SARCOID CONNECTION--Fibromyalgia Resources

Books

NOTE: I have selected the following books about fibromyalgia and chronic illness based on sales, recommendations by patients/doctors, and subject matter. The list includes books about fibromyalgia (both conventional and alternative treatments), books by patients/doctors who have a personal interest, books about coping with chronic illnesses, and books for spouses of those who are chronically ill. All are available at Amazon Books if you cannot find them in your local bookstore.

BESTSELLER: What Your Doctor May Not Tell You About Fibromyalgia : The Revolutionary Treatment That Can Reverse The Disease, R. Paul St. Amand, Claudia Craig Marek, December 1999.

"A radical but effective approach to treating fibromyalgia recommends a drug called Guaifenesin, offering advice on the cause of the disease and proper dosages of the drug."

BESTSELLER: Fibromyalgia & Chronic Myofascial Pain Syndrome : A Survival Manual, Devin J. Starlanyl, Mary Ellen Copeland (Contributor), June 1996.

"This manual offers the first comprehensive patient guide for managing these conditions. Includes a wealth of information on the conditions and finding support."

BESTSELLER, RECOMMENDED BY NFRA: The Fibromyalgia Help Book : Practical Guide to Living Better With Fibromyalgia, Jenny Fransen, I. Jon Russell, March 1997.

"Without a doubt, it is the most complete, factual and readable guide that has yet come on the market." Jenny A. Fransen is a rheumatology nurse clinician and director of the Arthritis Care Program and Fibromyalgia Treatment Program at Abbott Northwestern Hospital in Minneapolis, MN. Fransen has worked with thousands of patients with fibromyalgia.

RECOMMENDED BY MY OWN FIBROMYALGIA SPECIALIST: Making Sense of Fibromyalgia , Daniel J. Wallace, Janice Brock Wallace, January 1999.

"Noted medical writer Janice Wallace and Dr. Daniel Wallace provide a comprehensive guide--for both patients and professionals--to understanding this little known and poorly understood syndrome."

BY AN FMS SURVIVOR: Fibromyalgia : A Comprehensive Approach : What You Can Do About Chronic Pain and Fatigue, Miryam Ehrlich Williamson, et al, July 1996.

"Patient education guide to managing the pain associated with fibromyalgia, for the lay-level reader."

BY AN FMS SURVIVOR: The Fibromyalgia Survivor, Mark J. Pellegrino, David Schumick (Illustrator), December 1995.

"You get the specific step-by-step "how-to's," plus, you learn Fibronomics--the four key principles that help you minimize your pain in every situation."

Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome: Insights from Practitioners and Patients, Mari Skelly, et al, November 1999.

"Personal testimony from patients and their medical practitioners frames the resounding message of this book: there are a host of alternative therapies available to help people with chronic fatigue syndrome and fibromyalgia, a condition of chronic pain. An important resource for people with these conditions, this book also covers health insurance and disability benefit considerations."

Fibromyalgia and the MindBodySpirit Connection : 7 Steps for Living a Healthy Life with Widespread Muscular Pain and Fatigue, William B. Salt, et al, March 2000 .

"Written by two Columbus, Ohio doctors, Dr. William B. Salt II, board-certified in internal medicine and gastroenterology, and Dr. Edwin H. Season, board-certified in orthopedic surgery, the book explains how pain involves more than the body."

We Laughed, We Cried : Life With Fibromyalgia, Kit Gardiser(Editor), June 1995.

"A collection of works about living with fibromyalgia..... The authors and artists include both those who have the condition and those whose lives are closely affected by the illness. Among the latter, a man shares his journal of living with his wife's condition."

A Delicate Balance: Living Successfully with Chronic Illness, Susan Milstrey Wells, July 2000.

"The author follows 21 individuals, including herself, who suffer from chronic and largely invisible illnesses....." in writing a ".....a sensitive, hopeful exploration of maximizing one' quality of life while living with chronic illness."

BY 2 PSYCHOLOGISTS WHO SUFFER FROM CHRONIC ILLNESS: Sick and Tired of Feeling Sick and Tired : Living With Invisible Chronic Illness, Paul J. Donoghue, Mary Elizabeth Siegel, June 1994.

"An invaluable source of help and comfort to those who suffer from invisible chronic illness and to their caregivers and friends."

Living Well With a Hidden Disability : Transcending Doubt and Shame and Reclaiming Your Life by Stacy Taylor, Robert Epstein (Contributor), May 1999.

"Written for people with disabling conditions and the medical professionals who care for them, these strategies for growth, health, and happiness reassure readers that they aren't alone and provide tips for dealing with pain and confusing emotions."

