My Story: 30 Years of Pain

By Rochelle Odell

Sad to say, but I am entering my 30th year battling the monster called Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). After three decades, I just call it by both names: RSD/CRPS

It was bad enough when the disease was triggered when I was 46. I had made a career change from aerospace to nursing, and moved out of California to take a new job not too far above minimum wage as a Critical Care Tech. After being a volunteer EMT, it was my dream to become an RN or trauma nurse.  So, I trekked to Georgia to start reaching for my dream.

My left heel was most unhappy with all the walking. I had a lifetime award for medical due to a work comp knee injury, which caused an abnormal gait and the heel pain.

After six months, plus physical therapy, I had a knee arthroscopy. The surgeon was also supposed to remove a painful heel spur, but didn’t. Instead, he accidentally severed a nerve in my left heel, immediately triggering what was then called RSD.

In less than five years, the monster spread to all four of my extremities. I had every therapy, blocks, multiple implants and other procedures, but all ultimately failed.

Back to California I trekked with unexplained, unimaginable pain. I had no job, no insurance except for work comp, and was alone -- questioning my sanity about the career change.

ROCHELLE ODELL

I was eventually placed on a medication only regimen, and for over 16 years was on high dose opioids, along with high dose Diazepam, high dose Lidocaine, and three other meds. Funny thing was, I did very well with them.

Was my pain gone? With RDS/CRPS? No, but it was controlled to the point where I could function. I drove, took good care of my small home, and remained active despite the severity of my disease.

Fast forward to 2016. Those of us suffering from unrelenting intractable pain remember all too well what began that year. Thank you, CDC. All my meds stopped suddenly, but I had no idea why until 2017. A new life of hell began. I didn’t leave the house and was mostly bedbound, only getting up to let my very worried little dog outside, or for a trip to the bathroom or kitchen. Showers? What was that? Just going to the bathroom completely drained me. Thank heaven for adult wash cloths.

I discovered online shopping, thankfully, so we survived. I had no family where I now lived and felt frightened and frustrated. It was like my world had ended. I no longer trusted any doctor or nurse, because most were condescending and uncaring, which really saddened me. I gave up an excellent career in aerospace to go into a profession to care for others, nursing. What happened to those people?

In 2018, I returned to pain management and was placed initially on low dose Norco.  By then my pain was out of control and I knew this would be a new era when it came to pain management. I also knew I was very lucky to have found a provider who would prescribe any opioid. My dose was slowly titrated up, although it was still only a third of what it used to be. I also became a palliative care patient.

I have learned to make my medications work for me, using less on tolerable days and more on bad days, ever cautious about running out early.  I learned, or rather adapted, to finding new ways to do my yard and housework. The last five years I decorated for Christmas like I never used to and began inviting friends over for holiday meals. I became active in my homeowner’s association and was elected vice president. It’s a large senior community with over 1,000 homes.

Have I paid the price for my new endeavors? You bet, big time, for several days at a time. But I did not give in to the pain.

I had a wonderful holiday thanks to sweet friends, and had two pain friends over on New Year’s Day for black eyed peas. One brought her husband. The other recently lost her husband, so she brought her son.

What’s the point of my 30-year story? To share that life does not have to end due to unrelenting pain. Yes, we have to fight far too many battles and no one should be suffering like we do. I decided not to let my nightmare consume me and refused to let it destroy what life I have left.

I am now 76. At this moment my left foot and leg are throbbing, and my whole spine feels electrified. Pain management ordered a full spine MRI to rule out arachnoiditis and the myriad of other problems already diagnosed. My left hand and arm feel like they’re on fire, but I know that when I finish this column, it’ll be time for my meds and some relief.

I want all my pain friends to stand up to your pain even when you feel you are at your wits end. Resurrect the fighter in you. Call a friend or have one over for tea or hot chocolate with this cold winter. You can do it! Tell your pain where to go, please, for you!

Rochelle Odell lives in California.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

Mexican Pharmacies Sell Counterfeit Drugs to U.S. Tourists

By Pat Anson, PNN Editor

With opioid pain medication increasingly harder to obtain in the United States, a growing number of Americans are heading south of the border to get painkillers and other prescription drugs in Mexico.  That’s a risky activity, according to UCLA researchers, who found it was fairly common for Mexican pharmacies to sell counterfeit medication to unsuspecting tourists.

The researchers visited 40 pharmacies in Northern Mexico and purchased samples of oxycodone, hydrocodone, Xanax and Adderall, most of which were obtained without a prescription. Immunoassay testing strips were then used to check each pill for the presence of fentanyls, benzodiazepines, amphetamines and methamphetamines.

Eleven of the 40 pharmacies were found to be selling counterfeit drugs. Of the 27 “oxycodone” tablets purchased, 11 were made with either illicit fentanyl or heroin. One pill sold as “Vicodin” only contained lactose and the weaker opioid tramadol.

Nine of the 11 “Adderall” pills contained methamphetamine, while none of the Xanax pills were found to be counterfeit.  

The study findings were first reported online in medRxiv, a website that publishes new medical research before it is peer-reviewed.

FAKE OXYCODONE PILLS

“It is not possible to distinguish counterfeit medications based on appearance, because authentic and counterfeit versions are often sold in close geographic proximity and are visually and otherwise indistinguishable from one another. Nevertheless, US tourists may be more trusting of controlled substances purchased directly from pharmacies,” the UCLA researchers said, noting that overdoses are poorly monitored in Mexico, making it difficult to know how many people have died from taking counterfeit pills.

Researchers say the growing trade in counterfeit drugs – both north and south of the border – is due in part to a decade-long crackdown on prescription opioids. Since 2010, opioid prescriptions in the U.S. have fallen by nearly 50 percent.

“These decreases have been shown to have affected many patients with known painful chronic conditions, including terminal cancer, and other palliative care patients. Many patients have been rapidly tapered off opioid regimens, which has been associated with increased rates of suicide and drug overdose. A large unmet demand for diverted and legitimate prescription opioids has led to widespread consumption of counterfeit opioids in the US by witting and unwitting consumers,” researchers said.

One such case involves Jessica Fujimaki, a 42-year-old intractable pain patient, who lost access to opioids after the DEA suspended her doctor’s license to prescribe controlled substances last November. Desperate for relief and going into withdrawal, Fujimaki and her husband made two trips to Mexico from their home in Arizona to buy opioids, but were uncertain of the quality of drugs they purchased. She died in December.   

‘These Are Really Strong!’

Perhaps the most widely available counterfeit drug is “Mexican Oxy” – small blue pills that are designed to look like 30mg oxycodone pills. One of the UCLA researchers asked for oxycodone when he visited a Mexican pharmacy:

“We head into the pharmacy and ask for Oxy. The pharmacy employee flashes us a smile and says ‘I have Mexican Oxy or I have American Oxy. American Oxy is 35$ for 20mg, and Mexican Oxy is 20$ for 30mg.’

