People in Pain Fight What Others Can’t Understand

By Carol Levy, PNN Columnist

“We are so fond of one another, because our ailments are the same.” Jonathan Swift.

That does not apply to those of us with chronic or intractable pain. Our “ailments” are different. Very different. Painful conditions caused by genetics, trauma, medical error or sheer bad luck. Many healthy people don’t know such pain can exist.

In the 1980's, organ transplant rejection was thought to be psychological. Then they learned that it is not in the mind. It is the body doing the rejecting.

Forty years later, many doctors still believe chronic pain is in the psyche. Hopefully, more are accepting that the mind is involved in chronic pain and helps determine how we respond to it, but it’s not where the pain originates.

As difficult as it is for us to accept persistent pain and the resultant disabilities, it makes it even harder when doctors, family, friends and colleagues say, “Oh, c'mon. It's not that bad. You just think it is. So you can think it into being better.”

Mindfulness, relaxation techniques and meditation are helpful -- to the mind. They help some of us deal with the pain, but most still need the benefit of opioids and other pain medications, treatments and physical therapy.

“I don't want my pain and struggle to make me a victim. I want my battle to make me someone else's hero.” Unknown author.

How often do we hear that? First usually comes the praise: “You are a true pain warrior.” Then the gut punch: “Your pain and struggle are such a good example to others who suffer. You should be grateful. That’s why you have the pain, to be an example.”

I'm sorry, but I don't want to be in pain every day so someone else can learn from my fight. It is a nice side benefit, but it is not why I fight the pain.

Chronic pain does make us different from others. We talk about it a lot, online and elsewhere. Cancer, diabetes, heart disease and other well-known illnesses -- people know and understand them. But Ehlers Danlos, CRPS, trigeminal neuralgia, arachnoiditis and other names too long to list are still the stranger in the room.

It is a struggle for us every day. We fight what others can't and don't want to understand.  Because it is a feared ailment once they know it exists.

Our fight is with us at all times, in whatever we do or try to do. It is daunting.

“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.” A.A. Milne

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.

12 Holiday Gifts on Living With Chronic Pain and Illness

By Pat Anson, PNN Editor

Would you like to know how to avoid paying for inflated medical bills? Where and how to find a good CBD pain reliever? What really killed Elvis Presley? And just who is Patient Z?

The answers to these and other questions can be found in our annual holiday gift guide. If you live with chronic pain or illness and want to have a friend or family member get a better understanding of what you're going through -- here are 12 books that would make great gifts over the holidays. Or you can always “gift” one to yourself.

Click on the book cover to see price and ordering information. PNN receives a small amount of the proceeds -- at no additional cost to you -- for orders placed through Amazon.

The Pain Gap by Anushay Hossain

Anushay Hossain nearly died during 30 hours of labor in a U.S. hospital, her pain so severe due to a botched epidural that she shook uncontrollably. An emergency C-section saved her and the baby. That traumatic experience led Hossain to write this book about sexism and racism in healthcare, in which she shares the real life stories of women who have been “dismissed to death” by medical neglect.

The Strange Medical Saga of Elvis Presley by Forest Tennant

Ever since Elvis Presley’s death in 1977 at the age of 42, rumors have persisted about what happened. Did Elvis die of a heart attack or drug overdose? Dr. Forest Tennant sets the record straight with an inside look at Presley’s chronic health problems, including the possibility that he had Ehlers Danlos syndrome, a connective tissue disease that made it easier for Elvis to gyrate and dance — but ultimately may have led to his early death.

All’s Well by Mona Awad

A novel about a frustrated actress whose career is cut short by chronic pain. She reinvents herself as a college theater director, only to find her student cast is openly skeptical about her pain. To get revenge, she finds ways for people who dismiss her pain to experience it for themselves. Written by best-selling author — and chronic pain sufferer — Mona Awad.

Chronically Empowered by Jessica Cassick

This book is a collection of inspirational short stories told by 65 artists, entrepreneurs and advocates who all live with a chronic illness. Each author describes how they struggled to overcome the adversity that comes with a life-changing illness, and learned how to adapt and thrive through passion and advocacy.

