Holistic Therapy Won’t Cure You, But It Can Help

By Mia Maysack, PNN Columnist 

To mark the end of Pain Awareness Month,  I'd like to share a few holistic therapies that have proven helpful on my journey. 

I’m not suggesting they are magic remedies or that they're the right choices for everyone. Many of us who live with chronic or intractable pain have our minds closed off to new things. And after all we've been through, who could blame us?   

There is an endless amount of misinformation and misinterpretation regarding holistic and preventative medicine, and no shortage of judgement. I'll be honest by confessing that I have also been a skeptic to some extent about holistic therapy, but it has ultimately helped me more than two decades of “mainstream" traditional medicine.  

I'd like to think I have established credibility as it pertains to my own personal experiences, just as I honor anyone else's. Here is what I have learned about holistic therapy:   

Having an open mind and willingness to expand consciousness about the limitations that pain imposes on our lives -- and taking leadership in our own journey – means coping, managing, adapting, transcending and evolving as best we can.  

These therapies don't really work until WE WORK ‘EM and add them to a tool box full of different things to pull from.  Allow yourself the curiosity of what could be possible if you were to try something new. If there are still doubts or if you tried and failed with them in the past, then ask yourself: When’s the last time anything went perfectly right the first time?   

We cannot know unless we try. To have found anything that's assisted, helped or if you're lucky enough to have something that actually works would not be possible without an attempt to try it in the first place.  

The great thing I have found about these holistic therapies is that they have positive side effects, are healthy and habit forming.  

Soaking in Warm Water:  I use generous amounts of Epsom salt (magnesium sulfate) in a bathtub. It creates a soothing buoyancy that makes the body seem weightless.  

Massage Therapy:  Manipulation of soft tissues of the body, consisting primarily of manual techniques, such as applying fixed or movable pressure, holding, and moving muscles and body tissues. 

Mindfulness:  A mental state achieved by focusing one's awareness on the present moment, while calmly acknowledging and accepting one's feelings, thoughts, and bodily sensations. 

Energy Healing:  Also known as Reiki or Qigong, energy healing offers the potential for a positive shift in physiological state and present moment awareness that may alter the perspectives that sustain the burden of symptoms. 

Yoga:  A mind and body practice. Various styles of yoga combine physical postures, breathing techniques, and meditation or relaxation to promote mental and physical well-being. There are several types and many different disciplines. 

None of these are meant to replace any existing care plan, but rather contribute to a well-rounded approach to our whole being and health. Imagine committing the same amount of energy spent fighting against these concepts into exploring ways to incorporate them into your life. You just might find that they help.          

Mia Maysack lives with traumatic brain injury, migraine disease, cluster headache and fibromyalgia. Mia 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. 

Mia was recently chosen as a recipient of the 2021 iPain Community Impact Award for her advocacy work.

Epidemiological Sleuthing During the Pandemic

By Roger Chriss, PNN Columnist

How do we figure out what is really going on with Covid-19? Amid the ongoing surge of Covid cases from the delta variant of SARS-CoV-2, this is very important.

As hospitals are overwhelmed with patients, beds are unavailable, supplies of monoclonal antibody drugs are limited, and frontline healthcare workers are strained. Understanding what is really happening becomes vital to an effective response.

One of the tools most widely used to track the severity of the pandemic is the number of patients that are hospitalized. According to the CDC, we’re currently seeing an average of 9,636 new admissions every day, which is about 14% less than a week ago.   

New Hospital Admissions for Covid-19

But how reliable are these numbers? And just how sick are the patients?

A recent preprint study of VA patients before the delta surge suggested that almost half of hospitalized Covid-19 cases had mild or asymptomatic symptoms. This finding prompted The Atlantic to conclude that the significance of the hospitalization gauge “can easily be misinterpreted.”

As often happens with public health data in the US, information is missing. SFGate recently investigated Covid-19 hospitalizations in the Bay Area and found that simply tracking patient numbers was unreliable. Three major hospital systems -- San Francisco General, Kaiser Permanente and Sutter Health -- could not say if mild and asymptomatic cases made up a large proportion of their Covid patients.

In other words, in many cases hospitals simply don’t have the data needed to assess the severity of outbreaks. We need better ways to validate hospitalization counts and assess local conditions in near real time.  

Fortunately, we have them. Broadly speaking, these include community surveillance, hospital monitoring and indirect signals. Each of these comprises multiple sources of information, and when combined, the result is a deep assessment of Covid conditions.

Carnegie Mellon University’s COVIDCast gives early indicators, including doctor’s visits and symptoms in communities across the nation. This can be paired with public behaviors like masking and distancing, visits to bars or restaurants, local vaccination rates, and searches on Google for Covid symptoms. All of this helps build a risk profile for a community that can be confirmatory for hospitalization data.

Similarly, wastewater epidemiology provides a close look at something all communities produce. For instance, the Sewershed Surveillance Project in Missouri has tracked virus levels in effluent for a year, with spikes often warning of possible outbreaks in cities and counties throughout the state. Wastewater epidemiology is already used in Europe and many parts of the US to help track drug use and disease activity.  

Next comes personnel. Hospital staff is in constant flux, and job postings provide valuable clues about what hospitals are expecting or confronting. For instance, travel nurses move around the US in response to calls for supplementary staff, so job boards like TravelNurse Source offer valuable insight for assessing a hospital’s needs.

The same for respiratory therapists, imaging technicians, and other frontline healthcare workers. Hospitals know their everyday needs, which can be readily found in reports from the American Hospital Association’s Data & Insights database. These reports include the number of staffed beds, admissions, and outpatient visits for most hospitals in the US. If we know what hospitals typically have and see, that allows us to check if they are experiencing a Covid surge.

Further, we have drug and equipment orders. Hospitals have to track all orders for financial and regulatory reasons. So new orders for fentanyl to sedate patients who need intubation, requests for ECMO respiratory machines, or just reordering PPE equipment and other supplies are all readily monitored via federal and state databases.

There are also indirect signals. Hospitals redirecting patients to other facilities, requesting ambulance or helicopter transport, arranging for at-home care for patients they might otherwise admit, or activating emergency plans are all publicly visible, as are signals such as requests for mobile morgues or National Guard assistance.

The above information can be combined to create a reasonably accurate profile of a hospital’s situation. Better, however, is to use such information proactively in order to avoid the severe surges seen in the South over the summer or in Idaho and Montana at present.

Early attempts to use wastewater epidemiology proactively have met with some success. When a wastewater sample from a dorm at the University of Arizona came back positive last year, the school quickly tested all 311 people who live and work there and found two asymptomatic students who tested positive.

All of the above is not limited to the pandemic. The same approach could be used for other infectious diseases, drug overdoses and other areas of public health. If the data streams and information analysis are combined and coordinated, the results could be that much better and more useful.

We cannot and should not rely on a single number, not with so many other tools available to be used. Hopefully we’ll see these tools put to use fast.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

Rare Disease Spotlight: Sarcoidosis

By Barby Ingle, PNN Columnist

This month’s rare disease spotlight is on sarcoidosis. I have many friends living with this complex, autoimmune disorder, which affects about 200,000 Americans.

One of the first visible signs of sarcoidosis is for red bumps and patches called granulomas to form on the skin. Granulomas can also develop in the lungs, lymph glands and other internal organs, causing shortness of breath, abnormal heart rhythm, swollen glands and painful joints. The symptoms often appear suddenly and vary from person to person, depending on which organs are affected.

Although the symptoms usually go away on their own after a few months, the patients I know have lived with sarcoidosis long term. Some are less affected than others, but most people living with chronic sarcoidosis have major changes in every aspect of their body and life activities.

I think it is best to spotlight some of the people in my life who live with sarcoidosis on a daily basis. Frank Rivera and Kerry Wong have a website called Stronger Than Sarcoidosis. Karen Duffy shared her journey with sarcoidosis in one of my favorite books, "Backbone: Living with Chronic Pain without Turning into One."

You’ll see by reading their responses that sarcoidosis is tough to have, but they are tough, too.

How long have you lived with sarcoidosis?

Wong: “I was diagnosed in 2015, but that was after an 8-year search for answers … so I would say probably closer to 14 years.”

Duffy: “I have been living with sarcoidosis for 23 years! It took about 2 years to get a diagnosis of exclusion.”

