Remarkably, an estimated 115 million people in the US suffer from chronic pain. No matter what your specific pain condition, there are many who may understand what you and your loved ones are experiencing. But how do you find and connect with others?
That’s where pain awareness groups come in. They offer many valuable services to help people like you. Some of the many benefits include support, education and access to care. Mostly the organizations’ goals are to create awareness, provide advocacy, share research and build a community.
We’re putting the spotlight on three such pain awareness groups: International Pain Foundation, National Fibromyalgia & Chronic Pain Association and Foundation for Peripheral Neuropathy. These organizations provide much more than advocacy; they share valuable resources, research and knowledge – all at no cost to you. Here’s how:
International Pain Foundation (iPain)
iPain, an organization not tied to a specific condition or illness, supports the notion that chronic pain is a real and complex disease that exists either by itself or it can be linked with other medical conditions.
As a charity, iPain campaigns for effective pain care through an array of treatment options, which are widely inaccessible. It also underlines that chronic pain is an unrecognized and under-resourced public health crisis with devastating personal and economic impacts. Most importantly, iPain operates under the belief that allowing people to suffer with unmanaged pain is immoral and unethical.
How this pain organization can help you
Education – Comprehensive learning resources, including online and printed information about disease conditions, symptoms, treatments and support links. Webinars, packed with great information from doctors, patients, caregivers and other professionals.
Awareness – iPain awareness projects are reaching around the world including Music Moves Awareness, painPOP, RSD/CRPS Quilts and painting the world orange in the month of November.
Community – A social network and events for pain patients. iPain provides hope and inspiration in community projects; iPain delegates, celebrity delegates, newsletter, blogs and more. There’s even a free app for pain sufferers to carry educational materials and social networking everywhere they go.
Access to care – Helping people obtain appropriate pain resources in order to preserve or improve their health. Examples include abuse deterrent medications, opioid induced constipation, policy efforts, step therapy, electronic health record and prescription monitoring programs.
iPain embodies the power of pain by taking the power away from the pain and bringing it back to the patient. They put a spotlight on over 150 conditions that involve chronic pain with an all-volunteer team – including the Board of Directors – so the funds raised go directly to run programs and not overhead.
Grass-root awareness projects are friendly for public participation. They have a variety of funding sources keeping their focus on the projects helping the pain community. They empower the patient with skills that improve their daily living.
The ultimate goal is to allow chronic pain patients the ability to perform their regular activities in the community. In doing so they can bolster society’s ability to provide full opportunities and appropriate supports for its pain citizens.
National Fibromyalgia & Chronic Pain Association (NFMCPA)
NFMCPA supports people with fibromyalgia and chronic pain illnesses, as well as their families and friends, by contributing to caring, professional, and community relationships. Through continuing education, networking with support groups and advocates, and affiliation with professional organizations, the members of the NFMCPA have a place to be informed, get involved, and recognize achievements.
They bring together science, patients, healthcare providers, thought leaders, advocates and Complementary/Alternative/Integrative Medicine (CAM/IM).
How this pain organization can help you
Resources – Their website is full of articles, FAQs, financial and legal information, healthcare provider directory, information on medication and mental health and counseling, disability and work issues and much more.
Community – Examples include Awareness Day (May 12), education and support groups, honoring a loved one and sharing inspirational stories.
Advocacy – Webinars, articles, FDA hearings and plenty of information on how people with fibromyalgia and their families have practiced advocacy are shared on their website.
[Related – The Power of Advocacy]
Coming together for change
Going beyond your typical organized walk, NFMCPA held a national walk to increase scientific research funding for multidisciplinary treatments for pain. The walk took place in May with the mission of increasing awareness, education, resources, and support for research in the general public, medical communities, legislators, and people affected by fibromyalgia.
Membership has its privileges
For no cost, members will receive a monthly newsletter and online access to Fibromyalgia & Chronic Pain LIFE magazine. Paid membership includes a gift subscription to the printed magazine and a tax deductible donation.
Foundation for Peripheral Neuropathy (FPN)
Overall the FPN mission is to dramatically improve the lives of people living with peripheral neuropathy (PN) by serving as the premier resource of information for patients, their families and healthcare providers, accelerating a cure for PN, funding research to find better therapies and eventually a cure and raising awareness of PN.
How this pain organization can help you
Practical information for living well – Their website provides information and resources on exercise, diet, complementary and integrative therapies including acupuncture, biofeedback, support group listing and neurology directory.
Complementary and alternative medicines (CAM) resources – FPN has connected with Natural Medicine, the authority on integrative medicine, to provide a comprehensive list of CAM resources, including food, herbs and supplements, specific medical conditions and comparative effectiveness.
Research – Information about symposiums, clinical trials, funding portfolios and news can be found on their website. FPN’s bi-annual International Research Symposium hosted specifically for academia, clinicians, industry, NIH, NCI and FDA, all who play an important role in drug discovery and who would not normally meet under one roof to discuss challenges and successes in drug development for patients suffering from neuropathic pain caused by PN.
Clinical trials – Participating in a clinical trial is an invaluable way to get involved in the pursuit of a cure for PN. For patients, new medicines offer fewer side effects, fewer hospitalizations, improved quality of life, increased productivity, and importantly, extended lives.
Support groups – FPN offers a national network of support groups that meet in person and virtually. Support groups bring together people who share a common health concern or interest. They may be formed by a lay person with the condition or by someone interested in it, such as a family member, or a healthcare professional.
Education – Their website offers plenty of up-to-date information on causes, symptoms treatments, tests, terms and resources as well as patient stories. FPN also hosts free webinars on current issues and topics of interest to the PN community.
Direct access to staff
As a special benefit, FPN provides patients and caregivers direct access to speak to staff about their specific issues by contacting FPN at firstname.lastname@example.org or 877-883-9942.
The benefits of membership
Membership options are available with additional benefits, such as webinars, printed newsletters, medication and supplement database and an interaction, nutrient depletion and effectiveness checker.
Were you aware of the many benefits of pain awareness groups? Which pain organizations have helped you personally? Please share your experiences below.