Biologic Drug May Prevent Rheumatoid Arthritis

By Pat Anson, PNN Editor

A biologic drug used to treat rheumatoid arthritis and other autoimmune conditions appears to be effective in preventing the disease from developing, according to the results of a mid-stage clinical trial.

Abatacept is a disease modifying antibody that was approved by the FDA in 2005 to treat moderate to severe rheumatoid arthritis (RA). Sold under the brand name Orencia, the drug interferes with the immune activity of T-cells, which helps reduce the inflammation and joint pain caused by RA. Abatacept is also used to treat psoriatic arthritis and juvenile idiopathic arthritis.

In the phase 2b clinical trial, 213 adult patients in the UK and the Netherlands at high risk of RA were randomly divided into two groups. One group was given weekly injections of abatacept for a year, while the other group received a placebo. Their progress was followed for another 12 months.

The study findings, recently published in The Lancet, show that only 6% of participants in the abatacept group were diagnosed with RA during the treatment period, compared to 29% in the placebo group. After 24 months, 25% of patients in the abatacept group progressed to RA, compared to 37% in the placebo group.

Patients on abatacept also reported lower pain scores, better physical function and quality of life, and had less inflammation in their joints.

“This is the largest rheumatoid arthritis prevention trial to date and the first to show that a therapy licensed for use in treating established rheumatoid arthritis is also effective in preventing the onset of disease in people at risk,” lead author Andrew Cope, PhD, head of King’s College London Center for Rheumatic Diseases, said in a news release.

“These initial results could be good news for people at risk of arthritis, as we show that the drug not only prevents disease onset during the treatment phase but can also ease symptoms such as pain and fatigue.”

One of the patients who participated in the trial was Philip Day, a 35-year-old software engineer and soccer player who had to give up the sport due to joint pain. He was considered at high risk of RA.

“The pain was unpredictable, it would show up in my knees one day, my elbows the next, and then my wrists or even my neck. At the time, my wife and I wanted to have children and I realized my future was pretty bleak if the disease progressed,” Day said.

“Enrolling in the trial was a no-brainer; it was a ray of hope at a dark time. Within a few months I had no more aches or pains and five years on I’d say I’ve been cured. Now, I can play football (soccer) with my three-year-old son and have a normal life.”

There are a few caveats about abatacept. A year’s worth of treatment in the U.S. costs about $37,500, depending on insurance. Most insurers consider abatacept a second or third-line therapy, and won’t pay for it unless other medications are tried first.

Like other biologic drugs that suppress the immune system, abatacept can have adverse side effects such as respiratory tract infections, pneumonia, flu, dizziness, nausea and diarrhea. Abatacept can also interfere with the effectiveness of vaccines.

Those are risks that many RA patients may be willing to accept, given the progressive nature of the disease, which cannot be cured and often results in disability.

“There are currently no drugs available that prevent this potentially crippling disease. Our next steps are to understand people at risk in more detail so that we can be absolutely sure that those at highest risk of developing rheumatoid arthritis receive the drug,” said Cope.

The abatacept study was funded by Bristol Myers Squibb, the maker of Orencia.

How Does Kratom Relieve Pain?

By Dr. C. Michael White, University of Connecticut

Kratom doesn’t contain just one active ingredient; rather, it is made up of many substances that induce effects in the body. This is very common for natural products, since the cells of the plant make a variety of chemicals for different purposes.

When the body is experiencing pain, it releases hormones called endorphins that stimulate opioid receptors to mildly reduce the transmission of local pain sensations to the brain. This same process also causes the release of the neurotransmitter dopamine, inducing a feeling of pleasure to neutralize the pain.

Traditional opioids, like morphine and fentanyl, stimulate these same receptors to such a degree that they more potently numb pain, induce a euphoric feeling that can lead to addiction, and suppress the drive to breathe, which can result in death.

One of the key constituents of kratom is an organic compound called mitragynine. It interacts with the same opioid receptors as morphine and fentanyl, but does not recruit the beta-arrestin-2 (the reason for breathing suppression). As a result, kratom can provide pain relief with a lower risk of slowed or stopped breathing compared to traditional opioids.

Kratom also contains a small amount of 7-hydroxymitragynine, which is thought to more potently stimulate opioid receptors, leading to a greater risk of opioidlike adverse events.

One of the risks associated with kratom use is that products can differ dramatically in the doses of 7-hydroxymitragynine. In other words, one kratom product could be more dangerous than another. When kratom is used in high doses, it can lead to seizures and other issues. Since kratom products are not FDA-regulated, there is no uniformity to the products.

Is Kratom Legal?

Kratom’s current legal status is complicated. Kratom is not a prescription or over-the-counter drug, and while it is derived from a plant, it does not meet the FDA’s definition of a dietary supplement, food or food additive.

Natural products marketed in the U.S. before Oct. 15, 1994, were grandfathered in under the FDA’s list of dietary supplements. But since kratom came on the market later, the FDA would have to find, based on a history of use or other evidence, that when used under the conditions recommended or suggested in the labeling, the natural product can reasonably be expected to be safe – like the FDA does for all new dietary supplement ingredients.

In 2016, in response to increasing calls to poison control centers, the Drug Enforcement Administration sought to ban kratom by making it a Schedule I drug. This means the agency felt it had no currently accepted medical use and a high potential for abuse. But backlash from the public and support from congressional members made the agency postpone a final decision. So kratom is currently listed as a “drug of concern.”

Seven states and some counties have banned the sale of kratom. But in 2023, the U.S. House and Senate proposed legislation to prevent the FDA from regulating kratom more stringently than they do a dietary supplement or a food additive, in order to keep the product accessible to consumers.

Kratom Research Lacking

A 2024 literature review concluded that there are no clinical trials evaluating the effects of kratom on chronic pain management.

Research on acute pain tolerance in people is limited to a 2020 study that found participants who took a dose of kratom could endure immersion of their arms in an ice bath for significantly longer than those who did not take a dose of kratom. However, this study was conducted on chronic kratom users, and their pain tolerance before they took their dose for that study was much lower compared to that of non-kratom users in other studies. This suggests that chronic kratom use is lowering people’s background pain tolerance.

This is similar to another study showing that when people tried to stop taking kratom after chronic use, they experienced significant pain throughout their body. This increased sensitivity and reactivity to pain, called hyperalgesia, also occurs with traditional opioids and is one of the reasons why people who use them chronically find it so difficult to get off them.

Taken together, these studies suggest caution before starting kratom as a treatment for chronic pain, especially if safer methods such as acetaminophen, icing and heating, and physical therapy can suffice.

Some people also claim that kratom could be a natural treatment for withdrawal and other effects of opioid use disorder, the clinical term for opioid dependence.

A few methodologically weak studies reported that participants were able to reduce or stop their use of traditional opioids and that kratom reduced the severity of opioid withdrawal symptoms. These include diarrhea, runny nose and eyes, shaking, fast heartbeat and anxiety.

However, there are no clinical trials comparing kratom to methadone, buprenorphine or naltrexone, the FDA-approved treatment options for opioid use disorder. So if patients have access to traditional FDA-approved therapies, these are the safest and best place to start.

If traditional options are not effective or patients cannot access them due to financial or logistical barriers, kratom may be a potential alternative to illegal opioid products, but it is certainly not risk free. Speaking with a health care professional is critical before making treatment decisions.

C. Michael White, PharmD, is a Distinguished Professor and Chair of the Department of Pharmacy Practice at the University of Connecticut School of Pharmacy. He has been studying the science behind kratom to help consumers better understand its potential benefits and adverse effects.

White’s research work has been funded by the Agency for Healthcare Research and Quality (AHRQ), Donaghue Foundation, Pfeiffer Foundation, and American College of Clinical Pharmacy.

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

There’s an App for That  

By Barby Ingle, PNN Columnist

Have you noticed that many healthcare companies, medical providers and support groups now have apps for patients?

