‘Don’t Punish Pain’ Rallies Draw Local Media Coverage

By Pat Anson, PNN Editor

Hundreds of people – including some in wheelchairs and others on crutches – took part in a nationwide series of rallies Tuesday protesting the poor treatment of chronic pain patients.

“Don’t Punish Pain” rallies were held in over 80 cities from Anchorage, Alaska to Jacksonville, Florida. The protests were organized on Facebook by a grassroots group of pain patients, including many who have lost access to opioid medication or seen their doses drastically reduced due to federal and state guidelines that target opioid prescribing.   

Rally organizers were disappointed by the low turnout in some cities. Only a handful of people showed up for rallies in Las Vegas and Providence, Rhode Island. But over a hundred patients and their supporters rallied in Oklahoma City. And about two dozen people rallied on the steps of the state capitol in Olympia, Washington.

Due to their small size, the rallies have yet to attract the national media attention that organizers are hoping for.

But they have been successful in drawing local media coverage and getting reporters to tell a side of the “opioid crisis” that’s rarely addressed.

DON’T PUNISH PAIN RALLY IN OLYMPIA, WASHINGTON

“We’re invisible. We’re hidden in our homes and our beds and in our rooms,” Crystal Irwin told CBS4 News at a rally in Denver. “People don’t know what we’re going through.”

Ben Lawrence has lived with chronic pain since an accident in 2009. He told CBS4 he was still able to work until his doctors stopped giving him opioids.

“They make you feel like you’re a drug addict,” Lawrence said. “They don’t give me the medication I need to go to work. I want to go to work.”

Rally organizers in Stuart, Florida told ABC25 News that patients are being unfairly targeted in the opioid crisis when the real problem is illicit drugs.

"They are calling this an opioid crisis when actually it's a fentanyl crisis, and they can't control the drugs coming into the United States. But they can control people like us who get our pain medication to survive," said Michael Courtright.

Patients are calling for major changes in guidelines released by the CDC in 2016, which discourage doctors from prescribing opioids for chronic pain. Although voluntary and only intended for primary care physicians, the guidelines have been widely adopted as mandatory by insurers, regulators and healthcare providers.

“Chronic pain patients all across the country are losing access to their pain medications that they depended on sometimes for 20 or 30 years,” Kristen Blanton told Fox55 News in Urbana, Illinois.

Don’t Punish Pain organizers held their first nationwide rallies in April and are planning another series of protests in January.

Why I Am So Ashamed of Canada

By Ann Marie Gaudon, PNN Columnist

As far as countries go, I have lived almost the entirety of my life believing that Canada had a fairly good track record for upholding human rights. Of course, we’re far from perfect, but when I looked around the world I still felt grateful for where I am.

I no longer feel this way. Now I feel a deep shame for Canada and I believe that history will show this era with a rather large black mark etched in its pages.

Unfortunately for all of us, politicians and bureaucrats do not have a great history of getting things right. And they’ve really blown it this time.

We’ve got a real problem. Canadians are dying like never before from a tainted illicit drug supply. These political players never cared about people overdosing until they began dying en masse.

The government’s answer in the past was to round them up and put them in jail. Yes, punish them for being impoverished, mentally ill, homeless, and victims of sexual and physical violence. Punish them because they were neglected, abused or abandoned and consequently suffer from addictions trying to cope with their miserable lot in life.

Now they are dying from drug overdoses – far too many and far too quickly. The government’s answer: Let’s lock up and throw away the key to the prescription medication cabinet!

Instead of solving one deadly drug problem, now we have two.

Logic would dictate to policy makers that to solve the overdose problem, one should go straight to other countries such as Portugal that have done a good job of saving lives. Yet what have they done in Canada? They’ve jumped on the frenzied, anti-opiate, lunatic fringe bandwagon. Instead of listening to progressive professionals and those suffering from addiction, they are hell-bent on blaming pain patients and their medications.

Has this helped? Well, as prescriptions continue to decrease, and pain patients suffer more and sometimes die, overdose deaths continue to soar.

I invite you to join me in my personal attempt to spread awareness about the worsening plight of the severely pained in Canada. It isn’t a pretty story, but it’s one that has to be told.

I’ve created four informative videos and uploaded them to YouTube. My personal story is the first video and also includes the state of chronic pain in Canada in 2018. In the second video, I interview my friend Beth who had unethical medical treatment forced upon her. It is incredulous what the Ontario College of Physicians and Surgeons (CPSO) has done to Beth – and they accept responsibility for nothing at all.

Beth tells her story below:

Next up is Dan, who has been a chronic pain patient stable on pain medications for over 20 years. He is no longer stable. The CPSO terrified his doctor, who in turn forced Dan to decrease his medications. Dan is not doing well as a result.

Finally, Paul explains how he organized a town hall meeting between framers of the 2017 Canadian opioid guidelines, a representative of the CPSO and a few others. These folks were to be “silent attendees” and listen to severe chronic pain patients tell them how enforcing the new guidelines has negatively impacted their health and lives. The whole idea was admirable, but Paul ultimately learned the hard way that the lives of severely pained patients don’t seem to matter at all to the people who decided these issues for us.

So now you have an idea of why I am so ashamed of Canada. I would love it if you would listen to these stories and spread them far and wide. People need to know what’s going on here. I would also appreciate your comments. Let’s stick together, there’s always strength in numbers.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

FDA Expands Safe Prescribing Program for Opioids

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration will require that educational training in pain management and safe opioid prescribing be offered to all healthcare providers under a major expansion of the agency’s Opioid Analgesic Risk Evaluation and Mitigation Strategy (REMS) program.

REMS is also being expanded to include immediate-release (IR) opioids such as hydrocodone, oxycodone and morphine. Until now, REMS regulations only applied to extended-release and long-acting (ER/LA) opioid analgesics, such as OxyContin and Exalgo. Warning labels will be updated for all IR opioids, which account for about 90 percent of opioid pain medications.

