FMS MONOGRAPH
An Overview of the Fundamental Features of Fibromyalgia Syndrome
© Copyright 1999, National Fibromyalgia Partnership, Inc. (formerly, Fibromyalgia Association of Greater Washington, Inc). This document may be duplicated in its entirety by patients, medical/legal professionals, and non-profit organizations for educational purposes. The reprinting or for-profit sale of this monograph in ANY medium is strictly prohibited.
CONTENTS
1. What Is Fibromyalgia Syndrome?
2. Symptoms/Syndromes Associated With FMS
3. Official Diagnostic Criteria
4. Limitations of the ACR Diagnostic Criteria
5. What Causes Fibromyalgia?
6. Fibromyalgia: A New Perspective
7. Fibromyalgia & the National Institutes of Health
8. Fibromyalgia Management
9. References
10. For More Information On FMS-Related Disorders
1. WHAT IS FIBROMYALGIA SYNDROME?
Fibromyalgia syndrome (also called "FMS" or "FM") 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, fibromyalgia does not cause pain or swelling in the joints themselves; rather, it produces pain in the soft tissues located around joints, skin, and organs throughout the body. Because fibromyalgia produces few symptoms that are outwardly noticeable, it has been nicknamed "the invisible disability" or the "irritable everything" syndrome.
The pain of fibromyalgia usually consists of diffuse aching or burning described as "head-to-toe", and it is often accompanied by muscle spasm. Its severity varies from day to day and can change location, becoming more severe in parts of the body that are used the most (i.e., the neck, shoulders, and feet). In some people, the pain can be intense enough to interfere greatly with work and ordinary, daily tasks, while in others it causes only mild discomfort. Likewise, the fatigue of fibromyalgia also varies from person to person ranging from a mild, tired feeling to the exhaustion of a flu-like illness. The good news is that FMS is neither crippling nor fatal.
Although the exact prevalence of FMS in the general population is difficult to ascertain, up to 10 million Americans have been estimated to have fibromyalgia syndrome,1 and the condition exists around the world. While most prevalent in adult women, fibromyalgia also occurs in children, the elderly, and men.
2. SYMPTOMS/SYNDROMES ASSOCIATED WITH FMS
In addition to pain and fatigue, a number of allied symptoms/syndromes are currently associated with FMS. Patients typically experience one or more of the following:
Stiffness: Body stiffness may be particularly apparent upon awakening and after prolonged periods of sitting or standing in one position or coincide with changes in temperature or relative humidity.
Increased Headaches Or Facial Pain: Fibromyalgia patients may experience frequent migraine, tension, or vascular headaches. Pain may also consist of referred pain to the temporal area (temples) or behind the eyes. Approximately one-third of patients with fibromyalgia are thought to have pain and dysfunction of the temporomandibular joint, or TMJ, (located where the jaw meets the ear) which produces not only headaches but also jaw and facial pain.
Sleep Disturbances: Despite sufficient amounts of sleep, FMS patients may awaken feeling unrefreshed, as if they have barely slept. Alternatively, they may have trouble falling asleep or staying asleep. Some also suffer from the condition, sleep apnea. The reasons for the non-restorative sleep and other sleep difficulties of fibromyalgia are unknown. However, early FMS research in sleep labs documented disruptions in the deep (delta) sleep of some fibromyalgia patients.
Gastrointestinal Complaints: Digestive disturbances, abdominal pain, and bloating are quite common in FMS as are constipation and/or diarrhea (also known as "irritable bowel syndrome" or IBS). In addition, patients may have difficulty swallowing food which research suggests is a result of objective abnormalities in smooth muscle functioning in the esophagus.2
Genito-Urinary Problems: FMS patients may experience increased frequency of urination or increased urgency to urinate, typically in the absence of a bladder infection. Some may develop a more chronic, painful inflammatory condition of the bladder wall known as "interstitial cystitis" (IC). Women with FMS may have more painful menstrual periods or experience worsening of their FMS 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 FMS. Also known as "paresthesia", the sensation can be described as prickling or burning.
