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| Volume 2, Newsletter #5 |
August 2012
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In this Issue
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Thank you to our sponsors and donors for helping us keep information free and available for the public. The NFMCPA is a not-for-profit charitable 501c3 organization.Please consider a tax-deductible donation today to continue the advocacy, education, and awareness for our community. |
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Sponsor Message
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Importance of Medication Adherence: Prescription Resources are Available
Nearly three out of four Americans report that they do not always take their medicine as directed. Some never fill their prescriptions or don’t follow the instructions, skipping doses or stopping the medicine early. When people don’t adhere to their medications, especially if they suffer chronic conditions, serious health consequences and significant costs can result. For those without healthcare coverage, medication adherence is particularly challenging, and even more so in a tough economy.
Read more here |
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Contact Us
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National Fibromyalgia &
Chronic Pain Association
31 Federal Avenue
801.200.3627
contact@fmcpaware.org
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For advertising and
sponsorship:
Jan Chambers
info@fmcpaware.org
National Fibromyalgia & Chronic Pain Association
801.200.3627
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FM Mom of the Year
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Congratulations to Caren Pierson!
The National Fibromyalgia & Chronic Pain Association congratulates Caren Pierson of Wichita, Kansas, for being chosen as the FM MOM of the Year 2012. Her daughter, Anya Pierson, wrote the winning essay nominating her mother in this year’s competition. This year’s essays also included nominations from the international community. The FM MOM of the Year Committee selected five finalist essays, and public voting took place online from April 27-May 4.
To recognize the difficulties faced by mothers affected by fibromyalgia, and to commemorate Mother’s Day on May 13 and National Fibromyalgia Awareness Day on May 12, the NFMCPA highlighted essays submitted discussing the challenges, strategies, and successes co-occurring with parenting and fibromyalgia.
Caren won Goodnighties patented sleepwear and a one-year subscription to Fibromyalgia & Chronic Pain LIFE magazine. To read Anya's essay, click here.
Congratulations, also, to Martha Hall of Vero Beach, Florida, who received the second place prize of a Topricin “Women’s Active Lifestyle Gift Set.” Click here for her essay!
Congratulations to Darlene Romero of Santa Fe, New Mexico. She received the third place price of a Massage Envy gift card. Click here for her son John's essay.
Thank you to all of our inspiring essay contibutors! We appreciated being able to share five of their essays full of courage, admiration, love, and hope. We look forward to essays for next year's FM Mom of the Year.
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Pain Reduction and Growth Hormone
Treatment Research
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Through the years, functional defects in growth hormone (GH) secretion and its efficacy as a complementary treatment have been suggested for fibromyalgia by a variety of world renowned fibromyalgia researchers. A recently published study in the July 2012 issue of Pain details a Spanish research group’s investigation of the efficacy and safety of low-dose GH as an add-on therapy in patients with both severe FM and low insulin-like growth factor 1 levels. The results of this largest and longest placebo-controlled trial performed in MF (NCT00933686), demonstrated that the addition of GH to the standard treatment for fibromyalgia is effective in reducing pain, showing sustained action over time.
Read more...
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New FDA Research Shows Effects
on Brain of Chronic Pain
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At the May FDA Workshop on Pain at the NIH campus in Bethesda, MD, researcher Dr. Sean Mackey said: "We're all losing about a half percent of our grey matter per year after about the age of 30. But if you've got chronic low back pain, the numbers are about 5 and one-half percent or so of premature grey matter loss, which works out to about a decade of grey matter loss as a consequence of just having chronic pain. And the majority of those losses were found to be in the prefrontal cortical regions, regions of the brain involved with executive functioning. And so maybe many of the patients that we see with cognitive dysfunction, we always attribute it to a mood disorder of the medications. Maybe it's due to the chronic pain itself." (To see the complete presentation, click here and then select 7th Annual NIH Pain Consortium, Day 3, page 67.)
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Coming Soon!
