English Language Edition, 2001
Fibromyalgia symptoms,
diagnosis, treatment, and research
A National Fibromyalgia Partnership Publication
* * *
* *
© Copyright 2001,
National Fibromyalgia Partnership, Inc. (NFP)
140 Zinn Way, Linden, Virginia 22642-5609 USA. Website:
www.fmpartnership.org
This document may be photocopied and distributed in its entirety
for educational purposes without permission. It may not be reprinted in any
publication or on any website or other electronic media.
The FM Monograph is provided for informational and educational purposes only, and no endorsement of any treatment program is intended or implied. For your own protection, always consult a medical professional before starting a new treatment.
What Is Fibromyalgia?
Fibromyalgia
(or "FM" for short) is a complex, chronic condition which causes
widespread pain and fatigue as well as a variety of other symptoms. The name
fibromyalgia comes from "fibro" meaning fibrous tissues (such as
tendons and ligaments), "my" meaning muscles, and "algia"
meaning pain. Unlike arthritis, FM does not cause pain or swelling in the
joints. Rather, it produces pain in the soft tissues located around joints and
in skin and organs throughout the body.
Because FM has few symptoms that are outwardly visible, it has been
nicknamed "the invisible disability" or the "irritable
everything" syndrome.
The pain of FM usually consists of diffuse aching or burning described as "head-to-toe", and it is often accompanied by muscle spasm. Pain can vary in severity from day to day and change location, becoming more severe in parts of the body that are used the most (i.e., neck, shoulders, and feet). In some people, it can be so intense that it interferes with the performance of even simple tasks, while in others it may cause only moderate discomfort. Likewise, the fatigue of FM also varies from person to person ranging from a mild, tired feeling to the exhaustion of a flu-like illness. FM is not physically crippling nor does it interfere with a person's expected life span.
Although the
exact prevalence of FM in the U.S. population has not been thoroughly studied,
conservative estimates place the total between 4 and 6 million. Other experts
believe the true number is closer to 10 million.1 An estimated 80%
of sufferers are women, most of them working age, so FM has obvious
consequences in terms of employment and family stress. FM also occurs in all
other age groups as well as in men, and it exists in all races worldwide.
Symptoms/Syndromes Associated With FM
In addition
to pain and fatigue, a number of symptoms/syndromes are usually associated with
FM. Like pain/fatigue, their severity may wax and wane over time, and
individuals may differ in the extent to which they are troubled by them.
Typically, patients suffer from one or more of the following:
Stiffness:
Body stiffness is usually most apparent upon awakening and after
prolonged periods of sitting or standing in one position. It may also coincide
with changes in relative humidity.
Increased
Headaches Or Facial Pain:
Head/facial pain is frequently a result of extremely stiff or tender
neck/shoulder muscles which refer pain upwards. It can also accompany temporomandibular
joint (TMJ)
dysfunction, a condition which occurs in an estimated one-third of those with
FM and which affects the jaw joints and surrounding muscles.
Sleep
Disturbances: Despite
sufficient amounts of sleep, FM patients may awaken feeling unrefreshed, as if
they have barely slept. Alternatively, they often have trouble falling asleep
or staying asleep. The reasons for the non-restorative sleep and other sleep
difficulties of fibromyalgia are unknown although early FM research in sleep
labs documented disruptions in the deep (delta) sleep of some patients.
Cognitive
Disorders: Those with
FM report a number of cognitive symptoms which tend to vary from day to day.
These include difficulty concentrating, "spaciness" or
"fibro-fog", memory lapses, difficulty thinking of words/names, and
feeling overwhelmed when engaged in multiple tasks.
Gastrointestinal
Complaints: Digestive
disturbances, abdominal pain, and bloating are quite common with FM as are
constipation and/or diarrhea. Together these symptoms are usually known as
"irritable bowel syndrome" or IBS. FM patients may also have
difficulty swallowing food. Researchers think this may be a result of
abnormalities in smooth muscle functioning in the esophagus.2
Genito-Urinary
Problems: FM patients
may experience increased frequency of urination or increased urgency to
urinate, typically in the absence of a bladder infection. Some may develop a
chronic, painful inflammatory condition of the bladder wall known as
"interstitial cystitis" (IC). Women with FM may have more painful
menstrual periods or experience a worsening of their FM symptoms during this
time. Conditions such as vulvar vestibulitis or vulvodynia, characterized by a
painful vulvar region and painful sexual intercourse, may also develop in
women.
Paresthesia:
Numbness or tingling,
particularly in the hands or feet, sometimes accompanies FM. Also known as
"paresthesia", the sensation can be described as prickling or
burning.
Myofascial
Trigger Points: A
significant number of people with FM have a neuromuscular condition known as
"myofascial pain syndrome (MPS)" in which very painful spots (trigger
points) form in taut bands in muscles or other connective tissue, often as a
result of repetitive motion injury, prolonged poor posture, or illness. Not
only are these spots very painful but they also refer pain to other parts of
the body in very predictable ways. Unlike FM which affects the entire body, MPS
is a localized condition which occurs in very specific areas, typically the
neck, shoulders, or lower back. TMJ is considered a form of MPS.
