Youths with Chronic Pain More Likely to Have Anxiety and Depression

By Crystal Lindell

Young people with chronic pain are more likely to suffer from anxiety and depression, according to new research published in JAMA Pediatrics.

Researchers in the U.S. and Australia reviewed 79 previous studies involving over 12,600 youths with chronic pain. The average age was about 14. Many live with chronic illnesses such as juvenile idiopathic arthritis, fibromyalgia, Crohn’s disease and colitis. 

The research team found that 34.6% had an anxiety disorder and 12.2% had depression. Those rates are more than 3 times higher than what is normally seen in a community setting.

Researchers say mental health screening, prevention and treatment should be a priority for young people with chronic pain. 

“A simple way to put this into practice would be for pain practitioners to consider a short screening assessment for symptoms of anxiety and depression in young patients,” said lead author Joanne Dudeney, PhD, a clinical psychologist and research fellow at Macquarie University in Australia.

“This is a vulnerable population, and if we’re not considering the mental health component, it’s likely we’re also not going to achieve the clinical improvements we want to see.”

The findings are surprising to me because I would have expected the rates of anxiety and depression to be even higher. Chronic pain is depressing, and it’s also natural that dealing with it would cause anxiety. Plus, the teenage years are infamous for being a hotbed of intense emotions – even for those who aren’t dealing with physical ailments. 

So if you had asked me to guess how many teens with chronic pain had depression and/or anxiety, I would have said something closer to 95 percent. It’s a wonder how anyone with chronic pain is not depressed or anxious. 

Regardless, I’m always glad to see more data like this, validating the experiences of those of us with chronic pain – especially when it comes to younger patients. Anyone who is more likely to suffer from mental health problems should be screened for them so they can get treatment.

Many doctors try to blame pain symptoms on depression and anxiety, so I always worry that research like this will somehow be used against patients. I could easily see doctors focusing on the mental health issues associated with chronic pain more than the physical ones after reading this study. 

The more hopeful scenario though is that this type of research is instead used to save lives and to make being alive easier for young pain patients. If more mental health screenings are able to prevent and treat depression, anxiety, and coping behaviors like self-harm, drug use and even suicidal ideation, that would be incredible. 

If you’re young and dealing with chronic pain, depression and/or anxiety, I want you to know that I am out here rooting for you. Your life matters in ways you can’t even fully grasp yet, and we need you to keep going. The world is a better place with you in it.

Mental Health Needs of Chronic Pain Patients Often Go Untreated

By Pat Anson

People who live with chronic pain often experience anxiety and depression, but they are far less likely to have access to mental healthcare in the U.S. than those who do not have persistent pain, according to a new study.

Nearly 52 million American adults have chronic pain – about one in every five. Over 43% of them have a need for mental health treatment, compared to just 17.4% of adults who do not have chronic pain.

“People living with chronic pain may form a distinct population with special mental health care needs,” said lead author Jennifer De La Rosa, PhD, strategy director for the University of Arizona Health Sciences Comprehensive Center for Pain & Addiction. “Improving health care for people with chronic pain includes not only connecting people to care, but also addressing a disproportionate failure to achieve relief.”

De La Rosa and her colleagues reviewed findings from the 2019 National Health Interview Survey, which collected health information from a representative sample of nearly 32,000 U.S. adults. Their findings, recently published in the journal PAIN, show that just 44.4% of those with chronic pain, anxiety and depression had their mental health issues adequately treated, compared to 71.5% of those without pain.

“There are many possible reasons an individual with chronic pain might have suboptimal mental health experiences, including the accessibility of care and the feasibility of attending appointments,” De La Rosa said in a statement. “Additionally, few mental health providers are trained in chronic pain, so only a small percentage of people living with chronic pain are likely receiving mental health treatment that is designed to address their needs.”

It is not specifically addressed in the U of A study, but many patients on opioid pain medication no longer have access to benzodiazepines – a class of anti-anxiety medication that includes Xanax and Valium. Once commonly prescribed together, insurance companies and medical guidelines now strongly discourage that practice, due to fears that the two drugs raise the risk of an overdose.

In 2016, the CDC warned doctors to avoid co-prescribing opioids and benzodiazepines “whenever possible.” That same year, the FDA updated its warning labels to state that taking the drugs concurrently could result in “profound sedation, respiratory depression, coma and death.”

Even when mental health medications or therapy are offered, pain patients may be reluctant to accept them.

“Some patients may interpret mental health screening as potentially discrediting perhaps reflecting provider's doubts as to the legitimacy of self-reported pain,” the U of A researchers said. “Patients may also fear that acknowledging mental health comorbidity will reduce the likelihood of being prescribed opioids. The heightened mental health treatment stigma experienced by patients with chronic pain may lead many patients to resist the conceptualization of their chronic pain as having any emotional or mental components.”

A recent study by the same research team estimated that 12 million U.S. adults with chronic pain have  anxiety or depression so severe that it limits their ability to work, socialize and complete daily tasks. To improve patient outcomes, researchers say the routine evaluation of pain patients for anxiety and depression should become “a cornerstone of mental health policy.”

Premenstrual Disorder Causes Despair for Some Women

By Lauren Peace, KFF Health News

For the most part, Cori Lint was happy.

She worked days as a software engineer and nights as a part-time cellist, filling her free hours with inline skating and gardening and long talks with friends. But a few days a month, Lint’s mood would tank. Panic attacks came on suddenly. Suicidal thoughts did, too.

She had been diagnosed with anxiety and depression, but Lint, 34, who splits her time between St. Petersburg, Florida, and Tulsa, Oklahoma, struggled to understand her experience, a rift so extreme she felt like two different people.

“When I felt better, it was like I was looking back at the experience of someone else, and that was incredibly confusing,” Lint said.

Then, in 2022, clarity pierced through. Her symptoms, she realized, were cyclical. Lint recognized a pattern in something her doctors hadn’t considered: her period.

CORI LINT

For decades, a lack of investment in women’s health has created gaps in medicine. The problem is so prevalent that, this year, President Joe Biden signed an executive order to advance women’s health research and innovation.

