Tag Archives: Lynne Matallana

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!

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


Your Best Night’s Sleep

18 Nov

The following article, “Your Best Night’s Sleep” by Tina Marie Frawley, appears in Fibromyalgia AWARE magazine, Winter 2010, Vol. 21.  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

Do you ever lie awake nights, wondering when restful sleep will sweep you away? Fibromyalgia pain can prevent you from falling asleep—yet deep sleep is vital for people with chronic health conditions. The following steps can keep you from counting sheep and put you into a great night’s sleep.

Avoid unhealthy substances. Caffeine, sugar, and tobacco stimulate the body and mind. Caffeine is a stimulant that prevents many people from falling asleep when it is consumed within hours of bedtime. Likewise, sugar stimulates the brain, keeping you awake.

While some people think alcohol will help them fall asleep, it actually does more harm than good. Alcohol consumption may initially “knock you out,” but the sleep will not be deep—and you are likely to wake up after the alcohol effect has worn off.

Prepare your bedroom. The bedroom should be a sanctuary where all you do is sleep. People who conduct multiple activities in the bedroom, such as watching television or using the computer, will have trouble separating work from sleep. Remove computers and TVs from the bedroom and use them in another room.

Taking proper care of your mattress, such as rotating and flipping it every season, is also important for keeping the bedroom prepared for optimum sleep.

Regulate temperatures. Scientific studies have found temperature plays a major role in sleeping. Cooler temperatures in the bedroom will foster good sleep. It is best to keep the room between 60 and 68 degrees Fahrenheit. The body’s core temperature should be lowered, too. (Be careful when using large body pillows as they may trap heat inside the body’s core, raising your temperature.)

No pets allowed. No matter how much you love your pet, you may have to banish it from the bedroom so its whimpering, jerking limbs, snoring, or other sleeping activities will not disturb your night’s sleep.

Use aromatherapy. Scents such as lavender and vanilla are calming to the mind. Using them can help the body relax (if you don’t have multiple chemical sensitivities, which may be exacerbated by the use of essential oils). Since leaving aromatherapy candles burning while sleeping is dangerous, add a few drops of essential oils to a room humidifier, spray the oils on your pillow, or leave the bottle open on your nightstand. Probably the most effective way to use aromatherapy is to rub small amounts under your nose and around the temples; then run your fingers across your scalp and around your neck in a relaxing self-massage.

Establish a routine. Start by deciding how much sleep you need. Set a time to fall asleep and a time to wake up. Stick to this schedule, even on weekends and holidays, so your body becomes accustomed to sleeping during those hours.

Turn down loud music and turn off televisions and computers about an hour before bed. You may wish to take a warm bath or shower also. (After you emerge from the water, your body temperature will lower, also promoting sleep.) Slip into comfortable, non-restrictive clothing before reading or doing something relaxing such as knitting or hand-sewing. Use aromatherapy and try to keep from thinking about work, in-laws, or the damage your dog did to your garden. This time is about relaxation.

The only other thing left to do is drift off to sleep.

Keep your feet warm. If your feet are cold, you might find it harder to fall asleep. Use socks or en a hot water bottle to ensure your feet are not the reason for your insomnia. A folded blanket at the end of the bed may help too.

Sleep on your right side. For people who traditionally sleep on their left side or back, this one might be a hard adjustment, but the rewards are manifold. Sleeping on your right side allows the blood being pumped from your heart to flow effortlessly throughout your body, while lying on your left side forces your heart to work harder because of the weight of the right lung placed upon it.

Similarly, sleeping on the right places less pressure on the digestive tract.

Sleep in complete darkness. Window treatments should be heavy and block out all light. Light and dark signal the brain when it is time to sleep and awaken. Allowing light into the bedroom during times you should be sleeping causes your brain think it is time to be awake.

Not all window treatments can block out everything, but wearing an eye mask can prevent almost 100 percent of light from interfering with your sleep.

Relax from toe to head. As you are ready to fall asleep, consciously relax your body starting with your toes and working your way up to your head. Include everything from knees to jaw and even eyes. You may be amazed at how much tension you are holding without being conscious of it.

Exercise regularly. This does not require mean running the Boston Marathon! Gentle exercises can be beneficial. Even allowing the body to stretch for a few moments in the morning and at night will get your blood moving and make your body feel better. Taking a gentle yoga class just once a week, for example, will give you ideas of ways to stretch at home and relax before bed. Set small goals for yourself and pay attention to how exercise makes you feel as you are doing it.

A great night’s sleep is not out of reach for people with FM. Following these simple steps will allow you to step into a restful night and wake up feeling relaxed and rested.

Sweet dreams!

NFA goes “LIVE” on KCAL 9 Los Angeles with “Fibro Focus”

19 Oct

Lynne Matallana, president and founder of the National Fibromyalgia Association, and Dr. Hernan Castro-Rueda, were in-studio guests Monday on KCAL 9 News, the Los Angeles affiliate of CBS,  to discuss fibromyalgia, its signs and its symptoms. They also talked about “Fibro Focus,” a free educational seminar on October 23 in Mission Viejo. The event will be held at 3 pm at the Norman P. Murray Community & Senior Center, 24932 Veterans Way, 92691.