“Many people who become addicted to opioids will have their first exposure in the medical setting,” said FDA Commissioner Scott Gottlieb, MD, in a statement. “Today’s action, importantly, subjects immediate-release opioids – which are the most commonly prescribed opioid products – to a more stringent set of requirements.”

The REMS program was first established in 2012. It required manufacturers of ER/LA opioids to pay for continuing education programs for prescribers only. Updated educational content must now also be provided to nurses, pharmacists and other healthcare providers who seek it. The training will cover broader information about pain management, including alternatives to opioids for the treatment of pain.

The training is not mandatory, but the FDA is considering whether to require continuing educational programs in pain management and safe prescribing.

“The agency believes that all health care providers involved in the management of patients with pain should be educated about the safe use of opioids so that when they write or dispense a prescription for an opioid analgesic, or monitor patients receiving these medications, they can help ensure the proper product is selected for the patient and used with appropriate clinical oversight,” the agency said.

“I think these changes to the REMS are very good and long overdue,” said Bob Twillman, PhD, Executive Director of the Academy of Integrative Pain Management. “We know that the IR opioids are much more highly sought-after, versus ER/LA opioids, for purposes of abuse, and there is absolutely no reason why they (and their manufacturers) should be exempt from this requirement.  

“I’m not concerned, at this stage, about this change causing primary care providers to back off on prescribing, given that participation in the program is still completely voluntary for healthcare providers. If this voluntary status changes, and FDA finds a way to make REMS education mandatory, I will be concerned that some providers will opt out of prescribing opioids altogether.”

The FDA’s action greatly expands the number of opioid products covered by REMS from 62 to 347 opioid analgesics. The updated warning labels will strongly encourage providers to complete a REMS education program, and to counsel patients and caregivers on the safe use of opioid medication.

“Our goal is to help prevent patients from becoming addicted by decreasing unnecessary or inappropriate exposure to opioids and fostering rational prescribing to enable appropriate access to those patients who have legitimate medical need for these medicines,” said Gottlieb.

Opioid prescriptions in the United States fell sharply during the first half of 2018 and now stand at their lowest levels since 2003, according to data released last month by the FDA. The trend appears to be accelerating as many doctors lower doses, write fewer prescriptions or simply discharge pain patients.

While opioid prescriptions decline, overdoses continue to rise. According to preliminary data from the CDC, nearly 49,000 Americans died from opioid overdoses in 2017, over half of them due to illicit fentanyl, heroin and counterfeit drugs, not prescription opioids.

Former Tennant Patients Get New Doctor

By Pat Anson, PNN Editor

At a time when many pain patients have difficulty finding doctors willing to treat them, some of the sickest and most complicated pain patients in the U.S. have found a new physician. Or to be more precise, she found them.

Dr. Margaret Aranda is treating former patients of Dr. Forest Tennant, a prominent California pain physician who recently retired from clinical practice.  Tennant was seeing about 150 patients with severe intractable pain at his West Covina pain clinic. Most suffer from arachnoiditis, a chronic and painful disease of the spinal cord, and traveled to California from out-of-state because they could not find effective treatment locally.

Tennant, who is 77, is a beloved figure in the pain community. He was forced into retirement after the DEA raided his clinic last year and alleged he was running a pill mill. No charges were ever filed, but Tennant reluctantly agreed to close his clinic on the advice of his lawyer and doctor. That’s when Aranda stepped in and offered to take on Tennant’s patients.

“I feel very happy to be here and to be doing this and to feel qualified to do it because of my experience, my background and my education. But I think the thing I love the most is the connection I have with patients who understand that I’ve been through a lot myself,” said Aranda, an anesthesiologist whose medical career was put on hold for several years while she recovered from a car accident that left her with traumatic brain injuries.

“They just seem be relieved that they can talk to somebody who knows what it feels like. I think Dr. Tennant did that for them too. He wasn’t sick like a lot us were sick, but he carried that empathy with him. I find this to be very spiritual. I feel like I’m in the right place at the right time in my life and everything I went through prepared me for this.”

DR. MARGARET ARANDA

Tennant had success treating patients with an unusual combination of high dose opioid prescriptions, hormones, anti-inflammatory drugs and other medications, which Aranda plans to continue.

“I’m working to decrease the opioids as much as possible. For some patients that’s totally impossible, for others it’s not,” she told PNN. “I really think what we’re doing is redefining palliative care. I tell people this isn’t a pain clinic. This is a ‘keep you out of a wheelchair’ clinic. Keep you in the family. Keep you getting out of your house here and there.”

“Dr. Aranda is very intelligent and picked up on the scientific precepts of this disease and other things very rapidly,” says Tennant. “I was tickled to death the way she’s caught on to all this and knows how to carry on everything I was doing. Plus, she’s improving a lot of things I was doing.”

Under a Microscope

Aranda admits being a little worried about being scrutinized by the DEA.

“Of course, that would be the natural inclination I think for anyone in my field. It’s a little bit scary to walk in the shoes of a man who is so well known and beloved by everyone and had issues with the DEA I think most people felt were unfounded,” Aranda said.

“I am of course very concerned that they could be looking at me with a microscope. Or a double and triple microscope. But I think they already know our patient population and they now understand that we do have some of the sickest patients in the country. That’s why they come to us from all over. And so, we’re just careful.”

While Tennant operated his clinic basically as a charity, Aranda is “cash only” and will not accept medical insurance.  She is temporarily seeing patients at a clinic in Malibu but is looking for a permanent location.

Like Tennant, Aranda is willing to treat patients from out-of-state, including those who suffer from severe intractable pain. Patients interested in seeing Aranda can reach her at (800) 992-9280.   

DR. FOREST TENNANT

As for Tennant, he’s not quite ready to retire completely. He plans to continue researching arachnoiditis, a progressive and incurable disease that often begins when the spinal cord is damaged during surgery or punctured by a misplaced needle during an epidural steroid injection.

