Are You Suffering from Toxic Stress?

By Ann Marie Gaudon, PNN Columnist

There is no such thing as life without stress. It’s both a physiological and psychological response to a real threat or a perceived one. Stress tends to resolve itself naturally and in a timely way as the situation resolves, but “toxic stress” is different.

Frequent chronic stress, in the absence of adequate support, has harmful and potentially lasting effects on a person’s physical and mental health. It can affect anyone at any age, and no one is immune.

You are at risk for toxic stress when the stress is persistent and severe. You may have multiple stress factors and the body will react to them. One reaction will be that the body’s fight-or-flight, faint-or-freeze response is activated too often or for too long. This results in the release of stress hormones, one of which is cortisol. Long-term heightened levels of cortisol can become dysfunctional, inducing widespread inflammation and pain.

There is a very real biological link between stress, anxiety and pain. Toxic stress makes you more at risk for many types of chronic illness and pain, a dampened immune system, infections, mental health issues, poor emotional regulation skills, and even substance abuse. You can become sick and stay sick.

Toxic stress will also make you more vulnerable to chronic anxiety, which can include panic attacks. You may become hypersensitive to threat and to pain severity. Your behaviour will also likely change, which can mean trouble for relationships. In short, toxic stress will invade every thread of the fabric of your life.

Types of Stress

Center on the developing child, harvard university

Stress Buffers

Toxic stress can’t always be avoided – the loss of a beloved one, a nasty divorce, conflict in the home, chronic depression, feelings of betrayal and other life changes are sometimes inevitable.

However, a relationship with an adult who is loving, responsive and stable can help to buffer against the effects of stress and stop it from turning toxic. Other buffers include high levels of social support, consistent nurturing, and confidence in your problem-solving skills are just a few in an umbrella of many.

There are strategies you can do on your own to help buffer yourself against the consequences of toxic stress. Crucially, it is important to focus on what you can control, not what you have no control over. Toxic stress may include factors that are actually beyond your control, leaving you more distressed and overwhelmed, so it’s very important to become aware of the differences.

Write a list of what you can and cannot control. Take the reins on what you are able to, even if it’s as routine as what you’ll eat for dinner each day. Spend your time and energy on things that can improve your situation and can get a handle on. Remember, when we rail against that which we cannot control, that is when our suffering soars.

Healthy Living

Focus on a healthy lifestyle. Toxic stress can easily slide into unhealthy habits such as smoking, too much alcohol, overeating, overworking and the like. You may get temporary relief from them, but in the long-term these poor coping mechanisms will serve to worsen your stress. Eat well, exercise, get outside into nature, and try as best you can to get good sleep while practicing sleep hygiene.

Some people have a tendency to isolate themselves when stressed, yet one of the most protective buffers against toxic stress is support from people who care about you. Never underestimate the power of touch, including deliberate and welcome hugs. Reach out, engage with others, and make plans with others who are close to you. You want to be with adults who are soothing, safe and secure for you.

Find a relaxation technique that helps you lower your stress level. I’m a little different than some, because vigorous exercise is my happy place. Heart-pumping, blood-flowing, rushes of endorphins take my physical pain down and make me feel relaxed.

Alternatively, you might benefit from stillness with mindfulness practice, journalling, yoga or Tai Chi, body scans or progressive muscle relaxation techniques. Find your happy place and go there as often as you are able.

A very wise colleague of mine told me that we need three things to be happy: someone to love, a purpose, and something to look forward to. Go ahead and set goals, and plan for the future.

Toxic stress can have the sufferer believing that things will never improve, which leads to hopelessness and despair. Making plans for the future will give you some direction and purpose, as well as something to look forward to. When a good experience happens, optimism can drop by for a visit to remind you that life won’t always be so challenging.

As always, if you’re really struggling, reach out to a trained professional. We all need help at times in our lives, and one of those times might be when you’re dealing with toxic stress.  Your professional therapist will support you and help you with tools and strategies so that you can in turn support yourself.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website. 

DEA to Reimpose ‘Guardrails’ on Telehealth Opioids

By Pat Anson, PNN Editor

The U.S. Drug Enforcement Administration plans to reimpose rules that require doctors to meet face-to-face with patients before they are prescribed opioids and other controlled substances.

The rules were suspended in 2020 in the early stages of the Covid-19 pandemic so that doctors and patients could connect remotely via telehealth – also known as telemedicine --  to get medications prescribed without an in-person meeting.

But when the federal government ends the Covid public health emergency on May 11, the DEA plans to restore “appropriate safeguards” on medications it considers addictive. Patients will still be able to get prescriptions for antibiotics, statins, insulin and other common medications through telehealth, without a physical examination or meeting with a doctor.

“DEA is committed to ensuring that all Americans can access needed medications,” said DEA Administrator Anne Milgram said in a statement.  “The permanent expansion of telemedicine flexibilities would continue greater access to care for patients across the country, while ensuring the safety of patients. DEA is committed to the expansion of telemedicine with guardrails that prevent the online overprescribing of controlled medications that can cause harm.”  

Under the DEA’s proposed rules, Schedule II controlled substances such as oxycodone and hydrocodone cannot be prescribed without first having an in-person meeting. Refills would then be allowed via telehealth.

Other drugs that are classified as Schedule III, IV or V substances – such as Xanax (alprazolam) and Suboxone (buprenorphine) could still be prescribed for 30 days via telehealth, but any refills will require an in-person meeting.

The DEA rules were developed in conjunction with the Department of Health and Human Services (HHS) and the Department of Veterans Affairs. Public comments on the rules can be submitted through the Federal Register by clicking here.

“Improved access to mental health and substance use disorder services through expanded telemedicine flexibilities will save lives,” said HHS Secretary Xavier Becerra. “We still have millions of Americans, particularly those living in rural communities, who face difficulties accessing a doctor or health care provider in-person.”

Drug overdoses rose sharply during the pandemic, with nearly 107,500 drug deaths reported in the 12-month period ending in August, 2022. About 70% of the fatal overdoses involved illicit fentanyl and other street drugs, not prescribed medications.