Click here to watch the KCAL 9 video segment: For many, fibromyalgia is a complete pain KCAL 9 CBS- LA

 

Lynne Matallana and Dr. Hernan Castro-Rueda, 2nd & 3rd from left are interviewed on KCAL 9 news

 

 

Lynne in front of studio before her interview, crutches and all!

 

 

"Fibromyalgia is a real disease!"

 

 

Lynne is a real pro! Here she is getting mic'd

 

 

Dr. Castro-Rueda hopes to bring more awareness of FM to his fellow physicians

 

“Sophie, my furry caregiver” by Lynne Matallana

3 Sep

My dog Sophie is a 14-year old American Eskimo. Sophie was my “caregiver” during the first two years I had fibromyalgia. She was by my side the whole time I was in bed. She was and still is such a sweetheart!

This morning, she underwent surgery to have a tumor removed from her liver. So, now I get to be her caregiver. Unconditional love and support from animals are excellent for people with chronic illness.

In my book, “The Complete Idiot’s Guide to Fibromyalgia,” adopting or having a pet is one of the tips I offer for helping people with fibromyalgia deal with feelings of stress, loneliness and fear. Here’s the excerpt from Chapter 20, “Twenty-Five Quick and Easy Tips for Feeling Better”:

Research shows that pets have a therapeutic effect on their owners. They can actually reduce a person’s blood pressure, muscle tension, and other physical stress responses. They also have a positive effect on their owner’s mood. Animals are excellent companions who give unconditional love and don’t talk back. They bring out our nurturing spirit and help us feel more secure and safe. Studies have shown the pet owners live longer, healthier lives. So what kind of pet is best? Pick a pet that fits your interests, temperament, lifestyle, and environment. Anything from a tropical fish, dog, bunny rabbit, or even a horse will have that affect; a pet has the ability to divert your attention away from your pain and beyond yourself.

The NFA’s Twitter friends also shared their comments about their own furry friends and how they help with fibromyalgia symptoms:

@sueinge All I have to do is look into Pup’s eyes to find motivation to eat right & exercise. She NEEDS me to stay well & I’m happy 2 comply.

@cathyguske My cat will take rests with me, listen to my complaints, and not try to solve my problems – unconditional love!

@tyracreates My dog is a huge help to me in my battle with fibromyalgia.During flares,he stays by my side,I think he’s trying to comfort me.

UPDATE: Just got the call from the doctor. Sophie is out of surgery and did better than expected!

NFA Makes Call to Action in Response to FDA postponement of decision to approve sodium oxybate (Xyrem) for treatment of fibromyalgia

26 Aug

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.

NFA staffer, Jordan Aquino, pursues graduate degree while juggling four jobs

24 Aug

“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.

One Year Later: National Fibromyalgia Association’s Facebook Page Reaches Another Milestone with 46,000 Fans!

13 Aug

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:

  • 220,000 daily post views
  • 89% of fans are female
  • 9.8% of fans are male
  • Top 5 countries represented: US, UK, Canada, Australia, Spain

“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!

Atlanta Fibromyalgia Seminar “encouraging and motivational!”

4 Aug

Trena, center, with Martha Beck (l) and Lynne Matallana

Trena Gologan of Atlanta, GA attended last Tuesday night’s fibromyalgia coping seminar in downtown Atlanta with National Fibromyalgia Association president, Lynne Matallana and author/lifecoach, Martha Beck.

Trena shared her experience with FibroBlog:

How did you hear about the seminar? I heard about the seminar through the National Fibromyalgia Association. I have been working with the NFA since March/April 2009. I was able to get a proclamation from the Governor of Georgia declaring May 12 as National Fibromyalgia Awareness Day in GA through the help of NFA. The proclamation is now hanging in the hallway of the campus where I work.

Why did you attend the seminar? I attended the seminar last night because I want to help get FM Awareness out through events like this. I have been a public speaker for a little over 10 years and the only way I get better is from learning and listening to others. I enjoy helping others, and this is a way that I can reach out.

What did you think of the information presented? The information presented was encouraging and motivational. I was inspired.

What was the most important/significant thing you got from the presentation? The information presented wasn’t anything really new to me, but it was encouraging to hear the motivation from Martha and Lynne. It was great for my husband to attend and hear the information. It was a confirmation to him as to what I live through daily and how to handle life with a spouse who has fibromyalgia.

Learn something new? Martha shared with the group a technique on how to relieve some of the pain by focusing on love, then taking a deep breath. She continued to explain how to talk to the pain. I looked at it as if the pain was a confrontational person trying to cause problems, by calmly talking to the pain I would be able to slowly back it away. It is a technique I will try to involve in my daily life.

About Trena:
Trena is a medical school Admissions Coordinator based in Atlanta, Georgia. She was diagnosed with fibromyalgia in 2003. Visit Trena’s website at http://trenagologan.webs.com.

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