In the years I've supported facial pain patients and their families, I've lost track of the number who have disclosed that they've been harmed by a doctor who wrote them off as a "head case". There are fancy scientific names for this process. One of the more recent terms is "Somatoform Pain Disorder", which the American Psychological Association is getting ready to write into the Diagnostic and Statistical Manual.
Of late, I have been researching papers which deal with some of the problems of this diagnosis. I am beginning correspondence with researchers and doctors who have published in support of the concept of so-called "psychogenic" pain. One of my emails went out this afternoon, and I thought I would share it with you -- patients who may be affected by the issue. I welcome any corrections or references that others here at Living With TN may be able or inclined to offer. This is long, for which I beg your pardon in advance.
Go in Peace and Power
Subject:RE: Validity of current somatoform disorder diagnoses: perspectives for classification in DSM-V and ICD-11.
From:Red Lawhern <■■■■■■■■■■■■■■■■■■■■■>
Date:Sat, 16 Apr 2011 16:36:11 -0400
Dear Dr Loewe, et al,
I have recently read the abstract of your 2008 article in "Psychopathology". I've copied the abstract below... From that abstract and others which parallel its conclusions, I would respectfully ask four questions and solicit your answers thereto.
First a bit about my background:
I write as a long-time patient advocate and web author for chronic neurological face pain patients and their families. Although my doctorate is in engineering systems, much of my career was spent in technology assessment and operations research. Thus I have skills as both an information miner and a writer for non-technical audiences. My wife has been a trigeminal neuralgia patient for 17 years. At first on her behalf and later in collaboration with other pain patients, I have researched this horrid form of pain on behalf of patients and their doctors, as well as other and co-morbid facial pain disorders. Since 1996, I have corresponded with over 2500 facial pain patients or family members. I was webmaster and a member of the Board of Directors of the US Trigeminal Neuralgia Association in the late 1990s. I continue direct patient support via several online venues, to the present day.
Next, my core concern:
In this work, I have naturally kept an eye on the evolution of practice standards for the treatment of face pain. And it is in this area that I believe the somatization of pain by psychological professionals can have truly terrible consequences for patients. For instance, the following is a quotation from the Website of no less an entity than the US National Pain Foundation, with regard to what is called "atypical trigeminal neuralgia"
"Atypical TN is a term often used to describe pain that does not have the characteristics associated with classic or typical TN. Patients who have atypical TN often have pain that may be continuous and may be described as dull, aching, or throbbing.
Atypical facial pain is a confusing term and should never be used to describe patients with trigeminal neuralgia or trigeminal neuropathic pain. Strictly speaking, AFP is classified as a “somatoform pain disorder”; this is a psychological diagnosis that should be confirmed by a skilled pain psychologist. Patients with the diagnosis of AFP have no identifiable underlying physical cause for the pain. The pain is usually constant, described as aching or burning, and often affects both sides of the face (this is almost never the case in patients with trigeminal neuralgia). The pain frequently involves areas of the head, face, and neck that are outside the sensory territories that are supplied by the trigeminal nerve. It is important to correctly identify patients with AFP since the treatment for this is strictly medical. Surgical procedures are not indicated for atypical facial pain."
While parts of this narrative are of positive benefit to patients, there are also misleading elements here. The description provided for atypical facial pain would apply equally to atypical Trigeminal Neuralgia. And although bilateral facial pain is somewhat less common than unilateral pain, it is by no means a matter of "almost never the case". Most fundamentally, based on my experience with patients, I believe a more accurate assignment of labels would be "bilateral facial pain of unknown etiology" -- a categorization which does not implicitly blame the patient or characterize them as malingerers. I am very concerned that the "somatomization" of pain gives medical practitioners an incentive to write off their failures or their lack of insurance-reimbursable time to monitor and assess complicated cases.
Patients who receive diagnoses of "atypical facial pain" are frequently referred by neurologists and other mainstream physicians to psychologists and psychiatrists. Not infrequently, the primary care physician is at pains to inform the patient to the effect of "I can find no medical explanation for your pain. I want you to see a mental health professional for assessment and counseling". In effect, the patient is being written off as a "head case" and denied further diagnostic investigation or treatment with other than anti-depressant drugs.
For a category of pain that is frequently referred to as "the most severe form of pain known to medical practice", and a disorder sometimes called "the suicide disease", the consequences to the patient can be almost incalculable. After a medical history and perhaps a psychological questionnaire, they are told that they are depressed, and receive a prescription for anti-depressant drugs -- sometimes being denied access to neuro-surgical second opinions as a direct consequence.
From this background, I would ask you as experts, for your opinion on four fundamental questions:
(a) Is there any publicly available body of consistently evaluated and documented case data that reliably establishes the validity of "somatoform pain disorder" as a medical entity? If so, please provide literature references.
(b) Is there any such body of data that establishes the validity of neuropathic pain being caused by the patient's mental attitude or depression (so-called "psychogenic" pain)?
(c) Is there any body of human trials data which establishes a causal relationship in co-morbid conditions such as chronic pain and chronic depression -- i.e., which condition causes which?
(d) Given that "somatoform pain disorder" is a diagnosis by elimination, is it conceivable that what we see in this diagnosis is not a "real" medical entity? Could this be instead an elaborate shared emotional denial by doctors of the reality of imperfect medical diagnostic methods? It seems to me that your abstract comes rather close to supporting that conclusion.
I look forward to hearing your thoughts and opinions on the above.
Richard A. Lawhern, Ph.D
"Giving Something Back"
Psychopathology. 2008;41(1):4-9. Epub 2007 Oct 18.
Validity of current somatoform disorder diagnoses: perspectives for classification in DSM-V and ICD-11.
Department of Psychosomatic and General Internal Medicine, Center of Psychosocial Medicine, University of Heidelberg, Heidelberg, Germany. ■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■■
BACKGROUND: The impending revisions of DSM-IV and ICD-10 provide an excellent opportunity to improve the diagnostic accuracy of the current somatoform disorder classification. To prepare for these revisions, this study systematically investigates the validity of the current classification of somatoform disorders.
METHODS: We searched Medline, Psycinfo and reference lists to investigate convergent, divergent, criterion and predictive validity of the current somatoform disorder classification.
RESULTS: Substantial associations of somatoform disorders with functional impairment and elevated health care costs give evidence for the clinical and societal importance of somatoform disorders and for the convergent validity of the current operationalization. The specificity of the current somatoform disorder classification, i.e. their divergent validity, is demonstrated by the fact that functional somatic syndromes and their consequences are only partially explained by association with anxiety and depression. However, the imprecision of the diagnostic criteria, which are not based on positive criteria but on the exclusion of organic disease, largely limits the criterion validity of the current classification systems. Finally, studies investigating the predictive potential of somatoform disorders are lacking, and to date predictive validity has to be considered as low.
CONCLUSIONS: The insufficient criterion and predictive validity of the present somatoform classification underlines the need to revise the diagnostic criteria. However, an abolishment of the whole category of somatoform disorders would ignore the substantial convergent and divergent validity of the current classification and would exclude patients with somatoform symptoms from the current health care system. A careful revision of the current somatoform disorder diagnoses, based on positive criteria of psychological, biological and social features, has the potential to substantially improve the reproducibility and clinical utility of the existing classification system.(c) 2007 S. Karger AG, Basel.
PMID: 17952015 [PubMed - indexed for MEDLINE]