Letters From You – 08-30-06

Subject: Need for information on adolescents with FM
As a mother of a recently diagnosed 14-year-old daughter with Fibromyalgia, I am finding it very difficult to compile information on adolescents with FM. After two years of misdiagnosis and fighting doctors who didn't believe her, our pediatrician finally contacted Lucile Packard Children’s Hospital at Stanford University. The children’s pain clinic there was able to diagnose her condition and we have started her on aqua therapy. Though we also want to supplement her with healthy alternatives such as magnesium, zinc, calcium, etc. We have found almost nothing to suggest alternative treatments for our youth. According to our treating doctor, FMS is under-diagnosed in children.

As a family we would appreciate it if you could provide more information for families with children who have FM, or at least tell us where we can get information and help.
Thank you, Concerned Mother

Note to readers: For more information about the Lucile Packard Children’s Hospital Pain Management Clinic, go to http://www.lpch.org/clinicalSpecialtiesServices/ClinicalSpecialties/PainManagement/painManagementClinic.html

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Subject: Sharing and discussing new information with doctors
… As a nurse, and someone who suffers from FM, I have learned more from your site/newletters than any other site I have looked at…and that would be A LOT. I e-mail articles from your newsletter to friends and doctors on a regular basis. When I go to my doctor I always bring a stack of articles for him to read and for us to discuss. Keep up the good work.
Respectfully, M

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Subject: One reader’s path to controlling FM pain with dietary changes
I was referred to a qualified dietitian by my doctor, both of whom work at the Chronic Pain Center that's part of the provincial healthcare system where I live in Canada. After being on an "elimination diet" (eat only certain foods) for two weeks, my pain level dropped significantly, and my energy and sense of well being blossomed. Then, by adding certain foods back into my diet, the dietitian determined the particular foods, or food additives, that produce a sensitivity reaction in me. The reactions I experienced, depending on the particular "test food" eaten, were extreme heartburn, itching, and swollen hive-like, and zit-like sores on my scalp. The results suggested that I'm sensitive to wheat, and wheat gluten, histamine, benzoates and its derivatives, sulfates, sulfites, nitrates, and nitrites.

By avoiding foods and products that contain those compounds, overall, the pain I experience, on a scale of 1 to 10, is reduced from a level around 5 to a level near 1. With the reduction in pain, I have more energy, and feel so well that it's worth the time and effort it takes to avoid the foods and products that contain those compounds.

As you probably know, not only are most breads and desserts made with wheat, but wheat or wheat gluten is present in numerous other foods as a thickener or binder. It is my understanding that the level of histamine in food increases during the decomposition process, meaning that if I consume refrigerated leftovers, the level of histamine increases in my body. Benzoates may be added as a preservative to various foods, cosmetics, and pharmaceutical products, both prescription and over-the-counter. Nitrates, and the other "ates" and "ites" mentioned may be present in many processed foods. Therefore, it is quite a challenge to eat healthy and avoid the items I'm sensitive to.

However, when I over-consume those foods and products, I can relate an increase in pain to an increased consumption of what I need to avoid. When I get back to the "right stuff," within a couple of days the pain decreases and I feel so much better.

The comments above are strictly my own experience. In no way am I a qualified practitioner of any kind, and in no way am I suggesting that anyone change their diet based on my account. I'm simply reporting what I experience by changing my diet. Yours truly, J.

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Subject: Constructive criticism from a support group leader [excerpted]
First, let me compliment you on the wide range of subject matter and quantity of articles that appear on your Web site and through your e-mail newsletter. I'm a Fibromyalgia support group leader as well as a patient who has suffered from FMS for many years. Fortunately, I learned to manage my medical condition using a combination of prescription drugs, diet, exercise, behavioral therapies and lifestyle changes. Continuing self-education over the years has been the most significant factor in realizing lasting improvement in symptoms…especially these last couple years. The more I've learned, the more I've been able to implement real change in my life. I still have FMS, but it no longer dominates my life. I'm in control of my symptoms and thus, my health.

Unfortunately, as a support group leader, there are a few concerns I have with the information on your site…. I do appreciate that readers have to use their minds to separate the "wheat from the chaff" in accepting or rejecting what is presented to them as "fact." However, many FMS patients have a difficult time sifting through the complicated and voluminous offerings from many sources and come to depend on organizations such as yours to assist them in this task. When I see things like your "Product Spotlight" pushing remedies like Guaifenesin FA… I grow ever more frustrated.

I do realize that you do point out in the "FM Research Update" article on guaifenesin [in the August 16, 2006 FM newsletter] that "So far the Guaifenesin Protocol has not been demonstrated effective in a controlled clinical trial, or approved by the FDA for support of Fibromyalgia symptoms." Nonetheless, the product takes center stage via the ads and implied endorsements and the real truth is "hidden" but to those who take the time and effort to carefully read nearly the entire article…
Regards, Support Group Leader

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