Chest Symptoms: Individuals with FM who engage in activities involving continuous,
forward body posture (i.e., typing, sitting at a desk, working on an assembly
line, etc.) often have special problems with chest and upper body (thoracic)
pain and dysfunction.3 The
pain may cause shallow breathing and postural problems. They may also develop a
condition known as costochondralgia (also referred to as costochondritis) which
causes muscle pain where the ribs meet the chest bone and is frequently
mistaken for heart disease. Persons with FM are also prone to a largely
asymptomatic heart condition known as mitral valve prolapse (MVP) in which one
of the valves of the heart bulges during a heartbeat causing a click or murmur.
MVP usually does not cause much concern unless another cardiac condition is
also present. (Note: Anyone experiencing chest pain should immediately consult
a physician.)
Dysequilibrium: FM patients may be troubled by
light-headedness and/or balance problems for a variety of reasons. Since
fibromyalgia is thought to affect the skeletal tracking muscles of the
eyes, "visual confusion" and nausea may be experienced when driving a
car, reading a book, or otherwise tracking objects. (Difficulties with smooth
muscles in the eye may also cause additional problems with focus.)4
Alternatively, weak muscles and/or trigger points in the neck or TMJ
dysfunction may cause dizziness or dysequilibrium. Researchers at Johns Hopkins
Medical Center have also shown that some FM patients have a condition known as
"neurally mediated hypotension" which causes a drop in blood pressure
and heart rate upon standing with resulting light-headedness, nausea, and
difficulty thinking clearly.5
Leg
Sensations: Some FM
patients may develop a neurologic disorder known as "restless legs
syndrome" (RLS) which involves a "creepy crawly" sensation in
the legs and an irresistible urge to move the legs particularly when at rest or
when lying down. One recent study suggests that as many as 31% of FM patients
may have RLS.6 The syndrome
may also involve periodic limb movements during sleep (PLMS) which can be very
disruptive to both the patient and to her/his sleeping partner.
Sensory
Sensitivity/Allergic Symptoms: Hypersensitivity to
light, sound, touch, and odors frequently occurs among those with FM and is
thought to be a result of a hyperactive
nervous system. In addition, persons with FM may feel chilled or cold when
others around them are comfortable, or they may feel excessively warm. They may
also have allergic-like reactions to a variety of substances accompanied by
itching or a rash or a form of non-allergic rhinitis consisting of nasal
congestion/discharge and sinus pain. However, when such symptoms occur, there
is usually no measurable immune system response like that found in true
allergies.7
Skin
Complaints: Nagging
symptoms, such as itchy, dry, or blotchy skin, may accompany FM. Dryness of the
eyes and mouth is also not uncommon. Additionally, fibromyalgia patients may
experience a sensation of swelling, particularly in extremities (i.e.,
fingers). A common complaint is that a ring no longer fits. However, such
swelling is not like the joint inflammation of arthritis; rather, it is a
localized anomaly of FM of unknown cause.
Depression
And Anxiety: Although FM
patients are frequently misdiagnosed with depression or anxiety disorders
("it's all in your head"), research has repeatedly shown that
fibromyalgia is not a form of depression or hypochondriasis. Where depression
or anxiety do co-exist with fibromyalgia, treatment is important as both can
exacerbate FM and interfere with successful symptom management.
Official Diagnostic Criteria
Fibromyalgia
has had a long, if rather obscure, history as an illness. Masquerading behind
numerous medical aliases, FM has existed throughout history and throughout the
world. It was only in 1990 that official diagnostic criteria for FM were
established by the American College of Rheumatology (ACR).8 They
include:
(1) A
History of Widespread Pain:
Chronic, widespread, musculoskeletal pain lasting longer than three months in
all four quadrants of the body. ("Widespread pain" is defined as pain
above and below the waist and on both sides of the body.) In addition, axial
skeletal pain (in the cervical spine, anterior chest, thoracic spine, or low back)
must be present.
(2) Pain in
11 of 18 Tender Point Sites on Digital Palpation:
There are 18 tender points that doctors look for in making a
fibromyalgia diagnosis (see Figure 1). According to the ACR requirements, a
patient must have 11 of the 18 to be diagnosed with fibromyalgia. Approximately
four kilograms of pressure (or about 9 lbs.) must be applied to a tender point,
and the patient must indicate that the tender point locations are painful
Figure 1: Fibromyalgia Tender Points Identified By
The American College Of Rheumatology in 1990
(at digital palpation with an approximate
force of 4 kg)
(1 & 2) Occiput:
bilateral, at the sub-occipital muscle insertions.
(3 & 4) Low
Cervical: bilateral, at the
anterior aspects of the inter-transverse spaces at C5-C7.
(5 & 6) Trapezius: bilateral, at the midpoint of the upper
border.
(7 & 8) Supraspinatus: bilateral, at origins, above the scapula
spine near the medial border.
(9 & 10) Second Rib:
bilateral, at the second costochondral junctions, just lateral to the
junctions on upper surfaces.
(11 & 12) Lateral
Epicondyle: bilateral, 2 cm
distal to the epicondyles.
(13 & 14) Gluteal: bilateral, in upper outer quadrants of buttocks in anterior fold
of muscle.
(15 & 16) Greater Trochanter: bilateral, posterior to
the trochanteric prominence.
(17 & 18) Knee:
bilateral, at the medial fat pad proximal to the joint line.
(Source: Frederick Wolfe, M.D., et al., "The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia: Report of a Multicenter Criteria Committee," Arthritis & Rheumatism, Vol. 33, No. 2, February 1990, pp. 160-172.)
As the ACR
criteria suggest, a fibromyalgia diagnosis requires the "hands-on"
evaluation of a patient by a skilled medical professional, typically a
rheumatologist, though other medical specialists are becoming very
knowledgeable in this area. As patients are not usually aware of the specific
anatomical origins of pain in their bodies, self-diagnosis is not advised.
