Chapter 3
Problems and Complications

While there are certain prominent symptoms of chronic fatigue syndrome (CFS) that help a doctor make the diagnosis, CFS patients often experience many problems beyond these symptoms. These problems are varied and can include further physical health complications and also emotional and practical difficulties that accompany the lifestyle changes people with CFS are often forced to make.

Possible Health Complications

The most debilitating symptoms of CFS are often not among the first to appear. After the initial period of fatigue, pain, headaches, and flu-like symptoms, numerous further complications can develop, the most devastating being the potentially severe cognitive impairments. According to Erica F. Verrillo and Lauren M. Gellman, "Loss of concentration is one of the most common—and serious—cognitive problems affecting people with [CFS].… The brain lags and either processes new information slowly or misses it entirely."²³

Everyday activities become burdensome. People with CFS often lose the ability to keep up with a conversation because they have extreme trouble focusing on what the other person is saying and processing the meaning of the words. Reading becomes a slow, laborious process because a patient might have to read one sentence many times in order to really grasp its meaning. "I couldn't concentrate to read, and when I did, the words leaped all over the page," Hillary Johnson says of her worst days. "I was unable to hold a conversation with more than one person. When I spoke, I often used words entirely inappropriate to the meaning of my sentence; I forgot my subject in midstream. I also forgot the names of friends, common household words and the names of schools I had attended."²⁴ Driving even on short errands may be risky; a CFS sufferer might not stop at a red light in time because it can take too long to respond to the signal by moving one's foot from the accelerator to the brake pedal.

Not only do CFS patients have trouble processing information, they also have problems retaining it. Memory loss, particularly short-term memory loss, is another common cognitive complication of CFS. Patients often describe forgetting people's names or the words for various common objects. They frequently have trouble remembering what they were just doing or were about to do, and why. Multitasking—that is, the handling of more than one task at once—becomes a real challenge because CFS limits one's ability to focus on even one task. Daily chores requiring basic math skills, such as balancing a checkbook, often become so demanding that a person with CFS can no longer complete them without assistance.

The possible neurological symptoms and complications extend beyond cognitive function and also involve motor skills and balance. Recalls John (who asked that his last name not be used) of the early day of his illness, "When I tried to stand up, my legs felt like rubber. My head pounded and I was dizzy and nauseous."²⁵ Patients often experience dizziness and even fainting spells, a ringing in their ears, and paresthesias, a condition involving numbness, shooting pains, or a burning, tingling sensation in the extremities. "Some patients have burning sensations in the fingers to the degree that they are unable to hold a pencil,"²⁶ Dr. David S. Bell relates. In rare cases, seizures or seizure-like episodes can occur.

These neurological problems are often worsened by accompanying problems with vision. People with CFS sometimes have a high sensitivity to light, meaning that normal levels of indoor lighting or sunlight outdoors appear much brighter, becoming nearly blinding and sometimes causing pain. They also report blind spots, blurred vision, and dryness, burning, and pain in their eyes, or even "floaters," meaning black spots that seem to float in front of their eyes.

Virtually every organ is affected by CFS. Dry skin is another frequent problem, along with other skin conditions such as rashes, eczema, redness, and thinning of hair. Sometimes CFS patients actually lose clearly defined fingerprints, due to atrophy of the skin on their fingertips.

Pain remains a central reality for sufferers of CFS as the disease progresses, although it sometimes develops in new areas of the body. For instance, people with CFS sometimes begin to feel pain and a burning sensation when they urinate, along with feeling the need to urinate more frequently. Though these can be symptoms of a bladder infection, most often the patient with CFS who experiences these problems does not actually have an infection, so there is no quick treatment to ease symptoms. Sometimes, the problem becomes chronic, developing into a condition called interstitial cystitis. In these cases, patients must experiment with methods to manage the pain such as over-the-counter pain relievers and certain prescription drugs.

Women, who suffer disproportionately higher from CFS than men, often face an increase in premenstrual pain; their CFS symptoms in general also tend to worsen during menstruation. In addition, CFS sufferers seem to be at a higher risk of first-trimester miscarriages than the rest of the population.

