Recovering from Chronic Fatigue Syndrome:
A Guide to Self-Empowerment

By William Collinge, Ph.D.

Table of Contents

Chapter 2. Onset and the Chronic Phase:
Symptoms and Cycles

 "It was like I was in a coma. You could have driven a truck through my room and I wouldn't have awakened."  -- Sarah
 "I would lie there for hours, totally exhausted, but unable to sleep."  -- Debbie
     These statements are an example of the extremes this syndrome encompasses. Few diseases have as diverse an array of symptoms. There have been many attempts to describe the symptom picture in CFS, and the subject is complicated by the fact that there are such tremendous differences among individuals with the syndrome. 
     Another example is that in some people the fatigue is not necessarily the most prominent symptom. They may have a great deal of cognitive disturbance, however. For someone else, fatigue may be disabling, while relatively little cognitive disturbance is present. In this chapter I will describe the onset, survey the major symptoms, and describe the cyclical nature of CFS. 

     The Tahoe study found that about 87% of patients' chronic fatigue started suddenly accompanied by flu, cold, or apparent viral infection (the latter characterized by at least two of the following: fever, headache, myalgias, sore throat, earache, congestion, runny nose, cough, diarrhea, and fatigue). 
     While onset is generally acute with the above symptoms, in a few cases it has begun with another illness, or some other stressor such as pregnancy. There are many theories about how onset is triggered, but the end result seems to be that the immune system becomes stuck in a state of hyper-activation. This involves the chronic overproduction of chemicals which ordinarily help activate a healthy immune response. When overproduced to such an extreme, they become toxic to the body and cause the symptoms of CFS.

     There is a growing consensus among researchers that cognitive dysfunction, or disturbance in mental functioning, is a must for a diagnosis of CFS. In fact, Paul Cheney, M.D. describes this as "a disease of cognitive dysfunction." The Tahoe study found 78% of the patients to have lesions in their brain tissue, as revealed by magnetic resonance imaging, and this would certainly help explain the list of cognitive symptoms below. There are many cognitive impairments that are common, including:

  • problems with memory sequencing
  • spatial disorganization
  • trouble giving and following directions
  • difficulty processing problems
  • slow intellectual speed
  • difficulty processing visual and auditory information
  • forgetfulness
  • irritability
  • mental confusion
  • inability to concentrate
  • impairment of speech and/or reasoning
  • light-headedness, or feeling in a fog
  • word-finding problems
  • distractibility
  • difficulty processing more than one thing at a time
  • inability to perform simple math functions
  • problems with verbal recall
  • motor problems
  • disturbance in abstract reasoning 
  • sequencing problems
  • memory consolidation (extracting information from the environment and laying it down in the form of a memory)
  • short term memories being easily distorted or perturbed
     The most common cognitive symptom is difficulty concentrating, found in over 80% in the Tahoe study. Many patients consider the cognitive symptoms the most devastating, more than even the fatigue, pain, or the inability to work. The situation is made worse by the fact that to cope with or adjust to the debilitation of the illness requires mental and emotional resources. With these disturbed, the sense of helplessness and frustration can be compounded.

     Sixty-three percent of patients in the Tahoe study were found to have sleep difficulties. Problems can be either of interrupted sleep or inability to remain awake. And when sleep is managed, it is not refreshing sleep. Rather, one awakens still feeling exhausted, or may feel exhausted after just a few minutes out of bed.
     This is perhaps the most important symptom to treat in CFS. Good quality rest is necessary in order for the body's self-repair mechanisms to work effectively, and it takes time for the immune system to heal itself. Yet because of the chronic immune activation, the immune system is churning out substances around the clock which disturb the sleep center of the brain. In addition, many people with CFS have chills or night sweats which add to the difficulty. The sleep disturbance is aggravated by anxiety about the consequences of not being able to sleep. 

