California Bill Limiting ‘Step Therapy’ Clears First Policy Committee

29 Apr

Last June 2010, the National Fibromyalgia Association urged patients in California to write their legislative officials to support the passage of a bill which would limit the practice by insurance companies known as “step therapy” or “fail first,” where patients have to take up to five older, less expensive medicines before they gain access to the treatment initially prescribed by their doctor. (“Patients respond to National Fibromyalgia Association’s Call to Action urging end to unethical practice of “Step Therapy”)

The practice of step therapy denies patients access to critical medication for Californians suffering from fibromyalgia, neuropathy, multiple sclerosis, arthritis, cancer, and diabetes-related pain, among many other painful conditions.

On April 26, 2011, California Step Therapy (aka, “fail first”) Bill, AB 369, passed the Assembly Health Committee on an 11-5 vote despite heavy opposition from the health insurance lobby. The bill is now headed to the Assembly Appropriations Committee. There was bipartisan support for the bill in the Assembly Health Committee.

If the bill passes, it will be an important milestone for pain patients, not just in California, but in other states where similar types of policies are pending.

We would like to congratulate For Grace, the Bill’s major sponsor, for their hard work in making sure that the patients’ care are put “back in the hands of physicians who are in the best position of knowing the medical history and needs of pain patients.”

If you would like to support AB 369, send your letter to:

Assemblymember Jared Huffman
State Capitol, Room 4139
Sacramento, CA 95814
Fax: 916-319-2106
Email: debra.gravert@asm.ca.gov

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Through the Years: The NFA and National Fibromyalgia Awareness Day

25 Apr

Since its inception in 1997, the National Fibromyalgia Association (NFA) has been the organization leading the call for increased recognition of fibromyalgia. In honor of National Fibromyalgia Awareness Day commemorated each May 12th, the NFA has staged groundbreaking national and international events in an effort to increase awareness of chronic pain illnesses including fibromyalgia. Awareness Day seeks to help patients and organizations educate the general public, healthcare professionals, government officials, and legislative bodies.

THE RESULTS:

With the ongoing support and cooperation of the NFA’s corporate sponsors and nationwide network of Support Groups, National Fibromyalgia Awareness Day has become one of the most successful outreach campaigns in terms of media exposure and raising general awareness.

Support Group Leaders and their members disseminate the NFA’s Public Service Announcements, posters, banners and publications to members of their community and local media. Support Groups also organize picnics, seminars, lectures, fashion shows, meetings and Open House activities for this special day. As a result, hundreds of articles on National Fibromyalgia Awareness Day have been covered by the media, generating millions of media impressions. As part of the NFA’s Proclamation campaign, Support Group leaders request and receive proclamations from their local and state officials.

Here are just some of the NFA’s most recent Awareness Day campaigns:


2006 - "But, You Don't Look Sick!"

2006 - “But You Don’t Look Sick: The Invisible Pain of Fibromyalgia”
This campaign aimed to raise awareness of fibromyalgia as a real illness, and to inform people that, despite the lack of outward, physical signs of fibromyalgia symptoms, people with fibromyalgia do indeed experience intense physical suffering from this oftentimes debilitating illness.


2007 - “Fibromyalgia in Focus”

2007 - “Fibromyalgia in Focus”
Recognizing the significance of bringing public awareness through broadcast mediums, the NFA and Trillusion Media, makers of the groundbreaking documentary film “Living with Fibromyalgia,” partnered together to coordinate screenings across the country. “Living with Fibromyalgia” is the first documentary film to explore the most intimate feelings and life-altering experiences of people living with FM.


2008 - "Caring by Sharing" and WALK of FAME

2008
“Caring by Sharing” and Inaugural Walk of F.A.M.E.  (Fibromyalgia Awareness Means Everything)
The nationwide, multi-faceted campaign provided three different opportunities for support group leaders, advocates, patients, caregivers, healthcare providers and the FM community as a whole to express their support for the cause by sharing the PATH, YOUR TIME, or FM INFORMATION. This was also the year for the NFA’s inaugural WALK of F.A.M.E., a run/walk and health expo held near NFA’s corporate headquarters in Orange County, California. Similar walks were held throughout the country.