Inflammation sets in and can spiral out of control, forming scar tissue that cause spinal nerves to stick together. That leads to adhesive arachnoiditis and neurological problems, which can cause burning or stinging pain that can be felt from head to toe.

Arachnoiditis is poorly understood and often misdiagnosed as “failed back syndrome.” Tennant estimates as many as a million Americans may have it. Few doctors are trained to recognize the symptoms or know how to treat it.

“I’m going to be spending my time trying to research and educate on arachanoiditis. I think it’s the biggest, most severe pain problem we have,” says Tennant. “Before I hang up my spurs totally I want to make sure arachnoiditis is known to every family doctor and nurse practitioner in every community in the country.”

Everything I Learned About Using Kratom for Pain

By Crystal Lindell, PNN Columnist

Here’s the thing about kratom. It works. It seriously works. If you are having a horrific pain flare and you put some under your tongue, your pain will be gone in less than three minutes. True story.

It also made me gain 27 pounds because it acts like an antidepressant in a lot of ways, and my body always gains weight when I’m on drugs like that.

And it’s pretty expensive — about $20 for 30 grams if you don’t get it in bulk, which is about six servings. For me each dose only lasts between two to five hours depending on how bad my pain is. You can get it in bulk, which I recommend, and then it’s $150 for 1 Kilo — so much cheaper per serving.

But even if you get it cheap, it’s really disgusting. I take it by shoving a spoonful under my tongue, saying a prayer, holding back the urge to vomit, and chugging Gatorade to get it down. It’s not the only way to take it, but it’s the only way that hits you in less than three minutes.

I’ve heard others put it in tea or smoothies, and of course there are capsules, but those take longer to kick in and don’t seem to work as well.

There’s also a lot of brands and strains and it can be hard to find the ones that works best for you.

Trainwreck Kratom by Earth Kratom is by far the best version I have found, and it literally relieves my pain as much as hydrocodone would on most days. It’s a mix of 11 different kratom strains and they seem to work better together.

But even with all the drawbacks, kratom has some serious advantages.

First and foremost, I have access to it. There’s no need for a prescription or a trip to the doctor — just a quick stop by the local smoke shop and I’m all stocked up. And it’s completely legal in most states, so there’s no need to worry about some of the issues that come with marijuana usage.

In addition to helping with pain, it also helps with depression and anxiety, which is great seeing as how most people in chronic pain have one or both.

It’s also the perfect way to get through a physical opioid withdrawal, as it will eliminate your symptoms in most cases. Yes, then you’ll have to go off kratom after that, but it’s much easier than the withdrawal that hydrocodone tends to bring with it.

One drawback is that most doctors don’t know much about it, so it can be hard to explain to them that you’re using it and they likely won’t be able to tell you how it will interact with other medications. There’s also been some bad press around it, including reports of deaths, so doctors may be wary about you using it at all. The FDA considers kratom to be an opioid and says it should not be used to treat any medical condition.

But if you’re dealing with serious chronic pain, and you’re sick of jumping through hoops to get an opioid prescription or your medication just isn’t cutting it, I would highly recommend you give kratom a try.

Just don’t try to take it with a carbonated beverage. The bubbles will lift it into your sinuses, and it feels like you’re being waterboarded with dirt. But other than that — it’s awesome!

Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. Crystal has hypermobile Ehlers-Danlos syndrome. 

The Abyss of Chronic Pain

By David Hanscom, MD, PNN Columnist

One afternoon, I was listening to a pain patient attempt to describe the depth of her suffering, and it hit me how dark and deep this hole of chronic pain can be.

I had a flashback to my own experience with pain. Not only did I not know how I ended up in that level of misery, I had no hope and wasn’t being given any answers. I kept descending deeper and deeper into darkness.

Words couldn’t come close to describing my physical and mental suffering, but the image that came to mind was a deep dark abyss. I will never forget what it was like to be there and trapped in the abyss for over 15 years.

One night, I was driving across a bridge when suddenly my heart began to pound.  I couldn’t breathe, began sweating and became light-headed. I thought I was going to die. It was the first of many panic attacks. And it became much worse. I sank into a deep depression.

I honestly had no clue at the time that my anxiety and other symptoms were all linked together by sustained levels of stress hormones, such as adrenaline, cortisol and histamines.

I couldn’t sleep because of endless racing thoughts. My ears were ringing and my feet constantly burned. I began to get migraine headaches weekly. My scalp itched, and skin rashes would pop up all over my body and then disappear. I experienced intermittent crushing chest pain.

As unpleasant as these physical symptoms were, it wasn’t the worst part of the story.

I began a relentless search for answers. What was happening to me? My life went from being a hard-working young physician with a bright future to just trying to survive. As a spine surgeon in a large city, I had access to the best medical care and underwent all sorts of imaging and blood testing. No one could tell me what was going on. I became increasingly frustrated and moody.

After seven years of this, I lost my marriage. No marriage could have survived the obsessive energy I was using to try and escape from the abyss.

My anxiety progressed to a full-blown obsessive-compulsive disorder (OCD), which is characterized by repetitive and vivid intrusive thoughts. It was brutal. I had always thought that OCD was a joke, but it may be the worst mentally painful experience in human existence. I looked up the treatment and prognosis for it, and it was dismal.

My mind began to play tricks on me. I become an “epiphany addict.” I was sure I could find an answer if I looked hard enough. I read book after book, saw doctors, tried different medications, practiced meditation, and discussed my situation with anyone who would listen. That number grew smaller, as people got tired of listening to me and I became increasingly socially isolated.  

Every aspect of this experience was miserable but the loneliness I felt was the worst. Being alone, I had more time to think about my misery and became fearful that people didn’t want to be around me. I hadn’t realized how terrible being lonely could be.

