Childhood Abuse Raises Lupus Risk for Adult Women

By Pat Anson, PNN Editor

Women who experienced physical or emotional abuse as children have a significantly higher risk of developing lupus as adults, according to new research presented at the annual meeting of the American College of Rheumatology.

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease that causes inflammation in multiple organs. Most patients have times when the disease is active, followed by times when the disease is mostly quiet and in remission. Lupus is far more common in women than men.

In prior work, exposure to stress and stress-related disorders, notably post-traumatic stress disorder, has been associated with increased risk of subsequently developing autoimmune diseases, including lupus,” said lead author Candace Feldman, MD, an Assistant Professor at Brigham and Women’s Hospital/Harvard Medical School.

“Exposure to adverse childhood experiences has specifically been associated with higher levels of inflammation, as well as with changes in immune function.”

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To identify what kind of childhood trauma raises the risk of lupus, Feldman and her colleagues looked at health data for over 67,000 women participating in the Nurses’ Health Study II, an ongoing study of female nurses that began in 1989. There were 93 diagnosed cases of lupus among the women.

In detailed questionnaires, the women were asked whether and how often as children they experienced physical abuse from a family member, or yelling, screaming or insulting remarks from a family member. The women were also asked to recall incidents of sexual abuse by either adults or older children.

Researchers found that physical and emotional abuse were associated with a more than twofold greater risk of developing lupus. But the data did not reveal a statistically significant association between sexual abuse and lupus risk.

The study’s findings suggest that the effects of exposure to physical and emotional abuse during childhood may be more far-reaching than previously appreciated,” said Feldman. “The strong association observed between childhood abuse and lupus risk suggests the need for further research to understand biological and behavioral changes triggered by stress combined with other environmental exposures. In addition, physicians should consider screening their patients for experiences of childhood abuse and trauma.”

This is not the first study to find an association between childhood trauma and chronic illness in adults. A recent study of 265 adults in New York City found that those who experienced more adversity or trauma as children were more likely to have mood or sleep problems as adults -- which in turn made them more likely to have physical pain.

Another study found that children who witness domestic violence between their parents are significantly more likely to experience migraine headaches as adults. A large survey also found that nearly two-thirds of adults who suffer from migraines experienced emotional abuse as children.

Social Media Lowers Depression Risk for Pain Patients

By Pat Anson, PNN Editor

Seniors citizens who have chronic pain are significantly less likely to suffer from depression if they participate in an online social network, according to a new study.

Researchers at the University of Michigan reviewed the results of a 2011 survey of more than 3,400 Medicare patients aged 65 and older, in which respondents were asked about their depression, pain and social participation. About 17% of the seniors used an online social network in the previous month.

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Researchers found that seniors who had chronic pain were often depressed, socially isolated and less likely to participate in activities that require face-to-face interaction.

However, online social participation appeared to buffer the impact of pain on depression. Seniors in pain who did not use an online social network were twice as likely to become depressed.

“The results suggest that for those in pain, it may be possible that online social participation can compensate for reduced offline social participation, especially where it pertains to the maintenance of mental health and well-being. This is critical because the onset of pain can often lead to a ‘downward spiral’ of social isolation and depression, resulting in adverse outcomes for the health of older adults,” wrote lead author Shannon Ang, a doctoral candidate at the U-M Department of Sociology and Institute for Social Research.

“Online social participation serves as a way to possibly arrest the development of pain toward depression through this pathway, by ensuring that older adults remain socially connected despite the presence of pain.”

Social media may also preserve cognitive function and psychological well-being in the elderly, researchers said. The findings are significant in an aging society where social isolation and loneliness are key determinants of well-being.

"Our results may be possibly extended to other forms of conditions (e.g., chronic illnesses, functional limitations) that, like pain, also restrict physical activity outside of the home," Ang said.

The survey data did not identify what types of social media – such as Facebook or Twitter – were more effective in warding off depression and social isolation.

The study was published in the Journals of Gerontology.

Pain Researchers Say Let Sleeping Dogs Lie

By Pat Anson, PNN Editor

Most people with chronic pain recognize the importance of good sleeping habits. A night spent tossing and turning can mean a day full of aches and pains.

For that reason, dog lovers are often told they shouldn’t sleep with their pet. One survey of pet owners found that over half said their dogs tend to wake them at least once during the night. Sleeping with a pet can also be unsanitary and lead to behavioral problems.   

"Typically, people who have pain also have a lot of sleep problems, so usually if they ask their healthcare provider about a pet, they're told to get the pet out of the bedroom. But that standard advice can actually be damaging," says Cary Brown, PhD, a Professor of Rehabilitation Medicine at the University of Alberta.

Brown is co-author of a small study, published in the journal of Social Sciences, in which seven chronic pain patients who slept with their dogs were asked about their pets’ impact on their sleep. Brown said the response was "overwhelmingly positive."

"They liked the physical contact with their dogs—cuddling before bed, and how it distracted them from feeling anxious about being alone at night. They felt more relaxed and safer, so they weren't anxious as they were trying to sleep," said Brown.

"A sense of relaxation and caring are emotions that release positive hormones in our bodies that will help us sleep better."

Having our pets sleep with us can also help ward off loneliness. A dog can take on a significant role for the chronically ill when friends drift away and social circles shrink.

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“I’ve got my buddy and I’ve got my companion hanging out with me and I don’t get that loneliness,” one patient said.

“I always have got somebody to cuddle and make me feel loved when I am lonely and in pain and when I am trying to sleep,” said another.

Researchers say doctors need to have deeper conversations with their patients before suggesting that a pet sleep somewhere else.

"When you ask people to remove an animal they are in the habit of co-sleeping with, it could have consequences the health-care provider hasn't considered," Brown said. "For some people with chronic pain, their relationship with their pet could be the only one they have and the comfort that dog or cat produces would be lost."

For some patients, it’s also a reciprocal relationship. They try to help their dogs sleep and comfort them when they have pain.

“She [the dog] has days when she experiences lots of pain, I make myself get down on the floor at her level …. I will sit with her and talk with her and very softly, very calmly, I make a point of massaging her ever so gently,” one woman said. “I find this brings down her heart rate, she’s not in pain, the pain is starting to go down. I can physically see the changes in her and eventually she nods off to sleep.”

Although dogs have been living with people for thousands of years – and often sleeping with them – surprisingly little is known about the emotional and physical benefits of sharing a bed.

“This small study shines a light on this important and yet neglected area of research. It reveals that for these participants their dog appears to enhance their sleep in many ways. Further research is warranted to explore more fully the ways in which pet dogs influence sleep for people with chronic pain,” said Brown.

Should Roseanne Have Died From an Opioid Overdose?

By Pat Anson, PNN Editor

Roseanne Barr is the latest victim of America's opioid crisis. Or to be more precise, Roseanne Conner is.

The fictional matriarch of ABC’s cancelled “Roseanne” show was killed off in the opening episode of “The Conners” Tuesday night, with her family struggling to come to terms with her death. What was initially thought to be a fatal heart attack turns out to be an accidental overdose of prescription opioids.

TV audiences had last seen Roseanne Conner hiding her addiction to opioid painkillers while waiting for long-delayed and costly knee surgery. But that storyline ended when Roseanne Barr was fired by ABC for a racist tweet and the network had to come up with a way to explain her absence.

“We firmly decided against anything cowardly or far-fetched, anything that would make the fierce matriarch of the Conners seem pathetic or debased,” Executive Producer Bruce Helford explained in The Hollywood Reporter.

“I wanted a respectful sendoff for her, too: one that was relevant and could inspire discussion for the greater good about the American working class, whose authentic problems are often ignored by broadcast television.”

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"I AIN'T DEAD BITCHES," Barr tweeted after watching the show. She followed up with a longer joint statement with her spiritual advisor, Rabbi Shmuley Boteach.

“We regret that ABC chose to cancel 'Roseanne' by killing off the Roseanne Conner character,” the statement said. "That it was done through an opioid overdose lent an unnecessary grim and morbid dimension to an otherwise happy family show.”