Women are less likely than men to get early diagnoses for conditions from heart disease to cancer, studies have found, and they are more likely to have their medical concerns dismissed or misdiagnosed. Because disorders specifically affecting women have long been understudied, much remains unknown about causes and treatments.

That’s especially true when it comes to the effects of menstruation on mental health.

When Lint turned to the internet for answers, she learned about a debilitating condition at the intersection of mental and reproductive health.

Sounds like me, she thought.

What Is PMDD?

Premenstrual dysphoric disorder, or PMDD, is a negative reaction in the brain to natural hormonal changes in the week or two before a menstrual period. Symptoms are severe and can include irritability, anxiety, depression, and sudden mood swings. Others include fatigue, joint and muscle pain, and changes to appetite and sleep patterns, with symptoms improving once bleeding begins.

Unlike the mild discomfort of premenstrual syndrome, or PMS, the effects of premenstrual dysphoric disorder are life-altering. Those afflicted, according to one estimate, can endure almost four years of disability, cumulatively, over their lives.

Though researchers estimate that the dysphoric disorder affects around 5% of people who menstruate — about the same percentage of women with diabetes — the condition remains relatively unknown, even among health care providers.

In a 2022 survey of PMDD patients published in the Journal of Women’s Health, more than a third of participants said their family doctors had little knowledge of the premenstrual disorder or how to treat it. About 40% said the same was true of their mental health therapists.

Reproductive mental health has been sidelined as a specialty, said Jaclyn Ross, a clinical psychologist who researches premenstrual disorders as associate director of the CLEAR Lab at the University of Illinois-Chicago. Only some health care providers get training or even become aware of such disorders, Ross said.

“If you’re not considering the menstrual cycle, you’re at risk of misdiagnosing and missing what’s actually going on,” Ross said.

That was the case for Tampa, Florida, resident Jenna Tingum, 25, who had panic attacks and suicidal thoughts as a premed student at the University of Florida. It wasn’t until her college girlfriend read about PMDD online and noticed Tingum’s symptoms flared in the days leading up to her period that Tingum talked with her gynecologist.

“I don’t think I would have ever put the pieces together,” Tingum said.

Suicide Risk and Treatment

Because few researchers study the condition, the cause of PMDD is something of an enigma, and treatments remain limited.

It wasn’t until 2013 that the disorder was added to the Diagnostic and Statistical Manual, the handbook used by medical professionals in the U.S. to diagnose psychiatric conditions. PMDD was officially recognized by the World Health Organization in 2019, though references in medical literature date to the 1960s.

Defining the disorder as a medical condition faced early pushback from some feminist groups wary of giving credibility to stereotypes about PMS and periods. But Ross said patients must be taken seriously.

In one study, 72% of respondents with the disorder said they’d had suicidal thoughts in their lifetime. And 34% said they had attempted suicide, compared with 3% of the general population.

Marybeth Bohn lost her daughter, Christina Bohn, to suicide in 2021. It was only in the months before her death at age 33 that Christina connected her extreme distress to her cycle — no doctors had asked, Bohn said. Now Bohn, who lives in Columbia, Missouri, works with medical and nursing schools around the country to change curricula and encourage doctors to ask people in mental health emergencies about their premenstrual symptoms and cycles.

“We need more research to understand how and why these reactions to hormones occur,” Ross said. “There’s so much work to be done.”

While doctors haven’t settled on a universal approach to address the symptoms, three main treatments have emerged, said Rachel Carpenter, medical director of reproductive psychiatry at the University of Florida–Jacksonville College of Medicine.

Selective serotonin reuptake inhibitors, the most common form of antidepressants, are a first line of attack, Carpenter said. Some patients take the medication regularly; others in just the week or two that symptoms occur.

For some patients, hormonal birth control can alleviate symptoms by controlling or preventing the release of certain hormones.

Finally, talk therapy and cycle awareness can help patients build mental resilience for difficult weeks.

Sandi MacDonald, who co-founded the International Association for Premenstrual Disorders, a leading resource for patients and clinicians, said peer support is available through the nonprofit, but funding for research and education remains elusive.

She hopes the new White House initiative on advancing women’s health research will open doors.

‘I’m Not Crazy’

Both Lint and Tingum, who were diagnosed by medical professionals after learning about the disorder on their own, said a lack of conversation around periods contributed to their care being delayed.

Lint doesn’t remember talking much about periods in grade school; they were often the butt of a joke, used to dismiss women.

“For the longest time, I thought, ‘Well, this happens to everyone, right?’” Lint said of her symptoms. “Has a doctor ever asked me what my symptoms are like? No, absolutely not. But we’re talking about a quarter or more of my life.”

Brett Buchert, a former University of Florida athlete who took time away from campus because her symptoms were so severe, said that when doctors do ask questions, it can feel like boxes being checked: “The conversation ends there.”

Buchert, who graduated with a degree in psychology and now lives in Boulder, Colorado, said understanding what’s happening to her and being aware of her cycle has helped her manage her condition.

Lint and Tingum agreed.

Even as Lint struggles to find a medicine that brings relief, tracking her cycle has allowed her to plan around her symptoms, she said. She makes fewer commitments in the week before her period. She carves out more time for self-care.

She’s also found solace in reading stories of others living with the condition, she said.

“It’s helped me process the extremes,” Lint said. “There’s not something wrong with me as an individual. I’m not crazy; this is something that’s legitimately happening to me. It helps to know I’m not alone.”

This article was produced through a partnership between KFF Health News and the Tampa Bay Times. KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Ketamine Therapy a ‘Wild West’ for Patients

By Dawn Megli, KFF Health News

In late 2022, Sarah Gutilla’s treatment-resistant depression had grown so severe, she was actively contemplating suicide. Raised in foster care, the 34-year-old’s childhood was marked by physical violence, sexual abuse, and drug use, leaving her with life-threatening mental scars.

Out of desperation, her husband scraped together $600 for the first of six rounds of intravenous ketamine therapy at Ketamine Clinics Los Angeles, which administers the generic anesthetic for off-label uses such as treating depression or chronic pain. When Gutilla got into an Uber for the 75-mile drive to Los Angeles, it was the first time she had left her home in Llano, California, in two years. The results, she said, were instant.

