When symptoms are a mystery

Many psychologists see clients who are worried about physical symptoms with no clear organic cause, whether they are headaches, abdominal pain or more vague complaints such as fatigue or simply feeling unwell. Depending on the severity and chronicity of the complaints, they present a conundrum: To what extent should you be concerned that a serious medical condition underlies the complaints, and how much should you assume the problem is psychological and tailor treatment accordingly?

As it turns out, so-called medically unexplained symptoms are extremely common: Studies show that at least a third of somatic symptoms presented in primary care fall into this category, according to a 2003 review of the literature by Kurt Kroenke, MD, a research scientist and professor of medicine at Indiana University. Between one-fifth and one-quarter of those symptoms are chronic or recurrent, adds Kroenke, whose results are published in the International Journal of Methods in Psychiatric Research.

Physicians often see symptoms without a definitive organic diagnosis as psychosomatic — a modern if less dramatic version of the 19th-century tendency to label neurological symptoms "hysteria," says Michael Sharpe, MD, a University of Oxford psychiatrist who studies the psychological aspects of medical illness. 

"There has been an unfortunate split in our thinking between what's physical and what we think of as ‘real,' and what is mental, and what we think of as imaginary or blameworthy," says Sharpe. "What we really don't have, and what we need, is better integration and understanding of conditions that may have both physical and psychological components."

In fact, because of this split, the area is highly controversial, with physicians and researchers sometimes butting heads with patient advocates who are unwilling to accept that their conditions may be partly or completely psychologically based.

Fortunately, a number of psychological researchers and clinicians are starting to think in more sophisticated, patient-friendly ways about this issue.

For one thing, they're more likely than in the past to view illnesses along a mind-body continuum, rather than as an either-or phenomenon. This thinking is reflected in the latest version of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, the DSM-5, which came out in May.

"We tried to get away from saying whether the symptoms are explained or not, and just allow people to have symptoms," says Sharpe, who was on the DSM-5 work group for somatic symptoms. (The new DSM does include a category called "somatic symptom disorder" for people with severe, chronic and troublesome physical symptoms that may or may not have a medical explanation.)

For another thing, psychologists do have labels for "gray" conditions that meet the criteria of conditions without a known organic cause — chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome and multiple chemical sensitivities, for example, says Dan Galper, PhD, director of research and special projects in APA's Practice Directorate. They are called "functional" illnesses, meaning that while there isn't necessarily a cause that shows up on an X-ray or blood test, it's clear these conditions cause problems in functioning and pain and can be treated from that perspective.

"You don't have to see evidence of pain to see that someone is in pain, or fatigued, for that matter," Galper explains.

Thanks to these insights and our growing knowledge of the complex ways the brain affects the body, practitioners and researchers are developing more nuanced ways of treating such patients. Some are tailoring cognitive behavioral strategies specifically to address physical symptoms, while others are creating and testing models that see poorly understood or unexplained conditions as multifactorial, the result of complex biopsychosocial factors (see In search of causes).

No matter what the ultimate cause of a client's physical symptoms, however, psychologists' main focus should be on helping patients cope with their symptoms and develop a better quality of life, just as they would with a firm organic diagnosis, says Ellen Dornelas, PhD, a health psychologist who sees patients with cancer and other medical conditions at Hartford Hospital in Hartford, Conn.

"The body and mind work together in mysterious ways, and there are a lot of permutations in why people develop physical symptoms," Dornelas says. "I strive for a dialectic that acknowledges both the person's physical and emotional symptoms, and then work on helping people make positive changes."

Living with the unknown

While there are plenty of unanswered questions about the nature and cause of mysterious physical symptoms, there is no question that these patients suffer as much as or more than those whose illnesses have a concrete organic label, experts agree.

For one thing, they're living with uncertainty. "Not having a [firm or organic] diagnosis to pin something on means that the course of the illness itself is unknown and the treatment is unknown," Dornelas says. "It's a big challenge when that happens, and it understandably makes people feel distraught."

They must also contend with society's view that because they lack a diagnosis or known organic cause, they're not really sick, says Kevin O'Brien, a nurse practitioner at the National Institutes of Health's Undiagnosed Diseases Program, which sees extremely ill patients who, despite extensive testing, have not received an adequate diagnosis (see Rare disease detectives).

"A good number of our patients have multiple chronic problems and are clearly sick, but to the outside world they look fine," he says. "They're hearing, ‘It's all in your head,' but they know there's something wrong, even though they don't know what it is. So they face both the uncertainty of their condition and the social stigma that comes along with it."