Certain cardiovascular problems appear to affect both men and women with CFS more frequently than the general population. Increased heart rate, palpitations, and a faint murmur attributed to the common and fairly minor condition called mitral valve prolapse are all problems that doctors see with greater frequency among CFS patients than in the population at large. More serious cardiac complications are rare but have been seen, and many doctors report an apparently low blood volume, a potentially major complication, in CFS patients.

Associated Diseases

Of course, being diagnosed with an illness such as CFS does not preclude the possibility of developing some other illness. In fact, sometimes even the opposite can be true: Having certain conditions can make someone more likely to develop other specific diseases. When this happens, the diseases are called "associated diseases." And there are several conditions that appear to be associated with CFS.

Most common of the associated conditions is allergies. The majority of people diagnosed with CFS either experience a worsening of existing allergies or develop new ones. "Many patients who had childhood allergies and were free of them for years develop allergies again when they become ill with CFIDS," Bell observes. "And some patients who have never had allergies at all will develop them after becoming ill."²⁷ Since allergies result from an immune system that is responding inappropriately to substances that are usually harmless, such as pollen or peanuts, some doctors wonder if the association between CFS and allergies points to the role of a faulty, overactive immune system in CFS. However, this question has yet to be answered.

While many experts remain intrigued by the association with allergies, researchers tend to focus most on understanding the exact relationship between CFS and a second associated condition: fibromyalgia, a disease for which there is also no known cause or cure, and which shares many symptoms and complications with CFS. The primary difference between the two disorders is that while CFS was named for its hallmark symptom of extreme fatigue, the predominant symptom of fibromyalgia is not exhaustion but pain throughout the whole body, particularly in certain areas of the body called "tender spots." Some experts speculate that CFS and fibromyalgia are variations of the same illness; indeed, most books available on either disease address both conditions together. Treatment manuals, in particular, do so since the treatments that have been successful for symptoms of CFS are also given to patients with fibromyalgia. "[CFS and fibromyalgia] share the same common symptoms, demographics, sleep physiology, and abnormalities in neurological, immune system, and endocrine function,"²⁸ Katrina Berne writes. A difficulty in achieving deep, restorative sleep appears to lie at the heart of both illnesses, and patients with either or both diseases report the same strange sensitivities to light, sound, and changes in temperature, along with experiencing a similar range of cognitive, cardiac, gastrointestinal, skin, bladder, and other problems.

Despite these overlaps between CFS and fibromyalgia, there are some key differences that lead to a diagnosis of one or the other, and that can even lead to someone being diagnosed with both. The first difference, of course, is in the predominant symptoms of fatigue and pain, respectively. Also, although many of the symptoms are shared, the severity of certain symptoms seems to distinguish the two diseases. Doctors who study the type of pain caused by fibromyalgia are called rheumatologists, and it was the American College of Rheumatology that established the criteria for a diagnosis of fibromyalgia, released in 1990. To receive the diagnosis, a patient must report having experienced widespread chronic pain for at least three months, and, most importantly, must experience pain when pressure is applied to at least eleven of the eighteen areas of the body identified as tender points by rheumatologists.

Just how fibromyalgia is connected to CFS is still a subject of debate. In the meantime, however, many patients with CFS must also cope with the more severe pain of fibromyalgia and adjust their treatments and lifestyles accordingly.

The Role of Depression

If the connection between CFS and fibromyalgia is complex, still more complicated is the relationship between CFS and depression. People with CFS often express various emotions related to depression, including despair, hopelessness, and helplessness. They may lose interest in things that once brought them pleasure or withdraw from people around them. The high rate of depression among CFS patients, combined with the inability to pinpoint an organic cause for the disease, has led various researchers to suggest that CFS is in fact a symptom of depression.

