“In the 1990s, it was “Fibra what?,” said Shari Ferbert, 53, of Lake Forest, founder of AFFTER, which stands for Advocate for Firbromyalgia Funding, Treatment, Education & Research, a debilitating disease characterized by chronic body pain, fatigue and poor sleep.
That was one of the reason she started the public education nonprofit AFFTER, which held a Fall Funfest last Saturday at the Libertyville Civic Center. The key speaker was Dr. Jay Joshi, a physician with the National Pain Centers that has offices in Vernon Hills and Algonquin.
“I never connected all these things,” said Ferbert, who first read Devin Starland’s “Fibromyalgia and Chronic Myofascial Pain Syndrome: A Survival Manual,” that she still has at home.
“It described everything I had, every symptom, every little thing,” she said. So Ferbert began to read everything he could get her hands on and she started an organization right away to provide a forum for people to talk to each other and she formed a support group that meets in Antioch the first Saturday of each month from 10 a.m. to noon at 884 Main Street (Route 83) in Antioch. It’s open to all individuals who have chronic pain conditions, particularly Fibromyalgia, Chronic Fatigue and Lupus. It’s free but reservations are recommended because seating is limited. Call (847) 362-7807.
For Ferbert, relief has been just out of reach. “I’ve tried everything, water therapy, all kinds of medicine. Nothing,” she said. “I just keep occupied, I never sit. My therapy is helping people. Being pro-active is my therapy,” she said. Her group also holds an online support group at http://health.groups.yahoo.com/group/affter/join.
Her advocacy also targets doctors who for a long time did not know what to make of patients in their 30s, 40s, and 50s who looked healthy. “Here they had someone who looked healthy on the outside, but internally is a complete mess,” said Dr. Joshi.
But he faults the medical schools for not spending more time on pain management. “They don’t even spend a full day,” he said, “when they should be spending a month. It’s a symptom and disease process.” Dr. Joshi also blamed the media for pendulum swings in awareness through sensationalism.
Yet, he said, “More people suffer from chronic pain in America than heart disease, diabetes and cancer combined. But we still know very little about pain,” he said. Programs like Medicare, and even the secondary insurance people buy, make it worse when they won’t cover things like a massage.
“But they are very happy to cover Opiates,” he said, citing oxycontin. “It’s so convoluted. It’s crazy,” he said.
But it’s also a patient problem when all they are looking for is a medication for relief and not a solution to the problem, which may involve diet changes and other lifestyle changes like exercise. “The time the patients really need to be healthy is the time the patient least wants do it,” he said, because they are taking comfort in certain foods.
Debbie Davis, 51, of Gurnee, was diagnosed six years ago. “I think people who don’t have it need to be educated. To them it’s still all in your head,” she said as she described muscle aches and “always this sense of feeling fluish.”
Neila Bella, 39, of Barrington felt the same way. “It was frustrating at first,” said Bella, who has dealt with it for 15 years. “It was all n your head. How could you have pain all over. So you deal with it,” she said.
Ferbert is dealing with it by funding research through AFFTER (www.affter.org) and they have made three small grants so far. Last April, she went to Rush Presbyterian St. Luke’s Medical Center in Chicago and presented a $5,000 check to Dr. Robert Katz for use by Rheumatology Associates and their research team for a functional MRI study designed to gain more insight of cognitive function and pain processing in people with fibromyalgia.
“You have to know what is going on before you can treat it,” she said. “With the MRI you can see how the brain is processing pain. Each brain lights up in a different way. And the disease amplifies it,” she said.
“We need more awareness,” she said.