Living with Fibromyalgia: What is Next?
When asked, most individuals with chronic pain like fibromyalgia express their desire to feel normal and to not feel stigmatized by their pain.
By: Lynne Kennedy Matallana, Founder & President of the NFA
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 Fibromyalgia, 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.
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 grandmothers generation, whose complaints were dismissed as one of those middle-aged women things, I personally value life too much not to fight for a quality of life I enjoy.
While most patients with Fibromyalgia 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 persons 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 to 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 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 patients 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 patients 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 captured my focus and for the last 10 years I have worked with dozens of experts to create a one-stop destination web portal that will help people in pain to more easily find personalized ways to move them forward in their journey to improved health and reduced pain. Never did I think it would take such a long time to decipher what it would take to provide such help for the pain community and to find the assistance and support necessary to make this dream of mine a reality.
The good news is that the future is no longer bleak and without promise. Instead, I believe that we are very close today (March 2020) to being able to launch the first phase of a one-stop, patient-centric, interactive destination web platform, that will provide new ways for the Fibromyalgia community and those dealing with other kinds of pain to find HELP, not just HOPE, to deal with their pain. I believe we are close to creating a new system that will provide effective, convenient and cost-saving health care assistance for people in pain.
I know how frustrated the pain and Fibromyalgia communities are. With all of the changes that have recently taken place in our health care system, at times our community has felt like we have been left on our own and that it is a battle to find caregivers who have an interest and the knowledge to help us. Please don’t despair. There is more attention being paid to chronic pain than at any other time in history.
There are doctors, researchers, patient advocates, the government and businesses that are working to improve the situation. And yes, I believe we are close to giving you the tools to better self-manage your pain and realize improvement like you have not had before.