2009 - "Fibromyalgia Affects Everyone"

2009
“Fibromyalgia Affects Everyone”
The campaign focused on the far-reaching effects of fibromyalgia—from broken lives to the economic costs to patients and society. This year also marked the NFA’s Inaugural “Lights of Hope” Candlelight Observance, which followed a brief walk with over 100 local support group leaders and members around the perimeter of the capitol building in Sacramento, California. “Lights of Hope” aimed to honor the 10 million men, women and children in the United States who are affected by fibromyalgia. At the culmination of the walk, the participants “lit” ten large cranberry-colored candles, each candle representing 1 million people with fibromyalgia. In addition, more than 800 smaller white and yellow candles were also lit. The candles had been requested by patients and their family and friends who are currently homebound to be lit on their behalf at the Candlelight Observance. Finally, the walkers read aloud the names of more than 800 people with fibromyalgia who took part “Fibromyalgia Affects Everyone.”

2010 - "Make Fibromyalgia Visible"

2010
“Make Fibromyalgia Visible”
Over 700 people turned out for the NFA’s National Fibromyalgia Awareness Day held at California State University, Fullerton. The all-day event included the NFA’s 3rd Annual 1K and 5K Walk of F.A.M.E. and an evening concert by R&B singer Tony Terry, whose wife, LaRondra, has fibromyalgia. Terry debuted “Remember the Love,” (formerly called “Vigil Song”), and performed along with Pasquale Talarico, who wrote the song which was inspired by his mother and fibromyalgia sufferer, Phyllis Talarico. “Remember the Love” was part of the event’s closing candle lighting ceremony.

2011 - "Walk to CURE FM"

For 2011, the NFA is proud to support the Awareness Day campaign efforts of the National Fibromyalgia & Chronic Pain Association. Their inaugural theme is ‘WALK TO CURE FM.” For more information on how you may get involved, please visit their website at www.fmcpaware.org

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Letter from Rae Marie Gleason, Executive Director for the NFA

5 Apr

Rae Marie Gleason, NFA Executive Director

Dear NFA Supporters,

As the Executive Director for the National Fibromyalgia Association (NFA) I would like to take a few minutes and introduce myself to many of you who do not know my name or my accomplishments on behalf of millions of people with fibromyalgia (FM).  In the spring of 1992 I interviewed for a research secretarial job in Salem, Oregon. Jack Scott a successful Oregon businessman, whose wife had been recently diagnosed with fibromyalgia (FM), was looking for someone who could help them find answers and treatment options.  I had never heard of FM but as Mr. Scott described his wife’s symptoms and the frustrations they had encountered trying to find satisfactory medical treatment and recognition of the disorder, I realized this illness is what my mother had suffered with for many years. I could still remember her calling for me in the mornings when I lived at home to come and lift her arms off the bed so she could get up and get ready to go to her job at a local restaurant. She was a widow and in the early 1950s there were very few jobs available for women, but she had managed to land a position as a dishwasher and she supplemented her pay by cleaning apartments – including being on her hands and knees with a razor blade to strip the wax from hardwood floors.  She also sat in restaurant walk-in coolers to peel potatoes because they stayed fresher that way – and the coldness made her hurt from the top of her head to the bottom of her feet. At the time of my interview with Mr. Scott my mom was in her mid 80s, diagnosed with Parkinson’s disease and living in a nursing home.  When I visited her and asked how she was feeling, she would say, “Oh, fine – if I just didn’t hurt all over”.   She passed away in 1994 from complications resulting from a broken hip; and I now believe the inadequate pain treatment they gave her at the nursing home (Tylenol) probably helped with her demise. At the conclusion of my interview I told Mr. Scott that if he needed someone to get on a soap box – I could do that and for the next 14 years we were partners in raising awareness, securing money for research and educating healthcare professionals about FM including how to make a diagnosis and how to better treat this chronic pain condition.

