National Fibromyalgia Association - May 2007 Charity-of-the-Month
National Fibromyalgia Association
2200 N. Glassell St., Suite A
Orange, CA 92865
The National Fibromyalgia Association is a 501(c) 3 nonprofit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia.
Over the past ten years, the NFA has worked tirelessly to build national awareness, provide patient assistance and support, help educate the medical community, facilitate research, build collaboration between the patient and scientific communities, and develop a cohesive and motivated patient advocacy effort to ensure improved diagnosis and treatment modalities for people affected by FM. Founded in 1997 in Orange, California, by Lynne Matallana and Karen Lee Richards, the National Fibromyalgia Association (NFA) is the largest nonprofit [501(c)3] organization for people with fibromyalgia and other chronic pain illnesses.
Fibromyalgia Community Needs Statement
Fibromyalgia (FM) is a common, complex, chronic pain syndrome that is recognized by major health care organizations. For years this debilitating illness was thought to be psychosomatic in nature, but recent objective scientific findings have revealed an array of physiological abnormalities related to disordered pain processing in the patients brain and spinal cord. Pain is amplified in the central nervous system so that a stimulus that would not ordinarily be painful to a normal person can cause excruciating pain in a person with FM. Experts believe that between 3-6% of the worlds population (75-90% being women) have this disorder. It is estimated that between10 to15 million people in the United States suffer from FM and it is estimated that the annual direct costs of FM exceeds $20 billion with disability rates nearing 25% compared to 2.2% in the overall US population.
What is Fibromyalgia?
Fibromyalgia (FM) is a chronic pain illness characterized by widespread musculoskeletal aches, pain, and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time.
Who is affected?
It is estimated that approximately 5-7% of the U.S. population has FM. Although a higher percentage of women of all ages and races are affected, it does strike men and children. Because of its debilitating nature, fibromyalgia has a serious impact on patients' families, friends and employers, as well as society at large.
What are the symptoms?
FM is characterized by the presence of multiple tender points and a constellation of symptoms.
The pain of FM is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. FM pain has been described as deep muscular aching, throbbing, twitching, stabbing and shooting pain. Neurological complaints such as numbness, tingling and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.
In today's world many people complain of fatigue; however, the fatigue of FM is much more than being tired. It is an all-encompassing exhaustion that interferes with even the simplest daily activities. It feels like every drop of energy has been drained from the body, which at times can leave the patient with a limited ability to function both mentally and physically.
Many fibromyalgia patients have an associated sleep disorder that prevents them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep.
Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and impaired coordination.
How is it diagnosed?
Currently there are no laboratory tests available for diagnosing fibromyalgia. Doctors must rely on patient histories, self-reported symptoms, a physical examination and an accurate manual tender point examination. This exam is based on the standardized ACR criteria. Proper implementation of the exam determines the presence of multiple tender points at characteristic locations.
It is estimated that it takes an average of five years for a FM patient to get an accurate diagnosis. Many doctors are still not adequately informed or educated about FM. Laboratory tests often prove negative and many FM symptoms overlap with those of other conditions, thus leading to extensive investigative costs and frustration for both the doctor and patient. Another essential point that must be considered is that the presence of other diseases, such as rheumatoid arthritis or lupus, does not rule out an FM diagnosis. Fibromyalgia is not a diagnosis of exclusion and must be diagnosed by its own characteristic features.
To receive a diagnosis of FM, the patient must meet the following diagnostic criteria:
* Widespread pain in all four quadrants of the body for a minimum duration of three months
* Tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied (see figure above)
What causes FM?
While the underlying cause or causes of FM still remain a mystery, new research findings continue to bring us closer to understanding the basic mechanisms of fibromyalgia. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function.
Recent studies show that genetic factors may predispose individuals to a genetic susceptibility to FM. For some, the onset of FM is slow; however, in a large percentage of patients the onset is triggered by an illness or injury that causes trauma to the body. These events may act to incite an undetected physiological problem already present.
Exciting new research has also begun in the areas of brain imaging and neurosurgery. Ongoing research will test the hypothesis that FM is caused by an interpretative defect in the central nervous system that brings about abnormal pain perception. Medical researchers have just begun to untangle the truths about this life-altering disease.
How is FM treated?
One of the most important factors in improving the symptoms of FM is for the patient to recognize the need for lifestyle adaptation. Most people are resistant to change because it implies adjustment, discomfort and effort. However, in the case of FM, change can bring about recognizable improvement in function and quality of life. Becoming educated about FM gives the patient more potential for improvement.
