Fibromyalgia
June 1999
WHAT IS FIBROMYALGIA AND WHAT ARE
ITS SYMPTOMS?
Fibromyalgia (also
called fibrositis or fibromyositis) is a syndrome that causes chronic, sometimes
debilitating muscle pain and fatigue. The pain occurs in areas where the muscles
attach to bone or ligaments and is similar to the pain of arthritis. The joints
themselves are not affected, however, so they are not deformed nor do they deteriorate
as they may in arthritic conditions. The pain typically originates in one area,
usually the neck and shoulders, and then radiates out. Most patients report
feeling some pain all the time; and many describe it as "exhausting". The pain
can vary, depending on the time of day, weather changes, physical activity,
and the presence of stressful situations; it has been described as stiffness,
burning, radiating, and aching. The pain is often more intense after disturbed
sleep. The other major complaint is fatigue, which some patients report as being
more debilitating than the pain. Fatigue and sleep disturbances are, in fact,
almost universal in patients with fibromyalgia, and if these symptoms are not
present, then some experts believe that physicians should seek a diagnosis other
than fibromyalgia. Between a quarter and a third of patients experience depression,
and disturbances in mood and concentration are very common. (In one study 46%
of patients had been diagnosed with depression in the past.) Fibromyalgia patients
are also prone to tension or migraine headaches. Other symptoms include dizziness,
tingling or numbness in the hands and feet, and gastrointestinal problems, including
irritable bowel syndrome with gas and alternating diarrhea and constipation.
Some patients complain of urinary frequency caused by bladder spasms. Women
may have painful menstrual periods.
WHAT CAUSES FIBROMYALGIA?
Fibromyalgia is sometimes
categorized as primary or secondary; primary fibromyalgia is the more common
form.
Causes of Primary Fibromyalgia
The cause or causes
of primary fibromyalgia are not known; this condition is also sometimes referred
to as idiopathic fibromyalgia. Many experts believe that fibromyalgia is not
a disease but rather a dysfunctional disorder caused by a constellation of biologic
responses to stress in individuals who are more susceptible to such stress because
of negative personal histories or genetic factors.
Family Factors.
One recent study reported that 28% of the children of mothers with fibromyalgia
also develop the disorder. There were no differences in psychological
disorders among those offspring with fibromyalgia and those who did not develop
it. Another study noted that 66% of parents of children with fibromyalgia
reported some sort of chronic pain--with about 10% reporting fibromyalgia.
Close-knit families, oddly enough, were more likely to be associated with
severe cases of childhood fibromyalgia.
One noted that the severity of the disorder increased in children whose
parents were less able to cope with their children's pain. It is not
clear if genetic or psychological factors or both are involved.
Chronic Sleep
Disturbance. Some experts believe that disturbed sleeping patterns may be
the original precipitating factor for many cases of fibromyalgia pain. In one
study, volunteers who did not have fibromyalgia reported fibromyalgia-like pain
after they had been subjected to disrupted deep sleep. Disturbed sleep appears
to trigger factors in the immune system that cause inflammation and pain.
Abnormalities
in the Brain. Studies of hormonal, metabolic, and brain chemical activity
in fibromyalgia patients have shown a number of abnormalities. Brain scans of
fibromyalgia patients have revealed reduced blood flow to certain regions of
the brain related to pain sensation. Of particular interest to researchers are
possible abnormalities in the brain system known as the hypothalamus-pituitary-adrenal
gland axis, which controls important functions, including growth, sleep, response
to stress, and depression. One research target is the hormone somatomedin C
(also called insulin-like growth factor), which is produced by the pituitary
gland in the brain during deep sleep and is responsible for communicating information
about pain-producing stimuli to the brain. Very high levels of somatomedin C
have been detected in the spinal fluid of fibromyalgia patients. Such increased
levels may cause a heightened sensitivity for pain in such patients, who can
experience pain even after mild muscular activity. This causes patients to reduce
their physical activity, which, in turn, results in muscle weakness, leading
to a perpetual loop of muscle atrophy, and increasing pain with less and less
physical exertion. The pain also causes on-going sleep disturbance. Excess somatomedin
C may be due to a genetic defect or may be derived from early unhealthy sleep
habits that, over time, cause hormonal and brain chemical imbalances.
People with fibromyalgia
also tend to have low levels of the neurotransmitter serotonin and its precursor,
an amino acid called tryptophan. (A neurotransmitter is a chemical in the brain
that serves as a messenger between neurons.) Low levels of both these chemicals
are associated with depression and other symptoms of fibromyalgia, including
gastrointestinal distress, migraine headaches, and anxiety. Some experts believe
that migraine headaches and fibromyalgia are related because of possible defects
in the systems that regulate serotonin and another neurotransmitter, epinephrine
(commonly called adrenaline). Low levels of magnesium have also been noted in
both fibromyalgia and migraine sufferers.
Autoimmunity.
Fibromyalgia resembles a number of rheumatic disorders that are known as autoimmune
disorders, including rheumatoid arthritis and systemic lupus erythematosus.
These diseases occur when a defective immune system produces factors known as
autoantibodies, which attack proteins in the body's own tissue, mistaking them
as antigens (foreign proteins). Recently, researchers have identified certain
autoantibodies in many fibromyalgia patients that affect neurologic and hormonal
systems. There is no strong evidence, however, that a faulty immune system is
a primary cause of fibromyalgia.
