Should Older Adults Risk Major Surgery?

By Judith Graham, Kaiser Health News

Nearly 1 in 7 older adults die within a year of undergoing major surgery, according to an important new study that sheds much-needed light on the risks seniors face when having invasive procedures.

Especially vulnerable are older patients with probable dementia (33% die within a year) and frailty (28%), as well as those having emergency surgeries (22%). Advanced age also amplifies risk: Patients who were 90 or older were six times as likely to die than those ages 65 to 69.

The study in JAMA Surgery, published by researchers at Yale School of Medicine, addresses a notable gap in research: Though patients 65 and older undergo nearly 40% of all surgeries in the U.S., detailed national data about the outcomes of these procedures has been largely missing.

“As a field, we’ve been really remiss in not understanding long-term surgical outcomes for older adults,” said Dr. Zara Cooper, a professor of surgery at Harvard Medical School and the director of the Center for Geriatric Surgery at Brigham and Women’s Hospital in Boston.

Of particular importance is information about how many seniors die, develop disabilities, can no longer live independently, or have a significantly worsened quality of life after major surgery.

“What older patients want to know is, ‘What’s my life going to look like?’” Cooper said. “But we haven’t been able to answer with data of this quality before.”

In the new study, Dr. Thomas Gill and Yale colleagues examined claims data from traditional Medicare and survey data from the National Health and Aging Trends study spanning 2011 to 2017. (Data from private Medicare Advantage plans was not available at that time but will be included in future studies.)

Invasive procedures that take place in operating rooms with patients under general anesthesia were counted as major surgeries. Examples include procedures to replace broken hips, improve blood flow in the heart, excise cancer from the colon, remove gallbladders, fix leaky heart valves, and repair hernias, among many more.

More Complications

Older adults tend to experience more problems after surgery if they have chronic conditions such as heart or kidney disease; if they are already weak or have difficulty moving around; if their ability to care for themselves is compromised; and if they have cognitive problems, noted Gill, a professor of medicine, epidemiology, and investigative medicine at Yale.

Two years ago, Gill’s team conducted research that showed 1 in 3 older adults had not returned to their baseline level of functioning six months after major surgery. Most likely to recover were seniors who had elective surgeries for which they could prepare in advance.

In another study, published last year in the Annals of Surgery, his team found that about 1 million major surgeries occur in individuals 65 and older each year, including a significant number near the end of life. Remarkably, data documenting the extent of surgery in the older population has been lacking until now.

“This opens up all kinds of questions: Were these surgeries done for a good reason? How is appropriate surgery defined? Were the decisions to perform surgery made after eliciting the patient’s priorities and determining whether surgery would achieve them?” said Dr. Clifford Ko, a professor of surgery at UCLA School of Medicine and director of the Division of Research and Optimal Patient Care at the American College of Surgeons.

As an example of this kind of decision-making, Ko described a patient who, at 93, learned he had early-stage colon cancer on top of preexisting liver, heart, and lung disease. After an in-depth discussion and being told that the risk of poor results was high, the patient decided against invasive treatment.

“He decided he would rather take the risk of a slow-growing cancer than deal with a major operation and the risk of complications,” Ko said.

Still, most patients choose surgery. Dr. Marcia Russell, a staff surgeon at the Veterans Affairs Greater Los Angeles Healthcare System, described a 90-year-old patient who recently learned he had colon cancer during a prolonged hospital stay for pneumonia.

“We talked with him about surgery, and his goals are to live as long as possible,” said Russell. To help prepare the patient, now recovering at home, for future surgery, she recommended he undertake physical therapy and eat more high-protein foods, measures that should help him get stronger.

“He may need six to eight weeks to get ready for surgery, but he’s motivated to improve,” Russell said.

Not Enough Surgeons

The choices older Americans make about undergoing major surgery will have broad societal implications. As the 65-plus population expands, “covering surgery is going to be fiscally challenging for Medicare,” noted Dr. Robert Becher, an assistant professor of surgery at Yale and a research collaborator with Gill. Just over half of Medicare spending is devoted to inpatient and outpatient surgical care, according to a 2020 analysis.

What’s more, “nearly every surgical subspecialty is going to experience workforce shortages in the coming years,” Becher said, noting that in 2033, there will be nearly 30,000 fewer surgeons than needed to meet expected demand.

These trends make efforts to improve surgical outcomes for older adults even more critical. Yet progress has been slow. The American College of Surgeons launched a major quality improvement program in July 2019, eight months before the covid-19 pandemic hit. It requires hospitals to meet 30 standards to achieve recognized expertise in geriatric surgery. So far, fewer than 100 of the thousands of hospitals eligible are participating.

One of the most advanced systems in the country, the Center for Geriatric Surgery at Brigham and Women’s Hospital, illustrates what’s possible. There, older adults who are candidates for surgery are screened for frailty. Those judged to be frail consult with a geriatrician, undergo a thorough geriatric assessment, and meet with a nurse who will help coordinate care after discharge.

Also initiated are “geriatric-friendly” orders for post-surgery hospital care. This includes assessing older patients three times a day for delirium (an acute change in mental status that often afflicts older hospital patients), getting patients moving as soon as possible, and using non-narcotic pain relievers. “The goal is to minimize the harms of hospitalization,” said Cooper, who directs the effort.

She told me about a recent patient, whom she described as a “social woman in her early 80s who was still wearing skinny jeans and going to cocktail parties.” This woman came to the emergency room with acute diverticulitis and delirium; a geriatrician was called in before surgery to help manage her medications and sleep-wake cycle, and recommend non-pharmaceutical interventions.

With the help of family members who visited this patient in the hospital and have remained involved in her care, “she’s doing great,” Cooper said. “It’s the kind of outcome we work very hard to achieve.”

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

Stopping Rx Opioid Therapy Raises Risk of Overdose

By Pat Anson, PNN Editor

Discontinuing opioid therapy for people with chronic pain raises the risk of a patient dying from an overdose, according to a new Canadian study that calls for better guidance for healthcare providers on the risks associated with abrupt tapering.

