Fibromyalgia Resources


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Fibromyalgia Resources

compiled and contributed by Betsy Jacobson - Fibrobetsy@aol.com

BOOKS

FIBROMYALGIA: A COMPREHENSIVE APPROACH by Miryam Ehrlich Williamson, Publ by Walker. Best way to order is via http://www.amazon.com. Less than $14.95. Also (800) 289 2553. Bulk rates available. This is an exceptionally good FMS book, and what is additionally wonderful about it is that it's written for beginners unfamiliar w/medical jargon and/or FMS, and for more experienced people. Something for everyone. Get out your hi-liter whether you're beginner or advanced. You'll use it a lot.

CHRONIC ILLNESS AND UNCERTAINTY; A Personal & Professional Guide to Poorly Understood Syndromes by Don L. Goldenberg, MD, Publ. by Dorset Press, PO Box 620026, Newton Lower Falls, MA 02162; (617) 243 5005 $16.50 plus $3.50 S & H for 1st bk & $1 each add'l copy. MA residents add .83 per book. In addition to being a world famous FMS doctor, Don Goldenberg , MD, a major headache sufferer, has "been there" himself. What a shock! An MD who really KNOWS how we feel. Moreover, wife, Patty, has FMS. Dr. G writes a very down to earth, lucid 174 pager (with terrific annotations on each book in his bibliography) about FMS, CFS, migraine, depression & related illnesses from both sides of the fence.

THE FIBROMYALGIA SUPPORTER by Mark J. Pellegrino, MD, Anadem Publishing (800) 633 0055 $15.50. Please give this book to your significant other and any other significant person in your life immediately if not sooner. $15.50 is a small price to pay for something that may save your life. Can you imagine having FMS and receiving empathy and help from your nearest and dearest? Try it, you'll love it.

TAKING CHARGE OF FIBROMYALGIA: A Self Management Program for FMS; Patient handbook. 500 Bushaway Rd, Wayzata, MN 55391-1912 (612) 473 6218 & (419) 843 3153. $25 w/shipping. Bulk (over 10) prices available. In its 3rd printing, this complete patient handbook is also packaged with a teaching manual & slide program for teachers ($440 incl. shipping). Written by professionals who have FM, it offers a complete approach to dealing with FM, and when the explanations are scientific they're understandable to non-professional patients.

FROM FATIGUED TO FANTASTIC, a Manual for Moving beyond Chronic Fatigue & FMS, by Jacob Teitelbaum, MD; Deva Press, 139 Old Solomons Island Rd., Annapolis, MD 21401 $18.95 softcover. A complete program of complementary medicine (aka a combo of traditional and non-traditional medicine). A lot of people swear by this book, and you will too. It's protocols worked successfully on the author, a former fellow sufferer.

8 WEEKS TO OPTIMUM HEALTH; A Proven Program for Taking Full Advantage of Your Body's Natural Healing Power by Andrew Weil, MD. $23 at bookstores. Since I refer hundreds of people to doctors all over the world, I finally refered myself to a good one, & his 1st Rx was to read this book. Instead of "take 2 aspirins & call me in the morning" or IAIYH, he said "read this book & make an appt for 8 weeks from now." I'm reading it & loving it. It even has delicious, nutritious and easy recipes.

FIBROMYALGIA, A HANDBOOK FOR SELF CARE & TREATMENT, by Janet A. Hulme, MA, PT, Phoenix Publishing Co., PO Box 8231, Missoula, Montana 59807 $14.95 + $3 S & H. A nifty 98 pager written by a PT whose college aged daughters have FMS. Hulme describes clearly, not only the bio-physical things wrong with us, but also the important treatment modalities that relieve their symtoms.

THE FIBROMYALGIA SURVIVOR; by Mark Pellegrino, MD, Anadem Publ., (800) 633 0055. $23 incl.S & H. Mark Pellegrino is a gem. He explains things wonderfully. No surprise. He not only has FMS, but he is also a majorly empathic & dear person.

EXAMINING YOUR DOCTOR; a Patient's Guide to Avoiding Harmful Medical Care; Timothy B. McCall, MD, Citadel Press; $16.95. In book stores. Anyone who thinks I'm negative about doctors will consider me a pollyanna after reading this book. It's a terribly important one. The cheapest insurance policy you can buy. It's a fast read, & you'll need that highlighter again.