Temperature Sensitivity: Persons with fibromyalgia tend to be highly sensitive to ambient temperature. Some often feel abnormally cold (compared to others around them) while others feel abnormally warm. An unusual sensitivity to cold in the hands and/or feet, accompanied by color changes in the skin, sometimes occurs in persons with fibromyalgia. This condition is known as "Raynaud’s Phenomenon".
Skin Complaints: Nagging symptoms, such as itchy, dry, or blotchy skin, may accompany FMS. Dryness of the eyes and mouth is also not uncommon. Additionally, fibromyalgia patients may experience a sensation of swelling, particularly in extremities, like fingers. A common complaint is that a ring no longer fits on a finger. Such swelling, however, is not equivalent to the joint inflammation of arthritis; rather, it is a localized anomaly of FMS whose cause is currently unknown.
Chest Symptoms: Individuals with fibromyalgia who engage in activities involving continuous, forward body posture (i.e., typing, sitting at a desk, etc.) often have special problems with chest and upper body pain known as "thoracic pain and dysfunction".3 Often accompanying the pain is shallow breathing and postural problems. Patients may also develop a condition called "costochondralgia" which involves muscle pain where the ribs meet the chest bone. Such conditions may mimic heart disease and are therefore sometimes misdiagnosed. (Note: Anyone experiencing chest pain should always consult a physician immediately. Remember that persons with fibromyalgia can have other health problems!) Persons with fibromyalgia 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 in FMS patients unless another cardiac condition is also present.
Dysequilibrium: FMS patients may be troubled by light-headedness and/or balance problems which manifest themselves in a number of ways. Since fibromyalgia is thought to affect the skeletal tracking muscles of the eyes, nausea or "visual confusion" 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 Weak muscles and/or trigger points in the neck or TMJ problems in the jaw may also cause dizziness or dysequilibrium. Researchers at Johns Hopkins Medical Center have also shown that some FMS 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
Cognitive Disorders: Persons with FMS report a number of cognitive symptoms which tend to vary from day to day. These include difficulty concentrating, "spaciness," short-term memory lapses, and being overwhelmed easily. Many fibromyalgia patients refer to such symptoms as "fibro-fog".
Leg Sensations: Some FMS patients may develop a neurologic disorder known as "restless legs syndrome" (RLS) which involves an irresistible urge to move the legs particularly when at rest or when lying down. One recent study reported that 31% of the fibromyalgia patients studied had RLS.6 The syndrome may also involve periodic limb movements during sleep (PLMS) which can be very disruptive to both the patient and to his/her sleeping partner.
Environmental Sensitivity: Hypersensitivity to light, noise, odors, and weather patterns is common and is usually explained as being a result of the hypervigilance seen in the nervous systems of patients with FMS. Neurogenic inflammation, a discrete, localized inflammatory response which does not activate the immune response or show up in tests, seems to play a part in the itching and rashes seen in FMS.7 Allergic-like reactions to a variety of substances (i.e., medications, chemicals, food additives, pollutants, etc.) are common, and patients may also experience a form of non-allergic rhinitis consisting of nasal congestion/discharge and sinus pain, but in the absence of the immunologic reactions which the body experiences in allergic conditions. Daniel Clauw, M.D., and James Baraniuk, M.D., of Georgetown University Medical Center are in the process of studying nasal and airway symptoms, as well as pain and fatigue, in patients with fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, migraine headaches, and interstitial cystitis.
Depression And Anxiety: Although FMS 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. However, where depression or anxiety exist concomitant to fibromyalgia, their treatment is important as both can exacerbate FMS and interfere with successful symptom management.
3. OFFICIAL DIAGNOSTIC CRITERIA
Fibromyalgia syndrome has had a long, if rather obscure, history as an illness. Masquerading behind numerous medical aliases, FMS has existed throughout history and throughout the world. It was only in 1990, however, that official diagnostic criteria for FMS were established by the American College of Rheumatology (ACR).8 They include the following:
Bilateral FMS Tender Points
As Defined by the ACR
Occiput:
at the sub-occipital muscle insertions.Note: Graphic Courtesy of Daniel Clauw, M.D.
(1) History of Widespread Pain: Chronic, widespread, musculoskeletal pain for longer than three months in all four quadrants of the body. ("Widespread pain" means 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 considered as having 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.
