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INTRODUCTION
If you’re holding this book open with your feet or a bookstand because it hurts too much to use your hands, you’re in the right place.
Maybe you’re in a wheelchair because pain in your leg prevents you from walking. If so, stay right where you are, and read on. You also belong here.
For the rest of you: If you are awed or devastated by the fact that burning pain has apparently commandeered the emotional life of your loved one and you want to help, please join us.
If you think you’re suffering alone with Complex Regional Pain Syndrome (CRPS), I’m writing this book to prove otherwise. Even though the hypersensitized nerve condition (historically known as Reflex Sympathetic Dystrophy, or RSD) is considered mysterious and underdiagnosed, it is now estimated that 50,000 new cases appear in the United States each year. Suspected to be a dysfunctional reaction to minor bodily trauma ranging from a minor cut or sprained ankle to carpal tunnel surgery, it can happen to anyone at any time. Most disastrously, the challenge within the medical community to ensure an accurate diagnosis, deliver effective treatment, and have access to relevant research outcomes often leaves CRPS/RSD patients completely lost as a cloud of debate rages around them—at the very moment when they most need help.
I am writing as a CRPS/RSD survivor rather than as a doctor. I have conducted an extensive amount of research into CRPS, and in this book I have provided in-depth information on the condition, its various features, and the range of methods available to treat it. Because of the intense nature of CRPS pain, there are quite a few things to learn about living with the condition—after you’ve been diagnosed and have started your medical treatment. Losing the carefree use of a hand, an arm, a leg, or more, monitoring the minute-by-minute burning pain, and witnessing the effects of your condition on your family, friends, career, and financial situation are burdens you must bear outside of the doctor’s office. My aim in writing this book is to provide a guide for inspiration amid those challenges.
My Experience with CRPS/RSD
Over the course of one year I became an invalid with CRPS in both arms, and then was tenderly coaxed back into being an upright person who was learning to live with and manage her condition. Throughout the ordeal, I was forced to leave my rising career at age 26, move back home with my parents, and watch a myriad of friends and family help me shower and brush my teeth. I found myself unable to concentrate, cook, clean, comb my hair, or drive a car, and I spent many sleepless, frantic nights struggling to maintain my cool as burning pain laid siege to my arms. By day, I scoured every available resource for information on CRPS—and was terrified by the overwhelming clinical information and abundant horror stories that I found in place of encouragement. By night, I surprised myself by contemplating hand amputations or suicide to simply end the pain.
To regain control over my terrified and grieving self, I avoided sources of information on CRPS that reminded me negatively of my mysterious disease, and instead reached elsewhere as well as inward for ammunition with which to combat my moment-to-moment despair. I learned that one of the most important things I could do was stay calm. I received extensive support throughout this process—something that so few patients find amidst the blur of constant acute pain, compounding loss, and labyrinthine debates with doctors and insurance carriers. Most medical experts, family, and close friends carried me through the experience with encouragement and faith. That’s not to say my first chance at diagnosis wasn’t overlooked at a renowned U.S. hospital, I don’t have a number of bad medical office experiences to share, or that my closest friends and family provided exactly the support I needed without struggle. Rather, I will focus on what *did* work during this ordeal. For that, I am grateful. I found a neurologist and occupational therapist who spent the time to explain to me the crucial interaction in CRPS between mind, body, and spirit. Acupuncture and other complementary therapies greatly aided my healing and pain management. I explored my own means of distracting and expanding my mind, and dug deep enough to find the sense of humor and playful spirit that I had all but forgotten. I had to look at myself as someone forever changed, and (here’s the hard part) I had to learn to be at peace with my new life paradigm—even if I also knew that better treatments for CRPS/RSD always remain on the horizon. Otherwise, as much as I wanted to repeat “CRPS/RSD has destroyed my life” over and over again, I would have been the one suffering from recycled anger and grief by my focus on the negative.
My journey to reclaim certain abilities from my former life still continues, but the constant burning siege has stopped. With drug therapy, acupuncture, occupational therapy, manual therapy, and lifestyle modifications, I’m in control of my body once again. Since the time this book was originally published a decade ago, I had a relapse that lasted seven months. Yet, my life is again active and back in my hands: I re-entered the workforce and eventually rebuilt my career with the aid of assistive technology. I got married. I pursue my hobbies in a limited fashion, and I am carefully back in the gym. While my nervous system has since stabilized, I still learn new clues every day about keeping a close, yet forgiving, dialogue with my body.