THE FIBROMYALGIA HELP BOOK; Practical Guide to Living Better With Fibromyalgia, by Janet Fransen,RN & I. Jon Russell, MD, PhD. (888) 220 5402 toll free. $22.95 w/s & h. Bulk rates available. Practical Guide --- VERY practical. Even the technical is practical and quite manageable. An important book for the neophyte AND the more experienced.

LOST VOICES: Women, Chronic Pain & Abuse by Nellie A. Radomsky, MD,PhD, Harrington Park Press, an Imprint of The Haworth Press, Binghamton, NY (800) 429 6784 $12.95 soft. A thoughtful look at the cultural "etiology" of the abusive relationship between patient and doctor & female patient & male oriented society based on the author's own observations in her practise, discussions with a colleague & an alteration of her own attitudes. Understanding these attitudes will help patients begin to assert themselves.

FM SYNDROME & CHRONIC FATIGUE SYNDROME IN YOUNG PEOPLE Edited by Kristin Thorson, head of the Fibromyalgia Network. Same address as FMS Network Newsletter. $10. If your child has growing pains or other FMS- like symptoms, please read this. She/he could have FMS and would be very fortunate to know it early.

FEELING GOOD, The New Mood Therapy, and/or The FEELING GOOD HANDBOOK, by David Burns MD, disciple of Aaron Beck, MD, guru of Cognitive Behavior Therapy which is highly recommended by Fibromyalgia practitioners and researchers. An extremely successful therapy that works wonders in coping with FMS. Burns' books constitute very inexpensive psychotherapy. Just the price of the softcover book(s). In bookstores.

SICK AND TIRED OF FEELING SICK AND TIRED: Living with Invisible Chronic Illness by Paul J. Donoghue, PhD & Mary Siegel, PhD. Publ byWW Norton & Co., Dept JWB, 500 5th Ave., NYC 10110; (800) 233 4830 OR In bookstores. Paperback - $11.95. Anyone with Fibromyalgia & other chronic syndromes will think that this book is written about her/him. Very insightful and full of wisdom, it's bound to make you feel normal again.

WE LAUGHED WE CRIED; Life with Fibromyalgia.Compiled & edited by Kit Gardiser & Kathleen Kerry, KMK Associates, PO Box 60246, Palo Alto, CA 94306 $13.50 w/postage; in its 2nd printing. A marvelous anthology of stories, some expressed in poetry, this book is like group therapy. It's hopeful, helpful and delicious.

LOW-FAT LIVING for REAL PEOPLE - Linda Levy & Francine Grabowski, MS, RD $12.95 +$3 shipping Distributed by: Upper Access, Inc., One Upper Access Rd., PO Box 457, Hinesburg, VT 05461 Very readable, light-hearted but seriously important soft-covered book on how to eat the right things deliciously even in restaurants. 50 pages of embarrassingly easy recipes as well.

FOOD - YOUR MIRACLE MEDICINE, by Jean Carper, Harper Perennial Publisher; $13. This popular book will tell you which foods to eat to achieve specific health goals.

FIBROMYALGIA & CHRONIC MYOFASCIAL PAIN SYNDROME, Devin Starlanyl & Mary Ellen Copeland, New Harbinger Publ's., Inc., $19.95 at Amazon.com. This is a very large and ambitious book with lots of suggestions & explanations. The line between MPS and FMS & the author's resources are never clear here.

[Anything] BY DEEPAK CHOPRA, MD and ANDREW WEIL, MD

THE FIBROMYALGIA CHEF, by Mark Pellegrino, MD and Ann Evans. Anadem Publ. 800/633-0055, $19 w/ S & H. More is cheaper. The humor and the wonderful tips on how to make cooking fibromyalgically easier, are the highlights of this book.

BOOKS I'M ABOUT TO READ

UNDERSTANDING POST-TRAUMATIC FIBROMYALGIA, by Mark Pellegrino, MD, Anadem publishing (800) 633 0055, $16.25.

IT'S NOT ALL IN YOUR HEAD, by Susan Swedo, MD & Henrietta Leonard, MD, HarperSan Francisco, $25. In bookstores & at (800) 242 7737.

