Staying Active Is Vital for People with Pain

By Joanne Dickson, Edith Cowan University

Chronic pain affects around one in five people and is considered “chronic” when it persists beyond the expected healing time, typically three months or longer.

Along with physical problems, chronic pain can impact a person’s daily activities, employment, lifestyle and mental health.

Doing things you love and having goals are fundamental for wellbeing because they give meaning and purpose. But pain can make doing the activities you enjoy psychologically, physically and/or emotionally very challenging.

Our new research shows the way a person with chronic pain responds to not being able to participate in the activities or goals they value can impact their mental wellbeing – even more so than their pain levels.

We surveyed more than 300 people living chronic pain (that wasn’t related to cancer) about their mental wellbeing, “pain intensity” and how much pain interfered with the everyday pursuits and activities that mattered to them. We differentiated chronic pain from cancer pain due to the differing prognoses and treatments available, and the unique psychological and social factors associated with cancer pain, such as concern about death.

We found pain that disrupted daily life activities, rather than the intensity of the pain, posed the biggest threat to a person’s mental wellbeing.

When pain interferes with a person’s engagement in meaningful daily activities, it causes distress and decreases wellbeing.

The research suggests it’s possible for people to find ways to maintain their mental wellbeing, even when their pain intensity is high, so long as they’re able to maintain aspects of life that are important to them, such as relationships and work.

Find Other Ways to Do Things

We found personal motivational traits – specifically, goal flexibility (adjusting goals in response to changing circumstances and setbacks) and tenacity (persistently striving to achieve a desired goal under difficult circumstances) – were associated with increases in mental wellbeing for people living with chronic pain.

Although flexibility and persistence were both associated with increased mental wellbeing, the capacity to flexibly adjust to setbacks or obstacles had the most significant positive effect in maintaining one’s mental wellbeing.

Flexibility appears to act as a protective factor against the impacts of pain interference on mental wellbeing, to a greater extent than personal tenacity or persistence.

There is often more than one way to modify or adapt an activity when difficulties arise. A walk on the beach with friends, for instance, may be adjusted to meeting at the beach for coffee to fulfil the same goal or value: social connectedness.

Focus on What You Can Do, Not What You Can’t

Psychological processes that can help people to live well in the face of long-term pain have long been overlooked. Research has traditionally focused on unhelpful thought processes that perpetuate or exacerbate mental distress. For example, pain catastrophising and repeated negative self-criticism.

Pain management and mental health are multi-faceted. Previous research has shown pain management should take into account physical factors (age, sleep, injury, disease) and social factors (employment, social support, economic factors).

Our findings add to this body of knowledge. For those living with pain, reappraising and adjusting meaningful life activities and goals, when needed, in response to setbacks or life challenges can help maintain mental wellbeing.

These findings can inform the development of psychological supports for people with chronic pain. In turn, these supports could identify internal strengths, resources, positive coping strategies, self-efficacy, hope and wellbeing – and promote psychological strengths rather than deficits.

Joanne Dickson, PhD, is a Professor of Psychology & Mental Health at Edith Cowan University in Australia. Joanne’s main research interests are in the areas of goal-motivation, prospective cognition and emotion-regulation processes in mental health and well-being. She collaborates with national and international researchers in Australia, the UK and USA.  

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

How to Live Longer and Healthier with Chronic Illness

By Barby Ingle, PNN Columnist

Have you ever wondered what living with chronic illness or a rare disease does to your lifespan? I have.

My primary care doctor recently conducted a seminar about living longer and healthier. He gave the attendees a great resource: a “health span” guide that outlines five ways to enhance your day-to-day life and live longer. The guide got me thinking. As a person with rare diseases and chronic pain, can they help me achieve my goal of living to 100 years old? 

Step 1 of the guide is to eat a Mediterranean-style diet. Studies show that people who eat a diet rich in fruits, vegetables, fish, whole grains, nuts and legumes live longer and have fewer instances of type 2 diabetes, obesity, heart disease and cancer.

I believe in individualized care for my health. As I have talked about in the past, I did microbiome testing to assess my gut health, using an at-home test made by a company called Viome. The results I received revealed that many of the fruits, veggies and nuts that I loved were not suitable for me because of my genetics. My DNA would rather have me eat a rack of lamb than a tomato!

I think getting that kind of detailed, personalized health information is better than following a one-size-fits-all diet.

Step 2 of the health span guide is to exercise often. It states that people who exercise between 2.6 and 4.5 hours per week have a 40% lower risk of dying. 

I have found that exercise means different things to different people. When I was younger, I was an athlete. Today, I cannot imagine doing a simple jumping jack. Nevertheless, moving as best we can each day, without going into a pain flare, sounds reasonable. That is what I strive to achieve.

I try to do what I can physically and not get too down on myself for the fatigue, pain and times when my body is dystonic. I hope that will be enough “exercise” to reduce the risk of other chronic illnesses, such as diabetes or dementia. I know people who have diabetes who were able to exercise, change their eating habits, and live longer. But my father, ten years after being diagnosed, still passed away early. 

Step 3 of the guide is to manage your stress and mental health. Those of us with rare and chronic conditions often have increased anxiety. Who wouldn’t be depressed learning how to live with a new normal? Chronic stress reduces life span and ages us faster from the chemicals and bodily changes that occur.

Step 4 of the guide is to make good sleep a habit, which is not easy when you have chronic pain. But a night with 7 or 8 hours of restful sleep can help reduce pain levels and lead to a better, more productive tomorrow.

When our sleep is disturbed long-term, it can affect our mood, organ function and contribute to an early death. I remember back in 2009, before I began infusion therapy, I tried many recommendations for better sleep, such as a warm drink before bedtime, having a set time to go to bed and wake up, and cutting out caffeine. After the infusions, when my pain was better managed, I realized just how bad my sleeping was and how much I needed 8 hours of sleep. Here are some tips for better sleep from the CDC.  

