Christina Cline, RN, at the University of Florida Health Cancer Center, describes one of the common symptoms of treatment for bone marrow failure diseases: fatigue.
Learn how patients can communicate about their fatigue with their health care team as well as which strategies may help.
Leigh Clark: 00:00 Hi everyone. This is Podcast for Patients with the Aplastic Anemia and MDS International Foundation. I'm Leigh Clark, Director of Patient Services. Our podcast series is brought to you with special thanks to the generous support of our patients, families, and caregivers like you, and our corporate sponsors. Thank you to everyone for supporting the series.
00:26 Today, we're going to be talking about fatigue with Christina Cline who is a registered nurse at the University of Florida Health Cancer Center. Welcome, Christina, thank you so much for joining us today.
Christina Cline: 00:40 Thank you for having me.
Leigh Clark: 00:42 So what is fatigue?
Christina Cline: 00:45 That's a great question. Per the National Cancers Institute, fatigue can be defined as a chronic or an acute condition that is associated with tiredness or the inability to function due to the lack of energy. And typically, it does not get better with rest or sleep alone.
01:12 Now there is fatigue that is related to therapy that comes with the diagnosis for bone marrow failures, and 80 to 100% of people living with bone marrow failures, um experience this type of fatigue, and it's one of the most common side effects of treatment for those who are receiving treatment for their diagnosis.
01:37 Fatigue, again, is experienced by, um, people with this diagnosis, but it impacts the activities of daily living and can range from mild to moderate to severe, depending on the patient.
Leigh Clark: 01:54 Thank you. What is the difference between fatigue and being tired?
Christina Cline: 02:01 Well, this is a great question, and it's not easy to explain. For me, the way I think to describe, um, these two is being tired is typically the way we feel when we don't get enough sleep, but it can be relieved if we get adequate rest and sleep. So tiredness is temporary. Fatigue is a lack of energy that is not resolved by getting enough sleep or just good sleep alone, and again, interferes with day-to-day activities that we may do or perform, and again, can range from mild, moderate, to severe and the duration can be short or long.
02:45 I think the most important thing with the difference between the two is that tiredness can be relieved with enough sleep or adequate sleep and rest, and fatigue is not relieved by just rest or good sleep alone.
Leigh Clark: 03:05 What are the factors that can contribute to a patient feeling fatigue?
Christina Cline: 03:12 There are a number of different factors that can contribute to fatigue in people who are affected by bone marrow failures. One of them is the diagnosis itself. Treatments for, um, the bone marrow failure such as immunotherapy, chemotherapy, those treatments kill good cells and bad cells, and can impact the way our normal cells work in our body which can contribute to fatigue. Medications that are given can also increase fatigue. Low blood counts, and low electrolyte levels are also can contribute.
03:48 For example people who experience anemia, that's a decrease in our red blood cells that carry oxygen to the rest of our body organs and when those oxygen, when those hemoglobin levels are low that can create fatigue in our in our bodies. Infections, stress lack of hormones or low hormones, pain, anxiety, depression, inadequate nutrition, um, is, is something that can contribute. Again, our, our body's primary source of energy comes from food, and if we're not consuming enough food, um, we're not giving our body then the energy that it needs. And then also inadequate sleep can contribute to fatigue.
Leigh Clark: 04:34 When a patient is experiencing fatigue, what actions or treatments can be helpful to relieve the fatigue that they're feeling?
Christina Cline: 04:47 The first thing I would say is let your voice be heard. You are your biggest advocate, and speaking with your healthcare provider and telling your healthcare team about your fatigue, describing it to them, informing them how you are feeling and how it is impacting your overall health and your day-to-day is, is extremely important. So be your biggest advocate and speak up with your team, letting them know these things.
05:18 Secondly, I think identifying what is causing the fatigue or contributing to the fatigue is extremely important on how to address it. Such as, the treatment that you may be receiving. Is it pain? Is it depression? Anxiety? Could it be a coexisting condition like thyroid imbalances, diabetes, anemia, so identifying, um, the conditions that are causing or contributing to the fatigue is also important.
