A Patient Story

(Excerpt from the book).

Obtaining a diagnosis for FM or CFS can be a difficult journey. In the Diagnosis chapter, practitioners and patients explain how an accurate diagnosis of these syndromes is obtained. Included in this chapter are both technical perspectives from experts in the field, as well as personal anecdotes who have sought a diagnosis. Many people have had great difficulty in dealing with uninformed physicians, as the patients interviewed in the Diagnosis chapter reveal. One such person, Ann A., told us that she had numerous surgeries on various body parts to treat what later turned out to be FM. "Prior to my diagnosis," Ann said, "I had had several traumatic events in my life. I divorced, my mother died suddenly, and I broke up with my business partner of 10 years. Those stresses were part of bringing myself into the "acute" phase of FM. I think that a series of 'insults' to my body caused the FM. That's one theory of why we develop it. For some reason, some people have a genetic predisposition for it. We're not able to handle certain stresses. And when we experience them, they are the straw that breaks the camel's back."

"In hindsight," Ann said, "I know that the FM had probably been going on for about 10 years. I had had a long series of physical problems. When he gave me the diagnosis, my doctor told me I was lucky to not have lost any more parts of my body than I already had. Imagine, I had eight surgeries in eight years. In 1982, I had TMJ [temporomandibular joint disorder] surgery to realign my lower jaw. In 1984, I had a bunionectomy on my left foot to remove extra bone growth. I had so much pain prior to that surgery that I could barely find shoes to wear. In 1986, I had a bunionectomy on my right foot. In 1987, I had arthroscopic surgery on the TMJ. In 1988, I had a total hysterectomy, which I opted for when the painful menstrual cycles made me almost non-functional two weeks per month. In 1990, I had two bowel obstruction surgeries. The obstructions were scar tissue formed as a result of the endometriosis and the hysterectomy. That year, I had a second arthroscopic surgery on the TMJ.

"The multiple surgeries show how the doctors were 'chasing' the pain I felt in various parts of my body. That's characteristic of many doctors. When you're having pain, they either want to give you drugs or operate on you, because those are their only options when they don't know what's going on. If I could do it all over again, knowing what I now know, I would never go through all those surgeries. I thought that's what I had to do in order to feel better, but the surgeries actually made me worse.

"I experienced acute continuous FM symptoms for the next four years." Ann said. "In 1994, I received the diagnosis of FM and had to quit work. Soon after I was first diagnosed, I went into counseling. My counselor and I used the metaphor of severely pruning a tree. I had to cut back to the core, the utter essence. Being ill forces you to shift priorities and let go of what you used to think was important. But after every pruning, there is new growth. FM has forced me to adopt a different lifestyle, but I think it's a lifestyle that's much healthier than the way a lot of people live - sort of mindlessly. FM has distilled my life down to what's really important."

Go back Inside the Book

Copyright (c) 1999 Mari Skelly and Andrea Helm. From Alternative Treatments for Fibromyalgia and Chronic Fatigue Syndrome: Insights from Practitioners and Patients. Published by Hunter House Inc., Publishers, Alameda CA; excerpted by arrangement with Hunter House. No part of this text may be reproduced or transmitted in any form without the written permission of the publisher.