Millions Disabled by Chronic Pain, Anxiety and Depression

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

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

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

Chronic Pain Riskier Than Smoking for Heart Attack Survivors

By Pat Anson, PNN Editor

People recovering from a heart attack who have moderate or severe pain are significantly more likely to die -- even when the pain is not associated with heart disease – according to a large new study that highlights the deadly toll that chronic pain can have on health.

“Pain causes significant loss of function and may lead to disability, all of which contribute to major, global public health issues. Research indicates that pain is linked to higher risk of cardiovascular disease and overall death; however, the impact of pain on death after a heart attack has not yet been examined in large studies,” said lead author Linda Vixner, PhD, an associate professor of medical science at Dalarna University in Sweden.

Vixner and her colleagues analyzed 8.5 years of health data for over 18,300 Swedish adults who had a myocardial infarction (MI) – more commonly known as a heart attack. Their findings, published in the Journal of the American Heart Association, show that pain was common a year after the heart attack, with nearly 45% of participants reporting moderate or extreme pain. About two-thirds of them had persistent or long-term pain.

The effect of pain on mortality was even more pronounced than smoking, a well-known risk factor for cardiovascular disease, cancer and other health problems. Heart attack survivors who reported extreme pain were more than twice as likely to die from any cause during the study period, compared to those who had no pain. Those with moderate pain were 35% more likely to die.

Researchers say the study demonstrates that chronic pain is a major risk factor for health providers to consider when treating a patient recovering from a heart attack.

“Pain severity seems to be an important factor, because mortality among patients with chronic pain is higher than in the general population, especially when chronic pain is severe. In addition, we found that patients with extreme pain were less physically active,” they reported.

“Pain and cardiovascular diseases share many lifestyle‐related risk factors and risk factors related to socioeconomic status, which could be one explanation as to why mortality among patients with pain 1 year after MI was significantly higher than mortality in patients without pain. Pharmaceuticals commonly used in pain treatment (both opioids and nonsteroidal anti‐inflammatory agents) are associated with increased cardiovascular risk, which could also be a part of the explanation.”

Previous studies have found that long-term use of non-steroidal anti-inflammatory drugs (NSAIDs) significantly raises the risk of a heart attack or stroke. The FDA says people with a history of cardiovascular disease are at the greatest risk. But the risk is also present for those who don't have heart problems.

A 2016 Vanderbilt University study found that long-term opioid users are more likely to die from cardiovascular and respiratory problems than they are from accidental overdoses.

Can Risk Scores Help Predict if Chronic Pain Will Spread?

By Pat Anson, PNN Editor

The term “biopsychosocial” is a bit of a dirty word in the pain community. Many patients feel that studying the biological, psychological and social factors involved in chronic pain trivializes their physical pain by linking it to anxiety, fatigue, trauma and other stressful life experiences – suggesting the pain is “all in your head.”

But researchers at McGill University in Montreal think biopsychosocial risk factors play a key role in determining the severity and spread of chronic pain to other parts of the body. And that could lead to better ways of treating and preventing pain.   

"By identifying common biopsychosocial factors associated with chronic pain, health care professionals could better personalize treatment plans and improve patient outcomes," said co-author Etienne Vachon-Presseau, PhD, Assistant Professor in the Faculty of Dental Medicine and Oral Health Sciences at McGill University.

Using data from the UK Biobank, a large biomedical database in the United Kingdom, McGill researchers analyzed nine years of health data for nearly 50,000 people who reported a common pain condition such as osteoarthritis, migraine, fibromyalgia and spinal disc degeneration. By the end of the study period, nearly half of the participants (44%) reported their pain had spread to more than one body site.

Why did some people develop chronic overlapping pain conditions (COPCs), while others did not?

To find out, the research team dug deeper into the data, using machine learning algorithms to study 99 different physical, psychological, demographic and sociological factors about the participants, such as their education, mental health, substance use, and socioeconomic status.

The study findings, published in Nature Medicine, identified the biggest risk factors associated with COPC: depression/anxiety, insomnia, neuroticism (feeling fed-up), fatigue, stressful life events, and a body mass index (BMI) above 30.

“Our findings suggest that the biopsychosocial model not only shapes pain experience and maintenance, but also predisposes the development of new pain sites, a phenomenon we refer to as the ‘spreading’ of pain sites,” researchers reported. “Furthermore, we found that the pain site co-occurrence was not random, with a strong dependence between proximal pain sites, shown from either acute or chronic pain sites and from correlations between pain intensity ratings. Thus, biopsychosocial risk scores developed for headache will also moderately predict knee pain and vice versa.”

