Ask-the-Expert Online Conference: Ease Fatigue, Boost Energy

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Ask-the-Expert Online Conference

The Ask-the-Expert Online Conference called Ease Fatigue, Boost Energy featured Lillian Nail, Ph.D., R.N., Russel Portenoy, M.D., and Marisa Weiss, M.D. answering your questions about ways to manage fatigue and increase energy levels.

Editor's Note: This conference took place in March 2001.

Patients' usual experience with fatigue?

Question from Carey: Dr. Nail and Dr. Portenoy, what do you hear from your patients about fatigue?
Answers - Lillian Nail We hear that people are concerned when no one tells them that fatigue is an expected side effect of treatment and they want to know when the fatigue will end and why it's happening.
Russell Portenoy And we hear that fatigue is a major impediment to having a normal level of function even after treatment is over, and that fatigue is often associated with mood disturbance and problems in the family.
Marisa Weiss, M.D. Sometimes it's confusing because you might not know what is causing the fatigue. Is it the cancer itself or is it the treatment for the cancer? You have to work with your doctor and nurse to help sort this one out.

How to keep strength up after BMT?

Question from Bb2: In December I underwent a bone marrow transplant, I feel better than I have in years, however I am worried this effect is only temporary. Any suggestions as to how I can keep my strength up?
Answers - Russell Portenoy There are many causes for fatigue and it is important to try to assess and understand factors that may be contributing to it. Some people experience fatigue because of the disease or the treatment itself. Other people experience fatigue because of medications they may be taking, because they have a sleep disturbance, because they have some other medical problem, because they have a depression, or because they have been inactive for so long that they have become de-conditioned. It is important to realize that fatigue could have all of these influences and to try to minimize or reverse all of the possible contributing causes, this may entail making sure that nutrition is good, that there is some effort to exercise or at least remain active, that problems with moods are addressed, and that a sleep disturbance is treated. It is important to work with a physician or nurse to address each of these factors in an effort to minimize the fatigue.
Lillian Nail Eat well. Sleep well. Get enough physical activity. And be good to yourself.
Marisa Weiss, M.D. You have to give yourself credit for all of the ground that you have just covered. And for women who have had bone marrow transplants, usually the seriousness of their diagnosis needs to be balanced against reassurance that they can move past it by their team of caretakers.
Question from CallaF: How would I know if this is normal cancer-related fatigue, or if I'm anemic?
Answers - Russell Portenoy To the person experiencing it, the fatigue that accompanies anemia or the fatigue that is from other causes can feel the same. So that the person who experiences fatigue would be unable to know for sure whether it is an anemia or some other problems. This is why it is important to have an adequate assessment, if the fatigue is significant. In addition to the kinds of evaluations that we mentioned before, measurement of the hemoglobin is extremely important. There is now evidence that makes us believe that even relatively mild anemia can be associated with fatigue in some women. And it may be worthwhile to have a relatively mild anemia treated in an effort to determine whether the fatigue lifts.

Tired from chemo or lack of ERT?

Question from Carol: How can one tell the difference between being tired from chemotherapy or from the lack of estrogen replacement therapy?
Answers - Lillian Nail There's not a good way to tell that right now because we have very few studies that have looked at hormone levels and the experience of fatigue. The most common thing that we hear from women is that they are experiencing sleep disruption. The big cause for that is hot flashes. And that would give you a high index of suspicion that this might be a hormone related problem working through the sleep mechanism.
Marisa Weiss, M.D. Any time that you abruptly change the medication that you are taking, your body goes through a change that can influence how you feel including your energy level; and depending on what kind of medications you are taking, or you just stop taking, the effect can be small or substantial.

Limited after stem cell transplant?