Step 5 of the guide is to build strong social circles. Having at least six different social connections each month has been associated with better health. I have found that people who are not chronically ill have difficulty understanding why we don't get better. They make comments like, "Are you still sick?" and "You’re still not feeling better yet?”

It is sad that it is harder for us to make and keep friends who are healthy and happy. A network of friends is essential for many reasons. This New York Times article on “How to Be a Better Friend” has some tips on how to improve our connections with others. 

I want to live longer and healthier, and to work towards it with good connections, preventative care and palliative care. We live in a great time when medical care and genetic testing are advancing, helping us live healthier. Being in the best shape possible to live past our potential expiration dates will help us enjoy our limited time here on earth. It all goes back to being the best you, so that you can fulfill your earthly purpose while participating in society. 

Living longer comes from individualized care and making the most of each aspect of your life. Changing how you live, respond, and act today can make your life longer and more meaningful.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com 

Why Healing Is Just as Important as Relieving Pain

By Dr. Forest Tennant, PNN Columnist

We all want to take a pill and have our pain lessen or go away, even for a moment. That is human nature. However, we must also take steps to promote healing of our damaged tissues, which over time will have a more lasting effect in reducing the severity of pain. 

There is a difference between symptomatic and healing treatment. Both are necessary to have an effective treatment program. Symptomatic treatment only relieves pain temporarily.  

We regularly hear from persons with adhesive arachnoiditis (AA) who can’t understand why their disease is progressing and why they are deteriorating. The stimulus for this topic was a man with AA who has an implanted morphine pump and an implanted electrical stimulator in the calf of his leg. He takes 15 mg of oral morphine three times a day, as well as gabapentin (Neurontin). 

He did not use a single “healing measure” and had gained so much weight he was now a diabetic. Despite his treatment, which carried a price tag of about a quarter of a million dollars, he wondered why he was deteriorating.

Every disease with the moniker “itis” — including arachnoiditis — is caused by an inflammatory and/or autoimmune process.  This simply means that your painful, damaged tissue is under constant attack. You must either diligently and persistently fight back – every day -- with healing measures or you will deteriorate and die before your time.

Examples of Symptomatic Treatment 

• Analgesics: opioids, benzodiazepines, gabapentin, pregabalin, antidepressants

• Implanted Stimulators

• Implanted Pumps

Examples of Healing Measures

• Protein

• Walking

• Water Soaking

• Weightlifting

• Oxygenation

• Stretching

• Amino Acids/Peptides

• Collagen

• Hormones

• Vitamins

• Anti-inflammatories

• Electromagnetics

It is human nature to desire fast, immediate relief from pain. You must, however, start healing measures at the same time you begin symptomatic pain relief, so damaged tissues won’t deteriorate further and pain won’t increase.

A major problem is misleading advertising of expensive treatments such as implanted electrical stimulators and pain relieving drugs that lead a person into thinking the treatment has healing properties when it only provides temporary, symptomatic pain relief.

That’s why it is so important to follow our 3-component medical treatment protocol to relieve pain, suppress inflammation and autoimmunity, and heal damaged 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 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.  

Yoga Can Help Manage Chronic Illness, Including Pain

By Herpreet Thind, University of Massachusetts Lowell

The popularity of yoga has grown tremendously in the past decade. More than 10% of U.S. adults have practiced yoga at some point in their lives. Yoga practitioners spend on average US$90 a month, and the yoga industry is worth more than $80 billion worldwide.

Yoga is now a mainstream activity in the U.S. and is commonly portrayed as a healthy lifestyle choice. I am a behavioral scientist who researches how physical activity – and specifically yoga – can prevent and help manage chronic diseases.

Many people attribute improvements in their physical and mental health to their yoga practice. But until recently, research had been sparse on the health benefits of yoga. As the body of rigorous research on yoga grows, more and more work is showing the many health benefits of a yoga practice. 

‘Stilling the Mind’

The name “yoga” is derived from the Sanskrit word “Yuj” meaning to unite, join or connect the mind, body and soul. The first text on yoga was written by the sage Patanjali over 2,000 years ago in India. Patanjali described yoga as “citta-vrtti-nirodhah,” or “stilling the mind.” This was achieved through a mix of breath work, meditation, physical movement and body purification practices, as well as ethical and moral codes for living a healthy and purposeful life.

Over the years, various yoga teachers have modified the original Patanjali yoga, resulting in different styles that vary in their intensity and focus. For example, some yoga styles such as Vinyasa focus more on intense movements similar to an aerobic workout. Restorative yoga includes more relaxation poses. Iyengar yoga uses props and emphasizes precision and proper alignment of body. These different styles provide options for individuals with different physical abilities.

Generally speaking, yoga instructors in the U.S. today teach styles that incorporate postures, breathing exercises and sometimes meditation.

Physical and Mental Health Benefits 

As yoga has grown in popularity in recent years, researchers have begun to study its effects and are finding that it has great benefit for mental and physical health.

Yoga involves physical movement, so it is no surprise that most types of yoga can help to improve a person’s strength and flexibility. In one study with healthy untrained volunteers, researchers found that eight weeks of yoga improved muscular strength at the elbow and knee by 10%-30%. Flexibility at the ankle, shoulder and hip joints also increased by 13%-188%.

There are a number of less obvious but meaningful benefits from yoga as well. Research has shown that yoga practice can reduce risk factors for heart disease such as high blood pressure, high cholesterol and abdominal obesity. Studies on older adults have shown significant improvements in balance, mobility, cognitive function and overall quality of life.

