Australian Study Finds Cannabis Does Little for Pain

By Roger Chriss, PNN Columnist

A controversial study recently published in The Lancet Public Health followed over 1,500 Australian adults with chronic non-cancer pain for four years – one of the longest studies of its kind. All used prescription opioids and about half tried using cannabis for pain, some occasionally and others daily or near daily.

Advocates of medical marijuana as a treatment for pain may be surprised by the findings.

In the Pain and Opioids IN Treatment (POINT) study, Gabrielle Campbell, PhD, and colleagues at the University of New South Wales found "no evidence that cannabis use improved patient outcomes.”

"At each assessment, participants who were using cannabis reported greater pain and anxiety, were coping less well with their pain, and reported that pain was interfering more in their life, compared to those not using cannabis," said Campbell, who was lead author of the study. "There was no clear evidence that cannabis led to reduced pain severity or pain interference or led participants to reduce their opioid use or dose."

These findings are not unique. Campbell was co-author of a recent review in the journal Pain that found that “evidence for effectiveness of cannabinoids in chronic non-cancer pain is limited.”  Cochrane reviews came to similar conclusions about cannabis for treating fibromyalgia and neuropathic pain.

In short, cannabis helps, but maybe not that much.

The POINT study would seem to contradict the 2017 National Academies of Sciences (NAS) report, which found “substantial evidence” that cannabis is an effective treatment for chronic pain, but in only five good-to-fair quality studies. Overall, the NAS report found that “cannabinoids demonstrate a modest effect on pain.”

About a third of the cannabis users in the POINT study reported reduced opioid use, but the prescription data showed that there was actually no difference.

The study also found that most cannabis users believed they were benefiting from cannabis, but there was no objective improvement in their pain scores.

“It is really difficult to disentangle the reasons for this,” Campbell told Cosmos. “One hypothesis is that it may improve sleep and subjective well-being.”

This is consistent with other findings that cannabis doesn’t reduce pain, but helps people feel better. The book “A New Leaf: The End of Cannabis Prohibition” states that “patients often say that cannabis mostly disassociates them from the pain, like it’s placed in another room instead of eliminated.”

Similar results were obtained in an Oxford study, which found that “an oral tablet of THC, the psychoactive ingredient in cannabis, tended to make the experience of pain more bearable, rather than actually reduce the intensity of the pain.”

Masking pain may seem like a good thing. But as Grant Brenner, MD, points out in Psychology Today, believing that there is a benefit when there isn't one is problematic. Making pain more bearable may improve mood and sleep, but it could also lead patients to underestimate the significance of a serious health issue. This problem applies to many forms of pain management and requires further research.

“The illusion that a drug is helping with a condition when it is not can get in the way of seeking effective treatment and obtaining real relief,” said Brenner. “Rather than helping with actual pain, difficulty from pain, and need for opioid medication, cannabis consumption may lead people to believe they are improving when in reality they are not.”

The POINT study found what many other studies have been finding about cannabis and chronic pain: Some people experience some benefits some of the time. But the study also has limitations. Participants had chronic pain severe enough to merit opioid therapy, so they may not be representative of people with chronic conditions in general. They also only had access to illicit cannabis that was not part of structured pain management program.

Still, as an editorial in The Age points out: "The findings do not mean medical cannabis does not merit a place in the treatment of various other ailments."

Cannabis and cannabis-derived pharmaceuticals like Epidiolex are proving useful for managing seizures, reducing chemotherapy side effects, and treating multiple sclerosis. There may yet be other uses to be discovered. For instance, cannabis may be effective for more rare disorders. And cannabis may be a viable add-on therapy or alternative for people who cannot tolerate or do not do well with conventional therapies.

The POINT study shows that cannabis is not a panacea for pain. Instead, cannabis is a drug, and we have to treat it with the respect we give any drug if we're going to learn how to use it effectively.

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.

A Pained Life: Being Your Own Advocate

By Carol Levy, PNN Columnist

I was reading an article about a woman with cancer.  She tells how harrowing a journey it has been and all she has been through.

To help herself and her doctors, she carries to each appointment a thick medical file with all her information: doctors notes, tests results, surgeries, treatments, procedures, medications and the outcomes of them all.

“Doctors see this and they respect me,” she says. “I've learned that you have to be super organized. You have to be your own advocate.”

Good for her.

When I see a new doctor, I hand the nurse or doctor a two page printout that details my medical history. It includes all of the illnesses and procedures I have had that warrant noting (using their correct medical names), outcomes for the surgeries related to my trigeminal neuralgia, and all the medications I have tried.

I am at a new doctors' office. The nurse comes out to greet me and I hand her my printout. She takes a quick look. “Who wrote this for you?” she asks.

“I did.” Who else would have written it?

She gives me a look that says, “Yeah sure.”

I recently saw a new pain specialist. He is a psychiatrist by training, but mainly sees patients to treat their pain, not as a therapist.

During our conversation I remark, “I think the pain is oculomotor,” referring to the third cranial nerve. I never think twice about using correct medical and anatomical terms when talking with a medical person. It gives us a common language.

And yet many doctors don't seem to like it. They ask, almost confrontationally: “Why do you talk like that?”

The psychiatrist’s training (I assume) made him more circumspect. “What is your background?” he asked. “You are very familiar with medical terminology and use it easily.”

He was the first doctor to ever ask it in that manner, the only one to ask anything about my background.

Had they asked, as he did, they would have learned I worked in hospitals for years as a candy striper and ER ward clerk. In those days I had pretensions towards medical school. The hospital where I worked was a teaching hospital and many of the residents loved to teach me, even allowing me to observe surgery. It would have been hard not to pick up the lingo.

So what is the difference? Why do doctors and nurses warmly welcome the information the cancer patient tenders via her thick file, while I am looked at askance?

And it is not just me. Time and again I hear from other pain patients or read in online support groups that a doctor or nurse wanted to know why a patient knew so much about their disorder and why they can speak intelligently about it.

