A New Way of Dealing with Mystery Symptoms
Not all medical symptoms can be easily explained. But they can be treated.
Posted January 4, 2017
Medical diagnosis isn't as easy as you might think.
According to surveys, an estimated 25 to 33 percent of patients seeing their family doctors report symptoms that defy medical explanation. These symptoms can strike any part of the body and are often so severe that patients may find themselves unable to work or do basic chores around the house. Cases such as this can be described in different ways, including medically unexplained symptoms (MUS), chronic functional abdominal pain (CFAP), chronic whiplash, chronic pain disorder, etc. For European physicians, there is a new diagnosis that is increasingly popular known as bodily distress syndrome (BDS) but they all share one basic similarity: the doctors really don't know what is happening with their patients.
While disorders such as fibromyalgia, chronic fatigue syndrome,and irritable bowel syndrome among others have become recognized as legitimate conditions in medical circles, they may also lack a clear cause and, for many years, were also considered untreatable by medical doctors. Though patients with these conditions may find help, other patients reporting mystery symptoms aren't so fortunate.
Still, when patients come to their doctors for answers and those answers aren't readily available, it can represent a major drain on health care systems around the world. In the United States alone, the cost of medical visits, medical tests, prescriptions, and lost work-hours for these mystery conditions has been estimated to be $256 billion per year.
Part of the problem is that medical doctors are trained to find a physical cause and may often overlook psychological factors that may be contributing to what is happening with their patients. Unfortunately, even when these patients are referred to a mental health professional, the patients themselves may actively resist any attempt at finding a psychological cause for their symptoms. Often resentful at being seen as "crazy," patients may drop out of treatment altogether.
One alternative which has been gaining popularity has led to the creation of a new diagnostic category known as psychophysiological disorders (PPD). Defined as physical disorders with a psychological overlay, the term is taken from George Engel's biopsychosocial model which describes how life changes can trigger psychophysiological problems over time. Since stress can affect the body in different ways, patients can develop a wide range of different symptoms which are often hard to treat by family doctors. For this reason, patients with PPD need to be carefully assessed before any attempt at treatment.
In a new article published in the journal Families, Systems, and Health, psychiatrist David Clarke of the Oregon Health and Sciences University's Center for Ethics, outlines one useful approach based on work with thousands of adult and adolescent PPD patients as well as recent research into psychophysiological disorders. Though primarily aimed at medical doctors, this approach described in his article also requires collaborating with mental health professionals to provide the flexible treatment many PPD patients need.
In any cases involving suspected PPD, medical professionals need to be careful in suggesting a psychological cause. Patients reporting mystery symptoms with no apparent physical cause are usually reluctant to admit that stress may be a factor.To deal with this skepticism, doctors need to remind their patients that physical responses to stress are quite common, especially in terms of how stress affects the brain. Doctors also need to assure patients that what is happening is not due to poor coping skills or because of suspected malingering.
In diagnosing PPD, doctors should follow what Dr. Clarke refers to as a stress evaluation which can be done over several appointments:
- Collecting an illness chronology to determine when the symptoms first began and over what time period. This includes asking about life stresses that may have occurred at the same time or just before the symptoms began. Life crises such as relationship breakdowns, employment problems, or financial crises can be especially relevant.
- Gathering information on current stresses being faced by the patient. This includes asking about any personal crises that the patient may be going through, whether it involves relationship issues, financial problems, or even "daily hassles' such as a long commutes or workplace stress. At this stage, doctors should also ask about the kind of coping strategies being used and whether patients are taking proper care of themselves.
- The presence of additional symptoms including depression and anxiety disorders. Even for patients who deny emotional problems, careful questions can still show they are experiencing symptoms suggesting emotional problems. This can include chronic fatigue, inability to feel pleasure (anhedonia), loss of appetite, suicidal thoughts, hopelessness, chronic worry, etc. For patients who may be experiencing anxiety problems, an important clue is if their mystery symptoms diminish whenever they feel safe or secure.
- The presence of post-traumatic stress. Patients need to be questioned about life events that might be contributing to their stress, especially traumatic life events.
- Gathering information on adverse childhood experiences (ACEs). This includes looking at the kind of stressful environment patients experienced as children including emotional, physical, or sexual abuse. Bullying, parental substance abuse or violence, and childhood neglect can often produce PPD problems later in life, especially if these issues were never really addressed at the time. Children typically suppress the emotions they experience due to this kind of adversity but it can still resurface many years later in the form of mystery symptoms that can't be explained.
For patients with ACEs, it is also important to identify where they are on the road to recovery from their early trauma. David Clarke referred to three stages of recovery:
Stage one- poor self-esteem, increased vigilance, anxiety and depression. People at this stage also engage in problem behaviors that are used to cope with stress such as eating problems, substance abuse, promiscuous sex, problem gambling, etc.
Stage two- the problem symptoms slowly diminish and childhood survivors develop a steady increase in self-esteem. They also form social support networks that provide them with the emotional support that they need.
Stage three- negative symptoms diminish even further and self-esteem continues to grow. Unfortunately, survivors often lack conscious awareness of the emotions they have been suppressing for so long which can make them vulnerable to developing mystery symptoms when faced with stress.
As part of the stress evaluation, it might be helpful to ask patients to write a list of all the stressful life events they can recall, past and present. In many cases, this can be a revelation if they are concentrated in specific problem areas such as work issues or relationship problems. It can also make them realize that stress is playing a greater role in their mystery symptoms than they had been previously willing to admit.
Even at this stage however, many PPD patients may still be reluctant to begin psychotherapy though it would be especially beneficial for anyone dealing with symptoms that can be linked to childhood abuse, depression, or posttraumatic stress. There are other alternatives that can be tried including providing patients with a list of self-help books, medication for depression or anxiety if needed, or suggesting alternatives to psychotherapy including pastoral counseling, yoga, or meditation.
In his own practice dealing with PPD patients, David Clarke reports great success with offering a specialized workshop which is often presented in a classroom format. The workshop includes all the information given above as well as more general information on the link between stress and disease. Along with his own patients, he also deals with numerous referrals from other doctors and also provide a set of slides free of charge which is available online to anyone wishing additional information. In the six years that he has been presenting this class, he is reporting a 22 percent decrease in medical visits as well as a 50 percent rise in referrals to his group from other doctors.
As Dr. Clarke points out in his conclusion, there is still a large blind spot in health care since most family doctors have little training in the psychosocial causes of disease. In a famous 1925 speech, Francis Peabody said that, "In all your patients whose symptoms are of functional origin, the whole problem of diagnosis and treatment depends on your insight into the patient’s character and personal life" though little progress has been made in the 90 years since.
For health care professionals dealing with mystery symptoms with no apparent medical cause, helping patients recognize the influence that stress can play on the body can be a key part of the treatment process.
Clarke, D. D. (2016). Diagnosis and treatment of medically unexplained symptoms and chronic functional syndromes. Families, Systems, & Health, 34(4), 309-316.