Hold Tightly to Your Hope...

Tuesday      June 17, 2003      Grand Junction Free Press      Page 10
(c) Copyright 2003, Marilyn MacGruder Barnewall, All Rights Reserved
Grammy's Axioms, Special to the Grand Junction Free Press

By Marilyn MacGruder Barnewall

Axiom: If you feel hopeless about a thing, it is, indeed, hopeless. To beat adversity, hold tightly to your hope. Without it, you have no dreams.
     It is amazing how important life’s principles become as we age. To learn what works and what doesn’t work in life, people go through a great deal of stress. Sometimes, trauma. There is glory and beauty, too. As we look back, we realize all of those things define our individual lives.
     All human beings can be assured of one thing: At some point in life, each will be tempted to lose hope. Many of us will .
     For me, the most recent temptation to lose hope came when I became disabled in 1993. I owned my own company and in the 1980s was one of the highest paid women in the U.S. I traveled the world, was called by major publications like Time and Wall Street Journal for my opinion about banking. I gave speeches in Zurich, London and Singapore. I loved my life. My kids were raised, success was within my grasp... and suddenly I had to walk away from it all. It hurt. Badly. It almost caused me to lose all hope for a happy life.
FIBROMYALGIA
     “Because your condition is more or less invisible, friends and family may not believe you when you say you hurt... you may be deprived of the normal support network that forms around a chronically ill person because ‘you look just fine.'” Some family members -- including my own children -- reacted just as Dr. Starlanyl predicted in the above paragraph.
      That statement by Devin Starlanyl, M.D., and Mary Ellen Copeland, M.S., M.A., in their book, Fibromyalgia & Chronic Myo-fascial Pain Syndrome (New Harbinger Publications, 1996) was, for me, an epiphany. I, who had been disgustingly healthy most of my life, had just been diagnosed with fibromyalgia. These words suddenly made clear the essence of a health problem.
     Though Dr. William Balfour at the University of Edinburgh identified the symptoms of FMS 200 years ago, the American Medical Association (AMA) until 1987 did not recognize FMS. Even today, many physicians view FMS as a "junk" disease. Unfortunately, a lot of physicians know so little about FMS, whenever a person has a lot of diverse symptoms and they do not know what is wrong, doctors tell patients they have fibromyalgia.
      The symptoms of FMS are diverse... and that is part of the problem. You get referred to a lot of specialists. There’s the neurologist, rheumatologist, orthopedist, surgeon, nephrologist or endocrinologist. They need to get together and say “Hey! We’ve got a classic case of fibromyalgia here! Look at these diverse symptoms!” But they usually do not.
     When you do get a correct diagnosis, you may find your way into a support group. They tend to support treating the symptoms, not the disease. Instead of a group, I found my way to Barnes & Noble where I found Dr. Starlanyl’s book and, through her, the medical expert in the country treating fibromyalgia.
     What are the diverse symptoms of FMS?
     You may be excessively nervous, depressed, or find your memory impaired. Muscle stiffness and tingling in extremities occur. You can have digestion, bladder and bowel problems – or, hot and itching palms of hands and soles of feet. Even painful intercourse, eye irritation and loss of hair quality may be symptoms of this disease. A recent study in Israel determined a large percentage of people with FMS also have thyroid disease.
     Sleep is impaired by various problems... the inability to breathe properly, the need to urinate often. Fatigue, lost concentration (fibrofog) and irritability when combined with pain are primary symptoms of FMS. Most of us have small lumps... they can’t be seen, but we can feel them under the skin.
     How many people are afflicted with this disorder and what causes it? A conservative estimate of the number of people with fibromyalgia is 20 million. It represents about 5 percent of the population, all ethnic groups, 85 percent of whom are women.
     In his recent book, What Your Doctor May Not Tell You About Fibromyalgia (Warner Books, 1999) Dr. R. Paul St. Amand states “Another twenty-five million people suffer from chronic fatigue syndrome, which I (and most other physicians) believe is the same disease” (as FMS).
     St. Amand also believes fibromyalgia is today’s prelude to tomorrow’s osteoarthritis “and that afflicts another thirty-five million people.”
     St. Amand teaches at UCLA’s Harbor Medical facility. His theory – and he emphasizes it is a theory – is that fibromyalgia is caused because some human bodies do not properly dispose of phosphates. When you read his entire explanation, it makes so much sense.
