Positive Options for Complex Regional Pain Syndrome (Crps): Self-Help and Treatm

Description: Positive Options for Complex Regional Pain Syndrome (Crps) by Elena Juris, Dr Edward Carden, Cynthia Toussaint Imagine if the mere breeze of an air conditioner were to send you into excruciating pain. For those suffering from Complex Regional Pain Syndrome (CRPS), historically called Reflex Sympathetic Dystrophy (RSD), this crippling neuropathic pain is an unrelenting reality. With symptoms such as swelling, hypersensitivity, stiffness, burning pain, and temperature abnormalities, CRPS can develop at any time and quickly leaves its victims disabled and isolated. This book explains CRPS in an accessible style for all readers, and provides the latest medical treatments, self-help techniques, complementary therapies, and holistic strategies for maximizing the potential for healing. Readers will find a wealth of tips on life modifications to help better manage their condition. Theyll find two interviews with practitioners who offer insights every patient should know, with the help of pain specialist Edward Carden, MD, and occupational therapist and neurological acupuncturist Sheri Barnes. Theyll find a discussion of complementary therapies to tailor to their needs. Theyll find a list of "dynamite distractions" that can refresh the pain-wracked mind and help readers rediscover their imagination and humor, when they just need to take their mind off the illness. Theyll draw hope from real patient testimonies on techniques for transforming the pain and discomfort of CRPS. Theyll find a chapter addressed to loved ones, providing advice and support in their difficult roles as encouragers and caregivers. Finally, readers will find information on how everyone can help to increase CRPS awareness, and an extensive list of resources to help patients and caregivers begin to connect with the support available.CRPS remains a mysterious, poorly understood condition and few books about it exist, as knowledge of the syndrome continues to evolve. Previously, the condition was called Reflex Sympathetic Dystrophy (RSD). This second, retitled edition to the original Positive Options for Reflex Sympathetic Dystrophy (RSD): Self-help and Treatment (2004) is chock-full of new information, reflecting a decades worth of advancements following the popular debut of the books first edition. FORMAT Hardcover LANGUAGE English CONDITION Brand New Author Biography A recovering CRPS patient currently in remission, Elena Juris has developed patient and professional health education programs and materials for organizations, government agencies, and companies such as the American Cancer Society, American Association of Poison Control Centers, and U.S. Department of Health and Human Services. The Deputy Director of the National Institutes of Health Training Center, she lives in Washington, D.C. Dr. Edward Carden lives in Marina Del Ray, CA. Cynthia Toussaint lives in Studio City, CA. Table of Contents ABRIDGED TOC 1) What is CRPS/RSD? 2) Treatment Options for CRPS 3) Tips for Your Body and Soul 4) A Conversation with a Physician 5) A Conversation with a Complementary Care Provider 6) A World of Support: Complementary Services 7) Dynamite Distractions 8) Help for the Helpers: A Chapter for Caregivers 9) Everyone Can Get Involved 10) A Parting Perspective EXTENDED TOC (Note: Page numbers will change.) Contents 7 Foreword 10 Preface 11 Acknowledgments 13 Introduction 14 My Experience with CRPS/RSD 14 Support Is Available 15 Chapter 1: What Is CRPS/RSD? 17 Features of CRPS/RSD 18 Advanced CRPS/RSD 19 What Causes CRPS/RSD? 19 The CRPS/RSD Cycle 20 Why You? 21 Diagnosis 21 Finding a Doctor 25 You and Your Doctor 26 Chapter 2: Treatment Options for CRPS/RSD 30 Complementary Therapies 30 Physical and Occupational Therapy 30 Drug and Infusion Therapy 33 Nerve Blocks 37 Surgical Treatments 40 Prognosis 41 Chapter 3: Tips for Body and Soul 43 Activity Modifications 43 Quick Pick-Me-Ups, Calmer-Downers, and Visualizations 50 Chapter 4: Direct from the Practitioner: A Conversation with a Physician 59 An Interview with Edward Carden, M.D., FRCP[C], DipAAPM 59 Chapter 5: Direct from the Practitioner: A Conversation with a Complementary Care Provider 71 An Interview with Sheri Barnes, M.Ac., OTR/L 71 Chapter 6: A World of Support: Complementary Services 77 Occupational Therapy 78 Bodywork/Massage 78 Acupuncture 80 TENS Unit 81 Biofeedback 82 Meditation 83 Hypnotherapy 87 Yoga 87 Qigong 88 Tai Chi 88 Feldenkrais Method 89 Light Therapy 89 Hyperbaric Oxygen (HBO) 90 Natural Creams, Oils, and Soaks 90 Psychological Counseling 91 Art Therapy 92 Writing 93 Naturopathic and Homeopathic Medicine 93 Moving Forward: Rehabilitation Services and Disability Employment 94 Making Progress 98 Chapter 7: Dynamite Distractions 99 Comedy 99 Miscellaneous Brain Candy 101 Emotional Release 102 Music 103 Creating Sanctuary 103 Arts and Crafts 104 Nature Hiking 107 Gardening: A New Slant 108 Birdwatching 110 Photography 110 Traveling Inward 111 Traveling Outward 112 Last-Resort Reality-Check Exercise, or "Misery Loves Company" 113 Keep a Distraction Quick List 113 Chapter 8: Help for the Helper: A Chapter for Caregivers 115 Understanding the Patient 115 Peeking into Each Others World 120 Using Humor 121 Understanding Yourself 122 Celebrating and Affirming 127 Chapter 9: Everyone Can Get Involved: Working to Increase Awareness of CRPS/RSD 128 Daily Communication 129 Pamphlet Distribution 129 Awareness Months 130 Fundraising 130 Letter Writing 131 Petitions 131 Informal Medical Professional Education 132 Speakers Bureau 132 Caregiver Awareness 132 Getting Started 134 Chapter 10: A Parting Perspective 135 References 139 Chapter 1: "What Is CRPS/RSD?" 139 Chapter 2: "Treatment Options for CRPS/RSD" 139 Chapter 6: "A World of Support: Complementary Therapies" 140 Chapter 8: "Help for the Helper: A Chapter for Caregivers" 141 Where to Go from Here: Resources 142 Research Studies and Experimental Treatments 142 Medical and Pharmaceutical Resources 150 Counseling and Psychology Resources 151 CRPS/RSD Organizations and Online Groups 151 General Pain Organizations and Resources 154 Wounded Veteran Organizations 155 Organizations for Caregivers 156 