The Real Story Behind the Overdose Epidemic

By Stefan Franzen, Guest Columnist

A recent commentary in The New York Times by German Lopez (“The Perils of Legalization’) flatly states that prescription opioids caused the overdose epidemic.

“The problem began with a legal, regulated drug: prescription painkillers,” Mr. Lopez writes, while building a case against legalization as a solution to our drug problems.

“Many of the people now using heroin or fentanyl began with painkillers. And drug cartels started to more aggressively ship heroin and fentanyl to the U.S. once they saw a promising customer base in the growing number of painkiller users.”

Mr. Lopez is confused. Heroin has been illegal in the U.S. since Congress passed the Harrison Act in 1914, yet that hasn’t stopped millions of Americans from trying heroin, just as Prohibition failed to stop people from drinking alcohol. The same is true for other illegal drugs, such cocaine, LSD and marijuana.

Prescription opioids are legal drugs when obtained by a doctor’s prescription. To suggest that we tried legalization and it failed is simply not true. Perhaps Mr. Lopez is confusing the liberalization of opioid prescribing that began in 1997 with legalization. In that case, yes, there was a movement in the medical community and by some drug makers to expand the use of opioids for pain.

Mr. Lopez does report correctly that many of the problems that arose during that period resulted from the failure of the Drug Enforcement Administration to carry out its responsibility to investigate when there was evidence of massive shipments of painkillers to rural counties by companies such as Purdue Pharma.

The role of the government in failing to protect consumers is the real story missed by the mainstream media, who are too busy informing the public about the latest lawsuit against pharmaceutical companies and opioid distributors. The consumers who were hurt the most were, and still are, persistent pain patients.

Of course, it is also tragic that many people were caught up in opioid prescribing and became addicted, due to a complete failure to investigate when Purdue began sending millions of OxyContin pills to rural counties in states like West Virginia and Tennessee. The mistake made here was not “legalization.” It was permitting greed and corruption to co-opt an effort by the medical community to reach people who had the greatest pain.

It is a false narrative that the overdose epidemic arose from the expansion of opioid prescribing and that drug cartels are only targeting pain patients.

Recent data from the Centers for Disease Control and Prevention show why that is a totally false assumption. The CDC estimates that nearly 108,000 people died from overdoses in 2021, a 15% increase from the year before. Drug deaths involving synthetic opioids – mostly illicit fentanyl – rose to 71,000, and there were 33,000 deaths linked to methamphetamine and other stimulants.  

Only 13,000 overdoses last year were linked to prescription opioids -- about 12% of all drug deaths -- but there is no data available to tell us how many of those overdoses involved patients who were actually prescribed the drugs. It’s safe to assume most of those who died took a prescription opioid intended for someone else that was bought or stolen. Or perhaps they took one of the millions of counterfeit pills flooding the country.     

Overdose deaths due to illicit fentanyl and other street drugs have been rising for years, yet nearly every media story continues to exaggerate the role of prescription opioids, leaving the public with the completely mistaken impression that doctors prescribing to pain patients caused the overdose epidemic. Commentators like Mr. Lopez, who have few facts to back up their statements, have no idea how much harm these statements cause to our most vulnerable citizens.

There was no “legalization” of prescription drugs, since they were already legal. And it was not a failed experiment to treat people in pain with greater decency -- just greed, corruption and incompetence that spoiled efforts to bring some quality of life to patients who suffer the worst types of pain, whether it is sickle cell disease, ankylosing spondylitis, psoriatic arthritis, Ehlers-Danlos syndrome, muscular dystrophy or adhesive arachnoiditis.

Others who suffer terrible pain are wounded veterans, car accident survivors and burn victims. I did not mention cancer, which obviously can be extremely painful, only because cancer is the one disease that commentators sometimes admit should be treated with opioid therapy. Lacking a pain meter to provide data, I will simply point out that any disease that causes substantial physiological changes, inflammation or tissue degeneration can be intensely painful. We should all respect that fact. We are all susceptible to pain.   

We must meet the anti-opioid zealots whenever they write or speak and call them out for their inaccurate and ill-informed commentary. Sadly, forums like National Public Radio and The New York Times did not respond to my attempts to call attention to the facts they got wrong. As a scientist, I believe in evidence.

Stefan Franzen, PhD, is a Professor of Chemistry at North Carolina State University.

Franzen is the author of “Patient Z” – a book that looks at pain, addiction and the opioid crisis through the eyes of a patient who can’t find good pain care because opioid medication has been criminalized and many doctors are now too afraid to prescribe it.

Emergency Treatment of Arachnoiditis After Spinal Injection

By Dr. Forest Tennant, PNN Columnist

In rare cases, symptoms suggesting adhesive arachnoiditis (AA) may occur after a spinal tap or epidural injection (therapeutic or obstetrical). These early symptoms may include localized lumbar pain, headaches, burning sensations, dizziness, leg weakness and bladder dysfunction. Spinal fluid leaks or blood in the spinal canal are often suspected in these cases.  

If symptoms indicate the possibility that AA may be developing, we recommend emergency treatment to hopefully prevent the spinal nerve inflammation from spreading and becoming chronic. 

A problem that we have routinely discovered is that medical practitioners commonly have the false belief that they can see signs of AA on an MRI when symptoms begin or within a few hours or days after a spinal tap or epidural injection. But AA typically does not show on an MRI for at least four to six weeks. Consequently, early emergency treatment must be based on patient history and symptoms, rather than on MRI findings. 

At the First International Congress on Arachnoiditis and Tarlov Cysts in 2010, physicians Donna Holder and Antonio Aldrete recommended that methylprednisolone 500 mg be given intravenously every day for five days as an emergency treatment for AA.  

Since that time, a variety of intravenous methylprednisolone attempts with different dosages and frequency have been used by physicians as emergency treatment to prevent AA. Dr. Aldrete opined that intravenous methylprednisolone is only effective in preventing AA if given within 60 days after the spinal tap or epidural. 

We have used the following alternative treatments to intravenous methylprednisolone: 

1. Medrol (methylprednisolone) six-day oral dose pack

2. Ketorolac 30 to 60 mg injection for three consecutive days

3. Medroxyprogesterone 10 mg given twice a day for six days

In some, but not all cases, AA symptoms will abate during the week that either intravenous methylprednisolone or the alternative treatments are administered. In most cases, however, symptoms reduce but don’t totally abate. The reason for this is unclear, but a reasonable assumption is that spinal canal inflammation may not be totally reversed once symptoms begin. 

