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Fibromyalgia: Fact or Fiction?


Healthcare Traveler

"I didn't know I would be in this much pain at age 35," thought Amy. She had been experiencing more and more pain and muscle stiffness this past year. It especially occurred upon awakening each morning, usually after a fitful night of sleep. Irritated, Amy yelled out loud to no one in particular, "I seem to sleep all the time, yet I never feel fully rested!"

She finally decided to seek some professional advice. After visiting three different physicians, Amy was surprised and frustrated with a diagnosis of fibromyalgia. She had always believed that the disorder was a psychiatric problem.

In reality, fibromyalgia syndrome (FMS) is not a psychiatric condition. This health problem - under-diagnosed and of unknown etiology - is associated with non-inflammatory pain and tenderness in muscles, ligaments, and joints.

Originally classified in the beginning of the 20th century as an inflammatory disease, it was formerly named fibrositis. In the mid-1940s, researchers discovered fibromyalgia syndrome was associated with depression and stress. This correlation led to the common thought that FMS was purely a psychological disorder. More recent studies have dispelled this myth and have asserted that fibromyalgia syndrome is a real physiological disorder, although its exact causes have remained elusive.

In the United States alone, three to six million persons (mostly Caucasians) are afflicted with FMS. While it can also affect children, the elderly, and men, the syndrome is most commonly associated with women between the ages of 20 and 50. This gender gap is substantial, with research showing a ratio of nine female diagnoses to every male diagnosis.

Although the condition is typically treated in an outpatient setting, travelers may care for hospitalized patients with FMS as a secondary diagnosis. It is essential, therefore, for mobile professionals to understand the disease's etiology and symptoms, relevant diagnostic tools, and treatment options in order to assist individuals in managing pain and maintaining functionality.

CLASSIFYING FMS
Considered a rheumatologic disease, FMS is identified by a long-standing pain phenomenon that occurs in a defined pattern for more than three months. This pain originates in the tendons, ligaments, bursae, and muscle tissue, but without the inflammation originally described when the condition was called fibrositis.

Distinguished in part by abnormal sensory processing of pain signals, the disorder has been categorized as either primary or secondary. In primary FMS, there is no underlying diagnosis, while with secondary FMS, a probable cause exists.

Experts believe primary FMS could be related to non-restorative sleep or the inability to get enough of a deep sleep state. "The Physician's Guide to Fibromyalgia Syndrome" notes that abnormal amounts of alpha activity have been reported on electroencephalograms of FMS patients during deep sleep. Since the alpha stage is the lightest sleep recorded, those with increased alpha sleep do not awaken rested and refreshed, even if they have been "asleep" for eight hours.

In secondary FMS, according to the MediFocus Guide on Fibromyalgia, probable cause might be the result of trauma, such as a car accident, or an overlay of a mechanical or skeletal malalignment. The disorder may present after several years of living with hypothyroidism, lupus, or rheumatoid arthritis. Symptoms could also develop after receiving a diagnosis of Lyme disease, undergoing a silicone implant, experiencing a viral or bacterial infection, becoming exposed to toxic chemicals, or working in a "sick" building. Repetitive motion injuries have also been implicated. While these triggering events probably do not directly cause FMS, scientists believe they can stimulate an underlying physiological predisposition.

FMS SYMPTOMS
The uniqueness of FMS is its lack of standard course - no two persons experience exactly the same characteristics. One constant symptom, however, is pain.

Described as deep aching, radiating, gnawing, shooting, or burning, it can range from mild to severe and is felt deep within the muscles, ligaments, or tendons. Typically, the body aches with stiffness upon arising in the morning. The degree of ache may decrease during the daytime and increase again toward the evening hours. Symptoms are exacerbated by exertion, cold, damp weather, changes in barometric pressure, anxiety, and stress. Muscle spasms and cramping often are more common at nighttime.

Other symptoms, which are insidious in onset, may include sleep disturbances resulting in restlessness, tooth grinding, or sleep walking; fatigue; headaches; dizziness; depression; and hypersensitivity to temperature (especially the cold and air conditioning) and chemicals (including perfumes, exhaust, and cigarette smoke). Loss of grip strength; a feeling of puffiness in the hands, arms, or body; dry eyes or mouth; and deficits in short-term memory, attention, and coordination have also been reported. Additionally, women might be prone to the irritable bladder symptoms of female urethral syndrome.

Men tend to have fewer and milder symptoms than women. However, studies have shown that 44 percent of males with FMS have also been found to suffer from obstructive sleep apnea, a potentially life-threatening disorder.

As if this weren't enough, FMS is associated with a number of diseases, and its symptoms overlap or mimic those of other conditions, making it difficult to diagnose.

