Lynne Matallana is President of the National Fibromyalgia Association (NFA) and is the Publisher and Editor-In-Chief of Fibromyalgia AWARE magazine.
"Without the continued help and support of organizations like ProHealth, the National Fibromyalgia Association (NFA) would not be in the position it is today to provide the kind of unique assistance that we give the fibromyalgia community. It is because of our working collaboration and the funding assistance that ProHealth has offered the NFA that we have together been able to better serve those patients in need."
ProHealth: You’ve done (and continue tirelessly to do) so much to raise awareness about fibromyalgia (FM). Please give a brief introduction to your personal struggle with FM, and how it led to the founding and building of the extremely effective National Fibromyalgia Association.
Lynne Matallana: Like many people with fibromyalgia I remember having some fibromyalgia symptoms as far back as childhood. I remember being told that I was “extra sensitive” and so I came to believe that everyone “hurt all the time” like I did! When I was in my 20’s I was diagnosed with IBS and then in my early 30’s endometriosis. In my mid 30’s I had a laparoscopy to remove some of the endometriosis, but I woke up during the surgery and later that night I started to have all of these “weird” and very unpleasant symptoms…pain everywhere, fatigue to the point of hardly even being able to catch my breath, and migraine headaches that felt like a bullet had ripped through my head. I spent one year trying to keep going, (seeing doctor after doctor, missing more and more work) and then two years in bed, continuing my search for a diagnosis. I finally found a doctor who gave me the diagnosis of fibromyalgia, and then I spent another year trying to get back on my feet and living life again. It was at this time that I met Karen Lee Richards over the internet and together we recognized that people with FM were suffering because of a lack of awareness and general misinformation. We recognized that many illnesses were “overlooked” and “underserved” until the patients themselves, organized and promoted education and information that was desperately needed! The need at that time was so great, I don’t think we even questioned “could we do it”, we just jumped in knowing that there were others like us, who were suffering and afraid, and we have never looked back! Today the National Fibromyalgia Association (NFA) is a product of many people’s dedication, devotion and passion. The organization may have grown out of our own personal frustrations with this illness, but the work that has been done over the past seven years has been accomplished by many compassionate individuals who recognized a desperate situation and were willing to put their hearts and souls into assuring that the millions of people who were suffering needlessly, will have hope for a better future.
ProHealth: You recently completed a charity bike ride as part of “Team Fibromyalgia” – what is the most important lesson or experience that came from participating in that event?
Lynne Matallana: Being a part of “Team Fibromyalgia” made me realize the value of “teamwork” and how important it is to be supported and to give support. I rode a tandem bike and my “teammate” was Art Zippel, the NFA’s creative director. A big, strong man at 6’2” he helped me to have the confidence that I could do this. He is an experienced distance bike rider and knowing we were on the same bike together helped me to not be as afraid of the challenge. There were times on the hills I thought I wouldn’t make it and he would reassure me and let me know that we just had to do one peddle at a time…no matter how long it took. Just like living with FM it is comforting to know that friends and family are there to help you face the challenges. Together you just have to take it one step at a time…realizing that (like Art said) “…life is a marathon not a sprint!” And then there was also another surprise realization… and that was that I could help support Art. I may have been the rider in the back, but I did play a role and without my efforts that bike wasn’t going anywhere! Every morning I was greeted by other bike riders, congratulating me on my efforts and it was being a part of this bigger team that also encouraged me to get back on that bike each day and to keep moving forward to reaching the finish line…one peddle at a time!
ProHealth: Most FM and CFS patients are concerned about protecting their health through cold and flu season, in addition to managing the extra stress of the holidays and starting a new year. Do you have any coping tips to share, any special precautions to take or lifestyle changes to try?
Lynne Matallana: I am always great at giving advice and terrible at living it! It is however, important, as I keep reminding myself, to listen to your body and to be aware of the signals your body is sending you. Especially as the season brings on extra stresses, you still must find ways to balance your life so that you don’t end up burned out and miserable, unable to enjoy the festivities and pleasures of the holidays. Remember if you are tired, you need to rest and ensure that you are getting enough sleep, eating right, and doing the things that you know help you to feel better (…even if all the decorations aren’t hung or the extra pies haven’t been cooked!). If you are dealing with more pain because of weather changes or the stress of the extra responsibilities of the holiday season, talk to your health care professional about additional treatment options, or schedule an extra massages, or practice those relaxation tricks you learned at your support group earlier in the year and learn to delegate (this one works well get things done!) Our bodies can only do so much, so learn to prioritize and make sure that your health is at the top of your holiday list!
