Tag Archives: national fibromyalgia association

All Wheels 4 Fibromyalgia sets record for 2-person mixed team in Race Across the West

24 Jun

Our champions! Denise Stone and Karl Wianecki

“Just like dealing with fibromyalgia – crewing an extreme event like this is all about your attitude and working through adversity. We needed to be flexible and adapt to all of the challenges we faced – we worked so well as a team with our single goal of facilitating the safe finish in Durango. We certainly did our job!” (Deb Feather, AW4F crew member and fibromyalgia sufferer)

Congratulations to the All Wheels 4 Fibromyalgia team which set the record for the 2-person mixed under 50 in Race Across the West. RAW kicked off June 15 in Oceanside, California and finished on June 17 in Durango, Colorado. Their official time was 2 days, 2 hours and 4 minutes.

Our AW4F team and brother and sister riders Denise Stone and Karl Wianecki are absolutely amazing! They rode 900 miles with 50,000 feet of climbing in 2 days and 2 hours at an 18 mph pace. This means each cyclist had to ride 250 miles per day with essentially no sleep and only 10-15 min breaks throughout the whole race.

NFA president and founder, Lynne Matallana joined the team at the starting line in Oceanside. “Denise and Karl’s determination through all the difficulty and challenges they faced is shared by all the fibromyalgia patients,” said Matallana. “This is our team!”

“It was great having Lynne at the starting line. More than ever, her being there helped us to focus on our goal of raising awareness for fibromyalgia. We proudly mentioned this in all of our interviews!” added Feather.

“I am so thrilled to have reached this accomplishment with my brother Karl, and our fantastic crew including Ray, Brenda, Deb, Connie and mechanics Julian and Andrew! The crew was flawless – as in all of our past RAAM journeys ensuring optimal rider fuel, perfect navigation, executing fast efficient transitions between riders for all 900 miles, and no bike mechanical issues”. (Denise)

“The 2-person race was much more challenging compared to our 4-person Race Across America. So much more exhausting, and it was a struggle just to eat and stay hydrated. You just have to give everything you have and just keep pedaling.” (Karl)

“The conditions were absolutely treacherous this year – we dealt with extreme heat including 110 degrees through the desert, 40 mph cross-winds, and steep cliffs in Arizona and intensive climbing into Colorado that seemed to never end. All of this with literally no sleep for the full 50 hours.” (Denise)

“The scenery was amazing and really kept us going – my favorite was the sunrise over Monument Valley in Utah and the awesome red cliffs of Sedona. We especially want to thank the AW4F and NFA Facebook fans for sending us encouraging words and thoughts throughout the race! We felt their strength behind us – pushing us along!” (Karl)

NFA president, Lynne Matallana being interviewed at the starting line in Oceanside, CA

Denise riding strong through beautiful Utah - right around her 350th mile of consecutive riding

Karl heading into the 'Glass Elevator' treacherous 10 mile downhill with sharp hairpin turns and 40 mph cross winds

Crew members Deb Feather and Andrew getting Denise ready to ride...again

The Finish Line!

Beat the heat with fibromyalgia

22 Jun

By Dana Herrera

While the warmer times of year are often a welcome change to bone-chilling winters, extreme heat can take its toll. And sunny activities and beach retreats require some extra health considerations. Keep in mind these important tips to enjoy sunny days—and warm nights—even longer.

 

Sunny Sensitivities

Fibromyalgia symptoms are infamous for changing with the weather. Humidity, rainy days, and extreme weather changes can trigger aches and pains. Though a bit of sunshine every day is a great energy booster, too much of a good thing can leave patients feeling drained and more exhausted than ever. Additionally, people with FM can be more sensitive to medications that interact with the sun.

Marla Brumbaugh, a long-time fibromyalgia and chronic fatigue syndrome sufferer from Ohio, says spring and fall—when the weather does not go from one extreme to another—are her best seasons for symptom relief. During the summer, however, extreme heat just makes Brumbaugh plain miserable.

Though most people are uncomfortable in extreme heat, Brumbaugh’s reactions are intense. “I get frequent headaches when it’s hot and humid,” she says, “and I have a higher sensitivity to bright light, noise, and even smells, which makes it difficult for me to concentrate or remember anything.”

Her multiple chemical sensitivities make Brumbaugh anxious, which can lead to her feeling depressed. “I am a full-time fine artist, spending as much time as possible working and teaching in my downtown studio. Anxiety and creativity do not mix,” she says. “Some days when it’s really hot, it’s hard to get it together to make it up to the studio.”

