The Era of No Diagnosis — Pain News Network
By Dr. Forest Tennant, PNN Columnist
Recently I received a report from a prestigious professional pain organization proposing that “back pain” is the only diagnosis assigned to this condition. They want to rule out any diagnoses like a herniated disc, arachnoiditis, sprain, strain, or rheumatoid spondylitis. Their reasoning was that pain treatment should be the same for all cases of back pain, so there is no need to establish an underlying causal diagnosis for every patient.
To me, their motivation was clear. It takes training, time, expertise and money to make a correct medical diagnosis, and this group only wanted to treat the symptom of pain. Or maybe they just want robots to take a pain complaint and apply a preconceived, non-human contact medical protocol as a treatment?
This non-diagnostic proposition goes hand in hand with the large number of articles that wish to declare pain as a disease rather than a symptom. Let’s be very clear: pain, as a symptom, can be part of a disease, syndrome, disorder or condition, but pain itself is not a disease.
Certain illnesses certainly cause pain. Common sense medical practice has included, and should continue to include, a search for the root cause of an individual’s pain. In addition, emphasis should be placed on the treatment of cause of pain rather than just treating the pain symptom. Diagnosis is the process of identifying the cause of a disease, whether it is a disease, condition or injury.
My recent experience studying adhesive arachnoiditis (AA) has revealed pathetic information about the inability of some physicians to make a diagnosis. In order to develop prevention measures and treatment protocols, we surveyed several dozen people who developed AA after epidural corticosteroid injection or lumbar puncture. In these cases, the individual has singularly attributed the development of AA to one of these procedures.
The startling statistic, however, is that barely a third of these people could give us the diagnosis that prompted a doctor to do an epidural injection or lumbar puncture in the first place. Lumbar punctures were usually performed in an emergency room, and only about half of these patients could even remember the symptoms that prompted the emergency visit.
A big disconnect has developed between primary care physicians, pain clinics and patients. In most cases today, a person with pain in the neck, back or extremities will first consult their primary care physician. In many cases, the physician will then refer the patient to the local pain clinic, expecting the clinic to determine a specific causal diagnosis and develop a patient-specific treatment plan.
This is what usually happens when a primary care physician refers a patient to an allergist, rheumatologist or cardiologist. The medical specialist makes a diagnosis and develops a patient-specific plan that the specialist or treating physician will follow when treating the patient.
But that rarely happens today when a primary care physician refers a patient to a pain clinic. Almost never a specific diagnosis is made, but a “one size fits all” pain treatment regimen is put in place. Or worse, the pain patient is diagnosed with “opioid use disorder” and placed on the addiction treatment drug Suboxone, even though he has been successfully maintained for years on opioids without abuse problem. The attending physician may never even see the patient again.
The result of this practice is that some pain clinics treat dozens of bona fide patients with no specific medical diagnosis other than neck, back, or leg pain, or “opioid use disorder.”
There are other unacceptable non-diagnostic scenarios these days. Severe chronic pain is often caused by a rare obscure disease such as AA or Ehlers-Danlos syndrome. Patients will often get their diagnosis of an unusual illness and present it to a doctor for care, who will state that they do not accept the diagnosis.
A patient may then dare to ask: “So what do I have and what is the treatment?” It’s hard to believe, but some patients are told, “I don’t accept this diagnosis, but since I don’t have another, I can’t treat you.
Another commonly told story these days is that of the patient who complains of “pain all over” and is prescribed a long list of medications, but is not given a causal diagnosis. Some patients went to see a dozen or more doctors, but none returned a causal diagnosis.
The opioid and COVID epidemics have obscured many positive diagnostic developments that have taken place behind the scenes and greatly assist in establishing a causal diagnosis. Improved blood tests for inflammatory and autoimmune markers are now available. Genetic and hormone testing can not only establish a diagnosis, but also provide a roadmap for treatment. And contrast magnetic resonance imaging (MRI), which distinguishes spinal fluid from solid tissue, has made specific diagnosis of spinal canal pathologies more accessible.
Every chronic pain patient not only deserves, but needs a specific medical diagnosis so that the root cause of their pain can be addressed, as well as to relieve the pain symptom. Without addressing the underlying cause of chronic pain, the patient is often condemned to a painful life of decreasing quality until death.
Modern medicine now has the knowledge and technology to do better. Why aren’t we?
Forest Tennant, MD, DrPH, has retired from clinical practice but continues research into the treatment of intractable pain and arachnoiditis through the Tennant Foundation Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.
The Tennant Foundation financially supports Pain News Network and its sponsors PNN Patient Resource Section.