Fibromyalgia
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Fibromyalgia syndrome is a common and chronic disorder characterized
by widespread muscle pain, fatigue, and multiple tender points. The word fibromyalgia
comes from the Latin term for fibrous tissue (fibro)
and the Greek ones for muscle (myo) and pain (algia).
Tender points are specific places on the body--on the neck, shoulders, back,
hips, and upper and lower extremities--where people with fibromyalgia feel
pain in response to slight pressure.
Although fibromyalgia is often considered an
arthritisrelated condition, it is not truly a form of arthritis (a
disease of the joints) because it does not cause inflammation or damage
to the joints, muscles, or other tissues. Like arthritis, however,
fibromyalgia can cause significant pain and fatigue, and it can
interfere with a person's ability to carry on daily activities. Also
like arthritis, fibromyalgia is considered a rheumatic condition.
You may wonder what exactly rheumatic
means. Even physicians do not always agree on whether a disease is considered
rheumatic. If you look up the word in the dictionary, you'll find it comes
from the Greek word rheum, which means flux--not
an explanation that gives you a better understanding. In medicine, however,
the term rheumatic means a medical condition that
impairs the joints and/or soft tissues and causes chronic pain.
In addition to pain and fatigue, people who have
fibromyalgia may experience
- sleep disturbances,
- morning stiffness,
- headaches,
- irritable bowel syndrome,
- painful menstrual periods,
- numbness or tingling of the extremities,
- restless legs syndrome,
- temperature sensitivity,
- cognitive and memory problems (sometimes referred to as
"fibro fog"), or
- a variety of other symptoms.
Fibromyalgia is a syndrome rather than a disease. Unlike a
disease, which is a medical condition with a specific cause or causes
and recognizable signs and symptoms, a syndrome is a collection of
signs, symptoms, and medical problems that tend to occur together but
are not related to a specific, identifiable cause.
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According to a paper published by the American College of
Rheumatology (ACR), fibromyalgia affects 3 to 6 million - or as many as
one in 50 - Americans. For unknown reasons, between 80 and 90 percent of
those diagnosed with fibromyalgia are women; however, men and children
also can be affected. Most people are diagnosed during middle age,
although the symptoms often become present earlier in life.
People with certain rheumatic diseases, such as rheumatoid
arthritis, systemic lupus erythematosus (commonly called lupus), or
ankylosing spondylitis (spinal arthritis) may be more likely to have
fibromyalgia, too.
Several studies indicate that women who have a family member with
fibromyalgia are more likely to have fibromyalgia themselves, but the exact
reason for this--whether it be hereditary or caused by environmental factors
or both--is unknown. One study supported by the National Institute of Arthritis
and Musculoskeletal and Skin Diseases (NIAMS) is trying to identify if certain
genes predispose some people to fibromyalgia.
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The causes of fibromyalgia are unknown, but there are
probably a number of factors involved. Many people associate the
development of fibromyalgia with a physically or emotionally stressful
or traumatic event, such as an automobile4 accident. Some connect it to
repetitive injuries. Others link it to an illness. People with
rheumatoid arthritis and other autoimmune diseases, such as lupus, are
particularly likely to develop fibromyalgia. For others, fibromyalgia
seems to occur spontaneously.
Many researchers are examining other causes, including
problems with how the central nervous system (the brain and spinal cord)
processes pain.
Some scientists speculate that a person's genes may
regulate the way his or her body processes painful stimuli. According to
this theory, people with fibromyalgia may have a gene or genes that
cause them to react strongly to stimuli that most people would not
perceive as painful. However, those genes--if they, in fact, exist--have
not been identified.
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Research shows that people with fibromyalgia typically see
many doctors before receiving the diagnosis. One reason for this may be
that pain and fatigue, the main symptoms of fibromyalgia, overlap with
many other conditions. Therefore, doctors often have to rule out other
potential causes of these symptoms before making a diagnosis of
fibromyalgia. Another reason is that there are currently no diagnostic
laboratory tests for fibromyalgia; standard laboratory tests fail to
reveal a physiologic reason for pain. Because there is no generally
accepted, objective test for fibromyalgia, some doctors unfortunately
may conclude a patient's pain is not real, or they may tell the patient
there is little they can do.