The Way Out by Alan Gordon

Psychotherapist Alan Gordon believes pain sufferers can break the cycle of chronic pain through the use of Pain Reprocessing Therapy (PRT), a form of mindfulness and cognitive behavioral therapy. PRT is based on the premise that the brain can generate pain even after an injury has healed, and that people can “unlearn” that pain by forming new brain connections.

Patient Z by Stefan Franzen

A comprehensive and well-researched book by chemistry professor Stefan Franzen, PhD, that looks at pain, addiction and the opioid crisis through the eyes of a patient. “Patient Z” can’t find good pain care because opioid medication has been criminalized and the field of pain management hijacked by regulators, anti-opioid activists and drug companies. There are millions of people like Patient Z who are caught in the middle of a growing pain crisis.

The Essential Guide to CBD by Reader’s Digest

You know CBD has gone mainstream when the Reader’s Digest publishes a book about it. This beginner’s guide to cannabidiol explains how CBD works and various ways to consume it, with anecdotes from people who use CBD to relieve pain and over two dozen medical conditions, from anxiety and migraines to acne and PTSD. The book is easy to understand and backed up with research — with good advice on where to buy reliable CBD products.

Recovery from Lyme Disease by Dr. Daniel Kinderlehrer

A book for both doctors and patients on a tick-borne disease that has infected over one million Americans, about 20% of them becoming chronically ill. Dr. Daniel Kinderlehrer became infected himself, and used his background in holistic and internal medicine to develop an integrative guide to diagnosing and treating Lyme disease with antibiotics, disulfiram, cannabis and other promising new therapies.

Exercised by Daniel Lieberman

Harvard professor Daniel Lieberman looks at the evolutionary history and myths about physical exercise. While important for overall health, Lieberman says exercise in small doses — simply getting up and moving — can be just as effective as running marathons or becoming a gym rat. Even just learning how to sit properly can exercise core muscles, help keep you fit, and significantly reduce back pain.

An Anatomy of Pain by Dr. Abdul-Ghaaliq Lalkhen

Anesthesiologist Abdul-Ghaaliq Lalkhen takes a deep dive into how the human mind and body experience pain and adapt to it. Lalkhen says pain is a complex mix of nerve endings, psychology, social attitudes and a person’s tolerance for discomfort. Each individual and circumstance is different. While acute pain from a broken bone or injury is easily accepted by society, pain that becomes chronic is often misunderstood and stigmatized.

Drug Use for Grown-Ups by Carl Hart

Columbia University psychology professor Carl Hart says all recreational drugs should be legally available for adult consumption. A regulated drug supply with uniform quality standards would be safer, create jobs, generate millions of dollars in tax revenue, and reduce accidental drug overdoses. Hart believes current drugs laws are unjust and their enforcement often racist.

Never Pay the First Bill by Marshall Allen

ProPublica reporter Marshall Allen wrote this book as a “guerilla guide” for patients who want to understand and contest inflated medical bills. One of his unconventional tips is to bypass your health insurance by purchasing drugs and medical devices on your own, without the markup seen in some insurer-negotiated rates. Allen also explains what to do and say in the hospital to avoid paying for procedures that are unnecessary.

These and other books and videos about living with chronic pain and illness can be found in PNN’s Suggested Reading section.

The High Price of Being Your Own Advocate

By Cynthia Toussaint, PNN Columnist

I’ve always encouraged women in pain to be strong advocates for their care. But after decades of pushbacks and harassment from the medical community for doing just that, I’m starting to question whether self-advocating does more harm than good.

The U.S. healthcare system is flat-out busted because it revolves around making money rather than making people well. The “standard of care” model of medicine is tried and true as profit generating, while it cloaks itself in the deceit of what’s in the patient’s best interest.

While individualized “patient-centered care” is often touted, and makes great buzzwords for marketing material, whenever I elect something out of the norm, my healthcare providers harass and bully me to return to their cookie-cutter model. When I don’t comply, my “care” gets ugly, causing me physical and emotional harm.  

