How to Recognize and Treat Intractable Pain

By Dr. Forest Tennant, PNN Columnist

The realization that a subgroup of chronic pain patients has intractable pain is finally spreading. Over half a dozen states now have laws protecting intractable pain (IP) patients and Wikipedia refers to IP as a disease that causes “a severe, constant, relentless, and debilitating pain.”

A major impediment to treatment of IP is simply that it is not commonly recognized by either patient or practitioner. Basically, the concept that pain alone can cause serious medical complications is not yet appreciated. This fact is evidenced in product advertising and lay person media articles about “chronic pain.” A close analysis implies that everyone has simple chronic pain and needs a “one size fits all” treatment.

The fact is that the IP subgroup of patients isn’t recognized by even the most sophisticated and prestigious medical institutions. For example, I hear almost daily about a person with IP who has severe hypertension, tachycardia, or even angina without any recognition that IP is the culprit.

Other examples are persons with IP who have hormonal deficiencies. Medical practitioners are treating their patients for such hormonal complications as osteoporosis, impotence, and depression, with no recognition that IP is the cause. Regrettably, some persons have had their pituitary or adrenal removed for a “tumor” when in reality the gland was over functioning and enlarged due to IP.

About half of the persons who develop IP have a genetic or inherited disorder. The most common high risk genetic conditions are Ehlers-Danlos Syndrome (EDS), ankylosing spondylitis, and scoliosis.  Other genetic, but less common, risk disorders include Marfan Syndrome, porphyria, and autoimmune diseases such as rheumatoid arthritis and ulcerative colitis. 

How IP Starts 

Thanks to research and studies in recent years, there is now an understanding of the pathologic sequences that lead to IP.  Basically, IP is the end product of multiple events and conditions that may affect a person.   

IP always has a starting or painful initiating event which is either traumatic or inflammatory. Typically, the initiating event takes place several months or years before IP symptoms develop. 

The most common traumatic events are falls, altercations or surgery. Trauma may be to the head, spinal cord, or a nerve in the arm or leg.  The most common initiating inflammatory disorders are fibromyalgia, severe respiratory infection or arthritis. 

The initiating event doesn’t usually cease but “smolders on” with pain that comes and goes.  A diagnosis of chronic pain is likely assigned, and a wide variety of medications and other measures are attempted.   

Interestingly, an initiating inflammatory event such as arthritis or fibromyalgia may seemingly spread. The person may develop additional inflammatory disorders such as thyroiditis, carpal tunnel syndrome, migraine, and irritable bowel. 

Trauma may be severe or minor and the sequelae quite variable. Neuropathies or intervertebral disc degeneration and herniation are the most common traumatic complications that lead to IP.  Pain after the initiating event is usually not constant, but at some point becomes constant. 

This constancy is associated with inflammation that develops in the brain and/or spinal cord of the central nervous system (CNS). Cells called glia or microglia promote CNS inflammation, which can damage the neurotransmitter-receptor systems that control pain.   

Exactly how injuries and inflammatory disorder activate glial cells to produce CNS is unclear. The two most discussed mechanisms are excess electromagnetic energy generated in the injury and inflammatory sites, and autoimmunity or viral invasion of CNS tissue.  The Epstein Barr virus is the most likely virus.

The first chapters of my new book, “Handbook for Intractable Pain,” are dedicated to how to recognize IP symptoms. The second section is a step-by-step treatment program of self-help.

IP doesn’t have to thrust a person into misery and a short life if a three-component protocol is followed:

1. Suppression of inflammation and autoimmunity

2. Restoration of damaged tissues

3. Pain control

To carry out this protocol, one has to become knowledgeable about IP and build, over time, an effective therapeutic program.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain. To Tennant Foundation has launched a new website, IntractablePain.org, where you can learn more about the conditions that cause intractable pain and their many complications.

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

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.  

How Realistic Is a Possible Treatment for Hypermobile EDS?

By Crystal Lindell, PNN Columnist

Ever since I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS) back in 2018, I’ve spent countless hours contemplating what my life would be like if there was an effective treatment.

Last week, Tulane University School of Medicine pushed that question to the forefront. They announced that they may have found a potential cause of hEDS and hypermobility in general. They also theorized a potential treatment.

Ehlers-Danlos Syndrome (EDS) creates fragile connective tissue, which can cause a range of other symptoms including joint pain, digestive trouble, migraines and more.  

Tulane researchers proposed that 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 connective tissue disorders such as EDS. As for treatment, they hypothesized that methylated folate — which is folate that is already processed — could be a possible treatment for the myofascial pain that’s common for hypermobile patients. They published these preliminary findings in the journal Heliyon.

First, it should be noted that none of this was based on a clinical study of patients. Rather, it’s a proposal that they believe should be researched further. As such, there’s been some valid criticism of Tulane’s announcement from the EDS community. Was it premature? Will any of this hold up in a peer-reviewed study? Or are they just giving false hope to the thousands of EDS patients desperate for some good news?

As an EDS patient myself, I understand those concerns and I very much sympathize with them. Many of us have spent too much time being dismissed by doctors, and too much money on treatments that don’t end up working.

Unfortunately, I think we’re going to have to live in the uncertainty right now. We won’t know if this is a viable option until we get a peer-reviewed study. But I am glad that they are looking into this and sharing these types of updates as the research progresses. I’d rather be informed along the way than only be told at the end of the process.

What Would a Treatment Mean for Patients?

What if their theory is correct though? Is that a good thing? I have to confess, my feelings about it are complicated.

The thing about EDS is that it’s different for everyone. As it stands, most doctors treat the symptoms, which, as mentioned above, vary widely. For me, the most debilitating one is intercostal neuralgia — which is not a type of myofascial pain. As such, it seems unlikely that methylated folate would do much to treat it.

