Medically Diagnosing Chronic Fatigue Syndrome
Corrie had always been a cautious person and has long maintained a close relationship with her family doctor. She was always up to date with her annual physicals and mammograms. Corrie was a devoted mother of three adult children and was married to Lewis, a recently retired school principal. Corrie remembers her younger self as trying to keep pace with her older but energetic husband. No longer. “For the past several years, my energy is gone, and I feel like a shadow of my former self,” she tells her doctor. Tasks that were easy to perform in the past—even getting going in the morning now—take enormous energy. Corrie doesn’t know what’s wrong with her, but she knows something isn’t right. She regularly loses her keys, and last week she forgot to bring in the frozen groceries from the car. Even when she sleeps for 10 hours, Corrie wakes up exhausted.
Although her doctor has sent her to numerous specialists, Corrie wonders again if the doctors have missed an underlying medical condition that explains her fatigue. She asks, “Is this menopause? I have not had a period in five years, so could this be my hormones? Or is this the start of Alzheimer’s disease? Is this a sleep disorder? Should I change my diet or exercise more? Which medical specialist should I visit next? How many more tests will be ordered?” Corrie has chronic fatigue syndrome, and what she needs is a careful but not endless medical examination and a definitive treatment plan.
Sometimes—and very distressingly—it takes years for people with CFS to receive an accurate diagnosis, and that means years of frustration and wasted opportunities. It also means meeting with at least a few medical professionals who may wonder aloud if the patient is depressed or has another psychiatric diagnosis. Some sufferers of CFS are accused of “malingering” or just exaggerating their symptoms to avoid work in the pursuit of disability payments.
Corrie doesn’t know how to reenergize herself, but if she could do so, she would. She is not depressed. She understands that lethargy and poor motivation can be signs of a biologically based depressive disorder, yet despite her concerns over her chronic fatigue, she does not identify with some of the key components of depression: sadness, pessimism, and suicidal thoughts. Happily married and financially secure, Corrie does not have life circumstances that cause her psychological distress. And like most others with CFS, Corrie really does want to work. She has no interest in filing for disability.
Performing a Differential Diagnosis
Doctors are trained to not make snap assumptions about what’s wrong with a patient. Thoughtful clinicians will perform a differential diagnosis, which means they will listen carefully to their patient’s complaints and consider a whole array of conditions and diseases that might explain the presentation. Corrie’s complaints have been long-standing and persistent: chronic fatigue, muscle aches, sleep problems, and a lack of mental clarity so profound that she calls it brain fog.
After considering all possible causes, doctors use their skills of physical examination and understanding of laboratory tests to narrow the diagnosis down to the most likely disease suspects. The ideal physician for the chronically fatigued patient acts like a quarterback—resourceful, encouraging, and always planning the next steps. The examination process for chronic fatigue is extensive, but it needs to be completed in a reasonable period. If the physical examination and lab values are negative—as they often are—then the doctor moves on. She doesn’t repeat labs and doesn’t send the patient to a specialist unless there is good reason to do so. A prolonged and redundant workup is very stressful for the patient. Sometimes the most honest response a doctor can offer her chronically fatigued patient goes as follows: “I cannot find any medical condition that explains your fatigue. We have ruled out urgent and imminently threatening medical conditions. As CFS is a diagnosis of exclusion, I suspect that is what you have.” This decisive language is reassuring to patients with CFS.
Unfortunately, the CFS diagnosis is only half of the work. There are no standard treatment protocols for CFS as there are for other common medical conditions such as asthma or congestive heart disease. It is disappointing to find the proper diagnosis only to learn that dependable treatments are not available. Chapter 1 expands more fully on these issues. Still, I caution the reader that my ideas are novel and have been neither widely adopted nor widely rejected by the medical community. This book and some of my other writings on the topic are intended to bring other clinicians into this important discussion.
This chapter covers diseases that may resemble CFS. These conditions carry universally accepted diagnostic techniques and widely adopted treatments. It is important for the individual with CFS to know what conditions mimic CFS to ensure they are not given a diagnosis that does not fully explain their condition.
Other Conditions That May Mimic Symptoms and Signs of CFS
The very name “chronic fatigue syndrome” demands that the clinician distinguish between long-standing and newly apparent fatigue. Many medical conditions are associated with fatigue, including heart disease, lung disease, kidney failure, infections, malignancies, and other maladies. Overall, these ominous medical conditions yield quickly to routine screening, and physicians can accurately diagnose them early on. For this reason, we do not discuss them further in this chapter. Instead, we focus on other less imminently life-threatening conditions that may mimic CFS. Hypothyroidism, fibromyalgia, Lyme disease, type 2 diabetes, multiple sclerosis, iron deficiency anemia, and vitamin deficiencies such as B12 or magnesium all fall into this category. These disorders are marked by persistent fatigue as well as other symptoms and signs. Comorbid psychiatric diagnoses, which refer to other psychiatric issues often present in people with CFS, are covered further in Chapter 5. For example, in the listless and frustrated patient, major depression is often mistakenly identified as CFS.
