Chronic Fatigue and Coping with Its Impact on Life
René
I manage my energy like a budget. I know that there is only so much of my energy to go around, and its first come, first serve. I make it to work every day, but barely. I try to get my work done: I know my job well, and no one is directly supervising me. I find it difficult to have enthusiasm for any new projects—I know this disappoints my boss, who is more of a cheerleader. There are times when I am sitting at my desk all day long, and if I am honest with myself, I get very little done. A bad day at work often becomes a bad day at home. When I feel so achy and spent, it’s hard to come home and prepare dinner and get my kids ready for the next day.
René’s Boss
René has worked for my family business for many years, and she’s earned some independence. But I now have second thoughts about her role here. She barely does anything anymore. René does come to work, but she is pretty unapproachable. I find myself avoiding her; I just find someone else on the staff if I need help with a new project. For a while, I dealt with it. But now when I see her becoming impatient with a customer or not enforcing the new billing policy, I realize it’s time for a change. I did not give her a raise last year.
It’s a lot different than it used to be. She is so unhappy. Work saps her energy. René is exhausted when she comes home, and after an hour of the kids’ homework, she goes right to bed. I am the only one who communicates with our kids’ teachers. I don’t think the teachers even know who she is. You would think it would be better on the weekends, but no. René sleeps in and does not want to do anything fun. I have just learned to plan things around her. She pretty much neglects me and my needs, and I am really angry—and it shows.
Living with CFS is challenging, as anyone who suffers from this medical problem can attest. In some cases, CFS forces harsh decisions, and it seems like every choice requires an automatic opportunity analysis. Do I really need to expend energy doing this? How can I not do that? Whom will I disappoint if I don’t go there? Not only must the patient live with the physical symptoms, but she must also confront the fallout her behavior has on all those around her. CFS, of course, is a silent disability; most sufferers find that sympathy and understanding are very scarce resources.
This chapter considers the impact of CFS on the lifestyles of people who have the condition and discusses methods to overcome this fatigue. Some researchers have estimated the economic burden of CFS into hundreds of millions, perhaps even billions, of dollars. It’s easiest to quantify the cost in terms of the high medical expenses, such as doctor visits and prescription drugs. Accounting for the individual’s lost productivity is harder to measure; absenteeism constitutes a larger part of this cost, as does “presentism,” which is a term that refers to being at work but accomplishing little while there. In turn, insurance companies and the federal government pay billions in payments to individuals disabled by CFS and the medical conditions closely linked to it, such as fibromyalgia, chronic pain syndromes, and treatment-resistant depression and anxiety. These are expenditures spread over the entire population, indirectly affecting health care costs, insurance premiums, and even taxes.
Imagine someone like René, operating in her own small sphere, both at home and at work. Then extend the ripple effect outward to all the other many people with CFS, and soon you can see that their plight has a major impact on their families and their workplaces. The impact does not have to be negative. The goal of this book is for readers to take better control over their CFS and their lives. The greater the independence the individual with CFS can attain, the lighter the burden of the disease is on herself and others.
The highest cost is to the patient with CFS and their family. CFS is insidious; quietly, over time, it sweeps up many victims. Living with CFS affects one’s own sense of self and alters how the patient views work and relationships. In this chapter and throughout the book, I have used case studies and other interview techniques to paint this picture. The case studies revolve around patients I have cared for and known for years. I have made every effort to disguise them, to the extent that I doubt that anyone would recognize themselves, as I value their privacy and appreciate the chance to communicate their stories.
Interactions with Family Members
Sometimes interactions with specific family members are positive, but usually the reception is quite mixed. Many people with CFS were eager to describe how their families have dealt with their illness.
•My husband and daughter have been very supportive, and they recognize the early signs that I am overdoing things and often tell me to rest. Apparently, my stride changes, and my speech starts to slow down. They see this happening and know that it’s time for me to take a break—and tell me so.