Researchers analyzed the medical histories of over 14,000 pain patients in British Columbia who were on long term opioid therapy from 2014 to 2018 – a period when physicians in Canada and the United States were being urged to restrict opioid prescriptions due to a worsening overdose crisis. The vast majority of patients studied were either tapered to a lower dose or their opioid treatment was discontinued, regardless of whether they showed signs of opioid use disorder (OUD).  

The study findings, published in PLOS Medicine, show that discontinuing opioid therapy for pain was associated with increased overdose risk. The association was even stronger for the small minority of patients diagnosed with OUD. In total, 530 people in the study (3.8%) experienced either a fatal or non-fatal overdose, with 120 of them dying.

“Our findings underscore the need for healthcare providers and policymakers to carefully consider potential unintended adverse effects of discontinuing opioid treatment for chronic pain when developing prescribing interventions and making practice decisions,” wrote lead author Mary Clare Kennedy, PhD, a Research Scientist with the BC Centre on Substance Use and a Research Fellow at the University of British Columbia.

“Given the harms of opioid treatment discontinuation identified in this and past studies, non-consensual and abrupt discontinuation of opioid treatment for pain is contraindicated in almost all instances.”

Kennedy and her colleagues were unable to determine what substances were involved in the overdoses, but they believe some patients who had their opioid therapy stopped may have resorted to illicit fentanyl and other street drugs to manage their pain, withdrawal and other symptoms. Over 73% of the overdose deaths that occurred in British Columbia during the study period involved fentanyl.

Previous studies have also found that opioid tapering raises the risk of an overdose and mental health crisis. A study published last year in JAMA found that tapered patients were 68% more likely to be treated for opioid withdrawal, drug overdose or alcohol intoxication, and they were twice as likely to experience depression, anxiety or a suicide attempt.

The FDA warned in 2019 that rapid tapering or abrupt discontinuation of opioids could result in serious harm to patients, including withdrawal, uncontrolled pain, psychological distress and suicide.

‘Reckless Mistreatment of Patients’

Despite this growing body of evidence, forced tapering and opioid discontinuation continues – some of it caused by the heavy-handed tactics of law enforcement. Over 200 pain patients were recently cut off from opioids after their California doctor had his DEA license suspended without warning. One patient and his wife died by suicide within a week of the DEA’s action.

“Not only are we collectively causing harm, we are failing to stop causing harm even when we agree that we're causing it, which is actually worse,” says Stefan Kertesz, MD, an associate professor at the University of Alabama at Birmingham, who is leading a study of pain patient suicides.

Kertesz says regulators, insurers, journalists and law enforcement have misinterpreted overdose studies to suggest that opioid prescribing, particularly at higher doses, was the root cause of the overdose crisis.  

“Many clinicians and policymakers engaged in aggressive extrapolation that went far beyond the data. Many journalists and legal plaintiffs described the prescriptions in a way that aggravated matters. They made dose into a fetish, a performance metric, and a threshold for law enforcement,” Kertesz told PNN. “Dose based quality metrics, payor standards and legal investigation thresholds incentivize reckless mistreatment of patients.

“My ultimate question is when will agencies like the National Committee for Quality Assurance, the Office of Inspector General, and law enforcement actually come to appreciate the evidence in play?”

It took six years, but the CDC recently revised its 2016 opioid guideline to include specific language warning of the dangers of tapering or discontinuing opioids.

“Clinicians should avoid abrupt discontinuation of opioids, especially for patients receiving high dosages of opioids, should avoid dismissing patients from care, and should ensure appropriate care for patients with pain and patients with complications from opioid use,” the revised guideline states.

Steroid Injections May Worsen Knee Arthritis

By Pat Anson, PNN Editor

Two new studies are raising doubts about a commonly used treatment for knee osteoarthritis, a progressive and painful condition found in many older adults. Corticosteroid injections in the knee are often used to relieve osteoarthritis pain by reducing inflammation in the joint, with the relief lasting for days, weeks or sometimes months.

But a new long-term study by researchers at the University of California, San Francisco (UCSF) found that corticosteroid injections appear to worsen the progression of knee osteoarthritis compared to patients who received injections of hyaluronic acid, a polymer gel that acts as a lubricant and shock absorber.

UCSF researchers followed 210 patients with knee osteoarthritis (OA). Seventy of the patients received injections of either corticosteroids or hyaluronic acid, while the rest received no injections and served as a control group. MRI scans were performed on all participants at the start of the study and again two years later, focusing on the meniscus, bone marrow lesions, cartilage, joint effusion and ligaments.

“This is the first direct comparison of corticosteroid and hyaluronic acid injections using the semi-quantitative, whole organ assessment of the knee with MRI,” said Upasana Upadhyay Bharadwaj, MD, a research fellow in the Department of Radiology at UCSF.

In findings presented this week at the annual meeting of the Radiological Society of North America (RSNA), Bharadwaj reported that corticosteroid injections were significantly associated with the progression of knee OA, specifically in the lateral meniscus, lateral cartilage and medial cartilage.

Hyaluronic injections were not associated with the progression of knee OA. Patients who received hyaluronic acid showed a decreased progression of osteoarthritis, specifically in bone marrow lesions, compared to the control group. 

The findings are important because osteoarthritis is the most common form of arthritis, causing progressive joint damage and thinning of cartilage.  Over 32 million U.S. adults have knee OA, and about 10% of them receive corticosteroid or hyaluronic injections.

“While both corticosteroid and hyaluronic acid injections are reported to help with symptomatic pain relief for knee osteoarthritis, our results conclusively show that corticosteroids are associated with significant progression of knee osteoarthritis up to two years post-injection and must be administered with caution,” Bharadwaj said. “Hyaluronic acid, on the other hand, may slow down progression of knee osteoarthritis and alleviate long term effects while offering symptomatic relief.

“Knowing the long-term effects of these injections will help osteoarthritis patients and clinicians make more informed decisions for managing the disease and the pain it causes.”

In a second study presented at the RSNA’s annual meeting, researchers at the Chicago Medical School compared X-ray images of 50 patients with knee OA who received injections of corticosteroids to 50 patients who received injections of hyaluronic acid. Another 50 patients who had no injections served as a control group. Like the UCSF study, X-rays of all patients were taken at the start of the study and again two years later.