“The amount of relief I felt after the first treatment was what I think ‘normal’ is supposed to feel like,” she said. “I’ve never felt so OK, and so at peace.”

For-profit ketamine clinics have proliferated over the past few years, offering infusions for a wide array of mental health issues, including obsessive-compulsive disorder, depression, and anxiety. Although the off-label use of ketamine hydrochloride, a Schedule III drug approved by the FDA as an anesthetic in 1970, was considered radical just a decade ago, now between 500 and 750 ketamine clinics have cropped up across the nation.

Market researcher Grand View Research pegged industry revenues at $3.1 billion in 2022, and projects them to more than double to $6.9 billion by 2030. Most insurance doesn’t cover ketamine for mental health, so patients must pay out-of-pocket.

While it’s legal for doctors to prescribe ketamine, the FDA hasn’t approved it for pain or mental health treatment, which means that individual practitioners must develop their own treatment protocols. The result is wide variability among providers, with some favoring gradual, low-dosage treatments while others advocate larger amounts that can induce hallucinations, as the drug is psychedelic at the right doses.

“Ketamine is the wild West,” said Dustin Robinson, the managing principal of Iter Investments, a venture capital firm specializing in hallucinogenic drug treatments.

Ketamine practitioners stress that the drug’s emergence as a mental health treatment is driven by a desperate need. Depression is the leading cause of disability in the United States for individuals ages 15-44, according to the National Institute of Mental Health, and around 25% of adults experience a diagnosable mental disorder in any given year.

Meanwhile, many insurance plans cover mental health services at lower rates than physical health care, despite laws requiring parity. Thus many patients with disorders receive little or no care early on and are desperate by the time they visit a ketamine clinic, said Steven Siegel, chair of psychiatry and the behavioral sciences at the University of Southern California’s Keck School of Medicine.

But the revelation that “Friends” star Matthew Perry died in part from a large dose of ketamine, along with billionaire Elon Musk’s open use of the drug, has piqued fresh scrutiny of ketamine and its regulatory environment, or lack thereof.

Commercial ketamine clinics often offer same-day appointments, in which patients can pay out-of-pocket for a drug that renders immediate results. The ketamine is administered intravenously, and patients are often given blankets, headphones, and an eye mask to heighten the dissociative feeling of not being in one’s body. A typical dose of ketamine to treat depression, which is 10 times lower than the dosage used in anesthesia, costs clinics about $1, but clinics charge $600-$1,000 per treatment.

Ketamine is still shadowed by its reputation as the party drug known as “Special K”; Siegel’s first grant from the National Institutes of Health was to study ketamine as a drug of abuse. It has the potential to send users down a “K hole,” otherwise known as a bad trip, and can induce psychosis. Research in animals and recreational users has shown chronic use of the drug impairs both short- and long-term cognition.

Perry’s death in October raised alarms when the initial toxicology screening attributed his death to the acute effects of ketamine. A December report revealed Perry received infusion therapy a week before his death but that the fatal blow was a high dose of the substance taken with an opioid and a sedative on the day of his death — indicating that medical ketamine was not to blame.

A Variety of Protocols

Sam Mandel co-founded Ketamine Clinics Los Angeles in 2014 with his father, Steven Mandel, an anesthesiologist with a background in clinical psychology, and Sam said the clinic has established its own protocol. That includes monitoring a patient’s vital signs during treatment and keeping psychiatrists and other mental health practitioners on standby to ensure safety. Initial treatment starts with a low dose and increases as needed.

While many clinics follow the Mandels’ graduated approach, the dosing protocol at MY Self Wellness, a ketamine clinic in Bonita Springs, Florida, is geared toward triggering a psychedelic episode.

Christina Thomas, president of MY Self Wellness, said she developed her clinic’s procedures against a list of “what not to do” based on the bad experiences people have reported at other clinics.

The field isn’t entirely unregulated: State medical and nursing boards oversee physicians and nurses, while the FDA and Drug Enforcement Administration regulate ketamine. But most anesthesiologists don’t have a background in mental health, while psychiatrists don’t know much about anesthesia, Sam Mandel noted. He said a collaborative, multidisciplinary approach is needed to develop standards across the field, particularly because ketamine can affect vital signs such as blood pressure and respiration.

The protocols governing Spravato, an FDA-approved medication based on a close chemical cousin of ketamine called esketamine, are illustrative. Because it has the potential for serious side effects, it falls under the FDA’s Risk Evaluation and Mitigation Strategies program, which puts extra requirements in place, said Robinson. Spravato’s REMS requires two hours of monitoring after each dose and prohibits patients from driving on treatment days.

Generic ketamine, by contrast, has no REMS requirements. And because it is generic and cheap, drugmakers have little financial incentive to undertake the costly clinical trials that would be required for FDA approval.

That leaves it to the patient to assess ketamine providers. Clinics dedicated to intravenous infusions, rather than offering the treatment as an add-on, may be more familiar with the nuances of administering the drug. Ideally, practitioners should have mental health and anesthesia expertise, or have multiple specialties under one roof, and clinics should be equipped with hospital-grade monitoring equipment, Mandel said.

Siegel, who has researched ketamine since 2003, said the drug is especially useful as an emergency intervention, abating suicidal thoughts for long enough to give traditional treatments, like talk therapy and SSRI antidepressants, time to take effect. “The solutions that we have and have had up until now have failed us,” Mandel said.

The drug is now popular enough as a mental health treatment that the name of Mandel’s clinic is a daily sight for thousands of Angelenos as it appears on 26 Adopt-A-Highway signs along the 405 and 10 freeways.

And the psychedelic renaissance in mental health is accelerating. A drug containing MDMA, known as ecstasy or molly, is expected to receive FDA approval in 2024. A drug with psilocybin, the active ingredient in “magic mushrooms,” could launch as early as 2027, the same year a stroke medicine with the active ingredient of DMT, a hallucinogen, is expected to debut.

Robinson said many ketamine clinics have opened in anticipation of the expanded psychedelic market. Since these new drugs will likely be covered by insurance, Robinson advises clinics to offer FDA-approved treatments such as Spravato so they’ll have the proper insurance infrastructure and staff in place.