Rheumatoid arthritis, polymyalgia rheumatica, hypothyroidism, cervical and lower back degenerative diseases, Lyme disease, and chronic fatigue syndrome (CFS) are just some of these illnesses. Others include sleep disorders, depression, HIV infection, Sjogren's Syndrome, temporomandibular joint dysfunction syndrome (TMJ), epicondylitis, myofascial pain syndrome, fibrositis syndrome, and irritable bowel syndrome (IBS). Individuals with FMS may also experience symptoms associated with Gulf War Syndrome, premenstrual syndrome, and reflex sympathetic dystrophy.

A QUICK READ

Fibromyalgia & Chronic Myofascial Pain Syndrome:
A Survival Manual (2nd edition)

Devin Starlanyl, MD, Mary Ellen Copeland & Christopher R. Brown
New Harbinger Publications
5674 Shattuck Avenue
Oakland, CA 94605
www.newharbinger.com

Fibromyalgia Aware Magazine
www.fmaware.org/magazine.html

Fibromyalgia: Managing the Pain
The Fibromyalgia Survivor
Understanding Post-Traumatic Fibromyalgia

Mark Pellergrino, MD
ANADEM Publishing
3620 North High Street
Columbus, OH 43214
www.anadem.com

Fibromyalgia Network Newsletter
P.O. Box 31750
Tucson, AZ 85751-1750
800-853-2929
www.fmnetnews.com

Making Sense of Fibromyalgia
Daniel J. Wallace, MD
& Janice Brock Wallace
Oxford University Press
198 Madison Avenue
New York, NY 10016
www.oup-usa.org

RULING OUT OTHER CONDITIONS
Since people with FMS have normal muscle and joint assessments, blood and urine tests, x-rays, MRIs, and nerve conduction studies, such diagnostic and laboratory workups are ordered strictly to rule out other conditions. Thermography, while controversial, is another assessment tool used for this purpose.

The most frequently requested labs include tests for CBC, various blood chemistries and electrolytes, sedimentation rate, antinuclear antibodies, rheumatoid factor, creatine phosphokinase (CPK), and aldolase. Thyroid function tests and a urinalysis are also often ordered.

ASSESSMENT AND DIAGNOSIS
Clearly, a detailed physical examination and patient history are crucial to exact a correct diagnosis. Travelers can work with other members of the healthcare team to document the existence of pain, note behavioral patterns, and record other potentially similar disorders. Professionals, in particular, can determine whether certain foods appear to precipitate symptoms and recommend dietary changes.

Since 1990, when the American College of Rheumatology (ACR) identified specific criteria for diagnosing FMS, qualified professionals have included a "tender point" evaluation as part of the physical examination process. This vital step is generally performed by rheumatologists, who have been more involved in the diagnosis and treatment of FMS than any other healthcare provider.

While there are over 75 tender points on the body, only 18 (nine bilaterally) are relative to fibromyalgia syndrome: the occiput (back of the head) at the sites of muscle insertions, low cervical (C5-C7), trapezius, supraspinatus, second rib, lateral epicondyle (elbow), gluteal (buttocks), greater trochanter (hip), and knees. For a definitive diagnosis, at least 11 of these specific areas must be painful under pressure, hence the term "tender points." Additionally, the pain must be widespread, in all four quadrants, and last for at least three months. Patients must suffer from general fatigue, as well.

When assessing individuals, travelers should remember that FMS is not a unilateral condition. FMS is indicated in patients with pain in both the left and right sides of the body, as well as pain above and below the waist. Another diagnostic criterion is axial skeleton pain in the cervical spine, anterior chest, thoracic spine, or lower back.

TRADITIONAL TREATMENT OPTIONS
Treatment for FMS is multidimensional, with drug therapy, exercise, and dietary changes often prescribed. Such traditional regimens are geared toward improving patients' quality of sleep, as well as reducing their pain.

Drug Therapy
Because deep sleep is crucial for antibody production, tissue repair, and perhaps even the regulation of various neurotransmitters, hormones, and immune system chemicals, most treatment focuses on managing concomitant sleep disorders. Medications that increase serotonin and norepinephrine levels are commonly prescribed. Examples include Elavil, Flexeril, Sinequan, Paxil, Serzone, Xanax, and Klonopin. Narcotics usually are not recommended for FMS because of the potential for dependence and addiction. Since FMS is not an inflammatory condition, corticosteroids have not been shown to be effective. Other drug therapies currently under consideration include ubiquinone 10 and succinic acid.

Exercise
Mild, low-impact aerobic exercise in the late afternoon or early evening appears to be of central importance in helping with the pain of FMS, as well as in assisting with adequate sleep. Experts suggest regimens be started slowly with just three to five minutes of physical activity a day, gradually increasing as tolerated up to 20 to 30 minutes daily. It appears the systemic effects benefit patients more than any direct effect to the exercised muscles.

