Retraining Your Brain Can Reduce Pain

By Dr. Joshua Pate, University of Technology Sydney

For every feeling we experience, there is a lot of complex biology going on underneath our skin.

Pain involves our whole body. When faced with possible threats, the feeling of pain develops in a split second and can help us to “detect and protect.” But over time, our nerve cells can become over-sensitized. This means they can react more strongly and easily to something that normally wouldn’t hurt or would hurt less. This is called sensitisation.

Sensitisation can affect anyone, but some people may be more prone to it than others due to possible genetic factors, environmental factors or previous experiences. Sensitisation can contribute to chronic pain conditions like fibromyalgia, irritable bowel syndrome, migraine or low back pain.

But it might be possible to retrain our brains to manage or even reduce pain.

Our body senses possible threats via nerve endings called nociceptors. We can think of these like a microphones transmitting the word “danger” through wires (nerves and the spinal cord) up to a speaker (the brain). If you sprain your ankle, a range of tiny chemical reactions start there.

When sensitisation happens in a sore body part, it’s like more microphones join in over a period of weeks or months. Now the messages can be transmitted up the wire more efficiently. The volume of the danger message gets turned way up.

Then, in the spinal cord, chemical reactions and the number of receptors there also adapt to this new demand. The more messages coming up, the more reactions triggered and the louder the messages sent on to the brain.

And sensitisation doesn’t always stop there. The brain can also crank the volume up by making use of more wires in the spinal cord that reach the speaker. This is one of the proposed mechanisms of central sensitisation. As time ticks on, a sensitised nervous system will create more and more feelings of pain, seemingly regardless of the amount of bodily damage at the initial site of pain.

When we are sensitised, we may experience pain that is out of proportion to the actual damage (hyperalgesia), pain that spreads to other areas of the body (referred pain), pain that lasts a long time (chronic or persistent pain), or pain triggered by harmless things like touch, pressure or temperature (allodynia).

Because pain is a biopsychosocial experience (biological and psychological and social), we may also feel other symptoms like fatigue, mood changes, sleep problems or difficulty concentrating.

Neuroplasticity

Around the clock, our bodies and brain are constantly changing and adapting. Neuroplasticity is when the brain changes in response to experiences, good or bad.

Pain science research suggests we may be able to retrain ourselves to improve wellbeing and take advantage of neuroplasticity. There are some promising approaches that target the mechanisms behind sensitisation and aim to reverse them.

One example is graded motor imagery. This technique uses mental and physical exercises like identifying left and right limbs, imagery and mirror box therapy. It has been tested for conditions like complex regional pain syndrome (a condition that causes severe pain and swelling in a limb after an injury or surgery) and in phantom limb pain after amputation.

Very gradual exposure to increasing stimuli may be behind these positive effects on a sensitised nervous system. While results are promising, more research is needed to confirm its benefits and better understand how it works. The same possible mechanisms of graded exposure underpin some recently developed apps for sufferers.

Exercise can also retrain the nervous system. Regular physical activity can decrease the sensitivity of our nervous system by changing processes at a cellular level, seemingly re-calibrating danger message transmission. Importantly, exercise doesn’t have to be high intensity or involve going to the gym. Low-impact activities such as walking, swimming, or yoga can be effective in reducing nervous system sensitivity, possibly by providing new evidence of perceived safety.

Researchers are exploring whether learning about the science of pain and changing the way we think about it may foster self-management skills, like pacing activities and graded exposure to things that have been painful in the past. Understanding how pain is felt and why we feel it can help improve function, reduce fear and lower anxiety.

Don’t Go It Alone

If you have chronic or severe pain that interferes with your daily life, you should consult a health professional like a doctor and/or a pain specialist who can diagnose your condition and prescribe appropriate active treatments.

In Australia, a range of multidisciplinary pain clinics offer physical therapies like exercise, psychological therapies like mindfulness and cognitive behavioural therapy. Experts can also help you make lifestyle changes to improve sleep and diet to manage and reduce pain. A multi-pronged approach makes the most sense given the complexity of the underlying biology.

Education could help develop pain literacy and healthy habits to prevent sensitisation, even from a young age. Resources, such as children’s books, videos, and board games, are being developed and tested to improve consumer and community understanding.

Pain is not a feeling anyone should have to suffer in silence or endure alone.

Joshua Pate, PhD, is a Senior Lecturer in Physiotherapy at University of Technology Sydney. He is on the Scientific Program Committee for the Australian Pain Society.

Josh’s research focus is on childhood pain. He is the author of a series of five books designed to help children learn and talk about pain, called Zoe and Zak's Pain Hacks.

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

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. 

We Need Better Treatments for Long Covid, Fibromyalgia, Chronic Fatigue and More

By Dr. Seth Lederman

Headlines about COVID have faded, and the United States will soon turn the page on public emergency status for the pandemic. The virus no longer dominates most of our lives, yet there are still thousands of new hospitalizations daily and an estimated 15 million Americans currently suffer from Long COVID.

The deep impact of long-haul cases has contributed to a surge of patients with disabling conditions, who are often misdiagnosed or treated ineffectively. More than one in five people infected with COVID-19 develop Long COVID and its constellation of physical and neurological symptoms. The persistent pain, fatigue, sleep problems and brain fog are similar to two other post-infectious syndromes, fibromyalgia and chronic fatigue syndrome (CFS/ME).