An empathetic physician who is knowledgeable about the diagnosis and treatment of FM and who will listen to and work with the patient is an important component of treatment. It may be a family practitioner, an internist, or a specialist (rheumatologist or neurologist, for example). Conventional medical intervention may be only part of a potential treatment program. Alternative treatments, nutrition, relaxation techniques and exercise play an important role in FM treatment as well. Each patient should, with the input of a healthcare practitioner, establish a multifaceted and individualized approach that works for them.
Over-the-counter pain medications, such as acetaminophen or ibuprofen, may be helpful in relieving pain. The physician may decide to prescribe one of the newer non-narcotic pain relievers (e.g. tramadol) or low doses of antidepressants (e.g. tricyclic antidepressants, serotonin reuptake inhibitors) or benzodiazepines. Patients must remember that antidepressants are "serotonin builders" and can be prescribed at low levels to help improve sleep and relieve pain. If the patient is experiencing depression, higher levels of these or other medications may need to be prescribed. Lidocaine injections into the patient's tender points also work well on localized areas of pain.
An important aspect of pain management is a regular program of gentle exercise and stretching, which helps maintain muscle tone and reduces pain and stiffness.
Improved sleep can be obtained by implementing a healthy sleep regimen. This includes going to bed and getting up at the same time every day; making sure that the sleeping environment is conducive to sleep (i.e. quiet, free from distractions, a comfortable room temperature, a supportive bed); avoiding caffeine, sugar and alcohol before bed; doing some type of light exercise during the day; avoiding eating immediately before bedtime and practicing relaxation exercises as you fall to sleep. When necessary, there are new sleep medications that can be prescribed, some of which can be especially helpful if the patient's sleep is disturbed by restless legs or periodic limb movement disorder.
Learning to live with a chronic illness often challenges an individual emotionally. The FM patient needs to develop a program that provides emotional support and increases communication with family and friends. Many communities throughout the United States and abroad have organized fibromyalgia support groups. These groups often provide important information and have guest speakers who discuss subjects of particular interest to the FM patient. Counseling sessions with a trained professional may help improve communication and understanding about the illness and help to build healthier relationships within the patient's family.
Complementary therapies can be very beneficial. These include: physical therapy, therapeutic massage, myofascial release therapy, water therapy, light aerobics, acupressure, application of heat or cold, acupuncture, yoga, relaxation exercises, breathing techniques, aromatherapy, cognitive therapy, biofeedback, herbs, nutritional supplements, and osteopathic or chiropractic manipulation.
What is the prognosis?
Better than ever before! The efforts of individuals, support groups, organizations and medical professionals to help improve the quality of life for people with FM are starting to pay off. Better ways to diagnose and treat FM are on the horizon. The symptoms of FM can vary in severity and often wax and wane, but most patients do tend to improve over time. By actively seeking new information, talking to others who have FM, re-evaluating daily priorities, making lifestyle changes, and working hard to keep a hopeful attitude, the FM sufferer can become the FM survivor!
Fibromyalgia AWARE is the first consumer magazine to address the needs and concerns of people affected by Fibromyalgia and overlapping conditions.
Published by the National Fibromyalgia Association three times a year, Fibromyalgia AWARE is a comprehensive, reliable resource that will help to improve the quality of life of all those affected by Fibromyalgia and overlapping conditions. The magazine includes:
* The latest news in research
* Helpful information on general health and well-being
* A balanced approach to treatment options
* Education on matters concerning lifestyle and self-management techniques
* A medical supplement for physicians and other health care professionals
FUNDRAISING & OTHER EVENTS
August 19 - 24, 2007 in Washington, DC.
The National Fibromyalgia Association is pleased to announce our 3rd Annual Leaders Against Pain International Coalition Media & Advocacy Training Scholarship Program to attend MYOPAIN 2007.
The NFA will be selecting up to 100 support group leaders from around the world to receive the NFAs LAP III Scholarship. The successful candidates will be awarded a financial scholarship that will afford them the opportunity to attend the MYOPAIN Societys International Congress and participate in NFAs 3rd Annual Leaders Against Pain Coalition Media and Advocacy Training Seminar.
DEADLINE: All submissions to NFAs 2007 LAP Scholarships must be received by Friday, June 1, 2007 at 5pm. submission information
San Antonio Medical School August 18-24, 2007
7th World Congress on Myofascial Pain Syndrome and Fibromyalgia Jointly Sponsored by the International MYOPAIN Society and the University of Texas Health Science Center at San Antonio Medical School August 18-24, 2007... more information
August 22-23, 2007
3rd Annual Leaders Against Pain Seminar
Full-day Media & Advocacy Training Seminar
National Fibromyalgia Association
2200 N. Glassell St., Suite A
Orange, CA 92865