•My husband and children would walk over hot coals for me, but my sisters and my parents—they just don’t get it, or they don’t want to get it. I’ve given up trying to explain my illness to them.
•My husband and I work together, and he has always insisted I continue to work no matter how much I’ve wanted to quit. There have been times when I wanted to go home at lunchtime, and he insisted that I finish out the day and said I could nap when I get home.
Amber and Elliot: CFS in a Young Marriage
Amber was referred to me by the local hospital. On two consecutive Saturday afternoons, she presented to the emergency room late at night with chest pain. Both times she was convinced that her fast heart rate and labored breathing were signs of a heart attack. The ER staff did an extensive workup; they even arranged for Amber to see a cardiologist the next day. No heart disease was detected, and she felt some temporary reassurance. A week later, Amanda returned to the hospital with the same symptoms. Fortunately, the same doctor saw her during both of her visits, and they developed an easy trust. The doctor was not quick to diminish the sincerity of Amber’s complaints; she was not offended by his honesty. When the doctor explained to Amber that she was having panic attacks rather than cardiac symptoms, she quietly agreed. They both thought it was a good idea for her to visit with a psychiatrist.
Two days later, I saw Amber in my office. She explained that she had completed her PhD several months earlier and recently been hired as an assistant professor at a local university. Now in her first semester of teaching, Amber was leading three freshman classes. “There is so much pressure on me. We have a new dean, the building I work in is under renovation, and my students don’t respect me.” She continued, “I have been through a lot. I have been a graduate student for the past ten years, and my husband and I anticipated that we would have more fun and freedom once I started this new job. It’s actually worse than before.”
Amber offered me more background. She was always an excellent student. In high school, she had played lacrosse and basketball and earned a scholarship to Johns Hopkins University. She played two years for their team and then lost interest once her recruiting coach left. In her junior year, she diverted all her energies to study. Amber was highly regimented, studying many hours during the school year and completing desirable summer internships. She was recruited to Harvard and contributed to several important research articles while there. On graduation day, Amber was honored by her faculty, and more than one professor remarked that “she did everything we asked of her.” Throughout her education, Amber had one boyfriend, Elliot, and their relationship evolved without much drama. They were married several weeks after graduation in an elaborate wedding planned entirely by Amber’s mother. Two weeks later, the couple moved to her new post as a junior faculty member at a top Midwestern university. Elliot found an engineering job at General Motors.
Since her senior year in college, Amber has reported high levels of anxiety and profound sensations of fatigue. Her father took her to many physicians in her late adolescence, and she was started on antidepressant medication. This medication quieted her panic attacks, but her lethargy continued. After a while, she stopped asking the doctors about her chronic fatigue. When I met her, Amber had been on a stable dose of the antidepressant sertraline (Zoloft) for six years.
I asked Amber if there was any significance to her coming to the ER on two consecutive Saturdays. “Maybe. During the week, I know exactly what to do. My classes start at eight a.m., and my last class is out at four p.m. On days that I don’t teach, I have busy office hours. Faculty meetings and my research lab structure my other weekdays.”
What about the weekends? “Bad time for me!” Amber responded. “I don’t want to wake up on weekends because Elliot wants to get out and do things. I don’t have the energy to make plans. When he asks me what we are doing or where we are going shopping, I shut down. I get irritable. I can’t make myself socialize, and I just want to stay in bed. There was a small faculty party the other night, and I told them I was sick. I can’t keep using the sick excuse with Elliot anymore. He is getting really bored and resentful. I am worried that he is losing faith, which is so sad because we worked so hard to get here, and it’s a disaster.”
