Researchers Find Possible Cause of Hypermobile EDS

By Crystal Lindell, PNN Columnist

Do we finally have a genetic link for hypermobile Ehlers-Danlos syndrome?

Researchers at Tulane University School of Medicine think so – and it could even point to an effective treatment that’s already available.

A variation of the MTHFR gene that causes a deficiency of folate – the natural form of vitamin B9 – could hold the key to hypermobility and a range of associated connective tissue disorders such as Ehlers-Danlos (EDS), according to preliminary findings published in the journal Heliyon.

“You’ve got millions of people that likely have this, and until now, there’s been no known cause we’ve known to treat,” said Gregory Bix, MD, director of the Tulane University Clinical Neuroscience Research Center. “It’s a big deal.”

People with the genetic variant can’t metabolize folate, which causes unmetabolized folate to accumulate in the bloodstream. The resulting folate deficiency in other parts of the body prevents key proteins from binding collagen to the extracellular matrix, which plays an important role in cell growth. This leads to more elastic connective tissue, hypermobility, and a potential cascade of associated conditions, researchers said.

The discovery could help doctors more accurately diagnose hypermobility and hypermobile EDS by looking for elevated folate levels in blood tests and the MTHFR genetic variant.

“Hypermobility is widespread and unfortunately under-recognized,” said Jacques Courseault, MD, medical director of the Tulane Fascia Institute and Treatment Center. “I’m excited about being able to treat the masses where people aren’t going their whole lives being frustrated and not getting the treatment they need."

Doctors discovered the connection between folate deficiency and the MTHFR gene by working with patients at Tulane’s Hypermobility and Ehlers-Danlos Clinic, the only clinic in the U.S. that focuses on fascia disorders. Blood tests of hypermobile patients revealed elevated levels of unmetabolized folate. Subsequent tests showed that most of those with elevated folate serum levels had the MTHFR genetic variant.

The good news is a treatment already exists. Methylated folate – folate that is already processed – is FDA-approved and widely available.

“It’s an innocuous treatment,” Bix said. “It’s not dangerous, and it’s a vitamin that can improve people’s lives. That’s the biggest thing: We know what’s going on here, and we can treat it.”

“We’ve discovered something in medicine that can help, not a small group of people, but potentially many across the world.”

— Dr. Jacques Courseault

Though more studies and clinical testing needs to be done, researchers say patients who have been treated with folate have shown improvement: less pain, less brain fog, fewer allergies and improved gastrointestinal function.

“We’ve discovered something in medicine that can help, not a small group of people, but potentially many across the world,” Courseault said. “This is real, it’s been vetted out well and clinically we’re noticing a difference.”

What Is Hypermobile EDS?

For those with hypermobile Ehlers-Danlos syndrome (EDS), the same conditions that create fragile connective tissue can cause a range of other symptoms that, on the surface, can seem unrelated: joint pain, chronic fatigue, thin tooth enamel, dizziness, digestive trouble and migraines, as well as psychiatric disorders such as anxiety and depression. Women with hypermobile EDS may also be at increased risk for endometriosis or uterine fibroids.

For years, researchers have struggled to find the cause of hypermobility and hypermobile EDS. Of the 13 subtypes of EDS, hypermobile EDS comprises more than 90 percent of cases. But until this study, hypermobile EDS was the only subtype without a known genetic correlate. As a result, symptoms have often been treated individually, without EDS being recognized as the likely cause.

Until now, hypermobility could only be diagnosed by the Beighton score, a somewhat controversial physical exam that involves measuring the bend of the spine, fingers and limbs. There has also been a historic lack of acceptance of hypermobility as a disorder that requires specialized treatment.

Many patients with hypermobile EDS never get a proper diagnosis. As a result, the number of people with hypermobility is unclear, though it could comprise more than half the world’s population.

“Hypermobility is not rare,” Courseault said. “Hypermobility is like a Ferrari that requires a lot of maintenance and the best synthetic oil. After knowing a patient's name and date of birth, I think it's prudent for clinicians to know which of these body types they have.”

Crystal Lindell is a freelance writer who lives in Illinois. After five years of unexplained rib pain, Crystal was finally diagnosed with hypermobile Ehlers-Danlos syndrome. She and her fiancé have 3 cats: Princess Dee, Basil, and Goose. She enjoys the Marvel Cinematic Universe, Taylor Swift Easter eggs, and playing the daily word game Semantle. 