I wanted to quit being a doctor, but my instincts told me to hang on. I still enjoyed performing complex spine surgery and running my practice. I liked my staff, colleagues and patients. In retrospect, that may have been the one thing that provided the structure to keep me going. My personal life had disintegrated.

As I write this column, I still feel woefully inadequate to find the words to characterize the intensity of my suffering. I was in this hole for over 15 years and crossed the line to end it all.

Learning How to Feel Good Again

Then in 2003, I picked up a book by Dr. David Burns, called “Feeling Good: The New Mood Therapy.” It’s about self-directed cognitive behavioral therapy.  Burns was adamant from the beginning of the book that the key to recovery was to start writing. His format is a three-column technique where you write down your disruptive thoughts, categorize them into one of 10 “cognitive distortions,” and then write down more rational thoughts.

I began to write for hours and for the first time in 15 years felt a shift in my mood and thinking. Burns is right, the act of writing is important. There are now over 1,000 research papers documenting the effectiveness of this approach.  

Six months after I began this therapy, I connected (badly) with my deep-seated anger and was completely miserable for about 2 weeks. But as I emerged from this fog, I began to feel better. All of my physical symptoms eventually disappeared, including my headaches, burning in my feet, anxiety, and tinnitus.

It all goes back to the stress hormones. When you are trapped by anything, especially pain, your body is exposed to sustained levels of stress chemicals and each organ will react in its own specific way. Today, my symptoms remain at minimal levels unless they are triggered, and I have learned how to quickly return to feeling good.

There are many additional layers to the healing journey that are presented on my website. Each person will relate to the concepts in a different way, but the outcomes have been consistently good. There is a recent research paper that shows simply learning about the neuroscience of chronic pain can significantly reduce it.

I got incredibly lucky and feel fortunate to be able to pass along these healing concepts to my patients. It has been an unexpected and rewarding phase of my career.

Dr. David Hanscom is a spinal surgeon who has helped hundreds of back pain sufferers by teaching them how to calm their central nervous systems without the use of drugs or surgery.

In his book Back in Control, Hanscom shares the latest developments in neuroscience research and his own personal history with pain.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Can Sugar Pills Relieve Chronic Pain?

By Pat Anson, PNN Editor

“Sugar pills relieve pain for chronic pain patients”

That is the actual headline in a news release issued this week by the Feinberg School of Medicine at Northwestern University. If you’re a pain sufferer and that doesn’t make you laugh or get your blood boiling – then the rest of this article probably will.

So be forewarned.

In an age when many chronic pain patients are being urged to try yoga, meditation, acupuncture and plain old aspirin, Northwestern researchers have concluded that many could find pain relief in a sugar pill.

That conclusion is based on a lengthy but small study of 63 patients with chronic back pain.  Twenty patients were given no treatment, while the rest were given a placebo – a sugar pill that they were told was pain medication. No one was given an actual painkiller.

Over the course of 8 weeks, participants tracked their pain on a smartphone app, MRI brain images were taken, and psychological profiles of each patient were made.

The study, published in the journal Nature Communications, found that about half the patients who took the placebo had a 30 percent reduction in pain, a level considered just as effective as a real painkiller.

Researchers said patients who responded to the sugar pills had a similar brain anatomy and psychological traits. The right side of their emotional brain was larger than the left, and they had a larger sensory area than people who did not respond to the placebo. The placebo responders also were more emotionally self-aware, sensitive to painful situations and mindful of their environment.

“This is the first brain imaging RCT (randomized controlled trial) specifically designed to study chronic pain patients receiving placebo pills compared to a no treatment arm,” said senior study author A. Vania Apkarian, PhD, a professor of physiology at Northwestern University Feinberg School of Medicine.  

“Daily pain ratings from a smart phone revealed that patients receiving placebo pills showed stronger pain reduction and a higher response rate compared to patients in the no treatment arm, indicating that placebo pills successfully induced analgesia that could not be explained by the natural history of the patient or the mere exposure to the study.”

Doctors ‘Should Seriously Consider’ Placebos

Although his study is small and needs to be replicated, Apkarian thinks doctors should put his findings to work.

"Clinicians who are treating chronic pain patients should seriously consider that some will get as good a response to a sugar pill as any other drug," he said. "They should use it and see the outcome. This opens up a whole new field."

Giving pain patients sugar pills would not only save healthcare costs, Apkarian says they would eliminate the risk of addiction and other side-effects from pharmaceutical drugs.

"It's much better to give someone a non-active drug rather than an active drug and get the same result," Apkarian said. "Most pharmacological treatments have long-term adverse effects or addictive properties. Placebo becomes as good an option for treatment as any drug we have on the market."

The medical community has long known about the potency of the placebo effect and put it to use. Doctors as far back as the late 18th century used placebo treatments “more to please than benefit the patient.”

Today, the gold standard of clinical trials is a “placebo-controlled study” in which some participants are given sugar pills and sham treatments. The medication or therapy being studied has to be found more effective than the placebo for the study to be considered a success.

Time magazine recently published a cover story on placebos, sharing the stories of real patients who find relief in placebo pills even though they know they’re fake.

You don’t need to enroll in a clinical study to take placebos. You can buy a bottle of Zeebo’s “honest placebo pills” for $14.95 on Amazon. Some of the reviews for Zeebo are hilarious.

“I have not bought this product, but just reading about it brightened my day. And the comfort of knowing that if I ever needed a good placebo, its right here available with free shipping and two day delivery. I feel better already!” said one reviewer.

“The pills do every thing promised, which is nothing,” wrote another reviewer. “I purchased them in the forlorn hope that they would fool my demented wife that they helped to relieve her chronic pain. I didn't expect much going in and I wasn't disappointed.”