A recent survey found that about 40% of U.S. adults use healthcare apps and 35% use wearable devices to track their fitness, sleep, diet and other health-related activities. The market for healthcare apps was estimated to be worth $10 billion in 2022 and is expected to grow to $41 billion by 2030.

There are some great “patient-centric” apps. Patient-centric or "person-centered care" means the technology approaches healthcare in a manner that directly involves patients. I have used apps to track my eating, hydration, movement, medications, sleep time and more. Some apps can also help you organize your medical care and recognize issues or changes needed in your medical records.

Patient Portal Apps

The patient portal apps I suggest below are typically set up by the provider, and then the patient can log in and check their records, set up appointments, and access other resources. There are many choices for medical providers to use for patient portals, but these seem to be the ones used the most:  

  • HealthTap: This telehealth app connect patients with primary care doctors for online care. Patients can use HealthTap for checkups, prescriptions, lab tests, treatment plans, and specialist referrals. They take patients with and without insurance. Costs start as low as $15 a month, making this affordable for even those without insurance.

  • MyChart: This one is my personal favorites and I use it often, as do most of my providers in Arizona. I used MyChart this morning to check on my appointments and to pay an outstanding balance. This app can also give friends and family access to your medical records if you choose. It is excellent for parents to take care of their children and other family members from one account. It will store your medical and lab records, and even some images from MRIs, x-rays, etc. There is transparency in who has accessed your medical records, so you will know which providers have this information.

  • FollowMyHealth: This app allows patients to access their medical records, request prescriptions, schedule appointments, and send messages to medical providers and staff. FollowMyHealth can also connect with medical devices such as glucose, heart and blood pressure monitors, and digital scales.

Apps for General Health 

There are many apps for overall general health, with the most popular ones being Headspace, Talkspace, Doctor on Demand, Sleep Cycle, My Fitness Pal, Fooducate, Teladoc, Fitbit, Noom, mySugr, and WebMD.  I have used many of them, but I will focus on my top three:  

  • Fitbit: I never considered using a Fitbit watch until I won one from the WEGO Health Awards (now Health Union). I quickly got more involved in tracking my life by using the device. I loved how it could track my movement, sleep and stress levels, and allowed me to put in notes on things such as hydration, migraines and gastrointestinal challenges. I also like Fitbit’s PurePulse, which tracks blood flow and heart rate. FitBit devices range from $80 to $300 each.

  • Noom: This is a subscription-based app that helps users track their food intake and exercise. Noom uses psychology to help users develop healthy eating and physical activity habits to lose weight. It takes a lot of dedication and focus to use Noom successfully. I lost over 20 pounds using it. I am not very active physically, and they considered that in developing an individualized program for me as a chronic pain and rare disease patient. The app encourages you to think about food differently and change your eating habits so your body works better for you. The average subscription is $60 monthly.  

  • Sleep Cycle: This app tracks and analyzes your sleeping patterns. It was helpful for me to take sleep data from the app to my primary care provider so he could better understand why I have trouble sleeping. I do not sleep consistently through the night, especially on high-pain days. It’s a good tool to figure out why you are struggling to sleep and how pain is affecting your internal clock or waking you up. The Sleep Cycle app is free to download, but a premium subscription costs $40 per year. I used the free accessible portions of the app at no cost.

Chronic Pain Apps

There are many apps that can help a patient track their pain levels, types of pain, whether treatment options are helping or hurting, and more. I used to do this the old-fashioned way with a journal, but having digital data to break it down scientifically for my providers was helpful once I started using pain-tracking apps. I have tried a few and heard others find them helpful as well.  

  • PainChek: This app uses artificial intelligence (AI) and facial expressions to assess pain in people who cannot reliably communicate their pain levels, such as those with dementia or young children. PainChek uses a smartphone camera to analyze a person's face. The AI system then automatically recognizes and documents facial movements that indicate pain. It’s more of an objective tool for me, since I can speak about my pain, but for those who are voiceless, it could help their daily life and individualize their care. 

  • Vivify:  This is a 28-day program for people with chronic back or neck pain that includes pain education, meditation, exercises, and guided walks through an app or website connection. Vivify also monitors patients remotely, allowing providers to create and manage wellness programs for their patients. Although the goal is to “overcome or remove chronic pain entirely,” I see this app as more of a tool for people to assist in their daily activities and motivate them to move.

  • My Pain Diary:  This pain-tracking app reminds me of when I used to manually keep track of my pain before apps were available. It gives patients a way to document and track their pain triggers and symptoms. You can also use the data to print detailed reports that are easy to share with your providers. I like the color-coded calendar, graphs and searchable history. The app looks at the data and sees trends you may not notice yourself. The Gold Edition of My Pain Diary costs just $5.

  • PainScale: This app was recommended to me by a friend. PainScale is made by Boston Scientific and helps users track their pain, suggests treatment options, and generate reports to providers. It can also provide information from the Mayo Clinic, WebMD and other trusted pain resources to help patients manage chronic pain triggers. This app is free to download.  

The apps mentioned above are some of the most used and trusted apps by patients and providers. Patient-centric apps have become an essential part of the healthcare industry. As technology and AI continue to advance, we can expect to see more of these innovative patient apps in the future.

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 the founder and former President of the International Pain Foundation. You can follow Barby at www.barbyingle.com. 

Researchers Find No Clear Link Between Weather and Pain

By Pat Anson, PNN Editor

The Greek philosopher Hippocrates in 400 B.C was one of the first to suggest that changes in the weather can worsen pain conditions. Since then, a large body of folklore and personal anecdotes have reinforced that belief – although the science behind it is mixed, at best.

A large new systematic review – a study of studies – is once again throwing cold water on the common belief that chilly, rainy weather can trigger muscle and joint pain.

“There is a common perception that there is an increase of musculoskeletal symptoms such as back pain, hip pain or arthritic symptoms during certain types of weather,” said lead author Manuela Ferreira, PhD, Principal Research Fellow at the Institute of Bone and Joint Research, the University of Sydney. “Our research challenges that thinking by showing that come rain or shine, weather has no direct link with most of our aches and pains.”

Ferreira and her colleagues started out by reviewing over 1,100 studies involving weather and pain, rejecting most because they were small or poor quality. Only eleven studies met their criteria for inclusion. An analysis of those studies found no sign that humidity, air pressure, temperature or precipitation significantly raise the risk of a pain flare from rheumatoid arthritis or low back and knee pain.

But they did find evidence that a combination of warm temperatures and low humidity is associated with a higher risk of a pain flare in people with gout, a form of arthritis that causes severe pain and swelling in the joints of the feet and lower legs.

The study was published in the journal Seminars in Arthritis and Rheumatism.

“Although changes in weather conditions are frequently described by patients as triggers for pain and other symptom exacerbation, they do not appear to be significant risks for knee, hip, low back pain, or headache exacerbation, and have a small influence in symptom exacerbation of gout disease,” researchers concluded.

A 2017 study in Australia had similar findings, showing no association between back pain and changes in temperature, humidity, air pressure, wind direction or precipitation. Damp weather appeared to make people more aware of their pain, but the symptoms disappeared as soon as the sun came out – suggesting there’s a psychological cause.

Another recent study in the UK found only a modest association between weather and pain. The Cloudy with a Chance of Pain study collected data from 10,500 people who recorded their daily pain levels on a smartphone app for over a year. The GPS location of their phones was then compared to local weather conditions. Participants reported feeling more pain on days with low barometric pressure – and the wet and windy weather that usually comes with it.

Hippocrates may or may not have a point, but researchers say people in pain would be better off paying less attention to the weather and more on getting treatment.

“When seeking pain prevention and relief, both patients and clinicians should focus on how to best manage the condition, including weight management and exercises, and not focus on the weather and let it influence treatment,” says Ferreira.