     His theory has been tested on a lot of people. In his private practice, he has for over 30 years specialized in treating more than 5,000 fibromyalgia patients. Some fibromyalgics, he says, “live with their symptoms for years, until they finally succumb to excruciating pain.” St. Amand points to phosphate abnormalities in the muscles of fibromyalgics which he postulates is due to a faulty enzyme at the kidney level. Most people’s kidneys eliminate phosphates easily. Not true if you have fibromyalgia.
     When this metabolic malfunction occurs, the blood needs to store the phosphates... get them out of the blood. Our efficient bodies find room for the phosphates first in the bones. When that space is gone, it is stored in muscles, intestines and, eventually, in joints. That accounts for the lumps and osteoarthritis.
THERE IS HOPE
     St. Amand has identified a very old and well-tested drug with no side effects to reverse the symptoms of FMS. Too few doctors know about it. As a result, too few people who suffer with this disease know about it. Instead, symptoms are treated... pills for sleep, pills for pain, pills for delaying trips to the bathroom, etc. And, almost all medications have side effects.
     The treatment is a little more complex than just taking a pill or two each day. Not much more complex, but a little. It takes a book, not an article, to explain the details. Once understood, the treatment is straightforward, causing little inconvenience.
     If you are one of the 40 percent of women who are hypoglycemic as well as fibromyalgic, you may have to change your diet a bit. Your cosmetics cannot contain salicylates – nothing you put on your skin can contain them because salicylates are absorbed through the skin. The same is true of toothpaste, mouthwash, soap, etc. Salicylates block the medication from doing its job.
     Though these things sound small and insignificant, they are key to succeeding in FMS reversal. I had to change a lot of my cosmetics... my toothpaste and mouth wash, my shampoo and rinse. And, I have to wear gloves when I garden. These are small prices to pay for pain relief! Since anti-inflammatories burned the lining of my stomach, I can’t take anything for pain. Not even an aspirin. Perhaps that is why the price seems so small for pain relief.
     Before people try St. Amand’s reversal treatment, they and their physicians need to be informed about how to find the proper medication level, what dietary changes need to be made, and what you can put on your skin and what you cannot.
     St. Amand generously provides the information to FMS patients and their physicians for the cost of a book and videotape. You can get the information free on the Internet. Download what needs to be done from his Website, www.guaidoc.com.
     Dr. Starlanyl’s book taught me that FMS causes the neurotransmitters in my body to get disrupted... more than once, I dropped a glass of water trying to bring it to my lips. It scared me to death because my dad died of Lou Gehrig’s Disease, ALS. In her book, Starlanyl uses the specific example of dropping a glass of water to explain neurotransmitter interruptions suffered by FMS patients.
     Dr. Starlanyl understands FMS because she has it. So, too, does Dr. St. Amand.
     I sent away for Dr. St. Amand’s videotape about FMS. I purchased his book. Thank God I got informed rather than joining a group that doled out sympathy (and approved of pills) for my pain.
     Today my symptoms are 50 percent improved over what they were less than a year ago. Because of Dr. St. Amand’s medical insights, I expect a complete reversal of the disease within a few years. It takes two months of the medication to reverse symptoms for each year of FMS symptoms.
     Fibromyalgia presents a complex (and painful) problem. You need information to help yourself.
     Go to Dr. St. Amand’s web site at www.treatfibromyalgia.com.
     Go to Dr. Starlanyl’s web site at www.sover.net/~devstar.
     There, at no cost, you will find in-depth explanations of what I’ve barely touched on in this article. Get informed. Get well!
     If you do not have a computer, go to the public library to access the web sites. If you’re computer illiterate, ask the librarian for help.
     My fondest hope is that one year from the date you read this article, you or a friend or a loved one will say “My symptoms are 50 percent better than they were last year!” Hold tightly to your hopes. Being hopeful rather than hopeless sometimes requires us to take responsibility for ourselves in ways we hadn’t anticipated. Do you suppose that is part of the meaning of : “Physician, heal thyself”?