Fibromyalgia Fundamentals

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1 Fibromyalgia Fundamentals There s no time to waste! NFP National Fibromyalgia Partnership, Inc. a 501(c)(3) non-profit organization, est.1992 website:

2 What Is Fibromyalgia? Fibromyalgia (or FM for short) is a complex, chronic condition which causes widespread pain and fatigue as well as other symptoms. Unlike arthritis, FM does not affect the joints directly or cause swelling there. Rather, it produces tenderness throughout the body along with pain and stiffness in muscles and soft tissue (including those which surround joints). The pain of FM usually consists of aching or burning described as head-to-toe and muscle spasm. Pain can vary in severity from day to day. Sometimes, it can be so intense that it interferes with the performance of even simple tasks, while other times it may cause only moderate discomfort. Likewise, the fatigue of FM also varies, ranging from a mild, tired feeling to the exhaustion of a severe, flu-like illness. The exact prevalence of FM in the U.S. population has not been thoroughly studied, but conservative estimates place the total between 4 and 6 million. Other experts believe the true number is closer to 10 million. Fibromyalgia disproportionately affects women, many 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. FM-Related Symptoms/Syndromes In addition to pain and fatigue, a number of symptoms 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. Possible symptoms include: 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. Sleep Disturbances: Despite sufficient amounts of sleep, FM patients may awaken feeling unrefreshed, as if they have barely slept. Alternatively, they may have trouble falling asleep or staying asleep. Cognitive Difficulties: These include difficulty concentrating, spaciness or fibro-fog, memory lapses, difficulty thinking of words/names, and feeling overwhelmed when engaged in multiple tasks. -2-

3 Paresthesia: Numbness or tingling, particularly in the hands or feet, sometimes accompanies FM. The sensation, usually called paresthesia, can also be described as prickling or burning. 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. In addition, pain and muscle tightness may cause shallow breathing and postural problems. Difficulty With Balance/Light-Headedness: 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 visually tracking objects. Alternatively, weak muscles and/or myofascial trigger points in the neck may cause dizziness or unsteadiness. Also, some FM patients develop a condition known as neurally mediated hypotension which causes a drop in blood pressure and heart rate upon standing, resulting in lightheadedness, nausea, and difficulty thinking clearly. Sensory Sensitivity/Allergic Symptoms: Hypersensitivity to light, sound, touch, and odors frequently occurs among those with FM. Persons with FM may also feel chilled or cold when others around them are comfortable; conversely, they may feel much warmer than others who are in a room with them. They may also have allergic-like reactions to various substances accompanied by itching, a rash, or non-allergic rhinitis with nasal congestion/discharge and sinus pain. Skin Complaints: Nagging symptoms, such as itchy, dry skin, may accompany FM. Dryness of the eyes and mouth (sicca syndrome) is not uncommon. 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 independently co-exist with fibromyalgia or occur as a result of severe FM, treatment is important as both can exacerbate FM and interfere with successful symptom management. -3-

4 In addition to the aforementioned symptoms, some syndromes can also co-exist with fibromyalgia, and this can further complicate matters. These include: Irritable Bowel Syndrome (IBS): 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. Genito-Urinary Disorders: FM patients may experience increased frequency of urination or increased urgency to urinate, typically in the absence of a bladder infection. These symptoms are usually referred to as irritable bladder syndrome. Some may develop a chronic, painful inflammatory condition of the bladder wall known as interstitial cystitis. 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. Myofascial Pain: A significant number of people with FM have myofascial pain due to trigger points, a neuromuscular condition in which hyper-irritable spots (trigger points) form in taut bands in skeletal muscle or its surrounding fascia, often as a result of injury, prolonged poor posture, illness, or repetitive motion at a work station. Not only are these spots very painful, but they also refer pain to other parts of the body in very predictable ways and cause limited range of motion, loss of strength and stamina, and a variety of non-pain symptoms. (Note: Myofascial trigger points should NOT be confused with the diagnostic tender points of FM.) Temporomandibular joint (TMJ) dysfunction, a condition which affects the jaw joints and surrounding muscles and occurs in an estimated one-third to one-half of those with FM, often includes significant myofascial pain. Restless Leg Syndrome (RLS): Some FM patients may develop a neurologic disorder known as restless leg syndrome (RLS) which involves a creepy crawly sensation in the legs and an irresistible urge to move the legs when at rest or when lying down. The syndrome may also involve periodic limb movements during sleep (PLMS) which can be very disruptive to both the patient and her/his sleeping partner. -4-

5 Official Diagnostic Criteria In 1990, official diagnostic criteria for FM were established by the American College of Rheumatology (ACR) to provide researchers with a standardized framework with which to classify patients for study. [Arthritis & Rhematism 1990;33(2)] Since then, the criteria have also been adopted in physicians offices to help in the diagnosis of fibromyalgia. 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 in anatomically specific locations that doctors look for in making a fibromyalgia diagnosis. According to the ACR requirements, a patient must have 11 of the 18 tender points 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. As the ACR criteria suggest, a FM diagnosis requires the hands-on evaluation of a patient by a skilled medical professional. Because routine laboratory and x-ray tests are often normal in patients, a complete medical history and physical exam are crucial for a correct diagnosis. Since FM symptoms can mimic several other diseases (i.e, lupus, polymyalgia rheumatica, thyroid disease, and MS), it is necessary to rule out such conditions before a diagnosis is made. What Causes Fibromyalgia? At one time, researchers believed that there was pathology in the muscles and soft tissues of people with FM. In recent years, however, research has documented abnormalities in the levels of several neurochemicals in the brain and spinal cord as well as irregularities in the functioning of the autonomic nervous system and the body s pain processing system, making it clear that FM is a centrally- mediated condition rather than one originating in the pe- -5-

