Have Pain? Are You Crazy?

Have Pain? Are You Crazy? Rare Diseases Pt. 2 | Molecules to Medicine, Scientific American Blog Network

Will a prompt diagnosis of conversion disorder be part of “Quality Care Standards”?  Because it would save insurers the huge expenses of treating chronic pain and illness, this becomes frighteningly susceptible to abuse.

“It’s all in your head,” patients with unexplained pain or unexpected symptoms often hear.

Some of the diseases you may have heard of are connective tissue diseases

The lack of recognition of many diseases has huge consequences⁠. For example, in one survey,

  • it took patients in the US an average of 7.6 years to be properly diagnosed,
  • after visits to 8 physicians.
  • During that process, they received 2-3 misdiagnoses.
  • Two thirds had to get financial help from charities or public assistance
  • 75% complained of depression,
  • and 86% of anxiety and stress.

Each of the teens I wrote about last month has conditions that can cause severe pain. This is commonly misdiagnosed as a “somatoform” or “conversion” disease—symptoms unexplained by medical diagnoses—causing further damage to the patient.

Instead, Chick finally kissed the right frog, and found her prince—a caring, observant physician, who made the correct diagnoses, finding that she has Ehlers-Danlos syndrome (EDS), historically viewed as a connective tissue disease causing extremely hypermobile joints, but now known to be far more complex.

Dr. David Sherry, a professor of pediatrics at University of Pennsylvania. Dr. Sherry has recategorized Complex regional pain syndrome (CRPS) as an “amplified musculoskeletal pain syndrome (AMPS).”

Explained in next post: “Causes of Amplified Muscoskeletal pain

” He adds that conversion symptoms are “not uncommon.”

“The treatment starts at the first visit with confirming the diagnosis, discontinuing further medical evaluations⁠, stopping medications for pain (these 2 steps are sometimes much harder on the doctor than the child)  ??

I find it outrageous that this doctor feels that stopping pain medications is “harder on the doctor than the child”.  Is this because the doctor has to watch the patient suffering with untreated pain?

When asked about not providing pain meds, Sherry responded, “There is no good data that medications work. The most recent Cochrane analysis do not support the use of medications…

This is just crazy.  Hundreds of thousands of patients use medications successfully to manage their pain.

I also learned more about conversion disorders⁠. These are said to occur when there is some sort of unconscious psychological conflict which can’t be adequately expressed, and becomes “converted” to a physical symptom. By definition, it is unconscious, rather than deliberately factitious or malingering

Sherry lists conversion symptoms his clinic commonly sees⁠, including in them involuntary muscle spasms and “Fainting and lightheadedness, often called postural orthostatic tachycardia syndrome (POTS) or dysautonomia.”

“The vast majority of these symptoms need to be ignored since calling attention to them tends to make them worse.” Of note, POTS and dysautonomia are well recognized medical conditions that can be objectively tested (e.g., Tilt Table Test, orthostatic vital signs). These conditions are often treated by cardiologists and neurologists.

Sherry has said, “Once the clinical diagnosis of CRPS is made, it is counterproductive to do further studies, as they delay treatment and put doubts about the diagnosis in the mind of the patient and family.”

The new definition of somatic symptom disorder⁠ is similarly troubling:

  1. One or more somatic symptoms that is distressing or results in disruption of everyday life
  2. High level of anxiety about health or symptoms
  3. Excessive time or energy devoted to these symptoms or health concerns
  4. Symptoms persisting for 6 months.

Even the physician who chaired the DSM-IV and DSM-IV-TR committees on Pain Disorders, Stephen King⁠, is troubled that the criteria risk mislabeling many people as mentally ill when, in fact, more likely they are suffering from mismanagement of their pain.

Not all physicians believe in the psychiatric explanation for CRPS or pediatric pain commonly being due to conversion disorder.

While this used to be viewed primarily as a problem of loose joints, EDS now has many overlaps with CRPS, as well as associated with neuropathies, POTS, and migraine.

Dr. Richard Barnum, a child and adolescent forensic psychiatrist formerly with U. Mass and Harvard Medical Schools, believes that conversion disorder, if it does exist, is very uncommon.

He noted there that patients experience a “diagnosis” of conversion disorder as an accusation of dishonesty, and that it leaves the real problem untreated. Further, such labeling doesn’t ever lead to effective treatment and is very destructive, driving kids away from seeking further medical or psychiatric care.

As a physician, I understand the frustration of dealing with patients with chronic, unexplained symptoms. They are often angry and unpleasant, not without some justification. I know we don’t have answers for many symptoms.

A smart physician can always say, I don’t know what you have, but I’m going to find out, or I know what you have but there’s no cure, so I’m going to treat your symptoms.

You see things or look for things with which you are the most familiar or feel are most probable. We have a limited fund of knowledge, and often too little time or opportunity to discuss difficult-to-diagnose symptoms with our colleagues. Often, we have no one to consult with.

While it can be difficult to diagnose the cause of chronic pain, like EDS or Fibromyalgia or Chronic Fatigue Syndrome, that is no excuse to dismiss it as a mental problem.  The new Somatic Symptom Disorder (SSD) seems designed for doctors who simply cannot find a physical diagnosis.

Many patients suffer untreated for years before finally getting the correct diagnosis to explain their pain – pain that other doctors can just dismiss as SSD.  How can we tell the difference between SSD and a rare, difficult to diagnose disorder that will only be discovered as new research provides more clues?  (see case of Invisible Illness leads to Psych Ward.

1 thought on “Have Pain? Are You Crazy?

  1. Kim

    Please read more about Dr. Sherry and his highly successful treatment rate of AMPS at CHOP and the widespread use of his treatment protocol in hospitals across the country. You have misunderstood and understated his comments on conversion disorder as a component of a far greater understanding and treatment of pain. Patients who work with Dr. Sherry and his team are never told that their pain is purely psychological; that is NOT his belief nor his approach. You need to conduct far more comprehensive research into his diagnostic and treatment processes.

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