Such a relationship is at least plausible, since it is not unheard of for severe emotional problems to cause physical symptoms. Experts, however, widely reject this theory for several reasons. For one thing, the depression experienced by CFS patients occurs after onset of their physical symptoms, not before. For this reason, depression is widely believed to be a symptom or complication, rather than a cause, of CFS. "The symptoms of primary depression are quite dissimilar to the symptoms of CFIDS patients," Bell explains. "While up to 60 percent of [CFS] patients are depressed, 40 percent are not, or have only minimal depression expected from the life disruption they experience. Emotionally healthy children develop CFIDS and have less depression than adults in the first few years of the illness. And … if CFIDS is a mental illness, why does it occur in epidemics?"²⁹

Those who believe that depression is not a cause of CFS offer multiple explanations for the high number of CFS patients who suffer from depression. The first is simple: Being sick in itself can be depressing. In support of this, Hillary Johnson describes her initial period of illness the following way: "I felt as if I had tumbled into a deep, dark hole and was spinning, head over heels, into blackness."³⁰ Depression commonly accompanies chronic illness of all types, experts argue. And some ask rhetorically whether a cancer patient would be told he or she did not have cancer just because he or she was also depressed, or if he or she would be told that the cancer was caused by depression.

The source of the depression, most experts say, is clear. Beyond the frustration over being physically ill, people with CFS often experience difficulty accepting limitations that they feel define them in the eyes of their peers. Although no direct causal link has been established, research does indicate that a large portion of adult CFS patients were once highly driven, ambitious, and hardworking people who squeezed as much into their days as possible. After becoming ill, this level of activity is usually no longer possible. For someone who once defined him- or herself through a certain level of productivity at work, this can be devastating. As Greg Charles Fisher relates: "It is not easy to be seen as helpless in a society that prides itself on its go-it-alone mentality."³¹ Along with a significant decrease in energy levels, some patients also face the deterioration of cognitive abilities, leaving them entirely unable to perform tasks that were once central to their lives and careers.

In a culture that promotes independence and the "superman/woman" model of someone who can do and have it all, there is a double blow because patients feel that they are letting down both themselves and others around them. One patient was crushed by the change in his role in both the workforce and within his family. "I was always the go-to guy," he shared, "and now I couldn't even take care of myself."³²

CFS patients can also become depressed from the challenges of modifying their social and personal lives to accommodate their disease. Just as they often have to cut back on hours at work or even quit their jobs altogether, people with CFS also have limited energy and stamina for pleasurable activities. A young, single person might encounter difficulties in dating, for example, while parents often feel they are not able to do enough with their children. "You become a different person,"³³ says Jon Sterling, chairman of the board of the CFIDS Association of America. Sterling says he had barely missed a day of work in twenty years before his illness, and he had tremendous difficulty facing the fact that he had to quit his job and retire on disability insurance.

Just as adults often define themselves in terms of their work and find CFS particularly challenging for that reason, children and teenagers with CFS can easily become depressed about how their lives came to differ from those of their peers. They might face a change in their performance in school, or have to miss a great deal of school, as well as lose out on time with friends and important social events such as dances or parties. A child or teen with ambitious goals can become frustrated and depressed when this illness stands in the way. "Despite being an honors student [prior to becoming sick] … the school pushed me to go into regular classes," Beth shares. "When I was in high school and wanted to take Advanced Placement courses, they tried to refuse, despite my having all the qualifications and skills."³⁴ The school's reluctance was rooted in the fact that Beth had to complete her work from home as she was too sick to attend the actual classes. She finally won the right to remain in the higher-level classes, but in order to keep up with her workload she worked with tutors year-round, seven days a week. This kind of grueling and isolating experience can easily take its toll on the emotions of a young person.

Financial Struggles

For many adults with CFS, the greatest practical challenge is their inability to work as much as they did previously (if at all) and the serious financial strain this places on them. Typically, people who develop chronic illnesses can apply for and receive long-term disability benefits from the government. However, the remaining controversy over cause, diagnosis, and even the very existence of CFS makes the application process for disability payments more complicated. Patients who feel unable to work must seek the assistance of their physicians and often members of a local or national support group to help them collect benefits. Also, some patients recover to different degrees over time, making the decision of who is truly too sick to work—and for how long—especially tricky. Even after an initial qualification for disability payments, CFS patients are often required to undergo repeated evaluation.

In addition to traditional health and disability benefits, other kinds of help are now becoming available for patients who need it. More and more people are becoming aware of the many physical, emotional, and lifestyle complications that affect someone with CFS, and attention is increasingly given to ways of dealing with these problems along with treating the primary symptoms of the disease. But the real key to being able to address all of the symptoms, effects, and complications of CFS lies in uncovering the answer to the most important question of what, exactly, causes the disease.