‘Game Changing’ Study Finds Cause of Long Covid Brain Fog

By Pat Anson, PNN Editor

Inflamed and leaky blood vessels in the human brain appear to be the cause of brain fog and other cognitive issues in patients with Long Covid, according to a groundbreaking study by a team of Irish researchers.

The discovery that a viral infection may cause cognitive decline could help explain why memory loss, confusion and trouble concentrating is common in patients with other chronic illnesses, such as fibromyalgia, multiple sclerosis and chronic fatigue syndrome (ME/CFS).

Scientists at Trinity College Dublin and FutureNeuro used a specialized MRI to compare the brains of Long Covid patients with brain fog to those without brain fog.

The MRI images show how Long Covid can affect the brain’s delicate network of blood vessels. Patients with brain fog (right column) have significantly more inflammation and blood vessel leakage than those without brain fog (left column).

Patients with brain fog also had more elevated levels of glial fibrillary acidic protein (GFAP) in their blood, which is a sign of cerebrovascular damage often found in patients with repetitive head trauma.

The images and findings are published in the journal Nature Neuroscience.

“For the first time, we have been able to show that leaky blood vessels in the human brain, in tandem with a hyperactive immune system, may be the key drivers of brain fog associated with Long COVID,” said lead author Matthew Campbell, PhD, a Professor in Genetics and Head of Genetics at Trinity College, and Principal Investigator at FutureNeuro. 

“The concept that many other viral infections that lead to post-viral syndromes might drive blood vessel leakage in the brain is potentially game changing and is under active investigation by the team.” 

NATURE NEUROSCIENCE

About 10% of the people infected with the SARS-CoV2 virus develop Long Covid, a broad range of conditions that causes fatigue, shortness of breath, and muscle and joint pain. About half of Long Covid patients also report brain fog or some lingering neurological issue. 

“The findings will now likely change the landscape of how we understand and treat post-viral neurological conditions. It also confirms that the neurological symptoms of Long Covid are measurable with real and demonstrable metabolic and vascular changes in the brain,” said co-author Colin Doherty, Professor of Neurology and Head of the School of Medicine at Trinity, and Principal Investigator at FutureNeuro. 

In recent years, research has found that multiple sclerosis, lupus and other autoimmune conditions are triggered by the Epstein-Barr virus. The exact mechanism is unclear and proving there is a direct link between viral infections and brain fog has been challenging – until now.   

“Our findings have now set the stage for further studies examining the molecular events that lead to post-viral fatigue and brain fog. Without doubt, similar mechanisms are at play across many disparate types of viral infection and we are now tantalisingly close to understanding how and why they cause neurological dysfunction in patients,” said first author Chris Greene, PhD, a research fellow in the School of Genetics and Microbiology at Trinity.

The study was funded by Science Foundation Ireland, the European Research Council and FutureNeuro, a research center for chronic and rare neurological diseases.

Prescription Opioids Play Only Minor Role in Overdose Crisis

By Pat Anson, PNN Editor

The role of prescription opioids in the nation’s overdose crisis continues to shrink.

In a new study from the drug testing firm Millennium Health, researchers say multiple substances were found last year in nearly 93% of urine samples in which fentanyl was detected. That is not altogether surprising, as “polysubstance” use increased as fentanyl came to dominate the illicit drug supply, appearing in more and more street drugs such as heroin, cocaine and methamphetamine.

What is surprising is the minimal role that prescription opioids now play. In 2013, opioid pain medication was the most common substance found in fentanyl-positive drug tests in the United States, appearing in over 70% of urine samples.  A decade later, prescription opioids were detected in less than one in ten samples — ranking far behind methamphetamine, cannabis, cocaine and heroin.

In fact, you are about twice as likely to find two other medications -- benzodiazepines (15.8%) and gabapentin (13.3%) -- than you are prescription opioids (7.6%) in urine samples testing positive for fentanyl.

Substances Detected in Fentanyl-Positive Drug Tests (2023)

MILLEnNIUM HEALTH

Millennium based its findings on over 4.1 million urine drug tests (UDTs) collected from 2013 to 2023 and analyzed through mass spectrometry. Because many of those samples came from people being treated for a substance use disorder, they offer a clear insight into drug trends that are driving the overdose crisis.

Now in its “fourth wave,” Millennium says a tidal shift has occurred in the so-called opioid epidemic, with illicit drug users far more likely to use non-opioid substances like stimulants than prescription opioids.

“National, regional, and state-level UDT data all suggest that people who use fentanyl are now, intentionally or unintentionally, much more likely to also use methamphetamine and cocaine,” the report found. “The results of our analyses also reveal shifting patterns of opioid use among those who use fentanyl. More specifically, they showed progressive declines in prescription opioid use from 2015 to 2023.”

The declining role of prescription opioids can be traced back to the 2016 CDC opioid guideline and a multiyear campaign by the DEA to slash opioid production quotas, which has reduced the supply of oxycodone and hydrocodone by about two-thirds. There is little evidence either of those federal efforts reduced the number of overdoses. The CDC estimates there were over 111,000 drug deaths in the 12-month period ending in September 2023 — nearly double the number of fatal overdoses in 2016.

The growing use of stimulants such as methamphetamine makes it difficult for public health campaigns to address the problem. Unlike opioids, there are no FDA-approved medications for stimulant use disorder, leaving behavioral therapies and abstinence as the only “evidence-based” treatments for people with a stimulant problem.

“Stimulants are a serious national challenge emphasizing the need for continued progress on the national plan to address methamphetamine supply, use, and consequences,” Millennium said.

Rx Opioid Misuse Rare in Children with Sickle Cell Disease

By Pat Anson, PNN Editor

Children with sickle cell disease show no signs of misusing or becoming addicted to opioids after being treated for an acute pain crisis, according to a new study.

Sickle cell disease is a genetic disorder that causes red blood cells to form in a crescent or sickle shape, which creates painful blockages in blood vessels – known as a vaso-occlusive crisis (VOC) -- that can lead to seizures, strokes and organ failure. About 100,000 Americans live with sickle cell disease, primarily people of African or Hispanic descent.

In a retrospective cohort study involving 725 children with sickle cell disease (SCD), researchers at Georgia State University found “no concerning patterns of long-term or increasing use of opioids” within 3 years of their first opioid prescription.

A VOC is a life-threatening condition that is the most common reason for an SCD patient to visit a hospital or emergency room. Guidelines for emergency VOC treatment call for opioids and other analgesics to be administered with one hour. However, due to the stigma associated with opioids and fears of addiction, many SCD patients face long delays before receiving treatment, as well as discrimination and suspicion that they are seeking opioids to get high.

The study findings, published in JAMA Pediatrics, found little evidence to justify those fears. In the 725 children who were studied – all under the age of nine – only one pattern of low opioid use was found.  Most of the children used opioids sparingly, with only one in four (25.4%) having an opioid prescription for codeine or hydrocodone filled for them within five days of being discharged from a hospital after a VOC.

Researchers say more studies are needed to determine whether the limited use of opioids shows the effectiveness of nonopioid pain management or highlights “an unintended and potentially harmful treatment access problem” caused by opioid phobia.

"Because of the opioid epidemic, it's important to make sure that people understand that when giving prescriptions for children with sickle cell disease, you aren't creating folks who are going to misuse opioids," lead author Angela Snyder, PhD, of the Georgia Health Policy Center at Georgia State University, told MedPage Today.

In 2020, a report by the National Academies of Sciences, Engineering, and Medicine called for major changes in the way sickle cell disease is treated in the United States, including an end to the discrimination and stigma that many sickle cell patients face.

My Story: Kratom Helps Treat Fibromyalgia

By Jim Hunter

The following narrative is not meant as medical advice. I am not a medical professional. I am simply relating my own experience.