Keep in mind that it is possible to have one or more of the disorders covered in this section and have CFS, but that is generally unlikely, with some exceptions, such as fibromyalgia. Certainly, if a patient has any of these disorders, treatment will provide improvement to at least some symptoms—and if extreme fatigue continues after treatment, then the doctor can reconsider CFS.
Hypothyroidism
Low levels of circulating thyroid hormone, also known as hypothyroidism, is a common problem in adults. As many as 10 million Americans and up to 10 percent of all adult women are hypothyroid.1 This condition can cause fatigue and brain fog as well as headaches. Other common symptoms of hypothyroidism include cold intolerance, decreased libido, weight gain, and constipation. Hypothyroidism is readily assessed with a simple blood test, and if the test reveals an out-of-range thyroid finding, supplementation may be needed.
One important point: it is not intuitively obvious, but because of various feedback mechanisms between the thyroid gland and the pituitary gland, higher laboratory levels of thyroid-stimulating hormone (TSH) in tests indicate low levels of thyroid. The normal levels on the TSH test range between about 1 mU/L and 2 mU/L, meaning that if a patient’s TSH is 9 mU/L, then she is probably hypothyroid. There are some exceptions to this rule—for example, pregnancy can distort the TSH test results, as can serious medical illness. In these circumstances, the doctor may wish to perform a second TSH test before placing the person on thyroid medication. At the other end of the TSH scale, some people are hyperthyroid (with excessively high levels of circulating thyroid hormone). These individuals may exhibit nervous and agitated behavior and usually do not complain of fatigue.
Doctors will want to determine why the patient is hypothyroid. The reasons may be related to normal aging rather than to any existing active disease. Most practitioners can readily make this diagnosis and undertake long-term management, but they may look for input from an endocrinologist along the way.
Individuals who are hypothyroid usually respond well to thyroid hormone supplementation, although it may take several weeks to a month before noticeable improvements occur. Clinicians usually start on a low dosage of thyroid medication and gradually increase the dosage based on serial TSH values. This is similar to the way many medications are prescribed. Start low and go slowly.
Fibromyalgia
Fibromyalgia is a common disorder, and understandably, CFS and fibromyalgia are often lumped together. Officially, CFS and fibromyalgia are classified as distinct conditions, yet they share many characteristics. Chronic fatigue is the primary complaint of the CFS patient, whereas pain and stiffness throughout the body characterize fibromyalgia, often affecting the upper neck and back to the greatest extent. As with CFS, people with fibromyalgia often suffer from fatigue and brain fog, but the primary symptom is pain. Complicating the issue further, it is common for a patient to have both CFS and fibromyalgia.
About 4 million adults in the United States have fibromyalgia, and the risk increases with aging. Women are at twice the risk for fibromyalgia compared to men. In addition, people who have had lupus or rheumatoid arthritis have an elevated risk for developing fibromyalgia.2
People with fibromyalgia may have difficulty with concentration, memory, and thinking (brain fog), and they may suffer from headaches and sleep problems. Most people with fibromyalgia are diagnosed in their middle age (in their 40s or 50s), although people of any age may be affected by these debilitating symptoms.3 There are two other distinctions between the two conditions. First, some research supports that physical exercise is helpful for fibromyalgia but may make CFS worse. Second, the FDA has approved several medications to treat fibromyalgia. Pregabalin (Lyrica), duloxetine (Cymbalta), and milnacipran (Savella) all have adequate data studies showing their usefulness for fibromyalgia symptoms. These medications help with certain types of fibromyalgia pain, specifically neuropathy (nerve tingling), and sometimes muscle aching. It is important to note that they do not significantly help with the brain fog, other impairing cognitive symptoms common to fibromyalgia, or CFS. Although this book will explore the utility of stimulant medication for CFS, the FDA has not yet approved any specific stimulant medications for the condition.
Lyme Disease
Every year campers in certain regions of the country are bitten by the tick hosting the Borrelia burgdorferi bacterium. This infection can cause Lyme disease, a disorder first identified in Lyme, Connecticut. The tick must remain attached to the person for 36–48 hours to cause infection.4 At least 30,000 people per year have been infected in the United States, and that number may be 10 times greater, according to the CDC.5 The Lyme tick is heavily concentrated in the northeastern part of the United States, but people in other parts of the country are infected as well. You can review a map of where the Lyme disease has been identified at this site: https://www.cdc.gov/lyme/datasurveillance/index.html.