But hey, maybe methylated folate is more of a preventative treatment? That alone would be an incredible advancement for hEDS patients.

The question is, would this treatment impact anything else? Do they know if it would only address myofascial pain? Or could it also help with other symptoms? And would that even be a good thing if it did?

EDS touches every aspect of my body and even most aspects of my personality. There’s the velvety skin everyone comments on when they shake my hand. And the constant comments about how I look for my age, which also seems to be related to how EDS impacts my skin. Would methylated folate treatment change that at all? How so? And what would I end up looking like?

The most well-known EDS symptom is probably loose joints, which means they easily overextend. For me, that’s meant a lifetime of sprained ankles and joint pain. But again, what happens if methylated folate changes that? My joints may be loose, but they’re the only ones I’ve ever known. Would stiffening them up actually help me at this point? Or would I have to re-learn how to move my own body?

What about my mind? EDS patients have higher than average rates of neurodivergence like autism and ADHD. They also have higher rates of mental health issues like depression and anxiety. Could this treatment change our brains too? Or, if not, what if they eventually find a treatment that does? Would it alter aspects of people’s personalities?

There’s also the more logistical issue of EDS as a name at all. According to the National Library of Medicine, a syndrome refers to a group of symptoms and physical findings without a direct cause. Once a cause is found, the symptoms are typically renamed as a “disease.” So, if the researchers at Tulane did find a cause, what do we have? Ehlers-Danlos disease? EDD?

One thing we do know is that EDS and hypermobility cause immeasurable pain and suffering for a lot of people, so we do need more research into potential treatments. Time will tell if folate treatment proves effective or not, but either way, I hope that there are a lot more potential treatments coming.

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. 

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. 

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. 

How TMS Helped Me Feel Better Physically and Mentally

By Madora Pennington, PNN Columnist

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

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

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

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

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

MADORA GETTING TREATMENT AT UCLA’S tms CLINIC

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

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

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

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

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

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

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

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

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

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

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

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

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

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. 

Medical Gaslighting of Woman for Being of 'Childbearing Age' Goes Viral

By Madora Pennington, PNN Columnist

After seeing a neurologist earlier this month for cluster headaches, Tara Rule’s doctor walked her to the front desk. She thanked him. Then, in her car, she burst into tears. Instead of treating her pain, the doctor turned the appointment into a lecture about a hypothetical pregnancy that she didn't want. He had made her feel so horrible, she wanted to die.

“I can’t keep living in world where it is a game to them,” she said to herself.

Feeling hopeless and alone, Rule pulled out her cellphone and, tears streaming down her face, recorded a video recounting what had just happened and how she felt about it.

It is rare to actually see the raw, visceral reaction to medical gaslighting, and how it affects someone’s self-worth and mental health. Many patients leave such appointments doubting themselves, often becoming unwilling to seek medical care as the medical traumas add up.

Rule, 31, is already on disability from a lifetime of complex medical problems, including Ehlers-Danlos Syndrome (EDS), a connective tissue disorder.

When she realized her appointment at a Glen Falls, New York hospital was going sideways, she reached into her bag and began an audio recording with her cellphone. New York allows single party consent to recording, so she didn't need to have the doctor’s permission.

Rule was trying to keep it together, despite her intense pain from debilitating headaches. She wanted the recording so she could sort out what happened later. She wanted to make sure her PTSD from past medical trauma was not triggering her, possibly causing her to misunderstand the doctor.

TARA RULE

In the recording, Rule’s neurologist said he would not give her a certain medication to treat her headache. His reason? She could get pregnant and that particular drug — which he did not name — can cause birth defects. So he doesn't prescribe it to women of "childbearing age."

Rule pushed back, pointing out she is already on a medication for an autoimmune condition that can cause birth defects and miscarriages. And because EDS is a genetic disorder, she does not want to have a child and risk passing it on. Plus, a pregnancy could be harmful for her health.

Instead of making the appointment about Rule's pain and her need for treatment, she says the doctor asked her intrusive questions about her sex life. He disregarded the medical information she provided and patronizingly suggested she might change her mind if she were pregnant. He also insisted her sexual partner would have to consent to her being treated with the unnamed drug.

Rule posted her anguished video on TikTok, and it soon went viral. She's received countless messages from others who have been through similar encounters. While it made her feel less alone, it saddened Rule deeply to learn how many people have stories like hers. The media took notice with articles on Jezebel and in the Albany Times Union.

Severe headaches and cranio-cervical pain are commonly seen in people with EDS, an inherited failure of the body to produce strong collagen. Rule has suffered from migraines since she got a concussion at age eight. Her cluster headaches started in 2016.

“They are a whole different beast,” she told me. “The pain is indescribable. It doesn’t let up. It won’t go away.” Rule says she is a happy person who is not suicidal, but pain like that makes you wish you weren’t alive.

Rather than treat the suffering patient in front of him, the neurologist prioritized a hypothetical situation, in which Rule's birth control fails and she winds up pregnant. For him, this fantasy scenario was more important than giving her the best medical option for pain relief.

Rule complained to the hospital, which apologized and began an investigation. She also created a petition to end doctors' ability to deny treatment to women because they might get pregnant. So far, over 25,000 people have signed it, making it one of the most popular petitions on Change.org.

“As a living, breathing human being who exists, I feel it is absurd that doctors who are expected to provide the best, most effective care and treatments to their patients are able to deny effective treatments due to the potential for birth defects in patients of child bearing age who are not currently pregnant,” she wrote in the petition. 