I know why.  I think most of us do.  Because we are not children. We want to be seen and heard, to be partners in our medical care. We need to help the medical community understand: Ignorance is not bliss. And knowledge doesn't make us suspect.

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.

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

Remembering Pain Warrior Sherri Little

By Tina Petrova, Guest Columnist

July 7, 2018 marks the third anniversary of the death of Sherri Little, a California pain patient, warrior, advocate and my friend.

Sherri was a pretty, diminutive woman with sparkling eyes who was full of life, verve and laughter -- until multiple chronic pain conditions claimed her emaciated body and tired spirit at the age of 53.

Sherri committed suicide in a Los Angeles hotel room after a last desperate attempt to get medical treatment for her severe colitis pain (See “Sherri’s Story: A Final Plea for Help”).

I would like to say that insurers, hospitals and medical professionals have evolved in their capacity to diagnose and treat chronic pain and illness since Sherri’s death. Sadly, that is not the case.

Since Sherri’s passing and the slow death of compassion in pain medicine in North America, many others have succumbed to the ravages of chronic pain. Some by failure to be helped, some by their own hand.

When will this madness end? When will doctors stop being persecuted for upholding their Hippocratic Oath by offering patients some small dignity and reduced suffering?

SHERRI LITTLE

When will pain patients gain access to the alternative health modalities that their doctors recommend? When will insurers start to pay for them and governments mandate their coverage?

Pain Warriors

As a longtime pain patient and activist, I was moved to do something for Sherri, myself and others who live in pain. After 3 long years of developing a documentary on chronic pain that was to be called "Pandemic of Denial,” I partnered with award winning filmmaker Eugene Weis.

VISIONARY MEDIA

Together, we have synthesized hundreds of hours of research, production, interviews and footage -- molding our project into a compelling, heartbreaking and status-quo shattering feature film.

The newly renamed documentary “Pain Warriors” is dedicated to Sherri and all those we've lost to pain over the last three years. We are at long last nearing the finish line and anticipate a Fall 2018 release of the film.

Pain Warriors will be distributed by Indie Can Entertainment and we hope it will be available on many platforms of exhibition, including streaming channels, film festivals, cable TV and community screenings.

No one was able to stop Sherri’s tragic ending to the disease of chronic pain. We must now look to the future with commitment, focus and clarity, and renew our ambitions to educate and inform the global community about this seemingly benign illness.  Poorly treated pain and medical neglect are not often discussed in the media, yet they have torn apart many families, shattering lives and communities in their wake.

If your group, organization or support circle would like to sponsor a community screening of Pain Warriors in your city or you simply wish to be notified of future screenings in your area, please email us at: painwarriorsmovie@gmail.com. We will get back to everyone on the screening list by email this fall.

Please visit our website for details on the film. You can also follow us on Facebook by clicking here. And you can learn more about Sherri here.  Help us help you Give Pain A Voice!

Tina Petrova is an award-winning filmmaker and co-founder of Chronic Pain TV and Give Pain A Voice.  Her production company, Visionary Media, is the Executive Producer of Pain Warriors.

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.

Doctor, Please Sign My Pain Agreement

By Jennifer Hochgesang, Guest Columnist

Doctor, I have a pain condition. It cannot be measured or quantified. You have to rely on me - the person living in my body every day for my entire life - as an indicator of how I am doing and how the treatments and medications are working. I may not respond in ways you think I should.

If it was simply blood pressure, you could take it and judge where I am on your own. Unfortunately for both of us, my condition is not that simple. A rapid pulse and high blood pressure is an indication for me that I am in a lot of pain.

I am used to being in pain all day long every day. I have a good mask and I'm especially quiet when in pain. Please, write that down. I am gabbing a lot and feeling okay today, but when I am in great pain – I will be very, very quiet and still. I may even force a smile.

We are tricky creatures, chronic pain patients, and it takes time to understand us individually. You did not pick an easy job.

Do you see where I am going with this? Yes, we need to create a bond. I will share the signs of my body with you. Will you promise to listen? I would like that very much.

At the very least, let’s agree on my pain levels. When you ask me for a number, that number should mean the same thing to both of us. These numbers are very subjective, so let me help you.

A number 3 means that I feel discomfort, but I can get on with my day and even preoccupy myself with other things. A number 7 means I am barely able to talk because that is a trigger for my facial pain from trigeminal neuralgia. When that happens, I use sign language to communicate with my daughter.

If I give a number 10, I will be in the ER and will need the doctors there to listen to me because I know the only medication that will stop the flare. I have only reached 10 three times in my life, so you will need to know what it means when I have it. I won’t be able to talk. I’ve found that IV Dilantin is the best thing for my worst flares, but I’ve had doctors unwilling to give it.

If I’m at number 11, I will be unconscious and talking to a dream doctor so I will trust you have that part covered.

Like I said, you did not pick an easy job. But, neither did I. Please don’t forget that I did not choose this. Our appointments go by so quickly and sometimes there’s isn’t enough time to ask questions. I need a little extra time to talk about side effects or a possible procedure. Can we make sure that’s possible?

You will need to get to know me. I have trigeminal neuralgia and multiple sclerosis. I am a mother with a beautiful, wonderful, kind, smart and silly 7-year old daughter.

I am disabled by pain 24/7, but want to work with you to change that so I can care for my daughter and play with her; so I can call my friends and clean my basement; so I can do my four-month old bills; and wake up and actually smile genuinely and fearlessly one day.

I promise I will sign your pain contract and follow it faithfully, but you need to sign mine as well.

Jennifer Hochgesang lives in Illinois. Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

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.

I Am Not an Addict or a Criminal

By Emily Blankenship, Guest Columnist

I was healthy and rarely even took an aspirin until a bad car accident when I was 33 years old. I am now 60.