Sharym Ocasio-Soto of Miami finds that some of her fibromyalgia and blood pressure medications interact with the sun. “The sun causes rashes and the heat causes fatigue,” she says. “Even … while driving, my arm will get sun and I develop a rash.”

Ocasio-Soto also feels achy when the weather turns humid. Luckily, her high-blood pressure forces her to stay hydrated, a key ingredient for fighting sun fatigue.

If you plan on spending time in the sun, be sure to check your medications for a sun interaction called photosensitivity. A wide variety of medicines can cause photosensitivity, which can make us more susceptible to sunburns, rashes, and hives. Included in this list are NSAIDS (ibuprofen, naproxen), antibiotics (tetracyclines), statins, and certain sunscreen ingredients like salicylates.

Prescription medications often come with a special photosensitivity warning. However, the safe bet is to ask your pharmacist to review all your medications—even over-the-counter meds and topicals—for possible photosensitivity reactions. If you suspect a photosensitive reaction after using a certain product or medication, see your doctor immediately. Your physician may recommend an alternative medication or treatment plan.

 

Beat the Heat

“Of course, the hotter it is, the cooler you want to stay, so I want to be in the air conditioning all the time or take showers often,” says Ocasio-Soto. “The coldness of both things makes the fibro wake up and flare by nighttime.” The transition from your air conditioned house or office to suffocating heat, or vice-versa, may trigger a fibro-flare.

Planning ahead may help to avoid these situations. For example, carry a light sweater to put on before entering air-conditioned buildings or lower your air-conditioning before you transition to the outdoors. “Stay hydrated and take things little by little,” Ocasio-Soto suggests. “If you are going to swim, [for instance,] try doing it in the afternoon. This way, the water is not cold and won’t trigger your fibro.”

Mathew Roberts, a chronic pain suffer of 25 years, recently moved from Portland to Arizona to help reduce his symptoms. “I’ve got to say, I much prefer the desert,” he says. “Something about the constant drizzle and the ever-fluctuating barometric pressure [of the northwest] really got me down.”

An avid cyclist, Roberts tends to stay indoors in the summer months. “I try to stay out of the extreme heat,” he says. “I tend to get outside time only during the wee hours of the morning.” His friends tease him about how cool he keeps his house, but Roberts doesn’t mind. “If I have to be outside in the heat, I like to put an ice cold wet bandana around my neck,” he adds. “I find that there are sensitive points in the neck that, when cooled, have the effect of cooling my entire body.”

 

The Pros and Cons of Sunshine

Several recent medical studies suggest that a bit of all-natural Vitamin D (as little as 15 minutes of sun per day) can reduce chronic pain and fatigue, while improving overall mood. And the quickest way to get that boost is to head out into the sun.

Unfortunately, this can be quite a task. The use of sunscreen, living in northern climates, an increased amount of time spent indoors, and even a lack of Vitamin D-rich foods may all contribute to not meeting the government recommended 200-600 IU per day. Fortunately, more and more physicians are testing for this deficiency and educating patients on supplements and lifestyle changes that help boost our Vitamin D levels.

Today, debates are raging over the effectiveness and even the safety of some sunscreens. Though there are currently no federal guidelines for sunscreen, organizations such as the Environmental Working Group (EWG), a research-based environmental consumer watchdog, have their own recommendations.

The EWG cautions consumers against sunscreens that advertise high levels of SPF protection. Currently, the effectiveness of over 50 SPF has not been proven and there is a concern that we are staying in the sun longer with the belief that higher levels of SPF equals longer and higher levels of skin protection. And a high SPF does not necessarily mean a sunscreen protects against both UVA and UVB rays. Additionally, the EWG reports that sunscreens that use retinol or retinyl paliminate (Vitamin A), may increase the rate of skin cancer cell production. And ingredients in many sunscreen products, including oxybenzone, are suspected of causing hormone disruptions.

Generally, the EWG recommends a broad-spectrum, water-resistant, mineral sunscreen and frequent reapplication. Additionally, they advocate following basic guidelines for sun exposure similar to those given by the CDC. Their full report and sunscreen guide can be found online at http://www.ewg.org.

The debate about sunscreen is ongoing. However, the EWG sunscreen ratings may point us to some fibro-friendly products. Many of their highly rated sunscreens are free of common sunscreen chemicals we may be more sensitive to. However, before using a new sunscreen product, test it first. Apply a bit to your inner wrist to see if your skin reacts.

Warmer weather offers many beneficial impacts for pain and mood. Even if you have an extreme sensitivity to heat, there are ways to make your time outdoors comfortable—and even enjoyable. So don that hat, grab that water bottle, apply that sunscreen, and enjoy the sunny side of the season.

