is what you want to be doing that you can’t do because of the fatigue. Those answers are really revealing. The person who says, “I can’t do anything because I feel that I need to sleep all day” is dealing with a totally different problem than is the patient who says, “I used to get through thirty-six holes of golf, and now I can barely do eighteen.” If you can’t do everything that you used to do, you may be setting expectations too high for yourself while in treatment. By contrast, if you can’t do any of the things that you used to do, then there is likely an underlying medical problem that your doctors should address.
Energy is like a bank account. This is true for everyone, not just cancer patients. You write a check against your energy account whenever you are active throughout the day. You might be doing something pleasant, such as hosting family for a dinner, going shopping, going to the movies, or spending time on your favorite hobby. It could be something less pleasant, such as a stressful meeting or a confrontation, cleaning the house (in my case), or doing anything that’s boring but necessary. We all have those tasks in our lives.
When you are in treatment, the balance in your energy account is going to be lower than usual. So it’s important to remember that everything you do expends precious energy. I urge patients to choose activities wisely and to make note of those times in the day when they usually have the most energy. Save those high-energy times to do the things that are most fulfilling. If you have a to-do list full of little chores that can be taken care of by someone else, now is your chance to delegate them all without guilt.
This may be a difficult adjustment at first. I have patients say to me that they would never dream of asking someone else to wash their car or mow the lawn or fold laundry. “I don’t want to be a burden,” is what they tell me. But if you spend a morning doing one of those things, you might not have energy left to spend time with your grandchildren or have coffee with friends.
Some people tell me that they absolutely love scrubbing the grout in the shower or that they find joy in washing the kitchen floor. I don’t completely understand this, but if you get excited about dusting the house from top to bottom or detailing your car, then go for it.
Maximizing Your Energy
Running low on energy can be especially frustrating if you are the kind of person who likes to be up and around and doing things and talking to people. It will take time to learn how, but there are several ways you can maximize your energy:
Engage in daily exercise. This doesn’t necessarily mean going to a gym or an exercise class. It can be something as simple as a walk every day. Get up and move around so that your muscles have a little bit of strength and stamina.
Get a good night’s sleep. Pay attention to how much you are sleeping and what might be interfering with sleep.
Make plans to do something fun. This is an easy one. Spend time with people who make you feel good, and spend the most time doing things you absolutely love. Anticipating fun activities and people to see will give you extra energy during the day.
Causes of Episodic Fatigue
You already know that fatigue is a primary side effect of cancer treatment. Most patients feel this episodic fatigue in the twenty-four to seventy-two hours after an infusion, but it usually diminishes rapidly after those first few days. If your infusions have been scheduled for every two to three weeks, then you will have a week or two to feel more like your old self, but when the infusions occur weekly it can be kind of a grind. Just when you get your strength back, it’s time to go back for another infusion. It can feel like a sort of Catch-22. The cancer causes fatigue because it disrupts your body’s normal functioning. And the treatment causes fatigue because it is attacking the cancer cells and also disrupting your body’s normal functioning. But when the treatments work well, they will actually relieve the fatigue over time. When the tumors are melting away, your energy level will return.
Causes of Ongoing Fatigue
I always encourage patients to keep track of their energy levels over time. A family member or friend can help you remember and note how long it takes for your energy to rebound after a treatment and help track your sleep patterns and what times during the day you have the most energy. This is all good information for planning your time, but it also helps your medical team to figure out what’s going on if your fatigue suddenly gets more difficult to manage.
Here are some of the issues your medical team will be thinking about or asking you about if you have ongoing fatigue that doesn’t seem to be related to individual treatments.
Have you been on the same course of treatment for several months? Fatigue can accumulate over the course of chemotherapy. If you have had a string of infusions, your energy level may bounce back more slowly over time. A series of radiation treatments can also cause cumulative fatigue that lasts for a couple of weeks after the radiation ends.
Do you have an underlying medical condition? Sudden fatigue can be related to medical conditions other than treatment. This might include low blood counts, which are discussed in chapter 6. The medical term for this is anemia. Your doctor will be following your blood counts closely and will be able to tell right away if this is a problem. If you do have anemia, you might need a blood transfusion.
Fatigue can be a sign of infection, and your doctor will want to rule that out.
