Analysis – Pain: What are We Talking About?

Analysis - Pain: What are We Talking About?

By Terri Lewis PhD

I am really bothered by the public conversation around the loosely bandied terms ‘pain’  and ‘addiction.’ Clearly, I am not alone in my distress. Why is it so difficult to talk about pain and addiction and to distinguish the experiences across persons who struggle with symptoms of disease?  Why is it that we who share this experience across disease states are so enraged by the overgeneralization of the pain experience fostered by CDC’s guidelines and the knee-jerk reaction of state legislatures who are promulgating regulations that confuse intractable pain with treatment for addiction?  Where has this conversation gone off the rails?

So I did a deep dive into the ICD-10, WHO’s classification system of disease – the framework upon which physician coding and classification systems (EMRs) are constructed.   Now mind you, there is a lot of complaining going on in the world of medicine about the lack of EMR functionality, the time it takes to train on the new ICD-10 classification system, and the pressure of physicians to service patients during briefer and briefer encounters. The ICD-10 (version 2016) is now required of all physicians and is a transition from its predecessor, ICD-9.  I looked at this tool as a clinician would, based upon his or her observations and a typical respondent’s report of pain.  What I find leads me to the conclusion that without training, many physicians won’t take the time to properly characterize your experience as a patient unless you - the patient - are an excellent reporter.  And quite frankly, upon presentation to the doctor’s office or emergency room, many are in too much agony to operate as excellent reporters and nor should they be expected to provide excellent information when presenting in a crisis.  I delved into the following link -

For those unfamiliar with this system. the framework consists of 22 sections as follows:

I           Certain infectious and parasitic diseases

II         Neoplasms

III        Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism

IV        Endocrine, nutritional and metabolic diseases

V         Mental and behavioral disorders

VI        Diseases of the nervous system

VII      Diseases of the eye and adnexa

VIII     Diseases of the ear and mastoid process

IX        Diseases of the circulatory system

X         Diseases of the respiratory system

XI        Diseases of the digestive system

XII      Diseases of the skin and subcutaneous tissue

XIII     Diseases of the musculoskeletal system and connective tissue

XIV     Diseases of the genitourinary system

XV      Pregnancy, childbirth and peurperium

XIV     Certain conditions arising in the perinatal period

XVII   Congenital malformations, deformations and chromosomal abnormalities

XVIII  Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified

XIX     Injury, poisoning and other consequences of external causes

XX      External causes of morbidity and mortality

XXI     Factors influencing health status and contact with health services

XXII   Codes for special purposes

One can search on key terms.  When I searched the term ‘pain,’ 12 terms popped up ranging from atypical facial pain to trigeminal neuralgia – not particularly helpful.  If one searches “pain + definition,” thirty eight (38) terms populate the response that describe type of pain, location of pain, function of pain, and behaviors that generate pain.  Not a satisfying result. So I searched on “title, definition, inclusion criteria, and exclusion criteria,” which yielded 67 terms that describe type of pain, function of pain, location of pain, types of pain, and psychosomatic disorders that might be coded when it is clear that the picture is muddy. Searching “Title + Definition + Inclusion + Coding Hint + Index” yields 136 separate terms that include all of the above and more discrete characterizations of specific types of pain with their own names.

Searching on XVIII Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified, produces a different result entirely.  Here we find something called ‘General Symptoms and signs (R50-69)’ with 5 terms that describe what most of us understand to be descriptors for the term ‘pain”:

R51     Headache, which includes facial pain (but not trigeminal neuralgia)

R51.0  Acute pain

R52.1  Chronic intractable pain

R52.2  Other chronic pain

R52.9 Pain, not otherwise specified (NOS)

Attempting to get some clarity among these terms is difficult because, in general, like in the reality of the world in which persons with pain live, these terms are generally associated with globally defined terms.  For instance ‘chronic intractable pain’ has no associated definition, while ‘other chronic pain’ has a definition that includes personality disorder and somatic conversion disorder.  There is even something called ‘chronic pain personality type.’  I can’t tell you how many times I’ve spoken to someone in agony who is outraged that they have been classified with a psychiatric symptom that they don’t believe to be descriptive or reasonable.  And it stops the pursuit of a reason for determining the origin of their pain while impairing the overall diagnostic experience.

