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There is Comfort in a Name

It is human nature to name things. Even babies do it. They point at or grab a new object and say “Da” or some other one syllable word as they discover and claim the world around them.

People who don’t feel well search for answers. It is bewildering for them to hear “We don’t know what’s wrong with you”.

Nobody wants to be dizzy. It feels more substantial to have vertigo, even though in reality both terms are equally specific.

Every era has its diagnostic terminology, influenced by larger trends in science and sociology. People who are searching to name their symptoms tend to latch on to the diseases that get publicity and there are usually practitioners who feed into that. Many times diagnostic criteria are undeveloped or controversial. We call these entities syndromes, just like clinicians have done over the centuries before us. We describe constellations of symptoms and speculate about their cause. Only much later do we understand their pathophysiology and become able to sharpen their definitions. This tends to exclude some people who self diagnosed their way into something nameable.

Right now, there is the emerging concept of “Long Covid”. Before that it was chronic Lyme. It was neurasthenia in the early 1900’s. In between, we saw the emergence of fibromyalgia, chronic fatigue syndrome and many others.

Different cultures have different diagnostic frameworks. In Sweden there are 300,000 people with nonspecific symptoms who are diagnosed with sensitivity to electromagnetic fields. They move into super insulated homes off the power grid. I never hear of that here.

Wikipedia and many other sources, including Science Direct, list such “Culture-Bound Syndromes”. For example, Premenstrual Syndrome, Anorexia Nervosa and Morgellons aren’t universally recognized conditions, but fairly specific to Western cultures.

I am torn about using labels that may not fit exactly. They can help as concepts, but can also predispose patients to magnifying their illness experience and thus be self-fulfilling prophecies. I tend toward the concept of shadow syndromes and disease spectrums.

For example, I’m not hung up on how many fibromyalgia tender points a patient has. As long as they don’t meet the criteria for inflammatory rheumatic diseases, I often introduce the concept early on by saying “you have many features of what we call fibromyalgia, so these are some things that may help you feel better, even if you don’t have the full-blown condition…” (See more on my thoughts on the spectrum of disease here.)

This Time, it’s Different: The Man Who Cried Wolf and the Doctor Who Listened

Andrew White had a long history of non-cardiac chest pain, usually fitting the definition of costochondritis, or Tietze’s syndrome. His pain was sharp, localized high up to the left, not far from his collar bone. He was always tender to the touch there and his EKG and bloodwork were always normal.

Between his recurring chest pain and other symptoms, like belly pain and swelling with pain in his legs, Andrew had logged half a dozen emergency room visits in the first 9 months of this year. Each time, he had called the ambulance to get there.

Then one day, during a regular office visit, he told me about a new pain he’d been having. Because he doesn’t drive, he usually walks to the store. For the past two weeks, he had noticed some shortness of breath on the way back up the hill to his apartment. Also, he had felt a pressure more in the middle of his chest.

Was this the power of suggestion after being asked about such symptoms every time he had been to the emergency room? Or was it the real thing this time?

His exam and EKG were normal.

I did not take any chances. I put him on a long acting nitroglycerin plus PRN sublingual tablets with careful instructions on how to use them. I also prescribed atorvastatin and ordered an ASAP nuclear, chemical, stress test and told him under which circumstances to call 911, even though I had discouraged him from doing so for other symptoms before. I didn’t start a betablocker because his blood pressure was on the low side, but I scheduled an early followup.

His stress test was only mildly abnormal, but his cardiac cath showed a near total occlusion of his left anterior descending coronary artery. This is the big one that has been called the “widow maker”.

The lesson here is obvious. Even worriers and hypochondriacs get bad diseases sometimes. We must never dismiss or underestimate that possibility.

Osler said “Listen to your patient, he is telling you the diagnosis”. Duvefelt says “Listen to your patient, he is telling you what kind of doctor he needs you to be”.



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