Yoga seems to be effective at managing pain, too. Research has found that yoga can improve symptoms of headaches, osteoarthritis, neck pain and low-back pain. In fact, the American College of Physicians recommends yoga as one of the options for initial nonpharmaceutical treatment for chronic low-back pain.

Yoga also provides many benefits for mental health. Researchers have found that a regular practice over eight to 12 weeks can lead to moderate reductions in anxiety and depressive symptoms as well as help with stress management.

Exercise With Mindfulness

Yoga is a type of exercise in that it is a form of physical exertion that helps build fitness. A lot of the benefits researchers have found are due to the physical activity component and are similar to benefits from other forms of exercise like running, weightlifting or calisthenics.

But unlike these other activities, yoga practice incorporates mindfulness as a key aspect. With its focus on controlling breath, holding postures and meditation, yoga increases how much a person pays attention to the sensations of their body and the present moment. This mindfulness leads to many benefits not found from other forms of exercise.

Studies have shown that mindfulness training on its own can increase a person’s self-awareness, along with the ability to recognize and skillfully respond to emotional stress. It can even give a person greater control over long-term behavior. One study found that increased mindfulness from yoga can help people better recognize and respond to feelings of being full when eating, decrease binge eating and alleviate concerns over how their body looks.

My colleagues and I observed a similar effect in a pilot study on the benefits of yoga for individuals with Type 2 diabetes. After doing yoga twice a week for three months, several participants reported paying more attention to their diet, snacking less and eating healthier, even without any nutrition intervention. Our patients also reported less stress and an increased willingness to engage in other types of physical activities.

Yoga is clearly different from Western exercise in how it approaches mental health. With more research, it may be possible to understand the biological mechanisms as well.

Before You Start

Yoga may not be helpful for all medical conditions or right for every person, but people of all age groups, body types and physical abilities can practice yoga. It can be a form of mental and physical exercise for people who do not enjoy sweating during strenuous forms of exercise or for individuals with medical or physical conditions who find working out in the gym challenging.

It is important to consider that although yoga is generally safe, just as with any other form of exercise, there is some risk of getting injured. Individuals with medical conditions who are new to yoga should practice it initially under the supervision of a trained instructor.

If you do decide to give yoga a try, talk to the yoga instructor first to assess whether the style they offer meets your preference and fitness levels. Remember, you may need to practice a couple of weeks to feel the benefits, physically and mentally.

Herpreet Thind, PhD, is an Associate Professor of Public Health at University of Massachusetts Lowell. Her research interests include physical activity and yoga interventions for chronic disease prevention and control. She has received funding from the National Institutes of Health to examine the feasibility of yoga for adults with type 2 diabetes.

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

A Third of Chronic Pain Sufferers Used Cannabis for Pain Relief

By Pat Anson, PNN Editor

Nearly a third of U.S. adults (31%) with chronic pain have used cannabis as an analgesic, according to a new survey that found over half of those who used cannabis said it enabled them to decrease their use of opioid medication and other pain therapies.

The survey findings, published JAMA Network Open, involved 1,724 people with chronic non-cancer pain who live in the 36 states (and Washington DC) that have legalized medical marijuana.

Unlike other studies that only focused on cannabis reducing opioid use, this survey found that over half of pain sufferers using cannabis also reduced or stop using non-opioid prescription pain relievers and over-the-counter analgesics. Many respondents also reported decreasing their use of physical therapy (39%), cognitive behavioral therapy (26%) and meditation (19%).  

“Most persons who used cannabis as a treatment for chronic pain reported substituting cannabis in place of other pain medications including prescription opioids,” wrote lead author Mark Bicket, MD, an Assistant Professor in the Department of Anesthesiology, University of Michigan School of Medicine.

“The high degree of substitution of cannabis with both opioid and nonopioid treatment emphasizes the importance of research to clarify the effectiveness and potential adverse consequences of cannabis for chronic pain. Our results suggest that state cannabis laws have enabled access to cannabis as an analgesic treatment despite knowledge gaps in use as a medical treatment for pain.”

The survey did not ask whether respondents smoked, vaped or ingested cannabis products, so there’s no way to tell which method was more effective at reducing pain. Nevertheless, it adds to a growing body of evidence that cannabis reduces pain and helps pain sufferers decrease their use of medications and other therapies.  

“Cannabis has established efficacy in the treatment of multiple conditions, including chronic pain, and it possesses a safety profile that is either comparable or superior to other controlled substances,” said Paul Armentano, Deputy Director of NORML, a marijuana advocacy group.

“So it is no wonder that those with legal access to it are substituting cannabis in lieu of other, potentially less effective and more harmful substances. As legal access continues to expand, one would expect the cannabis substitution effect to grow even more pronounced in the future.”

Several previous studies have also found that cannabis users often reduce their use of prescription opioids. A large survey conducted last year found that most medical marijuana users either stopped (42%) or reduced (37%) their use of opioids. A small number were also able to stop using psychiatric medications for anxiety, depression and PTSD.  

Another recent study at Cornell University found that legalization of recreational marijuana in 11 states led to significantly reduced prescribing for Medicaid patients for a broad range of medications used to treat pain, depression, anxiety, seizures and other health conditions.

A 2021 Harris Poll found that twice as many Americans are using cannabis or CBD to manage their pain than opioids.

FDA Approves Smallest Rechargeable Spinal Cord Stimulator

By Pat Anson, PNN Editor

The Food and Drug Administration has approved a new spinal cord stimulator that’s being touted as the smallest implantable neuromodulation device of its kind on the market. Abbott’s Eterna stimulator can also be recharged wirelessly as few as five times a year, unlike other stimulators that need recharging daily or weekly.

