The chronic pain epidemic caused by misinformation

How the false narrative of the opioid epidemic is causing a chronic pain crisis

  Two weeks ago, a man shot an executive of United Healthcare; it was all over the news.  There was limited compassion for this executive and family, because it unearthed the anger of so many people who have suffered needlessly in the current healthcare system, largely because of insurance policies that deny claims and underpay doctors. Before they found the suspect, Luigi Mangione, I suspected he may have been suffering from a condition that was undertreated because of insurance denials.  I was not the only one who thought this. But unlike others I also suspected he may have been suffering from chronic pain.  Shortly after Mr. Mangione was arrested, I learned he not only suffered from chronic back pain, but he also suffered from a tick-borne chronic illness called Lyme disease, a disease that causes cognitive fog and distortion, fevers, general malaise and fatigue, among a host of other symptoms.

Was he a sociopath?   Was he a violent person? Or was he a normal functioning person who at a young age was essentially crippled with pain and illness and snapped? Was he all three?

I have many patients that fit his description. I am one of them.  The sad fact is that persons with chronic pain are more likely to harm themselves than to harm others. A recent study (Themelis et al., 2023) indicated that 8.8 percent of suicides had undertreating chronic pain as a key factor.

  I’ll let you in on a secret. If you talk to a pain management doctor behind closed doors, they will tell you that opioids are the most effective  pain relievers out there. Opium poppy has been used for centuries to treat pain and other maladies. A 2022 US Pain study showed this. Prescriptions were reported as the most helpful category of treatment (77%); self-management techniques were next at 31%, above OTC medications (27%), assistive devices or braces (24%), supplements, vitamins, or herbs (22%), medical cannabis (21%), mind-body and behavioral health options (20%), and interventional procedures and surgeries (17%).

Patients now, more than ever, have pain that is undertreated, and they are showing up in my office in distress, as their functionality declines. They are unable to be prescribed opioids even in some of the direst situations—especially if they are a woman or a person of color. In my practice, I am seeing patients in immense pain being denied effective pain management.  I can do little about it, and it infuriates me. The reasons they cannot get the treatment they need are based on misinformation.

As a patient with pain and a trained health professional, I have watched this trend happen from the 2000s, when I first began experiencing severe unrelenting pain from a partially herniated disk, which was eventually fixed with a two spinal surgeries in 2014, to now, where I have been experiencing severe pain from endometriosis, which went undiagnosed for years. I had surgery for the endometriosis in August and am now relatively pain free for the first time in decades.

I tell you this because as a part of my treatment plan, I have been on opiate therapy, and off, and it helped me to function, go back to school, raise two children and get my license in Marriage and Family Therapy. It wasn’t perfect, the side effects were terrible, and I constantly felt stigmatized by friends and family.  I took my medicine as prescribed, was subjected to urine tests every month, and maintained treatment, by  showing  up every month to get a refill.

This was just ONE  more doctor I had to see, amongst many.  It was a full time job managing my pain.  

I did not become an addict. I did not overdose. I did not sell my pills or  go “doctor – shopping”, and unlike addiction, this medication kept me functioning.

So I know of what I speak, as patient and therapist. There was and still is a place for opioid therapy for patients with pain, and it is virtually impossible to be prescribed anytjing other than Tylenol or anti-inflammatoris, which have a negative impact on your kidneys.

 I want to set the record straight; the facts do not match what you have undoubtedly heard about the “opioid epidemic” supposedly sweeping our great nation the media, left and right.

I will challenge your viewpoint. If you have lost someone to addiction, my heart goes out to you, but please be open to hearing what I have to say, because many more people are losing lives due to chronic pain. 60 million Americans suffer from chronic pain, 20 million from intractable pain. 

This is a more nuanced conversation

            The current narrative is that patients who start opiate protocols will become addicted. Full stop. Or their friends or family will find the medicine and become addicts. Then, they will overdose. Does this happen? Of course. But this is a very, very nuanced situation. You’d be surprised that it happens far less than you think. It is a combination of factors, not just opioids. And it RARELY happens to black and brown people because they are usually not prescribed anything but Advil or Tylenol, even after major surgeries.