For now, Sarah Gutilla will pay out-of-pocket for ketamine treatments. One year after her first round of infusions, she and her husband are saving for her second. In the meantime, she spends her days on her ranch in Llano where she rescues dogs and horses, and relies on telehealth therapy and psychiatric medications.

While the infusions aren’t “a magic fix,” they are a tool to help her move in the right direction.

“There used to be no light at the end of the tunnel,” she said. “Ketamine literally saved my life.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Patients Should Know the Health Benefits of Ketamine, Not Just the Risks

By Drs. Amber Borucki and Rakhi Dayal 

Recent headlines about the death of “Friends” actor Matthew Perry have pointed to ketamine as a contributing cause. Perry drowned in his hot tub last October, which the medical examiner’s office attributed to the “acute effects of ketamine,” as well as coronary artery disease and the opioid buprenorphine.

With this news, the public became more familiar with a medication they may never have heard of previously.  Ketamine is a classified by the Drug Enforcement Administration (DEA) as a “dissociative anesthetic,” meaning that it can cause the user to feel disconnected and alter their perceptions of sight or sound. 

Ketamine is used in hospital or surgical settings for anesthesia purposes, for acute pain management, in the emergency room or intensive care, and in some cases for chronic pain management. A form of ketamine (esketamine) is also used to treat mental health conditions. 

Appropriate monitoring and medical supervision are necessary for safe ketamine use. While it is important to recognize the risks of this medication when used improperly, it is also important to make sure that people don’t become overly fearful of a drug that serves an important role in patient care when delivered properly by trained healthcare providers. 

When the news broke that Michael Jackson’s death was attributed to propofol, patients were suddenly concerned about the use of this drug in their anesthesia treatment. As physicians, it is our responsibility to make sure patients understand the proper and improper uses of medications, and that we help alleviate concerns through education. As with any treatment, we need to strike the right balance between providing information on the risks, while also communicating the benefits. 

While ketamine is in the spotlight and more stories are published about its use, it is important that we take a moment to provide greater clarity about this medication.  

What Is Ketamine?  

Ketamine is an anesthetic agent that was originally developed in 1963 and gained approval from the Food and Drug Administration (FDA) as a general anesthetic in 1970. It is well established that ketamine has tremendous clinical value in providing sedation and pain relief when patients undergo anesthesia, and can also be beneficial as part of a comprehensive pain management plan. More recently, the FDA approved a form of ketamine in a nasal spray for treatment-resistant depression.   

Ketamine is used for a variety of indications, with some being FDA-approved and some being considered "off-label" uses.  

  • General anesthesia (FDA-approved): Ketamine can be used as part of a general anesthetic given for surgery, and in certain clinical situations is one of the preferred medications.  When ketamine is given by a trained anesthesia provider, it is a safe and effective part of the anesthesia regimen.     

  • Acute pain (off-label): Ketamine can be given to treat pain after surgery or for other significant acute pain conditions. This is commonly done by providing a low-dose infusion of ketamine through an IV while a patient recovers in the hospital. Although this is considered "off-label” use, there are joint guidelines issued in 2018 by the American Society of Regional Anesthesia and Pain Medicine (ASRA), the American Society of Anesthesiologists (ASA), and the American Academy of Pain Medicine (AAPM) to guide safe use for acute pain.

  • Chronic pain management (off-label): Ketamine for chronic pain is also considered "off-label" use, but there are also consensus guidelines by the ASRA, ASA and AAPM that discuss chronic pain clinical scenarios where research found ketamine to be beneficial. 

If a patient is considering the use of ketamine for chronic pain, it is important to understand what type of medical supervision is provided and by whom. Patients should consider seeking treatment from a physician who is board certified in pain medicine, as they have extra training in pain management. The use of ketamine for chronic pain should be part of a larger umbrella of comprehensive pain treatment strategies provided in a multidisciplinary care team model.

What Are the Risks of Ketamine?

Ketamine is classified a schedule III controlled substance by the DEA, and therefore has some addictive potential. Side effects include increased heart rate, high blood pressure, increased saliva production, blurry vision, dizziness, sedation, nausea, urinary symptoms, dissociation (out of body sensation) and respiratory depression. It can even cause hallucination at certain doses. 

Caution is advised when ketamine is used with other medications that have similar adverse effects, such as sedation, respiratory depression, confusion, and delirium. Medication interactions and overdose with ketamine can lead to unconsciousness, slowed breathing, and rare severe consequences such as death. 

The medical use of ketamine in general anesthesia under the medical supervision of a trained provider is generally considered safe. Off-label use of ketamine for acute and chronic pain also has established national guidelines for medical practitioners to follow. This treatment can provide pain relief to patients safely, when provided by a board-certified anesthesiologist or pain physician using proper monitoring and safety guidelines.

Unsupervised and non-medical use of ketamine, particularly when taken in combination with other sedating medications, can lead to adverse outcomes and even death, as we saw with Matthew Perry. We encourage patients to have conversations with providers about their treatment plan and to discuss any concerns they have about the medications they are prescribed.

Amber Borucki, MD, is an Associate Professor of Anesthesiology, Perioperative and Pain Medicine at Stanford University.

Rakhi Dayal, MD is Chair of the Pain Committee for the California Society of Anesthesiologists, and Program Director of Pain Medicine and Professor of Anesthesiology & Perioperative Care at University of California, Irvine.

Millions Disabled by Chronic Pain, Anxiety and Depression

By Pat Anson, PNN Editor

About 12 million people in the United States – nearly 5% of the adult population – have chronic pain that is accompanied by anxiety or depression so severe that it limits their ability to work, socialize and complete daily tasks, according to a new study.

The co-occurrence of chronic pain with anxiety and/or depression (A/D) is well known, but little research has been conducted on its prevalence or impact. To see how often the symptoms occur, researchers at the University of Arizona Health Sciences analyzed responses from nearly 32,000 people who participated in the 2019 National Health Interview Survey.

Their findings, published in in the journal PAIN, show that adults with chronic pain are about five times more likely to report anxiety or depression than those without chronic pain. The risk is even higher in adults with “high impact pain” – pain severe enough to limit daily life and work activities -- who are eight times more likely to have A/D.