I have not had one day or moment without pain since the accident, but I’ve had many different doctors. All of them told me they will not prescribe pain meds strong enough to remove the pain completely. They would only give me something to lessen the pain so that I could function.

But I can't function! 

My life since the car accident has been one of horrible physical and emotional pain, lots of doctor visits, depression, and lots of pills. I now have fibromyalgia, diabetes, arthritis, and a long list of other medical conditions. I take 20 different pills and get 2 injections daily. 

I have been practically on my knees, crying and begging doctors for pain relief. I’ve also been in a hospital psych ward 5 or 6 times because I was suicidal. The doctors would still not help me.

They tell me to lose weight, walk for exercise, move more, try yoga, meditate, etc.  All of that is hard to do when you are in so much pain you can't get out of bed! 

I lost my regular life after the accident. Friends disappeared. I could not work. I can no longer do activities that I loved, like bowling, cross stitching and photography, because my hands shake too bad. I am isolated and depressed.

EMILY BLANKENSHIP

My current doctor recently cut down my pain meds from 6 pills a day down to 3 pills. And now I must have my blood drawn for drug tests before the doctor will write a prescription for a refill. Crazy!  I am NOT an addict and NOT a criminal. I just want relief.

My doctor will only write pain med prescriptions for a 28-day supply, even though there are 30 or 31 days in a month. I run out of pain pills the last week of every month. No one should have to live this way. I am also required to have a doctor’s appointment every 2 months to talk about my pain before he will renew my prescriptions.

My experiences have led me to believe that the doctors do not believe chronic pain patients when we tell them we are in pain. Winter is the worst time for me. My pain levels are generally 8 or 9 in winter, even when I’m on pain meds. Summer is my best time, the pain levels can drop to a 3 or 4.

Yet even if I log all my daily pain levels and show it to my doctors, they act like I was just having a bad day.  One doctor actually said that to my face! 

My last three doctors made me sign a pain contract stating that if I ever go to another doctor and try to get pain meds that I will be dropped as a patient.  Scary thought. I have never done anything like that and have no intention of doing that, but the fact I had to sign a contract made me feel like a criminal or an addict.

I am in control of my actions. I am not an addict who will do anything for pills.

Emily Blankenship lives in Oregon.

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.

Lyrica and Neurontin Ineffective for Low Back Pain

By Pat Anson, Editor

Lyrica, Neurontin and other anti-convulsant drugs are ineffective for treating low back pain and may even be harmful to patients, according to a new study published in the Canadian Medical Association Journal.

Prescriptions for anti-convulsant drugs have soared in recent years, as doctors seek “safer” alternatives to opioid pain medication.  Lyrica (pregabalin) and Neurontin (gabapentin) belong to a class of anti-convulsant nerve medications known as gabapentinoids. They are primarily used for treating nerve pain and fibromyalgia, but are increasingly being prescribed off-label to treat lower back and neck pain.

Australian researchers reviewed 9 placebo-controlled randomized trials and found high quality evidence that gabapentinoids did not reduce back pain or disability and often had side effects such as drowsiness, dizziness and nausea.

“The take-home message is that anti-convulsants are not effective and can lead to adverse effects in people with low back pain and radiating leg pain (eg, sciatica), so they should not be recommended to this patient population,” lead author Oliver Enke, MD, a researcher at the University of Sydney Medical School, told Helio Family Medicine.

Low back pain is the world’s leading cause of disability. Guidelines for treating low back pain usually recommend physical therapy, exercise and non-opioid pain relievers rather than stronger analgesics such as opioids or anti-convulsants.

A 2017 study published in PLOS Medicine also warned that pregabalin and gabapentin were ineffective for low back pain and have a “significant risk of adverse effects.” 

PNN readers often complain about side effects from Lyrica and Neurontin.

“I have used both medicines and neither help with lower back pain for me,” said Sheri. “I will say the mental confusion and memory loss on Lyrica is very real, but it takes a slight edge of pain away in my body as a whole from the fibromyalgia.”

“I can vouch that Lyrica does not help with back pain,” said Debra. “It helped with the nerve pain but I thought I was literally losing my mind. I couldn't remember simple words or synonyms for words.”

“I've been taking gabapentin for almost six months; it has helped my peripheral neuropathy, but I still suffer every day from arthritis in every joint of my body, including my lower back,” another reader wrote.

Lyrica and Neurontin are both made by Pfizer and are two of the company’s top selling drugs, generating billions of dollars in sales annually. Lyrica is approved by the FDA to treat diabetic nerve pain, fibromyalgia, post-herpetic neuralgia caused by shingles, and spinal cord injuries.

Neurontin is approved by the FDA to treat epilepsy and neuropathic pain caused by shingles, but is also widely prescribed off-label to treat depression, ADHD, migraine, fibromyalgia and bipolar disorder. According to one estimate, over 90% of Neurontin sales are for off-label uses. About 68 million prescriptions were written for gabapentin in the U.S. last year, compared to 44 million in in 2013.

There have been increasing reports of gabapentinoids being abused by drug addicts, who have learned they can use the medications to heighten the high from heroin, marijuana, cocaine and other substances. Gabapentin is not currently scheduled as a controlled substance by the DEA, while pregabalin is classified as a Schedule V controlled substance, meaning it has a low potential for addiction and abuse.  

OxyContin, Heroin and the Opioid Crisis

By Roger Chriss, PNN Columnist

The roles of heroin and OxyContin in the opioid crisis are frequently mischaracterized and misunderstood. Such is the case with a recent op/ed in The Washington Post.

“In the 1990s, when the industry began aggressively marketing prescription opioids such as OxyContin, heroin was a minimal presence in American life," wrote Keith Humphreys, PhD, a professor of psychiatry at Stanford University

This is an unfortunate and common error about the role of heroin in the opioid crisis. Humphreys is repeating what many politicians and policymakers have also claimed. It’s important to correct this error because otherwise we will misunderstand how to treat heroin addiction, what our options are for pain management, and how to create sound policies to address the opioid crisis.