Rivera: “I have been living with sarcoidosis since 2004, 17 years, but fully diagnosed in 2011. So, 10 years since diagnosis.”  

In what ways has living with sarcoidosis affected your life?

Duffy: “Sarcoidosis has impacted my life in countless ways. I live with neuro-sarcoidosis and I have severe pain issues. I also have Complex Regional Pain Syndrome. I find that the principles of stoic philosophy have really helped me accept that I cannot control what happens, I can only control how I respond.”

Rivera: “I am on disability now due to the bone and joint involvement and the pain I live with is a 6-7 pain level on a pain scale of 1-10, daily.”

Wong: “Oh, so many ways! Because the symptoms can be both severe and so unpredictable, I’m no longer able to work, and have been on disability since 2014. I’ve had to cancel plans with friends and family more times than I can count. And I’ve had to depend on my husband for so much more, for even the little things. But I’m so grateful for how he has stepped up as an incredible caregiver.

And that’s not to mention the emotional toll of the physical manifestations, the anxiety and depression that come from living with chronic pain, fatigue, and disability.”

Have you found anything that was helpful for the symptoms of sarcoidosis?

Duffy: “I believe in the power of the placebo. In Latin, placebo means "I Shall Please." I try to be useful, so I keep up with my volunteer projects. I find reading to help when I am roped to my sofa like Gulliver. On days when I am released from the grip of chronic pain, I love to walk. I follow my doctors’ advice and take my prescription meds.

I have found a pain cream called Tribe Revive---and it works for me! I no longer wear a pain patch, I just rub this CBD infused cream and the relief is instant. I have no connection to the company that makes the pain cream, I am just a very grateful customer. I buy so much of it and give out jars.”

Rivera: “Prednisone helped some, but the side effects almost killed me. Gave me a hole in my colon and diabetes as well as brittle bones.”

Wong: “Yes, thank goodness! Even after all this time, we are still working on finding the right treatment combination to help with my symptoms, but there are a few things that have helped. IVIG (Intravenous Immunoglobulin) therapy; heat and cold therapy; TENS (transcutaneous electric nerve stimulation); eTNS (electric trigeminal nerve stimulator); acupuncture and acupressure; and medical marijuana in a variety of forms.

Aside from that, probably the most helpful thing is learning to listen to my body. When it says I have to rest, I have to rest. Pushing myself to do more, which is what I have always done before, will only make me suffer that much more and that much longer afterward.”

Do you think there is a societal stigma on people living with sarcoidosis and other rare diseases?

Duffy: “I find that living with a chronic, invisible illness has its challenges. The pain from the nerve damage is cataclysmic, and it can be confusing that some days I can walk my dog, go for walks, and socialize with friends. Then other days, I am wiped out and live a smaller, quieter life. On these days, I read and write.”

Wong: “I am not sure if stigma is the word I would use, but there is definitely an additional problem for us. Because most people have never heard of sarcoidosis, they find it hard to understand and try to compare it to things they know. How often do we hear, ‘At least it’s not cancer?’  And because most of our symptoms are invisible, they find it hard to believe what they don’t see. That lack of understanding can have a tremendous impact on both personal and professional relationships.”

Rivera: “Yes, because from the outside we look fine. It is called an invisible illness because it works from the inside out.”

Is there anything you wish the world knew about sarcoidosis?

Wong: “Honestly, the thing I would love for people to understand most is how unpredictable the disease can be. Our symptoms can vary from day to day or hour to hour. That means what we are able to do varies as well. We always see inspirational examples of people who ‘didn’t let xyz stop them,’ but that is just not how it works with an incurable rare disease.

I always strive to do as much as I can to help others, but some days, the symptoms do win. That is not a character flaw or weakness; it is just the fact of the disease. Once those symptoms ease up and I am able to do more, I will always bounce back with purpose.”

Duffy: “I know it can be overwhelming to live with a rare, complicated, multisystem disorder. I have a serious illness, but I do not take it too seriously. Having a painful diagnosis and having a great life is possible. I am grateful for every day.”

Rivera: “Sarcoidosis is when a person's white blood cells become over active from an environmental accelerant. And instead of fighting off colds or foreign substance in the body, they clump together and form masses anywhere in the body as well as skin. This disease is a very painful disease and attacks the physical and mental health of a person.

With sarcoidosis, no two patients are alike. They call it the snowflake disease because no two patients are the same. That makes it very difficult to diagnose as well as treat because each temporary medicine does not work the same for each patient as well. So trying to help a sarcoidosis patient is very tough.”

Getting Help

If you need help with sarcoidosis, you should set up appointments with specialists to add to your treating team. These professionals would include a primary care provider, rheumatologist, pulmonologist, ophthalmologist and dermatologist.

Steroids are usually used to treat sarcoidosis. They reduce inflammation, and can stimulate tissue growth and repair. If steroids don’t work, immunosuppressant medications might be tried to reduce the immune system response. Pain medications may also be prescribed.  

Although the cause of sarcoidosis is unknown, the most widely known theory is it may be due to an immune reaction to a trigger, such as an infection or chemicals in those who are genetically predisposed. I look forward to the day that better testing and treatments exist for this rare disease.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

Another Drug Shortage Caused by Covid-19 Has Me Worried

By Victoria Reed, PNN Columnist

I recently read a news article about the Food and Drug Administration issuing an emergency use authorization for Actemra (tocilizumab) for the treatment of hospitalized covid-19 patients. The medication was originally developed as a treatment for rheumatoid arthritis (RA), one of the chronic pain conditions I live with.  

Actemra is a biologic drug that calms down overactive immune systems by blocking the interleukin-6 (IL-6) receptor. Persistent dysregulated expression of the IL-6 receptor is involved in the pathogenesis of RA and other chronic inflammatory and autoimmune diseases. It is believed that this over-activation of the IL-6 receptor is also responsible for the so-called “cytokine storm” that causes severe illness and death in covid-19 patients.

The symptoms of RA are pain, fatigue and swelling in the lining of the joints and other parts of the body, including the heart, lungs and eyes. This inflammation can lead to disability, joint destruction and cause serious damage to the lungs and heart.

I have had long-term success controlling my RA symptoms with Actemra and have been getting the drug by IV infusion monthly for about 8 years. Prior to that, I didn’t have good control with other biologic meds such as Enbrel and Orencia.

When I read that news story, I was initially only mildly concerned about Actemra becoming unavailable. Nevertheless, I contacted my doctor for confirmation that I was still on track for my upcoming monthly infusion. However, she did not and could not confirm that the medication would be available to me. Why?

Actemra has now been hijacked by doctors treating covid-19 patients, and this has created a major shortage. I have been informed that its availability for RA patients is uncertain for the foreseeable future. This is really very upsetting!

Covid-19 patients are using up resources in hospitals across the country. The overwhelming needs of these severely ill patients are causing other patients who need surgery or have treatable illnesses to die from a lack of available resources. Hospitals in hard-hit areas are short on everything -- staff, meds, beds and time. As a result, many chronic pain patients like me are being denied the treatments that we rely on to have functional lives. I must say that this seems patently unfair.

What’s even more disconcerting is that Genentech, Actemra’s manufacturer, can’t say when the shortage will end and expects “additional intermittent periods of stockouts (lack of supply) in the months ahead, especially if the pandemic continues at the current pace.”

RA and lupus patients saw this happen earlier in the pandemic when word got out that Plaquenil (hydroxychloroquine) might help treat covid-19. That medication also became scarce and was inaccessible to patients with autoimmune conditions for a while.  

One thing for sure is we are all very tired of the covid virus and its variants. I understand that doctors and scientists are desperate to find things that work, and they want to save lives. But I rely on Actemra to help relieve my pain and fatigue and keep damaging inflammation down. It is the mainstay of my treatment.  

Due to the Actemra shortage, I may have to consider other medications that might not work as well or just wait out the shortage and hope my disease activity doesn’t become unbearable.  

If the pandemic continues, many more people are going to lose their lives from covid infections. However, all patients deserve an equal chance at receiving the care they need, including chronic pain patients. The pain community is already suffering from opioid hysteria and many of us have to fight to stay on these pain medications. We shouldn’t have to fight for our other meds too! 

RA is a serious, systemic and often misunderstood condition that can shorten a lifespan by many years if not treated aggressively and with the proper medications.  Patients sometimes go through many trials of medications before finding one that relieves symptoms and arrests disease activity.  