Question from Chat: After having a stem cell transplant in September 1999 I still am very fatigued. Everything is an effort. What can I do to help my limitations?
Answers - Russell Portenoy The question points out that some women can develop very prolonged fatigue after treatment ends. This phenomenon is not well recognized by the medical community, but certainly occurs. The management is as we've said before. A person should undergo a good evaluation, including measurement of hemoglobin and other chemicals in the blood. Assessment of nutrition, sleep, mood, and general conditioning And based on this information, try to develop a strategy to minimize the factors that may be contributing to fatigue. If reversal of the contributing causes does not help a person with a serious degree of fatigue some physicians are now using strategies like drug therapy. Drugs such as the psycho stimulants and a few others can be tried in selected patients to try to reverse fatigue. The stimulants include drugs like methylphenidate or Ritalin, or dextroamphetamine or Dexadrine, or Modafinal or Provigil.
Marisa Weiss, M.D. How do you determine who can benefit from these medications?
Russell Portenoy At this point we don't know who is going to respond well and who is going to develop side effects. We don't know much about which drug is better, what's the best dose, how long the benefit will last. But there is enough experience to suspect that the person who is fatigued and who has no medical contra versant to the use of a stimulant, might benefit from a trial.
Lillian Nail Would it be fair to say that this is a research topic that was just gaining in popularity?
Russell Portenoy This is an area that certainly needs more clinical investigation. Although some doctors are trying to use these medications based on good clinical judgment and their experience, we really have very little evidence of ethicality and safety.
Marisa Weiss, M.D. What about caffeine--the good old cup of coffee? Does it help at all?
Russell Portenoy Caffeine is another stimulant that some people do use. Physicians rarely prescribe something that you can buy in the supermarket, but there is no reason to believe that caffeine cannot be as effectively used as any of the other psycho stimulants.
Lillian Nail We don't have much information about long-term fatigue right now and the work on the psycho stimulants really reflects an interest in looking at the problem rather than a full answer to the question.
Question from Amanda: Some experts suggest that natural food eating is the best way to go when recovering from breast cancer—avoiding additives and processing. Can I have your thoughts on this for raising energy levels?
Answers - Lillian Nail People are always interested in approaches using foods and supplements; however, there are no studies of specific dietary manipulations or use of supplements that have included measures of fatigue, so basically nobody knows if these things help or not.
Marisa Weiss, M.D. But for a particular individual…
Lillian Nail People may find things that are helpful to them, for example, like caffeine, but when we ask people, we haven't found a particular pattern in that. There is a big variation.

Importance of exercise after recovery?

Question from Amanda: How important is exercising to increase energy levels after recovery, especially when your feeling so depleted?
Answers - Lillian Nail The studies of exercise as a way to manage fatigue in cancer patients have mostly been done with women with breast cancer during treatment. My personal experience with exercise following treatment for breast cancer and for non-Hodgkin's lymphoma was very helpful.
Marisa Weiss, M.D. What kind of exercise was helpful to you?
Lillian Nail Cardiovascular conditioning, riding a bike, treadmill and weight training.

Why fatigued when no therapy?

Question from Tlh: Why am I so tired when I did not need chemo or radiation therapy, only a mastectomy? Is it from stress?
Answers - Russell Portenoy It's been appreciated for a long time that there can be a fatigue syndrome that follows surgery, even in minor procedures. It is also clear that stress, which can interfere with sleep or nutrition or become associated with depressed mood, can also be involved in causing or sustaining fatigue. Finally, there can sometimes be problems like anemia that can occur in the perioperative period, or an association with the underlying disease that might be a cause. Again, the need to do an evaluation based on what we now know about fatigue is very important. And patients should not be afraid to discuss this with their doctors, many of whom don't appreciate the need to do this evaluation.
Marisa Weiss, M.D. Regardless of your treatment, the fear and uncertainty of a cancer diagnosis is enough to steal a lot of your energy away over a period of days to weeks, if not longer.

Which doctor best evaluates fatigue?

Question from LGarr: What kind of doctor is the best kind to evaluate fatigue?
Answers - Russell Portenoy The question can be asked, what type of physician is the best to evaluate fatigue and the answer is unfortunately that there is no fatigue specialist at this time and the best doctor is one who appreciates the problem, is willing to listen to a patient's complaints carefully, who knows enough about the problem to do an evaluation, and is willing to treat the problem as part of cancer care. Patients should expect their oncologists to have this interest and skill but of course, some do not. Patients should not be concerned about telling their doctor that this problem needs to be addressed more aggressively and they should not be concerned about seeking other opinions from other internists or even other oncologists as a way of trying to obtain better care for this problem.
Lillian Nail We always suggest to people that they say things like "I'm so tired," and give an example, like after chemotherapy. Or "I get short of breath when I walk the 5 stairs to my office." So you give people specific information about the situation.
Marisa Weiss, M.D. It is also important to point out how different this is before the whole situation started—that the fatigue represents a significant change in your life.

Increase energy so no nap needed?

