INDEX


NONPROFIT ORGANIZATIONS

ONLINE ORGANIZATIONS, RESOURCES, & SUPPORT

PERSONAL SITES

PHYSICIANS & RESEARCHERS

GOVERNMENT LINKS & RESOURCES

SOCIAL SECURITY
BENEFITS


YOUTH

MEDICAL

FOREIGN LANGUAGE AND INTERNATIONAL RESOURCES

BIBLIOGRAPHY

FIBROMYALGIA GUIDE


Fibromyalgia is a widespread chronic pain condition of the musculoskeletal system with a syndrome of other symptoms such as fatigue, cognitive impairment, and sleep disturbance. It is sometimes abbreviated as “fibro,” “FM,” or “FMS” (for fibromyalgia syndrome). The cause is still unknown. The term fibromyalgia means pain in the fibrous tissues in the body: the muscles, ligament and tendons.

Very often fibromyalgia is linked with chronic fatigue syndrome (CFS) since there is a great deal of overlap in symptoms and diagnoses.



NONPROFIT ORGANIZATIONS

The Chronic Syndrome Support Association
This site includes information on FMS, multiple chemical sensitivity (MCS), CFS, myofascial pain syndrome (MPS), and other related conditions. Lists issue titles and authors of quality quarterly newsletter. Also features pamphlets, news and events, patient resources, “Bedroom Talk,” books and videos, letters, articles of Interest, and links.
http://www.cssa-inc.org/

The Fibromyalgia Network
Provides educational materials on fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS). Offers quarterly newsletter. Provides specialty packets, coping tips, advocacy information, and archived information on a range of topics, including international awareness day, back supports, disability, information for family and friends, how to handle doctor’s visits and other people in your life, jaw pain, headaches, and a great deal of information on treatments, drug and non-drug.
http://www.fmnetnews.com/

Massachusetts CFIDS & FM Association
The Mass. CFIDS (chronic fatigue immune dysfunction syndrome) & FM Association is dedicated to supporting research, promoting medical and public education, and advocacy and support services for persons with CFIDS or FMS. Serves Mass., Vermont, New Hampshire, and Maine. The Association provides disability information, advocacy, support group and doctor referral, a lending library of books and tapes, as well as relevant, news, lectures, and research funding.
http://www.masscfids.org

The National Fibromyalgia Partnership (NFP)
NFP’s mission is to "provide medically accurate, up-to-date information on the symptoms, diagnosis, treatment, and new research on fibromyalgia." Site provides information on fibromyalgia in English, Spanish, and French, as well as articles, research information, books and videos, a help guide, and an online store. Articles include medical and therapeutic topics, a resource guide for health professionals, and advice on how to win disability cases.
http://www.fmpartnership.org/

Seacoast Area Fibromyalgia/CFIDS/Chronic Pain Support Groups
Support groups, telephone support, and lending library for people in New Hampshire and Maine. Meetings and/or resource people are in New Durham, Peterborough, and Rochester, NH and in Saco and North Berwick, Maine.
http://www.seacoastfms.org/

Well Spouse Foundation
The Well Spouse Foundation (WSF) has support groups for healthy husbands, wives, and partners of people with a chronic illness and/or disability.
http://www.wellspouse.org


ONLINE ORGANIZATIONS, RESOURCES, & SUPPORT

AOL Fibromyalgia Chats, Message Boards, and Home Pages
America Online has scheduled fibromyalgia support chats six days a week. To view the days, times, and locations, or to contact the hosts, go to "People Connection," "Find a Chat," and click on "Chat Schedule." Choose "Health Chat Schedule" and then scroll down to "Fibromyalgia Support."