I truly hope this shortage is short-lived -- for myself and others like me -- who rely on Actemra to remain functional and productive.  

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.

A Pained Life: False Narratives About the Opioid Crisis

By Carol Levy, PNN Columnist

The common belief that any patient who takes opioids for pain relief soon becomes addicted seems to have started in 2003, when The Orlando Sentinel published a front-page series under the headline "OxyContin Under Fire: Pain Pill Leaves Death Trail.”

The newspaper used the term "accidental addict" to describe patients who "put their faith in their doctors and ended up dead, or broken."

This characterization quickly became the go-to description for most news articles on the emerging “opioid crisis.” An innocent person, often a teenager on the cusp of life, suffers a painful injury. Their doctor prescribes OxyContin or some other highly addictive opioid and their lives are forever changed. They take higher and higher doses, become addicted, and die from an overdose.

Four months after publication, the Sentinel printed a correction. Two patients profiled in the series as “victims” were not newcomers to opioids, as they had been portrayed. They were using illegal drugs and abusing prescriptions long before their first dose of OxyContin. The Sentinel series also grossly overstated the number of overdose deaths that were caused solely by oxycodone, the active ingredient in OxyContin.

The problem was that the presentation of someone falling so far so fast due to prescription opioids remained irresistible to the media. It became the common narrative, especially in “recovery” stories about someone becoming addicted due to thoughtless opioid prescribing by a doctor or dentist.

This helped create the false belief that people in pain become addicted, very quickly and easily, to opioids. The lie took hold, even though a 2008 study found that chronic pain patients taking opioids had a rate of abuse and addiction of only 0.19% — less than one percent.

In 2015, another study was released that reinforced the false narrative. People in chronic pain on long-term opioid therapy had a “misuse” rate between 21 to 29 percent; and their addiction rates averaged between 8 and 12 percent.

Those are horrible numbers. And very misleading. Shortly after the study was published, the researchers admitted they may have exaggerated the potential for addiction.

“We agree that opioid use is not inherently risky, most patients seem to use opioids without misuse or addiction,” said lead author Kevin Vowles, PhD, a Professor of Psychology at the University of New Mexico.

But that kind of clarification we do not hear in the news. Instead, the story is still about patients prescribed opioids becoming addicted and fueling the opioid crisis.

Often ignored by the media is that opioid prescriptions have been declining for a decade and that most overdoses are cause by street drugs. Or that medical students now get more training in pain management. This may actually be the best and safest time to prescribe and receive opioid prescriptions. 

Most of us bemoan and rant against the CDC opioid guideline, and because many of our doctors feel intimidated by the DEA and state medical boards, fearing arrest and prosecution if they prescribe opioids. 

Maybe, though, the place we need to start is with the media, and getting them to tell the true narrative: most pain patients do not become addicted. 

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.

Finding Life in the Midst of ‘The Pain-Cancer Connection’

By Cynthia Toussaint, PNN Columnist

In 2019, when I first heard my worst diagnosis, Triple-Negative Breast Cancer – yes, the rare and aggressive kind – I instinctively knew it was tied to my 37 years of high-impact pain. Indeed, for a couple of decades, I’d commented often to my partner, John, that I didn’t understand how my body could take the toll of never-ending torture without getting terminal cancer.

Like so many of us with pain, my chronic depression kept me wondering if that scenario might be a blessing. In fact, my greatest struggle was endlessly debating whether life with pain was worth living. 

Here’s the stunner! After hearing my grim diagnosis, I ultimately deduced it was. So much so, not only did I choose to fight, I took a deep dive into discovering the best chance at surviving my cancer well with the quality of life I still had intact. In short order, I armored myself with a boatload of education and committed to using integrative care all the way. Making bold, unconventional treatment decisions upped my chances to stay on the planet.

I won’t sugar-coat it; fighting breast cancer while trying to keep 19 overlapping pain and fatigue conditions in check was the hardest thing I ever did, and the jury’s still out as to whether I’ll survive. But I’m damn happy and proud to be here today, and want to share what I’ve learned.

Enter “The Pain-Cancer Connection,” the theme of For Grace’s 2021 Women In Pain Conference on Friday, September 24.

Last year when I sat down via Zoom with my sisters in pain that make up For Grace’s event planning committee, I was in the midst of chemo, bald and very ill. After pitching the theme and telling these badass women about the connection between pain and cancer, I was deeply touched that they wanted to move ahead.

None of these women have had a serious cancer diagnosis, and executing a conference, especially in the midst of COVID, is damn-near impossible work. I love these women! They play a critical part in helping me turn suffering into meaning, my primary life force.

CYNTHIA TOUSSAINT

As some wise woman shared, “All good things come in time.” As such, this virtual conference is a year late due to my rough recovery. That’s another thing about my sisters – they unconditionally supported, even insisted on, my need to take time to ramp up to this frenetic pace.

Well, here we are, and what a first-of-its-kind day we’ve got in store.   

After a warm welcome from our Director, John Garrett, I’ll start by divulging my cautionary tale with cancer treatment. Oh boy, I’ve got a ton to say about western medicine failing miserably at every turn – and how taking control of my cancer care got me this far.

Next up, integrative oncology chaplain Michael Eselun will share a touching, personal story about loss and letting go. Michael is a gem of a storyteller who brings his audience to laughter and tears, whilst stepping into the dark side with ample tenderness.  

Sprinkling in some For Grace vibe, woman in pain and comedian Anna Polack will drop a witty take on the self-help movement. Later, she’ll host interactive “fun breaks” to bring in lightness.

Also, throughout our day, we’ll spotlight woman in pain and artist Radene Marie Cook’s exquisite pieces that depict the pain-cancer experience in endless passion and color.

Then we’ll launch into our four themed sessions: Problem, Solution, Experience and Moving On.

Dr. Wayne Jonas, Executive Director of the Samueli Foundation’s Integrative Health Programs, will present the “Problem” – how the inflammation of pain can lead to cancer and how cancer treatment can spark persistent pain. Dr. Jonas will also delve generously into the benefits of integrative care. His brilliant, positive take on healing is eye-opening, and I’m forever grateful for his steady guidance.

The “Solution” session will kick-off with one of my all-time favorite people, Christin Veasley, co-founder of the Chronic Pain Research Alliance. Simply put, Chris is the best, full of information and care. She’ll explore effective tips about how to become your own best advocate, including how to partner with your practitioner for best outcome.

Next up, one of my heroes, Dr. Keith Block, founder of the Block Center for Integrative Cancer Treatment, will go in-depth about how to keep one’s “terrain” healthy throughout active cancer treatment as well as the all-important post period to avoid a recurrence. Tragically, western medicine doesn’t acknowledge the terrain, but this is the stuff that saved me! In fact, Dr. Block’s book, Life Over Cancer, was my bible during treatment.

Dynamite wellness expert and fellow sister in pain, Dr. Susan Nyanzi, will follow with how common-sense, self-care lifestyle choices can help prevent most cancers. I say, “Amen to that, Dr. Nyanzi!” Just wish I’d heard this talk five years ago.

A dynamic panel of real-life pain and cancer patients will make up our “Experience” session. Moderated by the no-holdin’-back Rhonda Smith, breast cancer survivor and executive director at California Black Health Network, these folks will share, with us and each other, inside advice about getting best care, handling adversity, the importance of self-management, and improbable “gifts” along the way.         

We’ll end with the inspiration to “Move On” despite the challenges of these epic diseases. Yes, it’s all about hope and movement with Dr. Melissa Cady, DO. Also known as “The Challenge Doctor,” this force-of-nature will teach us how to reframe illness and use movement to find joy and less suffering.   

To put a bow on the day, cancer survivor and Bump In the Road podcaster, Pat Wetzel, will share how illness and misfortune drove her to transform her life into one of helping others, traveling the world and prompting folks to hit the road to find wellness and meaning. Seriously, there are no brakes on this full-speed-ahead woman, guaranteed to inspire! 

There’s no denying that cancer and pain are upending, life-altering, sometimes terminal diseases. But as this conference will illuminate, we can fight the good fight with dignity and grace.