The week after her botched meeting with the neurologist, Rule found herself in throes of horrendous head pain and took herself to urgent care. She was receiving an IV and oxygen when a group of doctors and security personnel marched into her room. She panicked, thinking of when she was told she had lesions on her brain. Were these people coming to give her bad news like that?

No, the staff was not here to provide medical services. They had come to discharge her. The hospital Rule had complained to apparently called other clinics in the area about her. The urgent care personnel accused her of livestreaming the appointment with her neurologist, which she did not. Nonetheless, they wanted her out immediately. She tried to give the desk her new insurance information as she left, but the staff had closed the window and simply stared at her.

“Shouldn’t they be putting that doctor on leave rather than track my social media and call hospitals? It’s scary,” she told PNN.

Now Rule is afraid to seek medical care. Most of the facilities in her area are owned by that hospital system. Her primary care doctor is part of it. She is not sure if any of them will see her.

“I’m on disability. I have no money. Am I going to have to move?” she wonders.

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. 

'Bend or Break' Raises Awareness About Invisible Illness

By Madora Pennington, PNN Columnist

Even though he was just a kid, people called Mitch Martow lazy. Too exhausted to maintain friendships and falling asleep in school, his classmates thought he was strange. Specialists couldn’t find a medical reason for his complaints, and psychiatrists had no answers either. Even morphine didn’t ease the pain that tortured him in his early teens.

One day, worn out from physical suffering that was compounded by so many doctors saying his pain was a mental issue, Mitch attempted suicide. He cried when he awoke in the ICU because he had not succeeded.

This is the story told in the documentary “Bend or Break.” Based mainly on Mitch’s blog posts, the film features interviews with Mitch and his family about how his mysterious illness turned their lives upside down and how a correct diagnosis changed all of that.

Mitch has Ehlers-Danlos Syndrome (EDS), a term for a number of similar, poorly understood disorders where the body fails to make stable collagen. As a result, the person has extreme flexibility, to the extent that their joints can bend backward.

With no obvious outward signs, many of us with EDS go decades without a diagnosis, despite frequently seeking care for its debilitating and perplexing symptoms.

MITCH MARTOW

When he was finally diagnosed correctly, Mitch’s family was troubled because EDS is under-researched and lacks effective treatments. For Mitch, his diagnosis made him happy: he was not crazy and could find others like him, which meant everything. It was the end of isolation.

To tell the story, Bend or Break showcases a young contortionist and dancer, Toria Summerville. Toria also has Ehlers-Danlos Syndrome, so she is capable of astounding feats of flexibility. Interspersed with the interview segments are Toria’s beautifully choreographed dances that express the emotionality of the Martow family’s experience.

‘I Felt Very Alone’

Toria was 19 when she participated in the documentary, but her performance has the maturity and depth of someone much older. From childhood, she always knew she was different but didn’t know why. With no understanding of what was wrong, it was up to her to get by and cope with unacknowledged and unaddressed symptoms.

When she was 5 or 6 years old, Toria would be awake all night, crying in pain. Doctors said it was growing pains. When she was in the 6th grade, she was put on medication for anxiety and depression. Doctors assumed she had an eating disorder, but she was allergic to many foods, a common problem with EDS.

“I felt very alone growing up and very confused with myself. I knew something was going on, but I didn’t know what,” Talia says.

She struggled with brain fog and fatigue. Her differences attracted comments from other kids, which felt like bullying. In dance class, others would laugh at her inability to control her superhuman flexibility.

Toria was often getting injured with dislocating joints and easy bruising. Concerned guidance counselors would ask if anyone was abusing her. Well-meaning adults put her in a peer support group, but she could not relate to the other kids. There, therapists offered helpful tools, but they were not what Toria needed, so it felt even more isolating.

At a performing arts high school, Toria found understanding. Her circus coach instinctively understood her and took her under his wing. “We worked on abilities that my body could do,” she says.

For Bend or Break, Toria dedicated herself to understanding and demonstrating what the Martow family experienced, a process that was emotionally challenging, not only because of what Mitch went through but because much of it hit close to home. She walked a fine line.

“I had to be sensitive that it was Mitch’s story, not mine. I had to be in tune with all the milestones he was going through and portray that with my movements and facial expressions,” she explained.

In one sequence, she dances in a straitjacket, an idea she came up with from the feeling of being trapped by so many misdiagnoses herself.

Bend or Break concludes with interviews of others with EDS. Like Mitch, they look perfectly healthy. No one would guess how debilitating their EDS problems are. The documentary drives home the difficulty of having an invisible illness — one not indicated by obvious signs of impairment. People with invisible illnesses and disabilities have a hard time getting believed.

Toria hopes Bend or Break will spread awareness about EDS to the general population and medical professionals in every field. Had she been diagnosed correctly at an earlier age, Toria could have avoided many injuries and gotten better help in school.

“We need to cut back the time to get a diagnosis. My life would have been a lot easier if I had known about EDS sooner,” she says.

Mitch has seen firsthand the positive effects Bend or Break is having. Medical doctors have thanked him for the film because it helped them understand patients with EDS or other invisible illnesses. He’s also spoken to psychology students who have watched the film and is hopeful that when they start working as mental health professionals, they’ll be cautious about insisting that a patient’s chronic pain is psychosomatic.

The film encourages healthcare providers to be careful with diagnoses like "conversion disorder," where a symptom is assumed to be mental because no physical cause can be found. Being treated that way nearly destroyed Mitch’s life. “I tried to use suicide to escape from it,” he says.

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. 

Inflation Squeezes Families Dealing With Chronic Illness

By Heidi de Marco, Kaiser Health News  

Deborah Lewis rose from bed before dawn and signed in to her phone so she could begin delivering fast food, coffee and groceries to residents in this western patch of the Mojave Desert where test pilot Chuck Yeager broke the sound barrier generations ago.

