National Fibromyalgia Association Coping Seminar
I was one of the lucky people who was able to attend the National Fibromyalgia Association (NFA)’s “Fibromyalgia Coping Seminar” in Seattle. The two speakers were Lynne Matallana, NFA President and Founder and Martha Beck, Best-selling author and Life Coach. They both have had fibromyalgia for years. I will have future blog posts that elaborate more about them individually, but here I want to share things about the overall event.
Matallana opened with some basic information about fibromyalgia. Did you realize 5 million Americans suffer from it? That is 2% of the country’s population! For those of you out there who feel alone with your diagnosis, don’t anymore – just unite!
She went on to tell her story and explain that a combination of education, medication and lifestyle changes are often the best approach to managing fibromyalgia. One of my favorite quotes of the night was Matallana saying, “If you are educated you have more power.” This is something I completely agree with and I know that as more new research and information is released I feel more empowered.
Matallana spoke of the new set of diagnostic criteria for fibromyalgia that the American College of Rheumatology (ACR) published in the May 2010 issue of its journal Arthritis Care & Research. She explained that patients would be asked to fill out a paper and pencil questionnaire of 43 questions, ranking each item from 0-3. After an algorithm is run, a diagnosis would be made. The current part of the diagnosis where a patient receives a tender point exam would be completely removed. Matallana said the NFA thinks it is not quite time to change the criteria, but that this suggested criteria should be used as a vessel for discussion. Part of the NFA’s concern lies in the fact that the current diagnostic criteria has been used for all the current and past research, if that is changed they scientific community won’t be able to build upon those same research findings.
Beck was introduced and she shared three techniques for managing fibromyalgia – physical and mental visualization, meditation and deep breathing exercises. When starting new things she suggested to, “start low, go slow,” track your symptoms and remember that knowledge is power. She encouraged all of us to, “find your bucket list and make it happen.” Beck wanted us to aim high and achieve lots, but don’t have any doubts that she was being realistic. She also said to, “be frank about your pain, ask for help when you need it and discuss your communication problems openly.” All very motivational! Both speakers encouraged people with fibromyalgia to get out of bed and move around to have lower pain levels, less atrophied muscles and to gain their lives back.
I would highly encourage all of you to attend a NFA event if you can, the experience is wonderful! Did I mention there were delicious cookies? Stay tuned for more information about the seminar, Matallana and Beck as well as my one-on-one interview with Matallana!