Last year, during my darkest hours of chemo and COVID, when I actually forgot why I wanted to live, people from my circle of support bolstered me by phone, email, text and good ol’ snail mail, to keep me keepin’ on. Truly, I don’t know if I would have made it without them.

I want this conference to be that kind of support system for those who are wrangling with pain, cancer or both. I want its shared education to make it possible for one disease not to springboard into another. I want the day to remind us that there’s enough love in this world to make life worth fighting for.

Seeing so many beautiful people come together, volunteering their time to help others avoid my fate, humbles me – and makes my heart swell.    

I look forward to connecting with you on Friday, September 24 at 9am PDT (12pm EDT). You can watch the entire conference for free on our YouTube channel.      

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 nearly four decades, and became a cancer survivor in 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

Misogyny in Medicine Harms Fibromyalgia Patients

By Dr. Denise Phan, Guest Columnist

Anyone who has practiced medicine or been involved in women's health in the past 50 years has encountered fibromyalgia in one form or another. Many of us have seen the fibromyalgia pendulum swing from under-recognition to over-diagnosed, and back to under-diagnosed again.

Although the course of fibromyalgia mirrors our society's recognition and treatment of pain in general, this particular disorder is also handicapped by its association with women. Since women were not part of the medical and research establishment until recently, diseases that affect women exclusively or predominantly have often been ignored or downplayed. 

Admittedly, fibromyalgia is not an easy diagnosis to make and has no reliable treatments. It is also not progressive, does not cause permanent muscle or joint damage, and does not directly cause early death. Until recently, there were no easy blood markers for fibromyalgia as with other rheumatologic diseases. No x-rays or MRI findings can help diagnose it. 

But the main problem with fibromyalgia was that the vast majority of patients who present with this syndrome of widespread pain and tender points are women.

Thus, it was easier for the arrogant and sexist wing of medicine to relegate fibromyalgia to the "histrionic" or "psychogenic" disorders that predominantly affect women. 

DR. DENISE PHAN

Other examples of severe disabling painful conditions that affect women more than men are endometriosis, pelvic pain, polymyalgia rheumatica, migraine, lupus, scleroderma, and trigeminal neuralgia. Some of these disorders are just now being recognized, researched and beginning to get treated. 

Though the term fibromyalgia was first coined in the 1970s, the disease can be traced back thousands of years to biblical times. When I was going through medical school and residency training in the 1980s, many of my attending physicians refused to recognize fibromyalgia as a "real" disorder and often did not offer any treatment for it. 

To some degree, this was due to our poor understanding of how the nervous system affects musculoskeletal tissue. But in the vast majority of cases, the refusal to acknowledge fibromyalgia stemmed from the undercurrent of misogyny that permeates medicine even today. 

Learning How to Treat Fibromyalgia

There were others in the medical community who recognized fibromyalgia and taught me what it was, how to diagnose it, and how to treat it -- despite our very limited, almost non-existent treatment options at the time.

In the 1990s, when I started my private practice in California’s San Fernando Valley, my practical education of fibromyalgia was furthered by the multiple women who presented in my office with this puzzling, intractable disease. Since there were no FDA-approved treatments yet, we would try every and any off-label treatment possible to see if we can get any long-term or even short-term relief of symptoms. 

There were the traditional trials of NSAIDs, tricyclics like amitriptyline, trazodone, SSRI's, low dose opioids, muscle relaxants, warm water physical therapy, trigger point injections; and then the non-traditional treatments like guaifenesin, anti-inflammatory diets, acupuncture, yoga, tai-chi, sauna, infrared therapy, cannabis, low dose naltrexone and moving to a warm, dry climate. 

Although none of these treatments are highly effective; when they did work it was a tremendous relief to restore function to these long-suffering patients. Despite this, I would still occasionally learn of suicide threats and attempts by fibromyalgia patients who did not respond to any of these treatments. 

These patients pushed me and other doctors to treat pain seriously; so that it does not become a cause of other morbid pathologies such as depression, fibro fog, cervicogenic headache, irritable bowel, overactive bladder and chronic fatigue. It also emboldened us to use stronger opioids, if necessary, to control chronic pain. This coincided with the release of longer-acting opioids like MS Contin, fentanyl patches and OxyContin. 

As the recognition of fibromyalgia went mainstream in the 2000s, so did the push to control pain more aggressively with higher doses of opiates. Laws were passed and guidelines were published, urging physicians to treat pain seriously. Physicians were taught, in one seminar after the other, that longer-acting opioids would control pain throughout the day with less need for pill-popping. This would provide more stable blood levels and less euphoria, making opioids less habit-forming and minimize addiction potential. 

In the late 2000s, Lyrica was the first medication specifically approved for the treatment of fibromyalgia, followed in quick succession by Savella and Cymbalta. Fibromyalgia patients benefited from the increased recognition and treatment of their disorder and the aggressive approach to pain control. 

Many of my patients who didn't respond to off-label treatments achieved remission with the new FDA-approved meds. Some who didn't were eventually stabilized on higher doses of hydrocodone, oxycodone, Dilaudid, methadone, buprenorphine, morphine or fentanyl. Some of the more severe cases were able to get off oral meds and restore normal daily function after we implanted subcutaneous pain medicine pumps. 

A New Betrayal

Then in the early 2010s, reports of rising death tolls from opiate overdoses began coming in, often involving drug seekers who were crushing and snorting OxyContin tablets to get high. It was also recognized that patients on chronic opioids were at risk of accidental overdose.

In response, more cautious opioid prescribing guidelines came out from state medical boards and the CDC; followed by the DEA prosecuting pharmacies and pain management doctors. One pain clinic after another started closing down, their patients were often red-flagged and unable to find new doctors. Vast numbers of patients became collateral damage as the news media and legal profession fanned the flames of the war against opiates. 

For chronic pain patients in general, the lack of access to pain meds required them to make serious adjustments to their lifestyles, like not getting out of bed, not holding a job, and not taking care of their family. For many fibromyalgia patients, it was as if the doors to treatment were slammed shut. 

The latest betrayal for these patients is coming from the medical and academic community itself. I was horrified and shocked at my last pain management seminar when the young professor lecturing on the topic of fibromyalgia stated aloud the official current policy of the medical community is that there is no role for opioids in treating fibromyalgia. 

When asked what we should do for patients who have failed all the recommended treatments, FDA-approved and otherwise, he could only recommend yoga. That was when I realized that misogyny was back in style. The medical community has been cowed by “opiate hunters” into toeing the line and spouting what is essentially a ludicrous theory: the idea that we should not use pain medicine in the treatment of chronic pain. 

This is what is being taught today in medical schools all over the country. The next generation of physicians is being trained to think that it's okay to leave people in chronic pain day after day, when there are good medicines available that, when used judiciously, may be able to restore life and function to an incapacitated patient. 

Obviously, there is the risk of serious side effects from opioids, just as there are for any powerful medications. But that is what we are trained to do, to take into account these side effects for each individual patient, to evaluate the risks versus benefits of each treatment, and to monitor them as best we can. That is what my Hippocratic Oath tells me to do. 

Now, if only we can get through to the other less misogynistic side of the medical community. The ones with enough courage to speak truth to power. There are some of them in medical schools and ivory towers everywhere, who can recognize injustice and who will speak common sense to our future doctors. 

Dr. Denise Phan is an Internal Medicine physician in Los Angeles. She works in private practice in the San Fernando Valley and is on staff at Valley Presbyterian Hospital. Dr. Phan is active in the annual missions of the mobile health units of the Social Assistance Program for Vietnam and the International Humanitarian Mission.

How I Learned To Live With and Manage Chronic Pain

By Beth Thorp, Guest Columnist

The CDC estimates that 50 million Americans – just over 20 percent of the adult population – have chronic pain.  About 20 million have “high-impact chronic pain,” which is defined as pain severe enough to frequently limit life or work activities. I am one of the “high-impact” ones.

For a long time, I did not believe that I had enough expertise or a unique enough story to share my experiences with pain, except with those closest to me.  But because of how often people tell me, “I don’t know how you do it!”; I began to believe that sharing my struggle to live with and manage chronic pain might help others who also suffer from it.

Like many others with severe chronic pain, I have had experience with using opioids.  Given the crackdown on doctors prescribing these medications, I felt that sharing all the other skills I use to manage my pain might be useful to other patients. 