If pain and other symptoms don’t totally abate, we recommend that the patient begin a three-component medical protocol for AA described in this bulletin, which includes nutritional, physiologic and pharmacologic elements. Patients should remain on these medical treatments until and if their pain and other symptoms resolve. 

It is unclear why only a small percentage of persons who have spinal taps or epidural injections develop AA. It is also unknown why symptoms that begin after these procedures usually don’t abate. 

A New Handbook for Practitioners

Our new book, "Clinical Diagnosis and Treatment of Adhesive Arachnoiditis” is now available on Amazon. 

This handbook for medical practitioners has been written for one simple reason.  AA is no longer a rare disease.  We conservatively estimate that there are at least 1.75 to 2.75 million adults in the U.S. who have AA.  

In the past, the cause of their back pain was often listed as unknown or inappropriately labeled as failed back syndrome, degenerative spine or simply low back pain. 

It is our fervent hope that this book will help medical practitioners and their patients diagnose and treat this most debilitating disease.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from a bulletin recently issued by the Arachnoiditis Research and Education Project. Readers interested in subscribing to the bulletins should click here.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.   

Roger Chriss: Remembering a True Helper and Advocate

By Pat Anson, PNN Editor

“Roger was a good friend and caring person. He will be missed tremendously.”

“May this dear, wonderful, kind man rest in the peace he deserves. Free of pain.”

“Heaven just got a great mathematician. Heaven's gain. Our loss.”

Those are just a few of the heartfelt tributes being posted online about PNN columnist Roger Chriss, who was a longtime advocate and friend to people living with Ehlers-Danlos syndrome (EDS) and other rare diseases.

Roger died unexpectedly on May 2 at a hospital near his home in Kirkland, Washington. He was 56 years old. 

Although Roger lived with EDS – a chronic and progressive disease that affects the joints, blood vessels and other connective tissues -- it’s unclear if that contributed to his death.  His brother Neil says Roger experienced chest pains and drove himself to the hospital, where he was diagnosed with a mild heart attack.

“He was given blood thinners as part of standard care. He was due to be released and suddenly collapsed and was found with no pulse and no blood pressure,” said Neil Chriss. “In trying to figure out what had caused the collapse they found he had lost a lot of blood internally, so they suspected this had to do with the combination of blood thinners and E-D related weakness in blood vessel walls.

“You should all know that my brother derived great meaning being part of your community. We talked frequently about E-D and the difficulties both mental and physical that go along with it. It’s sad for me to remember that he talked about losing people from the community being an all-too-often experience.”

ROGER CHRISS

Roger was an active member and strong supporter of The Ehlers-Danlos Society, where he co-hosted a support group for men with EDS. He was the first recipient of the organization’s Community Advocacy Award.

Roger grew up in Westchester County, New York where he developed an early interest in mathematics, music, computers and foreign languages. He graduated from Wesleyan University in 1987 with a major in East Asia studies. He later earned a Master’s degree at the Monterey Institute of International Studies and remained there as a faculty member.

Roger was fluent in Japanese, Spanish, French, Latin and other languages. He was a prolific writer and authored two books that reflected his diverse interests: "A Comedy of Time" and "Translation as a Profession."

Roger became a columnist for PNN in 2017 and later joined our board of directors. I can honestly say I learned something new from every column that Roger wrote, whether he was debunking myths about the opioid crisis, challenging the hype about medical cannabis, or advocating for more funding of rare disease research.

I admired Roger’s dedication to the truth, in an age when misinformation, hype and political dogma drives too much of the news coverage about healthcare. He brought an abiding concern about patients to every issue he wrote about, and a farsighted view of where it might take us.

In recent years, Roger posted almost daily on Inspire, an online health community for patients, where he supported and made many friends in the EDS and rare disease community. He used the screen name “Seshet” – a variation on the name of an ancient Egyptian deity of wisdom, science and mathematics. It was a fitting nickname for Roger.

“Seshet was truly a guiding light to me and so many others through this pandemic,” one poster wrote. “I’m sure he is in heaven calculating the probabilities of why this happened to him, but I know in his core he understood the unpredictability of life.”

“While his life was too short, his life had great meaning. He was so very wise and generous with this community, a true helper, which I believe is life’s highest calling,” said another.

Roger’s family is planning a private memorial for him. In lieu of flowers, they’re asking friends to consider making a gift to The Ehlers-Danlos Society. Click here for details. 

My Botched Anesthesia During Surgery

By Victoria Reed, PNN Columnist

Have you ever had elective surgery that didn’t go as planned, but instead caused more pain? Did it make you think twice about having surgery again?

Having a chronic illness means that some surgeries are necessary to improve quality of life. People suffering from rheumatoid arthritis (RA) often end up having surgeries, as joint pain and deformity are common complications. Surgeries can include joint replacement or removal of rheumatoid nodules -- subcutaneous lumps or masses that can attach to underlying tissue.

Nodules are associated with more severe forms of RA and usually occur near elbow joints or joints of the hands and feet. About 20% of RA patients suffer from these nodules, which usually aren’t painful, but can cause complications.

I am one of the 20% of RA patients who has developed these nodules. Years ago, I had one growing on the underside of my right big toe. It grew so large that it was causing pain, and I was having trouble walking on that foot. I was compensating for the discomfort by using just the outside of my foot, so I consulted with a podiatrist to talk about having the nodule removed.

The doctor advised me that it could be surgically removed, but also that it could possibly grow back over time. Considering that it was affecting my ability to walk comfortably, I decided to go ahead with the surgery.

For some reason, the doctor did not want to use general anesthesia during the surgery and opted for local injections of an anesthetic to numb the toe.  This did not go well for me. As the surgical assistant injected the medication, he must have hit a nerve because it caused some of the most excruciating pain of my life! It was more painful than childbirth. As I screamed in pain, he injected the toe THREE more times, each one being equally painful.

Needless to say, that was a very traumatic experience, but the toe was indeed numb enough to cut into. After the nodule was removed, which was described in the pathology report as a “wad of gum” type of mass, I was sent home to recover, hopeful that the toe would be as good as new.

It wasn’t.

As the anesthetic wore off, I realized that I had no feeling in the toe. I called the office and inquired as to why I still had no feeling in it and was told to give it time. They assured me that the sensation would eventually return. A week passed, then another week, and still there was no feeling in parts of the toe. Other parts had a new and strangely painful tingling sensation. I called the office again and was told to allow more time for full sensation to return.

Nine years have passed and there has been no improvement. I suffer from sharp, stabbing nerve pain in that toe, which is still completely numb in certain spots. Unfortunately, the nodule has grown back as well. I’m not sure if the injections caused the nerve damage or if the actual removal of the nodule did, but had I received general anesthesia, I would not have had to suffer through those excruciatingly painful injections.

