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The name Fibromyalgia was coined in the 1980s to replace "fibrositis." By now, many hundreds of medical papers have been written on the subject, and only diehard individuals continue to deny its existence. Typical symptoms, along with a cyclic progression from intermittently-normal to the eventually bad-to-worse periods, lead informed physicians to the diagnosis.
There are no tests diagnostic of fibromyalgia, but they are performed to exclude other diseases. Patients are often told that they have chronic fatigue, chronic candidiasis, myofascial pain, irritable bowel or the vulvar pain syndromes when these are usually facets of the same illness. Combining some symptoms while ignoring others may simply 'create' a non-disease and miss the reality of fibromyalgia. Patients parade from one doctor to another, but only symptoms germane to a given specialty may get the attention the much larger problem requires.
Fibromyalgia has no fixed symptoms, and many combinations from the following list are possible. Individual pain perception varies so greatly that high threshold individuals may lack any of the 11-out-of-18 tender points required by the American Academy of Rheumatology for diagnosis. Patients may suffer overwhelming symptoms of fibromyalgia yet be falsely diagnosed with one of the above pseudo-syndromes for lack of typical tenderness. We urge physicians to make body maps (see below) to provide meaningful, objective evidence instead of seeking the subjective tender points that may be absent.
Central Nervous System: Fatigue, irritability, nervousness, depression, apathy,
listlessness, impaired memory and concentration, anxieties and suicidal thoughts. Insomnia
and frequent awakening result in non restorative sleep.
Musculoskeletal: Any involved muscle, tendon, ligament or fascia can produce pain. Usual areas are the shoulders, neck, upper and lower back, knees, inner and outer elbows, wrists, hips, and chest. Old injured or operative sites are often affected. Though conventional wisdom states otherwise, patients often complain of joint pains, with or without swelling, redness or heat. Generalized stiffness, especially in the morning is common.
Irritable Bowel: Often called leaky gut, spastic colon or mucous colitis. Symptoms include nausea (often in repetitive waves), indigestion, gas, bloating, cramps, constipation or diarrhea and sometimes mucus in the stools.
Genitourinary: Pungent urine, frequent urination, bladder spasms, burning on urination (dysuria) with or without repeated infections and interstitial cystitis are common. The term vulvodynia (vulvar pain syndrome) includes vaginal spasms, irritation of the vaginal lips (vulvitis) or opening (vestibulitis); generalized irritation that mimics a yeast infection; intense PMS with uterine cramping, and painful intercourse (dyspareunia). All the symptoms of fibromyalgia are generally worse premenstrually.
Dermatological: Rashes such as hives, red blotches, tiny bumps, eczema, seborrheic or neurodermatitis, and blisters occur. Also: itching with or without a rash. Skin areas suffer increased sensitivities such as coldness or burning (especially palms and soles of feet), crawling, electric-vibrating, prickling or flushing with or without excessive sweating.
Miscellaneous Symptoms: Headaches, dizziness or imbalance (often of neck origin); blurred vision, itching or dry eyes; nasal congestion and post-nasal drip; abnormal tastes (bad, scalded, metallic) and irritated tongue; sounds such as ringing; numbness and tingling of the hands, feet or face; leg or foot cramps; weight gain; brittle nails, premature loss of hair due to its poor quality; low grade fevers; greater susceptibility to infections. Sensitivities may develop to sounds, odors or chemicals. Morning swelling of eyelids and hands from fluid retention that gravitates to the lower extremities by evening, stretches tissues and causes restless leg syndrome.
Hypoglycemia Syndrome: This is a separate entity that can be induced by fibromyalgia. Forty percent of fibromyalgic women and 20 percent of men suffer both conditions simultaneously. The symptoms overlap those of fibromyalgia, but sugar craving accompanied by tremors, sweating, heart palpitations, faintness and frontal headaches when hungry are clues to the diagnosis. This subject is fully addressed in a separate paper where the dietary treatment is also outlined. Concurrent hypoglycemia must be treated or the patient will not feel well despite the successful reversal of fibromyalgia.
