The following is a list of links to various websites that might be of help to people with fibromyalgia and chronic fatigue syndrome.
The American Fibromyalgia Syndrome Association (AFSA) is a 501(c)3 nonprofit organization dedicated to research, education, and patient advocacy for fibromyalgia and chronic fatigue syndrome. AFSA is the only charitable organization whose primary mission is to seed research on these conditions. Over 90% of contributions go directly toward their mission.
Book Validates Fibro Symptoms - Tired of trying to defend yourself against ignorance and false perceptions about fibromyalgia? Most patients are.
Breaking Thru The Fibro Fog: Scientific Proof That Fibromyalgia Is Real by Kevin P. White, M.D., Ph.D., delivers exactly what the book title says. He rebuttals common misconceptions about fibromyalgia with a dose of logic and examples of well-known medical conditions that do not have a simple blood marker to make the diagnosis a slam-dunk. Throughout the book he comments how fibro should be no different!
“Many a person with fibromyalgia has felt the world that they knew before they became sick, totally blown apart,” writes White. “Shouldn’t that be enough to warrant at least a little bit of compassion and help from the rest of us?”
Get the respect you deserve from your doctors, family, friends, and co-workers. Learn more about White’s book, with the foreword written by I. Jon Russell, M.D., Ph.D., by visiting www.wortleyroadbooks.com. The retail price of the book is $24.95. On the above website you will be able to read White’s biography, his introductory chapter that explains why he wrote the book, and the table of contents. In addition, White is generously donating 15 percent of the proceeds to the American Fibromyalgia Syndrome Association (AFSA) to directly fund research on fibro.
Men with Fibromyalgia -
The author of this website feels that men have been “quiet too long.” This site addresses various issues surrounding men and fibromyalgia. If you are a man with fibromyalgia or have a spouse or male friend with the illness, visit this website. Women always welcome.
National Fibromyalgia Partnership, Inc. (NFP) – This non-profit organization provides valuable patient information and support group resources. The organization has a new downloadable brochure on myofascial pain, and some materials available in Spanish and French.
National Fibromyalgia Research Association (NFRA) - This fibromyalgia activist organization in Salem, OR, is dedicated to promoting education-related programs for fibromyalgia. The association funds physician education, public awareness, patient education, and advocacy.
Website: www.nfra.net | Phone: (503) 315-7257
FM-CFS Canada/Compassion in Action- Information in English and French for patients, caregivers, and physicians with links to support groups in all Canadian provinces.
National ME/FM Action Network – This Canadian, registered charitable organization is dedicated to helping the medical, legal, and general public in spreading awareness for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and fibromyalgia.
The International Association for Chronic Fatigue Syndrome (IACFS) is a nonprofit organization that promotes physician education and increased awareness of chronic fatigue syndrome.
CFIDS Association of America- Chronic fatigue syndrome, also known as chronic fatigue and immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis and by other names, is a complex and debilitating chronic illness that affects the brain and multiple body systems. This website offers an understanding of this devastating illness that often overlaps many symptoms with fibromyalgia.
Fibromyalgia: The misunderstood pain – This book written in Spanish is a resource for patients, family members, and treating physicians that describes the causes, symptoms, and various treatments for fibromyalgia. Above all, it describes how patients can enjoy real improvements and enhance their quality of life. “Fibromialgia: El dolor incomprehensible” is authored by Manuel Martínez Lavín, M.D., who is the director of rheumatology at the National Institute of Cardiology of Mexico.
This book is ONLY available in Spanish.
It is available online at Amazon.comby Aguilar publishers.
Food Elimination / Challenge Diet- These guidelines from the Jefferson Myrna Brind Center of Integrative Medicine in Philadelphia offer a suggested listing of foods to include and exclude, in addition to diet instructions.
CFIDS & Fibromyalgia Self Help - Bruce Campbell, Ph.D., offers low-cost online self-help courses and other resources for people affected by chronic fatigue syndrome and fibromyalgia through this non-profit organization.