Because of that horrible experience, I am now very reluctant to consider elective surgery again.

We, as chronic pain sufferers, must always advocate for ourselves. Or have someone advocate for us, if we are unable. We should question the decisions made by our medical providers if they don’t seem right or if we are unsure or nervous about a procedure. While there are many competent doctors and surgeons, unfortunately, there are some that are not and who don’t always have our best interest in mind.

I never could have predicted the horrible outcome of that surgery. But the lesson I’ve learned is to ask as many questions as possible prior to any procedure and to thoroughly research any physician who is going to cut into my body. One good question to ask is, “How many of these surgeries have you performed?” Newer surgeons can be perfectly capable, but the more experienced a surgeon is, the better the outcome will likely be for you.

RA can present many challenges, mainly severe pain, but it can also affect a patient’s mobility and morbidity. I will need to decide if I want to have another surgery to remove the recurrent toe nodule or decide if it is something I can learn to live with. Either way, I have learned some valuable lessons.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Drug Addiction Is the Problem, Not Prescription Opioids

By Christine Kucera, Guest Columnist

The Centers for Disease Control and Prevention (CDC) is the leading national public health institute of the United States. The agency is responsible for protecting the public from health and safety threats. 

In my opinion, the CDC has no business writing clinical guidelines! Medical guidelines for healthcare/disease management, medication management, and clinical decision making should be developed, reviewed and approved by a diverse team of clinical subject area specialists and key stakeholders, including medical specialists, medical groups, advisory teams, advocates and patients. Not regulatory agencies!

The 2016 CDC opioid guideline, as currently written, has harmed and damaged millions of lives, and caused unspeakable suffering. In effect, the CDC sanctioned torture by failing to promptly address and correct the negative impact of its guideline on individual patient care, addiction and pain management treatment and resources.

The CDC has clearly overstepped its authority by creating a guideline meant to regulate the use of prescription opioids. Any regulatory measures which prevent patients from accessing prescription opioids as indicated for their health and well-being are unethical and should be reconsidered, if not totally withdrawn.

The CDC continues to propagate the false narrative that any patients requiring prescription opioids for any type of pain are or will become addicts. And it continues to claim — without any evidence — that if opioid prescriptions are limited in quantity, type, duration and dose, there will be a reduction in addiction, overdose and death. The facts indicate otherwise. Overdoses are at record high levels.

The True Causes of Addiction

Substance addiction exists because our government has failed to address its true causes, which include poor access to addiction treatment, unethical pain treatment, lack of quality care standards across medical institutions, and lack of legislative laws that protect patients from suffering needlessly. 

Addiction is caused by preventable and manageable health disparities, untreated and undertreated mental and physical suffering, genetic metabolic variability, lack of resources, lack of all-inclusive healthcare insurance, lack of provider managed pain care, lack of treatment centers, lack of access to appropriately prescribed medications, lack of drug monitoring systems, lack of access to mental health and pain care providers, lack of timely access to a comprehensive network of providers, and lack of individualized care. 

Maybe if the CDC actually focused on the above health and safety issues, we would have guidance on solving the real problems. The CDC has failed miserably to recognize that individual pain care is as unique as the patient who is suffering in pain. Every single person that has pain seeks relief.

Relief comes in many different forms, both healthy and unhealthy. These forms of relief may be self-directed and/or medically managed by clinical staff and providers, and includes exercise, yoga, rest, mobilization, heat/ice therapy, massage, mindfulness, acupuncture, Chinese herbal medicine, bio-feedback, diet, weight loss, surgeries, water therapy, bicycling, strength/weight training, martial arts, immunotherapy, TENS, anti-inflammatories, anti-seizure medication, muscle relaxants, antidepressants, biologicals, medical/recreational cannabis, CBD, kratom, prescription opioids, illicit/illegal drugs and alcohol — to name a few. 

Every Patient is Different

The journey each patient in pain takes is individual. The pain you've experienced and lived with is different from mine and everyone else’s.  

The terms “acute pain” and “chronic pain” are also misleading and are part of the false narrative. Pain is a symptom. Its management depends on its physical and/or mental cause, not how long it lasts. Pain is the body's way of sending up a red flag that something is not right.

Duration means nothing in the world of pain, as every minute of the day is different in type, in location and in intensity. Pain goes through cycles, and no person experiences pain the same way.  

Until the individuals who wrote this God awful, evil guideline experience pain that is unrelenting, agonizing, non-stop, 24/7 for their entire life, they should back off the false narrative, go back into their non-medical cave, and leave the medical decision making up to the actual physicians who are trained to manage pain with all the tools available and at any quantity required by a patient.  

What the CDC should be addressing are the sources of suffering, identifying at-risk individuals and providing a framework for implementing resources and systems of care that are fluid and adaptive to the unique circumstances of each individual.  

There are too many outstanding questions and issues which also continue to impact patients and providers. What are the FDA and DEA’s roles and responsibilities? How do their policies meet the objectives of the CDC guideline to reduce addiction, overdose and death? What impact do they have on medical providers treating patients in pain? 

Addiction is the public health issue requiring CDC input, not the utilization of prescription opioids for pain treatment. 

Christine Kucera is an intractable pain patient survivor of over 30 years. She lives with reactive psoriatic arthritis, spondylitis, polyarthritis, sacroiliitis, degenerative disc disease, dermatomyositis, mixed connective tissue disease, psoriasis, lupus, spinal radiculopathy, thoracic outlet syndrome, endometriosis stage IV, and other painful conditions.

Prior to becoming disabled, Christine was a healthcare research systems developer and analyst for federally funded CMS, AHRQ, and NIH grants and programs. 

A Pained Life: My Teaching Moment

By Carol Levy, PNN Columnist

There are not many positives to being in chronic pain, or having the disorders and diseases that cause it. But I think I found one.

Being harassed for not being able to wear a mask was a horrific experience for me. No good could come out of it, I thought, until I realized it could have been a perfect teaching moment.

I complained to a friend, who also has trigeminal neuralgia, how upsetting it was to be mask shamed, and that I feared it would happen again.

Her response was to send me a business-sized card to hand out that explained why I couldn't mask.

It reads: “I have facial pain. Any touch to the side of my face causes horrific pain. That is why I can’t wear a mask.”

I liked the card, but didn't feel comfortable handing it out. I put it in a drawer and left it there. But then, at the dental clinic, I was repeatedly handed a mask and told, “You need to put this on.”