The acute symptoms of Lyme disease include fatigue, fever, chills, headache, muscle and joint pain, and swollen lymph nodes. Up to 80 percent of infected people have a rash that looks like a bullseye target, which appears about seven days after the tick bite. The rash may present anywhere on the body.6
When Lyme disease is diagnosed in the early stages, the infection can be treated with antibiotics such as doxycycline, amoxicillin, both generic drugs, or cefuroxime (Ceftin). Treatment may last from 10 days to up to three weeks. Most people recover with treatment, but some people develop fatigue and muscle pain that can extend for up to six months.
A more controversial issue is post-treatment Lyme disease syndrome (PTLDS).7 This diagnosis recognizes patients who have chronic fatigue years after a tick bite. Not all infectious disease doctors agree that the Borrelia bacterium can cause long-standing symptoms, and they doubt that it is a valid explanation for chronic fatigue.
In 2012, our team surveyed patients at the Michigan Lyme Disease Conference who self-identified as having PTLDS. A total of 58 adults with PTLDS and a control group of 26 without the condition participated. Surprisingly, most patients surveyed had no recollection of having had an initial tick bite or any acute symptoms. We also found high levels of psychiatric symptoms in the form of anxiety, depression, and ADHD in this group. Of these conditions, depression and ADHD in adults are associated with chronic fatigue. CFS, a condition I have linked to ADHD, may be a better explanation than Lyme disease for the surveyed patients, since it is impossible to have Lyme disease without a history of a tick bite. Additionally, in my clinical experience, the doctors of patients with chronic fatigue migrate to diagnoses that explain the chronic fatigue symptoms via a physical diagnosis such as a post-infectious syndrome.8, 9
Diabetes
Patients with diabetes often report feeling fatigued. A diabetic patient told me, “It’s like my brain is not working at peak efficiency.” Diabetes is a serious disorder of chronically high levels of blood sugar. Often the condition starts in childhood, and patients with insulin-dependent diabetes (type 1 diabetes) must inject themselves with insulin to avoid diabetic ketoacidosis, coma, and death. Type 2 diabetes has a later onset and is often associated with excessive weight. In these cases, insulin may not be needed. A surprising number of people with type 2 diabetes are undiagnosed, which is a tragedy because so many good treatments are available. Patients with type 2 diabetes require careful monitoring of blood sugar levels. Lifestyle changes and medications can extend the quality and duration of life. However, if untreated and/or uncontrolled, there are numerous possible and unpleasant complications, including eye and kidney disease.
A simple finger-prick test may indicate diabetes, but doctors cannot diagnose the disease without a laboratory test known as the HA1c, which reflects blood sugar blood levels for the past three months based on a fasting blood test.
People who are middle-aged and older in their 50s and older and who are overweight or obese are most likely to have type 2 diabetes, although sometimes people with low body mass index (BMI) develop diabetes. Undiagnosed people with diabetes may feel fatigued and constantly thirsty and may need to urinate frequently. Individuals diagnosed with diabetes learn how to control their blood sugar levels with testing. Fortunately, finger-prick tests are becoming obsolete because implantable devices are increasingly available. While type 2 diabetes is distinguishable from CFS, the two are not mutually exclusive conditions. CFS can exist independently along with type 2 diabetes, and CFS should be suspected if fatigue and brain fog continue despite optimal diabetic management.
Multiple Sclerosis
Multiple sclerosis (MS) is a serious chronic inflammatory and neurodegenerative disease characterized by vision loss, pain, fatigue, and impaired coordination. About 400,000 people in the United States have MS.10 Most (85 percent) MS patients have a relapsing-remitting disease, characterized by feeling worse, then feeling better, then feeling worse again.11
MS is more common in women than in men and largely affects white people. In a study of MS in Texas, Missouri, and Ohio, the highest prevalence of MS was found in Ohio, largely among non-Hispanic whites. In another study of more than 24,000 people with MS, the prevalence of the disease was highest among women ages 35–48 and among men ages 40–54. In this study, the prevalence was about three times higher among women than men. The researchers reported the prevalence was higher in the East Census area, which included New England and the Middle Atlantic states, than in other areas of the country.12
The most common MS symptom is fatigue, and it presents in up to 80 percent of all affected people. According to the National Multiple Sclerosis Society, MS fatigue can significantly interfere with the person’s daily work and other responsibilities. Occupational therapy and physical therapy (PT) may help to combat the fatigue, as may sleep regulation, stress management, and relaxation training.13 The wakefulness-promoting drug modafinil is often used for MS fatigue. I have found that several of my patients with long-standing MS were misdiagnosed. Inevitably, these patients were diagnosed in an earlier era using indirect diagnostic techniques. In recent years, brain imaging has become more precise, and this diagnostic error occurs less often. It remains good practice to consider MS when a patient presents with fatigue. If, over time, MS symptoms do not progress as might be expected, it is prudent to consider alternative explanations for chronic fatigue, including CFS.