Because routine laboratory and x-ray testing is usually normal in fibromyalgia
patients, a complete medical history and physical exam are crucial for a
correct diagnosis. Since FM symptoms mimic several other diseases (for example,
systemic lupus, polymyalgia rheumatica, myositis/polymyositis, thyroid disease,
rheumatoid arthritis, multiple sclerosis, and others), it is necessary to rule
out those conditions before a FM diagnosis is made. While a diagnosis of
fibromyalgia does not preclude the co-existence of another condition, it is
important to ensure that no other condition is mistaken for fibromyalgia so
that appropriate treatment may be initiated.
Limitations of the ACR Diagnostic Criteria
In the
absence of diagnostic laboratory tests or x-rays, the ACR diagnostic criteria
were a milestone in the recognition and study of fibromyalgia. For the first
time, researchers around the world could identify and study FM patients using
standardized measures. Patients who had fallen through the cracks of medical
science could finally be diagnosed. Nevertheless, the criteria were not without
their drawbacks.9
First, the
tender point paradigm suggested that FM patients only experience pain in
anatomically specific sites on the body. However, later studies, such as those
reported by Granges and Littlejohn in 1993,10 began suggesting that
individuals with FM are sensitive to painful stimuli throughout the body, not
merely at the ACR-identified locations. Today, extensive body pain is commonly
associated with FM.
Secondly, it
quickly became evident that patient tenderness varied day-by-day and
month-by-month. As a result, tender point counts on some days could be below
the required 11 while on other days they might surpass it. Furthermore,
patients did not always manifest pain in all four body quadrants. Some had
unilateral pain; others had pain solely in the upper or lower halves of the
body.
Thirdly, the
tender point exams conducted by medical professionals are subject to human
error. When performed incorrectly (at the wrong anatomical point or with an
incorrect amount of digital palpation), they yield erroneous results.
Unfortunately, the tender points of fibromyalgia are also sometimes confused
with the trigger points of myofascial pain syndrome. Not uncommonly, FM is
mistaken for MPS and vice versa. The search continues for a foolproof
laboratory marker for FM. Meanwhile, the ACR criteria are still the most widely
used diagnostic tool for fibromyalgia.
What Causes Fibromyalgia?
Although the
cause of fibromyalgia is not currently known, research has already uncovered
significant clues. For example, it is known that FM often develops after a
physical trauma (i.e., an accident,
injury, or severe illness) which appears to act as a trigger in predisposed
individuals. Such a trauma may affect the brain and central nervous system
which in turn produce the condition that we know as fibromyalgia. During 1997,
a team of investigators led by Israeli researcher Dan Buskila, M.D., reported
on a study of the relationship between cervical spine injuries and the onset of
fibromyalgia which found that FM was 13 times more likely to occur following a
neck injury than an injury to the lower extremities.11 New research by Stuart Donaldson, Ph.D.;
Mary Lee Esty, Ph.D.; and Len Ochs, Ph.D., suggests that FM may actually be a
"CNS Myalgia" (central nervous system myalgia) caused by a traumatic brain injury which results in
abnormalities in the functioning of the brain and central nervous system.12
Not all
cases of FM can be considered post-traumatic FM, as frequently no apparent
"trigger" can be identified. For this reason, researchers continue to
explore a number of avenues which might explain what causes fibromyalgia. There
is already evidence of a strong familial pattern in many cases of FM, with
fibromyalgia often following the female side of the family. Exciting new
genetic studies are now underway to investigate genetics and fibromyalgia.13
Additionally, current research by neurosurgeon Michael Rosner, M.D., and others
is examining the extent to which FM patients suffer from Chiari malformation
and cervical spinal stenosis, conditions which may be responsible for the
symptoms experienced by a subset of FM patients. Still other investigators
believe that fibromyalgia is caused by an infectious microorganism, such as a
virus or mycoplasma.14
Once,
researchers believed that something must be wrong with the muscles of FM
patients because they seemed to be the origin of so much pain and dysfunction.
In fact, FM's former name, "fibrositis", literally meant inflammation
of the muscles and soft tissue. However, later studies ultimately found no
inflammation or nerve injury. Today, researchers generally concur that FM is a
condition which is centrally mediated by the brain and not a disease of the periphery.