Why Women Are More Likely to Suffer Migraines

By Pat Anson, PNN Editor

German scientists may have finally proven a link between hormones and migraines, and why women suffer migraines at triple the rate that men do. In studies on animals and humans, researchers found that calcitonin gene-related peptides (CGRPs) increase in females during menstruation.

CGRP is a protein that binds to nerve receptors and dilates blood vessels in the brain, causing migraine pain. Several medications are now on the market that inhibit CGRP, one of the biggest innovations in migraine treatment in decades.

“This elevated level of CGRP following hormonal fluctuations could help to explain why migraine attacks are more likely during menstruation and why migraine attacks gradually decline after menopause,” says Bianca Raffaelli, MD, of Charité – Universitätsmedizin Berlin in Germany. “These results need to be confirmed with larger studies, but we’re hopeful that they will help us better understand the migraine process.”

Raffaelli and her colleagues measured CGRP levels in the blood and tear fluid of 180 women during their menstrual cycles, and found that those who suffer from episodic migraines had significantly higher concentrations of CGRP during menstruation, when estrogen levels are low.

“This means that when estrogen levels drop immediately before the start of a menstrual period, migraine patients release more CGRP,” said Raffaelli, lead author of a study published in the journal Neurology. “This could explain why these patients suffer more migraine attacks just before and during their monthly period.”

In women who take oral contraceptives, there were hardly any fluctuations in their estrogen or CGRP levels. The same was true for postmenopausal women.

“Taking birth control pills and the end of menopause do in fact bring relief for some female migraine patients. But as our study also shows, there are women who suffer from migraine even without any hormonal fluctuations. We suspect that other processes in the body play a role in triggering attacks in those patients. After all, CGRP isn’t the only inflammatory peptide that can cause a migraine attack,” said Raffaelli.

The study also suggests that measuring CGRP levels in tear fluid is feasible and warrants further investigation, because accurately measuring CGRP in the blood is challenging due to its short half-life.

The research team now plans to study how other physical processes are influenced by the menstrual cycle, such as blood vessels and brain function. They also plan to take a closer look at CGRP levels in men of varying age groups.

Migraine affects more than 37 million people in the United States, according to the American Migraine Foundation. In addition to headache pain, migraine can cause nausea, blurriness or visual disturbances, and sensitivity to light and sound.

Staying Active Is Vital for People with Pain

By Joanne Dickson, Edith Cowan University

Chronic pain affects around one in five people and is considered “chronic” when it persists beyond the expected healing time, typically three months or longer.

Along with physical problems, chronic pain can impact a person’s daily activities, employment, lifestyle and mental health.

Doing things you love and having goals are fundamental for wellbeing because they give meaning and purpose. But pain can make doing the activities you enjoy psychologically, physically and/or emotionally very challenging.

Our new research shows the way a person with chronic pain responds to not being able to participate in the activities or goals they value can impact their mental wellbeing – even more so than their pain levels.

We surveyed more than 300 people living chronic pain (that wasn’t related to cancer) about their mental wellbeing, “pain intensity” and how much pain interfered with the everyday pursuits and activities that mattered to them. We differentiated chronic pain from cancer pain due to the differing prognoses and treatments available, and the unique psychological and social factors associated with cancer pain, such as concern about death.

We found pain that disrupted daily life activities, rather than the intensity of the pain, posed the biggest threat to a person’s mental wellbeing.

When pain interferes with a person’s engagement in meaningful daily activities, it causes distress and decreases wellbeing.

The research suggests it’s possible for people to find ways to maintain their mental wellbeing, even when their pain intensity is high, so long as they’re able to maintain aspects of life that are important to them, such as relationships and work.

Find Other Ways to Do Things

We found personal motivational traits – specifically, goal flexibility (adjusting goals in response to changing circumstances and setbacks) and tenacity (persistently striving to achieve a desired goal under difficult circumstances) – were associated with increases in mental wellbeing for people living with chronic pain.

Although flexibility and persistence were both associated with increased mental wellbeing, the capacity to flexibly adjust to setbacks or obstacles had the most significant positive effect in maintaining one’s mental wellbeing.

Flexibility appears to act as a protective factor against the impacts of pain interference on mental wellbeing, to a greater extent than personal tenacity or persistence.

There is often more than one way to modify or adapt an activity when difficulties arise. A walk on the beach with friends, for instance, may be adjusted to meeting at the beach for coffee to fulfil the same goal or value: social connectedness.

Focus on What You Can Do, Not What You Can’t

Psychological processes that can help people to live well in the face of long-term pain have long been overlooked. Research has traditionally focused on unhelpful thought processes that perpetuate or exacerbate mental distress. For example, pain catastrophising and repeated negative self-criticism.

Pain management and mental health are multi-faceted. Previous research has shown pain management should take into account physical factors (age, sleep, injury, disease) and social factors (employment, social support, economic factors).

Our findings add to this body of knowledge. For those living with pain, reappraising and adjusting meaningful life activities and goals, when needed, in response to setbacks or life challenges can help maintain mental wellbeing.

These findings can inform the development of psychological supports for people with chronic pain. In turn, these supports could identify internal strengths, resources, positive coping strategies, self-efficacy, hope and wellbeing – and promote psychological strengths rather than deficits.

Joanne Dickson, PhD, is a Professor of Psychology & Mental Health at Edith Cowan University in Australia. Joanne’s main research interests are in the areas of goal-motivation, prospective cognition and emotion-regulation processes in mental health and well-being. She collaborates with national and international researchers in Australia, the UK and USA.  

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

Pentagon Declares War on Poppy Seeds

By Pat Anson, PNN Editor

The U.S. Department of Defense is escalating its war against opioids beyond just oxycodone, hydrocodone and other pain medications.

In a February 17 memo, a top Pentagon official warned all military service members that eating foods containing poppy seeds could result in a failed drug test.