Comparing Well-Being of People with MS and CFS
Most people consider multiple sclerosis (MS) to be a very serious disease—and it is. Yet in a study in the United Kingdom that compared the well-being of patients with MS to those with CFS, the researchers found that the CFS patients were significantly worse off in many respects. This study compared 52 subjects with CFS, 52 with MS, and a third group of healthy controls. The subjects had an average age of 49 years.1
The researchers found that 89 percent of the CFS subjects were employed before their illness, but this percentage fell to 35 percent after the onset of the illness. By the time of the study, however, only 13 percent of the CFS subjects were working. In contrast, 93 percent of the subjects with MS worked before their illness, and 60 percent worked after their illness onset. At the time of the study, 37 percent of the MS patients were working. The researchers also found that MS subjects had higher earnings than the CFS subjects. Clearly, the MS subjects, although impeded by their illness, were more able to work than the CFS subjects. The authors poignantly noted that some CFS subjects were only able to continue working “by sacrificing all or much of the social life they would otherwise enjoy.”2
Notes
1.Caroline C. Kingdon, et al., “Functional Status and Well-Being in People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Compared with People with Multiple Sclerosis and Healthy Controls,” PharmacoEconomics Open 2 (2018): 381–392.
2.Ibid., page 389.
Iron Deficiency Anemia
Individuals with iron deficiency anemia report fatigue and an inability to think clearly. The extent of these symptoms depends on the severity of the anemia. About 10 percent of women of childbearing age in the United States have iron deficiency anemia, primarily from loss of blood with menstruation. Iron-deficiency anemia constitutes about half of all anemias.14 This disease is diagnosed with a complete blood count (CBC), and patients who have iron-deficiency anemia are treated with iron supplements and other medications.
Common symptoms of iron-deficiency anemia include severe fatigue, pallor, shortness of breath (dyspnea), and the inability to work. Patients who are deficient in iron are given iron supplementation for at least three months.15
Other Vitamin and Mineral Deficiencies
Severe fatigue and low energy may be caused by deficiencies in vitamin B12 and by insufficient blood levels of magnesium.
Vitamin B12 Deficiencies
Cobalamin, also known as vitamin B12, is a common blood deficiency and causes fatigue and pallor. Males and females ages 14 years and older need 2.4 mcg of vitamin B12 daily, although pregnant females need 2.6 mcg, and breastfeeding females need 2.8 mcg daily. Vitamin B12 is found in many foods, such as poultry, fish, meat, and dairy products. A B12 deficiency may be treated with injections or oral dosages of this vitamin. Strict vegetarians have an elevated risk for a B12 deficiency, and some drugs may interfere with B12 availability, such as proton pump inhibitors for heartburn, metformin for diabetes, and other drugs.16
B12 deficiencies are especially common among people of Northern European ancestry and among older people.17 It is treated orally or with injections. The method of treatment depend on the severity of the B12 deficiency and the patient’s anatomy.
Patients with fatigue due to a vitamin B12 deficiency have a readily addressable medical finding. The medical workup for fatigue should include this simple screening blood test. If supplementation with vitamin B12 does not reverse the fatigue, then CFS should be considered as an alternative explanation.
Low Levels of Magnesium
Fatigue and lack of appetite are early signs of a magnesium deficiency, and if the condition worsens, the person may experience numbness, tingling, and even seizures; abnormal heart rhythms; and muscle contractions and cramps. Those at the highest risk for low levels of magnesium are alcoholics, people with type 2 diabetes, and older adults.18 Magnesium levels in the blood are easily tested. The doctor may prescribe oral magnesium supplements or, if the condition is severe, she may administer the magnesium intravenously. The average male in the United States ages 31 years and older needs 420 mg of magnesium daily, and the average female of this age needs 320 mg, although pregnant women ages 31–50 need 360 mg daily.19 It is gratifying for doctors to detect magnesium deficiencies because patients benefit from this simple treatment. If the patient shows little response, do not forget to consider that the true diagnosis may be CFS.
Zeroing In on CFS as the Diagnosis
Having ruled out the full possible array of other diseases, the doctor should consider CFS. The Institute of Medicine for CFS revised the criteria for CFS in 2015:
1.A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest,
2.Post-exertional malaise,* and
3.Unrefreshing sleep.
At least one of the two following manifestations is also required:
1.Cognitive impairment* or
2.Orthostatic intolerance.
*Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.20
Considering Possible Criteria of CFS
There are five criteria for diagnosing CFS after ruling out other possible disorders, and I discuss each of these criteria in the next sections. In addition, because so many patients with CFS report difficulty with chronic pain, I include a section on this symptom.