Why Chronic Fatigue Is Common for Older Adults

By Judith Graham, Kaiser Health News

Nothing prepared Linda C. Johnson of Indianapolis for the fatigue that descended on her after a diagnosis of stage 4 lung cancer in early 2020.

Initially, Johnson, now 77, thought she was depressed. She could barely summon the energy to get dressed in the morning. Some days, she couldn’t get out of bed.

But as she began to get her affairs in order, Johnson realized something else was going on. However long she slept the night before, she woke up exhausted. She felt depleted, even if she didn’t do much during the day.

“People would tell me, ‘You know, you’re getting old.’ And that wasn’t helpful at all. Because then you feel there’s nothing you can do mentally or physically to deal with this,” she told me.

Fatigue is a common companion of many illnesses that beset older adults: heart disease, cancer, rheumatoid arthritis, lung disease, kidney disease, and neurological conditions like multiple sclerosis, among others. It’s one of the most common symptoms associated with chronic illness, affecting 40% to 74% of older people living with these conditions, according to a 2021 review by researchers at the University of Massachusetts.

This is more than exhaustion after an extremely busy day or a night of poor sleep. It’s a persistent whole-body feeling of having no energy, even with minimal or no exertion.

“I feel like I have a drained battery pretty much all of the time,” wrote a user named Renee in a Facebook group for people with polycythemia vera, a rare blood cancer. “It’s sort of like being a wrung-out dish rag.”

Fatigue doesn’t represent “a day when you’re tired; it’s a couple of weeks or a couple of months when you’re tired,” said Dr. Kurt Kroenke, a research scientist at the Regenstrief Institute in Indianapolis, which specializes in medical research, and a professor at Indiana University’s School of Medicine.

When he and colleagues queried nearly 3,500 older patients at a large primary care clinic in Indianapolis about bothersome symptoms, 55% listed fatigue -- second only to musculoskeletal pain (65%) and more than back pain (45%) and shortness of breath (41%).

Separately, a 2010 study in the Journal of the American Geriatrics Society estimated that 31% of people 51 and older reported being fatigued in the past week.

The impact can be profound. Fatigue is the leading reason for restricted activity in people 70 and older, according to a 2001 study by researchers at Yale. Other studies have linked fatigue with impaired mobility, limitations in people’s abilities to perform daily activities, the onset or worsening of disability, and earlier death.

‘Alarm Signal That Something Is Wrong’

What often happens is older adults with fatigue stop being active and become deconditioned, which leads to muscle loss and weakness, which heightens fatigue.

“It becomes a vicious cycle that contributes to things like depression, which can make you more fatigued,” said Dr. Jean Kutner, a professor of medicine and chief medical officer at the University of Colorado Hospital.

To stop that from happening, Johnson came up with a plan after learning her lung cancer had returned. Every morning, she set small goals for herself. One day, she’d get up and wash her face. The next, she’d take a shower. Another day, she’d go to the grocery store. After each activity, she’d rest.

In the three years since her cancer came back, Johnson’s fatigue has been constant. But “I’m functioning better,” she told me, because she’s learned how to pace herself and find things that motivate her, like teaching a virtual class to students training to be teachers and getting exercise under the supervision of a personal trainer.

When should older adults be concerned about fatigue? “If someone has been doing OK but is now feeling fatigued all the time, it’s important to get an evaluation,” said Dr. Holly Yang, a physician at Scripps Mercy Hospital in San Diego and incoming board president of the American Academy of Hospice and Palliative Medicine.

“Fatigue is an alarm signal that something is wrong with the body but it’s rarely one thing. Usually, several things need to be addressed,” said Dr. Ardeshir Hashmi, section chief of the Center for Geriatric Medicine at the Cleveland Clinic.

Among the questions physicians should ask:

• Are your thyroid levels normal?

• Are you having trouble with sleep?

• If you have underlying medical conditions, are they well controlled?

• Do you have an underlying infection?

• Are you chronically dehydrated?

• Do you have anemia, an electrolyte imbalance or low levels of testosterone?

• Are you eating enough protein?

• Have you been feeling more anxious or depressed recently?

• Are medications you’re taking contributing to fatigue?

“The medications and doses may be the same, but your body’s ability to metabolize those medications and clear them from your system may have changed,” Hashmi said, noting that such changes in the body’s metabolic activity are common as people become older.

