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Support the NFMCPA a 501 C (3) Non-ProfitEncourage friends and family to make a donation in honor of a loved one to help the NFMCPA continue bringing news, advocating on national levels for access to care, and support to improve the quality of life for everyone affected by chronic pain conditions like fibromyalgia.
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Holiday Travel ?
Top 10 Travel Tips
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Apple Newsstand
is a built-in application on Apple Inc. iOS devices the iPad, iPhone and iPod touch. It is dedicated to downloading and displaying digital versions of newspapers and magazines.
(Not to be confused with Newsstand, the online print magazine retailer.)
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Upcoming issue of
Feature Stories
Dr. Kim Jones on Mindfulness
Dr. Mark Pellegrino
on Adapting
Special Issue on
Complementary and Alternative Therapies
Small Fiber Neuropathy Research Update
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Open discussions about real life happen on our Facebook Page where 29,000+ people connect.
You said:
"Thank you so much for this! I am at a place in my journey where I am dealing with a lot of unhappy feelings, and I feel like a lot of people, including my counselor, don't want me to deal with them. It IS necessary to take time to feel negative/unhappy emotions and not just gloss over them and say things like, "Don't think of yourself as disabled, think of yourself as differently labeled." Or "Don't dwell on the things you've given up,think about the things you can do now." My illness has taken things I love to do away from me, and that is really hard, but I need to process it to be able to move on. I think society in general doesn't want to deal with unpleasant emotions and situations dealing with illness, everyone is supposed to "fight for a cure" or be positive, but there is a place and time for that."
"Today feels good because life is more comfortable as we see ourselves in each other and share love and acceptance. And for now, that matters."
"Part of living with a chronic pain illness is understanding that sometimes it's good to cry. Learning to live a new way of life includes unexpected challenges and different goals. Naturally, this adaptation process can include grieving."
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Thank you!!
for the powerful stories and responses to the National Pain Medication Survey sponsored by the NFMCPA. Almost 6,000 people started the survey; 1,000 stories were submitted. The results are being written for publication now and will be shared with you soon.
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Recent Milestones for the NFMCPA
The NFMCPA spent the summer building new relationships and resources in order to better serve the needs of our constituents with FM and chronic pain conditions. Following is a quick review of some of the highlights of these amazing collaborations. Read more...
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CPR Communications, Laura Carabello, Principle
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Barbara Kornblau
JD, OTR/L, FAOTA, DAAPM, ABDA, CCM, CDMS
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Sharecare - a health and wellness social media platform connecting people with top-ranking experts
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Nxtbook and Fibromyalgia & Chronic Pain LIFE magazine combined forces on Apple Newsstand.
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And, there is more . . .
Watch for next month's Advocate Voice Newsletter about how the NFMCPA is working to represent your interests and wishes through advocacy and awareness.
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SELF-MANAGEMENT CHRONIC PAIN PROGRAMS - OVERVIEW
People living with fibromyalgia and other chronic pain illnesses face daily challenges of managing their symptoms, modifying roles and responsibilities, and coping with the negative emotional consequences of pain. One of the most difficult problems is the sense of losing control of one's life. Pain not only impacts the physical dimension, it also impacts a person's ability to make plans for the next day, take part in children's activities or share in the social aspects of life. A goal of self-management interventions is to help people regain an element of control; in other words, to learn how to keep pain from dictating how a person lives their life. There are a variety of self-management interventions that teach strategies to meet these challenges and build participants' self-efficacy for their use. Interventions can be delivered in individual, group and online formats for a variety of different pain conditions. Supporting evidence shows the benefit of self-management techniques in improving pain, mental health and health-related quality of life outcomes. Rae Marie Gleason worked with Paradigm Communication, a continuing medical education company, to develop an educational program for family care physicians and nurse practitioners covering. Read more...
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PCORI: What is it? How does it help?
People with fibromyalgia and chronic pain can play an important role as advocates for better diagnosis, treatment, outcomes, and quality of life by getting involved in the Patient-Centered Outcomes Research Institute (PCORI). Created by the Patient Protection and Affordable Care Act, PCORI was established to insure patients' and caregivers' voices are included in developing and carrying out research. PCORI's mission states that it "helps people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community." Read more...
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Does Fibromyalgia Impact Your Daily Life?