RUNNING ON EMPTY; The Complete Guide to CFIDS by Katrina Berne, PhD, Hunter House Publisher, Alameda, CA, $14.95, 2nd edition, (510) 865 5282. Author is a fabulous woman. Heard her in Phoenix.

MANAGING PAIN BEFORE IT MANAGES YOU, by Margaret Caudill, MD, Phd, The Guildford Press, NYC (800) 365 7006 & (212) 431 9800

MUSCULOSKELETAL PAIN EMANATING FROM THE HEAD & NECK, Edited by Murray Allen, MD, Haworth Medical Press, 10 Alice St., Binghamton, NY 13904-1580 - A lot of post-traumatic stuff.

FULL CATASTROPHE LIVING, Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness; by John Kabat-Zinn, PhD; Dell Publishing; $12 soft cover.

SPONTANEOUS HEALING; How to Discover & Enhance your Body's Natural Ability to Maintain and Heal Itself; by Andrew Weil, MD; Knopf THE CHRONIC PAIN CONTROL WORKBOOK, Ellen Mohr Catalano, MA, New Harbinger Publications, Oakland,CA

SCREAMING TO BE HEARD, Hormonal Connections Women Suspect ...and Doctors Ignore by Elizabeth Lee Vliet, MD, M. Evans & Co., Inc., NY. $29.95 in book stores.

PAIN: THE GIFT THAT NOBODY WANTS, Brand Yancey , Harper Collins 1993.

MYOFASCIAL PAIN SYNDROME DUE TO TRIGGER POINTS; David Simons, MD Publ by Gebauer Co., 9410 St. Catherine Ave., Cleveland, OH 44104. (800) 321 9348. No charge as of 7/96. A 39 p. booklet which explains the physiology, diagnosis, & treatment of MPS & FMS. Diagrams for exercises too.

CLINICAL BULLETIN OF MYOFASCIAL THERAPY, Haworth Press

FIBROMYALGIA and MUSCLE PAIN, Leon Chaitow, Harper & Collins, Thorson Health Series, Amazon.com.

The books & periodicals listed are only those with which the list's author is familiar. 1/98

NEWSLETTERS & PERIODICALS

THE FIBROMYALGIA TIMES PO Box 21990, Columbus OH 43221-0990; Tel: (614) 457 4222. Fax: (614) 457 2729. This newsletter is a very good one particularly for newcomers. $25 a year; published quarterly by an FMS veteran who's very well known in the field.

THE MEssenger - NEWSLETTER OF THE M.E. ASSN.of CANADA (Myalgic Encephalomyelitis & CFIDS) 400-246 Queen St., Ottawa, Ont. K1P 5E4 Canada (613) 563 156528 p. monthly newsletter, $40 a yr. Info not only about ME / CFIDS, but also on related disorders, particularly FMS. Quite complete and wonderful.

TO YOUR HEALTH INC, A Natural Goods Company 11809 Nightingale Circle, Fountain Hills, AZ 85268 Send for your free FMS newspaper written about FMS, CFIDS, Arthritis & Chronic Pain. It has up-to-date info on what's new in FMS in addition to good material on herbs, supplements, etc.

FIBROMYALGIA FRONTIERS, Newsletter of the FM ASS'N. OF GREATER WASHINGTON (DC) (FMAGW) 12210 Fairfax Towne Center, Suite 500, Fairfax, VA 22033. Fax: (703) 273 9208 $25 new members: $21 for renewals. Membership includes New Member Packet & a very handy handbook. An excellent newsletter with important info. FMAGW also has superb programs, with major experts as speakers, as well as video & audio tapes.

THE FIBROMYALGIA SURVIVOR'S NEWSLETTER, c/o Alma-Ruth Crawford, 92 Orchard St., Rockville, CT 06066-3005, $10 for 6 issues a year. I like this newsletter. It's newsy, and personal & has lots of good FMS survival tips.

FIBROMYALGIA NETWORK NEWSLETTER PO Box 31750, Tucson, AZ 85751-1750 (520) 290 5508. One of the 1st FM organizations, its newsletter is excellent. $19 yr.