A recent study of both conditions and Long COVID documented that the physical and cognitive impairments of Long COVID were exacerbated in people previously diagnosed with CFS/ME or fibromyalgia. These types of chronic overlapping pain conditions have long been recognized by the National Institutes of Health (NIH), and the president’s National Research Action Plan on Long COVID similarly makes the connection between CFS/ME and Long COVID.

More than 50 million people struggle with these neurological illnesses every year in our country, and the burden of their chronic diseases comes at incalculable personal harm, along with billions of dollars in healthcare costs and lost productivity. 

There is one common denominator among all these unrelenting illnesses: the human brain. Physicians like me who study infectious and neurological diseases know that getting a drug’s active ingredients into the brain is not easy. Unlike biologic drugs, which are usually administered by injection, the only medications that can cross from the bloodstream into the brain are small-molecule drugs.

But big pharmaceutical companies have largely abandoned the development of new small-molecule therapeutics, instead pursuing biologic drugs which tend to be more expensive and profitable. That is because of a complex mix of federal laws granting longer market exclusivity to biologics, patent law changes that remove economic incentives to develop new small-molecule therapeutics, and mounting Food and Drug Administration hurdles.

Yet small-molecule drugs can be highly effective and life-changing, as well as relatively cost-effective to manufacture and distribute. They are our best hope for offering real relief to people struck by cruel conditions rooted in brain function.

As we pick up the pieces from a once-in-a-generation pandemic, we cannot ignore the rise in debilitating post-infectious diseases. In a sense, the people afflicted by these illnesses are living with invisible scars from the infections that preceded their current illnesses. There is an urgent need to help them by restoring incentives for small-molecule drug development and streamlining regulatory processes for new treatments.

The government should be accelerating efforts to expand its support for new drug therapies to address fibromyalgia, CFS/ME, Long COVID, and other illnesses that originate in the brain. The untapped potential of emerging therapeutics is unacceptable, as is the fact that many patients’ symptoms are frequently misinterpreted or dismissed.

It is good news that the Advanced Research Project Agency for Health has been established within NIH to pursue biomedical breakthroughs. But our country could still be doing more on this front. Congress has the power to legislate a more level playing field for small-molecule drug development, correcting decades of bureaucratic bias.

Lawmakers should appropriate more resources to fast-track clinical trials and scale-up delivery of novel therapies for post-infectious diseases. Public-private partnerships could also go a long way towards bridging the gap between treatments that would transform patients’ lives and their current limited options.

We know from our experience with COVID that medical science is capable of swift and significant breakthroughs. Our public health system should be equipped to readily diagnose and effectively treat people with fibromyalgia, CFS/ME, Long COVID, and similar devastating illnesses.

While the symptoms of these diseases are often not visible, our responsibility to provide patients with advanced and effective care is very real. For millions of Americans and their families, the time for better treatments is now.

Seth Lederman, MD, is a physician-scientist and CEO of Tonix Pharmaceuticals, a company developing technologies to treat Long COVID, PTSD, fibromyalgia, and other diseases.

Study Linking Suicides to Rx Opioids Not Supported by Data

By Dr. Stefan Kertesz

Almost everyone has a personal connection to the national overdose crisis that claimed over 107,000 lives last year. Many have also been touched by the rising toll of suicides in the U.S, which took over 47,000 lives in 2021.

Given the pain of those losses, debates over causes and solutions are contentious, especially when they involve the real or speculative role played by prescribed opioids in suicides. In the quest for solutions, researchers and advocates sometimes make recommendations that are not supported by data.

Recently, an article in the American Journal of Psychiatry (AJP) that was widely covered in the lay press, suggested that reductions in the chronic use of prescribed opioids for patients with pain slowed an otherwise discouraging national 20-year rise in suicides. Further, the paper suggests its findings should alleviate concerns about dose reductions in pain patients who have relied on these medicines long term. However, these conclusions were not supported by the data in the study or in any other available data.

Given rising national concern about a burgeoning opioid crisis, many doctors forcibly reduced doses in long-term recipients of prescribed opioids, often under pressure from regulators and boards. Unfortunately, suicides started happening among patients who were taken off their medication.

A series of state- and national-database analyses have documented, retrospectively, elevated rates of mental health crises, suicidal actions or death by suicide among those persons whose doses were reduced, compared to persons not subject to reduction. Because the risk for suicide or suicide attempt remains elevated 1-2 years after the reduction, it has not seemed likely that these tragedies are entirely due to acute withdrawal from opioids. Various authorities have called for caution, as have clinician-researchers like me.

The new article in AJP, from investigators at Columbia University, pushes back. It reports that areas of the country with the biggest declines in opioid prescriptions partly bucked a national trend toward rising suicides.

A few details make it easier to think about what such regional studies can and cannot show. The study relies on suicide data from 2009 to 2017, across 882 “commuting zones” (as devised by the Bureau of Agriculture, areas typically bigger than a county). As mentioned: suicides rose nationally over the study years 2009-2017. Opioid prescriptions dropped from a 2012 peak to the present.

Statistical models tested whether suicide rates rose less in those regions with the greater prescription declines. Of course, regions differ. The study’s models tried to control for that by assigning a single statistical term for each region called a “fixed effect.” The assumption behind a “fixed effect” is the following: As long as the regions differ from each other in “fixed” ways that did not change from 2009-2017, then the models controlled for such differences

This is not a reasonable assumption. We know that regions change in many ways likely to contribute to reductions in opioid prescribing and suicide, without one causing the other. One town might enjoy some economic development, an influx of young families, and new doctors who prescribe less; a decline in suicide might result from all these good things, without the opioid prescriptions having much to do with it. Statistical and graphical analysis could have helped readers learn whether the model’s assumptions were acceptable; but they weren’t presented.

