Twenty Years of Treading Water, Waiting for Advances in Pain Care

A patient advocate’s view of “progress” in pain management.


As a moderator for online peer-to-peer patient forums, I’ve interacted with tens of thousands of pain patients. I began this volunteer work in 1998, as a Board member of the US Trigeminal Neuralgia Association, now called the Facial Pain Association. Since then, much has changed in the practice of medicine, but I’ve seen no developments that improve conditions for those living with chronic pain. I should know. My advocacy work has personal roots. My wife has trigeminal neuralgia, and our daughter is an early-onset Parkinson’s patient.

Some changes in the regulatory environment surrounding chronic pain have done enormous harm, which I describe in detail below. My hope is that we may witness significant positive changes in these realities over the next 20 years – but ideally, much sooner than that.

Treatment Options are Largely at a Standstill

In the treatment of facial pain, sometimes called orofacial pain – where much of my early research and advocacy work focused – not much has happened. Options today are much as they were in 1990.

With NSAIDs generally ineffective for neuropathy, or nerve pain, and opioids recognized as essential primarily for intractable cases, many people with facial nerve pain rely on medications used off-label, meaning drugs that are not FDA-approved for their specific type of pain. Common prescriptions for neuropathy include anti-seizure meds, gabapentinoids, and tricyclic antidepressants.

Surgical procedures such as microvascular decompression (which relieves pressure on the cranial nerves), radiofrequency rhizotomy, and other types of nerve ablation may reduce or eliminate chronic facial pain for years – but it frequently seems to come back. Nerve blocks offer only temporary relief. Stereotactic radio surgery (eg, technology known as Gamma Knife or Cyber Knife) has fallen out of favor due to the short duration of its benefits. At the margins, various alternative and complementary therapies, such as cognitive behavioral therapy, acupuncture, and meditation can be helpful. But they don’t resolve pain completely.

Among  the 20 million Americans who have “high impact” pain that significantly compromises quality of life, individuals are often left unable to work or carry out typical daily activities. Isolation and disruptions to family life are widespread and often disabling beyond the immediate symptoms of pain itself.  I am among many who believe that focused research on treatments for neuropathy and greater collaboration between primary care and pain medicine practitioners is very much needed.

Among the 20 million Americans who have “high impact” pain that significantly compromises quality of life, individuals are often left unable to work or carry out typical daily activities. (Image: iStock)

The Information Explosion Has Brought About Pros and Cons

So what has improved? Healthcare information. The amount of information available to the public has exploded since the early 2000s. In 1998, a Google search on the term “Trigeminal Neuralgia” produced about 3,000 “hits.” In July 2020, the same search produces 2.65 million hits. In Internet search terms, even this result is small – because trigeminal neuralgia is a relatively rare disorder (there are about 12 new cases per 100,000 people per year.1) Most  medical practitioners will never see a case of trigeminal neuralgia.  

To back up for a second, trigeminal neuralgia affects the trigeminal nerve, which carries sensations from your face to your brain. Even light touches to the face, including brushing your teeth, can be excruciating.  

Search for “cancer” as a comparison, and you will be offered over 1 billion Internet documents.

The Pew Research Institute2 informs us that a solid majority of US adults have recently looked online for health information; many have had their self-diagnoses confirmed by a physician. However, this flood of information is sometimes a mixed blessing. Physicians complain of patients coming to them demanding specific treatments that may not be appropriate for their actual conditions.

There are also a plethora of online claims and patient testimonials manufactured by unscrupulous providers of unproven “alternative therapies” not covered by medical insurance. Pain patients can end up paying thousands of dollars for “dietary supplements” of doubtful content, bogus stimulation devices, or procedures that work no better than placebos. (Check out PPM’s top device guide to see what does work.)

