The Patient's Guide to
Chronic Fatigue Syndrome & Fibromyalgia
Chapter 3:
Fibromyalgia
Fibromyalgia
(FM) is a common medical condition charac- terized by widespread pain
and stiffness, fatigue, sleep problems and cognitive difficulties. The
disease does not damage tissue and is not progressive or fatal. The
severity of fibromyalgia varies
greatly from patient to patient. Some patients continue to work,
though a significant minority are disabled.
Fibromyalgia
touches many parts of a patient’s life and affects the lives of
those who know her. Patients struggle to control symptoms and to adapt
to the limitations and stresses brought by their illness. Also, they
must deal with loss, uncertainty and, often, lack of understanding
from others. Family members have to come to terms with loss as well
and frequently take on new responsibilities. There are usually
financial consequences; many patients stop working, reduce their hours
or retire early.
Symptoms
Fibromyalgia
is characterized by the presence of multiple symptoms. The severity of
symptoms often waxes and wanes. The most common symptoms are pain,
poor sleep, fatigue and cognitive problems.
Pain
Widespread
pain is the most prominent
symptom of fibromyalgia. The pain, which is described as aching,
burning or stabbing, is generally felt all over the body, though it
can start in one region and spread or move from one area to another.
It may be accompanied by neurological problems such as tingling, and
burning or numbness in the hands, arms, feet, legs or face. The pain
may be intensified by overactivity, non-restorative sleep, anxiety and
stress, and changes in the weather.
Poor
Sleep
The
second-most common symptom of FM is poor sleep. Patients may have
trouble falling asleep or may wake up frequently. In most cases, sleep
is not experienced as restorative or refreshing, probably because of
the limited time spent in deep sleep. Most patients suffer from a
sleep disorder, but poor sleep is also caused by other factors such as
stress, overactivity, and the absence of a good sleep environment or
good sleep habits.
Fatigue
About
three-quarters of FM patients report fatigue of
the type felt by people with CFS. Characterized by a deep sense of
exhaustion, fatigue can manifest as listlessness, sleepiness and a
reduced tolerance for exercise. Like pain, the fatigue of FM can be
intensified by overactivity, poor sleep, emotions and stress.
Cognitive
Problems
Many
fibromyalgia patients experience cognitive difficulties. Often called
“brain fog” or “fibro fog,” cognitive problems include
confusion, fumbling for words, lapses in memory and difficulty
concentrating. Fibro fog is often aggravated by excessive activity,
non-restorative sleep, strong emotions, stress and too much sensory
input.
Other
Symptoms
Many
other symptoms may accompany fibromyalgia, creating additional
discomfort and frustration. Common additional symptoms include tension
or migraine headaches, strong emotions such as depression and anxiety,
jaw pain, ringing in the ears, dizziness, rashes, sensitivity to
light, sounds, smells and temperature, and dry eyes or dry mouth.
Who
Gets Fibromyalgia?
Like CFS, fibromyalgia is a common illness. Estimates
vary, but there are probably at least four
to five million people in the United States with fibromyalgia,
possibly many more. Studies suggest that more than 90% are women.
Diagnosis
There
is no diagnostic marker
for the illness in a patient’s blood or evidence of the illness that
appears through X-rays or other testing. Given the absence of
diagnostic tests, fibromyalgia is identified from the patient’s
report of symptoms, a medical history and a physical examination.
Diagnosis is often a prolonged process. Studies suggest that it takes
an average of five years after the first appearance of symptoms to get
a diagnosis.
Fibromyalgia is diagnosed through
identification of a particular pattern of symptoms. The 
criteria for
diagnosis are:
1)
A
history of at least several months of pain many parts
of the body (left and right sides, above and below the waist)
2)
Pain
in at least 11 of 18 specific “tender points”
on the body. Tender points are locations on the body that are
painful when pressed. Such points in fibromyalgia are found in
particular locations around the neck, shoulders, chest, elbows,
lower back, hips and knees.
Fibromyalgia
can develop on its own or in combination with one or more additional
medical problems. More than half of fibromyalgia patients also
experience Chronic Fatigue Syndrome. Other frequently reported
illnesses include arthritis, lupus, depression, irritable bowel
syndrome (IBS), gastroesophageal reflux disease (GERD), irritable
bladder syndrome (interstitial cystitis), myofascial pain, chemical
sensitivity, Lyme disease, sleep disorders such as apnea and restless
legs syndrome, and thyroid problems. The presence of other illnesses
can intensify fibromyalgia symptoms. Treating the other conditions
usually alleviates fibromyalgia as well.
Causes
The
cause of
fibromyalgia is still unknown, but current research focuses on how
pain signals are amplified by the central nervous system (spinal cord
and brain). This theory is often called the “central
sensitization” model, a contrast to the idea of pain as a signal
sent to the brain in response to an event in the body. Fibromyalgia
patients have elevated levels of substance P, a neurotransmitter that
communicates pain signals, and lower levels of chemicals such as
serotonin and dopamine that mute pain sensations.
There
is evidence suggesting a genetic susceptibility to fibromyalgia. The
onset of FM is often triggered by an illness or trauma such as a fall
or accident. It is possible that there are multiple causes for
fibromyalgia, each of which produces increased pain.
Treatments
Like
treatment of CFS, treatment of fibromyalgia focuses on controlling
symptoms rather than curing the illness. Approaches include
medications, alternative treatments and self-help measures.
