June 2014
Research News
Get Involved
Leaders Against Pain
Tips for Living Better
Advocacy Updates
 




 
APP of the Month
 

You're Invited! Save the Date and bring your questions! 
 
"When Neuropathy and Fibromyalgia Overlap" Special Guests: Dr. Frank Rice Dr. Charles Argoff

DonateNow

How do you explain chronic pain to your kids?
Elizabeth Christy's New book for children and parents  

Who has inspired you?  How?  When?  Where?
  •  

The NFMCPA would like to spotlight people who make a difference!

Please send your tribute to This email address is being protected from spambots. You need JavaScript enabled to view it.  


Looking for Fibro Facts? eyeglasses-black-and-orange-outline 100x61 Click here to learn about symptoms, diagnosis, science,  treatment ...
?
Which message should go to Congress?
1. More funding for chronic pain illnesses?
2.  More funding for fibromyalgia?
3.  Create a new National Institute of Painto centralize pain research at NIH?
Our Recommendation for
Appropriate Exercise
from
Oregon Health and Sciences University
  is
backed by 25 years
of exercise research
DVDs showing How to Safely Move and "Science of Fibromyalgia" by Dr. Robert Bennett  Find more info here
Looking for an article in an earlier newsletter?

Interested in sponsoring the  next Fibromyalgia & Chronic Pain Advocate Voice Newsletter?
Please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.

NEWS FROM THE RESEARCH FRONT
 
JAMA Clinical Review of FM by Dr. Dan Clauw 

In the April 2014 Clinical Review & Education section of the Journal of the American Medical Association (JAMA), Daniel J Clauw, MD reported on advances in fibromyalgia scientific knowledge, diagnosis and treatment modalities.  The hidden relevance is that since 2009 this is the only fibromyalgia article to be published in this journal.  In 1987 the first JAMA fibromyalgia article by Don Goldenberg, MD was published and since then only 9 other articles on FM, including Dr. Clauw's recent review, were printed in this prestigious journal.  The New England Journal of Medicine published only one FM paper (in 2010), a report on tai chi as a treatment.  Since 1987, 6,000+ FM research articles were published, but only 10 of them were accepted by JAMA and one by the New England Journal of Medicine.  Sadly, these publications are the two most important journals utilized by family practice doctors to keep them apprised of new developments in medicine.  Read more...  


25 Years of FM Diagnostic Criteria Development 
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Credible fibromyalgia (FM) research, at least in the eyes of mainstay scientific researchers, has been held back for decades for three significant reasons: (1) diagnostic criteria, (2) functionality evaluations, and (3) lack of animal models. Since an FM clinical diagnosis has been elusive and because the research community needed some way to measure symptom severity, benefit of treatment, types of symptoms, etc., the American College of Rheumatology 1990 Fibromyalgia Diagnostic Criteria was developed.  A large group of scientists from several different universities developed and published the criteria in the Journal of Rheumatology. However, these were considered research criteria and were never intended to be used as strict diagnostic criteria in clinical (physician) practices. But, through the years the ACR FM diagnostic criteria did make its way into treating doctors' offices, mostly through continuing medical education programs.  Read more... 


AAPM Calls for Insurance Payers to Cover Interdisciplinary Care  

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During their annual meeting, American Academy of Pain Medicine (AAPM) physician leaders issued a press release during their annual meeting calling for evidence-based interdisciplinary care as the gold standard to treat chronic pain and want insurance payers to step up to provide adequate coverage.

In a position paper, AAPM asked all tiers of the health-care delivery system to recognize comprehensive, interdisciplinary modalities of treatment, including cognitive behavioral (CBT), physical therapy, stress management, rehabilitation, complementary therapies, and medications that are known to be effective and safer than usual care.

"Interdisciplinary care has a significant evidence base in the treatment of chronic nonmalignant pain, which is not reflected in insurance coverage policies," said Lynn Webster, MD, President of AAPM.   Read more...  
GET INVOLVED
NFMCPA Announces Partnership with Sharecare

 

The National Fibromyalgia & Chronic Pain Association (NFMCPA) is pleased to announce their partnership with Sharecare as their fibromyalgia and chronic pain expert organization.  Created by WebMD founder Jeff Arnold and nationally recognized cardiologist and Emmy award-winning TV personality Dr. Mehmet Oz, Sharecare Inc. was launched in October 2010 to transform and simplify the online health experience for consumers, caregivers, medical and wellness experts, and providers. Sharecare allows people to ask, learn and act upon questions of health and wellness, creating an active community where knowledge is shared and put into practice-simply said, sharing care. In the last three years, the company has established over 150 meaningful partnerships with the leading associations in healthcare, ranging from the American Cancer Society to the CDC, Johns Hopkins to the American Red Cross.  Read more... 


Facebook Chat  

"When Fibromyalgia & Neuropathy Overlap"     

Wednesday, July 16th  7-8:30 PM ET
 and  are pleased to announce that we will be co-hosting a rescheduled Facebook Chat on July 16th that focuses on better understanding the diagnosis, care, and treatment of people dealing with overlapping neuropathy and fibromyalgia.
Please get your questions ready and join us. Read more...