The findings mirrored those found in the first study. Patients injected with corticosteroids had significantly more osteoarthritis progression, including medial joint space narrowing, a hallmark of the disease.

“Even though imaging findings for all patients were similar at baseline, the imaging hallmarks of osteoarthritis were worse two years later in patients who received corticosteroid injections compared to patients who received hyaluronic acid injections or no treatment at all,” said Azad Darbandi, a researcher and medical student.

“The results suggest that hyaluronic acid injections should be further explored for the management of knee osteoarthritis symptoms, and that steroid injections should be utilized with more caution.”

The Mayo Clinic recommends that corticosteroid injections be limited to once every six weeks, and that knee OA patients receive injections no more than three or four times a year.

There was a third long-term study presented at the RSNA meeting that debunked another common treatment for knee OA: non-steroidal anti-inflammatory drugs (NSAIDs). UCFS researchers found that NSAIDs worsen inflammation and weaken cartilage in patients with osteoarthritis, contributing to a painful joint condition called synovitis. MRI imaging at the start of the study found joint inflammation and cartilage quality were worse in patients taking NSAIDs, and their knee joints deteriorated even more after four years. 

Spinal Cord Stimulators Fail to Reduce Opioid Use

By Pat Anson, PNN Editor

A large new study is raising questions about the long-term effectiveness of spinal cord stimulators and whether they really help patients reduce their use of opioids and other pain treatments.

Researchers at the University of California San Francisco (UCSF) School of Medicine analyzed health data for 1,260 patients who received permanent stimulators and found that — when compared to a control group — the devices did not reduce their use of opioids, epidurals, corticosteroid injections or radiofrequency ablation after two years. About a fifth of the patients experienced complications so severe the devices had to be removed or revised.

Spinal cord stimulators (SCSs) are considered an invasive treatment of last resort for people with chronic back or leg pain, because the devices have to be surgically implanted near the spine and connected to batteries placed under the skin. The implants send electrical impulses into the spine to mask pain.

About 50,000 SCSs are implanted annually in the U.S. and their use is growing – in part because of the belief they’ll reduce the need for opioids and other pain therapies.

But UCSF researchers found that SCS patients actually filled more opioid prescriptions after one year than a control group of pain patients (CMM) who did not get the devices. The use of other medications and procedures by SCS patients declined slightly after one year, but there were no significant differences between the two groups after two years.

“The lack of reduction in pharmacotherapy, epidural and facet corticosteroid injections, and radiofrequency ablations at 2 years among patients receiving SCS compared with those receiving CMM suggests that SCS was providing insufficient pain relief to forego other therapies or improve rates of depression or anxiety, as prescriptions for these drug classes did not decline,” lead author Sanket Dhruva, MD, an Assistant Professor of Medicine at UCSF, wrote in JAMA Neurology.

“Because most patients still had their permanent SCS in place at 2 years, some may receive prolonged benefit from this modality, although we were not able to identify this through reductions in opioid use or nonpharmacologic pain interventions.”

Researchers also found that the total cost of care was about $39,000 higher for SCS patients in the first year, while health costs were similar for the two groups in the second year.

‘Sobering Insights’

"The findings appear to belie the popular belief that SCS may result in reduced opioid medication usage or overall fewer physician visits in the years immediately following device implant," wrote Prasad Shirvalkar, MD, and Lawrence Poree, MD, both from the UCSF Division of Pain Medicine, in an accompanying editorial.

“Using robust propensity matching, the present study provides sobering insights that SCS does not appear to reduce chronic opioid use or the utilization of health care resources compared with CMM in the first 2 years after implant. We believe this will help mitigate excessive enthusiasm of SCS as a panacea for chronic pain syndromes and illuminate biases of SCS hype cycle that can possibly be fueled by industry-related conflicts of interest.”

Stimulators are no longer limited to patients with chronic back, neck and leg pain. Last year the FDA expanded the use of SCSs to include pain from diabetic neuropathy. Stimulators are also now being used on patients with Complex Regional Pain Syndrome (CRPS).

A 2018 study by a team of investigative journalists found that SCSs have some of the worst safety records of medical devices tracked by the FDA. A 2020 FDA review of adverse events involving stimulators found that nearly a third were reports of unsatisfactory pain relief. The review also identified nearly 500 deaths linked to the devices, along with nearly 78,000 injuries and 30,000 device malfunctions.

Cannabis Works No Better Than Placebo in Pain Studies

By Pat Anson, PNN Editor

The placebo effect is responsible for much of the pain relief experienced by participants in clinical trials of cannabis, according to new analysis that also found a “strong positive bias” in media coverage of the studies.

Researchers at the Karolinska Institute in Sweden analyzed the results of 20 placebo-controlled studies of cannabis products involving almost 1,500 people with chronic pain conditions. The cannabis products were administered as pills, sprays, oils, smoke or vapor; and most of the studies were conducted in the United States, UK or Canada.

Researchers found that many participants reported significant pain relief, but there were no differences in pain reduction between those who used cannabis products and those who used a placebo, a sham treatment that should have no effect.

“There is a distinct and clinically relevant placebo response in studies of cannabis for pain,” says Filip Gedin, PhD, a researcher in the Department of Clinical Neuroscience at Karolinska and lead author of the study published in JAMA Network Open.

Gedin and his colleagues also examined coverage the 20 studies received in the news media using Altmetric, a method of evaluating mentions in the media as either positive, negative or neutral. They did not identify the publishers of the 136 news articles that were analyzed or provide any examples of their coverage.

Researchers found that the cannabis studies received much greater media attention than other clinical studies and tended to be more positive, regardless of what the studies’ outcomes actually were. The media coverage of cannabis was so positive, in fact, that researchers wonder if it might influence findings in future studies.  

“The positive media attention and wide dissemination may uphold high expectations and shape placebo responses in future trials, which has the potential to affect the outcome of clinical trials, regulatory decisions, clinical practice, and ultimately patient access to cannabinoids for pain relief,” Gedin wrote. “We therefore consider this question to be of high importance, as the positive reporting toward cannabinoids regardless of study quality and effect size may subsequently lead to increased expectations that may ultimately influence the outcomes in clinical trials.”