"The study's findings highlight an underappreciated population and health care need -- the interdependency between mental health and chronic pain," said lead author Jennifer De La Rosa, PhD, director of strategy for the UArizona Health Sciences Comprehensive Pain and Addiction Center.

De La Rosa and her colleagues found that adults with co-occurring symptoms of pain, anxiety and depression had a significantly more disability compared to those with either chronic pain alone or A/D symptoms alone. Nearly 70% reported that their work was limited, about 44% had difficulty doing errands alone, and over half (56%) had problems participating in social activities.

"I was surprised by the magnitude of the effect with functional limitations," said De La Rosa. "Across all domains of functional activity in life, we saw an enormous jump among people who are living with both conditions. These are people who are at a high risk for functional limitation, which will disturb their quality of life."

Like pain, anxiety and depression are difficult to measure and clinicians have to rely on patients self-reporting their symptoms. Making a diagnosis is also difficult because chronic pain and A/D are interconnected neurologically, affecting the same parts of the brain that control cognition and emotional function. Anxiety and depression can heighten the perception of pain and may increase the likelihood of acute, short-term pain becoming chronic.

"When someone is experiencing both chronic pain and anxiety or depression symptoms, achieving positive health outcomes can become more challenging," said senior author Todd Vanderah, PhD, director of the Comprehensive Pain and Addiction Center. "This study gives us another avenue to explore in our continuing effort to find new ways to treat chronic pain."

Researchers say further studies are needed to see if people receiving pain treatment are also getting mental health care, and whether that care is helping with their symptoms.

A recent study found that anxiety, depression and other mood disorders often precede the development of fibromyalgia, irritable bowel syndrome (IBS), and chronic fatigue syndrome (CFS).

Chronic Pain Patients Report Improvement from Cannabis Oil

By Pat Anson, PNN Editor

Patients with chronic pain and other illnesses who did not respond to conventional treatment reported improvements in pain, anxiety, depression, fatigue and quality of life after being prescribed cannabis oil for three months, according to a large new Australian study. There were no improvements in patients with insomnia.

Researchers at the University of Sydney surveyed 2,327 patients with chronic health issues who were prescribed cannabis oil products containing cannabinoids, delta-9-tetrahydrocannabinol (THC) and cannabidiol (CBD). The oils are made by Little Green Pharma , a company that specializes in cannabis-based medicine and provided funding for the Quality of Life Evaluation Study (QUEST Initiative).

Over two-thirds of the participants (69%) suffered from chronic pain. Half were being treated for more than one health condition; and one in four were unemployed, on leave, or had limited work duties due to illness.   

Medical cannabis was legalized in Australia in 2016. Cannabis is only available by prescription in Australia to patients with health conditions that are unresponsive to conventional treatment.

“Short-term findings over 3-months indicate that patients prescribed MC (medical cannabis) in practice have improved HRQL (health-related quality of life) and reduced fatigue. Patients experiencing anxiety, depression, or chronic pain also improved in those outcomes over 3-months, but no changes in sleep disturbance were observed in patients with sleep disorders,” researchers reported in PLOS ONE.  

“The study continues to follow patients over 12-months to determine whether improvements in PROs (patient reported outcomes) are maintained long-term. In addition, further subgroup analyses will be undertaken to determine whether patients with specific health conditions have better outcomes compared with others when using validated condition-specific questionnaires.”

The researchers did not measure adverse effects in the QUEST Initiative, but 30 participants withdrew from the study due to “unwanted side effects.” The authors noted that more research on cannabis oil products used in the study is needed in order to successfully treat patients with insomnia and sleep disorders.

Another recent survey in Australia of patients with chronic illness found significant improvements in their physical and mental health after they started using medical cannabis. Most of the cannabis products in that study were oils containing CBD and/or THC.   

Mood Disorders May Be Early Sign of Chronic Fatigue

By Pat Anson, PNN Editor

Anxiety, depression and other mood disorders have long been associated with fibromyalgia, irritable bowel syndrome (IBS), and chronic fatigue syndrome (CFS). That’s not altogether surprising, since the three chronic illnesses cause body pain, insomnia, fatigue, and other stressful symptoms that can trigger a psychological reaction. No one likes being sick, after all.  

But a large new study found that psychiatric disorders preceded the development of fibromyalgia, IBS and CFS in about a quarter of the people who have the conditions – more than those who suffer from similar chronic illnesses. Anxiety and depression were significantly more common in people who were later diagnosed with chronic fatigue.

"This work provides evidence that for many people, a wide variety of physical and psychological factors are associated with these debilitating conditions," says Francis Creed, a professor emeritus of psychiatry at The University of Manchester.

Creed analyzed over two years of health data from over 120,000 people who participated in the Dutch Lifelines cohort study; comparing the data of people with fibromyalgia, IBS and CFS to those with diabetes, inflammatory bowel disease (IBD) and rheumatoid arthritis. The latter group had similar symptoms and served as a control.

Creed’s findings, recently published in the journals PLOS ONE and Frontiers in Psychiatry, showed that psychiatric disorders were more common (17–27%) in the first group than in the control group (10.4–11.7%).

General anxiety disorder (GAD), panic disorder, dysthymia, major depressive disorder (MDD) and agoraphobia were particularly more common in people who were later diagnosed with CFS.  

PLOS ONE

Creed says a number of physical and mental health issues may be at work in the development of fibromyalgia, IBS and CFS. He favors a holistic approach to treating them, including a mental health evaluation.   

"When people suffering from CFS/ME, IBS and fibromyalgia come into contact with health professionals, negative attitudes can sometimes get in the way of treatment. but by understanding these complex conditions better, the stigma and mystery around them can be eased," he said.

"Although there are symptomatic treatments which may help these unexplained disorders, we should aim to understand fully their underlying causes. There are probably several different ways they may develop; a whole range of physical and mental factors are probably involved. Treatment approaches will become more effective as our understanding of the causes improves."

Association is not causation, and it’s important to note that about three-quarters of the people who developed fibromyalgia, IBS and CFS did not have any mood disorders prior to the onset of their illnesses.   

Creed says future research and clinical work should focus on possible interactions between psychiatric disorders and other behavioral variables to identify the true role of anxiety and depression in chronic illness.