‘Why is the Mexican Oxy stronger and cheaper?’ I ask.

‘Oh the Mexican oxy is very strong, but it’s cheaper because they give it to us for cheaper,’ he says. ‘You should only take half, and even that’s going to be a lot. The full one might be too dangerous.’

I say, ‘Okay, we’ll take the Mexican Oxy.’ He goes under the counter and pulls out a cardboard box full of syringes. He reaches underneath the needles, and pulls up this false bottom on the box, and the bottom is full of these little blue pills, just loose in the box.

He takes one out of the pile and puts it in a little plastic bag for us. As he hands it to me. He’s says, ‘Okay guys, these are really strong! Please be careful.’”

When that “Mexican Oxy” pill was analyzed later, it tested positive for fentanyl.  

Two reporters for the Los Angeles Times recently found how easy it is to get counterfeit medication in Mexico when they visited pharmacies in Tijuana, Cabo San Lucas and several other northwestern cities. The reporters found that 71% of the 17 pills they purchased were fake. The “oxycodone” and “hydrocodone” pills tested positive for fentanyl, while pills sold as “Adderall” tested positive for methamphetamine.

Asked to comment on the Times investigation, the U.S. State Department, DEA and the White House Office of National Drug Control Policy failed to respond to repeated inquiries. Local and national government agencies in Mexico also ignored requests for comment.

Most of the drug experts interviewed by the Times said they’d never before heard of pharmacies selling counterfeit pills.

“I haven’t seen anything like that,” said Cecilia Farfán-Mendez, a researcher at UC San Diego’s Center of U.S.-Mexican Studies. “I think it speaks to the lack of law enforcement monitoring what’s happening in the pharmacies.”

Most Antidepressants Ineffective for Chronic Pain

By Pat Anson, PNN Editor

Most of the antidepressant drugs that are prescribed for chronic pain are either ineffective or the evidence supporting their use as pain relievers is weak, according to a new analysis published in The British Medical Journal (BMJ).

The use of antidepressants such as duloxetine (Cymbalta) and fluoxetine (Prozac) has doubled in recent years, with much of the increase due to their off-label prescribing to treat conditions such as fibromyalgia, neuropathy and back pain.

But in a review of 26 studies on the analgesic effects of antidepressants, Australian researchers found little evidence to support their use in pain management. The data on side effects was also weak, meaning the safety of antidepressants was also uncertain. Nearly half of the studies had ties or funding from the pharmaceutical industry.

“Recommending a list of antidepressants without careful consideration of the evidence for each of those antidepressants for different pain conditions may mislead clinicians and patients into thinking that all antidepressants have the same effectiveness for pain conditions. We showed that is not the case,” said lead author Giovanni Ferreira, PhD, from The Institute for Musculoskeletal Health at the University of Sydney.

“Some antidepressants were efficacious for some pain conditions; however, efficacy appears to depend on the condition and class of antidepressant. The findings suggest that a more nuanced approach is needed when prescribing antidepressants for pain.”

Ferreira and his colleagues say no study provided high quality evidence on the effectiveness of antidepressants for any pain condition. 

But they did find moderate quality evidence supporting the use of serotonin-norepinephrine reuptake inhibitors (SNRIs) for back pain, postoperative pain, fibromyalgia and neuropathic pain. Low-quality evidence suggested that SNRIs could be used for pain linked to breast cancer treatment, depression, knee osteoarthritis, and pain related to other underlying conditions.

The researchers say only low-quality evidence supports the use of selective serotonin reuptake inhibitors (SSRIs) for depression and pain related to other conditions; and tricyclic antidepressants (TCAs) as a treatment for irritable bowel syndrome, neuropathic pain, and chronic tension-type headaches. 

Antidepressants ‘Disappointing’ for Most Pain Patients

An accompanying editorial, also published in The BMJ, said the study adds to growing evidence that many medications prescribed for pain – not just antidepressants – are only modestly effective.

“Their findings suggest that for most adults living with chronic pain, antidepressant treatment will be disappointing. This is important given emerging concerns about increases in the prescribing of antidepressants and the challenges patients describe when trying to withdraw from treatment,” wrote Cathy Stannard, MD, UK National Health Service, and Colin Wilkinson, a pain patient and consultant at Centre for Pain Research, University of Bath.

“Clinicians continue to prescribe medicines for which the evidence is poor because they observe that some people respond to them, albeit modestly. But all medicines carry risk of harm and there are other, less potentially harmful options more likely to help people to live well with pain.”

Stannard and Wilkinson said exercise and physical activity might be better options than medication for some patients.

Ironically, a little over a year ago, the UK’s National Institute for Health and Care Excellence (NICE) released new guidelines that recommend antidepressants for adults with chronic primary pain, even when they are not depressed. NICE said antidepressants may help with quality of life, pain, sleep and psychological distress.

The NICE guideline is at odds with other studies that found antidepressants are minimally effective for back pain and osteoarthritis and often have adverse side effects. A common complaint of patients who take Cymbalta, for example, is how quickly they became dependent on the drug and have severe withdrawal symptoms when they stop taking it.

Medical Cannabis Reduced Opioid Use in High Dose Patients

By Pat Anson, PNN Editor

In recent years, there have been several studies and surveys – most of them anecdotal -- suggesting that cannabis reduces the need for opioid pain medication. A large new study takes that research a step further, finding direct evidence that chronic pain patients, including those on high doses, significantly reduced their opioid use once they started using medical cannabis.

Researchers with the New York State Department of Health and University of Albany School of Public Health followed over 8,100 patients on long-term opioid therapy (LOT) after they began using medical cannabis. All of the patients had been on opioids for at least 120 days, including some on relatively high daily doses of 90 or more morphine milligram equivalents (MME).

Researchers found that average daily doses declined significantly over time, especially for patients on high opioid doses. After eight months of using medical cannabis (MC), patients taking over 90 MME saw their daily doses fall by nearly 70 percent, compared to a 29% reduction in those getting 50 to 90 MME and a 15% reduction in those on 50 MME or less.

“This cohort study found that receiving MC for longer was associated with opioid dosage reductions. The reductions were larger among individuals who were prescribed higher dosages of opioids at baseline. These findings contribute robust evidence for clinicians regarding the potential benefits of MC in reducing the opioid burden for patients receiving LOT and possibly reduce their risk for overdose,” researchers reported in JAMA Network Open.

The study has some weaknesses. Researchers did not track the pain levels of patients or the types of pain conditions they suffered from. Also unknown is the dose or types of cannabis products they consumed.   