The placebo effect is a well-documented but poorly understood condition in which a patient responds to a sham drug or treatment that should have no therapeutic value. A 2018 study at Northwestern University, for example, found that about half of patients who took a sugar pill they thought was an analgesic had a 30% reduction in pain – a level considered good enough for an actual painkiller.    

In another study, researchers identified some participants as “placebo responders” who are more likely to respond to a sugar pill because their brains react differently – which may explain why some patients find a medication effective and others don’t.    

Whatever the cause, researchers at the Karolinska Institute say more effort is needed to understand the placebo effect and how media coverage could make it even more potent.

“We cannot say with 100% certainty that media coverage is responsible for the high placebo response observed in our review,” Gedin wrote in an op/ed published in The Conversation.

“But given placebos were shown to be just as good as cannabis for managing pain, our results show just how important it is to think about the placebo effect and how it can be influenced by external factors – such as media coverage. For treatments, such as cannabinoids, that receive a lot of media attention, we need to be extra rigorous in our clinical trials.”

Insurers Can Cause Pain Too

By Victoria Reed, PNN Columnist

Having chronic pain or illness means that you likely take multiple medications and go to the doctor often. That means dealing with your insurance carrier to get claims filed and paid.

One of the medications that I use for my rheumatoid arthritis is quite expensive. In fact, many of the biologics commonly prescribed for RA and other autoimmune conditions are very pricey, costing thousands of dollars a month depending on insurance. Before starting a biologic, it usually needs to be pre-approved by your insurance company.

This pre-approval process can delay or even stall treatment altogether.  With RA, insurers usually require that you to try a particular biologic or disease modifying anti-rheumatic drug (DMARD) before you are approved for a more expensive one. This red tape can and does cause harm to patients as they wait for the insurance review, which can take up to three or four weeks.

During that time, doctors can treat patients with steroids or pain medications, which can help keep symptoms at bay. However, the biologics are primarily what keeps the disease from causing destructive and permanent damage.

Insurance companies are businesses, like any other, and their goal is to make money. But as they look for cheaper medication options and create red tape, the delay can literally leave you in more pain while you wait for a decision. Unfortunately, insurers control the purse strings and sometimes they seem to have more say in a patient’s care than doctors themselves.

Recently, I tried to complete a refill of my biologic medication, Actemra, through the specialty pharmacy that I use. I ordered it online and waited for the email confirmation of shipping, but after a few days I noticed that it didn’t arrive. I contacted the pharmacy’s customer service department to inquire about its status and was told that the required pre-approval had not been done by my doctor’s office: No medication would be shipped until that paperwork was completed.

I then contacted my doctor’s office to advise them of the delay and requested that they complete the required paperwork. Then I patiently waited. After nearly two weeks of being without my medication, the shipment finally arrived. Two weeks can seem like a lifetime if you’re in severe pain!

This pre-approval requirement makes no sense to me, as I’ve been taking Actemra for many years. RA is a lifelong condition that does not go away or get better on its own. Medications to control the condition are usually taken for the duration of your life. So why would my doctor need to submit pre-approval paperwork every six months?                   

Money! It’s as simple as that. Insurers look for ways to delay or avoid paying for an expensive medication..  

I’m sure I’m not the only one experiencing this. Cancer patients also must deal with their insurance company’s control over what drugs they can take to save their lives or improve their quality of life. My father lived with cancer for many years before he passed. Even towards the end of his life, the issue of what meds he was allowed to have was front and center, controlled and dictated by his insurer.

Patients can die because an insurance company refused to pay for a drug that they deemed too expensive. They prioritize profit over people’s lives and have far too much control over patient care.

If you find yourself in a battle with your insurance company over a medication that your doctor prescribed, you do have some options.  You don’t have to just accept a denial. Most insurers allow you to appeal an adverse decision, and sometimes they will change their minds after an appeal or receipt of additional supporting documentation.

You can also request that your doctor send a letter of medical necessity, which would document your need for the drug. In addition, you can request that the insurer do a physician level peer-to-peer review. This is a review that is used by insurance professionals to determine whether to uphold the denial of coverage for a particular medication or claim.

Sometimes utilizing these additional avenues will result in your medication being allowed. Still, any delay in treatment could be detrimental to your health or cause you additional pain while you wait through the appeal process. Some people may find it easier to just take a cheaper drug recommended by the insurer.

Chronic pain sufferers have enough to deal with on a daily basis and we don’t need the additional stress of engaging in a battle with our insurance carriers. Nor do we need unnecessary red tape delays, which are solely designed to save the insurer money.

Patients may not have the energy, time or knowledge to navigate the tricky tactics insurers use to pad their bottom line – which is where a patient advocate could help. Advocates can negotiate with the insurer on your behalf, and can also help you communicate with your medical providers and set up appointments. They can be close friends, family members, spouses or even someone from an organization, such as the Patient Advocate Foundation.

They say it takes a village to raise a child. We also need a village of resources to deal with chronic illness and all of the hassles that come with it.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

12 Holiday Gifts for Caregivers and the People They Care For

By Pat Anson, PNN Editor

How do you take care of yourself when you feel overwhelmed taking care of someone with a disabling chronic illness? Can an anti-inflammatory diet help prevent migraines? What is “ableism” and how does it harm the disabled? Will they ever find a cure for long covid?

The answers to these and other questions can be found in our annual holiday gift guide. If you’re a healthcare provider, caregiver or you live with chronic pain and illness -- here are 12 books that would make great gifts over the holidays. Or you can always “gift” one to yourself.

Click on the book’s cover to see price and ordering information. PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers

This timely book by Ryan Prior looks at how the Covid-19 pandemic left millions of people around the world with chronic fatigue, pain and other disabling symptoms. Many of these “long haulers” are now fighting for recognition and treatments for a puzzling new disease that could be challenging the healthcare system for decades to come.

Self-Care for Caregivers

In this handbook for caregivers, Susan White offers tips on how to maintain good physical and mental health, and how to avoid feeling angry, lonely and frustrated. Regular self-care is vital for caregivers, and means finding time to relax, rejuvenate and reconnect with others.