 

Sunny Safety

Follow these simple guidelines from the Centers for Disease Control and Prevention (CDC) to stay healthy in the heat.

  • Drink lots of water. When the body heats up, you sweat to keep cool. If you don’t replace lost fluid, you can experience symptoms of dehydration, from extreme fatigue to headaches. Tip: Reusable water bottles that clip to your purse or bag are a great way to stay hydrated on the go.
  • Stay cool running errands. The hottest part of the day tends to be between 10 a.m. and 4 p.m. Try to avoid unprotected sun exposure during these hours. Instead, plan your outdoor errands early or later in the day.
  • Cover up—not just with sunblock, but with protective clothing and hats. Tip: Pick lightweight fabrics such as linens, cotton, or even hemp. Three-quarter sleeves and pants can provide a cooler alternative to full-length.
  • At the beach, clothing designed for surfers offers some UV protection and is often water friendly. Don’t forget the beach umbrella, swimsuit cover-ups, floppy beach hats, and water shoes. And a broad-spectrum water-resistant sunscreen is essential. Just be sure to reapply often.
  • Remember to protect your eyes! Sunglasses are a must. Break out those Jackie-O shades or ask your eye doctor about transition lenses.

Sunny Checklist

A bit of planning can make all the difference in managing your symptoms. Use this checklist to consider how to prepare for your warm-weather fun—and help prevent it from triggering a fibro-flare.

  • How long will I be outdoors?
  • Do I have sun protection?
  • Can I access shade, water, and additional sun protection if I stay longer than expected?
  • Have I taken any medications that make me more sensitive to the sun?
  • Will I be outdoors during changing temperatures and/or going from one temperature to another throughout the day?
  • If I will be indoors often, can my doctor recommend ways to increase my Vitamin D?

 

 

 

References

 

Drug-Inducted Photosensitivity. Alexandra Y Zhang, MD, Assistant Professor, Department of Dermatology, University of Pittsburgh. Coauthor(s): Craig A Elmets, MD, Director of Dermatology, Departments of Dermatology, Pathology, and Environmental Health Sciences; Professor, The Kirklin Clinic, University of Alabama at Birmingham. http://emedicine.medscape.com/article/1049648-overview. Accessed June 15, 2010. Updated January, 15, 2010.

 

Environmental Working Group Full Report: Sunscreen Guide 2010. http://www.ewg.org/2010sunscreen/full-report/. Accessed June 12, 2010.

 

Grant, W. (2009). In defense of the sun: An estimate of changes in mortality rates in the United States if mean serum 25-hydroxyvitamin D levels were raised to 45 ng/mL by solar ultraviolet-B irradiance. Dermato-Endocrinology. (1)4: 207-214.

 

Onoue S, Seto Y, Gandy G, Yamada S. Drug-induced phototoxicity; an early in vitro identification of phototoxic potential of new drug entities in drug discovery and development. Curr Drug Saf. May 2009;4(2):123-36.

 

This article, “Beat the Heat” by Dana Herrera, appears in Fibromyalgia AWARE magazine, Spring 2011, Vol. 22.  Reprinted with permission from the National Fibromyalgia Association:www.fmaware.org© FM Aware All rights reserved. No material may be reproduced or used without written approval of and proper credit given to Fibromyalgia AWARE

My Fibro Story: Reclaiming my life and health, with Rosie

6 Jun

The author with Rosie

My name is Jeannie Hughes, and I was diagnosed with myofascial pain, repetitive stress injuries and fibromyalgia in 1995, and I have had an on and off struggle of chronic pain -the syndrome- for almost 15 years. In my lifetime, I have had a number of   traumatic incidences that occurred to me, but nothing is as life-changing as becoming lost and not knowing how to help myself.

I pray that no one ever experiences what I went through a few years ago, especially if they have fibromyalgia or any disorder that may affect the central nervous system. They say that the human body cannot survive more than four days without food or water. I went four days without a single drop of water, food, or any sleep, while I had been completely lost in the city.

Having my body deteriorate to such extremes, I could watch my own body fall apart, including my immune system. I lost most my essential belongings and had also been mugged in the subway. I also had an undiagnosed congenital heart defect, which was causing me to faint and fall down. And yet, to the average New Yorker, I looked no different than a homeless person, even though I was a well-educated professional with a Masters Degree from Brown University and BA from Dartmouth College.