I believe there are three aspects of our health which must be addressed if we are to have full and productive lives despite our pain. These are physical health, mental health and socialization.

Three-Part Model for Pain Management

Physical Health

When pain begins, the first and logical area to address is our physical health. It’s important to me to rely not just on pain medication, but a wide range of other modalities. These include:

• Physical therapy, including heat, ice, ultrasound, stretching, exercises, TENS

• Injections of steroids and analgesics

• Neuromodulation devices such as spinal cord stimulators

• The use of support tools, such as canes, walkers, wheelchairs, etc.

Some activities, like stretching, might be easy to incorporate into your daily life.  Exercise might take some trial and error to find types that help with pain and that you enjoy. Others, like using a wheelchair, might take overcoming the burden of stigma.   

For me, the idea of getting a wheelchair was initially out of the question.  But then my pain doctor suggested that it would be better to use one to travel in places like airports, museums and zoos so that I can better enjoy the experience, and have less pain during and afterwards.  Once I thought of it this way, it was an easier choice.

Mental Health

As my pain persisted, despite many physical and medical treatments, it became clear to me that I needed some additional resources to help my mind and spirit.  These treatments used to be considered outside of traditional Western medicine.  Additionally, these methods often require out-of-pocket payment. Some examples are:

• Counseling, talk therapy, hypnosis, Reiki

• Meditation and mindfulness

• Participation in activities designed to distract from the pain

• Antidepressant medications

• Focusing on the positive

There are other therapies which address both physical and mental health, including yoga, Pilates, acupuncture, therapeutic massage and tai chi. 

I rely more on distraction than on any other technique.  If one activity does not work, then I will go to another.  When I first heard about distraction, I did not believe that it would work -- but it really does.  Even getting out of one environment into another can help. 

I am still working on the technique of focusing on the positive rather than the negative.  I know this sounds a bit Pollyanna, but I believe it is important to move ahead with a good quality of life.  The goal is to be grateful for the things I can do, not ruminating on the things I have lost or can no longer do. Some examples of this are:

• Take “one day at a time.”  If today is bad, tomorrow is likely to be better

• Try new activities that fit within the scope of your current abilities

• Learn new skills or explore new areas to learn by taking classes, in person or online

• Find others who suffer from chronic pain and share ideas for living better

• Most of all, don’t give up! 

Socialization

The longer pain goes on, the more isolating it can be. I’ve experienced loneliness and solitude. Our world gets smaller as the number of things we can do shrinks and the things we can do become very restricted. 

One of the hardest things for many of us is to ask for help. Similarly, we don’t want to be a burden, so we don’t reach out to ask our friends and family to come over and spend time with us. 

In order to maintain a good quality of life, we must find our own ways to become or stay involved with others.  For example:

• Phone calls or Skype, FaceTime and Zoom meetings with family and friends

• Group activities such as book clubs, crafting circles, games nights, group lunches

To address mental health as well as socialization, joining a religious group, community organization or chronic pain support group can be very helpful.  You can also combine socialization and physical health with activities such as exercise classes or Silver Sneaker programs.

Three Changes Needed

I believe that there are three changes to our healthcare system which must be pursued in order to respond to the opioid crisis in ways that help patients with pain, not hurt them.

First, don’t punish patients by removing access to opioid medications. For some of us, they are the only thing that works. Work with us to help us take them responsibly. 

Second, the pharmaceutical industry should develop safe, effective and non-addictive pain medications for those of us with high impact chronic pain. 

Third, insurance companies should be required to pay for alternative treatments such as massage, acupuncture, yoga, etc. that are often recommended as alternatives to opioids. Those options are not really available to most patients with pain.

Chronic pain may last a lifetime.  Thus, it is critical to find ways to live a full and happy life despite the pain.  Different methods work for different people.  I believe that the most important thing is to try everything you can.  If one doesn’t work, try another.  Be sure to include physical, mental and social solutions.  And try to stay as positive as possible.  That’s how I do it.  You can do it too! 

Beth Thorp has lived with chronic pain from sciatica, neuropathy and osteoarthritis for almost 25 years. She’s had multiple back surgeries, including two implanted stimulators.

Beth worked for 34 years in the pharmaceutical industry, including as a partner in her own consulting firm. She is now retired and spends her time with her family, as well as knitting, quilting, reading and exercising.

PNN invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org

Infighting in the Pain Community Made Me Leave Advocacy

(Editor’s note: The pain community lost another one of its advocates this week – not to chronic pain or illness, but to frustration and despair. In a Facebook post, Caylee Cresta said she would no longer be an advocate for people in pain because of chronic infighting and toxicity in the pain community.   

For those who don’t know Caylee, who we profiled in a 2018 PNN article, she is the creator of a series of videos on YouTube and TikTok that explore everything from makeup and relationships to the stigma faced by pain patients and their fear of pharmacists. Caylee’s entertaining videos offer a way for people outside the pain community to see how opioid hysteria has disrupted pain care for millions of patients. Her Facebook post is republished here with Caylee’s permission.) 

By Caylee Cresta 

For my fellow spoonies: I’m going to address this once, and once only. I hear you guys, I know you’re waiting for chronic pain content; but unfortunately, it’s not coming (at this time, at least).  

Rare disease, chronic pain, and the stigma surrounding opioid medications have plagued my life for over a decade at this point. I am not nearly alone in that, and hundreds of thousands of people are suffering daily. That cause is so close to my heart, and will forever be, and it is still something I deal with daily as well.  

When my life was turned upside down as a result of that stigma, I found a community advocating, fighting, and spreading awareness. I met some of my favorite people as a result and made what I believed at that time would be lifelong friends.  

However, that community is by far the most toxic I have ever seen in my life. There is a power struggle that will swallow any attempt at good, and an ugliness that will destroy progress. It will scare any true advocate enough to walk away. The lies I heard spread about myself, my character, and my family were enough to make me sick.

CAYLEE CRESTA

I want you to ask yourself, if someone is fighting for a cause they truly believe in, should they have to defend themselves more vehemently than the crisis at stake? The toxicity doesn’t allow anyone to focus solely on the action of advocacy, and you beat each other down more than any opposition ever could.  

I don’t expect a word of this to change anything, but I do feel as though I owe many of you an explanation for my absence. I can only hope that I will be able to create some change at some point on my own, but that is not a decision I will make today.  

I love creating more than anything in the world, and I let the toxicity of the chronic pain community rob me of that for years. The chronic pain community caused me more pain than the stigma I hoped to fight.  

I remember my first days in the chronic pain community clearly. I remember people saying that they never made any progress. While I hate to be blunt, I think the answer is abundantly clear.  

You will never have the numbers because you constantly let people be torn down and excommunicated. Your viscous behavior will take any passion for this cause and swallow it whole, all before spitting out the shell of someone who was once excited to advocate. You don’t see passion as inspiration, you see it as competition. 

I spent my own resources, offered my assistance to all, and spent hours in hopes of offering support and change, and instead I got hate. I see everyone post the suicide rate with grave concern, and yet you will encourage it with rumors, falsehood, and lies.  

The very people that once called asking for help became my enemy without a word, question, or otherwise. And while I could go on forever, I only ask this: If you see another passionate advocate excited to create change, protect them and don’t let them be destroyed as you did me.  

This isn’t about me, it’s about patients, but the chronic pain community seems too often be about anything but. 

If you take anything from this post, let it be this: you have to care more for this cause than you hate one another. And with this, I close that chapter of my life forever, and I wish you all continued love, happiness, and comfort.

How Pacing Can Stop the Boom-Bust Cycle of Pain

By Gabriella Kelly-Davies, PNN Columnist

Many people living with chronic pain are stuck in a boom-bust cycle. I was one of them until I took part in a multidisciplinary pain management program and learned how to pace my activities and exercises.

On the good days when our pain level is low, we try to catch up on doing all the things we couldn’t do when the pain was bad the previous day. But this can cause a flare-up and the natural response is to rest or take a pain medication. Once the pain eases, we might try again, only to repeat the pattern of overactivity, flare-up, rest, easing of pain, then overactivity.

When this happens repeatedly, we can become frustrated and despair of ever being able to live a normal life. It becomes difficult to plan ahead because we never know how we will be on any day. Over time, there are fewer good days and more bad days and we feel as if we have lost control of our life. We become so afraid of causing a flare-up that we avoid any activity that aggravates our pain.