Medications are often used for improving sleep and controlling pain,
though their effectiveness varies greatly from patient to patient.
Medication regimes are usually developed through experimentation with
different medications and dosages. Exercise is commonly recommended,
both for reducing pain and stiffness, and for reversing
deconditioning. The lifestyle adjustment strategies used with CFS,
such as pacing and stress management, are also appropriate for
fibromyalgia patients.
The
three principles that govern treatment of CFS apply also to
fibromyalgia: 1) the use of multiple strategies, 2) experimentation,
and 3) an emphasis on lifestyle change. Because fibromyalgia patients
usually have more than one symptom and because each symptom usually
has more than one cause, it is helpful to use a combination of
treatments and coping strategies. Since there is no standard treatment
for fibromyalgia and treatments helpful during one period may later
become ineffective, patients have to experiment to find what works for
them. Lifestyle adjustments, which are inexpensive and safe, typically
produce more predictable results.
Pain
Pain
relief is often sought through medications, which may include
over-the-counter pain relievers, prescription pain relievers,
prescription medications intended primarily for sleep, and
anti-depressants. Exercise is often used to reduce stiffness and to
strengthen muscles.
Just
as with CFS, pacing is an effective strategy for controlling pain in
FM. Staying
within activity limits, having short activity periods, switching tasks
frequently and taking rest breaks are all helpful. Because pain is
felt more intensely when a person is tired or under stress, reducing
fatigue and stress also reduces pain. Similarly, poor sleep
intensifies pain, so improving sleep is also a way to control pain.
Other common pain control strategies include heat and cold treatments,
massage, and attention to body mechanics (how the body is held and how
it is moved).
Sleep
Treating
sleep is another area in
which use of an experimental approach involving a variety of
strategies is helpful. No single medication has proven helpful in
treating sleep problems for all FM patients. Also, drugs that are
effective for a while may later become ineffective. Medications
commonly used to treat sleep problems include over the counter
products like melatonin and valerian, antihistamines such as Benadryl,
clonazepam (Klonopin), tricyclic antidepressants such as amitriptyline (Elavil),
benzodiazepines such as Halcion and the hypnotic drug Ambien. Often, a
combination of two drugs is prescribed, one to initiate sleep and
another to maintain sleep.
Sleep
can be improved through using good sleep habits such as having regular
times to go to bed and get up, limiting daytime napping, avoiding
caffeine and other stimulants before bedtime, and practicing
relaxation to fall asleep. Good sleep is also promoted by having a
quiet environment, a good bed and an appropriate temperature in the
bedroom. Reducing pain before going to bed and letting go of worries
with techniques such as a worry log or To Do list for the next day can
also help improve sleep.
Fatigue
Fatigue is
usually addressed using lifestyle change, especially pacing. Pacing
includes strategies such as setting priorities, taking regular rests,
having short activity periods, living by a schedule, and managing
special events like vacations and holidays. Fatigue can also be
lessened by addressing pain and poor sleep, both of which intensify
fatigue. Stress management, exercise and healthy eating can help
reduce fatigue by addressing other causes of fatigue: stress,
deconditioning and poor nutrition.
Cognitive Problems
Strategies that
are generally helpful for reducing the symptoms of fibromyalgia, such
as pacing and stress management, also help reduce brain fog. Other
techniques that often produce some control of fog include getting good
sleep, limiting sensory input, using lists and other reminders, having
daily and weekly routines, and keeping an orderly physical environment.
For
more on treatment options for these four symptoms, see Chapter
8.
Stress,
Emotions, Support & Loss
As
mentioned earlier, fibromyalgia has comprehensive effects, touching
many parts of patients’ lives and creating many challenges. A
treatment plan should address, in addition to symptom management,
issues such as managing stress and emotions, strengthening support
systems and coming to terms with loss. Dealing successfully with these
additional challenges usually reduces symptoms, so is also a form of
symptom management. For more on stress, emotions, support and loss,
see Chapters 13 to 16.
Prognosis
Fibromyalgia is
neither progressive, nor fatal. Just as there is no cure for CFS,
there is no treatment that cures fibromyalgia. But, as with CFS, some
patients experience a spontaneous recovery and many experience notable
improvement. In fact, improvement is probably the most common outcome
for fibromyalgia, experienced by half to two thirds or so of patients.
A number of medications for the treatment of fibromyalgia are being
studied; the first prescription drug specifically for FM may be
approved within the next year or two.
As
with CFS, the course of fibromyalgia may vary. The location and
severity of pain can change over time. Symptoms can be intermittent,
fluctuating or persistent. Triggers of symptom intensification may
include excessive activity, inactivity, stress, trauma, repetitive
motion, poor sleep, strong emotions and weather changes.
References
Fransen,
Jenny and Jon Russell. The
Fibromyalgia Help Book: A Practical Guide to Living Better with
Fibromyalgia. St. Paul Minn.:
Smith House, 1996.
Goldenberg,
Don. Fibromyalgia. New York: Penguin Putnam, Guilford Press,
2002.
Matallana,
Lynne. The Complete Idiot’s
Guide to Fibromyalgia. New York: Penguin, 2005.
Starlanyl,
Devin and
Mary Ellen Copeland. Fibromyalgia & Chronic Myofascial Pain: A
Survival Manual. Oakland: New Harbinger, 2001.