THIS BOOK HAS MY PERSONAL RECOMMENDATION FOR BOTH PATIENT AND SPOUSE TO READ: Beyond Chaos : One Man's Journey Alongside His Chronically Ill Wife, Gregg Piburn, May 1999.

"This daring and thought-provoking chronicle encourages readers, both the healthy and the unhealthy, to become open, honest, and courageous in dealing with the sensitive issues surrounding a life invaded by chronic illness."

Surviving Your Spouse's Chronic Illness, Chris McGonigle, February 1999.

"A woman married for 15 years draws on her personal experience and that of the many other men and women whom she has interviewed to speak frankly about what it is really like to care for a chronically ill spouse."

Organizations

NOTE: I have listed a number of fibromyalgia organizations, a couple that are closely related, and a few dealing with chronic pain and headaches. After each listing I have included some of the features of the organization as I know them.

National Fibromyalgia Research Association (NFRA), P.O. Box 500, Salem OR 97302 -- The NFRA is an non-profit FMS activist organization involved in research, public awareness, physician education, patient education, political lobbying.

Features: Web site, awareness pin, FMS information, diagnostic criteria.

Fibromyalgia Network, P.O. Box 31750, Tucson AZ 85751, phone: (800) 853-2929 or (520) 290-5508 -- The Fibromyalgia Network provides educational materials on fibromyalgia and chronic fatigue syndrome.

Features: Web site, information, seminar info, newsletter.

The American Fibromyalgia Syndrome Association (AFSA), 6380 East Tanque Verde - Suite D, Tucson AZ 85715, phone: (520) 733-1570 -- The AFSA is a non-profit organization dedicated to research, education, and patient advocacy for those with fibromyalgia and chronic fatigue syndrome. The emphasis is on research.

Features: Web site, membership, seminar info, educational materials.

Fibromyalgia Alliance of America, P.O. Box 21990, Columbus OH 43221-0990, phone: (888) 717-6711 or (614) 457-4222, fax: (614) 457-2729 -- FMAA is a non-profit organization that is an alliance of individuals representing themselves and/or others living with fibromyalgia.

Features: Web site, information, membership, newsletter.

National Fibromyalgia Association, Lynne Matallana - Director, 2200 Glassell Street, Suite "A", Orange, CA 92865, Phone: (714) 921-0150, Fax: (714) 921-6920, Email: NFA@fmaware.org. -- The National Fibromyalgia Association (previously known as the National Fibromyalgia Awareness Campaign) is a [501(c) 3] non-profit organization whose mission is to develop & execute programs dedicated to improving the quality of life for people with FM by increasing the awareness of the public, media, government & medical community.

Features: Web site, information, disability information, newsletter, membership, Awareness Day info and t-shirts.

USA Fibromyalgia Association, Box 1483, Dublin OH 43017, phone: (614) 851-9177 or (614) 675-1152.

The Oregon Fibromyalgia Foundation , 1221 SW Yamhill - Suite 303, Portland OR 97205-2110.

Features: Web site, information, disability info.

Fibromyalgia Association of Florida, Inc., P.O. Box 14848, Gainesville FL 32604, phone: (904) 373-6865.

Features: newsletter.

Inland Northwest Fibromyalgia/Chronic Fatigue Association, 933 West 3rd Avenue - Suite 211, Spokane WA 99201, phone (509) 838-3001.

Features: newsletter.

British Columbia Fibromyalgia Society , P.O. Box 42504,105 1005 Columbia Street, New Westminster BC Canada V3M 6H5, phone: (604) 540-0488, fax: (604) 520-0481 -- The British Columbia Fibromyalgia Society is a non-profit organization dedicated to the belief that people with fibromyalgia are entitled to support, care, and effective treatment, and that both support services and research are of vital importance.

Features: Web site, information, newsletter, membership, FMS education meetings.

Ontario Fibromyalgia Association, 393 University Avenue - Suite 1700, Toronto ON M5G 1E6, phone: (416) 979-7228, fax: (416) 979-8366.

Features: newsletter.

Arthritis Foundation, 1330 West Peachtree Street, Atlanta GA 30309, phone: (800) 283-7800 or (404) 872-7100 -- The Arthritis Foundation is the only national not-for-profit organization that supports the more than 100 types of arthritis and related conditions with advocacy, programs, services and research.

Features: Web site, information, message board.