Based on those findings, the McGill team developed a pain risk score that utilizes six simple questions:

Risk of Pain Spreading Screen

1. Do you have difficulty falling asleep at night or do you wake up in the middle of the night?

2. Do you often feel ‘fed-up’?

3. Over the past 2 weeks, how often have you felt tired or had little energy?

4. Have you ever seen a GP or psychiatrist for nerves, anxiety, tension or depression?

5. In the last two years, have you experienced a serious illness, assault, death of a spouse/partner or close relative, separation/divorce, or financial difficulties?

6. Is your BMI over 30?

McGill researchers say their questionnaire will help providers quickly assess the risk of a pain patient developing more severe pain and how the pain might spread across their body.

“Our model predicted chronic pain spreading across multiple body sites in nearly 50,000 out-of-sample individuals,” researchers said. “We showed that high sensitivity and specificity could still be obtained for certain chronic pain conditions using only six questions. The ability to predict chronic pain, particularly COPCs and its severe forms, with minimal effort has the potential to benefit both research and clinical practice.”

Arthritis Pain Varies Widely Across States

By Pat Anson, PNN Editor

People living in West Virginia are three times more likely to have moderate or severe joint pain from arthritis than those in Minnesota, according to a comprehensive new study that highlights how disparities in education and access to social services contribute to chronic pain.

“Very little research has examined the geography of chronic pain, and virtually none has examined the role of state-level policies in shaping pain prevalence,” says co-author Hanna Grol-Prokopczyk, PhD, an associate professor of sociology at the University of Buffalo. “We were excited to identify state characteristics that reduce residents’ risk of pain.”

Grol-Prokopczyk and her colleagues looked at data for over 400,000 adults who participated in the 2017 Behavioral Risk Factor Surveillance System, along with data from all 50 states on social assistance and anti-poverty programs such as the Earned Income Tax Credit, Medicaid and Supplemental Nutrition Assistance Program (SNAP), more commonly known as food stamps.

Their findings, published in the journal PAIN,  show the risk of joint pain was significantly higher in states in Appalachia, the Mississippi Valley and the South, compared to states in the Upper Midwest and West.

Nearly one in four adults in West Virginia (23.1%), Alabama (21.6%) and Arkansas (21.4%) had moderate to severe joint pain. States with the lowest risk of joint pain are Minnesota (6.9%), Hawaii (7.5%) and Utah (7.7%).

SOURCE: PAIN

Digging deeper into the data, researchers found that educational disparities are also associated with pain frequency. People who did not complete high school in West Virginia (31.1%), Arkansas (29.7%) and Alabama (28.3%) were far more likely to have joint pain compared to those with bachelor degrees in California (8.8%), Nevada (9.8%) and Utah (10.1%).

People with less education are more likely to have blue-collar jobs requiring manual labor that may contribute to joint pain. They also have lower incomes and less access to healthcare.

“Education can function as a ‘personal firewall’ that protects more highly educated people from undesirable state-level contexts, while increasing the vulnerability of less educated individuals,” said first author Rui Huang, a sociology PhD student in the UB College of Arts and Sciences.

Researchers also found that states with higher levels of SNAP benefits, social support and community health services had lower levels of pain frequency.

“The increase in the generosity of SNAP benefits could potentially alleviate pain by promoting healthier eating habits and alleviating the life stress associated with food insecurity,” says Huang. “Social factors such as conflict, isolation and devaluation are also among the ‘social threats’ that can lead to physical reactions such as inflammation and immune system changes.”

Previous studies at the University of Buffalo have found that gender, poverty and education play a role in pain frequency and that the overall prevalence of pain is increasing in the United States, affecting virtually every age group, sex, ethnicity and demographic.

Every Brain Has Unique ‘Pain Fingerprint’

By Pat Anson, PNN Editor

They say no two fingerprints or snowflakes are alike. The same may also be true about pain perception.

UK researchers say brain waves -- called gamma oscillations – vary so much from person to person they could be called “pain fingerprints.” That may explain why there is such wide variability in how we feel pain and respond to it.

Scientists at the University of Essex subjected 70 people to brief touch and pain stimulation with a laser, while their gamma oscillations were monitored with an electroencephalogram (EEG), a test that measures electrical activity in the brain using small electrodes attached to the scalp.

The study findings, published in the Journal of Neurophysiology, showed that every participant’s gamma waves had distinct patterns when stimulated, with major differences in the timing, frequency and location of the gamma oscillations. Some had no gamma response when subjected to pain, while others had a large response. 

