FIBROMYALGIA: What Doctors Don’t Know or Tell Patients

In the case of fibromyalgic people, the list of pills grows longer as the disease progresses – and if the pills don’t kill you – the die-et will!

One of the most devastating diseases in the United States today is known as Fibromyalgia. I’ve not seen any statistics on how many cases there are, perhaps no one is counting. What has been counted is that prescription drugs, in one way or another, are the fourth leading cause of death in the United States, and most of us know that a medical practitioner’s “answer” to any ailment is to prescribe a pill. In the case of fibromyalgic people, the list of pills grows longer as the disease progresses.

Fibromyalgia is associated with sleep disorder, and insufficient sleep or “restless” sleep only exacerbates the disease. For years, doctors considered it a psychosomatic (imaginary) disorder resulting from misuse of muscles, tension, depression or a dozen other things, but Fibromyalgia itself was discounted as just a name for a tub full of psychosomatic ailments ranging from unhappy childhood to unhappy marriage to insufficient exercise and a lousy outlook on life.

Before you ask, no I am not a medical practitioner of any sort, I have no vested interest in this subject except to help people who are not getting relief (but getting worse) from a variety of dangerous drugs prescribed to relieve the symptoms that feed off each other as the disease progresses. And no, I do not have Fibromyalgia. My friend Ginger has it. I’ve watched as it went from a rather mild case to the point, a couple of months ago, where she actually believed she would be unable to work much longer. Getting disability from Social Security for Fibromyalgia is nearly impossible. It can be done, but only after it has fairly well destroyed a person’s total health, their will to live and their finances. Small help when the dam has broken.

And no, I did not “invent” a cure, there is no cure. I didn’t even discover the help for Fibromyalgia that is given in this article. A netfriend who is a registered nurse suffered with it until she, like Ginger, had come to the end of her rope. Both of these ladies are over 50, they need to work, and they were both at the point where continued work seemed impossible. Both have homes and automobiles they could have lost and found themselves out in the street, figuratively if not literally.

The week prior to Memorial Day 2003 I was in a phone conversation with Ginger where she said she would just as soon the Lord take her home as to go on with a life of intense suffering and increasing expenses. She had become a zombie, pilled up at night to get at best fitful sleep, and “hung over” in the morning from the after effects of the pills as she showered and tried to push herself through one more day’s work.

In the meantime, my nurse friend had told me of her incredible improvement and how it came about. Ginger is not one to listen to me unless she is at the end of her rope, hope and means. I sensed that the time had come during the week before the Memorial Day holiday, when she would have three consecutive days off, to spring this information on her.

I said .. “Ginger, you must become gluten-free. I want you to try it because at this point you are trying pills you cannot afford for relief you are not getting.” She said she did not know how to begin, and I volunteered to go out and bring what she needed, mostly from Trader Joe’s at that point, and so out I went for an unplanned three-day holiday. The idea of giving up bread, bagels, doughnuts, pasta and pizza was almost too much for her. Pain or relief? Okay. She chose to try the gluten-free diet and see if it would give her relief. I must say, she had her doubts and misgivings as well as near hysteria over the thought of never again being able to eat Krispy Kremes.

“You can eat bread, it just has to be gluten-free bread” was my reply, and in the load of stuff I brought out was a loaf of rice bread sweetened with fruit juice. We even ate breakfast out, but she was restricted to scrambled eggs, fruit, cottage cheese and potatoes if she wanted them. By Sunday she thought she might be feeling a little better, was not sure, but she said she would continue the diet. I came home on Monday, Memorial Day, before the traffic turned our freeway system into one big parking lot.

Ginger kept her word, but Tuesday she stopped by a Chinese restaurant to get rice, vegetables and fried chicken for her dinner. At that early stage, she was still too tired to cook her dinner (something I’ve done when I’m out there visiting). There had to be a light wheat flour breading on the chicken, not noticeable like the half-inch thick gunk on KFC chicken. And it reacted immediately. She called me in near panic and said she felt sick all over, not like food poisoning but like something awful had come upon her. It was my suggestion that she drink a lot of water and just relax, she was having a mild reaction but things would be okay. She asked if I could come out and stay two weeks and help “jump start” her on a total program. I agreed to come out but with the proviso that I needed to come back to Sun City every couple or three days to check my mail and my condo. It wasn’t going to take any two weeks, but that wasn’t the time to explain it.

On Thursday, May 29, 2003 I went back out to her place with another load of organics and other good stuff from Trader Joe’s (and no, I don’t work for them either, they’re just the closest to me of the various organic food purveyors in this area including Wild Oats on her side of town).

She volunteered to get off coffee and we substituted hot green tea sweetened with organic sugar. I fixed dinner in which rice was substituted for bread. Potatoes can be substituted also if the meal is better with ‘taters. Large romaine and spinach salads were served with the cooked dinner. One of her favorite foods I fix is something I call a “fried meat loaf patty” and I do all my frying in olive oil. Olive oil has so many benefits it’s impossible to name them all here.