It was also a bit of a cliché. The popular perception that most opioid overdoses are due to prescription painkillers is now largely a myth.  According to the Centers for Disease Control and Prevention, nearly 49,000 Americans died from opioid overdoses in 2017, but over half of them were due to illicit fentanyl and heroin, not prescription opioids.

A more accurate way to depict Roseanne’s death would have been through an overdose of heroin or counterfeit painkillers laced with fentanyl. That’s how thousands of Americans are dying. Roseanne Conner could have even been driven to suicide by untreated pain. Imagine what an eye-opening show that would have been.

Instead, the Conner family discovers that Roseanne was hiding painkillers all over the house and sharing them with a group of friends, all of them struggling with pain and addiction. The show makes it appear like opioid medication is easy to obtain, something real pain patients know is no longer true.

The only thing missing from the hackneyed script was someone saying, “If only Roseanne had tried yoga and taken Tylenol, she’d still be alive!”

Executive producer Bruce Rasmussen told Variety last week they thought carefully about how to end Roseanne's character. "You don't want to be flip about how you do this," said Rasmussen.

But that’s exactly how it came across to some PNN readers.

“The media can't seem to get the other side of the story out, nor can they print the truth about exactly how many deaths are the result of PRESCRIPTION opiates,” wrote Stephen Johnston.  “Now millions of folks will be watching as more gas is poured onto the fire. That same fire that's burning up what's left of people like myself and millions of others for whom opiate pain medications are the only relief from whatever traumatic accident or terrible malady has befallen them.”

“It was bad enough when they made pain meds a focus of the rebooted show when the first episode of the show's return aired. Now we have the added stigma, as intractable pain people, of them choosing to have Roseanne die from opioid misuse,” said Jack.

“Don't give the writers, actors, producer, the network hacks, etc., anything that isn't OTC when they have occasion to need pain relief — chronic or acute. Tylenol 3's would be much too generous, as many of us don't even get those.”

You can watch the first episode of “The Conners” by clicking here.

UK and Canada Legalizing Cannabis

By Pat Anson, PNN Editor

There’s a lot of hype this week about Canada becoming the second and largest country to legalize recreational marijuana. The first was Uruguay.

But the bigger news for the pain community may be in the United Kingdom, which has some of the strictest marijuana laws in Europe. Home Secretary Sajid Javid made a surprise announcement last week that medical cannabis products would be rescheduled on November 1 and become available by prescription to treat chronic pain, epilepsy and chemotherapy-induced nausea.

Javid agreed to review the scheduling of medical cannabis in June, after a public outcry over the seizure of CBD oil flown into Heathrow Airport for a 12-year old boy who has epilepsy. Although the oil primarily contained cannabidiol – the non-psychoactive ingredient in marijuana – it was still technically illegal under UK drug laws.

“I stressed the importance of acting swiftly to ensure that where medically appropriate, these products could be available to be prescribed to patients,” Javid said in a statement.

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“I have been clear that this should be achieved at the earliest opportunity whilst ensuring that the appropriate safeguards were in place to minimise the risks of misuse and diversion.”

Javid was also clear he has no intention of supporting the legalization of recreational marijuana in the UK. Smoking cannabis in any form will also remain illegal. Even so, it was a big step forward for marijuana supporters..  

“This is a major victory for our campaign and will mean a lot of people will have a much better quality of life,” Clark French, a multiple sclerosis patient and cannabis activist, told Leafly.

“It does look that this could be the most open, accessible medical cannabis policy in Europe, if they get it right and we keep guiding them in the right directions,” said Jon Liebling of United Patients Alliance, a medical marijuana advocacy group.    

The rollout of CBD-based medicines in the UK will go slowly. It could take up to a year before the National Health Service comes up with guidelines to govern the distribution of CBD-based products. Initially, only medical specialists will be allowed to prescribe cannabis, although the guidelines are expected to eventually include general practitioners.

Activists are urging the Home Office to allow medical cannabis for all patients, not just those with pain, epilepsy or nausea.

“We do believe that everybody should have access,” said Liebling. "When you're talking about cannabis as a medicine, you really do have to compare the risks associated with cannabis that we're aware of versus the risks of those drugs that patients are already taking.” 

Legalization Worries Canadian Medical Association

Medical cannabis has been legal in Canada since 2001 and about 330,000 Canadians are registered and already have access to it.  But some health officials are less than enthused about the October 17 legalization of recreational cannabis.

"Given the known and unknown health hazards of cannabis, any increase in use of recreational cannabis after legalization, whether by adults or youth, should be viewed as a failure of this legislation," wrote Dr. Diane Kelsall, interim Editor-in-Chief, in an editorial in the Canadian Medical Association Journal.

Kelsall points to the stampede of Canadian and American companies looking to get into the cannabis industry and predicts many will brazenly advertise their products to young people.

“Cannabis companies may initially focus on attracting current consumers from black-market sources, but eventually, to maintain or increase profits, new markets will be developed as is consistent with the usual behaviour of a for-profit company. Marketing efforts may include encouraging current users to increase their use or enticing a younger demographic. The track record for tobacco producers has not been encouraging in this regard, and it is unlikely that cannabis producers will behave differently,” Kelsall warned.

Kelsall said the Canadian government needs to carefully track cannabis use and should have the courage to amend the law if problems arise.

A Pained Life: Torn Between Hope and Fear

By Carol Levy, PNN Columnist

Tonight, I feel like the character Pushmi-pullyu from Doctor Dolittle. You know, the animal that has a head at both ends; one head pulling to go to the right, the other head raring to go to the left.

I’m also feeling torn between hope and fear.

Although I have trigeminal neuralgia, which is not a headache, I am going to be admitted tomorrow to the headache inpatient unit at one of the city hospitals.

The treatment I will receive is a 24-hour a day IV lidocaine drip, for 4 to 5 days.

Many years ago, I had lidocaine infusions but they were for only 3 to 4 hours each time. I tried it a few times, a few weeks apart, but there was never any benefit. On the upside, there were also no side effects.

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As I read the information online about getting lidocaine for a protracted period, I am getting nervous. Hallucinations? Uh oh. I don't think so. That scares me.

I already know about the potential heart risks. The doctor told me I will have to be tethered to a heart monitor the whole time as a precaution. A sudden drop or increase in blood pressure, unconsciousness and even seizures are possible.

I did not know about the potential for deep vein blood clots until I read the information the clinic sent me. I will have to wear anti-clot stockings the whole time.

There is a list of other “moderate” and “mild” side effects: a metallic taste, tinnitus (ringing in the ears), lightheadedness, agitation, drowsiness, problems focusing, slurred speech, and numbness of the mouth and tongue.

The more serious side effects worry me. Nothing happened when I tried lidocaine the other times, but maybe having it 24 hours a day for a few days in a row vs. 3 to 4 hours every few days makes a difference.

That’s where the Pushmi-pullyu comes from. I do not know if I want to do this.

This will be the first time in the last 13 hospitalizations where I will not be going in for brain surgery to treat my trigeminal neuralgia. I have to admit, there is probably an unconscious aspect of feeling as though I am allowing myself to do one more potentially really dangerous procedure, like another surgery, and I am putting that feeling of danger on the lidocaine.

On the other hand, the reason to go ahead is pure and simple. Bathing the nerves in anesthetic for 72 hours, maybe slightly longer, makes sense to me. The nerves will be numbed or at least calmed down. How can that not work?

My bags are packed. I'm ready to go.  So once again, hope wins out over fear.

Is that a good thing or bad? I won't know for a few days, but I wonder if instead of Pushmi-pullyu for those of us in pain, it should be Fearmi-hopeyu -- with the “hopeyu” being the stronger of the two.

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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.

New Lyme Disease Test Could Lead to Earlier Treatment

By Pat Anson, PNN Editor

At long last, scientists are close to developing a new test to detect Lyme disease weeks sooner than current tests -- allowing patients to begin treatment earlier.