While I do not want to go into details of how I survived those four days
without food, water, shelter or sleep, I can say that by the fourth day I
was covered with bruises, dirt, and blisters, and I could no longer stand
upright. I was curled up on the pavement in broad daylight barely able to
yell for help. I was eventually rescued. During the subsequent months, I had
family caretakers and medical professionals to attend to my recovery. But my
full recovery was truly made possible by a newly adopted puppy, named Rosie.
I could find peace and hope through the love and positive energy I channeled
to this dog and the love she returned.  I thought less about what happened
to me. I saw my dog as my new life partner, a new best friend that I could
rebuild my life with when everyone else was busy or could not be there for
me. We could bond and find joy in each other like no other.

People can be insensitive and impatient and say very unkind things People
can cut each other short or avoid expressing kindness. Dogs, on the other
hand, provide unconditional love and show it in the most beautifully
simplistic and timely ways. My puppy-raising and training experience of
Rosie opened a door of reclaiming my life and health, and I later trained
her with special tasks and work to further assist my recovery. She is
trained to wake me up in a timely manner, remember routine health and
medical self-care strategies, alert to strangers, do my laundry, pick up
dropped items, set off an alarm if I am about to faint or have chest pains,
reduce other repetitive tasks around the home, and more. With her
assistance, I am much safer in taking on more ambitious goals in life like
never before knowing what I can do with or without her during episodes of
increased symptoms, physical limitations and pain. For her devoted service,
I serve her. I cook my dog the best dreamy dog dinners, I bake her homemade
treats, and I have agility equipment and toys galore. We take care of each
other because our bond is like no other.

I rarely talk publicly about my life with my service dog, Rosie, but I hope
that others with chronic pain syndromes, temporary or long-term mobility
limitations, or even depression or PTSD will consider having a specially
trained dog. Such dogs can be trained to assist their daily needs in any
major area life that has been substantially limited by disability or a
history of it. The benefits I have received have been remarkable, and I feel
overjoyed that I also have a career around dogs. With dogs, my life has been
so much better than ever before. There is not a day that goes by that I
don’t wake up to tail wags and puppy kisses!  And there is not a night that
I don’t sleep with furry warm head tucked under my chin to help me fall
asleep in peace.

My Fibro Story: “How a 4th grader can make a world of difference!”

4 May

Anthony with wife, Caitlin, who was diagnosed with fibromyalgia over a year ago

My name is Anthony Moronta, and I am the Physical Education teacher in P.S. 158 in New York City. I am also the track and field coach for the school. This year I decided that our team was going to run for the National Fibromyalgia Association. My wife, Caitlin, was diagnosed with fibromyalgia over a year ago, so I wanted to help raise awareness for this disorder using our track shirts.

The day after explaining this to my students, one particular student handed me an envelope. Inside the envelope was a handwritten note explaining how he felt sorry that my wife was experiencing this disorder, and that his family wanted to donate to the cause to help find treatment. I can you that after reading this note, and almost every time I read this note, I almost came to tears because of how important my wife is to me, and how happy it makes me feel that a 4th grader can help to make such a difference in the world.

My student’s name is Lukas. Enclosed is his check for $180 to be donated to the NFA.

Thank you very much!

All Wheels 4 Fibromyalgia rides again in Race Across the West – June 15, Oceanside, CA

3 May

All Wheels 4 Fibromyalgia and NFA staff members before 2010 Race Across America.

The champion team, All Wheels 4 Fibromyalgia, will be hitting the road once again to raise funds and awareness for the National Fibromyalgia Association. This time, AW4F, which finished in first place in the 4-person mixed category and second place overall in last year’s Race Across America 3,000-mile competition, will be racing in Race Across the West (RAW).

This is one of the most challenging bicycle races and the second longest endurance cycling race in the United States. The route is about 860 miles long, passing through 4 states and climbing over 40,000 feet.

Lynne Matallana, NFA president and founder, will be at the starting line at the Oceanside Pier in Oceanside, California to send off the two AW4F riders on June 15th. RAW ends in the Rockies of Durango, Colorado.  The 2-racers will cover the distance in 2+ days, averaging 350 to over 500 miles per day, using a relay format and race 24 hours a day.

In 2010, All Wheels 4 Fibromyalgia partnered with the National Fibromyalgia Association and select sponsors to raise funds and awareness of fibromyalgia.

Read their amazing story and last year’s win here: “First place! Supporters of All Wheels 4 Fibromyalgia “gave us that ‘oomph’ to keep going!”

If you would like to donate and support the All Wheels 4 Fibromyalgia in Race Across the West, please send your tax deductible donations to:

National Fibromyalgia Association
1000 Bristol Street N #17-247
Newport Beach, CA 92660-8916
Attention: RAW


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

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

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.


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.

 

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.

← Older Entries

Follow

Get every new post delivered to your Inbox.

Join 1,112 other followers