The CFIDS/M.E. Information Page
A comprehensive listing of resources, including general information about CFIDS and FMS, diagnosing and treating CFIDS and FMS, medical research and references, RnaseL Enzyme Dysfunction Disease (R.E.D.D.), activist Information, organizations & discussion lists on the Internet, state and local support groups, disability information, commercial laboratories & other commercial sites of interest, links to information about related diseases and general medical information, and a glossary of acronyms.
http://www.cfids-me.org/

CFIDS Association of America
Our mission is to conquer CFIDS. Learn about the programs and people dedicated to this important effort. Resources, research and free continuing education opportunities. View the Provider Education Project jointly sponsored by the CDC and the CFIDS Association.
http://www.cfids.org/

CF Pen Pal Alliance
Provides online support group Web site on CFS/FMS as well as a free, international pen pal program for CFS/FMS/ME sufferers of all ages as well as their families and care givers -- available by e-mail or postal mail. Boasts over 1000 members worldwide!
http://groups.yahoo.com/group/CFPenPal/

CFS Guide at About.com
Extensive reader-friendly information on CFIDS, fibromyalgia, advocacy, complementary medicine, coping strategies, health news, medications, personal stories, related disorders, communication and relationships, research, treatments, support, and Social Security. Also provides information in Spanish (en Español). Chat held nightly.
http://chronicfatigue.about.com/

Co-Cure Information Exchange
"Co-Cure" stands for "Cooperate and Communicate for a Cure." There is a Co-Cure listserv, Web ring, Web site, archives, and lots of links and information relating to CFS, FMS, and related illnesses. Provides basic information on FMS, including información básica en español, a list of doctors, research updates, activism links, a "reading room" of reading materials on FM and auto-immune conditions, containing links to online documents, book reviews, editorials, and abstracts.
http://www.co-cure.org/

CO-CURE Web Ring
The most extensive CFS Web ring, containing over 90 active sites. "The Co-Cure e-mail list was developed around the principle goal of furthering cooperative efforts towards finding the cure for the illness(es) commonly referred to as Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM). One of the primary ways in which this goal may be achieved is through effective exchange of information. To this end, we have created the Co-Cure Web ring.” Also addresses Gulf War Syndrome and MCS. Covers all conceivable CFS and related issues, locally and internationally.
http://X.webring.com/hub?ring=cocureweb

The Fibrom-L Community
Links, basic information, and resources such as how to access free/low cost medication or find a doctor. Also includes a moderated fibromyalgia discussion group/listserv.
http://www.fmscommunity.org/

Fibromyalgia & Chronic Fatigue Syndrome-M.E. WebRing
"This web ring is for people suffering from the debilitating ailments, Fibromyalgia & Chronic Fatigue Syndrome or Myalgic Encephalomyelitis(M.E.). Webmasters who have FMS or CFS (M.E.) sites are welcomed to join."
http://W.webring.com/hub?ring=fibromyalgiawebr

Fibromyalgia Personal Support Center
Up-to-date news, archives, excellent links, support groups, chat rooms, an events page, a bulletin board of helpful items for sale or barter, contests, links to personal homepages, even "fibro-friendly" recipes. Site is maintained by people with fibro.
http://www.fmpsc.org/wall/wallinks.htm

FMS-CFS-Chronic Pain Support @www.ezboard.com
"Friends International Support Group and message board" for information and support for people with Fibromyalgia, Chronic Fatigue Syndrome, ME or chronic pain. Includes many chat groups, including "Small talk," "Coping and Health Problems," "Information Links," "Graphics/Photo/computer talk," Annie's Pet Corner," "American Social Security/Disability," plus archives and graphics/PC tutorials.
  http://sunshine35446.yuku.com/bsunshine35446

Our FM/CFS World Inc.
Our FM/CFS World Inc. is a nonprofit organization maintained by sufferers of Fibromyalgia and Chronic Fatigue Immune Deficiency Syndrome. Our Mission is to improve the quality of life for fellow sufferers, while increasing public, governmental and medical awareness of these diseases.
http://www.ourfm-cfidsworld.org/index.html

Chronic Fatigue Syndrome and Fibromyalgia Information Exchange Forum
The name "Co-Cure"" stands for "Cooperate and Communicate for a Cure." Our Focus: CFS & Fibromyalgia
http://www.co-cure.org/index.htm


PERSONAL SITES

Carol Johnson and Iowa FMS Support Group
A personal homepage and headquarters of a support group in Iowa. Includes a good list of support groups in each state as well as tips on how to start a support group. Bonus is a pain scale that is useful for communicating to doctors the specifics of pain. Also includes original writings by people with fibromyalgia, causes, diagnosis, treatment, further research, exercises, and links.
http://www.angelfire.com/ia/cjmachine/fibro.html