Another common medical cause of fatigue is an underactive thyroid gland, also called hypothyroidism. If you already carry this diagnosis, sometimes medications such as iron or calcium supplements can interfere with the absorption of the thyroid replacement medication and make your hypothyroidism worse. There is an easy blood test to check for hypothyroidism so your doctors should rule that out as a treatable cause of severe fatigue.
Rarely, patients can develop adrenal insufficiency if they have been on steroids for a long time. This is true even if you’ve been taking steroids intermittently with chemotherapy or with drugs like dexamethasone to prevent nausea. Your doctor can pick this up on some routine blood tests but may need to do additional tests to measure your adrenal function.
How much pain are you experiencing? Patients with uncontrolled pain are often exhausted. Many of my patients tell me that they want to take fewer pain medications or want to stay at a lower dose of a medication and then find their pain to be more disruptive than they had anticipated. Experiencing pain all day or all night drains a great deal of energy. I often urge patients to manage their pain more aggressively if they are struggling with fatigue. I have a patient named Will who was having nagging pain in his shoulder after a procedure to treat the tumors in his liver. The tricky thing about pain is that sometimes you experience pain in an area that is not the cause of the problem. In Will’s case, he was having what we call “referred pain” in his shoulder from his liver problems. His pain was severe enough to keep him awake at night, and he was miserable and tired all of the time, even though his cancer was responding well to treatment. Will had been reluctant to take any opioids in the past, but then he told me that he and his wife were planning a trip to Paris without the kids. He asked whether there was some way to help him relieve the pain so he could have more energy during his trip. We used a combination of opioids and steroids to reduce his pain, help him sleep, and boost his energy. He and his wife had an amazing time.
What medications are you taking? All kinds of medications can cause fatigue or sedation. Anticholinergic meds such as diphenhydramine (Benadryl) cause you to feel zonked, and you may already know that if the nurses have given this to you as part of your infusion. Patients taking Benadryl during infusions tend to doze off. Gabapentin (Neurontin), which is used to treat neuropathic pain, can also cause sleepiness. Thankfully, this side effect tends to wear off for most people as the body gets used to the medication. So your doctor may suspect that a newly prescribed medication could be causing your fatigue.
Opioids also cause you to feel sleepy. I know I just explained that not controlling your pain aggressively enough can leave you exhausted, and now I have to explain that taking opioids can also drain your energy, particularly during those first few days of taking the medication or the first few days of taking a higher dose. Yet opioids are a mainstay of cancer pain management, so you want to be communicating with your medical team about how well the pills are addressing the pain and how much they are affecting your level of fatigue. With some trial and error, you can find a dose and regimen of pain medication that relieves the discomfort and yet leaves you energetic enough to do the things you enjoy. If you are experiencing a lot of fatigue when you first start taking an opioid, you should know that this won’t last forever. You should feel more energy after two to three days as your body gets used to the medication.
Not all opioids are alike in their effects. Short-acting opioids tend to cause more sedation than long-acting opioids. That makes sense because the medications tend to enter the bloodstream quickly, peak in potency after a couple of hours, and then wear off. That’s why we use short-acting opioids for managing sudden pain, even though you are more likely to feel fatigue as the medication peaks. Long-acting opioids, by contrast, deliver a more consistent level of analgesia and therefore cause less sedation. So your doctor may want to switch you from multiple doses of short-acting opioid to a couple of doses of a long-acting medication if you have chronic pain and struggle with the fatigue that comes with the medication.
But even with long-acting opioids, I try to be mindful of a medicine’s sedative effect when choosing a dosing schedule. For example, long-acting morphine can be dosed every twelve hours or every eight hours. I find that some patients do better with smaller doses divided more frequently. For a patient who requires 120 milligrams of long-acting morphine in a day, I often dose it at 40 milligrams every eight hours rather than 60 milligrams every twelve. Many patients can get more consistent pain control and less sedation with these smaller, more frequent doses.
For patients on larger doses of opioids, cancer fatigue can be treated with methylphenidate (Ritalin). While there is no convincing data that methylphenidate can help with general cancer fatigue, this stimulant can often relieve sedation caused by higher doses of opioids.
