”Fibromyalgia: Beliefs & Expectations” was the first full-length video created by the National Fibromyalgia Association from the patient perspective. This was produced about 6 years ago, before we had any FDA approved medications for fibromyalgia, but many of the experiences described by our “patient stars” are still very relevant today.
We hope you enjoy watching it, and thanks to Jessie, Randi, Barbara and AJ for sharing your stories with us!
As a participant in the FDA public hearing held on August 20 for the approval of sodium oxybate (Xyrem) for the treatment of fibromyalgia, the National Fibromyalgia Association would like to congratulate and thank the patients and physicians who also took part in the proceedings. Because of their outstanding contribution and willingness to share their personal stories, we believe the members of the panel now have a better understanding of the extensive needs for new and improved treatments for fibromyalgia.
Recent research, including the studies of Xyrem, have helped to further build legitimacy for fibromyalgia, and provide a better understanding of the complexities of the physical abnormalities within the central nervous system that play a major role in the pathophysiology of fibromyalgia. It was clear at the hearing that there continues to be a need for decision makers to be made aware of patient needs and attitudes about treatments, and their practices in utilizing medications as confirmed by published fibromyalgia research.
We are now further aware of the panel’s concern that the misuse of sodium oxybate could lead to negative consequences for fibromyalgia patients and others. However, research shows that fibromyalgia patients do not exhibit addiction tendencies. On the contrary, fibromyalgia patients are conservative in their use of pain medications.
Understandably, the NFA was very disappointed in the panel’s vote to presently deny approval of Xyrem for the treatment of fibromyalgia. Fibromyalgia patients have the right to have medications available for treatment that have great potential, as shown by in-depth clinical studies, to beneficially impact their quality of life.
To read the complete statement, click here.
Lynne Matallana, president and founder of the National Fibromyalgia Association, testified at the FDA hearing on Xyrem. Read the transcript of her testimony here.
On August 19, NFA president Lynne Matallana, was interviewed live on To Your Good Health Radio. It was the first time that the show, which has featured celebrity guests like Mariel Hemingway, Stephen Baldwin and Suzanne Sommers, talked about fibromyalgia.
“The show received the most emails and questions for this segment!”
According to the show’s host, Dr. David Friedman, who is the health expert for Life Time Television’s morning show, Lynne’s interview was one of the most popular segments in the show’s history! “We received the most emails and questions for Lynne than any other show!” Dr. Friedman announced on the air. One email came from a hospital with a support group for fibromyalgia sufferers who were so impressed with the show and with Lynne that they want to play it for their members.
Here’s a message to the NFA from “To Your Good Health Radio,” as well as a special free gift offer just for the NFA Facebook fans!
To Your Good Health Radio would like to thank Ms. Matallana for joining our show and giving our listeners so much valuable knowledge! We hope to have you on our show again very soon.
If anyone missed the show, just go to www.Facebook.com/toyourgoodhealthradio. Anyone who goes to our Facebook page and “likes us” and listens to Lynne’s segment will receive a free MP3 of the host, Dr. Friedman’s best selling CD, “America’s Unbalanced Diet” as a gift to those who follow such a wonderful foundation – National Fibromyalgia Association!
Simply hit “Like” to become a fan of the page, then send an email to newsletter@toyourgoodhealthradio.com to have the download instantly delivered to your inbox!
“Seeing such a great need and wanting to help people with chronic pain and related health issues has made all the studying and working well worth it!” – Jordan Aquino, NFA Research & Program Manager
Jordan Aquino with NFA president and founder Lynne Matallana
If you think that today’s youth are stereotypically lazy and self-absorbed, then you haven’t met Jordan Aquino.
An honor student and recent graduate of California State University, Fullerton (CSUF) with a major in Health Science and Chemistry, Aquino, 27, will be pursuing a Master of Public Health (MPH) degree at CSUF this coming academic year. Upon completion, he plans on advancing in academia by pursuing a doctoral and/or medical degree.
