Resources for People with Pain

This is a growing section that includes practical tools, information and resources relevant to the advancement of comprehensive integrative pain management.  The lens for what is included in this list is to consider what will be helpful to people with pain, healthcare providers, payers, purchasers, researchers, government agencies, non-government agencies, etc. who are all interested in advancing access to patient-centered, evidence-based pain management.

Please send your suggestions for additional resources to be added to this repository of resources to info@painmanagementalliance.org.

AACIPM Posts

Spotlight Patricia Herman, RAND: Four Papers Focus on Patient Use of Provider-Based Nonpharmacological Care for Chronic Spinal Pain

Spotlight Patricia Herman, RAND: Four Papers Focus on Patient Use of Provider-Based Nonpharmacological Care for Chronic Spinal Pain

We asked AACIPM Advisory Committee member, Patricia Herman, ND, PhD, Senior Behavioral Specialist, RAND Corporation, why this series was created. "Our hope was to provide some real-world information to payers regarding how patients use ongoing provider-based care for...

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Apps

TracknShare

Track & Share Apps have been consistently awarded “best health tracker app” acclaim, providing extreme customization and powerful graphing options that enable users to explore their health data using graphical analyses in simple ways.

Books

A Nation in Pain

by Judy Forman

Published in partnership with the International Association for the Study of Pain, A Nation in Pain offers a sweeping, deeply researched account of the chronic pain crisis, from neurobiology to public policy, and presents practical solutions that are within our grasp today. 

Leaves Falling Gently: Living Fully with Serious & Life-Limiting Illness Through Mindfulness, Compassion & Connectedness

by Susan Bauer-Wu, PhD, RN

A life-limiting illness may have taken hold of your body, but you can still live more fully and openly than ever before. You can enrich your life by exploring ways to make peace with yourself and deepen connections with friends and family. This book will help you reap the benefits of mindfulness and acceptance, one day at a time.

Needless Suffering

by David Nagel

Needless Suffering offers a sociological examination of a complex medical problem: chronic pain and the inability of doctors and other health professionals to understand and manage it in their patients. People in pain, writes Dr. David Nagel, are the poor of the medical world. Like the poor, they are stigmatized and left at the mercy of powerful social actors who tend to work in their own self-interest, frequently at the expense of those they propose to serve. 

The Last Scroll

by James Fricton, DDS

Dr. James Fricton set out to write a book about the factors that tip the balance between health and illness, particularly chronic pain, and what actions can be taken to enhance energy and wellness in the seven realms of our lives-the mind, body, spirit, lifestyle, emotions, society, and environment. He ended up with a tale that is part self-help book, part thriller and part Italian romance.

Support Groups

Ehlers Danlos Society

The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions, proudly working to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population: Giving HOPE to all those whose lives are affected by EDS and HSD.

The Pain Community

The Pain Community (TPC) is a non-profit organization that engages patients, caregivers, healthcare providers and researchers to improve access to effective pain management. Through comprehensive, integrative pain care, people can regain a life with pain at a higher level of wellness. TPC has educational and advocacy tools as well as houses research resources from respected experts in the field of pain.

US Pain Foundation

The mission of U.S. Pain Foundation is to empower, educate, connect, and advocate for people living with chronic conditions that cause pain. As a 501(c)(3) organization dedicated to serving those who live with pain conditions and their care providers, U.S. Pain Foundation helps individuals find resources and inspiration.

Videos

Websites

Chronic Pain Research Alliance

Mounting scientific evidence demonstrates significant rates of overlap among a cluster of prevalent poorly understood pain disorders that solely or predominantly affect women. The goal of CPRAlliance is to put an end to the neglect, dismissal and discrimination faced by these patients suffering from chronic pain, thereby improving their quality of life and medical care.

Chronic Pain Resource Center

This collection of resources is to help patients with chronic pain, their families and providers who care for them. These include tools to help patients and their families to understand, monitor and manage their pain, as well as guidance on the safe use, storage and disposal of opioid medicines. It also includes education for families in the potentially life-saving role of preventing, identifying and treating medication overdose. 