With Jack I helped create the National Fibromyalgia Research Association (NFRA) a 501 (c) 3 nonprofit organization and eventually I became its Executive Director.  During the ensuing years I organized and presented five international fibromyalgia researchers’ symposiums which helped promote diverse scientific thought in the development of new approaches to FM treatment and diagnosis. I also developed physician educational handout materials and distributed them at annual national medical meetings including: the American College of Rheumatology, American Neurological Association, the Congress of Neurological Surgeons, the American Neurological Surgeons, the American Pain Society, the American Academy of Pain Management, the International Myopain Society and many other organizational gatherings. Through the years I personally placed more than 45,000 FM education folders into the hands of healthcare professionals.  My other NFRA accomplishments included participation in six National Institutes of Health workshops and coalition meetings; working with Presbyterian Health Care to organize and present a fibromyalgia researchers symposium in Charlotte, NC; and working in conjunction with the Chicago Institute of Neurosurgery and Neuroresearch to present a fibromyalgia educational meeting for healthcare professionals in Chicago. In June, 2003, I was appointed as a fibromyalgia Federal Drug and Alcohol (FDA) patient representative.  While at the NFRA we funded more than $400,000 in FM scientific research and encouraged new researchers to adopt FM as their illness to study.

In April of 2007 I joined Lynne Matallana at the National Fibromyalgia Association (NFA) in Anaheim, California.  I oversee the medical education and scientific research departments and I have been instrumental in helping to develop advocacy programs as well as supervising the day to day operations of the organization.  In 2010 I worked with Lynne to launch the NFA Leaders Coalition in order to assure better access to care for people with FM and to raise one, concerted voice to be heard by government agencies, corporations and the medical community.

Currently, I serve on the editorial board and am head of the Fibromyalgia Department for the Practical Pain Management journal and I sit on the advisory panel for Health Points a quarterly printed resource for fibromyalgia, CFIDS, arthritis and chronic pain, published by To Your Health.  I also served on the board of the Fibromyalgia Information Foundation located in Portland, Oregon as the head of Public Relations. In June 2009, I was part of a panel made up of researchers, doctors and patient advocacy representatives that worked on Contemporary Management Strategies for Fibromyalgia, which resulted in a white paper report that was published in The American Journal of Managed Care.

Since 2008 I have partnered with more than a dozen medical education companies to develop and promote fibromyalgia and chronic pain continuing medical education (CME) programs. Several university medical schools have been the accreditation partners on these programs including:  Johns Hopkins School of Medicine, the University of Michigan, the University of Wisconsin and Einstein University.  My program responsibilities include working to create needs assessments, helping with program development and review and inviting and securing the medical faculties for different venues.  The audiences for these CME programs include: primary care physicians, neurologists, rheumatologists, gynecologists, psychiatrists, nurses and nurse practitioners, physician assistants, psychologists, and physical therapists.  In 2009 at my direction we successfully launched the Fibromyalgia Healthcare Professional website where online FM CME programs are housed.  I helped develop several CME programs with Pain Educators for PAINWeek, an annual meeting held in September in Las Vegas. At the NFA we are dedicated to making certain that doctors and other healthcare professionals get the best and most comprehensive FM education possible.  By being part of the creation of these CME programs we help assure that this legacy persists.

As the NFA continues its journey I look forward to helping promote FM advocacy, research and physician and patient education.  I hope that my efforts will help make a difference in the lives of people who live in chronic pain and that someday, better diagnostic tools will be developed and new treatment modalities will be created that will truly make a positive difference in the lives of everyone I serve.

Sincerely,

Rae Marie Gleason

NFA Executive Director

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LAP Spotlight: Namita Gandhi featured in “Discovery Health CME”

18 Feb

 

Click on image to view segment (#3)

In May 2008, Namita Gandhi, a member of the National Fibromyalgia Association’s Leaders Against Pain (LAP) Coalition, was featured on Discovery Health CME for their segment on fibromyalgia: Fibromyalgia: From Diagnosis to Treatment Featuring Namita Gandhi and the MoveBeyondPain Program

 

Gandhi, who has participated in the Leaders Against Pain Media and Advocacy training seminar since its inception in 2004, said the training she received from the program proved invaluable during the two days of intense interviewing and filming at her home and office in Corvalis, Oregon.