Although the study was conducted at a time when patients nationwide were losing access to opioids or having their doses reduced, researchers say it is “highly unlikely” that impacted their findings because the dosage decline for their patients didn’t begin until they started consuming cannabis.  

Marijuana advocates cheered the study findings.  

“The relationship between cannabis and opioid use is among of the best-documented aspects of marijuana policy,” Paul Armentano, Deputy Director of NORML, said in a statement. “In short, the science demonstrates that marijuana is a relatively safe and effective pain reliever — and that patients with legal access to it consistently reduce their use of prescription opioid medications.” 

A similar study of over 500 chronic pain patients being treated at medical cannabis clinics found a significant decline in their pain levels. And 85% of patients reported they either reduced or stopped using opioids.

Learning How to Cope With Childhood Trauma

By Cynthia Toussaint, PNN Columnist

My world became unreal and terrifying when I was 18. Literally, everything looked, sounded and felt distorted. While I’ve long known this experience is called “derealization,” I only recently discovered it’s a form of dissociative coping that sprung from childhood trauma – trauma that also seeded a lifetime of chronic pain, including my Complex Regional Pain Syndrome.

During my trauma-release work last year, I learned that dissociation protects us from experiencing what is too overwhelming: perceived annihilation, if you will. My childhood years were so traumatizing, I now see that my mind made everything unreal to escape the horror of my world, which included domestic violence, mental illness, addiction and suicide.

There are five different forms of dissociation (depersonalization, derealization, amnesia, identity confusion and identity alteration), and my trauma therapist explained that, unfortunately, derealization is the least common variety, with scant research behind it. Also, it’s near-impossible to manage.

When my reality imploded a lifetime ago, my derealization felt anything but protective. It invaded me so dark and destructively, I feared I’d gone insane and that my next stop was an asylum.

It all started by eating too many pot-filled brownies while I was on an anxiety-ridden outing with my abusive brother and his posse. To get home, I was named designated driver because I’d partaken less than the others. I was terrified because I felt like I was on a bad trip. Also, I’m awful with directions and knew my brother would mercilessly belittle me for my wrong turns.               

Still, I took the wheel. Soon, out of nowhere, or so it seemed, I blew through a stoplight and missed a speeding Mack truck by a hair, my spatial abilities incapacitated. There must have been an angel on my shoulder that day as we all should have died. In a way, I did.

After being relieved of my driving duties, the people around me, the cars outside, even my own body became terrifyingly unreal and distorted, like being in a funhouse hall of mirrors. I also had such severe paranoia that when my brother’s girlfriend took a turnoff I wasn’t familiar with, I was certain she was driving me to hell. And when I say hell, I mean fire, brimstone and the guy with the pitchfork and tail.  

The horror didn’t let up for the next couple of weeks as I felt I was looking through a veil of fog. Perhaps the freakiest part was that everyone acted as though they weren’t on the same drug trip. I felt alone, always holding the tears and screams inside. I tried to play along with everyone else’s normal, reminding myself that if I let out my terror, they’d likely have me committed.

Panic Attack

Soon after, when my family took a long-anticipated trip to New York City, I lost my marbles. It was too much of a load of sensory input that I was unable to process in my vulnerable state. One night in our hotel room, I released my panic with a gut-wrenching scream that didn’t let up for hours. Horrified, my family got me to an ER, and I was diagnosed with an anxiety attack. I only wish.

After that, my derealization became my new normal. Good god, it didn’t let up for an entire year. During college and my first professional dancing job, I learned to cope by using distraction and reminding myself that the bad times were temporary, that some days were better than others.

After developing CRPS and seeing my life and dreams crumble a few years later, I had to give in to the spreading, fiery pain by moving back into my mother’s home. Anxiety, fear and despondency took over and my derealization roared back worse than ever. I was debilitated to the point that I could only lie on a bed and stare at cracks in the wall. It was a single crack that looked real to me.

Out of desperation, I saw a compassionate psychiatrist who mercifully blew open my world. I was stunned as he asked questions that lead me to understand that, not only did he believe me to be sane, he actually knew what plagued me. Stunned, I asked him if my symptoms were familiar.

“Let’s just say that if I had a nickel for every patient that came to me with what you’ve got, I could buy something expensive,” he told me. With that, a ton of weight lifted from my shoulders.

This healer put me on a benzodiazepine, Klonopin, and gave me a book that detailed my dissociative disorder. I was no longer alone and, at last, knew I was sane. Regarding the Klonopin, the good doctor added, “I wouldn’t be surprised if your pain lets up as well.” 

Within a few days, my derealization miraculously eased by about 80% and, as a bonus, I went into my first CRPS remission. The word “hope” re-entered my vocabulary, and I was again among the living.           

44 years after eating that brownie, I still wrangle with derealization. If stressed or triggered, the fog closes in, but it no longer runs me. I’m fortunate the clonazepam (generic for Klonopin) is still effective, as I have a brother who isn’t as lucky. He’s suffered most of his life with derealization, and nothing has ever provided respite.

Trauma brings on so much bad in so many ways, and our minds and bodies go to astounding extremes to persevere. Since my trauma-release work, I’ve arrived at surprising new understandings and feelings. I’ve come to a place of acceptance, even a bit of gratitude, for my derealization. It’s gifted a lifetime of protection by shielding me from what I likely wouldn’t have survived. It was simply trying to do right by me. Still is.              

For real.           

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 has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

A Pained Life: The Doctor Complex

By Carol Levy, PNN Columnist

The doctor walked into the exam room. He put out his hand and said, “I'm John Smith.”

For some reason, I did something I had never done before and asked, “Do you prefer John or Dr. Smith?”

“Uh, either is okay,” he said, looking a bit befuddled.  

So, I went with “John.” He didn't look happy with my choice, but he accepted it.

Flash forward to another exam room. Another doctor walks in and extends his hand to introduce himself. “I'm George Midas,” he says.

“Do you prefer George or Dr. Midas?” I ask.

He blew out his chest, like a gorilla in the mist. “I went to medical school and I deserve the title of doctor. You may call me Dr. Midas,” he said.

I returned to the first doctor. I never went back to the second one.

I read in medical blogs about how concerned many doctors are because they feel their elite status in the public eye is diminishing. “Doctor” or “physician” is what they are, so that is what they want to be called. Even the sobriquet “provider” is an affront to them. “Provider” makes them sound like nothing more than a businessperson, and that is an insult.

I remember being in the hospital years ago and my neurologist came into my room. He was wearing a sporty pinstriped summer suit. No white coat.

“I like your suit. You look really nice in that,” I said.

“You mean I don't look professional,” was his reply.

No, I didn't mean that. But apparently the white coat makes the man, and the man is more when he is seen as doctor and wears the uniform. Out of it, he becomes just another person doing business with a patient.

It is an odd thing. We don't call lawyers “Attorney Smith” or architects “Architect Michaels.”

