from Chronic Fatigue Syndrome:
A Guide to Self-Empowerment
By William Collinge,
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
"I would lie there
for hours, totally exhausted, but unable to sleep."
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
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.
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).
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.
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
- mental confusion
- inability to concentrate
- impairment of speech and/or reasoning
- light-headedness, or feeling in a fog
- word-finding problems
- 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
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.
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.
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.
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.
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."
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.
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.
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.
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.
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).
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.
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.
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.
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
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.
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.
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.
AND WEIGHT CHANGES
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.
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.
SORE THROAT, COUGH, AND FEVER
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.
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.
WHAT COURSE DO THE SYMPTOMS TAKE?
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).
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.
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
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.
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.
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.
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.
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
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For information about Dr. Collinge's
four-CD audio program of inspirational talks and guided self-healing
exercises that accompany this book, click here.