How TMS Helped Me Feel Better Physically and Mentally

By Madora Pennington, PNN Columnist

Chronic pain is often accompanied by depression. Many clinicians used to think that pain was caused by psychological distress, so they offered patients antidepressants with the attitude that their suffering was “all in their head.”

But now it is better understood that chronic pain can cause depression. Both conditions have a similar pathology and change the brain in similar ways. That is why treatments that work on depression (like antidepressants) may reduce the brain’s sensitivity to pain.

“Regardless of the cause of the pain, anxiety and depression increase the sensation of pain. Pain increases depression and anxiety, creating a vicious cycle. Breaking that cycle can help decrease pain,” says integrative physician and pain doctor Dr. Linda Bluestein.

I have Ehlers-Danlos Syndrome (EDS). Debilitating pain has been my companion since I was 14 years old. My body makes collagen that is not structurally sound. Because I am “loosely glued together,” I get injured easily because my joints are unstable and my body has a poor sense of where it actually is in relation to itself and the outside world. My thin and stretchy connective tissue sends pain signals to my brain, even when I am not injured.

It is probably not realistic for someone with Ehlers-Danlos to expect to have a life without pain, so I welcome medical treatments that might lessen my pain, even if they don’t eliminate it. My goal is to have pain that does not incapacitate me or ruin my life by taking all my attention. Thankfully, there are modalities that do this.

MADORA GETTING TREATMENT AT UCLA’S tms CLINIC

The last one I tried was transcranial magnetic stimulation (TMS), which stimulates the brain through a magnetic pulse which activates nerve cells and brain regions to improve mood.

TMS treatments are painless and entirely passive. The patient just sits there and lets the machine do the work. A magnetic stimulator rests against the head and pulses, which feels like tapping or gentle scratching.

TMS has been around for almost 40 years. The first TMS device was created in 1985 and the FDA approved it for major depression in 2008. Since then, its use has been expanded to include migraine, obsessive compulsive disorder, and smoking cessation.

While other medical procedures work on an injured body part, TMS targets the brain, where pain is processed. This helps the brain shift away from perceiving pain signals that are excessive and have become chronic.

“Many people are surprised to learn that stimulating the brain can help alleviate pain that is felt in an arm, leg or some other part of the body. We explain to patients that because pain is perceived in the brain, it is possible to reduce or sometimes even eliminate it by stimulating specific brain regions,” says Andrew Leucther, MD, a psychiatrist who heads UCLA’s TMS clinic, where I was treated. In addition to depression, the clinic also treats fibromyalgia, neuropathy, nerve injury, and many other causes of pain.

“Most patients are much less bothered by pain after treatment and report that they are functioning better in their work and personal lives,” Leucther told me.

Many insurers cover TMS for depression, but it is not generally covered for pain alone — although many doctors will add protocols for pain when treating depression. This is how I got my 36 sessions of TMS treatment, the usual number that insurance will cover and is thought to be effective.

Repetitive TMS stimulation to the primary motor cortex of the brain has robust support in published studies for the treatment of pain. It seems to work particularly well for migraines, peripheral neuropathic pain and fibromyalgia. Like all treatments, it may not work for everyone.

TMS practitioners recommend four or five sessions per week, gradually tapering off toward the end. My body is so sensitive, about three per week was all I could tolerate comfortably. The appointments lasted a brief 10 -15 minutes. A downside of the TMS machine is that it puts pressure against the head, which could be too much for Ehlers-Danlos patients who have uncontrolled head and neck instability.

TMS gave me relief in different ways than other methods have.  One of the first things I noticed was less negativity and rumination. It was like getting a nagging, negative person out of the room -- or rather, my head. I felt less heartbroken over the major losses of my life, such as having spent so much of it totally disabled.

I also noticed a big difference in my PTSD triggers. I found myself shrugging off situations that normally would put me in a very uncomfortable, perturbed state. Keep in mind, I was getting TMS applied to various points on my scalp for pain, depression and anxiety.

Since having TMS, I notice that my body is less sensitive to touch. From spa treatments to medical procedures, it does not hurt as much to be poked at or pressed on. The extra comfort TMS had given me, both mentally and physically, is a lot for someone with medical problems like mine that are so difficult to treat.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

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. 

Persistent Pain Worsens Physical Function and Mental Health in Seniors

By Pat Anson, PNN Editor

Having persistent pain in your senior years is very common and contributes to declines in physical function and mental health, according to large new study that calls for more proactive treatment of pain in older adults.

“The findings from this study point to the importance of access to effective treatment for persistent pain in older adults and the need for additional research in chronic pain to optimize quality of life,” said lead author Christine Ritchie, MD, Director of the Mongan Institute Center for Aging and Serious Illness at Massachusetts General Hospital.

Ritchie and her colleagues analyzed health data for nearly 5,600 Medicare beneficiaries aged 65 and older who participated in the National Health Aging Trends Study from 2011 to 2019. Nearly 39% of participants reported having “persistent pain” and almost 28% had “intermittent pain.”  Only about a third of older adults (33.5%) reported having no “bothersome pain.”

Researchers found that seniors with persistent pain were more likely to report depression and anxiety, and to have three or more comorbid conditions such as a heart attack, stroke or cancer than those with intermittent or no pain. They were also more likely to have lower scores for mood and self-care activities such as eating, hygiene and dressing.

Perhaps the only good news is that differences were not found in cognitive impairment or dementia between those with and without persistent pain.

“This study is the first to include a representative sample of older Americans that demonstrates meaningful declines in physical function and well-being among those with persistent pain,” researchers reported in the Journal of the American Geriatrics Society.

“Given the high prevalence of persistent pain and its negative effects on both function and well-being, domains of the lived experience highly valued by older adults, it is incumbent on clinicians to prioritize strategies to effectively address their persistent pain.”

The researchers said many older adults lack access to effective nonpharmacological therapies and receive little guidance from primary care physicians about pain treatments.

Participants with persistent pain were more likely to be female, low-income, have limited education, and to be living alone – findings that mirror those of a 2020 study that found less-educated, working class Americans had higher rates of pain, social isolation, drug abuse, disability and suicide.  