Post-Traumatic
Stress Disorder. One study has indicated that the incidence of sexual and
physical abuse is higher in female patients with fibromyalgia than in the general
population. This could indicate that posttraumatic stress syndrome may play
a role in the development of this disorder in some patients. Post-traumatic
stress disorder (PTSD) is an anxiety disorder that is a reaction to a specific
traumatic event. Symptoms of this condition, which can occur for years after
the traumatic event include emotional withdrawal, hopelessness, irritability,
mood swings, sleep problems, inability to concentrate, and an excessive startle
response to noise. There is some evidence that PTSD actually results in changes
in the brain, possibly from long-term overexposure to stress hormones.
Hypervigilance.
It has been suggested that some factor or a combination of factors, such
as a genetic susceptibility, biologic abnormalities, chronic sleep deprivation,
or trauma, causes generalized hypervigilance , an amplification of sensation.
People with this condition are oversensititive to external stimulation and are
preoccupied with the sensation of pain. One study compared three groups of individuals:
those with fibromyalgia; patients with rheumatoid arthritis; and people without
these disorders. They were given a questionnaire to assess their response to
pain and noise. Of the three groups, the fibromyalgia patients were least tolerant
and most attentive to such stimuli.
Muscle Cell Abnormalities
. Early research suggested that fibromyalgia is basically a muscular disorder.
One relatively recent study reported that fibromyalgia patients had lower levels
of the muscle-cell enzyme phosphocreatine and adenosine triphosphate (ATP).
Such enzymes regulate the ebb and flow of calcium in muscle cells, an important
component in their ability to contract and relax. If ATP levels are low, calcium
is not "pushed back" into the cells and the muscle remains contracted. Such
abnormal enzyme levels could derive from signals in the brain, although some
researchers have observed overly thickened capillaries in the muscle tissue
of fibromyalgia patients, which could produce lower enzymes levels as well as
reduce the flow of oxygen-rich in the muscle tissue. Nevertheless, most research
is now showing that fibromyalgia is probably due to abnormalities in nervous
or immune systems rather than in muscles.
Causes of Secondary Fibromyalgia
Secondary fibromyalgia
is caused by specific disorders, including injury, ankylosing spondylitis, or
surgery. The symptoms are identical to those of primary fibromyalgia but are
harder to treat. In one study, secondary fibromyalgia developed in over 20%
of patients who had neck injuries.
WHO GETS FIBROMYALGIA?
Fibromyalgia is the
most common cause of widespread muscular pain and affects an estimated 2% of
the general population. Two thirds of patients are women, and their symptoms
are more severe than men's. An increased incidence of fibromyalgia has been
reported in people who have relatives with the disorder, indicating that a genetic
component may cause certain people to be more susceptible to fibromyalgia. The
disorder usually occurs in people between 20 to 60 years of age and peaks at
age 35. In one study, however, fibromyalgia increased with age and had a prevalence
of over 7% in patients between 60 and 79 years of age. A condition called juvenile
primary fibromyalgia, which appears in children, is uncommon, but studies indicate
that its incidence is increasing. One study found that 1.2% of school children--all
girls--met the criteria for fibromyalgia. Other studies have found an even higher
prevalence of fibromyalgia in children.
HOW IS FIBROMYALGIA DIAGNOSED?
Diagnostic Criteria
In spite of increasing
evidence that fibromyalgia is a physical disorder, there is no unequivocal objective
method for diagnosing the problem. In general a diagnosis of fibromyalgia requires
the presence of at least 11 of 18 specific areas on the body that are intensely
painful (not just tender) when pressed. These trigger points can be found in
the following areas:
• on left or right side of the back of the neck, directly below the hairline;
• on left or right side of the front of the neck, above the collar bone
(clavicle);
• on left or right side of the chest, right below the collar bone;
• on left or right side of the upper back, near where the neck and shoulder
join;
• on left or right side of the spine in the upper back between the shoulder
blades (scapula);
• on the inside of either arm, where it bends at the elbow;
• on left or right side of the lower back, right below the waist;
• on either side of the buttocks right under the hip bones;
" on either knee cap.
(Some people also experience tender points at the bottom of their feet.) To
confirm the diagnosis, widespread pain, which is experienced in upper and lower
and left and right parts of the body and in the spine, must persist for at least
three months. Using such criteria is helpful in making a diagnosis of fibromyalgia,
but it is not completely reliable and misses about 10% of patients. Because
the sensitivity of tender points may vary depending on circumstances, a physician
may re-check pressure points that do not respond the first time in patients
who have other significant symptoms. Some experts believe that fibromyalgia
can be diagnosed if only 8 to 10 tender points are identified but the patient
also has at least three other relevant symptoms, including morning stiffness,
fatigue, sleep disturbance, numbness or tingling in the hands and feet, or headache.
Although symptoms are similar in children, some experts suggest that they often
have no set number of pain trigger points. In one study, children had an average
of 9.7 trigger point locations compared to the minimum of 11 in adults. In general,
children with fibromyalgia most often experienced sleep disorders and diffuse
pain, and less frequently headache, general fatigue, and morning stiffness.
Medical and Personal History
A physician should
always take a careful personal and family medical history, which would include
a psychological profile and a history of any factors that might be indicative
of disorders other than fibromyalgia, including recent weight change, physical
injuries, infectious diseases, muscle weakness, rashes, and any instances of
sexual, physical, or substance or alcohol abuse. The patient should report any
drugs being taken, including vitamins and over-the-counter or herbal medications.