You may recall when the Bidens first came into the White House. There was a hue and cry about First Lady Jill Biden calling herself “Dr. Biden” because, after all, she wasn't a medical doctor. She was “merely” a doctor of education.

Yes, it wasn't medical school, but does that mean that her graduate education was “less than” because it was not a medical school?

I hate to tell those who went through the rigors of medical school that doing so was a choice. No one forced them to become a doctor. And going through what may be the hardest of all graduate studies does not make them better than anyone else.

I will gladly call you “doctor” if that is the only option you give me. But don't confuse the use of your title with me being less elite than you are. Because that is one thing I am not.

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.

Yoga Can Help Manage Chronic Illness, Including Pain

By Herpreet Thind, University of Massachusetts Lowell

The popularity of yoga has grown tremendously in the past decade. More than 10% of U.S. adults have practiced yoga at some point in their lives. Yoga practitioners spend on average US$90 a month, and the yoga industry is worth more than $80 billion worldwide.

Yoga is now a mainstream activity in the U.S. and is commonly portrayed as a healthy lifestyle choice. I am a behavioral scientist who researches how physical activity – and specifically yoga – can prevent and help manage chronic diseases.

Many people attribute improvements in their physical and mental health to their yoga practice. But until recently, research had been sparse on the health benefits of yoga. As the body of rigorous research on yoga grows, more and more work is showing the many health benefits of a yoga practice. 

‘Stilling the Mind’

The name “yoga” is derived from the Sanskrit word “Yuj” meaning to unite, join or connect the mind, body and soul. The first text on yoga was written by the sage Patanjali over 2,000 years ago in India. Patanjali described yoga as “citta-vrtti-nirodhah,” or “stilling the mind.” This was achieved through a mix of breath work, meditation, physical movement and body purification practices, as well as ethical and moral codes for living a healthy and purposeful life.

Over the years, various yoga teachers have modified the original Patanjali yoga, resulting in different styles that vary in their intensity and focus. For example, some yoga styles such as Vinyasa focus more on intense movements similar to an aerobic workout. Restorative yoga includes more relaxation poses. Iyengar yoga uses props and emphasizes precision and proper alignment of body. These different styles provide options for individuals with different physical abilities.

Generally speaking, yoga instructors in the U.S. today teach styles that incorporate postures, breathing exercises and sometimes meditation.

Physical and Mental Health Benefits 

As yoga has grown in popularity in recent years, researchers have begun to study its effects and are finding that it has great benefit for mental and physical health.

Yoga involves physical movement, so it is no surprise that most types of yoga can help to improve a person’s strength and flexibility. In one study with healthy untrained volunteers, researchers found that eight weeks of yoga improved muscular strength at the elbow and knee by 10%-30%. Flexibility at the ankle, shoulder and hip joints also increased by 13%-188%.

There are a number of less obvious but meaningful benefits from yoga as well. Research has shown that yoga practice can reduce risk factors for heart disease such as high blood pressure, high cholesterol and abdominal obesity. Studies on older adults have shown significant improvements in balance, mobility, cognitive function and overall quality of life.

Yoga seems to be effective at managing pain, too. Research has found that yoga can improve symptoms of headaches, osteoarthritis, neck pain and low-back pain. In fact, the American College of Physicians recommends yoga as one of the options for initial nonpharmaceutical treatment for chronic low-back pain.

Yoga also provides many benefits for mental health. Researchers have found that a regular practice over eight to 12 weeks can lead to moderate reductions in anxiety and depressive symptoms as well as help with stress management.

Exercise With Mindfulness

Yoga is a type of exercise in that it is a form of physical exertion that helps build fitness. A lot of the benefits researchers have found are due to the physical activity component and are similar to benefits from other forms of exercise like running, weightlifting or calisthenics.

But unlike these other activities, yoga practice incorporates mindfulness as a key aspect. With its focus on controlling breath, holding postures and meditation, yoga increases how much a person pays attention to the sensations of their body and the present moment. This mindfulness leads to many benefits not found from other forms of exercise.

Studies have shown that mindfulness training on its own can increase a person’s self-awareness, along with the ability to recognize and skillfully respond to emotional stress. It can even give a person greater control over long-term behavior. One study found that increased mindfulness from yoga can help people better recognize and respond to feelings of being full when eating, decrease binge eating and alleviate concerns over how their body looks.

My colleagues and I observed a similar effect in a pilot study on the benefits of yoga for individuals with Type 2 diabetes. After doing yoga twice a week for three months, several participants reported paying more attention to their diet, snacking less and eating healthier, even without any nutrition intervention. Our patients also reported less stress and an increased willingness to engage in other types of physical activities.

Yoga is clearly different from Western exercise in how it approaches mental health. With more research, it may be possible to understand the biological mechanisms as well.

Before You Start

Yoga may not be helpful for all medical conditions or right for every person, but people of all age groups, body types and physical abilities can practice yoga. It can be a form of mental and physical exercise for people who do not enjoy sweating during strenuous forms of exercise or for individuals with medical or physical conditions who find working out in the gym challenging.

It is important to consider that although yoga is generally safe, just as with any other form of exercise, there is some risk of getting injured. Individuals with medical conditions who are new to yoga should practice it initially under the supervision of a trained instructor.

If you do decide to give yoga a try, talk to the yoga instructor first to assess whether the style they offer meets your preference and fitness levels. Remember, you may need to practice a couple of weeks to feel the benefits, physically and mentally.

Herpreet Thind, PhD, is an Associate Professor of Public Health at University of Massachusetts Lowell. Her research interests include physical activity and yoga interventions for chronic disease prevention and control. She has received funding from the National Institutes of Health to examine the feasibility of yoga for adults with type 2 diabetes.

This article originally appeared in The Conversation and is republished with permission.

Most Americans Losing Sleep Due to Pain

By Pat Anson, PNN Editor

Does pain keep you awake at night? A new survey found that a surprising number of Americans are unable to get a full night’s sleep because of “painsomnia.”

Almost 98% of U.S. adults surveyed by the Sleep Foundation say they experience pain at least one night a week. About 85% said pain costs them at least two hours of sleep each night, with the average respondent losing six hours of sleep per week.  

Back pain was the most common reason for painsomnia (56%), followed by neck pain (41%), head pain (32%) and knee pain (29%).

“Pain does not have to be extreme to keep us awake,” says Alex Dimitriu, MD, founder of Menlo Park Psychiatry and Sleep Medicine, and a member of the Sleep Foundation's medical-review board. “Even milder forms of pain can result in varying degrees of insomnia, resulting in trouble falling or staying asleep.”

Adults who live with pain average just 6.7 hours of sleep per night, below the recommended 7 to 9 hours. A recent meta-analysis of 31 studies found that sleep loss increases our perception of pain and creates a vicious cycle. Poor sleep leads to more pain and vice versa.