I’m Fine: A Practical Guide to Life with Chronic Pain

After a series of failed spinal fusions, author Toni Woodard has lived with chronic back pain for over 25 years. In this book, she describes how physical and emotional pain can impact work, relationships and mental health, and shares some simple practical lessons on how to manage pain and still enjoy life.

Raising Lazarus

The sequel to Dopesick, Beth Macy’s latest book takes a more nuanced approach to the opioid crisis, briefly acknowledging that many pain patients were harmed by the backlash against opioid medication. But Raising Lazarus primarily deals with Purdue Pharma’s corporate greed and the ongoing struggles of working-class people in Appalachia to overcome addiction and a healthcare system that doesn’t work for them.

The Migraine Relief Plan Cookbook

Author Stephanie Weaver spent years researching and interviewing migraine sufferers and healthcare providers about ways to relieve migraine pain through good nutrition. The result is this cookbook, filled with over 100 anti-inflammatory recipes for meals, snacks and drinks — all designed to help manage migraines, headaches and chronic pain.

Clinical Diagnosis and Treatment of Adhesive Arachnoiditis

It’s fair to say most doctors don’t know what adhesive arachnoiditis (AA) is, much less how treat it, which is why Dr. Forest Tennant wrote this handbook about the chronic and debilitating inflammatory disease of spinal nerves. The book will help clinicians understand the various causes of AA; how to diagnose it through lab tests, MRIs and patient symptoms; and how to treat AA through hormone therapy, good nutrition and medication.

The Nurse Practitioners’ Guide to Autoimmune Medicine

Dr. David Bilstrom wrote this book primarily to help healthcare providers diagnose and treat autoimmune disease — but patients will find it easy to understand. Chapters explore symptoms and diagnostic testing, as well as the stress, toxins, and hormone and vitamin deficiencies that cause autoimmune problems. Bilstrom takes a holistic approach to treatment, emphasizing diet and lifestyle changes over antibiotics and medication.

Wildest Hunger

The fourth in a series of paranormal crime novels by Laura Laasko, who lives with Ehlers-Danlos and Chronic Fatigue Syndrome. Laasko believes chronic illness is poorly represented in fiction, so many of her characters are given invisible illnesses like EDS to help educate readers about what it’s like to have a disability and manage its symptoms.

Year of the Tiger: An Activist’s Life

A collection of essays on living with disability by Alice Wong, founder and director of the Disability Visibility Project. Wong is a fierce critic of “ableism” — systemic discrimination and prejudice against disabled people, who are often defined and devalued by society for what they can’t do, as opposed to what they can.

Tao Calligraphy: To Heal and Rejuvenate Your Back

Dr. Master Zhi Gang Sha introduces readers to the ancient Chinese healing art of calligraphy, which professes to transform health, relationships and all aspects of life through positive energy and spirituality. This book focuses on healing back pain — and comes with QR codes that readers can scan to access videos that will help them rejuvenate their backs. Some reviewers claim just putting the book on their backs gave them pain relief!

The Hard Sell: Crime and Punishment at an Opioid Startup

Journalist Evan Hughes lays bare the inside story of Insys Therapeutics, a pharmaceutical startup that deceived insurers, corrupted doctors, and used brazen sales tactics to market Subsys, a potent and expensive fentanyl spray. The scheme made a fortune for Insys until federal investigators began looking into hundreds of overdose deaths and prosecuted company executives for drug trafficking.

The Song of Our Scars: The Untold Story of Pain

Chronic pain was a “distant, hazy concept” for Dr. Haider Warraich until he began experiencing it himself after a severe back injury. In this book, he explores the cultural and medical history of pain from ancient Greece through modern times — concluding that today’s healthcare system is broken and leaves many patients with chronic pain worse off than they were before.

These and other books and videos about living with chronic pain and illness can be found in PNN’s Suggested Reading section.

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.

How Racial and Ethnic Disparities Affect Pain

By Madora Pennington, PNN Columnist

Much of the race-related research on chronic pain in the United States only compares Black and White Americans, leaving out many other ethnic groups and demographics.  

In an attempt to broaden our understanding of who experiences pain and why, researchers culled through eight years of public surveys conducted by the CDC and the U.S. Census Bureau from 2010 to 2018. These National Health Interview Surveys gathered information from White, Black, Hispanic, Asian, Native American and multiracial Americans, giving us new insight into the role of race in pain prevalence. 

“People often tend to think about pain as a personal issue or personal struggle, but it’s really a broad social and societal issue,” says Anna Zajacova, PhD, a sociology professor at the University of Western Ontario and lead author of Beyond Black vs White, a study recently published in the journal PAIN.       

In addition to race, Zajacova and her colleagues looked at socioeconomic factors such as education, family income, home ownership and whether someone was born in the U.S. or abroad.  They found that racial disparities in pain are far larger than previously recognized, with Native Americans nearly five times more likely to have severe pain than Asian Americans. Hispanics, Whites and Blacks fell between the two extremes.

Severe Pain Prevalence

• 2.4% Asian Americans

• 5.0% Hispanics

• 6.8% Whites

• 7.6% Blacks

• 8.7% Multiracial Adults

• 11.1% Native Americans

Why is there so much disparity between races? Researchers found that Asian Americans collectively had the highest levels of education and family income, giving them a socioeconomic advantage that may explain their lower pain prevalence. Native Americans, on the other hand, tend to be the most socioeconomically disadvantaged ethnic group, which is likely a factor in their high pain prevalence.

“We really need to understand what is causing the high pain among Native American and multiracial adults, and what factors protect Asian Americans from reporting high pain on average. This question will require delving into upstream causes such as discrimination, resulting stress and corollary health impacts, as well as the role of protective factors such as community and individual resilience,” Zajacova told PNN. 

While socioeconomic factors play a role, they're not always a deciding one. Hispanics reported less severe pain than White Americans despite having fewer socioeconomic advantages, indicating that other factors may be involved.

One may be place of birth. Researchers found that immigrants reported significantly less pain than native-born adults. Since about half of Hispanic adults are foreign born, that may help explain their lower incidence of pain -- or at least a reluctance to report it. 

