By the time patients get to the fibromyalgia treatment program at the Mayo Clinic in Jacksonville, Florida, they typically have tried all the approved drugs for the disorder and are tired of the pain, the fatigue, the depression, and the skepticism.
"Patients tell me it's like having the flu every day," said Barbara Bruce, PhD, a behavioral psychologist who developed the program and coauthored the Mayo Clinic Guide to Fibromyalgia: Strategies to Take Back Your Life, which addresses the latest techniques for managing symptoms.
The stories are similar for people with fibromyalgia, who make up about 2% of the population in the United States, according to the Centers for Disease Control and Prevention.
With the traditional fee-for-service pay structure, a patient sees one doctor after another in individual office visits, is frequently bounced between rheumatology and primary care, and is often told by frustrated providers that there's nothing they can do.
Many patients have been told for years — by friends, by family, by clinicians — that their symptoms are imaginary or that they are lazy or drug-seeking, Bruce told Medscape Medical News. And because diagnostic tests are often negative, some start to wonder if they are imagining the symptoms.
Those are the first myths that clinicians at the clinic address when patients are diagnosed with fibromyalgia. "We tell them this is real. We know what to do. We have the tools that can make them feel better," she explained.
Two-Day Informational Clinic
There is increasing recognition that multidisciplinary treatment models that address physical symptoms of the disease, as well as behavioral and psychological components, are effective.
In Jacksonville, after patients are diagnosed with fibromyalgia, they are invited to participate in an intensive 2-day 16-hour clinic, taught by Bruce and two nurse specialists, who provide basic information on fibromyalgia, cover some cognitive behavioral therapy, and give patients tools to decrease pain and fatigue.
Groups of 12 to 15 patients, their friends, and family members learn together and listen to stories from others, which can validate a patient's feelings, Bruce explained.
After the clinic, patients are monitored for function, depression, and pain-catastrophizing levels.
"We contact them in 3 months and there's significant improvement. When we contact them at 6 months, their scores are maintained," she said.
At intake, 79.4% of patients with fibromyalgia met the clinical threshold for depression. After the clinic intervention, rates were significantly lower: 52.5% at 3 months and 53.9% at 6 months, a member of Bruce's research team, Jessica Gehin, BSN, RN, reported at the American College of Rheumatology 2019 Annual Meeting in Atlanta.
Group Dynamic Important
Dan Clauw, MD, from the University of Michigan in Ann Arbor, said that when he was actively treating patients with fibromyalgia, he came to realize that group education has several advantages.
For one thing, physicians cannot devote the necessary time in one-on-one office visits, so group education sessions are more practical. And for another, the group setting helps patients teach each other, he told Medscape Medical News.
For 15 years, Clauw held twice-monthly, 2-hour education seminars to provide groups of 20 to 30 patients and their families with the latest information about fibromyalgia and other pain syndromes and to offer guidance on symptom management strategies.
He said he now uses the group dynamic in his lectures as director of the University of Michigan Chronic Pain and Fatigue Research Center, and asks his audiences whether anyone has tapered opioids, a treatment found to be not very effective for fibromyalgia. Then he asks what happens to pain levels after tapering.
Only once or twice has anyone said their pain got worse. In most cases, pain stayed the same or, in a few cases, actually got better, he reported.
"It's an entirely different thing for me to stand up and give people statistics and data than for two or three people raising their hands, saying they never would have believed that when they came off opioids, their pain would get better. But that's what happens," Clauw said.
In his lectures, he tries to motivate patients to turn to FibroGuide, a website developed by the University of Michigan that details a self-care approach for people living with fibromyalgia.
It is critical to get patients actively involved in their own pain management, he said. Just as clinicians treating diabetes don't send patients home with only insulin and syringes, physicians treating fibromyalgia need to work to engage patients in managing their own care.
Clauw advocates for exercise programs or the practice of mindfulness or yoga.
Education, Then Support
Nurse practitioner Christine Stamatos, DNP, described her program at the Fibromyalgia Wellness Center in the Northwell Health Division of Rheumatology in Great Neck, New York.
She delivers a lecture twice a month, and patients must attend a talk before they schedule an appointment with her. At the lecture, patients submit a 12-page intake form with information on previous treatments, family history, and exercise history, and she reviews it to make sure all necessary lab work has been completed.
Once patients go through the system, they can participate in an ongoing support group — now led by patients — twice a month.
So far, 133 patients have gone through the program. Although clinical results aren't yet available, she said feedback has been overwhelmingly positive.
From the beginning, she tells patients that the total relief of symptoms is almost never achieved. The pain might not get better; the goal is improvement in health-related quality of life, function, and symptom burden.
There is no quick fix, she explained. "Until you set that expectation correctly, they are always going to be on the hunt for that magic pill. They should also know that symptoms will never kill them."
The first step should be to address issues such as sleep disorders. "If you don't fix sleep and you don't fix mood," she said, "nothing you do for these patients is going to work."
Typically, when patients report symptoms consistent with fibromyalgia, they are referred to a rheumatologist to exclude other disorders or diseases, said Leslie Crofford, MD, from the Vanderbilt University Medical Center in Nashville, Tennessee.
But when fibromyalgia is confirmed, most rheumatologists do not treat patients over the long term; instead, patients are referred back to primary care, she explained.
That's a practical solution for most, because there are a limited number of rheumatologists and many systemic, autoimmune, and inflammatory diseases that demand medication management. As it is, it can often take 6 months to get an appointment with a rheumatologist, she said.
Patients would benefit if more practices adopted a multidisciplinary, targeted management strategy, she added.
"The problem is that doctors are trained to give people drugs, and drugs don't work very well with this condition," she said. "You're going to get a lot better outcomes with some of these treatment models."
American College of Rheumatology (ACR) 2019 Annual Meeting: Abstract 233 and poster 3S052. Presented November 10, 2019.
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Cite this: Patients With Fibromyalgia Find Relief in Group Treatment - Medscape - Dec 04, 2019.
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