Lyme disease is a bacterial illness spread by ticks. Left untreated, it can lead to chronic conditions such as joint and back pain, chronic fatigue, fibromyalgia and neuropathy.

Borrelia burgdorferi was first identified as the bacteria that causes Lyme disease in 1983.  The antibody tests currently used to detect Borrelia were developed a decade later and have a number of shortcomings. They can take up to three weeks to get results and cannot distinguish between an active infection or an old one.

A team of scientists recently reported in the journal Clinical Infectious Diseases that advances in molecular diagnostics should make a new DNA test for Borrelia technically feasible.

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“These direct tests are needed because you can get Lyme disease more than once, features are often non-diagnostic and the current standard FDA-approved tests cannot distinguish an active, ongoing infection from a past cured one,” said lead author Steven Schutzer, MD, a physician-scientist at Rutgers New Jersey Medical School.

“The problem is worsening because Lyme disease has increased in numbers to 300,000 per year in the United States and is spreading across the country and world.”

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Early symptoms of Lyme disease include fever, chills, headaches, fatigue, muscle and joint aches, and swollen lymph nodes. A delayed rash often appears at the site of the tick bite, which resembles a ring or bulls-eye. When there is no rash, a reliable laboratory test is needed to detect an active disease.

“The new tests that directly detect the Lyme agent’s DNA are more exact and are not susceptible to the same false-positive results and uncertainties associated with current FDA-approved indirect tests,” said Schutzer.

Lyme disease is usually treated with antibiotics, but some patients experience complications that lead to Lyme disease syndrome (PTLDS), with long-term symptoms such as fatigue, muscle and joint pain and cognitive issues. Autoimmune diseases have also been associated with chronic Lyme disease.

Supplements Often Tainted by Hidden Drugs

By Pat Anson, PNN Editor

Hundreds of dietary supplements – including some marketed to relieve joint and muscle pain – are tainted with pharmaceutical drugs, according to a new study published in JAMA Network Open.  

Researchers with the California Department of Public Health looked at 746 supplements that the Food and Drug Administration found to be adulterated from 2007 to 2016. About half of the supplements remained on the market, even after the FDA found they contained potentially harmful drugs.

"The FDA didn't even bother to recall more than half of the potentially hazardous supplements," Pieter Cohen, MD, a Harvard Medical School professor told NPR. "How could it be that our premier public health agency spends the time and money to detect these hidden ingredients and then doesn't take the next obvious step, which is to ensure that they are removed from the marketplace?"

Over half of American adults take dietary supplements that contain minerals, vitamins, herbs, fish oil and other “natural” substances.  Most of the adulterated supplements were marketed for sexual enhancement, weight loss or muscle building.

Of the 14 supplements that were promoted as treatments for arthritis, muscle and joint pain, osteoporosis or other painful conditions, half contained diclofenac, a nonsteroidal anti-inflammatory drug (NSAID) and five contained dexamethasone, a steroid used to treat inflammation.

One supplement promoted as a treatment for arthritis – Pro ArthMax -- was found to contain four different NSAIDs, as well as a muscle relaxant and a non-narcotic pain reliever that was never approved for use in the United States. The manufacturer of Pro ArthMax voluntarily recalled the supplement in 2014 after being warned by the FDA.   

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Cohen chided the agency for relying on voluntary recalls to get tainted supplements off the market and accused the FDA of “dereliction of duty” in a JAMA commentary. He called on Congress to change the federal law that exempts the $35 billion dollar supplement industry from pre-market safety and clinical studies that are required for pharmaceutical drugs.   

“More than FDA action will be required to ensure that all adulterated supplements are effectively and swiftly removed from the market,” Cohen wrote. “The process that the FDA is required to follow to remove supplements from the marketplace (is) cumbersome and time-consuming; nevertheless, the agency’s failure to aggressively use all available tools to remove pharmaceutically adulterated supplements from commerce leaves consumers’ health at risk.”

Dietary supplements that are tainted with hidden drugs may interact with other medications and raise the risk of adverse events, particularly when consumers already may be using NSAID-containing products.  

Cannabis Somewhat Effective in Treating MS

By Pat Anson, PNN Editor

Medical cannabis is mildly effective in relieving pain and other symptoms in patients with multiple sclerosis (MS), according to a new study published in JAMA Network Open.

Spanish researchers analyzed 17 clinical trials involving over 3,100 patients – one of the largest reviews to date on the efficacy of cannabinoids in treating MS. Overall, they found that cannabis was safe, but had limited effectiveness in relieving pain, muscle spasticity and bladder dysfunction.

“Small but statistically significant differences were found in favor of cannabinoids for all 3 symptoms,” Marissa Slaven, MD, and Oren Levine, MD, of Ontario’s McMaster University said in a JAMA commentary. “The authors conclude that cannabinoids provide a mild reduction in subjective outcome assessment of uncertain clinical significance and that they are safe.”

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MS is a chronic and incurable disease which attacks the body’s central nervous system, causing numbness in the limbs, difficulty walking, paralysis, loss of vision, fatigue and pain.

Medications and disease modifying drugs currently used to treat MS can cost tens of thousands of dollars a year – so a low-cost alternative treatment would be welcomed by many patients.

Four different medical cannabinoids were used in the 17 trials that were evaluated. They contained different levels of cannabidiol (CBD) and tetrahydrocannabinol (THC), the active ingredient in marijuana that makes people high. A lot of uncertainty remains about whether CBD or THC are more effective in relieving MS symptoms – something the JAMA study failed to resolve.

“It is critical that researchers gain a deeper understanding of both of the major (THC and CBD) and minor components of this therapy to unlock its full potential,” said Slaven.

“Given the relative safety of these agents, lack of strong evidence of other effective treatment options, and increasing access in some jurisdictions, it may seem appealing to include cannabinoids in the armamentarium of therapies for MS. But carefully conducted, high-quality studies with thought given to the biologic activity of different cannabis components are still required to inform on the benefits of cannabinoids for patients with MS.  

"The bottom line is there is certainly something happening with cannabinoids in regard to symptoms," Nicholas LaRocca, vice president of healthcare delivery and policy research at the National Multiple Sclerosis Society, told HealthDay. "In spite of very strong interest in cannabinoid therapy, we really have relatively little in terms of good research to guide us in terms of what does and what doesn't work, what works for which types of individuals, and so forth."

A small study was recently launched in Australia that might answer some of those questions. Emerald Health Pharmaceuticals of San Diego is using a synthetic version of CBD – called EHP-101 -- to treat about 100 people who suffer from MS or scleroderma, another autoimmune disease. The placebo controlled Phase I trial is meant to determine whether EHP-101 is safe and has any side effects. Results are expected next year.

A Beautiful Catastrophe

By Mia Maysack, PNN Columnist

Having lived my last 18 years with chronic migraines, I have my fair share of headache and migraine "poses." Yet I must admit, they're never as glamorous as what one can find in a fashion magazine. 

There’s a trend in the world of fashion to direct photo shoots in a way that brings attention to the structure of the model’s face or to exaggerate their make-up. They often to do this by framing a model’s face as if they’re experiencing head pain.

This has become known as the “migraine pose” or “headache pose” and they recently caused quite a stir on Instagram and Twitter among those that truly endure these ailments.

“If you don’t have migraine disease please don’t use #migrainepose,” a poster warned a makeup artist who shared some of her work.

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“Wow. Talk about insensitive to true migraine sufferers. Migraines look nothing like this primped model. AWFUL,” wrote another.

“Please admit your ignorance to migraine disease and show your support by instead posting a picture for #shadesformigraine. Help teach others that diseases of any kind should not be mocked,” said another migraine sufferer.  

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I don’t look like any of these models when I have a bad migraine. Ordinarily, I may be hooked up to an IV machine due to severe dehydration or I might be kneeling to the porcelain Gods attempting to combat overwhelming nausea.