Rising to this challenge, major medical centers and foundations have created online forums to provide validated information. The US National Library of Medicine offers access to more than 20 million abstracts, with 7.5 million full text articles available free. The National Organization for Rare Disorders (NORD) offers fact sheets for more than 1,200 rare disorders.3 The Health on the Net Foundation (HON) lists more than 8,000 online links that have been carefully certified for accurate and balanced reporting of healthcare information.4


The Opioid Policy Disaster Is Still Unresolved

This explosion of information has been overshadowed by a powerful whiplash effect that has destroyed millions of lives. Beginning in the 1990s, the historical trend in under-treatment of pain was challenged by a new slogan from the WHO: “Pain as the Fifth Vital Sign.” Pharmaceutical firms promoted (some would say over-promoted) opioid analgesic therapies as safe and effective treatments for both acute and chronic pain. With few other reliably effective pain therapies, physicians began to ease restrictions on opioids. Prescribing went up and prescriptions became associated with addiction and overdoses in many minds (despite lack of medical evidence for cause and effect), leading to  a declared opioid crisis and the CDC’s 2016 opioid prescribing guideline for people with chronic pain.

During the past four years, the CDC guideline has been hugely misinterpreted, leading states, pharmacies, and healthcare providers to discontinue or taper their patients’ opioid prescriptions – even in individuals using prescribed opioids safely and finding benefit for their pain. Large numbers of patients have been outright discharged or deserted by doctors afraid of being sanctioned if they treat with opioid analgesics.  And while the CDC has backtracked a bit, clarifying that abrupt opioid discontinuation is not recommended, and that prescribing decisions should be made be a case-by-case basis, the havoc wreaked by the original guideline has not been undone.

Most recently, the CDC formed an Opioid Workgroup to be overseen by the National Center for Injury Prevention and Control to review and revise its original guideline.  An expert panel is expected to publish its findings in late 2021 – 18 months from now, as people living with chronic pain conditions continue to seek relief so they can function.

In April 2020, CDC issued a Federal Register call for stakeholder comments on the management of acute and chronic pain. More than 5,400 individuals and organizations participated – the great majority of them highly critical of the agency.  Former members of the Department of Health and Human Services Inter-Agency Task Force on Pain Management, and leadership of the American Medical Association directly challenged CDC’s policy misdirection.

Among AMA  recommendations was to recognize the need for individualized care; to avoid “hard thresholds” for prescribing doses (such as the original guideline’s recommended 90 MME per day limit); and to avoid using single risk factors, including prescription drug monitoring program data or urine drug testing results as sole determinants in making decisions about a patient’s treatment plan.

As a patient advocate, I agree with many of the AMA’s points. But I would urge all parties involved in the current Opioid Workgroup review to not over-emphasize “risks” to patients.  Large scale studies of post-surgical patients inform us that the rate of diagnosed opioid use disorder in previously opioid-naïve patients is on the order of 0.6% – too low to measure or reliably control in routine medical practice.5,6

I also feel strongly that patients should not have to wait another 2 years for the bureaucracy to catch up.


In Summary

Regulatory policy change, science-based patient education, and pain research are all needed NOW, especially as so many individuals are missing regular care visits as a result of the COVID pandemic.

A key point of departure for such changes may well prove to lie in the 2016 finding of Drs. Nora D. Volkow, MD and Thomas A. McLelland, PhD, who wrote about opioid misconceptions:

“Unlike tolerance and physical dependence, addiction is not a predictable result of opioid prescribing. Addiction occurs in only a small percentage of persons who are exposed to opioids — even among those with pre-existing vulnerabilities... Older medical texts and several versions of the Diagnostic and Statistical Manual of Mental Disorders (DSM) either overemphasized the role of tolerance and physical dependence in the definition of addiction or equated these processes (DSM-III and DSM-IV). However, more recent studies have shown that the molecular mechanisms underlying addiction are distinct from those responsible for tolerance and physical dependence, in that they evolve much more slowly, last much longer, and disrupt multiple brain processes.”7

While the rest of the scientific, regulatory, and medical community catch up, we don’t need more years of treading water in place as people in chronic pain sink.  


Updated on: 09/03/20
Continue Reading:
Voices from the Opioid Crisis: 4 Years After the CDC Guideline Changed the Rules