Tag Archives: fibromyalgia

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

STUDY: Direct Medical Costs Are Double for Patients with Fibromyalgia

8 Jun

Following is an abstract from a published scientific article regarding medical costs associated with fibromyalgia and the impact of a brief multidisciplinary treatment program.  The four year medical cost statistics of fibromyalgia compared to control patients in the study group are staggering.  The total four-year medical costs for controls in the study were $7774 compared with $15,759 for those with fibromyalgia.  Part of the study’s hypothesis included comparing medical costs over a four year period after administration of a cognitive behavior therapy program.  The outcome of the study demonstrated that the increased cost in fibromyalgia medical care is related to the severity of symptoms and was not impacted by participation in a brief cognitive behavior therapy program.

STUDY: Direct medical costs in patients with fibromyalgia: Cost of illness and impact of a brief multidisciplinary treatment program.

The patients diagnosed with fibromyalgia incur about twice as much direct medical costs than that of non fibromyalgia patients, according to the results of a 4-year study by the Department of Physical Medicine and Rehabilitation at the Mayo Clinic College of Medicine in Rochester, Minnesota. The study was published in the January 2011 issue of the American Journal of Physical Medicine & Rehabilitation.

The objective of the study was to compare the direct medical costs of clinically diagnosed patients with fibromyalgia with the medical costs of matched controls during a 4-yr period and to assess the impact of a fibromyalgia treatment program on healthcare utilization and associated medical costs. The study compared economic outcomes in 87 patients who participated in a fibromyalgia treatment program between 2001 and 2004 and who were local residents for the entire 4-yr period spanning their participation in the program, with age and sex-matched controls.  Costs for the 2 yrs before and 2 yrs after program participation were also compared.

RESULTS: Four-year medical costs for controls were $7774 compared with $15,759 for those with fibromyalgia.  There was no significant change in direct costs after participation in a brief fibromyalgia treatment program.  Those with increased symptom severity averaged $2034 higher direct medical costs during the 4-yr period.

CONCLUSIONS: Patients with clinically diagnosed fibromyalgia incur direct medical costs about twice that of their matched controls.  This increased cost is related to the severity of their symptoms as measured by the Fibromyalgia Impact Questionnaire and was not impacted by participation in a brief cognitive behaviorally based fibromyalgia treatment program.

Clinical Fibromyalgia Research Trials

7 Jun

Submitted by Rae Marie Gleason,
Executive Director, National Fibromyalgia Association

If you are interested in participating in a fibromyalgia clinical research study or you are curious about what kind of research is currently being done, visit www.clinicaltrials.gov.  There you will find over 300 studies. Some of them are now closed for volunteers, but there are some that are still in need of FM participants.

You’ll also be able to read about the kind of science that is currently being tested in fibromyalgia research, as well as information about international studies and where all of the research locations are in case you want to volunteer as a research participant.

Below is a link to a new study being conducted at the University of Minnesota by Alice Larson, PhD and her research team.  Dr. Larson is the scientist who discovered low levels of nerve growth factor in patients with FM.  This discovery has prompted many other FM research studies and has given a tangible scientific anomaly for scientists to use in their work to try to better understand the mechanisms that cause FM.

Dr. Larson now has a new theory that may get at the basic mechanism of fibromyalgia, IF her hypothesis is correct.  This study is being done at the University of Minnesota, so research participants need to live in close proximity.  Please click onto the link and discover information regarding this interesting premise and about the controlled study ready to launch that will try to prove this new theory.

http://clinicaltrials.gov/ct2/show/NCT01322425?term=fibromyalgia+NCT01322425&rank=1

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.

Free Program Improves Prescription Access for Eligible People Living with Chronic Pain

16 May

The following is a message from our newest partner sponsor:

As the number of uninsured Americans with chronic conditions rises and the economy continues to struggle, more and more people are finding it difficult to maintain their health, including those individuals suffering from fibromyalgia and/or chronic pain.  These individuals may be challenged to stay compliant with their medications due to an inability to afford them.  However, skipping medicines or cutting back on medical care can lead to more serious health consequences.

To help uninsured Americans access the medicines they need, leading pharmaceutical companies sponsor the Together Rx Access® Program.  The Program helps eligible individuals and families gain access to immediate and meaningful savings on prescription products right at their neighborhood pharmacies.

Individuals may be eligible for the Together Rx Access Card if they do not qualify for Medicare, do not have public or private prescription drug coverage, and have a household income of up to $45,000 for a single person to $90,000 for a family of four (income eligibility is adjusted for family size).

Most cardholders save 25 to 40 percent* on brand-name prescription products.  More than 300 brand-name prescription products are included in the Program.† Savings are also available on a wide range of generics.  Medicines in the Program include those used to treat fibromyalgia, chronic pain, depression, diabetes, asthma, and many other common conditions.  The Card is free to get and free to use.

Cardholders simply bring the Card to their neighborhood pharmacist along with their prescription, and the savings are calculated right at the pharmacy counter.  There are no enrollment costs, monthly dues or hidden fees.

There are three easy ways to enroll.  All enrollment materials are available in English and Spanish. And, no documentation is required.

  • Visit TogetherRxAccess.com.
  • Call 1-800-250-2839.
  • Complete a short paper application and return it by mail.

A Together Rx Access quick start savings card is also available. Potential enrollees simply call a toll-free number to find out if they are eligible, enroll, and instantly activate their Card. The Together Rx Access Card is activated immediately if the eligible enrollee calls within call center business hours and within two business days at all other times.  Healthcare professionals interested in ordering quick start savings cards for distribution to eligible patients can visit www.togetherrxaccessonline.com/order/.

Together Rx Access also directs individuals to the Partnership for Prescription Assistance (PPA), a clearinghouse for more than 475 public and private assistance programs, including nearly 200 offered by pharmaceutical companies. Those who are eligible for the Together Rx Access Card may qualify for additional savings on prescription medicines, or even free medicines, through other patient assistance programs in the PPA. The PPA also connects people to free health clinics in their community.

For more information, visit TogetherRxAccess.com. The website connects people with resources about coverage options, prescriptions savings, better health and health care reform.  Information is also featured on Facebook at www.facebook.com/TogetherRxAccess, and on Twitter at http://twitter.com/TRxA.

  • *Each cardholder’s savings depend on such factors as the particular drug purchased, amount purchased, and the pharmacy where purchased. Participating companies independently set the level of savings offered and the products included in the program. Those decisions are subject to change.
  • †Visit TogetherRxAccess.com for the most current list of brand-name medicines and products.
  • Together Rx Access and the Together Rx Access logo are trademarks of Together Rx Access, LLC. All other marks are the property of their respective owners.

© 2011 Together Rx Access, LLC

The National Fibromyalgia Association is proud to welcome Together Rx Access® Program as our newest partner Sponsor. We thank them for helping us continue to provide our information free for our readers.

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


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

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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