I wondered whether the troubles encountered by this high-functioning woman were due to being far from home, starting a formidable job, or adjusting to a new marriage. I questioned Amber whether she may have married prematurely or was having second thoughts about taking her new job. She rejected each of these suggestions. “It’s not the job, it’s not the new city, it’s not Elliot; it’s my fatigue,” Amber lamented. “I feel bad that I muster just enough energy to get through my week, and I have nothing left to give my husband.” She added, “I love him, but I hate that I am disappointing him so much. I should be able to unpack and organize my stuff or go with him to the store to buy some new things. But I just can’t find the energy to get it done.” Amber reported that she makes every effort to appear upbeat for her students and colleagues. “I’m a perfectionist and a good actor, but I can’t fake the same attitude at night and on weekends.”
I spent some time talking to Elliot, too. He was angry and frustrated and not feeling charitable toward his new wife.
“I just don’t know what’s wrong with her. All she does is stay in bed. She seems to do okay at work, but when she is with me, we do nothing. I work with lots of talented people, and they all do things after work. I go home to Amber, and she is totally unavailable. She has no interest in sex. I have even gone to the casinos a few times just to have something to do. It’s so bad, the blackjack dealers now recognize me.” At the next appointment, Elliot announced that he planned to leave if things did not improve with Amber. “It’s not a threat—that’s not my style. It’s just that I signed up for one person and was delivered another.”
Amber’s case is typical of a person with CFS. CFS can affect the young and old, high school dropouts and Ivy League graduates. It causes deep psychological burdens and distorts family relationships. With that understanding, this book is intended to cover the best ways of diagnosing CFS and differentiating it from other medical and psychiatric conditions. Effective treatments, including medications, counseling, and behavioral changes, are thoroughly discussed. The good news is that treatment ultimately did help Amber. Her relationship with Elliot greatly improved, and she began to thrive at work.
For People with CFS, Sustained Exercise Lowers the Pain Threshold and Increases Pain
There are those who believe that exercise is the key to nearly every problem, including chronic fatigue. Although some exercise may be beneficial, researchers have found that exercising as if one did not have chronic fatigue may be misguided. For example, in one small study of five subjects with CFS and five healthy subjects, researchers found that exercise lowered the pain threshold. This translated into more pain for the subjects with chronic fatigue earlier than it did for the healthy controls. For CFS patients, pain seem to be intensified by trying to exercise at the same level as people without the condition.
In this study the exercise comprised three five-minute periods of exercise on a treadmill, with increasing inclines of the treadmill at each stage. The CFS subjects were ages 28–49, and the control subjects were ages 30–54. Pain levels were evaluated by using pressure on the skin at the start of the exercise, after each exercise period, and 20 minutes after the final exercise. Exercise increased in the pain levels in the controls which means they could tolerate pain better, but the opposite effect occurred with the CFS subjects.1 This small study concluded that if people with chronic fatigue syndrome exercise, they need to stop sooner than people without CFS. They should not try to “keep up” with their peers in terms of exercise.
Note
1.Alan Whiteside, Hansen, Stig, and Chaudhuri, Abhijit, “Exercise Lowers Pain Threshold in Chronic Fatigue Syndrome,” Pain 109 (2004): 497–499.
Relationships with Friends and Coworkers
Most of us spend a good deal of time at work, and relationships with coworkers can be both exhilarating and exasperating. Through our Facebook survey, we asked individuals with CFS to talk about the impact of their symptoms on their work life. Their experiences varied:
•No one has a clue as to how I really feel. I stopped trying to explain how I feel after a coworker told me that I did not get enough sleep and that was the only reason I was so tired and missed so much work.
•I pulled myself together to have lunch with a senior colleague with whom I had worked in the past. She had mentored me, and I felt comfortable telling I her about my CFS. She barely let me describe my condition before she blurted out that she had the same thing for a few weeks. She took some supplements she found on-line and insisted that all I needed to do was to take the mineral and I’d be fine. She made it sound so easy. If she had listened, I would have told her of the many medications, supplements, and other remedies I had used for my fatigue. It was then I realized how little she really understood me and the condition, and I was so annoyed that I changed the subject. I left lunch feeling even more alone.
