chronic pain

  • #ISpeakForPain Blitz - 10 Days of Advocacy

    Your voice matters, and you can make a difference!

    People making decisions that significantly affect your quality of life (federal officials, legislators and policy makers) need to hear from you. Joining the #ISpeakForPain and telling your story can affect their policy decisions and new areas of research, as well as making chronic pain visible. The National Fibromyalgia & Chronic Pain Association and pain patient organizations were recently asked to reach out to people with pain and their families directly to ask about their experiences. Your voice matters in making a difference. 

    The NFMCPA is also raising support of the National Pain Strategy and chronic pain as a major national health issue. On June 22nd, we will launch 10 days of the #ISpeakForPain blitz, and we've designed simple, free ways YOU can be heard. 

    You will learn how to participate in this campaign effectively, how to blitz the Internet with the voices of chronic pain, and how to advocate for yourself and chronic pain patients across the country in incredibly easy, accessible ways. A full schedule of events is available below. A new activity will go live with working links each day. Make sure to use #ISpeakForPain in all of your social media posts related to the campaign to signal that you're speaking up for more research and improved healthcare for pain.

    Save the date! On July 13th, a Twitter Storm of chronic pain voices is happening, and we need YOU to be a part of it and/or help promote it. The drive for 100,000 signatures on the White House Petition to support the National Pain Strategy will be launched then.

    The 6 goals of the #ISpeakForPain are:

    1. Increase awareness and education of pain
    2. Give chronic pain patients a way to share their story about how chronic pain affects their lives
    3. Unify advocacy efforts of people living with pain to reduce stigma associated with chronic pain
    4. 100,000 signatures on the White House Petition supporting the National Pain Strategy (being launched July 13, 2016)
    5. Gather information to present to lawmakers in a portfolio format along with letters from their constituents
    6. Get the National Pain Strategy implemented and funded for more research and improved healthcare for pain

    Together, we speak for pain! #ISpeakForPain


    Day #1

    Activity: Learn about the #ISpeakForPain Campaign!

    Take Action!

    Day #2

    Activity: Learn about the National Pain Strategy

    Take Action!

    • Learn even more about the National Pain Strategy
    • Click here to download and share the National Pain Strategy Infographic
    • Click here to sign up for legislative e-alerts on the White House Petition and NPS Congressional Letters

    Day #3

    Activity: Create your #ISpeakForPain sign and post a selfie on your social channels! Tag the NFMCPA.

    Take Action!

    • Click here for examples of signs and photos.
    • Be sure to put #ISpeakForPain in your caption and tag the NFMCPA!
    • Follow the NFMCPA on Twitter.
    • Follow the NFMCPA on Instagram.
    • Follow the NFMCPA on Facebook.

    Day #4

    Activity: Sign your support on letters to the Senate and the House asking them to support the National Pain Strategy.

    Take Action!

    • Click here to read and sign the letter to the Senate.
    • Click here to read and sign the letter to the House.

    Day #5

    Activity: Prepare for the July 13th #ISpeakForPain Twitter Flare!

    Take Action!

    • Click here to for Twitter tips and training.
    • Click here to follow @FibroAndPain and we'll follow you back!
    • Click here to share your Twitter handle in a Facebook comment and follow each other.
    • Click here to join the Twitter Thuderclap.
    • Mark July 13th on your calendar to participate in the #ISpeakForPain Twitter Flare - When we all speak on the same day, our voices are amplified.

    Day #6

    Activity: Share a video of why you speak for pain with #ISpeakForPain on Facebook, Twitter, Instagram and/or YouTube.

    Take Action!

    • Click here to follow the National Fibromyalgia & Chronic Pain Association on YouTube.
    • Click here to see #ISpeakForPain videos.

    Day #7

    Activity: Get social and speak for pain on Facebook!

    Take Action!

    • Take a selfie the the #ISpeakForPain poster and share on social media with #ISpeakForPain
    • Click here to download the #ISpeakForPain Cover Photo
    • Record a video of why you speak for pain on your phone and share on social media with #ISpeakForPain.
    • Click here to submit your video to the NFMCPA. 
      Click here to see the #ISpeakForPain videos you are sharing!

    Day #8

    Activity: Tell your story!

    Take Action!

    • Click here to tell your story to your legislators on yourvoicematters.info
    • Write a blog post about why you speak for pain.
    • Click here to find #ISpeakForPain blog posts and comment.
    • Tweet links to your favorite #ISpeakForPain blog posts

    Day #9

    Activity: Arts and Crafts Therapy

    Take Action!

    • Share your art on social media with #ISpeakForPain - photographs, coloring pages, thread arts, t-shirts, or anything that inspires you.
    • Click here to download the #ISpeakForPain coloring page.
    • Click here to submit your #ISpeakForPain coloring page to the NFMCPA.

    Day #10

    Activity: #ISpeakForPain Round-Up

    Take Action!

    • Click here to review photos, artwork, selfies, stories and posts with #ISpeakForPain. See how many voices made a difference!
    • Mark your calendars for July 13 #ISpeakForPain Twitter Flare to launch the White House petition.
  • 2015 Treating & Preventing Chronic Pain Conference Report

    TAP Conference LogoThe inaugural Treating & Preventing Chronic Pain Conference held in Arlington, Virginia, on October 8-10, 2015, was successful in bringing an innovative approach to merging health professionals with patients in an educational environment that offered a respectful exchange of questions and answers between the two groups. The TAP Conference was presented by the National Fibromyalgia & Chronic Pain Association in partnership with the International Myopain Society.  The outstanding and varied array of speakers and their presentations allowed people with fibromyalgia and chronic pain to learn more about their conditions.  Scientific research and information about helpful resources and treatment modalities that can be accessed through the Internet and local practitioners broadened participants’ practical tools.