A search of the term ‘neuropathy’ yields 53 variants of conditions associated with damage to specific nerves and nerve functions.  Connecting these terms to ‘pain’ lies in the definitions section of individual conditions.  A search on the term ‘cancer’ generates more than 60 different terms and a search on the key term ‘cancer pain’ produced vague responses associated with cancers not otherwise specified or NOS.

Interestingly, the term ‘addiction’ yields 16 terms, not one of which shows up or cross references with conditions associated with the term ‘pain’ in any form – not headache, acute, intractable, or chronic pain.  While clarity may be lacking about the nature of pain, there is no confusion with the disorder of addiction for diagnostic purposes in the ICD-10.  And, as an aside, the Diagnostic and Statistic Manual (DSM-V-TR) specifically excludes chronic pain from the definition of addiction.

In the news lately the issue of codes for medical harms has been a topic of interest as CDC does not code deaths that result from medical harm (XX External causes of morbidity and mortality, Y40-84 Complications of medical and surgical care).  Further, suicide may often be hidden from view when it is classified as an overdose associated with medications.  Descriptors for suicide tend to be constructed in terms associated with section XIX Injury, poisoning and other consequences of external causes (T40 – is where you will find the codes for deaths associated with poisonings, opiates and their like).  Conditions of overdose associated with polypharmacy may also be mischaracterized.  Disease processes that lead to death while utilizing one or more medications may be inappropriately classified at death depending upon who is completing the death certificate.  Many remain concerned that this is particularly true where opiates are prescribed.

So a couple of observations here.  First, the ICD-10 requires specificity of report based on the physical examination of multiple body systems.  Our current pain reporting scales (with some exceptions) do little to point a physician in the direction of a specific problem.  Rating one’s pain on a scale of 1-10 or through a smiley face doesn’t reflect the diagnostic criteria in the ICD -10 or its’ predecessor ICD-9.  There are some exceptions - the McGill Pain Index - which helps you to identify where your pain is located and rate its’ intensity, but not everyone uses this scale. Second, we speak often about the subjectivity of the pain experience.  I’m not so sure this is valid.  While it is true that one person’s extreme crisis is another person’s best functioning level, patterns of pain are reflective of overall health and associated diseases, personal supports and motivations.  It seems reasonable to suggest that the way we collect data about the pain experience informs the way we utilize the diagnostic process and that in terms informs the diagnostic result and treatment regimen.

The ICD-10 was designed to be implemented with International Classification of Functioning (ICF).  Both tools are constructed around the assumption that health, wellness and illness or disability is the result of a complex interplay between the person and the environment.  It is not a tool for determining what treatment regimen to follow or what course of drug therapy to pursue.  The ICD-10/ICF framework was not meant to be utilized in isolation but designed to be used together with information about the impact of one’s health status in relationship to the demands of activities of daily living and interactions within the community.  This can actually be measured by a change from one’s status (well-being) to a loss or gain of functional status (reduction in activities of daily living and reduced or increased community functioning).  Pain is pretty black or white in behavioral terms.  However, a smiley face is quite unlikely provide information about your activities of daily living or community interactions and may lead to inappropriately drawn conclusions by a treating physician.

Each community imposes demands on interactions between the person and their environment – a rural community places different functional demands on an individual than a complex community with more complex demands. The national conversation relies on the data generated by billing codes derived from the ICD-10 during the course of a brief patient encounter.  As I discovered, and as you will too, there is a tremendous room for error if one asks an incomplete question – and as the source of population based data reported to government agencies as billing codes, we should question whether the ‘big data’ generated from its use performs as well as it should for informing public policy at large.  This is particularly true in cases where a clinician may upcode or apply a code that gets a service through their insurance company’s payment system.

It is important that we engage in transparent practices from both the clinician side and the patient side to get the conversation about chronic pain and addiction in the context of health care delivery right.  Better conversations that align the way we collect information and use it to inform our health care decisions assures better outcomes.  Physicians need to learn to value the consumer’s ability to use clear and precise terminology in describing their health conditions, body parts, medication experience, and the symptoms that bring them into treatment.  Making education a part of the treatment protocol is a requirement, not a luxury.

Consumers need to take charge of their knowledge and assert their right to a reciprocal conversation that puts everyone on the same team – and that means being informed about your body, the names of your body parts and their functions, your needs and values, and the possibilities for adequate health care. Review your medical records for accuracy at least once per year.  Review your health planning information with your loved ones or care partners and make sure they are part of the conversation with your treatment team.  Communicate together as your needs change or as better tools become available.