As the ACR criteria suggest, a fibromyalgia diagnosis requires the "hands-on" evaluation of a patient by a medical professional skilled in fibromyalgia diagnosis. Since patients are not always 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 by a physician are also crucial for a correct diagnosis. Since the symptoms of fibromyalgia mimic several other diseases (for example, systemic lupus, polymyalgia rheumatica, myositis/polymyositis, the nerve damage of diabetes, thyroid disease, rheumatoid arthritis, multiple sclerosis, and others), it is necessary to rule out those conditions before a FMS diagnosis is made. While a FMS diagnosis does not preclude the co-existence of another condition, one needs to be sure that no other condition is mistaken for fibromyalgia syndrome so that proper treatment can be initiated.
4. 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 syndrome. For the first time, researchers around the world could identify FMS patients using standardized measures. Patients who had fallen through the cracks of medical science could finally be diagnosed. The criteria were not without their drawbacks, however.10
First, the tender point paradigm suggested that fibromyalgia patients only experience pain in anatomically specific sites in the body. However, new studies (such as those reported by Granges and Littlejohn in 1993) began suggesting that individuals with FMS are sensitive to painful stimuli throughout the body, not merely at the ACR-identified locations. Today, widespread body pain is commonly associated with fibromyalgia.
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.
Also problematic were the tender point exams conducted by medical professionals. When performed incorrectly (at the wrong anatomical point or with the incorrect amount of digital palpation), they yielded erroneous results. In addition, tender points were sometimes confused with trigger points (painful areas located within tight bands of muscle which radiate pain or numbness or tingling into the body).
The search continues for a foolproof laboratory marker for fibromyalgia syndrome. Exciting new research by Canadian researcher Stuart Donaldson, Ph.D., has suggested that there may be a signature spike in the EEG's (brain scans) of fibromyalgia patients which may provide just such a marker.11 As the work of Dr. Donaldson and other fibromyalgia researchers continues, the ACR criteria, in conjunction with differential diagnosis, are still the most widely used diagnostic tool for FMS.
5. WHAT CAUSES FIBROMYALGIA?
Although the cause of fibromyalgia syndrome is not currently known, research has already uncovered significant information. For example, fibromyalgia syndrome often develops after a physical trauma (i.e., an accident, injury, or severe illness) that appears to act as a trigger in predisposed individuals. Such a trauma may affect the central nervous system which in turn produces the condition that we know as fibromyalgia. During 1997, a team of investigators lead by Israeli researcher Dan Buskila, M.D., reported a study of the relationship between cervical spine injuries and the onset of fibromyalgia which found that FMS was 13 times more likely to occur following a neck injury than an injury to the lower extremities.12 Early studies by Dr. Donaldson's research team in Calgary, Canada, suggest that in fibromyalgia patients the most powerful electrical activity in the brain is inappropriately in the slowest brain waves (i.e., EEG slowing). Therefore, there is reason to believe that significant physiological changes may occur in the body following a severe trauma, particularly when the neck or upper body is involved.13
Not all cases of FMS can be considered post-traumatic fibromyalgia, however, since many times no apparent "trigger" can be identified. Because of this, researchers continue to explore a number of avenues which might explain the etiology of fibromyalgia. For example, studies already suggest that there is a strong familial pattern in the occurrence of FMS, with fibromyalgia often seeming to follow the female side of the family. Thus, genetic research is of great interest to many researchers.14 In addition, new research supervised by neurosurgeon Michael Rosner, M.D., of the University of Alabama, is examining the extent to which FMS patients suffer from spinal cord compression, a condition which may be responsible for some of the symptoms experienced by FMS patients and which can be corrected by surgery. Still other investigators believe that fibromyalgia is caused by an infectious agent, such as a virus, but no such agent has yet been identified.
