Taming Chronic Pain: A Management Guide for a More Enjoyable Life

Praise for Taming Chronic Pain

Clear, engaging, and with the authenticity of personal experience.

—Patricia Morley-Forster, MD, FRCPC

Professor Emerita, Western University

Former Director of Pain Management Program at Western University

Former Medical Director of Pain Management Program

at St Joesph’s Hospital

2013 Canadian Anesthesiologists’ Society Gold Medal Winner

I would recommend this book to all chronic pain sufferers, family members, and doctors involved in managing chronic pain.

—Laxmaiah Manchikanti, MD, founder of Pain Physician

An essential handbook for anyone who has to manage pain at some point in their life. And isn’t that everyone?

—Dr. Linda Clever, author of The Fatigue Prescription

"In this practical and empowering guide, Amy Orr offers hands-on strategies and insights that combine the wisdom and empathy of someone who has lived with pain with the clear-eyed precision of a skilled writer. Taming Chronic Pain is a concise yet comprehensive toolkit for living with—and moving beyond—chronic pain."

—Laurie Edwards, author of Life Disrupted and

In the Kingdom of the Sick

www.laurieedwardswriter.com

Amy Orr has written a clear and persuasive primer on what it means to live with chronic pain. With a light, breezy style, she gives realistic advice on how to manage pain. No quack cures here; no shady fixes. Instead, you’ll find useful tips on everything from how to talk to your doctor to knowing when to be weird (you’ll understand when you read the book!). Relevant not only for people living with chronic pain, but also for those whose loved ones live in pain.

—Peter A. Ubel MD Professor of Medicine, Public Policy and Business Duke University Author of Sick to Debt (Yale, 2019)

and Critical Decisions (HarperCollins)

"In Taming Chronic Pain, Amy Orr sets out to offer guidance and support to chronic pain patients in virtually every aspect of their lives, and she succeeds in her mission masterfully. As she writes: ‘You are not your body but you are in your body, so it’s your job to take care of it.’ Orr helps every patient to do exactly that—sensibly, purposefully, and with optimism and good humor. She is frank in offering her advice or expertise, but without being preachy or didactic. Readers will come away feeling they have found a friend and valued advisor. I highly recommend Taming Chronic Pain and know that pain patients will benefit from reading it in many, many ways in their present and into their future."

—Joy H Selak PhD Author of You Don’t LOOK Sick! Living Well with Invisible Chronic Illness with Dr. Steven Overman

Taming

Chronic

Pain

A Management Guide

for a More Enjoyable Life

Amy Orr

Mango Publishing

Coral Gables

Copyright © 2019 by Amy Orr.

Published by Mango Publishing Group, a division of Mango Media Inc.

Cover Design: Roberto Núñez

Layout & Design: Roberto Núñez

Illustrations by Jules Hall

Jules Hall is a Graphic Designer in Kitchener-Waterloo, where she lives with her partner and two cats. This book is close to her heart as she lives with chronic illness. If you’re interested in seeing more of her work, visit juleshall.ca.

Mango is an active supporter of authors’ rights to free speech and artistic expression in their books. The purpose of copyright is to encourage authors to produce exceptional works that enrich our culture and our open society.

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Taming Chronic Pain: A Management Guide for a More Enjoyable Life

Library of Congress Cataloging-in-Publication number: 2019941780

ISBN: (print) 978-1-64250-037-0, (ebook) 978-1-64250-038-7

BISAC category code: HEALTH & FITNESS / Pain Management

Printed in the United States of America

For little Amy.

The hardest lessons are learned with time.