There's also light and sound sensitivity, dizziness, vision disturbances, vomiting and fatigue. I describe my pain as a continuous “brain freeze” or feeling like my head was slammed against a wall.

Here are six poses that I have when I go through various stages of defeat, despair, distress, misery, grief and agony.

My most infamous pose of all? I'm nowhere to be found because I remain barricaded in a pitch black, silent room as I pray for the strength not to lose that last shred of sanity I have left and resist the urge to put an end to all of this already.

That image isn't sexy enough to sell magazines, is it? Nevertheless, that's the reality that millions of Americans are forced to live with and there is absolutely nothing pretty about it. 

When experiencing that level of discomfort, people are debilitated and focusing on any task can be impossible. To top it off, there is often no way of knowing how long an attack may last.

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Then there's the heavy emotions, such as guilt for missing out on things or feeling as though we are a burden and letting others down. And there’s the frustration and anger of being sick and tired of being tired and sick.  

People who are not experienced with enduring this type of pain likely don't stop to consider these things. Although we wouldn't wish this lifestyle on anyone, there is a priceless value and basic human need in being validated, acknowledged and understood. We need a pose for that.  

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

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.

Cutting Rx Opioid Supply Is Not Stopping Diversion

By Roger Chriss, PNN Columnist

Drug diversion is an increasingly important factor in the opioid overdose crisis. A new report from Protenus found that 18.7 million pills, valued at around $164 million, were lost due to drug diversion in the United States during the first half of 2018. This represents a vast increase over 2017, when 20.9 million pills were diverted during the entire year.

As we’ve described previously, drug diversion in the supply chain is a vast, complex and old phenomenon. And it is rapidly worsening.

According to the textbook, “Prescription Drug Diversion and Pain,” drug thefts from hospitals “have increased significantly within the past decade as street prices have climbed sharply for diverted prescription opioids and benzodiazepines.”

In other words, the steep cuts in opioid production that began in 2017 aren’t working. And Attorney General Jeff Sessions was wrong when he said, "The more a drug is diverted, the more its production should be limited." A tightening supply has actually resulted in more diversion.

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Drug diversion can be broadly divided into three categories: clinical diversion, personal diversion and industrial diversion. The first, according to Protenus, is drug diversion by healthcare workers. The second is the sale or transfer by a patient who received a legitimate prescription to a third party. And the third is everything else, from diversion by employees at manufacturing facilities to theft in distribution centers or pharmacies.

Personal diversion has gotten substantial attention in recent years. Prescription drug monitoring databases, pain agreements, and urine drug testing are all intended to help prevent such diversion.

Clinical drug diversion is a long-standing problem in healthcare that has garnered more interest recently. The bipartisan opioid bill recently passed by Congress includes a provision that allows hospice workers to destroy opioid medication that has expired or is no longer needed by a patient. The National Institutes of Health has also awarded a grant to further expand efforts to detect opioid and other drug theft in hospital systems.

Industrial diversion is less well known, but appears to be a longstanding problem. In the book “Dopesick,” journalist Beth Macy writes that as early as 2001 the DEA was investigating lax security standards at Purdue Pharma manufacturing plants after the arrest of two Purdue employees accused of trying to steal thousands of pills.

Between 2009 and 2012, over 63,000 thefts of opioids and other controlled substances were reported to the DEA. Pharmacies (66%) and hospitals (19%) accounted for the vast majority of those drug thefts.

And in 2007, an audit of CMS Medicare Part D payments identified 228,000 prescription payments with invalid prescriber identifications for Schedule II drugs.

In other words, tens of thousands of drug thefts and hundreds of thousands of fraudulent prescriptions are occurring annually, leading to millions of prescription pills entering the illegal market. This may help explain how OxyContin entered the black market so quickly and completely.

As Beth Macy writes: “The town pharmacist on the other line was incredulous: “Man, we only got it a month or two ago. And you’re telling me it’s already on the street?””

The National Association of Drug Diversion Investigators and the DEA Diversion Control Division are attempting to address industrial diversion. But available evidence suggests there is much more work needed to secure the entire prescription drug supply chain.

As the opioid overdose crisis continues to evolve toward poly-drug substance abuse, drug diversion will play an increasingly significant role in the illegal supply of prescription pharmaceuticals unless the entire supply chain is secured. This will require far more than the easy tasks of checking a prescription database or legislating pill counts. The hard part of reducing drug diversion remains to be done.

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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.

Do Drug Addicts Really Shoot Kratom?

By Pat Anson, PNN Editor

Our story last week about drug addicts in Ohio allegedly shooting kratom to get a “heroin-like high” angered many people who use the herbal supplement to treat chronic pain and other medical conditions.

“Who the hell is injecting kratom? These people are out of their minds,” wrote one reader.

“No one and I mean no one has ever injected kratom. Kratom is a wonderous, natural plant with many positive effects,” said Erik.

“It’s pathetic that lies like this are being spread about a natural leaf that helps with pain,” wrote Jennifer Greenwood. “Nobody buys kratom from heroin dealers.”

But that’s exactly what the Ohio Substance Abuse Monitoring Network (OSAM) reported earlier this year in its statewide assessment of drug abuse trends. OSAM called a kratom “a psychoactive plant” and claimed drug users in northeast Ohio were buying kratom from heroin dealers and then injecting it.

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“Participants reported that the most common route of administration for kratom is intravenous injection (aka “shooting”). Participants in the Akron-Canton region estimated that out of 10 kratom users, seven would shoot the drug and three would orally consume the drug (including drinking it as a tea),” OSAM said.

The OSAM report was cited by the Ohio Board of Pharmacy when it voted last week to classify kratom as a Schedule I controlled substance, alongside heroin, LSD and other dangerous drugs.

The board said kratom can cause hallucinations, psychosis, seizures, weight loss and insomnia, and cited six deaths in Ohio in which kratom was “the primary cause of death.”

The FDA and DEA have made similar claims about the health risks of kratom, but OSAM appears to be the first public agency to allege that kratom is taken intravenously. Repeated calls to OSAM for further information were not returned.    

Kratom comes from the leaves of a tree that grows in southeast Asia, where it has been used for centuries as a pain reliever and stimulant. In recent years, millions of Americans have discovered kratom and started using it as a treatment for pain, addiction, anxiety and depression.

“I don’t think most kratom users are injecting it.  Most users that I’ve ever talked to either mix it with a beverage, ‘toss and swish’, or take capsules,” says Jane Babin, PhD, a molecular biologist and consultant to the American Kratom Association, an organization of kratom vendors and consumers.

While skeptical that anyone would inject kratom, Babin says some addicts are desperate enough to try anything. She thinks the kratom sold by drug dealers in Ohio could be adulterated heroin.

“They describe kratom as a brown substance that resembles heroin.  So I can’t help wondering if what they were using was heroin or at least something other than kratom,” Babin wrote in an email to PNN.

“I can’t imagine that they would be mixing powdered leaf kratom with liquid, heating it and injecting it.  There’s too much insoluble plant matrix/cellulose.  If they did, I would expect problems unless they could filter it… which isn’t likely.  Injecting an ethanol extract directly would likely cause tissue damage, and I have to wonder how sterile any of it is.”

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But there is a case in the medical literature of a 29-year old Rhode Island man doing just that. He started using kratom to treat his opioid addiction, but eventually developed a tolerance for it and needed more.

“He was initially drinking Kratom tea daily, then several times daily, until he found a way to inject it intravenously,” researchers reported last year in the Journal of Toxicology and Pharmacology.

“He began buying Kratom extract in alcohol. He let the alcohol evaporate in a spoon, and then dissolved the remaining resin in water to inject. Subsequently, he began cooking off the alcohol with heat. Finally, the patient said that he was impatient, and began injecting the extract directly. At the time of presentation, he was buying Kratom extract from multiple online vendors, and injecting 1 ml of extract six times daily.”

The man eventually checked himself into an emergency room and sought treatment for kratom addiction.