Impairments in Social, Educational, Occupational, or Personal Activities
Like all mental health professionals, psychiatrists are accustomed to talking about sensitive issues, past and present, and understanding patients’ concerns about troubling aspects of their lives.
To obtain the CFS diagnosis, the patient must have had severe functional impairment at work, at home, at school, or in interpersonal activities for at least six months. Here are some questions that I designed to elicit such information from patients.
1.How well do you think you are doing at work now compared to a year ago? Five years ago?
2.Does it feel like anything is holding you back from performing as well at work as you did in the past? If so, in what ways?
3.Is fatigue a factor in your lower work performance?
4.On a scale of 1 to 10, with 1 being mild and 10 being the most severe, what number would you assign your work performance now?
Post-Exertional Malaise
Postexertional malaise (PEM), a key feature of CFS, describes the severe fatigue and exhaustion that people affected with CFS experience after performing tasks. On some days, tasks as simple as walking the dog or even wiping the kitchen counter can cause this symptom. PEM is diagnosed if an individual regularly overreacts to a mundane exertion. Margot, age 42, has CFS and no other medical condition. One sunny and mild day, Margot’s husband encouraged her to join him for a walk in their neighborhood. When she returned 20 minutes later, she fell into a deep sleep in her chair for two hours. “My husband told me that he took my pulse while I was asleep—to make sure I still had a pulse!” Margot represents a subgroup of CFS patients who function worse after exercise. For this group, only mild exercise (if any) is recommended.
An event that the individual views as stressful can prompt PEM. As an example, Margot relates that she was mentally and physically exhausted after her eight-year-old child’s birthday party. Patients with PEM report that they frequently feel overwhelmed after an event that other people handle in stride. This leads to feelings of fragility and can be a source of contention for family members. Margot lamented, “My husband had to take charge of the party. I am always crashing, and I always feel that I let everyone down.”
Many other medical conditions are characterized by fatigue after physical activity; this is the hallmark of various cardiovascular and lung diseases. Doctors don’t want to misdiagnose a patient whose post-exertional fatigue is better explained by aortic valve disease or pulmonary fibrosis. The difference is that Margot’s fatigue was triggered by mild physical exertion and a routine event such as hosting a child’s birthday party. In this way, PEM differs from exercise-induced fatigue.
Postexertional Malaise Is Common with CFS
In a study of 145 people with CFS, researchers found that 90 percent of them experienced postexertional malaise (PEM), not only with physical exercise but also with emotional distress and cognitive exertion (typically worrying about a situation). Eighty-four percent of those with PEM said that this symptom lasted at least 24 hours. Some (11%) said there was about a 24-hour delay between the trigger and the onset of the PEM. Only 9 percent said that the PEM symptoms abated within 24 hours.1
In most patients who fatigue with exercise, symptoms begin during the exercise and end soon after exertion stops. This contrasts to the CFS subjects where PEM starts hours or even days after the provocative trigger. In these cases the PEM may last for days, weeks, or even months. Thus, with most subjects, if they feel worse with exertion or emotional distress, they suspend their exercise or remove themselves from the stressful event. People with CFS don’t feel worse until much later when the experience is well over, and consequently, they may not make the association between the trigger and the later-occurring PEM symptoms. It is useful for people experiencing PEM symptoms to recollect what they were doing on the day and week before these symptoms took hold. Keeping a diary is a helpful way to identify triggers.
Note
1.Lily Chu, et al., “Deconstructing Post-Exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Patient-Centered, Cross-Sectional Survey,” PLOS One (June 1, 2018), https://doi.org/10.1371/journal.pone.0197811 (accessed December 31, 2018).
Unrefreshing Sleep
Another key symptom of CFS is the lack of feeling refreshed after extended sleep. The common problem of nonrestorative sleep is worsened if the patient has trouble falling asleep. Many CFS sufferers report waking up feeling completely unrefreshed after eight–nine hours of sleep. Sleep, a deceivingly complex process of biological renewal, is the key means by which the body repairs itself physically and emotionally and is fundamental to the life process. The combination of insomnia and unrefreshing sleep directly impedes quality of life in patients with CFS.
In the study alluded to earlier by Jain Vageesh, 55 percent of the ME/CFS subjects said they had severe and unrefreshed sleep issues.21 Many people with CFS have initial insomnia and spend hours trying to fall asleep. Others experience late-night insomnia or awakening before their morning alarms go off. Patients with these problems are also likely to report a diagnosis of obstructive sleep apnea (OSA), a disorder that causes temporary lapses in breathing while asleep. Established treatments for OSA include a continuous positive airway pressure (CPAP) device, a cumbersome bedside device that pumps air into the lung.