- Do the medications work?
- Other treatments you use?
The Food and Drug Administration (FDA) is looking for patient perspectives on the impact of fibromyalgia (FM) on daily life as well as the available therapies for fibromyalgia as part of its Patient-Focused Drug Development Initiative. Fibromyalgia was one of 20 diseases chosen for the three-year initiative (PDUFA V). Participants can attend in person or by webcast. It is vitally important that the fibromyalgia community be well represented at this meeting. By offering comments and sharing their perspectives in person and by submitting written comments, people with FM can help influence the FDA's future regulatory decisions about approved and new FM treatments for more than pain. Don't miss this opportunity to shape the future of FM treatment! Read more...
Your comments are needed, only 110 comments were received by the FDA so far.
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Inspirational Story Submission
Jane Patterson
In 2005 a rheumatologist (with minimal testing) diagnosed me with Sjogren's Syndrome, partially because he was determined to bring forth this condition to the public eye. To me, it felt like a square peg in a round hole. I went outside my insurance network to seek a second opinion, and I was accepted into a clinical trial at UCSF. After extensive testing, I did not have all the markers needed for a Sjogren's Syndrome diagnosis. I was relieved and disappointed at the same time. If it wasn't this, then what was it? Read more...
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Webinars Scheduled for November 2013
The upcoming December 10th FDA meeting provides a unique historical opportunity to create a change in how fibromyalgia is understood and viewed by the FDA. NFMCPA webinars can help you find your best advocacy voice for advancement in research and new treatments addressing pain and additional symptoms.
"Understanding the Drug Development Overview"
Tuesday, November 5, 2013
"Preparing Your Public Testimony"
Tuesday, November 12, 2013
"How is Safety and Effectiveness Evaluated?"
Tuesday, November 19, 2013
Come join us. Your voice matters.
The webinars are easy to access, and we look forward to preparing with you for this important meeting.
For more information including the FDA meeting topics and questions, how to register to attend in person, by live webcast, or to submit comments, click here or go to our website for specific information. www.fmcpaware.org
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FDA Recommends Stricter Hydrocodone Medication Scheduling - National Pain Medication Survey Sheds Light on Possible Impact on Patients
On October 24th, the FDA recommended stricter controls on
hydrocodone medications, including moving it to a Schedule 2 status. It is expected the DEA will concur. Many people know these medications by name (Vicodin, Vicodin ES, Anexsia, Lortab, Lorcet, Lorcet Plus, Norco, Zydone). By rescheduling hydrocodone medications, refills without a new prescription would be forbidden, as would faxed prescriptions and those called in by phone. Only written prescriptions from a doctor would be allowed. In a move by the FDA that many people hoped would not happen, people with chronic pain have been dealt a strong blow. Increased effort to address addiction and abuse of medications containing opioids is needed, as well as significantly more research to find appropriate and effective chronic pain treatments. Read more...
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Prescription Opiate Medications for People in Pain - A Different Perspective
Opioid Refugees: Patients Adrift in Search of Pain Relief
A video by Steven Passik, PhD
At the 2013 PAINWeek meeting, Steven Passik, PhD gave the keynote address on the disparity of pain medications in the treatment of chronic pain conditions and the burden placed on patients seeking pain relief.
Dr. Passik and MediCom Worldwide have given permission for the NFMCPA to post a follow-up video to his Key Note Address titled, "Opioid Refugees: Patients Adrift in Search of Pain Relief" on its website. In the video Dr. Passik discusses ways to address both epidemic prescription drug abuse and the epidemic of chronic pain through education and through engaging the pain community. Watch Video...
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Call in the Dogs 
In memory of one of our favorite researchers, Dr. Dawn A. Marcus, who passed away from complications of a heart attack.
If you have fibromyalgia, you know there's no quick fix--no pills, procedures, or therapy that quickly makes symptoms disappear. Fibromyalgia is a condition that relies heavily on combining many types of therapy together, including medications, exercise, nutritional and non-drug therapies. Most people with fibromyalgia use complementary and alternative that are designed to supplement and boost the benefits from traditional medicine.
A survey from the Mayo Clinic found that the most commonly used for fibromyalgia are exercise, spiritual healing, massage, chiropractic treatment and supplements. Another therapy is animal-assisted therapy. Read more...
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