A recent study in the UK found that having chronic pain in middle age significantly raises the chances of having pain and poor overall health in your senior years.

Treating Long Covid Still a Mystery

By Blake Farmer, Kaiser Health News

Medical equipment is still strewn around the house of Rick Lucas, 62, nearly two years after he came home from the hospital. He picks up a spirometer, a device that measures lung capacity, and takes a deep breath — though not as deep as he’d like.

Still, Lucas has come a long way for someone who spent more than three months on a ventilator because of covid-19.

“I’m almost normal now,” he said. “I was thrilled when I could walk to the mailbox. Now we’re walking all over town.”

Dozens of major medical centers have established specialized covid clinics around the country. A crowdsourced project counted more than 400. But there’s no standard protocol for treating long covid. And experts are casting a wide net for treatments, with few ready for formal clinical trials.

It’s not clear just how many people have suffered from symptoms of long covid. Estimates vary widely from study to study — often because the definition of long covid itself varies. But the more conservative estimates still count millions of people with this condition.

For some, the lingering symptoms are worse than the initial bout of covid. Others, like Lucas, were on death’s door and experienced a roller-coaster recovery, much worse than expected, even after a long hospitalization.

RICK LUCAS

Symptoms vary widely. Lucas had brain fog, fatigue, and depression. He’d start getting his energy back, then go try light yardwork and end up in the hospital with pneumonia. It wasn’t clear which ailments stemmed from being on a ventilator so long and which signaled the mysterious condition called long covid.

“I was wanting to go to work four months after I got home,” Rick said over the laughter of his wife and primary caregiver, Cinde.

“I said, ‘You know what, just get up and go. You can’t drive. You can’t walk. But go in for an interview. Let’s see how that works,’” Cinde recalled.

Rick did start working earlier this year, taking short-term assignments in his old field as a nursing home administrator. But he’s still on partial disability.

Why has Rick mostly recovered while so many haven’t shaken the symptoms, even years later?

“There is absolutely nothing anywhere that’s clear about long covid,” said Dr. Steven Deeks, an infectious disease specialist at the University of California-San Francisco. “We have a guess at how frequently it happens. But right now, everyone’s in a data-free zone.”

Researchers like Deeks are trying to establish the condition’s underlying causes. Some of the theories include inflammation, autoimmunity, so-called microclots, and bits of the virus left in the body. Deeks said institutions need more money to create regional centers of excellence to bring together physicians from various specialties to treat patients and research therapies.

No Cure or Treatment

Patients say they are desperate and willing to try anything to feel normal again. And often they post personal anecdotes online.

“I’m following this stuff on social media, looking for a home run,” Deeks said.

The National Institutes of Health promises big advances soon through the RECOVER Initiative, involving thousands of patients and hundreds of researchers.

“Given the widespread and diverse impact the virus has on the human body, it is unlikely that there will be one cure, one treatment,” Dr. Gary Gibbons, director of the National Heart, Lung, and Blood Institute, told NPR. “It is important that we help find solutions for everyone. This is why there will be multiple clinical trials over the coming months.”

Meanwhile, tension is building in the medical community over what appears to be a grab-bag approach in treating long covid ahead of big clinical trials. Some clinicians hesitate to try therapies before they’re supported by research.

Dr. Kristin Englund, who oversees more than 2,000 long covid patients at the Cleveland Clinic, said a bunch of one-patient experiments could muddy the waters for research. She said she encouraged her team to stick with “evidence-based medicine.”

“I’d rather not be just kind of one-off trying things with people, because we really do need to get more data and evidence-based data,” she said. “We need to try to put things in some sort of a protocol moving forward.”

It’s not that she lacks urgency. Englund experienced her own long covid symptoms. She felt terrible for months after getting sick in 2020, “literally taking naps on the floor of my office in the afternoon,” she said.

More than anything, she said, these long covid clinics need to validate patients’ experiences with their illness and give them hope. She tries to stick with proven therapies.

For example, some patients with long covid develop POTS — a syndrome that causes them to get dizzy and their heart to race when they stand up. Englund knows how to treat those symptoms. With other patients, it’s not as straightforward. Her long covid clinic focuses on diet, sleep, meditation, and slowly increasing activity.

But other doctors are willing to throw all sorts of treatments at the wall to see what might stick.

At the Lucas house in Tennessee, the kitchen counter can barely contain the pill bottles of supplements and prescriptions. One is a drug for memory. “We discovered his memory was worse [after taking it],” Cinde said.

Other treatments, however, seemed to have helped. Cinde asked their doctor about her husband possibly taking testosterone to boost his energy, and, after doing research, the doctor agreed to give it a shot.

“People like myself are getting a little bit out over my skis, looking for things that I can try,” said Dr. Stephen Heyman, a pulmonologist who treats Rick Lucas at the long covid clinic at Ascension Saint Thomas in Nashville.

He’s trying medications seen as promising in treating addiction and combinations of drugs used for cholesterol and blood clots. And he has considered becoming a bit of a guinea pig himself.

Heyman has been up and down with his own long covid. At one point, he thought he was past the memory lapses and breathing trouble, then he caught the virus a second time and feels more fatigued than ever.

“I don’t think I can wait for somebody to tell me what I need to do,” he said. “I’m going to have to use my expertise to try and find out why I don’t feel well.”

DR. STEPHEN HEYMAN

This story is from a reporting partnership that includes WPLN, NPR, and Kaiser Health News, a national newsroom that produces in-depth journalism about health issues.

Study Finds Harmful Effects of Chronic Pain Persist Throughout Life

By Pat Anson, PNN Editor

If you have chronic pain in middle age, chances are you will continue to have pain and poor overall health as you enter your senior years, according to a large new study in the UK that found pain has wide-ranging effects throughout life. Pain sufferers are significantly more likely to be unhappy, depressed and unemployed as they grow older.  

Researchers followed the health data and survey responses of over 12,000 people who were born in England, Scotland and Wales in March 1958. The study began in 2003, when most of the respondents were age 44, and continued until they turned 62 in 2021

The research findings, published in PLOS ONE, show that pain can persist for decades and may even be passed from one generation to the next.

