Repost: Why Bother Spreading Fibromyalgia Awareness?

During the maintenance process yesterday, Blogger ate my post! Regrettably, I couldn't retrieve it nor upload the repost until today.

Hello Friends.

Today is Fibromyalgia Awareness Day and I wanted to write something meaningful and encouraging for all those who suffer from this debilitating illness as well as informative and educational for those who have family members or friends affected by it. I have all these ideas about spreading awareness from sharing articles to personal experiences but it all seems futile. I mean, why bother? How do I spread awareness effectively when so many in the medical community continue to treat us like second class citizens or worse criminals on trial. Any progress we make as individuals suffering from fibromyalgia will be negated so long as physicians do not recognize the severity of this illness.

My primary care physician referred me to a neurologist for myoclonic jerks. The consultation took place last Tuesday afternoon. Had I known what I was going to encounter during the appointment, I would have cancelled it rather than endure the abuse I was subjected to. I left feeling unworthy and devalued and was at the point where I NEVER wanted to receive treatment by a physician again. I also wanted to quit taking all of my medications. All of them. Of course, now that the dust has settled, I realize how unrealistic my emotional reaction was. Eventually I will have to see another doctor and obviously discontinuing medications to manage my symptoms is not an option I can afford.

Between my fits of anger, disappointment and resentment towards certain members of the medical community yesterday, I stumbled upon the following presentation by Dr. Sean Mackey, assistant professor of anesthesia at the Standford University Medical Center. In his presentation, he discusses the current understanding of fibromyalgia, its pathology, diagnosis and treatment. After watching it, my hope and belief in the medical community was renewed. I ask you to please take the time to watch it as well and to pass it along in support of Fibromyalgia Awareness.

An Update on Fibromyalgia by AllThingsScience

I also came across some eye-opening statistics. Do you know that between 3-6 million Americans suffer from fibromyalgia, yet the NIH only funds $9 million in research compared to 3,630 Americans suffering from West Nile Virus with $46 million in allocated research funds? Research Funding Comparison

To answer my own question, why bother spreading awareness when it seems futile? I think the answer is clear. We need to advocate for our own health to ensure - scratch that, demand proper treatment by the medical community. I cannot emphasize the importance of finding a doctor who listens and respects you and hasn't forgotten the Hippocratic Oath of DO NO HARM. We also need to demand more research money is spent towards finding a cure for fibromyalgia. Last, we need to educate the masses. Please watch Dr. Mackey's presentation.  Fibromyalgia is more than just aches, pains and ongoing fatigue!

Thanks for letting me share Fibromyalgia Awareness Day with you!

Truly, Britta