     Seventy percent of the patients in the Tahoe study were found to have problems with anxiety, depression, or mood changes. There is wide range of emotional problems that may accompany CFS, as is the case with many other chronic illnesses. However, CFS is different from many other conditions in that the activity of the disease process itself affects brain chemistry, neurological functioning, and emotions directly. 
     In this sense, much of the emotional difficulty could be called somato-psychic--that is, resulting from problems in the soma, or body, affecting the mind or psyche. In the words of Mark Demitrack, M.D., Senior Collaborating Scientist, Clinical Neuroendocrinology Branch, National Institute of Mental Health, "Psychiatric symptoms reflect... the direct involvement of the brain and central nervous system in the overall pathophysiology of this illness."
     Because this fact is poorly understood by many health professionals, and especially mental health professionals, CFS patients often end up believing that their emotional disturbances are entirely the result of flaws in their attitudes or in their understanding of how to cope with life.
     Of course the simple fact of living with a chronic illness and all the uncertainty it brings is also cause for emotional stress. It is impossible to determine how much emotional disturbance is the direct result of the disease process and how much is a result of the psychological stress of having the illness. Yet many patients breathe a sigh of relief when they realize that they are not crazy and that their emotional disturbance is most likely attributable to the activity of the disease process.
     Remember, our emotional experiences can be triggered by events in either the mind or the body, and there is usually an interaction between the two. Originating in the mind, our emotions can cause changes in the body. And events in the body can change our chemistry and affect our thoughts. 
     Of the emotional symptoms, most prominent are anxiety and depression. Also common are panic attacks, mood swings, and personality changes. All these problems are frequently accompanied by catastrophic fantasies about what the future holds, which can accelerate or deepen the distress. Another common occurrence which tends to exacerbate these symptoms is shortness of breath.
     It is not uncommon for people with CFS, especially with the more severe cases, to have suicidal thoughts or feelings. This is entirely understandable and nothing to be ashamed of. In a sense, it represents the inner child's desperate wish to escape from a seemingly impossible situation. 

     In the Tahoe study, about 6% were bedridden, about 28% could only work part time, and less than half could fulfill all their home or work activities (with no energy left for anything else).
     The fatigue that comes with CFS is usually an overwhelming, debilitating kind much more severe than that arising from normal exertion. Sometimes it is experienced in waves, accompanied by nausea. There may be a pattern where certain times of the day it is less severe. There is a wide range of severity, and some people must remain in bed eighteen or more hours per day, barely able to drag themselves to the bathroom. Others are able to function in a job relatively normally until "hitting a wall" of fatigue at the same time each afternoon.
     For many, this is the most distressing symptom of the syndrome. While they may have a pattern or cycle of relatively good days followed by periods of severe depletion, their "good days" are never as good as before they became ill.
     Another aspect of the fatigue is called "post exertional malaise." Many people with CFS are able to exercise moderately and feel fine while doing it. However, a few hours later or the next day they may find themselves with a major flare-up of symptoms.

     Heart irregularities are reported by approximately 40% of people with CFS. The most common symptoms are chest pain, shortness of breath, arrhythmias, missed heartbeats, rapid heartbeats, and chest pounding. Fortunately, the consensus among CFS experts is that the cardiac symptoms do not represent serious coronary problems. They may represent problems absorbing magnesium, an element widely used to remedy such symptoms; muscular weakness in the diaphragm; fibromyalgia, a common feature of CFS; or myocarditis. Of course, other forms of heart disease are possible independently of the syndrome and should be ruled out.

     The senses are also affected, which is not surprising with a syndrome affecting the person on such a global scale. Sensitivity may be dramatically increased to cold and heat, sound, light, and touch. Between 40 and 68% in the Tahoe study were found to have odd sensation in the skin. There may at times be numbness in the face or extremities, burning in the hands or feet, or problems with dizziness and balance. 
     Disturbances of vision are quite common and include blurred vision, sensitivity to light (called "photophobia"), eye pain, frequent prescription changes, seeing spots, a variety of neuromuscular dysfunctions in the eyes. 