Increasingly, they have identified abnormalities in the levels of various
neurochemicals in the brain. Perhaps best known is the study by I. Jon Russell,
M.D., Ph.D., of the University of Texas Health Science Center in San Antonio,
which demonstrated that the brain neurochemical Substance P, the agent which
signals the brain to register pain, exists in FM patients at a level that is
three times higher than in normal controls.15 Also of interest is why the neurotransmitter
serotonin, which modifies the intensity of pain signals entering the brain,
appears to be deficient in patients with FM. Many of the medications currently
used to treat fibromyalgia work to counteract this deficit. As it becomes
increasingly clear that there are significant abnormalities in pain processing
in fibromyalgia, researchers are trying to determine whether the problem is an
exaggerated brain/body reaction to basically normal stimuli (allodynia) or a
magnified response to real pain stimuli (hyperalgesia).16
Recently, a
great deal of interest has been directed at the neuroendocrine system and the
abnormal status of such neurotransmitters/neurochemicals as
calcitonin-gene-related peptide, noradrenaline, endorphins, dopamine,
histamine, and GABA. Hormones of the hypothalamus, pituitary, and adrenal
glands are thought to be dysfunctional, too.17 Research by Leslie
Crofford, M.D., at the University of Michigan at Ann Arbor suggests that FM is
a "stress-associated syndrome" (since it often occurs following
physically or emotionally stressful events and is also exacerbated by them)
with disturbances in the major stress response systems, the
hypothalamic-pituitary-adrenal axis, the sympathetic nervous system, and very
likely, the autonomic nervous system.18 It also supports earlier ground-breaking
research conducted by Robert Bennett, M.D., at the Oregon Health Sciences
University, which found that the growth hormone axis is abnormal in individuals
with FM. Mexican researchers Carlos Abud-Mendoza et al., studied a subset of
fibromyalgia patients who didn't respond well to conventional therapy and found
they actually suffered from a form of subclinical hypothyroidism that was not
detected by routine lab tests. The hypothyroidism was believed to be rooted in
a central nervous system dysfunction.19
Fibromyalgia: A New Perspective
Not long
ago, medical researchers viewed fibromyalgia as a discrete medical entity.
Increasingly, however, FM is being seen as a condition which overlaps
significantly with certain other systemic illnesses and regional conditions
that affect particular body organs. One of the earliest proponents of this view
was University of Illinois researcher Muhammad Yunus, M.D., who developed the
concept of Central Sensitivity Syndromes (CSS). CSS is an umbrella term for a number of associated conditions
that share common clinical characteristics and a similar biophysiological
mechanism. Dr. Yunus includes nine conditions in addition to fibromyalgia:
chronic fatigue syndrome (CFS), irritable bowel syndrome (IBS), tension-type
headaches, migraine headaches, primary dysmenorrhea, periodic limb movement
disorder, restless legs syndrome (RLS), temporomandibular joint (TMJ) pain and
dysfunction syndrome, and myofascial pain syndrome (MPS).
According to
Dr. Yunus, members of the CSS family share certain common symptom
characteristics (i.e., pain, fatigue, poor sleep, hyperalgesia, absence of
structural tissue pathology, etc.); have common demographic features (i.e.,
female predominant); and exhibit neurohormonal dysfunctions which result in
central sensitivity which in turn causes "amplified, widespread, and
persistent pain." 20
With this
new perspective, the long list of symptoms/syndromes associated with
fibromyalgia can be seen in a special context rather than as one long, baffling
list of seemingly incongruent complaints. When FM and allied conditions are
viewed as part of a spectrum, new, coordinated, multi-disciplinary approaches
to research and treatment can be undertaken. Researchers and patients still
disagree on the extent to which systemic conditions like FM, chronic fatigue
syndrome, Gulf War syndrome, and multiple chemical sensitivity are similar, or
even identical, conditions. Interestingly, Dr. Robert Bennett also points out
that while FM patients are unlikely to develop another rheumatic or
neurological disease, it is not at all unusual for patients with well
established conditions like rheumatoid arthritis, Sjögren's Syndrome, or lupus
to develop FM.21 Other researchers have identified overlaps between
FM and conditions such as inflammatory bowel disease and Lyme disease. More
research will be necessary to unravel these puzzles.
Fibromyalgia and the NIH
In the United States, the principal federal government entity responsible for funding fibromyalgia research is the National Institutes of Health (NIH). Within the NIH, the institute most active in FM research is the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), though a number of other institutes and offices are increasingly taking an interest in various aspects of the condition and are earmarking research dollars for FM research.
While still
one of the smallest institutes in the NIH, NIAMS has devoted increased
attention to fibromyalgia research in recent years. Most notably, in July 1996
it sponsored a scientific workshop on the neuroscience and endocrinology of
fibromyalgia which brought together veteran fibromyalgia researchers as well as
leading experts in the basic sciences of chronic pain, neuroendocrinology,
circadian rhythms, and sleep disorders to help articulate research needs and
opportunities and identify gaps in current knowledge. During the latter part of
1999, the NIAMS, along with three other NIH Institutes,* awarded
$3.6 million in research grants for
fibromyalgia to 15 investigators as part of its March 1998 Request for
Applications (RFA), Basic and Clinical Research on Fibromyalgia. Of
particular interest to the Institute were studies on the pathogenesis and
clinical manifestations of FM.
Fibromyalgia Management
Because
there is currently no "magic pill" for fibromyalgia, treatment aims
at managing FM symptoms to the greatest extent possible. Just as individual
manifestations of fibromyalgia vary from patient to patient, so do successful
forms of treatment (e.g., what works for one patient may not work for another).
In addition, medical practitioners often have different preferences as to
treatment. Because successful FM treatment can involve a variety of medical
professionals, patients usually benefit from a coordinated, team approach to
disease management. The most common treatment strategies, used alone or in
combination, are the following:
Medication
Although a
number of medications are now available to treat fibromyalgia, two drugs,
amitriptyline (Elavil) and cyclobenzaprine (Flexeril) remain quite popular and
are helpful to many patients. Both have the advantage of having undergone
extensive clinical testing for effectiveness in the treatment of fibromyalgia.