From our 38 years of experience treating the disease, we conclude fibromyalgia is inherited. Trauma, infection or stress can aggravate fibromyalgia but are only rarely its cause. Careful questioning unveils the cyclic, telltale symptoms that begin much earlier than patients suspect, often presenting as growing pains in childhood. Symptoms may ease during the true growth spurt of puberty but eventually reappear with progressive intensity. We have treated members of several fibromyalgic families that span three generations. We have treated nine 4-year-old children and others whose symptoms only began in their 70s, an age spread that strongly suggests a multi-genetic disease.
More than 80 percent of patients are women. Joint complaints long precede any discernible X-ray damage, and we believe that fibromyalgia, if neglected, ultimately leads to osteoarthritis, the 'tartar of joints.' Almost 40 years ago, a patient using a gout medication could chip tartar (calculus) off his teeth with his fingernail. This observation alerted us to a larger, systemic problem since the dental deposit is composed of calcium phosphate that crystallizes from saliva.
We believe there is a genetically defective kidney enzyme, which causes phosphate retention to accumulate to critical levels within cells. This interferes with energy formation, a substance called ATP, and to a malfunction in susceptible tissues. Excess phosphate induces calcium retention, and together they cause all of the manifestations of fibromyalgia. We describe the basis of this theory in another paper written primarily for physicians. Fibromyalgia would be more appropriately named Dysenergism to better describe the overwhelming fatigue and the metabolic disturbances throughout body tissues.
We have replaced our gout medications with guaifenesin, a medication that is totally safe, even for children. It is marketed to loosen mucus and has been used in some form for 70 years, over the past 20 in various cold and cough preparations. It is more potent for treating fibromyalgia than our previous drugs. Patients begin treatment with 300 milligrams (one-half tablet) twice a day for one week, an amount adequate for only 20 percent of individuals. If they feel distinctly worse, this is their correct dosage, and they should stay at that amount. If there is no worsening of symptoms, we increase their dose to 600 mg. (a full tablet) twice daily. Reversal begins for 70 percent of patients at one of these two levels, but 30 percent will need a higher dose.
The worsening of symptoms or appearance of new ones is the signal that reversal has begun. Better hours gradually appear, eventually cluster into days and finally weeks. Like a bouncing ball, the up-and-down symptoms gradually ease, and the patients' lumps and bumps soften, break up and clear. However, damaged structures from whatever cause cannot be reversed. Treatment clears fibromyalgia in less time than it took to develop. Every two months at the proper dose should reverse at least one year of accumulated debris. The longer the duration of the illness, the more time will be needed for total clearing.
The original 1843 description of Fibromyalgia as a "type of rheumatism with hard and tender places" still applies today. Seeking tender points in a few preordained parts of the body has limited value compared to the total body maps we produce. With moderate pressure we use our fingers to feel for swellings (lesions) within muscles, tendons and ligaments. We sketch them on a printed caricature to record their location, size and degree of hardness for future comparison. (see figure 1) We do not include painful sites if they are not swollen, since tenderness may change from day to day and is totally subjective.
We repeat this procedure at each subsequent visit and hide previous maps until we complete a new one. This provides us a visual and objective record to monitor changes at a glance and greatly reassures patients of their progress. We ask them to note variations in their pains, fatigue and emotional swings between visits. Our mutual input makes it fairly easy to find the dosage of guaifenesin and to confirm the regression of fibromyalgia.
Aspirin and other salicylates completely block the benefits of all the medications we have used, including guaifenesin. Patients and physicians who do not heed this warning will assume treatment failure. There are many sources of salicylates (salicylic acid), and all may totally interfere with guaifenesin at the kidney level. Plants manufacture salicylates in various quantities and store them in their barks, leaves, roots, and seeds as a weapon against soil bacteria and fungi. Therefore we have seen herbal medications and even an excessive intake of tea blocks the benefits of guaifenesin. Plant extracts (botanicals) for topical use must be avoided since the skin rapidly absorbs salicylates. The word "natural" usually refers to some plant additives, and although it makes products sound safe and desirable, poison ivy, hemlock and oleander are also natural.