CFS Days
Fibromyalgia and CFS site with excellent set of medical articles, links, products and treatments for sale, and CFS DAYS cartoons for "the healing tonic of a good laugh."
http://www.geocities.com/cfsdays/

Fibro Hugs
"The Mission of Fibrohugs is to offer a place where persons with Fibromyalgia can find understanding, knowledge, and support in their daily battle with this painful disease." Offers a full range of support groups (including for teens and loved ones). Along with stories and poems, this site offers medical information on FMS and related/similar conditions such as myofascial pain, lupus, multiple sclerosis, temporomandibular joint disorder, migraine headaches, Raynaud's numbness and tingling, restless leg syndrome, allergies and/or environmental sensitivities.
http://www.fibrohugs.org/

Joy’s World’s Resource Site for Fibromyalgia Survivors
Self-described as "resources, support and links to other fibro sites. The purpose of this site is to bring information to FMS people. I promote a positive attitude and humor in dealing with FMS." Includes "Cheap Tricks -- Top 5 Things To Do for newly diagnosed FMSers," "The Fibromyalgia Bookshelf," "The Men's Zone," and a guestbook where you can reply to the entries.
http://www.plaidrabbit.com/fms/index.html

Navigating the Body: A Visibility Project
This site is an art installation of work by three women with fibromyalgia. Web designer Susan Harman says, "My objective for Navigating the Body is to try to give voice to the unspoken and express the invisible through art." Powerful and beautiful.
http://www.queer-arts.org/y2gay/Navigate/index.html

Rowan's Resources: Fibromyalgia and Vulvodynia Resources
This page contains resources on two interrelated disorders, fibromyalgia syndrome (FMS) and vulvodynia, a chronic vulvar pain syndrome. Alternative medicine focus.
http://www.branwen.com/rowan/

FibroTalk.info
http://www.fibrotalk.info/


PHYSICIANS & RESEARCHERS

Fibromyalgia and Chronic Myofascial Pain Syndrome
Site of Devin Starlanyl, M.D., selling her books and tapes on fibromyalgia and chronic myofascial pain syndrome. Also includes information on what other health-care providers, such as dentists, should know about patients with FMS. Many other fibromyalgia sites link to this one. Information in Spanish and Dutch. Site includes a "diagnostic," referenced data sheets to give to your doctor(s), a physicians' bibliography, preliminary findings of her study, and a list of current and ongoing studies in need of patient participation.
http://www.sover.net/%7Edevstar/

National Fibromyalgia Research Association
P. O. Box 500
Salem, OR 97302
http://www.nfra.net/

Fibromyalgia and Chronic Pain Research Program
The Web site for the joint Kettering University/McLaren Regional Medical Center Fibromyalgia (FMS) research program, led by Dr. Jeff Hargrove, Dr. Susan Smith and Dr. Sunil Nagpal. Provides updates on research, ordering info for "Videotape of the Kettering University FMS/Chronic Pain Forum," encourages information sharing, provides info on FMS support groups; finding a physician in your area; suggested reading & selected research papers and articles; and the article, "I need to help my physician understand more about my condition."
http://www.fm-research.com

From Fatigued to Fantastic
Site of Dr. Jacob Teitelbaum, a physician who specializes in holistic medicine for people with fibromyalgia and chronic fatigue syndrome and author of the book by the same name. Much is promoting books and articles for sale, but also contains articles and references to medical journals and abstracts.
https://www.endfatigue.com

CFS Research Foundation
CFS Research Foundation is a nonprofit website providing Free medical articles on Chronic Fatigue Syndrome.
http://www.cfsrf.com/

Immunesupport.com
For-profit site selling Pro Health products. Includes information on treatment protocols by many FMS/CFIDS doctors, as well as many medical/scientific articles, a chat room with professional guests (and a transcript archive), and other supportive material. Sections include Fibromyalgia & Chronic Fatigue Syndrome News and Information; Fibromyalgia & Chronic Fatigue Syndrome Research Abstracts; Fibromyalgia: Overview, Treatment & Online Chat; CFS & FM Support: Disability, Doctor Referral, Message Boards, Support Groups, Drug News, & Related Sites
http://www.immunesupport.com/

