Your Child's Well-Being - Juvenile Fibromyalgia

TABLE OF CONTENTS AUTHORS’ FOREWARD NOTE and DISCLAIMER Chapter 1 START AT THE BEGINNING: You Are Not Alone Does Your Child Have a Diagnosis? How To Talk Openly About Your Child’s Diagnosis Feelings About the Diagnosis of Fibromyalgia Building a Stronger “You” Chapter 2 WHAT YOUR DOCTORS WILL TELL YOU: Learning the Ins and Outs What Is It? Who Gets Fibromyalgia? How Is Fibromyalgia Diagnosed? What Are the Causes? How is Fibromyalgia Treated? Medication and Pain Management Sleep Hygiene Exercise Counseling and Cognitive Behavioral Therapy [CBT] Chapter 3 TRADITIONAL TREATMENTS AREN’T YOUR ONLY OPTIONS: Alternative and Complementary Resources to Mainstream Medicine Common Sense The Kitchen Sink Approach Massage Therapy Acupuncture Emotional Freedom Technique (EFT aka Tapping) Becoming Calm Breathing Visualizing Gazing Yoga Chapter 4 YOU KNOW YOUR CHILD: Balancing Home, Life and School Easing Your Child’s Pain and Soreness Talking with Your Child Staying One Step Ahead The Body The Mind The Spirit School Chapter 5 PLANNING FOR TODAY AND TOMORROW: Focus on Personal and Financial Resources Ensuring Your Family Wellness Managing Your Financial Wellness Chapter 6 COMING THROUGH TO THE OTHER SIDE Betty’s Story Laura’s Story Tom’s Story AFTERWORD Appendix RESOURCES FOR FURTHER EXPLORATION ----------------------------------------------------------------------------------------------------------------- AUTHORS’ FOREWORD Parents experience an excess of overwhelming feelings and a heightened sense of responsibility whenever a child is ill and hurting. If you are one of these parents, you have probably asked yourself, “Where do I go? What do I need to learn?” The information is out there, yet it may be hard to find. That is why “Your Child’s Well–Being” series was created. Those two questions above are especially relevant if your child is diagnosed with Juvenile Fibromyalgia Syndrome. Getting the Jump on Juvenile Fibromyalgia will empower you with basic information and gentle guidance. It is both a private coach, offering advice and helpful techniques, and your “personal cheerleading team,” lending resources and strength as you work toward your child’s well–being. Each chapter reassures you that the stress of caring for your child is manageable and gets easier over time. Fibromyalgia Syndrome [FMS] is now a recognized clinical entity causing chronic and disabling pain. There is no medical test one can take that will result in a definitive diagnosis. In fact, it has only been in the last couple of decades that doctors have begun to distinguish this condition from the many easier to diagnose syndromes, such as Depression, Chronic Fatigue Syndrome, Lupus, Multiple Sclerosis, to name a few. -------------------------------------------------------------------------------------------------------------------- AFTERWARD Parents are amazing people. They will go to the ends of the earth to help their children. They will trawl the Internet into the late hours of the night looking for information to make sense out of what ails their child. They are the first and best advocates for their child. To each of you parents who are caring for a child with Fibromyalgia, we hope you will carry these few words of advice with you: First, it is important that you understand what Fibromyalgia is, how it affects your child, your family and how to take care of yourself so that you can take care of your child. -------------------------------------------------------------------------------------------------------------- PRAISE This book is a "must read" for any parent of a child with widespread pain. We now know that a cluster of symptoms, such as pain, fatigue, mental fogginess, difficulty sleeping, anxiety, and depression, in any combination, are part of the fibromyalgia-like syndrome. This book is easy to read and provides some important guides on how parents can help their child. I give it a strong recommendation! Lonnie Zeltzer, MD Director, Pediatric Pain and Palliative Care Program Distinguished Professor of Pediatrics, Anesthesiology, Psychiatry and Biobehavioral Sciences David Geffen School of Medicine at UCLA Having a child diagnosed with juvenile fibromyalgia sometimes can be a long and confusing journey and this book is a truly empathic guide that should give parents and caregivers a sense of empowerment and hope. Most importantly, the authors have put together an easy-to-read book which offers practical support and resources for parents to get the best care for their child and assist their child to achieve a well-balanced life despite their symptoms. I would recommend it as a must-read for parents of teens with JFM. Susmita Kashikar-Zuck, PhD. Professor of Pediatrics and Licensed Psychologist Cincinnati Children’s Hospital Medical Center This is a great resource you’ve put together – well done! And thank you for including EFT/tapping as a tool that folks can use to help relieve both the physical and emotional discomfort faced by the children and the people who love them. - Brad Yates, Author of The Wizard’s Wish --------------------------------------------------------------------------------------------------------------------- RESOURCES • Websites and Blogs The following list gives you a head start on searching the Internet for information and resources. Explore any or all of those on this list, or conduct your own Google search. Any website will probably offer some kernel of information that may resonate with you and/or your child. As you use the Internet, bear in mind a couple of caveats. First, many websites are not regularly updated. Often, websites spring up and actively and passionately disseminate information and offer support. Then, over time, the site’s editor(s) may run out of new information or sources to share, and the website becomes inactive. Just remember to ask yourself, “When was this information published? How current is it?” Second, consider the source. Like with other medical conditions, healthcare and pharmaceutical companies use the Internet and social media to promote their companies’ own agenda along with providing information to the consumer. Getting a second opinion or finding independent confirmation is always a good practice. Fibromyalgia Associations and Directories www.fmaaware.org: The National Fibromyalgia Association, a world–wide support organization founded by Lynne K. Matallana in 1997, is dedicated to sharing all the most important information on Fibromyalgia and related topics. www.enfa-europe.eu: The European Network of Fibromyalgia Associates organizes sister Fibromyalgia associations throughout Europe to raise awareness of, give voice to and influence policy decisions on Fibromyalgia.