Lewis prayed she would earn $75, just enough to fill the tank of her Kia sedan so she could drive her 8-year-old daughter, Annabelle, 80 miles south to Los Angeles to receive her weekly chemotherapy treatment for acute lymphoblastic leukemia. Just a year ago, the same tank of gas would have cost $30 less.

After a full shift as a gig worker, the mother had earned close to what she needed. “It took a lot longer than I thought,” she said.

High inflation is hitting families across the nation. According to the U.S. Bureau of Labor Statistics, consumer prices in July were up 8.5% from a year earlier, one of the biggest increases in recent decades. The Bureau of Economic Analysis found that consumers are spending the most on housing and utilities, food, and medical care.

For millions of families living with chronic diseases — such as heart disease, diabetes, and cancer — or other debilitating conditions, inflation is proving a punishing scourge that could be harmful to their health. Unlike dining out less or buying fewer clothes, many patients don’t have a choice when it comes to paying for medicine, medical supplies and other ancillary costs. Some must drive long distances to see a specialist, and others must adhere to a strict diet.

“Chronic disease patients are usually on the front lines of seeing a lack of supplies or an increase in out-of-pocket costs,” said Paul Conway, chair of policy and global affairs for the American Association of Kidney Patients.

Health care has grown increasingly unaffordable. Half of adults report having difficulty paying their health costs, according to KFF polling. One-third say they or a family member has skipped recommended medical treatment in the past year because of the cost, and one-quarter of adults report rationing pills or leaving prescriptions unfilled.

Inflation has squeezed families further by driving up the price of gas and food, as well as medical products such as needles and bed-wetting pads. Health care costs have risen 5.1% since July 2021, and medical commodities — which include prescription and over-the-counter drugs, medical equipment and supplies — are up 3.7%.

Inflation is particularly detrimental to the health of low-income patients; studies have found a strong link between poverty and health. According to the California Budget & Policy Center, more than half of California households making $50,000 or less struggle to pay for food, housing, and medical costs.

For Deborah Lewis and her husband, Spencer, their concerns about the rising cost of gas have never been about skimping on summer travel or weekend getaways. It’s about making sure they have enough gas to drive Annabelle to Children’s Hospital Los Angeles for chemotherapy and other medications delivered through a port in her chest.

The family relies on Spencer’s disability check, which he receives because he has Ehlers-Danlos syndrome, a hereditary disorder that causes him severe joint pain. He also copes with broken discs in his spine and a cyst pushing against his spinal nerves. In January, he stopped working as a pest control technician, shifting more financial responsibilities to his wife.

The disability check covers rent and utilities, leaving Deborah’s freelance work to cover gas. They also get $500 a month from Miracles for Kids, which helps families with critically ill children.

On a June morning, Deborah packed snacks for the drive ahead as Annabelle, wrapped in her favorite blanket, waited on the couch. Most of her long blond hair has fallen out because of her treatments.

The night before, Deborah spent $73.24 to fill up at Costco. The average price of a gallon of gas in California remains above $5.

Before they left, Deborah learned the couple carried a negative balance in their checking account. “I have so much on my plate,” she said.

The family has already delayed health care for one family member: Their dog, a Doberman pinscher named Chief, skipped a vet visit for a mass pushing up his intestines.

AnNABELLE AND HER MOTHER, DEBORAH LEWIS (khn IMAGE)

Politicians are keenly aware of inflation’s leaching effects. In October, most California households will receive “inflation-relief checks” of up to $1,050 to help offset the high cost of gas and other goods under a budget Gov. Gavin Newsom signed in June.

But health experts worry that even with the one-time aid, affordability could become a life-or-death issue for some Californians. For example, the price of insulin can range from $300 to $400 per vial without insurance.

“We’ve seen a number of patients living with diabetes and on a fixed income greatly impacted by rising inflation,” said Matthew Freeby, an endocrinologist and director of the UCLA Gonda Diabetes Center. “Both Type 1 and Type 2 diabetes typically require multiple prescription medications that may already be costly. Patients have had to choose between day-to-day finances and their lifesaving medications, such as insulin or other treatments.”

Inflation is also a challenge for people who depend on certain foods as part of their health care regimen, especially with food prices up 10.9% in the past year.

Toyan Miller, 60, an integrative nutritional health practitioner from San Dimas, California, has been diagnosed with vasculitis and Hashimoto’s thyroiditis, two autoimmune diseases that cause inflammation. Miller’s medically tailored diet requires gluten-free, organic food. Miller said she’s dipping into her savings to afford the average of $300 she spends each week on groceries. Last year, she spent about $100 less.

“The avocado mayonnaise price freaked me out,” she said. “It used to be $8. Now, it’s $16.99.”

Even those who are healthy may find themselves helping family or friends in need.

In the mountainous Los Angeles neighborhood of Laurel Canyon, Shelley Goldstein, 60, helps her parents, both in their 90s, pay for items, such as incontinence products, not covered by health insurance. Goldstein’s father was recently diagnosed with Alzheimer’s disease and lives in a retirement community with his wife, Doris.

“Those are basic things, but that’s like $70 a month between the two of them,” said Goldstein, who works as a speaking coach. “That’s a lot.”

Goldstein worries about how much more of her parents’ health costs she’ll have to shoulder since they are pensioners on fixed incomes.

“What keeps me up at night right now is what’s to come,” she said. “There’s two of them. My parents’ increased need for pads, meds, and other medical support increases as their health declines.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues. This story first published on California Healthline, a service of the California Health Care Foundation.

