Do your kids understand? Melissa Swanson released “Ravyn’s Doll” to aid parents in explaining fibromyalgia to their children. She describes the book as follows:

“All the kids in class made paper dolls to show someone they love who is hurt or sick. When it’s Ravyn’s turn to share, she shows a paper doll of her mom — and it looks like there is nothing wrong!

Ravyn teaches the class that even though her mom looks healthy, she’s not! Ravyn’s mom suffers from fibromyalgia and its evil sidekicks. Ravyn’s Doll is a simple and effective way to explain fibromyalgia to your child. In a way that is understandable to children. it shows that not all illnesses are visible and explains how living with an invisible illness affects families’ daily lives. Ravyn’s Doll describes and illustrates why mom or dad can’t do the things they used to do — things that other moms, dads or other family members can do.

Other resources within the book are internet sites and books to read to learn more about Fibromyalgia and other Invisible illnesses, such as Lupus, Lyme Disease, ME, CFS, rheumatoid arthritis, multiple sclerosis, chronic migraine, and others.”

“Ravyn’s Doll: How to explain fibromyalgia to your child,” is available now at Amazon in both paperback ($12.60) and eBook ($3.99) versions. A portion of the sale of each book will be donated to the National Fibromyalgia & Chronic Pain Association.

National Fibromyalgia & Chronic Pain Association President Jan Chambers says, “#1 Terrific Book! I love the illustrations and the story line. Ravyn's Doll helps children understand an invisible, chronic illness and gives them words to describe a complex situation when their loved one "looks so well" but is ill. Ravyn's Doll should be on every library shelf to help adults and children talk about fibromyalgia and other invisible illnesses.”

*Reprinted from Fibro Warriors ~ Living Life with permission.

About the Author: Melissa Swanson is a chronic pain patient, advocate, and author. Through her Fibro Warriors ~ Living Life Facebook page and blog, she offers positive encouragement, medical information, resources, and support to 18,000+ fibromyalgia and chronic pain patients. In addition, Melissa is a writer for ProHealth.com and the National Fibromyalgia and Chronic Pain Association's Advocate Voice newsletter. She has also served as editor and writer for Living Well with Fibromyalgia magazine.
ChronicPainDisorders.com and Healthline have both named Melissa's blog as one of the Best Fibromyalgia Blogs. Healthline says, "This Blog has just about everything you need to read on the pain and exhaustion brought on by the illness. Look for treatments, must-reads, facts, and more. This married, full-time working mom is a true warrior against the debilitations of fibro."

Melissa is a graduate of the Leaders Against Pain Scholarship Training, sponsored by the National Fibromyalgia & Chronic Pain Association, and the International Fibromyalgia Coaching Institute. She is a member of the Leaders Against Pain Action Network. Melissa works with clients as a Certified Fibromyalgia Advisor helping them learn tools to live with the chronic illness fibromyalgia. If you're looking for a cheerleader to be in your corner with a little bit of "tough love" when needed, Melissa is the one for you. She understands the struggles of trying to balance family life and work while living with the challenges of fibromyalgia and its evil sidekicks.

About the National Fibromyalgia & Chronic Pain Association: Founded in 2010, the National Fibromyalgia & Chronic Pain Association is a 501c3 organization whose mission 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 suffering with chronic pain from fibromyalgia and overlapping conditions. For more information, visit www.fibroandpain.org.

 

The NFMCPA is pleased to celebrate September as Pain Awareness Month by announcing its 5th Leaders Against Pain Training Program:

 

Dream, Believe, Lead

 

Do you dream of a better future for people with fibromyalgia (FM) and chronic pain?
Do you believe one is possible?
Will you lead with us to achieve this dream?

The National Fibromyalgia & Chronic Pain Association (NFMCPA) is hosting the 5th Leader’s Against Pain Training program November 6-9, 2012, at the Marriott Renaissance Hotel in Washington, DC. The program teaches skills for leading an effective support group and advocating on behalf of people with FM and overlapping conditions. Course presenters include Amye Leong, President and CEO of Healthy Motivation, NFMCPA Founder and President Jan Chambers, NFMCPA Vice Presidents Sharon Waldropandzand Leaders Against Pain Director Cindy Sharp. Up to 20 successful applicants will be awarded a financial scholarship to attend the successful and popular training program free.