Why Does Mommy Hurt?
New book just released!
Two years ago, a young mother had a problem.  Her son was beginning to ask questions like "why does mommy hurt?" and she didn't have the tools to explain her illness to her two-year old ... and neither did the library ... or Amazon.com ... or, apparently, anyone else!  She was shocked and disappointed to find nothing on the market written for the children of people suffering from chronic pain, and  " invisible illness" and the most common health problem in the world today.  So, she decided to write one herself!  Read more... 
LEADERS AGAINST PAIN SPOTLIGHT
 Heather Crossin lives in New Jersey with her husband and 13-year-old son. In 2007, she was forced out of the workplace and onto disability because of chronic migraines, arthritis and fibromyalgia. People tell her that she is too young to have all these health problems, but her body does not listen. She has many of hobbies - many of which she had to either give up (like skiing) or decrease the time she spends on them (like crocheting). Heather loves to read and has used her free time to read all the books she never had time for before. She also loves to do research and tries her best to keep up with the latest news regarding chronic pain and the myriad of symptoms that go along with it. 
TIPS FOR LIVING BETTER
NFMCPA Survey Responses Indicate
Self-Help Therapies Most Useful

Survey results from NFMCPA sponsored surveys over the last six months revealed what people with fibromyalgia and chronic pain illnesses personally find the most beneficial in helping relieve their symptoms.  In both the FDA Survey and the NFMCPA Community Needs Survey, it was evident that people find most of their successful treatments from alternative medicine therapies.  While medications have a valuable place in successful fibromyalgia treatment regimens, NFMCPA constituents' responses showed the same conclusion as medical professionals and researchers:  a multi-disciplinary approach utilizing alternative methods along with drug therapies and mind/relaxation techniques offers the best hope of living life better with fibromyalgia and chronic pain illnesses. The most popular four were: pacing one's activities, a hot bath in a tub, stretching and walking. Other common self-help...  Read more...   


Dr. Mark Pellegrino Offers 4 Rules from Fibronomics Program

Mark-PellegrinoResponding to your survey comments, in the upcoming Spring 2014 issue of the Fibromyalgia & Chronic Pain LIFE magazine, Dr. Mark Pellegrino, a physiatrist from Canton, Ohio, offers readers tips on how to live better with fibromyalgia.  Dr. Pellegrino has personally treated 25,000 FM patients and lived  with fibromyalgia himself since he was a child.  Here are a few of his tips for living better with fibromyalgia, including a portion of his FIBRONOMICS Program:   

"Years ago I came up with four rules to maintain favorable posture and body mechanics with fibromyalgia.  Fibronomics is defined as the art of properly manipulating our fibromyalgia body in the environment to enable completion of an activity with minimal pain.  Fibronomics can be applied to everything we do in life, no matter how simple it is.  There are four easy rules of fibronomics, and once they are learned and applied, our bodies will automatically follow them. Read more...  

Newly Diagnosed with Fibromyalgia

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Hundreds of people shared their thoughts on the when asked: 

"How would you finish this sentence?  When I was first diagnosed with FM, I wish I would have known..."  
  • how people would react with disbelief      and rejection
  • a good doctor understanding the      condition and more love and understanding from family. And more      information for them to understand the situation.
  • that no matter how awful it gets I'm      still a single mom with no help financially. Work is almost unbearable      many days. I just want to throw the towel in and quit it all.
  • how much of my 'normal life' I would      lose & how much I'd miss being able to work ... in the home & for a      paycheck.
  • to pace myself.
  • exactly what it was... and how much it      would affect my quality of life!!  Read more...  

FM Exercises Refined During
25 Years of Research at OHSU

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. 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 FM.  People with FM demonstrate the exercises.   Read more...   

ADVOCACY UPDATES
You Made May 12 Fibromyalgia Awareness Day Advocacy Successful!

P2P Opioids Workshop
Pathways to Prevention Series sponsored by the National Institutes of Health 
 

Office of Disease Prevention logo  

The Office of Disease Prevention is to be commended for developing the  Role of Opioids in Treatment of Chronic Pain Workshop on September  28-29, 2014. As a patient advocacy organization, we understand the  serious need for discussion and research on opioid medications in the  setting of chronic pain. The National Fibromyalgia & Chronic  Pain Association (NFMCPA) was surprised to see that the patient voice  was not included as a member of the working group for this important  initiative, particularly with the outcome to direct future research  priorities. The preponderance of research and dedication of  resources towards addiction over pain research is out of balance. The focus has been on  addiction to the exclusion of the needs of the people in chronic pain  overall.  Focusing on safe prescribing makes a lot of  sense. Identifying people with the potential for addiction, abuse and  diversion is important. Without a balanced approach unintended  consequences have the effect of less access to pain care and treatment  for millions of people.  Read more...  


Copyright© 2014 National Fibromyalgia & Chronic Pain Association (NFMCPA)
The National Fibromyalgia & Chronic Pain Association is a nonprofit, tax-exempt charitable organization under Section 501(c)(3) of the Internal Revenue Code. Donations are tax-deductible as allowed by law.
Disclaimer:  Please consult with your physician for medical care and treatment.The information in this newsletter and website is not a substitute for professional medical advice. 
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