A doctor familiar with fibromyalgia, however, can make a
diagnosis based on two criteria established by the ACR: a history of
widespread pain lasting more than 3 months and the presence of tender
points. Pain is considered to be widespread when it affects all four
quadrants of the body; that is, you must have pain in both your right
and left sides as well as above and below the waist to be diagnosed with
fibromyalgia. The ACR also has designated 18 sites on the body as
possible tender points. For a fibromyalgia diagnosis, a person must have
11 or more tender points. (See illustration on page 5.) One of these
predesignated sites is considered a true tender point only if the person
feels pain upon the application of 4 kilograms of pressure to the site.
People who have fibromyalgia certainly may feel pain at other sites,
too, but those 18 standard possible sites on the body are the criteria
used for classification.
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Fibromyalgia can be difficult to treat. Not all doctors
are familiar with fibromyalgia and its treatment, so it is important to
find a doctor who is. Many family physicians, general internists, or
rheumatologists (doctors who specialize in arthritis and other
conditions that affect the joints or soft tissues) can treat
fibromyalgia.
Fibromyalgia treatment often requires a team approach,
with your doctor, a physical therapist, possibly other health
professionals, and most importantly, yourself, all playing an active
role. It can be hard to assemble this team, and you may struggle to find
the right professionals to treat you. When you do, however, the combined
expertise of these various professionals can help you improve your
quality of life.
You may find several members of the treatment team you
need at a clinic. There are pain clinics that specialize in pain and
rheumatology clinics that specialize in arthritis and other rheumatic
diseases, including fibromyalgia.
At present, there are no medications approved by the U.S.
Food and Drug Administration (FDA) for treating fibromyalgia, although a
few such drugs are in development. Doctors treat fibromyalgia with a
variety of medications developed and approved for other purposes.
Following are some of the most commonly used categories of
drugs for fibromyalgia:
Analgesics
Analgesics are painkillers. They range from
over-the-counter acetaminophen (Tylenol*) to prescription medicines,
such as tramadol (Ultram), and even stronger narcotic preparations. For
a subset of people with fibromyalgia, narcotic medications are
prescribed for severe muscle pain. However, there is no solid evidence
showing that narcotics actually work to treat the chronic pain of
fibromyalgia, and most doctors hesitate to prescribe them for long-term
use because of the potential that the person taking them will become
physically or psychologically dependent on them.
* Brand names included in this booklet are
provided as examples only, and their inclusion does not mean that these
products are endorsed by the National Institutes of Health or any other
Government agency. Also, if a particular brand name is not mentioned,
this does not mean or imply that the product is
unsatisfactory.
Nonsteroidal Anti-Inflammatory Drugs (NSAIDs)
As their name implies, nonsteroidal anti-inflammatory
drugs, including aspirin, ibuprofen (Advil, Motrin), and naproxen sodium
(Anaprox, Aleve), are used to treat inflammation. Although inflammation
is not a symptom of fibromyalgia, NSAIDs also relieve pain. The drugs
work by inhibiting substances in the body called prostaglandins, which
play a role in pain and inflammation. These medications, some of which
are available without a prescription, may help ease the muscle aches of
fibromyalgia. They may also relieve menstrual cramps and the headaches
often associated with fibromyalgia.
Antidepressants
Perhaps the most useful medications for fibromyalgia are
several in the antidepressant class. Antidepressants elevate the levels
of certain chemicals in the brain, including serotonin and
norepinephrine (which was formerly called adrenaline). Low levels of
these chemicals are associated not only with depression, but also with
pain and fatigue. Increasing the levels of these chemicals can reduce
pain in people who have fibromyalgia. Doctors prescribe several types of
antidepressants for people with fibromyalgia, described below.