NETWORK NEWS, Newsletter of the CT. CFIDS ASSN, INC., PO Box 9582, Forestville, CT 06011, ATTN: Membership. $20 donation. Org. includes FMS. I'm so proud that there is such a good newsletter in the Northeast! This org. also has materials such as a Social Security Resource Packet, an ADA & Labor Packet, a Children's Information Packet, workshops, conferences, etc.

MPWC NEWS, Newsletter of Medical Professional/Persons with CFIDS. $20 for membership & quarterly newsletter to MPWC/s, Lori Clovis, PO Box 144, Hinsdale, NY 14743. Targeted mainly for people in all areas of the medical profession who got CFIDS on the job to educate them and the medical world about CFIDS. Great idea!

NATURAL HEALTH, Subscription Dept., PO Box 52372, Boulder, Colorado 80323-2372 ($24 for 1 year of 6 issues) Also at Health Food stores. A 170 page quarterly magazine full of all kinds of info on healthy living. Excellent! Articles on nutrition, exercise, mind/body stuff, recipes and lots more. Andrew Weil, MD is a major contributor. Should become your monthly bible! Don't pass it up.

FM FORUM; PO Box 15455, Vancouver, BC V6B 5B2 Canada, (604) 540 0488, (604) 255 5836 fax; E-mail BCFMS@alternatives.com; a quarterly publication of the British Columbia Fibromyalgia Society. Patient friendly and medically up to date, this organization's newsletter is very good. $20 donation for a yearly subscription.

JOURNAL OF MUSCULOSKELETAL MEDICINE 55 Holly Hill Lane, Greenwich, CT 06830. A fine peer reviewed journal which covers all types of musc./skel. disorders. It publishes a lot of Fibromyalgia articles.

ALBERTA ARTICULATOR (formerly UPDATE M.E.) (The FM/ME Society of Alberta) $18; Box30402, 1323 N - 6455 Macleod Tr. SW, Calgary, Alberta, T2H 2W2 Canada. A lot of good stuff comes out of Canada. This is good stuff. It's a good read and has a nice variety of ME/FMS articles.

INLAND NW FM NEWS (Inland NW FM Assoc.) 933 W Third Ave, Suite 211, Spokane, WA 99204-1527. Among other things, this organization writes about new FM research and opinions. They ask for a $20 donation in return for a yearly, quarterly subscription.

NUTRITION ACTION NEWSLETTER, Center for Science in the Public Interest; 1875 Connecticut Ave., NW, Suite 300, Washington DC 20009-5728, (202) 332 9110; 10 yearly issues; $24 one year; $42 two years; $58 3 years U.S; outside US is higher. The Center for Science is a well known org. that lobbies on behalf of improved food & nutrition standards (even labeling) in the US. Theirs is a 16 page newsletter with up-to-the-minute product information, good advice on nutrition, a few recipes, latest developments in the health industry, etc. A subscription to this is a donation well placed.

THE UNIV. OF CALIFORNIA at BERKELEY WELLNESS LETTER; Subscription Dept., PO Box 421048, Palm Coast Florida 32142. $24 I subscribe to other University newsletters, but Berkeley's is my favorite. It's a monthly, 8 page newsletter.

TENDER POINTS (Ontario Fibromyalgia Association) 3939 University Ave, Suite 1701, Toronto M5G 1E6, (416) 979 7228 $17 Canadian. A very nice house organ for the membership of this Association. Published 3 times a year.

Feeling THE PULSE Rocky Mountain FMS/CFS Support Foundation, 980 W.7th Ave, Broomfield, CO 80020 (303) 466 3505. $12 - the best bargain in the FMS world.

JOURNAL OF MUSCULOSKELETAL PAIN Haworth Press, 10 Alice Street, Binghamton, NY 13904 A peer reviewed medical journal focused on Fibromyalgia, Chronic Fatigue & Myofascial Pain Syndrome. Lay people should read this as well. It contains the latest info on developments in research written by the most well known practitioners in the field. $28.

VIDEO TAPES

"STRETCHING" by Dr. Sharon Clark & Dr. Robert Bennett. $24.95 to National Fibromyalgia Research Association, (a non-profit organization that funds FMS research), PO Box 500, Salem, OR 97308.