Each time I had to pull out my doctor's note and explain why I would not and could not mask. It became very tiresome.

Then I remembered the card. I thought it needed to be more explicit and instructive, so I made another card that says this:

“Trigeminal neuralgia is a neurological disorder of the 5th cranial nerve that gives sensation to your face. With trigeminal neuralgia the sensation is severe, often excruciating pain, on its own as well with any touch to the affected area of the face involved.”

On my next visit to the dental clinic, I was handed a mask. Instead of saying, “I can't” and having the back and forth of “Why not?” and “A mask can't hurt you,” I handed her my and card said, “This is why I can't mask.”

She read it and said, “Okay. You don’t need to mask.”

It was a perfect way to educate her about trigeminal neuralgia, and cut off the debate that often ensues.

It’s easy to make a card. The small size of a business card makes it difficult to do anything but present the most important parts of the disorder or disease we have. For instance, for CRPS it could read:

“I have a disorder called CRPS, or complex regional pain syndrome. It is caused by dysfunction of nerves that carry pain signals to the brain. It causes spontaneous and touch-induced pain that is often disabling.”

Of course, that is not a full description of CRPS, but gives just enough information to be instructive and hopefully understandable to those who ask why you can’t do something.

Handing out the card makes me feel good. It’s a teachable moment. Being able to educate others may be the best thing we can do for ourselves. 

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

What Are the Long-Term Risks of Prescription Opioids?

By Roger Chriss, PNN Columnist

A standard critique of prescription opioids is the absence of good long-term data on safety and efficacy. Clinical trials are generally short-term and last only a few weeks, so questions about cumulative long-term risks, including addiction and overdose, remain unclear.

Clinical trials that run for a year or more are complex and costly. Attrition may be high and outcomes may be muddied by the inevitable effects of aging, disease progression, and life events. There are also ethical issues involved with subjecting patients to long-term trials where they may receive nothing more than a placebo.

In other words, launching new trials is often impractical. Fortunately, there are a few other ways to answer questions about long-term opioid risk.

Compare Outcomes

First, we can compare outcomes among patients whose key difference is opioid dosage. In a recent Canadian study, researchers looked at over 2 million individuals in Ontario given an opioid prescription between 2013 and 2016 for pain. They identified 1,121 patients who had a fatal or non-fatal overdose – a minuscule overdose rate of 0.0055 percent.

But when compared to patients getting relatively low daily doses of 20 morphine milligram equivalents (MME), those who received 200 MME or more had a “high hazard of overdose.”  

A dose of 200 MME may be an extreme example, since Canadian guidelines recommend that initial doses be limited to no more than 50 MME. But researchers said their study proves the value of guidelines. 

“Although the absolute risk of an opioid overdose within the first year of prescription opioid use is low, better alignment of opioid initiation practices with guidelines may reduce opioid-related harm,” they concluded. 

Compare Opioids 

Second, we can compare two opioids: oxycodone and hydrocodone. In a retrospective analysis of patients in Oregon between 2015 and 2017, researchers found that after an initial prescription in opioid-naive people, 0.3% experienced a fatal or non-fatal overdose and 2.8% refilled an opioid prescription at least six times, what the researchers considered “chronic opioid use.” 

Patients who received oxycodone were less likely to develop chronic use than those receiving hydrocodone, but the oxycodone patients had a slightly higher risk of overdose.  

Based on that finding, researchers concluded that “hydrocodone may be the favorable agent” when starting people on opioids. 

Compare Odds

We can also use statistical inference to estimate risks. In an analysis of 13,884 U.S. adults living with chronic pain between 1999 and 2004, epidemiologists found that 5% died from all causes within 3 years and 9% died within 5 years.  

Researchers found that chronic pain patients on opioids had a slightly higher risk of death – and calculated an odds ratio of 1.06 for them dying within three years and 1.03 at five years compared to those not taking opioids.  

It’s hard to infer much from a study like that, because researchers didn’t establish a causal relationship between opioids and death. Since chronic pain itself raises the risk of dying, the findings could simply mean that patients on opioids are sicker, in more pain, and closer to death.  

Despite this, researchers came to the sweeping conclusion that “chronic pain increased the risk of all-cause mortality through opioid prescriptions.” 

Compare Health Outcomes 

Last, we can look at health outcomes. An alarming, preliminary study from Taiwan evaluated chronic pain patients on long-term opioid therapy and found they have significantly higher risk for cancer compared to those not taking opioids. 

The overall hazard ratio for the opioid group was 2.66 – which means they have over twice the risk of having many different types of cancer. 

“Long-term opioid use might be a significant risk factor for breast, gastric, colorectal, ovarian, prostate, lung, pancreatic, head and neck, and esophageal cancers and HCC (hepatocellular carcinoma),” researchers concluded in their study, which has not yet been peer-reviewed. 

Risks of Other Drugs 

These findings help shed light on the long-term risks of prescription opioids, at least compared to healthy control subjects who do not take opioids. However, that is not the situation faced by most people with chronic illness, who are often on multiple medications to manage their pain and other symptoms.  

As a result, we need to know the risks of non-opioid pain management options. For instance, the consequences of cannabis addiction are low compared to opioids. But the cancer risk appears to be substantially higher. A major review in BMC Archives of Public Health found that “cannabinoids including THC and cannabidiol are important community carcinogens exceeding the effects of tobacco or alcohol.”

The risks of non-steroidal anti-inflammatory drugs (NSAIDs) are well-known. According to a 2011 review, “chronic NSAID use increases the risk of peptic ulcer disease, acute renal failure, and stroke/myocardial infarction. Moreover, chronic NSAID use can exacerbate a number of chronic diseases including heart failure and hypertension.” 

For other non-opioid medications, we lack long-term studies. For instance, a 2017 Cochrane review on gabapentin for chronic neuropathic pain notes that “study duration was typically four to 12 weeks.” Cochrane also notes that only short-term trials were conducted for serotonin and norepinephrine reuptake inhibitors like duloxetine for fibromyalgia.  

As for non-pharmacological options like spinal cord stimulators, the situation is similarly uncertain. A new Australian study in the Journal of Patient Safety found that for every 10 stimulators that were surgically implanted, four had to me removed for various reasons. That outcome went unnoticed in short-term studies and emphasizes the need for more careful patient selection and monitoring of outcomes.  

There are real risks to prescription opioids but it would be simplistic to dismiss them entirely. As pain physician Antje Barreveld notes in a recent STAT News op-ed: “Opioids do have a place in pain control and can be safely prescribed, even at high doses, by following best practices while monitoring for risks and side effects.” 