Still, this paper does show that regions with a greater decline in opioid prescriptions (compared to all others) had a smaller rise in total suicides and in opioid-related suicide rates (compared to all others). That regional pattern merits investigation. But there were also exceptions (this pattern wasn’t evident in adults 65 or older). And, for younger persons, unintentional deaths involving opioids seemed to rise most in regions with the greatest prescription declines.

No Justification for Forced Tapering

There would be nothing problematic about this article if all it did was present its data and invite further discussion. The article, however, proposed to address the matter of tapering long-term opioid recipients. The introduction cited two of the studies where suicide risk rose after reduction (including one I co-authored), and attempted to refute them -- an unusual approach for an introduction.

Then, the paper’s discussion argues that it is the patient who receives the prescription who is put at personal risk for suicide, citing a VA paper where opioid doses did correlate with suicide risk. But that discussion omits a much richer Australian study that looked for, and could not find, any association between opioid receipt, or opioid dose, and suicidality.

Buried in the discussion, a caveat was offered, that the results “do not shed light on the clinical pathways connecting local opioid prescribing to individual opioid overdose suicide deaths.”  However, this went unnoticed by many readers. (It was an academic article version of churnalist’s fifth sin: “disclaim and pivot.”)

As a physician-researcher, I care about whether studies are used in ways that misrepresent the risks of curtailing prescriptions in patients with pain. Today, I lead a federally-funded study to examine 110-120 suicides through interviews and record review. We seek to examine them in depth, the way crash-site investigators assess airplane crashes. That’s because we don’t see suicide as simple one-cause affairs.

However, simple stories appeal to reporters. The new paper ignited a storm of inaccurate press coverage, that was seen by many as endorsing the safety of forced opioid reductions, notwithstanding CDC and FDA declarations to the contrary. Speaking to US News and World Report, for example, an associate professor of surgery announced, “for those who have wondered whether curtailing opioid prescriptions could be associated with an increased risk of suicide, this study is reassuring.”

Within days, a widely-quoted, highly-paid expert witness for the plaintiffs in our nation’s ongoing opioid litigation tweeted that the new data “debunk” a “hoax that opioid reduction caused an ‘epidemic’ of suicides” (designation of a suicide “hoax” is not a one-time affair for this expert). 

Of course, no experts had claimed an “epidemic” of suicides. Rather experts and patients observed that tapering can increase the risk for suicide, and were appropriately concerned to avoid that.

Ultimately, reporters repeated the fallacy that regional data can tell us how to care for individual patients. But it was the way the paper was written -- most notably its introduction and discussion -- rather than its data, that drew that interpretation. I suspect that public mockery of suicide risk was not the outcome desired by the authors, given that the final lines of the paper urged caution with opioid dose changes.

Speaking with senior author Dr. Mark Olfson confirmed that sense. He readily offered the following condemnation:

“The results of our recent study indicate that regions of the country that experienced the greatest declines in opioid prescribing also tended to have the greatest declines in regional suicide rates. It would be a mistake, however, to assume that this ecological observation informs the daily clinical management of individuals receiving opioids for chronic pain or refutes clinical research demonstrating risks attending forced opioid tapers.”

Commonsense care of individual patients requires nuance. The best practice is not to force opioid reductions without consent, save when the justification is exceptionally compelling. Even then, the clinician must have a plan to protect the patient from harm, and reverse course if their dose reduction harms the patient.

Individual clinical decisions should not be based on findings from geographic analysis of populations. Clinicians and researchers alike might best avert suicide by seeking a careful understanding of the particular patient, their history, and their context.

Stefan G. Kertesz, MD, is a Professor of Medicine and Public Health at the University of Alabama at Birmingham School of Medicine, and physician-investigator at the Birmingham Alabama Veterans Healthcare System. His views are his own, and do not represent positions of his employers. On Twitter he is at @StefanKertesz. His team’s study can be found here.

This article first appeared in Sensible Medicine on Substack and is republished with permission.

6 Tips for Healthier Living with Chronic Pain

By Barby Ingle, PNN Columnist

People with chronic pain-related medical conditions are at higher risk for infection, falls, poor posture, complications, mental health issues and other challenges. There are things we can do to help lower these risks and live fuller, longer, happier and healthier lives.

Tip #1: Have good communication with your medical providers. Your medical team can include specialists in primary care, pain management, rheumatology, dentistry, ophthalmology, gastroenterology, gynecology, podiatry, surgery, physical therapy and nursing. The more proactive you are in communicating with your providers, the better and faster they can assist you in proper care.

Tip #2: Keep your weight under control. Maintaining an ideal weight as a pain patient can be difficult. You can lose your appetite and not eat enough, or overeat to help deal with the stress of being ill. You may even have cravings for goodies because the pain is so bad. We need something good in our life, right?

Maintaining a good body weight can be very helpful. I use the Noom healthy eating app, gut health testing through Viome, and self-discipline to better control my weight. I watch what I eat and look for healthy treat items that I can enjoy when others around me are having their goodies, helping me to stay social.

Healthy eating needs to be individualized. What is good for me to eat is not always good for others. Find your dietary recommendations and stick to them whenever possible.

