A Classification of Pain Patient Behavior

Taxonomy of Pain Patient Behavior – Practical Pain Management – By Ron Lechnyr, PhD, DSW and Henry H. Holmes, MD – Dec 2011 (repost from Feb 2015)

I’m posting this so you can see how doctors view our behavior and what we tell them about our pain. Knowing what we look like from “the other side” can help us avoid falling into one of these categories that cause doctors to dismiss us or view us negatively.

Though all types of physical illnesses and problems have psychological issues that need to be considered in the delivery of services, there are some patients whose response style may confound the diagnostic picture.

When this happens, such patients are often given the label “hystronic,” “neurotic,” or as having a “functional overlay” to their pain or medical problems.  

EDS Requires Aggressive High-Dose Pain Therapy

Ehlers-Danlos Syndrome: An Emerging Challenge for Pain Management – By Forest Tennant, MD, DrPH – Editor’s Memo – Sep 2017 – updated Feb 2020

This article was written by a doctor who specialized in chronic pain treatment until the DEA shut him down because he dared treat his patients with effective doses of opioids. He points out how our defective collagen leads to a great deal of pain in multiple bodily systems.

Until recently, Ehlers-Danlos Syndrome (EDS) was a name that elicited little relevance or urgency in the pain world.

Little did I realize that I had been treating more cases of EDS in patients who had been referred to my practice initially for more commonly recognized diagnoses such as fibromyalgia, spine degeneration, and resistant migraine.

Diagnosis Codes Index – Opioid related disorders

Diagnosis Codes Index – Opioid related disorders (F11)

In the new ICD-10 system for medical billing codes, there’s a specific code for anything and everything to do with opioids. There’s even a code for “opioid use, unspecified, uncomplicated“, which seems to indicate that any “use” of opioids is a medical problem in itself. 

We can see how “the medical system” is organized by looking at how healthcare services are billed. Looking at the hierarchy of categories in this billing scheme, we can discover how they see us, pain patients, using opioids.

The problems start at the top level: our “code” is listed under the category of “Mental disorders”:

Mental and behavioural disorders (F00–F99)   

Management of chronic pain in EDS – part 1

Management of chronic pain in Ehlers–Danlos syndrome: Two case reports and a review of the literature – journals.lww.com –  November 2018 – Part 1

I have a lot to say about this long article, so I’m going to break it into 3 separate posts:

Ehlers–Danlos syndromes (EDSs) are a heterogeneous group of heritable connective tissue disorders involving defective collagen synthesis.

Patients with EDS are prone for chronic myofascial pain, apart from other comorbidities.

Although the initial pathology is commonly nociceptive, progression of EDS leads to neuropathies and central sensitization of pain signals.  

Common Tragedies of Joint Instability

Common Tragedies Of Lax Joint Syndromes: Broken Hearts, Fallen Men, And Loose Women | Consultant360 | 02/23/15 (reposted from 2015)

This is an excellent and thorough overview of the numerous additional problems in addition to joint laxity found in EDS and other Connective Tissue Disorders (CTDs):

Joint laxity syndromes can cause many nonspecific and variable symptoms, even among patients with the same condition, making diagnosis difficult.

Many patients see numerous specialists before receiving a proper diagnosis, as many healthcare providers are only familiar with the more extreme forms of the disease (eg, Marfan syndrome, osteogenesis imperfecta) despite milder variants being more prevalent.  

Medical uncertainty leads to “conversion disorder”

Facing medical uncertainty, doctors tell patients it’s all in their heads – By Elizabeth Cohen, CNN – December 21, 2018

When 7-year-old Bailey Sheehan arrived at a hospital in Oregon partially paralyzed, a doctor said the girl was faking her symptoms to get her parents’ attention because she was jealous of her new baby sister.

Those of us with invisible painful syndromes regularly encounter this attitude from medical professionals. When a doctor cannot find some tangible “proof” of our pain, they jump to the conclusion that our problems are mental.

But that doctor was proved wrong when an MRI showed that the girl had acute flaccid myelitis or AFM, a polio-like disease that’s struck hundreds of children since 2014.

What I find frightening and even immoral is that doctors are never reprimanded, rebuked, or in any way penalized for this atrocious conduct, not by their peers, their employers, or medical boards.  

Fibromyalgia patients have brain inflammation

PET scans show fibromyalgia patients have inflammation in the brain – Oct. 5, 2018 – By Serena Gordon, HealthDay News

“Finding an objective neurochemical change in the brains of people who are used to being told that their problems are imaginary is pretty important,” explained senior study author Marco Loggia.

I think this is wonderful news. The public usuallly believes that fibromyalgia isn’t a “real” condition, so our suffering from the chronic pain it causes is dismissed as “psychological”. We still can’t detect or measure the pain, but now there’s a way to objectively detect one syndrome/disease that’s causing it.

The new research used an advanced imaging test called positron emission tomography, or PET, and looked at 31 people with fibromyalgia and 27 healthy “controls” from Boston and Stockholm, Sweden. 

Could your Fibromyalgia Actually be Ehlers-Danlos?

Could your Fibromyalgia Actually be Ehlers-Danlos Syndrome? – National Pain Report – By Ellen Lenox Smith – Oct 2018

I was diagnosed with Ehlers-Danlos Syndrome (EDS), a condition you are born with, fourteen years ago at the age of fifty-four. The physical symptoms created by EDS mimic the symptoms associated with fibromyalgia.

As a result, many of the individuals suffering from EDS have, like me, initially been diagnosed with the much more commonly diagnosed condition of Fibro. I can attest to this dynamic for over the past decade, I have had contact with many EDS patients sharing similar stories.

This happened to me too. I resisted a fibromyalgia diagnosis for years until I needed a diagnosis to justify my pain medication to my insurance company. Even at that time, I felt/knew it wasn’t right. 

Our Neglect of Chronic Pain

Our Neglect of Chronic Pain Has Left Many Without an Identity – Oct 2018 By Scott McKinney Ph.D.

The opioid epidemic is in the news on just about every television and radio show.

Our regulators debate, campaign, and vote on issues around controlling borders and over-regulating Physicians, yet no one is talking about the typical mom, dad, husband, or wife that deals with chronic pain issues.

As the regulatory broom sweeps our nation, normal and functioning, people are being brushed away by a straying bristle. The, now common story, of a person dealing with chronic pain goes something like this:  

Chronic Pain may be More than Central Sensitization

Identifying Central Sensitization May Not Tell the Whole Story by Charles E Argoff, MD – Sept 2018

Though this article addresses only chronic pelvic pain (CPP), I believe it can be generalized across many other painful disorders of unknown cause.

Levesque et al. describe in this edition of the Journal their development of a consensus-based tool using the Delphi process to assist in establishing clinical criteria of central sensitization in chronic pelvic pain and perineal pain (CPP).

However, the very premise that the authors make—“The concept of central sensitization may allow better understanding and management of patients with chronic pelvic pain (CPP), which is why we decided to elaborate a clinical evaluation tool designed to simply identify central sensitization in pelvic pain”—as the only important neural mechanism in CPP is itself unproven.