Spinal cord stimulators (SCSs) are an invasive treatment of last resort for people with chronic back or leg pain. The devices are surgically implanted near the spine and connected to batteries placed under the skin. The implants send low-level electrical impulses into the spine to block pain signals.

Abbott says it developed Eterna after extensive studies with pain patients and healthcare providers, who wanted a smaller implant with less need for recharging.

Eterna utilizes the company’s BurstDR stimulation, which mimics the natural firing patterns of nerves to provide pain relief without the tingling sensation of other simulators.

"Abbott's low-dose BurstDR stimulation is clinically proven to reduce pain, improve people's ability to perform everyday activities, and reduce emotional suffering associated with pain," Timothy Deer, MD, president and CEO of the Spine and Nerve Centers of the Virginias, said in a statement provided by Abbott.

ABBOTT IMAGE

"Until now, it wasn't available on a rechargeable device that was this small, and that only needs to be charged a few times a year. This makes a big difference in comfort for many patients who now can have access to the best of both worlds – a small, best-in-class rechargeable device with superior stimulation therapy."

Another advantage of the Eterna SCS system is that patients with the device can still have full-body MRI scans – a critical need for those who need access advanced imaging and diagnostics. The devices can also been monitored and programmed with a mobile app.

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

A recent study found that premise to be untrue. Researchers at the University of California San Francisco School of Medicine found that pain patients with stimulators did not reduce their use of opioids, epidurals, corticosteroid injections or radiofrequency ablation compared to a control group. About a fifth of the patients experienced complications so severe the devices had to be removed or revised.

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

SCS’s are no longer limited to patients with intractable back and neck pain. Last year the FDA expanded the use of stimulators to include lower limb pain from diabetic neuropathy.  Stimulators are also being used on patients with Complex Regional Pain Syndrome (CRPS).

Sickle Cell Patients Make Difficult Choices About Fertility

By Farah Yousry, Kaiser Health News  

Teonna Woolford has always wanted six kids. Why six?

“I don’t know where that number came from. I just felt like four wasn’t enough,” said Woolford, a Baltimore resident. “Six is a good number.”

Woolford, 31, was born with sickle cell disease. The genetic disorder causes blood cells to become misshapen, which makes it harder for blood to carry oxygen and flow throughout the body. This can lead to strokes, organ damage, and frequent bouts of excruciating pain.

Sickle cell disease affects an estimated 100,000 people in the U.S., and the vast majority of them are Black. Federal and charitable dollars dedicated to fighting sickle cell disease pale in comparison to what is spent to combat other, less common diseases that mostly affect white patients.

Physicians and researchers said the disease is a stark example of the health inequities that pervade the U.S. health system. A poignant expression of this, patient advocates said, is the silence around the impact that sickle cell disease has on fertility and the lack of reproductive and sexual health care for the young people living with the complex disease.

Woolford’s sickle cell complications have run the gamut. By the time she was 15, her hip joints had become so damaged that she had to have both hips replaced. She depended on frequent blood transfusions to reduce pain episodes and vascular damage, and her liver was failing.

“So many complications, infections, hospitalizations, and so by the time I graduated high school, I just felt defeated [and] depressed,” said Woolford, speaking from a hospital bed in Baltimore.

She had experienced a sickle cell pain crisis a few days earlier and was receiving pain medication and intravenous fluids.

In her late teens, Woolford sought out a bone marrow transplant, a treatment that enables the sickle-shaped cells in the patient’s body to be replaced with healthy cells from a stem cell donor. The procedure comes with risks, and not everyone is eligible. It also relies on finding a compatible donor. But if it works, it can free a person from sickle cell disease forever.

Teonna Woolford

‘You’re Probably Already Infertile’

Woolford couldn’t find a perfect match, so she enrolled in a clinical trial in which doctors could use a “half-matched” donor. As part of the bone marrow transplant, patients first receive chemotherapy, which can impair or eliminate fertility. Woolford hesitated. After all, her ideal family included six children.

When she told her doctor about her worry, his response crushed her: “This doctor, he looked at me, and he was like, ‘Well, I’ll be honest, with all the complications you’ve already had from sickle cell, I don’t know why you’re even worried about this process making you infertile because you’re probably already infertile.’”

Even if patients don’t have the transplant, sickle cell disease can damage their bodies in ways that can affect their ability to have children, according to Dr. Leena Nahata, a pediatric endocrinologist at Nationwide Children’s Hospital in Ohio.

For women, chronic inflammation and the sickling of blood cells in the ovaries can make getting pregnant harder. For men, sickled blood can jam inside the blood vessels of the penis, causing painful, unwanted erections that last for hours. This condition, called priapism, can damage sexual function and decrease sperm count. And it’s not just the disease. Researchers are evaluating how some widely used treatments may affect fertility — for example, by decreasing sperm count.

“It remains unclear how that translates directly to fertility outcomes but at least raises the concern that this may be an issue,” Nahata said. Even more concerning to Nahata were the results of a small study, which she co-authored, that showed some patients were unaware of the many fertility risks related to sickle cell disease.

Woolford said she was 19 and shocked when her doctor told her she was probably already infertile. But no one could be sure, so she held out hope that she might still undergo a procedure to preserve her fertility before having the chemotherapy required for the bone marrow transplant.

From extensive research, she learned that egg freezing could cost more than $10,000 and that her insurance wouldn’t cover it. She couldn’t afford to do it on her own. Woolford wondered whether she could find another way to pay for egg freezing. “So I started looking into financial resources,” she said. “And I saw all these foundations [that] give away grants. But you had to have a diagnosis of cancer.”

In the end, Woolford had the transplant without freezing her eggs. She said she felt that being cured would “be a fair trade-off to give up my dream of biological children.”

Unfortunately, the partial-match transplant did not work. Woolford’s body rejected it.