We cannot predict how easily a given person will be blocked, since it depends on one's genetic make-up. Assume you are very sensitive and conduct a thorough search of the ingredients in all your current or future replacement products. Manufacturers make sudden changes. Products that list active ingredients should alert one to presumably inactive ones as well. The term beta-hydroxy as used in the cosmetic industry means salicylic acid.
The following is a guide and a partial
list at best of hidden sources of salicylates:
(1) Used for pain: aspirin, salicylate, salicylic acid, salflex, salicylamide, salsalate, disalcid.
(2) All herbal medications such as St. John's Wort, gingko biloba, blue-green algae, Echinacea, butchers' broom; supplements, such as vitamins E or C if derived from rose hips or bioflavonoids.
(3) Flavored lozenges (menthol, mint, peppermint, spearmint)
(4) Wart or callus removers (sal-acid plasters, sal-plant gel etc.) and many acne products.
(5) Creams, balms and lotions for muscle pain such as Ben Gay, Myoflex, Zostix (Capsaicin or capsicum)
(6) Medications such as Pepto Bismol or Urised with salicylate as part of the generic name.
Cosmetics and Topical Products:
(1) Skin cleansers or exfoliants that use salicylic acid or
betahydroxy acid (BHA).
(2) Hair shampoos, conditioners or sprays with plant derivatives (or salicylic acid).
(3) Bubble baths with herbal contents or essential oils.
(4) Lotions containing plant parts such as aloe, ginseng, lavender; almond, grape seed oils; rosemary, geranium, etc.
(5) Sun screens or tanning lotions with plant derivatives or words such as octylsalicylate.
(6) Lipsticks with aloe, camphor or castor oils.
(7) Wear gloves to avoid plant juices on the skin while weeding and gardening.
(1) Shaving creams with plant derivatives such as aloe, mint or mentholatum.
(2) Razors with aloe strips adjacent to the cutting edge as in most of the ones for women.
Oral Agents: (1) Mouth washes (Listerine, Scope) containing fresh mint, wintergreen or
the word salicylate.
(2) Toothpastes are mostly flavored with fresh mint and some have unlisted salicylates. Toms of Maine Fennel, Silly Strawberry and Orange are also acceptable. We continue searching for others.
(3) Breath savers or gums made with fresh mint, spearmint, wintergreen or peppermint. The mouth absorbs these within seconds; mint and mint oils are a potent form of salicylate.
PHYSICIANS CANNOT BE EXPECTED TO KNOW OR TO RECOGNIZE ALL THE INGREDIENTS IN TOPICAL PREPARATIONS. WE REPEAT, YOU AND THEY WILL THINK GUAIFENESIN HAS FAILED IF YOU DO NOT COMPLETELY PURGE SALICYLATES. THIS IS YOUR RESPONSIBILITY.
Consult your dictionary and avoid contents you cannot identify. Call manufacturers to ask about both salicylates and plant sources. People with whom you speak will not usually know that plants contain salicylates.
No diet is required for fibromyalgia. The liver detoxifies the tiny amount of salicylates contained in plants, and they will not block guaifenesin.
The drug mixes with any medication. Ingesting guaifenesin by taking decongestants or cough medicines is potentially dangerous due to various additives, and all of these compounds have side-effects. No patent remains on guaifenesin; it is an inexpensive drug made by generic manufacturers, and all are equally effective.
Pain medications such as acetaminophen (Tylenol), Ultram, Darvocet-N, Advil, Aleve or other non-steroidal anti-inflammatory drugs will not block guaifenesin. We abhor the use of narcotics (such as codeine derivatives) including hydrocodone (Vicodin), because of their addicting potential even though they do not block guaifenesin.
Our treatment is not for the weak of courage. Reversal of the disease reproduces most past symptoms and may cause some new or long-forgotten ones to surface. The intensity of this period often causes concern during the initial weeks of reversal. They are not guaifenesin side effects. Most patients realize they are getting inevitably worse, and that medical Band-Aids applied to ease symptoms condemn them to a partial life at best. This gives them the determination to begin treatment and to persevere.