Most of my adult life I have suffered from a variety of symptoms that were never diagnosed by any of the doctors I saw. Eventually, I became aware that these symptoms seemed to be consistent with the list of symptoms that appear under the heading of fibromyalgia. The most conspicuous symptom was painful muscles all over my body. The one symptom often associated with fibromyalgia that I did not have was insomnia.

Do I actually have fibromyalgia? I don’t know. What I have is an assortment of symptoms that, when compared to a checklist for fibromyalgia, make it look pretty close to that mysterious affliction.  Since there seemed to be no reliable objective signs of fibromyalgia, and I seemed to have almost all the subjective ones, it seemed reasonable to diagnose myself as having it.

I treated it for a long time (years) by taking more ibuprofen than is recommended for pain relief. The ibuprofen did help some, so I took more than I should have. I am not recommending anyone else do this, but I didn’t see an alternative at the time.

Then I discovered kratom. I don’t recall how I happened to run into it. But I discovered that when I took small doses of kratom regularly throughout the day, the fibromyalgia symptoms simply went away. Above all else, I didn’t hurt anymore.

Kratom even cleared up the stomach and intestinal problems. That was a surprise. I figured that anything that tasted as harsh as kratom wouldn’t help my stomach, but it did.

As long as I didn’t take too much kratom, I didn’t have any loopy feelings. I didn’t mind the slightly euphoric sensations it sometimes generated, but I learned to fine tune it so I didn’t experience that. It simply took away all the muscle aches and pains, fatigue and stomach problems. I felt normal again and was productive.

A Complication

That happy state facilitated by kratom lasted for years. But then I ran into a glitch. I got an inguinal hernia that strangulated. The surgeon was able to push it back in, but that was clearly just a temporary solution. Clearly, I needed surgery. One can die a nasty death from a strangulated hernia.

There was a complication about whether the local hospital could do the operation or whether my condition would require a bigger hospital with an intensive care unit. They eventually agreed on the local hospital (which is what I wanted), but the only glitch was that I had barely mentioned my use of kratom and sort of played it down. I was pretty sure most of the professionals in the medical field would be suspicious of it. Kratom is, after all, reported to have a mild opioid-like effect.

I’m 83 years old. I was perfectly willing to take any reasonable risk in surgery. I am not going to live forever, and I suspect that the end will not be decades off.

But I did feel obligated to the hospital that agreed to do the operation. I had to either level with them about the kratom I was taking or get off it. I knew that if I explained everything in detail, it would raise questions again about who should do the operation and when. I imagined there might be an issue with a possible interaction of kratom with anesthesia.

I decided to get off the kratom, at least long enough for the operation. There might be some withdrawal symptoms, but they were described in the literature as mild to moderate and short lived.

So, I began phasing out my kratom, for which I calculated I needed about two weeks. Two weeks stretched into three and then four. I was feeling horrible – considerably worse than what was described as kratom withdrawal. This was neither short, nor mild or moderate.

Then my wife put her finger on the problem. The symptoms for withdrawal and fibromyalgia, though similar, were not exactly the same. I was experiencing less nausea, but more pain. The fibromyalgia was back in full force. At that point, as I saw it, I had no choice. I took a little bit of kratom once again and felt fine, except for the hernia.

It was while on the minimal dose of kratom needed for the fibromyalgia that I went in for surgery. After the operation, the anesthesiologist reported that her part of the operation went well. I was relieved. However, another problem emerged. An expected two or three-hour operation with laparoscopic surgery turned into a seven-hour ordeal.

I still cannot visualize the exact nature of the unexpected problem the surgeon encountered. Apparently, my bladder was drawn into and tangled up with the hernia. The surgeon, who had done this operation thousands of times, had never seen it before and nobody else had heard of it.

The surgeon was able to unravel the problem and repair the hernia. This led to yet another problem. I had expected to be in the hospital most of one day, but they kept me in the hospital overnight and, as far as I knew, might keep me hospitalized even longer.

By three in the morning, I was beginning to experience moderate to severe pain. The medication given to me by the night nurse didn’t touch the pain. I realized I had no choice. I had to confess my sin -- the incomplete and unsatisfactory way I told them about the kratom -- and plead for mercy.

I called in the night nurse and explained the whole thing. She was very nice about it, let the head nurse know right away, and notified the surgeon as soon as he arrived in the morning.

To make a long story short, arrangements were made for me to be released from the hospital so I could resume my regime of small doses of kratom.

I had lots of minor aches and pains from being worked on so hard and so long during the operation, while in an awkward position. They had raised my legs a considerable angle to the ground, expanded the inner cavities of my body with CO2, and done God knows what to separate my scrotum, testicles and whatever else from the hernia. But with some Aleve, these were now manageable pains. 

Do I have any advice? Not really. The nearest thing I can offer is to say that, should the situation rise again, I would simply tell the medical people about my dependence on kratom. And if they insisted that I get off it before they would do the surgery, I would not have the surgery done.

Jim Hunter lives in Maine. He is a retired social worker.

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.

Family Caregivers Face Financial Burdens, Isolation and Burnout

By Dr. Kathy Lee, University of Texas at Arlington

Millions of Americans have become informal family caregivers: people who provide family members or friends with unpaid assistance in accomplishing daily tasks such as bathing, eating, transportation and managing medications.

Driven in part by a preference for home-based care rather than long-term care options such as assisted living facilities, and the limited availability and high cost of formal care services, family caregivers play a pivotal role in the safety and well-being of their loved ones.

Approximately 34.2 million people in the United States provide unpaid assistance to adults age 50 or above, according to the Family Caregiver Alliance. Among them, about 15.7 million adult family caregivers care for someone with dementia.

Help celebrate National Caregivers Day (Feb. 16) by thanking someone who cares for a disabled loved one.

Challenging Situations

I am a licensed clinical social worker and an assistant professor of social work studying disparities in health and health care systems. I focus on underrepresented populations in the field of aging.

In my research focusing on East Asian family caregivers for people with Alzheimer’s and related dementia, I discovered that Chinese American and Korean American caregivers often encounter challenging situations. These include discrimination from health care facilities or providers, feelings of loneliness and financial issues. Some of these caregivers even find themselves having to retire early because they struggle to balance both work and caregiving responsibilities.

My findings join a growing body of research showing that family caregivers commonly encounter five specific challenges: financial burdens, limited use of home- and community-based services, difficulties accessing resources, a lack of knowledge about existing educational programs, and physical and emotional challenges, such as feelings of helplessness and caregiver burnout.

However, researchers are also finding that family caregivers feel more capable of managing these challenges when they can tap into formal services that offer practical guidance and insights for their situations, as well as assistance with some unique challenges involved with family caregiving.

Most Caregivers Are Women

More than 6 in 10 family caregivers are women.

Society has always expected women to take on caregiving responsibilities. Women also usually earn less money or rely on other family members for financial support. This is because equal pay in the workplace has been slow to happen, and women often take on roles like becoming the primary caregiver for their own children as well as their aging relatives, which can drastically affect their earnings.

While nearly half of care recipients live in their own homes, 1 in 3 live with their caregivers.

Sometimes termed “resident caregivers,” these individuals are less likely to turn to others outside the family for caregiving support, often because they feel that it’s important to keep caregiving within the family. These caregivers are typically older, retired or unemployed and have lower income than caregivers who live separately.

According to a 2020 report from the AARP Public Policy Institute, about 1 in 3 family caregivers provide more than 21 hours of care a week to a loved one.

Support Programs for Caregivers

Caregiving often creates financial burdens because it makes it harder to hold a full-time or part-time job, or to return to work after taking time off, particularly for spouses who are caregivers.

Often, community-based organizations such as nonprofits that serve older adults offer a variety of in-home services and educational programs. These can help family caregivers manage or reduce the physical and emotional strains of their responsibilities. However, these demands also can make it difficult for some caregivers to even learn that these resources exist, or take advantage of them, particularly as the care recipient’s condition progresses.

