Thursday, July 29, 2010

Juvenile Fibromyalgia

     My daughter will be fifteen this week.  It has been nearly a year since she was diagnosed with Fibromyalgia.  Listening to her symptoms, I kept hoping they were just growing pains or the flu.  I kept hoping, but I knew only too well it was Fibromyalgia. 

     Juvenile fibromyalgia ia rare, but so is my daughter.  She is gifted with words and writes stories and poems that rival published authors.  She is adept at seeing the true beauty in everything.  She photographs ordinary objects and shows us their true essence.  She manages to bring out the best in people, even when they are suffering.

     Juvenile Fibromyalgia is rare, but our medical experience is not.  The pediatrician doesn't know anything about this disease.  The suggested rheumotologist only works with adults and feels uncomfortable treating a teenager.  The internist feels the same way.  The juvenile reumotologist doesn't believe in the disease and tells her to exercise more, go to counseling, and stop taking naps. 

     What happened to the Hippocratic Oath to not cause any harm?  My daughter has gone from a 4.0 honors student to dropping out of school because of the pain and fatigue.  Telling her to work through the pain because "it is only pain" does not help her.  Exercise is good, but so is being able to complete daily activities without crashing.

     When questioning her about her family life and learning she had a pet turtle, the rheumotologist asked her if she licked the turtle shell!!!  Really???  This is what you think a fifteen-year-old honor student would do?  She is supposed to be an expert on this disease and children.    

     Adults with Fibromyalgia take medications to take the edge off the pain so they can function.  Why is it different for a child?  I believe in taking the least amount of medication possible, but kids and teens feel pain, too.  Unfortunately the pain won't wait until her magical 18th birthday to suddenly begin.  It is naive of adults to believe otherwise.