Tip #3: Drink plenty of water. I know, I know. Water can be so dull. But drinking the right amount of water increases your energy and helps you focus more. Improved concentration and memory enable you to take on more in life and stay active.

Drinking water can also help you feel fuller and avoid overeating. Water flushes out toxins that we build up from high pain levels, the environment, and other lifestyle choices. Good hydration improves your skin texture, helps it stay elastic and makes you look younger. 

Tip #4: Exercise regularly. I know it’s much easier said than done. Even if you just reduce your sitting and screen time, making the change can help. Know your physical boundaries. For example, if you have a catheter and are not supposed to lift over 10 pounds, don’t do it. Stick to simple household tasks, such as moving the clothes from the washer to the dryer or engage in light sweeping.

During the pandemic, I started doing stretches and light yoga moves while watching TV. Many great exercise shows can be found on television, YouTube and the Internet. Even if you cannot touch your toes like the person in the video can, you can still stretch in that position. Make it a goal to improve your range of motion. Goal setting and a plan of action can help improve vascular flow, blood pressure and other health benefits.

Tip #5: Improve your sleep. A good night’s sleep not only helps reduce pain, it improves your brain performance and mood, and helps lower the risk of heart disease, stroke and obesity. 

Tip #6: Do not smoke or drink to excess. Work to do it less and less each day. I know it’s hard, but I also know it is possible to limit yourself or even quit. 

None of these tips will cure pain. They are tools to help improve your daily living despite your pain. We are told them while growing up, but often life gets in the way and we need a reminder to check our self-care tools and improve the manageable areas of life.

Best wishes in all you do to live a happier, more productive and healthier life! 

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.   

A Pained Life: I Was a Platypus

By Carol Levy, PNN Columnist

Have you ever seen a platypus? The semiaquatic mammal from Australia that lays eggs and is duck-billed, beaver-tailed and otter-footed?

It’s hard to believe it is actually one animal. In fact, the first European scientists to examine the body of a dead platypus thought it was fake, made from the parts of several different animals that were sewn together.

To many doctors, people in pain are platypuses.

When my first symptoms of trigeminal neuralgia started many decades ago, a patient had to have three specific diagnostic signs.

The pain had to be spontaneous and triggered. Mine was. It had to be in a very specific anatomical area of the face. Mine was. You also had to be over 60 years of age. Or, if you were in your 40's or 50’s, you had to have multiple sclerosis.

I wasn't in my 60's and didn’t have multiple sclerosis. Therefore, because of my youth – I was 26 at the time -- it could not possibly be trigeminal neuralgia. “It looks all the world like trigeminal neuralgia. But it can't be, because you're too young,” one doctor told me.

Two of my symptoms were by the book, but the last one, my age, was like the otter's feet. I was a platypus.

Things have changed a lot over the years, The criteria for a trigeminal neuralgia diagnosis have changed significantly. The pain can have a number of different characteristics and the association with old age was completely wrong. Even toddlers and newborns can have it. Age doesn't matter.

Complex Regional Pain Syndrome and other chronic pain disorders have us presenting many different symptoms to our doctors that, on the face of it, don't make sense. Many of us complain, rightfully so, that the doctor didn't listen when we described our symptoms. Some may fit a specific disease or disorder, while others do not.  

The doctor seemed to listen, but heard only one or two of the symptoms while ignoring others -- the ones that didn't fit their preconceived notion of what we might have. Or didn't fit the textbook description. As a result, we often don’t get the correct diagnoses, and without the right one there is no way to treat the condition or pain correctly. 

When pain became a specialty of its own, when doctors started opening practices solely for those of us living with chronic pain, it seemed like a godsend. We would finally be seen for the singular entity we were -- persons living with pain --- not some platypus that doctors saw as too bizarre to be real. We would be legitimized. 

Unfortunately, since they started taking the “war on opioids” out on the chronic pain community, making us the villains, it seems our legitimacy was lost. 

We are not like patients with other diseases like cancer or diabetes, where the diagnosis is straightforward. We still have to fight to be believed, and to be heard.

It took time for platypuses to be seen as real, more than just an oddity of nature. Let’s hope that someday we will also be believed and accepted. 

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

More States Should Require Insurers to Pay for Medical Cannabis

By Paul Armentano, Guest Columnist

Should health insurance programs reimburse patients for their use of medical cannabis products? In a growing number of states, the courts are saying “yes.”

In the most recent example, a Pennsylvania Appellate Court ruled that workers’ compensation plans must cover cannabis-related expenditures when an employee uses it to recover from a workplace-related injury. The court ruled that employees in Pennsylvania possess “a statutory right” to be reimbursed for medical marijuana expenses that are reasonable and necessary to treat a work injury.  

“The MMA (Pennsylvania Medical Marijuana Act) specifically mandates that no medical marijuana patients be denied any rights for (the) lawful use of medical marijuana,” the Court said.

The Pennsylvania Court is not the first to issue an affirmative verdict in this matter. Courts in several states, including Connecticut, New Hampshire, New Jersey, New Mexico and New York, have provided similar opinions – determining that the denial of compensation claims would be antithetical to the legislatures’ express findings that cannabis is a state-legal therapy.

By contrast, courts in some other states, including Minnesota, have issued contradictory opinions – finding that it would be inappropriate for insurers to reimburse claimants for their use of a federally illegal substance. Federal law still classifies marijuana as a Schedule I controlled substance, placing it in the same legal category as heroin.