These challenges worsened at the height of the COVID-19 pandemic. Many support programs were canceled, and it was hard to access health care, which made things even more stressful and tiring for caregivers.

Research shows that those who are new to family caregiving often take care of their loved ones without any formal support initially. As a result, they may face increased emotional burdens. And caregivers age 70 and above face particular challenges, since they may be navigating their own health issues at the same time. These individuals are less likely to receive informal support, which can lead to social isolation and burnout. 

There are numerous programs and services available for family caregivers and their loved ones, whether they reside at home or in a residential facility. These resources include government health and disability programs, legal assistance and disease-specific organizations, some of which are specific to certain states.

In addition, research has found that providing appropriate education and training to people in the early stages of caregiving enables them to better balance their own health and well-being with successfully fulfilling their responsibilities. Many community-based organizations, such as local nonprofits focused on aging, as well as government programs or senior centers, may offer case management services for older adults, which can be beneficial for learning about existing resources and services.

For family caregivers of people with dementia, formal support services are particularly crucial to their ability to cope and navigate the challenges they face.

Formal support may also be helpful in finding affordable home-based and community resources that can help compensate for a lack of informal support. These include home health services funded by Medicare and Medicaid-funded providers of medical and nonmedical services, including transportation.

Medicaid, which targets low-income Americans, seniors, people with disabilities and a few select other groups, has certain income requirements. Determine the eligibility requirements first to find out whether your loved one qualifies for Medicaid.

The services and support covered by Medicaid may vary based on a number of factors, such as timing of care, the specific needs of caregivers and their loved ones, the care plan in place for the loved one and the location or state in which the caregiver and their loved one reside.

Each state also has its own Medicaid program with unique rules, regulations and eligibility criteria. This can result in variations in the types of services covered, the extent of coverage and the specific requirements for accessing Medicaid-funded support.

If so, contact your state’s Medicaid office to get more information about self-directed services and whether you can become a paid family caregiver.

Medicare may help pay for certain home health services if an older adult needs skilled services part time and is considered homebound.

This assistance can alleviate some of the caregiving responsibilities and financial burdens on the family caregiver, allowing them to focus on providing care and support to their loved ones without worrying about the cost of essential medical services.

Peer-to-peer support is also crucial. Family caregivers who join support groups tend to manage their stress more effectively and experience an overall better quality of life.

Kathy Lee, PhD, is an Assistant Professor of Gerontological Social Work at University of Texas at Arlington. Her primary focus lies in exploring innovative and non-pharmacological interventions for individuals living with Alzheimer's disease and related dementias, as well as providing support for their family caregivers.

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

DEA Urged to End ‘Red Flag’ Policy for Pharmacies

By Pat Anson, PNN Editor

A coalition of telehealth companies is urging the U.S. Drug Enforcement Administration to stop telling pharmacies to be careful about filling prescriptions for opioids and other controlled substances that originate from out-of-state.

The DEA’s “red flag” policy has had a chilling effect on doctors and patients nationwide, including those that use telehealth services. Many pain patients have found that pharmacies won’t fill opioid prescriptions written by doctors that are not near them geographically.  

In an open letter to the DEA, the American Telemedicine Association and a handful of telehealth providers said “clearer green lights” were needed from the DEA on how to safely dispense controlled substances, not more red flags.

“The DEA should provide explicit guidance to the pharmacy community that geography of a prescriber in relation to the patient or the pharmacy should not be a ‘red flag’ when a prescription is a result of a telehealth visit,” the letter states. “The distance of a telehealth prescriber from the patient alone should not give a pharmacist a signal that the prescription may be illegitimate.”

The DEA relaxed telehealth rules three years ago at the start of the Covid-19 pandemic, to allow for opioids, stimulants, sedatives and other controlled substances to be prescribed remotely via telehealth. Those temporary rules have been extended until the end of 2024, to give the DEA more time to develop permanent ones to govern telehealth.

Many pharmacies haven’t gotten the message. In a recent PNN survey, over 90% of pain patients with an opioid prescription said they had trouble getting a pharmacy to dispense their medication. Drug shortages are the primary cause, but so is the fear of some pharmacists that they could get in trouble or even lose their jobs if they filled a prescription deemed suspicious because it comes from out-of-state.

“In conversations with the pharmacy community and in our experience as prescribers, we have determined many pharmacies and pharmacists are currently considering geography as a ‘red flag.’ While red flags are not defined in statute or regulations or other official guidance, in the wake of the overprescribing and overdispensing contributing to the opioid epidemic, pharmacists have been directed to do so as a part of their corresponding responsibility, or due diligence to ensure that prescriptions are legitimate,” the letter from the telehealth coalition states.

‘An Unusual Distance’

Federal laws and regulations may not clearly define what a red flag is, but the onus is clearly put on pharmacies to catch them:

“[A] pharmacist or pharmacy may not dispense a prescription in the face of a red flag (i.e., a circumstance that does or should raise a reasonable suspicion as to the validity of a prescription) unless he or it takes steps to resolve the red flag and ensure that the prescription is valid.”

Under a 2022 opioid litigation settlement, drug distributors and big chain pharmacies agreed to tightly limit the supply of opioids and be on the lookout for suspicious orders. That includes patients with prescriptions for “highly diverted controlled substances” written by doctors from a zip code 50 miles or more from a pharmacy. Pharmacies with a high volume of those prescriptions risk having their drug supplies further restricted or cutoff.

DEA investigators and federal prosecutors have long targeted doctors and pharmacies that have out of state patients. In 2021, for example, DEA suspended the license of a Florida pharmacy that “repeatedly ignored obvious red flags of abuse or diversion,” including a high number of patients who traveled “an unusual distance” to obtain their prescriptions.

Contrary to popular belief, opioid diversion is rare. The DEA estimates that less than one percent of oxycodone (0.3%) and hydrocodone (0.42%) medications are lost, stolen or diverted.

Another example of a provider being red-flagged came in 2022, when DEA suspended the controlled substance license of Dr. David Bockoff, a California physician who treated many chronically ill patients from out of state who couldn’t find local providers.

Within days of Bockoff’s suspension, one of his patients and his wife died by suicide at their home in Georgia. A few weeks later, another patient died at her home in Arizona, apparently from complications caused by opioid withdrawal. Neither of those patients were using telehealth to see Dr. Bockoff, but their deaths highlight how red flags and heavy-handed oversight of medical providers can have serious consequences.    

“DEA must use this opportunity to make clear what their expectations are for pharmacists in filling telehealth prescriptions of controlled substances,” the letter from the telehealth coalition warns. “If DEA simply adds recordkeeping, reporting, or data requirements to the overwhelming workload pharmacies and pharmacists already face, access issues will only be exacerbated.”

Ageism: A Wake-Up Call for Baby Boomers

By Judith Graham, KFF Health News

The covid-19 pandemic would be a wake-up call for America, advocates for the elderly predicted: incontrovertible proof that the nation wasn’t doing enough to care for vulnerable older adults.

The death toll was shocking, as were reports of chaos in nursing homes and seniors suffering from isolation, depression, untreated illness, and neglect. Around 900,000 older adults have died of covid-19 to date, accounting for 3 of every 4 Americans who have perished in the pandemic.

But decisive actions that advocates had hoped for haven’t materialized. Today, most people — and government officials — appear to accept covid as a part of ordinary life.

Many seniors at high risk aren’t getting antiviral therapies for covid, and most older adults in nursing homes aren’t getting updated vaccines. Efforts to strengthen care quality in nursing homes and assisted living centers have stalled amid debate over costs and the availability of staff. And only a small percentage of people are masking or taking other precautions in public despite a new wave of covid, flu, and respiratory syncytial virus infections hospitalizing and killing seniors.