“When you open your whole life and your home to television cameras, it can be overwhelming at times,” said Gandhi, who was diagnosed with fibromyalgia in 1998. “But, all in all, it was a very positive experience for me.

“Thanks to the media trainers and the skills I learned at the Leaders seminar really helped me be prepared and know what to expect. I was able to answer the questions with confidence and I was able to be myself.”

Gandhi is a practicing clinical exercise physiologist, and founding president of the Integrative Movement Clinic, Inc. She is also the innovator of the revolutionary MoveBeyondPain® program, and serves on the Oregon Pain Management Commission, and the Arthritis Action Plan Coalition.

 

Leaders Against Pain Spotlight: Jan Favero Chambers

10 Feb

Jan Favero Chambers: "The Leaders Against Pain program was a divine intervention!"

For our first Leaders Against Pain feature, we are proud to feature Jan Favero Chambers.

Jan credits the NFA’s Leaders Against Pain program for “changing her life” and jump starting her public advocacy efforts. After attending LAP in 2007 and 2008, Chambers founded the Center for Understanding, Research, & Education of Fibromyalgia (CURE FM). In 2009, under the direction of the NFA’s Executive Leadership she helped to co-found the NFA Leaders Coalition, which is a national collaboration of support group and patient advocates who work towards bringing awareness, policy change and helping with access to care for fibromyalgia.

A mother of five from Logan, Utah who was bedridden for 16 months and was diagnosed with fibromyalgia in 2006, Jan was also recently appointed by Senator Orrin Hatch to work with the Pain Care Forum, a professional organization representing hundreds of pain associations nationwide.

Jan has lobbied in Washington, D.C. for fibromyalgia and chronic pain research; coordinated the annual Fibromyalgia Walk of FAME in Utah; and made numerous media appearances talking about fibromyalgia, including a feature in the Herald Journal and radio interviews on KVNU.

FibroBlog sat down with Jan recently to talk about her remarkable journey on “the path of hope.” Here’s what she had to say:

When did you first start having symptoms of fibromyalgia?
In December 2005, I woke up from hysterectomy surgery and my world changed. I had electrifying, shocking pain going through my body and my left leg was numb. I kept saying, “something is terribly wrong,” but my doctors told me it was just the effects from anesthesia. They kept me for several days in the hospital. When I went home, I was hurting everywhere. I curled up on the couch, and I stayed on that couch for 16 months. I had heart irregularities, metabolic syndrome and cognitive thinking problems, and three kinds of migraine headaches.

I had so much pain that nobody could touch me. I slept with 7 or 8 pillows to keep my legs and arms from touching each other. I didn’t sleep, just waiting for the hours to pass. Later, we would find out that this was all part of fibromyalgia symptoms; I had been in five auto accidents in my life, and then the surgery pushed me over the edge.  It was literally the first of many roller coaster rides.

“Nobody can have that many things wrong with them!”
I can’t count how many physicians I went to. They couldn’t figure out what was wrong with me. I typed up a two-page, single-spaced list of problems that had been developing  for the past year. They told me to see a psychologist. They told me “nobody can have that many things wrong with them!” They also told me, “We can’t address all these problems; it would take up all our time!”

I’ve been going to one doctor’s office for almost 25 years, and still one physician assistant asked me, “What’s wrong with you, Jan? Why are you suddenly seeking all this attention?” They actually put that in my medical records: “seeking attention.”

I was spending all this money on doctors, and they were just telling me to rest, relax and go see a psychologist! I did not understand what psychosomatic illness meant, which is what doctors told me I had. I was so crushed. I told them, “You’re wrong about me!”