Fibromyalgics with hypoglycemia must follow a low carbohydrate diet as prescribed, or they will not feel better, even though the lesions of fibromyalgia will soon clear with guaifenesin. Though not mandatory, fibromyalgics with carbohydrate craving will get a "jump-start" with similar dietary modifications for the first 60 days of treatment.
Carbohydrates (sugars and starches) release insulin. This hormone not only induces kidney reabsorption of phosphate but also drives it into various cells, which, as our theory suggests, intensifies symptoms. Elimination of the following foods prevents wide fluctuations of blood sugar, which lessen attacks of drowsiness and permits a significant surge in energy.
FOODS TO AVOID STRICTLY:
SWEET WINES, FRUIT BRANDY AND CHAMPAGNE, DRIED FRUITS AND FRUIT JUICES, BAKED BEANS, REFRIED BEANS. LIMA BEANS, BARLEY, BLACK-EYED PEAS (COWPEAS), RICE, BANANAS, PASTAS (ALL TYPES), BURRITOS AND FLOUR TORTILLAS, POTATOES, TAMALES, CORN, SWEETS OF ANY KIND
DEXTROSE, GLUCOSE, HEXITOL, MALTOSE, SUCROSE, HONEY, FRUCTOSE, CORN SYRUP, OR STARCH. CAFFEINE AND ALCOHOL ARE FORBIDDEN FOR HYPOGLYCEMICS ONLY.
For more information:
This is not a bibliography in support of our theory. (Interested physicians may contact us for a theoretical, more technical paper, which discusses the possible biochemical abnormalities and lists journal references.)
1. Begoun, Paula: Don't Go to The Cosmetic Counter Without Me. Washington: Beginning Press, 1996 www.cosmeticscop.com
2. Fibromeet: Nancy Medeiros, Director. c/o Creative Encounters P.O. Box 461377 Escondido, CA. 92046-1377. (Videotapes, pamphlets and articles available to order) www.csusm.edu/public/guests/nancym/fibromt.htm
3. The American Journal of Medicine Proceedings of a Symposium The Fibromyalgia/Fibrositis Syndrome September 29, 1986.
4. The American Journal of Rheumatology: Fibromyalgia Syndrome, November 1989.
5. Andrea Rose Salicylate Free Skin Care Products. To order call (toll free) -1-888-712-ROSE
6. Starlanyl, Devin M.D. and Copeland, Mary Ellen:
Fibromyalgia and Chronic Myofascial Pain Syndrome -A Survival Manual. Oakland, Ca. New
Harbinger Publications Inc., 1996.
Starlanyl, Devin M.D.: The Fibromyalgia Advocate. Oakland, Ca. New Harbinger Publications, Inc. October 1998. www.sover.net\`devstar
7.Williamson, Miryam Erlich: Fibromyalgia: A Comprehensive Approach. New York: Walker and Co.1996 The Fibromyalgia Relief Book, 213 Ideas for Improving Your Quality of Life, 1989. www.shaysnet.com/wmson
8. Ruth M. S.: A Consumer's Dictionary of Cosmetic Ingredients. New York: Crown Trade Paperback, 1994
9. The Vulvar Pain Foundation: Joanne Yount, Director Post Office Drawer 177.Graham NC 27253. Tel: (336)-226-0704 www.vulvarpainfoundation.org
10.St. Amand, M.D., R. Paul and Marek,
Claudia: The Use of Uricosuric Agents in Fibromyalgia: Theory, Practice and a Rebuttal to
the Oregon Study of Guaifenesin Treatment Clinical Journal
St.Amand, M.D., R. Paul and Marek, Claudia: A Description of Fibromyalgia and Hypoglycemia: Their Combined Morbidity and Therapy with Guaifenesin and Diet. AAEM Symposium Syllabus, 1998.
R. Paul St. Amand, MD, Assistant Clinical Professor Medicine, Endocrinology -- Harbor-UCLA
Claudia Craig Marek, B.A., Medical Assistant
4560 Admiralty Way Suite 355
Marina Del Rey, CA 90292
Phone (310) 577-7510
Fax: (310) 821-0664