6 riphery. Although genetic research in the field is still in its infancy, there is already evidence that FM runs in some families. The condition can be triggered in pre-disposed individuals by a traumatic injury to the body (i.e., an auto accident or fall), a severe illness/ surgery, or acute stress. In some people FM develops for no readily apparent reason. Fibromyalgia Management Treatment aims at managing FM symptoms to the greatest extent possible. Just as symptoms of fibromyalgia vary from patient to patient, so do successful treatments. Thus, medications or therapies that work well for one patient may be ineffective for another or may be poorly tolerated. Because successful FM treatment can involve a variety of medical professionals, patients usually benefit from a coordinated, team approach to the management of fibromyalgia. The most common treatments, used alone or in combination, are: Medications Analgesics are drugs that have been designed to relieve pain. As a group, analgesics help to take the edge off of pain or to combat flare-ups. Those commonly used to treat the less severe pain of fibromyalgia include acetaminophen (e.g., Tylenol) and non-steroidal antiinflammatory medications (NSAIDs) with analgesic properties (i.e., aspirin, ibuprofen). Narcotic pain relievers are usually reserved for managing severe pain. Ultracet (tramadol hydrochloride combined with acetaminophen) is a centrally acting, synthetic, opioid analgesic which helps to relieve pain in three ways. Laboratory studies performed by Ortho McNeil suggest that it acts directly on parts of the brain where pain is received and on the spinal cord, and it reduces the size of the pain signal passed from one nerve to another. Medications For Treating Centrally Mediated Pain and other symptoms have become more popular in recent years as more research points to the brain and central nervous system, and not the periphery of the body, as the source of dysfunction in FM. Tricyclic anti-depressants have been adopted for use in the treatment of FM because of their ability to boost levels of the brain neurochemical serotonin (usually -6-

7 deficient in FM patients) and to control pain and promote sleep. However, they are prescribed in lower dosages for fibromyalgia than for depression. Common tricyclics include Elavil, Pamelor, and Desyrel. Muscle relaxants help decrease pain in FM patients by minimizing muscle spasm and muscle pain. Because of their sedating qualities, they also help to improve sleep and are usually taken at bedtime. Commonly used muscle relaxants include: Flexeril, Soma, and Skelaxin. Selective Serotonin Reuptake Inhibitors (SSRI s) are a different form of medication which boosts serotonin levels but also help to keep serotonin available longer in the system after it has been secreted by the brain. SSRI s can help manage the fatigue, cognitive impairment, and depression associated with fibromyalgia and are often taken in the morning. Common SSRI s include Prozac, Zoloft, and Celexa. Selective Serotonin and Norepinephrine Reuptake Inhibitors (SSNRI s) are a new group of drugs that appear to work by increasing the activity of both serotonin and epinephrine in the brain. They include Effexor XR and the new drugs, Cymbalta and Savella, which have been FDA-approved for FM. Anti-convulsant medications are sometimes prescribed for the relief of neuropathic pain in FM patients. If tolerated, these medications can help relieve nerve irritation. Examples of anti-convulsants are Neurontin, Dilantin, Tegretol, and a new FDA-approved product, Lyrica, which is structurally related to the amino acid and neurotransmitter GABA. Anti-spastic medications, which were developed to treat the muscle spasm associated with MS and certain injuries to the spine, have also been adopted for use in FM. Two anti-spastic medications of interest in FM are Zanaflex and Baclofen. Sleep medicines are used for improving sleep, and they can also sometimes help decrease pain and allow better daytime functioning. Examples include Ambien, Lunesta, and Sonata. A new medication known as Xyrem is currently being studied for use in FM patients. Benzodiazepines, which are very sedating and usually taken at bedtime, are used occasionally to help patients feel calmer and cope with pain more effectively. They include Klonopin, Valium, and Xanax. Klonopin and -7-

8 Valium also have muscle relaxant properties that can be useful in FM treatment. Note: All medications can have adverse effects or may be dangerous if mixed with certain other medications. For your own safety, be sure to check with your doctor and pharmacist before starting a new medication. Physical Rehabilitation A wide variety of hands-on body work therapies are available to individuals with FM. The most widely used therapies include massage therapy, craniosacral therapy, myofascial release, muscle/joint re-education, gentle chiropractic treatment, ultrasound, and the application of hot/cold packs. Also widely recommended are gentle stretching exercises and low-impact exercises (i.e., walking/treadmill, aquatic exercise, gentle yoga, and bicycling). Stretching and exercise videotapes designed specifically for FM patients are commercially available. Complementary/Alternative Treatments Other approaches have proven very useful in FM management including: acupuncture, hypnotherapy, biofeedback, EEG neurotherapy, frequency specific microcurrent (FSM), postural training, qigong, relaxation therapy, and cognitive behavioral therapy. Cover graphic Copyright 2009, Whitebalance58 Dreamstime.com Whether you are a patient or a health care professional, membership in the National Fibromyalgia Partnership is a great way to stay informed about the latest in FM treatment and research. A one-year, tax-deductible membership ($25 North America; $30 all other countries) entitles you to a New Member Resource Packet and a subscription to our popular 24- page quarterly, Fibromyalgia Frontiers. To join, visit our website at: or mail your check/money order (USD) to: National Fibromyalgia Partnership, Inc. Post Office Box 160 Linden, VA USA -8-

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