CDC: 50 Million Americans Have Chronic Pain

By Pat Anson, PNN Editor

The Centers for Disease Control and Prevention and other federal agencies have faced a fair amount of criticism over the years for adopting insensitive policies and guidelines that are often harmful to the pain community. But there are growing signs the CDC and other agencies are starting to listen to or at least better understand pain patients.

Today the CDC released a new report estimating that 50 million Americans – just over 20 percent of the adult population – have chronic pain. About 20 million of them have “high-impact chronic pain” -- pain severe enough that it frequently limits life or work activities. The estimates are based on the 2016 National Health Interview Survey of over 33,000 adults.

“Pain is a component of many chronic conditions, and chronic pain is emerging as a health concern on its own, with negative consequences to individual persons, their families, and society as a whole,” reported James Dahlhamer, PhD, of the CDC's Division of Health Interview Statistics.

Dahlhamer and his colleagues found that women, unemployed older adults, adults living in poverty, rural residents and people without public health insurance are significantly more likely to have chronic pain, while the risk of pain is lower for people with a bachelor’s degree.

“Socioeconomic status appears to be a common factor in many of the subgroup differences in high-impact chronic pain prevalence,” they found. “Education, poverty, and health insurance coverage have been determined to be associated with both general health status and the presence of specific health conditions as well as with patients’ success in navigating the health care system. Identifying populations at risk is necessary to inform efforts for developing and targeting quality pain services.”

Different Estimates

Last week the National Institutes of Health (NIH) released its own research on high impact chronic pain (HICP), estimating that 11 million American adults have it -- about half the CDC’s estimate.

Both the NIH and CDC are part of the Department of Health and Human Services (HHS). It was not immediately clear why the two estimates are so far apart – or why two government agencies in the same department were studying the same thing at the same time.  

It’s certainly not the first time researchers have disagreed on the number of people in pain. In 2011, the Institute of Medicine released a landmark report claiming at least 100 million Americans have chronic pain, an estimate that one critic said was a “ridiculous number.” Other estimates range from 39 to 70 million.

“The multidimensional nature of chronic pain is not reflected in commonly used operational definitions… resulting in inordinately high prevalence estimates that limit our ability to effectively address chronic pain on a national level,” said Mark Pitcher, PhD, a visiting fellow at the National Center for Complementary and Integrative Health (NCCIH).

Like their counterparts at the CDC, NIH researchers found that socioeconomic factors play a significant role in high impact chronic pain. HICP sufferers not only have more severe pain, they are more likely to have mental and cognitive health issues, as well as substantially higher healthcare costs. About 83 percent of people with HICP are unable to work and one-third have difficulty with simple activities such as bathing and getting dressed.

“By differentiating those with HICP, a condition that is associated with higher levels of anxiety, depression, fatigue, and cognitive difficulty, we hope to improve clinical research and practice,” said co-author M. Catherine Bushnell, PhD, scientific director at NCCIH.

The concept of HICP was first proposed by the National Pain Strategy to better identify patients with pain severe enough to interfere with work and life activities. It also helps distinguish HICP from other types of chronic pain that are less impactful and more easily treated.

“It is crucial that we fully understand how people’s lives are affected by chronic pain. It will help improve care for individuals living with chronic pain and strategically guide our research programs that aim to reduce the burden of pain at the population level,” said Linda Porter, PhD, director of the Office of Pain Policy at the National Institute of Neurological Disorders and Stroke. 

The Food and Drug Administration has also recently taken steps to better understand the chronic pain population. In July, the FDA held a day-long public hearing and heard from dozens of pain patients and advocates. Some fought back tears as they testified about the lack of access to opioid medication and the deteriorating quality of pain care in the U.S.

Many Invasive Surgeries No Better Than Placebo

By Pat Anson, PNN Editor

In an age when doctors are urged not to prescribe opioids, many patients are being told to have surgery or other invasive procedures to treat their chronic pain.

But a systematic review of 25 clinical trials found little evidence that invasive surgeries are more effective than placebo or sham procedures in reducing low back and knee pain. The study was published in the journal Pain Medicine.

"Our findings raise several questions for clinicians, researchers, and policy-makers. First, can we justify widespread use of these procedures without rigorous testing?" said lead author Wayne Jonas, MD, a Professor of Family Medicine at Georgetown University School of Medicine.

“Given their high cost and safety concerns, more rigorous studies are required before invasive procedures are routinely used for patients with chronic pain.”

The invasive procedures that were analyzed include arthroscopic, endoscopic and laparoscopic surgeries, as well as radiofrequency ablations, laser treatments and other interventions.

In each study, researchers also performed sham or placebo procedures on a control group where they faked the invasive procedure. Patients did not know which intervention (real or sham) they received. Researchers then compared the patients’ pain intensity, disability, health-related quality of life, use of medication, adverse events, and other factors.

They found that reduction in disability did not differ between the two groups three months after the procedures or at six months. Seven of the studies on low back pain and three on knee osteoarthritis showed no difference in pain intensity at six months compared with the sham procedures.

“There is little evidence for the specific efficacy beyond sham for invasive procedures in chronic pain. A moderate amount of evidence does not support the use of invasive procedures as compared with sham procedures for patients with chronic back or knee pain,” said Jonas.

Invasive treatments are being increasingly used as an alternative to opioids. Americans spent an estimated $45 billion on surgery for chronic low back pain and $41 billion on arthroplasty for knee pain in 2014.

Several previous studies have also questioned the value of arthroplasty. Over 850,000 arthroscopic surgeries are performed every year to relieve knee pain in the UK and the United States. But a 2015 study published in the BMJ questioned the evidence behind the surgery and said it provides only “small inconsequential benefit.”

One in 10 Suicides Linked to Chronic Pain

By Pat Anson, PNN Editor

The nation’s suicide rate has been climbing steadily for over a decade and so have the number of suicides associated with chronic pain, according to a groundbreaking study by researchers at the Centers for Disease Control and Prevention.