“Recent data suggests poppy seeds varieties may have higher codeine contamination than previously reported. Consumption of poppy seed products could cause a codeine positive urinalysis result and undermine the Department’s ability to identify illicit drug use. Out of an abundance of caution, I find protecting Service members and the integrity of the drug testing program requires a warning to avoid poppy seeds,” wrote Gilbert Cisneros, Jr., the Undersecretary of Defense for Personnel and Readiness.

Cisneros did not specific what the “recent data” was or where it came from. Tiny black seeds from the poppy plant – most of which come from Afghanistan -- can become contaminated during harvesting with trace amounts of codeine, morphine and other opiates. Drug users have found they can then use unwashed seeds to make a potent homemade tea to relieve pain.

Given how widely used washed poppy seeds are in muffins, cookies, salad dressings and cosmetics, the threat posed by them may sound rather comical. But some organizations take it very seriously.

The Center for Science in the Public Interest (CSPI) has petitioned the Food and Drug Administration to set a safe threshold for opiate alkaloids in imported poppy seeds, citing a study that claimed 19 people in the U.S. suffered fatal overdoses after ingesting poppy seeds in recent years.

“The time is overdue for the FDA to establish standards that will protect U.S. consumers from ingesting dangerous levels of opiates through the food supply,” said Peter Lurie, MD, President of CSPI.  

In 2019, the Drug Enforcement Administration even classified unwashed poppy seeds as a Schedule II controlled substance, claiming they were “qualitatively similar” to opioid pain medications.

“Unwashed poppy seeds are a danger to the user and their abuse may result in unpredictable outcomes including death,” the DEA said.

Eating poppy seeds could be risky for someone taking a drug test.  A 2020 study found that consuming just few seeds in a muffin or bagel could result in a positive drug test – a finding that could get a patient dismissed by their doctor or an employer refusing to hire a job applicant.

The Pentagon may also be trying to save money with its new directive. Simple urine drug screens performed in a doctor’s office are relatively cheap – and often wrong. False positive results should be confirmed with a mass spectrometry test performed in a laboratory, but those tests usually cost thousands of dollars.  It’s cheaper to just tell military personnel to stop eating bagels.

“The Military Departments are hereby directed to notify Service members to avoid consumption of all poppy seeds to include food products and baked goods containing poppy seeds. Service members are directed to work with their local legal office for any related concerns with urinalysis results,” Cisneros wrote in his memo.

The Pentagon and Department of Veterans Affairs (VA) have long taken a dim view of opioids. In recently updated medical guidelines, the agencies recommend that opioid medications not be used to manage non-cancer chronic pain.   

Limiting Supply of Rx Opioids Fails to Achieve Goals

By Pat Anson, PNN Editor

Limiting initial prescriptions for opioid pain medication to 5-days’ supply did not reduce the rate at which patients in New Jersey transitioned to long-term opioid use, according to a new study at Rutgers University.

In 2017, New Jersey became one of the first states in the country to impose a mandatory 5-day limit on initial opioid prescriptions for acute pain. If a patient needed more, their doctor would have to write a new prescription, enroll them in a pain management program, and counsel them on the risks of opioid addiction.

At least 38 other states adopted similar laws, with the goal of reducing opioid diversion, misuse and overdose. Six years later, there is little evidence that New Jersey’s 5-day limit saved lives or accomplished any of its goals.

“This policy’s apparent failure to achieve its goals illustrates the extreme difficulty of solving healthcare problems by dictating physician behavior,” said senior author Stephen Crystal, PhD, director of the Rutgers Center for Health Services Research.

Crystal and his colleagues analyzed pharmacy data for over 130,000 New Jersey Medicaid patients who were prescribed opioids for the first time between 2014 to 2019. Their findings, recently published in the Journal of General Internal Medicine, show that new opioid prescriptions fell at a monthly rate of less than one percent (0.76%) after the 5-day limit was imposed, a decline that was about half the monthly rate (1.62%) prescriptions were falling before the limit took effect.

Doctors were writing fewer prescriptions for opioids in New Jersey and other states long before limits on the supply were even passed. Opioid prescriptions nationally are now at their lowest level in over 20 years.

“Opioid prescribing was already decreasing before this policy went into effect,” said lead author Peter Treitler, a research project manager at the Rutgers Institute for Health, Health Care Policy and Aging Research. “And so, by the time this New Jersey policy went into effect, it really didn’t change prescribing practices very much, at least in the New Jersey Medicaid population.”

An earlier study by the Rutgers research team found that medically treated overdoses in the Medicaid population tripled in New Jersey after the 5-day limit was imposed. Most of the overdoses involved illicit fentanyl and other street drugs, not prescription opioids.

Less than a third of New Jersey’s overdose survivors were even diagnosed with a chronic pain condition, suggesting the state’s focus on limiting pain medication was misdirected. Most people who overdose suffer from substance abuse disorder, depression or other mental health issues. And most overdoses involve illicit fentanyl and other street drugs, not prescribed medication.

In 2022, there were nearly 2,900 drug deaths in New Jersey – about 30% more than the number that overdosed in 2016, the year before the state’s 5-day limit became law.  

DEA Considers Synthetic THC Illegal

By Pat Anson, PNN Editor

The Drug Enforcement Administration considers a synthetic form of THC — the psychoactive compound in cannabis and hemp — a controlled substance that is illegal under federal law.

Hemp was legalized federally under the 2018 Farm Bill, in part because hemp contains only trace amounts of THC. However, some companies developed a synthetic form of hemp-derived THC — called THC acetate ester (THCO) — to give consumers an intoxicating effect. Because THCO was modeled after the THC found in hemp, they claimed it could be legally sold and consumed.

However, in a recent letter to Rod Kight, an attorney who specializes in cannabis law, the head of the DEA’s Drug & Chemical Evaluation Section said the agency considers delta-8 and delta-9 products containing THCO to be Schedule I controlled substances, which are illegal to sell or possess.

“Delta-9-THCO and delta-8-THCO do not occur naturally in the cannabis plant and can only be obtained synthetically, and therefore do not fall under the definition of hemp. Delta-9-THCO and delta-8-THCO are tetrahydrocannabinols having similar chemical structures and pharmacological activities to those contained in the cannabis plant,” the letter states.

