So what’s the good news?

This thread needed to be moved up for obvious reasons. Have at it. –PalMD

I’ve been writing quite a bit about “questionable” illnesses, shameless quacks and the like, but there are reasons that people seek out odd diagnoses and cult doctors. They feel crappy, and they haven’t yet found someone who can make them feel less crappy.

Of course, some people will never feel OK. That’s just human nature. But almost everyone can be helped to feel better in one way or another. What are some of the ways physicians approach difficult-to-treat patients?

First of all, there are many syndromes that involve unexplainable pain. These include fibromyalgia, irritable bowel syndrome, interstitial cystitis, and others. These diseases are painful, but have no clear pathologic correlate, meaning all the tests in the world don’t clearly explain why the person is in pain. This doesn’t mean the patient is “faking it”—they really do feel miserable. We just don’t understand the cause. The other thing about these syndromes is that they are not life or limb threatening. Unlike, say, heart disease, they can hurt without causing physical damage to the body.

Some patients have clear “somatization” or “psychosomatic” disorders…

This label is usually saved for a particular subgroup of patients whose symptoms do not fall into any neat categories, and are fairly clearly not physically based (although they are sensed as physical problems). These disorders are a bit different, in that the patient is completely preoccupied with their symptoms, and often go from doctor to doctor seeking answers that don’t exist.

Both of these sets of patients are at risk for some very serious problems. First of all, since they report feeling lousy all the time, but tests are always fine, they are at risk of “cry wolf” syndrome. Plenty of patients have chronic, benign abdominal pain, but one of these days, they may actually have a perforated ulcer, an appendicitis, or some other abdominal catastrophe. It becomes very difficult to decide when to pursue further diagnostic testing in these folks.

Second, they are at risk of being treated as kooks. Doctors like feeling helpful, and since the pain is unlikely to go away completely, and the cause is unlikely to be found, the doctor feels as helpless as the patient, and may become dismissive. This is not the norm. Most primary care doctors deal with these problems every day, and have a great deal of compassion for their patients.

Third, they may undergo many unnecessary tests and procedures, or be sucked in to cult medicine.

So what can be done for these folks? Let’s remember, these are often reasonably normal people, who suffer from discomfort, but not from any life-threatening illnesses.

There is some literature out there, but since this is a very diverse group of people, no one rule applies. OK, one rule does apply—they really hurt, and that must be acknowledged (malingerers are usually fairly easy to spot, as they don’t have the same chronicity of symptoms). The pain is real, and must be treated as such.

Feeling constant pain can lead to depression (and depression can lead to physical pain), so it should come as no surprise that these patients often respond to psychotherapy and to anti-depressant medications.

Opiate medications should be avoided.

Regular, frequent appointments with a primary care doctor can do a lot of things. It can serve to reassure the patient. It can help the doctor know the patient well, so that “cry wolfism” is less likely. And it can prevent frequent ER visits, specialist visits, and unnecessary tests.

Morgellons patients probably come from many different categories. Some have psychosomatic problems, some somatization, some actual physical pathology, and some have more severe psychopathology. Sorting it out is the job of the primary care physician, and anyone with chronic pain needs to find a compassionate doctor who is willing to build a trusting relationship and take them seriously. This does not mean the doctor should pursue every idea the patient has, but that they should maintain a level of trust that will allow them to help the patient make good decisions, and help reduce anxiety and discomfort. And before the negative comments start rolling in, most internists and family physicians are good at this. Making people feel better is why the chose their profession.