Physical Examination
Any physical examination
for fibromyalgia requires that the physician press firmly on all potential trigger
spots. It also includes scrutiny of nails, skin, mucous membranes, joints, spine,
muscles, and bones to help rule out arthritis, thyroid disease, and other disorders.
Other Tests
In most cases of
fibromyalgia, laboratory tests tend to be normal; if they are abnormal, then
other disorders should be suspected. Tests for specific diseases may be given
if a family history or symptoms of other disorders are present. Sometimes blood
tests, such as thyroid and liver function tests, blood count, tests of certain
antibodies, and sedimentation rate, are recommended. Follow-up psychological
profile testing may be suggested if laboratory results do not indicate a specific
disease. One study found high levels of an autoantibody called antipolymer antibody
in nearly half of fibromyalgia patients but not in patients with autoimmune
diseases, such as rheumatoid arthritis. A test for this antibody is in development,
and may help differentiate between fibromyalgia and these other, sometimes similar,
disorders.
WHAT OTHER CONDITIONS SHOW THE
SAME SYMPTOMS AS FIBROMYALGIA?
Between 10% and 30%
of office visits are due to symptoms that resemble those of fibromyalgia, including
fatigue, malaise, and general muscle pain. No laboratory test can confirm a
diagnosis of fibromyalgia, and if tests for tender spots are ambiguous, physicians
will rule out other conditions, including various physical diseases, chronic
fatigue syndrome, sleep disturbances, medications, toxins, and psychological
causes. It should be noted that a diagnosis of any of these disorders may not
always rule out fibromyalgia, which can accompany other common and similar conditions.
Chronic Fatigue Syndrome
About 75% of patients
fit the diagnosis for both fibromyalgia and chronic fatigue syndrome (CFS).
As with fibromyalgia, the cause of CFS is unknown and its course is chronic.
Both disorders can be diagnosed by a physician only on the basis of symptoms
reported by the patient and cannot be confirmed by laboratory tests or other
objective measures. The two disorders share most of the same symptoms; some
patients with CFS even exhibit similar tender pressure points, although muscle
pain is less prominent in patients with CFS. The two disorders are even treated
almost identically. Fatigue is the dominant symptom in CFS and pain with tender
points is predominant in fibromyalgia. Some physicians believe that fibromyalgia
and CFS are the same and define fibromyalgia as an extreme variant of chronic
fatigue syndrome. One physician described the relationship between fibromyalgia
and chronic fatigue as similar to one between a migraine and a headache. There
is some physical evidence, however, that the two disorders may be distinct,
which offers the possibility for treatments that are specific to each. Some
research indicates, for example, that patients with fibromyalgia may have high
levels of a compound called substance P in their spinal fluid while CFS patients
may not. Levels of substance P change in response to pain. [For more information
see Well-Connected , Report #7, Chronic Fatigue Syndrome .]
Lyme Disease
Lyme Disease resembles
fibromyalgia. Early Lyme disease can usually be easily diagnosed, but a delayed
response or recurrence of this disorder may be mistaken for fibromyalgia. Late
Lyme disease can usually (but not always) be ruled out using laboratory tests
that identify the presence of the bacteria that causes this tick-borne disease.
[For more information, see Well-Connected Report #16, Lyme Disease
.]
Other Myalgias
Myalgia is the common
term for muscle pain. A number of disorders of unknown causes may be similar
to fibromyalgia. Polymyalgia rheumatica is one such disorder; it causes pain
and stiffness in the neck and shoulders and in the hip and thigh. Morning stiffness
is common and patients may also experience fever, weight loss, and fatigue.
Tender points with this disorder almost always occur in the hip and shoulder
area. It also usually develops in women over 50. A blood test called the erythrocyte
sedimentation rate (ESR or sed rate) often shows elevated results in polymyalgia
rheumatica. It is important to rule out polymyalgia rheumatica because, although
the condition often resolves in about a year, there is a risk of persistent
disease and, worse, it is associated with a rare condition called temporal arteritis,
which causes blindness if not healed.
Rheumatoid Arthritis and Other
Autoimmune Diseases
Some diseases that
cause symptoms similar to fibromyalgia are known as autoimmune disorders, in
which the person's immune system attacks the body's own tissues. Like fibromyalgia,
many of these diseases are more common in women than in men. Rheumatoid arthritis
is most apt to mimic fibromyalgia and includes morning stiffness, fatigue, and
tender points. Pressing such points, however, does not produce the intense pain
that occurs with fibromyalgia, and abnormal laboratory tests can usually differentiate
this disorder from fibromyalgia. Another autoimmune disease is Hashimoto's thyroiditis,
a form of hypothyroidism (low levels of thyroid hormone), which, if undetected,
can cause widespread muscle aches, depression, and fatigue. Other autoimmune
disorders with similar symptoms and with a higher prevalence in women than men
are systemic lupus erythematosus (SLE) and multiple sclerosis. Fibromyalgia
symptoms, in fact, are very common in SLE patients, although the two conditions
are thought to be distinct. Autoimmune diseases evolve slowly, and even when
physicians diagnosis fibromyalgia, they should keep track of any changes in
symptoms over time in order to rule out these other illnesses, which require
different treatments.