On the psychological end, chronic illnesses of any stripe, including those that are unexplained, can lead to declines in functioning, changes in body image, and consequent avoidance of activities and people, O'Brien adds.

"When you're constantly sick, you're not going to feel like going out with your friends on a Friday night," he says. "And after some time you tend to lose friends." These factors lead to reactive depression and anxiety, which in turn creates a negative feedback loop that can exacerbate symptoms, he says.

In addition, these patients can inadvertently get overly entangled in the medical system, in part because physicians don't know how to refer them to the right mental health professionals, Sharpe says.

"Once you start going down the medical route, it can be hard to get out," he says. Patients may receive scads of unnecessary and even dangerous medical tests and surgeries, for example, and at the same time fail to receive helpful psychological interventions. The situation is costly for them and for the system, he says.

What does help?

A number of tactics can help such clients, says Galper, who notes that psychologists who specialize in health psychology or behavioral medicine are more likely than others to be trained in addressing such conditions.

To start, it's vital that clients receive a thorough medical workup if they haven't done so already, says psychiatrist Joel Dimsdale, MD, professor emeritus at the University of California, San Diego, who was a member of the DSM-5 somatic symptoms work group.

Research also shows that a variant of cognitive behavioral therapy — one tailored to addressing a patient's medical symptoms — can be extremely helpful with many of these conditions, Sharpe adds.

A main strategy is acknowledging the reality of the physical symptoms but explaining to clients that stress reactions make symptoms worse. The next step is helping clients discover for themselves that if they can change those reactions, it can improve their health. In a randomized controlled study reported in Pain Research and Treatment in 2012, for instance, Rutgers University psychology professor Robert Woolfolk, PhD, and colleagues showed that fibromyalgia patients who received a form of cognitive behavioral therapy along with usual care reported less pain and overall better functioning post-treatment and at a nine-month follow-up than those who received only usual care. Likewise, a 2010 study in Psychological Medicine by health psychologist Rona Moss-Morris, PhD, of the University of Southampton and colleagues found that more than three-quarters of patients with irritable bowel syndrome who received a self-help form of CBT plus usual care reported symptom relief immediately after treatment and at three- and six-month follow-up, compared to about 21 percent of controls who received usual care.

Another crucial tack is to validate the patient's experience, says psychologist Leonard Jason, PhD, of DePaul University, who studies chronic fatigue syndrome.

"The most important thing you can do is to develop that bond," he says. "If someone believes a person will listen to them and respect them, that immediately makes them feel like they can take some important steps toward feeling good about potential treatment."

He also advises working on concrete health goals where patients can see progress. "All patients with chronic fatigue syndrome have sleep problems, for example," he says. "So, I suggest that they learn some sleep hygiene, or work with a medical doctor and try some sleep medications."

It's also important for mental health professionals to stay within their scope of expertise — to focus on the emotional and cognitive aspects of a client's condition rather than its medical aspects, Dimsdale adds. This can include helping clients tame excessive thoughts, feelings and behaviors related to their symptoms, and encouraging them to keep track of what aggravates or ameliorates their symptoms and make changes accordingly. "There is considerable room for what in essence amounts to rehabilitation," he says.

Others are studying the impact of mindfulness meditation on patients with medically unexplained conditions. A 2011 prospective, randomized controlled study reported in the American Journal of Gastroenterology by Susan A. Gaylord, PhD, of the University of North Carolina at Chapel Hill and colleagues, for instance, found that female patients with irritable bowel syndrome randomly assigned to eight weeks of mindfulness training had greater reductions in physical symptoms immediately after the training and at a three-month follow-up than those assigned to a support group. They also reported higher quality of life and lower distress and anxiety at three months than support-group members.

Finally, some studies show that antidepressants can help ameliorate a gamut of unexplained symptoms, whether or not the person is depressed, says Sharpe. That could be because depression increases the propensity to ruminate and to view stimuli as aversive, because the neural pathways for negative psychological and physical symptoms such as pain and depression are closely related, or both, he notes.

In a very basic way, simply letting people who live with a medical mystery know you're in their corner can be therapeutic, says Dornelas.

"For most people, facing it alone is one of their biggest fears," she says. "So I always try to give the message, what can a psychologist do? I can help you face it, so you don't have to go through this alone. I can help you stay very focused on your quality of life in the here and now, rather than pinning your hopes on a diagnosis that may or may not ever come."

Tori DeAngelis is a writer in Syracuse, N.Y.