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Exciting news! As the focus on self-management becomes a larger part of healthcare providers' management plans for people living with a chronic pain illness, the NFMCPA is developing tools to help you. The first of six tools is simplifying financial budgeting and saving you money on prescriptions and everyday purchases. We understand, for instance, that the paperwork to keep track of medical expenses for tax records can be a bit overwhelming and that getting the most out of every dollar matters. A company we're working with has made a generous offer. It involves a new initiative that will help ease your concerns on effectively managing your finances and at the same time help the NFMCPA. We aren't able to reveal the details just yet, but look for an announcement in our next monthly issue!
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NFMCPA at PAINWeek
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September 5-8, 2012 - Las Vegas
The NFMCPA is proud to be a partner with PAINWeek by providing educational information to attendees and visitors in the exhibit hall. Stop by our booth and say hello. Hope to see you there!
"I have attended many medical conferences in my 34 years of practice, some as an attendee and others as a speaker. This is my third year at PAINWeek and I must say that this conference is the BEST run that I have ever had the pleasure to attend. It runs like the proverbial 'well-oiled machine.' There are no glitches. The staff is overwhelmingly helpful, the core content terrific and varied, and the facility terrific! I would wholeheartedly recommend PAINWeek for all medical practitioners who treat or are in contact with individuals with acute or chronic pain."
Philip Getson, DO
Assistant Professor Neurology
Drexel University College of Medicine
For more information, go to www.painweek.com )
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May/June Fibromyalgia-Chronic Pain LIFE™ Magazine
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May/June 2012 issue of Fibromyalgia & Chronic Pain LIFE magazine available in print and free online. Features:
- Special Report: Dr. Daniel Clauw's testimony to US Senate HELP Committee on Fibromyalgia (causes included)
- Tips for Parenting with Chronic Illness
- Considering Side Effects of Antibiotic Family of Fluoroquinolones
- Who Should Treat FM? Rheumatologists and/or Neurologists?
Click here for free digital version .
Click here to order a print issue .
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When is it "Just" Fibromyalgia?
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When to dig a little deeper for a hidden diagnosis? Are you hearing "It's not a big deal. It's just part of your fibromyalgia, you're just stressed?" Dr. Deborah Barrett suggests:
- Don't overlook conditions that may be more serious. Don't lose sight of the fact that not everything can be explained by fibromyalgia.
- Have a really good sense of your baseline. Don't overreact when things are a little different but don't doubt yourself, either--you are the expert on your body.
- Have a good relationship with your doctor, and don't hesitate to make an appointment. A good doctor listens attentively, does not dismiss complaints, and helps you brainstorm when appropriate.
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IOM Report: Relieving Pain in America--A Blueprint
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"Pain affects the lives of more than a hundred million Americans, making its
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control of enormous value to individuals and society. To reduce the impact of pain and the resultant suffering will require a transformation in how pain is perceived and judged both by people with chronic pain and by the health care providers who help care for them. The overarching goal of this tranformation should be gaining a better understanding of pain of all types and improving efforts to prevent, assess, and treat pain." (IOM Report)
The NFMCPA applauds the efforts of researchers and clinicians to respond to the findings and recommendations of this IOM report. We also add a suggestion that you ask your physician about his/her most recent training in pain management/treatment. The report points out that 100 million Americans live in pain because current treatments are inadequate. One in three citizens, this does not include people in the military, prison, long-term care facilities, or children. The NFMCPA calls for Congress to invest in increased funding for chronic pain research to learn how to reduce suffering and overall costs.
(Find the complete report at: http://www.iom.edu/Reports/2011/Relieving-Pain-in-America-A-Blueprint-for-Transforming-Prevention-Care-Education-Research.aspx/.)
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The mission of the National Fibromyalgia & Chronic Pain Association (NFMCPA) is to build a united patient and medical community to create a strong voice and organizational base to educate and execute advocacy programs regarding access to care, scientific research, diagnosis and treatment for people with fibromyalgia and overlapping conditions. On our website you can find: support groups around the world, information about overlapping conditions, research, archived newsletters and press releases, and support.
Please consult with your physician for medical care and treatment. The information in this newsletter is not a substitute for professional medical, legal, or financial advice. The publisher takes great efforts to ensure the accuracy of information herein.
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