Question from BC survivor: I have had multiple rounds of chemo, but none since October 1998. I have never regained the energy I had before I started chemo. Are there any ways to help combat the fatigue? I know I will never get back to where I was but would like enough energy to go through a day and not want to take a nap.
Answers - Russell Portenoy Much of this question was addressed in previous answers. I would only add that patients with very severe fatigue for a prolonged period of time, who don't have an obvious treatable cause, like a depression or sleep disturbance or poor nutrition, and who don't respond well to stimulant drugs or to exercise might yet have other options. There are other non-pharmacological techniques that some people find helpful. For example, by working with a psychologist some patients find cognitive approaches that allow them to function better and to maintain some control over the fatigue. There are also other drugs that are rarely tried if psycho stimulants are not effective or are contraindicated. Some doctors try using specific anti-depressant medications that are more activating, even if patients are not feeling depressed.
Marisa Weiss, M.D. Can you give examples of the cognitive approaches?
Russell Portenoy A cognitive approach might be, for example, pacing, or the use of diaries or calendars to help ensure that activities are performed at certain times of the day when energy level is relatively high. The goal of a cognitive approach is to allow a patient to function as best as they possibly can and avoid the frustration and disturbances of life functioning that occur if fatigue is persistent.
Lillian Nail In terms of the pacing or energy conservation approach there is very little literature on this now. There is a study underway trying this with patients undergoing treatment but we don't have the results yet. It's an area of interest but rarely tested. One of the key issues is identifying the pattern of your fatigue and scheduling your activities to match the pattern.

Radiation effects 6 months after?

Question from Mary: I am 6 months post wide excision and radiation. Sometimes I am so exhausted. Am I still feeling radiation effects?
Answers - Marisa Weiss, M.D. There are no residual radiation in you, that is, you were never radioactive, most likely; but the draining effect of the daily radiation treatment over weeks, that comes on top of the scare of the diagnosis, the surgery, and some people, chemotherapy and hormonal therapy--all together--combine to take your energy away. It can take a long time to recover from these accumulative effects. Also, I find that just the disruption of your every day routine to make room for these treatments can really throw off the rhythm in your life. You may find yourself no longer exercising properly or eating well or doing the things that you enjoy doing. Many of these things may have been what gave you a flow of energy when things felt more normal.
Lillian Nail It is not unusual for women in our studies to tell us that they still feel more tired than they think they should 6 to 8 months out of radiation therapy. That tends to get better over time but a lot of women still tell us they still feel some fatigue up to a year out of treatment.
Russell Portenoy These syndromes of prolonged fatigue after treatment—including radiation therapy, surgery, and chemotherapy—are not well recognized by many physicians. If a physician tends to ignore the complaints or simply offers reassurance that everything is fine when the fatigue is severe enough to interfere with function, a patient should not be concerned about insisting on the kind of evaluation that we spoke about before or the possibility of seeking another opinion from a physician who would take the complaint more seriously.
Marisa Weiss, M.D. Don't worry about "complaining" when you are describing fatigue to your health care taker although it can sometimes feel like that, but as Dr. Portenoy said, the only way they will know that you are feeling so fatigued is if you tell them.

Does exercise help fatigue?

Question from Allison: The side effects I've had since my treatment have left me so worn out. I do sometimes feel better if I make myself do a 10-minute walk. Does exercise help or is it my imagination that I feel a little better?
Answers - Lillian Nail Yes, exercise does help. And people with cancer often talk about how they feel energized after they have exercised. We don't know why exercise helps. We don't know much about the causes of fatigue, as Dr. Portenoy pointed out earlier, but people are starting studies now to look at that and get some answers to help us prevent it or treat it.
Russell Portenoy A decision to exercise can sometimes be difficult because many people will have a tendency to overdo it and to feel more fatigued initially. The best approach is to start with a limited amount of exercise, an amount that is below the threshold of making a person feel exhausted, and to do that amount of exercise on a regular basis as often as daily. Slowly, that amount of exercise should be increased if a person can tolerate it. Unfortunately, there are not enough studies for us to really know how to institute an exercise program in a way that would optimize the chance for success. And we tend to suggest that people take the approach of starting slowly and building it up, but committing to some type of exercise on a regular basis.
Lillian Nail We like to suggest that people get a professionally prepared exercise prescription from physical therapy or exercise physiology that is based on evaluating their condition and their limitations, because there are ways exercise can be adapted. For example, for people who have a hard time walking, or the types of exercises that people can do based on their initial testing.
Russell Portenoy I agree with Dr. Nail.
Lillian Nail Most of the studies have used walking as the primary exercise that is used.

Options for less-strenuous exercises?