     There are a variety of types of pain associated with CFS. They include headaches, pain in the joints, painful lymph nodes, back pains, chest pains, and rashes. Muscle pain can be similar to that which most of us have experienced when we have had the flu, except it is on a chronic basis. This is a generalized, dull aching in the muscles and joints. There may also be sharp pains in specific muscle groups. The terms "myalgia" and "arthralgia" are often used to describe chronic muscles pains, aching and tenderness of this sort. In the Tahoe study about 85% were found to have myalgias and headaches, and about 75% had swollen lymph glands. 
     It is now thought that the disease known as "fibromyalgia" may actually be related to CFS, and that the two may be expressions of the same disease process. Fibromyalgia has also been a disease also in search of a specific cause, possibly viral. It is characterized by chronic musculoskeletal pain, tender points, and fatigue, and has many other symptoms of CFS. 
     It is the second or third most common diagnosis in the field of adult rheumatology, with a prevalence rate estimated at around three to six million patients in the U.S. The more we learn about fibromyalgia and CFS, the less we are able to distinguish them as separate entities. Increasingly, fibromyalgia is being included among the diagnostic criteria for CFS.

     Gastrointestinal disturbances include new onset of food allergies and sensitivities, vomiting, yeast overgrowth in the gut, abdominal pain, constipation, irritable bowel, intolerance to alcohol, and bloating. Many patients are diagnosed as having irritable bowel syndrome. In the Tahoe study over 35% were found to have problems with diarrhea, 47% with stomach aches, over half with nausea, and 38% with loss of appetite. 
     Another common occurrence is weight change, either up or down. About 27% had gains of at least 10 pounds, while about 14% had losses of at least 10 pounds. 

     The Tahoe study found over three quarters of patients to have problems with recurrent sore throat, 53% with cough, and over 46% with recurrent fevers at home.

     There is a mixture of other symptoms associated with the syndrome for many people, including intermittent swelling of the fingers, eczema, other rash, hair loss, low body temperature, menstrual problems, and endometriosis. 

     It is reassuring to know that unlike other chronic illnesses, CFS typically does not have a "progressive downhill course" of getting worse over time. Rather, it is characterized by an acute onset followed by a chronic phase with cyclical waxing and waning of symptoms. The cycles gradually diminish in intensity as you move into the recovery phase (the subject of the next chapter).
     CFS has, however, a wide range of symptom severity. This is unlike other viral illnesses with a much narrower range of responses, as, for example, in the common cold, mononucleosis, or chicken pox.
     We can understand these extreme individual differences from the insights of the AIDS research mentioned in Chapter 1. There are genetically-determined differences in how people's bodies respond to a disease process.

     The chronic phase is marked by settling into cycles of symptom severity. The degree of disability might vary according to a pattern for the individual. For many, the cyclical nature of CFS makes the road to recovery a bumpy one. In a few people, especially in more severe cases, there may not be such obvious cycles, but a more steady unrelenting state of debilitation.

     It is a common occurrence for a person to go into a period of remission--the reduction of symptoms--and feel so excited about it that they try to make up for all the lost time and activity very quickly. This of course can bring on a relapse--the return of symptoms--shortly afterward. We will discuss this problem and how to prevent it in Chapter 5. 
     Remissions can be great or slight, brief or long. They may follow a regular pattern or an irregular pattern. Some symptoms may go into remission while certain others remain. One of my patients, Helen, had a pattern in which her fatigue symptoms would improve markedly, but her mental confusion might not improve to such a noticeable degree. With a little self examination, you should be able to describe the pattern your remissions take. 
     Many relapses are triggered by stressful events, which can be either physical or emotional. This can include positive experiences such as a family wedding, a vacation, or a holiday period, as well as negative events like marital problems, a car accident, or financial worries. No doubt you have been able to point to particular stresses as triggering a relapse. 
     However, some relapses occur simply because of the cyclical nature of the disease process in CFS and cannot be attributed to particular stresses. You can be living a relatively stress-free life and doing all the right things, and you will still have relapses. Hence it does not make sense to assume that you somehow caused a given relapse. 
     In the chronic phase, one of the biggest dangers to avoid is the tendency to resign yourself to being a "helpless victim" with an "incurable" illness. You can learn to monitor your patterns of remission and relapse. You can soften the impact of the relapses by anticipating them and taking action to support your body with extra rest of other forms of self-care. And you can arm yourself with the knowledge that recovery is possible. In the next chapter we will explore the transition into the recovery phase.

Audio CD Program Available
Recovering from CFS:
The Home Self-Empowerment Program

For information about Dr. Collinge's four-CD audio program of inspirational talks and guided self-healing exercises that accompany this book, click here.