Other Medical Conditions
Many diseases, both
benign and serious, can cause general muscle aches and prolonged fatigue, including
chronic hepatitis, anemia, infections, various forms of cancer, gout, neuromuscular
diseases, and diabetes. Physicians can usually distinguish these diseases from
fibromyalgia after a clinical evaluation and laboratory testing. Patients and
physicians should not overlook even previously treated diseases, since they
may not have been completely resolved and may cause residual symptoms.
Major Depression Disorder
Like chronic fatigue
syndrome, some physicians still believe that fibromyalgia is not a physical
illness but a result of an emotional disorder. The link between psychological
disorders and fibromyalgia is problematic because so many of the symptoms overlap.
Fatigue, listlessness, poor concentration, memory deficits, agitation, and sleep
disorders can all be manifestations of either depression or fibromyalgia. Depression
is very common, affecting up to a fifth of all Americans at some point in their
lives; the odds are, then, that a similar high percentage of fibromyalgia patients
will also experience depression independent of the muscular disorder. In addition,
depressed feelings in people with fibromyalgia are often reactions to the pain
and fatigue caused by this syndrome. They may often experience deep feelings
of rejection and alienation if their symptoms are disregarded by those close
to them or by their physicians. Such emotions, however, are situational and
temporary, not part of chronic depression. Criteria have been established to
help physicians differentiate between normal discouragement experienced by everyone,
including fibromyalgia patients, and major depression disorder. Unlike ordinary
periods of sadness, an episode of depression usually lasts many months. Symptoms
of depression include (1) a depressed mood everyday, (2) significant weight
gain or loss (more than 10% of an individual's normal body weight), (3) insomnia
or excessive sleeping, (4) restlessness or a sense of being slowed down, (5)
low daily energy, (6) worthless or inappropriate guilty feelings, (7) an inability
to concentrate or to make decisions, and (8) suicidal thoughts. The presence
of several of these symptoms suggests depression, rather than fibromyalgia,
particularly if the tender points typical of fibromyalgia are not also
present. [For more information, see Well-Connected Report # 8, Depression.]
Sleep Disturbances.
Another symptom of
fibromyalgia is sleep disturbance, which may actually be due to sleep disorders,
including chronic insomnia, restless legs syndrome, or obstructive sleep apnea
syndrome, a breathing disorder often marked by loud snoring and thrashing in
bed. A person may have sleep apnea and not realize it unless it is brought to
his or her attention by a bed partner or observer. [For more information, see
Well-Connected Report # 27, Insomnia and Restless Legs Syndrome, or
Report # 65, Sleep Apnea and Narcolepsy .]
Drugs and Alcohol.
Fatigue is a side
effect of many prescription and over-the-counter medications, such as antihistamines.
In addition, dependency on or abuse of alcohol or illicit drugs may manifest
as chronic fatigue. Medications should be considered as a possible cause of
fatigue if an individual has recently started, stopped, or changed medications.
Withdrawal from caffeine can produce depression, fatigue, and headache.
Chemicals and Other Toxins
Exposure to various
chemicals and environmental toxins such as solvents, pesticides, or heavy metals
(cadmium, mercury, or lead) can cause fatigue, chronic pain, and other symptoms
of fibromyalgia.
HOW SERIOUS IS FIBROMYALGIA?
Fibromyalgia can
be mild or disabling, and the emotional repercussions can be substantial. There
are estimates that 30% to 40% of patients have had to stop work or change jobs.
About half of all patients have difficulty with or are unable to perform routine
daily activities. There is some indication that such patients are at higher
risk for carpal tunnel syndrome and osteoporosis. The pain, emotional repercussions,
or sleep disturbances may lead to self-medication and overuse of sleeping pills,
alcohol, drugs, or caffeine. Desperation may encourage a belief in false cures
and potentially dangerous use of herbal or so-called natural remedies.
Although the disease
is chronic, it is neither progressive nor fatal, and remission can occur in
many patients who participate in disease management programs. Children with
fibromyalgia tend to have a better outlook than adults. In adult patients who
were studied for four and a half years, those who had adequate exercise had
the most promising outcome; those with a significant life crisis or who were
on disability had a poorer outcome than others. Outcome was determined by improvements
in the patients' capacity to work, their own feelings about their condition,
pain sensation, disturbed sleep, fatigue, and depression.
WHAT ARE LIFESTYLE AND THERAPEUTIC
METHODS FOR TREATING AND MANAGING FIBROMYALGIA?
Experts recommend
a multi-faceted approach for treating fibromyalgia that involves exercise to
reduce pain and strengthen muscles, regular sleep routines, drug therapies to
improve sleep and other symptoms, and psychological tools for coping with the
emotional disorders caused by the disease and for reducing stress that can exacerbate
pain. One study compared three treatment options (biofeedback and relaxation
techniques; exercise; and a combination of the other two) with a passive educational
approach used as a control. After two years, the combination approach proved
to be most beneficial and the passive control approach was the least. Another
study also found that interdisciplinary treatment programs were effective in
significantly improving pain in 42% of patients. Improvements in pain and other
symptoms, including depression and sense of physical capability, persisted for
at least six months, although patients tended to become fatigued again. The
effectiveness of the treatments tended to depend on how depressed the patients
were, the sense of their own disability, personal support networks, and if the
cause was unknown. The severity of the pain at the start of treatment had little
to do with outcome. Patients must realize that such therapies are prolonged---in
some cases, lifelong--and they should not be discouraged by relapses. Enlisting
family, partners, and close friends, particularly with exercise and stretching
programs, and becoming involved with support groups of fellow-patients are very
helpful. Patients must have realistic expectations about the long-term outlook
and their own individual capabilities. Improvement is subjective, and some patients
are pleased with only a 10% reduction in pain and other symptoms. It is important
to understand that the condition can be managed and patients can live a full
life.