“When you can’t sleep well due to pain, this leads to more pain,” said Medhat Mikhael, MD, a pain management specialist and medical director of the Spine Health Center at Orange Coast Medical Center in Fountain Valley, CA. “You also become anxious about not sleeping enough, so you don’t sleep. Then you’re fatigued, so you feel a lot more pain.”

When asked to rate their pain on a zero to ten scale, 73% of respondents with chronic pain said their nightly pain was at level 5 or higher. Over half (57%) said they wake up at least three times during the night, and 41% say they wake up earlier than they’d like.  Experts say fitful sleeping is less restorative and heightens pain sensitivity.

“Sleep is as much about quality as it is about quantity,” Dimitriu says. “Falling asleep too late can push circadian rhythms into a delayed sleep-phase cycle. And waking too early can result in an advanced sleep phase cycle, where you get tired too early in the evening.”

What are people doing about their poor sleep? Over half of respondents (56%) who lose sleep to pain have taken sleep aids in the past month. Melatonin was the most popular (49%), followed by Benadryl (diphenhydramine) (23%).

A surprising number said connecting with others in pain support groups helps them sleep. Although only 1 in 5 pain sufferers say they’ve participated in support groups, 91% of those who did say interacting with other painsomniacs helped them learn how to better manage, understand or improve their sleep.

This Sleep Foundation survey was conducted online in June, 2022. Results are from 1,250 participants aged 18 and older who lived in the United States.

DEA Lifts Limits on Buprenorphine Use

By Pat Anson, PNN Editor

After years of strict limits on the number of patients that a provider can treat with buprenorphine, it’s suddenly a lot easier to prescribe the drug for opioid use disorder (OUD). The Drug Enforcement Administration has eliminated the “X-Waiver” program for buprenorphine, a move required by Congress under the 2023 Appropriations Act.  

Elimination of the X-Waiver removes all patient caps and significantly increases the number of providers that can treat OUD with buprenorphine, a long-acting opioid similar to methadone. When combined with naloxone, an overdose prevention drug, buprenorphine reduces opioid cravings and eases withdrawal. Prescriptions for Suboxone and other buprenorphine/naloxone combinations now only require a provider to get a standard DEA registration for controlled substances.

“DEA fully supports this significant policy reform. ln this moment, when the United States is suffering tens of thousands of opioid-related drug poisoning deaths every year, the DEA 's top priority is doing everything in our power to save lives. Medication for opioid use disorder helps those who are fighting to overcome opioid use disorder by sustaining recovery and preventing overdoses,” DEA Administrator Anne Milgram wrote in a January 12 letter to providers.

The DEA is also developing a new mandatory eight-hour training program for providers to help them identify and treat OUD when they apply for or renew their registrations. The new training will be required on June 21.

“I think this is overdue. Buprenorphine can reduce the risks of overdose by 60% and is much safer than methadone,” says Lynn Webster, MD, an expert in pain management who is a Senior Fellow at the Center for U.S. Policy. “It would be controversial, but I believe low-dose buprenorphine should be OTC as a harm reduction measure. At least there should be a discussion about the potential benefit vs risk.”

Pressure to Prescribe

It remains to be seen how the elimination of the X-Waiver will affect pain patients. Over the years, we’ve heard complaints from patients who say they were coerced by their doctors into taking Suboxone, even though it’s not approved as a treatment for pain. With patient caps removed and more doctors able to prescribe buprenorphine, there could be added pressure on pain patients to take Suboxone – whether they show signs of OUD or not.

“I understand the pressure to use buprenorphine for pain rather than traditional opioids. It is a much safer opioid than most, so it should be considered as a first line therapy,” says Webster. “However, that is the rub. It is not effective or tolerated in many patients.  Patients have a legitimate concern that they may be coerced to transition to buprenorphine when their existing medications are working and there are no signs of abuse.     

“I don't think the change in regulations will mean more doctors will push their patients to use buprenorphine, because the mind-set is already there.” 

A little-known aspect of buprenorphine is that it blocks other opioids from working – meaning anyone who is taking it should be aware that if they have acute pain from an accident, trauma or surgery, they’ll have to rely on non-opioid pain relievers.  

While often touted as the most effective medication for OUD, most people who take buprenorphine relapse and starting taking opioids again. About two-thirds of the patients who receive Suboxone stop filling prescriptions for it after just three months. 

Although it’s difficult to get high on buprenorphine, it can still be misused. A 2021 study found the misuse rate for buprenorphine was over two times higher than misuse rates for hydrocodone, oxycodone and other opioid pain medications.

Widely Used Red Food Dye Linked to IBD

By Pat Anson, PNN Editor

Allura Red is one of the most widely used artificial food dyes in the world. Also known as “Red Dye 40,” the dark red coloring is added to sodas, candies, breakfast cereals, condiments and dozens of other food products to make them more appetizing.

Over the years, Allura Red has been linked to a variety of different health conditions, including attention deficit hyperactivity disorder (ADHD) in children. Now there is emerging evidence that Allura Red may also trigger inflammatory bowel diseases (IBDs) such as Crohn’s and ulcerative colitis.

Researchers at McMaster University in Ontario, Canada exposed laboratory mice to Allura Red for 12 weeks — at about the same levels humans might consume — and found that it caused chronic inflammation in their gastrointestinal tracts and raised levels of serotonin, a hormone that affects mood and digestion.

“This study demonstrates significant harmful effects of Allura Red on gut health and identifies gut serotonin as a critical factor mediating these effects. These findings have important implication in the prevention and management of gut inflammation,” McMaster researcher Waliul Khan, PhD, said in a statement.

“What we have found is striking and alarming, as this common synthetic food dye is a possible dietary trigger for IBDs. This research is a significant advance in alerting the public on the potential harms of food dyes that we consume daily.”

Although Allura Red and eight other synthetic food dyes – all derived from petroleum -- are considered “safe for the general population” by the FDA, there have been relatively few studies of their effect on human health. Some experts believe the dyes disrupt the absorption of key minerals like zinc and iron, causing hyperactivity, allergic reactions and gut inflammation.

STRAWBERRY SODA CONTAINING ALLURA RED DYE

Recent research has helped establish the importance of gut health, and that bacteria can have profound effects – both harmful and beneficial -- on our immune and gastrointestinal systems. A 2022 study, for example, found evidence that a particular strain of bacteria causes abdominal pain, cramps, bloating, gas and diarrhea – symptoms common to IBD. A 2019 study linked gut bacteria to fibromyalgia.

Western diets that have a lot of processed food rich in fat, meat and sugar have also been linked to gut inflammation. Processed foods tend to have a lot of Allura Red and other chemical additives, and Khan believes they warrant further study.