How Intractable Pain Causes Brain Tissue Loss

By Dr. Forest Tennant, PNN Columnist

The brain not only controls pain but the endocrine, cardiovascular, metabolic, respiratory and gastrointestinal systems. Any or all of these biologic systems may malfunction if there is brain tissue loss.

Beginning in 2004, brain scan studies began to document that brain tissue loss can be caused by intractable pain. Today, almost 20 years later, this important fact appears to be either unknown or a mystery to both the public and medical professionals.

Basic science researchers have unraveled the complex process of how and why this pathological phenomenon may occur. A good understanding of how this pathology develops is critical to properly care for and treat persons who develop intractable pain whether due to a disease or an injury.

What Causes Tissue Loss?

Tissue loss anywhere in the body is caused by inflammation, autoimmunity, or loss of blood supply due to trauma or disease. The brain scan studies done since 2004 that documented brain tissue loss were not done in persons who had a stroke or head trauma, but in pain patients experiencing inflammation and autoimmunity (i.e., collagen deterioration). It turns out that both biologic mechanisms may operate to cause brain tissue loss in intractable pain patients.

In the pursuit of understanding brain tissue loss and its accompanying malfunctions, it has been discovered that the brain and spinal cord (central nervous system or CNS) contain cells called microglia. They are closely akin to the immune protective cells in the blood stream which are called a “lymphocytes.”

The microglia in the CNS lay dormant until a harmful infection, toxin or bioelectric magnetic signal enters its domain, at which time it activates to capture and encapsulate the danger or produce inflammation to destroy the offender.

If the microglia are overwhelmed by some danger, such as a painful disease that isn’t cured, it produces excess inflammation that destroys some brain tissue which can be seen on special brain scans. Some viruses such as Epstein Barr may hibernate in microglia cells and create an autoimmune response, which magnifies inflammation and brain tissue loss.

Intractable pain diseases such as adhesive arachnoiditis (AA), reflex sympathetic dystrophy (CRPS/RSD), and genetic connective tissue diseases such as Ehlers-Danlos syndrome may incessantly produce toxic tissue particles and/or bioelectromagnetic signals that perpetuate microglial inflammation, tissue loss and CNS malfunctions.

This is the reason why proper pain management must have two targets: the pain generator and CNS inflammation.

How To Know You Have Lost Brain Tissue

If your pain is constant and never totally goes away, it means you have lost some brain tissue and neurotransmitters that normally shut off pain. If you have episodes of sweating, heat or anxiety, you probably have inflammation that is flaring. Naturally, if you feel you have lost some reading, calculating or memory capacity, it possibly means you have lost some brain tissue. MRI’s may also show some fibrous scars.

Fortunately, studies show that if a painful disease or injury is cured or reduced, brain tissue can regenerate. While we can’t guarantee that brain tissue will be restored, we offer here our simple, immediate and first step recommendations using non-prescription measures.

First, do you know the name and characteristics of the disease or injury that is causing your pain? Are you engaging in specific treatments to reduce or even cure your disease, or are you simply taking symptomatic pain relief medications? 

Start at least two herbal-botanical agents that have some clinical indications that they reduce inflammation in the brain and spinal cord: serrapeptase-palmitoylethanolamide (PEA) and astragalus-curcumin-luteolin-nanokinase. You can take different agents on different days. 

Increase the amount of protein (meat, fish, poultry, eggs) in your diet. Consider a collagen supplement. Limit starches and sugars. 

Start taking these vitamins and minerals:

• Vitamin C - 2,000mg in the AM & PM

• Vitamin B-12, Vitamin D

• Minerals: Magnesium and selenium

We recommend vitamins daily and minerals 3 to 5 days a week. 

The above will help you stop additional tissue loss and hopefully regenerate brain tissue.  

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 Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

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

Why Antibiotics Can Lead to a C. Diff Infection

By Madora Pennington, PNN Columnist

Got antibiotics? Then you may be on your way to a dangerous and potentially deadly infection. When antibiotics alter the balance of intestinal flora, a bacteria that causes diarrhea and inflammation of the colon -- clostridioides difficile -- can take over and result in a C. diff infection.

That is what happened to Kristy Collins. It took two rounds of antibiotics to clear up her severe ear and sinus infection. A few days later, a lunchtime salad left Kristy with a strangely upset stomach. She thought it was nothing more than a bit of food poisoning, but soon she was having malodorous belches and the foulest smelling diarrhea. She also became severely dehydrated.

At first, her doctor suspected a stomach virus. But when her stomach troubles didn’t relent, a stool test revealed that Kristy had C. diff.  Luckily, she was diagnosed and treated within a few days.

Because she has Ehlers-Danlos Syndrome (EDS), an inherited chronic illness, Kristy is a seasoned patient with a medical team in place. But having EDS also makes her more like to get C. diff. Thus far, she has had 19 surgeries for EDS-related problems. Most surgical procedures require a round of antibiotics to prevent infection and more if an infection occurs after surgery.

After her bout with C. diff, Kristy needed another surgery. She and her doctors were very concerned about a possible C. diff recurrence, as about 1 in 5 patients will get another infection. Kristy’s doctors tested her after surgery to ensure it had not returned.

Kristy worries whenever she needs antibiotics and questions her doctors if they are truly necessary. She already follows a very healthy diet, which helps manage her chronic illness and suspects this may be part of why she has not had a C. diff recurrence. She also follows her doctors’ advice.

“It was the first time doctors told me to take probiotics,” Kristy says, which she did while taking antibiotics. Probiotics are living microorganisms that enhance intestinal health. They are found in fermented food like yogurt and sauerkraut or made into supplements.