“This case is an important reminder of the chronic nature of opioid addiction, which has a high rate of relapse. As Kratom becomes more popular in patients seeking abstinence from opiates, including heroin, such intravenous use may also increase,” researchers warned.

Adulterated Kratom

One of the co-authors of that study believes there is another potential risk. Like other food and herbal supplements, kratom products are essentially unregulated and there are little or no quality controls.

“The stuff that’s sold as kratom in the United States cannot be reliably proven to be kratom,” says Edward Boyer, MD, a Professor of Emergency Medicine at Harvard Medical School.   

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“There is evidence to suggest that some of the kratom sold in the United States is adulterated to make it more potent, to make it more powerful.”

Boyer says some kratom supplements have been found to have artificially elevated levels of 7-hydroxymitragynine, one of the naturally occurring alkaloids that make kratom act on opioid receptors in the brain. He suspects opioid drugs are also being used to boost kratom’s potency.

“The fact that a lot of kratom is adulterated is not surprising,” says Jane Babin.  “I suspect it is more prevalent in the stuff that’s being sold at smoke shops and gas stations.  This is a red herring when it comes to kratom, in the same way that Salmonella contamination is.  Both are ‘problems’ with simple solutions through regulation and oversight of kratom identity and purity.”

Instead of banning kratom, Babin says it should be regulated with a standards and certification program that would help keep adulterated products off the market.

Kratom is already banned in Alabama, Arkansas, Indiana, Vermont, Wisconsin and the District of Columbia. And there is speculation that the DEA may try again to classify kratom as a federal Schedule I controlled substance, which would make sales and possession of the plant illegal nationwide. The DEA withdrew a plan to ban kratom in 2016 after a public outcry.

Last week’s vote by the Ohio pharmacy board starts a months-long process of drafting new regulations for kratom, so a ban isn’t in effect yet. Public comments will be accepted until October 18. 

“If Ohio does ban kratom (and I hope they don’t), I predict that the already epic opioid overdose problem in that state will get worse,” says Babin. “It would be a shame for Ohio to indirectly prove the value of kratom in combating the opioid crisis when, after it is banned, overdose deaths and suicides increase.”

A New Era for Genetic Medicine

By Barby Ingle, PNN Columnist

This past September, I attended several conferences for chronic pain awareness month. Most had the same speakers and the same topics, but a promising new development was discussed at one meeting: Genetic medicine as a treatment for painful diseases.

For those who are new to the concept of gene replacement therapy, this is a potential way to treat genetic diseases that would save time, pain, life and energy for anyone with a gene related health challenge.

New genetic therapies, such as gene editing and oligonucleotides, are already paving the way towards treating rare diseases. Gene therapy focuses on adding a corrected copy of a gene or directly altering a mutated gene, while oligonucleotides are synthetic molecules used to inactivate genes involved in the disease process.

I listened to leaders from patient advocacy and industry discuss the promise of these new approaches, including Bartholomew Tortella, MD, who is a leader in Global Medical Affairs at Pfizer and Pushkal Garg, MD, who is Chief Medical Officer at Alnylam Pharmaceuticals. It was interesting to me that pharmaceutical companies are on the cutting edge of gene therapies.

One of the things I learned is that genetic editing and remapping are “one and done” treatments. A gene fix can only be done once. No doubt it would be expensive, but if it works what is the price of 30 years of standard treatments to manage a condition vs. a one-time treatment that can reverse the actual underlying genetic issue?

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I have had Prometheus and Color gene testing, and know that I have some life challenges of my own built into my genes. But learning about the potential of gene therapy gave me reason for hope.

There are already genetic therapies that are approved by the FDA for blind patients. Other genetic treatments will be coming online soon. We have been making advances with mice in research studies, and translating that into human clinical trials has now begun.

Would you want to get involved in the early stages of genetic testing? Or would you rather wait until its safety and effectiveness is proven? We won’t make progress without patients who are willing to volunteer and have their genes edited first. This is something that is a little sci-fi and scary to comprehend. It takes a special person to go first in these types of situations, yet the scientists I spoke with say the trials are being closely monitored for safety and efficacy.

One major challenge is that viruses are often used in gene replacement therapy to introduce the proper genes into the body. If a patient has previously been exposed to the virus, the new gene will be attacked by the body’s immune system and the treatment won’t work. If the therapy works, the virus is now in their body and it will not be a future option as a delivery system if the gene mutation returns or is not fully corrected.

Finding that Goldilocks zone for each patient will continue to be a challenge.

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Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at 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.

Is Walmart Blacklisting Doctors?

By Pat Anson, PNN Editor

Carolyn Eastin has been a nurse practitioner in Arizona for nearly a decade. She is the only licensed prescriber at a busy pain clinic in Scottsdale, where many patients are on high doses of opioid medication.

Eastin says she was “mortified” by a letter last month from Walmart’s corporate headquarters that said the retail giant’s Walmart and Sam’s Club pharmacies would no longer fill her prescriptions for opioids.

“In reviewing your controlled substance prescribing patterns and other factors, we have determined that we will no longer be able to continue filling your controlled substance prescriptions,” the letter states. “We regret any inconvenience this may cause you or your patients.”

“It was very humiliating. I was upset about it,” says Eastin. “We’ve already had patients who can’t get prescriptions there.”

The unsigned Walmart letter has all the appearances of a form letter. It makes no mention of any complaints against Eastin, whether any of her patients have overdosed, or if her prescribing is medically inappropriate.

Eastin writes prescriptions for nearly 500 chronic pain patients at the Absolute Rehabilitation and Pain Medicine clinic. Most are on high doses of opioids, at levels well above those recommended by the CDC in its 2016 opioid guideline. Eastin believes she was red flagged by Walmart after a prescription database search and is now on a “blacklist” of prescribers.

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“I’m the only one who writes prescriptions here. So I would have higher numbers than the average nurse practitioner,” she told PNN. “I’m not doing anything wrong. I’m tapering my patients. I’m trying to do my part to bring people into compliance.”

Does Walmart blacklist doctors who prescribe high doses of opioids? Is Walmart practicing medicine without a license? We posed those questions to Walmart and received a one sentence reply.

“Walmart does not comment on our patients or their prescribers,” wrote Erin Hulliberger, Walmart Corporate Communications in an email.

Corresponding Responsibility

What Walmart is doing isn’t illegal. Under federal law, pharmacists have a “corresponding responsibility” when filling medications -- a legal right to refuse to fill prescriptions they consider unusual or improper. Most pharmacists will call the prescribing doctor to double-check before turning away a patient, but in some cases there’s a “hard edit” – pharmacy jargon for when a company database tells a pharmacist not fill a prescription.

“It may be appropriate for a pharmacy to not fill a prescription because of a dangerous dose or even an inappropriate drug,” says Lynn Webster, MD, a pain management expert and past president of the American Academy of Pain Medicine.

“However, if they are refusing to fill a prescription because the doctor has met some arbitrary dosage threshold by the company without understanding the circumstances, it would be inappropriate and potentially harmful to the patient.”   

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A former Walmart pharmacist told PNN the company closely monitors prescriptions and doctors at every store.

“They had assembled prescription numbers for every doctor who had filled prescriptions at my store. They knew the exact number of medications ordered and sold down to the tablet. They knew what drugs the doctors wrote for and what percentage of the total each drug they wrote for," said the pharmacist, who asked to remain anonymous.

Walmart recently began using Narxcare, a private healthcare database developed by Appriss Health, which analyzes the prescriptions and medical claims of millions of Americans. Every patient evaluated by NarxCare is assigned a “risk score” based on the past two years of their prescription drug use, medical claims, electronic health records and even their criminal history.

Is Walmart using Narxcare data to blacklist doctors? A spokesman for Appriss denies it.

“No, we do not provide provider risk scores to Walmart, or anyone else,” said David Griffin, Vice President of market and communication for Appriss Health.

Prescription Data Mining

The data mining of opioid prescriptions has become increasingly common in healthcare and law enforcement. Doctors, pharmacies, insurers, and federal and state regulators are all using prescription drug databases to look for signs of opioid “overprescribing.”

