fibromyalgia

  • #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.

  • Brain White Matter Abnormalities in Women with IC/BPS

    woman in pain 267x400"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.

  • FM Exercises

    stretching-exercise-OHSU-250x250
     
    Exercise and fibromyalgia – ugh!  For many people with fibromyalgia these are almost ‘fighting” words.  After all if, because of pain and fatigue, it is almost impossible to move from a chair or bed to get food or water, how in the world is a person supposed to exercise!  Such is the dilemma of people with fibromyalgia and other chronic pain conditions.  And yet, not moving ultimately causes more pain and fatigue and adds to a vicious cycle of deconditioning.  There is another word that is difficult to assimilate into a chronic pain patient’s vocabulary; especially if they were active all of their life before illness rendered them unmovable.
     
    Without moving a person’s muscles atrophy and then when they do try to walk to the mailbox, they hurt more the next day.  It is natural for a person to take warning signs being sent from their own body as clues to what they should or should not do.  For instance if they held their hand in an open flame, they would quickly remove it, because pain is the driving force of this protective response.  But in the case of fibromyalgia those warning signs are sometimes not the best choice of action.
     
    Closing down and not moving actually sets people up for a secondary pain problem: normal muscle atrophy that happens when a person is not active for as little as two weeks.  Those inactive muscles react the same as a healthy person’s who has not exercised for a period of time; when they finally do move they hurt from muscle micro-trauma caused from microscopic tears in the muscles.  The plus side for the healthy person is they will rebound quickly and after a few days of moving they will no longer hurt. 
     
    For people with fibromyalgia they get a double “whammy” when they don’t move; it is not all fibromyalgia pain, but a combination of normal exercise induced pain in conjunction with their fibromyalgia symptoms. But if the person with FM perseveres and continues to move, the muscles will become stronger and the normal exercise rebound pain will abate.  And as an added advantage they will become stronger and better able to support their bodies by conditioning their sick muscles, making them ultimately feel better with less overall pain.   
     
    The Oregon Health and Science University Fibromyalgia Research Center has worked for more than 25 years to develop better and more tolerable exercise programs for people with fibromyalgia. They are the forerunners of pushing for people with fibromyalgia to move. Through the years they have become the most successful research group in creating successful fibromyalgia exercise programs captured on DVDs.  The truly wonderful thing about their videos is that all of the people demonstrating the exercises are fibromyalgia patients. 
     
    Years ago when one of the exercise demonstrators first came to see Dr. Robert Bennett and his research group she was in a wheel chair; now she is part of the exercise video group.  The other wonderful thing about these videos is the professional fibromyalgia specific information shared by medical experts and researchers on each disk to help people live better with this illness. Through the years they have produced and updated four fibromyalgia exercise DVDs which educate fibromyalgia participants about how to correctly perform a variety of different movements including:
     
         •    Yoga and Pilates      •    Stretching and Relaxation      •    Strength and balance      •    Aerobic Exercise
     
    Find more information about each of these four DVD’s and incorporate them in to your fibromyalgia and chronic pain self-management strategies.  For more information about the Strength and Balance DVD offered on the Fibromyalgia Information Foundation web site, visit  http://www.myalgia.com/VIDEOS/Video_Introduction.htm 
     
    It is important to note that this DVD may be bought separately or as a package.
     

    Strength and Balance DVD

    1.   Test your balance and improving your posture.  Dr. Kim Jones instructs you in performing a series of balancing movements which test the major components of successful balancing (inner ear, eyes and muscles). She also demonstrates how to regain optimal postural alignment. Before beginning the exercises in this video, you'll want to be in good postural alignment, whether you are seated or standing. This will help prevent injury and unnecessary muscle fatigue.
     
    2.  Balance and Strength exercises.  Janice Hoffman, a certified clinical exercise specialist, takes 3 FM patients through a workout is divided into: 3 sections: (1) upper-body strength, (2) core (torso) strength and (3) lower-body strength and balance work. Gentle stretching for the specific muscles used during each workout section is included. Whether you are a beginner or are more advanced, this program will be useful for you. To progress, simply increase the amount of resistance, or decrease the firmness of your balance surface.
     
    3.   Balance strategies and adaptive aids.  Cinda Hugos, a physiotherapist, discusses various balance aids and the best footwear for good stability, along with strategies for navigating in crowded public locations.    
     
    4.  Education.  Dr. Robert Bennett presents a 20-minute session on the essential features of a comprehensive management program for FM patients, including the rationale for using various medications.
  • Holidays

    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.

  • National Fibromyalgia & Chronic Pain Association Launches Together Walks

    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.