Living with Fibromyalgia: What is Next?
“When asked, most individuals with chronic pain express their desire to feel “normal” and “to not feel stigmatized by their pain.”
By: Lynne Kennedy Matallana, Founder & Past President the NFA
Then:Yes, I am a chronic pain patient, yet more importantly, I am a human being. And though my fibromyalgia (FM) forces me on a daily basis to deal with a constellation of chronic symptoms that causes both physical and mental anguish, like millions of others with FM, I have to live with the fact that there are many people who give no credence to my condition, dismissing my suffering because the medical community is still learning about chronic pain and often fall short in their understanding of ways to diagnose and treat various kinds of pain conditions. So, after spending two years in bed (1995-1996), and still not knowing what to do, I realized that I had to create a life that would allow me to learn to live well despite my chronic pain.
Taking Charge: Pain is not new, so I often wondered how the medical community could not accept my pain as being very real. I was made to feel like I was supposed to just quietly disappear, so others wouldn’t have to listen to my complaints. Like the women of my grandmother’s generation, whose complaints were dismissed as one of those “middle-aged women’s things,” I personally value life too much not to fight for a quality of life I enjoy. While most patients with FM do not have the opportunity to keep searching for answers, I had the emotional and financial support that allowed me to continue to seek out help. I learned that it was a multidisciplinary approach which ended up making it possible that I could feel “normal” again!Though there were times when I began to lose faith, and believed I would always have pain, its nagging urged me on as a constant reminder that there was no room for self-doubt. My pain was real, and it was something that could not be ignored. Pain is more than a symptom, it is an illness, not a punishment, and so medical answers had to exist. One of the secrets I learned is that each person’s pain is a unique experience and one must learn how to customize his or her own “program,” utilizing a variety of treatments, tools, medical devices and psychological approaches, which will help provide the relief that had been illusive in the past.
The Long Journey: After two years and thirty-seven doctors, I finally found my compassionate, open-minded, knowledgeable doctor, who shared with me that “yes!” I would get better! That statement changed the course of my life. Finally someone believed in me and was willing to help me! I realized that my quality of life was going to be influenced by our doctor-patient relationship and I had to accept that it was going to take time to build this relationship. In order to make this work, both of us had to make a commitment to work hard and respect and trust each other to do our individual parts. I couldn’t have expectations that my doctor was going to “cure me”, and my doctor couldn’t expect me “not share my suffering” with him. Pain that is not validated causes one to feel guilt, fear, and hopelessness, which in turn can cause disillusionment and depression. Fibromyalgia is a central nervous system disorder that touches millions of people every day. As a person with pain, I can live with the fact that I have an illness that causes pain, but I can’t live with the knowledge that others have dismissed my pain and believe that the answer is to just ignore my symptoms. Research studies over the past 30 years have proven that by using an integrated approach to treat pain can be extremely successful in reducing symptoms. With this knowledge it is imperative that patients and health care providers alike have accessibility to information and resources that provide pain patients with ease of access to new evidenced based options for treating their pain, resulting in improved health outcomes.
The Future: The development and FDA approval of three medications to treat the symptoms of fibromyalgia and chronic pain provided a spring board for awareness and a better understanding of the science behind pain. Today, very few people in the US have not heard of fibromyalgia or do not know what it is, and are now usually more knowledgeable about the illness because they know someone personally who is suffering with the disease. The advent of these medicines occurred during one of the more difficult economic times our country has experienced. The uncertainty of what kind of medical care is going to exist with the changes to “Obama Care” has left many patients and their families grievously concerned about what the future has to offer.
Living with a chronic illness is difficult at best, but with so many other elements of care also uncertain, it has become painfully apparent that the need for assistance has become much more than just building general awareness and providing patient’s with updated information. After much research, it became apparent that there were many individuals and companies that had also been keenly aware of the fact that new treatment options and improved access to care had to be developed and made available to those who make up the chronic pain community. With a growing interest in complementary medicine, the use of cognitive behavioral therapies, the technological advances that improved both patient and health care provider communication and interactive support, the development of new medical devices and pharmaceutical products, along with the explosion of social marketing, which was going to make it much easier for patient’s to be able to find out about these new avenues of care…the only thing missing was a way to harness these efforts into a comprehensive and complementary venue to provide functional ease and time saving access. This realization became the initial basis for the development of the “Community Pain Center”, a one-stop destination web portal providing the offerings of dozens of independent companies, products and services, along with “Over the Top” streaming videos, airing in the communities’ eHealthTV theater, all well-orchestrated into a “connected” and interactive site easily accessed by millions of people worldwide. Each registered site user will receive a social media utility, called “My Medical Vault” where they can store all of their personal medical information, contacts, note medical experiences, and keep links to special assessment tools and symptom trackers.
The future is no longer bleak and without promise. Instead, with the collaboration of the NFA and other dozens of other non-profit organizations working to help people living with chronic pain, and the development and launch of Community Health Focus, Inc.’s, multi-dimensional, interactive, patient centric, patient motivating and assisting web site using the newest internet and mobile technology… people with chronic pain will find, “What they have been hoping for.” Community Health Focus, Inc. is creating the next generation of internet based health and wellness assistance, changing the paradigm for health care delivery. Lynne Kennedy Matallana believes in and is passionate about the importance of collaboration between the non-profit organizations, the medical community and the business sector. She states her belief as follows: “The time has come where it is imperative that we all start to work together in order to help the millions of men, women and children living with chronic pain. We have waited long enough to have the kind of help that the “Community Pain Center” will provide. When the FM community and those dealing with other kinds of pain can utilize this one stop, patient centric, interactive destination web platform, I believe we will have created a new system that will provide effective, convenient and cost saving health care.”