Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome

Read an Excerpt

Alternative Treatments for Fibromyalgia & Chronic Fatigue Syndrome

Hunter House Inc., Publishers

Chapter One

As individuals, we experience life in all different dimensions, so we really want to treat each individual as a whole person, not just an arm or a leg or a tender point. -Dennis C. Turk, Ph.D. Director of the University of Washington Fibromyalgia Research Center

* Mari's Story

In every book, there's a story behind the story-this one is no exception. When I think back, 1993 was a good news/bad news kind of year for me. I had finally found a job I loved, working as a florist and shop manager in the thriving Seattle neighborhood of Queen Anne. My partner and I had bought our first house that spring, and we were excited to be creating a real home for ourselves, starting a bigger pet family, and beginning work on our garden.

The bad news: An old foot injury had returned-now both my feet hurt constantly, and the pain wasn't going away. In fact, it was getting worse. My feet were swollen and tingling, and there was stabbing pain that seemed to get worse the longer I stood, especially if I stood in one place for more than a fewminutes. That's a real problem when you're working as a florist. I went to the doctor and then got a second opinion and another. Early on I was told that I had sprained my foot, or that I had gout, or maybe a stress fracture. Eventually I was diagnosed with tarsal tunnel syndrome by a podiatrist.

Time passed and I found myself living with constant pain. After several years of this agony, surgery seemed an option to consider. Back then, surgery for tarsal tunnel syndrome was considered by many to be a "cure," but like carpal tunnel surgery it didn't always bring complete relief.

Within the year, I underwent the surgery, but the pain in my feet never resolved. This pattern is typical of many people with FM and CFS who undergo unnecessary surgeries out of desperation, chasing the pain. I could not afford to take more than one month off, and soon returned to my job, where I was on my feet for eight hours a day.

Gradually I developed other symptoms. I became overcome with profound fatigue and there was pain in my back, hips, and knees. I felt frantic-I wanted to know what was happening to me. I had headaches every day. I wanted to sleep all the time, but I didn't feel refreshed when I woke up in the morning. With the mortgage to think about, it was an awful time to quit working, especially since I couldn't predict when I might be able to work again. But finally I made the decision to leave my job. I felt very scared about the future and isolated because all my friends were working. When I told people I had to leave my job because my feet hurt, it sounded so trite.

About four months after leaving my job, I consulted another doctor. I was fed up with anti-inflammatories, constantly icing my feet in five-gallon buckets of ice water (which hurt), and elevating them every moment I could. Amazingly, the new doctor was a colleague of a rheumatologist who specialized in fibromyalgia. I will never forget the day when I met the rheumatologist and was diagnosed with fibromyalgia. It began to sink in that this whole ordeal wasn't just the inability to heal after surgery, and it hadn't happened because I was a little out of shape. Most likely the stress of living with pain for so many years, coupled with my predisposition to FM, had brought me to this point. The diagnosis changed my life; I was a different person after hearing the words, "You have fibromyalgia."

Just a few months after getting the news that I had FM, I was diagnosed with CFS.

As tough as this was, I believe I had a little luck on my side. My good fortune was being diagnosed after just a few years and after only a couple of doctors, because I soon found out that many people with FM or CFS see as many as ten doctors (or more) over a decade (or longer) before being diagnosed. It was around this time that I read the amazing book Running on Empty by Katrina Berne. I could see myself in that book; at that point I realized I was not alone.

Aside from the pain and fatigue of FM and CFS, and all of the other symptoms that range from nagging to excruciating, it was the loss of my everyday life that I grieved the most. No more 12-hour workdays, no more spontaneous walks with my dogs, in fact, no more spontaneity.

It took me a few years to learn the steps I needed to cope with FM and CFS, which is what this book is all about:

* A great team of doctors and practitioners * A pain-management program * Healthy food * Good friends for support * Regular exercise * Learning to pace one's self in all aspects of life

These approaches can help immensely. Once these habits become engrained in your life, when you have a flare-up you'll still have your life skills to support you through it.

In 1998, I began work on my first book (the first edition of this book). Writing about FM and CFS helped me to accept my new life. Just knowing there were people like me, ready and willing to talk about their illnesses for the benefit of others, was a gratifying and humbling experience.