Early research into the cause of fibromyalgia syndrome studied possible defects or dysfunction in the muscles of fibromyalgia patients. However, hypotheses in this area have been largely disproved as evidence continues to mount that FMS is caused by a central mechanism in the brain (i.e., the central nervous system) and not by malfunctions in muscles in peripheral areas of the body. A research team led by Laurence Bradley, Ph.D., at the University of Alabama at Birmingham has used SPECT scans to demonstrate the apparent low levels of regional cerebral blood flow in the brain structures of fibromyalgia patients which help regulate the transmission of brain signals within the central nervous system.15 In addition, investigators such as I. Jon Russell, M.D., Ph.D., of the University of Texas Health Science Center in San Antonio, continue to study the brain neurotransmitter Substance P (the agent which signals the brain to register pain) which exists in increased amounts in fibromyalgia patients—in fact, three times more than in normal controls.16
Also of continued interest is why the neurotransmitter serotonin (which modifies the intensity of pain signals entering the brain) appears to be deficient in patients with fibromyalgia. In fact, many of the medications currently used to treat fibromyalgia work to counteract this deficit. While it is becoming increasingly clear that there is a breakdown in the pain perception system in fibromyalgia patients, it is not yet known if the problem is related to allodynia (an increase in pain perception which occurs even though the stimuli sent from the various parts of the body are basically normal) or hyperalgesia (a "hyper" response to real pain stimuli).17
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.18 Research by Leslie Crofford, M.D., at the University of Michigan at Ann Arbor suggests that FMS 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. 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 FMS.19 Mexican researchers Carlos Abud-Mendoza et al studied a subset of FMS 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.20
6. FIBROMYALGIA: A NEW PERSPECTIVE
Not long ago, medical researchers viewed fibromyalgia syndrome as a discrete medical entity. Increasingly, however, FMS is being seen as a condition which overlaps significantly with certain other systemic illnesses along with a number of regional conditions that affect particular body organs. One of the earliest proponents of this point of view was University of Illinois researcher Muhammad Yunus, M.D., who developed the concept of Dysregulation Spectrum Syndrome (DSS).21 DSS 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 besides FMS in his DSS family: chronic fatigue syndrome (CFS), irritable bowel syndrome, tension headaches, migraine headaches, primary dysmenorrhea, periodic limb movement disorder, restless legs syndrome, temporomandibular pain syndrome, and myofascial pain syndrome. He predicts that future research will add new members.
According to Dr. Yunus, members of the DSS family share the following characteristics: (1) they cluster in the same patient groups; (2) they share common symptom characteristics (pain, fatigue, poor sleep, female predominant, etc.); (3) they involve an increased sensitivity to pain in the body; (4) they exhibit no pathology in the classical medical sense (i.e., inflammation, degeneration of tissue); (5) they have the same prevalence of psychological complaints (i.e., anxiety, depression, and stress) as other chronic conditions; (6) they are likely to share a common genetic factor; (7) they can all be explained based on a common neuroendocrine dysfunction in the brain and spinal cord (i.e., especially levels of neurotransmitters and neurochemicals as well as the dysfunction of hormones from various endocrine glands); and (8) patients with medical illnesses in the DSS family will benefit most from centrally acting treatments.
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 FMS and allied conditions are viewed as part of a spectrum, new, coordinated, multi-disciplinary approaches to research and treatment can be undertaken.
There is still much disagreement among researchers and patients alike regarding the extent to which systemic conditions like fibromyalgia syndrome, chronic fatigue syndrome, Gulf War syndrome, and multiple chemical sensitivity are similar, or even identical, conditions. More research will be necessary to determine just how much overlap is actually occurring. Certainly, the identification of laboratory markers and more detailed syndrome "profiles" will help unravel this puzzle. Meanwhile, the overall concept of overlap encourages significant changes in the thinking which has revolved around FMS.
7. FIBROMYALGIA & THE NATIONAL INSTITUTES OF HEALTH
In the United States, the principal federal government entity responsible for funding fibromyalgia research, both intramural and extramural, is the National Institutes of Health (NIH). Within the NIH, the institute most active in FMS 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 FMS research, often in conjunction with NIAMS. In addition to clinical research, NIAMS places a great deal of emphasis on basic research in such areas as pain, sleep, and the neuroendocrine system in the hope that they will provide valuable clues to the etiology of fibromyalgia and other diseases in its research portfolio. Also stressed is behavioral and social sciences research which is important in understanding illness coping behaviors and helping to find ways to manage the more clinically complex symptoms of many medical conditions.