I’ve bucked up against this thuggery for 39 years, the first 20 fighting an HMO. That was the trust breaker for me. After escaping that illness-provoking gulag, I felt certain that at last my care choices would be respected. I was wrong.

While a fresh pain management doctor initially helped, he soon pushed hard for interventions that I instinctively knew weren’t right for me. When I repeatedly said no to prescription fentanyl, ketamine infusions, two spinal cord stimulators and an intrathecal pump, this MD often called to bawl me out before slamming down the phone. For a time I put up with his tantrums because he was the first doctor who validated my Complex Regional Pain Syndrome (CRPS) diagnosis. But at last, my health couldn’t take his abuse and I cut this jackal loose.   

Cancer Diagnosis    

It gets worse. Twenty-two years ago, when I was first diagnosed with ductal carcinoma in situ (aka, “Stage Zero” breast cancer), my oncologist told me I had three months to live if I didn’t undergo surgery, chemotherapy and radiation.

Because my CRPS was a ginormous complication and to me the treatment didn’t match the diagnosis, I chose to “wait and watch.” That doctor was irate, even calling my home to press me into “life-preserving” treatment. Perhaps worse, he never celebrated the reality that my “cancer” ultimately came to nothing. Over the years, I’ve watched ductal carcinoma become a controversial diagnosis because of the over-treatment associated with it. Wow, I was almost a statistic.

In 2019, when I was diagnosed (in the other breast) with real cancer, stage 2 triple-negative, my first thought was, “God, please no, please, please, don’t make me wrangle with the western healthcare system again!”

In short order, I learned that cancer treatment is the mother of all standard of care, and in this do-or-die arena, you don’t ask questions. You say, “Thank you, sir. May I have another?” Problem is, that memo, now and forever, means nothing to me.

Naturally, I was threatened with impending death during the six months I carefully researched and considered treatment (my tumor actually shrunk during that time.) Then, after being a “super responder” to chemo, I turned down the standard-of-care follow up surgery. My tumor was gone, confirmed by imaging, and all studies showed that I had a better chance of survival without going under the knife.

I guess it won’t come as a surprise that every oncologist who crossed my path at that time said my choice was foolhardy, even madness, then chased that declaration with another death threat.

Boy oh boy, do I pay for sticking up for me. Since then, with every scan, they find a new “concern,” be it a shadow on an image or a thickening lymph node. One imaging doctor told me straight up that my cancer had returned and they expected me to jump back into their treatment assembly line.

I was this close to being spooked into that unnecessary surgery which, due to my CRPS, would likely have destroyed my life. Thank god a colleague questioned why they hadn’t done full scans to see if the cancer had spread first, stopping me in my tracks. Lo and behold, those scans were negative for any and all cancer. No matter. My doctors insisted on the operation, denying me a second opinion, the reason given, “Whether you have a malignancy or not, you have to do surgery.” I arranged for a second opinion at another hospital that confirmed I was cancer-free. Hallelujah!

During this hellish time, I paid the advocacy price in a new, heartbreaking way. I had a 15-year internist who I trusted with my life. In fact, she guided and supported me through all of my cancer treatment decisions. She alone respected the dangers of CRPS and recommended “de-escalation” from unnecessary treatment whenever possible.

The system didn’t like her interference though, and applied pressure. She dropped me as her patient when I needed her most. That was eight months ago, and I’m still working with a therapist, using guided imagery, hypnosis and EMDR therapy (eye movement desensitization and reprocessing), to unravel the trauma of that betrayal.

No Regrets

Despite it all, I move forward.      

Decades into CRPS and a year and a half out of cancer, I’m surprisingly feeling tip-top. That is, until it’s imaging time when the pummeling takes an exhausting toll. My pain and IBS flare, I hyperventilate, stop sleeping, my body gets tight and I have anxiety attacks. I don’t dread the cancer coming back (make no mistake, that fear is REALLY bad) as much as I dread the doctors new “concern” and the ongoing communiques that keep me in a place of anger, resentment and un-wellness.