I found the contributors locally through word of mouth and doctors' offices. I interviewed them over the phone, had the tapes transcribed, and began the process of writing and rewriting until all the stories and factual information gelled into chapters.

For my second book, Women Living with Fibromyalgia, I found contributors over the Internet with the help of ProHealth. This time, I chatted with patients from all over the United States and even from Australia! I then worked with my friend, writer/editor Elaine Dondoyano, to condense the stories and make them easy to read.

Because I have FM and CFS too, I had to make it physically possible to write comfortably. That meant having moveable writing stations all over the house. I needed areas where I could stand and write or sit and write. It was necessary to physically cut up contributors' stories into piles marked "pain" or "doctors" or "tips" and put them in order. Since I write in longhand, everything has to be typed for me. This is necessary because if I use a computer, I can't see what has already been typed, and I may get confused and forget what comes next. So to keep that from happening, I hung the pages of the chapters around the walls of my living room. It took an entire day to put them in order, but it was worth it! I'm sharing these writing tips and tricks with you to show you that, no matter what chronic illness you may have, you can always find a way to work around a problem and reach your goal.

Just before the end of 2004, I spoke with a writer who was beginning a book on FM. She asked me about my books and wanted advice on getting her own book published. After chatting with her I realized, "Hey wait! There is more I'd like to say!" Around the same time, my friend Diane Kerner sent me a manuscript to read. It was her first book, My Own Medicine: The Process of Recovery from Chronic Illness-a terrific book, focusing on her recovery from CFS. The more I read through it, the more excited I became about rewriting Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome and continuing our story together.

I was enthusiastic to do the book, but knew I needed a writing partner for such a big project. After all the hard work and success of Women Living with Fibromyalgia, I knew that to really bring Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome up to date with all the new information available and even new contributors, I'd need a very special writing partner indeed. This person had to be understanding of my limits, a very quick study of all things FM and CFS, and a hardworking, easygoing, organized person, who didn't mind doing all the typing and who could put up with my brain fog and fatigue. After months of searching, my ideal writing partner moved in across the street!

Our cats met first. Helen's big, fat, orange cat Harry met my big, fat, orange cat Sunny, and a friendship, or at least a truce, was struck. "You have this half of the street up to the old rhododendron; I'll have the other half." Between us we have eight cats. Is that too many? Nah, cats are like shoes; you need them in a lot of colors.

Helen and her husband Rich both work for local television stations, and to my great luck, Helen is also a writer. We became fast friends and discovered that working together is a pleasure. The commute to work on the book took about 50 steps, and the traffic on our sleepy street is made up of cats and children.

* The New Book

So much has changed in the world of fibromyalgia (FM) and chronic fatigue syndrome (CFS) since the first edition of this book was published. We wanted to pull all this new information together and present it in a format that would be easy to read, and easy to use. We were also curious to see how our original respondents were faring seven years later-to catch up with the FM and CFS patients whose wisdom filled the pages of the first edition.

This time, we have the input of an international group of patients. Now that FM and CFS are recognized as real illnesses in the news media worldwide, it was not difficult to find people ready to talk openly about their illness.

In January 2005, with the help of immunesupport.com, arthritis.org, the Seattle FM and CFS Support Group, and the Eastside FM and CFS Support Group, we put out a request for patients to contact us if they were interested in telling their stories. Within a week we were buried under a virtual pile of e-mails from all over the world. We heard from more than 200 people-all with frank, honest insights into their illness and plenty of tips to share.

Reading the patients' stories was by the far the best part of writing this book. We received so many that we finally had to say "stop!" or we would still have our noses buried in the computer today!

Most patients told us they turned to alternative therapies, after first struggling to get help with their symptoms using conventional medicine alone. Those who get better-and there really are people who recover from FM and CFS-all seem to be on a similar path. Once they fully understood their illness, they added alternative and complementary treatments. When they cleaned up their diet, began exercising properly, and found a pain-management plan, many patients reported that they began to see positive results.