Often No Obvious Cause

Many potential contributors to fatigue can be addressed. But much of the time, reasons for fatigue can’t be explained by an underlying medical condition.

That happened to Teresa Goodell, 64, a retired nurse who lives just outside Portland, Oregon. During a December visit to Arizona, she suddenly found herself exhausted and short of breath while on a hike, even though she was in good physical condition. At an urgent care facility, she was diagnosed with an asthma exacerbation and given steroids, but they didn’t help.

Soon, Goodell was spending hours each day in bed, overcome by profound tiredness and weakness. Even small activities wore her out. But none of the medical tests she received in Arizona and subsequently in Portland — a chest X-ray and CT scan, blood work, a cardiac stress test — showed abnormalities.

“There was no objective evidence of illness, and that makes it hard for anybody to believe you’re sick,” she told me.

Goodell started visiting long covid web sites and chat rooms for people with chronic fatigue syndrome. Today, she’s convinced she has post-viral syndrome from an infection. One of the most common symptoms of long covid is fatigue that interferes with daily life, according to the Centers for Disease Control and Prevention.

Managing Fatigue

There are several strategies for dealing with persistent fatigue. In cancer patients, “the best evidence favors physical activity such as tai chi, yoga, walking, or low-impact exercises,” said Dr. Christian Sinclair, an associate professor of palliative medicine at the University of Kansas Health System. The goal is to “gradually stretch patients’ stamina,” he said.

With long covid, however, doing too much too soon can backfire by causing “post-exertional malaise.” Pacing one’s activities is often recommended: doing only what’s most important, when one’s energy level is highest, and resting afterward. “You learn how to set realistic goals,” said Dr. Andrew Esch, senior education advisor at the Center to Advance Palliative Care.

Cognitive behavioral therapy can help older adults with fatigue learn how to adjust expectations and address intrusive thoughts such as, “I should be able to do more.” At the University of Texas MD Anderson Cancer Center, management plans for older patients with fatigue typically include strategies to address physical activity, sleep health, nutrition, emotional health, and support from family and friends.

“So much of fatigue management is about forming new habits,” said Dr. Ishwaria Subbiah, a palliative care and integrative medicine physician at MD Anderson. “It’s important to recognize that this doesn’t happen right away: It takes time.”

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

How Doctors Can Make Complex Pain Conditions Worse

By Madora Pennington, PNN Columnist

“You are teaching your child to be in pain, just like you. This is caused by anxiety, and she is learning it from you,” the emergency room doctor told Sondra Benson (not her real name) about her 15-year-old daughter.

Benson and her daughter both have Ehlers-Danlos Syndrome (EDS), a condition that causes ligaments, cartilage and other connective tissue to be fragile. Pain and fatigue are major complications of EDS, and many who have it suffer from migraines. Benson’s daughter was in the ER because she was having a hemiplegic migraine, a severe type of migraine which causes paralysis on one side of the body.

That night in the ER, the doctor’s orders were barbaric. He disregarded advice from the girl’s pediatric neurologist and refused to give her medication. Instead, he had her sit in a chair — not even in a hospital bed — and told her to “wait it out.”

Because Ehlers-Danlos is such a complex condition affecting many bodily systems, patients are often labeled as “difficult.” And when doctors mistreat them or even act punishingly towards them, it can make their health worse. For patients like the Bensons, these distressing, unproductive and hostile interactions tend to happen over and over again.

The cumulative effect on EDS patients of such negative experiences has been termed “clinician-associated traumatization” in a recently published study in the journal Qualitative Research in Health. In interviews with 26 EDS patients, 89% said that clinicians had disrespected them and treated them unprofessionally. Another 92% said clinicians had invalidated them.

Patients treated this way become reluctant to seek medical care. They have classic PTSD symptoms, such as triggers, flashbacks, irritability and hypervigilance. They’re also left with psychological wounds. They doubt themselves, become fearful of doctors, and lose trust in the healthcare system. They’re also less likely to follow orders and stick to treatment plans.

‘They Don’t Believe Me’

After being denied appropriate medical treatment in the ER, Benson’s daughter now resists going to the doctor. “What’s the point?” she says. “They don’t believe me and aren’t going to help me.”