Table of Contents

Foreword

Getting Started

There Is No Miracle

Part 1

The Basics

Chapter 1

Knowing Your Pain

Exercise:

Know Your Pain

Chapter 2

Talking to Your Doctor

Exercise:

Making Notes for Your Doctor’s Appointment

Chapter 3

Age, Gender, and Pain

Exercise:

Seeing Through Age and Gender

Chapter 4

Exercise and Pain

Exercise:

Create a Set of Exercise Possibilities

Chapter 5

Boundaries

Exercise:

Identify and Set Your Boundary

Chapter 6

Resource Management

Exercise:

Analyze Your Resource Spending

Part 2

Mind and Mood

Chapter 7

Concentration and Cognitive Abilities

Chapter 8

Anxiety

Chapter 9

Anger

Chapter 10

Shoulding and Expectations

Chapter 11

Consistency, Goals, and Giving Up

Chapter 12

Strength Euphoria and Setbacks

Chapter 13

Career

Chapter 14

Relationships

Exercise:

Long-Term Mental Health Management

Part 3

Tools and Therapies

Chapter 15

Medications

Exercise:

Connect with Your Pharmacist

Chapter 16

Mindfulness and Meditation

Exercise:

Simple Meditation Practices

Chapter 17

Alternative Therapies

Exercise:

Rating Therapies

Chapter 18

Retraining Your Nervous System

Exercise:

Clearly Observe Your Own System

Chapter 19

Support Groups

Exercise:

Find a Support Group

Chapter 20

Planning for the Future

Exercise:

Prioritize Your Future

Who Wants a Paint-by-Numbers Life Anyway?

Addendum: For Caregivers

Summary of Important Lessons

Afterword

Acknowledgments

Bibliography

About the Author

Foreword

I was in the middle of a career as an anesthesiologist at a university teaching hospital in southwestern Ontario when I decided to go back to school. I wanted to learn more about chronic pain. I had been an obstetric anesthesiologist, relieving labor pain, and had also dealt with post-surgical pain in recovery and on the surgical floors. Surgical pain is acute pain. Doctors and nurses expect, understand, and know how to deal with acute pain. Usually what works for one patient after a certain surgery will work well to treat others after a similar surgery, with minor variations. But the world of chronic pain is very different, one problem being that what works for one person with a chronic pain condition might not work at all for someone with the same diagnosis. And the patient’s life situation, mood, and past experience with pain are important in working toward pain control.

When I first started working in chronic pain clinics, I was struck by the lack of knowledge, scarcity of research, and general misconceptions around the condition of chronic pain. Here was a problem that one in five people in the United States and Canada suffer from, yet doctors-to-be received almost no training in it at any time in their undergraduate or postgraduate years.

Different medical specialties often held opposing views on how to assess and treat chronic pain. How could a patient experiencing the confusion, fatigue, and life-changing experience of chronic pain make sense of their problem if even their doctors couldn’t? It is so multi-faceted and affects virtually every aspect of life, work, and relationships. Collaborative multi-disciplinary care for the patient, and education for the providers, seemed to make the most sense. Different approaches will appeal to different people.

Doctors do not come off well in Taming Chronic Pain, this recounting of author Amy Orr’s journey of discovering how to live well with her chronic pain. I am happy to say that, in the past ten years, education in pain management has become mandatory in most Canadian and American medical schools. There is even a path to certification in the specialty of Pain Medicine now in Canada, as well as several other countries. In the future, I hope that patients reporting ongoing pain to their doctor will meet with fewer confused looks, and more understanding, than Amy did in her medical journey.

I was very pleased to be invited to write the foreword for this book. I first met Amy in 2014 when I was the medical director of the Multi-Disciplinary Pain Program at St. Joseph’s Health Care in London, Ontario. To Amy, a curious person both by nature and training, this encounter was a revelation. The diagnosis gave a medical name to her sense of feeling broken, and set her on the path to discovering everything she could about her condition. She has spent the last few years writing Taming Chronic Pain to explain all she has learned to others who are still trying to make sense of their own experiences.

It is unusual to find a book on chronic pain written by one who experiences it daily. When that person is also a writer and a scientist, the voice speaks confidently to a wide audience. This is not a book describing all current research on various pain disorders. It is a self-guided tour through the multiple aspects of causation, therapy, and self-awareness that an individual with chronic pain needs to understand in order to help themselves.

I was impressed by the work, woven out of Amy’s personal experience and amplified by her thoughtfulness, curiosity, and research. Her style is candid about her own experiences and practical in her advice. The story reveals her struggles, but always guides the reader away from negativity to more positive feelings of choice and control.