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Tricyclic antidepressants--When taken at bedtime
in dosages lower than those used to treat depression, tricyclic
antidepressants can help promote restorative sleep in people with
fibromyalgia. They also can relax painful muscles and heighten the
effects of the body's natural pain-killing substances called
endorphins.
Tricyclic antidepressants have been around for almost half a
century. Some examples of tricyclic medications used to treat
fibromyalgia include amitriptyline hydrochloride (Elavil, Endep),
cyclobenzaprine (Cycloflex, Flexeril, Flexiban), doxepin (Adapin,
Sinequan), and nortriptyline (Aventyl, Pamelor). Both amitriptyline
and cyclobenzaprine have been proved useful for the treatment of
fibromyalgia.
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Selective serotonin reuptake inhibitors--If a
tricyclic antidepressant fails to bring relief, doctors sometimes
prescribe a newer type of antidepressant called a selective serotonin
reuptake inhibitor (SSRI). As with tricyclics, doctors usually
prescribe these for people with fibromyalgia in lower dosages than are
used to treat depression. By promoting the release of serotonin, these
drugs may reduce fatigue and some other symptoms associated with
fibromyalgia. The group of SSRIs includes fluoxetine (Prozac),
paroxetine (Paxil), and sertraline (Zoloft).
SSRIs may be prescribed along with a tricyclic antidepressant.
Doctors rarely prescribe SSRIs alone. Because they make people feel
more energetic, they also interfere with sleep, which often is already
a problem for people with fibromyalgia. Studies have shown that a
combination therapy of the tricyclic amitriptyline and the SSRI
fluoxetine resulted in greater improvements in the study participants'
fibromyalgia symptoms than either drug alone.
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Mixed reuptake inhibitors--Some newer
antidepressants raise levels of both serotonin and norepinephrine, and
are therefore called mixed reuptake inhibitors. Examples of these
medications include venlafaxine (Effexor) and nefazadone (Serzone).
Researchers are actively studying the efficacy of these newer
medications in treating fibromyalgia.
Benzodiazepines
Benzodiazepines help some people with fibromyalgia by
relaxing tense, painful muscles and stabilizing the erratic brain waves
that can interfere with deep sleep. Benzodiazepines also can relieve the
symptoms of restless legs syndrome, which is common among people with
fibromyalgia. Restless legs syndrome is characterized by unpleasant
sensations in the legs as well as twitching, particularly at night.
Because of the potential for addiction, doctors usually prescribe
benzodiazepines only for people who have not responded to other
therapies. Benzodiazepines include clonazepam (Klonopin) and diazepam
(Valium).
Other medications
In addition to the previously described general categories of
drugs, doctors may prescribe others, depending on a person's specific symptoms
or fibromyalgia-related conditions. For example, in recent years, two medications--
tegaserod (Zelnorm) and alosetron (Lotronex) - have been approved by the FDA
for the treatment of irritable bowel syndrome. Gabapentin (Neurontin) currently
is being studied as a treatment for fibromyalgia. Other symptom-specific medications
include sleep medications, muscle relaxants, and headache remedies.
People with fibromyalgia also may benefit from a
combination of physical and occupational therapy, from learning
pain-management and coping techniques, and from properly balancing rest
and activity.
Complementary and alternative therapies
Many people with fibromyalgia also report varying degrees of success
with complementary and alternative therapies, including massage, movement
therapies (such as Pilates and the Feldenkrais method), chiropractic treatments,
acupuncture, and various herbs and dietary supplements for different fibromyalgia
symptoms.
Though some of these supplements are being studied for
fibromyalgia, there is little, if any, scientific proof yet that they
help. The FDA does not regulate the sale of dietary supplements, so
information about side effects, the proper 12 dosage, and the amount of
a preparation's active ingredient may not be well known. If you are
using or would like to try a complementary or alternative therapy, you
should first speak with your doctor, who may know more about the
therapy's effectiveness, as well as whether it is safe to try in
combination with your medications.