Ehlers Danlos Society

The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions, proudly working to provide global learning conferences, collaborative research and education initiatives, awareness campaigns, advocacy, community-building, and care for the EDS and HSD population: Giving HOPE to all those whose lives are affected by EDS and HSD.

FibroGuide

FibroGuide offers information and insights on 10 different self-care topics, or Steps. The information presented within these Steps is based on key strategies, such as physical activity, education, and support, that have been shown to help people with fibromyalgia manage their symptoms.

IM4US

Integrative Medicine for the Underserved is a collaborative, multidisciplinary group of people committed to affordable, accessible integrative health care for all. Through outreach, education, research, and advocacy, we support those dedicated to promoting health in underserved populations. Together we work to shift the current paradigm towards equity, wellness, prevention, patient empowerment, and self-care.

Institute for Chronic Pain

The Institute for Chronic Pain is an educational and public policy think tank whose mission is to make pain management more effective by changing the culture of how chronic pain is treated. We engage in research, development, and promotion of scientifically accurate information related to the field of chronic pain management. We do so by bringing together thought leaders from around the world to provide academic-quality information that is approachable to all stakeholders in the field. 

International Pain Foundation

The International Pain Foundation (iPain) is devoted to advancing access and quality care in order to help people suffering from a variety of muscular skeletal, inflammatory, neurological, emotional, degenerative and often rare conditions that involve chronic pain through education, awareness, and access to care projects.

International Pelvic Pain Society

The International Pelvic Pain Society promotes education about interdisciplinary approaches to the evaluation and treatment of health conditions associated with chronic pelvic pain; supports individuals living with chronic pelvic pain by improving access to care and supporting physical and emotional well-being; and raises public awareness through education, outreach and engagement and improves the lives of patients worldwide.

National Pain Strategy

The objectives of the National Pain Strategy aim to decrease the prevalence of pain across its continuum from acute to high-impact chronic pain and its associated morbidity and disability across the lifespan. The intent is to reduce the burden of pain for individuals, their families, and society as a whole.

National Patient Advocate Foundation

National Patient Advocate Foundation brings patient voices to health system delivery reform. We develop and drive initiatives promoting equitable access to affordable quality health care through policy action and public and private partnerships. Our primary objective is to prioritize the patient voice in health system delivery reform to achieve person-centered care.

Patient Mind

Patient Mind Inc. provides education to improve dialogue during healthcare visits. The average face-time with a healthcare provider is less than eight minutes. These eight minutes are extremely important for the patient. When patients are educated prior to this interaction, they are more likely to understand and adhere to the prescribed treatment plan. The patient is also more prepared to discuss symptoms and their condition with confidence. This enables healthcare teams to get a better picture of the patient’s condition, which sets the groundwork for better treatment plans.

painACTION

The goal of painACTION is to help people improve their self-management of their pain condition. Written with the help of health educators, pain experts, and people dealing with pain, this site is a resource to come back to repeatedly.

The Arthritis Foundation

The Arthritis Foundation helps you live your best life by creating a powerful network of support through shared experiences, empowering information and meaningful connections. Whether it’s online or in person, we are all working together to promote life-changing resources and research, to push for change and to create community connections that welcome, inform and uplift. This is what makes our community of millions thrive and why we are all Champions of Yes.

The Pain Community

The Pain Community (TPC) is a non-profit organization that engages patients, caregivers, healthcare providers and researchers to improve access to effective pain management. Through comprehensive, integrative pain care, people can regain a life with pain at a higher level of wellness. TPC has educational and advocacy tools as well as houses research resources from respected experts in the field of pain.

Understanding Myositis

MSU is instrumental in helping to improve the lives of patients fighting this rare, complicated immune-mediated muscle, skin, and often multi-organ disease by being the very first patient-centered myositis organization to offer live, online, video patient support, education, and activity sessions that simply make sense for those living with a muscle disease that involves limited mobility and with patients spread across the world.

US Pain Foundation

The mission of U.S. Pain Foundation is to empower, educate, connect, and advocate for people living with chronic conditions that cause pain. As a 501(c)(3) organization dedicated to serving those who live with pain conditions and their care providers, U.S. Pain Foundation helps individuals find resources and inspiration.

 

 

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