Exercise
Many studies have
indicated that exercise is the most effective component in managing fibromyalgia,
and patients must expect to undergo a long-term exercise program. Some patients
of fibromyalgia avoid exercise for fear it will exacerbate their pain. However,
according to studies, any pain caused by exercising subsides within 30 minutes.
Physical activity prevents muscle atrophy, increases a sense of well being,
and, over time, reduces fatigue and pain itself.
Aerobic Exercise
. Regular low-impact aerobic exercises are the most helpful for raising
the pain threshold, although it may take months to perceive benefits. A very
gradual incremental program of activity, beginning with mild exercise and building
over time is important; patients who attempt strenuous exercise too early actually
experience an increase in pain and are likely to become discouraged and quit.
Every patient must be prepared for relapse and setbacks, which are nearly universal,
but this should not dissuade the patient from exercising. Rather, they should
experiment with various forms of physical activity that can be tolerated using
their available energy levels. Desirable exercises are walking, swimming, and
using of stationary bikes. Swimming and water therapy, which eliminate weight-bearing,
appear to be excellent choices for getting started.
Some experts recommend
the use of a training index for gauging progress and establishing a goal. This
index is the product of three calculations: the duration of exercise in minutes,
number of days per week that the patient exercises, and the percentage of maximum
heart rate [ see Box ]. People just beginning an exercise program should
start with an index of 10 to 25 and aim over time for at least 42. As examples
for achieving these goals, an initial index of 15 may be achieved with a maximum
heart rate percentage of 60% during exercise performed for 5 minutes 5 times
a week (.60 x 5 x 5); the later goal of an index of 42 could be achieved with
a maximum heart rate percentage of 70% that occurs with 20-minute exercises
three days a week (.70 x 20 x 3 = 42). (Stretching exercises should be performed
for about 10 minutes before aerobic exercise, but they are not considered part
of the total exercise time that the patient uses in calculating the index goal.)
Determining Percentage of
Maximum Heart Rate
1. Determine
the maximum heart rate by subtracting one's age from 220.
2. Determine the heart rate by measuring the pulse either at the carotid
artery on the neck or on the inside of the wrist during a workout. It's
easiest to count pulse beats for 10 seconds, then multiply by six for the
per-minute total.
3. Calculate the percentage of maximum heart rate, by dividing the exercise
heart rate by the maximum heart rate and multiply by 100.
Stretching Techniques . Much of the pain experienced by patients occurs
where muscles join tendons or bones, particularly when the muscles are stretched.
Stretching, or flexibility exercises, are part of the warm-up and cool-down
routines of any regular program, but the stretching technique used for muscle
relaxation and pain reduction must be performed by a person other than the
patient, usually a family member or close friend. One such technique is known
as "spray and stretch". Using this method, the tender points are located by
pressing on the suspected areas, which are then targeted and sprayed with
either ethyl chloride (Chloroethane) or Fluori-Methane, which are chemicals
that cool the blood vessels in the skin. The patient must be in a comfortable
position and the face covered if the spray is being used near the head. The
spray bottle is held upside-down about 12 to 18 inches from the targeted area.
The spray is not used as an anesthetic but to inactivate the tender points
so that the patient's partner can slowly stretch the affected muscle. (Anesthetic
skin creams do not appear to be effective for this treatment.) After the procedure,
the muscle should feel looser, and the patient should have a greater range
of motion with that muscle.
In some cases, injections of lidocaine, called "trigger-point injections",
may be used for particularly painful tender points as an aid to stretching.
The injection causes intense, transient pain in the trigger point, but after
the medication has taken effect, the ability to stretch the muscle is greatly
enhanced. After an injection, the spray may be used on the whole muscle to
inactivate less severe tender points. In some cases, injections may be needed
two or three times over six to eight weeks. There is some soreness afterward,
which can be severe, and the benefits of the treatment may not be apparent
immediately.
With use of either injections or the spray, the benefits may last from a few
days to weeks. Neither the spray nor the injection is useful without muscle
stretching.
Cognitive Therapy
Studies continue
to show that when fibromyalgia patients increase their psychological capacity
to deal with the specific conditions of their disorder and their lives, they
are more apt to experience physical improvement.
Behavioral cognitive therapy is an effective method for enhancing patients'
belief in their own abilities and to develop methods for dealing with stressful
situations. A specific goal of cognitive therapy is to change the distorted
perceptions that patients have of the world and of themselves; for fibromyalgia
patients, this means that they learn to think differently about their pain.
Many fibromyalgia patients live their lives in extremes. They first become heroes
or martyrs, doggedly pushing themselves past the point of endurance until they
collapse and withdraw. This inevitable backlash reverses their self-perception,
and they then view themselves as complete failures, unable to cope with the
simplest task. One important aim of cognitive therapy is to help such patients
discover a middle route, whereby they can prioritize their responsibilities
and drop some of the less important tasks or delegate them to others. Such behavior
will eventually lead to a more manageable life and to less of an absolutist
perspective on themselves and others. Using specific tasks and self-observation,
patients gradually shift their fixed ideas that they are helpless against the
pain that dominates their lives to the perception that pain is only one negative
and, to a degree, a manageable experience among many positive ones. Fulfilling
experiences and many areas of control are still available. Cognitive therapy
may be expensive and not covered by insurance. It should be noted that, in one
center, educational discussion groups were as effective, or even more so, than
a cognitive therapy program. Such results cannot necessarily be applied to all
centers; therapeutic success varies widely depending on the skill of the therapist.