    This CME event educated clinicians and researchers about a variety of treatment options and approaches that will ultimately help them provide better service to patients with these conditions.


    At the opening reception on Thursday evening, presenters, patients and members of the Chronic Pain Round Table Forum co-mingled.  Earlier that afternoon, 28 stakeholders from industry, government agencies (FDA, NIAMS, NCCIH and PCORI), researchers and clinicians, along with patient advocates, shared information concerning research funding, new research possibilities, better access to care for patients and a variety of other issues that transcended each of the groups.  The intent is for this venue of stakeholders to meet on an annual basis to discuss updates and positive movements toward rectifying and addressing some of the agenda items discussed at the forum.

     
    The TAP Conference was attended by over 300 participants.  The international streaming video audience spanned 25 countries including the USA, Canada, UK, Israel, Denmark, Japan, Saudi, Ukraine, Mexico, Czech Republic, New Zealand, France, Spain, Belgium, Portugal, Finland, Thailand, Moldova, Slovakia, Iraq, Italy, Germany, Argentina and Qatar.  All participants (in person and virtually) were able to ask questions of the speakers, exchange chats and Tweets with friends and other online audience members.  Volunteer Leaders AGainst Pain from across the U.S. attended and assisted on many levels for the TAP Conference to run smoothly.  The IMS and NFMCPA leadership were very appreciative of their support.

    2015TAP Team PicOn Friday morning the keynote address was given by world renowned fibromyalgia and chronic pain expert and researcher Dr. Daniel Clauw (University of Michigan), who discussed centralized pain and its role in chronic pain conditions.  Dr, Lynn Webster, a well-known pain specialist, gave a report on the NFMCPA survey “Hydrocodone Rescheduling: The First 100 Days” and the benefits of marijuana in the treatment of pain.

     
    As the morning progressed audience members learned about a variety of fibromyalgia and chronic pain instigators and resources that might help control relevant symptoms. Sleep; cervical spine conditions; myofascial pain; exercise; integrative medicine techniques including mindfulness and CBT; self-management including yoga and mindful movement; occupational therapy techniques; and myofascial pain self-management were all covered. Each presentation segment was followed by a question-and-answer period.  It was a full day of sharing and learning valuable information.  Dr. Lynn Webster was the featured Friday dinner guest speaker, sharing highlights about his new book, The Painful Truth, followed by a documentary movie trailer by the same name.  In December, Dr. Webster initiatied an international chronic pain campaign to educate the public, medical communities and others about the impact that chronic pain has on the lives of people affected by its unrelenting assault. His moving presentation  brought people in the room closer together and was a wonderful ending to a successful day.


    On Saturday morning, the conference took a little different approach.  Scientific researcher Dr. Frank Rice presented his information about small fiber neuropathy in fibromyalgia.  Neurologist Dr. Mike Sorrell discussed myofascial medicine.  German doctor and researcher Dr. Wolfgang Bauermeister followed with his presentation about novel imaging of trigger points, which he feels is the major cause of musculoskeletal pain.  Dr. James Fricton, president of the International Myopain Society, rounded out the morning presentations by talking about preventing chronic pain both in the future and in the present for people who are already affected.

     
    The variety of Saturday afternoon workshops included Dr. Andrew Holman, a Seattle area rheumatologist, who presented information from his study looking at fibromyalgia and PC3 positional cervical cord compression diagnostic MRI information.  A physical therapy approach to PC3 treatment was taught by Sue Horton, PT.  Dr. Cory Kingston, a chiropractor, discussed a technique that helps reduce stretch and pressure on the spinal cord in the neck and works to correct lordosis (curvature of the neck).  


    Dr. Bauermeister delivered a two-hour workshop on identifying trigger points with ultrasound elastography and the benefits of different approaches to treatment.  A variety of additional concurrent workshops provided a wide breadth of treatment options.  Drs. Kim Jones and Kathleen Holton instructed about exercise and nutrition to reduce chronic pain.  Dr. William Collinge unveiled his AwareHealth System, an online Personal Health Informatics program to reduce FM and chronic pain symptoms.  The workshop by Barbara Kornblau, JD, OT about Reasonable Accommodation – based on ADA Regulations empowered people to know their rights.

     
    Additional workshops:  Physical therapist Mary Biancalana taught Myofascial pain self-management techniques.  Professional make-up artist Rachel Perrin gave a demonstration on beauty care and “liking who you see in the mirror.”  Popular children’s author and blogger Elizabeth Christy spoke about her book, Why Does Mommy Hurt?   Dr. Jim Fricton conducted a workshop on his on-line Preventing Chronic Pain Campaign and explained to audience members how to access and use this information.


    Throughout two days of presentations and workshops, resources and information were provided that could be incorporated into each participant’s symptom management program.  The post-conference streaming videos of the presentations and workshops are available for $15 at paintap.org/buy-live-stream.


    Click here to review the entire TAP Chronic Pain program including bios for each speaker.