Although doctors often order sleep studies for CFS patients, in my experience, the yield is low. In most patients with CFS, sleep studies are negative for OSA. In addition, when using CPAP, many patients have trouble tolerating the inconvenience of sleeping with a face mask. After the long and expensive process of a sleep disorder workup, CFS patients are often left frustrated and with no clear answers.
CFS patients who have insomnia may benefit from cognitive behavioral therapy (CBT) focused on how to develop set sleep routines and to defeat long-standing beliefs that they will never sleep well. At times, sleep-inducing medications are useful, and CFS patients appreciate that their time in bed is spent sleeping rather than rolling around. Unfortunately for many folks with CFS, more hours of sleep do not translate into less daytime fatigue or improved daytime functioning. CFS is more dimensional and extensive than OSA, and the goals of treatment need to include and exceed improving sleep duration and quality. (Chapter 10 expands on the role of sleep in CFS.)
It is essential to understand each individual’s specific sleep struggles. The following questions allow the doctor to fully characterize the CFS patient’s experience:
1.About how many hours do you sleep at night?
2.Do you have trouble getting to sleep?
3.Do you wake up more than once at night?
4.When you wake up after sleeping at least eight hours, how do you feel, on a scale of 1 to 10, with one being very fatigued and 10 being completely refreshed?
Cognitive Impairment
Cognitive difficulty, also known as brain fog, is another common problem for people with CFS. Patients with brain fog report having regular short-term memory deficits that involve missing an exit while driving on the highway or misplacing their car keys or their wallet. In conversations, they are embarrassed because they forget the names of people they just met and can’t access the right words at the proper time. In a study in the United Kingdom of 237 adults with CFS, nearly all subjects reported “trouble concentrating,” which was also the most common symptom.22
Other cognitive symptoms are difficulty expressing thoughts and slowed thinking. Spouses may lose patience with this absentmindedness and frequently lament that their partners are not listening or staying present in daily conversations. And they’re right. Later chapters will provide more information on brain fog.
The following questions can clarify the extent of an individual’s cognitive impairment. Keep in mind that most people are overly harsh in their self-assessments and may not accurately remember their earlier effectiveness. These questions are useful only for individuals with mild cognitive impairment and will not yield helpful information when asked to compromised patients with moderate to advanced dementia or Alzheimer’s disease. The answers to these questions are more meaningful coming from both the patient and, independently, from their partner or other person who knows the patient well.
1.Do you think you can concentrate as well now as you did in the recent past, such as last year or the year before that? If not, give me an example of better concentration then as compared to now.
2.Are you as good now at making plans and carrying them out as you were in the past? Please explain.
3.If for some reason you had to plan a party or other event, could you do it now? Why or why not?
Other cognitive findings include impaired executive functioning. Individuals with brain fog have trouble planning, sequencing their plans, and motivating themselves to start projects that seem onerous, or they may start projects but not finish them. They might have bursts of curiosity but find it challenging to sustain interest in new things.
Orthostatic Intolerance
Orthostatic intolerance has been associated with CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis—another name for CFS). A common symptom is feeling faint and dizzy when standing up from a sitting position. Normally, blood pressure rises when people stand, but for those with orthostatic intolerance, blood pressure drops and heart rate increases. Some people with orthostatic intolerance experience blurry vision and see spots in front of their eyes.23
In my experience, orthostatic intolerance is a relatively minor finding in a small number of CFS patients. However, there is room for scientific exploration. At a recent National Institute of Health Conference, it was reported that in patients with CFS, prolonged upright posture cause both blood pressure and pulse rates to fluctuate, resulting in an inconsistent blood flow to the brains of CFS patients. The question that emerges from this finding is whether chronic fatigue may result from impaired blood circulation.24
The physician should check blood pressure, pulse, and heart rhythm, considering other possible major problems related to heart and vascular disease. In my experience, however, most CFS patients experience these sensations not as the result of fluctuating blood pressure but rather due to their feelings of anxiety and panic. These anxiety symptoms commonly occur with CFS. I discuss other common psychiatric conditions and CFS symptoms in Chapter 4.
A Cautious Word about Orthostatic Intolerance/Postural Tachycardia Syndrome (POTS): What Are They?
Orthostatic intolerance, also known as orthostatic hypotension, has been associated with chronic fatigue syndrome, although this condition is not mandatory for a diagnosis of CFS. Orthostatic hypotension is identified when a person becomes dizzy or even passes out when shifting positions. It happens when a person, usually someone who is older, sits up or stands up too quickly. Usually, upon repositioning, the heart should beat faster, and the arteries carrying blood should constrict to move the blood against gravity into the brain. However, with orthostatic hypotension, faintness occurs when the body cannot quickly and sufficiently accommodate to the new physical position. Though everyone has experienced this sensation on occasion, another related condition, postural tachycardia syndrome (POTS) is diagnosed when this drop in the blood pressure happens repeatedly. Patients with dysautonomia, a dysregulation of the autonomic nervous system, may present with POTS. I have several patients in my practice with POTS who have benefited from medications that control blood pressure or add volume to the blood system.