Massachusetts CFIDS Association, P.O. Box 690305, Quincy MA 02269-0305, phone: (617) 471-5559 -- This organization is dedicated to supporting research, promoting medical and public education in, and advocacy and support services for persons with chronic fatigue syndrome (CFIDS), fibromyalgia (FMS), and myalgic encephalomyelitis (ME).

Features: Web site, support groups, membership, newsletter (main focus of info is CFIDS).

The Chronic Syndrome Support Association, 801 Riverside Drive, Lumberton NC 28358-4625, e-mail: nsolo@cssa-inc.org, fax: 910-272-0904 -- The Chronic Syndrome Support Association, Inc. is a non-profit corporation founded in order to educate the general population and health-care professionals who lack current knowledge of the research being done, and potential research that needs to be done, on these serious, yet invisible, chronic immunological and neurological diseases (CIND), which include Fibromyalgia Syndrome (FMS), Gulf War Syndrome (GWS), Multiple Chemical Sensitivity Syndrome (MCS), Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS), and Myofascial Pain Syndrome (MPS).

Features: Web site, information, newsletter, downloadable pamphlet, support group info.

National Chronic Pain Outreach Association (NCPOA), 7979 Old Georgetown Road - Suite 100, Bethesda, MD 20814-2429, phone: (301) 652-4948, fax: (301) 907-0745 -- NCPOA serves as a clearinghouse of information on any kind of chronic pain.

Features: information, newsletter, membership, support group info.

The American Chronic Pain Association (ACPA), P.O. Box 850, Rocklin, CA 95677, phone: (916) 632-0922, fax: (916) 632-3208 -- The American Chronic Pain Association, Inc. is a nonprofit organization that supports self-help groups which teach positive ways to deal with chronic pain.

Features: Web site, educational materials, newsletter, membership.

The National Headache Foundation, 428 West St. James Place - 2nd Floor, Chicago, Illinois 60614-2750, phone: 888-NHF-5552, fax: (773) 525-7357 -- The National Headache Foundation is an information center for those seeking information and support about headaches.

Features: Web site, newsletter, membership, support group info.

M.A.G.N.U.M., Inc. (Migraine Awareness Group: A National Understanding for Migraineurs), 113 South Saint Asaph - Suite 300, Alexandria VA 22314, phone: (703) 739-9384, fax: (703) 739-2432. MAGNUM is a non-profit corporation that was created to bring public awareness, utilizing the electronic, print and artistic mediums, to the fact that Migraine is a true organic neurological disease.

Features: Web site, information, no conventional membership, donations accepted.

Links to Web Sites, Articles, etc.

NOTE: I am listing here a number of fibromyalgia related Websites that contain a wealth of information. I am also listing several links to articles that may of interest to those who are living with fibromyalgia.

IMPORTANT INFORMATION: The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia

SAD BUT TRUE: The Road to Southfield-- Jan's Story

IMPORTANT SOCIAL SECURITY DISABILITY INFORMATION: Social Security Disability Secrets, Web site containing substantial info in Q&A format with section containing specific info for those with fibromyalgia, Social Security Disability (SSD), SSI and Fibromyalgia

Moira A. Smith's Canberra, Australia FM/CFS Page, Web site.

FibroHugs, Web site. Extensive site that provides substantial information and support to those challenged by fibromyalgia. Become a registered user and join in a chat or post to a message forum.

FibroWorld , Web site.

Living With FM & MPS, Web site.

American Academy of Medical Acupuncture , Web site containing information about medical acupuncture and doctors who perform the procedure.

HealingPeople.com, Web site about complementary and alternative medicine.

About.com: Chronic Fatigue Syndrome/Fibromyalgia, Web site containing many pages of information, links, chat/message forums.

Suite101.com: Coping With Fibromyalgia, Web site.

Fibromyalgia & Chronic Myofascial Pain Syndrome, Devin J. Starlanyl's Web site.

Health Science Center, University of Florida, press release about recent fibromyalgia research findings.

What Is Fibromyalgia, an article by Deborah A. Barrett.

Fibromyalgia: Improving Through Fitness , an article by Deborah A. Barrett.

Controlling Pain In Fibromyalgia Syndrome, an article by Camilla Cracchiolo, RN

Coping with Fibromyalgia and Chronic Fatigue, from Chapter Ten of Miryam Ehrlich Williamson's book, Fibromyalgia: What you can do about Chronic Pain and Fatigue.

Q&A About Fibromyalgia, an article from the National Institute of Arthritis and Musculoskeletal and Skin Diseases Web site.


Fibromyalgia Resources Information and Support from the Hunter Valley, NSW, Australia to Midcoast ME U.S.A. . . . and Beyond