Although prescribed for the treatment of depression in much higher dosages, the
tricyclic antidepressant amitriptyline is often useful in low doses to
fibromyalgia patients because it addresses the serotonin deficiency which often
accompanies FM and helps control pain and promote sleep. The medication
cyclobenzaprine is a muscle relaxant which has proved helpful in
A relatively
new group of medications which help to keep serotonin available in the system
longer after it is secreted in the brain are the Selective Serotonin Reuptake
Inhibitors (SSRI's). These medications tend to be reserved for FM patients who
are also suffering from depression. The SSRI's include: fluoxetine (Prozac),
sertraline (Zoloft), and paroxetine (Paxil), among others. Because side effects
may include nervousness or insomnia, SSRI's are often prescribed at low dosages
early in the day and are sometimes combined with a (sedating) tricyclic
antidepressant at night.
*The three other institutes included: The National Institute of Neurological Disorders and Stroke (NINDS), the National Institute of Dental and Craniofacial Research (NIDCR), and the Office of Research on Women’s Health (ORWH).
Non-steroidal
anti-inflammatory drugs (NSAIDs) are another class of medications which can be
somewhat helpful in taking the edge off of pain. NSAIDs include aspirin and
ibuprofen (among others), available in both prescription and non-prescription
form. Caution must be exercised when using these drugs over long periods of
time since they can cause gastrointestinal (GI) bleeding and ulcers.
A new type
of NSAID known as a COX-2 inhibitor has also appeared in the marketplace
recently. Currently available by prescription only, it is manufactured in two
forms under the brand names of Celebrex (Searle Pharmaceuticals) and Vioxx
(Merck). Unlike other NSAID's, these drugs carry a much lower risk of GI side
effects.
Also
effective in treating FM pain are analgesics like acetaminophen (Tylenol) or
stronger narcotic analgesics (i.e., codeine, methadone, morphine, etc.). The
latter tend to be prescribed much less frequently due to their side effects and
potentially addictive qualities and are often reserved for FM patients who are
experiencing painful flare-ups or who do not respond well to other pain
medications. A newer drug, tramadol (Ultram), has proven popular and effective
as a pain reliever for many patients in recent years. Individuals using Ultram
should be aware that this drug may sometimes cause allergic reactions in
persons sensitive to codeine medications. A small number of patients have also
reported having seizures after taking it.22
Benzodiazepines
like diazepam (Valium), alprazolam (Xanax), lorazepam (Ativan), and clonazepam
(Klonopin) are often used in conjunction with low levels of ibuprofen to treat
the anxiety as well as the muscle spasms that many FM patients experience.
Clonazepam is helpful in treating restless legs syndrome. These drugs act as
mild tranquilizers and have muscle relaxant properties. Like the narcotic analgesics,
benzodiazepines can cause physical dependency and must be administered with
care.
Although
regular sleep medications are not generally used on a long-term basis for FM
patients because they tend to impair the quality of deep sleep, the drug
zolpidem tartrate (Ambien) is sometimes prescribed for short intervals to
persons having severe sleep problems.
While the
aforementioned drugs remain the mainstay of general FM treatment, physicians
are utilizing several other drugs (many
of them new) for the treatment of particular symptoms and syndromes:
pramipexole for restless legs syndrome, alosetron (Lotronex) for irritable
bowel syndrome, gabapentin (Neurontin) for nerve pain, and tizandube
hydrochloride (Zanaflex) for muscle spasm.
Physical Rehabilitation
A wide
variety of hands-on "bodywork" therapies are available to individuals
with FM. Some can only be provided by trained physical rehabilitation
professionals familiar with fibromyalgia; others may be practiced at home,
under the guidance of a professional. The most widely used therapies are the
following:
Massage: Often combined with ultrasound and/or the
application of hot/cold packs, massage may be performed in a number of ways and
is useful in soothing and increasing blood circulation to tense, sore muscles.
It can also help remove built-up toxins like lactic acid and re-educate muscles
and joints which have become mechanically misaligned.
Myofascial
Release: A technique
developed by physical therapist John Barnes, myofascial release is a very
gentle form of bodywork designed to relieve restrictions and tightness in
connective tissue (fascia). When properly performed, it often decreases
connective tissue's pull on bones, allowing muscle fibers to relax and lengthen
and organs to expand.23
Trigger
Point Therapy: A technique
designed to break up the trigger points associated with myofascial syndrome,
sustained pressure is usually applied by a therapist. When trigger points
cannot be broken up by this method, patients may be sent to a physician for
trigger point injections.
Craniosacral
Therapy: Developed
by Dr. John Upledger, craniosacral therapy is "a gentle, non-invasive
method of evaluating and enhancing the function of the craniosacral system, the
environment in which the brain and spinal cord function...this manual therapy
encourages the body's natural healing mechanisms to improve the operation of
the central nervous system, dissipate the negative effects of stress, enhance
health, and strengthen resistance to disease". Patients can perform a form
of craniosacral therapy at home using a "stillpoint inducer", a
product which can be purchased commercially or fabricated by knotting two
tennis or racquet balls into a sock. The inducer is placed along the back of
the head at the line of the ear, for gradually increased lengths of time
(usually 2-20 minutes).24
Flexyx
Neurotherapy Systems (FNS): A
new FM treatment stemming from the research of Len Ochs, Ph.D.; Stuart
Donaldson, Ph.D.; and Mary Lee Esty, Ph.D.; Flexyx Neurotherapy uses
EEG-monitored, low frequency radio waves to treat FM patients who have suffered
a traumatic brain injury.25
Patients first have a brain mapping performed to identify areas of the
brain which have been injured and are functioning abnormally in terms of brain
wave activity. After a series of FNS treatments are administered by a specially
trained professional, followup physical rehabilitation work is done to restore
proper muscle balance, promote optimum posture, and address other neuromuscular
problems.