Understanding the long-term risks of prescription opioids will be important as the CDC finalizes its revised opioid guideline, and as regulators, insurers and clinicians decide how to act on them. But more generally, we need long-term studies of all pain management modalities so that we can better understand their risks.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

Breathless: My Anger at a Failing Body

By Cynthia Toussaint, PNN Columnist

Once upon a time, life was easy. Breathing was a breeze, lungs filled with promise and hope.

Then I got sick. Really sick. Of late, when I look back at the last forty years, I’m uncharacteristically angry that my Complex Regional Pain Syndrome stole my life, taking that breath away.

I’m spitting mad that my body keeps failing me. It’s seemingly giving me the finger for having a positive attitude and taking care of myself, as all I get is sicker and sicker. I’m tired of being the good sport, forever the one with “super human strength” who flashes a smile no matter what.

I hate 2022, as it’s trending to be my most miserable year yet. If it ain’t one thing, it’s another. To start, I had a monster of a virus all of January, most of March, and my symptoms are here again in mid-April. I can’t shake this ever-revolving bug that perplexes my doctors.

They can’t figure out my debilitating fatigue, laryngitis and diarrhea, all complimented by vertigo and, yes, difficulty breathing. Even my once heavenly swims have turned into an exercise of wheezing and gasping.

I recently got a work-up including labs and chest x-ray, but everything came out normal. A friend mentioned her concern that I might have symptoms of an impending heart attack. Yeah, wouldn’t be surprised.

I’m also mad as hell because COVID never ends. At least not for me. When we were all in this together, the isolation was do-able. In fact, it was comforting because, for once, I wasn’t the only one alone.

But now I’m left behind because being immuno-compromised with an assembly of autoimmune conditions puts me at high risk for long COVID. I feel lonelier than ever watching the world reconnect, while hearing of new variants and upcoming surges.

To top it off, my vaccines and booster shots were hell. With each dose, I’m left reeling with intense fibro flares, hives and many of my previous chemotherapy side-effects. Oh, did I mention I fought Triple Negative Breast Cancer in 2020, the WORST thing I’ve ever been through?

Breathe, Cynthia. Breathe.      

And then there’s this. During the rare times I escape the condo, N95 dutifully strapped on, I resent the never-ending pity looks and pointing because I use a wheelchair. Folks, it’s been FOUR DECADES of this transportation humiliation. I feel like I’m going to lose it the next time someone looks beyond me to ask my partner John what my name is. Or gives me the classic, “It’s so good that people like you get out.”

I find myself staring in awe at people who can walk without a thought. They’re free and don’t even know it. I must admit, these days I resent them for it. When I’m outside, seems it’s always just me and some little old man who are in this wheeled imprisonment. I even resent the old man, cuz he got his turn at life.

This post wouldn’t be complete without exhaling a potentially catastrophic cliff-hanger. Yeah, I’m talking about the aforementioned “Big C.” Since remission, I live in constant fear that it will recur much more aggressively in the first two years, what Triple-Negative is masterful at!

A few days ago, I went in for my periodic breast exam, a ritual that keeps me from hyperventilating during my MRIs. The exams have always been clear, which helps me get through the maelstrom of “scanxiety.”

I felt oddly confident this go-around, even enjoying small talk with my oncologist. After all, this was the lead up to my two-year MRI. I was almost home free when the energy in the room shifted. Completely. My doctor found an enlarged lymph node under my arm that he thinks is a recurrence. Or, better yet, a whole new cancer.

I’m suffocating.   

While I await my imaging results, I’m short-tempered and yell a lot. The cats run under the bed. Fearing the worst, I wonder if my body can fight aggressive cancer again. Let’s face it, I won’t have a good shot the second time around.

Also, in my darkest moments, I’m not certain I have a life worth fighting for. I love myself deeply, but am struggling these days to find gratitude in a world that feels devoid of grace.

I don’t get it. I swear, I’ve been a good person my whole life. I’ve played by the rules, worked hard and always helped the less fortunate.

People tell me to be positive, but I’m just angry. Maybe my rage will turn back to strength and unflagging perseverance. Maybe not. All I know is that I can’t catch my breath. 

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

HIPAA-critical Vaccine Exemptions

By Mia Maysack, PNN Columnist

A friend recently invited me to a concert that demanded proof of full vaccination against covid or at least a medical exemption from getting one. 

I want to make it clear that I'm not an "anti-vaxxer." But I personally do not feel that I can tell another person what to do with their own body. I exist as a chronically ill person due to circumstances that were entirely out of my control as a child. Through the years, managing these ailments has been daunting, and mainstream treatment options inflicted even more complications that I still live with to this day. 

For credibility’s sake, you should know that I received an average of 30 injections every three months for about 15 years as a method for pain control. The last time I went in, my world was flipped upside down by such a bad reaction to the shots that I haven't returned for that treatment or any other mainstream approaches to medicine.  

Although I'm aware it could've been an allergic reaction (they've been producing cheap medication overseas), I have no reason to expect such a thing won’t occur again. The words “rare” and “unlikely” don’t mean much when bacterial meningitis threatened my young life through an untreated ear infection. That wasn’t a foreseeable circumstance either. So the fact remains: no one can be sure what they are getting. Due to how difficult it has been to survive in this body up to now, I'm not content on taking any more unnecessary risks. 

I requested and was denied a vaccine exemption, the desire for which did not stem from any place of entitlement, but because I cannot gamble with my quality of life. The fact that I'm expected to is an illustration of the deeply rooted problems within our healthcare system and proves that, despite what they claim, it is not operating from a place of patient-centeredness.  

I don't find contentment with the reassurance that few adverse reactions have been reported from covid vaccines, because I personally know people who have experienced them and there simply hasn't been enough time passed for anyone to even begin to know what things could happen down the line. 

I was told that an exemption isn’t something my clinic can do, not even for religious reasons, because they consider it a “personal choice.” The only way to have it granted is to literally attempt an injection and experience adverse effects. But that’s something I’ve already – and barely -- lived through. 

Suffice to say, this is not a one-size-fits-all situation. They encourage everyone to get vaccinated, but why does that encouragement feel more like I’m being forced? I know what's best for my body and if/when I do take the jab, it’ll be on my terms and not because I was bullied into it. 

The job of medical professionals is to honor and be a partner in care. I know this because I was once one of them, but had to step off my beloved hospital floor for good after a setback in my health. Back then, under the Health Insurance Portability and Accountability Act (HIPAA), we could’ve lost our jobs for peeking into our own medical charts. Yet now we’re suddenly expected to carry personal health information on us at all times and surrender it to everyone who demands it.  How is that not a HIPAA violation? 