I have also had patients who have been told that POTS explains their chronic fatigue and brain fog. I believe that this is an inaccurate cause-and-effect explanation, and for that reason, I raise it here. It never made sense to me that this occasional interruption of blood pressure could cause a long-standing effect like brain fog or chronic fatigue. Defenders of the POTS/CFS connection assert that the lower passage of blood through the brain explains chronic fatigue. Linking the conditions appears to be rational but is misleading. Although I have patients whose blood pressure has stabilized on conventional POTS treatments, I have never treated anyone who reported less brain fog subsequent to treatment. Whenever my patients receive the diagnosis of POTS, I usually can find other more feasible explanations for their brain fog and chronic fatigue. Chapters 3 and 4 provide a full discussion into other physical and psychological conditions that mimic CFS and are confused with it.
Chronic Pain
Sadly, most people with CFS report suffering from one or more types of chronic pain. The pain may include muscle aches, headaches, joint pain, and abdominal pain. In addition, the person with CFS may have a chronic sore throat and enlarged and tender lymph nodes. Some female patients with CFS are acutely sensitive to menstrual pain, while others experience pain during intercourse. Men predisposed to pain sensitivity often report constant ear ringing (tinnitus). Added to the burden of enduring these symptoms is that there are often no physical findings. If a broken bone appears in an X-ray or an abscess is red and ugly, no physician doubts the accompanying pain complaints. Conversely, the physical complaint in CFS cannot be visualized, and this frustrates doctors and patients alike. Read more about resolving chronic pain in Chapter 8.
Avoid Opioids for Chronic Pain
It is my clinical experience that CFS individuals treated with stimulant medications experience less pain, and later in the book, I discuss a published clinical trial that supports this observation. Although most of this book offers patients ideas for how to approach their CFS though medication options and lifestyle changes, it is equally important to outline what not to do. Using narcotics (fentanyl, oxycodone, hydrocodone, and so forth) for CFS is misguided and dangerous. Even a brief exposure to opiates can cause tolerance and dependency.
Whereas the first few doses of opioids may relieve pain, ongoing use of opioids makes most CFS patients feel more tired and less mentally aware. Narcotics are not appropriate for most chronic pain conditions, as they are associated with undesirable side effects such as weight gain, temperature intolerance, and constipation. Opioid overdose, a risk that is amplified when combined with other centrally acting medications such as benzodiazepine (Xanax, Klonopin, etc.), is responsible for a great number of deaths every year in our country. Opioids play a vital role in the aftermath of painful surgery and should be available to people with terminal cancer pain, but by every other account, they are the wrong medications for CFS.
Some experts have found that the pain of the person with CFS is significantly greater and/or longer lasting than the pain of healthy individuals who do not have CFS. Severe contrasts emerged in one study of subjects with recently reported pain when comparing subjects with CFS to healthy controls. The researchers found that 73 percent of the CFS patients had muscle pain compared to only 10 percent of the controls, and 64 percent had joint pain compared to 12 percent of controls. (See Table 2.1 for more details.) There are promising means to combat these symptoms, and I discuss these in the treatment chapters, or Chapters 7–10.
After the age of 50 years or so, chronic pain may become a new issue, such as the chronic pain of osteoarthritis, back pain, neck pain, headaches, and so forth. Many people with CFS say that some type of chronic pain is a constant issue in their lives as well. This problem occurs so frequently that, in addition to my individual chapters covering how to cope with chronic fatigue, improve sleep, and manage brain fog (cognitive difficulties), I am including a chapter on dealing with chronic pain. Here are a few simple questions about chronic pain that your doctor may ask you:
1.Do you experience any type of frequent or chronic pain? If so, please describe it.
2.When did this type of pain begin, if you know?
3.On a scale of 1 to 10, with 1 being very mild and 10 being extremely severe, what is the most common rating you would assign to your pain level?
4.What have you done to deal with this pain in the past?
Table 2.1 Comparing Types of Pain of CFS Patients with Non-CFS Patients, by Percentage
|
CFS Subjects |
Healthy Subjects |
Muscle Pain |
73 percent |
10 percent |
Joint Pain |
64 percent |
12 percent |
Headaches |
50 percent |
7 percent |
Tender Lymph Nodes |
44 percent |
0 percent |
Sore Throats |
37 percent |
1 percent |
Source: Leonard A. Jason, et al., “Examining Case Definition Criteria for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis,” Fatigue 2, no. 1 (January 2014): 40–56. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3912876/pdf/nihms539096.pdf (accessed July 12, 2019).