In fact, the U.S. has long had a major problem with heroin. Mexican black tar heroin arrived decades before OxyContin, and opioid addiction is usually a result of recreational use starting during adolescence, with addiction due to medical care being uncommon.

According to the book “Dark Paradise” by historian David Courtwright, researchers estimated the number of heroin addicts in the U.S. during the 1990s at a half million or more, about the same level as in the mid-1970s. This is also close to the 626,000 heroin addicts that the National Institute of Drug Abuse estimates for 2016.

Fatal overdoses involving Mexican black tar heroin were increasing even before OxyContin was introduced by Purdue Pharma in 1996. Sam Quinones notes in “Dreamland” that Oregon’s Multnomah County had only 10 heroin overdose deaths in 1991, about the time Mexican drug dealers arrived in Portland, but by 1999 there were 111 heroin overdoses.

So the idea that “heroin was a minimal presence in American life” isn’t supported by data. Neither is the claim that heroin traffickers “set up shop in the areas of the United States with the highest prevalence of prescription opioid addiction.”

According to Quinones, the Mexican drug gang the “Xalisco Boys” went into communities that were not a part of the established drug trade and were not subject to turf wars or other forms of gang violence. They wanted to fly below the radar, to avoid detection by law enforcement, and deliberately avoided carrying guns, driving fancy cars, or living large.
So the Xalisco Boys went to smaller cities like Portland and rural communities like Appalachia that were specifically chosen because they were low risk. And they were there well before 1996 and the advent of OxyContin.

Humphreys makes an additional error with his claim that about 80 percent of Americans who became heroin addicts started out with prescription opioids, according to an assessment from the National Institutes of Health. The 80% statistic varies significantly with time and place. As I wrote in a previous column,  non-medical use of opioid medication was found in 50% of young adult heroin users in Ohio, in 86% of heroin users in New York and Los Angeles, and in 40%, 39%, and 70% of heroin users in San Diego, Seattle, and New York respectively.

It's also important to note that “prescription opioids” does not necessarily mean prescribed opioids. Many addicts don't have a prescription and steal, buy or borrow pain medication. The National Institute on Drug Abuse estimates that about 10 percent of patients legally prescribed opioids develop an opioid use disorder. And only about 5 percent of those who misuse their medication transition to heroin.

There is also a disturbing new trend in heroin use. A study in JAMA Psychiatry last year found that about one-third of heroin users had no prior experience with any opioid, prescription or otherwise. Heroin users often have extensive prior drug use with a variety of different substances, along with a history of severe childhood trauma or mental illness.

Humphreys’ claim that the “heroin-addicted were transfers from prescription opioids” ignores another route on the path to opioid addiction. In “Drug Dealer, MD,” Stanford psychiatrist Anna Lembke says some drug addicts switched from heroin to prescription opioids in the late 1990s and early 2000s because of the increased availability of the latter.

None of this is meant to exonerate OxyContin or Purdue Pharma. Barry Meier’s recent book “Pain Killer” does a good job of explaining the history of the company and why it is the focus of so many lawsuits. Purdue was fined over $600 million for the illegal marketing of OxyContin and important questions about the company’s actions remain to be answered.

Heroin addiction has been a major presence in American life for generations. The current opioid crisis may have been jump-started with prescription drugs, but heroin came long before OxyContin. It is better to view OxyContin as gasoline tossed on a smoldering fire, rather than blame OxyContin for heroin. The crisis is more complicated and pervasive than that.

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.

FDA Ends Probe into Kratom Salmonella Link

By Pat Anson, Editor

The Food and Drug Administration has ended its investigation of a small salmonella outbreak linked to kratom – but not without taking some parting shots at the herbal supplement used by millions of Americans to treat chronic pain, addiction, depression and other conditions.

“It appears the salmonella problem with kratom uncovered earlier this year has probably been occurring for some time and is ongoing. We have closed our outbreak investigation, concluding that anyone consuming kratom may be placing themselves at a significant risk of being exposed to salmonella,” said FDA commissioner Scott Gottlieb, MD, and Stephen Ostroff, MD, FDA Deputy Commissioner for Foods and Veterinary Medicine, in a lengthy joint statement.

The FDA ended its investigation five weeks after the Centers for Disease Control and Prevention wrapped up its own probe of the salmonella outbreak that sickened 199 people in 41 states. The CDC investigation began in February of this year, but salmonella illnesses linked to kratom were traced back as far as January 2017.

No single source of the outbreak was ever identified, but kratom was considered the “likely source.” A little over half of the 81 kratom samples that were analyzed tested positive for strains of salmonella bacteria.

“This means that users of these products had essentially a one in two chance of being exposed to this pathogen,” Gottlieb and Ostroff said. “The more than 50 percent contamination rate is stunningly high. It represents a level rarely seen in outbreak investigations of this nature. It shows that a high proportion of kratom being shipped into the United States may be contaminated with salmonella.”

Kratom comes from the leaves of a tree that grows in southeast Asia, where it has been used for centuries as a natural pain reliever and stimulant, particularly in rural areas of Indonesia and Thailand.  

“In these locations, the plant is being grown, harvested and processed in problematic conditions that readily create the circumstance for widespread contamination with foodborne pathogens. Although some of the kratom is further processed once in the United States into capsules, powders or herbal remedies, based on our findings, these procedures do not appear to be eliminating microbial contamination,” wrote Gottlieb and Ostroff.

In recent years, millions of Americans have discovered kratom and started buying it online or in convenience stores and “head shops.” But not until this year did federal health officials show any concern that kratom products were contaminated with salmonella bacteria. Their primary focus was that kratom was being marketed as an unapproved medical treatment, particularly for pain and addiction.

The FDA has even started calling kratom an addictive “opioid,” when in reality its active ingredients are mitragynine and 7-hydroxymitragynine, two alkaloids that are believed to act on opioid receptors in the brain. Earlier this year, the FDA released a computer analysis that found kratom contains over two dozen opioid-like substances – a report that critics say was biased and amounted to “junk science.”