05:53 And then there are also ways to evaluate, your fatigue level, that will also help you identify what is contributing to the fatigue and what is the level of fatigue at the time that you may be experiencing it. So, there are no blood tests that measure fatigue. But there are some tools out there that you can do on your own that can help you identify your fatigue patterns and also can help you identify the level of fatigue at which it is occurring.
06:29 So there's a brief fatigue inventory which is a self-reported questionnaire, and it's a diagnostic tool that can help track your fatigue, and as you are making progress with changes in your lifestyle and also as you are going through treatments, whether it's blood transfusions or certain types of therapy for your bone marrow failure. This self-reported questionnaire will help you track that fatigue. Is it hot, is it mild, is it moderate, is it severe at what levels? And, um, is it going away if I do these specific activities in my day-to-day or is it increasing when I go through certain treatments or, um, when I notice that my hemoglobin is getting low.
07:16 There's also a fatigue diary that can help you identify what affects your fatigue level. And this is a diary that can be used at home. What you do is it's a daily diary, so you would have Monday through Sunday documented, on this paper, and you're going to then put a mark in a box that's going to, um, rate your energy scale from one to six. So one being no fatigue at all, six being extreme fatigue. And on those days, if you are undergoing treatment, you would indicate that. Typically when you do, when you are receiving treatment for bone marrow failure, your counts are being monitored regularly and you'll be able to identify whether your hemoglobin level is low, and you can also document that on this diary.
08:08 So you'll be able to identify how treatment is affecting the energy levels, and then you can also share this with your doctor and your healthcare team, so that, um, together you guys can formulate a plan on how to address these when you are going through your treatments.
08:29 I think identifying the patterns is extremely important. Once those patterns are identified, then there are lots of ways that you can take action to help relieve the fatigue. Granted, it may not completely go back to baseline, but at least you then can identify ways, um, to take action against it. Maintaining a reasonable work and personal schedule, reducing certain stressors in your life if possible, Um, establishing a, a routine sleep schedule for waking up and going to bed each day. Limiting daytime napping. Limiting your caffeine intake. Avoiding alcohol, nicotine, drugs. Improving your physical activity. So being active when you are feeling your best. If you're not feeling good, then, at that day or at that time, then you know, maybe, um, set a small goal for the next day.
09:30 But definitely setting small goals for activity and increasing it as you can tolerate it is good. Light exercise would be good for the physical activity, such as, um, walking, biking, yoga. And then important, I feel it what, um, very important is nutrition. Eating foods that are rich in iron and vitamins. Staying hydrated. Again, as I said earlier, you know, our body's primary source of energy comes from food, and if we're not consuming enough food, then our body is not creating the energy that it needs.
Leigh Clark: 10:07 Thank you so much for those wonderful tips and, uh, for patients to think about and the way to track their fatigue, because I'm sure that will be very helpful in talking to their, healthcare team. Is there anything else patients should know about fatigue?
Christina Cline: 10:25 Definitely the Leukemia Lymphoma Society has information on fatigue and things to identify and look for. I think the best way is, you know, to really advocate for yourself and speak with your healthcare team and utilize these tools that are out there. Fatigue is common in patients that have bone marrow failures. It's also common in patients that are receiving treatment for those bone marrow failures, and being a voice and being an advocate with your healthcare team and tracking them and having control and identifying your patterns I think is the key to helping address and taking action against fatigue.
Leigh Clark: 11:13 Thank you so much, Christina, for sharing your time and your expertise with all of us today and talking about fatigue. You can find out more about bone marrow failure diseases on our website at aamds.org. Follow us on Facebook, Instagram, and Twitter, or give us a call at our helpline which is 800-747-2820. This concludes our podcast, and thank you, Christina, for joining us today.
Christina Cline: 11:45 Thank you for having me.