Other Wellness Organizations and Resources 156 Disability Support Resources 160 Transportation 160 Recognizing Medical "Quacks" or Fraud 161 Adaptive Equipment 161 Additional Medical Assistance 162 Job Resources for People with Disabilities 163 Recommended Reading 163 Index 166 Review "Ms. Juris has written a wonderful, readable, hope-filled book for individuals and families struggling with a too often intractable foe." -- Jim Broatch, MSW, Executive Director, Reflex Sympathetic Dystrophy Syndrome Association of America "Finally -- an inspirational, positive voice that speaks to us calmly, confidentially, wisely and equally comforting." -- Helen Small, President, PARC, Promoting Awareness of RSD/CRPS in Canada "Elena does a wonderful job demonstrating how multiple complementary therapies play a critical role in the individualized rehabilitation of RSD." -- Stephanie Gilliam, MPT, Physical Therapist, Arlington, VA "An outstanding gift of Elenas expertise is her expansive resource list of available help for this condition. A significant contribution." -- Marshall S. Frumin, MD, Orthopedic Surgeon, Houston, TX "I recommend this book with enthusiasm to people struggling with RSD, and to those who are involved in their care." -- Dr. Amanda C de C Williams, Reader in Clinical Health Psychology and Consultant Clinical Psychologist, University of London, UK "Elena bravely explores the mind-body connection and passionately articulates treating the whole person, detailing every option along the way." -- Cynthia Toussaint, Founder and Spokesperson, For Grace "An insightful and inspiring account for RSD sufferers and the health care community." -- Melissa Blank, MPT, Physical Therapist, Baltimore, MD "Provides lifesaving wisdom and is not afraid to examine the brutal difficulties of constant pain and lost independence." -- Sosha Devi, Yoga for Chronic Pain Project; American Pain Foundation, Baltimore, MD "This highly practical and action-oriented book is the most comprehensive storehouse of pain-relief Ive seen around." -- Phyliss Shanken, MA, Psychologist, INTROSPECT of Buxmont, Colmar, PA "This inspiring and incredibly informative book provides dozens of proven ways to regain control of your health." -- David Spero, RN, Author of The Art of Getting Well: A Five-Step Plan for Maximizing Health When You Have a Chronic Illness Review Quote Ms. Juris has written a wonderful, readable, hope-filled book for individuals and families struggling with a too often intractable foe." Excerpt from Book INTRODUCTION If youre holding this book open with your feet or a bookstand because it hurts too much to use your hands, youre in the right place. Maybe youre 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 youre suffering alone with Complex Regional Pain Syndrome (CRPS), Im 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 youve 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 doctors 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. Thats not to say my first chance at diagnosis wasnt overlooked at a renowned U.S. hospital, I dont 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 (heres 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, Im 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) youll find a wealth of tips on how to modify your lifestyle so you can better manage your condition and feel more empowered. Youll find two interviews with practitioners that offer insights every patient should know. Youll find a discussion of complementary therapies that you can try out and customize for your own treatment needs. Youll 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. Youll find a chapter addressed to loved ones that provides advice and support to them in their difficult roles as encouragers and caregivers. Youll find information on how everyone can help to increase CRPS/RSD awareness, and in the back of the book youll 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. Its 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, youll 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 youre a caregiver, review the chapter devoted to your unique challenges and use it to find support for yourself. Whether youre 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 lets 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 v Description for Sales People * At least 50,000 new cases of CRPS are estimated to occur annually in the U.S. It affects children, teenagers, young and older adults. Females are three times more likely to develop the condition than males. It can develop from something as minor as a sprained ankle. * Theres a new group now afflicted by CRPS: Iraq and Afghanistan U.S. war veterans who face pain syndrome complications long after their blast injuries have healed. * Increased media coverage of teenagers with CRPS and further advancements in treatment studies have accelerated since this book was first published in 2004. * Early diagnosis of the condition within the first three months of onset is critical, and yet awareness of the condition within the medical community is lacking. Sufferers and caregivers need to know about CRPS firsthand to act quickly. * The few other CRPS books on the market are either self-published memoirs or highly technical analyses. This book provides readers with an accessible, layperson approach to understanding CRPS with content and tone that falls between these extremes. * Includes extensive resource section for patients and caregivers, patients testimonials, lists of creative exercises to help patients raise their minds beyond the pain, and interviews with medical professionals who treat CRPS/RSD patients Details ISBN1630268925 Author Cynthia Toussaint Short Title POSITIVE OPTIONS FOR COMPLEX R Pages 242 Publisher Hunter House Publishers Language English Edition 2nd ISBN-10 1630268925 ISBN-13 9781630268923 Media Book Format Hardcover Year 2014 Imprint Hunter House Publishers Subtitle Self-Help and Treatment Illustrations Illustrations, black and white Publication Date 2014-10-16 DEWEY 616/.0472 Series Positive Options for Health Edition Description 2nd ed. Audience General We've got this At The Nile, if you're looking for it, we've got it. 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