“The literature suggests that the consumption of Allura Red also affects certain allergies, immune disorders and behavioural problems in children, such as attention deficit hyperactivity disorder,” said Khan, a professor of Pathology and Molecular Medicine at McMaster and principal investigator at the Farncombe Family Digestive Health Research Institute.

Khan and his colleagues published their findings in Nature Communications. Their study was funded by the Canadian Institutes of Health Research.

Doctor Convicted of Illegal Opioid Prescribing Imprisoned Before Sentencing

By Pat Anson, PNN Editor

A Louisiana doctor who federal prosecutors labeled as a "drug dealer in a white coat" has been taken into custody, weeks before he was scheduled to be sentenced for improperly prescribing opioid pain medication.

A jury found Randy Lamartiniere guilty last month on 20 counts of illegally distributing controlled substances outside the usual course of a medical practice. The 64-year old doctor was out on bail and scheduled for sentencing on March 30, but prosecutors wanted him taken into custody immediately after his conviction. A judge denied their motion, pending another court hearing on Tuesday, January 17.

“Needless to say this hearing is about as scary as it gets as I may or may not be taken into custody then. Kind of impossible to prepare for being incarcerated for 5-10 years in this situation,” Lamartiniere posted on his Facebook account prior to the hearing.

“There is no justification for pre-sentencing incarceration of course. I have an excellent chance of an appeal and a new trial and am hoping to stay out of prison altogether. Could use some support and kind thoughts at this extremely trying time. I’m more anxious about this than prior to my trial.”

Lamartiniere’s fears were justified, as the judge reversed his previous decision and had him taken into custody. According to Lamartiniere’s sister, he is now in a crowded holding cell with 18 other men, awaiting transfer to another facility.

Dr. Randy Lamartiniere

Lamartiniere faces up to 400 years in prison when he’s sentenced in March – 20 years for each count – but is likely to get less under federal sentencing guidelines. It’s also possible he could be freed on bail again, pending his appeal.

Lamartiniere’s legal troubles date back several years. The Louisiana State Board of Medical Examiners issued an emergency order in 2015 suspending his license to prescribe opioids and other controlled substances. Despite the suspension, Lamartiniere kept writing “medically unnecessary prescriptions,” according to prosecutors, charging patients $100 to $300 per visit and taking payments only in cash. Baton Rouge police arrested him in 2016, but legal delays prevented his trial until last year.

As he awaited trial, Lamartiniere became active in the pain community, giving advice and encouragement to patients unable to find good pain care. Beau Brindley, Lamartiniere’s defense attorney, told jurors during closing arguments that he prescribed drugs in “good faith” to people he believed were in real pain.

“Taking the patient at face value is not a crime,” Brindley said, according to The Advocate. “He was an old-school doctor trying to manage patients in a new age world. … He was trying, and trying makes him not guilty. There is no way to prove that he was not making an honest effort.”

That “honest effort” will form the basis of Lamartiniere’s appeal, which is based in part on a recent U.S. Supreme Court decision in favor of two doctors who were also convicted of overprescribing opioids. Writing for the majority in that case, Justice Stephen Breyer said it was up to prosecutors to prove that doctors “knowingly or intentionally acted in an unauthorized manner" under the Controlled Substance Act.

So far the high court’s decision has had a mixed impact on other doctors in similar situations. Earlier this month, Dr. Lesley Pompy was acquitted by a Michigan jury of charges that he illegally distributed opioids and committed health care fraud. The charges stemmed from an investigation of Pompy that began in 2016.

More recently, the DEA suspended the license of Dr. David Bockoff, a California physician who was treating patients with severe pain conditions who required high-dose opioids. At least three people have died as a result of that suspension. Bockoff is currently appealing the DEA’s suspension.

Emergency Room Visits Soar for Cancer Patients Needing Pain Relief

By Pat Anson, PNN Editor

The number of cancer patients seeking treatment for pain in U.S. emergency departments has doubled in recent years, according to a large new study that further documents the harm caused to patients by misguided efforts to reduce opioid prescribing.

The study, conducted by a team of cancer researchers, looked at health data from 2012 to 2019 for millions of patients who had a cancer diagnosis and were not in remission.  Of the 35 million visits made to an emergency department (ED) by those patients, over half were deemed preventable – meaning the visits could have been avoided if the patient has received proper care earlier.

By a wide margin, pain was the most likely reason for a preventable ED visit. The number of cancer patients who went to an ED for poorly controlled pain rose from nearly 1.2 million in 2012 to 2.4 million in 2019. About a quarter of them had pain so severe they were admitted.  

“Consistent with previous studies, we found that pain was the most common presenting symptom (36.9%) in ED visits among patients with cancer and that the number of patients with cancer who visited an ED because of pain more than doubled over the study period,” lead author Amir Alishahi Tabriz, MD, a research scientist at the Moffitt Cancer Center in Florida, reported in JAMA Network Open.

“A possible explanation could be the unintended consequences of the efforts within the past decade to decrease overall opioid administration in response to the opioid epidemic.”

“I am not at all surprised by their result, as they are consistent with what I’m hearing from colleagues across the U.S.,” says Chad Kollas, MD, a palliative care physician and longtime critic of the 2016 CDC opioid guideline, which discouraged the prescribing of opioids for pain.

The CDC guideline was only intended for primary care physicians treating non-cancer pain, but it was quickly adopted throughout the U.S. healthcare system, including the field of oncology. Previous studies have documented how opioid prescriptions and doses declined for cancer patients, with the Cancer Action Network warning in 2019 that there has been “a significant increase in cancer patients and survivors being unable to access their opioid prescriptions.”

One of the most egregious cases involved April Doyle, a California woman with Stage 4 terminal breast cancer.  In 2019, Doyle posted a tearful video online after a pharmacist refused to fill her opioid prescription. She died about a year later, after the cancer metastasized into her lungs, spine and hip. 

“Unfortunately, the systematic misapplication of the 2016 Guideline created harms for patients due to reduced access to pain care and increased risk of suicide after nonconsensual or excessively rapid opioid tapers. These harms are predictable features of policy changes based on misguided calls for unfocused reductions in opioid prescribing,” Kollas told PNN.

Even if a cancer patient goes to an emergency room for pain relief, the odds of them — or any other patient — getting an opioid is dwindling. A new study by the National Center for Health Statistics found that the percentage of ED visits that ended with an opioid prescribed at discharge fell from 21.5% in 2010 to just 8.1% in 2020.

‘I Blame the CDC’

After years of complaints and bureaucratic delays, the CDC finally revised its opioid guideline in 2022 to more explicitly exclude patients undergoing cancer treatment, palliative care and end-of-life care. But many cancer patients felt it was too little, too late.