Over a dozen kratom products were recalled during the FDA and CDC salmonella investigations. Salmonella is a bacterial infection usually spread through contaminated food or water. Most people who become infected develop diarrhea, fever and stomach cramps. Severe cases can result in death.

There have been several other salmonella outbreaks this year, including infections linked to melons, raw sprouts, dried and shredded coconut, live poultry, chicken salad, pet guinea pigs, and Kellogg’s Honey Smacks cereal.

Opioid Medication Made My Chronic Pain Worse

By Robert Gripp, Guest Columnist

After 18 years of largely untreatable chronic pain, I found myself with an intrathecal pain pump delivering huge quantities of fentanyl to my spine every day. And I was still in debilitating pain.

I was on my second pain pump (they have to be replaced about every seven years) when the pump began to act up and I started into withdrawal. I immediately saw my new doctor, who had taken over my care when my original doctor retired at age 75.

He had the pump manufacturer’s representative there to help figure out what was going on. It turned out the pump was unreliable, and the doctor recommended it be powered off. I was sent home with minimal meds to detox.

Detox was the absolute most horrible experience I have ever encountered, but at the end I was virtually pain free. The reason was that I had developed opioid-induced hyperalgesia (OIH), which increased my sensitivity to pain.

ROBERT GRIPP

OIH is a well-documented syndrome, but my doctors had missed the hallmark signs of it, which are changes in the location and characteristics of your pain, as well as little or no relief from pain when the dosage is increased.

I am now 63 years old and have a new life. I have some pain, but nothing that is not well controlled with little or no opioids.

I do not believe that all patients who take high doses of opioids experience hyperalgesia, nor does the literature support any such conclusion. My purpose is to caution anyone on high doses for an extended period. If it is not helping you or your pain is worse after increasing the dosage, you should be aware of this condition and its potential.

Overzealous lawmakers and over-reaching insurance companies who want to limit opioids due to the addiction crisis don’t have a clue. Limiting opioids is making it harder for pain patients who really need them. But my experience is also something that needs to be better understood and the condition of hyperalgesia needs to be more publicized.

Our tendency is to believe more pain medicine is better when our pain worsens. I have to wonder how many people are out there in tremendous pain being caused by the very medicine given them to abate it. I am afraid it is way too many.

I hope my story helps someone get a new life, without having to stumble onto it as I did.

Robert Gripp lives in Texas.

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.

Migraine Costly to Workers and Employers

By Steve Weakley

Most employees who suffer from chronic migraine headaches miss nearly a full week of work (4.6 days) due to migraines each month, according to a large new online survey.

Amgen and Novartis surveyed over 11,000 migraine sufferers in 31 countries to demonstrate how painful and costly the condition can be for both workers and employers.  The My Migraine Voice survey included people who had four or more migraine days a month.

Eighty percent of the survey takers in the U.S. said their employers knew about their migraines, but only 21 percent said their bosses offered support and understanding. Nearly two-thirds (63%) said migraines impaired their work performance and many felt judged by co-workers as a result.

"From being afraid to speak up about their disease at work in fear of losing their jobs, to feeling judged by colleagues, the stigma around migraine in the workplace is an ongoing issue that the migraine community faces daily," said Mary Franklin, executive director of the National Headache Foundation, in a press release.

"The findings from the My Migraine Voice survey shed light on the true impact of migraine at work, and showcase the urgent need for employers and employees to change the dialogue around migraine."

According to one estimate, U.S. employers lose about $11 billion a year in missed work and lost productivity because of migraines.

Amgen and Novartis presented the survey findings at the 60th annual meeting of the American Headache Society in San Francisco, to help stir up interest in their new injectable migraine drug, Aimovig (erenumab). The FDA recently approved the monthly self-injected drug for the prevention of migraine in adults.

Aimovig uses human antibodies to target brain receptors that are thought to trigger migraines. Three clinical trials demonstrated that the drug reduced the number of migraine days for sufferers by an average of 2.5 days per month.

One obstacle in getting people to try Aimovig is its price. Amgen say the drug will cost about $6,900 a year, or $575 for each monthly dose. Amgen holds the sales rights for Aimovig in the United States, Canada and Japan, while Novartis will sell the drug in Europe and the rest of the world.

Amgen is offering a migraine management program to several large U.S. employers. The program consists of an educational program as well as a research study to document the impact of migraine on worker absenteeism, presenteeism, healthcare utilization and costs. The wellness portion of the program includes webinars, email and website tips, and a  mobile app to track migraine symptoms.

CDC Head Wants Opioid Guidelines for Acute Pain

By Pat Anson, Editor

When Dr. Robert Redfield was appointed as director of the Centers for Disease Control and Prevention in March, he told CDC staff the opioid epidemic was “the public health crisis of our time” and pledged to “bring this epidemic to its knees.”

After three months in the job, Redfield has finally given his first media interview and provided some vague details about how he will tackle the opioid crisis. He told The Wall Street Journal that the CDC would develop opioid prescribing guidelines for short-term acute pain and use a new enhanced data system to track overdoses in hospital emergency rooms.

“We’re going to continue to expand our efforts,” Redfield said. “We’re going to be able to track this epidemic in real time, which I think is really important to be able to respond.”

The CDC has been roundly criticized in the past for how it tracked and counted opioid overdoses – erroneously mixing illicit fentanyl deaths with those linked to prescription opioids – so any improvement in that area is welcome.

DR. ROBERT REDFIELD.

But for the agency to even consider prescribing guidelines for acute pain is puzzling – considering how disastrous its guidelines have been for chronic pain. Since their botched release during a sketchy webinar in 2015, the CDC’s “voluntary” guidelines for primary care physicians have been widely adopted as mandatory by insurers, regulators and providers – who have used them to deny treatment, abandon patients, and forcibly taper many off opioid prescriptions. The DEA even targets physicians who exceed the CDC's recommended dosage for opioids. 