The studies do indicate, however, that patients who cannot afford cognitive
therapy may do as well with strong, intelligently managed support groups [ see
Where Else Can Help Be Found for Fibromyalgia?, below].
Maintaining a Healthy Lifestyle
Establishing Regular
Sleep Routines . Sleep is essential, particularly since pain is aggravated
by disturbed sleep. Improvement is low in those who are unable to sleep consistently
and at night. Swing shift work for example, is extremely hard on fibromyalgia
patients.
Diet. Fibromyalgia
patients should maintain a healthy diet low in animal fat and high in fiber,
with plenty of fresh fruits and vegetables. There is no evidence that any specific
dietary factor is effective in managing fibromyalgia; taken in moderation, vitamins
and most nutritional supplements are probably not harmful, but megadoses of
vitamins and even certain supplements may be toxic.
Stress Reduction Techniques
There is some evidence
that people with fibromyalgia have a more stressful response to daily conflicts
and encounters than those without the disorder. A number of relaxation and stress-reduction
techniques have proven to be helpful in managing chronic pain.
Deep Breathing.
Inhale slowly and deeply to the count of ten, making sure that the stomach
and abdomen expand. Inhale through the nose and exhale slowly and completely,
also to the count of ten. To help quiet the mind, concentrate fully on breathing
and counting through each cycle. Repeat five to ten times and make a habit of
doing the exercise several times each day, even when not feeling stressed.
Progressive Muscle
Relaxation . After lying down in a comfortable position without crossing
the limbs, concentrate on each part of the body, beginning with the top of the
head and progressing downward to focus on all the muscles in the body. Be sure
to include the forehead, ears, eyes, mouth, neck, shoulders, arms and hands,
fingers, chest, belly, thighs, calves and feet. (Some individuals even imagine
tensing and releasing internal muscles once the external review is complete.)
A slow, deep breathing pattern should be maintained throughout this exercise.
Tense each muscle as tightly as possible for a count of five to ten and then
release it completely; experience the muscle as totally relaxed and lead-heavy.
Continue until the feet are reached. In the beginning it is useful to have a
friend or partner check for tension by lifting an arm dropping it; the arm should
fall freely. Practice makes the exercise much more effective and produces relaxation
much more rapidly.
Meditation. Meditation,
used for many years in eastern cultures, is now widely accepted in this country
as an effective relaxation technique. For example, one recent study reported
that patients who performed qigong, an Oriental technique, reported reduced
pain, fatigue, and sleeplessness and improved function, mood, and general health
after eight weeks. The practiced meditater can achieve a reduction in heart
rate, blood pressure, adrenaline levels, and skin temperature while meditating.
A number of organizations, both religious and nonreligious, teach meditation;
the names of these organization along with instructional books can be found
at public libraries. The goal of all meditative procedures, both religious and
therapeutic, is to quiet the mind, essentially to relax thought. The first step
is to be as physically comfortable as possible in a quiet place, preferably
in a semi-dark room isolated from noise or distraction. One should be sitting
up with the eyes closed and concentrating on a simple image or sound. Some methods
suggest imagining a point of light behind the forehead and between the eyes.
Other techniques, such as transcendental mediation, assign "mantras", words
that have particular chanting sounds, which are repeated silently. (Anyone can
make up a word or a sound; the only condition is that the word or sound not
be associated with a real thing, which can distract the meditater from the internal
process.) When the mind begins to wander, the meditater gently brings concentration
back to the central image or sound. Some recommend meditating for no longer
than 20 minutes in the morning after awakening and then again in early evening
before dinner. Even once a day is helpful. When successful, the meditater experiences
deep relaxation and renewed energy. (One should probably not meditate before
going to bed; some people who meditate before sleep wake up in the middle of
the night, alert and unable to return to sleep.)
One technique requiring
little adaptation of the daily schedule has been termed mini-meditation. The
method involves heightening awareness of the immediate surrounding environment.
One should first choose a routine activity when alone. For example, while washing
dishes concentrate on the feel of the water and dishes; allow the mind to wander
to any immediate sensory experience, such as sounds outside the window, smells
from the stove, or colors in the room. If the mind begins to think about the
past or future, abstractions or worries, redirect it gently back. This redirection
of brain activity from thoughts and worries to the senses disrupts the stress
response and prompts relaxation. It also helps promote an emotional and sensual
appreciation of simple pleasures already present in a person's life.
Biofeedback. During
biofeedback, electric leads are taped to a subject's head. The person is encouraged
to relax using methods such as those described above. Brains waves are measured
and an auditory signal is emitted when alpha waves are detected, a frequency
that coincides with a state of deep relaxation. By repeating the process, subjects
associate the sound with the relaxed state and learn to achieve relaxation by
themselves.
Massage Therapy.