Question from Allison: What are some types of exercises I can do that are not too strenuous? I'm a 45-year-old breast cancer survivor!
Answers - Lillian Nail With small amounts of exercise, she shouldn't be concerned about starting with truly minimal levels of activity. We might encourage a patient, for example, to walk for just 2 minutes, twice a day, as an initial starting point in the setting of severe fatigue. After a week, this could be increased to 4 or 5 minutes, if possible. Again, getting professional help is probably the best but we recognize that many people don't have access to this help or perhaps can't afford it. In this situation, get the advice of your physician and begin to exercise, if possible, even at very minimal levels.
Marisa Weiss, M.D. It may very well be that your insurance policy will cover a physical therapy consultation to help evaluate your physical activity level that would be appropriate for you. That setting realistic expectations of yourself can help minimize how discouraged you may feel as you start on this program.
Russell Portenoy It's also important to recognize that just as physicians vary in their recognition of fatigue and their expertise in managing it, physical therapists vary in the way that they approach patients with cancer and their knowledge of exercise as a treatment for fatigue. It is important to talk to the physical therapist and try to identify a therapist who has some experience or interest in this area.

Yoga, eating well, positive attitude aid recovery?

Question from Sydney Gal: Do relaxation techniques such as Yoga, combined with good eating and a positive attitude aid in recovery?
Answers - Russell Portenoy Physicians who focus on quality of life issues like symptom control generally tend to endorse the concept that there is an important mind/body connection and that cognitive approaches can be helpful. We recognize that the scientific evidence in support of most of the techniques that people do is very limited, yet the risk associated with yoga, with various cognitive techniques, with exercise, and so forth are so limited that there is general support for trying to employ these techniques in patients who are willing to do so.

Do support groups help with fatigue?

Question from Sydney Gal: Would becoming a part of a support group and joining others that are recovering be a good step in combating fatigue?
Answers - Lillian Nail One of the strengths of a support group is that it helps you understand that you are not alone in the experience of fatigue and you can get advice from other people who have been there in dealing with health care providers, friends, family members, employers and co-workers. We have found that people tell us that the experience of the support group isn't something that changes the sensation of fatigue but it changes their feeling that they are alone in the experience and it helps them to think of practical things to say when family members ask if they are still tired or co-workers who think that the fatigue ends when the treatment ends. And the support groups may also be very useful in helping people identify things that they can do to help other women with breast cancer understand the experience and develop effective strategies for dealing with it.

How long after chemo until normal sleep?

Question from Kaitleigh: My chemo treatments have been over for four weeks. I'm still having trouble sleeping through the night. How long will it be before I sleep normally again?
Answers - Russell Portenoy The relationship between sleep and fatigue is so very poorly understood. There is provocative evidence in a population of patients with chronic fatigue syndrome that sleep disturbance is at least a common accompaniment in fatigue if not important in causing it. Physicians who treat women with cancer related fatigue that there appear to be patients that have non-restorative sleep or actual insomnia and the fatigue appears to improve if the sleep disturbance is treated either with a drug or a non-pharmacological approach although the scientific evidence is limited, it is important for a patient who is fatigued or an insomniac or who has non-restorative sleep to have the sleep problem evaluated by a physician and be offered some strategies to improve this. The question concerning the length of time that sleep disturbance will continue after treatment is, to my knowledge, unresolved. This is an area that clearly needs much more research. Just as fatigue can be a problem related to another contributing factor, it's also important to keep in mind that sleep disturbance itself may have contributing causes that can be addressed. Anxiety, depression, the use of medications that impairs sleep and many other factors could be responsible for the sleep problem, and the fatigue, possibly could be a secondary phenomenon related to the sleep disturbance.
Lillian Nail Sometimes it helps to keep a sleep diary so you can understand how often you are awakening, how long it takes you to get back to sleep and how long it takes you to fall asleep when you first go to bed. Sometimes people are able to identify problems, like family members who are coming in to check on them, high caffeine foods that they are eating before bedtime that they didn't used to eat, increased frequency of urination or pain or discomfort that would trigger an awakening.

When does chemo leave the system?