Much like diabetes and heart disease, people with fibromyalgia, overlapping conditions, or chronic pain need to make lifestyle changes to manage their health. This empowering knowledge can lead to people requiring less medication, experiencing fewer symptoms, and improving their quality of life (BlogTalkRadio, NFMCPA, 01/13/2012). In addition, becoming an educated health consumer reduces the individual’s health care expenditures and results in fewer visits to the doctor and emergency room (US Department of Health and Human Services). “It is vital that people with fibromyalgia become better educated on how to manage their health and know where to find the best resources for treatment and understanding,” says National Fibromyalgia & Chronic Pain Association President Jan Favero Chambers. “Leaders Against Pain trains advocates to work in local communities to provide this information, raise general fibromyalgia awareness in the community and work within policymaking circles to advocate on behalf of people living with fibromyalgia. I am a Leaders Against Pain graduate, and the program gave me the start I needed for a successful career in advocacy.”

Leaders Against Pain trains FM support group leaders and advocates in media, advocacy, and leadership for working with their local support and education groups.  Development and execution of awareness events are also presented.   Leaders learn the basics of public/community relations and how to target a message for a particular audience (including legislators), including promotion of their local awareness events and how to stay on message during a media interview.

Course highlights include:

  • Leadership training skills
  • Patient access to care issues
  • Overview of current FM therapies and treatments  
  • State of FM research
  • Improving doctor/patient relationships
  • Awareness and issues surrounding FM and overlapping disorders
  • Social media training
  • Media and advocacy training (beginning and intermediate skill levels)
    • Political advocacy implementation (on Capitol Hill, letter writing campaigns, state initiatives, etc.)
  • Institute of Medicine report Relieving Pain in America:  A Blueprint for Transforming Prevention, Care, Education and Research
  • Overview of NFMCPA programs and how leaders can implement programs in their areas and become NFMCPA affiliates
  • Understanding the Leaders Against Pain Coalition

Upon completion of the training program participants will become members of the Leaders Against Pain Coalition (LAPC).  The Coalition is the advocacy arm of the National Fibromyalgia & Chronic Pain Association (NFMCPA).  The mission of the Coalition is to represent and advocate on behalf of people affected by fibromyalgia and overlapping conditions on critical issues including the right to good health and a high quality of life. The Coalition also provides Leaders the opportunity for networking, peer and NFMCPA support, and ongoing training opportunities.

In the ten months following the training, program participants will be required to attend four webinars (“in person” or archived) and launch a minimum of one program of their choosing. (A program could be a support group, letter writing campaign, awareness day activity, etc.)

Leaders Against Pain 2012 is sponsored by Purdue Pharma L.P., the Fibromyalgia Association of Michigan, the Utah Fibromyalgia Association, and Health E U Coaching.

 

The National Fibromyalgia & Chronic Pain Association was founded in 2010 by Jan Favero Chambers, who was diagnosed with fibromyalgia in 2006. The mission of the National Fibromyalgia & Chronic Pain Association is to unite the patient and healthcare community to work for a cure and improve the quality of life for people with chronic pain from fibromyalgia and overlapping conditions by having a united voice and active role in healthcare, advocacy and research.

 

SCHOLARSHIP APPLICATION RULES AND DEADLINE:

The scholarship is open to new and existing support/education group leaders & advocates in the United States. Candidates must own or have access to a computer, have internet access after the training, and be able to attend the entire program. All submissions to NFMCPA’s 2012 LAP Scholarships must be received by Wednesday, October 3, 2012, at 11:59 pm EST.  All scholarship winners will be chosen by NFMCPA’s staff and notified by email or U.S. Postal mail on or before October 5, 2012.

For application requirements and more information, go to the National Fibromyalgia & Chronic Pain Association website at www.fmcpaware.org.  Applicants may also contact NFMCPA Vice President of Education Sharon Waldrop by email:  This email address is being protected from spambots. You need JavaScript enabled to view it. or by phone:  248-885-4673.  

Michelle-Lee-200x233NFMCPA Leader Against Pain E. Michelle Lee has traveled the fibromyalgia (FM) journey for more than 20 years and had approximately 20 major surgeries due in part to FM and its associated ailments. She resides in Columbus, Ohio, where she is a well-known radio show host for Talktainmentradio and columnist. Last year Michelle advocated for FM and received the honor to carry the torch of HOPE by gaining a City of Columbus Proclamationfor May 12th recognizing it as National Fibromyalgia Awareness Day. 

