I started reading 100 Questions & Answers About Fibromyalgia which is written by Sharon Ostalecki, PhD and Martin S. Tamler, MD, FAAPMR. Sharon has lived with Fibromyalgia and it’s been pretty cool to get the perspective of someone who has deal with the problem. I’m barely into the book, but I’ve learned some very interesting things.
First, Fibromyalgia is not technically a disease; a disease has known causes and the symptom process is understood. Fibromyalgia is a syndrome – a group of signs and symptoms that characterize a disorder. Basically, they don’t know enough about it to consider it a disease.
Second, Fibromyalgia is nicknamed “The Invisible Disease” because it’s not perceptible to others. Christen doesn’t look sick, but she is. Sometimes it’s easy to forget that. Sharon had to deal with the same thing:
Living with fibromyalgia can be difficult for not only do we live with pain, but many of us are handed a cocktail of condescension and doubts about our limitations. The crisis of confidence that follows can be contagious and soon affects every part of our being.
It also seems that our difficulty in getting a diagnosis was something that most people with fibromyalgia have dealt with.
Today most patients see between 5 and 7 physicians to reach a diagnosis and, on average, it takes 1.9 to 2.7 years to reach a diagnosis. I was not that lucky. Before I was diagnosed I had the pleasure of meeting 37 medical practitioners and spent 12 years searching for a label to the pain that was my constant companion.
Sharon and Martin, the authors, have been lecturing internationally on fibromyalgia. They say that the questions that they are asked were often the same. What causes fibromyalgia? Is there a cure? How do I stop the pain? Why does it hurt so much? All questions I have, and all questions which I am excited to finally get answered. I’m also pleased to see that Christen and I are on the right course:
So, when your journey with fibromyalgia starts, it is essential that you have the knowledge to navigate the maze of medical tests and terms, the familiarity with the newest medications, and the skills to communicate with your physician.
I was also please to find out that Christen is already on the latest FDA approved medications for treatment of fibromyalgia (Lyrica and Cymbalta). It was also good to hear that there is current research underway and additional (and hopefully even better) medications are on the way. Maybe there’s a light at the end of the tunnel after all. Even if it is a long tunnel.