“I was forced tapered. How could the CDC take over my medical treatment? How is this legal? The CDC had never assessed me yet changed my pain medicine,” PNN reader Patti asks.  “I've gone from being an active woman to spending my days in bed or on the couch. I live in non-stop pain 24/7.”

Patti is not alone. In a PNN survey of over 3,100 patients last year, over 90% said the CDC guidelines have been harmful to patients and nearly half said it was harder for them to find a doctor willing to treat their pain. Ten percent don't have a doctor at all.

There are also troubling reports of patients committing suicide because their pain is so poorly treated.

"My son committed suicide 4 months after his docs took him off all pain meds," said Rick. "I knew right then the reason for his suicide. But, it goes unrecognized by doctors and other officials, and his suicide autopsy mentioned nothing about pain meds. This will continue, suicides vastly increased until post medicinal suicides (are) recognized and accounted for."

"My 70 year old mother committed suicide last month after being cut off at pain management. Although she could barely walk and was in constant pain, she was the most positive person. Something needs to be done," said Janie Jacobs.

“Wishing for it to be over is a pervasive daily thought. I have to work diligently to chase those thoughts away,” pain patient Leanne Gooch wrote in a recent guest column for PNN. “My doctors can’t or won’t treat me because my chronic pain contributed to all the addicts all over the world. I’ll admit that’s a ridiculous statement when they admit they’ve gone too far in denying me proper medical care.”   

The quality of pain care in the U.S. has gotten so bad that Human Rights Watch launched an investigation into the treatment of pain patients as a possible human rights violation.

“What kind of quality of life do I even have when I can barely move?” asks Amy, who suffers from myofascial pain and is confined to a wheelchair.  “I really want to lead a functional life and to have a family. It's not a lot to ask. I'll never have it this way, though. Please give me back some tramadol. Please allow me hydrocodone if I really need it. Please help me. Please help all of us.”

The CDC guidelines have also failed to achieve a key objective. While opioid prescribing has declined (a trend that began years before the guidelines were released), opioid overdoses have spiked higher, driven by a scourge of illegal opioids sold on the black market. Americans are now more likely to die from an overdose of illicit fentanyl than they are from pain medication.

Several states and insurers have already adopted regulations limiting the initial use of opioids for acute pain to a few days supply. The CDC has weighed in on the issue as well.

"When opioids are used for acute pain, clinicians should prescribe the lowest effective dose of immediate-release opioids and should prescribe no greater quantity than needed for the expected duration of pain severe enough to require opioids. Three days or less will often be sufficient; more than seven days will rarely be needed," the agency says in its chronic pain guidelines. 

According to a spokesperson, the CDC was working with the Agency for Healthcare Research and Quality (AHRQ) to develop a report reviewing the effectiveness of opioid and non-opioid therapies for acute pain.

"If an update to the CDC Guideline is warranted based on the scientific findings of these AHRQ efforts, CDC will undertake the scientific process to update the guideline, possibly including expanded guidance treating acute pain," Courtney Leland told PNN in an email.

Why does Dr. Redfield want to develop guidelines for acute pain? In his interview with The Wall Street Journal,  Redfield said his interest stems, in part, from a close family member’s struggle with opioid addiction.

“I think part of my understanding of the epidemic has come from seeing it not just as a public-health person and not just as a doctor,” he said. “It is something that has impacted me also at a personal level.”

The epidemic is also impacting chronic pain patients, in ways the CDC has yet to admit or acknowledge.

Doctors Won’t Treat My Chronic Pain

By Leanne Gooch, Guest Columnist

I have never been addicted to anything.

I feel the need to preface any conversation about my chronic pain with that statement. I have degeneration in my neck, arthritis, spinal stenosis, failed back surgery syndrome, and some other names that have been thrown into my medical charts. 

A layperson without chronic pain would wonder why I feel the need to document every boring detail of my health history. It’s because I’ve had to explain every minute detail to each and every provider I’ve seen. For 20 years!  

Initially, when my pain started, I had a good primary care doctor who tried hard to find and treat the cause. He prescribed pain medications and sent me to many specialists. But after injections, physical therapy, rehabilitation, etc., he became the first in a long line of doctors who would not treat me as a pain patient. 

I wasn’t considered “chronic” until the 10th year. I learned during that time that women are viewed by the medical profession as weak for reporting their pain. I have seen the faces of both men (doctors) and women (nurses) who judged my pain story as being overly dramatic and embellished.  

I was eventually sent to a hotshot, top-of-his-game neurosurgeon. He said I had degeneration in my spine that they would normally see in elderly patients, 60 or 70 years of age. I was told a surgery would fix me all up. They would cut, put some donor bone in, some screws to hold it all together, and that constant aching pain would be gone!

I signed on the dotted line. I was only 25 years old. Of course, now we know those surgeries are a very bad idea, especially for someone so young, because even if they’re effective in the short term, all that hardware eventually leads to further degeneration with age. 

I had a spinal fusion, was patted on the head and sent my way. In follow-up exams with the surgeon, I was told everything was perfect and that my pain would subside when I healed. “Go live your life,” he said.

LEANNE GOOCH

Yeah, not so much. I spent the next four years in even more pain and was dismissed by no less than six doctors, who claimed that because my x-rays showed everything was fine, I must be fine. I didn’t need further treatment. I didn’t need pain medication. There’s no way I could be in the pain I claimed to be in. 

Eventually, I got in with another hotshot surgeon, but this time it was at a hotshot hospital! They finally unearthed the fact that my fusion never did fuse. I had another surgery, but there were complications. They said my body rejected the donor bone. The bone would have to come from me, from my hip. They would need to cut the front and back of my neck, and my hip. They’d also put in more screws, metal plates and a metal bracket. 

The second surgery was not successful in ridding me of any pain. 