Kight said he’s been telling clients and personal friends that THCO is potentially dangerous.

“Although I do not always agree with the DEA’s view on cannabis matters, I agree with this opinion and, frankly, am not surprised,” he wrote.  “It has always been my view that THCO is a controlled substance under federal law. Although it can be made from cannabinoids from hemp, THCO is not naturally expressed by the hemp plant. It is a laboratory creation that does not occur in nature, at least not from the hemp plant.”

As Kight points out in his blog, the DEA letter does not address delta-8 or delta-9 THC, which are natural and derived from hemp. Although those substances are considered legal at the federal level, over a dozen states have banned products containing them.

In states where they remain legal, delta-8 and 9 are widely available in candy, gummies, cookies, tinctures and beverages. Some companies claim the products have “uniquely potent effects on pain” and other health conditions, even while admitting there is little evidence to support those claims.

The FDA became so alarmed by the profusion of delta-8 and delta-9 THC products — and their marketing to children — that it sent letters to five companies in 2022 warning them to stop making unsubstantiated medical claims.

"These products often include claims that they treat or alleviate the side effects related to a wide variety of diseases or medical disorders, such as cancer, multiple sclerosis, chronic pain, nausea and anxiety," FDA Principal Deputy Commissioner Janet Woodcock, MD, said in a statement. "It is extremely troubling that some of the food products are packaged and labeled in ways that may appeal to children.”

The FDA says it had received over 100 reports of adverse events involving delta-8 THC, with poison control centers reporting over 2,300 cases, including one that involved the death of a child.

Is Your Personal Health Data For Sale?

By Pat Anson, PNN Editor

Many U.S. consumers believe their personal health information is protected under the Health Insurance Portability and Accountability Act (HIPPA), a federal law that requires healthcare providers and insurers not to share a patient’s sensitive health information without their consent or knowledge.

A new study on consumer data brokers and a federal complaint against a popular drug discount service show otherwise, with patient names, social security numbers, email addresses, prescription drug use and other personal information routinely being sold to third parties.

The Duke University study on data brokers focused only on mental health records, but gives you a good idea of what’s available on the open market. When researcher Joanne Kim contacted 37 data brokers asking to buy mental health data on millions of patients, 11 of them offered to sell her the requested data, which included information about whether an individual was being treated for depression, anxiety or insomnia, and if they were prescribed drugs such as Prozac or Zoloft.

The asking price for the information was relatively cheap, with one broker offering data on 10,000 aggregated patient records for $2,000 – or 20 cents per record. The cost was even cheaper if the data was ordered in volume; 435,780 records were available for 6 cents each.

Many of the brokers did not provide Kim with a full explanation about their data or where it came from, making it difficult to determine whether the company was offering “deidentified” information. Some firms openly advertised data that included individual names, addresses, phone numbers and emails. One broker even offered to sell her the IP addresses and browser history of patients.

“This research highlights a largely unregulated data brokerage ecosystem that sells sensitive mental health data in large quantities, with either vague or entirely nonexistent privacy protections,” Kim wrote in her report. “Data brokers are collecting, aggregating, analyzing, circulating, and selling sensitive mental health data on individuals. This comes as a great concern, especially since the firms seem either unaware of or loosely concerned about providing comprehensive privacy protections.”

Due to the stigma associated with mental health problems, Kim says the easy availability of personal health data puts millions of patients at risk of discrimination from employers and insurers, or even theft from scammers who prey on vulnerable populations.

“The nation is in dire need of a comprehensive federal privacy law, and this report recommends that the federal government should also consider generally banning the sale of mental health data on the open market,” she wrote. “Such a law should include provisions that allow consumers to opt out of the collection of their data, gain access to their information, and correct any discrepancies. Furthermore, data brokers should be obligated to be more transparent about their use and exchange of data, as well as have more controls in place for client management.”

One potential “client” that Kim doesn’t mention is law enforcement. In 2020, the Drug Enforcement Administration asked data brokers to submit bids on a potential contract for a surveillance program that would track at least 85% of U.S. prescriptions for opioids and other controlled substances. The DEA was seeking “unlimited access” to this prescription data, including the names of prescribers and pharmacists, types of medication, quantity, dose, refills and forms of payment.

While the contract was never awarded, it remains unclear what the DEA planned to do with the information or if it has found other ways to collect the data.

GoodRx Settlement

Where and how is personal health data collected? It could be as simple as a consumer trying to save money on medications.

The Federal Trade Commission recently reached a $1.5 million settlement with prescription drug discount provider GoodRx for failing to notify consumers that it was selling their information to Facebook, Google and other third parties for advertising purposes.

GoodRx offers considerable savings to patients who enroll in its free drug discount program, and makes money by selling their health and contact information to third parties. For example, according to the FTC complaint, GoodRx shared patient health data with Facebook, which then targeted them with advertisements for specific drugs to treat their health conditions.

“GoodRx’s sharing of personal and health information has revealed highly sensitive and private details about its users, most of whom suffer from chronic health conditions. This has led to the unauthorized disclosure of facts about individuals’ chronic physical or mental health conditions, medical treatments and treatment choices, life expectancy, disability status, parental status, substance addiction, sexual and reproductive health, and sexual orientation, as well as other information,” the FTC said.

“Disclosure of this information without authorization is likely to cause GoodRx users stigma, embarrassment, or emotional distress, and may also affect their ability to obtain or retain employment, housing, health insurance, disability insurance, or other services.”

In a press release, GoodRx said the FTC was focusing on an “old issue” that it addressed and corrected three years ago. “Millions of Americans use GoodRx to save on their healthcare, and we take strong measures to ensure they can trust us with their information,” the company said.

Data mining isn’t limited to healthcare providers, advertisers, internet companies or law enforcement. Medical researchers also use it, to track and evaluate patient conditions and the effectiveness of treatments. Some would also like to use data to predict patient outcomes.