Question from Carol: How long does it take to get chemo, CMF, out of your system?
Answers - Russell Portenoy It is important to distinguish the direct effects of chemotherapy as it circulates in the body from the long-term effect that can continue after the body has eliminated the chemotherapy through normal metabolic pathways. Most chemotherapy is eliminated from the body fairly quickly, and the fatigue that patients experience after treatment is a prolonged effect that continues long after the chemotherapy is gone. A person should not assume that feeling fatigued means that the chemotherapy is still in the body. As we said before, fatigue has many possible causes and the experience of severe fatigue should be evaluated so that these causes can be identified and treated.
Marisa Weiss, M.D. Among the many causes of fatigue, there are hormonal influences that can have a significant effect, including your thyroid gland function. In the evaluation for your fatigue, make sure that this is also checked out.

What is the normal hemoglobin range?

Question from Joan G: What is the normal hemoglobin range?
Answers - Russell Portenoy What is normal depends on the lab. Most women with hemoglobin above 14 or 14.5 would be considered to have a normal level. There are some new data to suggest that hemoglobin levels in the range of 10-12 are critically important in terms of the onset of fatigue. Many oncologists were trained to consider hemoglobin of 11 or 11.5 to be so close to normal that it is clinically insignificant. Most doctors do still not appreciate this new information that hemoglobin in that range might be an important cause of fatigue.
Marisa Weiss, M.D. When would you consider using a product like Procrit?
Russell Portenoy Based on recent studies, it's my belief that a patient with severe fatigue who has a hemoglobin less than 12 and who has no other treatable cause of the fatigue such as poor nutrition or depression or mood disturbance might be considered for a clinical trial of this drug.

Common to be tired, but can't sleep?

Question from Allison: I'm so exhausted from dealing with all the emotional ups and downs with my disease. I'm wondering how much of this overtiredness is not physical at all. Will I ever feel stronger? I barely sleep since I've been home from my surgery. I'm tired, but never tired enough to just sleep soundly. Is this common?
Answers - Lillian Nail It's not unusual for people to tell us that the experience of a recent diagnosis of cancer and starting treatment is emotionally draining and that they have difficulty sleeping. The emotional landscape tends to level out over time for most people. But not for everyone, and the problem sleeping as we have addressed in earlier questions can have many, many different causes, which deserve to be investigated.
Russell Portenoy That's an extremely good question. In patients who don't have cancer, physicians usually rely on a combination of symptoms and signs to make a diagnosis of depression. Some of these symptoms and signs are physical, such as poor appetite and weight loss, In patients with cancer, some of these symptoms and signs, including fatigue, are no longer reliable because they may be caused by the disease, by the treatment for the disease or by other factors related to the illness. For this reason, doctors usually rely on the emotional content to make a diagnosis of depression in patients with cancer. A physician might ask a patient whether they feel hopeless or helpless or have despair. A physician might inquire about the ability to experience joy. If the emotions are persistently negative, then a diagnosis of depression is suggested. Nowadays, with many treatments for depression available and relatively safe, many physicians are quick to make a diagnosis of depression and quick to offer treatment in the hope that this will improve the fatigue, the mood and the overall quality of life.
Lillian Nail One of the problems that some women have experienced is people saying to them, you are not tired, you are just depressed. This is a serious problem because it ignores the impact of fatigue and depression. It is important to have both of those problems evaluated and both of them are potentially treatable.

What are some hidden caffeine sources?

Question from Ell: Can you identify hidden caffeine sources that can keep us awake when we think we're avoiding caffeine?
Answers - Russell Portenoy Chocolate. Many soft drinks (read the bottle.) Some teas. Some over the counter medications (especially those for headache.) And some herbal remedies that one obtains from a health food store.

Normal for fatigue to get worse, not better?

Question from Page: Is it normal for fatigue to get worse instead of better?
Answers - Lillian Nail This is a difficult question to answer because the answer is "it depends." So it depends on what is going on. For women getting chemotherapy it is not unusual that their fatigue worsens with each cycle of chemotherapy. And then gradually improves after chemotherapy is over. However, if something else in their life or their treatment regimen has changed, it may be that they experience a sleep problem as a result of a drug side effect. They may have experienced the physical deconditioning that we talked about before that makes them feel tired and makes it more difficult for them to do the activities that we all do as part of day-to-day life, or a person experiencing a problem with depression as a result of confronting a life threatening illness. Even when you have gone into remission and things are going very well, that's when depression might hit. Sometimes when people finish treatment is a point of important transition and since they might feel that they are no longer actively doing something about having had cancer that this is a time where they may feel emotionally vulnerable.
Marisa Weiss, M.D. For many women, the weight gain that comes with treatment, either as a result of inactivity, the steroids that are used to minimize some side effects, changes in your metabolism, as you shift into menopause quickly. This weight gain can be very discouraging and make it harder for you to want to get up and go and be active. In my practice, I find that the more weight that my patients gain, and the faster that that weight gain occurs, the less energy they seem to have.
Russell Portenoy The implication of these comments is that unless a worsening fatigue fits a clear pattern, such as the worsening that occurs with repeated cycles of chemotherapy it should be assessed fully for the possibility of physiological or psychological factors that could worsen it.
Marisa Weiss, M.D. Recovering your energy and the resolution of fatigue tends to happen slowly with some days being good days and other days feeling like no days. You can expect that this time frame for recovery is going to be irregular.
Lillian Nail And it's not steady progress. You hit a plateau and it seems like things aren't changing and suddenly you have a day with marked improvements.
Marisa Weiss, M.D. It is those glimpses of your "old self" that can really be most encouraging.