In addition to Walmart, the Absolute clinic has drawn the attention of the Arizona Medical Board. Last year the clinic’s owner, Dr. Steve Fanto, signed an agreement with the medical board to stop practicing medicine after he was accused of overprescribing Subsys, a potent fentanyl spray.  

Although Fanto is no longer involved in the day-to-day management of the Absolute clinic, it remains under scrutiny. Last December, the clinic was raided by DEA agents, although no charges were ever filed as a result of that investigation. The clinic has also received over a hundred letters from insurer United Healthcare warning about the high dose prescriptions Carolyn Eastin is writing.

“It’s a bullying technique,” says Jessica Webb, the office manager at Absolute. “We’re afraid if we don’t taper down, the insurance companies will file a complaint on Carolyn. If Carolyn’s license is revoked, we’ll have to shut down. She’s the only reason we’re still open.”

Caught in the middle of this tug of war are Absolute’s patients – who could be faced with the difficult task of finding new doctors if the clinic closes. Their painful medical conditions -- and the human suffering that comes with them – appear to be non-factors in Walmart’s decision not to fill Eastin’s prescriptions.

“I can’t tell you the number of patients that made the comment to me, ‘I might as well die. I don’t have any other options but to take my own life because I can’t live without this medication,’” Eastin said. “It’s very difficult to look these people in the eye every single day and say, ‘I want to help you but I’m going to take more away from you.’”

‘I Hope It Doesn’t Harm Patients’

Pain management experts say its unethical to use data mining alone to judge whether a prescription should be filled.

“It appears that Walmart is trying to reduce their risk of being charged with criminal conduct and paying more fines. It is hard to know. But whatever their reason I hope it doesn't harm patients,” said Webster.  

“Without further explanation about the basis for their decision, and without information about any previous interventions attempted by Walmart, this seems remarkably punitive and capricious,” said Bob Twillman, PhD, Executive Director of the Academy of Integrative Pain Management.

“I would hope that companies that review prescriber records would attempt a series of less drastic interventions with the prescriber before reaching this point. There may be issues of concern, but the appropriate step is to discuss those with the prescriber and try to reach an understanding about what is going on, and about what needs to happen to ensure that everyone is prescribing and dispensing safely. I’d be interested to hear from Walmart about whether they have such a graduated policy and if not, why not.”

Carolyn Eastin says there’s only so much she can do. Abruptly tapering patients or cutting them off from opioids could cause more harm than good.

“We’re trying to follow the CDC guidelines. We’re trying to comply with the insurance letters asking for tapers,” she says.  “I’m doing my part to taper my patients. But these things have to be done delicately. We just can’t go, ‘Okay, give me all your meds.’”  

“We’ve pushed them to get physical therapy and cognitive behavioral therapy, and patients are having good results with that,” says Jessica Webb. “But we have some patients, if I had to take their meds away, I couldn’t go to sleep at night. They’re that sick.”   

Doctors Urge CDC to Clarify Rx Opioid Guideline

(Editor’s Note: Five healthcare professionals recently began circulating an open letter to the CDC asking it to make a “bold clarification” of its controversial 2016 opioid guideline.

They believe many chronic pain patients have suffered under the guideline, because it has led to widespread tapering and discontinuation of opioids. They invited other healthcare professionals to co-sign the letter. To date, well over 200 have.

To see a list of signatories, click here. If you are a healthcare professional and also wish to sign the letter, click here.)  

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Authors: Health Professionals for Patients in Pain

Any professional who cares for patients, including physicians, pharmacists, nurses, psychologists and social workers, is invited to sign on to this letter, as are any professional organizations that wish to endorse formally. 

I. In 2016, the Centers for Disease Control and Prevention, CDC, issued a Guideline for Prescribing Opioids for Chronic Pain for primary care physicians. Its laudable goals were to improve communication between clinicians and patients about the risks and benefits of opioid therapy for chronic pain, improve the safety and effectiveness of pain treatment, and reduce the risks associated with long-term opioid therapy. The Guideline reflected the work of appointed experts who achieved consensus on the matter of opioid use in chronic pain. 

Among its recommendations are that opioids should rarely be a first option for chronic pain, that clinicians must carefully weigh the risks and benefits of maintaining opioids in patients already on them, and that established or transferring patients should be offered the opportunity to re-evaluate their continued use at high dosages (i.e., > 90 MME, morphine milligram equivalents).  

In light of evidence that prescribed dose may pose risks for adverse patient events, clinicians and patients may choose to consider dose reductions, when they can be accomplished without adverse effect, and with possible benefit, according to some trial data.  

Nonetheless, it is imperative that healthcare professionals and administrators realize that the Guideline does not endorse mandated involuntary dose reduction or discontinuation, as data to support the efficacy and safety of this practice are lacking.  

II. Within a year of Guideline publication, there was evidence of widespread misapplication of some of the Guideline recommendations. Notably, many doctors and regulators incorrectly believed that the CDC established a threshold of 90 MME as a de facto daily dose limit. Soon, clinicians prescribing higher doses, pharmacists dispensing them, and patients taking them came under suspicion.  

Actions that followed included payer-imposed payment barriers, pharmacy chain demands for the medical chart, or explicit taper plans as a precondition for filling prescriptions, high-stakes metrics imposed by quality agencies, and legal or professional risks for physicians, often based on invocation of the CDC’s authority. Taken in combination, these actions have led many health care providers to perceive a significant category of vulnerable patients as institutional and professional liabilities to be contained or eliminated, rather than as people needing care.  

III. Adverse experiences for these patients are documented predominantly in anecdotal form, but they are concerning. Patients with chronic pain, who are stable and, arguably, benefiting from long-term opioids, face draconian and often rapid involuntary dose reductions. Often, alternative pain care options are not offered, not covered by insurers, or not accessible. Others are pushed to undergo addiction treatment or invasive procedures (such as spinal injections), regardless of whether clinically appropriate.  

Consequently, patients have endured not only unnecessary suffering, but some have turned to suicide or illicit substance use. Others have experienced preventable hospitalizations or medical deterioration in part because insurers, regulators and other parties have deployed the 90 MME threshold as a both a professional standard and a threshold for professional suspicion. Under such pressure, care decisions are not always based on the best interests of the patient. 

lV. Action is Required: The 2016 Guideline specifically states, “the CDC is committed to evaluating the guideline to identify the impact of the recommendations on clinician and patient outcomes, both intended and unintended, and revising the recommendations in future updates when warranted”. The CDC has a moral imperative to uphold its avowed goals and to protect patients.  

Therefore, we call upon the CDC to take action: 

1. We urge the CDC to follow through with its commitment to evaluate impact by consulting directly with a wide range of patients and caregivers, and by engaging epidemiologic experts to investigate reported suicides, increases in illicit opioid use and, to the extent possible, expressions of suicidal ideation following involuntary opioid taper or discontinuation. 

2. We urge the CDC to issue a bold clarification about the 2016 Guideline – what it says and what it does not say, particularly on the matters of opioid taper and discontinuation.  

Signatories here represent their own views, and do not purport to reflect formal positions of their employing agencies, governmental or otherwise.

For questions regarding the letter, please contact Stefan G. Kertesz, MD, Professor of Medicine at University of Alabama at Birmingham School of Medicine (skertesz@uabmc.edu).

The information in this letter 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.

Medical Cannabis to Be Studied in Nursing Homes

By Pat Anson, PNN Editor

Plans have been announced in Canada for a research study on the effectiveness of medical cannabis in treating pain and improving cognitive function in seniors. The 6-month pilot program will be one of the largest of its kind, enrolling up to 500 nursing home residents.

The Ontario Long Term Care Association (OLTCA) is partnering with Canopy Growth Corporation, which makes a variety of cannabis products through its Spectrum Cannabis brand. The pilot study will focus on evaluating the impact of medical cannabis on residents’ health and quality of life, as well as caregiver stress and the economic benefits of cannabis use in nursing homes.