“So, here I am,” she said. “I am 30, still have sickle cell disease, and I’m infertile.”

Fertility Preservation and Reproductive Justice

A grim thought sometimes pops into Woolford’s mind: If she had cancer instead of sickle cell disease, her dreams of having biological children might still come true.

The first description of sickle cell disease in medical literature was published over a century ago. Because most sickle cell patients in the U.S. were Black, it quickly became labeled as a “Black disease.” And with that came a legacy of systemic racism that still affects patients today.

Black patients tend to have less social capital and fewer resources, said Dr. Lydia Pecker, a sickle cell disease researcher and an assistant professor of medicine at Johns Hopkins University. For fertility treatment, the resources available to cancer patients differ starkly from those available to sickle cell patients.

“There are any number of foundations, large and small, that help support and pay for fertility preservation for people with cancer,” Pecker said. “Those foundations actually work with fertility preservation centers to negotiate lower rates for affected people.”

Clear clinical guidelines state that children who have cancer and are going through chemotherapy should be referred for fertility preservation. Children with sickle cell disease going through transplants are exposed to chemotherapy, too, “but we don’t really have guidelines like that yet for people with sickle cell disease,” Pecker said.

It’s not a perfect comparison, she added, because the kinds of chemotherapy drugs used in pediatric cancer are different from the chemotherapies used in sickle cell treatment. But fertility preservation can be crucial when there is any risk of treatment-associated fertility impairment, Pecker said. Without clear and widely adopted clinical guidelines, sickle cell patients may not be referred to appropriate care.

Pecker said current medical practice forces sickle cell patients to make a difficult choice. “You can have treatment or you can have fertility,” she said. But in cancer care, she said, the thought is: You can have treatment and you can have fertility.

In the U.S., health insurance coverage for fertility preservation and treatment is not guaranteed and varies from state to state. Only 12 states have laws that mandate fertility preservation coverage for patients who undergo treatments that could imperil their ability to have biological children — usually referred to as iatrogenic treatments — like chemotherapy or radiation.

After Woolford’s transplant failed, the disease continued its assault on her body. And Woolford has had to come to terms with the impossibility of ever having a biological child. She launched a nonprofit, the Sickle Cell Reproductive Health Education Directive, to raise awareness of fertility issues at medical conferences and among patients. A future goal is to provide financial grants to sickle cell patients struggling to pay for fertility preservation and treatments.

Most days, Woolford finds the work empowering. On other days, she admitted, it reminds her of the bleak reality that she will probably never conceive a child.

“It’s really hard because I don’t think a lot of people realize that I’m fighting for something that I didn’t have access to,” she said.

At this point, she said, it’s no longer a medical justice fight. It’s a reproductive justice one.

Reporting for this story was supported by the USC Annenberg Center for Health Journalism’s Impact Fund for Reporting on Health Equity and Health Systems. It was produced in partnership with Side Effects Public Media, WFYI, and Kaiser Health News.

Steroid Injections May Worsen Knee Arthritis

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Spinal Cord Stimulators Fail to Reduce Opioid Use

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

‘Sobering Insights’

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

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

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

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

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

By Pat Anson, PNN Editor

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

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

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

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

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

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

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

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

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

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

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

FDA Warns Amazon and Walmart About Selling Misbranded Drugs

By Pat Anson, PNN Editor

The U.S. Food and Drug Administration has issued another warning to consumers not to purchase or use dietary supplements marketed for pain relief under the brand names “Artri” or “Ortiga” due to potentially dangerous pharmaceutical ingredients. Use of the products has led to liver toxicity and at least one death, according to the agency.

The FDA issued its first first warning about the supplements in January and followed up with a second warning  in April. The latest warning includes Amazon, Walmart and another retailer that continued to sell the supplements, which are marketed with claims that they treat arthritis and osteoarthritis, restore cartilage, and stop joint deterioration.

In a warning letter sent to Amazon last week, the FDA said it had purchased Artri and Ortiga supplements through its website and had them delivered through the company’s delivery service.

Laboratory testing confirmed the supplements purchased through Amazon contained diclofenac, a non-steroidal anti-inflammatory drug (NSAID), and dexamethasone, a corticosteroid used to treat inflammatory conditions.

Neither drug is mentioned on product labels, which list ingredients such as glucosamine and turmeric. The FDA warned Amazon that introducing or delivering a misbranded drug is a violation of federal law.  

“Failure to adequately address this matter may result in legal action including, without limitation, seizure and/or injunction. Please submit a written response to this letter within fifteen working days from the date of receipt, explaining the specific steps you have taken to address any violations,” the FDA letter states.

Similar warning letters were sent to Walmart and Latin Foods Market, which had previously issued voluntary recalls for the supplements, but still continued to sell them.

It appears the Artri and Ortiga supplements have now been removed from the websites of all three companies. The supplements were being marketed primarily to Spanish-speaking consumers, with claims they are “highly effective in restoring cartilage” and “fights arthritis.”  

Diclofenac raises the risk of cardiovascular events, such as heart attack and stroke, as well as serious gastrointestinal bleeding and damage. When used long term or in high doses, dexamethasone and other corticosteroids can result in serious withdrawal symptoms if a consumer suddenly stops taking them. Both drugs can also interact with other medications.

The FDA encourages healthcare providers and patients to report side effects involving use of the products to its Adverse Event Reporting System. .

Green Eyeglasses Improve Anxiety and Wellness in Fibromyalgia Patients

By Pat Anson, PNN Editor

Fibromyalgia is well known as one of the most difficult chronic pain conditions to treat. The Food and Drug Administration has approved a handful of medications for fibromyalgia, but many patients find them ineffective in treating the muscles aches, joint pain, fatigue, anxiety and other symptoms that are common in fibromyalgia.  