Common for fatigue to return with work?

Question from Sandy: Is it normal to feel rested, then once the normal work routine is resumed, the fatigue hits again?
Answers - Lillian Nail We don't understand the relationship between the fatigue that people experience with cancer treatment and their life demands. It makes sense to think that as your activity levels increase you are more likely to get tired so people who were away from work and then return to work may find that they are more tired when they return to work than they expected it to be based on how things were going for them when they were not working. But the studies have really not looked at that relationship and there is a lot more work to be done.
Marisa Weiss, M.D. How do you suggest that the women manage the expectations of the people around them?
Lillian Nail I usually suggest to people that they plan ahead of time what they are going to do when they encounter specific situations so that you are not taken off guard. So when friends and family members say, you can't still be tired, that you have an answer that you have rehearsed. You can say, you know, I thought that too, and I did some research and found out that the fatigue doesn't always end right away. I expect it to be better, but it doesn't improve right away. And with co-workers, I have found it helpful for me to explain it to them up front and explain that they are the side effects that go with the treatment that I have, and this is what might happen, and this is what I might need from you, such as flexibility or scheduling. Or when I tell people I am too tired to do something that they respect that instead of telling me I can do it anyway. And the third is that if I ask someone to give me a ride home, that they are willing to do that. I try to have a plan in place for that. People can really depend on other people or have people that can be a back up for you.
Marisa Weiss, M.D. Do you have any advice for people that have a hard time asking for help?
Lillian Nail When people ask if they can help you, I finally reached the point that I needed to pay attention to that and I started looking at what other people told me helped them and I used those things to assign jobs to people including assigning a job coordinator who filters all of the assignments because it can be tiring for people who want to bring you dinner, what night, etc. The job coordinator took care of coordinating that and told me who was doing what and when it was arriving, and everything was taken care of. It made it hassle free. There are a lot of day-to-day things you can give up. A neighbor can take out the trash. Someone can do the lawn care, or the laundry. Taking stuff to the dry cleaners, all the little errands. People don't recognize that those are some things that they can volunteer to do and you don't always know what the answer is, but that would be a great project for an organization. People say, "Let me know what I can do to help" but they don't have any idea how they can be more specific than that and we need to have lists of suggestions for women to look at, to see how they can use that offer.
Russell Portenoy For patients who have the ability to obtain professional help for this type of planning there are psychologists and other health care professionals who specialize in this type of cognitive work in medically ill patients. This work may include learning about being assertive to take care of one's own needs,) blonde learning some of these techniques for handling tasks and time in a way that minimizes fatigue and improves the person's ability to function.
Marisa Weiss, M.D. I sometimes give my patients a prescription that says, "Give up the housework!"

Suggested routine to regain energy?

Question from Amanda: Can you describe what a good day's routine would be to get your energy levels up and working?
Answers - Russell Portenoy I would never presume to outline a good day's routine because there is so much variation among people when trying to deal with the fatigue syndrome. It's really important to learn the kinds of tasks, and patterns of activities, that optimize the situation for the individual. This is why taking a good history is such a critical thing for a health care provider to do when a patient has fatigue. It is really best to individualize treatment and expectations.
Lillian Nail In one of our studies right now we ask people to keep track of their activities for a few days and then we have a nurse who goes over that activity list with them and which of those things make a good day for them or what makes them feel good and what activities are optional or what things would be delegated to someone else and help them sort out their fatigue level at various times of the day and tailor their plan to do things they like to do and move other off of the plate. People have told us that they really appreciated doing that and they continued to use the plan when they were done in the pilot study. We are looking now to see if that will make a difference with fatigue.

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