“Tracking a birth cohort across their life-course we find chronic pain is highly persistent. It is associated with poor mental health outcomes later in life including depression, as well as leading to poorer general health and joblessness. We hope the study highlights the need for academics and policy makers to focus more attention on the problems of chronic pain,” wrote lead author Alex Bryson, PhD, a Research Fellow at University College London.

Bryson and his colleagues found that two-fifths of respondents reported suffering from chronic pain in their 40’s. Of those, 84% still reported “very severe” pain at age 50. Having chronic pain at 44 was also associated with poor mental health, lower life satisfaction, pessimism about the future, poor sleep and joblessness at age 55.

In the last year of their study, researchers found that having pain at midlife also raises the risk of a covid infection at age 62, a finding that supports previous studies showing that people in poor health are more susceptible to Covid-19.

The study pinpointed several factors that predict pain at a later age, including a father’s social and economic status. Respondents whose fathers were professionals, managers or administrators when they were born were significantly less likely to report chronic pain 44 years later.

The UK study reached many of the same conclusions as U.S. researchers, who have found that less-educated, working class Americans have higher rates of pain, social isolation, drug abuse, disability and suicide than those with college degrees. Efforts at treating physical pain, either with opioids or non-opioid therapies, have failed to turn the tide.  

“Our evidence on the persistence of pain across the life-course suggests efforts to counter it have not been wholly successful,” said Bryson. “We have shown that it is, in part, passed from one generation to the next, with those from lower social classes suffering most. Pain appears to be another source of inter-generational disadvantage, and one that is potentially as problematic as other aspects of social deprivation.”

Medical Cannabis Helps Pain Patients Stop or Reduce Use of Opioids

By Pat Anson, PNN Editor

A large new survey of medical marijuana users found that many who have chronic pain were able to reduce or even stop their use of opioid pain medication. The survey also found that pain patients reported less pain and better physical and social functioning once they started using medical cannabis.

Researchers at Emerald Coast Research and Florida State University College of Medicine surveyed 2,183 people recruited from marijuana dispensaries in Florida. Participants had a range of health problems, including chronic pain, anxiety, depression, insomnia and post-traumatic stress disorder (PTSD).  Most were using medical cannabis daily.

Answers to the 66-question online survey revealed that nine out of ten participants found medical cannabis to be very or extremely helpful in treating their medical conditions.

Most (61%) reported using opioid pain medication prior to medical cannabis. Of those, 79 percent reported either stopping (42%) or reducing (37%) their use of prescription opioids. A small number were also able to stop using psychiatric medications for anxiety, depression and PTSD.

“The majority of Florida medical cannabis users surveyed described medical cannabis as helpful and important to their overall quality of life. Notably, a large percentage of patients reported improvements in the areas of physical functioning, social functioning, and bodily pain after beginning medical cannabis,” wrote lead author Carolyn Pritchett, PhD, founder of Emerald Coast Research.

“We also found a substantial number of patients reduced the amount of OBPM (opioid-based pain medications) used after gaining access to legalized medical cannabis, with some patients specifically describing improved functioning in daily life as a result.”

The survey findings, published in the journal Substance Use and Misuse, lend credence to previous studies suggesting that legalization of cannabis leads to fewer prescriptions for opioids and other medications.

A recent study by researchers at Cornell University found that legalization of recreational marijuana in 11 states significantly reduced prescribing for Medicaid patients for a broad range of medications used to treat pain depression, anxiety, seizures and other health conditions.

A 2021 study of chronic pain patients being treated at medical cannabis clinics also found that most were able to stop or reduce their use of opioids. Almost half (48%) reported a significant decrease in pain, and most said they had better quality of life (87%) and better physical function (80%) while using medical cannabis.

A 2021 Harris Poll found that twice as many Americans are using cannabis or CBD to manage their pain than opioid medication.

A Pained Life: We’re Not ‘Normal’ So Don't Expect Us To Be

By Carol Levy, PNN Columnist

I recently contacted a local social service agency for help. They sent a social worker and wonderful lady, Margaret, to come to my home.

The first thing she did was a “depression inventory,” a questionnaire required by the service. The questions were pro forma, and if I was a “normal person” were probably an appropriate way to see if I was suffering from depression. For someone in chronic pain, not so much.

Margaret asked me, “Are you basically satisfied with your life?”

The choices were “Yes” or “No.” The questionnaire allowed for no other answer.

No, I am not satisfied with my life. I am mostly housebound, due to trigeminal neuralgia pain and the fear of triggering more pain if I go out. My reasons for being dissatisfied with my life are legitimate. It is not a sign of depression, but of my reality.

“Have you dropped many of your activities and interests?” Margaret asked. Yes, if you mean since the pain started 40 years ago. If you mean more recently, then the answer is no.

“Do you often get bored?” Of course, I do. I am home most of the time. My eye pain interferes with reading, writing or even watching a movie if there is a lot of movement on the screen. I spend a lot of time with the TV on, as background noise, and sitting in a chair or bed waiting for the hour hand to move so the day is closer to its end.

That sounds like depression. But for me, it's not. It's merely my life.

“Were my spirits good?” Easy answer. See the above.

My neurosurgeon told me there are no more treatments or surgical possibilities for me. They all have unknown risks and it’s not certain they would help. So, when I was asked, “Do you feel helpless?” and “Do you feel hopeless?'” my answer was yes to both questions. Because my situation is hopeless and helpless. The medical profession has told me so.

Margaret’s next question; “Do you prefer to stay at home rather than go out and do new things?” could have been two questions for me: "Do you prefer to stay at home?' No, I don't. "Would you prefer to be able to go out and do new things?" Yes, I would, but the pain won't let me.. 

“Do you think most people are better off than you?” was the last question. And the hardest for me to answer. In one sense, yes, because most people don't have chronic pain and they're not housebound. But I am in good shape physically, absent the eye and face pain, and my brain and mind work well. I am independent. So no, they are not better off than me. 

It all depends on the slant of the questions and the slant of the answers. 

Most of Margaret’s questions are not intended for people in pain. I don't expect them to make ones specific for the pain community and I'm not sure, given the spectrum of chronic pain and disability, if that is even feasible.  

We need to be seen for what we are. We are not “normal,” so please stop expecting that of us. 

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.