Fibromyalgia

by Janet Dauble

(Bolding of words by Janet)

Over the twenty plus years that I have directed Share, Care and Prayer, many people have asked me what do I think and what do I know about Fibromyalgia (FM). My answer to them comes from my own experience with FM, from hundreds of patients, and from conference presentations and books written by physicians who successfully treat FM.

When I suffered from significantly severe FM symptoms over thirty years ago, the condition did not have a diagnosis, a network of physicians and researchers, nor a network of support groups. As much as I would have liked to find a doctor treating what I had and to know others who suffered from the symptoms I had, I was actually fortunate that this information was not available as yet. It gave me the opportunity to find out the truth about what was causing my pain and disability, and to be able to get better.

I found out, to my shock, at age 35, that I was highly food allergic. I immediately went on a diet and the doctor gave me a series of B12 shots. Bingo! My life changed. Before I found out about my food sensitivities, I had so much pain I could hardly stand on my feet for more than five minutes, hold a wash cloth in my hand to take a shower or wash dishes, hold the phone to my head, sew or write, kneel on my knees, or sit on an unpadded pew in church without my rear end going numb. (I couldn't even sit up without a back support for more than a few minutes.) It was hard to get to sleep at night because of pain. I could feel all the mattress springs. And I had so much neck pain upon waking in the morning that I had to roll over on my side and roll out of the bed with my head down. I had many other symptoms as well. But, after being on an allergen -- free diet for six months, my pain was alleviated. My strength, balance, coordination and breathing capacity were renewed, and I was able to take up ice skating! It is now years later. I work more than full time and have a fairly normal physical life.

I forgave all the doctors I had seen over a fifteen year period for not diagnosing me correctly and helping me because I thought I was probably an anomaly. But then I found out that there was already a network of doctors and support groups set up to help people with a myriad of symptoms like mine from an environmental standpoint -- by paying attention to diet and lifestyle to avoid the allergens causing symptoms.

A list of allergy symptoms affecting different organ systems can be found under the "Environmental Illness" section on this web site. Musculoskeletal symptoms found by Marshall Mandell, M.D. when testing his patients included: fatigue, generalized muscle weakness or pain, joint pain, or swelling with local redness, stiffness, joint deformity, arthritis, soreness, chest pain, backache, neck muscle spasm, shoulder muscle spasm, generalized spasticity, limping gait, and limitation of motion.

Here is a small study which SHOULD cause everyone diagnosed with FM to sit up and take notice:

Note that 100% tested positive for food sensitivity and 83% tested positive for chemical sensitivity (chemicals used in everyday products).


Dr. Randolph

Dr. Rea who performed the above study is the president of the Environmental Health Center which has seen approximately 30,000 chronically and acutely ill people who were found to be sensitive to food, chemical, mold, metal, etc. Dr. Rea was one of the doctors taught by the late Theron Randolph, M.D., the Father of Clinical Ecology/Environmental Medicine (see Environmental Illness, Randolph's Disease). Dr. Randolph had discovered that petroleum used in everyday products could cause sensitivity to common foods and the chemicals in everyday products. This led to chronic symptoms/reactions. This is because exposure to someone's newly acquired sensitivities is ongoing. And, because the exposures were chronic and ongoing, sick people could not make a connection between a food, etc. and a symptom such as fatigue or pain. Here is a short paper of Dr. Randolph's published in 1962.

"Environmental incitants of chest, neck, and shoulder pains," J. Lab & Clin. Med, December 1962. Chronic chest, neck, and shoulder pains of several descriptive types may be perpetuated in specifically susceptible persons by exposures to given foods and chemical incitants (spray residues on foods, odors of insecticide sprays, utility gas or its combustion products, automotive exhausts, paint odors, etc.) Avoidance of probable incitants relieves chronic symptoms. Re-exposure induces acute test responses which demonstrate causation.