After dinner, she said she never wanted to eat another drop of anything with gluten, food additives or preservatives in it. By Sunday, June 1, she had the strength to drive out here to Sun City, so I could get my mail and she could shop at TJ’s also, where she selected a large piece of fresh salmon and announced she was going to fix my dinner for a change. That is how fast the gluten-free diet was working. She brought home $47 worth of fresh meats, salads, gluten-free breads and cereals, fresh pineapple wedges, juices and even frozen juice on a stick to substitute for her diet-popsicles. I could see she meant business. By Tuesday, June 3, I was able to come home, confident that my friend was never going to fall off this diet.

By Saturday, June 7, she and another friend were able to go on errands, shop for other things she needed besides groceries (her kitchen was well-stocked with gluten-free foods and fresh produce). She found additional gluten-free products at a health food store where she gets her vitamins. Ginger had not been able to leave her home for about two years on a Saturday. She was ecstatic about getting well, going out and about, and beginning to have a life again.

In the meantime, she had made an initial appointment with my rheumatologist, had gone through comprehensive blood tests, and when she returned to the doctor’s office, her improvement was noticeable. The doctor commented that there was no sign of rheumatoid in her blood. In fact, there was nothing remarkable in her blood tests at all.

Then she unloaded the gluten-free therapy on him and he just looked at her. I know that “blank look” very well. Of all the rheumatologists I have visited in the ten years since the fall that fractured my back, this is the best one of the lot, and apparently he had never heard that Fibromyalgia is often exacerbated to the extreme simply by continuing to eat gluten-containing products, and then taking what I call “additional systemic poisons” in the form of several types of pills for pain, sleep, muscle relaxation and rheumatoid-like symptoms. Fibromyalgia is the ailment that used to be called “rheumatism of the muscles.” My friend has spent a fortune on pills and untold hours in pain, all because the United States medical profession will not acknowledge that our foods may be the source of our illnesses or study the relationship between food and illness. Other countries do.

If the stats are correct and prescription medications are the fourth leading cause of death in the US, it would seem like the doctors would want to know more about food allergens rather than the newest pain pills, but they don’t. American medicine is pill-based, to the detriment of the population’s health. It is now possible to see why other nations may be afraid of grains grown in the United States. I don’t know what we do to them, but we possibly genetically alter them, use chemicals to “naturally” keep away bugs, we use insecticides, bleaches and “enriching” substances to put back in what the processing takes out.

Ginger has learned in a hurry to read labels also. In the case of foods, labeling is good. She is able to avoid any food with properties that she doesn’t want, and to get fresh fish, meats and organically-grown vegetables, meats that are free of hormones, and dairy products from animals that are not fed with hormones and various growth stimulants.

I checked with another netfriend and he only confirmed the gluten association with Fibromyalgia, which he has had to a severe extent. His case is also exacerbated by weather and he and his wife are moving June 27th to Guanajuato, Mexico, where they visited for two weeks in February. In addition to taking up the “food therapy” he needs climate therapy. Phoenix, despite the fact that the winter weather is wonderful, is an unhealthy place to live now simply because 3.1 million people live here for pain relief of some kind, enduring the horrible heat in summer.

How many Fibromyalgia sufferers will read this, I do not know, but it is well worth the time and effort to tell this story because it involves two netfriends who were aware of the gluten association, and a direct experience with my having put it to the test on my own friend with astonishing success.

Yes, a Fibromyalgia sufferer has to give up some goodies, one of them being the kind of bread we’ve so long considered the “staff of life.” But they also give up an enormous amount of their pain and the incredible cost of pills to alleviate or try to alleviate the pain. For those who can take it (those not allergic to ragweed or its kinfolk) a cup of strongly-brewed chamomile tea is a tremendous relaxant when taken just before bedtime.

This gluten-association with Fibromyalgia cannot be too big a secret now or so many stores would not be featuring gluten-free foods. Still, it’s word-of-mouth information and many still haven’t heard of the gluten-free approach to treating and relieving the pain of Fibromyalgia. Even one of our regular supermarket chains (the only one that’s native to Phoenix metro) has now put in a very large section of organic foods, including potato flour and rice flour. It’s possible to make pancakes and waffles from these flours but I have very bad news for southern-fed folks (my mom and her folks were from Texas). Biscuits, plain or with gravy are out. Forever.

Now if this helps persons in pain, whether it’s one person or a bunch or hundreds, I’ve done my work by giving Ginger’s experience in this article for the benefit of Fibromyalgia sufferers who might read this online. I can only pray it helps some of you as much as it has my friend. It’s worth the try, all you can lose is your pain.

~ About the Author ~
Dorothy Anne Seese is a freelance political writer for Patch Work papers and a regular contributor for The Federal Observer. Miss Seese is retired after 25 years as a legal secretary/assistant and, prior to that, over 15 years as a business systems and procedures analyst. Her hobby is freelance writing. A native of Southern California, Dorothy A. Seese resides in Sun City, Arizona. She has spent most of the past 40 years living in the greater Phoenix metropolitan area and considers Arizona her home state. We invite you to visit her website at Flagship.

Originally published on DrKelley.info, June 16, 2003. Embedded links and contact information may no longer be active or valid. (Ed. 12.24.10)

FAIR USE NOTICE: This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of environmental, political, human rights, economic, democracy, scientific, and social justice issues, etc. We believe this constitutes a ‘fair use’ of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes. For more information go to: http://www.law.cornell.edu/uscode/17/107.shtml