Undoing the damage from events like these is not easy or simple. Despite having therapy for her medical trauma and being on antidepressants, the teenager still struggles with her self-esteem.

The study by researchers at Indiana University’s School of Medicine is groundbreaking for showing that trauma can come from difficult medical appointments and counterproductive treatment. Traditionally, medical trauma has been described in limited ways, such as the anguish that comes from a sudden brush with death, like an accident or cancer diagnosis.

Trauma for a medically complex patient begins early and accumulates over time. The patient struggles with mysterious health problems and is unable to get a conclusive diagnosis. This may go on for years, as the patient sees specialist after specialist with no clear answers. Doctors may treat such patients with suspicion. That makes the patient doubt themselves and weakens their desire to seek answers and treatment.

Even when they get a correct diagnosis, patients may not fare better. The repeated disrespectful, humiliating and hurtful encounters with doctors whittles away at their confidence and sense of security.

“We have found that negative encounters lead to a breakdown in the patient–provider relationship, even when experiences are primarily of inadvertent slights or… insults and invalidations,” wrote lead author Colin Halverson, PhD, an investigator at Indiana University’s Center for Bioethics. 

“Repeatedly being dismissed as ‘exaggerating’ and ‘inventing symptoms’ causes patients to lose faith in the healthcare system and in their ability to assess and advocate for their own best interests. This results in anxiety about returning to specific clinicians and avoidance of healthcare settings altogether. Ultimately, this means that patients suffering from clinician-associated traumatization experience worse – but preventable – health outcomes.” 

The EDS patients interviewed for this study thought that the clinicians who had mistreated them were clueless about the harm they caused. Many believe that insufficient education in medical school about treatments for their disease brought out this behavior. Their lack of knowledge made them behave badly and arrogantly.  

Benson has come to the same conclusions from her own experiences and those of her daughter.  

“I think the medical profession could use some empathy classes and training on chronic, long term, with no cure illnesses,” she told me. “We overvalue doctors and give them god like complexes, so when they don't know the answer, they feel threatened and act foolishly.” 

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. 

Apple Watch Can Predict Pain Levels

By Pat Anson, PNN Editor

You can monitor a lot of health conditions with an Apple Watch, everything from your heart rate and blood oxygen levels to fitness and sleep patterns. Researchers at Duke University have found the watch could also be useful in predicting pain levels in people with sickle cell disease (SCD).

In a small study recently published by JMIR Formative Research, Duke researchers used the watches to collect health data from 20 adults with SCD and used machine learning computer models to predict their pain scores.

SCD is a genetic disorder that causes red blood cells to form in a crescent or sickle shape, which creates unpredictable and painful blockages in blood vessels known as vaso-occlusive crises (VOCs). About 100,000 Americans live with SCD, primarily people of African or Hispanic descent.

Because VOC’s can lead to life-threatening infections, strokes and organ failure, knowing their intensity could lead to earlier treatment and save lives. VOCs are typically treated with pain medication and intravenous saline solutions to promote hydration.

The sickle cell patients in the study were all admitted Duke University’s SCD Day Hospital while experiencing a VOC and provided with an Apple Watch Series 3, which was worn for the duration of their visit. Data collected from the watch included their heart rate, heart rate variability and calorie consumption, which were then matched with pain scores and vital signs collected from their electronic medical records.

In all, a total of 15,683 data points were collected, which were then analyzed using three different machine learning techniques. The best performing one was the “random forest” model, which predicted pain scores with an accuracy of nearly 85 percent.

“The strong performance of the model in all metrics validates feasibility and the ability to use data collected from a noninvasive device, the Apple Watch, to predict the pain scores during VOCs,” wrote lead author Rebecca Sofia Stojancic, who works in the Sickle Cell Comprehensive Care Unit at Duke University Hospital. “It is a novel and feasible approach and presents a low-cost method that could benefit clinicians and individuals with sickle cell disease in the treatment of VOCs.”

The idea of using mobile health apps and wearable technology to predict pain scores isn’t a new one. The idea was first explored in 2019 by Duke researchers using a Microsoft Band 2 to collect data from sickle cell patients.

“The Microsoft Band 2 allowed easy collection of objective, physiologic markers during an acute pain crisis in adults with SCD. Features can be extracted from these data signals and matched with pain scores. Machine learning models can then use these features to feasibly predict patient pain scores,” researchers reported.