In the last week of 2023 and the first two weeks of 2024 alone, 4,810 people 65 and older lost their lives to covid — a group that would fill more than 10 large airliners — according to data provided by the CDC. But the alarm that would attend plane crashes is notably absent. (During the same period, the flu killed an additional 1,201 seniors, and RSV killed 126.)

“It boggles my mind that there isn’t more outrage,” said Alice Bonner, 66, senior adviser for aging at the Institute for Healthcare Improvement. “I’m at the point where I want to say, ‘What the heck? Why aren’t people responding and doing more for older adults?’”

It’s a good question. Do we simply not care?

I put this big-picture question, which rarely gets asked amid debates over budgets and policies, to health care professionals, researchers, and policymakers who are older themselves and have spent many years working in the aging field. Here are some of their responses.

Pandemic Made Ageism Worse

Prejudice against older adults is nothing new, but “it feels more intense, more hostile” now than previously, said Karl Pillemer, 69, a professor of psychology and gerontology at Cornell University.

“I think the pandemic helped reinforce images of older people as sick, frail, and isolated — as people who aren’t like the rest of us,” he said. “And human nature being what it is, we tend to like people who are similar to us and be less well disposed to ‘the others.’”

“A lot of us felt isolated and threatened during the pandemic. It made us sit there and think, ‘What I really care about is protecting myself, my wife, my brother, my kids, and screw everybody else,’” said W. Andrew Achenbaum, 76, the author of nine books on aging and a professor emeritus at Texas Medical Center in Houston.

In an environment of “us against them,” where everybody wants to blame somebody, Achenbaum continued, “who’s expendable? Older people who aren’t seen as productive, who consume resources believed to be in short supply. It’s really hard to give old people their due when you’re terrified about your own existence.”

Although covid continues to circulate, disproportionately affecting older adults, “people now think the crisis is over, and we have a deep desire to return to normal,” said Edwin Walker, 67, who leads the Administration on Aging at the Department of Health and Human Services. He spoke as an individual, not a government representative.

The upshot is “we didn’t learn the lessons we should have,” and the ageism that surfaced during the pandemic hasn’t abated, he observed.

“Everyone loves their own parents. But as a society, we don’t value older adults or the people who care for them,” said Robert Kramer, 74, co-founder and strategic adviser at the National Investment Center for Seniors Housing & Care.

The message to older adults is: ‘Your time has passed, give up your seat at the table, stop consuming resources, fall in line.’
— Anne Montgomery, Health Policy Expert

Kramer thinks boomers are reaping what they have sown. “We have chased youth and glorified youth. When you spend billions of dollars trying to stay young, look young, act young, you build in an automatic fear and prejudice of the opposite.”

Combine the fear of diminishment, decline, and death that can accompany growing older, with the trauma and fear that arose during the pandemic.

“I think covid has pushed us back in whatever progress we were making in addressing the needs of our rapidly aging society. It has further stigmatized aging,” said John Rowe, 79, professor of health policy and aging at Columbia University’s Mailman School of Public Health.

“The message to older adults is: ‘Your time has passed, give up your seat at the table, stop consuming resources, fall in line,’” said Anne Montgomery, 65, a health policy expert at the National Committee to Preserve Social Security and Medicare. She believes, however, that baby boomers can “rewrite and flip that script if we want to and if we work to change systems that embody the values of a deeply ageist society.”

Integration, Not Separation, Is Needed

The best way to overcome stigma is “to get to know the people you are stigmatizing,” said G. Allen Power, 70, a geriatrician and the chair in aging and dementia innovation at the Schlegel-University of Waterloo Research Institute for Aging in Canada. “But we separate ourselves from older people so we don’t have to think about our own aging and our own mortality.”

The solution: “We have to find ways to better integrate older adults in the community as opposed to moving them to campuses where they are apart from the rest of us,” Power said. “We need to stop seeing older people only through the lens of what services they might need and think instead of all they have to offer society.”

That point is a core precept of the National Academy of Medicine’s 2022 report Global Roadmap for Healthy Longevity. Older people are a “natural resource” who “make substantial contributions to their families and communities,” the report’s authors write in introducing their findings.

Those contributions include financial support to families, caregiving assistance, volunteering, and ongoing participation in the workforce, among other things.

“When older people thrive, all people thrive,” the report concludes.

That’s a message Kramer conveys in classes he teaches at the University of Southern California, Cornell, and other institutions.

“You have far more at stake in changing the way we approach aging than I do,” he tells his students. “You are far more likely, statistically, to live past 100 than I am. If you don’t change society’s attitudes about aging, you will be condemned to lead the last third of your life in social, economic, and cultural irrelevance.”

As for himself and the baby boom generation, Kramer thinks it’s “too late” to effect the meaningful changes he hopes the future will bring.

“I suspect things for people in my generation could get a lot worse in the years ahead,” Pillemer said. “People are greatly underestimating what the cost of caring for the older population is going to be over the next 10 to 20 years, and I think that’s going to cause increased conflict.”

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

Long Covid Linked to Chronic Pain Conditions

By Pat Anson, PNN Editor

People with chronic pain conditions such as fibromyalgia, chronic fatigue, migraine and irritable bowel syndrome are significantly more likely to have symptoms of Long Covid after a COVID-19 infection, according to a large new analysis.

Researchers at the University of Michigan analyzed electronic health records of over two million Americans and found that the risk of having Long Covid symptoms was higher in people with a chronic overlapping pain condition (COPC).  

Over half the patients (58.6%) with a COPC and a diagnosis of COVID-19 had symptoms of Long COVID, compared to only a third (33.6%) of those without a COPC.

“We hypothesized we’d see an increase in pain and fatigue because it’s something we’ve seen in the past with other infectious diseases, like the SARS outbreak in 2002,” said lead author Rachel Bergmans, PhD, a Research Assistant Professor at U-M’s Department of Anesthesiology, Chronic Pain and Fatigue Research Center. “A big predictor of future pain is having had pain in the past.”

Findings from the retrospective cohort study, published in the journal Pain, do not establish a definitive cause that links chronic pain with Long Covid – only an association.

It’s a bit of a chicken-and-egg situation. Many of the symptoms of Long Covid mirror those of COPCs – such as brain fog, chronic fatigue, headache and body pain – so it’s not clear which condition developed first. Interestingly, Long Covid symptoms were found in 24% of patients with a COPC who were not diagnosed with COVID-19.  

That finding could be explained by a relatively new concept in pain research called neuroplasticity or nociplastic pain – chronic pain that lingers and becomes heightened in the brain and central nervous system (CNS) long after the initial injury heals. 

“With nociplastic pain, some people have what you might call a pain setting turned up in their central nervous system. There’s evidence showing that infections, trauma, and stress can be a trigger for nociplastic pain features and related symptoms,” said Bergmans.

Nociplastic pain could also explain the cognitive dysfunction and other symptoms caused by Long Covid – known technically as post-acute sequelae of SARS-CoV-2 infection (PASC). The basket of symptoms now collectively known as Long Covid may have existed before COVID-19 even came along. In 2022, the CDC estimated that 18 million American adults had Long Covid.

“The onset of long COVID features was relatively common regardless of acute COVID exposure. In addition, those with pre-existing COPCs had an increased risk of being diagnosed with long COVID features. These findings reinforce the likelihood that nociplastic pain is a key mechanism in long COVID and can inform precision medicine therapies that avoid the pitfalls of viewing long COVID exclusively in the framework of infectious disease,” researchers concluded.

“For clinicians who treat people with long COVID, it may be helpful to review the medical record and see whether someone had a pre-existing COPC diagnosis before long COVID onset.”

Bergmans and all of her co-authors are either consultants or employees of Tonix Pharmaceuticals, a company that is developing new non-opioid treatments for fibromyalgia.

A Guardian Angel Stronger Than Pain

By Cynthia Toussaint, PNN Columnist

What I’m going to write about I can’t fully explain. There was a time when I would have been skeptical of my own forthcoming words. 