The National Sleep Foundation (NSF) is an independent nonprofit organization dedicated to improving public health and safety by achieving understanding of sleep and sleep disorders, and by supporting education, sleep-related research, and advocacy.
Restless Legs Syndrome Foundation, Inc.
1530 Greenview Dr SW, Ste 210
Rochester, MN 55902
The RLS association publishes a newsletter.
The Endometriosis Associationis an independent, self-help organization of women with endometriosis, treating physicians, and others interested in the disease. It is a recognized authority in its field whose goal is to work toward finding a cure for the disease as well as providing education, support, and research. Informational brochures are available on several languages.
Website: www.endometriosisassn.org | Phone: (414) 355-2200
Headache Help – a website developed by Lawrence Robbins, M.D., a neurologist who runs a headache clinic in Illinois and who also suffers with chronic, daily headache pain. It is devoted to helping patients treat their headaches and to keep patients/physicians current on the latest remedies for migraine and tension-type headaches.
Pain and Rehabilitation Medicine: This clinic in Bethesda, MD, specializes in the diagnosis and treatment of people with a variety of painful conditions and other problems involving the musculoskeletal and neurological systems. The website offers several articles for download in addition to recommended books, self-management products, and a number of resourceful web links.
Bethesda Physiocare: This clinic in Bethesda, MD, specializes in physical therapy and treatment of pain and dysfunction. The “Resources for Patients” section includes links to physical therapy brochures, health articles, news, and helpful resources.
American Academy of Pain Management can help you find a pain therapist by state or profession, such as myofascial trigger point therapy.
iSTOP: The Institute for the Study of Soft Tissue and Other Pains is a non-profit organization dedicated to the understanding and treatment of soft tissue pain. This site will help you find practitioners by region.
Kinetacore Physical Therapy Education website offers recent news and information on the art of dry needling. The Colorado Chapter of the American Physical Therapy Association co-sponsors this site.
American Physical Therapy Association (APTA)is a national professional organization that fosters advancements in physical therapy practice, research, and education. Unfortunately, they do not list myofascial pain as a specialty, so once you find a practitioner in your area, you will have to call to find out if they have the skills to treat you (ask specifically about myofascial pain, trigger points and fibromyalgia).
Allsup, Inc. – Representatives that specialize in Social Security Disability Insurance (SSDI) benefits.
Website: www.allsup.com | Phone: (800) 279-4357
Erisa Law Group- Contact for help filing your first disability claim, appeal a denial of your long-term disability claim, appeal a termination of your long-term disability benefits, or file a lawsuit against your disability insurance company. California-based company accepting cases in all 50 states.
Website: www.theerisalawgroup.com | Phone: (888) 883-7472
The Podell and King Medical Practice. Dr. Podell is one of the nation’s leading experts on chronic fatigue, fibromyalgia, and nutritional, complementary alternative medicine. This site also contains information on practical “tests” to substantiate your fibromyalgia disability.
The United States Department of Justice Americans With Disabilities Act(ADA)
The following are websites that provide information on chronic pain treatments and prescription guidelines:
The American Pain Society (APS)
Partners Against Pain (provides public info on chronic pain treatment) www.partnersagainstpain.com
Pain and Policy Studies Group (a site hosted by University of Wisconsin) www.painpolicy.wisc.edu
Want to know who your representative is in the House, or who your two U.S. Senators are? You can find out how to reach them and what committees they serve on at the websites below. You may also look up the details of other powerful people in Congress as well.
Job Accommodations Network – This network outlines specific accommodations for employees with fibromyalgia.
Social Security Work Incentives- Several progressive programs make it possible for some people with disabilities receiving Social Security or Supplemental Security Income (SSI) to work and still receive monthly payments and Medicare or Medicaid.
The International Academy of Compounding Pharmacists. This organization provides a search tool for finding a compounding pharmacist nearest you.
The American Massage Therapy Association can assist you in finding a good massage therapist in your area. Visit their site below.
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