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. In early 1998, NIAMS joined forces with five other institutes/offices of the NIH to offer funding for investigator-initiated research projects and exploratory/developmental projects for "tightly focused innovative research studies relating to all aspects of [the] pathogenesis and clinical manifestations of fibromyalgia syndrome and to relationships between FMS and temporomandibular disorders".22 The estimated total funds to be made available during the first year of support for this request for applications (RFA) are $3.6 million.
8. FIBROMYALGIA MANAGEMENT
Because there is currently no "magic pill" for fibromyalgia, treatment aims at managing FMS 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. Among the most commonly used treatment strategies, used alone or in combination, are the following:
Medication: Although a number of medications are now available to treat fibromyalgia syndrome, two drugs, amitriptyline (Elavil) and cyclobenzaprine (Flexeril) remain the most popular and are helpful to many patients. Both have the advantage of having undergone extensive clinical testing for effectiveness in the treatment of fibromyalgia syndrome. The tricyclic agent amitriptyline works on the serotonin deficiency present in FMS patients and has the added benefit of helping to promote sleep and control pain. Although also commonly prescribed in higher doses for depression, amitriptyline is most useful to fibromyalgia patients at lower dosages. The medication cyclobenzaprine is a muscle relaxant which has proved helpful in the treatment of FMS muscle pain and spasm. For those patients who do not tolerate these drugs well, many other similar-acting medications are available.
A relatively new group of medications (used largely to treat clinical depression which sometimes occurs with FMS) are the Selective Serotonin Reuptake Inhibitors (SSRI’s). These include: fluoxetine (Prozac), sertraline (Zoloft), and paroxetine (Paxil), among others. Because their side effects may include nervousness or insomnia, they are often prescribed along with sedating medications.
Non-steroidal, anti-inflammatory drugs (or NSAIDS, for short) are another class of medications which can be helpful in taking the edge off of fibromyalgia pain. NSAIDS include aspirin, ibuprofen (Motrin), and naproxen sodium (Aleve), 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 bleeding, gastrointestinal ulcers. Fibromyalgia patients can take heart, however, because an innovative new form of NSAID known as a COX-2 inhibitor has recently appeared in the marketplace, at least in prescription form. The drug carries the brand names of Celebrex (Searle Pharmaceuticals) and Vioxx (Merck). Unlike its predecessors, this NSAID blocks only one of the two cyclooxygenase (COX) enzymes which control the production of prostaglandins--the "bad" one (COX-2) produced in the event of trauma which generates high levels of the prostaglandins that cause inflammation and pain. Furthermore, this COX-2 inhibitor works without causing any known side effects! The "good" enzyme, COX-1, which keeps the stomach, platelets, kidneys, and other tissues in good shape (and when blocked causes the potentially dangerous side effects associated with traditional NSAIDS) is unaffected by the drug.23
Another group of medications, analgesics like acetaminophen (Tylenol) or stronger narcotic analgesics containing codeine, can also be effective in treating chronic pain. However, the latter are prescribed less frequently due to their potentially addictive qualities and are often reserved for FMS 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.24
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 FMS patients experience. Clonazepam, in particular, is often very 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 FMS patients because of their habit-forming properties, the drug zolpidem tartrate (Ambien) is sometimes prescribed for short intervals to persons having severe sleep problems and is thought to be less habit-forming.
Other classes of prescription medications may be administered as treatment for other symptoms or conditions associated with fibromyalgia (irritable bowel syndrome, for example). However, the aforementioned drugs remain the mainstay of general fibromyalgia treatment.