As if being a full-time student—including two terms as president of CSUF’s Honor Society—doesn’t keep him busy enough, Aquino has also juggled four jobs for the past two to four years.
At CSUF’s Fibromyalgia Research & Education Center (FREC), Aquino holds the title of Senior Research Coordinator; at Apex Research Institute in Santa Ana, he is Assistant Clinical Research Coordinator; he is on the editorial staff of the Californian Journal of Health Promotion; and at the National Fibromyalgia Association (NFA) in Anaheim, Aquino is the Research and Program Manager.
Aquino’s background in research studies has made him a popular presenter at several national medical conferences on behalf of the FREC and the NFA, speaking about the physical and cognitive statuses of people with fibromyalgia and how weight influences pain levels. He has also been published in peer-reviewed, scholarly, international journals.
“Jordan is one of the most talented and brightest staff members we’ve ever had,” said Lynne Matallana, president and founder of the NFA. “Jordan’s knowledge of his subject matter and passion for his profession are exceptional. The fibromyalgia community—present and future—are very fortunate to have him working on their behalf, particularly in the field of research in finding a cure for this debilitating chronic pain illness.”
“Working with these organizations and being able to see such a great need to help people with chronic pain and related health issues has made all the studying and working well worth it,” said Aquino. “My experiences have also solidified my passion and ambition to pursue medical research through higher education so that I may positively affect people’s quality of life.”
Jordan Aquino was born and raised in the San Gabriel Valley. He moved to Orange County in summer 2010.
In his spare time, Aquino enjoys high-adrenaline activities like skydiving and bungee jumping, golfing, playing tennis and volleyball, and traveling.
As About.com’s “Guide” on Fibromyalgia and Chronic Fatigue Syndrome, Adrienne Dellwo is one of the top writers and bloggers on CFS and fibromyalgia, regularly bringing her readers the latest news on groundbreaking research, treatment options and tips on managing the chronic pain illnesses.
We are very fortunate that Adrienne took some time out of her busy schedule to write “My Fibro Story,” an exclusive on FibroBlog!
My Fibro Story
By Adrienne Dellwo
I used to be a TV news producer. I thrived on stress, juggled multiple tasks and tight deadlines with ease, and loved working in a noisy, chaotic environment where I never knew what would happen next.
Then, the fibromyalgia that had been creeping up since the birth of my second child leapt onto center stage in my life. My dream job became a nightmare — the stress caused intense pain to ricochet through my abdomen; I lost the ability to multitask; the constantly looming deadlines threw me into a panic; my short-term memory was gone; and the general hubbub surrounding me all the time overwhelmed my brain and left me, on some days, unable to do even the basics of my job.
I’d arrive home (on the days I didn’t call in sick) only to have nothing left for my family, collapsing on the couch in agony instead of cooking dinner or playing with kids. My husband was left with all the work of running a household and raising two young children, as well as taking care of me.
We needed my income, so when I finally decided I had to leave TV news behind, I had two options: applying for Social Security disability, or becoming a freelance writer. It was scary, because I had no idea whether I could be successful with either option.
Right away, my health improved tremendously. I spent what time I could preparing a Social Security claim and scouring the Internet for writing jobs. I also did a lot of research on my illness.
Then one day I came across a job listing: About.com Guide to Fibromyalgia and Chronic Fatigue Syndrome. I said to myself, “That’s my job.” After a rather long and grueling process that involved a lot of writing, research, and tinkering with technology, About.com agreed and I became the new Guide. That was almost three years ago.
Staying on top of research and talking to other fibromites has helped me find treatments that work for me, and of course it’s incredibly helpful to communicate with people who truly understand what you’re going through. When I started, though, I had no idea how rewarding this job would be — I’m regularly brought to tears by stories from readers who say I’ve made a difference in their lives. That’s an amazing thing. I’ve learned that some of the most powerful words in the English language are, “I’ve been there, I believe you, and I understand.”