The data simply does not support the opioid epidemic.

In the recent journal article, "Perspectives on the Opioid Crisis from Pain Medicine Clinicians," authors Gary W. Jay and Robert L. Barkin examine the complexities of the opioid crisis, from the perspectives of pain medicine clinicians.

They found a significant data conflation in the opioid crisis, particularly in how deaths involving opioids are reported. Specifically, deaths caused by  illicit opioids  (such as fentanyl and heroin) are often grouped together with those involving  prescription opioids, leading to misleading statistics. For example, the CDC historically included deaths involving illicitly manufactured fentanyl (IMF) and its derivatives in the category of "prescription opioid-related deaths," which artificially inflated the perceived role of prescribed medications in overdose fatalities.

 This conflation obscures the actual dynamics of the crisis, as the majority of opioid-related deaths are now linked to illicit drugs rather than properly prescribed medications. Additionally, challenges such as incomplete toxicology reports, unclassified substances on death certificates, and the inability to distinguish pharmaceutical fentanyl from its illicit counterparts further complicate accurate reporting. The authors argue that such misrepresentation fuels policies that disproportionately target prescription opioids and their prescribers while failing to address the larger problem of illicit drug use. They emphasize the need for clearer, more precise data to inform effective strategies for tackling the opioid crisis.

You have heard about the criminality of the pharmaceutical companies in the early 2000s that misinformed doctors that addiction was extremely unlikely.  This is a separate issue, but the criminality has fueled the  narrative of evil opioid epidemic that exists today. This information has been further amplified by the media, both left and right, has led to a dire situation of misinformation, leading patients to be afraid of opiates even in cases where they are needed.

 If  you are a person with pain, you are probably all too aware of this issue; you are likely going from doctor to doctor, being offered injections, non-steroidal anti-inflammatories, spinal cord stimulators, nerve ablations and a host of other ‘‘procedures” which are often not helpful, but are very profitable for the doctor. Even when they do help, these procedures should be part of an overall holistic plan, that may also require pain medication.  These injections are often painful.  

Violation of our Rights as humans.

 It is considered a human right to have pain treated. Prior to the 1990s,in response to veterans suffering from pain due to war injuries,  there were pain centers that offered a range of multimodal treatments, including physical therapy to improve mobility and strength, psychological interventions like cognitive-behavioral therapy to address the emotional and mental health aspects of chronic pain, biofeedback to teach patients to control physiological responses to pain, occupational therapy to assist with daily functioning, and alternative treatments such as acupuncture, yoga, water therapy, and mind-body techniques like meditation. These programs provided holistic care, addressing the biopsychosocial dimensions of pain and improving both functionality and quality of life.

 This multifaceted approach was very effective. However, to boost profits.  insurance companies eliminated coverage for these treatments in the 1990s, and many interdisciplinary centers were forced to close due to a lack of funding. This left opioids as the most cost-effective and accessible option for managing chronic pain, disproportionately impacting lower socioeconomic patients who could no longer afford comprehensive care. These patients were left with few or no alternatives for managing their pain effectively, creating a reliance on opioids as the primary treatment. .

At the same time, doctors and hospitals started to take pain more seriously, identifying pain as the fifth vital sign. You’ve seen this in just about every hospital or doctor’s office: The Pain Chart, 0-10. It has a series of faces indicating how much pain you are in.

So, as pain was accepted as a legitimate health crisis, the options for treatment reimbursable by insurance were extremely limited. Doctors had little choice but to begin prescribing opiates, especially for patients living with intractable pain with terminal diagnoses and chronic non-cancer pain, as it was considered humane and cost-effective. And the degree of criminality by many of the drug companies, led to high rates of addiction. Drug companies intentionally   misinformed doctors and patients about the addiction potential. Prescriptions were easily obtained from primary care, dental care, and other disease specialists. In poor white urban areas, opioids were overprescribed and overused. Some were diverted to the streets.

The unintended damage of the CDC Guideline

In response, in 2016, the Centers for Disease Control and Prevention (CDC) released a guideline intended to promote safer opioid prescribing practices and address the growing opioid epidemic. This guideline was created with no pain doctors on the committee.