The researchers looked at over 123,000 suicides in 18 states from 2003 to 2014 and found that about 10 percent of those who died either had chronic pain in their medical records or mentioned it in suicide notes. The percentage of suicides linked to pain grew from 7.4% in 2003 to 10.2% in 2014 – a 27 percent increase in just over a decade.  

“Our results highlight the importance of pain in quality of life and premature death, and contribute to the growing body of evidence indicating that chronic pain might be an important risk factor for suicide,” said lead author Emiko Petrosky, MD, CDC National Center for Injury Prevention and Control.

“The results probably underrepresent the true percentage of suicide decedents who had chronic pain, given the nature of the data and how they were captured.”

The study, published in the Annals of Internal Medicine, is one of the first of its kind to explore the connection between pain and suicide – which is now the 10th leading cause of death in the United States.

Nearly 45,000 Americans took their own lives in 2016, more than the number of poisoning deaths from illicit and prescription opioids.

Back pain was the most common condition involved in pain suicides, followed by cancer pain, arthritis, migraine and fibromyalgia. Anxiety and depression were also more likely to be diagnosed in pain suicides than in those without pain.

More than a quarter of the suicide victims with chronic pain (27.1%) had served in the military. Over half died from firearm injuries and 16.2% by opioid overdose.

“Although opioid prescribing to treat chronic pain has increased in recent years, we found that the percentage of decedents with chronic pain who died by opioid overdose did not change over time. This finding suggests that increases in opioid availability are not associated with greater suicide risk from opioid overdose among patients with chronic pain.” Petrosky said.

It’s worth noting that the 2003-2014 study period was before the CDC released its controversial guideline on opioid prescribing in 2016, a sea change event that many in the pain community blame for lack of access to opioid medication and growing number of patient suicides.

“I know that I could not stand my pain if my morphine is taken away,” one reader told us. “I will be a suicide statistic. Make sure the CDC gets blamed for my death.”

“I can only speak for myself how the CDC guidelines and the FORCED reduction of my pain medicine has brought my life to a near standstill. I get up in the mornings now and I think 5 out of those 7 mornings I sit here and cry,” said another.

“A few years ago I would've thought that the idea of deliberately driving people to suicide was a crazy conspiracy theory. Now I have almost no problem believing it,” wrote another reader.

As PNN has reported, the CDC is making no concerted effort to evaluate or track the impact of its opioid guideline on patients or on the quality of pain care. When asked if lack of access to opioid medication may be contributing to patient suicides, CDC officials would only say they were tracking opioid prescribing rates and “working on comprehensive pain management strategies.”

App Helps Document Effectiveness of Medical Cannabis

By Pat Anson, PNN Editor

Two innovative studies have found evidence that medical marijuana can provide significant relief from a wide range of symptoms associated with chronic pain, including insomnia, seizures, depression, anxiety and fatigue.

Unlike many clinical trials that evaluate a small number of patients with surveys, researchers at the University of New Mexico relied on data from the Releaf App, a free mobile software program that collected user-entered, real-time information from over 2,800 people on their use of cannabis and its effects.

"If the results found in our studies can be extrapolated to the general population, cannabis could systematically replace multi-billion dollar medication industries around the world. It is likely already beginning to do so," said co-author Jacob Vigil, PhD, a UNM psychology professor.

In the first study, published in the journal Frontiers in Pharmacology, users reported an average symptom reduction of nearly 4 points on a 1-10 scale after the consumption of cannabis in various forms, including vaporizers, joints, oils and topicals.

Twenty-seven different health conditions were evaluated, from inflammation and tremors to muscle and nerve pain. Over 94 percent of cannabis users reported some type of symptom relief, with patients suffering from anxiety and depression having the greatest improvement.

“Clinically and statistically significant reductions in patient-reported symptom severity levels existed in every single symptom category, suggesting that cannabis may be an effective substitute for several classes of medications with potentially dangerous and uncomfortable side effects and risky polypharmaceutical interactions, including opioids, benzodiazepines, and antidepressants,” said Vigil.

“Our results indicate that patients report greater symptom relief for treating agitation/irritability, anxiety, depression, excessive appetite, insomnia, loss of appetite, nausea, gastrointestinal pain, stress, and tremors than they do for treating back pain. Patients reported less symptom relief for treating impulsivity, headache, and nerve pain as compared to relief for treating back pain.

source: frontiers in pharmacology

The second study, recently published in the journal Medicines, focused on the use of cannabis flower (also known as “buds”) in treating insomnia. Over 400 patients self-reported their symptoms using the Releaf app. Researchers found the use of pipes and vaporizers to ingest cannabis was associated with greater symptom relief and fewer negative side effects than the use of joints. Cannabidiol (CBD) was also associated with greater symptom relief than tetrahydrocannabinol (THC), the active ingredient in marijuana that causes euphoria.

A major weakness of both studies is that there was no control group or use of a placebo. Participants were also more likely to have previously used cannabis and may have been biased when reporting on their own symptoms. But UNM researchers say their findings are more representative of what cannabis users will actually experience.

“Observational studies are more appropriate than experimental research designs for measuring how patients choose to consume cannabis and the effects of those choices,” said Vigil. “By collecting massive amounts of patient-entered information on actual cannabis used under real-life circumstances we are able to measure why patients consume cannabis, the types of products that patients use, and the immediate and longer-term effects of such use.”

In addition to its therapeutic benefits, cannabis use was associated with frequent, although not serious side effects. Patients reported more positive feelings (relaxed, peaceful, comfy) than they did negative ones (paranoid, confused, headache).  

"If the short-term risk-benefit profile of cannabis found in our studies reflects its longer-term therapeutic potential, substitution of cannabis for traditional pharmaceuticals could reduce the risk of dangerous drug interactions and the costs associated with taking multiple medications by allowing patients to treat a constellation of comorbidities with a single treatment modality,” said co-author Sarah See Stith, PhD, a UNM economics professor.