Tools are entering the marketplace that are focused on improving support to physicians and to patients and giving both more options in making health care decisions.  These are built on addressing the social indicators of community health and collaboration between different sectors of the community.  In the not too distant future these tools will interface broadly with EMR systems.  For more information about the International Classification of Diseases (ICD-10) and its’ companion tool the International Classification of Functioning (ICF) follow this link -

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Authored by: Terri A Lewis, PhD.

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Dian M. Lovejoy

Thankye Terri for yu’re hard work, this one is weary of bein accused of seekin drugs an worst yet, one D O.when this one showed her she wasn’t guzzlin pills but was takin less than prescribed, had t’nerve t’accuse her of hoardin them t’sell!!! Darned if she did an darned if she didn’t, just could no win. So again thankye for yu’re hard work. Be safe an blessed yatahii.

Martha, thanks for your expression of confidence. I would add that there are many voices of experience in the National Pain Report, other than mine. I intuit that our joint challenge is in finding places and issues where these voices can align, and organizing to make them more effective in changing prevailing conditions in the treatment — or mistreatment — of chronic pain patients.

Cathy M, I understand both the scientific and personal difficulty you are describing. Pain is generally regarded as “subjective” and a “symptom” of underlying medical disorders. Though many disorders can be confirmed in blood tests or imagery, there is no single test that can reliably and routinely be administered to determine who is in pain or to what degree. However, from 20 years of reading the medical literature on various forms of pain (as a technically trained layman), I have come to believe that especially in chronic neurological pain, there may be subtle genetic changes in blood factors after pain has persisted at high levels for a long time. I invite Terri Lewis to comment from her own deeper research, concerning the present state of science in that area.

Cathy M

All the practitioners I know (medical and mental health) are complaining both about the new classifications and the lack of time to master them - it’s profoundly unfair to the patients and might cause more of the medically-caused illnesses that are such a frequent cause of death these days. It’s clear that “pain” is not a category of its own, though researchers seem to be saying chronic pain IS its own disease. And until these researchers convince the profession to create a category (other than than miscellaneous “R” section you mention) there is little hope that pain will be treated with the attention it deserves.

However, I don’t think there’s a confusion between pain and addiction - from what I read, too many professionals and media are suggesting that reporting pain is used as an excuse to get drugs - this implies or assumes the pain is faked. This is the challenge - either to find a reliable (that’s important!) way to detect pain via testing, or to reverse that harmful assumption that someone reporting pain is faking it unless there’s some visible problem! I strongly believe this suspicion is a result of the shorter, more crammed doctor’s visits - no time to really question the patient and understand the problem.

Martha Arntson

The posts by Terri A. Lewis PhD, Richard A. Lawhern and Tracy Cabanting are by far the most important posts as I’ve seen yet as far as the National Pain Report and the article by Konnie Parke entitled “Painted into a Corner”. Posted on May 7, 2016 under “My Story” here on NPR. I will print some of these outstanding Posts and Comments for my Pain Management Physicians.

Terri Lewis

Tower of Babel.

Dr. Lewis, thanks for a very wide-ranging look into the challenges which both doctors and patients face in the description, attribution, and treatments surrounding pain. A logical conclusion from your narrative is that the ICD authorities need to convene a special task force to revise and re-write elements of their coding system, to reflect a more integrated understanding of what pain is and how clinicians may reliably recognize and treat it as a symptom of medical disorders or as a discrete medical entity in itself.

I would add that I have long been active as a critic of the DSM and ICD definitions for such terms as “Somatic Symptom Disorder” and “Functional Neurological Symptom Disorder (Conversion Disorder).” I consider both to be founded on extremely weak medical evidence., comprising primarily professional surmise by financially self-interested “therapists” who claim to treat these fictitious disorders. I have also read the testimony of many patients who were actively harmed by the assignment of psychosomatic diagnosis labels in their medical records. Such labels are a kiss of death for being seriously considered as a reporter of one’s own medical conditions and symptoms.

For others concerned with such harms, my researched article on the Global Summit for Diagnostic Alternatives of the Society for Humanistic Psychology may be worth a read: “Psychogenic Pain and Iatrogenic Suicide”. See (2013)

Also useful may be “It’s NOT All In Your Head” on Mad in America, re-published by Dr. David Healy on See (2013)

Terri, This is without a doubt the best post I’ve seen here! Nice work!