Researchers at Duke University may have found an easy way to reduce some of those symptoms without the use of drugs. In a small study of fibromyalgia patients being treated with opioids, those who wore eyeglasses with specially tinted green lenses reported a significant improvement in their anxiety and overall sense of wellness. And while their pain levels were unchanged, their use of opioids declined.

“My research has been focused heavily on finding alternatives to opioids for pain management,” says lead author Padma Gulur, MD, Executive Vice Chair of the Department of Anesthesiology at Duke University. “One of the things we discovered early on was that there were visually mediated triggers for pain. We definitely could see that with headaches, but also that it could actually impact pain itself, the pain pathways. While we still don’t fully understand the mechanism of how pathways for pain get activated with visual mediation, it definitely does happen.

“We narrowed it down over some years to the hypothesis that with green light, particularly in the green spectrum, there was an opportunity where it was influencing pain, both chronic pain and acute pain.”

Previous research has found that green light therapy has a calming effect on the brain and is useful in treating fibromyalgia and migraines. But in those studies, participants were confined to a room where they were immersed in green light and told to avoid activities like watching TV or using their cellphones.

Gulur thought there must be an easier way to experience the benefits of green light.

“People want pain relief, but they also want to live their lives. And spending hours and hours in a room or exposure takes away from that quality of life,” she told PNN. “On the other hand, wearing eyeglasses is something we’re all very comfortable doing and, thankfully these days, colored eyeglasses are all the thing.”

Gulur and her colleagues studied 34 fibromyalgia patients who were randomly selected to wear various shades of eyeglasses at least four hours a day for two weeks: 10 patients wore blue eyeglasses, 12 wore clear eyeglasses and 12 wore green eyeglasses.

DUKE UNIVERSITY

Their findings, presented this week at the annual meeting of the American Society of Anesthesiologists, showed that participants who wore green eyeglasses were four times more likely to have reduced anxiety than those in the other two groups, who reported no reduction in anxiety. They also reported feeling better.

“We found that although their pain scores remained the same, those who wore the green eyeglasses used fewer opioids, demonstrating that their pain was adequately controlled,” said Gulur, who noted that patients who wore the green eyeglasses asked if they could keep them at the end of the study.

“They didn’t want to give them back. We had no trouble getting the blue and the clear back, but none of them wanted to return the green glasses.”

Unfortunately, they had to give them back. The eyeglasses are specially formulated to filter a specific wavelength on the green light spectrum and were needed for further study. You can’t buy the glasses online or at your local drug store. At least not yet.

Gulur and her team are planning further studies with green eyeglasses on patients with diabetic neuropathy and chronic back pain.

Thinking Outside the Pill Box: Another Approach to Pain Management

By Alon Ironi, CEO, Theranica Bio-Electronics

Well into my adulthood, I struggled with chronic back pain. I took medication after medication, finding myself getting sucked into the habit of popping painkillers and wondering why my pain wasn’t healing. I eventually discovered the psychological and mental elements inherent in chronic pain, and shifted my approach to pain management, which rapidly cured my back pain.  

The holistic approach to healing pain has historically been ridiculed in the medical community, preventing many physicians from recognizing the legitimacy of alternative treatments. The time has come to evolve beyond just popping pills to treat pain, towards a biopsychosocial perspective.  

The discovery and introduction of penicillin in 1928, marked the very beginning of medication popularization in the West. The development of new medications – for a wide range of uses - has extended life span and improved quality of life.  Unfortunately, the benefits associated with medication have encouraged its frequent use for disorders it simply is not meant for, such as certain types of chronic pain.  

Medication overuse headache is one example where drugs intended to treat migraine and headache can, with excessive use, lead to the deterioration of the exact condition they are supposed to be treating. Medication is an incredible tool when used properly, but it’s not the only tool, and it can be seriously harmful when misapplied.

What is Pain and How Do We Treat It? 

Pain is a unique bodily experience that, unlike other disorders, indicates an underlying issue in one’s physiology. Pain is an alarm system. It tells us that something is wrong, and if we mask it without treating its underlying cause, we might cause a great disservice to our bodies.  

The use of medication to treat short-term acute pain, while a person simultaneously heals from the cause of that pain, like a pulled muscle or a tear in a tissue, makes sense. However, the use of medication in instances of chronic pain - pain that persists longer than three months - is problematic.  

Chronic pain is a debilitating condition that impacts an individual’s everyday life. From migraine to chronic knee pain to chronic back pain, the routine of normal life is disrupted. Often, this chronic pain had an initial cause, such as a surgery, fall or injury that has since healed, but the pain persists long after its source has disappeared. This type of pain, as Haider Warraich, a physician and clinical researcher at Harvard, so aptly puts it, is like “an overlearned traumatic memory that keeps ricocheting around in our brains, often long after the injury it rehearses has fully healed.” 

This perception of chronic pain has its roots in quite a controversial physician -the late Jon Sarno, MD, a professor of rehabilitation medicine in the 1980’s and 90’s. His theories, while not rigorously proven in formal clinical studies, were built upon anecdotal data from thousands of patients he treated during his lifetime and are still being explored today. They have jumpstarted a revolution in our understanding of pain.  

The biopsychosocial model focuses on illness as a complex interaction of chemical and electrical reactions that are induced by biological, psychological and social factors. Contemporary pain researchers, like Lorimer Mosely, a clinical scientist, have applied this model to pain, recognizing that pain is comprised of both physical sensation and emotional stimulus, such as the fear of pain itself.  

Pain is no longer perceived as entirely “physical” in nature. It is now understood to be exacerbated by the fear of tissue damage and the aversion to previously experienced pain. As clinical research develops and shifts its focus to a more biopsychosocial approach to illness and pain, doctors must re-evaluate their first-line treatment suggestions. 