“My Mother had stage 4 terminal lung cancer. She was in horrible bone pain and her cancer doctor told her to take Tylenol for pain. We made several trips to the ER in the middle of the night just to manage her pain,” one woman told us. “She could not even enjoy her last moments on this earth with her family because of horrible cancer pain. As it spread all over, I could not help her. I am a nurse who watched her die miserably and I blame the CDC.”

“I live with stage 4 cancer and can't get any pain medication. I can't get any doctors to help me treat my pain,” another nurse told PNN. “My experience helps me understand why people become suicidal because they can't live with the pain anymore.”

“Stop making doctors afraid to treat pain adequately! I need a higher strength opioid for my chronic pain and my doctor will not up my strength because of that fear,” said another patient. “My husband has Stage 4 cancer and they refuse to up his strength as well. This is a crime against humanity!”

“Over the past decade, there has been a seismic shift in prescribing practices and sharp declines in access to these medications for patients with cancer.”

— Dr. Andrea Enzinger, Harvard Medical School

In another large study that looked at racial and ethnic disparities in the treatment of Medicare patients with advanced cancer, researchers saw a steady decline in opioid prescriptions and a rapid expansion in urine drug testing from 2007 to 2019. Their findings, published in the Journal of Clinical Oncology, show that less than a third of late-stage cancer patients received an opioid for pain control in 2019 and only 9.4% received a long-acting opioid near the end of life.

Black and Hispanic cancer patients were less likely to receive opioids than their White counterparts. They were also more likely to get smaller doses than White patients.

"Over the past decade, there has been a seismic shift in prescribing practices and sharp declines in access to these medications for patients with cancer,” said lead author Andrea Enzinger, MD, a gastrointestinal oncologist and assistant professor at Harvard Medical School. “Our findings are startling because everyone should agree that cancer patients should have equal access to pain relief at the end of life."

Stress Can Cause Epstein Barr Virus to Reactivate

By Dr. Forest Tennant, PNN Columnist

More than one medical professional and a lot of persons with adhesive arachnoiditis (AA) have asked why we have been studying the Epstein Barr Virus (EBV) and its relationship to AA.  After all, almost everyone over age 25 will show EBV antibodies on a blood test. 

Our on-going studies of persons with AA continue to show that essentially all have elevated EBV antibody levels. In addition, AA almost always follows a cascade of conditions known to be associated with autoimmunity. These include fibromyalgia, chronic fatigue syndrome, neuropathies, burning feet or mouth, irritable bowel, Tarlov cyst, thyroiditis, spinal fluid leaks and deteriorated bulging discs. This cascade also appears common in persons with Ehlers-Danlos type syndromes.

Two recent comprehensive reviews on EBV support the findings in our studies. One is “Epstein Barr Virus and Neurological Diseases” by Nan Zhang, et al, and the other is “Epstein Barr Virus (EBV) Reactivation and Therapeutic Inhibitors” by Jonathan Kerr.

Both reports state that EBV infection occurs in 95% or more of people, as the human lymphocyte is its natural, lifelong habitat. Lymphocytes are white blood cells that help our immune systems fight cancer, viruses and bacteria. EBV infections are spread by saliva or other body secretions, and the initial infection usually occurs before age 25, causing a cold, sinusitis, bronchitis or infectious mononucleosis.

Once the initial infection subsides, the virus imbeds itself in lymphocytes and remain there for life. As a result, virtually all humans carry low levels of EBV antibodies. Adults with AA don’t always show a positive test for the initial EBV infection, but they do show high levels of antibodies -- meaning they carry EBV in their lymphocytes that can multiply, reproduce and reactivate at any time.

Kerr reviewed research on medicinal agents that may inhibit this reactivation, which most likely occurs during periods of stress. Our standard 3-component medical protocol contains some of the agents that Kerr believes may be effective in suppressing reactivation. These agents include acyclovir, cimetidine, vitamins A, C, and D, resveratrol, luteolin, apigenin, curcumin, astragalus, L-arginine, delta-9-tetrahydrocannabinol, and green tea.

EBV-infected lymphocytes can cross the blood brain barrier to produce neuroinflammation and tissue deterioration. EBV produces antibodies that contain biologic elements that can produce on-going autoimmune and neurological diseases. The Zhang report states that high levels of EBV antibodies “can be biologic markers that assess the risk of developing” neurologic diseases.

On-going EBV autoimmunity is indicated by high antibody levels. Reactivation of EBV may accelerate inflammation and tissue deterioration. Our longstanding 3-component medical protocol seems to help suppress both the on-going autoimmunity and the reactivation of EBV.

EBV remains harmless and dormant unless our natural resistance becomes deficient, either due to a genetic disease such as Ehlers-Danlos Syndrome or a stressful event that lowers cortisol and raises adrenalin, such as trauma, infection and psychological issues. Medical procedures such as epidural injections, spinal taps, and surgery are stressful and may also reactivate EBV. All persons with AA should determine their EBV autoimmune status.

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 bulletins recently issued by the Tennant Foundations’s 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.  

The Healthcare System Is Sick, How Could It Ever Heal Us?

By Mia Maysack, PNN Columnist

As a person who has required ample medical attention throughout my life, a constant part of the never-ending struggle for treatment is finding a provider that’s worth-a-damn to administer quality healthcare.

In childhood, I was fortunate to have one practitioner who treated every member of my family. Although most of it was an excruciating trial and error process, I can at least say they tried. When she retired, for continuity’s sake I gravitated toward someone else in the same medical practice.

By then my initial condition (chronic head pain) had not only become more complicated, but I was also battling another diagnosis (fibromyalgia) -- one that the new provider did not seem to take seriously. I chose to dismiss myself from the practice.

At that point, I became more conscious about the sort of doctor I was seeking, so I spent hours researching every clinic in my surrounding area and reviewing doctors’ bios. It was imperative that whoever I chose possess some sort of background or special interest in pain. 

I found a candidate I was so excited about that I left in happy tears after the first appointment. Unfortunately, that did not last long. On the next visit, I was diagnosed with my second round of Covid-19 and they proceeded to blame my chronic fatigue, joint pain and compromised mobility on the coronavirus -- as opposed to the fibromyalgia I’d already been diagnosed with years before the pandemic.

I shrugged it off as a misunderstanding, and assumed they must have meant the exacerbation of my fibromyalgia symptoms was caused by Covid.  

At appointment number three, we discussed preventative screenings due to some issues relating to potential hereditary concerns. After some urging, they explained the process of going in for testing, assured me I’d be contacted by qualified personnel, and guaranteed that I’d receive a direct message from them personally once all this was set in motion.

My only job was to wait, so I did. And I continued to wait. A month later, I’m still waiting.

