L-R, Elizabeth Newson, Victor Lambert, Valerie Mells, Valerie Dorn, Laquanda Brown and Nakia Frazier
BY RAVEN JOY SHONEL, Staff Writer
ST. PETERSBURG – The sixth annual Keep Hope Alive Fibromyalgia Awareness Day event got underway last month at Pinecrest Park Church of Christ. Although the numbers were few, those in attendance got an education in awareness.
Valerie Dorn, president and founder of the Keep Hope Alive Fibromyalgia Support Group, has suffered with the disease for more than 20 years. After years of being misdiagnosed, she was finally told she had fibromyalgia.
“I don’t want anyone to go through what I’ve gone through, so this is my reason and purpose—to get the word out that fibromyalgia is a condition that can be sometimes over looked,” said Dorn.
A disorder marked by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way the brain processes pain signals.
Symptoms sometimes begin after physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.
“Some days I have pain all over my body. There was a time I did not know what was going on,” said Dorn.
Instead of sending her to a specialist, her doctor tried to treat her for three years. Dorn encourages anyone with fibromyalgia symptoms to get a second opinion if their doctor is not willing to refer them to a specialist.
“Please go to a rheumatologist. Don’t stop at a family doctor because you’ll end up like me. If it’s caught early it is more manageable, it’s more bearable,” she said.
Fibromyalgia came into the forefront of American culture in 2008 when the Food and Drug Association approved Lyrica, a drug usually given to diabetics for pain management, to treat chronic pain associated with the disease.
Some doctors are still skeptical of branding fibromyalgia a disease and with no test to prove it exists, some doctors have been reluctant over the years to diagnose patients.
According to the National Fibromyalgia and Chronic Pain Association, it’s estimated that it has taken an average of five years for a person with fibromyalgia to receive an accurate diagnosis. Many fibromyalgia symptoms overlap other conditions such rheumatoid arthritis or lupus, and leads to extensive investigative costs and frustration for both the doctor and the patient.
Drugs are now approved to help sufferers deal with some of the symptoms of the disease, but Dorn warns that taking them could lead to more problems as most of the medications have rather severe side effects. She instead has changed her diet, started an exercise regiment, acupuncture, meditation and prayer.
The medication she was on caused her to gain 60 pounds, gave her severe stomach pains and drained her energy so much she would stay in bed all day.
“I deal with the pain through my faith. Anything positive, anything good, my faith is first and foremost,” she revealed.
With eight members in her support group, Keep Hope Alive is now a 501(c)(3) and will start fundraising efforts to bring awareness to fibromyalgia and help group members cope with the life-altering disease.
Secretary Valerie Mells was diagnosed five years ago with the fibromyalgia but thinks she’s had the disease for at least 20 years. Dorn encouraged her to find a doctor that would listen and work with her.
“The pain is a pain you can’t describe,” said Mells, who was first diagnosed with rheumatoid arthritis.
Another symptom of the disease is having problems with cognition. Both Dorn and Mells said they experience “fibro fog,” which is impaired memory and concentration.
“It can be right on the tip of your tongue and you can’t say it,” said Mells.
Nakia Frazier was diagnosed with the disease after suffering for many years. And advisor to the support group, she describes the pain as “radiating.”
“Bending down, laying a certain way, water to hot… it hurts. You have to pace yourself and keep praying that God will pull you through,” said Frazier.
She continually told her doctor of her symptoms, but to avail. One day a nurse suggested to the doctor that Frazier could be suffering from fibromyalgia. Her doctor studied the disease and sent her to a rheumatologist.
Deciding to stop taking prescribed medication, she handles the pain naturally. With a daily dose of her homemade detoxification water, a diet full of greens, salads and no beef, she has not only been able to manage the pain, but she’s also lost 32 pounds.
Dorn feels that information is power and continues to study and research the disease so she can pass along information to those suffering. She’s asking people to stop suffering in silence and join her support group.
“We do meditation, and we try to strengthen the mind,” said Dorn. “We pray for each other, encourage one another and do exercises together. We’re not miracle workers, but we strengthen people as a group to keep going and not to give up.”
For more information about the support group, you can email Dorn at firstname.lastname@example.org.