Lady Gaga: ‘Chronic Pain Is No Joke’

By Pat Anson, PNN Editor

One of the few celebrities brave enough to speak openly about their battle with chronic pain is talking about it again – in a fashion magazine.

"Chronic pain is no joke. And it's every day waking up not knowing how you're going to feel," Lada Gaga told Vogue in a cover story.

Last year, Lady Gaga revealed that she suffers from fibromyalgia, a poorly understood disorder characterized by deep tissue pain, fatigue, depression and insomnia.

A pain flare up forced her to cancel several concert appearances, which led some skeptics to complain that it was a publicity stunt to promote “Gaga: Five Foot Two,” a Netflix documentary that shows the singer being treated for chronic pain.

Lady Gaga says her fibromyalgia is very real – along with the post-traumatic stress disorder (PTSD) she has from being sexually assaulted as a teenager.

"I get so irritated with people who don't believe fibromyalgia is real," she told Vogue. "For me, and I think for many others, it's really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder - all of which sends the nervous system into overdrive, and then you have nerve pain as a result.

“You know that feeling when you’re on a roller coaster and you’re just about to go down the really steep slope? That fear and the drop in your stomach? My diaphragm seizes up. Then I have a hard time breathing, and my whole body goes into a spasm. And I begin to cry. That’s what it feels like for trauma victims every day, and it’s… miserable. I always say that trauma has a brain. And it works its way into everything that you do.”

The 32-year old singer said it took years for her to open up about the sexual assault.

“No one else knew. It was almost like I tried to erase it from my brain. And when it finally came out, it was like a big, ugly monster. And you have to face the monster to heal,” she said. “I felt like I was lying to the world because I was feeling so much pain but nobody knew. So that’s why I came out and said that I have PTSD, because I don’t want to hide — any more than I already have to.”

In addition to fibromyalgia and PTSD, Lady Gaga also lives with synovitis, a chronic inflammation in her hip caused by overuse and injury.  Like many pain sufferers, the singer has tried a variety of different treatments to ease her discomfort – from massage to hot saunas to Epsom salt baths. In 2016, she posted on Instagram an image of herself sitting in a sauna wrapped in an emergency blanket.

Lady Gaga’s battle with chronic pain is only a small part of her interview with Vogue. She’s helping to promote A Star is Born – her new film with Brad Cooper that premiers next month.

The Role of Suicide in the Opioid Crisis

By Roger Chriss, PNN Columnist

Suicide is an under-appreciated factor in the opioid crisis. Media reports rarely mention it, and pundits and politicians often ignore it. But the reality emerging from experts and a careful study of drug deaths shows that it is very important.

“We’ve done preliminary work suggesting that 22 to 37 percent of opioid-related overdoses are, in fact, suicides or suicide attempts,” Bobbi Jo Yarborough, PsyD, an investigator at the Kaiser Permanente Center for Health Research, told HealthItAnalytics.

Yarborough’s estimate is 2 to 3 times higher than the CDC’s. The CDC’s Annual Surveillance Report of Drug-Related Risks and Outcomes states that there were 5,206 suicides among the 47,105 poisoning deaths in 2015. This represents a suicide rate of 11 percent. The CDC gives similar data for 2016 drug deaths, estimating that only 8% were suicides.

Recognition of the importance of suicide in the opioid crisis has been slow to come.

In 2017, then-president of the American Psychiatric Association, Dr. Maria Oquendo, suggested that the suicide rate may be as high as 40 percent, writing in a guest blog for the National Institute on Drug Abuse (NIDA) that the risk for suicide death was over 2-fold for men with opioid use disorder and for women it was more than 8-fold.

Now, finally, interest in this issue is growing. The American Foundation for Suicide Prevention recently issued its first grant for studying suicide related to opioid use.

Kaiser Permanente also recently received a grant from NIDA to “examine the role of opioid use in suicide risk and develop better tools to help clinicians identify patients who are at highest risk.”  Kaiser researchers plan to use machine learning and analytics to predict the likelihood of a suicide attempt within 90 days of a primary care outpatient or mental health visit.

Fundamental questions about suicide in the opioid crisis remain to be answered.

"No one has answered the chicken and egg (question)," Dr. Kiame Mahaniah, a Massachusetts family physician, told NPR. “(Do people) have mental health issues that lead to addiction, or did a life of addiction then trigger mental health problems?”

Similarly, people with chronic pain disorders are thought to be “at increased risk for suicide compared with the general population,” as noted in a 2018 PAINWeek conference presentation.

But causality is also uncertain. At present it is not clear what proportion of suicides in the opioid crisis are due to despair, anxiety, addiction or the increasingly poor quality of pain care. There are many anecdotal reports of pain patient suicides, a tragically ignored feature of the crisis.

These distinctions are critical for public health policy in the opioid crisis. Current policy is largely geared toward restricting the opioid supply and monitoring legal pills after prescription. This does little to address underlying mental health issues, illegal drug use, or the impact of psychosocial or economic circumstances on people.

We need a clearer understanding of the opioid crisis, and that includes suicide.

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.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

My Guidebook for Living With Chronic Pain

By Mia Maysack, Guest Columnist

Chronic pain can mean a lot of different things, depending on its severity on any given day as well as the seriousness of the condition that causes it. Those of us of who live with it are already at somewhat of a disadvantage, as opposed to others living more carefree lives.

Chronic migraines, for example, make it difficult for me to be able to complete even the simplest of daily tasks due to the confusion, pain, overall sensitivity and over-stimulation they cause.

This creates a mandatory “go with the flow” approach to life due to the unpredictability of symptoms. Plans, appointments, dates, commitments, family gatherings and social activities -- not to mention work -- are constantly needing to be changed, rescheduled or canceled. That gets old fast for us, as well as for everyone our absence affects.