I was back on the merry-go-round of trying to find another doctor. In the interim, I’d gain and lose jobs due to whatever had taken up residence in my once amazingly functional body. I’d gain and lose medical insurance as well. Needless to say, I also went into deep and terrifying medical debt, while also being denied pain treatment. I was ineligible for individual policies because I had a pre-existing condition. 

I was forced into taking antidepressants when I didn’t need them. I wasn’t depressed, I was in pain. I was also forced to undergo counseling twice; both times I was dismissed after one visit because it wasn’t a mental issue I was dealing with. I was too embarrassed to properly express my pain levels. Forced to downplay how desperate I was for pain relief. 

I was even turned away by receptionists, who flatly and rudely said, “We don’t see or treat pain patients.”

That’s a short synopsis of why I am where I am 20 years later, essentially bedridden. The pain doesn’t allow for restful sleep. I can feel my health disappearing. I now have weight issues from hypothyroidism, no appetite most of the time, insomnia that doctors won’t treat, and very high blood pressure. 

After 18 years, I finally got to a pain clinic, as they call them now. The doctor has two physician assistants, one who believes everyone is a drug addict and one who wants to do a good job, but whose hands are tied by government guidelines and overreach. 

I am under-treated by a long shot, yet I am harassed by the pharmacist every single month. I use one pharmacy and one doctor, but still run into denial or delay getting a prescription filled. I had to explain and essentially beg the pharmacist to get a small script filled after my most recent invasive surgery for a spinal cord stimulator. 

Four months later, I’m still in tremendous pain and have a nearly constant tremor in my right arm. The stimulator seems to hit on a nerve and my muscles seize up, the pain rising to levels that I didn’t know a human could withstand. It’s awful. It’s painful. And I am under-medicated because of criminals I never had a thing to do with. 

I have been told that my pain will never get better and can never be cured. It will only get worse as the degeneration continues. Wishing for it to be over is a pervasive daily thought. I have to work diligently to chase those thoughts away, so as not to fall prey to giving up.

My doctors can’t or won’t treat me because my chronic pain contributed to all the addicts all over the world. I’ll admit that’s a ridiculous statement when they admit they’ve gone too far in denying me proper medical care. 

I am 43 years old.

Leanne Gooch lives in Missouri.

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.

Over 600 Arrested in Healthcare Fraud Sweep

By Pat Anson, Editor

Over 600 doctors, nurses, pharmacists and other medical providers have been arrested in what the U.S. Justice Department is calling its largest healthcare fraud investigation.

Most of the charges involve false claims for opioid prescriptions or addiction treatment that resulted in $2 billion in fraudulent billings to Medicare, Medicaid and other health insurers. Many of the arrests occurred weeks or months ago, and were apparently lumped together by federal agencies to make the crackdown on healthcare fraud appear to be the "largest ever." 

“This is the most fraud, the most defendants, and the most doctors ever charged in a single operation -- and we have evidence that our ongoing work has stopped or prevented billions of dollars’ worth of fraud,” said Attorney General Jeff Sessions.

Federal officials also announced that they have excluded 2,700 individuals from participating in Medicare, Medicaid and other federal health programs, including 587 providers excluded for conduct related to opioid diversion and abuse. 

“Health care fraud is a betrayal of vulnerable patients, and often it is theft from the taxpayer,” said Sessions.  “In many cases, doctors, nurses, and pharmacists take advantage of people suffering from drug addiction in order to line their pockets. These are despicable crimes.”

A $106 million scheme uncovered in Florida alleged there was widespread fraudulent urine drug testing at a substance abuse treatment center. The owner, medical director and two employees at the sober living facility allegedly recruited patients and paid kickbacks to them for participating in bogus drug tests.

In California, an attorney at a compounding pharmacy allegedly paid kickbacks and offered incentives such as prostitutes and expensive meals to two podiatrists in exchange for bogus prescriptions written on pre-printed prescription pads. Once the fraudulent prescriptions were filled, about $250 million in false claims were submitted to federal, state and private insurers.

In Texas, a pharmacy chain owner, managing partner and lead pharmacist were accused of using fraudulent prescriptions to fill bulk orders for over one million hydrocodone and oxycodone pills, which the pharmacy then sold to drug couriers for millions of dollars. 

“Healthcare fraud touches every corner of the United States and not only costs taxpayers money, but also can have deadly consequences,” said FBI Deputy Director David Bowdich.  “Through investigations across the country, we have seen medical professionals putting greed above their patients’ well-being and trusted doctors fanning the flames of the opioid crisis.”

Since becoming Attorney General, Sessions has shown a particular interest in opioid prescriptions -- once urging pain patients to “tough it out” and take aspirin instead.

Last August, Sessions ordered the formation of a new data analysis team, the Opioid Fraud and Abuse Detection Unit, to focus solely on opioid-related health care fraud.  Five months later, Sessions launched a Justice Department task force targeting manufacturers and distributors of opioid medication, as well as physicians and pharmacies engaged in the “unlawful” prescribing of opioids.

As PNN has reported, the data mining of opioid prescriptions -- without examining the full context of who the medications were written for or why – can be problematic. Last year the DEA raided the offices of Dr. Forest Tennant, a prominent California pain physician, because he had “very suspicious prescribing patterns.” Tennant only treated intractable pain patients, many from out-of-state, and often prescribed high doses of opioids to patients because of their chronically poor health -- important facts that were omitted or ignored by DEA investigators. Tennant has not been charged with a crime, but announced plans to retire after the DEA raid.

Sessions has also proposed a new rule that would allow the DEA to punish drug makers if their painkillers are diverted or abused. If approved, the agency could reduce the amount of opioids a company would be allowed to produce, even if the drug maker had no direct role in the diversion.

Most overdoses are not linked to opioid pain medication, but are more likely associated with illicit fentanyl, heroin, anti-anxiety drugs or antidepressants.

