Robin Skinner lives with the disease and fought her health insurance company for the only drug approved to treat it.

"I used to just be able to pop out of the bed and go about my day; do my dishes, sweep my floors. I can't just pop out of bed anymore," explained Skinner.

Everything she does now causes her pain. Skinner has lived with Fibromyalgia for over 20 years.

"It was two years before I became diagnosed that my arms and my fingers, my hands started getting severe pain. And my shoulders and my back and my legs," described Skinner.

Fibromyalgia is a disease of the nervous system that causes widespread pain in the muscles and joints throughout the body. It is estimated to affect more than nine million Americans, mostly women. Patients, like Skinner, living with Fibromyalgia often experience fatigue, loss of sleep, headaches and numbness.

Last June the FDA approved prescription Pregabalin, more commonly known as Lyrica, in the fight against Fibromyalgia. To date, Lyrica remains the only drug-therapy approved in treating the disease, yet many health insurance companies won't pay for it.

"Lyrica, on a day-to-day cost, is fairly inexpensive. Number one, number two, compared to other medication, Lyrica is unique. Whether you're using a 25 milligram capsule or a 300 milligram capsule, it costs exactly the same amount of money," explained Dr. Osvaldo Acosta, pain specialist.

Dr. Acosta has his own story when it comes to Fibromyalgia. For the last 19 years he's lived with the disease.

"I went to medical school specifically because I was in so much pain and I wanted to find out what was wrong with me," explained Dr. Acosta.

Properly diagnosing the disease can be difficult. No test can pinpoint Fibromyalgia. Doctors typically use a battery of tests to rule out any other explanation for the severe pain patients suffer.

Making the diagnosis more difficult, many in the medical community don't consider Fibromyalgia a real medical condition, including some of Skinner's own doctors.

"Fibromyalgia for many years became a waste basket diagnosis," said Dr. Acosta.

Skinner said she broke down in tears when her doctor said the Fibromyalgia was in her head and not real.

"You just want to shake them. I mean you just want to get a hold of them and say, 'No it's not. If you could feel me, if you could feel my pain, you wouldn't say that'," said Skinner.

After being shuffled between nine different doctors, who couldn't find the root to her pain, Skinner found Dr. Acosta. This back and forth lasted for two years. All the while, she wasn't getting treatment.

"Since most of them didn't know what I had, I got no treatment. They told me to go home and take Tylenol. And Tylenol wasn't working," explained Skinner. "I guess we have to show up with our walkers and our canes and be right in front of them to show them we're real. We are the ones with the disease. We have Fibromyalgia. We can't walk the way we use to walk. We can't get up out of the bed the way we use to get up out of the bed. This is real, it's not in our heads."

Skinner isn't alone. According to the National Fibromyalgia Association, it can take up to five years to receive proper diagnosis, making treatment more difficult.