In a new study, researchers at the University of Alberta said they had devised a form of artificial intelligence -- based on patient health data -- that can predict with 90% accuracy whether a patient is at risk of an adverse outcome from opioid prescriptions. Researchers say their model could be used someday to warn doctors about high-risk patients, so they can prescribe another drug or give smaller doses.

A Get Well Message to the Pain Community

By Mia Maysack, PNN Columnist

One of the things that has distanced me from hands-on participation in the pain community is the persistent negativity. I’m not the only advocate that has picked up on this, nor alone in feeling the need to step away as a result.

Don’t get me wrong. As a former healthcare provider, I understand and am sensitive to the fact that people aren’t chipper on their hardest days or when they’re experiencing a tremendous amount of discomfort. And being a patient myself, there have been and will continue to be moments where I drop the ball in regards to being “positive.” My vision is literally and figuratively blurred on those days -- to the point where it’s not easy to see any bright side or silver lining.

But each attempt I make to provide meaningful commentary on what has assisted, changed or even saved my life is met with objections. One of the most infamous lines goes something like: “Some of us have incurable conditions!”

It’s as if my post bacterial-meningitis intractable mega-migraines, irreparable cellular nerve damage, evolving arthritis, immobilizing fibromyalgia, and the fact I’ve lived this way for two decades and counting doesn’t have any merit or meaning.

It’s quite frustrating to devote so much of your experience, skills and compassion to people who condemn you for attempting to transform your suffering – while they contribute to that very suffering. The whole “misery loves company” thing is a bit played out with me. I believe a much more productive use of energy is to get to the root of our misery, as opposed to clinging to it and passing it on.

Any time I offer up alternative pain modalities that have proven helpful for me, along with millions of others for thousands of years, while always treading lightly on the eggshells of disclaimers about everything not being for everyone, nothing can completely fix our problems, it’s a process of trial and error, etc. –  I’m torn down by the very same people.

How is this supposed to elevate anyone or make anything better?

I’ve been mocked, ridiculed, silenced and even threatened when mentioning things such as mindfulness, meditation and neuroplasticity. But companies have invested in and now offer all of those therapies.

This is in part what led me to step away from patient support groups, because most don’t desire actual support, but seek more space to complain. I wholeheartedly understand and believe it is of utmost importance for our grievances to somehow exist outside of ourselves, but I’ve found that support can only get us so far.  It then becomes more about self-help, which is something that most people have a difficult time realizing or pursuing, especially when illness or pain are major obstacles blocking the way.

Sometimes, those of us who have risen from the depths of our own versions of hell are judged and labeled by remarks that we couldn’t possibly be sick. That somehow, we’re more privileged than the next patient or had opportunities that others don’t have and cannot get.

In actuality,  we are revolutionaries who saw that treatments were not working and made a conscious decision to devote our lives to assisting others through their hardships. Not because anything is gained or money made, but because it is the right thing to do. We were once consumed by the fire as well, but now venture out with buckets of water for the rest of you.

It is mostly thankless, often torn down, and difficult to take on the weight of what can feel like hatred, all the while attempting to balance and manage the ailments that already threaten us. Irony is found in the fact that so much of the condemning originates from people who do the absolute least for this community. 

The time has come to understand this conduct as a sickness in itself, and that it causes a negative ripple effect that limits us all from the ability to move forward.

I’m thrilled to see articles about things such as how healing is just as important as pain relief, or how childhood experiences that seem to have little to do with our current conditions can still directly impact how our bodies and minds feel.  And it’s always encouraging to come across a list of low-to-no side effect modalities to at least consider, if not try.

This doesn’t mean belittling anybody's experience. Release the illusion of stories you’ve always told to yourself or were told to you. Make room for a new chapter and fight for your lives, not against those who want you to thrive. And get well soon.

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

New Test Predicts Effectiveness of CGRP Drugs for Migraine

By Pat Anson, PNN Editor

CGRP inhibitors have been one of the biggest innovations in migraine treatment in decades. CGRP stands for calcitonin gene-related peptides, a protein that binds to nerve receptors in the brain and triggers migraine pain. Since 2018, the FDA has approved over half a dozen CGRP inhibitors for migraine prevention and treatment.

The problem with anti-CGRP therapies – besides their high cost – is that they only work for about half the people who take them.

A new test may take some of the guesswork out of CGRP therapy, by predicting with about 80% accuracy which patients will respond to CGRP inhibitors before treatment begins.  In a small study published in the journal Cephalalgia, Harvard Medical School researchers found that most migraine patients with non-ictal cephalic allodynia -- pain sensitivity experienced in-between migraine attacks – did not respond to CGRP treatment. Conversely, most patients without non-ictal cephalic allodynia did respond to CGRP therapy.  

Determining which patients have or don’t have cephalic allodynia is relatively easy, through a novel Quantitative Sensory Testing (QST) algorithm that measures how sensitive patients are to heat, cold and being poked in the skin with a sharp object. The test identified CGRP responders with nearly 80% accuracy and non-responders with nearly 85% accuracy.

“Detection of non-ictal cutaneous allodynia with a simplified paradigm of QST may provide a quick, affordable, non-invasive, and patient-friendly way to prospectively distinguish between responders and non-responders to the prophylactic treatment of migraine with drugs that reduce CGRP signaling,” wrote lead author Rami Burstein, MD, Professor of Anesthesia, Harvard Medical School.

Burstein helped develop the QST test in collaboration with CGRP Diagnostics. The test can be done in about five minutes in a doctor’s office.

“This is all about improving outcomes for people suffering from migraines and so we strongly recommend that all potential anti-CGRP recipients have the test done prior to prescription,” said Mark Hasleton, PhD, CEO of CGRP Diagnostics. 

“This will help provide migraine sufferers with either the best chance for treatment success for likely responders, or to enable rapid transition for likely non-responders to other treatment strategies, thus avoiding the misery of treatment failure. CGRP Diagnostics is currently in discussions with multiple key pharma and payor players in this area, with the expectation that such a test will become a prerequisite prior to anti-CGRP prescription.”