Walking, bicycling, and using home exercise equipment are good choices. Aerobic water exercise can be beneficial, but if the water is too cold, those with FMS may do poorly. Travelers should be aware that too much exercise - or the wrong kind of physical activity - could exacerbate FMS symptoms. For the approximate five percent of the general FMS population that does not respond well to exercise regimens, aggressive physical therapy is important.

A Healthy Diet
Although there are no dietary restrictions with FMS, maintaining a healthy well-balanced diet is helpful, as is weight loss for obese patients. Several reports indicate that fish oil, magnesium/malic acid combinations of vitamins (particularly B12) may be effective for controlling FMS symptoms. In addition, eating immunity boosting antioxidants and phytochemicals may work together to help maximize energy and alertness while minimizing fatigue and lethargy. Travelers can also encourage patients to drink at least eight glasses of water each day - a vital step to flushing out toxins.

If particular foods seem to appear to trigger their symptoms, patients should be advised to decrease, if not eliminate, these items from their diets entirely. Examples of some products to totally avoid include high fat dairy foods, white sugar, NutraSweet and saccharine, white flour, fried foods, preservatives, junk food, salt, and red meat. It is also recommended that FMS patients stay away from caffeinated and carbonated beverages, chocolate, and alcohol. Avoiding tobacco, as well as prolonged periods of direct sun exposure, is also suggested.

A diet consisting of a 40 percent carbohydrate/30 percent protein/30 percent fat ratio - featured in Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual, by Devin Starlanyl, MD - is best according to www.fibromyalgiasupport.com and www.tidalweb.com/fms/diet.shtml. Professionals and patients alike who are interested in finding healthy recipes that use this 40/30/30 principle can visit www.fibrofog.com.

ALTERNATIVE THERAPIES
In addition to encouraging patients to relax by increasing their social interactions and time spent on vacations and hobbies, travelers can offer suggestions that may have a positive effect on FMS. Although there are no conclusive studies to promote the efficacy or safety of most non-traditional treatments for FMS, alternative approaches designed to facilitate stress reduction may improve coping mechanisms.

Examples of such regimens include trigger point injections with one percent lidocaine, acupuncture, acupressure, relaxation techniques, Tai Chi, hypnosis, massage, and biofeedback. Other complementary therapies involve electrical stimulation (not TENS), electrophobe, ultrasound, hydrotherapy, hot packs, and osteopathic manipulation.

FMS ADVOCACY ORGANIZATIONS

American College of Rheumatology
1800 Century Place, Suite 250
Atlanta, GA 30345
404-633-3777
acr@rheumatology.org
www.rheumatology.org

American Fibromyalgia Syndrome Association
6380 E. Tanque Verde, Suite D
Tucson, AZ 85715
520-733-1570
www.afsafund.org/resource.htm

Arthritis Foundation
P.O. Box 7669
Atlanta, GA 30357-0669
800-283-7800
www.arthritis.org

Fibromyalgia Information Resources
P.O. Box 690402
San Antonio, TX 78269
800-366-6056
www.immunesupport.com

National Fibromyalgia Association
2238 N. Glassell Street, Suite D
Orange, CA 92865
714-921-0150
NFA@fmaware.org
www.fmaware.org

National Institute of Arthritis and
Musculoskeletal and Skin Diseases

Information Clearinghouse
National Institutes of Health
1 AMS Circle
Bethesda, Maryland 20892-3675
877-22-NIAMS
niamsinfo@mail.nih.gov
www.niams.nih.gov

Oregon Fibromyalgia Foundation
1211 SW Yamhill, Suite 303
Portland, OR 97205
503-892-8811
www.myalgia.com

THE REAL WORLD
While FMS is neither a progressive nor a life-threatening condition, it is chronic, with symptoms that wax and wane. Even though the intensity of symptoms may vary, they rarely disappear or go into complete remission. As a result, the impact the disorder has on activities of daily living (ADLs) varies from person to person. Some are able to live full lives, while others are debilitated from the disease.

For example, patients may experience difficulties working due to pain, failure of their employer to understand FMS, cognitive impairment, fatigue, stress, and decreased stamina or endurance. Cold or damp work environments can amplify their discomforts.

Surprisingly, 90 percent of persons with FMS are able to work if they wish to do so, and in fact, 67 percent work full-time. Up to 30 percent of these individuals, however, had to change positions due to the disorder and others had to alter their job in some way.