The Oregon Fibromyalgia Foundation (OFF)
This site contains a collection of scientific literature on fibromyalgia, including much by Robert Bennett, an Oregon Health Sciences University doctor and prominent FMS researcher. Also has a section on Social Security Administration regulations regarding FMS and CFS.
http://www.myalgia.com/


GOVERNMENT LINKS & RESOURCES

Healthfinder
U.S. Department of Health and Human Services site is informs about the priorities and goals of fibromyalgia research. Contains articles such as “Fibromyalgia Research: Challenges and Opportunities” and “Questions and Answers About Fibromyalgia.”The home site, www.healthfinder.gov, has general health information.
http://www.healthfinder.gov/search/default.asp?client=healthfinder2
&site=Federal%7Cnonprofit&output=xml&lr=lang_en&ie=UTF-
8&oe=UTF-8&q=Fibromyalgia&submit2=Search

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
NIAMS is a branch of the National Institutes of Health (NIH). This site provides links to numerous studies and government articles on FMS, many of which are simply conference or meeting reports, but some of which include studies on medications, sleep, neuroscience, and endocrinology.
http://www.niams.nih.gov/


SOCIAL SECURITY BENEFITS

Social Security Online
The Web site for the Social Security Administration provides information and forms on benefits, including social security disability income (SSDI) and supplemental security income (SSI). Información en Español and other languages. Covers Medicare, Medicaid, employment support for people with disabilities, hearings and appeals, and changes to the program.
http://www.ssa.gov/

Helping Fibromyalgia Patients Obtain Social Security Benefits
Excellent article by, Joshua W. Potter, Esq., an attorney familiar with FMS. Article covers topics of "What Is Disability?" "The Process Begins," "Appeals," "Requesting a Hearing," "The Role of the Physician," "Medical Records," "Past Work," "Narrative Report," "In-Person Testimony," and "Disability Economics." Includes a very useful table of the steps in the process of applying for SSI/SSDI, with time line and comments.
http://www2.rpa.net/~lrandall/ssdi_fms.html


YOUTH

For Parents of Sick and Worn-Out Children
Frank Albrecht's site: "When your child persistently suffers from pain, fatigue, heat and exercise intolerance, dizziness, nausea, 'cognitive fog,' and other symptoms of Chronic Fatigue and related syndromes, you as a parent have special kinds of problems. This page is devoted to pointing toward help on these problems." Provides information on family life and emotional development, detecting symptoms, common misdiagnoses, advocacy guidelines and related conditions such as Chiari I Malformation and cervical stenosis, orthostatic syncope, neurally mediated hypotension (NMH), postural tachycardia syndrome (POTS), and dysautonomia.
http://home.bluecrab.org/%7Ehealth/sickids.html

Teen & Young Adult Guide to FMS: Fibromyalgia Links
Extensive fibromyalgia links. Includes links for research projects; information and search engines to gather specific information on the syndrome; FMS related articles; support pages for chats, pen pals, and message boards; youth disability sites.
http://www.angelfire.com/on/teenfms/fmslinks.html


MEDICAL

Surgery, Anesthesia and CFS/FM/MCS
Site compiled by Melissa Kaplan contains information on surgery and anesthesia for people with FMS, CFS, etc. Covers acupuncture, anesthesia, IV Bags latex and vinyl allergies/sensitivities, surgery, and topical anesthetics. Melissa's site also provides articles for PWCs on activism, books, chemical sensitivities, coping, diagnosis & differential diagnoses, disability, drugs, gender, hormones, pain, pets, and resources including, "Finding Help: Disability Attorneys, Doctors, and Support Groups."
http://www.anapsid.org/cnd/drugs/anesthesia.html