Researchers say we need a better understanding of the racial, ethnic, social and economic issues that contribute to chronic pain if we ever hope to manage it.   

“The biopsychosocial model of pain predicts that people marginalized by social conditions would experience more pain. Our foundational results show more nuanced patterns, in which some minoritized groups show higher pain prevalence than Whites, whereas others show lower prevalence,” Zajacova wrote.

“Given that pain is arguably the most prevalent and costly public health condition in the United States, enhanced knowledge of racial and ethnic disparities in pain is urgently needed to inform policy decisions and focus efforts at population-level prevention and intervention.” 

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. 

NSAIDs May Worsen Arthritis Inflammation

By Pat Anson, PNN Editor

Ibuprofen, naproxen and other non-steroidal anti-inflammatory drugs (NSAIDs) are often recommended as safer and more effective pain relievers than opioids. As evidence, anti-opioid activists often cite a 2018 study that found NSAIDs worked “significantly better” than opioids in reducing pain intensity for patients with osteoarthritis.

That study by VA researcher Erin Krebs, MD, is cited nearly a dozen times in the newly revised CDC opioid guideline, which recommends that patients avoid opioids and use topical or oral NSAIDs for osteoarthritis pain.

But according to a new long-term study, NSAIDs may actually worsen inflammation and weaken cartilage in patients with knee osteoarthritis, contributing to a painful joint condition called synovitis.

“The goal of our study was to analyze whether NSAID treatment influences the development or progression of synovitis and to investigate whether cartilage imaging biomarkers, which reflect changes in osteoarthritis, are impacted by NSAID treatment,” says lead author, Johanna Luitjens, MD, a postdoctoral scholar in the Department of Radiology and Biomedical Imaging at the University of California, San Francisco.

“NSAIDs are frequently used to treat pain, but it is still an open discussion of how NSAID use influences outcomes for osteoarthritis patients. In particular, the impact of NSAIDs on synovitis, or the inflammation of the membrane lining the joint, has never been analyzed using MRI-based structural biomarkers.”

Luitjens and her colleagues enrolled 277 people with moderate to severe osteoarthritis who used NSAIDs for at least one year, comparing them to a control group of 793 patients who were not treated with NSAIDs. All participants underwent an MRI of the knee at the start of the study and had another MRI four years later. 

The results showed no long-term benefits from NSAID use. The initial MRIs found joint inflammation and cartilage quality were worse in the participants taking NSAIDs, and their knee joints deteriorated even more after four years. 

“In this large group of participants, we were able to show that there were no protective mechanisms from NSAIDs in reducing inflammation or slowing down progression of osteoarthritis of the knee joint,” said Luitjens, who will present her findings next week at the annual meeting of the Radiological Society of North America (RSNA).

Luitjens says there are two possible reasons for the ineffectiveness of NSAIDs. One is that the anti-inflammatory effects of NSAIDs may not be sufficient to prevent synovitis. It’s also possible that patients with synovitis who use NSAIDs may be more physically active due to pain relief, which could have worsened their synovitis. 

In either case, Luitjens believes more evidence is needed to support the continued use of NSAIDs as a treatment for osteoarthritis.

“The use of NSAIDs for their anti-inflammatory function has been frequently propagated in patients with osteoarthritis in recent years and should be revisited, since a positive impact on joint inflammation could not be demonstrated,” she said.

The 2018 Krebs study did not look at how NSAIDs affected joint inflammation. It focused mainly on pain intensity, function and quality of life, and found few differences between opioids and NSAIDs, leading Krebs to conclude that opioids were “not superior” to NSAIDs. As my late colleague Roger Chriss pointed out, researchers also found no harmful effects in patients who took opioids for a year. There was no opioid misuse, addiction or overdoses — a detail rarely mentioned in news coverage of the study.

Osteoarthritis is a joint disorder that leads to thinning of cartilage and progressive joint damage. Knee osteoarthritis is quite common and affects over 250 million people worldwide. Nearly 40 percent of Americans over the age of 45 have some degree of knee osteoarthritis.

Why Words Can Hurt

By Mia Maysack, PNN Columnist

When my pain journey began over two decades ago, I didn’t have a “survival technique” or “coping mechanism.”  It was the ideology behind "positivity " that aligned most with me.

Any fixation on my ailments would have surely led to my death. In fact, it almost did, because anyone would start to lose it after experiencing what I and many others have: a lifelong, incurable, untreatable and unending physical discomfort.

Given the negativity that surrounds such an existence, my mission in life became to seek out the silver lining of things. I remind myself that life is a fragile gift, which helps to center and ground me. A slogan I've lived by is: I'd rather be alive and hurting than 6 feet under and feeling nothing.

But as the years passed and medical complications intensified, making the choice to strive toward an attitude of empowerment became not quite as achievable or potent as it had been. I found myself struggling in ways I wasn't sure how to manage. A life I'd rebuilt from scratch began slipping away into chronic oblivion -- yet again.

The distress reluctantly led me back into a clinical setting, where a healthcare professional shook me to my core by declaring: “You claim to be positive, but you're not. You aren’t living that." 

I was stunned! This person did not really know me. I felt overwhelmed at their audacity to make such an outrageous accusation! 

"I’m one of the most positive people I know," I told him. 

"It's not a decision you've made," was his reply.   

I left so perturbed. How dare they?

This individual knew nothing about how my body typically feels, the strength it takes to greet a new day, or to spend and wager absolutely every energy penny I possess just to make it through.

I sat with this experience for a long time, until a light bulb went on and I was faced with the realization: the provider was right!

As my disorders evolve or shift, different approaches and modalities are going to be required. This includes our attitude and mindset. Until then, I wasn’t fully embracing a more uplifting way to live. The pursuit of wellness had been solely residing inside my head, as opposed to being a place where I operated from. Positivity is a lifestyle that needs to be practiced.  

It wasn't possible for me to move forward while also clinging so tightly to my past. I have been shaped by those experiences and wouldn't be who I am without them, but they are not an adequate reflection or accurate depiction of my identity.