I felt completely misunderstood and rejected by the medical community. Every day got more painful, and I was afraid that it would never end.  I kept thinking that a body cannot experience so many pains.  I wanted to give up, many times. My daughter was 12 at the time, and I just didn’t feel like it was fair to leave her alone. She was our youngest. I thought about my husband: If I die, if I take my life, or if I find a way to get out of this mess, he doesn’t deserve to have to rebuild his life. It felt wrong for me to do that to him. Those were the only two things that kept me focused once in a while.

Diagnosis: fibromyalgia
I took countless blood tests, urine tests, and had MRIs, ultrasounds, regular CT and radioactive scans on all parts of my body. I lost 75 pounds. Later, tests fit the profile for MS, but it wasn’t MS. Other pre-diagnoses included lymphoma and myasthenia gravis. I was eventually diagnosed with concurrent hyper- and hypo- thyroid syndrome (Graves and Hashimotos). My internist finally said to me: The only thing we haven’t checked out is fibromyalgia. I thought “what is fibromyalgia?”

On my first visit to the rheumatologist, he stopped me 3 or 4 minutes after I started explaining my symptoms. He said, “You have fibromyalgia.”

After my diagnosis in November, I began researching about fibromyalgia on the Internet. But, I had so much brain fog that I didn’t know how to separate anecdotal stuff from scientific stuff. At that time, my daughter was a second-year medical student at the University of Utah, and she told me about a doctor who would be speaking about fibromyalgia at the university. A light clicked on, and I realized that somebody was doing research and had an idea on what to do for this illness.

I attended the OFFER (Organization for Fatigue & Fibromyalgia Education Research) conference in May 2007. That’s the first time I heard Lynne Matallana speak, and the first time I heard about the National Fibromyalgia Association. She mentioned the NFA’s Leaders Against Pain program. I thought to myself, “These people have information, and I want to know everything they know.”

I applied to the Leaders program and got accepted to attend the program in Washington D.C. that August. But, I had two major surgeries for thyroid cancer scheduled for the last week of July and first week of August. The Leaders program was literally the next week! I was determined to go. My husband and son traveled with me to get me to D.C. I still had bandages on my neck when I arrived!

Leaders Against Pain: “A divine intervention”
When I left LAP, I felt there had been so much divine intervention to get me from being ready to “check out” to feeling a part of a community that understood what all this was about.  When I got home with my renewed lease on life and determination, I found ways  that helped me to get better.  As I started to get well, I wanted to create my own community, in my own area and share any resource that ever came my way with other people.

On October 13, 2007, I had the first Utah Fibromyalgia  Association meeting. We met in our local police department conference room. They had the most comfortable chairs I could find in town. I put up balloons and a hand-made poster out on the street, placed a community ad in the newspaper. That was the beginning!

But, I felt that I needed more training, so the following year, 2008, I applied for the Leaders program again. At that time, I didn’t know that I was already on a short list to be considered to be a member of the NFA Leaders Coalition Executive Committee.

In 2008, I founded the Center for Understanding, Research & Education of Fibromyalgia (CURE FM) because I wanted to get science, proven treatments, and patients together.

I was also recently appointed by Senator Orrin Hatch to work with the Pain Care Forum, which is a professional organization representing hundreds of pain associations nationwide. I serve on a sub committee for training and education. I recognized that no one else was representing FM on a national level in response to the National Pain Care Policy Act of 2009 which became law in March of 2010.

I take this responsibility very seriously and appreciate the ideas of thought leaders in the field so that fibromyalgia has a unified voice.

New Section: “Leaders Against Pain Spotlight”

9 Feb

Partial members of participants of the first Leaders Against Pain program 2005

In 2005, the National Fibromyalgia Association held its first “Leaders Against Pain (LAP)” advocacy and media training seminar in Orange County, California.

The one of a kind, two-day training taught participants, comprised mainly of fibromyalgia support group leaders and advocates, how to work with the media; develop local advocacy programs; initiate state or nationwide policy initiatives, and create community and corporate partnerships to support efforts on behalf of people with fibromyalgia and other chronic pain illnesses.