Originally the guidelines were intended as voluntary recommendations for primary care physicians, but instead, they were adopted as mandatory regulations in many states despite their lack of robust evidence-based support.

Following the guidelines, there were sweeping changes across healthcare systems:

- Doctors applied the guidelines broadly, even to populations not intended to be covered, such as cancer patients, post-surgical cases, and those experiencing acute pain from conditions like sickle cell crises.

- Medicare implemented strict limits on opioid dosages, which led some patients with legitimate prescriptions to be denied necessary medication.

- The guidelines discouraged increasing opioid doses above 90 morphine milligram equivalents (MME) without strong justification, but many healthcare providers interpreted this as a hard limit. Consequently, abrupt tapering and discontinuation became common, even though the guidelines did not advocate for this, resulting in severe withdrawal symptoms and other negative outcomes for patients.

In their paper, Authors Barkin and Jay assert that this rigid implementation led to widespread harm, particularly for patients with chronic pain. For example, it often resulted in forced dose reductions, abrupt discontinuations, and refusals to prescribe, further harming patients who relied on opioids for functionality and quality of life, and that the misapplication of these guidelines for opioid prescribing has led to today’s chronic pain crisis.

Many, many physicians stopped prescribing opioids due to fear of losing their medical licenses. Regulatory and legal pressures. Scrutiny from the DEA, state medical boards, and healthcare institutions, made prescribing opioids increasingly risky for doctors, even when patients had legitimate medical needs.

The authors of the study warn that the unintended consequences of these policies include untreated or poorly managed pain, which can lead to increased risks of mortality, faster cognitive decline, dementia, and diminished quality of life. Chronic pain patients may lose functionality, suffer job loss, experience familial strain, and turn to illicit drugs or suicide as a last resort.

With much of the current data on long-term opioid use and alternative treatments being incomplete or methodologically weak, the authors stress the urgent need for more robust research to guide balanced policies. They call for insurance companies to restore the interdisciplinary pain centers and revising prescribing guidelines to ensure they address patient needs without creating fear among physicians. By reinstating patient-centered, comprehensive care and addressing the systemic failures—including the misuse of the CDC guidelines—contributing to the opioid crisis, better outcomes for chronic pain patients can be achieved while reducing the risk of misuse.

Effective pain management is essential to healing from injuries and surgeries and to prevent medical trauma. When adequate treatments are withheld, patients may experience severe and prolonged suffering.

 Dependence vs. Addiction

Another aspect of opiate therapy was also lost to the conversation, as I began to see pharmaceutical adds for beupenorphine and something called “Opioid Use Disorder” pop up in the pain management offices where I worked. The CDC guideline was written by 12 recommendations for the prescribing of opioids for chronic pain by primary care clinicians in outpatient settings, excluding active cancer treatment, palliative care, and end-of-life care. The recommendations in the 2016 CDC Opioid Prescribing Guideline were based on a systematic review of the best-available evidence at the time, along with input from experts and the public and review and deliberation by the Board of Scientific Counselors (BSC) of the National Center for Injury Prevention and Control (NCIPC) (a federally chartered advisory committee). 

There were no pain management doctors on the committee.

As time went on, dependence on opioids was conflated with addiction due to the guidelines. Dependence involves the body’s adaptation to medication over time, leading to withdrawal symptoms if the drug is abruptly stopped. This is not the same as addiction, which includes compulsive use and behaviors like seeking drugs illicitly. The guidelines’ broad application led to stigmatization and undertreatment, even though they were not meant to address all pain management scenarios. The recommendations explicitly excluded patients receiving active cancer treatment, palliative care, or end-of-life care. The goal was to balance the risks of opioid misuse and addiction with the need to treat pain effectively. However, the guideline was not meant to dictate strict policies or override individualized patient care.

 CDC’s Clarification and Updated Guidance

In response to mounting evidence of harm, the CDC issued a clarification in 2019, acknowledging that the guideline had been misapplied. To further address the crisis, the CDC released updated guidelines in 2022. These revisions reinforced the importance of flexibility, patient-centered care, and avoiding rigid application of recommendations. The updated guidance seeks to protect patients with chronic pain from unnecessary suffering while still addressing the risks of opioid misuse.