Are you eating and drinking enough? Poor hydration and low food intake can contribute to fatigue. What’s tricky with cancer is that people often don’t feel like eating. Some loss of appetite is normal, and yet there can be a lot of friction within families around how much the patient is or is not eating. Instead of contributing to that friction, I tell patients to just do their best. Eat multiple small meals throughout the day. And remember that you get to eat what you want. This is the time to indulge in full-fat dairy products if you want and put butter on your vegetables. A bigger concern is drinking enough fluids. You might want to keep track of how much water you drink throughout the day to make sure you are getting enough. If you become dehydrated during a difficult chemo regimen, you may need IV fluids intermittently to keep you hydrated and energized.
How well are you sleeping at night? Lack of sleep can make fatigue worse. Unfortunately, a lot of patients struggle to get a good night’s sleep. Uncontrolled pain can keep you awake. Certain medications, such as steroids (dexamethasone) used in many chemotherapy regimens, can cause insomnia. And so can anxious thoughts. Many people living with cancer find nighttime particularly difficult. The house is quiet, and there isn’t anything to distract you from worrisome thoughts. All of your concerns can sneak up on you at 3 a.m. if you don’t have any place to talk about these anxieties during the day. You may find that getting to sleep and staying asleep are challenging, and this will lead directly to daytime fatigue.
I always talk to my patients about what doctors call sleep hygiene, which is all of the habits that contribute to a good night’s sleep. They include setting a regular bedtime and preparing for bed by avoiding the television and other screen time late at night. In fact, sleep experts suggest that you use your bed just for sleeping and sex, which may mean removing the television and finding a comfortable chair for nighttime reading. You will want to make sure that the bedroom is quiet, cool, and dark. An air conditioner or fan along with room-darkening shades can help with this.
I also advise patients to avoid naps when they can. On those days when you are wiped out from an infusion or fighting an infection, you can sleep as much as you need to, but on other days I urge people to limit themselves to one 20-minute nap. Set an alarm if you need to. Napping is a big contributor to poor sleep at night. If your body doesn’t get a strong enough impulse that it needs sleep, you’ll lie awake.
Many people ask whether they should be using medication such as zolpidem (Ambien), lorazepam, trazodone, or melatonin to help with sleep. I think this is a reasonable way to treat insomnia. Some people use these medications only on days when they get steroids in pretreatment, knowing that these steroids will keep them up. Other patients use a slightly higher dose of their regular pain medication at night (such as an opioid or gabapentin) because it helps with pain while also promoting sleep. I also sometimes prescribe other kinds of medications that can be sedating in low doses. These include mirtazapine (Remeron), which is an antidepressant, and olanzapine (Zyprexa), which in higher doses can treat thought disorders but works at low doses to treat anxiety and sleeplessness.
Are you waking early in the morning unable to go back to sleep? If sleeping is an issue, you might want to think more closely about emotional issues that can be disturbing your sleep. Early-morning wakening is a common sign of depression, and your clinician might suggest an antidepressant to help you regulate your mood. Some people don’t like the idea of taking an antidepressant, or they think that they take quite enough medications and don’t want any more. But I would encourage you to listen to a doctor who suggests that depression may be part of your clinical picture. We know that treating depression is critical to helping patients do as well as possible with their cancer treatment. Patients who are treated for depression do better than those who show signs of depression but refuse treatment.
How are you managing your anxiety? Uncontrolled anxiety can be exhausting. Patients often come to me saying that their fatigue is worse lately, and when we talk more about what’s going on, they reveal that they have new concerns about the future or about how treatment is going. Sometimes this new anxiety makes sleep elusive, sometimes it keeps you from exercising, and it can really interfere with doing the activities that you love to do, things that will give you energy. I can’t stress enough how important it is to find a safe place to talk about any worries that you have. This is discussed more fully in chapter 17.
If anxiety is keeping you from sleeping, your doctor can prescribe some medications, such as lorazepam, to help you fall asleep. You can also talk to a social worker or psychologist in the cancer center about using relaxation techniques to use when you feel panicked.
Are you exercising regularly? If you are spending large portions of the day in bed or on the couch, your body can become deconditioned, which means that your muscles aren’t as strong. Then when you get up and move around, you feel more tired than usual. It’s easy for people in treatment to get out of the habit of getting exercise, and then they are surprised when a couple of errands leaves them wiped out. There are going to be some days after an infusion when you really can’t get out and exercise, but on those days when you feel a little stronger, you will want to stay active. Aerobic exercises are the most helpful, such as walking or riding a bike. Unless you have a health condition that precludes heart-pumping exercise (such as heart or lung issues) you should try to get about 150 minutes of aerobic exercise per week. You can discuss your exercise regimen with your medical team, but getting more exercise will improve your energy and your quality of life.
