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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:
Activity: Learn about the #ISpeakForPain Campaign!
Activity: Learn about the National Pain Strategy
Activity: Create your #ISpeakForPain sign and post a selfie on your social channels! Tag the NFMCPA.
Activity: Sign your support on letters to the Senate and the House asking them to support the National Pain Strategy.
Activity: Prepare for the July 13th #ISpeakForPain Twitter Flare!
Activity: Share a video of why you speak for pain with #ISpeakForPain on Facebook, Twitter, Instagram and/or YouTube.
Activity: Get social and speak for pain on Facebook!
Activity: Tell your story!
Activity: Arts and Crafts Therapy
Activity: #ISpeakForPain Round-Up
The 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.
On 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.
"Women with IC/BPS exhibited numerous white matter abnormalities that correlated with severity of pain, urinary symptoms, and impaired quality of life."1
Particular brain anatomical and functional abnormalities could aid in identifying several chronic pain conditions in females.
Using multi-center neuroimaging, researchers have associated interstitial cystitis (IC) and bladder pain syndrome (BPS) in women with irregularities in brain white matter. The Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network neuroimaging study further showed these white matter abnormalities positively corresponded with increased pain, urinary symptoms and debilitated quality of life.
Researchers studied 34 women with these conditions and 32 healthy women. Each received questionnaires concerning daily function, mood and pain to evaluate these factors. Diffusion tensor imaging (DTI) was used in assessing white matter microstructure in the brain, because it exemplified fractional anisotropy (FA), the directional water flow along axons. Areas of the brain that aligned with the parameters of the study were also studied for sex and syndrome dependence.
Many white matter abnormalities were apparent in women suffering from IC/BPS, and these conditions were characterized by regional increases and decreases of directional water flow along axons. These increases and decreases in white matter integrity are correlated with the severity in IC/BPS symptoms, such as bladder pain, and suggest neuropathological contributions to chronic urological pelvic pain.
1. Farmer M, Huang L, Martucci K, Yang C, et al. Brain white matter abnormalities in female interstitial cystitis/bladder pain syndrome: a MAPP NEtwork neuroimaging study. J Urol 2015; 194(1): 118-126.
OHSU Fibromyalgia Exercise DVDs - Directed by Dr. Robert Bennett and Dr. Kim Dupree-Jones. For over 25 years the Oregon Health and Science University Fibromyalgia Research Group has developed better and more tolerable exercise programs for people with fibromyalgia. People with FM demonstrate the exercises.
Living well with extra holiday preparations and activities means planning ahead. Helpful insights and tips on how to thrive and enjoy are shared by experts and people with chronic pain conditions who are seasoned with experience.
SALT LAKE CITY, Utah – On February 22, President Barack Obama formally recognized pain patients’ experiences and opposed legislation imposing limits on opioid prescribing. “Pain is real,” Obama said, in declining to endorse a sweeping proposal by some governors to put limits on the number of opioid painkillers that doctors can prescribe, saying such a policy would be unfair to rural Americans who don't have easy access to pain medication or addiction treatment programs. "If we go to the doctors right now and say 'Don't overprescribe' without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we're not going to solve the problem," Obama said. "Because the pain is real. The mental illness is real. In some cases, addiction is already out there. In some cases these are underserved communities when it comes to the number of doctors and nurses and practitioners."
“One hundred million American adults live with the disease of chronic pain, and many of them rely on a combination of therapies to function,” said Jan Chambers, president of the National Fibromyalgia & Chronic Pain Association (NFMCPA). “That combination treatment often includes strong pain medications.”
“Rather than viewing pain as simply a symptom of trauma, infection, inflammation, or surgery, we now see it as a discrete disease entity - one that fundamentally alters the entire nervous system,” report Stanford University researchers. To increase scientific research funding for multidisciplinary treatments for pain and to raise awareness of the challenges people with chronic pain face, the NFMCPA is sponsoring Together Walks in May across the United States. These local events celebrate May 12 Fibromyalgia Awareness Day to recognize what patients have overcome, to remember those lost to the illness, and to honor people who have fought or are fighting fibromyalgia and chronic pain.
"If we go to the doctors right now and say 'Don't overprescribe' without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we're not going to solve the problem,” said Obama.
Together Walks are a step toward a solution for chronic pain. The events unite communities to make a difference, raise awareness, advocate for better access to care, and encourage and fund research that leads to better treatments. An estimated 10 million Americans, 2 to 4 percent of population, have FM – a common illness involving long-term, body-wide pain, fatigue, sleep disturbances, memory problems and impaired functionality – as a primary diagnosis.
NFMCPA calls upon individuals living with chronic pain and their friends, family and caregivers to participate. The organization invites everyone to attend the Virtual Together Walk or to participate live in Richmond, Virginia; Kissimmee and Coral Springs, Florida; Nashville, Tennessee; Portland, Washington; and Louisville, Kentucky. For more information, please visit togetherwalks.org or register at crowdrise.com/togetherwalks.
About the National Fibromyalgia & Chronic Pain Association (NFMCPA)
NFMCPA, a not-for-profit organization, supports individuals living with fibromyalgia and other chronic pain illnesses by raising awareness through community outreach, education, advocacy and networking.
Learn more: http://togetherwalks.org/, www.facebook.com/nfmcpa, www.twitter.com/togetherwalks.