NFMCPA 's Winter Issue Coming Soon!
Timely tips, research updates, in-depth interviews and more.
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Planning a Successful Holiday
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As a Gift to You
For a limited time starting December 21st , you can download the Kindle version for free this Saturday and Sunday beginning at 12:00 AM until midnight of December 22nd, Pacific Time.
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FDA Postpones Public Meeting
Sadly, the long awaited Food and Drug Administration meeting on December 10, 2013, was postponed because of inclement weather. It was not good news for many people with fibromyalgia who had paid for transportation and lodging to attend and represent the greater FM community at this important FDA patient meeting.
Besides the financial strain of this event, it was physically difficult for some to make the journey.
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Stories Wanted
Do you have a positive, inspirational story?
Sharing how you have learned to cope with fibromyalgia and chronic pain inspires others who are suffering by giving them hope.
The techniques and strategies you use in your daily life could possibly save the life of someone filled with despair and hopelessness.
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We are working on a story about different therapies for fibromyalgia and chronic pain--"hands on" therapies like massage or physical therapy, and other types of therapy such as cognitive-behavioral therapy, guided imagery, and counseling. If you have a story you'd like to share, please email us.
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Happy Holidays to You
"Happy holiday, happy holiday! While the merry bells keep ringing May your ev'ry wish come true." These lyrics from the classic film "Holiday Inn" are everybody's ideal for the holiday season-but for many people, the celebrations at the end of the year combine into a major stressor,
the trigger for a flare-up. Here we offer you some tips from people
with FM or a chronic pain condition, suggesting ways you can survive the holidays happily-and healthily.
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 2013 Year in Review
What a year 2013 has been! The National Fibromyalgia & Chronic Pain Association works hard for you and the millions of people suffering from fibromyalgia and chronic pain. Did you know the president of the NFMCPA was in Washington, D.C., over half a dozen times in 2013 representing you at official government and medical meetings? These self- funded trips to D.C. guaranteed patient representation during critical policy making meetings.
Read more...
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Leaders Against Pain Profiles
Each month we will highlight one of the NFMCPA Leaders Against Pain (LAP) in the new Leaders Against Pain Profile section of the Advocate Voice Newsletter. To kick-off the start of this new section we are highlighting Jan Chambers, President and Founder of NFMCPA and a trained LAP. Like more than 100,000 NFMCPA constituents and millions of other Americans, she has experienced her own on-going fibromyalgia journey. Jan shares her story about the creation and purpose of the NFMCPA to help others.
Jan's Story:
My journey began on December 22, 2005, at 11:35 AM when I awoke in a recovery room with intense and unbearable body-wide pain after undergoing a hysterectomy. I soon learned that I was intolerant of morphine, codeine and all other opioid medications. Several weeks afterward during follow-up appointments at my doctor's office to find the cause for my relentless pain and aches, a physician's assistant asked if my marriage was okay. She suggested that I was only seeking attention and that the pain was psychological. I was shocked that my increasing pains and debilitating symptoms were not being taken seriously.
Read more...
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News from the Research Front
Tonix Pharmaceuticals Testing
New Sublingual Medication for Fibromyalgia
A sublingual, under-the-tongue, cyclobenzaprine (Flexeril) tablet for the treatment of fibromyalgia is being developed by Tonix Pharmaceuticals. A new more efficient delivery system compared to the pill form of cyclobenzaprine (CBP), this muscle relaxant medication that has been a mainstay of fibromyalgia treatment for more than twenty years.
Read more...
Second study on Blood Test for FM
Reported at the 2013 American College of Rheumatology meeting
On July, 8, 2012, information about a diagnostic blood test for fibromyalgia that was scientifically researched at the University of Illinois at Chicago was published in BCM Clinical Pathology. The creator of this blood test, Dr. Bruce Gillis, was also an author on the paper and helped oversee the study at the University of Illinois. In this first study, a total of 110 fibromyalgia patients and 91 control subjects were recruited. Cytokines in stimulated peripheral blood mononuclear cells (PBCM) cultures were significantly increased as compared to non-stimulated PBCM samples.
Rational Biological Source of FM Pain in Skin
As anyone who has fibromyalgia knows, the widespread deep pain and fatigue can be very debilitating. There are indications that the source of pain and fatigue is due to hypersensitivity of nerve cells within the central nervous system (called central sensitization), but why this may be occurring is unknown. Otherwise, no specific pathology has been identified that could be the source of the problem, which in itself can fuel self doubts.
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What is that you hear?
It is deafeningly loud!
It sounds like... silence.
That is what patients, healthcare providers, people in the general public, government agencies, industry, and especially the researchers hear when the word "fibromyalgia" is said. Who needs to be involved to increase the awareness of fibromyalgia? YOU. What is it? How does it affect people's lives? How do you get it? How do you diagnose it? How do you treat it? Who treats it? Where do you go for help? Who is funding scientific research? Where is the voice to carry the message and to stimulate interest and to speak on behalf of millions of people with fibromyalgia? The National Fibromyalgia & Chronic Pain Association (NFMCPA) is that voice. The NFMCPA is the organization tracking what is happening in research, access to care, and offers resources to answer all of these questions.
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Sharpening Fibromyalgia Diagnosis and Management Skills: Improving the Patient Experience
A C.M.E. Program for Healthcare Professionals
This past summer Paradigm Medical Education, an award winning continuing medical education company, invited Jan Chambers, President of the NFMCPA and Rae Marie Gleason, Medical Education & Research Director for the NFMCPA to participate in a unique healthcare professional program. As part of the faculty, Jan was the patient-advocate presenter.
As the Scientific Director for the program, Rae created the intent of the program including the slides and program outline. Paradigm's vision was to have a highly regarded fibromyalgia researcher, Dr. Leslie Arnold; a family practice fibromyalgia expert, Dr. Bill
McCarberg; a fibromyalgia patient, Annette Schwind; and a
fibromyalgia national patient organization advocate, Jan Chambers, sit at a table and through dialogue present a comprehensive educational opportunity to teach HCP's how to best diagnose and treat fibromyalgia.
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We are listening
Several NFMCPA website visitors have requested information about fibro-friendly doctors in their locations.
Have you found a great resource or information that you think might help others? Please send us an email with your information so that we can place it here and share. Email Now!
Another question concerned starting a fibromyalgia and/or chronic pain support group.
The NFMCPA is excited to announce the launch of their new Support Group Manual at the beginning of 2014. It contains everything you need to know about starting and maintaining a support group. Watch for January email announcements about this great resource.
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Inspirational Story Submission
Following is a short inspirational story sent to the NFMCPA.
Although Charlene's story is one filled with pain and obstacles, it is also one filled with determination. She has found a way that works for her to allow happiness to still be part of each day
Charlene's Story:
In addition to fibromyalgia, I have degenerative disk disease, 2 herniated disks, lost a kidney to cancer last November and just found out 3 weeks ago that I now have lymphoma. I used to look at older folks and say "I'll never live that way, all stooped over or constantly complaining about pain".
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