•I have an understanding boss. She has known me for a year, and we talked about my chronic fatigue. Her sister has CFS, and she knew a lot about it. When my grandmother died, she noticed that I could not go to her funeral because I was unable to find the strength. A few people at work wonder if I am putting on an act, but most are supportive. My boss knows that I sincerely want to get the work done. She offered to let me work remotely, and I only come into the office two times a week. I miss the camaraderie of the office, but remote working has made me more effective. I am worried that my next boss won’t allow this arrangement to continue.
Olivia and Work
Olivia became my patient in 2013, and my first meeting with her was not ideal. Thirty years my junior, she had no trouble expressing how disappointed she was that she could not find a female doctor, that she had to wait a few weeks to see me, and that the appointment started at 2:15 p.m., 15 minutes after it was scheduled. She was a professional manager, she explained, and punctuality was of utmost importance.
Olivia explained that she had just been transferred to the Detroit suburbs from Washington, D.C. There, she had worked as a restaurant manager for a growing upscale steakhouse, and because of her stellar performance, she was promoted to open a new location down the street from my office. Olivia was on an antidepressant medication and was only interested in finding a doctor to continue her care. She did not feel the need to reevaluate her diagnosis and elected to forgo our standard practice of diagnostic testing for new patients. “I’m fine. I just need someone to fill my Lexapro.” This first interaction with Olivia was unsatisfying, but I acquiesced and refilled her antidepressant.
Olivia returned a month later. Still arrogant, she reported that things were not going well at the new restaurant. Several new hires had left abruptly, and she was doing the job of three people. “I am exhausted! I stay at work for eighteen-hour shifts just to get things done.” She made an unexpected appointment two weeks later and told me that senior management in D.C. was sending her an assistant manager. “I am relieved that headquarters knows how hard this location is—once they get here, they will see what a mess I inherited.”
Three weeks later, Olivia came to my office, this time in tears. “I was fired. They said I was doing terribly. All the cooks and wait staff said I was impossible to work for. Nobody supported me. I came all the way to this city, and I was let go. I don’t know what to do.”
With few options at this point, Olivia knew she had to do things differently. She sat for psychological testing and opened up in therapy. Although she initially presented in a secure, polished fashion, Olivia’s testing revealed high levels of both depression and anxiety. She also reported having long-standing problems with concentration and distractibility. Her fatigue score was in the 90th percentile when compared to other women her age.
I sat down with Olivia and shared the results of the testing. “I think you have depression, ADHD, and chronic fatigue syndrome.”
After a moment, she responded, “I don’t disagree. When I was younger, I was treated for ADHD. When I started working in the restaurant business, I did not have insurance, so I could not get my ADHD medications filled. Everyone in the kitchen had cocaine, and after work, we partied every night. At my last job, my boyfriend was a dealer, and I used cocaine all the time. I think it made me awesome at work. I had so much energy that I looked like a superstar. I moved here to get away from the coke and my controlling boyfriend. Without it, I learned that I could not function, but I thought the feeling would pass. It didn’t.”
Olivia continued, “I became explosive to everyone around me. Even weeks after stopping the cocaine, I could not motivate myself to organize anything at the restaurant. All the people I hired quit after a few weeks. I was at work all the time, but I got nothing done. Since I was fired, I have been in my apartment sleeping all day for weeks. I feel so sad to realize that the success I had at my previous job was just cocaine driven.”
Olivia agreed to treatment for her ADHD, and to her delight, her fatigue improved as well. She found a new job in a catering business. She met and married a family physician and decided to stay in the Detroit area. She now manages their busy practice and is responsible for its rapid growth. Seven years after I met Olivia, she remained on ADHD and antidepressant medications. Her craving for cocaine stopped once her ADHD and fatigue were addressed.
“I do so much better when I am on ADHD medication. During my pregnancy, I didn’t take anything. I was exhausted and really could not work, but I knew it was for a short period. I can tolerate the discomfort when I know there is light ahead.” Olivia decided not to breastfeed her second infant so she could return to medications immediately after delivery. “My son can thrive with formula, but I can’t function without my medications. It is really important that I feel well so I can be at my best for him and for my job.”