The end result is that our bodies lose conditioning and become less able to cope with a higher level of activity. Muscles weaken, joints stiffen, and less and less activity causes a flare-up.

The good news is that we can use a pain management technique known as pacing to increase our activity levels without stirring up the pain. Pacing involves starting at a level of activity that doesn’t aggravate our pain, breaking up tasks into smaller steps, gradually increasing the amount we do, and taking frequent, small breaks. Over time, it is possible to increase our tolerance to a range of daily activities and exercises. 

Set Goals and Build Up Gradually

Pacing can be applied to everything you do. If sitting increases your lower back pain, try to use pacing to build up your sitting tolerance. You can also pace exercises such as walking and swimming, and use it to increase your tolerance to activities such as housework, gardening and driving.

The first step is to decide which activities or exercises are your priorities, then determine your baseline tolerance to them. A starting point 20 percent below your current level is a general rule of thumb. If sitting exacerbates your lower back pain, determine how long you can sit comfortably. If you can sit for five minutes without triggering a flare-up, set your baseline at 80 percent of five minutes, which is four minutes.

Once you know your baseline, set short and long-term goals and record them in a chart. Each day, increase the time you do the activity or exercise by a predetermined small amount.

If your long-term goal is to sit and watch a movie for two hours without causing a flare-up and your baseline is four minutes, your short-term goal might be to increase your sitting by one minute each day. At the end of the week if you can sit comfortably for 10 minutes, you can repeat this pattern for the following weeks until you reach two hours. However, if you find that increasing by one minute every day stirs up your pain, try increasing by one minute every second or third day.

Record your progress in a chart like the one below so you can see how much you are building sitting tolerance.

SHORT-TERM GOALS

SITTING PROGRESS

Break Up Activities

Pacing also involves breaking up tasks into smaller amounts that don’t cause a flare-up. If carrying heavy bags of groceries from the supermarket exacerbates your back pain, try buying smaller amounts of groceries more often. For example, go to the supermarket three times a week and buy small amounts rather than doing one big shop each week.

Taking short and frequent breaks is another way of gradually building up your tolerance to an activity. For example, if you can weed your garden for 10 minutes without flaring up your pain, make your baseline 80 percent of 10 minutes, which is eight minutes. Work in the garden for eight minutes, rest for 15 to 30 minutes, garden for another eight minutes, rest for 15 to 30 minutes, and so on. During your rest period, it’s a good idea to practice your relaxation exercises and stretches.

As your tolerance to gardening increases, you can gradually build up the time you garden before you rest.

Fine-Tuning Your Plan

Pacing is a process of trial and error, and your initial goals might need to be fine-tuned if you find that pain interferes with you achieving them. Try to be patient and don’t overdo it. It’s better to take baby steps and achieve your goals than to race ahead and fall back into the boom-bust cycle.

It’s crucial you stick with your plan each day. If you are having a good low-pain day, don’t be tempted to increase each activity for longer than the predetermined time because you might risk flaring up your pain. On the other hand, if you are having a bad day, try to stick with your goals for the day, but take brief breaks and do your relaxation exercises and stretches during the breaks.

Pacing is an important part of an armory of pain management strategies. Like other multidisciplinary pain management approaches, it takes time to learn, but once you master the technique, it will put you in control of your day rather than your pain level dictating what you can and can’t do.

By keeping to your plan in a disciplined way, you will gradually build up your tolerance to activities of daily living and leisure. With practice, you, rather than your pain level, will determine how much you can do, giving you more control and a better quality of life.

Gabriella Kelly-Davies is a biographer who lives with chronic migraine.  She recently authored “Breaking Through the Pain Barrier,” a biography of trailblazing Australian pain specialist Dr. Michael Cousins. Gabriella is President of Life Stories Australia Association and founder of Share your life story.

Why the Pain Community Should Support Voting Rights Legislation

By Dr. Lynn Webster, PNN Columnist

I believe to my core that all people should be able to vote without experiencing intimidation or hardship. People who are in chronic pain -- many of whom require opioids to enjoy any quality of life -- live outside of society's safety net. They don't run for political office because they can't. They don't make the laws that oppress them. And now they're in danger of being unable to vote against those laws.

The House of Representatives recently passed H.R. 4, which is a revised version of the John Lewis Voting Rights Advancement Act. The bill is designed to restore provisions of the 1965 Voting Rights Act that were diminished by the U.S. Supreme Court in 2013 and further gutted last year. Essentially, the court’s 2013 ruling allowed some states to change their election laws without receiving federal approval. While H.R. 4 passed the House on a party line vote, it now faces opposition in the evenly divided Senate.

H.R. 1, the For the People Act 2021, is another voting rights bill that is being considered. It would ensure same-day voter registration and early voting throughout the country for national elections. This flexibility is precisely what many people in pain need. The law also attempts to correct the corrupt gerrymandering that contributes to the country’s hyper-partisan divide. This bill would also be important to support.

Voter Suppression Impacts the Most Vulnerable

On August 28, I marched in Salt Lake City in support of easier and more practical ways to vote and to protect the right of everyone to participate in our democratic process. When I attended this rally, I learned that voter suppression is a much broader problem than I had realized. It isn't only an issue involving people of color. Intentionally or not, voter suppression prevents many subsets of Americans from having a voice in our democracy.

Although the voting rights movement has been championed mostly by people of color, everyone should be involved. This affects all of us. It targets people who are poor and can’t afford to take a day off to vote, and those who can't leave their home because they can't pay for childcare, are caregivers for the elderly or sick, or are sick or disabled themselves. People with severe, disabling pain and those who provide care for them are affected by voter suppression laws as much as those of any other minority. 

During my walk from Utah’s state capital to Washington Park on that hot Saturday, I realized my 40-minute hike was nothing compared to the challenges that many had to endure during the last election, and may have to experience in future elections, including waiting for hours. I was sweating and thirsty. Fortunately, the organizers provided us with cold water. Others may not be so lucky.

In Georgia, restrictions have recently been passed to prevent voters standing in line from receiving water. The laws also limit absentee ballots and the number of ballot boxes, which makes it more difficult for caregivers, the disabled, and people with disabling pain to vote.  

As I marched, I began to wonder how people in pain would be able to tolerate standing in a long line. How could people who use a wheelchair or walker, or who suffer from chronic migraine headaches, fibromyalgia or severe arthritis, endure the wait? Even healthy senior citizens and others who must void their bladders frequently may be unable to stand in a long line to have their voice heard.

If one person’s rights are diminished, the rights of all people are diminished. These restrictive laws are unnecessary and it would be an injustice for us to allow their passage.

The Pain Community Needs a Voice

There are 20 million people in the U.S. with disabling pain. This represents more than 12 percent of the total number of people who voted in the last presidential election. That is more than three times the difference in votes between Biden and Trump. It is a consequential population.

Pain and addiction don’t preferentially affect Republicans, Democrats or Independents. They harm all people equally, and people with pain and addictions are not tied to any political tribe.

People in pain do not have a collective political voice. They have been marginalized and forced into the darkness. People with substance use disorders also have been silenced. Our drug laws are punitive and utterly disastrous. The only way to change this is by voting for those who will represent our interests.

Therefore, it's important for the pain and addiction communities, regardless of their political allegiances, to support the John Lewis Voting Rights Act. The law would help restore the rights granted under the Voting Rights Act of 1965 and empower the federal government to enforce those rights.

What We Can Do

I suggest everyone call or email their senators, even if their senators support the bill. They need to know where their constituents stand. If possible, join and donate to an organization fighting for your right to vote. Write an op-ed for your local newspaper or media outlet expressing your views on how to make it easier, not harder, for you to vote.

Disenfranchised people are in danger of losing their right to vote, and people in pain are an important constituency. Forming a collective voice to advocate for all people who suffer chronic pain is just as important, although it is a topic for another day. The time to support these voting rights bills is now…before it’s too late.

Lynn R. Webster, MD, is a Senior Fellow at the Center for U.S. Policy (CUSP) and Chief Medical Officer of PainScript. He also consults with the pharmaceutical industry. Lynn is author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die.

You can find Lynn on Twitter: @LynnRWebsterMD.