Drug-Free Pain Management 

Based on this new perception of pain, several nonpharmacological treatment methods for pain management have been developed. One approach is a purely psychological treatment called cognitive behavioral therapy, a form of talk therapy that discourages negative thoughts associated with pain and trains people to adhere to thoughts that stimulate the body’s natural pain relief system. Another example of nonpharmacological pain treatment is massage therapy,  which addresses pain by releasing muscle tension.  

Neuromodulation is highly effective in treating certain pain disorders through the use of electrical stimulation to modulate pain pathways in the neural system.  Several forms of neuromodulation treatment exist today, with different mechanisms of action and efficacy.  

Spinal cord stimulation, for example, is used to treat back pain and leg pain. But it is highly invasive, with electrodes surgically placed near the spinal cord to send electrical currents to the spine.

Deep brain stimulation is being studied for the relief of chronic pain, but it is also quite invasive, as it involves implanting electrodes into the brain.  

Nerivio is a non-invasive, wearable neuromodulation device made by my company that is FDA-approved for the treatment of acute migraine. Nerivio is self-applied to the upper arm, where it uses remote electrical neuromodulation (REN) to stimulate analgesic neurotransmitters in the pain pathways of migraine. In clinical trials, Nerivio and other REN devices have been shown to be just as effective as pharmacological treatments.  

To be clear, medication is a necessary and beneficial tool for treating infections, reducing fever, managing sickness and much more. However, its use in chronic pain management is sometimes misplaced, especially at a time when newer non-drug therapies are emerging.  

The holistic approach to pain management is the future. It considers the balance and context of a patient’s life and combines multiple modalities for their treatment. People are multifaceted and their treatment should be multifaceted as well. It is my hope and vision that this field of research will continue to develop and will soon be widely embraced by most medical professionals.  

Having experienced the benefits of drug-free pain management first-hand, I truly hope that health care systems will support patients in accessing these much-needed alternative treatments to improve quality of care and life.  

Alon Ironi is the CEO and co-founder of Theranica Bio-Electronics, the developer of Nerivio.

Alon received a Master of Science in Electrical Engineering from Santa Clara University, and a Bachelor’s of Science in Electrical Engineering from the Technion- Israel Institute of Technology.

FDA Approves Device That Uses Artificial Intelligence to Treat Chronic Pain

By Pat Anson, PNN Editor

The Nevro Corporation says it has won approval from the Food and Drug Administration for an advanced spinal cord stimulator (SCS) that uses artificial intelligence to individualize treatment for each patient.

Nevro says its Senza HFX iQ stimulator “learns from patients” as they use the device and develops customized algorithms for treating chronic back pain, leg pain and pain from diabetic neuropathy.

"HFX iQ is designed to improve the consistency of pain relief and is the only SCS system that truly personalizes care," D. Keith Grossman, Chair and CEO of Nevro, said in news release.

"Pain is variable from patient to patient and over time. Using the big data from our HFX Cloud patient database, our unique HFX Algorithm was developed to identify those programs where patients have been more likely to get relief in the real world.  HFX iQ takes direct input from each patient on their pain and quality of life measures to get smarter over time and recommend program changes.”

Nevro says patients will start with a program most likely to provide pain relief, and then adjusts it over time based on patient input and medical data, such as pain scores, activity levels and changes in use of pain medication. Patients can also adjust their pain relief programs through an app on their smartphones.

Spinal cord stimulators are usually considered the treatment of last resort for people with intractable or severe chronic pain that doesn’t respond to other therapies. The surgically implanted devices emit low levels of electricity that reduce the intensity of pain signals.

Unlike older stimulators, Senza stimulators use electric pulses of 10 kHz, a high frequency that doesn’t create an uncomfortable tingling sensation and delivers more pain relief. Last year the FDA approved Senza stimulators for the treatment of painful diabetic neuropathy, making it the first spinal cord stimulation system approved for that condition. Until then, most SCS devices were only approved for patients with severe back pain.

About 50,000 stimulators are implanted in the U.S. every year, with failure rates for the devices estimated at 25 to 30 percent. Most patients are required to undergo psychological testing and a trial treatment before getting a SCS.

The FDA has come under scrutiny for its regulation of stimulators and other medical devices.  A 2020 report by Public Citizen accused the FDA of “dangerously lax” oversight of stimulators, which were linked to 156,000 injuries and 931 deaths.  The agency responded to the report by sending a letter to healthcare providers reminding them to only implant stimulators after a trial period that demonstrates the device are effective. An FDA review of adverse events involving stimulators found that nearly a third were reports of unsatisfactory pain relief.

Nevro says it will begin a limited release of Senza HFX iQ later this year, with a full market launch in the U.S. in early 2023. Nevro is also seeking approval of HFX iQ in Europe.  

Justin Brown: A CRPS Story of Hope

By Miles Ryan Fisher

When Justin Brown took his first steps at the age of 40, his parents were overcome with joy. Only, it wasn’t the same joy that they’d experienced when he’d taken his first baby steps.  No, this joy came with great pain — the kind of pain that comes with watching one’s child lose nearly half his life to a debilitating condition called Complex Regional Pain Syndrome, also known as “the suicide disease.”

In 2006, just as Justin prepared to enter the working world as a Penn State graduate, he started losing weight. He began regurgitating his meals, vomiting most of whatever he ate. Over time, he grew gaunt. His face sunk and his cheekbones protruded. His skin wrapped around his body until he looked emaciated.

Doctors didn’t have answers. When Justin reached the point that he couldn’t hold down any food, they inserted a J-tube — a feeding tube — in him so that food could bypass his stomach. But it wasn’t his stomach that was the problem. It was the parasite they hadn’t tested for — the one dwelling in his intestine right where the tube was inserted. When they removed the J-tube, they accidentally left a part of it in him.

