Part 1

What Your Doctor May Not Tell You About Fibromyalgia : The Revolutionary Treatment That Can Reverse The Disease
By R. Paul St. Amand, M.D., Claudia Craig Marek, M.A.

(Page 2 of 4)

Chapter 1

An Invitation to Join Us and Find Your Way Back to Health

Having fibromyalgia means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about (this illness) and its effects, and of those that think they know, many are actually misinformed.

- J. M., Texas

It can start off quite subtly: a bit of muscle pain, along with some generalized aches and stiffness. Then there are periods when concentration is impossible, a day or two of overwhelming fatigue, and maybe a little dizziness, cramps, and diarrhea. Symptoms come and go at first, and it's easy to chalk them up to a mild case of flu that never quite localizes, to overexertion and too much stress in your life.

Then, one day, you realize it hasn't gone away - it never goes away anymore. One part or another of your body always hurts. You feel stressed and irritable all of the time. You wake up tired every morning. In short, you haven't felt “right” in a long time. The symptoms begin to worsen, and you notice new ones. Perhaps depression, numbness and tingling of the hands, leg cramps, stiffness, headaches, or bladder infections. Often you can no longer sleep through the night. Sometimes it's pain that keeps you awake; sometimes you don't know what it is that keeps you from falling asleep. When you do sleep, you wake up tired and unrefreshed. You crave sugar or other carbohydrates, and if you give in to this craving, you tend to gain weight and feel even worse. Then, before you know it, bad days outweigh the good ones, and eventually there are no good days, just ones that range from bad to worse.

It feels like coming down with the flu, yet it never manifests fully. It's like being fluish, achy and tired, and embarrassed and discouraged about it because you don't know why or what you can do to make it better or what you did to make it worse. Everyone gives advice but they don't have a clue as to what it's really like. Having people tell you to eat differently and exercise more and not focus on your health makes you just want to isolate yourself because you've already experimented with every possible food plan, supplement, and idea.

- Miki K., Hawaii

You become increasingly immobile. Gradually and without realizing it at first, you stop making plans because you never know how you will feel, and you become mostly housebound or bedridden. The simple task of going to the supermarket can be an impossible chore. By now you have visited doctors of various specialties in the hope that one of them will be able to tell you what's wrong and set things right. When the pain is bad, you seek out chiropractors and massage therapists, and maybe you try acupuncture and alternative treatments like herbs or homeopathy. You have had many diagnostic tests run, costing hundreds, perhaps even thousands of dollars. Your friends have offered you a lot of advice about vitamins and nutritional supplements that have helped them or someone they know. But you are already taking a regimen of vitamins, minerals, and enzymes, and you do not feel much better. You may have heard the word “fibromyalgia,” and maybe you know whether or not you have it. No one has told you how to treat your disease, although they have many ideas about how to ease your symptoms.

Your life has entered a downward spiral of pain, depression, and fatigue. You have a great deal of guilt about not being the person you used to be. Unless you are blessed with an exceptional companion, your personal relationships have suffered or completely fallen apart. You worry about your ability to care for your children. You may even contemplate suicide.

It feels like everyone around me is normal and happy and having a good time and I'm so different. I want to have a few normal days. I don't fit in anywhere because no one understands. People laugh and say “You look fine” but I'm dying inside and I can't explain it to them. I'm so tired of pretending I'm okay when I want to scream. I have kept a positive attitude for so long but it's exhausting and I just can't do it anymore. I wish I could just go away somewhere and hide.

- Susie

This is an oversimplified picture of what it's like to have fibromyalgia. Those of you who have it know that it is far more involved than this. I know what you're going through. I am intimately familiar with the personal struggles that each and every one of you has experienced with this illness either as sufferers or as their supporters. I have lived with your pain, your fatigue, and your despair.

I have spent my entire medical career treating patients with symptoms such as these and more. Headaches, jaw and facial pain, abdominal discomfort, dizziness, memory lapses, vulvar and bladder pain, itching and rashes, all plague fibromyalgics. Until recently, doctors told patients like you that your illness was due to “nerves.” And, to underscore this diagnosis, patients were reminded that the pages and pages of tests run on them had shown “nothing wrong.”

Fibromyalgia is prevalent in all ethnic groups in all parts of the world. In North America, it is estimated that about five percent of the adult population suffers from this disease, although I believe the actual rate is higher. Conservatively then, some twenty million Americans suffer from fibromyalgia and its related disorders - most are women, with the ratio of women to men at about five to one. There is some evidence, mostly anecdotal, that this statistic may be skewed due to the fact that men are often either misdiagnosed or less likely to visit a doctor. Rheumatologists say fibromyalgia is the most common disorder they see.

Another twenty-five million people suffer from chronic fatigue syndrome, which I (and most other physicians) believe is the same disease. I have good reasons to conclude through my work that today's fibromyalgia is the prelude to tomorrow's osteoarthritis that afflicts another thirty-five million people. Adding these numbers would suggest that one third of our population will suffer with some of the symptoms of fibromyalgia at some point in their lives. And this does not include those who have been diagnosed with other “syndromes,” such as myofascial pain, chronic candidiasis, vulvar pain, irritable bowel and irritable bladder, and so on - who in all probability have fibromyalgia as well.

My rheumatologist told me I was too old to have FMS. At that time I was fifty-four, never mind the fact I had had symptoms most of my life. The disease had become “full blown” when I was about fifty-one. . . . After another year of suffering, I diagnosed myself via the Net. My DO (Doctor of Osteopathy) sent me back to the same rheumatologist because he is the only board-certified one in our area. At that time he told me I was too old to have FMS but even if I did there was nothing that could be done. . . . I have since been diagnosed with FMS by three other doctors, all of whom have told me the only thing they could do was treat my symptoms. I was as good as I would ever be and would get much worse.

- Betty, Texas

About the Author

R. PAUL ST. AMAND, M.D., is a graduate of Tufts University School of Medicine. He has been on the teaching staff at the Los Angeles Harbor/UCLA Hospital, Department of Endocrinology for over forty-three years. He is currently an assistant clinical professor at the UCLA School of Medicine. Dr. St. Amand discovered guaifenesins use as a treatment for fibromyalgia, and his work is cited wherever the substance is mentioned.

CLAUDIA CRAIG MAREK, M.A., is a medical researcher tutored, trained, and taught on the job as Dr. St. Amand's assistant. She has co-written medical papers with Dr. St. Amand and has counseled fibromyalgia patients on the use of guaifenesin for the past seven years. She, too, is a former fibromyalgia patient, and is a leading patient advocate.