For example, a loved one recently shared their disinterest in associating themselves with the word “trauma.” This is somebody whose life has consisted of experiences most would consider to be the worst trauma, but they’ve chosen not to embrace that terminology. Someone else I care about refuses to identify with the word “victim.”

Personally, I attempt to steer clear of words such as “suffering” or being a “patient.” I also refrain from describing something as “negative” or “positive.” That labeling limits my overall perception and eliminates the ability to accept something as it is happening. 

The more I’m preoccupied with judgment or labeling, the less space there is for compassion and curiosity to exist. Of course, there’s nothing wrong in identifying with these phrases -- I certainly have. We’re also trying to gain acceptance from the general public, and relating to our “suffering” and “trauma” makes it more understandable. 

But the power of words and the way we refer to ourselves, interact with one another, and tell our stories, does matter. We need to use the words selectively, without letting ourselves be defined by them.       

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. Mia is the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

4 Oldies But Goodies That Relieve Back Pain

By Dr. Forest Tennant, PNN Columnist 

In our studies, we routinely review persons with adhesive arachnoiditis (AA), Ehlers-Danlos Syndrome, Tarlov cysts and Epstein Barr autoimmunity. Our bulletins have, for the last two years, focused on new discoveries such as autoimmunity, medicinal agents, spinal fluid flow exercises, MRIs and laboratory testing.  

It’s a little embarrassing, but we haven’t sufficiently emphasized that some older treatments can still bring a lot of relief.  

AA causes considerable imbalance and unusual stretches to the muscles, tendons, nerves, and joints in the back, hips and pelvis. Consequently, these tissues become sprained, strained and inflamed. Many “old-time” measures can heal these tissues and enhance comfort and mobility. Here is a short summary of four that will be around for a long time since they simply provide comfort and relief. 

1. Ultrasound: Several years ago, we started using ultrasound for AA. The theory is that it may break up adhesions. While this may or may not happen, ultrasound often provides immediate relief that can last days or weeks. Medications such as cortisone cream can also be administered during ultrasound, which boosts their effectiveness. There are now hand-held ultrasound devices that can be purchased for use at home. 

2. Epsom Salts: Foot baths with minerals are convenient and soothing. Epsom salt baths are generally believed to “pull out” or detoxify the body of excess electricity and toxins. They can be most helpful for burning feet sensations and stabbing pains in the legs. 

3. Heating Pad: Heat dilates blood vessels, which brings more oxygen to the treated area and promotes healing. Heat also relaxes muscles that may be in spasm. 

4. Transcutaneous Electrical Nerve Stimulation (TENS): Electrical currents act as an anesthetic on nerves and nerve roots. Pain in persons with AA may temporarily abate when an electric current is administered over the lower back. TENS can often break a flare.

The human body has remained unchanged for thousands of years. Remedies and treatments discovered long ago may still be applicable today. AA has many associated conditions including spinal fluid leaks, inflammation in tissues around the spine, muscle spasm, and radiating pain among others. Some “old-time” treatments may be a welcome adjunct to the 3-component medical protocols.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from an updated bulletin recently issued by the Arachnoiditis Research and Education Project. Readers interested in subscribing to the bulletins should click here.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Are Chronic Pain Patients Being Tortured?

By Carol Levy, PNN Columnist

“This is how you do torture. Just reduce their tolerance level so low, all you have to do is touch them.”

That’s what an ophthalmologist said to a medical resident as he examined my eye, triggering my trigeminal neuralgia pain.

“They burned my fingers. All they wanted was information. I would have told them anything just to stop the pain.” That’s from an episode of Law & Order.

I haven't tested my theory, but I imagine if you asked a healthy person if chronic pain was akin to torture, the answer would be a resounding, “No. Of course not.”

Torture is defined by Merriam Webster this way: 

“The infliction of intense pain (as from burning, crushing, or wounding) to punish, coerce, or afford sadistic pleasure. Something that causes agony or pain; anguish of body or mind.”

Definitionally, chronic pain patients are not being tortured, because the pain is not being inflicted as punishment, coercion or sadistically. On the other hand, we are definitely being tortured because pain does indeed cause us agony and anguish.

The injunction against torture is spelled out in the Geneva Convention and other international laws when engaging in war, but not when the war is within our own bodies.

The U.S. Congress has twice tried to deal with pain. In 2000, the Pain Relief Promotion Act was introduced. The naming of the bill sounds good, but some of its provisions are Orwellian. It called for a criminal penalties against physicians of up to 20 years in jail and revocation of their DEA license if they knowingly prescribed a controlled substance used in assisted suicide. Some physicians were concerned the bill could lead to charges if they prescribed opioids to patients who overdosed, intentionally or not.

In 2005, the Conquering Pain Act was introduced. It called for federal health officials to develop an “evidence-based practice guidelines for pain treatment” to address “the public health crisis of pain.” 

Neither Act was approved. But many of the things they called for have come to pass.  

Many have posited that under the 1990 Americans with Disabilities Act (ADA), pain patients have a right to opioids and other treatments. That unfortunately is not the case. Under the ADA, disabled people who are prescribed opioids cannot be discriminated against in employment and access to public facilities. However, the ADA does not address the prescribing decisions of doctors.

More recently, the U.S. Supreme Court ruled 9–0 in favor of two doctors who were convicted of acting as drug dealers by “overprescribing” opioids. The decision gives physicians charged with illegally prescribing opioids a fighting chance in court, because it requires prosecutors to prove that they had criminal intent. 

Where does this leave us? Will it change the legal landscape for doctors and patients? Will physicians who prescribe opioids based on their patients’ symptoms, diagnoses and suffering be less fearful? That is yet to be seen. 

Change takes time and one court ruling does not seem like much. But maybe we can look at it as a sliver of light, an opening that we can use to shine a brighter light onto us and our needs. 

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.

‘Promising Results’ for Low-Dose Naltrexone as Pain Reliever

By Pat Anson, PNN Editor

Low-dose naltrexone (LDN) continues to get more recognition from the medical community as a treatment for some types of chronic pain.