CFS Affects Self-Esteem
CFS directly interferes with self-esteem as a person’s self-assessment. Self-value is eroded every time the person is unfairly accused of being lazy or seeking the fast track to disability. CFS involves more than feeling tired; it’s a feeling that your body weighs a ton and you cannot move it. You need to move it, and you want to move it, but you just can’t. CFS is not simply being overworked or stressed out. Rest or relaxation is not the magic elixir. People with CFS may know that the condition is not of their making, but they still blame themselves and assume that somehow, they are contributing to their own suffering.
Our Facebook survey inquired about self-concept. Some people passively accepted their condition, but most had little internal reserve to counteract the negative energy that CFS spawns. I have included a sampling of the various comments that respondents offered about how they feel about themselves in relation to their illness:
•For me, the hardest part about this problem is not knowing how I will feel from day to day, even if I have a few good days. It’s not knowing how stress will affect me. Not knowing if the headaches will come back again, or the swollen neck glands, the trouble sleeping at night. Not knowing what is going to make me worse. Not knowing if I can talk to anyone about it. And not having anyone to relate to in my healing process. It’s very lonely sometimes.
•People don’t understand CFS; they think you get sick and then after a while, you get better—like when you get the flu. Or they think that if you’re fatigued, then you should go to sleep, get some rest. But you can sleep for 10 or 12 hours with this thing, and then wake up, and you don’t feel any better at all.
•I’ve mostly learned to live with it, but I cannot keep up with everything like I used to. I felt like a failure most of the time. I still do.
CFS is not exclusively a women’s malady; although women have a greater risk for CFS, men may also suffer. I met Theo and JJ many years ago and maintain a professional relationship with both. Although they do not know each other, I often wish I could introduce them. Both men have severe CFS, and both have received similar treatments. Their self-concepts could not be more different.
Theo and His CFS
Theo was referred to me by his primary care doctor. He was raised in Michigan but lives on a barrier island in South Carolina. He returns to Michigan regularly to visit his nieces and parents. Nearly 20 years ago, while in his 20s, Theo’s partner died of an HIV complication. To his surprise, Theo inherited a large estate. Despite his wealth, he lives alone in a modest home and spends very little money on himself. He has not worked since his partner died and draws no disability income. Theo greets his Carolina neighbors warmly but makes little effort to engage anyone in his community. When he visits his family in Michigan, I see him to catch up and review his medications for CFS.
Very little happens between visits, and our visits took on a bleak routine. Several years ago, Theo started and then stopped renovating his increasingly dilapidated home. A hammer has not entered the doors in five years. His lives between the aluminum studs and seems not too concerned that another winter is coming. He does not act depressed and enthusiastically defends the effectiveness of Mydayis, the medication he takes for off-label for CFS. “Without my medicine, I would sleep all day and not even be motivated enough to pay my bills,” he says.
Theo openly shared his self-disdain. “Why would I finish my house? It does not bother me, and I really don’t invite anyone over. I have no interest in working. I am not a go-getter, and there is no boss who would put up with me.”
“Theo,” I asked, “You are living far from family—you must be lonely. Would you consider trying to find a new relationship?”
“No,” he replied. “I have nothing really to add to anyone. I had a relationship so many years ago that now it doesn’t even seem real to me.”
Theo and I seem to have nearly the identical conversation every three months for the past decade. He tends to reject any new idea I have for him to improve his situation. I am confident that the medications he takes are on target; his fatigue is amplified if he does not take his medication, and on some level, he is benefiting from treatment. I have concluded that Theo’s progress has plateaued; he has allowed his CFS to define him and limit his potential to find personal fulfillment.