In most states, however, the law is largely silent on the issue. But don’t expect that to be the case for much longer. As scientific consensus and public attitudes surrounding the safety and efficacy of medical cannabis continue to evolve, the way insurers approach patients’ use of marijuana is likely to change too.

For example, lawmakers in Massachusetts recently introduced legislation explicitly providing that injured employees be reimbursed for their medical marijuana-related costs. In New York, lawmakers just advanced legislation, A. 4713, requiring public insurance plans to treat medical cannabis like any other medication. 

Thirty-eight states and the District of Columbia currently regulate the production and dispensing of cannabis for medical purposes. No state government has ever repealed or even rolled back these laws. That’s because these policies are widely accepted among both the public and among health professionals.

In fact, according to nationwide survey data recently compiled by the Centers for Disease Control and Prevention, over two-thirds of practicing physicians acknowledge the efficacy of medical cannabis and over one-quarter say that they have recommended it to their patients. 

Tens of millions of Americans are now using cannabis therapeutically. The number has doubled over the past decade, as peer-reviewed data that support the use of medical cannabis for the treatment of pain, multiple sclerosis, and other ailments has continued to grow. In many instances, patients are replacing their use of opioids, benzodiazepines and other prescription medications with cannabis because they find it more effective and with fewer adverse side effects. 

In short, most patients, most physicians, and most state laws view cannabis as a legitimate therapeutic option. Therefore, the millions of Americans who rely upon medical cannabis products ought to be afforded the same entitlements as those who use other conventional medications and therapies. Those privileges should include insurance-provided reimbursement for medical cannabis treatment.  

State legislators ought to see to it that this is a right provided for and protected in jurisdictions where medical marijuana is legally available under the law. 

Paul Armentano is the Deputy Director for NORML, the National Organization for the Reform of Marijuana Laws.

Why Positivity and Gratitude Beat the Alternative

By Mia Maysack, PNN Columnist

As I write this, I am 33 years old.  And I've lived in pain every day for almost 23 years.

My pain has only gotten more complicated over time, more difficult to deal with and manage. It is intractable, as well as incurable. There have never been treatment options for me that truly worked, only those that temporarily masked the pain or worsened the symptoms and caused irreversible complications.

Those of you who at any point gained access to something that worked or alleviated your discomfort to any extent are privileged. Because some of us have literally not experienced that.

As a 10-year old child whose life was forever changed by a bacterial infection and near death experience, there was no other option for me than to cling desperately to the concept of  "positivity." The only other choice at that point would've been a defeatist, victim mentality:  Why did this happen to me?  I don’t deserve it. My life is ruined. There’s no hope for the future.

I still have those thoughts at times, but I consciously choose not to accept them as the final say or whole picture.  Life hadn't even begun for me when I was stricken, yet I was strong enough to stand firm in my Truth:  I'm not yet ready to die or give up on my quality of life.

As time went on, things got even harder and without any dependable relief. I was often pushed to what felt like my breaking point. It dawned on me that a “positive” attitude was not going to be enough to survive, so my thought process and mindset had to evolve.

Looking at the bright side, being thankful I wasn't dead, and acknowledging that things could have been worse (and might still be) wasn't sufficient to peel my fragmented sense of self off the cold hard floor. So, my focus in life turned to gratitude. 

I became grateful for that cold hard floor, where I could curl up in a fetal position and count my blessings. At least I was still above ground and could find solace in the ability to live on for the sake of other people, so that they wouldn't feel as rejected, alone, forsaken and shunned as I was.

This approach worked, until it didn't.

When even the “attitude of gratitude” didn't suffice, I had to re-examine it and take it all back to basics, recalling things I'd often skip over and take for granted, such as the gift of my senses, the ability to fill my lungs with air, and possessing access to endless knowledge at my fingertips.

Of course, I could never lose sight of the fact that I was incredibly lucky to still be alive, even when it didn’t feel like it.  But these beliefs were undeniable pillars that held me up through times when I couldn't move, think straight, or do anything but stay in bed and cry.

More recently, even this approach was falling short. I was sick and tired, nearing the point of no return. All the motivational tools I cultivated on my own were falling short. What do I do now?  Where do I turn?

These efforts do not come easily and certainly do not represent an absence of intrusive thoughts or negative feelings. Remaining consumed in the darkness has almost cost me everything, on more occasions than I'm able to keep track of. 

But it dawned on me early on that I had a choice. Instead of investing energy in my ailments, I could focus on my response to them. It was a no-brainer to realize that fixating on all that was wrong in my life doesn't improve it or help me feel any better. To choose that kind of suffering is far more toxic and tragic than my pain ever could be.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

A Window Into the Impossible: A Pain-Free Life

By Cynthia Toussaint, PNN Columnist

I recently experienced the miracle of living pain-free for a while, after 40 years of body-wide Complex Regional Pain Syndrome. I was astonished by what it felt like and what I learned about myself.   

In November, I had a serious cancer treatment complication, one that landed me in the hospital and forced me to suspend care. After stabilizing and returning home, I had to taper down from a course of high-dose prednisone, a corticosteroid, over eight weeks.     

The multitude of prednisone side effects were worse than I imagine hell to be, save one: my pain was gone. Okay, not gone-gone, but so damn near I forgot about it.

Yeah, you read that right. After decades of burning, radiating, life-upending, soul-crushing, never-ending, can’t-do-another-moment pain, it just wasn’t a thing anymore.     