ProHealth: In the recent issue of your pioneering magazine, Fibromyalgia AWARE, there is an article by Jacob Teitelbaum, M.D., about effective treatment approaches for FM, CFS, and MPS. He lists four main categories of problems that need to be treated: 1) Disordered sleep, 2) Hormonal deficiencies, 3) Unusual infections, and 4) Nutritional supplementation. In your experience, which of these issues have posed the greatest problems and challenges for you, and how have you overcome them?
Lynne Matallana: I believe that disordered sleep is one of the most crucial symptoms that a person with fibromyalgia must deal with. If your quality of sleep is poor, then it is going to affect your overall health and contribute negatively to a variety of your symptoms. Many of us with FM have a hard time falling asleep and then staying asleep, but fortunately there are many things you can do to help improve your sleep. Some suggestions include:
1. Do some sort of regular exercise everyday (but not before bed time!)
2. Try to avoid taking naps during the daytime so you will be sleepy at night.
3. Establish a routine of going to bed and waking up at approximately the same time every day.
4. Try to avoid watching TV in bed or discussing stressful subjects before you go to sleep.
5. Don’t eat right before going to bed, and avoid foods that are stimulating like caffeine, sugar, and alcohol.
6. Talk to your health-care professional about your medications and whether what you are taking may be acting as a stimulant. Discuss whether or not an herbal sleep aid is appropriate or if a prescription for sleeping pills is right for you.
7. Establish a routine for preparing to go to bed and make sure that the environment in your room is helpful to falling asleep…right temperature, darkness, no noises, etc.
8. Make sure your doctor is aware of your problems with sleep so he or she can make sure that you aren’t suffering from sleep apnea or other treatable sleep disorders
ProHealth: What other projects are you excited about for the New Year? With each new year comes greater hope that we are moving toward finding the causes and cures for FM and CFS – to which ProHealth is committed as a crucial part of our company’s mission.
Lynne Matallana: As you know, May 12 of each year is National Fibromyalgia Awareness Day. And every year the NFA with the help of its nationwide network of Support Groups, has launched several national programs to promote Awareness Day, including getting Proclamations from all levels of state and federal government. For Awareness Day 2005, we are equally excited to embark on our “Just Move It! Step-by-Step Together for Fibromyalgia Awareness” campaign. Our goal is to raise awareness of the very real and debilitating physical effects of fibromyalgia, while at the same time promote the benefits of physical activity and exercise in improving chronic pain and other fibromyalgia symptoms. And for the first time for Awareness Day, the NFA is partnering with several other national health and wellness organizations. We invite other companies and organizations who want to reach out to our community to share in this opportunity! For our other projects for the New Year, as always, we will continue to increase distribution of Fibromyalgia AWARE magazine, increase traffic and re-design our website (www.FMaware.org) to put more information for the more than 150,000 visitors who visit per month. By increasing the visibility of our magazine, we increase awareness and become closer and closer to better treatments and more research. We are on our way to being invisible no more!
ProHealth: The current issue of Fibromyalgia AWARE features an FM survivor’s story – “The Flow of Life” by Linda Farwell. She starts by sharing a piece of advice her parents received when they were first married, that “life is fluid.” Those words came to have great importance for Linda, and I imagine they have power for most people in the FM and CFS community (and beyond). Do you have any comments about that advice?
Lynne Matallana: “Life is fluid” is a very important lesson one needs to learn in order to be able to face the daily challenges of a chronic illness. Things change and because of this we have hope. What my life was when I first got sick is very different from what it is today…sometimes we think of change as being negative, but in reality it is a very positive thing. Change helps us to improve and grow emotionally and physically. With change we learn new things and become better and healthier individuals. Life has its ups and downs, but choosing to have a positive attitude and to keep the prospect of a better tomorrow in the forefront of our thoughts…we can become stronger then we ever imagined and life can be good, dispute our health problems.
ProHealth: Any news or announcements you’d like to share with our readers?
Lynne Matallana: We just want people with invisible illnesses to know that there is much more attention being paid to these chronic conditions and that we are learning more about the diagnosis and treatment every day. There is much hope that we will be able to have better treatment options in the not to distant future, so everyone needs to remain positive and we, the NFA will keep fighting for awareness and improved help!
Lynne Matallana is President of the National Fibromyalgia Association (NFA) and is the Publisher and Editor-In-Chief of Fibromyalgia AWARE magazine. The National Fibromyalgia Association has its offices at 2200 N. Glassell St., Suite A, Orange, CA 92865. Phone: (714) 921-0150. Website: www.FMaware.org.