Antibiotics tend to alter that flora in the colon, creating an environment where C diff can flourish. Many people have immune systems that can handle a C. diff infection without symptoms, but others get very ill with watery diarrhea that may contain blood or mucus, or cause nausea, vomiting, loss of appetite, abdominal pain, and bloating. At its worst, C. diff can cause a loss of blood circulation, sepsis, perforated bowel, or swelling so severe it shuts down the colon.

It is not just antibiotics that can cause a C. diff infection. Other possibilities are chemotherapy treatment, proton pump inhibitor medications (usually used to treat acid reflux), kidney or liver disease, malnutrition, or simply being an older person. C. diff infects approximately half a million Americans annually, according to the CDC. 

C. diff can also be fatal. In the U.S., nearly 30,000 people die every year from a C. diff infection. Diagnosis is usually made by testing a stool sample. It is treated with antibiotics, monoclonal antibodies, or, in severe cases, surgery.

How to Prevent C. Diff

Good hygiene practices can help prevent its spread. For C. diff, hand washing with soap and water is more effective than using alcohol-based hand sanitizers. It is also essential to limit the use of antibiotics to situations when they are truly necessary, to avoid disrupting the balance of bacteria in the colon. Many doctors recommend repopulating the beneficial bacteria with probiotic supplementation during or after antibiotic treatment.

Recovering from a C. diff infection can be mysterious as well as complicated. Many patients are not advised on how or what to eat or drink. Food can seem like the enemy, and meals can feel traumatizing.

To address this unmet need, the Peggy Lillis Foundation, a non-profit advocacy organization created in honor of a beloved kindergarten teacher whose life was taken suddenly by C. diff, recently published a nutrition and lifestyle guide.

 “This guide begins to address the dearth of information by combining medical expertise, dietary guidance, and first-hand knowledge from C. diff survivors,” says Executive Director Christian John Lillis.

The guide is sponsored by probiotic manufacturer Bio-K Plus and put together by the PLF’s Scientific Advisory Council. It covers tips on managing the acute phase of a C. diff infection, preventing a recurrence, improving gut health, dealing with the emotional implications of C. diff, and recipes. It is available to download free by clicking here.

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. 

What’s Missing in ‘Elvis’ Movie: The King’s Chronic Illness

By Pat Anson, PNN Editor

There’s a scene towards the end of the new “Elvis” movie when you know the end is coming soon. Presley, as depicted by actor Austin Butler, collapses in a hallway minutes before being scheduled to take the stage at the International Hotel in Las Vegas.

Instead of rushing an unconscious Elvis to a hospital, manager Tom Parker --- played by a surprisingly villainous Tom Hanks -- declares that the show must go on and summons “Dr. Nick” to make it right. After a quick injection of stimulant drugs, Elvis recovers just enough to sing, dance and entertain an adoring crowd in a packed showroom.   

That one scene sums up how the real Elvis Presley spent his final years before dying of an apparent heart attack in 1977 at the young age of 42. Popping pills. Slurring his words. Deeply depressed. And driven to continue performing by “Colonel” Parker and others.

“They really tried to push Elvis beyond his capacity in the last few years of his life. He was disabled,” says Dr. Forest Tennant, a retired physician and pain management expert who is one of the last people alive to be intimately familiar with Elvis’ drug use and medical problems.

In 1981, Tennant was hired by an attorney for Dr. George Nichopoulos (Dr. Nick), who faced criminal charges in Presley’s death. Tennant reviewed the autopsy report, medical records and a confidential 161-page private investigation, and testified as a defense witness for Nichopoulos, who would be acquitted of charges of overprescribing drugs.

After the trial, Tennant remained curious about Elvis’ medical problems and continued his research while treating people with intractable pain. The knowledge and experience Tennant gained in the last 50 years led to his recent book, appropriately titled “The Strange Medical Saga of Elvis Presley.”  

Elvis did indeed suffer from heart problems aggravated by an excessive use of drugs, but Tennant believes the ultimate cause of his death was a connective tissue disorder called Ehlers-Danlos syndrome (EDS), a major cause of intractable pain and other chronic health problems.

A diagnostic screening tool for EDS didn’t exist when Elvis was alive and few physicians were even aware of the condition. But Tennant thinks Presley had all the symptoms of EDS, including an unusual degree of flexibility and double jointness that allowed him to swing his hips and gyrate wildly. Those sexy dance moves helped make Elvis famous, but they also foretold what lay in store for him.

“EDS is a genetic connective tissue collagen disorder, and what that means is that you are genetically predetermined to have your collagen in certain tissues either disappear or deteriorate or become defective, and to put it bluntly, you can have a rectal problem and an eye problem at the same time due to the same cause because your collagen is deteriorating in these tissues,” Tennant told my colleague Donna Gregory Burch in a 2021 interview. “If you get a severe case like Elvis Presley, your life is going to be very miserable, and you're going to die young unless you get vigorous treatments.”      

The day before he died, a dentist gave Presley codeine for an aching tooth, not realizing how sick he was or that codeine could cause his heart to stop. Elvis collapsed in the bathroom 24 hours later. His sudden death led to rumors that he died from an overdose or even a horrible case of constipation. The truth is more complex.

“Nothing happened to Elvis Presley that we don't have a good logical, scientific explanation for now. But certainly back in those days we didn't,” Tennant explained. “Elvis Presley had multiple diseases. He was terribly ill, and he died accidentally in some ways with a dentist giving him codeine for his bad tooth, and his bad teeth were also part of the same disease that gave him a bad colon and a bad eye and a bad liver. They were all connected.

“He had all these metabolic defects due to his genetics, and so the codeine built up in his system. He had this terrible heart, so he died suddenly, within seconds, as he was trying to sit on the commode.”