In 2007, the LAP program was expanded to include international representatives from countries such as Australia, Columbia, Portugal, Canada, England, Ireland and Taiwan.

Since then, the NFA has trained over 175 support group leaders and patient advocates through the Leaders Against Pain program in other venues, such as the National Press Club in Washington D.C. and the Airlie Center in Warrenton, Virginia.

Taking the skills they learned from the LAP program, many of the program’s graduates went on to advocate on behalf of the fibromyalgia community through several high-profile methods: telling their personal stories to the media, coordinating local awareness and support group events, and participating in related public policy issues with their state and local representatives.

In 2009, the NFA formed the International Leaders Against Pain Coalition (ILAPC). This group is comprised of support group leaders and patient advocates from around the world who have completed the NFA’s Leaders Against Pain program, and who have expressed a desire to collaborate on an ongoing basis on behalf of the FM community worldwide.

For the past several years, the NFA has proudly followed the accomplishments of its Leaders and featured them in Fibromyalgia AWARE magazine and FM Online newsletters. In our continuing efforts to show our support of the LAP graduates and to encourage participation of future members in the Leaders Against Pain program, Fibro Blog is proud to dedicate a special section to this special group. The new section will feature stories of members of the Leaders Against Pain program.


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Relationships, Divorce, and Dating—With FM

31 Jan

by Amie Young
Reprinted with permission from FM Online Newsletter


Back in 2000, not long after I was diagnosed with fibromyalgia, I was reading a book about how this illness can affect all your relationships. Being a newly diagnosed person, I read the chapter with some skepticism and laughed with my then-husband that we would make it together through this troubled time no matter what!

Now nine years later, after going through my third divorce, I live with a kind compassionate, supportive boyfriend and his two daughters, ages 9 and 13. While many of my old friends and relationships are not part of my current life, I feel blessed to have created new and fulfilling relationships with people who know me for who I have become. With my daily limitations and ongoing focus on living well with fibromyalgia, I have developed a new way of seeing life: finding simple satisfaction in doing the family laundry or taking my dogs on a walk. Living well with fibromyalgia and maintaining healthy relationships are among this illness’s silent challenges.

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.

My husband was especially shaken by my inability to be as active socially as a couple. Many times when the time came to go to a party or social event, I did not have enough energy to go, so he would go without me. We had been avid bike riders, kayak buddies, and travel partners. All of those activities had to be toned down or eliminated due to my disability. I could not be around bright lights, noisy parties or with anyone who was consuming alcohol or tobacco.

As my world became smaller and quieter, many of my relationships slowly ended.

Marriage counseling unveiled my husband’s unspoken desire that I be the same go-getter, fun-loving, athletic, party person I was when we met. My inability to be that person and his inability to make the changes to our lifestyle that I needed to survive were the factors that ended our marriage. We still loved each other, but we could not live together. So, after a very traumatic, emotional time we separated, I filed for divorce, and six months later I was single again  After a year of mourning, I was ready to try dating as a middle-aged divorcee with an energy-depleted body, a cabinet full of medicine and, for the first time in my life, low self-esteem.

So: when to tell a potential dating partner about fibromyalgia? For me, that was a process of becoming comfortable with discussing my experience with the illness. Most people I meet don’t know anything about fibromyalgia and, since there are no visible symptoms, it sometimes comes as a surprise when I share the details of living well with this illness with a new acquaintance.

Over time it became clear that it was better to be upfront in the beginning of a new relationship about my limitations, so that any new friend could determine whether or not they can handle me cancelling a date on short notice due to fatigue, a migraine, or a pain episode. I tended to drive my own car to events/dates so that I could leave if I start feeling overwhelmed or needed to rest. I keep my daily commitments to one appointment or an individual one on one date. I found that trying to have a doctor’s appointment and a personal date on the same day required too much energy. I keep phone calls to a minimum since I find myself having to raise my energy to interact on the phone. I prefer chatting via email or in person.