Massage therapy is thought to stimulate the parasympathetic nervous system,
which slows down the heart and relaxes the body. Rather than causing drowsiness,
massage actually increases alertness; the reduction of stress and anxiety levels
and the resulting relaxation, however, do contribute to better sleep. A number
of massage therapies are available for relaxing muscles, including the following:
(1) shiatsu, which applies intense pressure to parts of the body, can be painful
but people report deep relaxation at the end; (2) reflexology manipulates hands
and feet using Eastern techniques; (3) Swedish massage has been available for
years and some experts believe is still the best method for relaxation.
Other Procedures
Because of the difficulties
in treating fibromyalgia, many patients seek alternative treatments. Everyone
should be wary of those who promise a cure or urge the purchase of expensive
but useless and potentially dangerous treatment s.
Acupuncture.
Acupuncture may be effective for some patients. One study measured blood levels
of the chemicals serotonin and substance P, which change in response to pain
or its cessation. After acupuncture, the blood levels of these chemicals increased,
which paralleled the reduction in fibromyalgia pain.
Magnet Therapy.
Magnet therapy has received some attention and one study using magnets that
were only slightly more powerful than refrigerator magnets showed some benefits
.
WHAT ARE THE DRUG TREATMENTS FOR
FIBROMYALGIA?
The primary goal
of drug therapy is to improve sleep, but many of the medications may relieve
other symptoms of fibromyalgia, including depression and low energy.
Antidepressants
Tricyclics.
antidepressants known as tricyclics are commonly prescribed for fibromyalgia
patients primarily to reduce sleeplessness and muscle pain; treating depression
is a secondary benefit for those suffering from both depression disorder and
fibromyalgia. The tricyclic drug most commonly used for fibromyalgia is amitriptyline
(Elavil, Endep). Other tricyclics include desipramine (Norpramin), doxepin (Sinequan),
imipramine (Tofranil), amoxapine (Asendin), trazodone (Desyrel), and nortriptyline
(Pamelor, Aventyl). Side effects are fairly common with these medications, although
generally only small doses are necessary for relief of fibromyalgia. Side effects
most often reported include dry mouth, blurred vision, sexual dysfunction, weight
gain, difficulty in urinating, disturbances in heart rhythm, drowsiness, and
dizziness. Blood pressure may drop suddenly when sitting up or standing. Like
all medications, tricyclics must be taken as directed; overdose can be life
threatening.
Selective Serotonin-Reuptake
Inhibitors. Selective serotonin-reuptake inhibitors (SSRIs) are antidepressants
that keep levels of serotonin increased in the brain. Commonly prescribed SSRIs
include fluoxetine (Prozac), sertraline (Zoloft), Paroxetine (Paxil), and Fluvoxamine
(Luvox). Such drugs are often prescribed for fibromyalgia patients who also
suffer from major depression. They do not appear to have any specific benefit
for fibromyalgia itself. One study indicated that a combination of low doses
of Prozac along with the tricyclic Elavil was effective in reducing depression,
improving sleep, and reducing pain, although the added benefits from Prozac
may have only been to increase the potency of Elavil. SSRIs should be taken
in the morning, since they may cause insomnia. Studies are indicating that SSRIs
are generally safe for pregnant women although any medication must be taken
with caution during pregnancy. Patients on SSRIs report a higher level of efficiency,
more energy, and enhanced relationships with other people. Common side effects
are agitation, nausea, and sexual dysfunction, including delayed or loss of
orgasm and low sexual drive. High doses or interactions with other drugs may
cause hallucinations, confusion, changes in blood pressure, stiffness, and irregular
heartbeats. Very serious drug interactions can occur with other older antidepressants,
particularly those known as monoamine oxidase inhibitors.
Cyclobenzaprine
Cyclobenzaprine (Flexeril)
relaxes muscle spasms in specific locations without affecting overall muscle
function. It is related to the tricyclic antidepressants and has similar side
effects, the most common being dry mouth, drowsiness, and dizziness.
Estrogen Therapy
Because fibromyalgia
often develops when a woman reaches menopause, some experts believe that estrogen
replacement therapy may have special benefits for fibromyalgia patients, in
addition to protection against heart disease, osteoporosis, and, possibly, Alzheimer's
disease. Women who take estrogen therapy seem to fall asleep faster, have longer
periods of REM sleep, have fewer wakeful periods, and sleep longer than those
not taking estrogen. Taking estrogen shortly before going to bed is most helpful.
[For more information, see Well-Connected Report #40, Estrogen and
Other Hormone Therapies .]
Pain Relievers
For relief of pain,
acetaminophen (Tylenol) is recommended. Anti-inflammatory drugs, such as corticosteroids
and nonsteroidal anti-inflammatory drugs (NSAIDs), which include aspirin ibuprofen
(Advil), and others, are less useful for the pain of fibromyalgia, since the
pain is not caused by muscle inflammation. A number of patients are prescribed
opioids such as codeine or codeine combinations for pain relief. One study indicated
that many doctors prescribe opioids primarily because of the patients' expressions
of pain not from any objective criteria, such as cause, duration, pain severity,
and physical findings. Physicians are urged to take a careful medical and psychological
profile of the patient before prescribing them and periodically evaluate the
patient for continuing pain relief, side effects, and indications of abuse.