A surprise finding from the study is that cutaneous allodynia may be related to genetic factors that cause pain sensitivity, rather than the frequency or severity of migraines.

“This study unveils the mechanism of physiological response to anti-CGRP therapy and could fundamentally change the anti-CGRP therapy field,” said Iris Grossman, PhD, Founding Scientific Advisor at CGRP Diagnostics. “We now have an objective tool to tailor early and effective therapy to migraine sufferers. This novel test holds the potential for earlier access to anti-CGRP therapy, reduced need for prior treatment failures with generics, and enhanced formulary access. It also enables non-responders to rapidly transition to other treatment strategies, preventing a great deal of suffering and frustration for all.”

A 2020 survey of migraine patients by Health Union found that 52% of those who tried a CGRP therapy switched brands because the treatment didn’t work or because they didn’t like the side effects, such as constipation and weight gain.

CGRP medications are not cheap. Eight doses of Nurtec, the migraine treatment endorsed by Khloe Kardashian, can cost over $1,000 without insurance.

Migraine affects more than 37 million people in the United States, according to the American Migraine Foundation. In addition to headache pain, migraine can cause nausea, blurriness or visual disturbances, and sensitivity to light and sound. Women are three times more likely to suffer from migraines than men.

New VA Guideline: Opioids Should Not Be Used for Chronic Pain

By Pat Anson, PNN Editor

The U.S. Department of Defense (DoD) and Department of Veterans Affairs (VA) have doubled down on a guideline first released in 2017 that strongly recommends against the use of opioids for chronic pain.

In an updated clinical practice guideline, the agencies continue to recommend that opioids not be used to manage chronic non-cancer pain, especially in younger patients, and that long-acting opioids not be used to treat patients with short-term, acute pain.

The VA/DoD guideline will potentially affect millions of service members, veterans and their families. Nearly 1.5 million Americans serve in the armed forces and over 800,000 in the National Guard and Reserves. The Veterans Administration provides health services to another 6 million veterans and their families.

The updated guideline was quietly released in May 2022, but is only drawing attention now in a mostly favorable review published in the Annals of Internal Medicine.

“Compared with the 2017 recommendation against initiation of long-term opioid therapy, the updated recommendation against opioid therapy in general for chronic pain is broader and reflects the evidence that opioid therapy for any duration may be harmful,” wrote lead author James Sall, PhD, Director of VA’s Office of Evidence-Based Practice.

“Ultimately, despite finding some evidence for a small improvement in musculoskeletal and noncancer neuropathic pain, the guideline development group maintained that the potential for catastrophic harms of opioids and serious adverse events, especially with long-term use, outweighed any potential benefits of temporarily improved pain severity and functional status in patients with chronic pain.”

‘Potentially Transformative’ for U.S. Healthcare

The updated opioid guideline has 20 recommendations, nine of which are based on weak or inconclusive evidence. Unlike the recently revised CDC opioid guideline, there were no public hearings or opportunities for the public to comment or provide input. There is also no discussion of dose thresholds or morphine milligram equivalents (MME), suggesting the authors believe that any dose of opioids is potentially risky.

Three new recommendations in the new VA/DoD guideline involve opioid tapering, mental health evaluations, and the use of buprenorphine to treat pain.

The guideline urges doctors to consider using buprenorphine instead of full agonist opioids for patients needing opioids daily for chronic pain. Although the quality of the evidence for this recommendation was deemed “insufficient,” the VA/DoD believe buprenorphine as a partial agonist has less risk for overdose and misuse, and is less likely to cause euphoria.

Buprenorphine is a Schedule III opioid that is FDA approved for pain when used alone. Buprenorphine is also used to treat opioid use disorder when combined with naloxone in drugs like Suboxone. The DEA recently eliminated the “X-Waiver” program for buprenorphine, which is likely to significantly increase the number of doctors that prescribe it and the number of patients that receive it.

An editorial published in the Annals of Internal Medicine called the recommendation that buprenorphine be used for pain “potentially transformative” and "likely to expand into the greater U.S. healthcare system."

"The updated VA/DoD guideline is both conservative and radical," wrote co-authors Chinazo Cunningham, MD, and Joanna Starrels, MD, both from Albert Einstein College of Medicine. "Although the VA/DoD guideline recommends that buprenorphine be prescribed for chronic pain if daily opioids are prescribed, the recommendation itself is likely to change decision-making about whether opioids should be prescribed."

Although several recent studies have found that opioid tapering significantly raises the risk of an overdose, withdrawal or mental health crisis, the VA/DoD guideline found there is “insufficient evidence to recommend for or against any specific tapering strategies.” It only recommends that doctors and patients “collaborate” on reducing opioid doses and that tapering not be forced.

“The potential benefits of opioid tapering outweighed the potential harms of opioid withdrawal,” the guideline claims.

Before opioids are prescribed for either acute or chronic pain, the guideline recommends that the mental health of patients be evaluated for depression, anxiety, psychotic disorders and suicide. Although some patients may resent being screened for mental health problems, the guideline says “it is better for providers to know about underlying behavioral health comorbidities than to initiate long-term opioids without this clinical knowledge.”

The revised guideline reaffirms previous recommendations that benzodiazepines not be co-prescribed with opioids and that patients on long-term opioid therapy be regularly screened with urine drug tests “to decrease the risk of self-directed violence.”

Opioid prescribing to veterans, family members and those on active duty has declined significantly in recent years, as it has for the rest of the population. The revised VA/DoD guideline notes – without a hint of irony – that reduced prescribing has led to an increased use of illicit opioids by veterans and higher overdose rates.

How to Live Longer and Healthier with Chronic Illness

By Barby Ingle, PNN Columnist

Have you ever wondered what living with chronic illness or a rare disease does to your lifespan? I have.

My primary care doctor recently conducted a seminar about living longer and healthier. He gave the attendees a great resource: a “health span” guide that outlines five ways to enhance your day-to-day life and live longer. The guide got me thinking. As a person with rare diseases and chronic pain, can they help me achieve my goal of living to 100 years old? 