When Justin awoke from surgery, he awoke to something even more unbearable. Something hellish. The operation triggered a pain that spread through his entire body and left him incapacitated, even after the parasite and tube remnant were removed. At the age of 26, Justin no longer had the strength to walk, not even to the bathroom.

Since 2007, he lay in a hospital bed in the middle of his parents’ living room in Fort Washington, Pennsylvania, his arms at his sides, his head always facing the same direction. In order to subdue the pain that incapacitates him, Justin takes a daily mixture of heavy pain medication, including narcotics.

It took many years until Justin and his family found a doctor who offered an accurate diagnosis: Complex Regional Pain Syndrome or CRPS. Only, the doctor didn’t call it that. Back then, the condition was known as Reflex Sympathetic Dystrophy or RSD.  

CRPS/RSD happens when an injury — as minor as a broken finger or as major as surgery — triggers a pain so severe that it is, according to the McGill Pain Index, worse than than amputation. The pain typically remains in the region of the injury, usually involving a limb. But in Justin’s case, it spread through his entire body.

“A lot of people feel like their skin or their nerves are burning, but for me it feels like my bones are being crushed,” Justin says. “If I took my worst pain before CRPS, that would be like a 1 out of 10 compared to my pain now. You really can’t describe it.”

The pain that he’s bravely battled for 17 years has been excruciating and constant. With no end. And no cure.

“It’s there 24/7, and you don’t know when it’s going to go away or if it’s going to go away,” Justin says. “But I had two choices. One was to completely quit. And the other was to keep going and hope that it’ll get better.”

Finding Hope

But now, Justin is finally getting part of his life back through a form of non-allopathic (without drugs or surgery) treatment offered at the Spero Clinic in Fayetteville, Arkansas.

The clinic, which has over 40 employees and treats hundreds of patients every year, was founded in 2012 by Dr. Katinka van der Merwe. Born in South Africa, van der Merwe immigrated to the United States in 1994 and earned her Doctor of Chiropractic degree with the intent of using it to treat individuals who suffer from CRPS and other chronic pain conditions. .

Her clinic’s approach involves treating the vagus nerve, which is the longest and most complex of the body’s 12 cranial nerves. Individuals who suffer from chronic neurologic disorders often have an underactive vagus nerve, which causes inflammation that is either localized or, as in Justin’s case, envelops the entire body. It’s this inflammation that can cause excruciating pain.

“My philosophy and belief is that the body is incredibly intelligent and can heal from the inside out,” van der Merwe says. “People don’t come here to get a diagnosis and medication — they come here to have their bodies rehabilitated.”

The clinic approaches pain treatment in a holistic and noninvasive way, using a variety of therapies and tools involving electrical, physical and auditory/visual/sensory stimulation. It’s the clinic’s range of therapies that helps correct the nervous system and – hopefully -- puts the patient’s pain in remission.

“It’s a completely different approach to everything that I’ve tried so far,” Justin says. This has included the most radical of forms, such as being placed in a ketamine-induced coma in Mexico and brought out of it with the hope that his nerves would essentially reset. Some CRPS patients have found relief with ketamine infusions, but it didn’t work for Justin.

It was last March that Justin began treatment at the Spero Clinic. As soon as the first week ended, Justin experienced progress. It began with his ability to move his hands. Then the next week, he stood up. On the third week, he walked for the first time in 15 years.

Every week after that has brought similar victories — small to a healthy person, but momentous for Justin. Regaining his ability to drink a Gatorade. Regaining his ability to curl two-pound weights. Regaining his ability to wear clothing that fits him, rather than clothing so loose as to not press against his body and cause him a great deal of pain.

“Before I got here, the most I could take were fifteen steps,” Justin says. “And they weren’t good steps. I’d just drag my feet on the ground. Now I walk from my hotel room down a couple hallways, through the center of the hotel, and outside.”

Every incremental gain helps Justin continue to grind. Unlike most patients, who require two or three months of treatment, Justin will need at least half a year because of how severe his CRPS is.

Fundraising Help

The cost of every week of treatment — about $3,000 — is typically not covered by insurance, which does not make it any easier on Justin or his family. If anyone knows this, it’s Philip Robert, one of the Spero Clinic’s CRPS patients in 2016.

Robert spent ten weeks at the clinic and found his recovery so miraculous that he was inspired to form the Burning Limb Foundation, a non-profit whose mission is to raise funds to provide financial assistance to people with CRPS, primarily for treatment at the Spero Clinic. What makes the foundation different from most other non-profits is that 100% of the donations it receives are applied to treatment costs. And unlike other fundraising platforms like GoFundMe, donors are then able to write it off as a charitable gift on their tax returns.

“The idea is to get (CRPS patients) started — get them seed money — so that they can then do a fundraising campaign in the nonprofit world,” Robert says. “We provide a platform in which families can utilize their resources—their network of friends and family—who may be willing to give a little bit more.”

It’s through the Burning Limb Foundation that Justin has received much-needed financial support from family, friends and even people who have never met him but want to play a role in his recovery.

It’s that recovery that Justin realizes is so important, not only to live a life free of pain, but also to inspire others like him who suffer from CRPS. While not cured of the disease, he hopes his remission can bring hope to others.

“If it can work for me, it can work for anybody,” Justin says. “It’s not guaranteed to work for everybody, but it can work for anybody.” 

Miles Ryan Fisher is the Assistant Director of the Building Trades National Medical Screening Program and also serves on the advisory board for Columbia Lighthouse for the Blind. His articles have appeared in the Washington Post, Philadelphia Inquirer, Washingtonian Magazine, Motherly, and Go World Travel.