The Tangled Mess of Prescription Opioid Guidelines

By Roger Chriss, PNN Columnist

The opioid overdose crisis has impacted medical practice in unanticipated and unfortunate ways. A recent JAMA study warned that efforts to reduce opioid prescribing through tapering raises the risk of overdose and mental health crises in pain patients on stable, long-term opioid therapy.

This study is the latest to find that opioid tapering is fraught with risks. Amid this, the American Medical Association has issued a call to revamp the CDC’s problematic 2016 opioid prescribing guideline because of its “devastating” impact on pain patients.

“The CDC should remove arbitrary thresholds, restore balance and support comprehensive, compassionate care as it revises the guideline,” wrote AMA news editor Kevin O’Reilly.

But revising the CDC guideline may not have much effect. The guideline is voluntary and doesn’t have the force of law, but many states have implemented their own guidelines in ways that make them enforceable. They are often paired with requirements and regulations covering everything from daily dose and prescription duration to drug testing, pain management agreements, and tapering. These state guidelines do not necessarily follow the CDC guideline on even basic issues of dose, duration or recommended use.

Some states, including Minnesota and Oregon, have adopted the CDC’s recommended threshold of 90 morphine milligram equivalents (MME) as a maximum daily dose not requiring consultation with a pain management specialist or a special exemption. Other states make their own rules. Washington has kept to 120 MME in its latest guideline update, as has Tennessee.

State policies also differ on the merits of using opioids for chronic pain. The Medical Board of California recommends that physicians and patients “develop treatment goals together” for long-term use of opioids, while Arizona’s opioid guideline flatly warns physicians: “Do not initiate long-term opioid therapy for most patients with chronic pain.”

On tapering, states do not agree much at all and generally do not follow federal HHS guidelines that tapering be individualized and “slow enough to minimize opioid withdrawal symptoms.”

Minnesota’s opioid guideline recommends that physicians “routinely discuss tapering with patients at every face to face visit” and allows for forced, rapid tapers or discontinuation under some circumstances.

Tennessee’s guideline notes that there are “many reasons to discontinue chronic opiate therapy” and “several different weaning protocols outlined by various sources.” It does not recommend any specific one, leaving it up to individual doctors to decide how to taper their patients.

The VA and Department of Defense have their own guideline, which contains a complex set of treatment algorithms that span several pages and effectively exclude almost all patients from long-term opioid use. Further, according to a separate algorithm, the VA is clearly aiming to taper or discontinue opioids in as many patients as possible. The guideline states "If prescribing opioid therapy for patients with chronic pain, we recommend a short duration.”

The Trouble With Algorithms

Many of the state guidelines are paired with a prescription drug monitoring programs (PDMPs) and use NarxCare, a private analytics system that gives individual risk scores to every patient based on their medical and prescription drug history. PNN first covered NarxCare in 2018, noting that patients can be automatically “red flagged” by the system for seeing too many doctors or using multiple pharmacies.

Maia Szalavitz recently wrote about Narxcare in Wired, noting that legitimate patients were being denied medications or abandoned by doctors because of their Narxcare scores.

“A growing number of researchers believe that NarxCare and other screening tools like it are profoundly flawed,” Szalavitz wrote. “None of the algorithms that are widely used to guide physicians’ clinical decisions — including NarxCare — have been validated as safe and effective by peer-reviewed research.”

A similar problem exists for data from PDMPs. A well-documented analysis by Terri Lewis, PhD, found that “machine learning” algorithms are often based on untested assumptions and financial incentives for providers, not on patient care.

“The worst part of machine learning (ML) snake-oil isn’t that it’s useless or harmful — it’s that ML-based statistical conclusions have the veneer of mathematics, the empirical facewash that makes otherwise suspect conclusions seem neutral, factual and scientific,” wrote Lewis. “What the PDMP is NOT designed to do, is detect patients who are using their opioids correctly from patients who are misusing their medications.”

All of the above imposes a significant risk and burden on patients, in particular if they relocate for work or school, or seek medical care outside of their state of residence.

In essence, patients are subjected to a set of federal recommendations from the CDC that may inform some state laws or regulations that are then implemented in a privatized process with little transparency or accountability. Patients simply cannot tell what is happening at the time of implementation, and if they see a problem after the fact, it is usually too late to fix it.

The AMA’s current effort to improve the CDC guideline for opioids is a laudable step forward. But the mess is far larger and more complex, and the role of the CDC is smaller than is generally appreciated amid an abundance of contradictory guidelines and regulations.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research. 

Pain Desensitization: How to Overcome Fear of Chronic Pain

By Gabriella Kelly-Davies, PNN Columnist

Something common to us all is a dislike of pain. Sudden or acute pain is a warning signal that something is wrong. When it strikes, we try to escape from it by taking a pain reliever, distracting ourselves, resting or seeing a health professional.

This approach usually works after an injury or surgery while waiting for the damaged tissues to heal and the acute pain to settle. But it is not as effective for chronic pain when the cause of the pain is a malfunction in the processing of pain signals in the central nervous system, rather than tissue damage.

While chronic pain is not generally a warning sign, the brain may still see it as a threat. It prompts the same avoidance behaviors we use for acute pain. Many people living with chronic pain are so fearful of triggering a flare up, they avoid anything they believe exacerbates their pain. This fear can be so intense it prompts them to leave the workforce prematurely, stop doing usual daily activities such as shopping and housework, and give up doing all the things that previously gave them pleasure.

Australian psychologist Michael Nicholas, PhD, was worried that many of his patients at the Michael J. Cousins Pain Management and Research Centre in Sydney limited their daily activities to avoid pain. Some patients even tried staying in bed all day to prevent provoking their pain.

Nicholas wondered whether an exposure technique used by psychologists to treat phobias such as fear of heights could be applied to pain management. In exposure therapy, psychologists create a safe environment, then gradually expose an individual to the thing they fear. With repeated exposures in a safe environment, anxiety and fear can be reduced.

“I thought exposure therapy might reduce the fear of pain and the resulting avoidance behaviors,” Nicholas told me. “This would mean training the brain to learn not to react to chronic pain. I started encouraging my patients to sit quietly for 20 minutes, acknowledge their pain, but not react to it. After doing this repeatedly over a few weeks, many patients told me their pain was still there, but they were no longer so bothered by it. They lost the urge to escape from it.”

Nicholas described the technique as pain desensitization because his patients were familiar with the idea of pain sensitization, and he thought this could be a way of countering that effect.

For the last few decades, Nicholas and his colleagues have used this approach in the multidisciplinary pain management programs at their center. As with learning any new skill, he says mastering pain desensitization takes a lot of practice.

“You’ve got to practice pain desensitization regularly,” Nicholas explained. “Often people aren’t prepared to do that.” He likens it to lifting weights at the gym to build up muscle strength, something that usually takes weeks or even months.

“If you’re trying to change the way your brain responds to pain; you’ve got to do a lot of workouts. It can take up to two to three months of daily practice to master pain desensitization. But once you get the hang of it, it reduces the distress caused by your pain.”

I learned pain desensitization in 2008 in a three-week pain management program. It took me several weeks of twice-daily practice to fully grasp it, but I soon incorporated it into my usual routine. For years it has been a seamless part of my day, and I practice it regularly, especially when I have a flare-up.

Learning Pain Desensitization

Try making pain desensitization a part of your daily relaxation practice. Close your eyes, take a deep breath and let it out slowly, focusing your mind on breathing calmly. After a couple of minutes of gentle breathing and relaxing, turn your attention to the pain. If you have several painful sites, choose one of them.

While focusing attention on the pain, try not to think about how bad it is. You can’t stop yourself from thinking, but you don’t have to respond to the thoughts. Just let thoughts pass you by like a leaf floating on the stream. Calmly focus on the sensation you call pain and see what happens. Don’t try to change the pain or attempt to make it go away because that is trying to escape from it. Simply let it be there and continue relaxing.

Sometimes the pain might start to feel worse because you are used to trying to escape from it. If this happens, continue with your breathing exercises and any increase in pain will settle. Try to observe your pain as calmly as possible, almost as if it is in someone else’s body. Or imagine you are doing a scientific experiment and focus on the pain like a scientist might observe a leaf or a bug under a microscope. Be as objective as possible, without reacting emotionally to it.