Could wearable devices be used someday to predict pain flares from other chronic health conditions? A handful of clinical studies have explored the use of smartphones, Fitbits and other devices to predict migraines and hospital readmissions for high-risk patients, but no results have been posted so far.

What Young People Learn to Think About Chronic Pain

By Pat Anson, PNN Editor

Did your chronic pain start during childhood?  If so, what did you think or do about it?

Did your body change when you felt pain for a long time? What is the most important thing you learned about pain? Why do you think humans have a biological system that creates pain?

Those are some of the questions an international team of researchers asked a group of 17 young adults in the U.S. and Canada who had chronic pain as children (aged 11-17 years). Participants had a range of pain conditions, such as headaches and musculoskeletal pain, and experienced pain for at least six months.

Their answers, recently published in the European Journal of Pain, provide insights into what young people think about pain and how they learned to adapt to it. Researchers say they could help debunk myths about pain and improve pain management for adults, as well as children.

“If we can identify what young people think about pain, we can figure out which beliefs are helpful, and which are not. Then we can use this knowledge to make better pain education for young people, so they understand why to engage in best-practice treatments,” says lead author Hayley Leake, PhD, a  physiotherapist and researcher at the University of South Australia. “It is important to challenge beliefs about pain that don’t align with modern pain science.”

In their interviews, Leake and her colleagues found that young people tend to think about chronic pain in one of four ways:

1. Something is wrong with their body

2. Caused by an injury that has not healed

3. Nerves ‘firing’ when they should not

4. An overactive stress system

The 17 young adults have some sophisticated and nuanced views about chronic pain. Far from being meaningless or “all in their heads,” many view pain as a sign of an undiscovered problem in the body.

“I think when we have pain in other areas, like the back, and it's there for no reason, I really do wonder if there's something going on in the body that's not good that hasn't been detected. Like soreness of a neck should be if the person slept wrong that blood flow will get cut off, sometimes that just happens. But if someone is often sore, then I think something is not quite right in the body.”   

‘No One Really Cared Enough’

Even as children, participants experienced stigma and disbelief – sometimes from their own families – when their pain didn’t respond to treatment. This was perceived by the young person as a lack of empathy, which could have bad implications for family relationships.

“I became hyper aware of my pain and drove my family crazy anytime I had pain because I wanted to know what was causing it. Then I figured out that that was going to be exhausting, and no one really cared enough so I stopped.“

Sadly, some learned at an early age that that their injuries may never completely heal and could become permanent. They had to learn how to live with it.

“Instead of trying to heal it, try to cope with it. Because, like, when I was younger everyone would say, ‘Oh like you're going to be over your pain before you're eighteen, like, this is only temporary.’ I wish I would have prepared myself more knowing that I would have it long term because that's my reality now.”

Many became aware that their nervous systems were “on the fritz” and sending out the wrong signals. This was described as “useless pain” or nerves that “stop working so well.”

“I'm pretty sure [nerves] get inflamed and confused and so like start firing signals that aren't actually there so it doesn't know what's happening and the body gets confused and doesn't know how to fix anything.”

“Basically, the way I explain my stomach (pain) to people is sort of like a peanut allergy in the sense that the wires are crossed a bit and it overreacts to things.”

Stress Makes Pain Worse

Some learned about the role of stress, and how emotional pain can make physical pain worse.

“Learning about pain and how the body can become stressed, and stress can lead to pain, has really helped me … When I was younger, I didn't understand how stress causes pain. I understand how stress causes pain now, and how stress can cause pain from like ‘fight or flight’ mode or adrenalin in your body.”

“I noticed that when I am in more stressful situations or more focused on the pain it feels like ten times worse and there is just nothing I can do about it. So by being in a stressful situation I feel tense. I am angry, uptight, and it's not doing much for my physical pain because I'm tensing up which is causing my muscles to hurt.”

Understanding the link between stress and pain helped some learn how to manage their pain. They use psychological techniques to reduce stress, such as relaxation and deep breathing exercises.

“I feel like I have a better understanding of what causes the pain… I'm more efficient about the way that I treat it and have a better grasp of not everything requires medication now that I understand exactly kind of what is going on about the pain. I just know that I don't always have to take something. I can breathe through it because it can be tied to emotions or your hormones and stuff like that.”

The interviews with 17 young people are part of a larger, six-year study of 229 children with chronic pain who were followed into adulthood. Of the original group, over 82% still report having chronic pain as adults.