Of course, I realize I’m not the only patient in the universe. As a retired healthcare worker, I understand the burnout so many providers must be experiencing after the last 3 years.  I recognize the shortages and feel privileged to have any sort of access. That being said, over the last two months at least two members of the pain community have taken their own lives. This is an example of what led them there. 

I vowed this was going to be the final disappointment that I am willing to accept from the healthcare system. I am paying more for medical insurance than I ever have, but receive the least amount of aid.

Given that previous failures are what led me to explore more holistic methods, I do not reside in woo-woo land. Concepts like breath work and herbs felt a bit degrading and insulting at first, but then I decided to set my reluctance aside, remembering how lost just about everything I tried up to then had left me. I reflected on the fact that I almost didn’t survive long enough to even consider something different. 

I’d never suggest that natural treatments will cure whatever horrendous illness a person may be enduring, but I’ll point out that many holistic remedies go back thousands of years. Ideas that were once dismissed, such as gut health being correlated to mental well-being; inflammation being the main culprit in overall sickness; oral hygiene (or lack thereof) directly impacting the heart; and how exercise improves mood and health are now widely accepted as mainstream.

Some of these ideas have gained traction, but utilizing things like plants won’t ever be fully encouraged or supported because it takes money away from Big Pharma – which ironically produces medication that is often derived from natural sources as well.

All of this is an open invitation to explore different ways to care for ourselves. We can remain distraught over our lack of support or we can be empowered by seeking out what we can do, as opposed to what they’ll “allow.”

I don't know about you, but continuing to put the quality of my life in the hands of those who repeatedly demonstrate their lack of concern and who are in the business of profiting off sickness is a death wish. The healthcare system is not only guilty of this, but sick itself. How could it ever heal us?

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She 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. 

The Real Hoax About Prescription Opioids

By Barby Ingle, PNN Columnist

How many have to die? How many have to be denied? How many have to suffer unnecessarily?

Those are some of the questions I’m asking after reading a recent article in The Guardian about the CDC’s revised opioid guideline. The article has a few misstatements about prescription opioids that I have issues with. 

Before I share my take, I want readers to know that I do not take opioid medications myself. I have taken them in the past, but found other treatments that were more effective, so I stopped taking opioids in 2009. I also have an allergy to OxyContin, which I discovered after a knee surgery.

In 2018, I underwent pharmacogenomic testing, which I highly recommend for anyone who has chronic physical conditions. It has given me the best precision care available. I still live with multiple chronic pain and rare diseases, and will need treatment for the rest of my life.

You may be aware that I recently stepped down as president and a board member of the International Pain Foundation (iPain). It was a completely volunteer position. I have been advocating through many nonprofits since 2006 and have always been transparent about any funding that the charity or I received. I also have a degree from George Mason University in Psychology.

Which brings me back to the claims about addiction, opioids and patient advocacy that Dr. Andrew Kolodny, president of Physicians for Responsible Opioid Prescribing (PROP), made in The Guardian article. This quote is from Kolodny about patient suicides:

“This is a really serious issue. But what the opioid advocates, many with industry ties, disclosed or undisclosed, pushed was this false narrative about an epidemic of suicide and so there was a manufactured backlash against the CDC guidelines.

“The notion that there are patients losing access to an effective treatment, and therefore they have no choice but to kill themselves because they’re in so much pain now, that’s a hoax. But the idea that someone in the context of acute withdrawal would kill themselves, that certainly could be real because it’s so excruciating.”

From the perspective of a pain patient and a former nonprofit board member, I want to set the record straight about Kolodny’s alleged “hoax.” Yes, addiction is a serious issue. Under-treatment of chronic pain is also a serious issue. Any mistreatment of people with chronic care challenges is an issue.

The healthcare system in the U.S. is working as it was designed and needs to be thrown out. We are all individuals and should be treated by the providers of our choosing to get the care that we need — not as the healthcare system dictates. Not every provider is great, not every patient is great, and no treatment works for everyone. 

In America, we live in a “free” society. I believe we should be able to choose our own care and moral stance. But I wonder why Kolodny believes his moral stance should supersede what a provider and patient feel is best, whether it’s addiction treatment, pain management or any particular choice of care.

We should have full access to whatever we are willing to do to our own bodies. I have said many times over the years that I do not want to be a guinea pig anymore. I work hard to manage my pain levels, my surroundings, my energy pennies, and the people around me.

‘Advocates With Industry Ties’

Kolodny claims that many “opioid advocates” have industry ties and manufactured a false narrative about patient suicides in a backlash against the CDC guideline.

As a patient advocate who has been working with nonprofits for almost 20 years, I believe that the pharmaceutical industry should be giving money to the pain community to help us with tools and resources that make our lives better.

People think it’s easy for advocacy groups to get funding from Pharma, but that is not true, at least for the small funding that I was involved with. I know firsthand the many checks and balances that are needed before any grant money is provided. It did not matter if it was $100 or $10,000. Nonprofits have to account for it on their tax returns and through audits.

Since 2015, grant money from Pharma for iPain completely stopped, even the small amounts that we were getting. We went from completing over 200 grant applications a year, and getting less than 5 percent of them approved, down to a 0% success rate. There is nothing to report when you receive nothing, which is how it is going now for most patient advocacy organizations and support groups.

Receiving nothing from Pharma did not change our opinions or goals. We found other ways to accomplish them on a shoestring budget. I wish it was easier, but being hard does not stop the movement, because it is a matter of life or death in too many cases. Our work at iPain continued, because it was never about spreading whatever Pharma wanted. It was always about helping patients get individualized care. And all options, including opioids, should be on the table.  

Our work continued on a smaller scale and more creatively than if we had a large budget to get things done. At about the same time that our funding dried up, social media took off and it became easier to reach more people and actually be heard. We were still able to accomplish our goals, at less cost and with less funding.

I do not have the time, energy or space in this column to go into the many financial ties — disclosed and undisclosed — that Kolodny and PROP have with law firms involved in opioid litigation, which funded their efforts to take opioids away from patients. Good God, what is the point of him being so moral in his own eyes, that he does not let other people choose what is best for them?  

Patients losing access to treatment is real. So are patients dying or contemplating suicide. I receive emails and calls from them regularly, even since stepping down from iPain.

The first patient I lost due to being cut off from medication was in 2012. She was one of my best friends at the time. I talked to her often. She was on a medication that was helping. The provider cut her off and put her on a different drug. Neither were opioids. She was stable and doing well with the first medication, but not on the second one. My friend decided that jumping out of a 10-story window to her death would be better than not having the medication that was giving her more quality of life.

Kolodny says someone in acute withdrawal might kill themselves because it is so excruciating. Yes, Dr. Kolodny, withdrawal is hard and you are forcing it on people who are already in pain, who did not need or ask for your opinion. That is the real hoax.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts over the years. You can follow her at www.barbyingle.com