Tough love works best in dealing with CFS, fibromyalgia patients
Tough love works best in dealing with CFS, fibromyalgia patients
CM's aim is to get them back to work quickly
With no clear clinical tests to confirm diagnosis and no clear parameters to determine length of disability, chronic fatigue syndrome (CFS) and fibromyalgia are enigmatic conditions that often cause case managers great frustration. "These are two of our toughest diagnoses," says Lou Anne Rossdeutscher, RN, BS, CCM, director of early intervention disability management for Ellis and Associates in Chicago. "They are very vague and often come hand-in-hand with other chronic conditions such as asthma, depression, or lupus. We often find there has been an illness like a viral pneumonia that turns into CFS or fibromyalgia."
Although they are different diagnoses, CFS and fibromyalgia present similar case management woes because of their overlapping symptoms. Both diagnoses rely heavily on self-reported symptoms with little objective clinical evidence, says Scott M. Yarosh, MD, an internist and psychiatrist in St. Paul, MN. Naturally, this makes diagnosing either condition difficult, and patients often see several medical specialists before a diagnosis is made. A careful patient history and physical exam are necessary, and tests should be conducted to rule out anemia, infection, diabetes, heart disease, cancer, low thyroid function, and other conditions that may produce persistent weakness, fatigue, and aches. (For a list of symptoms common to CFS and fibromyalgia, see boxes on pp. 78-79.) In addition, the Centers for Disease Control and Prevention in Atlanta issued diagnostic guidelines for CFS in 1994 that require physicians to rule out the possibility of a psychiatric disorder before diagnosing CFS. "This means basically that if a patient has a history of clinical depression or another psychiatric disorder, by definition they cannot have CFS," Yarosh says.
A test to identify a subset of the most seriously disabled CFS patients has been developed in Belgium, but it is not yet readily available in the United States. Called the REDD test, it will be used in a treatment program launched by Hemispherx and Olsten Health Services in Melville, NY.
"The test identifies an immunological marker in the peripheral blood that has proven 90% accurate in clinical trials," says William A. Carter, chief executive officer and chairman of Hemispherx. "It pinpoints an immune lesion found in a majority of CFS patients. It also has a very low false positive rate." [For details on the test, visit the Hemispherx World Wide Web site at www.hemispherx.com or call (215) 988-0080. For more on the treatment program, see p. 80.]
Profiles in denialCFS and fibromyalgia patients have similar psychological profiles, Yarosh says. "These are often educated, ambitious individuals with a strong work ethic. Many patients have played the role of caretaker in their families. More CFS and fibromyalgia patients are women, and some have a history of sexual or physical abuse. I see these both as psychological exhaustion syndromes. Patients know they are expected to work and should work but they feel incapable of working."
"Many patients with these types of disorders are perfectionists," agrees Mark Raderstorf, CCM, CRC, a licensed psychologist and president of Behavioral Management in Minneapolis. "They place very high standards for themselves, and when fatigue and pain prevent them from performing their jobs as well as they believe they should, it causes high levels of guilt. Their guilt and their inability to accept that there may be a psychological component to their disability causes a downward spiral which exacerbates their medical condition."
To distinguish true disability caused by CFS or fibromyalgia and malingering, Yarosh says he assesses the degree of discomfort individuals express about their inability to work. "If they seem very casual about their inability to work, it's likely to be malingering: an individual who had a bad case of the flu and is dragging it out. However, if individuals seem very disturbed about their inability to work, they are more likely to be disabled."
The strong mind/body connection association with CFS and fibromyalgia makes cognitive behavioral therapy an essential part of the treatment plan for both of these medical conditions, Raderstorf says. "Therapy should be aimed at helping change the way patients view themselves and the challenges before them. It's useful if the therapist helps patients accept a more realistic picture of their abilities, while at the same time encouraging them to continue to move forward and work, even if it is part time or in a volunteer capacity," he explains.
While therapy can be useful for treating the depression that often accompanies these diagnoses and preventing a disability mindset from developing, Yarosh doesn't recommend CFS or fibromyalgia support groups to his patients. "I feel that these support groups often feed the disability mindset. They can become eternal validation mechanisms that actually hamper recovery."
Recovery can be prolongedOther common treatments for CFS and fibromyalgia include the following:
· mild antidepressants to elevate mood and promote stage four sleep;
· physical therapy and exercise routines;
· nonsteroidal, anti-inflammatory drugs;
· acupuncture;
· acupressure;
· massage therapy;
· stress reduction and relaxation techniques.
Many CFS and fibromyalgia patients turn to complementary therapies, Rossdeutscher says. "A lot of CFS cases I work with are trying homeopathy, acupuncture, and vitamin and food combinations. Unfortunately, most of these therapies are not covered by health insurance."
"Tough love" is the best approach for case managers and providers to take with CFS and fibromyalgia patients, Yarosh says. "The first step is to validate the symptoms without enabling the sense of disability. You must never express cynicism or ridicule. Take the approach that you will work together with the patient to help them get better and return to work."
Raderstorf also favors a tough approach but cautions that recovery from CFS and fibro my algia can be prolonged, an average of two to three years, and requires patience from both case manager and client. "There is no quick turnaround with these diagnoses. Case managers have a tendency to jump on these cases and either deny the claim or let them sit, doing little to assist the client to return to work."
Instead, Raderstorf suggests developing a strong rapport with these clients. "Frequent contact is useful in establishing a sense of real caring. Case managers must understand from the start that they are in for the long haul. My advice when I train payer case managers is to spend the first two or three phone calls with the client just chatting and providing empathy. If you begin to push too strongly from the first phone call for return-to-work, clients get the sense you don't believe this is a legitimate diagnosis and will never trust you. You're going to run into a brick wall."
"I agree that frequent contact is important," Rossdeutscher says. "We call accident and health clients with CFS or fibromyalgia at least every two weeks and disability clients at least once a month. We encourage them to get out of bed and continue with a mild exercise program. Exercise is the one treatment that seems to be effective. It is also the one thing that is often hardest to do."
Of course, because most CFS and fibromyalgia patients have more than one provider, it's important to use a team approach, Raderstorf says. "All of the providers and the case manager need to give the patient the same message. That message should be: 'What you are experiencing is real, but we believe you will recover. We're working together to help you become slowly more active.'" The team approach, coupled with a consistent tough love message, often leads to the "path of least resistance," he adds.
In addition, early intervention prevents a "disability mindset" from setting in, Raderstorf cautions. "The earlier you begin actively case managing these clients, the more likely you are to be effective. The minute you see a claim with complaints consistent with CFS or fibromyalgia, get on the phone to the client and start establishing a relationship."
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