Recently I ran into an old high-energy friend from my pre-fibromyalgia life, and we decided to meet for lunch. At the beginning of our time together she shared with me that she is no longer running her corporation due to some health issues of her own. We quickly compared lifestyle notes and I realized she was still actively in the “busy mode” of getting as many things done in a day as she could; I no longer push myself to those extremes. While we had a nice time together, I realized that I no longer wanted to spend time with people whose sense of self-worth came from accomplishment versus just being. This was a major “aha” moment for me to see how far I have come from being goal-driven to just being me.

Amie Young was diagnosed with fibromyalgia in 2000. She is currently writing a book about her personal experiences of using alternative health practices to live well with fibromyalgia. She lives in Arroyo Grande, Calif., with her three dogs, two cats, and a canary.

 

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New Year, New (and hopefully, better!) Life with Fibromyalgia

19 Jan

It was a great year (2010) of sharing and caring with our fibromyalgia family and community. As we start 2011, we asked our Facebook friends and followers if they’ve made any New Year resolutions for managing their fibromyalgia. We received 240 responses!

From pledging to exercise more, eat better and learn to accept our limits, the posters readily shared their tips and advice for what we hope will be a better and healthier new year for all!

Below are just some of the responses. Go to our Facebook page to read them all!

  • To build up my endurance by enduring exercise! I have not forced myself to do it this past year as it causes major flare ups but I need the energy so this year i am on a mission to extend my endurance!
  • My goal is to get out and walk. I am going to aim for 3 days a week to walk around the block.
  • Soaking in a hot tub with epsom salt and white vinegar helps tremendously. don’t smell too good but you will feel great!
  • To be more active physically and get involved in more to help keep my mind off of pain.. But just being able to get out of bed with less pain and more energy will work for me
  • I swim on a regular basis, this does not stop exhaustion, pain, fibro fog etc, but it does make me feel that i am coping with life a little better!
  • Exercise is the first priority. If I can do anything with my day, the first thing I must do is exercise.
  • Yes, to take greater control of pacing myself. I’ve found that helps a lot. I’m refusing to follow schedules that don’t work for me.
  • Walk, walk, walk it has worked for others….so I’m going to try a walking routine
  • NEVER give up!!! Keep trying to find whatever it is that helps you.
  • Since I have found nothing that works I decided to fight and will not let this take over my life. I am looking more into diet and what foods help and hurt along with trying to exercise as able.
  • Rebuild my endurance as well as cut back of caffiene and alcohol. Took a Zumba class without being sure I could handle it and was pleasantly surprised. Definitely feeling encouraged!
  • I promised myself I would move more. It’s so hard to stay moving when I get off work, I just want to lye down, then I stay down. This year will be different.
  • Yoga!
  • Perspective and attitude!! I have fibromyalgia it does not have me. I refuse to let it be my legacy-when I am no longer of this world it will not be what I remembered for. It will not define me !!!!
  • Listen to your own body and don’t push it. I don’t do mornings well at all, as most Fibro sufferers can relate, so I schedule afternoon appointments and take my time. If I get rushed, forget about it!
  • I don’t make resolutions. I have just recently discovered that I’ve been sabotaging my own health by not doing ANYTHING other than taking fistfulls of pills from my Dr’s. I AM going to start exercising, which is a stereotypical New Year’s resolution, but it’s so much more than that to me. It is a sign that I am FINALLY getting free of a lifetime of feeling worthless and taking steps in the right direction to help myself feel better, because I am worth more than this pain and those pills.

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Becky Halstead: Learning to Say No

14 Dec

By Ben Ryan

After a quarter century of “Sir, yes sir!” Becky Halstead had to learn to say “no.”  To do so was contrary to the very core of her personality.  Relentless discipline had defined her life since early childhood and had helped her shatter one glass ceiling after the next as she marched her way up to the one-star rank of Brigadier General in the United States Army.

“My rheumatologist said, ‘Ma’am, the things that made you do really well in the Army, that served you well, are now working against you,’” Halstead recalled.

Staying in tip-top physical shape was always paramount to her duties.  But beginning in 2004, the running she had enjoyed for nearly three decades began causing searing pain through her legs.