Throughout the month of May, Michelle shared her message, “If you knew how dark my world was, you would wonder how I shine so brightly” to let people who are affected by FM know there is hope for a better life while living with fibromyalgia. As a trained researcher, she compiled years of recorded journaling, enlisted the support of OSU’s Dr. Kevin Hackshaw, the National Fibromyalgia & Chronic Pain Association, Victory Fitness Centers, and a multitude of local and national business owners who suffer from FM and/or have a relevant product or service to create the 2013 Columbus, Ohio FM Awareness Day activities. Her goal was to educate the public, healthcare professionals and government entities to help raise awareness so that people with FM can have access to resources necessary to be more productive citizens at home, work, and play by learning how to better cope with FM and chronic pain.

As part of her FM Awareness Day platform, Michelle designed the “Exceptions- Get Over IT Challenge” and used her local and national platform to help educate, motivate, and provide resources including but not limited to diet, exercise, and HOPE Motivation for FM and chronic pain suffers; especially entrepreneurs and small business owners who do not have health care insurance, like herself. 

The “Get Over IT Challenge” program provided guidance from medical professionals, nutritionists, exercise-certified and/or trainers, and tons of motivational methods needed to withstand the effects of FM. Lee stated, “This program and many others rely upon our ability to promote awareness having such credentials as a recognized day in cities, states, and in the nation.” When confirmed to receive the FM Proclamation, Ms. Lee said, “We must strive to continually make health practitioners aware of our plight. It is only with this recognition that we will be successful in securing research funds to pinpoint the causes of fibromyalgia, and start toward finding a cure.” 

Since last year, Michelle has not slowed down in her effort to move forward in helping others with FM. Working through Victory Fitness Centers, she gradually started to utilize their warm water pool exercise program. This type of exercise has been shown to be gentle on those with FM with not as much “pain rebound” consequence. It was slow going at first, but now Michelle is a fully ESA credentialed warm water pool instructor and has her own one-hour full body workout class that she teaches to others with FM and chronic pain conditions. But, as Michelle says, "Don’t let it fool ya, it’s a workout to make ya stronger.  We don’t just splash around.  We Get Over IT.” (See Michelle's tip for relieving shoulder pain here.) Her dedication to not only raising FM awareness but also helping others with FM is greatly appreciated by the National Fibromyalgia & Chronic Pain Association and those she serves.

Now approaching May 12th for 2014, Lee has embarked upon gaining a state of Ohio Resolution to continue the hope for awareness in Ohio and abroad.  Currently passing the Senate with a unanimous vote 30-0; SCR23 proclaiming May12th National Fibromyalgia Day in Ohio is on its way to the Ohio House with an expected positive outcome. (See Michelle’s testimony before the Senate Committee here.) Lee has also been selected to key note the 6th annual Mothers Day Brunch hosted by PriSeCreations, owner and supporter of FM, Priscilla Weeks-Sales has attended all hearings and has chosen for the brunch’s “Cause of the Year”; Fibromyalgia. Lee is heading up the 2014 Columbus, Ohio FM Awareness Day activities and is looking for all who are interested to jump on board and help bring FM Awareness. You can contact Ms. Lee at This email address is being protected from spambots. You need JavaScript enabled to view it. for more details and sponsorship information for Ohio FM Awareness 2014.

Keep posted about upcoming FM Awareness Day plans on the NFMCPA website, through Advocacy Voice Newsletters, Fibromyalgia & Chronic Pain LIFE magazine and email announcements. After all, May 12th isn’t that far away! It is never too early to get started in planning your local FM Awareness Day event. 

The NFMCPA and people with fibromyalgia and chronic pain salutes Michelle Lee for applying her special talents and skills to help raise FM Awareness and advocacy.

Leaders Against Pain

Dream, Believe, Lead was the theme chosen for the Class of 2012 Leaders Against Pain Training workshop. 

Do you dream of a life free of pain for yourself or a loved one?  Do you believe that you deserve a better quality of life?  Do you have hope that someone can effectively lead the way when it comes to sharing the needs of the fibromyalgia patient?

Nineteen participants, chosen from across the United States and Mexico for their dedication and passion to helping others, met in Washington, D. C. this past November to become  advocates for  people with fibromyalgia and chronic pain illnesses. They  attended workshop classes designed to teach leadership and media skills and facilitating support groups in their communities. 

Realizing that knowledge is the first step  toward empowerment, trainees were updated on the barriers and current critical issues facing patients with regard to access to health care, funding for research, political policies, and bills in the pipeline that will affect those for whom they will advocate.

Leaders received tips and tools too develop successful media relationships, practiced interview skills, and crafted legislative “elevator speeches” after which they received constructive feedback for personalizing their messages for effectiveness.