Chiropractic: As explained by chiropractor Eric
Terrell, D.C., "Chiropractic philosophy recognizes that the nervous system
via the brain, spinal cord, and nerves connects to every part of the body and
controls all bodily functions." Chiropractic care works to remove misalignments
in the vertebrae, "unchoke" nerves, and allow the body to heal
naturally.26
Osteopathy: A system of therapy founded by Andrew
Taylor Still, osteopathy proposes that the body is often able to effectively
cope with disease on its own as long as it is in a normal structural
relationship, has a favorable environment, and suffers no nutritional deficits.
Osteopathy uses generally accepted physical, medicinal, and surgical methods of
diagnosis and therapy (including the prescription of medications) while placing
chief emphasis on the musculoskeletal system. FM patients may receive
manipulation (bodywork) as part of a comprehensive treatment plan.
Stretching: Gentle stretching can be performed by
physical therapists and/or practiced by patients at home. Several videotapes
have been specially created for FM patients for this purpose. Stretching is
important because it helps to relieve muscle tension and spasm. In difficult to
treat areas, "spray and stretch" techniques can be used to apply a spray
coolant to sore muscles, deadening pain while the muscles are stretched.
Patients can also perform stretching exercises using a "Theraband", a
long elasticized strip which is manipulated in a number of ways, or an
oversized, inflatable "Swiss ball" over which they can extend
themselves in different ways to stretch and strengthen tight muscles.
Aerobic
Exercise: Low-impact
aerobic exercise is very important for fibromyalgia patients to prevent muscle
atrophy (wasting), to promote the circulation of blood containing oxygen and
other nutrients to muscles and connective tissue, and to build strength and
endurance. Examples of low-impact exercise include walking, warm water
walking/exercise, and the use of treadmills or cross-country ski machines. More
and more, gentle exercise programs designed specifically for fibromyalgia and
other chronic pain conditions are being offered through local health/recreation
centers, the Arthritis Foundation, and by videotape. A cardinal rule for
fibromyalgia patients is to start extremely slowly and conservatively and build
up exercise tolerance in increments. Most medical professionals also suggest
that patients find a form of exercise they like so that they will stick to it
on a regular basis. However, should a FM patient find that exercise repeatedly
causes high levels of pain, a consultation with a physical rehabilitation
therapist (i.e., physical therapist, chiropractor, etc.) may be indicated.
These professionals can help restore normal physiological relationships between
muscles and joints, thereby paving the way for successful exercise.
Complementary Therapies
A number of
other approaches have proven useful in the management of fibromyalgia:
Postural
Training: While the
various forms of bodywork described above can help patients reduce pain and
relax muscles, posture or movement training is often required to undo lifelong
bad habits which increase pain and to reeducate muscles/joints that have become
mechanically misaligned. Physical therapists can help with posture while professionals
trained in the "Alexander Technique" can provide movement training.
FM patients who have significant problems with foot pain resulting from poor
posture or body mechanics may also benefit from special shoe inserts
(orthotics) prescribed by a podiatrist.
Occupational
Therapy: When
job-related tasks contribute to pain (i.e., repetitive movements, uncomfortable
work stations, etc.), an occupational therapist can help by
suggesting/designing improvements. For example, for FM patients who work at a
computer, ergonomic keyboards, chairs, and other products may provide
significant relief.
Relaxation
Therapy: Not
surprisingly, the pain and related symptoms of fibromyalgia cause significant
stress to the body. Recent research suggests that, physiologically, FM patients
simply do not process stress well. Thus, effective stress management programs
are recommended. Among those used for fibromyalgia are: biofeedback, watsu,
meditation, breathing exercises, yoga, tai chi, progressive relaxation, guided
imagery, and autogenic training. Patients need to receive initial training for
many of these but can often continue practicing the concepts they have learned
on their own. Books, audiotapes, and classes are widely available to help.
Nutrition: Nutritional therapy for fibromyalgia can
be helpful in counteracting stress, ridding the body of toxins, and restoring
nutrients which have been malabsorbed or robbed from the body. Simple
approaches may include the use of vitamin/mineral supplements to combat stress,
replace deficiencies, and support the immune system. Nutritionists commonly
urge fibromyalgia patients to limit the amount of sugar, caffeine, and alcohol
they consume since these substances have been shown to irritate muscles and
stress the system. More sophisticated nutritional programs using diet, toxin
cleansing, and supplementation generally require a nutritionist familiar with
FM who tests patients to determine their particular nutritional needs. As with
other fibromyalgia treatments, a specifically designed nutritional plan that
works well for one patient may prove disastrous for another.27 Unfortunately, a number of unproven
"miracle" diets and supplements are advertised for FM and should be
investigated carefully by patients before use. When starting a new nutritional
program, it is important to inform your physician as some supplements and foods
cause serious, or even dangerous, side effects when mixed with certain
medications.
Acupuncture: While a number of alternative remedies
have been offered for FM management, very few have been rigorously studied in
clinical settings. Acupuncture, a treatment which involves the insertion of
small needles at specific anatomical points identified as conducive to energy,
has received more scrutiny than most. In November 1997, the National Institutes
of Health convened a Consensus Panel
on Acupuncture which issued a statement indicating that (1) pain from musculoskeletal conditions and
(2) nausea were the entities most successfully treated by acupuncture.28
In February 1998, the NIH Office of Alternative Medicine, along with NIAMS and
several other institutes/offices, announced the "Acupuncture Clinical
Trial Pilot Grants" designed to increase the quality of clinical research
evaluating the efficacy of acupuncture for the treatment or prevention of
fibromyalgia and several other diseases/conditions.