“It was as if you were blowing air into my legs and they were going to explode,” she said.

Typically a head-to-the-pillow sleeper who got by on four or five hours a night, she also began having trouble sleeping for the first time in her life.

She was diagnosed with fibromyalgia not long before her deployment to Iraq, where she was a Commanding General for logistics, leading 20,000 military officers who were responsible for providing supplies, transportation and other support services to a quarter million troops.  True to form, she toughed it through.  But at a great cost to herself.  On a scale of one to 10, she said her pain level in those days was a 10, every single day.

She kept running.

“My attitude was, if it’s not going to kill me, then I’m going to keep doing it,” she said  “It’s painful either way.”

After returning to the States, where she became the equivalent of the president of a university as the first female Chief of Ordnance and Commanding General of the Army’s Ordnance Center and Schools, she faced the growing reality that it was time to make a strategic move on her own behalf for once.

“I had an incredible military career,” she said.  “I was blessed to be promoted early at every rank.  I commanded at all levels.  Some people would tell you I was destined for another star if not multiple more stars.”

In 2008, she decided to retire.

“Yeah, I was pretty upset about having to leave,” she said.  “It was a disappointment.  But I just took that challenge and turned it into an opportunity and went, ‘Okay, well, I’m going to live to be 100.  I’m only 49, I’d better figure this out.’  My whole premise of life is you’ve got to lead yourself.  And so the first thing to do, I think, is to accept that you have this condition, but do not accept that it’s going to run your life.”

Today, 51 and living in rural Virginia, she directs her own consultant group, Steadfast Leadership.  She specializes in motivational speaking and leadership training, inspiring clients in the educational and corporate sectors as well as divisions of the military to achieve the kind of success she’s so long enjoyed.

Running her own business gives her the freedom to design her own schedule, take time to care for herself and reduce stress, and in her words, “to learn to say no.”

“Now, on a daily basis, two plus years out of the military with a lot of changes to my lifestyle, I would say the average day is more like a three,” she said of her current pain levels.  “And I probably don’t let it get above a seven or eight.”

Those changes include adjustments to her diet, the use of chiropractics and a more moderate regimen of exercise.   She’s always keeping a sharp eye out for new information that might help her, and keeps an equally vigilant eye on herself.

“The more educated you are, the more you see the signs and you don’t let yourself spiral out of control,” she said.  “When my legs start to get where I can’t sit still and I feel like my heart’s going to come out my legs, then I know that I have pushed myself too hard.  Sometimes it’s to the point where it takes me several days to get back down off of that.  But at least I recognize it, so I don’t get any deeper into a hole.”

The lessons she’s learned from her own health struggles have informed the insights she shares with others, including her role as an active spokesperson for the Foundation for Chiropractic Progress.

“In my dealing with fibromyalgia, I think it’s helped me help other people to deal with not just fibromyalgia, but any kind of pain in their life: emotional, physical, spiritual,” she said.  “It helped me be a more understanding, caring, encouraging person for other people.”

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“Fibromyalgia-Chronic Pain News” set to launch in 2011

8 Dec

One of the National Fibromyalgia Association’s goals is to ensure that all of our registered users have access to resources that offer up-to-date and clinically proven information that continues to raise awareness and assist patients improve their quality of life.

In January 2011, a new monthly online report, “Fibromyalgia-Chronic Pain News” will become available by subscription. It will include articles on recent scientific research that will help patients be alerted to better treatment and diagnostic options, updates on events and activities related to FM and chronic pain, access to and information on new treatment opportunities, and much more!

In support of the National Fibromyalgia Association, the publishers of “Fibromyalgia-Chronic Pain News” have agreed to provide a FREE one year subscription of the monthly report to all of the NFA’s registered users beginning in January. We hope that you will enjoy this gift and that it will become a “must read” along your journey to wellness!

If you are not a registered user with the NFA, and wish to receive “Fibromyalgia-Chronic Pain News”, please send an email to: webmaster@fmaware.org with your name and email address. Please put “FM-Chronic Pain News” in the subject line.

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