Researchers are now developing a toolkit to spread awareness about childhood chronic pain to share on social media and in schools.

“Educating teenagers and young adults – as well as their parents and caregivers – about chronic pain and talking to them in the words and phrases they use and understand, is a first step to change,” says Leake. “We know when adults with chronic pain learn about pain, they improve more than those who don’t learn about pain, and that they find pain education valuable.”

Is Your Personal Health Data For Sale?

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

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

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

GoodRx Settlement

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

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

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

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

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

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

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

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

Most Americans Losing Sleep Due to Pain

By Pat Anson, PNN Editor

Does pain keep you awake at night? A new survey found that a surprising number of Americans are unable to get a full night’s sleep because of “painsomnia.”

Almost 98% of U.S. adults surveyed by the Sleep Foundation say they experience pain at least one night a week. About 85% said pain costs them at least two hours of sleep each night, with the average respondent losing six hours of sleep per week.  

Back pain was the most common reason for painsomnia (56%), followed by neck pain (41%), head pain (32%) and knee pain (29%).

“Pain does not have to be extreme to keep us awake,” says Alex Dimitriu, MD, founder of Menlo Park Psychiatry and Sleep Medicine, and a member of the Sleep Foundation's medical-review board. “Even milder forms of pain can result in varying degrees of insomnia, resulting in trouble falling or staying asleep.”

Adults who live with pain average just 6.7 hours of sleep per night, below the recommended 7 to 9 hours. A recent meta-analysis of 31 studies found that sleep loss increases our perception of pain and creates a vicious cycle. Poor sleep leads to more pain and vice versa.

“When you can’t sleep well due to pain, this leads to more pain,” said Medhat Mikhael, MD, a pain management specialist and medical director of the Spine Health Center at Orange Coast Medical Center in Fountain Valley, CA. “You also become anxious about not sleeping enough, so you don’t sleep. Then you’re fatigued, so you feel a lot more pain.”

When asked to rate their pain on a zero to ten scale, 73% of respondents with chronic pain said their nightly pain was at level 5 or higher. Over half (57%) said they wake up at least three times during the night, and 41% say they wake up earlier than they’d like.  Experts say fitful sleeping is less restorative and heightens pain sensitivity.

“Sleep is as much about quality as it is about quantity,” Dimitriu says. “Falling asleep too late can push circadian rhythms into a delayed sleep-phase cycle. And waking too early can result in an advanced sleep phase cycle, where you get tired too early in the evening.”

What are people doing about their poor sleep? Over half of respondents (56%) who lose sleep to pain have taken sleep aids in the past month. Melatonin was the most popular (49%), followed by Benadryl (diphenhydramine) (23%).

A surprising number said connecting with others in pain support groups helps them sleep. Although only 1 in 5 pain sufferers say they’ve participated in support groups, 91% of those who did say interacting with other painsomniacs helped them learn how to better manage, understand or improve their sleep.

This Sleep Foundation survey was conducted online in June, 2022. Results are from 1,250 participants aged 18 and older who lived in the United States.

Widely Used Red Food Dye Linked to IBD

By Pat Anson, PNN Editor

Allura Red is one of the most widely used artificial food dyes in the world. Also known as “Red Dye 40,” the dark red coloring is added to sodas, candies, breakfast cereals, condiments and dozens of other food products to make them more appetizing.

Over the years, Allura Red has been linked to a variety of different health conditions, including attention deficit hyperactivity disorder (ADHD) in children. Now there is emerging evidence that Allura Red may also trigger inflammatory bowel diseases (IBDs) such as Crohn’s and ulcerative colitis.

Researchers at McMaster University in Ontario, Canada exposed laboratory mice to Allura Red for 12 weeks — at about the same levels humans might consume — and found that it caused chronic inflammation in their gastrointestinal tracts and raised levels of serotonin, a hormone that affects mood and digestion.

“This study demonstrates significant harmful effects of Allura Red on gut health and identifies gut serotonin as a critical factor mediating these effects. These findings have important implication in the prevention and management of gut inflammation,” McMaster researcher Waliul Khan, PhD, said in a statement.

“What we have found is striking and alarming, as this common synthetic food dye is a possible dietary trigger for IBDs. This research is a significant advance in alerting the public on the potential harms of food dyes that we consume daily.”