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"Medical cannabis is currently prescribed for residents as appropriate, but it's still an emerging area," says Candace Chartier, CEO of OLTCA, which represents over half of Ontario's 630 long-term care homes.

"Through this partnership and pilot study, we hope to provide more clarity to long-term care clinicians and frontline staff about the use of medical cannabis for residents."

Can cannabis improve cognitive function? The popular image of clueless stoners breezing through life like Jeff Bridges as the Dude in “The Big Lebowski” may not be entirely accurate.

A small 2016 study by researchers at Harvard Medical School and Tufts University found that cognitive function improved in 24 adults who smoked marijuana for three months. Participants also reported better sleep, less depression and a significant decrease in their use of medications such as opioids — all qualities that would be welcomed in nursing homes.

"There is clearly an interest in the long-term care space to explore medical cannabis as an alternative to traditional medications for pain and degenerative cognitive function," said Mark Zekulin, President & Co-CEO of Canopy Growth. "The pilot study we've announced… is the first step in developing an evidence-based, best practice approach to medical cannabis that will result in consistent care for thousands of seniors and ultimately improve quality of life and outcomes in long-term care homes."

A recent survey in Israel of over 2,700 elderly patients found that medical cannabis significantly reduced their chronic pain.  About a third of the patients used CBD oil, about 24 percent smoked marijuana, and about six percent used a vaporizer.

Over half of the seniors who originally reported "bad" or "very bad" quality of life said their lives improved to "good" or "very good."

"We found medical cannabis treatment significantly relieves pain and improves quality of life for seniors with minimal side effects reported," said Victor Novack, MD, a professor of medicine at Ben-Gurion University and head of the Soroka Cannabis Clinical Research Institute.

A recent survey by the American Association of Retired Persons (AARP) found that most older Americans think marijuana is effective for pain relief, anxiety and nausea.

Many Alternative Therapies for Back Pain Not Covered

By Pat Anson, PNN Editor

A new study by the Johns Hopkins Bloomberg School of Public Health has confirmed what many back pain sufferers already know: Public and private health insurance plans often do not cover non-drug alternative pain therapies.

Bloomberg researchers looked at dozens of Medicaid, Medicare and commercial insurance coverage policies for chronic lower back pain and found that while most plans covered physical therapy and chiropractic care, there was little or no coverage for acupuncture, massage or counseling.

"This study reveals an important opportunity for insurers to broaden and standardize their coverage of non-drug pain treatments to encourage their use as safer alternatives to opioids," says senior author Caleb Alexander, MD, a professor of epidemiology at the Bloomberg School.  

Alexander and his colleagues examined 15 Medicaid, 15 Medicare Advantage and 15 major commercial insurer plans that were available in 16 states in 2017.

Most payers covered physical therapy (98%), occupational therapy (96%), and chiropractic care (89%), but coverage was inconsistent for many of the other therapies.

Acupuncture was covered by only five of the 45 insurance plans and only one plan covered therapeutic massage.

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Nine of the Medicaid plans covered steroid injections, but only three covered psychological counseling.

"We were perplexed by the absence of coverage language on psychological interventions," Alexander says. "It's hard to imagine that insurers wouldn't cover that."  

Even for physical therapy, a well-established method for relieving lower back pain, insurance coverage was inconsistent.

"Some plans covered two visits, some six, some 12; some allowed you to refer yourself for treatment, while others required referral by a doctor," Alexander says. "That variation indicates a lack of consensus among insurers regarding what model coverage should be, or a lack of willingness to pay for it.”  

The Bloomberg study is being published online in the journal JAMA Network Open.  It was funded by the U.S. Department of Health and Human Services, National Institutes of Health and the Centers for Disease Control and Prevention.  

Lower back pain is the world’s leading cause of disability, but there is surprisingly little consensus on the best way to treat it. A recent series of reviews by an international team of experts in The Lancet medical journal found that low back pain is usually treated with bad advice, inappropriate tests, risky surgeries and painkillers.

“The majority of cases of low back pain respond to simple physical and psychological therapies that keep people active and enable them to stay at work,” said lead author Rachelle Buchbinder, PhD, a professor at Monash University in Australia. “Often, however, it is more aggressive treatments of dubious benefit that are promoted and reimbursed.”

The authors recommend counseling, exercise and cognitive behavioral therapy as first-line treatments for short-term low back pain, followed by spinal manipulation, massage, acupuncture, meditation and yoga as second line treatments. They found limited evidence to support the use of opioids for low back pain, and epidural steroid injections and acetaminophen (paracetamol) are not recommended at all.

The Media Needs to Report the Truth About Rx Opioids

By Michael Emelio, Guest Columnist

Initially I was going to write an article about why we desperately need our doctors to fight for us. How they may be the only ones who will be able to convince the powers-that-be to stop punishing legitimate pain patients and open their eyes to the real consequences of reducing our access to pain medication.

While I believe doctors speaking out would help immensely, I fear that few will step up and make a difference. After talking to half a dozen pain management doctors this year, I believe that they have been so programmed by the anti-opioid propaganda that many believe they're doing the right thing and fail to realize the true extent of the suffering they have caused.

Tragically, it may only be when they've lost enough patients to street drugs or suicide that they’ll wake up.

We obviously don't have enough doctors fighting for us. Writing our congressmen and senators hasn't helped either. To make matters even worse, the mainstream media have failed miserably to report our side of the war on opioids. Most of the time they bombard the public with propaganda from the CDC and DEA.

But right now, the media may be our best and only chance to make people understand what happens when you take prescription opioids away from patients who really need them.

That is why we need to direct our protests at the media. Let’s start demonstrating at the front doors of newspapers, radio and TV stations, and other news outlets. Flood them with phone calls and letters to the editor until they can no longer ignore OUR side of the story.

We need to utilize the biggest tool we have and that is the media!

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It's imperative that we get the truth out, until enough people are finally outraged to put their foot down. The whole country needs to know that the war on opioids is not only failing to reduce the number of overdoses but is making matters much worse. Millions of patients are suffering needlessly after having opioids taken away from them, leaving them no alternative for effective pain management other than street drugs or suicide.

That is what needs to be reported by the media.  And the only way these issues will ever get enough air time is if we put enough pressure on the media to do it.

What the hell is going on in our country? We're supposed to be the greatest country in the world, yet our government is directly causing millions to suffer needlessly. What is it going to take before the CDC and DEA realize they've gone too far?

Just how many easily avoidable deaths will it take to put an end this madness? Why is the mainstream media perpetuating this disaster by constantly reporting all the false facts rather than the truth? How many need to suffer and die before the truth is told?

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Michael Emelio lives in Florida. He suffers from degenerative disc disease, scoliosis and fibromyalgia.

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.

When Home Feels More Like a Prison

By Mia Maysack, PNN Columnist

Recently, my primary care doctor recommended I go in for a “sleep study,” which is exactly what it sounds like. My immediate thought was, “I've been doing my own sleep study for 28 years, want to know what I’ve learned?”

But jumping through society's hoops is an art form that I've somewhat mastered, so let's flash forward to the appointment that took place weeks later.  

I’m in a closet sized room with a sleep study “fellow” -- meaning I'm going to sit there and essentially explain my whole life story to him, and then I get to do it again with the actual doctor.  

He's asking me about sleep, naturally, so I tell him there’s no sense of regularity as I am fortunate if I get a couple solid hours of sleep a night. I ordinarily never reach my REM cycle, so eventually my body will crash and burn -- resulting in too much sleep that's damaging to my natural rhythm and makes the existing problem worse. 

Chronic pain impacts every aspect of my life, but they have no interest in discussing that because this appointment is only about sleep. How is it productive to disregard the biggest motivational factor in the situation at hand?  Guess I'll have to go to medical school to find out.

Then comes the medication talk, which has actually gotten easier over the years as I've stopped playing the role of a pharmaceutical guinea pig -- hence there being less to discuss. All of the drugs he recommends I have already tried, and I am now only interested in holistic approaches.