Regardless of your stance on the science, it’s undeniable that this conduct is questionable at best. Why are we continuing to allow it? The intention here is not to shame anyone for their choices, but to draw attention to our freedom of choice essentially being eliminated. 

There are many different forms of “justice” but our systems have been designed in ways that evade them, along with any responsibility for their lack of equity.  It’s undoubtedly a hindrance, not only for patients, but our constitutional rights. If this is how our institutions are operating, we should be holding them to public accountability.  

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

Sacroiliac Joints: An Overlooked Cause of Back Pain

By Victoria Reed, PNN Columnist

I’ve suffered from low back pain for a long time, beginning in my 20’s. I would have terrible spasms, pain, stiffness and leg numbness, which left me unable to walk or function at all.

I went through the usual testing to determine the cause and was asked if I had had some kind of accident or injury. The answer was always no. The only thing I could think of that may have contributed to the back pain was the fact that I ran track throughout my elementary and high school years. I figured all that running might have taken a toll on my spine.

An MRI revealed a bulging disk at the lumbar level. I was offered a nerve block, which helped relieve the pain for a while. But when I had children, the pain returned -- probably because the strain and added weight from pregnancy put extra pressure on my spine. 

A doctor offered a series of epidural spinal injections in which a steroid would be injected to try and shrink the bulging disk. The first shot didn’t work at all, but I was encouraged to try another one. The second didn’t work either. I was then put on pain and nerve medications, which did help somewhat.

Because I was using a prescription opioid, I had to go back periodically for regular exams to see if the meds were helping and still necessary. During one of those routine exams, the doctor asked me to point specifically to where the pain was coming from. I had been doing my own research online and thought the majority of the pain wasn’t coming from the bulging disk, but from my sacroiliac (SI) joints.

The SI joints are made up of the sacrum and the ilium of your pelvis, and are located on the right and left sides of your lower back. They are held in place by strong ligaments. Rheumatoid arthritis (RA) might increase the risk of having trouble with these joints. Though it’s commonly said that RA primarily affects the hands and feet, any joint can be affected.

I mentioned that to my doctor, but he wanted me to have more epidural steroid injections. I refused, partly because they didn’t help before and partly because I’m diabetic, and high-dose steroids cause the blood sugar to go up.

From there, I was sent to physical therapy. The therapy sessions were centered around strengthening my core abdominal muscles, and they did help reduce the number of times my back went out. However, the SI joint pain was still consistently there. During subsequent doctor appointments, and finally after some convincing, the doctor agreed that the SI joints were causing my pain.

SI joint pain is an often-overlooked cause of back pain, and can be confused with disk pain. It’s important to find any and all causes of persistent back pain because the treatments can be different.

Some years later, I agreed to try steroid injections into the SI joints, despite the effect I knew it would have on my blood sugar. Steroids can also make your body resistant to insulin.  I figured it was worth the risk if there was a chance at pain reduction. However, I knew that it would not be something that I could do regularly, and while not 100% helpful, there was some temporary modest relief. 

Since then, I’ve been able to identify what triggers the SI joint pain, and I use several different modalities for relief, including ice, low-dose oral steroids, stretches, and prescription pain medication.

How to Tell the Difference

Pain that is from a bulging or herniated disk can radiate down one leg and cause numbness or tingling. This pain is usually centered in the lower back, whereas pain from the SI joints can be pinpointed to one side or both. Pain from a bad disk can travel all the way down to the feet or toes, while SI joint pain usually stays above the knee.

Leg weakness can be very severe in a disk rupture, even to the point where you are dragging your foot. If you lose bowel or bladder control, that may be a sign of a serious condition called cauda equina syndrome and is considered a medical emergency!

Weakness in a leg from SI joint dysfunction usually isn’t prominent, but you can have numbness and tingling. SI joint pain can be triggered by going from a sitting to a standing position or by sleeping on one side. A trip or a stumble can also set off SI joint pain, and sitting for long periods of time can make either condition worse. Bending or twisting can aggravate a bulging or herniated disk.

While it’s always helpful to pay close attention to your symptoms, imaging is usually necessary. MRI is a valuable tool to get a good look at bulging or herniated disks. I would also keep a pain diary to make a note of what your pain triggers are and where the pain occurs. Make a note also of what relieves the pain (if anything).

All of these things can be helpful with assisting your doctor in making a proper diagnosis. Only until you get the correct diagnosis can you take steps to begin treatment and possibly achieve some lasting relief.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

A Pained Life: Living Unseen

By Carol Levy, PNN Columnist

AARP Magazine recently had an interview with Michael J. Fox, the actor who has Parkinson's disease. Fox spends much of his time working to teach others about the disease.

“I am a motivator and someone who tries to demystify and normalize Parkinson's - to take away any shame or sense that it should be hidden. Because unfortunately, it will inevitably reveal itself,” Fox said.

I read those words and thought, how can the pain community do this? Is there any way we can demystify and reveal what chronic pain is like? My answer is invariably, no.

Pain does not reveal itself easily to others, absent people in pain grimacing, making painful sounds (“Ouch, that hurts!”) or being vocal about their pain (“I can't go, because of my pain.”) Often those behaviors are seen as dramatizing, being lazy or a hypochondriac.

I contrasted this with a recent cooking competition I watched on TV. Prior to entering the studio cooking area, the contestant chef said, “I recently hurt my shoulder.” He added that he hoped the pain would not affect his performance. And it didn't.  He won.  

Afterwards the contestant said, “I didn't notice the pain in my shoulder until after the round was concluded, although the pain was there the entire time.”

No host or judge was there to comment, but I wondered. When he said he had pain, it was just accepted. There was no one in the wings asking, “How can it be you had the pain but could still function in the kitchen?” or “If your pain is so bad, how were able to get past it?”

Or, had he lost the contest, someone might have asked, “Did you intend to use your shoulder pain as an excuse if you lost?”

I come back to this issue -- the invisibility of our pain -- because other disorders like Parkinson’s have visibility. You can see how they impact the lives of Michael J. Fox and others.  

I wrote in a recent column about my experience of being “mask shamed” for not wearing a mask at a hospital. The week after that incident, I was mask shamed again by a conductor on a train into Philadelphia for refusing to mask.

While masks are mandated on public transportation, there are exemptions for certain groups of disabled. Because I have trigeminal neuralgia, I fall into one of those groups.  I bring this up because, when I talked with a manager, I found myself in a small debate with him.

“Had I had an oxygen tank with me, there would have been no issue. The conductor would not have done what she did,” I said.

