Overcoming Barriers to Managing Fibromyalgia

Fibromyalgia Syndrome (FMS) remains a challenge in part because patients expect that their problem will be obvious and modern medicine will have a fix for it. Meanwhile, practitioners feel they should be able to provide a discrete diagnosis and prescribe a specific remedy. Unfortunately, there are still no simple solutions for either patients or healthcare providers, according to an overview article in Managed Care magazine.

In the article, writer Bob Kirsch observes, “It is not for every illness that the FDA recommends massage and emotional support. But fibromyalgia is not like most other illnesses. First, it should be said that there is no longer any question about whether fibromyalgia syndrome is a specific illness — the FDA itself states that these are patients who have gone through a change in the way their brains perceive pain” [Kirsch 2011].

A Challenging Condition

Agents providing pain relief are an important component of therapy for FMS; however, because comorbidities play a significant role, the FDA also considers sleep medications, antidepressants, muscle relaxants, and antiseizure medications as being important. And, FDA-approved medications are just one part of the therapeutic milieu, which also might include emotional support, walking, jogging, biking, gently stretching muscles, water therapy, massage, yoga, and other exercises.

Commenting in the overview article, Connie Luedtke, RN, a nursing supervisor at the Mayo Clinic, stresses the importance of early diagnosis before patients respond to their symptoms by decreasing exercise and activities and become deconditioned. In her experience it takes primary care providers an average of 5 years to make a firm diagnosis of FMS.

Luedtke further notes that the American College of Rheumatology says FMS develops in from 2% to 4% of the population, predominantly in women. “So, prevalence is considerable and providers should be alert to the presence of the illness,” she says.

Taming the Stress of FMS Duress

According to Michael Golinkoff, PhD, chief clinical officer at Aetna Behavioral Health, there is a very high comorbidity of serious depression in patients with FMS. “Even with patients who do not meet diagnostic criteria for depression, we often find that there are many psychological symptoms present,” he says. Fibromyalgia can be very stressful, and debilitating, so addressing such suffering is important and it is critical to refer patients to appropriate psychological therapies.

Research has shown cognitive behavioral therapy offers significant benefits, Golinkoff observes; albeit, it confers only modest short- to long-term pain reduction. Psychological therapies can be helpful in reducing sleep problems, depression, and catastrophizing, while improving functional status. Group therapy as well as individual psychotherapy can be effective.

As much as anything, psychological approaches may help to empower patients for better self-management of their disease. An advantage of group therapy is helping patients to feel that they are not alone and to learn from the experiences of fellow patients with FMS. When patients receive psychological therapy, “we find symptoms not necessarily associated with depression but associated directly with fibromyalgia improve,” Golinkoff says.

Off The Beaten Path

Patients may be interested in unconventional — “natural” or complementary medicine — approaches to manage their FMS. Some may wish to pursue what seem like unscientific approaches; such as, avoiding all sugar.

“Too often the doctor’s stance is: ‘I know the right answer,’” observes Bill Clark, MD, a lecturer at Harvard Medical School. While other approaches may be more productive in the long run, Clark advises, “Keep in mind that the situation is not urgent. Focus on staying in a relationship with the patient and building a reserve of trust for the future.”

Strengthening the physician-patient relationship is more helpful to the patient and also may be more rewarding, with less frustration, for the healthcare provider. Clark says, “Every patient wants a miracle cure and every doctor wants to prescribe it. It is one thing to take out an appendix; it is another to wrestle with the symptoms and the mystery of fibromyalgia, an illness that is endlessly distressing for patients.”

Helping Patients Help Themselves

Luedtke emphasizes that patients with FMS may need extra time during visits. “If patients feel that they have been listened to, that their experience has been validated, they are more likely to trust the recommendations that are given,” she says. “Patients who don’t trust their providers are far more likely to keep using medical resources to find the cause of their symptoms and to keep searching for the so-called magical cure.” Luedtke suggests 4 ways that healthcare providers can help patients with FMS…

1. Let patients know you understand that their pain and fatigue are real. All too often these patients have been accused of being crazy, lazy, or both; meanwhile, many fear they have some devastating illness.
2. Explain it is essential that the patient not wallow in pain and fatigue. Patients who dwell on their symptoms — catastrophizing — actually generate more of the chemicals that worsen sensations of pain. Luedtke’s own observation is that patients on disability often do worse than those with a structured, productive life, even if it involves volunteer activities.
3. Patients with FMS need healthcare providers who will work with them, who will take them seriously, and will not be dismissive. Providers need to understand that as symptoms shift the patient may want to know if they are developing some new debilitating condition.
4. Self-management is vital; so, give patients permission to take care of themselves. Patients with FMS need to live balanced, active lives, but without overdoing things on good days and not permitting themselves to become deconditioned on bad days.
5. Giving patients with FMS an opportunity to take an active role in managing their illness is in itself therapeutic. Along with that, the provider-patient relationship occupies a special place in the therapeutic process, since these patients need emotional support. Many feel like victims, some actually have been victimized, and many are depressed; therefore, the psychological undertones of this very real illness frequently affect its severity.

COMMENTARY: In many ways, FMS is still somewhat of a conundrum. Some clinicians might continue to argue that fibromyalgia is more of a “catchall” diagnosis, when nothing else seems to fit, rather than a specific disease.

In the overview article, Steven Peskin, MD — Executive VP and Chief Medical Officer, MediMedia USA — argues that whether or not FMS exists as a disease entity is a moot point. Fibromyalgia has an ICD-9 CM code, is defined by authoritative medical references, and has FDA-approved medications with labeled indications for treatment of the disease. However, there actually are not that many medications specifically indicated and approved for the condition, as we previously discussed [here] and [here].

Diagnosis can be difficult and less experienced practitioners might conclude that, with the absence of specific biomarkers and only minimal physical exam findings (eg, tender points), FMS may be more of a behavioral or mental health condition. If a patient persists, and the practitioner is willing, a constellation of other possible etiologies also might be considered, tested, and cautiously ruled out so that a diagnosis of FMS will finally be established — all of which explains why the process could take 5 years in many cases, as Luedtke notes, incurring significant expense.

Just last year the American College of Rheumatology (ACR) proposed new, easier to apply diagnostic criteria for FMS that take into account common symptoms such as fatigue, sleep disturbances, and cognitive problems, as well as pain [which was discussed in an UPDATE here]. This could mean a lesser role for counting tender points and greater recognition that fibromyalgia is more than just body pain, which could be important for patients who suffer multiple symptoms in addition to pain and have had no diagnosis of fibromyalgia.

The realities of the many barriers and challenges surrounding FMS require that practitioners, healthcare organizations, health plans, and employers identify approaches to managing this disease that treat the whole patient — as well as the symptoms and underlying causes, whether they are neurological, immune-mediated, psychological, or otherwise yet to be determined.

REFERENCE: Kirsch B. Managing Fibromyalgia: Supporting Self-Management Brings Many Advantages. Managed Care. 2011:36-38 [full article here].