But here goes…

I’m certain that I’m in touch with another plain of existence due to my pain. To be precise, it’s a person I deeply love, a person I was never blessed to meet.

My aunt Grace has always been bigger than life to me, an angel who I named my work for. Like me, she was in the vortex of monumental generational trauma, the bread and butter of our family.

Despite my grandmother disowning Grace, her oldest daughter, then having her only other child, my mother, kidnapped, and then her ex-husband, my grandfather, committed, Grace managed to keep her feet planted on the ground.

With grit and dogged determination, she ran Grandpa’s dairy farm, regularly brought food to my mother, who was being starved by my grandmother, and eventually got her father out of the asylum. That’s a lot on one pair of shoulders.

Grace paid the ultimate price for her goodness in the jaws of trauma when she died from leukemia at age 20 in 1947. I’ve always been compared to my sweet aunt, and even repeated the familial illness pattern when I got Complex Regional Pain Syndrome at the same age, ending my life in a different way.

When I was diagnosed with aggressive breast cancer in 2019 and told by my doctors that the toll of fixing my dysfunctional family was the cause of my cancer and decades of pain, I brought Grace into my daily rituals and meditations for comfort. I was in treatment hell, and her essence was safe and loving and healing. With time, I discovered that Grace was my guardian angel.

When I brought this seemingly illogical ritual up with a respected integrative medicine colleague, he advised that “Ancestral Healing” is a real thing, something Native American people have done for millennia. He went on to share, “You instinctively knew to go there, Cynthia, because healing their trauma will heal your own.”

Over the last year, my daily conversations with Grace became so intense, I began asking her to visit me at my condo. The love I felt for her was profound and reciprocated so strongly, I just had to have her near.

You see, 2023 was the worst year of my life. After fighting a cancer recurrence, complications left me in the hospital near death. Then I had ever-piling pain problems seemingly signed, sealed and delivered from a dark realm. This led to crushing isolation compounded by COVID protocols, as I feared its long version would end me. I desperately needed my angel. 

This is when things got inexplicable, straining the boundaries of human logic and reason.

It started dead of night Christmas morning. My partner, John, and I have a tradition of keeping a small, faux tree in our bedroom, and this year we added a ballerina snow-globe to our light show.

Somehow, though one ran on battery and the other via cord, they both turned off while we slept. After checking them, we turned them back on, only to witness them go off a second time simultaneously later that morning. Separate power sources, no timers, no condo power outage.

The first time was beyond baffling, the second time I just knew. Grace had accepted my invitation. Both light show objects went off as many times as I could turn them back on during the season, and it felt loving and magical to know Grace was with me.

During this time, John recalled an incident shortly before Christmas. He was in our condo plaza giving our kitty some outdoor time, when he distinctly heard a friendly young woman say, “Hello, John.” The weird part was that no one was there. He only later connected the dots.

When the dreaded day came to take Christmas decor down, I sobbed and John’s eyes welled. It felt like we were saying goodbye to Grace until next year. But the “miracles” kept rolling.

That night, to curb our loss, I put up a large butterfly nightlight (run by batteries) given to me by a close girlfriend for my New Year’s Eve birthday. You guessed it. The next morning it was off.  Then the next, and the next. No timer, even changed the batteries. As of this writing, my butterfly goes off up to five times a night.

Other mystical things have happened, too numerous to mention, though they include a tree-top vintage angel, another vocal communication from a young woman and the number 1111, which I’ve learned signifies the nearness of a guardian angel. I still speak intimately to Grace every day during my Ancestral Healing work and have no doubt she salved me through the worst year of my life. You see, Grace is stronger than pain.

What do I make of all of this? I asked Grace to come, and she did. Every day I ask her to come again, and she does. I think she’s made herself known because I was in the right place and space to receive her love. I needed her like no other time.

And having her here, watching over me, comforting me, guiding me, eases my body and soul. I feel blessed, like I’m absorbed in a healing light of well-being. I’ve gone from a life of illness and desperation to one of wellness and gratitude. I’m even pursuing passions I’d let go of for far too long. 

I’ve come to believe that the universe bestows other-worldly gifts upon those who experience great loss. I also believe we women in pain are more sensitive than others, which is, in part, why we have pain. But that sensitivity, that portal if you will, can bring us blessings more powerful than pain - if we are prepared to receive and believe.

He, she, it, they are ready to help, to guide, to ease. Seek the sacred and be open to its grace.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and multiple co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Medical Marijuana Saved Me After Forced Opioid Tapering

By Christine Kucera

I can tell you outright that medical marijuana saved my life!  

I am an intractable pain patient who was harmed in 2019 when the chief medical officer at my well-known health institution decided to implement mandatory system-wide opioid policies for all doctors and patients, based on the CDC’s opioid guideline.

I am not opioid naive, don't have adverse reactions to opioids (other than some don't work on me), and I wasn't misusing or even at risk of overdose. But that didn't matter to the CMO. He forced my pain management provider to taper all his patients on opioids or risking losing his position.

I was subsequently tapered to 90 MME (morphine milligram equivalent), which was a third of the well-managed opioid regimen I was on for over 30 years.  Messed up, right?  

Medical marijuana/cannabis was the alternative of last resort for me. Unlike opioids, I'm extremely sensitive to marijuana, and need to be able to think and talk. As the taper continued, my ability to cope with unmanageable, agonizing pain went bye-bye. I couldn't sit, stand, lay down or sleep without the pain being unbearable. I was literally being tortured to death.  

I became severely ill, my health destabilized, and I was hospitalized numerous times. I became depressed and suicidal, reaching out to everyone for help as hopelessness set in. Thoughts about transitioning to death were my constant companion. 

I had a choice: fight with what's available or give in to despair. I refused to give up hope and decided to try medical marijuana. After discussing it with my provider, I applied for a Massachusetts medical marijuana license. Once approved, I immediately went to a dispensary and the experimentation began. 

Everyone will have different experiences with cannabis. Just like opioids, it depends how your body metabolizes it. I had more than a few negative experiences, but refused to give up. It took me 2 years of experimentation to figure out the right dose, strain (sativa, indica, hybrid) and preparation (flower, edibles, tinctures, topical).  

After a lot of trial-and-error, I found my goldilocks zone. It was micro dosing a 1:1 tincture (equal parts THC and CBD) and applying a 1:1 cream. That regime saved my life!  

Key to Success: Start Slowly 

Some important things I learned along the way:  

For naive patients using cannabis for the first time, I recommend starting with a couple drops of tincture (0.25ml to 0.5 ml under the tongue) every 6-8 hours. It can take upwards of 2 hours to feel the full effects. Do not consume additional tincture too soon or you will potentially experience a compounding effect, producing unwanted side effects.

Increasing the dose, amount and frequency should only be attempted once your body adjusts. Everyone has different titration periods, which can take days or weeks. Experimenting is the only way to figure out what will work for you personally.

I suggest going slowly, incrementally increasing the dose by 0.25ml (0.5ml, 0.75ml, 1ml and so forth) over days to weeks until you reach optimal effect. I personally use <0.25ml during the day and <0.5ml at night. During my experimentation period with the 1:1 tincture, I would try increasing every 3 days.

There are many types of tinctures. I do not recommend jumping straight to a full strain tincture, using indica or sativa, without building a tolerance first

The same goes for edibles. Cut them in half or even a third to start with. Remember it can take up to 2 hours for edibles to work, so don't take more or you may experience unwanted side effects. I could successfully microdose edibles 2-4 times daily, depending on need.  

Topicals are amazing and work! I prefer the ointment over creams and gels, but the costs can add up. You can make your own inexpensive topical by mixing a tincture with a favorite ointment or cream.  

For first time users, I don’t recommend smoking marijuana flower or buds until you've first built-up tolerance with a 1:1 tincture or edibles. Smoking has a much faster mode of action and it can be difficult to manage the unwanted side effects.  