JJ and Deb
When I met JJ, he was ambivalent about the need for treatment. Deb, JJ’s wife, insisted that he seek treatment, but when I met the couple, it was clear that JJ was there solely to placate Deb. JJ barely spoke, but I learned he worked at a local hospital. Deb worked at the same hospital in the admissions department. They had no children and had no clear plan to work on her infertility. Both JJ and Deb struggled with obesity.
Prior to his treatment, JJ displayed passive personality traits. He had always struggled in school and had problems with attention and learning. He muddled his way through college but was chronically depressed. His weight gain started in his early 20s, precipitated by one of the medications he was given for depression. By the time I met him, he was well over 300 pounds and gaining more every year. He seemed to be in a serene relationship with Deb; she was doting and attentive, and he was appreciative of her can-do attitude. I pressed him hard to come up with some goals or life objectives. He thought about it for a minute, looked at Deb, and looked back at me. He could not generate an answer.
In addition to obesity, JJ had long-standing fatigue, narcolepsy, and chronic migraines. He had started a medical workup (at Deb’s behest) and no clear cause of his fatigue or pain was identified. In the next few weeks, he allowed me to complete the evaluation. I concluded that JJ had CFS. I devised a comprehensive treatment plan involving behavioral therapy and centering on the wakefulness-promoting drug, modafinil.
When I assess the effectiveness of a medication, I use three basic categories to determine its overall effect: mildly effective, moderately effective, or extremely effective. JJ’s response to modafinil was in the third category. Within a few weeks of starting medications, JJ hit a stride. His focus and concentration improved. His energy level normalized. The medication decreased JJ’s appetite, but more importantly, he adopted disciplined eating habits and daily exercise. His weight dropped precipitously, and within 15 months, his BMI was within the normal range.
Good things started to happen to JJ at work. He was promoted quickly, and within six months, he was in charge of his department. A year later, he enrolled in an MBA program, and before graduation, he was offered a supervisory post in the hospital.
At every turn, JJ found success, and he developed sophisticated ways of defining himself. Soon I realized that his relationship with Deb also changed. He started attending appointments without her and expressed his dissatisfaction with her. For the first time, JJ announced that he resented Deb’s infertility and her unwillingness to do anything about it. JJ made some faint effort at marital therapy, but their marriage was broken by conflict, and it ultimately failed. The poignant twist was that although it was Deb’s suggestion that her husband enter treatment, once he achieved success, his plans did not include her.
Some Ideas to Consider to Improve Chronic Fatigue
In earlier chapters, I discussed the benefits that may accrue with the use of stimulants to resolve chronic fatigue, and many individuals have found greater energy with the use of central acting medications. Here are a few other ideas to consider:
•Reconsidering what “exercise” is
•Ask yourself if you are tired or sleepy (no, they are not the same)
•Consider warm water hydrotherapy
•Get some exercise if you feel well enough, but stop before you are tired
•On bad days, give yourself a break
Reconsidering “Exercise”
For many people, exercise means a two-mile run and sixty minutes of yoga. To others, exercise happens when you sweat at Pilates, run the treadmill, or work the weight machine. But for a person with chronic fatigue, particularly someone who has been immobile for some time, exercise may need to be redefined. In these situations, start slow and expect to make small, incremental changes over time. When you are trying to regain fitness, exercise could first include walking to the end of the street and, later that month, walking around the block.
Exercising could include dancing at a comfortable pace to your favorite songs, and it might include walking around outside and looking at birds, with or without binoculars. Exercise need not be regimented or executed in perfect time. Start slow, have realistic expectations, and gently increase your capacity. There need not be a race to full fitness. Do not make the mistake of joining an expensive gym before you have a good idea of how you can use the facility. As you reenter the world of fitness, consistency is more important than exertion. Engaging the services of a recreational specialist or a personal trainer, particularly if they understand CFS, can be a helpful guide to restoring your physical well-being.