Over the last decade or so, my life partner, John, has asked me on occasion, “What would you do if your pain just went away?”

That question pissed me off because pain has robbed me of my dreams. How dare it go away now, I would think, after destroying my life! Ebbing into my later years, I knew it was too late to reclaim what was gone. I decided it would hurt too damn much psychologically to lose my physical pain.  

I was stone-cold wrong. When the prednisone kicked in, it was nothing short of heavenly bliss to be without my constant agony. At first, it felt as though much of my lower body had been amputated, but in a good way. Poof, like magic, the tonnage of pain and heaviness were gone. Also, to my surprise, I had zero emotional fall-out.

I marveled in the miracle of standing, as this ability had been absent for many decades. I’ve spent countless hours, weeks and years staring at people in public, trying to figure out how they could stand and shift their weight without apparent torment or thought. After becoming a “shifter” myself while on prednisone, I had a clear, three-word answer: It doesn’t hurt.   

Not using my wheelchair was a trip because people stopped treating me like a child. Rather than literally gazing down with pity, they looked me straight on, eye level and all. They even asked me questions about myself, rather than disregarding the invalid while turning to John. That, in itself, was a game-changing reality, and I started to smell the sweet possibility of independence again.       

Every moment without pain was a miracle, blowing open my mind with new ideas and long packed away possibilities. For the first time, I seriously thought researchers would someday find a cure for CRPS. I mean, if they could switch much of my pain off virtually overnight, clearly science was on the edge of making this stick permanently.

If only.

Here’s the other side of the story I alluded to earlier. When my pain went away, it cruelly coincided with the most torturous time of my life. The price of high-dose prednisone was, for me, an existence worse than pain. I was in and out of psychosis, sleeping three to four hours a night with an irregular, pounding heartbeat, and a thousand other little shop of horrors. With that onslaught, my spirit broke. Add the perils of aggressive cancer and the fallout of a serious treatment complication, and the torture was just too much.

On New Year’s Eve, my 62nd birthday, I told God that if it was my time, I was ready to go. I didn’t think Cynthia was ever going to come back. “Please, please make my suffering stop,” I begged.

To my surprise, and most I know, I clawed my way back after completely tapering off the prednisone. My new miracle has me living in gratitude, despite my old pain rushing back with a vengeance, leaving me with a GOAT of a pain flare. I writhe through much of my days and nights, feeling the burning hatchet sear my joints. But, dammit, I’m me again, and, like all flares, this too shall pass.      

Thankfully, I’m strong enough to be back on chemo as the benefits of self-care are once again paying off in spades. Adding to the good news, my recent CT/PET scan came out negative. “No Evidence of Disease” to be precise! These days when I pray, I don’t ask God to take me, but rather to keep me on this glorious earth.             

I got a glimpse into the other side, the miracle of being pain-free. But the cost of losing me was too high. Heck, science tells me I’d no longer care about my pain if I got a lobotomy. No thanks.

I’m back to not wasting precious energy speculating about a possible cure. If it comes, fantastic, but I have no expectations, and accept and embrace the reality of what is right now.

Though my pain is often wretched and dark, I long ago embraced it as part of my authentic self. And to stay true to one’s self, there sometimes comes a great cost.

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Finding a New Ketamine Provider

By Barby Ingle, PNN Columnist 

For me, treatment with ketamine was life giving and lifesaving. I started ketamine infusion therapy in 2009, flying back and forth to Pennsylvania for treatment at Drexel University Hospital. My doctor there, neurologist Robert Schwartzman (now deceased), did much of the initial research on ketamine as a treatment for Reflex Sympathetic Dystrophy (RSD), also known as algoneurodystrphy or complex regional pain syndrome (CRPS).

I was on the ground floor with ketamine as a pain treatment, and helped bring it to Arizona with providers like Drs. Steven Siwek, Eric Cornidez, Natalie Strand at the Pain Centers of Arizona and Freedom Pain Hospital, to name a few.

One of my favorite places to go was Ketamine Wellness Centers (KWC), which operated a nationwide chain of ketamine clinics until it abruptly shut down last week. I knew many of KWC’s staff members at their Arizona and Florida offices.

I was patient zero for KWC. I remember sitting with Gerald Gaines (now deceased) and Kevin Nicholson, the current CEO, and sharing with them how ketamine changed my life. I asked them to look into ketamine and start a clinic. They did. Kevin built up the business and eventually opened 13 clinics in 10 states before recently merging KWC with another company, Delic Holdings.

The merger hasn’t worked out due to financial issues. The clinic closures significantly affect access to care for chronic pain, depression and mental health in the communities they served. KWC was one of the only places that treated both pain and depression, using ketamine in conjunction with other modalities.

As a patient, I have been through clinic closures before and providers stopping their ketamine treatment for various reasons. Upon reflection, I have been to more than 10 clinics and had close to 20 providers since starting in 2009. It is scary to think that thousands of patients like me have to start the process all over again, but having been in this situation before, I know it can work out.

My message to the former patients of Ketamine Wellness Centers is that there is hope. It may be harder depending on where they live, but other options exist. I plan on getting the same treatment that I have since 2009. I was asked how to go about finding a new ketamine provider by another patient. My response is this:

1. Know your ketamine protocol and how it works for you

2. Call ahead of your consultation and say, “This is what I had. This is what I want. Can you do it?”

3. Don't settle for less. There are many ketamine providers now. Find the one that is a fit for you.

Getting this treatment is very personal, and you need a feeling of safety, comfort and trust. It is not just about getting your IV hooked up and going from there. You should be exploring your options, just like you did the first time with KWC.  Now you have experience and know what ketamine therapy is like. 

