WE NEED A HERO, Part 2

I was diagnosed with fibromyalgia about ten years ago. In looking back, I realize that many traits that didn’t seem to be related were all part of one syndrome. When I was in high school, I would have to lie down to rest after walking home from school. I was the only one who went back to my room to brush my teeth after lunch in college, and yet I was the one who needed frequent dental work. Wool was intolerably scratchy, and the tags on my clothes would raise welts on the back of my neck so I cut them out. Even with heated socks, my feet would go numb in 15 minutes in the snow. My husband called me “the princess,” because he was sure I would be able to detect a pea under 20 mattresses like the heroine of the fairytale.

The pain started with tendonitis and bursitis, first in one joint and then another. Sometimes I couldn’t turn my head to look behind me when driving, and I couldn’t lift my arms to more than shoulder height. Like most FMS sufferers, I went from doctor to doctor, and all repeated the same tests with the same lack of results. I was told to exercise, get massages, try acupuncture, take up yoga, get psychotherapy, and I was sent to a pain-management clinic. Even when I went to a doctor whose specialty was fibromyalgia, the first question he asked was about what traumatic event I had experienced at the time I started to have symptoms. (He didn’t ask IF there had been some traumatic event, but what it was.) I seldom get more than a few hours of sleep and usually wake up more exhausted than when I went to bed. As bad as all this sounds, I actually got off light compared to what others have described. I’ve managed to function reasonably well with the help of some supplements and a low-carb diet. As long as the pain kept moving from one body part to another, I accepted it as a nuisance, but not a “real” problem. Besides, there didn’t seem to be any alternative.

FMS/CF symptoms:
In addition to pain and fatigue, FMS patients report brittle nails, poor hair quality and hair loss, periodontal disease, frequent bladder infections, irritable bowel syndrome, genital pain, and sensitivity to light, noise, and odors. They have a narrow comfort range in temperature, and hot flashes and night sweats disrupt sleep. Rashes, acne, eczema, rosacea, and seborrhea are common. They can’t tolerate synthetic fabrics and some can wear only cotton. Many wear their underwear, socks, and pajamas inside out so the seams won’t hurt. They experience dizziness, frequent headaches, memory lapses, and mental confusion. They have allergy-like symptoms of the throat, nose, and eyes. Weight gain and carb cravings are common. According to a 2007 survey, the average female patient weighs 180 pounds and is 5’4” tall. Several of Dr. Kervokian’s suicide clients were said to have been suffering from FMS.

It was through an e-mail from a reader that I learned that there is a treatment that holds promise. Dr. R. Paul St. Amand is an endocrinologist in Los Angeles who has devoted more than 40 years to the treatment of fibromyalgia. He and his assistant, Claudia Marek, have written three books together and she has written a fourth that describe a protocol using a common, over-the-counter medication to reverse the disease. Dr. St. Amand’s protocol has been used by thousands of people, but you are not likely to learn about it except by word of mouth or through an Internet search.

Dr. St. Amand believes that FMS is caused by a genetic defect that results in an accumulation of phosphate in the cells that interferes with energy production. Since it involves every cell, the condition affects all parts of the body, and all the varied symptoms can be explained by this one defect. He has discovered that guaifenesin, usually used as an expectorant, can purge the excess phosphates and reverse the symptoms of the disease. The medication is a weak uricosuric agent, meaning that it causes the kidneys to eliminate uric acid. He contends that it also acts to remove phosphates. You can read about Dr. St. Amand’s protocol on the Fibromyalgia Treatment Website at: http://www.fibromyalgiatreatment.com/. An explanation of his hypothesis about how guaifenesin works is available at: Use of Uricosugic Agents in Fibromyalgia.

Although this protocol has not been endorsed by mainstream medicine and is actively disputed by some, he claims that his system works for 95% of the people who follow it. (A placebo effect could account for only a 30% positive response, so that eliminates that argument.)

To be continued: We Need a Hero, Part 3