Cognitive/Behavioral
Therapy: As trite as
it may sound, attitude is often one of the strongest predictors of how well a
patient is able to manage FM. Research has shown that patients who are not
actively engaged in taking charge of their illness simply aren't as likely to
get better. Those who unknowingly adopt maladaptive illness behaviors (i.e.,
hopelessness, victim mentality) are less likely to aggressively seek help through
exercise, physical therapy, or medications. Getting better with FM can be very
tough, but patients should not give up. Constructive help is available. If
negative thinking is a problem, cognitive/behavioral therapy (via classes,
audiotapes, and or individual counseling) can be a beneficial resource.
Common
Sense: Individuals with FM can make a meaningful
contribution to their own treatment by learning how their bodies respond to
fibromyalgia. For example, do certain activities (especially those involving
repeated or prolonged muscle use) tend to exacerbate FM? If so, how can they be modified or replaced
and thus better tolerated? Do certain types/levels of activity cause delayed
pain reactions a day or two later? Also crucial is learning to pace yourself,
take frequent breaks, and/or say "No" to requests that simply cannot
be accommodated on a particularly bad day. If certain commitments cannot be
avoided, try to get extra rest before and after to aid in recovery. While these
ideas sound simple in theory, they are often difficult to implement.
Self
Tolerance: It is all
too easy for individuals with FM to be excessively hard on themselves. After
realizing that they are unable to accomplish all they once did, they can become
overly critical or disparaging of themselves in their "self-talk".
Guilt may also become a problem as they must depend on friends and family to a
greater extent for help with daily activities while "letting them
down" by saying "no" to social outings when symptoms are severe.
If surrounded by people who don't "believe in" fibromyalgia, patients
may wonder if their FM really IS just a figment of their imagination or is
somehow "their fault". And, if a helpful treatment regimen is not
discovered right away, they may feel discouraged or worry that others think
they just aren't trying hard enough to feel better.
Newly
diagnosed patients need to know that it is not their fault that they have
fibromyalgia. FM is a legitimate, medically recognized condition which is being
actively researched every day. Public awareness of FM is rapidly increasing,
too. It takes enormous energy as well
as courage to adjust to FM and find treatments that work well without wasting
precious energy on guilt, self- deprecation, and doubt.
Rheumatologist
and FM specialist Russell Rothenberg, M.D., has words of hope to share. Just
because someone starts out with severe symptoms doesn't mean that (s)he cannot
find worthwhile improvement with a skillfully devised and comprehensive
treatment program. "Patients need to know that medication, judicious rest,
exercise, physical therapy, and good diets can do more than just control the
symptoms of fibromyalgia; they can control the disease process as well. There
is no cure for FM, but people do get better! Hopefully, as better medications
that are more specific for fibromyalgia are developed, and people are diagnosed
earlier in their illness, more individuals with fibromyalgia will go into
remission, or at least partial remission, and feel better."29
References
1.
Muhammad Yunus, M.D., "What's New in Fibromyalgia Syndrome? A
Review of Abstracts Presented in the 1996 American College of Rheumatology
Annual Scientific Meeting: Part 1", The Fibromyalgia Times, Vol. 1,
No. 4, Winter 1997, p.4.
2.
Daniel Clauw, M.D., "Update on the Physiology and Management
of Fibromyalgia Syndrome," seminar presentation hosted by the National Fibromyalgia Partnership (formerly the Fibromyalgia
Association of Greater Washington, Inc.) on 11/10/97, Bethesda, MD.
3.
See "Thoracic Pain and Dysfunction," Fibromyalgia
Frontiers, Vol. 5, # 2, Spring 1997.
4.
Clauw, ibid.
5.
Bou-Holaigah, M.D., et al., "Provocation of Hypotension and
Pain During Upright Tilt Table Testing in Adults with Fibromyalgia,"
Clinical and Experimental Rheumatology, Vol. 15, 1997, pp.239-246.
6.
Muhammad Yunus, M.D., "Fibromyalgia and Other Overlapping
Syndromes: The Concept of Dysregulation Spectrum Syndrome," seminar
presentation hosted by the National Fibromyalgia
Partnership (formerly the Fibromyalgia Association of Greater Washington, Inc.) on
11/10/97, Bethesda, MD.
7.
Daniel Clauw, M.D., "New Insights into Fibromyalgia," Fibromyalgia
Frontiers, Vol. 2, # 4, Fall 1994.
8.
Frederick Wolfe, M.D., et al., "The American College of
Rheumatology 1990 Criteria for the Classification of Fibromyalgia: Report of a
Multicenter Criteria Committee," Arthritis & Rheumatism, Vol.
33, No. 2, February 1990, pp. 160-172.
9.
Clauw, ibid.
10.
G. Granges and G. Littlejohn, "Pressure Pain Threshold in
Pain-Free Subjects, in Patients with Chronic Regional Pain Syndromes, and in
Patients with Fibromyalgia," Arthritis & Rheumatism, May 1993,
Vol. 36, #65, pp. 642-6.
11.
D. Buskila, M.D., et al., "Increased Rates of Fibromyalgia
Following Cervical Spine Injury: A Controlled Study of 161 Cases of Traumatic
Injury," Arthritis & Rheumatism, Vol. 40, No. 3, March 1997,
pp. 446-52.