Physical Rehabilitation: A wide variety of hands-on "bodywork" therapies are available to individuals with FMS. Some can only be provided by trained physical rehabilitation professionals familiar with fibromyalgia syndrome; others may be practiced at home, particularly under the supervision of a professional. Among 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.25
Trigger Point Therapy: A technique designed to break up trigger points (hyperactive spots in the muscles where the nervous system is overly active). Sustained pressure is usually applied by the therapist. When trigger points can not be broken up via this therapy, 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 one type of craniosacral therapy at home using a "stillpoint inducer", a product which can be purchased commercially or fabricated by tightly stuffing two tennis or racquet balls into a sock. The inducer is placed on the back of the head at the line of the ear, and the patient rests on it for five to 20 minutes.26
Flexyx Neurotherapy: A brand new FMS treatment stemming from the research of Dr. Stuart Donaldson, Flexyx Neurotherapy essentially "resets" the brains of FMS patients who show signs of "EEG Slowing" (see Section 5 of this document) using a non-light emitting diode which is transmitted to the brain, drawing power from the slowest brain waves up to the fastest waves. Once the brain enters a flexible new state, effective neuromuscular re-education, including trigger point therapy, myofascial release, and micro exercises can be instituted.27
Chiropractic: "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.28
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 while placing chief emphasis on the musculoskeletal system. FMS patients may receive manipulation (bodywork) as part of a comprehensive treatment plan.
Stretching: Gentle stretching can be performed by physical therapists or practiced by patients at home. Several videotapes have been specially designed for fibromyalgia 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. The coolant is available by prescription and may be applied at home by patients (and/or their family members) who have been trained in its use. 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 chest and abdominal 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 very 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, if a FMS patient finds 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 syndrome:
Postural Training: While the various forms of bodywork described previously can help patients reduce pain and relax muscles, posture or movement training is often required to undo lifelong bad habits which can increase pain and to re-educate muscles/joints that have become mechanically misaligned. Physical therapists can help with posture while professionals trained in the "Alexander Technique" can provide movement training. Fibromyalgia 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. Increasingly, literature is also available on this subject. For example, for fibromyalgia 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. Ironically, new research suggests that physiologically FMS patients simply do not manage stress well. Thus, effective stress management programs are important. Among those used for fibromyalgia are: biofeedback, watsu, meditation, breathing exercises, progressive relaxation, guided imagery, and autogenic training. Patients need to receive initial training in biofeedback and watsu but can then often continue practicing the concepts they have learned on their own. Books, audiotapes, and classes which teach meditation, breathing exercises, and relaxation techniques are usually readily available.
Nutrition: Nutritional therapy for fibromyalgia can be helpful in counteracting stress, ridding the body of toxins, and restoring nutrients which have been malabsorbed by or robbed from the body. Simple approaches may include the use of anti-oxidant vitamin supplements (containing vitamins, A, C, and E) to combat stress and support the immune system. Some patients also benefit from taking magnesium supplements which help the muscles. Nutritionists commonly urge fibromyalgia patients to limit the amount of sugar, caffeine, and alcohol they consume since these substances irritate muscles and stress the system. More sophisticated nutritional programs using diet, toxin cleansing, and supplementation are, of course, possible, but they usually require a nutritionist familiar with FMS who first runs tests to determine the particular nutritional needs of a patient. As with other fibromyalgia treatments, a specifically designed nutritional plan that works well for one patient may prove disastrous for another.29
Acupuncture: While a number of alternative remedies have been offered for FMS management, very few have been rigorously studied in clinical settings. Acupuncture, a treatment which involves the insertion of very small needles at specific anatomical points identified as conducive to energy, has received more scrutiny. 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 treatable with acupuncture.30 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 will be able to manage fibromyalgia. 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. Those who need help in combating negative thinking can find help via classes and/or audiotapes on cognitive/behavioral therapy or via counseling.
Common Sense: Individuals with fibromyalgia can make a meaningful contribution to their own treatment by learning as much as they can about how their bodies respond to fibromyalgia. For example, do certain activities (especially those involving repeated or prolonged muscle use) tend to exacerbate fibromyalgia? How can such activities be modified or replaced and thus be better tolerated? Do certain types/levels of activity cause delayed pain reactions a day or two later? Also crucial is learning to pace oneself, take frequent breaks, and/or say "No" to requests that simply cannot be accommodated on a particularly bad fibromyalgia day. If certain commitments cannot be avoided, is it possible to get extra rest before and after to aid in recovery? While these ideas sound simple in theory, they are often difficult to implement.