Reactions consist of: (1) acute bursitis-type pain, localized to the supraspinatus tendon insertion, (2) acute torticollis, characterized by nodular tenderness and pain of the trapezius muscle, (3) deltoid myalgia, and (4) pectoral myalgia, usually characterized by localized tenderness and pain, accentuated by motion of the arm of the affected side, (5) intercostal myalgia, usually localized to a small tender interrib area and accentuated by motion of the rib cage, (6) sensations of heaviness, pressure, and/or viselike pain, associated with dyspnea and orthopnea, most commonly localized to the anterior and mid-chest. These pains may radiate to the back, neck, shoulders, and sometimes to the wrist or lesser fingers. The duration of the distress being longer than in anginal attacks, makes it difficult to rule out acute myocardial infarction. Depressed T-waves of electrocardiogram may be present in chronic phases and sometimes may be induced in acute attacks. Although this syndrome commonly occurs in asthmatic persons, it may or may not be accompanied by coughing or wheezing.

Several of these symptom syndromes may coexist.

Acute bursitis-myalgia attacks usually develop several hours after isolated exposures. The chest pressure-pain syndrome may be either immediate or delayed.

Chronic reactions are best treated by avoiding specifically incriminated agents. Treatment of acute ingestion reactions consists of emptying the gastrointestinal tract by means of saline laxatives or 10 to 12 Gm. of equal parts potassium and sodium bicarbonate in a quart of water orally or rectally, as soon as possible after onset. Inhalation reactions are best treated by oxygen therapy.

Dr. Randolph wrote a chapter "Ecologically Oriented Myalgia and Related Musculoskeletal Painful Syndromes" for the book Clinical Ecology, published in 1976. In light of how FM is now diagnosed, it is fascinating how Dr. Randolph had the symptoms down pat so long ago:

Despite these reports, the subject of allergic myalgia remained poorly recognized and rarely investigated. This unsatisfactory status prompted the writer to report his clinical experience in 1951, citing several detailed case reports. The conclusion of this article will be summarized briefly. The allergic response involving skeletal musculature is most commonly localized to the muscles of the posterior cervical region, upper back, and shoulders. [A person suffering from FM can often be seen rubbing the base of his neck and shoulders.] Pulling and drawing sensations, tautness, stiffness, and aching pain, involving the nuchal muscles and occurring both with and without associated headache, are commonly encountered.

Myalgia of the posterior cervical muscles, calf muscles, the hamstrings, lower muscles of the back, pectoral muscles, intercostals, and the rectus abdominus occurs in the relative order listed. The fact that these manifestations may be reproduced at will under experimental circumstances -- that is following the trial ingestion of allergenic foods or the overdosage of house dust extract or massive exposure to house dust in individuals susceptible to house dust–and that such chronic symptoms may be relieved following the avoidance of incriminated ingestant allergens and by avoidance of specific therapy in dust sensitive individuals is the basis of the claim that such manifestations are of allergic origin.

Identical clinical responses have also been observed to result from hydrocarbon and related environmental exposures, since it is impossible to tell in advance whether foods, ingested food additives and contaminants, inhaled dusts or other particulates, or fume air pollutants are involved, these cases are best approached from the standpoint of comprehensive environmental control in an ecologic unit of a hospital [no inpatient ecologic units are active at this time].

From the clinical standpoint, myalgia may be a specific allergic response of striated musculature; it may involve a particular segment of a given muscle, an entire muscle, regional groups of muscles, or generalized muscle soreness and aching, especially upon arising the following morning after the ingestion of specific allergenic foods the previous day. Afflicted individuals sometimes describe this generalized reaction as "aching all over" or liken it to the feeling of having been severely pummeled the preceding night. Of the various localized reactions, involvement of the posterior cervical muscles, especially the trapezius and sternocleidomastoid muscles, seems to occur most commonly.