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Fibromyalgia is a chronic condition, meaning it lasts a
long time - possibly a lifetime. However, it may comfort you to know
that fibromyalgia is not a progressive disease. It is never fatal, and
it won't cause damage to your joints, muscles, or internal organs. In
many people, the condition does improve over time.
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Besides taking medicine prescribed by your doctor, there
are many things you can do to minimize the impact of fibromyalgia on
your life. These include:
- Getting enough sleep--Getting enough sleep
and the right kind of sleep can help ease the pain and fatigue of fibromyalgia.
Even so, many people with fibromyalgia have problems such as pain, restless
legs syndrome, or brain-wave irregularities that interfere with restful
sleep.
- Exercising--Though pain and fatigue may make
exercise and daily activities difficult, it's crucial to be as physically
active as possible. Research has repeatedly shown that regular exercise
is one of the most effective treatments for fibromyalgia. People who have
too much pain or fatigue to do vigorous exercise should begin with walking
or other gentle exercise and build their endurance and intensity slowly.
Although research has focused largely on the benefits of aerobic and flexibility
exercises, a new NIAMS-supported study is examining the effects of adding
strength training to the traditionally prescribed aerobic and flexibility
exercises.
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Making changes at work--Most people with fibromyalgia
continue to work, but they may have to make big changes to do so; for
example, some people cut down the number of hours they work, switch to
a less demanding job, or adapt a current job. If you face obstacles at
work, such as an uncomfortable desk chair that leaves your back aching
or difficulty lifting heavy boxes or files, your employer may make adaptations
that will enable you to keep your job. An occupational therapist can help
you design a more comfortable workstation or find more efficient and less
painful ways to lift.
If you are unable to work at all due to a medical condition, you may
qualify for disability benefits through your employer or the Federal Government.
Social Security Disability Insurance (SSDI) and Supplemental Security
Insurance (SSI) are the largest Federal programs providing financial assistance
to people with disabilities. Though the medical requirements for eligibility
are the same under the two programs, the way they are funded is different.
SSDI is paid by Social Security taxes, and those who qualify for assistance
receive benefits based on how much an employee has paid into the system;
SSI is funded by general tax revenues, and those who qualify receive payments
based on financial need. For information about the SSDI and SSI programs,
contact the Social Security Administration.
- Eating well--Although some people with fibromyalgia
report feeling better when they eat or avoid certain foods, no specific
diet has been proven to influence fibromyalgia. Of course, it is important
to have a healthy, balanced diet. Not only will proper nutrition give you
more energy and make you generally feel better, it will also help you avoid
other health problems.
Tips for Good Sleep
- Keep regular sleep habits. Try to get to bed at the same
time and get up at the same time every day--even on weekends and vacations.
- Avoid caffeine and alcohol in the late afternoon and evening.
If consumed too close to bedtime, the caffeine in coffee, soft drinks,
chocolate, and some medications can keep you from sleeping or sleeping
soundly. Even though it can make you feel sleepy, drinking alcohol around
bedtime also can disturb sleep.
- Time your exercise. Regular daytime exercise can improve
nighttime sleep. But avoid exercising within 3 hours of bedtime, which
actually can be stimulating, keeping you awake.
- Avoid daytime naps. Sleeping in the afternoon can interfere
with nighttime sleep. If you feel you can't get by without a nap, set
an alarm for 1 hour. When it goes off, get up and start moving.
- Reserve your bed for sleeping. Watching the late news, reading
a suspense novel, or working on your laptop in bed can stimulate you,
making it hard to sleep.
- Keep your bedroom dark, quiet, and cool.
- Avoid liquids and spicy meals before bed. Heartburn and latenight
trips to the bathroom are not conducive to good sleep.
- Wind down before bed. Avoid working right up to bedtime.
Do relaxing activities, such as listening to soft music or taking a warm
bath, that get you ready to sleep. (An added benefit of the warm bath:
It may soothe aching muscles.)