Because successful FMS treatment can involve a variety of medical professionals, patients usually benefit from a coordinated, team approach to disease management. Ideally, all medical practitioners treating a given patient work with the patient toward a positive outcome. Just because someone starts out with severe fibromyalgia symptoms doesn’t mean that (s)he cannot find worthwhile improvement with a skillfully devised and comprehensive treatment program. According to rheumatologist and fibromyalgia specialist Russell Rothenberg, M.D., "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 fibromyalgia, 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."31
9. 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 Fibromyalgia Association of Greater Washington, Inc. (FMAGW), on 11/10/97, Bethesda, MD.
3. "Thoracic Pain and Dysfunction," Fibromyalgia Frontiers, Vol. 5, # 2, Spring 1997.
4. Clauw, ibid.
5. I. 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 FMAGW. 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. Ibid.
10. Clauw, ibid.
11. Donaldson et al, "Fibromyalgia: A Retrospective Study of 252 Consecutive Referrals," Canadian Journal of Clinical Medicine, Volume 5, Number 6, June 1998, pp. 116-127.
12. 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.
13. Donaldson, ibid.
14. See especially the work of Debra Buchwald, M.D., Muhammad Yunus, M.D., and Dan Buskila, M.D.
15. Laurence Bradley, Ph.D., "Fibromyalgia: Central Factors in Its Etiopathogenesis", Fibromyalgia Frontiers, Vol. 3, #4, Fall 1995.
16. 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 (FMS): Changes in CSP SP Over Time, Parallel Changes in Clinical Activity," Arthritis & Rheumatism, Abstract Supplement, Vol. 41, #9, September 1998.
17. 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.
18. Muhammad Yunus, M.D., "Dysfunctional Spectrum Syndrome: A Unified Concept for Many Common Maladies," Fibromyalgia Frontiers, Vol. 4, No. 4, Fall 1996, p. 3.
19. 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.
20. Carlos Abud-Mendoza et al, " Hypothalamus-Hypophysis-Thyroid Axis Dysfunction in Patients with Refractory Fibromyalgia," Arthritis & Rheumatism, Abstract Supplement, Vol. 40, #9, September 1997.
21. Muhammad Yunus, M.D., "Fibromyalgia and Other Overlapping Syndromes: The Concept of Dysregulation Spectrum Syndrome," seminar presentation hosted by FMAGW, on 11/10/97, Bethesda, MD. See also, Muhammad Yunus, "Dysfunction Spectrum Syndrome: A Unified Concept for Many Common Maladies," Fibromyalgia Frontiers, Vol. 4, No. 4, Fall 1996.
22. "Basic and Clinical Research for Fibromyalgia," National Institutes of Health, RFA#AR-98-006, March 26, 1998.
23. See also Jerome Groopman, "Super Aspirin", The New Yorker, 6/15/98.
24. Ortho-McNeil Pharmaceutical, Letter to Health Care Professionals, 3/20/96.
25. Hanna Meyer, L.M.T., C.N.M.T., Presentation given to FMAGW on 3/7/98.
26. S. Muris, PT, "Exploring Body Work for FMS Self-Care," Fibromyalgia Frontiers, Vol. 4, No. 3, Summer 1996, p.4.
27. "EEG-Driven Stimulation: Hitting the 'Reset Button' in Fibromyalgia Patients," Fibromyalgia Frontiers, Vol. 6, #4, July/August 1998.
28. Eric D. Terrell, D.C., "Chiropractic & Chronic Pain", Fibromyalgia Frontiers, Vol. 5, No. 4, Fall 1997.
29. "Panel on Nutrition," a speaker presentation at FMAGW, 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.
30. Complementary and Alternative Medicine at the NIH, Vol. 5, No. 1, January 1998.
31. Russell Rothenberg, M.D., "To The Newly Diagnosed Patient," Fibromyalgia Frontiers, Vol. 3, No. 1, Winter 1995, p. 7.
10. FOR MORE INFORMATION ON FMS-RELATED DISORDERS
Arthritis Foundation
National Headquarters
P.O. Box 7669
Atlanta, GA 30357-0669
Phone: 800/283-7800 (toll-free)
Website: www.arthritis.org
Association for Repetitive Motion Syndrome (ARMS)
PO Box 471973
Aurora, CO 80047-1973
Center for Mind-Body Medicine
5225 Connecticut Avenue, NW Suite 414
Washington, DC 20015
Phone: 202/966-7338
The CFIDS Association of America, Inc.