If your mind wanders, bring it gently back to focusing on the pain. Continue relaxing and use your breathing exercises to calm yourself. Keep this up for about 15 to 20 minutes and see what happens. Look at it as a type of experiment and evaluate what you notice. Remember, you’re just allowing yourself to experience the pain that will be there anyway, even if sometimes masked by medications. You aren’t doing anything that can harm you.

By allowing yourself to feel the pain repeatedly, you can habituate to it, because our brains naturally habituate to repetitive stimuli. This effect is similar to what happens when you put a new painting on your living room wall. At first, you notice it whenever you walk past it. But after a while you notice it less. You remain aware that it’s there, but you don’t notice it as much.

Don’t expect too much too soon. Just keep practicing because eventually you will retrain your brain to not respond with alarm to the pain. You’ll find that as you get better at desensitizing, you also become more relaxed when feeling your pain.

Once you have learned the technique, try it whenever your pain starts to trouble you, particularly during exercise or other activities that aggravate your pain. If pain stops you from falling asleep, try desensitizing in bed at night.

Start with a mix of long and short sessions -- two or three 20-minute sessions each day. In between, try brief sessions of one to two minutes whenever you notice your pain or when exercising. After a few weeks it will become a habit and you’ll find yourself doing it without realizing it.

Pain desensitization isn’t a miracle cure for chronic pain. Instead, it is one of the many techniques used in multidisciplinary pain management programs to modify the experience of pain. Importantly, it helps people reduce the impact of pain on their life.

“You have to see it as a training exercise, not as a gimmick,” Nicholas advises. “It’s a skill you’ve got to learn, like learning to play tennis. But as with tennis, once you’ve mastered it, you’ll find you do it automatically without thinking. Many people are surprised by how effective it can be for reducing the distress caused by their pain.”

Gabriella Kelly-Davies is a biographer who lives with chronic migraine.  She recently authored “Breaking Through the Pain Barrier,” a biography of trailblazing Australian pain specialist Dr. Michael Cousins. Gabriella is President of Life Stories Australia Association and founder of Share your life story.

Rare Disease Spotlight: Friedreich’s Ataxia

By Barby Ingle, PNN Columnist 

This month’s rare disease spotlight is on Friedreich’s ataxia, a genetic nervous system disorder, first described by Nikolaus Friedreich, a German doctor, in the 1860’s.

Dr. Friedreich may not have fully understood how genes worked over 150 years ago, but now we know that Friedreich’s ataxia is inherited by children who receive two defective copies of the FXN gene, one from each parent.

People born with Friedreich’s ataxia (FA) usually develop their first symptoms in childhood. They often have difficulty walking, poor balance and slurred speech due to nerve degeneration in their spinal cords. The symptoms are progressive and steadily worsen with time.

As we learned in high school biology class, the nervous system continually carries information from the brain to the body and back again to the brain. The nerves tell our bodies how to move and walk, without us having to think about every step. With FA these sensory signals are disrupted and the brain has difficulty coordinating balance and movement, resulting in impaired function. Fortunately, FA does not affect reasoning and thinking, just the ability to communicate.

There are other types of ataxia diseases, all rare, but FA is the most common hereditary ataxia condition in the United States. According to the National Organization for Rare Disorders, about 1 in every 50,000 people inherit this disorder.  

As I was researching this rare disease, I reached out to a teenager with FA to see how she was handling the symptoms at such a young age. To protect her identity, I will call her Ken.

It has been noted that it takes about 10 years of dedication in an area of study to become an expert on a topic. In Ken’s case, she has lived her whole life with FA and become an expert as her symptoms developed. Ken has difficulties with her balance, coordination and movement. She is on medication, but still has muscle spasms and soreness.

Ken also has anxiety and depression due to the disruptive effects of FA on her life. She believes there is a societal stigma on people with rare diseases and wishes the world wouldn’t judge her.  

About 15% of people with FA do not have any onset of symptoms until they are 25 or older. Some with FA can live well into their 60’s and beyond. Older patients with FA may develop scoliosis that requires surgical procedures or back braces.

Similar to other neurological conditions such as central pain syndrome, FA patients may develop difficulty swallowing. FA can also lead to cardiomyopathy, a disease of cardiac muscle that causes heart failure or arrhythmia. About a third of people with FA develop diabetes.

Genetic testing can now provide a conclusive FA diagnosis, so if an infant or toddler is showing symptoms of the disease, they should have an evaluation by a neurologist or another medical professional to determine the cause.  FA is not yet one of the genetic conditions covered by newborn screening legislation that I have spoken to my state representatives in Arizona about. But there are federal laws that help us check for inherited conditions like FA.

I look forward to the day that all 7,000+ rare diseases are screened for at the time of birth so that preventative care and coordination can take place, giving children a better chance at a fuller and longer life.  If you have Friedreich’s ataxia and are interested in being a part of the research to help find a cure and treatment, please contact the FA Research Alliance (FARA).

My hope for Ken and all those living with FA is that a cure will be found someday. In the meantime, we can do our part to help lower stigma about rare conditions by advocating for research and meaningful support for the millions of people who live with them.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.

How Chronic Pain Affects Relationships

By Victoria Reed, PNN Columnist

People with chronic pain are often engaged in a battle with their own bodies. Unfortunately, sometimes we also struggle to be believed and supported by family members, friends and doctors. While some may be fortunate to have a supportive spouse or significant other, many pain sufferers lose their life partners along the way, as well as friends.

Pain can take a toll on our relationships. In my own experience, a good friend slowly faded into the background during a particularly difficult time when I was having numerous flares from rheumatoid arthritis and fibromyalgia. The flares cause debilitating fatigue and severe pain. I would often need to cancel plans and never could (and still can’t) predict which day I would wake up feeling awful.

Sometimes when I did not cancel plans, I would end up being miserable the entire time and would regret my decision. Eventually, the invitations and phone calls dwindled, as I was probably considered unreliable.

During that time, I would go for weeks struggling to function and keep going for the sake of my family and young children. But life doesn’t stop when you have a chronic illness. Homework still has to get done, as well as housework, financial matters and shuttling the kids to and from school and to sporting events.

One time, as I was driving my daughter home from gymnastics practice, I was so tired that my car ended up nose to nose with another car in a turning lane! I just barely missed having a head-on collision! Fortunately, the woman I almost hit wasn’t angry, but was actually concerned and asked if I was okay. The experience was frightening because I’d put my child in danger by driving when I was so fatigued.

It was then that I realized how serious my fatigue was and worried about the effect it was having on my relationships and family. Unless you actually experience this kind of fatigue, it can be hard to really understand it.

Additionally, my husband (at the time) was having trouble coping with my illnesses. We had been married for 18 years when we decided to divorce. I obviously wasn’t the same person that I was in the beginning and couldn’t contribute an equal share in the relationship.

The truth of the matter is that chronic pain is hard on everyone. It takes its toll not only on those physically suffering, but on spouses and significant others as well. Some make it known that it’s not working, while others quietly build resentment until they can no longer stay in the relationship. Then, seemingly out of nowhere, it’s “I want a divorce” or “I’m leaving” or “I can’t do this anymore.”

Perhaps they are overwhelmed by increased household chores and responsibilities or feel neglected in some way. Or maybe they fall out of love because you are not the person they married or agreed to be with. Perhaps they are stressed because of the additional financial burden resulting from your lack of income. Perhaps they don’t believe in your illness or think that you are faking your symptoms.

I certainly don’t have all the answers, but you must then pick up the pieces, move on and try to create a new life for yourself. If you have kids, you may have guilt about having an illness or believe that you are the cause of your family’s dismantling. 

Having chronic pain is like having a third person in the relationship. That “person” demands constant attention and spends many hours trying to get between the two of you, taking time away from you and your loved one.

However, if you are lucky enough to have that special someone who is capable and willing to deal with your chronic illness and truly understands and accepts, it might not mean the end of your relationship. Many people do stick with and endure the challenges of having an ill partner. It takes a very special person to be able to do that.

It’s good to have a few good friends who are supportive and understanding, rather than a bunch of people who say they are friends, but never step up to the plate. I’ve learned that family members who can’t be supportive have no place in my life. I believe it’s important to surround myself with positive people. Negative people can be emotionally draining and almost always are takers, rather than givers.

Those of us who have been abandoned must move on for our own emotional and physical well-being. As awful as it might seem at the time, it gives us the opportunity to meet new people who are able to give the love, support and compassion that we deserve.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.