My blog is one of the more important aspects of my job and takes the largest chunk of time. Even with major improvements in my health, some days I just don’t have the energy to write, or the fibro fog is too thick. Fortunately, I have the freedom to work when I’m able and rest when I’m not, and I can read emails from readers or comments left on my blog for inspiration.
About.com is a great company to work for. They provide all the high-tech tools and support, as well as an amazing platform for unique voices. Even though I work from home, I don’t feel like I’m in this alone. Also, where else can you get a job because you have a chronic illness? Fibromyalgia may have taken away the TV career that I loved, but it also gave me an opportunity to do something much more personally rewarding.
For the chronically ill, blogging is a powerful thing. We often feel isolated and invisible, but when we put ourselves out there in a blog, we suddenly have a voice, and we start to build a community. It does take a lot of energy, especially when you explore topics that are emotionally taxing, but the end result is worth it. I know I’m never alone in this, and I can help other people see that they’re not alone, either.
Today, I’m actually grateful that my life didn’t continue on its original path. I went into news because I wanted to make a difference in people’s lives, but I touch more people in a more meaningful way now. The time I can now spend with my family is invaluable, and I’ve even managed to cobble together a social life, with friends who understand my limitations.
While I’d like to be in perfect health, I’ll settle for making slow, steady progress. The people I’ve met on this journey have enriched my life more than I could ever enrich theirs. Even if I were suddenly in perfect health, I would never go back to my old life. I was forced to slow down, re-prioritize, and simplify my life, and I’m happy for that. It’s given me far more than my illness has taken away.
Allsup, a nationwide provider of Social Security disability representation and Medicare plan selection services, has been one of the strongest supporters of the National Fibromyalgia Association. For the past several years, Allsup has created and distributed Fibromyalgia Awareness Day posters in support of Fibromyalgia education and awareness.
Allsup works with hundreds of individuals with fibromyalgia each year and recognizes the need for healthcare provider and patient education.
“Allsup is pleased to support the National Fibromyalgia Association’s education and outreach efforts,” said Tai Venuti, Allsup manager of strategic alliances. “As we reflect on the history of the Social Security Administration, we see how it has responded to advances in medicine and societal changes. This development over time is something that the fibromyalgia community can relate to as the condition becomes better understood over time. NFA is an effective advocate for positive change on behalf of individuals who cannot work because of fibromyalgia, chronic pain and other conditions.”
August 14, 2010 marks the 75th anniversary of the Social Security Act that introduced a form of economic security that didn’t exist for the elderly. Nineteen years later, the disability division was created. The Great Depression was a triggering event for the original legislation, and now, during the current economic crisis, individuals and their families are realizing the crucial support provided by Social Security’s programs, according to Allsup.
“The Social Security Administration and its nearly 65,000 workers continue to provide an invaluable service to Americans who retire or who can no longer work because of disability,” said Jim Allsup, president and CEO of Allsup. “We honor SSA workers’ dedication to public service and thank them for making these programs possible. We especially recognize their commitment to improve Social Security’s disability backlog crisis. We hope that government and industry can work together to ensure that all Americans with disabilities receive the benefits they have earned.”
Today, the NFA’s Facebook page reached another milestone: 46,000 supporters/fans (or “Likes” as the new term used by Facebook), making it the largest page among nearly 1,000 fibromyalgia pages and groups on Facebook.
“The NFA is very grateful for all of our Facebook fans who have made this page one of the few online and offline places for support and unconditional understanding of fibromyalgia,” said Lynne Matallana, president and founder of the National Fibromyalgia Association.
Here are the most current statistics for the NFA Facebook page:
“10,000 for 10 Million”
It was a year ago, August 3, 2009 to be exact, when the National Fibromyalgia Association launched its first social media campaign on Facebook called “10,000 for 10 million.” The ambitious goal of the campaign was to get 10,000 fans on its Facebook page in two months as a way to raise awareness on behalf of the estimated 10 million people with fibromyalgia. (The NFA’s Facebook page was created in early 2008, and had less than 2,000 fans before “10,000 for 10 million” was launched.)