When I got this treatment for the first time from Dr. Schwartzman, my entire life changed for the better. I went into the hospital in a wheelchair. Seven days later, I walked out. It's helped with dystonia, strength, balance, coordination and more. The most significant area of success for me was the burning fire pain. I strive never to have that pain again. Receiving ongoing treatments helps me live with my daily chronic pain issues. 

I received my latest infusions at the Ketamine Wellness Center in Tucson a few weeks ago. At the time, I had no idea that KWC was about to shutdown. I know it's a shock to all of us former patients, and I'm worried about the employees and where they will go. Their knowledge and experience will be welcomed at other clinics.

Part of the problem with KWC is that they expanded too quickly when they merged with Delic. Ketamine treatment is not a cash cow for providers, but they can make a good living and help thousands of patients who rely on ketamine to relieve their pain, be it mental or physical.

I hear that there will be lawsuits due to KWC’s abrupt closure and lack of notice, the inability of some patients to receive their medical records, employees who have not been paid correctly, and other challenges that have come to light. This will all be sorted out. It will take time, but we already know it is worth the time, effort and energy to ensure we can receive the life-giving treatments. 

I still need to receive my medical records from KWC, but I have all of my records from other providers and have changed my treatment protocol. I am already in talks with new providers. I don't have time to wait around.

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   

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. 

Algorithms Now Determine If You Get Medication

By Crystal Lindell, PNN Columnist

Did you know that secret algorithms are being used to determine whether your pharmacy is allowed to stock certain medications?

Algorithms are computer software programs designed to select, calculate and carry out certain actions – in this case the amount of opioids and other controlled substances that pharmacies can keep in stock to fill prescriptions with. And if an algorithm decides your pharmacy has used up its monthly allotment of a controlled drug, there’s almost no recourse for you as a patient.

The situation was recently brought into the spotlight by The New York Times article, “Opioid Settlement Hinders Patients’ Access to a Wide Array of Drugs.”

As The Times explains, the $21-billion opioid settlement brokered between the three largest U.S. drug distributors and 46 states includes a provision that forces the distributors to place strict limits on the drugs they supply to pharmacies. In addition to opioids, any medication labeled as a controlled substance is now subject to these restrictions, including Xanax, Adderall, muscle relaxants, and more.

“Before the settlement, pharmacists said, they could explain to a distributor the reason for a surge in demand and still receive medications past their limits. Now the caps appear to be more rigid: Drugs are cut off with no advance notice or rapid recourse. As a condition of the settlement, distributors cannot tell pharmacies what the thresholds are,” The Times reported.

So, like I said, secret algorithms are effectively deciding your medical treatment. And it’s not even based on you as an individual. It’s based on how many people in your region are taking the same medication.

Predictably, the situation is causing a lot of problems for a lot of people. The Times found that a number of groups have been affected, including:

1. “College students far from home trying to fill their Adderall prescription.”

2. “Patients in rural areas where it is customary to drive long distances for medical care.”

3. “Hospice providers that rely on local pharmacies for controlled substances.”

Let’s take a moment to truly absorb that last one. While the The Times used the term “hospice providers,” we all know what that actually means: hospice patients who are very sick or terminally ill.

So, it doesn’t even matter if you’re on your deathbed, you still might not get pain relief. And the decision for denial, to paraphrase how a pharmacist might explain it, is basically: “A bunch of your neighbors already got morphine, so you can’t have it.”

While the exact metrics used to deny shipments aren’t public, the drug distributors have addressed the issue on their websites, and explained how they’re tracking prescriptions.

“The algorithm will flag order lines of unusual size, frequency or pattern based on a pharmacy’s own order history or when compared to peers,” AmerisourceBergen explains. “Any order lines that are flagged by the algorithm will be automatically cancelled and reported.” 

Again, none of that is based on what any specific patient is experiencing.

All of this would be upsetting if it were only impacting opioid medication, but the fact that it’s been extended to other common prescriptions – that weren’t even part of opioid litigation -- is both enraging and scary.

Doctors do not give prescriptions for any controlled substances out easily, so if a patient is being prescribed any of the meds, then they need them.

Now, you may assume that at the very least, pharmacies are calling doctors once they hit these new thresholds so that the doctor can at least try to prescribe something else or send the prescription to another pharmacy.

You’d be wrong.

As the The Times reports:

“Psychiatrists in California were so alarmed by patients’ stories of unfilled prescriptions that they sent a survey to colleagues in December. They received reports of dozens of such problems, said Dr. Emily Wood, chairwoman of the government affairs committee of the California State Association of Psychiatrists.

Dr. Wood said that patients who take a stimulant for A.D.H.D. sometimes need anti-anxiety pills or a sedative at night to sleep — but that pharmacists now tell them they cannot have the combination.

“Pharmacists aren’t calling the doctors to work it out,” Dr. Wood said. “They’re just not filling the prescriptions.”

Pharmacists are being put in an impossible position, being forced to essentially serve as police agents without any say in what they’re enforcing. And it’s upsetting that the task of reaching a doctor to ask for a different prescription is now falling on patients with conditions like ADHD, a disorder that makes tasks like that especially difficult.