This chapter explored the CFS diagnosis and the need to consider other medical problems that might explain fatigue symptoms. It also covered the key features of CFS and explained its primary symptoms, including chronic fatigue (of course). It also introduced other components of CFS, including chronic pain, orthostatic intolerance, and cognitive impairment, commonly referred to as brain fog. The next chapter covers various competing theories regarding the reasons for development of CFS.
Notes
1.James Norman, “Hypothyroidism: Overview, Causes, and Symptoms,” Endocrineweb, November 27, 2018, https://www.endocrineweb.com/conditions/thyroid/hypothyroidism-too-little-thyroid-hormone (accessed December 28, 2018).
2.Centers for Disease Control and Prevention, “Fibromyalgia,” n.d., https://www.cdc.gov/arthritis/basics/fibromyalgia.htm (accessed December 28, 2018).
3.Ibid.
4.National Center for Complementary and Integrative Health, “Lyme Disease,” March 2019, https://www.nccih.nih.gov/health/lyme-disease (accessed April 17, 2020).
5.Centers for Disease Control and Prevention, “Data and Surveillance,” November 2, 2018, https://www.cdc.gov/lyme/datasurveillance/index.html (accessed December 18, 2018).
6.Centers for Disease Control and Prevention, “Signs and Symptoms of Untreated Lyme Disease,” October 26, 2016, https://www.cdc.gov/lyme/signs_symptoms/index.html (accessed December 17, 2018).
7.Centers for Disease Control and Prevention, “Treatment,” December 1, 2017, https://www.cdc.gov/lyme/treatment/index.html (accessed December 17, 2018).
8.Joel Young, “ADHD Is Notable Characteristic of Patients Suffering from Chronic Lyme Disease: A Survey of Adults at the Michigan Lyme Disease Association Conference,” May 4, 2012, American Psychiatric Association Annual Meeting, Philadelphia, PA, NRD-30, page 212, https://borderlinepersonalitydisorder.org/wp-content/uploads/2012/04/2012_apa_program_guide1.pdf (accessed May 5, 2019).
9.Megan Brooks, “Chronic Lyme Disease Linked to ADHD in Adults,” Medscape Diabetes & Endocrinology, May 8, 2012, https://www.medscape.com/viewarticle/763458 (accessed July 12, 2019).
10.Piyameth Dilokthornsakul, et al., “Multiple Sclerosis Prevalence in the United States Commercially Insured Population,” Neurology 86 (March 15, 2016):1014–1021.
11.Curtis W. Noonan, et al., “The Prevalence of Multiple Sclerosis in 3 US Communities,” Preventing Chronic Disease 7, n. 1 (January 2010), https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2811507/ (accessed December 28, 2018).
12.Piyameth Dilokthornsakul, et al., “Multiple Sclerosis Prevalence in the United States Commercially Insured Population,” Neurology 86 (March 15, 2016): 1014–1021.
13.National Multiple Sclerosis Society, “Fatigue,” n.d., https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Fatigue (accessed December 17, 2018).
14.M.J. Warner and Kamran, M.T., “Anemia, Iron Deficiency,” December 16, 2019, https://www.ncbi.nlm.nih.gov/books/NBK448065/ (accessed March 30, 2020).
15.Ibid.
16.National Institutes of Health, Office of Dietary Supplements, “Vitamin B12: Fact Sheet for Health Professionals,” November 29, 2018, https://ods.od.nih.gov/factsheets/vitaminb12-HealthProfessional/ (accessed December 17, 2018).
17.Alex Ankar and Kumar, Anil, “Vitamin B12 Deficiency (Cobalamin),” October 27, 2018, https://www.ncbi.nlm.nih.gov/books/NBK441923/ (accessed December 28, 2018).
18.National Institutes of Health, “Magnesium,” September 26, 2018, https://ods.od.nih.gov/factsheets/magnesium-HealthProfessional/ (accessed December 26, 2019).
19.Ibid.
20.Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations, Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: National Academies Press, 2015.
21.Vageesh Jain, et al. “Prevalence of and Risk Factors for Severe Cognitive and Sleep Symptoms in ME/CFS and MS,” BMC Neurology 17 (2017), https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-017-0896-0 (accessed February 2, 2018).
22.Ibid.
23.Centers for Disease Control and Prevention, “Primary Symptoms,” n.d., https://www.cdc.gov.me-cfs/symptoms-diagnosis/symptoms.html (accessed December 31, 2018).
24.van Campen, C.M.C., Rowe, P.C., and Visser, F.C., “Blood Volume Status in ME/CFA Correlates with Presence or Absence of Orthostatic Symptoms: Preliminary Results.” Frontiers in Pediatrics 6 (November 15, 2018), https://www.frontiersin.org/articles/10.3389/fped.2018.00352/full (accessed March 16, 2020).