Reflecting on my chosen role as a self-advocate, I still think the pros outweigh the cons for women in pain. We need to be in control of our treatment choices, whether they’re bucking the trend or going with the flow. And just as important, we need to be ready to walk away from an uncomfortable care situation.

Despite my self-advocacy nightmares, I have no regrets. I continue to make the best choices for me in this dysfunctional, profit-driven healthcare system. Still, I yearn for their support. I wish they’d care about and root for me. I wish they’d celebrate my good health. Mostly, I wish they’d stop harming me.

As I talk with other women angry about past cancer treatment they were coerced into, many who now deal with chronic pain as a result, I’m emboldened to continue speaking out about our fear-based model of over-treatment. My heart aches for them and for those who will come.

Fear and pressure should never drive our care decisions. The way I see it, the biggest mistake we women in pain can make is to sit on the sidelines of care and not do our job as advocates. If we hand our power over to the healthcare professionals and the systems that lord over them, we’re doomed.

The cost of compliance and victimhood is too damn high.                      

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 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.”

Do You Get Adequate Pain Management?

By Victoria Reed, PNN Columnist

For the last few weeks, I’ve been suffering from persistent sinus and dental pain. Sinus pain is not new to me, as I have long-standing allergies which cause swelling in the nasal passages and chronic congestion that sometimes leads to an infection. The medications that I take for my rheumatoid arthritis increase the risk for all types of infections, as they suppress the immune system.  

After seeing a doctor, a sinus infection was diagnosed. Towards the end of a course of antibiotics, I had marked improvement with the sinus symptoms, but was still having considerable pain when chewing, which radiated to my right ear and jaw.  

Initially, I assumed that the pain was related to the sinus infection, but when that didn’t go away after finishing the antibiotics, I made an appointment to see my dentist. He did the usual poking and prodding around my gums and teeth, trying to find the source of the pain, and discovered two areas that could be the culprits. He did a flushing procedure of the gums to try to alleviate the pain. 

However, after the procedure was completed, I had such severe pain that all I could do was hold my head in my hands, while tears seeped out of my eyes. The pain was as bad as the pain I had felt while giving birth without an epidural! 

After more than a few minutes, my face and jaw continued to throb and the pain had not subsided. The dentist could see that I was in quite a bit of distress. He then asked me what the pain level was before I had come in. I replied that it had been a 5, but “now it’s a 10.”  

He sat down beside me and tried to explain what he believed the problem was. It was hard to concentrate, but I was able to understand what he was saying. He told me that he thought a tooth was cracked and that I needed to see an endodontist, a root canal specialist. He also prescribed another antibiotic.  

The dentist then stood up and patted me on the shoulder with compassion. Clearly, he was sorry for having amplified my pain. I appreciated his compassion, but I was ready to leave. At that point, all I wanted was to move on to whichever provider could relieve the awful pain.  

Then, to my surprise, I was offered opioid pain medication! 

This was something I absolutely did not expect. I had root canals for severe infections in the past, but no prescription opioids had been offered and I was sent home with instructions to take over-the-counter pain relievers. The days of getting opioid medication for severe dental pain were over, I assumed.  

However, after my initial shock, I politely declined the prescription. Why? Because I already receive a mild prescription opioid for my chronic pain conditions. Sure, I could have taken the prescription and not said a word about that, but I knew that I should honor the pain management contract I had signed with my doctor.  

While I believed that a stronger medication would have been helpful for my tooth pain, I did not want to risk being ejected from my pain management program. My contract (and nearly all pain management contracts) explicitly states that I am not allowed to receive any additional opioids from any other provider.  

I turned down the possibility of immediate relief of my dental pain so that I wouldn’t lose my regular prescription for chronic pain. I felt that I had no other choice. In addition, I didn’t want to be “red-flagged” by the pharmacy as a drug seeker, even though I did have a legitimate need for the new prescription.  

The pendulum has swung too far in the effort to control opioid overdoses and many people do not receive appropriate medications to treat their pain. I realize that I am one of the lucky ones to still get a prescription opioid, and I feel for those who aren’t as fortunate as me.  