“Not only, for the first time, can we pinpoint the extreme variability in the gamma response across individuals, but we also show that the individual response pattern is stable across time,” said lead author Elia Valentini, PhD, a Senior Lecturer in the Department of Psychology and Centre for Brain Science, University of Essex. 

“This pattern of group variability and individual stability may apply to other brain responses, and characterizing it may allow us to identify individual pain fingerprints in the activity of the brain.” 

JOURNAL OF NEUROPHYSIOLOGY

Previous studies of how pain changes gamma waves focused on group data, while overlooking individual differences. As a result, some scan results were discarded as background noise, leading to false conclusions.  

The new study found that every participant’s gamma waves were highly individual and “remarkably stable.” It’s not clear why there is such variation between individuals, but Valentini hopes his study will change the way gamma oscillations are measured in future research. 

“I think we need to go back to square one because past findings on the relationship between pain and gamma oscillations do not represent all the participants,” he said. “Our results indicate that current EEG measures do not reflect the complex reality of the diverse individual response patterns to brief pain and touch experiences.”

New research could lead to a better understanding of how we perceive and manage pain. Instead of one-size-fits-all therapies, future treatments could be tailored to our individual “pain fingerprints.”

Mood Disorders May Be Early Sign of Chronic Fatigue

By Pat Anson, PNN Editor

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

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

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

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

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

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

PLOS ONE

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

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

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

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

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

Regular Exercise Boosts Pain Tolerance

By Pat Anson, PNN Editor

People who remain physically active over a long period have much greater pain tolerance than those who are sedentary and don’t get much exercise, according to a large new study in Norway.

While exercise has long been touted as a way to ease or even prevent chronic pain, this particular study falls short in actually proving it, which we’ll get to later.

Researchers at University Hospital of North Norway analyzed data from 10,732 adults who participated in a large health survey -- the Tromsø Study --- that is conducted periodically in Norway. The researchers used data from two rounds of the study that were conducted seven years apart, one in 2007-2008 and the other in 2015-2016.

Most of the participants (79%) said they were either sedentary or engaged in only light exercise, while the remainder reported moderate or vigorous activity. About a third of the participants (32%) said they had chronic pain,

Pain tolerance was assessed by how long they could keep a hand immersed in cold water that was a few degrees above freezing (3 degrees Celsius or 37.4 degrees Fahrenheit).

The study findings, published in the journal PLOS ONE, showed that participants who reported vigorous physical activity in either round had significantly more pain tolerance than the couch potatoes who maintained a sedentary lifestyle in both rounds.

The good news for couch potatoes is that pain tolerance can be improved. As the chart below demonstrates, people who boosted their physical activity (PA) over time were able to keep their hands in cold water for longer periods, suggesting they have more pain tolerance.

source: plos one

“In summary, these findings suggest that becoming or remaining active at a level above being sedentary, or making a positive change in activity level, over time is associated with higher pain tolerance as opposed to being sedentary or making a negative change,” researchers reported. “Whatever you do, the most important thing is that you do something!”

Interestingly, having chronic pain did not influence the findings one way or another. Researchers found that chronic pain “does not significantly interfere” with the relationship between physical activity and pain tolerance. However, they were hesitant to draw a conclusion from that, saying the findings “might look different” if pain conditions were broken down into different diagnostic groups, instead of under one broad term under the label “chronic pain.”      

Even moderate physical activity is known to stimulate the production of endocannabinoids – cannabis-like substances naturally produced by the body -- which can relieve pain and inflammation. Regular exercise can also help us lose weight, reduce the risk of heart disease, and boost overall health.  

Colostrum: A Regenerative Hormone for Arachnoiditis

By Dr. Forest Tennant, PNN Columnist

Persons with adhesive arachnoiditis (AA) and other severe painful conditions such as Ehlers-Danlos syndrome (EDS) have multiple tissues that become damaged, painful and dysfunctional.

Healing those damaged tissues and reversing the pain and neurologic impairments will require regenerative hormones. This is in contrast to other types of hormones that control inflammation (cortisone), metabolism (thyroid) or sexual functions (estradiol).

The human body makes some natural regenerative hormones, and they are now available for clinical use. Our first realization of their value in treating AA was with human chorionic gonadotropin (HCG). Other regenerative hormones that can be used to treat AA include colostrum, pregnenolone, dehydroepiandrosterone (DHEA), nandrolone, and human growth hormone (HGH). We have used all of these and believe that persons with AA should use at least one of them. But our first choice is colostrum.

Colostrum is in mother’s milk produced during the first few days after birth. It contains high levels of tissue growth factors, anti-inflammatories, pain relievers, and anti-infectious agents. Its natural purpose is to allow the newborn baby to initiate growth, protect against infection, and provide pain relief from the trauma of birth.