Although Allura Red and eight other synthetic food dyes – all derived from petroleum -- are considered “safe for the general population” by the FDA, there have been relatively few studies of their effect on human health. Some experts believe the dyes disrupt the absorption of key minerals like zinc and iron, causing hyperactivity, allergic reactions and gut inflammation.

STRAWBERRY SODA CONTAINING ALLURA RED DYE

Recent research has helped establish the importance of gut health, and that bacteria can have profound effects – both harmful and beneficial -- on our immune and gastrointestinal systems. A 2022 study, for example, found evidence that a particular strain of bacteria causes abdominal pain, cramps, bloating, gas and diarrhea – symptoms common to IBD. A 2019 study linked gut bacteria to fibromyalgia.

Western diets that have a lot of processed food rich in fat, meat and sugar have also been linked to gut inflammation. Processed foods tend to have a lot of Allura Red and other chemical additives, and Khan believes they warrant further study.

“The literature suggests that the consumption of Allura Red also affects certain allergies, immune disorders and behavioural problems in children, such as attention deficit hyperactivity disorder,” said Khan, a professor of Pathology and Molecular Medicine at McMaster and principal investigator at the Farncombe Family Digestive Health Research Institute.

Khan and his colleagues published their findings in Nature Communications. Their study was funded by the Canadian Institutes of Health Research.

Persistent Pain Worsens Physical Function and Mental Health in Seniors

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

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

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

Hypermobility Linked to Depression and Anxiety at Young Age

By Madora Pennington, PNN Columnist

The teenage years are difficult for almost everyone, but even more so for teens with hypermobile joints, a condition known as hypermobility. Their joints have an excess range of motion, and some can literally bend their arms, legs and fingers backward.

Jess — who asked that we not use her last name — had always noticed she was extremely flexible. By the time she was a teenager, Jess had crushing fatigue and anxiety. She obsessed over her grades like a perfectionist and developed an eating disorder. Her terrible anxiety caused her to self-medicate, as she did all she could to keep up with her peers.

Eventually, it all became too much. Jess had to leave high school and finish her degree through proficiency testing. Not until age 19 was she finally diagnosed with Ehlers-Danlos Syndrome (EDS), a disease that weakens connective tissue in the joints and causes hypermobility.

Hypermobility in early life is normal. All babies and children are highly flexible, which most eventually outgrow. But for some children, hypermobility is permanent. Excessively loose joints are a feature common to many inherited disorders like EDS, wherein the body cannot make connective tissue that is stable and strong. In essence, the "glue" holding their bodies together is flawed and weak.

Extremely flexible people like Jess may be seen by their peers as having interesting or cool skills, like doing contortionist tricks or excelling in yoga. But hypermobility is a severe health problem that can lead to mental health issues.

"Hypermobility affects one in four people in the UK. Like other musculoskeletal conditions, it can have a profound and far-reaching impact on life, causing daily pain, fatigue and often disrupted sleep," says Dr. Neha Issar-Brown, Director of Research and Health Intelligence at the UK-based charity Versus Arthritis. "Previous studies in adults have shown that you are more likely to suffer from anxiety if you have hypermobility, and that the daily toll of painful symptoms can lead to depression.”

A new study in BMJ Open found a similar link in adolescents. To see if there is an association between hypermobility, anxiety and depression in late adolescence, researchers at Brighton and Sussex Medical School evaluated over 14,000 teens with joint hypermobility.

At age 14, their hypermobility was scored, which is done by measuring the degree to which various joints hyperextend or bend past the point where they should. Then, at age 18, the participants answered surveys about depression and anxiety. Pain, a common complication of hypermobility, was also taken into account. The participants' heart rates were also studied.

"Many psychiatric problems, including depression and anxiety, start before the age of 25. It is therefore important to identify the factors that may increase the risk for these disorders. Being aware of the link between hypermobility and depression and anxiety means that we can work on developing appropriate and effective treatments," said lead author Dr. Jessica Eccles, Department of Neuroscience, Brighton and Sussex Medical School.

Eccles and her colleagues found that young people with joint hypermobility were more likely to have depression and anxiety, and their psychiatric symptoms were also more severe. Joint hypermobility was more common in females than males, but it was only among males that hypermobility increased the risk for depression.

