Fibromyalgia is a central nervous system disorder that touches millions of people every day. I take a host of supplements and pills that only take the edge off the pain. In fact, I’ve lived with this for so long that I don’t remember what it feels like not to have pain, and that scares me. Sometimes when I say it, I’m thoroughly exhausted, others not so much. 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. With no end in sight and only minor times where it is lessened. My husband and I were in Ocean City enjoying a walk down the boardwalk. Nov 02, 2019 12:00pm. “It’s only Fibromyalgia.” It wasn’t Cancer, but it was no less insidious. The National Fibromyalgia Association Lyons KS, Jones KD, Bennett RM, Hiatt SO, Sayer AG. The advent of these medicines occurred during one of the more difficult economic times our country has experienced. It wasn’t until I had my first flare up that I had to believe the truth. For awhile, I lived in denial that I had fibromyalgia. 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. That statement changed the course of my life. 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. They help me as much as they can and sometimes do more than they should. Now I track everything I do, everything I eat. It's like having your nervous system turned up to 11. For awhile, I lived in denial that I had fibromyalgia. That night, I couldn’t sleep, my entire body vibrated with pain and nothing made it go away. Here's a list of do's and don’ts to help managing fibromyalgia pain and fatigue effectively. Both you and your loved one will have to come to terms with changes in your life. 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. For example, say you used to go for bike rides, do some hiking, maybe take a canoe out on the river. It terrifies me that one day I might get to the point where I can't stand it anymore. It wasn’t until I had my first flare up that I had to believe the truth. I will never stop. Pain is more than a symptom, it is an illness, not a punishment, and so medical answers had to exist.