RevolutionHealth.com
Examines treatments, therapies, and medications for numerous health conditions, including FMS. An extensive list of treatments is found under each condition. Site visitors are also encouraged to rate the effectiveness of treatments (using a number scale) that they’ve tried or prescribed. Top ten remedies for FMS include list-making, hydrotherapy, rest, guaifenesin, OxyContin, therapeutic massage, Flexeril, and Neurontin. Also has FMS links.
  http://www.revolutionhealth.com/


FOREIGN LANGUAGE AND INTERNATIONAL RESOURCES

Association de fibromyalgie de l'Estrie (Quebec/Canada)
In French and English, this Web site offers articles, advice, links, and support-group contact information from a Quebec fibromyalgia association.
http://www.fibromyalgie.ca/

National ME/FM Action Network (Canada)
A Canadian non-profit organization offering support, advocacy, education and research into the many, varied, anomalies connected with these illnesses. Works with the general public, educators, government agencies, and the ME/FM Community. Site includes a bulletin board, news releases, archives, a youth site for parents and teachers to access materials, Gulf War Syndrome information, alternative medicine information, membership, sales of books and videos, a doctors and lawyers roster to receive up to date medical and legal information, a guide on applying for disability pensions, and the bimonthly newsletter 'QUEST.'
http://www.mefmaction.net

Fibromyalgia Information and Local Support (Canada)
Info, articles, links, mailing list, a support group and a list of speakers. Basic information also in French (en Francais). Useful chart of FMS tender points and a very comprehensible explanation of diagnostic criteria for FMS.
http://fibromyalgia.ncf.ca/

Also see these sites listed elsewhere for information on fibromyalgia in languages other than English:

In Spanish (en Español):
http://chronicfatigue.about.com/

http://www.fmpartnership.org/

http://www.sover.net/%7Edevstar/

In Dutch:
http://www.sover.net/%7Edevstar/

In French (en Francais):
http://www.fmpartnership.org/


BIBLIOGRAPHY

• Gayle Backstrom, Bernard R. Rubin, When Muscle Pain Won't Go Away: The Relief Handbook for Fibromyalgia and Chronic Muscle Pain.

• Stacie L. Bigelow, Fibromyalgia: Simple Relief through Movement.

• David S. Bell, MD, et al, A Parent's Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction.

• Katrina Berne, et al, Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses

• Chet Cunningham, The Fibromyalgia Relief Handbook.

• Kat Duff, The Alchemy of Illness

• Jenny Fransen, RN and I. John Russell, MD, PhD, The Fibromyalgia Help Book: Practical Guide to Living Better with Fibromyalgia.

• Milton Hammerly, MD, Fibromyalgia: The New Integrative Approach: How to Combine the Best of Traditional and Alternative Therapies (Integrative Health Series).

• Pamela D. Jacobs, 500 Tips for Coping with Chronic Illness.

• Toni Jeffreys, The Mile High Staircase.

• Kathleen Lewis, Successful Living with a Chronic Illness.

• Terry Mosley, Life in the Slow Lane.

• Mark Pellegrino, MD, Inside Fibromyalgia.

• Gregg Piburn, Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife.

• Zefra Pitzele, We Are Not Alone, Learning to Live with a Chronic Illness

• Jacki Schrimer, When I Am Weak.

• Mary J. Shomon, Living Well with Autoimmune Disease: What Your Doctor Doesn't Tell You...That You Need to Know.

• Mary Siegel, Ph.D. & Paul J. Donoghue, PhD, Sick & Tired of Feeling Sick & Tired: Living with Invisible Chronic Illness..

• Devin J. Starlanyl, MD, Mary Ellen Copeland, Fibromyalgia and Chronic Myofascial Pain: A Survival Manual 2nd Edition.

• Devin J. Starlanyl, MD, The Fibromyalgia Advocate: Getting the Support You Need to Cope with Fibromyalgia and Myofascial Pain Syndrome.

• Jacob Teitelbaum, MD, From Fatigued to Fantastic!: A Proven Program to Regain Vibrant Health, Based on a New Scientific Study Showing Effective Treatment for Chronic Fatigue and Fibromyalgia..

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

• Miryam Williamson, Fibromyalgia: A Comprehensive Approach.




This guide created by Sharon Wachsler SickHumor2@aol.com



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