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LEARNING
to cope with
CRPS / RSD
Putting life first and pain second
KAREN RODHAM
LONDON AND PHILADELPHIA
The Four Pillars of Care (p.17), copyright © 2012 Royal College of Physicians, reproduced with
permission from Goebel, A., Barker, C.H., Turner-Stokes, L. et al. (2012) Complex Regional Pain
Syndrome in Adults: UK Guidelines for Diagnosis, Referral and Management in Primary and
Secondary Care. London: RCP.
This edition published in 2015
by Singing Dragon
an imprint of Jessica Kingsley Publishers
73 Collier Street
London N1 9BE, UK
and
400 Market Street, Suite 400
Philadelphia, PA 19106, USA
www.singingdragon.com
First edition published by the author in 2013
Copyright © Karen Rodham 2013, 2015
Front cover image source: © Dengess | Dreamstime.com - Flowering Cactus Photo
All rights reserved. No part of this publication may be reproduced in any material form (including
photocopying or storing it in any medium by electronic means and whether or not transiently or
incidentally to some other use of this publication) without the written permission of the copyright
owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or
under the terms of a licence issued by the Copyright Licensing Agency Ltd, Saffron House, 6–10
Kirby Street, London EC1N 8TS. Applications for the copyright owner’s written permission to
reproduce any part of this publication should be addressed to the publisher.
Warning: The doing of an unauthorized act in relation to a copyright work may result in both a civil
claim for damages and criminal prosecution.
Library of Congress Cataloging in Publication Data
Rodham, Karen, 1970-
Learning to cope with CRSP/RSD : putting life first and CRPS/RSD second / Karen Rodham.
pages cm
Includes bibliographical references and index.
ISBN 978-1-84819-240-9 (alk. paper)
1. Reflex sympathetic dystrophy--Popular works. 2. Reflex sympathetic dystrophy--Patients--
Biography. I. Title.
RC422.R43R64 2015
616’.0472--dc23
2014013397
British Library Cataloguing in Publication Data
A CIP catalogue record for this book is available from the British Library
ISBN 978 1 84819 240 9
eISBN 978 0 85701 188 6
‘Not in ten years…’
To all the Gadds and Gaddlets –
thank you for being you.
ACKNOWLEDGEMENTS
I’d like to take this opportunity to thank my colleagues (who are,
truth be told, now friends too) at the Royal National Hospital for
Rheumatic Diseases (RNHRD), with whom I have very much
enjoyed working, and I’d also like to thank all the people living
with CRPS who have shared their stories and experiences with me
as we have worked together to find a way to cope with the
challenges that come with CRPS; you have all taught me so much.
Of course, I would also like to thank the RNHRD Donated Funds
and Charitable Trustees Committee who funded the research that
informs part of this book (Ref. RBB347). Lastly, thank you to
Alison and to Julie who gave up their precious time to read and
comment on earlier versions of this book.
CONTENTS
Introduction
Chapter 1 What is CRPS?
Chapter 2 What is it like to live with CRPS?
Happy 58, male – left hand and wrist
Helen 44, female – left arm, left leg, back
Cloggy 56, female – left arm, left shoulder, neck
Sam 46, male – left side of head, left arm, left leg
Sarah 48, female – left leg
Melanie 48, female – left leg
Thomas 30, male – right leg, both arms
Crystal 44, female – right arm, both shoulders, left leg
Stella 65, female – left arm
Snoopy 46, female – both legs
Chapter 3 How can I cope with CRPS?
Chapter 4 CRPS does not just affect the person who is diagnosed
with CRPS
Chapter 5 Endings
USEFUL RESOURCES
REFERENCES
INDEX
INTRODUCTION
In the UK we use the term Complex Regional Pain Syndrome
(CRPS), but in America, it is more common to use the term RSD
(Reflex Sympathetic Dystrophy). Throughout this book, I will be
using the UK term CRPS.
If you are reading this book, I imagine you are either living
with CRPS yourself or know someone who has the condition. This
book is something I have wanted to write for a while. I have been
working with people living with the chronic form of CRPS since
2006 and now feel as if I have enough of an insight into this
‘difficult-to-live-with’ condition to share the lessons I have learned
from the people I have worked with.
It is my hope that this book will be useful to those who are
themselves living with chronic CRPS, because within its the pages
they will see that they are not alone. I also hope it will be a useful
resource for friends, family and colleagues of people living with
CRPS, because it will enable them to have a glimpse of what it is
like to live with CRPS. Through this glimpse, their understanding
will grow and their ability to support the person who has CRPS
will grow too.