There's no limit to how great of a ripple effect that can have. I have a personal nagging guilt I carry in my heart each time it happens. In an effort to alleviate the pressures, I've gotten to the point where I do my absolute best to avoid making plans.

I may live mostly feeling “under the weather” but at the end of the day and all throughout it I am still a person. I have agendas, hopes, dreams and goals, so please understand the disappointment and frustration I feel from continually placing everything on hold and being powerless to stop it.

Picture this: A thief breaks into your home in the middle of the night. Imagine watching this person tear your home apart, destroy so much of what you care about and worked hard for, yet you are unable to do anything to control the situation or make it stop. That criminal for me are my migraines. They steal a lot from me.

Several times now, I have had a successful life built only to witness the big bad wolf of head pain come and blow it all down. Then I am confronted with gazing upon the ruins my life and reflecting on how much it took to get there in the first place. I then decide that dwelling in the past will not fix or solve nothing, so I take a deep breath and clean up the mess yet again.  

There has never been an employment situation that has not been impacted by my illness. I'm a worker bee, but pushing myself so hard for so long has resulted in an inability to continue onward with my aspirations. The realization of not being able to live up to who you want to be is a tough one. One cannot refrain from inquiring within, “What is wrong with me?”

All the while, outsiders have the same question, most with a tinge of disbelief: “She looks and seems fine. What, if anything, is really wrong with her?” 

Taking Care of Me First

One of the greatest gifts I've ever given myself is taking care of me first. Whoever is meant to stand by you through this treacherous journey will always be understanding when you do. 

Think of it this way: When you know someone that you care about is feeling unwell, what do you do?  You offer support, advise them to rest, take the time they need, and do whatever is necessary for the sake of their health.

We as chronic pain sufferers deserve the same compassion, empathy, respect and self-care.  I've learned that forgiveness, patience and grace for ourselves is just as important as having those qualities available for others. 

Never once have I had a medical professional ask how I am doing in terms of coping with this heavy burden of a life-long condition. It has been an excruciating process to get to where I am now. There is no guidebook for living with chronic pain. So I created my own.

I prefer to find the positive in changes as they come and to not worry or over-analyze them after they've arrived. For me, it's all about finding the joy, beauty and blessing in the given moment. There is always something to be appreciated and admired.

There's no doubt that an underlayer of sadness accompanies our ailments and it's important for us to understand that is completely normal. It's also crucial to allow ourselves to truly feel that grief. There's no expiration date or time limit on learning how to deal with this crappy hand we have been dealt. We keep our poker faces on as we figure out how to conduct ourselves because folding up or giving in is will never be a suitable option. We are tough and have come too far to do that.

When it gets to be too much and you're not sure how much longer you can hold on, raise your stakes and tell the universe: “Let's do this. I am all in!”

Mia Maysack lives in Wisconsin. She is lives with chronic migraine and cluster headaches. Mia is a proud supporter of the Alliance for Headache Disorders Advocacy and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

FDA Wants More Medical Devices to Treat Pain

By Pat Anson, Editor

The deadline is fast approaching for companies to enter the Food and Drug Administration’s medical device challenge, a contest of sorts aimed at stimulating the development of new technologies to treat pain and prevent opioid abuse.

The FDA announced the innovation program in May and the deadline for applications is September 30.  Medical devices in any state of development – including those already on the market – are eligible for submission.

“Medical devices, including digital health devices like mobile medical apps, have the potential to play a unique and important role in tackling the opioid crisis,” FDA Commissioner Scott Gottlieb, MD, said in a statement. “Better medical devices that can effectively address local pain syndromes can, in some cases, supplant the use of systemic opioids. This can help reduce overall use of opioids.”

Devices that are found to innovative will receive a “breakthrough device” designation from the FDA – similar to the “fast track” designation that the agency gives to promising pharmaceutical drugs. With fewer regulatory hurdles, companies can bring their products to the market sooner.

“I think its great. It’s exactly the kind of thing that’s needed,” said Shai Gozani, MD, President and CEO of NeuroMetrix, the maker of Quell. “It’s a little unclear what exactly they’ll offer to the winners. It looks like they’ll give you intensive help for a period of time to climb the regulatory pathway."

In recent years, the FDA has granted or approved over 200 devices related to the treatment and management of pain. One of them was Quell – a nerve stimulation device worn just below the knee – that relieves pain without drugs in patients suffering from arthritis, neuropathy, fibromyalgia and other chronic conditions. Since its release in 2015, over 150,000 Quell devices have been shipped.

This week NeuroMetrix released Quell 2.0 – an updated version that is half the size and weight. Customers wanted a smaller device to make it easier and more comfortable to wear throughout the day and while sleeping.

NEUROMETRIX IMAGE

“The feedback we got from customers over the past three years is that the single most valuable way to improve the product was to make it smaller,” said Gozani.  “Quell 2.0 is half the size, without any sacrifice in the electric stimulation characteristics. In fact, we increased the power by 20 percent, which allows us to stretch the range of patients that can be treated even further.”    

Gozani told PNN there is no single disorder or medical condition that Quell works best on -– it depends more on the individual, who may live with a variety of different conditions.

“Most people who use our product typically have five sites of pain and three or four medical conditions. It’s not like you can say that person has diabetes or that person has lower back pain or knee osteoarthritis. It all overlaps,” he said. “Surprisingly, we’ve seen that it works better in older adults than in younger.”

PNN columnist Jennifer Kilgore, who lives with chronic back pain, has used Quell every day for three years. She appears below in this promotional video for Quell.

A major difference between Quell 2.0 and the older “classic” Quell is that the new version is operated entirely by an app. It adjusts therapy automatically based on body position and doesn’t need to be turned on and off.

Quell is sold over-the-counter, does not require a prescription and is not usually covered by insurance. Quell 2.0 sells for $299, while the classic Quell is still available at $249. There’s a 60-day money back guarantee for both.

For more information, click here.