Other Drugs
Among other drugs
used for various symptoms of fibromyalgia are the antianxiety drug alprazolam
(Xanax) and the over-the-counter antihistamine diphenhydramine (Benadryl). Some
treatments being tried for fibromyalgia are experimental and have potentially
toxic side effects and interactions with other drugs. Patients should be sure
to inform their physicians of any other drugs, including so-called natural remedies,
that they are taking. An interesting area of research is the use of very powerful
chemicals, including saporin and a toxin called substance P, that block pain
signals to the brain. In animal studies, this combination was injected into
the spinal cords of rats that were hypersensitive to pain; it relieved pain
without affecting any nearby cells. Some patients have been treated with recombinant
growth hormone and have experienced improvement.
Alternative Remedies
It is extremely important
for patients to realize that any herbal remedy or natural medicine that has
positive effects most likely has negative side effects and toxic reactions,
just as any conventional drug does. Moreover the potential dangers increase
for so-called natural substances no standards exist for safe or effective dosages.
Of particular note is the product Nature's Nutrition Formula One; it includes
the ingredient Ma Huang, which contains the stimulants ephedrine, and kola nut,
which is a caffeine source. Serious adverse reactions, including seizures, psychosis,
and several deaths, have been reported in people taking this supplement. Products
that have only one of these ingredients appear not to have the same effect.
Everyone is strongly advised to consult a physician before using any untested
products. The Food and Drug Administration now has a program called MEDWATCH
for people to report adverse reactions to untested substances, such as herbal
remedies and vitamins (call 800-332-1088).
WHERE ELSE CAN HELP BE FOUND FOR
FIBROMYALGIA?
Fibromyalgia Network,
PO Box 31750, Tucson, AZ 85751-1750. Call (800-853-2929) or on the Internet
(http://www.fmnetnews.com/).
The FM Network offers information on support groups, and health care specialists
by area. Send a self addressed stamped envelope specifying the state you want
information about.
American Fibromyalgia
Syndrome Association, Inc., 6380 E. Tanque Verde Rd., Suite D, Tucson, AZ 85715.
Call (520-733-1570) or on the Internet (http://www.afsafund.org/)
The
Chronic Fatigue and Immune Dysfunction Syndrome Association of America, PO Box
220398, Charlotte, NC 28222-0398. Call (800-44-CFIDS or 3437) or on the Internet
(http://www.cfids.org)
National Chronic
Fatigue Syndrome and Fibromyalgia Association, PO Box 18426, Kansas City, MO
64133. Call (816-313-2000)
This organization is a good source of accurate information on CFS. Send self-address
envelope for information. They will return phone calls using a collect call.
American Association
for Chronic Fatigue Syndrome, c/o Harborview Medical Center, 325 Ninth Avenue,
Box 359780, Seattle, WA 98104. Call (206-521-1932) or on the Internet (http://www.AACFS.org/)
Formed by health professionals to promote dissemination of information on CFS.
The Arthritis Foundation,
1330 West Peachtree Street, Atlanta, Georgia 30309. Call(800-283-7800) or on
the Internet (http://www.arthritis.org/)
National Arthritis
and Musculoskeletal and Skin Diseases, Information Clearinghouse (NAMSIC), NIH,
1 AMS Circle, Bethesda, MD 20892-3675. Call (301-495-4484) or on the Internet
(http://www.nih.gov/niams/)
Tai Chi Chuan Foundation,
5 East 17 Street, New York, NY 10003. Call 212-645-7010)
American Society
of Clinical Hypnosis, 2200 E. Devon Avenue, Suite 291 , Des Plaines, IL 60018-4534
The Society for Clinical
and Experimental Hypnosis, 3905 Vincennes Rd, Suite 304, Indianapolis, IN 46268
RECENT LITERATURE
Fibromyalgia syndrome
in children and adolescents: Clinical features at presentation and status at
follow-up. Pediatrics. March 1998
Magnets Attract new
interest. The Back Letter. March 1998.
Why do doctors prescribe
opioids for chronic pain. BackLetter. April 1998
Pain in children
with juvenile primary fibromyalgia syndrome: Parental pain history and family
environment. Clinical Journal of Pain, 1998 Vol.14.
Psychiatric disorders
in patients with fibromyalgia. Psychosomatics January/February 1999, Vol.40.
Unraveling a mysterious
cause of pain. Johns Hopkins Med Lett Health After 50. 1998 Jun;10(4):3
ABOUT WELL-CONNECTED
Well-Connected reports
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Board of Editors
Harvey Simon, M.D.,
Editor-in-Chief, Massachusetts Institute of Technology; Physician, Massachusetts
General Hospital
Stephen A. Cannistra,
M.D., Oncology, Associate Professor of Medicine, Harvard Medical School; Director,
Gynecologic Medical Oncology, Beth Israel Deaconess Medical Center
Masha J. Etkin, M.D.,
PhD, Gynecology, Harvard Medical School; Physician, Massachusetts General Hospital
John E. Godine, M.D.,
PhD, Metabolism, Harvard Medical School; Associate Physician, Massachusetts
General Hospital
Daniel Heller, M.D.,
Pediatrics, Harvard Medical School; Associate Pediatrician, Massachusetts General
Hospital; Active Staff, Children's Hospital
Paul C. Shellito,
M.D., Surgery, Harvard Medical School; Associate Visiting Surgeon, Massachusetts
General Hospital
Theodore A. Stern,
M.D., Psychiatry, Harvard Medical School; Psychiatrist and Chief, Psychiatric
Consultation Service, Massachusetts General Hospital
Carol Peckham, Editorial
Director
Cynthia Chevins,
Publisher
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