 By the point the CDC reissued their statements, it was too late. The government has inserted itself via the DEA to make life difficult for both pain patients and pain physicians. I just read that the CDC is limiting the number of opiates available for valid prescriptions. This troubles me greatly. Being in severe pain, day after day, leads to poor quality of life and quicker deterioration.

 Physicians are worried about investigations that can lead to their licenses being taken away. Many decide to just stop prescribing opioids at all. This leads to the woeful undertreatment of pain patients face today.

Let me be clear. The government, insurance companies and pharmacies like Walgreens, CVS and Rite Aid have NO business inserting themselves between a doctor and their patient.

In fact, the 2022 study by the US, pain Foundation found that medications remain the most effective treatment option, but people with pain face significant barriers in accessing certain drugs. Nearly all respondents (79%) currently take prescription medications. A majority (77%) said prescription medications are the most helpful treatment in managing their pain.

• One-quarter (24%) said no side effect would prevent them from trying a medication to manage pain. This is because constant pain is unbearable. Sufferers will do anything, including going to the streets to find relief, which they are doing. Overdoses from illicit fentanyl and street opioids were included as part of the data.

• Nearly half of respondents take opioid medications (47%), although three-quarters of that group report a range of substantial barriers to obtaining their medications. Barriers faced by those taking opioid medications include decreased doses, stigmatization, and providers refusing to fill medications or outright refusing to treat the person with pain at all. 

Nearly all (94%) of those taking opioids said they attribute these barriers to the 2016 CDC opioid guideline.

Pain Medication and Medical Trauma

Medical trauma is defined as trauma resulting from interaction with health providers. Interactions can vary between severe accidents, life-threatening illnesses, and ER visits or can be a result of more subtle experiences of “gaslighting”, such as constant dismissal, invalidation, and/or minimizing symptoms at routine medical appointments.

Medical trauma is distinct from other forms of trauma in that it is experienced by past medical experiences, and as an ongoing somatic threat.  Chronic pain is experienced as an ongoing somatic threat; this refers to the constant feeling of not being in control of your own body—a relentless anxiety fueled by uncertainty: Will my condition improve? Will it ever end? Why doesn’t my doctor seem to understand? Am I stuck like this forever? Is this all in my head?

 When a patient is told they will be involuntarily weaned off of medication that has given them quality of life, they experience medical trauma, as this is a threat to their pain relief. They have little control over whether a doctor will prescribe them opiods, and at this point, loss of control can lead to most of the behavior changes that friends and family believe is a sign of addiction. However there is a difference. There is a term for this called pseudo-addciton. Psseudo addiction results when Inadequate treatment of the patient's pain led to behavioral changes similar to those seen with idiopathic opioid psychologic dependence (addiction). The term pseudoaddiction is introduced to describe the  syndrome of abnormal behavior developing as a direct consequence of inadequate pain management.

“An individual with signs of pseudo-addiction hunts for more pain medication for self-care. An addicted person, meanwhile, cannot control his or her need for the drug and is destroyed by chasing the feel-good effect of the drugs”

 Furthermore, loss of effective pain management can lead to an inability to function, absence from work, behaviors like addiction, but for a much different reason.

 As you will read in my upcoming book, “Medical Gaslighting and Medical Trauma; Navigating the Healthcare System for Patients with Chronic Pain and Invisible Illness”, there are multiple factors causing the chronic pain crisis we are in. Research on trauma nd the central nervous system as well as something called central sensitization can explain why two people with the same surgery or illness can have different results; one may develop chronic symptoms while the other does not. 

Hopefully, this conversation will continue and insurance companies will start to cover integrated treatment plans in order to reduce the need for opiates. I say this because being a patient dependent on opioid prescriptions alone is likely at some point to lose the ability to be prescribed a medication that gives them some quality of life. I am discouraged for these patients, and the unnecessary suffering that is unleashed by the misappropriation of the CDC Guideline.