Fortunately, the “Elvis” movie spares us any final scenes like that – ending instead with actual clips from one of Presley’s last concerts. They show a tired and very sick man, aged beyond his years and sweating profusely. But he still sang like “The King.”

All proceeds from sales of “The Strange Medical Saga of Elvis Presley” go the Tennant Foundation, which gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.

Roger Chriss: Remembering a True Helper and Advocate

By Pat Anson, PNN Editor

“Roger was a good friend and caring person. He will be missed tremendously.”

“May this dear, wonderful, kind man rest in the peace he deserves. Free of pain.”

“Heaven just got a great mathematician. Heaven's gain. Our loss.”

Those are just a few of the heartfelt tributes being posted online about PNN columnist Roger Chriss, who was a longtime advocate and friend to people living with Ehlers-Danlos syndrome (EDS) and other rare diseases.

Roger died unexpectedly on May 2 at a hospital near his home in Kirkland, Washington. He was 56 years old. 

Although Roger lived with EDS – a chronic and progressive disease that affects the joints, blood vessels and other connective tissues -- it’s unclear if that contributed to his death.  His brother Neil says Roger experienced chest pains and drove himself to the hospital, where he was diagnosed with a mild heart attack.

“He was given blood thinners as part of standard care. He was due to be released and suddenly collapsed and was found with no pulse and no blood pressure,” said Neil Chriss. “In trying to figure out what had caused the collapse they found he had lost a lot of blood internally, so they suspected this had to do with the combination of blood thinners and E-D related weakness in blood vessel walls.

“You should all know that my brother derived great meaning being part of your community. We talked frequently about E-D and the difficulties both mental and physical that go along with it. It’s sad for me to remember that he talked about losing people from the community being an all-too-often experience.”

ROGER CHRISS

Roger was an active member and strong supporter of The Ehlers-Danlos Society, where he co-hosted a support group for men with EDS. He was the first recipient of the organization’s Community Advocacy Award.

Roger grew up in Westchester County, New York where he developed an early interest in mathematics, music, computers and foreign languages. He graduated from Wesleyan University in 1987 with a major in East Asia studies. He later earned a Master’s degree at the Monterey Institute of International Studies and remained there as a faculty member.

Roger was fluent in Japanese, Spanish, French, Latin and other languages. He was a prolific writer and authored two books that reflected his diverse interests: "A Comedy of Time" and "Translation as a Profession."

Roger became a columnist for PNN in 2017 and later joined our board of directors. I can honestly say I learned something new from every column that Roger wrote, whether he was debunking myths about the opioid crisis, challenging the hype about medical cannabis, or advocating for more funding of rare disease research.

I admired Roger’s dedication to the truth, in an age when misinformation, hype and political dogma drives too much of the news coverage about healthcare. He brought an abiding concern about patients to every issue he wrote about, and a farsighted view of where it might take us.

In recent years, Roger posted almost daily on Inspire, an online health community for patients, where he supported and made many friends in the EDS and rare disease community. He used the screen name “Seshet” – a variation on the name of an ancient Egyptian deity of wisdom, science and mathematics. It was a fitting nickname for Roger.

“Seshet was truly a guiding light to me and so many others through this pandemic,” one poster wrote. “I’m sure he is in heaven calculating the probabilities of why this happened to him, but I know in his core he understood the unpredictability of life.”

“While his life was too short, his life had great meaning. He was so very wise and generous with this community, a true helper, which I believe is life’s highest calling,” said another.

Roger’s family is planning a private memorial for him. In lieu of flowers, they’re asking friends to consider making a gift to The Ehlers-Danlos Society. Click here for details. 

Coping With Pain and Isolation During the Pandemic

By Alexa Mikhail, The 19th

Originally published by The 19th

Even before the pandemic, Sabra Thomas ordered her groceries. The 33-year-old has not been able to push a cart and her walker at the same time for years, and she can’t pick up heavy cases like water. 

It’s the pain — the invisible enemy she faces daily.  

In March 2020, when the pandemic set in and grocery orders surged, Thomas was never able to get hers delivered in time. She had to start placing orders five weeks ahead, and they kept getting canceled. 

“I desperately needed food,” said Thomas, who has lived alone for the bulk of the pandemic. “And because of my chronic pain and feeling like food options were limited, I was rationing out my meals. Many days I had to figure out how to balance taking meds and how much to eat.” 

Tasks that seem quotidian to so many have brought Thomas anxiety for years. At age 12, Thomas was diagnosed with Ehlers Danlos — a degenerative chronic pain condition affecting connective tissue, primarily the skin, joints and blood vessel walls. 

She suspected, and later confirmed, that she was having hip dislocations all through childhood, which were constantly dismissed by doctors when she was younger, she said. When she finally received her diagnosis, she was told the disease would only progress as she got older. In high school, she was able to be more active, but the plays Thomas used to act in, the basketball and dance that defined her when she was growing up, have become nearly impossible activities now. The former dance instructor hasn’t danced in over a year. 

On a good day prior to the pandemic, Thomas might go dance for a few hours with friends — though she would pay for it the next day. On a bad day, she was completely bedridden, usually waking up with joint dislocation, a migraine, vertigo or a combination of the three. The pain is always hidden.

“With a chronic pain condition, it’s like ‘OK, you look normal.’ I used to hate when people said that. What the heck does that mean, I look normal?” Thomas said. “I don’t feel normal.” 

Now, Thomas lives in an apartment alone in Birmingham, Alabama, so she can be closer to family. Before moving, she hadn’t seen her family for a year. After pandemic-induced isolation and struggling to secure medical appointments, Thomas is tired. As a Black woman with chronic pain, she’s had to be her own medical advocate, she said. 