Step 1 of the guide is to eat a Mediterranean-style diet. Studies show that people who eat a diet rich in fruits, vegetables, fish, whole grains, nuts and legumes live longer and have fewer instances of type 2 diabetes, obesity, heart disease and cancer.

I believe in individualized care for my health. As I have talked about in the past, I did microbiome testing to assess my gut health, using an at-home test made by a company called Viome. The results I received revealed that many of the fruits, veggies and nuts that I loved were not suitable for me because of my genetics. My DNA would rather have me eat a rack of lamb than a tomato!

I think getting that kind of detailed, personalized health information is better than following a one-size-fits-all diet.

Step 2 of the health span guide is to exercise often. It states that people who exercise between 2.6 and 4.5 hours per week have a 40% lower risk of dying. 

I have found that exercise means different things to different people. When I was younger, I was an athlete. Today, I cannot imagine doing a simple jumping jack. Nevertheless, moving as best we can each day, without going into a pain flare, sounds reasonable. That is what I strive to achieve.

I try to do what I can physically and not get too down on myself for the fatigue, pain and times when my body is dystonic. I hope that will be enough “exercise” to reduce the risk of other chronic illnesses, such as diabetes or dementia. I know people who have diabetes who were able to exercise, change their eating habits, and live longer. But my father, ten years after being diagnosed, still passed away early. 

Step 3 of the guide is to manage your stress and mental health. Those of us with rare and chronic conditions often have increased anxiety. Who wouldn’t be depressed learning how to live with a new normal? Chronic stress reduces life span and ages us faster from the chemicals and bodily changes that occur.

Step 4 of the guide is to make good sleep a habit, which is not easy when you have chronic pain. But a night with 7 or 8 hours of restful sleep can help reduce pain levels and lead to a better, more productive tomorrow.

When our sleep is disturbed long-term, it can affect our mood, organ function and contribute to an early death. I remember back in 2009, before I began infusion therapy, I tried many recommendations for better sleep, such as a warm drink before bedtime, having a set time to go to bed and wake up, and cutting out caffeine. After the infusions, when my pain was better managed, I realized just how bad my sleeping was and how much I needed 8 hours of sleep. Here are some tips for better sleep from the CDC.  

Step 5 of the guide is to build strong social circles. Having at least six different social connections each month has been associated with better health. I have found that people who are not chronically ill have difficulty understanding why we don't get better. They make comments like, "Are you still sick?" and "You’re still not feeling better yet?”

It is sad that it is harder for us to make and keep friends who are healthy and happy. A network of friends is essential for many reasons. This New York Times article on “How to Be a Better Friend” has some tips on how to improve our connections with others. 

I want to live longer and healthier, and to work towards it with good connections, preventative care and palliative care. We live in a great time when medical care and genetic testing are advancing, helping us live healthier. Being in the best shape possible to live past our potential expiration dates will help us enjoy our limited time here on earth. It all goes back to being the best you, so that you can fulfill your earthly purpose while participating in society. 

Living longer comes from individualized care and making the most of each aspect of your life. Changing how you live, respond, and act today can make your life longer and more meaningful.

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

Florida Study Blames Cannabis for Hundreds of Deaths

By Pat Anson, PNN Editor

Advocates of medical marijuana – or cannabis use in general – have long said you can’t overdose on cannabis and that the natural plant is even “safer than many foods.”   

But researchers at Florida Atlantic University say cannabis products – particularly synthetic cannabis – are riskier than many people believe. In a study recently published in the Journal of Nursing Scholarship, they called cannabis “a legitimate public health concern” that has killed hundreds of Floridians in recent years.  

Analyzing 2014 to 2020 data from the Florida Department of Law Enforcement, researchers found that 386 people died as a result of drug intoxication caused by cannabis use. It’s important to note that the vast majority of those deaths (98.7%) involved accidents such as motor vehicle crashes, with a handful of deaths caused by murder or suicide. No overdoses were reported.

Most of the Florida deaths also involved other substances such as alcohol, opioids, heroin and cocaine. In nearly two-thirds of the deaths, synthetic cannabinoids such as K2 or Spice were involved. Synthetic cannabinoids are chemicals sprayed onto dried, shredded leaves that mimic the effect of cannabis, but are often quite stronger.  

“Synthetic cannabinoids are part of the new psychoactive substances that are two to 100 times more potent than THC, the main psychoactive compound in marijuana,” said lead author Armiel Suriaga, PhD, an assistant professor in FAU’s College of Nursing.

Suriaga and his colleagues found that over 13 percent of those who died had cardiac-related conditions such as high blood pressure, atherosclerosis, cardiac arrhythmias or an enlarged heart. There was one death from an ischemic stroke and one death from a hemorrhagic stroke, both related to synthetic cannabis use.

“The persistent deaths from cannabis and synthetic cannabis use are a legitimate public health concern,” said Suriaga. “The public should remain vigilant of the adverse health outcomes associated with these substances and their unpredictable effects, especially for men who are disproportionately affected, and particularly for people with underlying cardiovascular and respiratory conditions.”

‘Misleading and Sensational’ Study

Marijuana advocates say it was unfair of the researchers to include synthetic cannabis in their study, which was funded by the National Institutes on Drug Abuse and the American Association of Colleges of Nursing. 

“To lump in adverse effects from synthetically produced compounds in this analysis is misleading and sensational, as these products are not cannabis and their safety profile is not at all comparable to that of natural cannabis,” said Paul Armentano, Deputy Director of NORML.

“Cannabis is psychoactive and that is why advocacy groups opine in favor of its regulation, including the imposition of age controls and product testing for purity and potency. Adverse effects from cannabis, like dysphoria (anxiety), are possible but are best mitigated by regulation and education — not by criminal prohibition.”

Previous studies have looked at the relationship between cannabis and motor vehicle accidents, with mixed results. A survey of people in Michigan who used medical marijuana for chronic pain found that over half had driven while under the influence of cannabis, and one in five say they've driven while “very high.”

Other studies found a decrease in traffic fatalities in states that legalized medical marijuana. That may be because patients were substituting cannabis for alcohol and other drugs used to relieve their symptoms.

