By David L. Katz, MD; Chief Medical Officer of the Community Pain Center
There are few things more vexing to patient and doctor alike than dealing with a syndrome—a condition that has a recognizable cluster of characteristic symptoms (what the patient feels) and/or signs (what the doctor finds on examination or testing)—but no known cause, no confirmatory test, and often, no certain approach to treatment. As an example, acute infection with Borrelia burgdorferi is Lyme disease; the symptoms that sometimes linger for years after a bout of Lyme disease is treated constitute a syndrome.
The challenge of living with a syndrome confronts millions of Americans. Roughly 1% to 2% of the US population, or some 4 million people, have fibromyalgia. Chronic fatigue syndrome affects approximately 800,000. As many as 50,000,000 of us have irritable bowel syndrome. Nearly 40,000,000 women have premenstrual syndrome. Interstitial cystitis plagues some 700,000 women, and nearly 28 million adults in the US have a migraine headache syndrome.
If you are a member of the enormous population that suffers from one or more syndromes, you can get good medical care. But you have to know how.
absence of any characteristic
laboratory test findings.
There are several important differences between syndromes and diseases that have implications for the care provided and received. Because a disease has a cause that is known to one degree or another, it is often verifiable through diagnostic testing, such as blood tests or x-rays. Syndromes often must be diagnosed on the basis of symptoms and signs alone, in the absence of any characteristic laboratory test findings. They are often called “diagnoses of exclusion,” meaning a syndrome is diagnosed when testing rules out everything else!
Syndromes tend to be more variable than diseases, probably because the same pattern of symptoms and signs may derive from multiple causes. It is likely that in many cases what is currently diagnosed as one syndrome will someday, when we know more, actually turn into several related diseases. This has happened before; a variety of different types of arthritis that can now be diagnosed quite precisely as rheumatoid arthritis, or osteoarthritis, or Lupus arthritis, were once a syndrome of joint pain all lumped together under the title of “rheumatism.”
But perhaps the most important difference of all between disease and syndrome is the legitimacy attached to them. The lack of confirmatory test results for a syndrome means that there is nothing to “clinch” the diagnosis. Because the causes of syndromes are unknown, treatment is often uncertain too, and results often less than gratifying.
Doctors don’t much care for conditions they don’t understand well, can’t treat effectively, and can’t even confirm with a blood test. The frustration that results often translates into one of medicine’s more common, and most regrettable missteps: blaming the victim. Patients with syndromes are often overtly, or at least covertly, blamed for their symptoms and engender an “it’s all in his/her head” attitude in their doctor.
This is where things tend to degenerate. Patients with syndromes typically don’t feel well. They want to feel better. When the desire to feel better is confronted by a physician who blames you for your symptoms, it is the very literal addition of insult to injury.
The result is a patient who is angry at their doctor, and the health care system in general. Such a patient often seeks out another, more compassionate provider. Whether or not they find one, the encounter is often encumbered by the patient’s anger and frustration over the prior experience. So the second doctor sees a patient not only with hard-to-treat and hard-to-diagnose symptoms, but also with “an attitude.”
This makes it even easier for the second doctor than the first to conclude: “it’s all in your head.” I have encountered many such patients, and I confess, try as I might to be compassionate, I find it difficult each time not to resent the grudge they have against me for the transgressions of other providers!
attitudes, patients are often guilty of “original sin” attitudes, blaming all providers for the missteps of some.
The result is bad care, and dissatisfaction for everyone involved.
Don’t let this happen to you. Follow these basic guidelines:
- Resist blaming a new provider for the transgressions of others. Just as you want to be treated as the unique human being that you are, so does your doctor. Give him or her a chance.
- Don’t exaggerate. Tell your story clearly, and with whatever passion you feel—but simply and clearly.
- Don’t doctor shop. Find and stick with a health care provider you trust. Going from doctor to doctor in the hopes of finding one who will, at last, “make the diagnosis,” tends to fragment care, consume a great deal of time and energy in repetitive testing, and create the impression that you are a malcontent. If you are not satisfied with your provider, by all means move on. But once you find someone you can trust, stick with them—even if they fail to make a brilliant diagnosis that suddenly makes your condition curable.
- Acknowledge that you don’t expect abnormal test results. Once you’ve been through testing several times, there is little to gain in revisiting it until and unless your condition changes.
- Emphasize your specific goals. If you are convinced you have a syndrome, don’t waste time trying to get another diagnosis. Rather, state very directly that what you want is compassionate care and a commitment to helping you feel better. Medical care often becomes preoccupied with making the diagnosis, with testing and technology. You could spend years on that treadmill going nowhere if you ask each new doctor to start from scratch. Instead, get the testing done once and well, and then accept you may have a condition for which laboratory testing is unhelpful. Find a provider who accepts this, too, and will do his or her utmost to help relieve your symptoms.
- Consider “alternative” care, but cautiously. One of the hallmark differences between conventional medical practitioners and alternative care providers is that the former are often focused on cure, and the treatment of causes; whereas the latter are accustomed to being focused on the treatment of symptoms. In the face of a vexing syndrome that symptom-oriented approach can be quite helpful. But there is a lot of charlatanism out there, too, and it thrives in the world of often unregulated “alternative” care. Get the good and avoid the bad by conferring with your primary doctor about getting alternative care. Make sure your providers talk to one another, and put their heads together about you. This will ensure you get the best treatments the full spectrum of medical care has to offer, while avoiding the health and financial hazards of snake oil.
tomorrow’s diseases, with causes, courses, and cures established.
There is a bit of good news about syndromes. They generally do not cause progressive damage to body tissues. Conditions that do so result in characteristic changes in pathology specimens, and thus are categorized as a disease. There is some small comfort while suffering the symptoms of a syndrome in knowing that progressive and debilitating damage to your body is unlikely.
Often over time what starts as a much-maligned syndrome earns the respect of the medical community as the evidence that it is ‘real’ accumulates. Today’s syndromes are likely to be tomorrow’s diseases, with causes, courses, and cures established. But you don’t have to wait for this to happen in your case. With the right strategies, you can succeed in getting the high quality care you deserve right now.