“I’m here by myself. All I can focus on is my pain and the loneliness,” Thomas said. “I was feeling trapped, hopeless in all facets of my life.” 

Disparities in Pain Care

In the United States, 70 percent of people struggling with some form of chronic pain are women, despite 80 percent of studies on pain involving either men or mice. It’s a common pitfall of medical research that experts say could be because it is harder to get women of childbearing age to participate in studies. While research on pain is difficult given the ambiguous factors involved in feeling it, women report experiencing higher levels of pain than men, according to a study in Scientific American magazine. 

There are vast disparities across both racial and gender lines when it comes to the validation of pain and getting treatment. Black patients are 40 percent less likely to receive medication for acute pain compared to White patients, and 34 percent less likely to be prescribed opioids, according to an analysis by the American Journal of Emergency Medicine. 

That’s become even more difficult in the pandemic, experts say.

Thomas has long felt like she’s screaming to an empty auditorium when it comes to her checkups. Even when she was seeing doctors in-person, she seldom felt truly believed. In 2018, she waited months to see a top gynecologist for the excessive bleeding and pain she was having. Knowing her diagnosis, she thought the doctor, who was a White man, would surely run tests. He insisted it was her job — at the time she worked in social security as a customer service representative — that was making her stressed. 

“I just felt very deflated,” Thomas said. “I felt like he was making me question myself.” 

When Thomas went to get a second opinion by a doctor, a woman of color, she immediately found out she had to go into emergency surgery for eight inflamed fibroids linked to her Ehlers Danlos. 

Now, Thomas is hardly able to secure in-person appointments because of a backlog from the pandemic. Virtually it’s much harder for her to show a physician her pain and explain her experience, she said. 

The ambiguity around how people express their pain, coupled with ingrained biases and stereotypes, makes it hard for the most marginalized people to be taken seriously when explaining their pain, said Janice Sabin, a researcher on implicit bias in medicine at the University of Washington. This notion of “it’s all in your head” or “you’re crazy,” dates back a century when it comes to women and women of color experiencing chronic pain, Sabin said.

“The lived experience of discrimination is incredibly damaging. It is an emotional burden, but it’s also something that can be tapped intergenerationally,” Sabin said. “Women were considered to be in the 1950s, for example, ‘hysterical’ — just that legacy of not believing women and women being looked at as weak.”

Being Your Own Advocate

Having to be your own advocate is the hardest, Thomas said. And especially during a pandemic, it is nearly impossible to stay on top of your own appointments and procedures. Typically, Thomas sees a specialist once a month and a therapist once a week. This year, Thomas tried to get into a new primary care doctor. She called to schedule in February for an appointment, and the earliest opening was in July. For someone in her level of constant pain, the wait is excruciating, forcing her to take her care into her own hands, doing her own medical research and reaching out to countless experts for advice and help. 

“I had so much medical documentation,” Thomas said. “I could have made my own library.”

Telehealth skyrocketed at the beginning of the pandemic. Between June 26 and November 6, of 2020, 30.2 percent of weekly health center visits occurred via telehealth, according to the Centers for Disease Control and Prevention. Telehealth has made it easier for those in rural areas or for people who have children at home to get appointments, and experts say it’s here to stay: 83 percent of patients expect to use virtual appointments after the pandemic. 

On the flip side, it is more difficult for those like Thomas to feel completely understood. Vulnerable pain patients can be seen as seeking unneeded drugs when they simply need any remedy to get them out of bed, said Shoshana Aronowitz, a researcher of racial disparities in pain medications and the opioid crisis at the University of Pennsylvania. In the pandemic, the limited access to pain doctors affects those most marginalized, specifically women, people of color and LGBTQ+ people who may have previously experienced discrimination in treatment. 

“We’ve gotten into the situation where people, especially Black Americans, have less access to pain care, and then also have less access to substance use disorder treatment. If people don’t have access to other types of treatment, that’s not OK,” Aronowitz said. 

She advocates for a system in which the most marginalized are prioritized for a holistic approach to care that includes both telehealth and in-person therapy and remedies post-pandemic. There are a handful of pain centers across the country that view pain in this way, but with waitlists and costs for initial evaluation, they remain very inaccessible, experts said. 

“In primary care, integrated team care is a model that is being advanced,” Sabin said. “Sort of having this medical home all in one place, so people aren’t being sent to a counselor for this and somewhere else for that. The providers in that model can discuss patients together. Everything is in one spot.” 

Similar to chronic pain patients, many of whom struggle with undiagnosed ongoing medical problems, long-haul COVID patients face that same uncertain battle. With doctors spread thin working to address those with ongoing COVID-19 symptoms, Sabin hopes this is a turning point in which mysterious lingering chronic pain conditions can be looked at and appreciated in a new light. 

Thomas decided last month to leave her job as a customer service representative and apply for disability status. Taking the phone calls her job required all day, especially when her pain flared up, was just not doable. 

The pandemic pushed her to make changes that will help her take care of herself and the uncertainty of her condition. She still feels ashamed: That she can’t function to the extent she desires, that she has to endure the financial instability of a monthly check. She still hasn’t told many of her friends about quitting her job. When she has Zoom calls, she usually avoids the topic of work. 

But still, she said, she is now ready to own her reality.

“For us in chronic pain, we’re always like, ‘We just got to keep going.’ ‘We push through it.’ And then by the time we finally stop, our body’s completely broken,” Thomas said. “So I’m trying not to do that because I am 33. I’m not 103.” 

“Ironically, the pandemic gave me an out,” she added. “It was the catalyst to push me to make a change for myself, for the good of my health and well-being.”