This page contains resources on two interrelated disorders, fibromyalgia syndrome (FMS) and vulvodynia. I first developed symptoms of both of these illnesses in the later half of 1994. I was finally diagnosed with FMS and chronic fatigue syndrome in July of 1996 and with vulvodynia in December of that same year. I was lucky, most people with fibromyalgia and/or vulvodynia suffer much longer before being appropriately diagnosed, and even longer before receiving effective treatment.
Fibromyalgia and Chronic Fatigue Syndrome Symptoms of fibromyalgia include flu-like body aches, muscle pain and stiffness, fatigue, sleep disturbances, irritable bowel syndrome (alternating diarrhea and constipation), and difficulty with concentration and memory, among others. Effective treatments can include low doses of antidepressants (for their pain-reducing effect), pain medications of sufficient strength, physical/massage therapy, and the slow introduction of a daily exercise program. Many people with FMS have also found some relief through nutritional supplements such as malic acid. Fibromyalgia is similar to chronic fatigue syndrome and some experts believe they are the same disorder. People with fibromyalgia often fit the criteria for both diseases. The causes of fibromyalgia and chronic fatigue syndrome are not known. Many women with fibromyalgia also have vulvodynia.
LINKS
Camilla Cracchiolo's Home Page -- information on AIDS, chronic fatigue syndrome and fibromyalgia syndrome, general medical topics, and herbal medicine.
The Chronic Fatigue Immune Dysfunction Syndrome/Fibromyalgia Information Page -- home page of the "fibromyalgia survey."
Chronic Illness Resource Site -- links and information on fibromyalgia, vulvodynia, and depression, including the author's personal experiences.
CO-CURE Home Page -- home page for the "Co-Cure" listserv. "Co-Cure" stands for "Co-operate and Communicate for a Cure." This list has been established with the goal of furthering co-operative efforts toward finding the cure for the illness commonly referred to as chronic fatigue syndrome.
Fibromyalgia info page -- lots of text files on fibromyalgia from a variety of sources.
Joy's Site for Fibromyalgia Survivors -- numerous links to other fibromyalgia (and related syndromes/help) sites.
Sheri's Fibromyalgia and Chronic Fatigue Resources Site -- information and links about fibromyalgia, chronic fatigue syndrome, myofascial pain syndrome, and other related medical conditions. [This site is currently down.]
WebMD -- an interactive health information service developed for people with chronic and serious illnesses.
The alt.med.fibromyalgia newsgroup is a source of information and support from other people with fibromyalgia, as well as from the doctors like Devin Starlanyl and experts like Miryam Williamson, who post frequently.
The web pages for the first two books also contain excellent information on fibromyalgia, written by the authors.
Fibromyalgia: A Comprehensive Approach by Miryam Williamson.
Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual by Devin J. Starlanyl M.D.
The Fibromyalgia Help Book: Practical Guide to Living Better with Fibromyalgia by Jenny Fransen, R.N. and I. John Russell, M.D., Ph.D.
Sick and Tired of Feeling Sick and Tired: Coping with Invisible Chronic Illness by Paul J. Donoghue, Ph.D. and Mary E. Siegel, Ph.D.
All of these books are available in the Bookstore on this site.
Vulvodynia Symptoms of vulvodynia include chronic pain, burning, itching, and/or rawness of the vulva (female genital tissue). This discomfort may involve the entire vulva or only specific areas. The pain may be constant, intermittent, or may be experienced only when the vulva is touched or with penetration (i.e. intercourse or tampon insertion). Vulvodynia is often associated with burning, frequency and urgency of urination when no infection is present. Many women with vulvodynia are misdiagnosed with vaginal infections, HPV (genital wart virus), or herpes. Treatment with most vaginal creams (especially creams containing hydrocortisone), acids such as TCA, laser surgery and most other surgeries can increase pain, sometimes permanently. Many women have been helped by the topical application of Estrace cream, nutritional supplements such as calcium citrate, the low oxalate diet, and biofeedback/physical therapy. The cause of vulvodynia is unknown. Many women with vulvodynia also have fibromyalgia.
Center of Vulvar Diseases -- a division of the University of Michigan Medical Center's Department of Obstetrics and Gynecology. Some of the best information on the web on this topic.
National Vulvodynia Association -- home page for this organization.
The Vulvar Pain Foundation -- home page for this organization. Includes detailed information on treatments such as Estrace cream and the low oxalate diet.
Vulvodynia.com -- Dr. Howard Glazer's site, home page of a vulvodynia listserv as well as live chats on vulvar pain issues. Also includes links, bibliography, and information on biofeedback treatment.
Vulvodynia Information Web Portal -- Julie works to obtain permission to publish articles on vulvodynia on the web. Her page is an invaluable resource.
Camilla Cracchiolo's Home Page is also the home of the Vulvar Pain FAQ, a "must-read" for anyone with vulvodynia.
Listservs are email discussion groups and are an invaluable resource to anyone with vulvodynia. They offer support and information from other women who understand and in doing so, they help combat the isolation most women with vulvodynia feel. Please consider joining at least one of the two below.
VulvodyniaList -- information on how to join.
The Vulvar Pain Forum -- for information on how to join this listserv, email Paige.
A Woman's Guide to Overcoming Sexual Fear & Pain by Aurelie Jones Goodwin, Ed.D. and Marc E. Agronin, M.D.
This book is available in the Bookstore on this site.
I strongly encourage anyone with vulvodynia to join the following two organizations. They both offer newsletters, excellent information, and support groups. Your membership dues will fund medical research and education on vulvodynia. If you are unable to pay the membership fees, please contact them. Both organizations will lower or waive membership dues for women experiencing extreme financial hardship.
The National Vulvodynia Association
P.O. Box 4491
Silver Springs, MD 20914-4491
Phone: (301) 299-0775
Fax: (301) 299-3999
The NVA asks for a $35 contribution for membership, international members add $5 for postage.The Vulvar Pain Foundation
Post Office Drawer 177
Graham, NC 27253
Phone: (910) 226-0704
Fax: (910) 226-8518
The minimum yearly fee for membership is $40. Members in Canada and Mexico add $5, other countries add $10.Back to Rowan's Resources home
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