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The NIAMS sponsors research that will improve scientists'
understanding of the specific problems that cause or 16 accompany
fibromyalgia, in turn helping them develop better ways to diagnose,
treat, and prevent this syndrome.
The research on fibromyalgia supported by NIAMS covers a
broad spectrum, ranging from basic laboratory research to studies of
medications and interventions designed to encourage behaviors that
reduce pain and change behaviors that worsen or perpetuate pain.
Following are descriptions of some of the promising
research now being conducted:
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Understanding pain--Because research suggests that
fibromyalgia is caused by a problem in how the body processes pain--or
more precisely, a hypersensitivity to stimuli that normally are not
painful--several NIAMS-supported researchers are focusing on ways the
body processes pain to better understand why people with fibromyalgia
have increased pain sensitivity.
Previous research has shown that people with fibromyalgia have
reduced blood flow to parts of the brain that normally help the body
deal with pain. In one new NIAMS-funded study, researchers will be
using imaging technology called positron emission tomography (PET) to
compare blood flow in the brains of women who have have fibromyalgia
with those who do not. In both groups, researchers will study changes
in blood flow that occur in response to painful stimuli.
Researchers speculate that female reproductive hormones may be
involved in the increased sensitivity to pain characteristic of
fibromyalgia. New research will examine the role of sex hormones in
pain sensitivity, in reaction to stress, and in symptom perception at
various points in the menstrual cycles of women with fibromyalgia and
of women without it. The results from studying these groups of women
will be compared with results from studies of the same factors in men
without fibromyalgia over an equivalent period of time.
Another line of NIAMS-funded research involves developing a rodent
model of fibromyalgia pain. Rodent models, which use mice or rats that
researchers cause to develop symptoms similar to fibromyalgia in
humans, could provide the basis for future research into this complex
condition.
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Understanding stress--Medical evidence suggests
that a problem or problems in the way the body responds to physical
and/or emotional stress may trigger or worsen the symptoms of any
illness, including fibromyalgia. Researchers funded by NIAMS are
trying to uncover and understand these problems by examining chemical
interactions between the nervous system and the endocrine (hormonal)
system. Scientists know that people whose bodies make inadequate
amounts of the hormone cortisol experience many of the same symptoms
as people with fibromyalgia, so they also are exploring if there is a
link between the regulation of the adrenal glands, which produce
cortisol, and fibromyalgia.
Another NIAMS-funded study suggests that exercise improves the
body's response to stress by enhancing the function of the pituitary
and adrenal glands. The hormones produced by these two endocrine
glands are essential to regulating sleep and emotions, as well as
processing pain.
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Improving sleep--Researchers supported by NIAMS
are investigating ways to improve sleep for people with fibromyalgia
whose sleep problems persist despite treatment with medications. One
team has observed that fibromyalgia patients with persistent sleep
problems share characteristics with people who have insomnia, such as
having erratic sleep and wake schedules and spending too much time in
bed. This team is testing whether strategies developed to help
insomnia patients will also help people with fibromyalgia achieve deep
sleep, which eases pain and fatigue. Preliminary results show that
sleep education, which teaches good sleep habits, and cognitive
behavioral therapy, which includes sleep education and a regimen to
correct poor habits and improper sleep schedules, both reduce
insomnia.
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Looking for the family connection--Because
fibromyalgia appears to run in families, one group of NIAMS-supported
researchers is working to identify whether a gene or genes predispose
people to the condition.
Another team is trying to determine if fibromyalgia is more common
in people with other conditions, such as serious mood disorders, that
tend to run in families. Specifically, the group is studying the
prevalence of psychiatric disorders and arthritis and related
disorders in people with fibromyalgia and their first-degree relatives
(parents, children, sisters, brothers) as compared to people with
rheumatoid arthritis and their relatives. The group is exploring
whether clusters of conditions exist in families, which might shed
light on shared common risk factors or disease processes.