In a review of 47 studies on the off-label use of LDN, researchers at the University of Kansas Medical Center found “promising results” that naltrexone improves pain and function and reduces symptom severity in patients with chronic inflammatory or centralized pain. Most of the studies were small, however, and larger clinical trials are needed to demonstrate LDN’s efficacy.

“Though the results look promising, further, more well controlled studies are required before formal recommendations can be made,” said lead author Adam Rupp, DO, who will present his findings this week at the annual meeting of the American Society of Regional Anesthesia and Pain Medicine (ASRA) in Orlando, Florida.

Naltrexone is an inexpensive generic drug that is only approved by the Food and Drug Administration as a treatment for substance abuse. In 50mg doses, naltrexone blocks opioid receptors in the brain and decreases the desire to take opiates or alcohol.  

But in smaller doses of 5mg or less, patients with fibromyalgia, interstitial cystitis, intractable pain and other chronic conditions have found LDN to be an effective pain reliever. But because LDN is prescribed “off label” for pain, much of the evidence supporting LDN is anecdotal.

How naltrexone works is not entirely clear, but LDN supporters believe the drug helps modulate the immune system, reducing inflammation and stimulating the production of endorphins, the body's natural painkiller. LDN is not recommended for people currently taking opioid medication because it blocks opioid receptors and may cause withdrawal.

In their literature review, Rupp and his colleagues found that LDN improved physical function, sleep, mood, fatigue and quality of life in patients with Complex Regional Pain Syndrome (CRPS), fibromyalgia, diabetic neuropathy, Crohn’s disease, rheumatoid arthritis and low back pain. In patients with Crohn’s, improvements were also noted in the colon’s appearance during colonoscopies.

Side effects from LDN were minimal, consisting most commonly of vivid dreams, headaches, diarrhea and nausea. Most of the side effects resolved with continued use of LDN.

“The evidence in this review provides support for the off-label use of LDN for various chronic
inflammatory or centralized pain conditions. However, it is apparent that high-quality controlled studies focusing on administration, dosing and follow up time are needed before formal recommendations can be made,” Rupp said.

“Despite the current paucity of high-quality evidence in the literature, LDN continues to offer promising results in the management of symptoms in patients with chronic inflammatory or centralized pain conditions.”

Because LDN is not recommended as a pain treatment by the FDA or professional medical societies, patients interested in trying it often encounter doctors who refuse to prescribe it or don’t know anything about it. The LDN Research Trust includes a list of LDN-friendly doctors and pharmacies on its website.

How Inflammation Can Lead to Chronic Pain

By Drs. Prakash Nagarkatti and Mitzi Nagarkatti, University of South Carolina

When your body fights off an infection, you develop a fever. If you have arthritis, your joints will hurt. If a bee stings your hand, your hand will swell up and become stiff. These are all manifestations of inflammation occurring in the body.

We are two immunologists who study how the immune system reacts during infections, vaccination and autoimmune diseases where the body starts attacking itself.

While inflammation is commonly associated with the pain of an injury or the many diseases it can cause, it is an important part of the normal immune response. The problems arise when this normally helpful function overreacts or overstays its welcome.

Generally speaking, the term inflammation refers to all activities of the immune system that occur where the body is trying to fight off potential or real infections, clear toxic molecules or recover from physical injury. There are five classic physical signs of acute inflammation: heat, pain, redness, swelling and loss of function. Low-grade inflammation might not even produce noticeable symptoms, but the underlying cellular process is the same.

Take a bee sting, for example. The immune system is like a military unit with a wide range of tools in its arsenal. After sensing the toxins, bacteria and physical damage from the sting, the immune system deploys various types of immune cells to the site of the sting. These include T cells, B cells, macrophages and neutrophils, among other cells.

The B cells produce antibodies. Those antibodies can kill any bacteria in the wound and neutralize toxins from the sting. Macrophages and neutrophils engulf bacteria and destroy them. T cells don’t produce antibodies, but kill any virus-infected cell to prevent viral spread.

Collateral Damage

Additionally, these immune cells produce hundreds of types of molecules called cytokines – otherwise known as mediators – that help fight threats and repair harm to the body. But just like in a military attack, inflammation comes with collateral damage.

The mediators that help kill bacteria also kill some healthy cells. Other similar mediating molecules cause blood vessels to leak, leading to accumulation of fluid and influx of more immune cells.

This collateral damage is the reason you develop swelling, redness and pain around a bee sting or after getting a flu shot. Once the immune system clears an infection or foreign invader – whether the toxin in a bee sting or a chemical from the environment – different parts of the inflammatory response take over and help repair the damaged tissue.

After a few days, your body will neutralize the poison from the sting, eliminate any bacteria that got inside and heal any tissue that was harmed.

Inflammation is a double-edged sword. It is critical for fighting infections and repairing damaged tissue, but when inflammation occurs for the wrong reasons or becomes chronic, the damage it causes can be harmful.

Allergies, for example, develop when the immune system mistakenly recognizes innocuous substances – like peanuts or pollen – as dangerous. The harm can be minor, like itchy skin, or dangerous if someone’s throat closes up.

Chronic inflammation damages tissues over time and can lead to many noninfectious clinical disorders, including cardiovascular diseases, neurodegenerative disorders, obesity, diabetes and some types of cancers.

The immune system can sometimes mistake one’s own organs and tissues for invaders, leading to inflammation throughout the body or in specific areas. This self-targeted inflammation is what causes the symptoms of autoimmune diseases such as lupus and arthritis.

Another cause of chronic inflammation that researchers like us are currently studying is defects in the mechanisms that curtail inflammation after the body clears an infection.

While inflammation mostly plays out at a cellular level in the body, it is far from a simple mechanism that happens in isolation. Stress, diet and nutrition, as well as genetic and environmental factors, have all been shown to regulate inflammation in some way.

There is still a lot to be learned about what leads to harmful forms of inflammation, but a healthy diet and avoiding stress can go a long way toward helping maintain the delicate balance between a strong immune response and harmful chronic inflammation.

Prakash Nagarkatti, PhD, and Mitzi Nagarkatti, PhD, are Professors of Pathology, Microbiology and Immunology at the University of South Carolina. They receive funding from the National Science Foundation and the National Institutes of Health.

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