The campaign also aimed to highlight the NFA as the largest nonprofit organization dedicated to addressing and decreasing the burden of fibromyalgia through education, research and patient advocacy
“10,000 for 10 million” not only successfully reached its goal of getting 10,000 fans on the NFA’s Facebok page, but it did it in less than three weeks! Read the article about the campaign in the Orange County Register: “How OC Charity Got 10,000 Facebook Fans”
Thank you, NFA Facebook fans!
Norma with husband, Preston and their children, Donovan, 9 and Noelani, 4
My name is Norma Occhiline and I am a 32 year old woman who was diagnosed with fibromyalgia in October of 2007. I believe my fibromyalgia was brought on by stress. I never considered my body as being a living organism needing plenty of food and rest to work properly. As a younger adult I kept this sensation of not needing certain things to push on through life; with little money following my parents’ divorce I learned of hunger and that I could work with it when necessary.
I had just started a new job as an office manager of a dental practice in June of 2007 and was also a mommy to a one year old who slept in two hour intervals since birth. Since my husband and I brought in just enough money to cover living expenses, keeping daycare costs low was a top priority. We had a family member willing to watch our daughter and take our kindergarten son to a nearby school for cheap. However, she lived 20 miles west from our home in Phoenix, Arizona and I worked 20 miles east from our home. I would leave the house at 5:00 am to arrive to open at 7:00 am four days a week.
That doesn’t seem like such a bad exchange at all; a little longer drive to save money. What I haven’t told you yet is that I was also a full time student at Arizona State University’s West Campus in Glendale. Three days out of the week I would drive straight from work to school, approximately a forty minute drive, and then arrive home around 10:00 pm. If you add the drive, work, school and baby schedule all together, you get one unhappy and very tired momma.
But being the fighter that I was, already beating Uterine Cancer at 20, preeclampsia with my son’s pregnancy and gestational diabetes with constant nausea during my daughter’s pregnancy, I had no choice but to continue on every day. Sleep or no sleep and food or no food, I kept on each day.
Then in the fall I started to notice changes in my body. My legs hurt every day, like waking up feeling as if I had run a marathon in my sleep. I was not just tired anymore, but physically exhausted. I was falling asleep everywhere and sometimes during class I couldn’t even get the energy to move my pencil. One of my teachers returned an essay and asked who wrote it because it wasn’t up to my usual standard. I read the paper and couldn’t understand what it meant either. I started to get scared. Then one evening my skin felt as if it was on fire. Anything that touched my skin felt like a hot iron. By then I was terrified.
I had been seeing my primary care physician and he finally referred me to a rheumatologist. He diagnosed me in October as having fibromyalgia and suggested life changes. So I quit my great job and became an inbound call representative for a nearby business and dropped school to half time. Gradually things were getting tolerable because I got more time to sleep. The leg pains never left and more often than not I could barely make it to work, especially in the summer heat. However, as usual I kept pushing myself and got my daughter on a sleep schedule. By early 2009 things started to stabilize health wise. My flare-ups were coming if I didn’t get enough sleep, with hot or humid weather, right before and during my menstrual cycle. But sometimes they were random and took me down for no reason. All of these are my current status, except for the leg pains. Since being prescribed an approved medication for fibromyalgia, I do not have leg pains as often, which I am very grateful for.
Another thing different a year later is that I am now disabled. In April of 2009 I was rear- ended by a woman who was talking on the phone. I now have three bulging disks in my neck and damaged ones in my lower back. This constant pain had caused me to lose my job and all of my income. I am on several medications for both conditions. I have lost 40 pounds and weigh only 115; that is what I weighed at 16.
Every day is a struggle to go on; of course some are worse than others and I can only watch life go by. On the few days I can push myself to get out of the house I enjoy every minute of it. I am still in school by taking online courses through A.S.U. but had to change my major. Who knows if I’ll ever get to use my diploma, but I’m not going to let anything stand in the way of achieving. I want to achieve healing (both mental and physical), my diploma and being the best mom and wife I could have been.