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Studying and targeting
treatments--NIAMS recently funded its first study of a drug
treatment for fibromyalgia. The study will measure the effectiveness
of gabapentin, an anticonvulsant medication, in reducing symptoms of
fibromyalgia. Gabapentin has been found to relieve chronic pain caused
by nervous system disorders, and it was recently approved by the FDA
for the treatment of persistent, severe pain that can follow an
episode of shingles.
Scientists recognize that people with fibromyalgia often fall into
distinct subgroups that adapt to and cope with their symptoms
differently. They also realize that these subgroups may respond to
treatments differently. One NIAMS-funded team of researchers has
divided people with fibromyalgia into three groups based on how they
cope with the condition. Relative to other chronic pain patients,
those in the first group have higher levels of pain and report more
interference in their life due to pain. They also have higher levels
of emotional distress, and feel less control over their lives and are
less active. The second group reports receiving less support from
others, higher levels of negative responses from significant others,
and lower levels of supportive responses from significant others.
Those in the third group are considered adaptive copers; they have
less pain, report less interference in their lives due to pain, and
have less emotional distress. Members of this last group feel more
control over their lives and are more active. On the premise that the
better you understand the subgroups, the better you can tailor
treatments to fit them, the researchers now are trying to design and
test different programs for each group, combining physical therapy,
interpersonal skills training, and supportive
counseling.
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National Institute of
Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Center for Complementary
and Alternative Medicine
Social Security Administration
Advocates for Fibromyalgia
Funding, Treatment, Education, and Research
National Fibromyalgia
Partnership
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Adrenal glands--A pair of endocrine glands
located on the surface of the kidneys. The adrenal glands produce corticosteroid
hormones such as cortisol, aldosterone, and the reproductive hormones.
Arthritis--Literally means joint inflammation,
but is often used to indicate a group of more than 100 rheumatic diseases.
These diseases affect not only the joints but also other connective tissues
of the body, including important supporting structures, such as muscles,
tendons, and ligaments, as well as the protective covering of internal organs.
Analgesic--A medication or treatment that relieves
pain.
Connective tissue--The supporting framework
of the body and its internal organs.
Chronic disease--An illness that lasts for
a long time, often a lifetime.
Cortisol--A hormone produced by the adrenal
cortex, important for normal carbohydrate metabolism and for a healthy response
to stress.
Fibrous capsule--A tough wrapping of tendons
and ligaments that surrounds the joint.
Fibromyalgia--A chronic syndrome that causes
pain and stiffness throughout the connective tissues that support and move
the bones and joints. Pain and localized tender points occur in the muscles,
particularly those that support the neck, spine, shoulders, and hip. The
disorder includes widespread pain, fatigue, and sleep disturbances.
Inflammation--A characteristic reaction of
tissues to injury or disease. It is marked by four signs: swelling, redness,
heat, and pain. Inflammation is not a symptom of fibromyalgia.
Joint--A junction where two bones meet. Most
joints are composed of cartilage, joint space, fibrous capsule, synovium,
and ligaments.
Ligaments--Bands of cordlike tissue that connect
bone to bone.
Muscle--A structure composed of bundles of
specialized cells that, when stimulated by nerve impulses, contract and
produce movement.
Nonsteroidal anti-inflammatory drugs (NSAIDs)--A
group of drugs, such as aspirin and aspirin-like drugs, used to reduce inflammation
that causes joint pain, stiffness, and swelling.
Pituitary gland--A pea-sized gland attached
beneath the hypothalamus at the base of the skull that secretes many hormones
essential to bodily functioning. The secretion of pituitary hormones is
regulated by chemicals produced in the hypothalamus.
Sleep disorder--A disorder in which a person
has difficulty achieving restful, restorative sleep. In addition to other
symptoms, people with fibromyalgia usually have a sleep disorder.
Tender points--Specific places on the body
where a person with fibromyalgia feels pain in response to slight pressure.
Tendons--Fibrous cords that connect muscle
to bone.
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