For people who have always exercised, this can be an adjustment. One of my patients had been an endurance athlete and exercise fanatic before her diagnosis with metastatic lung cancer at the age of fifty-two. Julie had always loved to go on long runs and spent hours each week at the gym. So, when the tumors that had spread to her brain interfered with her balance and coordination, she stopped exercising, because she was afraid of falling. No more long hikes or eight-mile runs. At first, she felt lost without her exercise routine, but she soon discovered that she could ride a bike just fine and went out on twenty-mile rides every weekend and shorter rides during the week. Julie worked diligently to find that balance between staying safe and getting the exercise she knew her body needed. She did a terrific job of adapting and exercised vigorously throughout her cancer treatment.
Medications for General Fatigue
While several medications work to treat the underlying causes of fatigue, such as pain or sleeplessness, there aren’t a lot of medications that are known to specifically relieve the general fatigue that comes along with cancer and treatment. In some cases, I prescribe stimulants such as methylphenidate (Ritalin) or agents that promote wakefulness such as modafinil. The data is not clear that any of these agents significantly improve fatigue, but when we have exhausted all other strategies, it’s worth a try.
Another of my patients is Henrietta—Hank to her friends—who often comes to appointments with her husband, Tim. She’s in her midfifties and she has colon cancer. She’s a great palliative care patient because she’s so enthusiastic about life. She’s a social worker who is out there fighting for her clients, and when she comes to appointments she’s full of questions about managing her sex life and dealing with the ongoing emotional roller coaster of cancer care and managing the pain so she can work as much as possible. We’ve been working together for about a year and a half now, and she’s recently switched to a new line of chemo. It’s going well, except for the fatigue. As we talked about this, she said that she didn’t have the energy to exercise, and she wasn’t sleeping well because she was now worried about the future. It wasn’t so much that she wanted to be the life of the party all day, but more that she wanted to have some time during the day when she felt energetic and good.
Hank and I addressed all possible causes. We made sure her blood counts were okay and that she wasn’t dehydrated. We got her to exercise about twenty minutes each day, which left her feeling more energized and not depleted. We were sure she wasn’t depressed and she was sleeping well, but mornings were still a bear. She just couldn’t get herself going and felt like she was a zombie much of the first half of the day. In these situations, it is completely reasonable to try out a medication to increase energy.
A stimulant often works best if we suspect that the fatigue is caused by opioids, but I sometimes try this even when patients aren’t on opioids. Methylphenidate is safe for most patients, so talk to your doctor. If you have a cardiac history, he or she may be more cautious in using it, as it can increase heart rate and blood pressure in some patients. Typically I would start with 5 milligrams at 8 a.m. and at noon. Nothing later than 1:00 or 2:00 in the afternoon because taking a stimulant later in the day may interfere with sleep.
Methylphenidate is nice in that it is short acting and lasts about four hours. You don’t have to take it every day. You can have it in your toolbox for those days you want an extra boost to feel more like yourself when you go out to lunch with friends. I always tell patients that this isn’t going to give them enough energy to run a marathon, but it can offer enough of an energy boost to get out into the world again.
Hank ended up trying some sleep aids so that she could get rest when she needed to. I also gave her methylphenidate each morning and noontime, and she increased her exercise. At our next appointment, Hank said to me, “I feel like I have my life back.”
Steroids such as dexamethasone can also increase energy. In fact, some of my patients love being given a steroid as part of their chemotherapy regimen because it gives them so much energy. Steroids are not a great long-term solution because they cause side effects such as ulcers, thinning bones, muscle weakness, and fluid retention. Still, they can be helpful at a low dose given once in a while. I had a patient, Edna, with metastatic lung cancer. She called her dexamethasone her “happy pills” because she was in a much better mood and had increased appetite and much more energy when she took them. In consultation with her oncologist, I gave her a small supply of very low-dose steroid pills that she used for special occasions such as an anniversary dinner or major holiday.