Donate $12 for
May 12, 2014
Awareness Day and help ensure the success of this year's events and programs. Your contribution is the first letter of "CARE" and is needed to make the programs represented by the other three letters successful. Together we make a difference!
| Please take the Community Needs Survey to let the NFMCPA know your preferences.
|Still not too late to submit your comments to FDA about how FM symptoms impact your life. Click here for easy to follow instructions.
|NEWS FROM THE RESEARCH FRONT
The Second Chance Drug Now Available as Evzio
The Food and Drug Administration approved Naloxone (also called Narcan) on April 3, 3014, as the antidote to use to reverse an opioid overdose, available as a prescription. It has been used to reverse opioid reactions in hospitals and by EMT's for decades. Naloxone works by neutralizing opioids in a person's system and by helping the lungs function, allowing people to breathe. It only works if a person has opioids in his or her system; it doesn't work on other types of medications. It has been found to be safe for almost everyone and has been used all over the world to effectively reverse the effects of opioid overdose. The Centers for Disease Control and Prevention (CDC) reports that more than 10,000 reversals of overdoses with administration of Naloxone by non-medical bystanders have been recorded! Read more...
Fibromyalgia: A Perfect Example of Centralized Pain
|Dr. Daniel Clauw
In an earlier article, Dr. Clauw explained that in fibromyalgia the heightened state of pain transmission may also be attributed to increases in pro-nociceptive neurotransmitters such as glutamate and Substance P. He acknowledges that although the overlapping symptomatology between fibromyalgia and related disorders may present diagnostic challenges, proper examination and observation can help physicians make an accurate diagnosis. In the past few years, a greatly improved understanding of the mechanism underlying fibromyalgia and related spectrum of diseases has fostered rapid advances in the therapy of these chronic pain disorders by both pharmacologic and nonpharmacologic interventions. Read more...
Results of the Access to Pain Medication Survey Printed in Practical Pain Management Journal
The NFMCPA often requests participation in research surveys, and we are dedicated to reporting the results of those surveys back to our constituents. In June of 2013 we developed and posted the Access to Pain Medication Survey on Survey Monkey. A total of 5,159 respondents with either fibromyalgia or other types of chronic pain logged on to the website link and consented to take part in the survey. Ages ranged from 19 to 85, with the youngest and oldest in the cohort most likely to report having been denied a fulfillment of their prescription
|MAY 12th & NATIONAL EVENTS
May 12th National Highlights
Events for May 12th National Fibromyalgia Awareness Day occur throughout the month of May. The 2014 theme - "C.A.R.E. & Make Fibromyalgia Visible" - encourages people to Contribute, Advocate, participate in Research, and Educate others about fibromyalgia. People with FM and their loved ones host community events - picnics, dinners, exhibit tables, walks, Zumbathons, and other creative ways - to help other people know about this invisible illness. Hearing people say, "But you look so good," underscores the importance of speaking up about chronic pain illnesses. To find events state by state, click here.
(Back to top)
FDA FM Public Patient-Focused Meeting
"What is your thinking about the risk/benefit profile? How much risk are you willing to tolerate? No drug is completely safe. You all recognize that, but there is a scale there, and we need to hear from you how much risk you're willing to tolerate," said Director Dr. Bob Rappaport. "Dr. Rappaport touched on a number of topics that are critical for our decision making at CDER. This is why we have patient-focused drug discussions. You talk about the severity of the condition and provide an analysis of current treatment options. That information is very important in setting the context in which we make our decisions. Our decisions are not made in a vacuum. Read more...
|Announcing State Fibromyalgia & Chronic Pain Network Facebook Pages!
Community Needs Survey
The NFMCPA wants to hear your opinions. We hope you'll have a few minutes to take our Community Needs Survey. At the NFMCPA, improving how we provide information and support you're looking for matters. And the best way to discover that is to ask the expert: You!
From your suggestions, the newsletter now focuses more on research, and support group materials are in development for easy access on the website. What's next? We appreciate your insightful answers to our Community Needs Survey to guide our projects. With respect for your time, the survey is designed to be easy to answer.
Thanks! You're important to us, and together we can make a difference. To take the survey click here.
Looking for State Advocates
Pain App Pilot Project
Are you an app user and would like to help in the beta stages of a new Pain App? The production team is in the second stages of app development and needs to iron out a few wrinkles with 300 members of our community. Sounds like fun! Please click here to participate. Thanks!
|LEADERS AGAINST PAIN SPOTLIGHT
|Sharon is the Vice President of Education for the National Fibromyalgia & Chronic Pain Association (NFMCPA) and the
Founder and President of the Fibromyalgia Association of Michigan (FAM). Founded in 1997--just one year after Sharon was diagnosed with FM--FAM grew out of the Fibromyalgia Support & Education Group at St. John Macomb Oakland Hospital in Warren (Detroit suburb), Michigan. Originally developed under the guidance of the Arthritis Foundation, in 2003 she incorporated the group into the non-profit volunteer-run organization FAM. Sharon has a degree in Public Relations with a public relations/marketing career spanning over 20 years.