Most people don’t drink enough water, and this unduly taxes their renal and GI systems. Some limit their drinking water because they are fearful of bladder control—sometimes their reticence to drink puts them on the verge of dehydration. Avoid this problem! You don’t have to drink eight glasses of water, but most people need at least four to six cups of water (or other fluid) per day. Don’t achieve your fluid intake solely by consuming caffeinated or sugary beverages. Water may be boring, but it’s usually best for the body. Here’s why: water helps you avoid constipation, flushes the bacteria from the bladder, improves digestion, and is good for your skin. Even if you are having an inactive day, you still need water. And if you are having an active day, you likely need more water, especially when the temperature soars in the summertime.1
Note
1.Heidi Godman, “How Much Water Should You Drink?” Harvard Health Publishing, July 18, 2018, https://www.health.harvard.edu/staying-healthy/how-much-water-should-you-drink (accessed July 25, 2019).
Ask Yourself If You’re Tired or Sleepy
Many people, including many physicians, believe that if a person is tired, sleep will be the remedy. Sleepiness is a ubiquitous part of the circadian rhythm; almost everyone feels sleepy at some point during the day, and it usually signals us that it is time to take a nap or prepare for a night’s sleep. For the average person, a good sleep resolves their sleepiness. In those with CFS, sleep does not restore the individual, and many people with CFS live their lives feeling perpetually sleepy. Cheryl, a dentist newly diagnosed with CFS, told me, “I could sleep fourteen hours and still feel tired. I sleep enough in terms of hours, but my body always feels worn out.”
Sleep and CFS have a complicated relationship, and this topic is further explored in Chapter 10. Throughout the book, methods of countering CFS and sleepiness are addressed. Even if these strategies are optimized, people always ask about their continued use of caffeine. It is an important issue that needs to be considered.
Sometimes small amounts of caffeine, delivered courtesy of Starbucks coffee, Lipton Tea, or the Coca-Cola company, give a needed boost. In general, if you are drinking or craving more than two cups per day, you might be self-medicating for an underlying sleep disorder or CFS. If you cannot limit your intake, a referral to a sleep specialist can be helpful in sorting out the potential issues. Countering these medical conditions with appropriate technologies or medications can bring far greater fatigue relief than even high doses of coffee. On the other hand, limited amounts of caffeine may revive your energy levels. People have been consuming caffeinated beverages for hundreds of years, and moderation is generally a good policy.
Postexertional Malaise: What Is It?
Nearly everyone feels tired and fatigued after exercising more than usual. Postexertional malaise refers to the feeling of exhaustion that people with chronic fatigue experience after they move about (not necessarily exercising) more than is typical for them. They may feel well during the activity, whether it’s spending an afternoon at the mall or walking the track at the gym. But for the person with CFS experiencing postexertional malaise, the “crash” negates any of the positive momentum realized during the activity.
Consider Warm Water Hydrotherapy
Some researchers have found that even briefly soaking in a hydrotherapy pool improves symptoms of chronic fatigue. Hydrotherapy might even offer a cardiac boost. In a study published in the South African Journal of Physiotherapy, researchers noted that warm water immersion had been found to improve heart rate and heart rate variability (HRV) in healthy subjects. The research team set out to evaluate warm water immersion therapy in healthy subjects and to compare the effects to individuals with CFS. All the subjects were evaluated for HRV, meaning the intervals between heartbeats before and after immersion in the warm water.1
The researchers did not find a difference in the heart rates of the subjects with CFS compared to the healthy control group subjects; however, they did uncover a lower HRV in the subjects in the CFS group prior to immersion in the warm water. After the immersion, the CFS subjects had the same (normal) levels of HRV as the healthy controls. This may mean that warm water immersion could help to stabilize the HRV of people who have CFS.
Suffice it to say that warm water immersion is pleasing to an aching body. This small study suggests that the benefits of this practice include stabilizing HRV in individuals with CFS. The significance of this cardiac effect on long-term outcomes is dubious, but it reinforces the reasons you might want to hop into a Jacuzzi. Before it can be considered a proven practice, further research is needed with a larger number of subjects.