I couldn’t find much about how these algorithms were created, so it’s unclear if doctors were involved in creating them. But one thing we do know is that your personal doctor definitely wasn’t involved. And your personal needs were not a factor.

Your medical treatment is now being determined by drug distributors, state attorneys general, lawyers and computers — none of whom have ever met you or your doctor.

The thing that most people in the United States don’t seem to understand — but may be about to learn — is that to the DEA anyone who uses a controlled substance above a certain level must be abusing them. This is evidenced by the fact that this policy is even leading to restrictions for hospice patients and none of the parties involved are trying to fix that.

As the The Times reports, “Although the tighter restrictions have been in place for months, the government has offered little remedy for patients.”

It’s easy to believe the myth that restrictions on controlled substances are there to help keep us safe. That they are only meant to keep these medications from people who might misuse or abuse them.  But how is it safe to make a patient quit Adderall cold turkey, even when they have a valid prescription for it? How is it safe to tell rural patients that they need to drive hundreds of miles to another pharmacy? How is it safe to deny pain relief to a dying cancer patient? It’s not.

Everything about this situation is so inhumane. We’ve had incredible medical breakthroughs and finally have medications available for health conditions once considered untreatable. But it doesn’t matter. The masses still can’t have them. We must continue to suffer for whatever time we have left.

And for what? What is the reward for our suffering? Apparently, just more suffering.

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. 

Finding Hope in Possibilities

By Mia Maysack, PNN Columnist

My journey in advocacy began and revolved around healthcare reform. I’ve since stepped back from that pursuit, the main reason being that the medical-industrial complex isn’t the only system in need of dismantling. It didn’t make sense for me to focus solely on one aspect, but rather all of them, and the ways in which they are polluting the same corrupted river.

My efforts started out fixated on neurological disorders, because that’s what I’ve endured for most of my life. But I believe each diagnosis matters equally, and whether I’m able to personally relate to them has always been irrelevant to me. I still care about everybody’s dignity and I believe most patients appreciate my efforts.  

I’ve met some of my absolute favorite individuals through this work, but a large percentage remain stuck in their grief and mourning or wrapped up in their pain identity. I get that because I’ve been there.

Despite my patience and understanding, that’s often not what I receive in return.  I’m thankful for the inner work I’ve done, which provides strength for me to withstand those who so boldly mistreat me. I also understand that it is more about them and their inner climate than me. That doesn’t mean I am better than anyone, but that I operate from the bigger picture.

Despite having every reason a person could think of to give up, I have not. What I offer the pain community is a new way of thinking: hope in the possibility of brighter days ahead. 

I’ll never understand why some choose to remain miserable when they don’t have to. It doesn’t make sense to me how people can sit and complain about not being well enough to call a legislator or advocate for themselves, but devote so much energy and time into diminishing those of us who try to turn our misfortune into something that all are able to benefit from.

What hurts more than the attempted character assassination is the fact that we continue losing so many to suicide, not just in the pain community but the world around us. I reflect on how the cruelty I’ve endured could be the last thing someone encounters before they choose to just finally throw in the towel. It’s infuriating because it means we’re essentially playing a role in murder.

I am sorry if your life experiences have led you to feel as though the only thing you’re able to do is to attempt to hurt other people. I know that those frustrations are not to be taken personally, but stem from the doctors, trial and error treatments, and the broken society that has failed us. 

You should know that I’m strong enough to lovingly receive the hate, but not everybody else is. Please think twice next time you are compelled to try ripping someone else into shreds. Ask yourself, does it really make you feel any better?  

When I say “get well soon” -- as I did in my last column -- I wholeheartedly meant it.  I’m living proof that it’s possible, and no one gets to belittle or reduce that in any way. If and when you’re ready to come out of the darkness, I’ll still be here.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

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. 

A Pained Life: Me and My Shadow

By Carol Levy, PNN Columnist

Pain shadows a lot of life's experiences. If I'm pregnant, at some point I'll think about childbirth – and the horrendous pain of labor. But to torture a musical metaphor, at the end of the shadow, the sun will come out tomorrow. At the end of labor, the pain stops, and the happiness of a newborn baby is the result.

If I'm going to have surgery, I may think about the pain that comes after surgery and during recuperation. But I can also be buoyed by the knowledge that at the end of my recovery, the pain of what brought me to a surgeon in the first place and the pain of getting over the operation will be gone.

When I have an appointment with a dentist, just thinking about the appointment is painful for me. The visit means triggering my trigeminal neuralgia facial pain as soon as they ask me to “open wide.”

There will be no sun, just shadows. The appointment will end, but the pain that was triggered will last for hours. I can’t run away from it.

Another dental appointment will have to be made, hopefully later rather than sooner, and I will be forced to invite the pain back again.

Is the pain awful when it is triggered or is it the fear of it being triggered that sets it off? Some doctors will say it is psychological and that fear is causing the pain, not the actual actions that trigger it.

Is this true? Sometimes I like to think it is. After all, if it is fear, then I can try and work on it in my mind, to release myself from its prison. If it is the pain, and when or how they will set it off, I cannot talk myself out of it.

There is no way to negate the reality of the pain or its triggers. The sun does not come out for us and the shadow of fear is not a metaphor. Pain is our reality. The fear of setting it off can be as dark as the pain itself.

That’s something that we and our doctors, colleagues, family and friends need to understand and accept as the truth of our life experience. And the reason we are often unable to participate in life.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.