The manager responded, “Well that is a very different situation.”

“Why is that? That person can’t wear a mask and I can’t mask either.”

“But you can see the reason for why she can't mask,” he replied.

I found myself having to educate him in the only way we can.

“If I had cancer, diabetes or heart disease, you can see none of those but that doesn’t mean I don’t have them.”

He was quiet for a moment. “Oh yeah, I see your point.”

“I am invisible, understand, simply because people refuse to see me,” wrote Ralph Ellison in the Invisible Man. “When they approach me they see only my surroundings, themselves or figments of their imagination, indeed, everything and anything except me.”  

Ellison was writing about being unseen as a person of color, but the description defines pain sufferers as well. 

Maybe, when we try to explain our invisible illness, we need to point out the obvious, as Akiko Busch did in her book, How to Disappear: “The entire world is shining with things we cannot see.”

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

Endometriosis: My Long Road to Diagnosis and Treatment

By Victoria Reed, PNN Columnist 

My first experience with chronic pain occurred early in life. As a teen, I often had unexplained bouts of pelvic pain and very severe menstrual pain, which left me vomiting and incapable of functioning for at least a full day every month.  

Although Advil (ibuprofen) is a common treatment for menstrual pain, I didn’t discover its use for menstrual cramps until I was over the age of 20. Before then, I tried other over-the-counter pain relievers, but they were all ineffective at controlling the pain.  

In between the painful periods, a dull pelvic ache settled in. It was always there, and after a while it just seemed like a normal part of life for me. But one day I came to the realization that it wasn’t normal to have near constant pelvic pain and decided to seek the help of a doctor.  

I first consulted with a doctor who was in my HMO medical plan. He decided to perform a diagnostic laparoscopy. That’s a surgical procedure in which a scope is used to view the abdominal and pelvic organs. I was told that nothing abnormal was seen.  

Not convinced that everything was normal, I sought the help of another doctor about a year later. The new doctor performed another laparoscopy and found evidence of endometriosis. However, he ended the procedure without doing anything to fix it. At the time, I didn’t really know what endometriosis was and the doctor said that the treatment for it was outside of his skill set. I knew I had to keep looking for a doctor that could actually help. 

After some time passed, I saw a third doctor who did weekly ultrasound “treatments” on my pelvis. I’m not exactly sure how that was supposed to work for pain relief, because it didn’t improve anything. I thought it was a little strange, but was willing to try anything. That doctor would later be convicted of gross sexual imposition for his inappropriate conduct with female patients.  

By the time I was in my mid 20’s, I once again decided to seek help for the unrelenting menstrual and pelvic pain. The fourth (and final) doctor I chose was a reproductive endocrinologist and OB/GYN. Little did I know, I hit the jackpot with this one! Not only was he kind and compassionate, but he was skilled at restoring fertility. At the time, I was convinced that I was going to be unable to have babies, as I had read that endometriosis could cause infertility.  

After our initial consult, the doctor came up with a plan to give the pelvic organs a “rest” by inducing a menopause-like condition with a hormone treatment called Lupron. Lupron has been used to treat endometriosis since 1990 and was found to reduce pain in the pelvis and abdomen. It works by suppressing the amount of estrogen in the body and essentially stops the menstrual periods.  

I had two Lupron injections over a period of six months and felt great! However, I wasn’t allowed to stay on the medication indefinitely due to potentially damaging side effects.  

Unfortunately, after some time off the medication, my symptoms gradually returned. In another year or two, I went ahead with another 6-month course of Lupron. Again, during the time I was on it, I felt no pain. It is believed that the endometrial lesions respond directly to circulating estrogen, so pain intensity can fluctuate with the changes throughout the menstrual cycle. The lesions can land anywhere inside the body, including the colon, bladder, lungs or other internal organs and can cause pain that’s not confined to just the pelvic area.  

After my second course of Lupron, I was told that if the symptoms returned, I could consider yet another laparoscopy. As expected, the pain returned again and I consented to a third surgery. However, this laparoscopy would be different. My doctor performed a lysis of adhesions -- a procedure that destroys the misplaced endometrial tissue that cause pain.

He was also able to free up pelvic adhesions and use a procedure to unblock a fallopian tube, thereby restoring my fertility. This surgery was life-changing. Finally!  

The chronic pelvic pain improved, and I went on to have four pregnancies and three successful births. Unfortunately, the menstrual periods continued to be quite painful.  

It’s been a long road, but I was lucky and feel very grateful to find a doctor who was willing and capable of doing what was necessary to help relieve my pain. I recommend that anyone with a diagnosis of endometriosis seek out a reproductive endocrinologist for the best possible treatment. I also advise anyone with this diagnosis to never give up. There is help and hope!

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Lobbying for Better Access to Migraine Care

By Mia Maysack, PNN Columnist

Last week the Alliance for Headache Disorders Advocacy held its 15th annual Headache on the Hill, with over 200 patients and advocates from 48 states visiting close to 300 congressional offices to lobby and raise awareness about migraine and headache disorders. Like last year, most of the participants attended virtually online due to the pandemic. 

As a person living with never-ending head pain from a traumatic brain injury for over two decades, it has been an honor to participate in this event for multiple years. During that time, we've continued to make progress, such as more funding for migraine research, expanding options for symptom management, obtaining access to oxygen therapy, and helping to launch the VA’s Headache Centers of Excellence — which are all meaningful strides towards healthcare reform.

However, I have never been prouder to be a part of this year’s Headache on the Hill (HOH), which had two major “Asks” for our congressional representatives:

Ask #1

Support investment in Headache Centers of Excellence for Indigenous Communities, with $5 million per year in additional appropriations. The goal is to have the Health & Human Services Secretary designate 6 new headache centers in mostly rural reservations, with an emphasis on expanding options for telehealth, so that Native Americans and Alaskan Natives living in isolated areas will be able to connect with and consult with medical professionals online.

Ask #2

Have the General Accountability Office (GAO) issue a report on funding priorities for the National Institutes of Health (NIH), specifically as it relates to headache disorders. Although migraine impacts roughly 40 million Americans and is the main cause of disability for women under 50, migraine research still receives some of the least funding from NIH, even though it has a strategic plan to consider the "burden of individual diseases” when making funding decisions.   

There is a pressing need for more migraine research if we are to find new treatments, invest in viable solutions and alleviate the need for more providers who specialize in treating head pain. Headache and migraine disorders need to be prioritized at NIH -- not above or before any other health condition, but alongside them. 

Government accountability is a part of public service. We need to know in what ways are we moving forward and how our money is being spent.   