The American College of Rheumatology states that approximately seven million people in the United States have been diagnosed with FM and/or CFS. The majority of these people are women aged 30-45 years. Women are seven times more likely than men to be diagnosed with FM and CFS, but this does not necessarily mean that women are more susceptible to these illnesses. Many of the practitioners we talked with told us that men seem reluctant to report the symptoms of FM and CFS to their doctor, and therefore receive the diagnosis less frequently. Our respondents were a microcosm of the FM and CFS population, overwhelmingly women between the ages of 30 and 45, but also many men, people over 60, and college students. FM and CFS can strike anyone, at any time of life.

* Sound Advice

We sought experts in the field of FM and CFS and experienced practitioners of alternative therapies. They brought their knowledge, integrity, and enthusiasm to this project, because they believe, as we do, that you have the power and ability to live well with FM and CFS.

* How to Use This Book

In this book, we take a holistic view of medicine; we look at how to treat the whole person-body, mind, and spirit. You'll find many therapies to choose from, so you can gain a sense of what works for you and begin to build your own individual treatment plan. We can't wait to try some of the treatments in this book ourselves.

If you want to learn more about a particular treatment, turn to our Resources section for information on organizations, websites, and publications. It's organized by topic and is easy to navigate. You'll also find a bibliography, which lists every book and article we mention, plus books written by our featured providers (and some patients too).

Talk to your primary-care physician if you would like to try some of these alternative treatments. You may want to take this book with you to your next appointment and share some of the information you have found with your doctor. Feel free to scribble notes on all the pages.

Sharing this book with your family and friends is a great way to help your loved ones make sense of your illness. Reading others' stories and experiences may help them to understand what is happening to their loved one-you.

* * *

We look forward to writing other books and articles. If you would like to e-mail us (and perhaps send us your answers to our questionnaire), please do so at fmcfsbook@yahoo.com-we would love to hear your story.

We thank you for your support over the years, especially since the release of Women Living with Fibromyalgia in 2002. Remember, you are never alone in the fight against FM and CFS-we wish you good luck and hope you enjoy meeting these amazing people as much as we have.

Many of our respondents told us they found it cathartic to really think about the way in which FM and CFS has impacted their lives. You may find it helpful to complete a questionnaire yourself.

* The Questionnaire

DIAGNOSIS

1. When were you first diagnosed? What made you see a doctor?

2. How long do you think you had FM and/or CFS before you were diagnosed?

3. How long did it take you to get a final diagnosis of FM and/or CFS? Along the way, were you treated with respect, and did medical professionals take your symptoms seriously?

4. Prior to your illness, were you exposed to chemicals or pesticides? Did you experience trauma (either physical or mental), surgeries, or viral illnesses?

5. Do you have any other illness or condition commonly associated with FM and/or CFS? For example:

- Temporomandibular joint dysfunction (TMJ)

- Irritable bowel syndrome (IBS)

- Celiac disease

- Thyroid disorder

- Multiple chemical sensitivities (MCS)

6. How did you feel when you were first told you had FM and/or CFS?

7. How does your life now compare to your life before FM and/or CFS?

TREATMENT

8. Do you take medications and/or supplements for FM and/or CFS? If so, what kind do you take and do they help?

9. Have you tried any of the following therapies to relieve your symptoms of FM and/or CFS?

- Acupuncture

- Osteopathy

- Physical therapy

- Movement therapy

- Exercise

- Qigong

- Chiropractic

- Naturopathy

- Yoga

- Massage

- Tai chi

- Craniosacral therapy

Tell us about your experiences with these therapies. Did they help? What about them works best for you? What didn't help?

10. Whom do you rely upon most for your primary care? How did you find this person, and are you happy with the service they provide?

11. If you have been diagnosed with CFS, what are your thoughts on the name of your illness? Does "chronic fatigue syndrome" accurately describe it? The term "Myalgic Encephalomyelitis" (ME) is commonly used in some countries, and the term "Chronic Fatigue and Immune Dysfunction Syndrome" (CFIDS) has also been suggested as an alternative. Do either of these terms better describe CFS to you? Do you have another suggestion?

(Continues...)

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Excerpted from Alternative Treatments for Fibromyalgia & Chronic Fatigue Syndrome by Mari Skelly Helen Walker Copyright © 2007 by Mari Skelly and Helen Walker. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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