If you're willing to experiment, I recommend smoking at night at home when you have no responsibilities. I found that was best. Start slowly with one very small hit, it doesn't take much. Wait approximately 15-20 minutes before deciding to inhale a second or third hit. The side effects can be bad if you smoke too much, especially if you haven't built up tolerance.  

Always research the side effects and talk with staff at the dispensary. They can help with selecting flower or edibles that have pain, sleep, and mood helping properties. 

If you live in a state where medical marijuana is legal, get a license or card to protect yourself from discrimination, pain management contracts, and urine drug tests. I informed my providers and gave them a copy of my license to put in my medical health records.  

Before you use marijuana, be sure to talk with your prescribing provider, as you don't want to unintentionally breach your pain contract. If you smoke at home, landlords may also be an obstacle. 

The war on drugs propaganda is only meant to illicit fear. Educate yourself about the benefits of marijuana. It's not a gateway drug. Utilized responsibly, with the right strain, dose and preparation, marijuana can help reduce pain, inflammation and anxiety. It is absolutely worth trying.   

Lastly, don't give up! 

Christine Kucera lives with psoriatic arthritis, spondyloarthropy, spondylitis, polyarthritis, sacroiliitis, degenerative joint disease, dermatomyositis, mixed connective tissue disease, spinal radiculopathy, hypoparathyroidism, rare endocrine tumors, psoriasis, endometriosis stage IV, pelvic adhesive disease, and other painful conditions.

Prior to becoming disabled, Christine was a healthcare research systems developer and analyst for federally funded CMS, AHRQ, and NIH grants and programs.

Dietary Supplements Need More Regulation

By Emily Hemendinger and Katie Suleta

Dietary supplements are a big business. The industry made almost $39 billion in revenue in 2022, and with very little regulation and oversight, it stands to keep growing.

The marketing of dietary supplements has been quite effective, with 77% of Americans reporting feeling that the supplement industry is trustworthy. The idea of taking your health into your own hands is appealing, and supplements are popular with athletes, parents and people trying to recover more quickly from a cold or flu, just to name a few.

A 2024 study found that approximately 1 in 10 adolescents have used nonprescribed weight loss and weight control products, including dietary supplements.

Notably, that systematic review found that nonprescribed diet pill use was significantly higher than the use of nonprescribed laxatives and diuretics for weight management. These types of unhealthy weight control behaviors are associated with both worsened mental health and physical health outcomes.

As a licensed clinical social worker specializing in treating anxiety disorders and eating disorders and a biomedical research director, we’ve seen firsthand the harm that these supplements can do based on unfounded beliefs. The underregulated market of dietary supplements is setting consumers up to be misled and potentially seriously harmed by these products.

Supplements Often Mislabeled

The Food and Drug Administration specifies that supplements must contain a “dietary ingredient” such as vitamins, minerals, herbs, amino acids, enzymes, live microbials, concentrates and extracts, among others.

Unfortunately, manufacturers can claim that a product is a supplement even when it doesn’t meet those criteria, such as products containing the drug tianeptine, a highly addictive drug that can mimic the biological action of opioids. Some of these products are labeled as dietary supplements but are anything but.

Products containing kratom, a substance with opioid-like effects, which are sold over the counter in many gas stations, claim to be herbal supplements but are mislabeled.

Under a 1994 law, dietary supplements are classified as food, not as drugs. This means dietary supplements are not required to prove efficacy, unlike drugs. Regulators also don’t take action on a product until it is shown to cause harm.

However, the FDA’s website states that “many dietary supplements contain ingredients that have strong biological effects which may conflict with a medicine you are taking or a medical condition you may have. Products containing hidden drugs are also sometimes falsely marketed as dietary supplements, putting consumers at even greater risk.”

In other words, supplements are regulated as food instead of drugs, even though they can interact with medications and may be laced with hidden drugs not included on the label.

Manufacturers of dietary supplements can make claims about their products that fall into three categories: health claims, nutrient content claims and claims about the product’s function, structure or both, all without needing to provide supporting evidence.

Misbranding and false advertising are rampant with dietary supplements, including false claims of curing cancer, improving immune health, improving cognitive functioning, improving fertility, improving cardiovascular health and, of course, promoting weight loss and weight control.

Hidden Dangers

You can find supplements that claim to be good for just about every health condition, concern or goal, so it should be no surprise that there are supplements marketed for weight loss.

In August 2021, the FDA cracked down on some of these weight loss products because of the presence of undeclared drugs. For example, of the 72 products recalled, the drug sibutramine, sold as Meridia, was found in 68 of them.

While the FDA may take further action beyond the recalls, the agency acknowledged that it is not able to test every weight loss supplement for contamination with drugs.

These crackdowns demonstrate some progress, though several issues remain. Warning label placement, ingredients and beliefs based on misleading or false advertising are still highly problematic.

Some weight loss supplements may have FDA warnings on them. Of those that do, the disclaimers are rarely displayed on the front of the product label, so consumers are less likely to see them.

Ingredients in weight loss supplements can and do have adverse effects. They have caused people to be admitted to the emergency room for cardiovascular and swallowing problems, including in young, seemingly healthy people.

Mental health concerns and eating disorders are on the rise. As a result, researchers are examining unhealthy weight control behaviors, including the use of dietary supplements and how accessible they are to adolescents and children.

People who have eating disorders often suffer related health issues such as bone loss, osteoporosis and vitamin deficiencies. In response, their doctors may prescribe dietary supplements like calcium, vitamin D and nutritional supplement shakes. But these are not the dietary supplements of concern. The concern is with supplements that promote weight loss, muscle building or both.

People with eating disorders may be attracted to dietary supplements that claim quick and pain-free weight loss or muscle gain. Additionally, dietary supplement users may struggle with an increase in compulsive exercise or other unhealthy weight control behaviors.

Diet pill and supplement use has also been associated with increased risk for developing eating disorders and disordered eating, as well as low self-esteem, depression and substance use. While dietary supplements do not solely cause eating disorders or disordered eating, they are one contributing factor that may be addressed with preventive measures and regulations.

Protein powders and other fitness supplements also have wide appeal. Research shows that girls are more at risk than boys for using weight loss supplements. But a growing problem in boys is the use of fitness supplements such as protein powder and creatine products, a compound that supplies energy to the muscles.

Use of fitness supplements sometimes signifies a preoccupation with body shape and size. For example, a 2022 study found that protein powder consumption in adolescence was associated with future use of steroids in emerging adulthood.

Protein powders make claims of building lean muscles, while creatine boasts providing energy for short-term, intense exercise.

Protein itself is not harmful at recommended doses. However, protein powders may contain unknown ingredients, such as certain toxins or extra and excessive sugar. They can also be dangerous when used in excess and to replace other foods that possess vital nutrients.

And while creatine can usually be safely used in adults, overuse can lead to health problems and is not recommended for minors. Ultimately, the impact of long-term use of these supplements, especially in adolescents, is unstudied.

Possible Solutions

One proposed regulation by researchers at Harvard University includes taxing dietary supplements whose labels tout weight loss benefits.

Another policy recommendation involves banning the sale of dietary supplements and other weight loss products to protect minors from these underregulated and potentially dangerous products.

In 2023, New York successfully passed legislation that banned the sale of these products to minors, while states including Colorado, California and Massachusetts have considered or are considering similar action.

Ultimately, medical professionals recommend that parents and caregivers encourage their children to get protein and vitamins from whole foods instead of turning to supplements and powders. They also recommend encouraging teens to focus on balanced nutrition, sleep and recovery, and a variety of resistance, strength and conditioning training.

Emily Hemendinger, LCSW, is an Assistant Professor of Psychiatry at University of Colorado Anschutz Medical Campus.

Katie Suleta is a PhD Candidate in Medicine and Health at George Washington University.

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