This is when he brings up anxiety and depression, almost as ammunition against me -- or so it felt like. Do I consider myself anxious or depressed? How long have I been afflicted?  Then comes a whole new list of pill suggestions that are thought to help anxiety and depression. I feel like we are both wasting our time.

 pain art courtesy of painexhibit.org

pain art courtesy of painexhibit.org

"Anyone would feel that way if they endured never-ending, agonizing pain,” I told him.   

He looks at my paperwork, sees that I've selected “homemaker” under employment and proceeds to say, “You don't work, so..."

This remark was declared in such a way as to suggest it is no wonder that I'm not tired, because I don't do anything all day.

"I actually work quite a bit," I objected and proceeded to list my duties.

I maintain the house while my lovely fiancé works. I cook, clean and do laundry. I have ownership over taking care of our doggy daughter, Aiva. I facilitate monthly group meetings, write newsletters, moderate online forums and volunteer countless hours. I also attempt to maintain a bite-size version of a social life and strive to make self-care a priority. 

Oh! And I live within a body that mostly feels as though it is deconstructing from the inside out.

He reported that naps are detrimental to our health, which is a comment I shrugged off because, clearly, he's never been chronically ill and has yet to be a parent.

People may peer into the window of my life and think to themselves how nice it must be to sit around at home all day while a man goes out to earn his keep as well as mine. But I've got some quick facts for anyone that would spend even a split moment envying the life of a chronic pain warrior.

I've been in the process of pursuing disability for just shy of four years -- which I began a decade after I really should have. But I was so hard on myself and likely a bit too proud, for this isn't at all the life I had envisioned. But I am grateful and committed to making the best out of it while demanding my ailments be validated.   

Prior to getting engaged, the place we live in was paid for in full by me. Even after becoming unwell to the point of stepping away from full-time work, I still continued to attempt working part-time outside of the home. But I was digging myself a hole in the ground, which led to the need of accepting even that was not in the cards, which led to the emergency need to access my retirement funds. 

I do not share this information for attention or pity but merely to drive the point home as to how crippling all of this can be on a person, especially over a long period of time. For some of us, home is less a place of tranquility and feels more like a prison.

Yesterday, I cleaned and organized our home, got laundry done, ran some errands and cooked a delicious healthy dinner. Today, I stayed in bed until 10:45 am, didn't leave the house, have difficultly navigating the stairs, hope to vacuum later if able, and have pain in every extremity. 

These are things that this fellow, as well as the doctor that graced us with his 30 second presence, didn’t seem to care about, let alone have the time to begin to understand. 

I'm thankful that I can do the things I can when I am able. It's imperative we take full advantage of the gifts we have while still able to do so, as we never know what tomorrow will bring. All it would take is a slight change in circumstance to make what may feel like the worst even worse.

Living as Spoonies, we are much too quick to accept being dehumanized. We even do it at times to ourselves.  May we all unapologetically let go of the weight of feeling we must somehow justify, explain, excuse or defend ourselves. Do what you can, where you are, with what you have, and know that is it both worthwhile and good enough.  

Benefits from my sleep study appointment include the mention of melatonin supplements, something I've tried in the past and will consider trying again, as well as “light therapy” to promote a regular internal clock which I plan to follow up on.

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Mia Maysack resides in Wisconsin.  She lives with chronic migraine, cluster headaches and fibromyalgia.  Mia is the founder of a wellness and life coaching practice for the chronically ill, and was recently honored by the U.S. Pain Foundation as its “Pain Warrior of the Month.”

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.

Ohio Banning Sales of Kratom and CBD  

By Pat Anson, PNN Editor

At a time when many pain sufferers are turning to natural supplements to relieve their pain, the state of Ohio is moving to ban two of the most popular ones.

The Ohio Board of Pharmacy voted Monday to classify kratom as a Schedule I controlled substance alongside heroin, LSD and other dangerous drugs. The move came two months after the board issued an advisory warning that sales of CBD-infused products are illegal under Ohio’s new medical marijuana program.

The pharmacy board considers kratom – which come from the leaves of a tree that grows in southeast Asia – a “psychoactive plant” that can cause hallucinations, psychosis, seizures and death. State health officials have identified six recent deaths in Ohio in which kratom “was indicated as the primary cause of death.”

A recent report from the Ohio Substance Abuse Monitoring Network (OSAM) raised the demonization of kratom to a new level by comparing it to heroin — and falsely claiming it was common for people to inject kratom.

“Participants reported that the drug looks similar to brown powdered heroin, produces similar effects as heroin, and is primarily used by individuals subject to drug screening and by people addicted to heroin who use the drug to alleviate opiate withdrawal symptoms,” the OSAM report warns.

“Participants reported that the most common route of administration for kratom is intravenous injection (aka “shooting”). Participants in the Akron-Canton region estimated that out of 10 kratom users, seven would shoot the drug and three would orally consume the drug (including drinking it as a tea).”

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Monday’s vote by the pharmacy board starts a months-long process of drafting new regulations for kratom. Public comments will be accepted until October 18.  Over 1,500 comments have already been received, most of them from kratom users asking the board to keep the supplement legal.

"The findings of the Ohio Board of Pharmacy… parrot the false propaganda of the U.S. Food and Drug Administration in their crusade to ban kratom," said Dave Herman, chair of the American Kratom Association, which represents kratom vendors and consumers. "The FDA has flooded state regulators, including the Ohio Board of Pharmacy with false claims and disinformation about the addiction profile and safety of this safe botanical plant.

“The nearly 5 million kratom consumers, and the tens of thousands of Ohio citizens, who safely consume kratom as a part of their health and well-being regimen should not have that freedom infringed upon by any regulation that is premised on bad science, inaccurate data provided by the FDA, and a deliberate attempt to manipulate the scheduling process by a federal agency.”

Kratom has been used for centuries as a pain reliever and stimulant, particularly in rural areas of Indonesia and Thailand.  In recent years, millions of Americans have discovered kratom and started buying it online or in “head shops” as a treatment for pain, addiction, anxiety and depression.

The Food and Drug Administration maintains that kratom is not approved for any medical use and insists on calling the plant an “opioid,” although its active ingredients are mitragynine and 7-hydroxymitragynine, two alkaloids that act on opioid receptors in the brain.

Kratom is already banned in Alabama, Arkansas, Indiana, Vermont, Wisconsin and the District of Columbia. There is speculation that the FDA and DEA may also seek to classify kratom as a Schedule I controlled substance, which would make sales and possession of the plant illegal nationwide. The DEA withdrew a plan to ban kratom in 2016 after a public outcry.

CBD Sales Banned

Ohio’s crackdown on CBD sales is not as restrictive as the ban on kratom. CBD infused products such as edibles, tinctures and oils usually contain little or no THC – the psychoactive ingredient in marijuana that makes people high. Many people use CBD to relieve pain and help them sleep.

Under state law, marijuana is defined as “all parts of a plant of the genus cannabis” and only state-licensed dispensaries can sell products made with CBD (cannabidiol). There will eventually be 56 dispensaries across the state, although none are expected to open until later this year.

Some retailers pulled CBD products from their shelves after the warning from the pharmacy board, but many have chosen to sell off their supplies first. One retailer in Dayton predicts the price of CBD products will soar once they are no longer widely available.

“The prices, if they’re going to skyrocket, are going to hurt customers’ pockets,” Rabi Ahmad told WHIO.com. “Senior citizens mostly buy the CBD. The young kids, they don’t buy CBD at all.”  

A spokesman for the pharmacy board said there are no state plans to enforce the ban on CBD sales, although local law enforcement agencies could. Also unclear is how the ban will affect online sales and shipments from out-of-state vendors.

“The public should have uninhibited access to hemp-derived products no matter what state you live in. We will continue to produce these products and support our retailers and customers through this moment of confusion,” Nic Balzer, CEO of QC Infusion, a Cincinnati-based manufacturer of CBD products, told Cincinnati.com.