I have also written this book as a last offering in my role as
CRPS Health Psychologist, for I will be leaving the ‘Min’ shortly
after this book is published and I wanted to make sure that the
knowledge I have been privileged to gain over the past seven or so
years is presented in book form so that other psychologists can
build on the lessons I have learned, and, perhaps most importantly,
I hope that people living with CRPS and their friends and family
will find the content useful.
Chapter 1
WHAT IS CRPS?
C omplex Regional Pain Syndrome (CRPS) is a pain condition
that usually occurs after an injury, but it can start
spontaneously (Harden et al. 2010; Kozin 2005; McBride and
Atkins 2005; Stanton-Hicks 2006). Burning pain is the most
characteristic symptom, but people also report swelling, coldness,
colour changes, hypersensitivity, as well as increased sweat and
hair growth. A person who is herself living with CRPS, who very
kindly read a draft of this book, told me that although the original
description of the symptoms that I had included was technically
correct, she felt it downplayed the experience of pain. To her,
CRPS was ‘pain, pain, pain’. I promised to include her quote to
make sure that this was absolutely clear. Although the symptoms
are usually experienced in a single limb, it is possible for CRPS to
occur in more than one limb, and indeed in other body regions
(Baron et al. 2002; Galer et al. 2000; Kozin 2005; Stanton-Hicks et
al. 1995; Veldman et al. 1993). For an estimated 7 per cent of
people, CRPS can spread to other limbs.
Many people who have CRPS experience it as a transient
problem. De Mos and colleagues (2009) suggest that about 85 per
cent of people improve within the first year after onset, but Goebel
and colleagues (2012) point out that it is important to remember
that improvement does not necessarily equal recovery. Indeed, they
go on to say that a definition of what constitutes recovery has not
yet been agreed. It might be more accurate to say that, rather than
the symptoms disappearing, improvement means that people have
found a way to live with the symptoms. So, there is a significant
minority of people (about 15–20%) who will develop chronic
CRPS. For this group of people, the experience of long-term
symptoms or impairment is common. It is this group of people that
I have worked with since 2006, and it is this group – who are
essentially living with a long-term chronic pain condition – that
this book is directed at.
DIAGNOSIS
Diagnosis is based on the Budapest Criteria, drawn up by an
international group of CRPS experts to help health professionals
make a diagnosis. These have now been adopted by the
International Association for the Study of Pain (IASP) and can also
be found on the website of Royal College of Physicians. Whilst
these criteria are undoubtedly useful, one challenge for health
professionals looking to explain a patient’s symptoms is that there
are currently no tests or biomarkers to confirm diagnosis of CRPS.
So, while prompt diagnosis combined with early treatment is
recommended, it is not so straightforward. CRPS is not a common
condition and, as such, few health professionals will be familiar
with it. Add to this the many names that CRPS has had in the past –
Algodystrophy, Sudeck’s Atrophy, Causalgia, Reflex Sympathetic
Dystrophy, Shoulder-Hand Syndrome, Fracture Disease – and if
you also consider the problem that the range of CRPS symptoms
could be signs of a large number of other serious conditions, it can
take some time for other possible explanations to be ruled out. This
means that people with CRPS often experience a series of different
(mis)diagnoses and a consequent delay in diagnosing CRPS.
Indeed, for many of the people I have worked with, the process
of receiving a formal diagnosis has been a lengthy one. The
uncertainty that surrounds this process can be very unsettling for
the person concerned and may result in them questioning whether
their symptoms are ‘all in their mind’ when test results are
repeatedly negative and healthcare professionals seem unsure about
how to explain their symptoms. As a result, when a person receives
their diagnosis, this can be a mixed blessing: there is finally an
explanation for their symptoms, but there remains uncertainty
about prognosis, mixed with frustration at the length of time it has
taken to reach a diagnosis.
HOW IS CRPS TREATED?
The ‘Gold Standard’ for treating CRPS conforms to the Four Pillars
of Care (see Figure 1.1). These aim to reduce pain, restore function,
enable people to manage their condition and improve their quality
of life (Harden 2001).
Figure 1.1: The Four Pillars of Care
Reproduced from Goebel, A., Barker, C.H., Turner-Stokes, L. et al. (2012)
Complex Regional Pain Syndrome in Adults: UK Guidelines for Diagnosis,
Referral and Management in Primary and Secondary Care. London: RCP.