"FIBROMYALGIA AND YOU" produced by I. Jon Russell, MD, PhD. $34.95 to: Fibromyalgia Information Resources, PO Box 690402, San Antonio, TX 78269

"FIBROMYALGIA EXERCISE VIDEO" (with Patty Bourne). $24.50: Oakville-Trafalgar Memorial Hospital, Physio- therapy Dept., 327 Reynolds St., Oakville, ON, Canada l6J 3L7 (905) 338 4613

MULTI-DISCIPLINARY PROGRAMS

THE FIBROMYALGIA CENTER, 747 Chestnut Ridge Rd., Chestnut Ridge, NY 10977, (914) 352 0063, Barbara Gordon-Cohen, DO, Dir - Terrific holistic pain & treatment center. Among modalities are: hypnotherapy, cranial osteopathy, integrative body work, acupuncture.

ABBOTT NORTHWESTERN HOSPITAL, Arthritis Care Program, 800 East 28th St., Minneapolis, MN 55407-3799 or contact Julie Kelly (612) 863 4774 With Julie Kelly's and Rosalie Devonshire's book Taking Charge of Fibromyalgia, this program offers a complete self management program for FM.

THORSON PAIN REHABILITATION CLINIC 149 East 15th St., No. Vancouver, BC V7L 2P7, (604) 984 PAIN (7246). Contact Sharan Green. A multidisciplinary pain treatment program with a program that includes stress management, biofeedback, massage therapy, physiotherapy, psychology, headache therapy, pain education, acupuncture, nerve blocks, prolotherapy, trigger point therapy & more.

LOURDES ARTHRITIS CENTER 161 Riverside Dr., Ste MO2, Binghamton, NY 13905, (800) 235 2775. Multi-disciplinary services coordinated by Nurse Practitioner Case Manager, & they include: PT, MT, Nutrition, psych, OT, Vocational Rehab, exercise Physiology, etc. Lots of caring people doing terrific things, I hear.

CEDARS SINAI Pain Program, Los Angeles, CA, Stuart Silverman, MD, et al. In and out patient programs. Workers comp, private insurance, etc. Excellent, varied & successful program. 8700 Beverly Blvd, LA,CA 90048 1865, Jeanne Melvyn, (310) 855 6161 for info.

CENTER FOR MIND-BODY MEDICINE, Washington, DC James S. Gordon, MD, Founder & Director, 5225 Connecticut Ave., NW, Suite 414, DC 20015; (202) 966 7338 Fax (202) 966 2589 Fax, E-mail cmbm@ids2.idsonline.com. A well rounded 12 week program. Dr. Gordon has also written Manifesto for a New Medicine, Your Guide to Healing Partnerships & the Wise Use of Alternative Therapies.

KENTFIELD REHABILITATION HOSPITAL, FIBROMYALGIA CLINIC, 1125 Sir Frances Drake Blvd, Kentfield, CA 94904, (415) 485 3544 for info. Paul Davidson, MD, Medical Director. 20 minutes north of San Francisco. 2 outpatient programs; 1 for local folks and the other,a 5 day program, for people out of town. Physical therapy, biotherapy & psychology.

NEWTON/WELLESLEY HOSPITAL Kenneth H. Kaplan, MD, One Washington St., Suite 203 B, Wellesley, MA 02181; (617) 235 8848. This is the program to which Don Goldenberg MD sends his local patients. It's a 10 week mind body stress reduction program for FMS.

OREGON HEALTH SCIENCES UNIVERSITY, FMS TREATMENT PROGRAM Robert Bennett MD, Med. Dir., Gay Spencer Progr.Mngr., Sharon Clark RN,Phd Ex.Physiologist, Carol Burkhardt, RN, PhD, Stephen Campbell, MD Staff Rheum., Arther Wiens, PhD Staff psych., Connie O;Reilly PhD, Consulting Psych. With such famous names, can there be a better program?

PAIN CLINIC NORTHWEST, 2201 So. 19th St., Tacoma, WA 98405 (206) 627 1212 10 week comprehensive FMS treatment program

REHABILITATION & PAIN MANAGEMENT ASSOCIATES, PA.; Norman B. Rosen, MD; 2 locations; Towson, MD (410) 821 7775 & Owings Mills, Md, (410) 363 7246 Phys.Med, electromyography, nerve studies, themography, neuromusc. disorders, phys. therapy, psychosocial therapy, acute & chronic pain mngmnt., industrial injuries, sports med.