Tender Points

Dr. Randolph even nailed down the symptom used commonly today to describe FM. Think of the line drawing of a woman with spots designating tender points. This is what he said:

More specifically, complaints of patients' presenting the manifestations of allergic myalglia range from nagging sensations of pulling, drawing, tautness, and aching of involved muscles to sharply localized, severe cramp-like pains. The latter may or may not be associated with nodular areas of increased firmness and tenderness in the bellies or insertions of affected muscles. Those muscles involved commonly become gelled or more rigid during sleep so that either chronic or acute symptoms tend to be accentuated upon the first motion when awakening in the morning. Instances of acute torticollis, acute lumbago, or acute bursitis are common. Afflicted persons present, respectively, a "frozen" neck, back, or shoulder which is so painful on attempted motion as to preclude arising from bed, except most slowly and carefully. Other times, a sudden or unaccustomed motion during waking hours may precipitate pain sharply localized to the back, neck or other postural muscles so excruciatingly severe as to floor the patient. Such acute reactions may persist for a period of three to five days before full recovery.

Dr. Randolph was aware that allergic myalgia was not the diagnosis of choice for such pain, in fact he knew it was not even considered.

The most important point in making a tentative working diagnosis of allergic myalgia is to think of it. The fact remains that this possibility is rarely ever considered and is even more rarely approached by means of diagnostico-therapeutic measures capable of identifying and avoiding the most common environmental incitants and perpetuants of this condition -- namely, specific food addictants, environmental chemical exposures, and house dust.

Unfortunately, fifty years later, allergic myalgia still is not even thought of as the cause of FM and people suffering from such pain are not being tested for allergens. Here is what a new member wrote of her experience in trying to find a cause and treatment for FM:

I have suffered the effects of FM for three years and have only recently been diagnosed after trial and error, tests, multiple medications, physical therapy and numerous other IDEAS of what my problem could be. I am now under the care of a rheumatologist who, once again, is saying: LET'S TRY THIS!

No mention of the environment has been a part of my "diagnosis." Please tell me what you know about this -- it's the first I've heard.

Brain Fog, Fibro-Fog

Dr. Randolph even discussed brain-fag (what we often call "brain fog" to describe cognitive function problems). The Fibromyalgia network has named it "fibro-fog" and people taking chemotherapy for cancer call it "chemo-fog." This is how Dr. Randolph described it in his book An Alternative Approach to Allergies, 1980, in the following paragraph and in CLINICAL RESEARCH, 22:644A, 1974 (abstract) in the second paragraph:

Brain-fag is marked by confused thinking, moodiness, unexplained sadness, and apathy. Frequently, the individual with this phase of the problem cannot concentrate and may find it difficult to express himself. The term itself was first used in this context by an astute patient...who had come across this word in his extensive reading. [On] looking it up in dictionaries, I found that it has been in the English language for a century. I have continued to use it because it is one of the few descriptive terms that has not been "redefined" in psychiatric dictionaries.

Brain-fag, the mental counterpart of physical fatigue, presents as dopiness, grogginess, fuzzy thinking, forgetfulness, indecisiveness, impaired reading comprehension, inability to correlate facts, cutbacks in initiative and humor, mental confusion and lesser degrees of mental depression. It may occur intermittently, continue for long periods or may lead to more advanced depression and disturbed mentation. In the presence of individual susceptibility, test reactions to frequently encountered foods, drugs and environmental chemicals recapitulate restless legs-brainfag sequences in a time-compressed, convincing and diagnostic manner. Despite its common occurrence, this environmentally related illness is only rarely diagnosed and treated specifically.

Treatment Difficult for Some, but Rewarding

I highly recommend people with FM be tested for food and chemical sensitivities, or to do the investigation themselves. Share, Care and Prayer has articles on the Multiple Food Elimination Diet and The (Four-Day) Rotation Diet, as well as a Newcomer Packet of basic information for lifestyle changes. I fully realize that most people with FM and CFS are more inclined to look for medication, or surgery, for help rather than to have to change their diet or lifestyle. When I discussed this with one woman at a CFS Conference who could barely sit up and stay awake during the presentations, she told me "I will never give up my sugar." Thus, she may never get better. Theron Randolph, M.D. pointed out the very real difficulties of compliance to change in diet for very sick people in another paper, "Ecologic Orientation in Medicine," published in the January 1965 issue of Anals of Allergy:

As far as suggestion is concerned, chronically reacting patients are more apt to be negative to suggestion than acceptable to some new interpretation of their illness which might infringe upon their freedom. Even though a person may be intensely interested in learning the inciting causes of his symptoms, he is usually loath to accept an avoidance program as detailed as that associated with the elimination of corn, wheat, milk, egg or chemically contaminated foods, or as expensive as that entailed in the re-engineering of his home. Indeed, full acceptance of these cause-and-effect interpretations generally comes only after repeated demonstrations in which circumstances permit of no alternative interpretations.

Although the abstraction [idea] that chronic illness commonly results from daily exposures to which one is susceptible and maladapted may sound reasonable to the thinking person, the brain-fagged, confused, or depressed patient is apt to react negatively to such a suggestion. In fact, resistance to personal participation, even for a short period, is the major stumbling block to a wider dissemination of these views. Many patients are apt to be too tired to be attentive; too dull to grasp the continuity of what is said; too confused to read instructions comprehendingly; too embarrassed to ask questions and, most importantly, too stuck in their daily routines and too lacking in initiative to make any major changes. Such difficulties of instruction and acceptance of a program of action are compounded with advancement of the process. Too preoccupied with their own one-track recurring "thoughts" to comprehend, accept, decide or comply, it is easier to drift along than to make upsetting changes, even though such "upsets" might demonstrate [the] inciting causes of their illnesses.

However, those who will consider toxic chemical exposure resulting in sensitivity as a cause of their FM and act upon it, can get better. (See also the abstract for "A Novel Treatment for Fibromyalgia"...study elsewhere on this web site.) I shared information regarding food and chemical sensitivity having a bearing on FM symptoms, as well as an initial possible cause being exposure to Dursban, a widely used insecticide, with Bill Cook. We were attending the Christian Environmental Council meeting which was attended by over 90 Christian Environmental leaders. He had told me his wife had FM. I later sent him our Newcomer Packet which contains information on lifestyle change.

Months later, Bill wrote an article for his newsletter, It's Not Easy Being Green, in which he told of our meeting, the information they received and acted upon, and the subsequent health improvement for his wife. It turns out that Dursban had been used in their home against termites several times. Bill did his homework on Dursban and Multiple Chemical Sensitivity and shared much valuable information in his article. Here are some particulars he shared about his wife's progress:

Using daily logs and such [articles] supplied by Share, Care and Prayer, she's [his wife] beginning to recognize patterns in her symptoms, patterns that suggest cause and effect relationships such as those hypothesized by TILT ["toxicant-induced loss of tolerance"]. For example, she tends to feel better in the summer, perhaps because windows are open and the house is better ventilated. Also, in recent years she has developed strong reactions to any kind of synthetic fragrances (in perfume, lotions, soaps and shampoos). Plus, she thinks she notices distinct reactions after eating certain foods treated with preservatives or raised using herbicides and pesticides. For example, she gets a strange dizzy feeling after eating grapefruit raised in conventional orchards, but not when she eats organic grapefruit. She's also begun to talk with others about her FM, and has encountered intriguing coincidences. For one thing, often when she meets other women who have FM they admit to living in homes that were treated with Dursban.

It was so refreshing for me to learn that Bill and his wife had been open and willing to try something new, and then to report on their good results in his newsletter.

Food and Chemical Sensitive Veterans

While this article has been primarily directed toward people suffering from FM who had not heard of or considered they may have become food or chemical sensitive, I also want to address people who may be veterans in the world of Environmental Medicine. Not everyone with sensitivities has pain symptoms. However, some who have been on a food allergy diet and avoiding everyday chemical exposures may later begin to develop a pain (or CFS) syndrome. And, they (veteran E.I.'s), too, do not consider it may be caused by sensitivity to something.

In my experience with thousands of sensitive people:

I find that a large percentage of them do not consider pain as an allergy symptom.