According to a study by Dedra Buchwald, MD, published in Rheumatic Disease Clinics of North America, people who met the criteria for both FMS and CFS tend to be more at the severe end of the spectrum of symptoms and are more likely to become work-disabled. Her findings underscore the importance of recognizing concurrent FMS and CFS.

In order to provide competent and sensitive care, mobile professionals must be aware of the types of challenges faced by FMS sufferers and realize that emotional and physical support systems are very important to them. Whenever possible, travelers can share educational resources and local support networks with patients, their families, and coworkers.

Indeed, education regarding the syndrome and its treatment is critical in providing the opportunity for individuals to be proactive in controlling their symptoms and maximizing their functioning. Self-help discussions, chat rooms, and support groups can be of tremendous value as an effective way of obtaining emotional assistance. Other good resources are the American Fibromyalgia Syndrome Association (520-733-1570; www.afsafund.org) and the Fibromyalgia Network (800-853-2929; www.fmnetnews.com).

RESEARCH TRENDS
Current research has shown that serum levels of serotonin and its dietary precursor, tryptophan, are low in individuals with FMS. This is significant as some of the medicines used to treat FMS block serotonin reuptake (like Amitriptyline). Melatonin, norepinephrine, dopamine, and other chemicals that help to control pain, mood, sleep, and the immune system are also unusually produced in persons with FMS.

A number of neuroendocrine abnormalities have been identified, as well. People with diagnosed fibromyalgia syndrome, for instance, have a higher concentration of substance P, a peripheral pain neurotransmitter, in their cerebrospinal fluid. While this compound can be present at a level three times that found in other individuals' spinal fluid, concentrations of substance P are normal in FMS patients' blood. This discovery is important since an elevated level of substance P can make individuals hypersensitive, thus resulting in an increased awareness of pain.

Additional research into neurohormonal and bio-chemical abnormalities, including substance P, is ongoing. Scientists are also contemplating a possible relationship between viral illness and immune abnormalities, as well as one between trauma and the development of FMS. Potential roles of the adrenal gland and faulty regulation by the thyroid hormone are also being investigated.

Many fibromyalgia clinical trials are also underway. Patients and providers interested in locating information on current studies can visit the Clinical Trials Listing Service at www.centerwatch.com.

AMY REVISITED
After several months of successfully reducing the stress in her life, Amy now actively tries to get enough good sleep each night, to practice more healthy eating, and to exercise regularly. Perhaps most important, she paces herself. With these lifestyle changes, Amy finds that she feels better and is able to carry on with her normal daily activities. She even regularly corresponds in a chat room with a FMS buddy from the other side of the country.

To help her family and friends relate to her condition, Amy had them think back to the last time they experienced a bad case of the flu bug. Every muscle in their bodies probably ached and they felt devoid of energy. This helped them better relate to her ongoing chronic concerns. What has Amy learned from this incredible journey with FMS? She shares, "You just have to adjust."

Healthcare travelers have the opportunity to assist a variety of FMS patients nationwide in altering their behaviors to reduce pain, improve functionality, and increase quality of life. By acting as patient advocates, mobile providers can offer the encouragement and sensitivity necessary to help individuals manage this insidious and debilitating condition.

References
Centerwatch Clinical Trials Listing Service. (n.d.) Quick search results. Retrieved April 30, 2002, from www.centerwatch.com/search.asp?qu=fibromyalgia&FreeText=off

Griffith's 5-minute clinical consult. (2001). Retrieved March 18, 2002, from personal digital assistant (Palm Pilot).

Lorden, L. (2002, March 27). It's a guy thing: Men with fibromyalgia. Retrieved March 18, 2002, from www.Fibromyalgiasupport.com/library/showarticle.cfm/ID/3466/T/FM

MediFocus. (2001). Fibromyalgia (RH002). MediFocus guide preview retrieved January 10, 2002, from www.medifocus.com/cgi-bin/order/ alpha.html?id=V7NigDTc&mv_arg=F

Nye, D. (1998). A physician's guide to fibromyalgia syndrome. Retrieved March 18, 2002 from the Missouri Arthritis Rehabilitation Research and Training Center Web site: www.hsc.missouri.edu/~fibro/fm-md.html

ProHealth, Inc. (2000, December 12). Fibromyalgia Q&A and key words. Retrieved March 18, 2002, from www.ImmuneSupport.com/library/fmdiagnosis.cfm/id/2815

S & B Associates Ltd., Inc. (n.d.) The FM diet. Retrieved March 18, 2002, from www.fibrofog.com/About_Us/Colleen/Article_3_C_B_/article_3_c_b_.htm

www.tidalweb.com. (n.d.) The fibromyalgia diet: 40/30/30. Retrieved March 18, 2002, from www.tidalweb.com/fms/diet.shtml

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