SCRIPPS MEMORIAL HOSPITAL Pain Center, 9888 Genesse Ave., PO Box 28, La Jolla, CA 92038-0028,(619) 455 9100 A full service and extensive multi- disciplinary program.

SUNNYVIEW REHABILITATION HOSPITAL, Pain Program Office, 1270 Belmont Ave., Schenectady, NY 12308; (518) 382 4594 Has a brochure that describes the Fibromyalgia Treatment Program. An extremely broad based program.

YORK COUNTY HOSPITAL REHABIITATION DEPARTMENT, 596 Davis Dr, Newmarket, Ontario, L3Y2P9, Canada (416) 895 4521 & (416) 853 2220 fax; A very comprehensive, multi-dimensional program.

This list of multi-disciplinary programs is in its infancy. There are many more in No. America , and they will be included when mother unearths some available time. 1/98

TREATMENT MODALITIES

The below list is incomplete. It's alphabetically listed, and it represents a variety of modalities in the broad spectrum of complementary medicine. The multi-disciplinary approach to treating FMS is universally recommended, so a combination of the below is the best approach. Pick and choose, and use the ones which make you feel the best.

Please consult a doctor regarding anything on this list (not just the meds). I'm simply an informed patient, not a doctor, so any info I give you must be filtered through a professional.

  • Acupuncture, either electrical or traditional; also reflexology & acupressure
  • Avoidance & elimination of noxious smells, sounds & lights
  • Biofeedback
  • Cognitive Behavior Therapy
  • Cranio-sacral release
  • Deep breathing
  • Dry needling
  • Doctor-patient relationship that is mutually respectful & medically appropriate!
  • Education about FMS
  • Efficiency improvement aimed at simplifying life
  • Exercise including:
    • Low Impact Aerobics
    • Stretching
    • Strengthening
    • Walking
    • Warm water swimming
  • Feldenkreis movement therapy
  • Fun distractions of all kinds
  • Helping other people w/FMS or other chronic conditions
  • Hypnotherapy
  • Involvement in things other than FMS
  • Laughter
  • Lots of good light but not at bedtime.
  • Massage, only by a professional experienced with FMS. Might include <
    • Myofascial Release or Myofascial massage
  • Medicines (only with doctor's approval):
    • Capsaicin - Zostrix - topical ointments
    • DHEA
    • Flexoril (Cyclobenazaprine)
    • Minerals and herbals such as magnesium, Malic Acid, Ginkgo Biloba, CoQ10, Zinc, St. John's Wort, Kava & others
    • Trazadone/Desyrel
    • SSRI's, e.g. Prozac, Paxil Zoloft, Effexor
    • Tricyclics, e.g. Amitriptyline (Elavil, Endep); Imipramine (Tofranil, Jamimine); Nortriptyline (Pamelor, Aventyl): Desipramine (Norpramin); Clomipramine (Anafronil); Doxepin (Sinequan, Adapin); Protriptylene (Vivactil); Venlafaxine (Effexor)
    • Vitamins
    • Wellbutrin
    • And others
  • Meditation
  • Music (especially Mozart)
  • Nutritious diet
  • Posture management
  • Physiotherapy only with PT trained in FMS treatment
  • QiGong (precursor to T'ai Chi)
  • Prayer
  • Relaxation techniques
  • Sleep hygiene - including comfort of bedroom, light, etc.
  • Spray & Stretch
  • Support Group (SG) Participation (in positive SG's only)
  • Stress Management
  • T'ai Chi
  • TMJ treatments - these are very new
  • Visualization
  • Work Reduction
  • Yoga

    Please feel free to recommend additional modalities that have worked for you. Thanks.

    TO HELP FUND IMPORTANT FMS RESEARCH, CONTACT:

    National Fibromyalgia Research Association (NFRA), PO Box 500, Salem, OR 97308 (503) 588 1411; Fax: (503) 315 7212. Rae Gleason.

    American Fibromyalgia Syndrome Association (AFSA), clo Fibromyalgia Network, PO Box 31750, Tucson, AZ 85751-1750. Kristin Thorson.

    Betsy in NY - Fibrobetsy@aol.com

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