Navigating the healthcare system can be challenging. I cannot begin to keep track of the countless hours I've devoted to sitting in waiting rooms at clinics, fighting for insurance coverage, begging for referrals, convincing providers that my ailments are real, and attempting many treatments in desperation for relief.

But as horrendous as my experiences have been at times, nothing compares to the malpractice and neglect that is experienced by patients in marginalized communities. 

It has been documented that Native Americans and Alaskan Natives have the highest rates of disabling headache disorders. They are 40% higher than other races, with a particularly high impact on men. Despite this, Indigenous communities on average have only one neurologist for every 125,000 people!   

Health resources that are caring, regardless of cause or condition, are investments in people. We have huge disparities in equitable care. Why is it that communities with the biggest needs have the fewest resources?

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

I Was Mask Shamed for Having Invisible Illness

By Carol Levy, PNN Columnist

For years I have worn shirts on which I write my political position. I love wearing them. And I wear them proudly. But since the onset of covid and masking, I have worn a different shirt that reads:

“Can’t mask due to medical issue. Trigeminal neuralgia. I have a doctor's note. I am fully vaccinated and boosted.”

This shirt I do not wear proudly. My medical situation is no one's business but my own. But to keep people from yelling at me, I wear the shirt. And it works. People are usually nice about it.

That was not the case when I went to my local hospital for a blood test. Since covid, if I needed to go to the hospital, I called first to tell them, “I can't mask due to a medical issue. Will this be a problem?”

I was told I had to get permission from administrators, but ultimately got the go-ahead to come in.  I’ve been to the hospital a few more times for tests. Each time they let me in with no or little fuss, so when I had to go the last time, I did not call first.

The welcome desk receptionist signed me in, no issue. The registrar signed me in, no issue. I sat for about 20 minutes, noticed by employees and ignored by them, while waiting for my name to be called.

Then a woman dressed in medical scrubs came over to me with a mask in her hand. She did not take me aside. She confronted me right in front of other patients: “You have to wear a mask or leave.”

“No, I can't wear a mask for medical reasons,” I told her. “In fact, I have been in here two or three times with no problem.”

She reiterated: “You have to put on a mask.”

“No, I can't mask. I have a facial pain disorder and can't wear a mask. That why I wear this shirt,” I said, pointing to my shirt.

Another woman joined the fray: “You have to leave if you won’t mask.”

I was getting angry. “I have trigeminal neuralgia. Do you know what that is? Are you nurses?” I asked. “If not, go look it up. I can't wear a mask. And I have come here a few times since covid with no problem about my not being able to mask. Do you think I like wearing this shirt?  You shouldn’t be talking to me like this in a public setting.”

The two women walked away, only to call me back a few minutes later, into a room that was still within earshot and view of other patients. A man in lab clothes had joined them. The woman in purple scrubs (I found out later neither she nor the other woman were nurses or medical people) held out a plastic shield, “You can wear this.”  

I felt defeated, but no one was going to force me to set off the pain by wearing a shield. “No, I told you. I can't have anything on my face.” 

She pushed the plastic shield towards me. “You have to wear one of these then.”

I was trying to remain calm. “Do you know what trigeminal neuralgia is? There is a reason they call it the worst pain known to man and the suicide disease.”  

She continued to insist, “You have to mask.” Then the man spoke up.  "I'm the lab tech.  I won't let you in the lab or take your blood unless you mask.”   

Finally, for some unbeknownst reason, they capitulated. Immediately after registration I was told to walk to the lab. The technician who stated unequivocally that he wouldn't let me into the lab or take my blood did both. 

It was a horrid experience, humiliating because it was done publicly. Mortifying in that I had to defend having pain from an invisible illness. Despicable in that I was forced to fight to stop them from demanding I make the pain worse. Just one more unanticipated horror of being a chronic pain patient.  

Had I said, “I can't mask. I have a lung issue,” and they saw an oxygen tank, chances are good I would have been left alone or quickly taken care of. 

But I said I had something they couldn't see and had never heard of. To them it seemed bizarre. “You can’t touch your face without pain?” That must be made up. 

In the world of covid, how much extra do we have to endure?   I ask myself, often, will there ever be a time, covid or not, when I won't have to explain myself?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

Revised CDC Opioid Guideline a ‘Band Aid for a Stab Wound’

By Emily Ullrich, Guest Columnist

After years of state sanctioned torture, people in pain have finally received a small reprieve from the Centers for Disease Control and Prevention, in the form of a revised draft of the agency’s opioid prescribing guideline.

In the new draft, the CDC acknowledges some of the harm inflicted by its 2016 guideline, by adding language that gives doctors more flexibility in prescribing opioids and encourages them to practice “individualized patient centered care.”

While this perspective is a welcome departure from the original guideline, we need to go further. As a disabled chronically ill patient, I have personally experienced the stigma and misinformation that comes with being prescribed opioids. As a patient advocate, I’ve also watched in horror as an untold number of suffering patients deprived of opioids committed suicide.

There are four main issues that still need to be addressed by the CDC. The first is that many patients on long-term opioid therapy have rare diseases such as Complex Regional Pain Syndrome (CRPS) and Ehlers-Danlos syndrome. Because these and other incurable illnesses aren’t even mentioned in the guideline, it is assumed that most pain patients have treatable conditions such as low back pain or acute injuries that will improve with time. This is not the case. There is a large segment of the patient population that cannot be cured. For them, symptom management with opioid medication is their only option.

Second, it’s important to emphasize that all patients are different. Individual factors like genetics, metabolism, tolerance and more can determine how opioids affect a patient.  A dose that may be “a lot” for one patient might be very ineffective and too low a dose for others.

Third, because of the harms that have been imposed upon pain patients, it is extremely important that providers be advised to treat them with compassion and respect.  Stigma, shame and puritanical morals-based thinking that paints people with pain as having “character flaws” only inflicts more harm and makes it more difficult for them to get help.

Finally, although the CDC has abandoned its previous recommendation that daily opioid doses not exceed 90 morphine milligram equivalents (MME), I can't help but notice new language in the guideline draft that cautions doctors about exceeding 50 MME, a dose that is low for many patients. I fear that 50 MME will be taken above all the other verbiage of the 2022 guideline and be enforced as the new hard limit.

The revised guideline is a small step in the right direction, but patients need more than a band aid for a stab wound.

Emily Ullrich lives with CRPS, Sphincter of Oddi Dysfunction, Carpal Tunnel Syndrome, endometriosis, Interstitial Cystitis, migraine, fibromyalgia, osteoarthritis and chronic pancreatitis.