PO Box 220398
Charlotte, NC 28222-0398
Phone: 800/442-3437 (toll-free)
Fax: 704/365-9755
Website: www.cfids.org
International Foundation for Functional Gastrointestinal Disorders (IFFGD)
PO Box 17864
Milwaukee, WI 53217
Phone: 414/964-1799 or
888/964-2001 (toll-free)
Website: www.iffgd.org
Interstitial Cystitis Association (ICA)
51 Monroe Street, Suite 1402
Rockville, MD 20850
Phone: 301/610-5300
Website: www.ichelp.org
Email: icamail@ichelp.org
Jaw Joints & Allied Musculoskeletal Disorders Foundation, Inc. (JJAMD)
Forsyth Research Institute
140 The Fenway
Boston, MA 02115-3799
Fax: 617/267-9020
Website: www.healthtouch.com
Lyme Disease Foundation
One Financial Plaza,18th Floor
Hartford, CT 06103-2610
Phone: 860/525-2000 or
800/886-LYME (toll-free 24-hr. line)
Fax: 860/525-TICK
Email: lymefnd@aol.com
Website: www.lyme.org
Massachusetts CFIDS Association
P.O. Box 690305
Quincy, MA 02269-0305
Phone: 617/471-5559
Fax: 617/472-5157
Website: www.masscfids.org
Mitral Valve Prolapse Center
880 Montclair Road
Suite 280
Birmingham, AL 35213
Phone: 205/592-5765 or
800/541-8602 (toll-free)
Fax: 205/592-5707
Multiple Chemical Sensitivity (MCS) Referral & Resources
508 Westgate Road
Baltimore, MD 21229-2343
Phone: 410/362-6400
Fax: 410/362-6401
National CFIDS Foundation
103 Aletha Road
Needham, MA 02192
Phone: 781/449-3535
Fax: 781/449-8606 or
781/925-3393
Website: www.cfidsfoundation.org
National Gulf War Resource Center
1224 M Street, NW
Washington, DC 20005
Phone: 202/628-2700, ext. 162
Fax: 202/628-6997
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Institutes of Health
Website: www.nih.gov/niams
Online newsletter: www.nih.gov/niams/news
NIAMS Clearinghouse
1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301/495-4484
TTY: 301/565-2966
Faxback "Fast Facts" Information Service: 301/881-2731
Website: www.nih.gov/niams
National Library of Medicine
c/o National Institutes of Health
Web Medline Searches: www.ncbi.nlm.nih.gov
National Vulvodynia Association (NVA)
PO Box 4491
Silver Spring, MD 20914-4491
Phone: 301/299-0775
Fax: 301/299-3999
Website: www.nva.org
Nat. Center for Complementary & Alternative Medicine (NCCAM)
National Institutes of Health
Website: http://altmed.od.nih.gov
OCAM Clearinghouse
PO Box 8218
Silver Spring, MD 20907-8218
Phone: 888/644-6226 (toll-free)
Restless Legs Syndrome (RLS) Foundation, Inc.
819 Second Street, SW
Rochester, MN 55902
Phone: 507/287-6465
Fax: 507/287-6312
Email: rlsfoundation@rls.org
Website: www.rls.org
Sjögren's Syndrome Foundation Inc. (SSF)
333 N. Broadway, Suite 2000
Jericho, NY 11753
Phone: 516/933-6365
Info Line: 800/475-6473 (toll-free)
Fax: 516/933-6368
Website: www.w2.com/ss.html
Society for Mitral Valve Prolapse Syndrome
PO Box 431
Itasca, IL 60143-0431
Phone: 708/250-9327
Fax: 708/773-0478
The TMJ Association, Ltd.
PO Box 26770
Milwaukee, WI 53226-0770
Phone: 414/259-3223
Website: www.tmj.org
TMJ & Stress Center
PO Box 89698
Tucson, AZ 85752
Phone: 520/744-8000
Website: www.myodata.com
The Vulvar Pain Foundation
PO Drawer 177
203½ North Main Street, Suite 203
Graham, NC 27253
Phone: 910/226-0704 (Tues/Thurs)