Being inspired and motivated by the passion of their instructors who personify advocacy as “leadership from the heart,” the participants realized the impact that their advocacy and support group leadership efforts will have.  Passionate leadership can affect, not only the lives of people living with fibromyalgia and chronic pain, but also the lives of their families, friends, co-workers and even healthcare providers.

After classes Thursday evening, leaders toured our beautiful national capitol under the night lights with their new friends. On Friday the newly certified Leaders Against Pain were challenged to utilize their recently acquired   knowledge, skills, and attitudes in separate meetings with legislative representatives from their individual states.

The LAP Class of 2012 meets regularly keep abreast of the current access to health care issues and discuss action plans to objectively represent the fibromyalgia community.  They  have committed to share their diverse skills and talents toward projects and events  that will contribute to the strength of the Leaders Against Pain Coalition and its mission to communicate a unified message and strong voice for the importance of education, advocacy and research.

Written by Cindy Sharp, Leaders Against Pain Coalition Director

Leader Again Pain Spotlight:  Donna Marsh

Donna Marsh is a National Fibromyalgia & Chronic Pain Leader Against Pain who currently lives in Nashville, Tenn. (population 600,000+); but in just a few days she will move about 60 miles east to Baxter (pop. 1,300) to be closer to her parents.  Donna's 20-year-old son will remain in Nashville, while her older son, who soon hits the big 3-0, lives in Portland, Ore., with his beautiful fiancée.  That means it will just be her and, in her words, the “Hounds of Hell,” a little diva of a Corgi and one horse of a Weimaraner, off on this new adventure.
 
When Donna was 10, she had a doozey of a bicycle wreck.  Although she lost a few layers of skin off her knees and could barely walk for days after, it was determined that no true damage had been sustained, other than to her pride, and she’d soon be back to normal.  Normal never returned.
 
She soon began to experience repeated bouts of fatigue, wide-spread body pain, and swollen glands.  She was tested for every medical condition that could be responsible for her illness. She was sent to Cincinnati Children’s Hospital to see specialists, but no medical indications were found that accounted for her health problems.
 
Donna moved with her family to Tennessee, and her mother continued to be her greatest champion through her teenage years.  She took Donna to various doctors as different symptoms developed or as flares put her in bed for hours, days, and even weeks at a time.  These new doctors didn’t take Donna or her illness seriously, however, and she was told it was growing pains or called lazy, a malingerer, a hysterical female, and more.
 
Through the years that followed Donna learned to hide her problems well.  She rarely complained, and most people didn’t know the levels of pain and other issues she lived with daily.  She married and divorced twice, had two boys, went to college, and enjoyed a career as an associate producer for a cable television network.  She coped by learning to pace and take care of herself.  Good nutrition, stress management, rest, and maintaining a positive attitude were crucial to her regimen.
 
That all changed in 2007 when Donna's health deteriorated.  She was frequently hospitalized and on medical leave from work.  Her illness affected her career, marriage and more.  During this time she saw a rheumatologist which became not only one of the worst doctor’s visits she had until then, but also the best.  That rheumatologist very coldly pushed on her tender points, declared that she had fibromyalgia, and wrote out a prescription without uttering another word.  As he turned to leave, she finally worked up enough nerve to ask if there was anything else she could do.  He tossed “Find someone to talk to” over his shoulder as he walked out of the room, and that’s what gave her the idea for Fibro Friends, the support group she created and still leads today.
 
Through Fibro Friends Donna learned much from the experiences and wisdom of others while coming to value their support above all.  As Donna shares, “Just knowing that someone understands has often made all the difference.”  The group also gave her a purpose after she was downsized from her job in 2008.  Donna floundered for a bit, experienced depression, crocheted a lot of hats, and managed to finally finish the book she had worked on for so long – Nashville Haunted Handbook, but she was still lost.  That’s when she consciously turned what energy she did have into raising awareness of fibromyalgia.
 
In 2012 Donna was chosen by the National Fibromyalgia & Chronic Pain Association to attend the Leaders Against Pain (LAP) training program in Washington, DC.  Her LAP education and training helped Donna pull off a free Tennessee fibromyalgia awareness concert in 2013.  This year to raise fibromyalgia awareness, she has small speaking engagements in the Middle Tennessee region. With her current energy levels and other health issues she believes this is an easier task to accomplish, while at the same time possibly reaching more people in the long run.  For Donna, just as it did for so many years, it continues to be about “attitude.”  She has learned that she can LIVE with fibromyalgia, as long as she paces herself, watches her diet, and copes with the stresses of life.