Sometimes, as chemical and food sensitive people get better, they get lazy (and foolish) and begin to add back sugars or foods to which they were previously tested to be allergic.

They truly may be perplexed at the return of symptoms and pain, or they may deny that the problem may be allergy because they do not want to discipline themselves again.

Sometimes they become sensitive to a food(s) that they eat regularly which had not been a problem before.

OFTEN, they begin to take supplements for certain reasons and have no clue that those supplements could cause ANY symptom much less pain. All supplements are made from foods, yeast (mold) or chemicals. For those developing a pain syndrome, consider the timing of the pain in regards to the timing of taking a new supplement, medicine or food. Try going off the most recent supplement, food or medicine for awhile to see if the pain is alleviated. Keep a diary of meals, supplements, symptoms, etc. Some people may have to stop all supplements for awhile. If the pain is alleviated, then add one supplement back a week and watch for recurring pain.

Must be Tested to Know the Truth

There have been several patient survey questionnaire studies which report an overlap between patients with Multiple Chemical Sensitivity, Chronic Fatigue Syndrome and Fibromyalgia because these conditions share many of the same symptoms. However, there is a major flaw in the way the studies are conducted. Patients with Chronic Fatigue Syndrome and Fibromyalgia may be totally unaware that they are sensitive to anything. Therefore, their answers to questions regarding sensitivity would be invalid. I did not know I was severely food sensitive until I was tested. It was a complete surprise to me! All patients diagnosed with CFS and FM should be tested by:

intradermal or sublingual testing by an Environmental Medicine Physician, or

a RAST (blood test for immediate reactors) and an ELISA/ACT blood test (for delayed reactors), or

avoiding and challenging foods in their diet using tools such as The (Four-Day) Rotation Diet or the Multiple Food Elimination Diet and keeping a Diet/Symptom Diary, and

challenging their exposure to chemicals used in cosmetics, laundry and cleaning products, and other inhalants found in the home or outdoors by avoiding them for several days and then reintroduce them.

Resources

1. To locate an Environmental Medicine physician for testing, contact the:
American Academy of Environmental Medicine
6505 E. Central Suite 296
Wichita, KS 67206
316-684-5500

2. The blood test for delayed allergies (up to three weeks!) to foods, chemicals, molds, etc. can be ordered by any physician, and in some states by chiropractors. A blood draw kit will be furnished. The test is not covered by insurance and costs $595.00 for 307 items to be tested. For the results of a study of FM patients and delayed sensitivities by ELISA/ACT Biotechnologies (formerly Serammune Physicians Lab) see the Abstract for A Novel Treatment for Fibromyalgia Improves Clinical Outcomes in a Community-Based Study in another part of this section of our web site. Attention: The positive results of this test may be discounted because the patient perceives no problem with the food or chemical. And, items they may be aware they are sensitive to are not listed as positive. This is because this test reveals allergens from three hours after contact up to three weeks. It will not show items known to be allergens unless they are both immediate and delayed reactors. (Immediate reacting allergens may also be unknown due to chronic exposure to them.)

ELISA/ACT Biotechnologies, Inc.
2 Pidgeon Hill Drive, Suite 410
Sterling, VA 20165
800-553-5472

3. A blood test for both immediate and delayed reactions to 88 foods can also be done by a blood draw kit. Contact:

Genova Diagnostics (formerly Great Smokies Lab)
63 Zillicoa St.
Asheville, NC 28801
828-253-0621

4. Share, Care and Prayer offers free of charge the diets mentioned above and the papers "Ecologically Oriented Myalgia and Related Musculoskeletal Painful Syndromes" and "Environmental Incitants of Chest, Neck, and Shoulder Pains" written by Dr. Randolph. We also sell his book An Alternative Approach to Allergy for $16.00 plus $2.23 for shipping. (California residents, please add sales tax.)

Please take the time to read the short true life story "A Tale of Two Sisters with Fibromyalgia" presented in this section of our web site. It should give you hope and a new direction to pursue in order to improve your health.

May God guide you to a correct diagnosis and healing of your symptoms.

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