Colostrum supplements are sold by a number of companies and are usually made from the milk of cows that have recently given birth. Colostrum is recommended for use at least 3 to 5 days a week by persons with AA or EDS, who may wish to double the labeled recommended dosage. Colostrum is non-prescription, relatively inexpensive, and has few side effects. It can be taken with opioids and other drugs.

Regenerative hormones work best when they are used simultaneously with a high protein diet, collagen or amino acid supplements, vitamin C, B12, and polypeptides.

If a person with AA is not doing well or deteriorating, we recommend adding a second regenerative hormone such as nandrolone. A significant reversal of AA symptoms may require one or more regenerative hormones.

Several times a week we get inquiries from people who have just been diagnosed with AA and are pleading for information on what to do. 

The Tennant Foundation recently published an inexpensive short handbook for persons with newly diagnosed AA that gives a step-by-step plan that can hopefully slow progression of this disease.

If you have had AA for a while and aren't doing well, you may still benefit from some of our most up-to-date knowledge and recommendations in the “Handbook for Newly Diagnosed Cases of Adhesive Arachnoiditis.”

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 bulletins recently issued by the Tennant Foundations’s 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.  

Donating to Charity Helps Relieve Pain (Really)

By Pat Anson, PNN Editor

Would you believe me if I told you that donating money to Pain News Network would help relieve your pain? Or that the more you gave, the more relief you’d get?

I’m a bit skeptical myself, but that’s the conclusion of an unusual UK study that found donating to charity, volunteering your time, and engaging in “prosocial behaviour” have modest pain-relieving benefits.

Researchers at the University of London and Harvard University analyzed the responses of 35,000 people to the United Kingdom Household Longitudinal Survey (UKHLS) from 2011 to 2020. The UKHLS is conducted annually with a broad spectrum of people across the UK, who are asked about their health, work, education, income, family, and social life.

Among the many questions asked is whether respondents volunteered or donated to a charity, and whether their physical pain interfered with their work – which was assessed using a five-point scale of 0 (not at all) to 5 (extremely). The responses of each individual were tracked over a 10-year period.

The peer-reviewed findings, published in the Journal of Psychosomatic Research, found a “modest correlation” between prosocial behaviour and pain relief, and suggest that the more money donated to a charity, the more physical pain was eased. Volunteering helped even more, but there was not a similar dose-dependent effect on the number of hours that were volunteered. Doing both — volunteering and donating — was the most beneficial.

journal of psychosomatic research

Prosocial behaviour has previously been linked to better mental and physical health, but until now, no study had investigated whether it was directly linked to reductions in physical pain.

The authors believe that positive emotions associated with donating and volunteering are key to the improvement. Volunteering was found to be strongly associated with social connection, which is a key predictor of mental and physical wellbeing.

“This research contributes to the new and fast-growing literature that studies pain from a socioeconomic, psychosocial, and behavioural perspective. The work provides useful information for the design and evaluation of public health policies by uncovering how engaging in prosocial behaviour, which can create powerful positive emotions and reduce negative mood like stress, can positively affect one’s pain,” wrote lead author Lucía Macchia, PhD, a Behavioral Scientist and Lecturer in Psychology at City, University of London.

Macchia and her colleagues also found that people who donated to charity reported a slower rise in pain over time, although this effect was not found for those who volunteered.

Of course, there are going to be caveats for a study like this. The authors say “reverse causality” may have influenced the findings, because people in more pain may not physically be able to volunteer and often have fewer economic resources. Individuals who donated were more likely to be married, employed and more educated; while people who did not were more likely to be unemployed, out of the labor force, and have less income.

Researchers concluded that the emotional benefits of being “prosocial” can have a positive impact on pain and overall health.

“Taken together these findings suggest prosociality may provide a novel behavioural strategy for reducing likelihood of experiencing or developing pain interference over time. Moreover, these findings suggest that, while different prosocial behaviours may vary in potency of effects on pain, effects may be due to underlying elements common across the behaviours, including kindness, compassion, or helping toward others, rather than to any specific behaviour per se,” they reported.

I won’t claim that donating to PNN will help ease your pain, but I can honestly say that your donations help keep this website and our newsletter free for everyone. We don’t hide behind a paywall, charge for subscriptions or limit the number of free stories you can see. To do this, PNN depends on reader donations -- large and small -- to continue publishing. Your donations helped us reach nearly 550,000 readers last year, the vast majority of them people in pain.

Can you chip in just $5, $10 or $25 to help? And make it a recurring monthly donation? 

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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.