"This study has highlighted the need for more targeted and bespoke support for hypermobile teenagers, particularly girls," says Lea Milligan, CEO of the UK-based advocacy organization MK Mental Health Research. "The findings don't just show the need for support for this group of individuals, but also demonstrate the importance of research that takes a whole mind, body brain approach to health and uses longitudinal studies to improve our understanding of which demographics are at higher risk of depression and anxiety.”

Why hypermobile people suffer from more psychopathologies may be due to a dysregulation of the nervous system called dysautonomia, which is very common among those with loose joints. Their poorly regulated nervous systems cause a rapid increase in heart rate when they rise to stand, when it should remain constant. This inability of the body to maintain a smooth and consistent heart rate when posture changes has also been associated with anxiety.

Rapid heart rates and poor cardiovascular regulation also occur when someone has anxiety and depression. The higher a person's resting heart rate, the more psychological symptoms tend to follow. Those with depression tend to have different skin temperatures, breathing rates, and a lower variability in heart rate.

Complaints from UK parents with hypermobile children motivated this study. They encountered healthcare providers that were ignorant of the complications and challenges of hypermobility and dismissed their concerns. More awareness and education are needed to help these families, and this study is a step in that direction.

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. 

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.

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. 

‘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.

Restoring Blood Flow Reduces Pain in Patients with Peripheral Artery Disease

By Pat Anson, PNN Editor

Restoring blood flow to the legs significantly reduces pain and improves quality of life for people with peripheral artery disease (PAD), according to new research presented this week at the American Heart Association’s Scientific Sessions in Chicago.

Over 200 million people worldwide suffer from PAD -- a narrowing of peripheral arteries throughout the body that can cause severe leg pain, cramping and fatigue after a short walk or even just climbing a flight of stairs. In one out of ten people with PAD, the lack of blood flow can lead to chronic limb-threatening ischemia (CLTI), where people experience pain even when resting. Left untreated, tissue damage in the leg may result in amputation.

To restore blood flow, a common treatment for PAD is leg bypass surgery, in which a passage around the blocked arteries is created by using another vein from the leg of a patient. A less invasive approach is angioplasty, in which a balloon-tipped catheter is inserted into the blocked artery to widen it. A stent is then often placed to keep the artery open.

Few studies have compared the effectiveness of bypass surgery to angioplasty and stenting, which are known as “endovascular” procedures.

“The large body of high-quality evidence that guides treatment of heart disease and stroke does not exist for PAD, and until now, there has been almost no data to inform the care of CLTI patients,” says lead author Matthew Menard, MD, an associate professor of surgery at Harvard Medical School, and co-director of endovascular surgery at Brigham and Women’s Hospital.

In the first large-scale randomized controlled study of its kind, Menard and his colleagues enrolled 1,830 people with severe PAD at 150 centers in the U.S., Canada, Italy, Finland and New Zealand. Participants were surveyed at the beginning of the study about their quality of life and at several follow-up visits for 4 years after their surgery or procedure. The surveys asked about pain, PAD symptoms and severity, physical activity and mental health.

Pain levels were high and quality-of-life scores were low at the beginning of the study, reflecting the poor health and well-being of many patients with CLTI. But after surgery or an endovascular procedure, pain scores decreased significantly and quality-of-life scores improved for all participants.

“Improvement in health-related quality-of-life measures regardless of the type of procedure is very encouraging and highlights the importance of timely restoration of blood flow to the leg and foot,” said Menard.

Menard noted there were some differences initially between the two study groups favoring endovascular procedures, possibly reflecting the longer recovery time for a surgical bypass. But the differences were not “clinically meaningful” and leveled out over time.

“The quality-of-life data are a nice complement to the clinical results and suggest that both revascularization strategies may effectively improve a patient’s quality of life. So, while there is still much work to be done, and quality-of-life measures have not always been the focus in past PAD research, this is an important step forward,” he said.

PAD patients who don’t have bypass surgery or endovascular procedures may want to continue walking despite the pain and discomfort, according to a recent study. Researchers at Northwestern University’s Feinberg School of Medicine found that elderly PAD patients who exercised 5 days a week walked at a faster pace and performed better on physical performance tests than non-walkers.

Between 8 and 10 million people in the United States have PAD. The condition disproportionately affects African-Americans, Native Americans and those with low socioeconomic status.

Study Finds Harmful Effects of Chronic Pain Persist Throughout Life

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

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