Suspension of Dr. Ibsen's Medical License Reversed

By Pat Anson, Editor

A Montana district court judge has reversed the suspension of Dr. Mark Ibsen's medical license, ruling that the state medical board made numerous errors when it suspended Ibsen’s license in 2016 for allegedly overprescribing pain medication.

Judge James Reynolds said the Montana Medical Board violated Ibsen’s right to due process by failing to allow expert witnesses to testify in his defense during board hearings. The board also rejected the findings of its own hearing examiner, who said Ibsen’s standard of patient care was sufficient.

“It is analogous to the selection of a jury in a civil case and then when the verdict comes in against a party, that party asking for the selection of another jury. Except in this case, it is even more striking because it is the agency who selected the hearing examiner,” Judge Reynolds ruled.

“They screwed up,” Ibsen attorney John Doubek told the Independent Record. “I think it’s a pretty sharp rebuke to a decision that was totally off-base.

“The sad thing is my client has been under their thumb now for two years. He can’t move his practice because he has this black mark against his reputation and against his license, so he’s been unable to practice medicine and this guy is a good doctor.”

DR. MARK IBSEN

Ibsen first came under investigation in 2013, when he was accused of over-prescribing opioid medication by a disgruntled former employee at his Helena medical clinic.

“I’m a little stunned that it happened,” Ibsen said of the judge’s decision. “I’m mostly angry. It could have been resolved in 10 minutes, instead of five years.”  

Although the suspension of Ibsen’s license was stayed while he appealed the board’s ruling, his professional reputation was so damaged that pharmacists refused to fill his prescriptions and he was forced to close his clinic. Ibsen’s former patients also suffered. He says three committed suicide (including the recent death of Jennifer Adams) and three others died of causes likely related to the stress of their pain not being treated. Montana has the highest suicide rate in the country.

Ibsen told PNN that Montana has become a virtual “wasteland” for pain care, because many of the state’s doctors fear being prosecuted or losing their licenses for prescribing opioids.  Several of Ibsen's patients were former patients of Dr. Chris Christensen, a Ravalli county physician convicted of negligent homicide after two of his patients died from overdoses.

“There was a clear time there I was crying for help. I was just inundated by these pain patients that my colleagues weren’t dealing with. And I was just sort of shocked at the cruelty of the way I was treated and the cruelty of the way pain patients were being treated,” he said. “I’ve got a lot of compassion for people who don’t feel like they belong in the medical model. I’ve been shunned. They’ve been shunned.”

And after five years of legal battles, the only drug Ibsen will prescribe now is medical marijuana.

“It terrifies me to consider opening up a clinic again. They might come after me,” Ibsen said. “Things could change, but I have nothing in the on-deck circle.  I don’t have anything planned. It was just not good for me to plan anything.”

Did 70,000 Opioid Deaths Go Uncounted?

Pat Anson, Editor

The nation’s overdose epidemic may be worse than it appears, according to a new study that estimates as many as 70,000 opioid-related overdose deaths since 1999 were not included in mortality figures because of incomplete reporting.

The study, which does not distinguish between deaths involving prescription opioids and those linked to illegal opioids such as heroin, adds to growing evidence that the government's overdose statistics are unreliable.

Researchers at the University of Pittsburgh Graduate School of Public Health analyzed death certificate data from 1999 to 2015 and found that coroners and medical examiners in many states often did not specify the drug that contributed to the cause of death.  

“Coroners are less likely than medical examiners to be physicians and do not necessarily have the medical training needed to complete drug information for death certificates based on toxicology reports,” said lead author Jeanine Buchanich, PhD, who reported the findings in Public Health Reports, the official journal of the Office of the U.S. Surgeon General.

"Incomplete death certificate reporting hampers the efforts of lawmakers, treatment specialists and public health officials. And the large differences we found between states in the completeness of opioid-related overdose mortality reporting makes it more difficult to identify geographic regions most at risk."

The variability among states was significant - ranging from fewer than 10 unspecified overdose deaths in Vermont to 11,152 in Pennsylvania. States with a decentralized county coroner system or a hybrid system that uses both coroners and medical examiners were more likely to have a high proportion of unspecified overdose deaths.

Overdose deaths are assigned specific "T codes" for each drug found by the coroner or medical examiner. Deaths that can’t be attributed to a specific drug are given the T-code of T50.9 – which means "unspecified drugs, medicaments and biological substances."

Researchers say the widespread use of that code underestimates the actual number of opioid-related deaths. In five states - Alabama, Indiana, Louisiana, Mississippi and Pennsylvania - more than 35 percent of the overdose deaths were coded as unspecified.

“Our analyses indicated that potentially more than 70,000 unspecified, unintentional overdose deaths in the past 17 years, including more than 5,600 in 2015, could be categorized as opioid-related unintentional overdose deaths,” said Buchanich.

Questionable Overdose Data

Last year President Trump’s opioid commission urged the federal government to work with states to improve the toxicology data on overdose deaths by developing uniform forensic drug testing.

“We do not have sufficiently accurate and systematic data from medical examiners around the country to determine overdose deaths, both in their cause and the actual number of deaths,” the commission said in its final report.

Critics also say the overdose data reported by the CDC and other federal agencies is often flawed or cherry-picked. CDC recently researchers admitted that many overdoses involving illicit fentanyl and other synthetic black market opioids were erroneously counted as prescription opioid deaths. Toxicology tests cannot distinguish between pharmaceutical fentanyl and illicit fentanyl

The overdoses data is further muddied because multiple drugs are involved in almost half of all drug overdoses. And there is no way to distinguish between deaths caused by legitimate opioid prescriptions and those caused by diverted prescriptions or counterfeit drugs.

A recent report from the Substance Abuse and Mental Health Services Administration found that drugs used to treat depression, anxiety and other mental health conditions are now involved in more overdoses than opioid pain medication.

The CDC estimates that 63,632 Americans died from drug overdoses in 2016 – a 21.5% increase over the 2015 total.