Amy’s writing style is conversational and direct, even blunt. Although easy to read, the information cannot all be digested, or applied, quickly. Many chapters end with a practical exercise, which should be read and worked on, time and again, in an effort to perfect the underlying skills they promote.

I think this book is useful for both patients and doctors. It deals with real concerns that clinicians and patients face. For example, I soon learned in the clinic that the available medications played a relatively small role in treatment. Side effects were frequent, the pain-relieving benefits small, and insurance coverage often difficult. In the long-term, self-management strategies play a greater role than medications alone. Many chapters here are devoted to aspects of self-management such as being aware of your personal energy (Resource Management), keeping moving (Exercise and Pain), and dealing with the inevitable anxiety and sadness (Anxiety and Mindfulness and Meditation). The chapter Alternative Therapies is the most practical guide that I have yet seen to sorting through available options. Interestingly to me, she recommends rating the therapies not necessarily on scientific evidence, rather on how they help the individual feel better.

In the introduction, and in the concluding summary, Amy makes it clear that there is no miracle cure. Rather the key to a better life with pain is to make small changes, little by little. And to become skilled at observing your body’s response. This is the most important message of Taming Chronic Pain, told in such a way as to make it sound brand new. I only wish that I had this book available to me earlier so that I could have recommended it to my patients.

Patricia Morley-Forster, MD, FRCPC

Anesthesiology and Pain Medicine, Founder Status

Professor Emerita

Dept of Anesthesiology and Perioperative Care,

Western University, London, Canada

2013 Canadian Anesthesiologists’ Society Gold Medal Winner

Getting Started

There Is No Miracle

Living your life while managing your pain—now there’s a dangerous concept. For those who have experienced long-term chronic pain, this doesn’t feel like an option. You can live your life, or you can manage your pain, but doing both together seems impossible. How can you go about your daily life if everything you do makes you hurt? How can you do what’s best for your body without neglecting your life—your family, your job, your goals? Doing just one takes all the energy and strength you have. Believe me, I know this feeling well. It’s either/or, and your body isn’t giving you a lot of room to make the choice.

You don’t, however, have to choose. It is possible to live your life and take care of your pain simultaneously, but it isn’t easy and it isn’t finite. It takes time and effort and will probably constantly change as the nature of your pain changes, as your life changes.

So, please, do not approach this book as the answer. I’m going to save you a lot of time by telling you there is no single answer. There is not a solution to chronic pain. What there is, is more complex: management techniques, behavioral changes, coping strategies, and support mechanisms that will make living with chronic pain easier, will make you better at adapting, will help your loved ones adapt and understand, and that can be practiced and molded over time. You can learn a wide variety of methods to deal with the physical, financial, emotional, and mental challenges of living with pain that develop and grow with you and your circumstances, and get you as close to the life you want as possible. That life may or may not be normal, it may or may not be what you originally wanted, and it will probably not be pain-free, but it will be easier. It will become an option for you to do both: live and manage your health.

I have spent many years living with chronic physical pain, and for a long time I didn’t know that I was doing so. Doesn’t everyone just hurt all the time? Isn’t it normal to wake up exhausted after ten hours of sleep and be so stiff that you can’t bend your knees or move your back? Everyone gets hurt! Everyone gets sick and has pain! So you do what people do: suck it up, ignore it, move on with your life. Denial gets us through tough times, but beware. Denial comes in many forms, but for many chronic pain sufferers it comes in the guise of coping. Getting through each day, performing necessary tasks as best you can until your body gives out, gritting your teeth and plowing on ahead, despite how you feel—this is a form of denial. You are denying the reality of your body to get stuff done.

Don’t get me wrong—this can be an effective strategy for some, for a short while. It often seems necessary. But in the long term, it has many flaws. For one, it will spectacularly blow up in your face the minute it is stress-tested. Because, if you’re already living on the edge of what is possible for your body, when you are as healthy as you can be, what happens when you get a cold or break a bone or have to stay up through the