Sharon lives in Royal Oak, Michigan, and enjoys spending time with her husband Mark and two boys who are eight and ten years old. Their favorite activity together is traveling. Read more...
Relationships and Dating
Relationships prior to fibromyalgia involved who I was as a working woman, a community activist, and a "type A," goal-oriented person. My friends were fellow business owners, clients, and high energy exercise buddies. As my condition deteriorated and I sold my business, my relationships with everyone in my life changed. Everyone I knew was affected by my new lack of energy and brain fog. Medications that I took changed my personality. Some days I was very depressed and moody, while other times I appeared well, but was still experiencing flu-like pain throughout my body. My immediate family had to learn how to take care of many of the tasks that I used to do, such as shopping, cleaning, or organizing vacations. Read more...
Two to Tango
by Robin Warshaw from the National Women's Health Resource Center's e-newsletter, HealthyWomen Take 10
You're sitting on the cold table in the medical examining room. You've been staring at the walls for what seems like eons. Finally, your health care professional enters, flips open your chart, asks some "yes or no" questions, examines you quickly, writes a few notes and is gone again. You get dressed and leave. You and your medical professional (doctor, nurse-practitioner or nurse) have just missed an important opportunity to safeguard and improve your health. Because the two of you are partners in your care, or should be, you both need to participate actively in that relationship. Read more...
Fibromyalgia Impact on Relationships
Doctors can spend a lot of time asking people about fibromyalgia-what are your symptoms, how's your sleep, does fibro affect doing household chores or work outside the home, does fibro keep you from attending social functions? An area, however, that's often neglected is how fibro affects your connections with the most important people in your life-your partner or spouse, children, and close friends. So we decided to ask-does fibro affect your relationships and how? We asked, you answered, and here are the results which were published in the medical journal Musculoskeletal Care. Read more...
You Are Not Alone in Your Pain
More than 100 million American adults suffer daily chronic pain. That's 1 in 3, which is epidemic by anyone's standards. The Institute of Medicine's blue ribbon Committee on Advancing Pain Research, Care and Education issued what is unquestionably the most comprehensive report on pain in America ever produced. Its findings and recommendations are dramatic and unequivocal. Read more...
Bill of Rights for People w/Chronic Pain
At the NFMCPA our advocacy for policy concerns center on broad topics such as political, government and legislative issues that impact quality of care and the right to adequate pain treatment for millions of people afflicted with fibromyalgia and chronic pain illnesses. Self-advocacy, on the other hand, centers on the individual with health-related issues that can often hamper their access to care, including a timely diagnosis and better treatment modalities. This article is meant to offer information about how a person with chronic pain (or a parent of a child with chronic pain) can learn to speak out in order to encourage the medical community and their personal doctors to hear their needs and Read more...
In early March, the National Fibromyalgia & Chronic Pain Association came together with 12 other U.S. patient advocacy organizations in a historical meeting to discuss pain and how to unite our organizational voices. We jointly decided to support the National Pain Strategy being developed by the IPRCC (Interagency Pain Research Coordinating Committee), which will be submitted to the U.S. Health and Human Services in June 2014, followed by a public comment period. In preparation of garnering broad public support and a united voice to let Congress and HHS know change is needed and demanded in how pain is treated, diagnosed, and researched, these four principles were the agreed upon by the presidents of the 13 patient advocacy organizations.
1. Chronic pain is a real and complex disease that may exist by itself or be linked with other medical conditions.
2. Chronic pain is an unrecognized and under resourced public health crisis with devastating personal and economic impact.
3. Effective pain care requires access to a wide range of treatment options.
4. Allowing people to suffer with unmanaged pain is immoral and unethical.
NIAMS Meeting about FM and Chronic Pain
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Meeting March 27, 2014, Bethesda, Maryland
The NFMCPA recently met with Dr. Stephen I. Katz, Director of NIAMS, and additional directors within NIAMS. The NFMCPA was updated about the status of fibromyalgia (FM) NIH funded research and then offered information to NIAMS about the FM and chronic pain community and some of the bigger challenges being faced by people with FM and chronic pain in general. Dr. Katz assured Jan and Rae that the NIH is funding FM-specific scientific studies, including one on cognitive behavior therapy and another on TENS therapy being done by Leslie Crofford, MD at Vanderbilt University in Tennessee. Read more...
SWHR President, Phyllis Greenberger
According to the Society for Women's Health Research (SWHR), women, minorities and the elderly should be informed when they are using something that has not been sufficiently tested on them. On April 1, 2014, during a hearing at the Food and Drug Administration (FDA) headquarters near Washington, D.C., SWHR Read more...