Chronic Fatigue Syndrome + Undiagnosed ADHD Increases Fatigue Intensity
Some researchers have found that the presence of ADHD, along with CFS and depression increases the intensity of fatigue. It also is linked to an earlier age of onset of CFS. In a Spanish study of 158 subjects with CFS, the researchers retrospectively (going back to childhood experiences) diagnosed ADHD in 47 subjects (30%). Of these subjects, 33 still had ADHD (21% of all the subjects). The researchers found that the ADHD subjects had an earlier age of onset of chronic fatigue syndrome (age 30) than the subjects who did not have ADHD (35 years). The ADHD + CFS group also had higher rates of anxiety and depression. The researchers draw the same conclusion that fuels this book; treatment with medications used to treat ADHD might be helpful in the population of ADHD + CFS patients. This group also had a higher risk for suicide.1
Note
1.Naia Sáez-Francás, et al., “Attention-Deficit Hyperactivity Disorder in Chronic Fatigue Syndrome Patients,” Psychiatry Research 200 (2012): 748–753.
Get Some Exercise—But Stop Early before You Tire
CFS fluctuates in intensity; there are good days and days where you think you can’t go on. On the better days, it’s best not to try to cram every possible activity into this vanishing window. If you push yourself too hard, you may hasten the inevitable crash. Instead, before you try a new challenge or add an extra task, ask yourself the following questions, and then make an informed choice.
1.Is this activity I am considering something I can take slowly, in case I run out of energy? For example, if you’re thinking of walking a few blocks to the store, keep in mind that you also must walk those few blocks back home again. Maybe your goal is doable. But if you are thinking you feel so good that you want to walk a mile to prove you can do it, then reconsider. Take this attitude toward whatever energy-depleting tasks you are considering by breaking the task down into smaller steps.
2.Am I thinking about doing this activity because I really want to do it? Or is my motivation guilt or frustration? (“I never do anything anymore! I’m so awful.”) Ask yourself this question and see what pops into your head. If it appears that you would just like to do this activity, such as having lunch with a friend, then seriously consider it.
3.Am I thinking of saying “no” to this activity because the last time I tried this (assuming it’s not a very active activity like ice skating or skydiving), I felt bad afterward? Again, could you break the activity down into steps and try the first one or two steps? Then, if you seem okay, perhaps try one further step of this activity.
Advice from People with CFS
People who have been “in the trenches” and are directly suffering from CFS know how difficult this illness can be, and some of them have offered some advice to their fellow sufferers, which is listed below.
•Stop doing anything that isn’t absolutely necessary. Just stop!
•Pace yourself! It’s important with this illness. It doesn’t matter if your friend can run a mile and you can barely run a few steps. This is not a competition. You need to be able to walk safely before you ever consider running. (And running may not be in the cards for you.)
•Stop worrying so much about what other people think of you. No matter what you do, some people are going to criticize you. They just don’t get it, and you can’t make them know what this illness is like unless they get it themselves. And you really don’t want them to get it. Well, maybe for a day or so.
•On the bad days, give yourself a break. On some days when you feel very weak and unable to do much (or anything), don’t try to perform activities that you know you cannot do. Give yourself a break. It’s not your fault that you have CFS. It’s not anyone else’s fault, either. It just is the way things are today. Tomorrow will surely be much better.
This chapter covered some basics about how fatigue affects the lives of people with CFS and some nonpharmacological ways to improve your own fatigue levels. The next chapter covers chronic pain, a frequent problem experienced by most people with CFS.
Note
1.Romy Parker, et al., “The Effects of Warm Water Immersion on Blood Pressure, Heart Rate and Heart Rate Variability in People with Chronic Fatigue Syndrome,” South African Journal of Physiotherapy 74, n. 1 (August 2018), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6131699/pdf/SAJP-74-442.pdf (accessed July 24, 2019).