Opinion: Fibromyalgia patients seek acceptance, not ignorance

By Lannette Johnson

Barriers to care in the fibromyalgia population are many. Not only do we consistently deal with physicians who refuse to believe that our condition is real, and insurance companies whose drug formularies dont include FDA-approved medications for FM treatment, we also deal with the high costs of this complicated condition to our careers, family lives and our mental health.

Before I wrote this article, I checked to see if there were any other references to fibromyalgia on the Health Policy Solutions website. There were none. And only two articles that specifically mentioned chronic pain patients. Is this due to a negative impression of FM patients as a whole? Or due to the fact that no one had thought to discuss how health care policies affect chronic pain patients?

May 12th is Fibromyalgia Awareness Day, an opportunity to shed a little light on this condition, not only as a patient, but as a patient advocate and fibromyalgia educator.

Due to recent medical research by such people as Patrick Wood, M.D., and Daniel Clauw, M.D., we can debunk the myth that fibromyalgia is not a true illness. Functional magnetic resonance imaging studies clearly show the differences between pain responses in the brains of FM patients compared to normal controls. The lack of delta wave sleep in FM patients can easily be measured, and its widely known that non-restorative sleep is a factor in a patients increased pain sensitivity.

I have been relatively lucky as a fibromyalgia patient. Ive never been accused of being a drug-seeker, nor have I ever been told by a physician that my condition was all in my head. I have tried two of the three FDA-approved medications for fibromyalgia, even though my insurance company would not cover the cost. I have tried supplements, vitamins, chiropractic care and many other complementary alternative medicine modalities. Some things have helped; others have increased my pain and exhaustion.

I am fortunate to be married to a man who completely supports me, who sees my daily struggles with this condition and does not dismiss them as something unreal or fake. I am lucky to have an informed health care team that truly cares about my well-being. Most other FM patients I know are not as fortunate.

I will join Sen. Mark Udall in Washington, D.C., next month for the Colorado Capital Conference, and my hope is for a few minutes of face time with our nations decision-makers. I would most like to meet Rep. Diana DeGette because she has a long history in Congress of working to improve health care policy. As our elected officials look for more and more reasons to cut funding to important programs like Medicaid and Medicare, I feel its necessary to bring the focus back to where it should be on the patient, not the budget.

On Fibromyalgia Awareness Day, I ask that each of you take a moment to think of those millions of patients who live with fibromyalgia and other chronic pain conditions, and to consider our needs, not only for quality health care, but for acceptance.

Lannette Johnson is the founder and executive director of the Colorado Fibromyalgia Network, and sits on the executive committee of the National Fibromyalgia & Chronic Pain Association.

Opinions communicated in Solutions represent the view of individual authors, and may not reflect the position of the University of Colorado Denver or the University of Colorado system.