12.
Stuart Donaldson, Ph.D., et al., “Fibromyalgia: A Retrospective
Study of 252 Consecutive Referrals,” Canadian Journal of Clinical Medicine,
Vol. 5, # 6, June 1998.
13.
For example, in 1999, NIAMS/NIH awarded a grant to Case Western
Reserve University (Cleveland, OH) researcher Jane Olsen, M.D., for her project
entitled, "Mapping Genes for Fibromyalgia Syndrome." In addition,
researchers Muhammad Yunus, M.D., and Debra Buchwald, M.D., have also been very
active in the study of genetics and FM.
14.
See "Study of Mycoplasma in Gulf War Vets May Provide Clues
for FMS/ CFS." Fibromyalgia Frontiers, Vol. 7, #3, July/August
1999, pp. 1-11.
15.
I. Jon Russell, M.D., Ph.D., et al., "Elevated Cerebrospinal
Fluid Levels of Substance P in Patients with the Fibromyalgia Syndrome," Arthritis
& Rheumatism, Vol. 37, No. 11, November 1994, pp.1593-1601. See also
"Cerebrospinal Fluid (CSF) Substance P (SP) in Fibromyalgia (FM): Changes
in CSP SP Over Time, Parallel Changes in Clinical Activity," Arthritis
& Rheumatism, Abstract Supplement, Vol. 41, #9, September 1998.
16.
J. Fransen, R.N., and I.Jon Russell, M.D., Ph.D., The
Fibromyalgia Help Book: Practical Guide to Living Better with Fibromyalgia,
St. Paul, MN: Smith House Press, 1996, pp. 25-26.
17.
Muhammad Yunus, M.D., "Dysfunctional Spectrum Syndrome: A
Unified Concept for Many Common Maladies," Fibromyalgia Frontiers,
Vol. 4, No. 4, Fall 1996, p. 3.
18.
Leslie J. Crofford, M.D., et al, "Neurohormonal Perturbations
in Fibromyalgia," Baillieres Clin Rheumatology, Vol. 10, No. 2, May
1996, pp. 365-78. See also, Leslie J.
Crofford, M.D., "The Hypothalamic-Pituitary-Adrenal Stress Axis in the
Fibromyalgia Syndrome," Journal of Musculoskeletal Pain, The
Haworth Press, Vol. 4, No. 1/2, 1996.
19.
Carlos Abud-Mendoza et al., " Hypothalamus-Hypophysis-Thyroid
Axis Dysfunction in Patients with Refractory Fibromyalgia," Arthritis
& Rheumatism, Abstract Supplement, Vol. 40, #9, September 1997.
20.
Muhammad Yunus, M.D., "Central Sensitivity Syndromes: A
Unified Concept for Fibromyalgia and Other Similar Maladies," JIRA,
Vol. 8, # 1, March 2000. See also Muhammad Yunus, “Fibromyalgia and Other
Overlapping Syndromes: The Concept of Dysregulation Spectrum Syndrome,” seminar
hosted by the National Fibromyalgia Partnership (formerly
the Fibromyalgia Association of Greater Washington, Inc.) on
11/10/97, Bethesda, MD., and Muhammad Yunus, “Dysfunction Spectrum Syndrome: A
Unified Concept for Many Common Maladies,” Fibromyalgia Frontiers, Vol.
4, No. 4, Fall 1996.
21.
Robert Bennett, M.D., "An Overview of Fibromyalgia for Newly
Diagnosed Patients," Website of the Oregon Fibromyalgia Foundation,
www.myalgia.com..
22.
Ortho-McNeil Pharmaceutical, Letter to Health Care Professionals,
3/20/96.
23.
Hanna Meyer, L.M.T., C.N.M.T., Presentation hosted by the National Fibromyalgia Partnership (formerly the Fibromyalgia
Association of Greater Washington, Inc.) on 3/7/98.
24.
Sue Muris, PT, "Exploring Body Work for FM Self-Care," Fibromyalgia
Frontiers, Vol. 4, No. 3, Summer 1996, p.4.
25.
See "EEG-Driven Stimulation: Hitting the 'Reset Button' in
Fibromyalgia Patients," Fibromyalgia Frontiers, Vol. 6, #4,
July/August 1998, and "CNS Myalgia: A New Paradigm for Fibromyalgia,"
Fibromyalgia Frontiers, Vol. 7, #3, September/October 1999.
26.
Eric D. Terrell, D.C., "Chiropractic & Chronic
Pain", Fibromyalgia Frontiers, Vol. 5, No. 4, Fall 1997.
27.
"Panel on Nutrition," a speaker presentation hosted by the National Fibromyalgia Partnership (formerly the Fibromyalgia
Association of Greater Washington, Inc.) on 6/4/97 featuring Virginia Inglese,
M.A., R.D., CEDS; Sam Makoul, BCCN; Marti Pattishall, and Victoria Wood,
M.P.H., R.D.
28.
Complementary and Alternative Medicine at
the NIH,, Vol. 5, No. 1, January 1998.
29.
Russell Rothenberg, M.D., "To The Newly Diagnosed
Patient," Fibromyalgia Frontiers, Vol. 3, No. 1, Winter 1995, p. 7.
The FM Monograph is available in booklet form from the
National
Fibromyalgia Partnership. To order, visit our online store or
write
for a catalog: NFP, Inc., 140 Zinn Way, Linden, VA 22642.