My husband, Preston is my best friend and my ’caretaker’ as I like to call him. He has been with me and continues to support and help me in any way he can. I also have the best support system with friends and family, especially my mother who calls daily to see how I am doing.
I don’t blame anyone for the suffering I have and will continue to endure. I am reading on Buddhism and how to create an inner peace to help me through those dark hours of pain. I also listen to the Beatles and when I am vomiting from the pain I rock back and forth while singing the first song that comes into my head.
Despite all of my pain and daily depression, nothing makes me feel more alive than to watch my children smile. I am also very lucky to have such an adoring husband by my side. My life is worth living and I am going to live it the best way I can.
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Share your story: NFA@fmaware.org
The fibromyalgia community is fortunate to have many talented writers who, despite everyday challenges of living with chronic pain and other debilitating symptoms of fibromyalgia, continue to raise awareness of this very real condition by sharing their personal and poignant stories on their blogs. The National Fibromyalgia Association launched our own FibroBlog early this year, and we are honored to join the ranks of those raising their “blog voices” for the millions of people with fibromyalgia.
We read and follow many fibromyalgia blogs, and every so often, we would also like to share some of them with you:
Chronic Connection
If my children have learnt anything positive about having a “Chronic Mom”, it is that they not only demonstrate compassion toward me when they can see that I’m struggling, but towards each other, and others in their lives. They are such gentle souls, with an amazing grasp of awareness towards others, and I’m very proud of them both… Read more….
Fibromyalgia Blog
This is a list of 45 simple ways to improve your life. Nothing drastic. Nothing requiring years of therapy or hard work. Just minor changes that have major effects. You can apply these tips now to immediately add more joy, positivity, and zest to your life…Read more…
Oh My Aches & Pains
How to really help me when I ask for your help
Perhaps the most frustrating thing about being disabled is needing to ask for help. The second most frustrating thing is navigating the whole dynamic of being the person who is being helped. Low and behold, I have discovered that many strange things can happen when you ask your family, friends and strangers for help…Read more...
In the Shadows of Fibromyalgia
Things are going pretty well, considering you have fibromyalgia. Then out of the blue it suddenly hits – the dreaded flare. And you wonder, what could have caused this to happen? Read more…
Graceful Agony
I am extremely honored, and VERY excited to announce that Graceful Agony has been nominated in THREE categories of The Canadian Weblog Awards for 2010!! HOORAY!!! The Canadian Weblog Awards is a juried competition that showcases and recognizes excellence in Canadian Blogs, and the art of ‘blogging’. There are several categories, and come January 1st, 2011 – 3 winners will be announced for each category!! Read more…
Felicia Fibro
Sensitivities to Light
For people with fibromyalgia sensitivities to light, sound and touch can greatly alter their day to day lives. Bright lights, sounds that are numerous or loud and even light touch can trigger pain and cognitive difficulties quickly…Read more…
Rebuilding Wellness
Is your ache all in your head?
While wogging this morning (walking a little/jogging a little), I had a thought. Exercise does that to me. It helps me do a bit of mental cave spelunking. Today, I thought about pain levels…Read more…
FibroHaven
Is it time to rethink the fibromyalgia doctor-patient relationship?
As a fibromyalgia patient, what are your expectations when you arrive for your doctor appointments? Do you arrive prepared to work with your doctor on how best to manage the troubling symptoms of fibromyalgia, or do you arrive hopeful that he/she will have some treatment, some answer that will once and for all end your suffering? Read more…
In honor of September, Pain Awareness Month, Fibromyalgia AWARE magazine is sponsoring an E-Card Contest with the theme “Pain Hurts Everyone”. Put your imagination to work and create a still image E-card to help spread the word about Pain Awareness Month. Winning artists and their E-card will be featured in an upcoming issue of Fibromyalgia AWARE magazine!