My Story: Make Your Doctors Accountable

By Crystal Moody, Guest Columnist

From a full-time medical education coordinator to full-time chronic pain patient, I am now trying to maneuver my way through the world from the other side of the operating table. And it is a completely different ballgame. Gaslighting, patient-blaming and condescension are daily players in this game.

I live with chronic back and neck problems, some caused by medical errors, and have undergone multiple spinal surgeries and procedures. I was legally labeled as “physically disabled” in 2018 by Social Security, but it took three years in California and I had to hire an attorney to make that happen. Every player in this game gets paid, except the patient.

It was the beginning of 2016 when I realized I was never going to be able to work in medicine in my former capacity again. However, even if my body was broken, my mind was not. I re-enrolled in college, wanting to keep my mind fresh in between surgeries.

In 2018, I completed my BA in Organizational Leadership at Azusa Pacific University (online and from bed). I then completed my Masters in Public Health from Los Angeles Pacific University in 2021. I am now pursuing a doctorate in Social Work.

I hope that my work and life experiences will allow me to help others, in the same ways that I have needed help. I want to help people with chronic, debilitating and life-threatening illnesses.

CRYSTAL MOODY

In the beginning of my illnesses, I did not understand why I could not just let things go. As time passed, I realized it was because I was witnessing doctors, specialists and clinicians who had no clue what they were doing. Even worse, I was beginning to realize that every doctor I consulted with seemed to count on the fact that I would not have any medical knowledge. They tried to placate or downplay my concerns, and send me on my way.

Initially, I thought it was because of my own ignorance as a patient. But in appointment after appointment, the truth became blatantly clear. If I had had no educational, personal, and/or professional experiences in medicine, they could have fooled me in every visit, every time.

My goal now is to train our doctors and specialists to be more patient, kind, empathic and ethical, by teaching patients how to be investigators of their own health information. Patients need to learn how to advocate for their own health during an era of “sloppy medicine.”

One such lesson is to teach patients where and how to hold their doctors and clinicians accountable. Never check hospital or medical practice reviews of your doctor. Those reviews are biased. As an ex-hospital employee, I can tell you who gets those reviews. Patients whose outcomes are successful and more likely to give positive reviews are noted by hospital employees. They send those patients the evaluation forms.

In the hospital where I worked, many evaluation forms were completed by other hospital employees. Some employees were even patients of the doctors they work with. How is that not a conflict of interest?

Always check for independent reviews through online sites such as HealthGrades. They are much better resources for patients with complex medical histories. You need to know who you are going to be working with, and it is immensely helpful to see other patients’ unbiased reviews of doctors. No one is a better professional in being and knowing you than YOU.

It should no longer be a one-way-street, with doctors doing all the talking during appointments. If patients know the right questions to ask, they will be better prepared to challenge the doctor for answers and direction. Patients deserve to get the most out of every visit. Additionally, I encourage you to observe if the doctor has a partner or assistant join them in your visits.

You should never go to an appointment alone, if you do not want to. If someone can’t physically be there, you can also make a FaceTime call to have a second set of “eyes and ears” at your appointments. The clinicians document your visits and sometimes bring reinforcements. You should, as well. Your input is valuable, and you should be documenting as much or more than your doctor.

The sad fact is that you are worth more to a doctor when you are sick than when you are well. They send you back and forth between their colleagues and specialists. It is time to cancel the hamster wheel of medicine and rebuild it through decency and transparency, with truly informed consent by both patients and doctors.

A poor doctor should not have the same status and pay as a good doctor, but they often are. What keeps a doctor honest if they earn the same despite their poor patient outcomes? Ultimately, for doctors to perform better, patients must be willing to hold them accountable when necessary.

Disabled patients should know there is no guilt or shame in disability, and that disability does not equal stupidity. There is opportunity for positivity in every negative situation.

Crystal Moody lives in California.

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

Send your stories to editor@painnewsnetwork.org.

Opioid Tapering Disrupts Healthcare and Worsens Doctor-Patient Relationships

By Pat Anson, PNN Editor

Tapering patients on long-term opioid therapy results in more emergency department visits and hospitalizations, according to a large new study that found reduced opioid use was particularly disruptive to the healthcare of pain patients with diabetes and high blood pressure.

The study by researchers at University of California Davis is the latest to document the “unintended negative consequences” of policies that limit opioid prescribing. A previous study by the same research team found that tapering raises the risk of an overdose and mental health crisis.

In their latest study, UC Davis researchers analyzed health data for over 113,000 patients who were on opioid therapy for at least 12 months, comparing those who were not tapered to those who had their dose reduced by 15% or more.

Their findings, published in JAMA Network Open, showed that tapering significantly increased hospitalizations and ED visits, while at the same time reducing the number of primary care (PC) visits. Researchers think the latter is at least partially due to “ruptures in relationships” with primary care providers (PCPs) due to patient dissatisfaction with tapering.

Opioid tapering was also associated with a significant reduction in patients taking medication for hypertension or diabetes – even though their blood pressure and blood sugar levels rose when their opioid doses were reduced.

“Tapering may be associated with reduced medication adherence due to an increased patient focus on managing pain and psychological distress due to the taper, disruption in PC due to more frequent ED visits and hospitalizations, or fracture of the PCP-patient relationship,” wrote lead author Elizabeth Magnan, MD, a family medicine physician at UC Davis Medical Center.

“Although cautious interpretation is warranted, these outcomes may represent unintended negative consequences of opioid tapering in patients who were prescribed previously stable doses.” 

Opioid prescribing has fallen dramatically in the U.S. over the past decade, particularly after the release of the CDC’s 2016 opioid guideline. Although millions of patients were affected by the guideline’s recommendations, few efforts were made at the federal level to see what happened to patients who had their opioid doses reduced or even stopped.

A recent study found the number of cancer patients seeking treatment for pain in emergency departments has doubled. Of the 35 million ED visits made by cancer patients, over half were deemed preventable – meaning the visits could have been avoided if the patient has received proper care earlier.