Support Is Available
One element held true throughout this entire experience: Support was available to me if I knew where to look for it. And, boy, did I look! This is the knowledge I want to share with you. In Positive Options for Complex Regional Pain Syndrome (CRPS) you’ll find a wealth of tips on how to modify your lifestyle so you can better manage your condition and feel more empowered. You’ll find two interviews with practitioners that offer insights every patient should know. You’ll find a discussion of complementary therapies that you can try out and customize for your own treatment needs. You’ll find a list of "dynamite distractions" that can refresh your mind and help you rediscover your lighter, creative, and silly sides for when you just need to take your mind off the illness. You’ll find a chapter addressed to loved ones that provides advice and support to them in their difficult roles as encouragers and caregivers. You’ll find information on how everyone can help to increase CRPS/RSD awareness, and in the back of the book you’ll find an extensive list of resources that will help you begin to implement all of these suggestions.
CRPS can be an isolating condition, not only because so few understand it, but also because patients too often remain isolated from other patients’ triumphs. It’s important for you to know that the possibility of recovering from your lowest place does exist. What better way to testify to this fact than through the direct words of CRPS patients and survivors? Scattered throughout the book, you’ll find encouraging stories of healing and learning from actual CRPS patients. The contributors represent many ages, have suffered the gamut of symptoms, and have experienced various degrees of improvement. All of them embody strength of will, an open mind, and generosity in sharing their stories. Each contributor has embraced an individualized approach to dealing with CRPS, and each one offers something that too few CRPS patients have easy access to: real-life hope.
You can keep this book on your nightstand as an inspirational pick-me-up, or use it as a reference guide to treatments and helpful products or services. Thumb through the book for guidance in preparing to see a new doctor, or explore the insights imparted by the medical professionals interviewed within. Consider keeping the book open to certain pages conveniently listing activities that can be gentle, accessible, and bring you instant gratification. Mark some text that uniquely speaks to you about reframing your life situation, and read those lines daily, if not hourly. If you’re a caregiver, review the chapter devoted to your unique challenges and use it to find support for yourself. Whether you’re a CRPS patient or caregiver, consider this book a nurturing companion that reminds you of the positive options available to you and your family for dealing with the complex syndrome known as CRPS. Learning about these options now can save you essential time by preventing you from having to discover them at random later.
Please be optimistic and believe that your life will get better. CRPS can go into remission—or in many cases it can at least improve enough to be managed within a full and vibrant life. Not only is new awareness and research improved in past years, but a belief in your own rich spirit and resourcefulness are the most important things you can bring to the effort. Maintain affirmative thoughts; they can buffer your response to pain by subduing the anxiety that only further excites your nervous system. Learn what triggers a flare-up of your illness, and have faith in your ability to intercept this excruciating cycle. With practice, you can regain more control. Doing so, however, will take time. And patience. It is all about baby steps. So let’s take our first few.
CHAPTER 2: TREATMENT OPTIONS FOR CRPS
Since so many bodily systems and processes are involved in CRPS/RSD, there are many treatment angles for tackling the condition. Moreover, what works for one patient might not have any effect for the next, so keeping an open mind about your options can help you and your doctor find the best combination. Experts now agree that multidisciplinary treatment, incorporating various elements of physical and psychological wellness efforts, offers the best approach to taking control of CRPS.
Treatment needs to come as early as possible, as the most successful means of arresting CRPS is identifying and controlling it in its early stages. Prompt, simultaneous, integrated treatment can intervene early enough to prevent temporary dysfunction from becoming permanent. Finally, CRPS symptoms can change for better or worse in a highly volatile fashion, so monitoring treatment effectively requires very careful, time-intensive, almost daily assessment of the patient’s condition. This chapter offers an overview of treatments currently used for CRPS.
Complementary Therapies
Complementary therapies have literally carried me through my CRPS experience and continue to sustain me as regular sources of support in my life. Modalities such as acupuncture (on unaffected places), counseling, massage, TENS units, relaxation techniques, art therapy, and yoga holistically attune to your most sensitive needs and prop you up to weather the physical, mental, and emotional demands that CRPS makes of you. Moreover, as there is much still unknown about CRPS in the medical field, complementary therapies enable you to boost your own body’s healing abilities while following one of the many medical treatments at the same time.
Imagine you have fallen off a bicycle and lost your ability to balance and ride it again. CRPS has thrown you off that bike. Complementary therapy provides you with training wheels so you can remount and ride your bike until your body is able to balance on its own again. There is so much to say about this aspect of CRPS care that, rather than try to cover the topic here, I have devoted an entire chapter to it. Chapter 6 describes the complementary approaches available to treat CRPS.
Physical and Occupational Therapy
Getting your affected areas moving again is critical in regaining and maintaining normal function. Physical therapy can help you improve range of motion of joints, improve motor control, and introduce normal functioning. Forget what you know about traditional repetitive-exercise sports physical therapy; as CRPS therapy includes practices for desensitizing your skin, manual therapy (massage) to relieve muscle spasms and edema, and education on regaining and adapting your activities of daily living. You can also request that the physical therapist show you exercises and desensitization practices for you to continue on your own...