Every patient should advocate for themselves, but if you are unable or afraid to, try having a family member or friend do it for you. Don’t settle for treatment that is less than optimal. If you are unhappy with your treatment or have intolerable side effects, discuss it with your doctor and ask for a different treatment plan. Doctors generally want to help, but some may feel that their hands are tied when it comes to prescribing opioids.  

Unfortunately, chronic pain patients must continue to jump through hoops in order to be treated ethically, fairly and adequately. Many are denied appropriate treatment due to prescribing limits and doctors’ fear of prosecution for prescribing opioids. I am hopeful that with the upcoming revision of the CDC opioid guideline, things will change for the better.  

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

Overdose Crisis Reaches Grim Milestone

By Roger Chriss, PNN Columnist

The CDC announced this week that the U.S. has seen over 100,000 drug overdose deaths in the 12-month period ending May, 2021. This record-high spike in overdoses is thought to be primarily a result of pandemic lockdowns and the continuing spread of illicit fentanyl.

National Institute on Drug Abuse director Nora Volkow, MD, told NPR that the overdoses “are driven both by fentanyl and also by methamphetamines" and predicted that the surge of fatalities would continue because of the spread of more dangerous street drugs.

Connecticut this week warned that fentanyl was found in marijuana and is the suspected cause of several near-fatal overdoses in the state. “This is the first lab-confirmed case of marijuana with fentanyl in Connecticut and possibly the first confirmed case in the United States,” said state public health Commissioner Manisha Juthani, MD.

When asked if there is anything giving hope about the future of the drug crisis, PROP co-founder Andrew Koldony, MD, told Axios, “Uh... not really.”

Public health is often depressing. It is also rarely simple. We are not going to arrest, restrict or treat our way out of the drug crisis. Although harm reduction and improved access to addiction services will help, they will not be sufficient to reverse current trends.

The U.S. does not even have good data on the street drug supply. RAND researcher Bryce Pardo, PhD, looking at better and more current data in Canada, sees designer street drugs becoming even more dangerous.

“There is a recent and alarming trend toward more harmful supply of drugs sold in illegal markets in Canada. Consumers in Ontario, Alberta, and British Columbia buying powder may be at greater risk for exposure to fentanyl mixed with novel benzodiazepines,” Pardo reported in JAMA Psychiatry. “There is a need to improve monitoring and surveillance of drug consumption in the US as markets continue to trend toward more harmful drug mixtures.”

The U.S. also doesn’t have good data on drug deaths. Even the term “overdose” is problematic now. Deaths that are “opioid involved” in toxicological terms are resulting from inadvertent exposure via tainted cocaine and methamphetamine. And although fentanyl and other opioids are still involved in the majority of deaths, there are now more psychostimulant-involved deaths than there were two decades ago.

The U.S. also lacks good data on the people who died, in particular their drug use history, general health status, and other factors thought to affect drug risks and outcomes. It is easy to speculate that the stress and isolation of the pandemic exacerbated existing risks, but it is important to note that suicides did not rise in 2020 when they might have been expected to.

There is no easy policy fix here. Restricting prescription opioids and legalizing cannabis didn’t work. Ideology will not help. Legalizing drugs is a meaningless slogan since neither “drugs” nor “legalization” is well-defined. The same with old narratives and origin stories about the crisis, which may help explain what happened but contribute little about what to do next.

Safe supply is an appealing but problematic notion. There is no obvious way to test illicit substances in human trials. Illicit labs are unlikely to hold back their products any more than illicit cannabis suppliers are going to obey the law. Street drug test kits might help, if only we knew enough about the drugs and their users.

Treatment is similarly challenging. As Kolodny told Axios, “If we really want to see deaths come down in the short run, someone who's opioid addicted has to be able to access treatment more easily than they can buy a bag of heroin or fentanyl.” Though this is an admirable goal, there is no practical way to do it.

And all of this assumes that street users are opioid-addicted. More and more are not, as the increasing levels of death and harm from psychostimulants shows. Further, an increasing number of deaths are “polydrug” deaths involving two or more substances, which makes addressing risks all the more complicated.

But despair is not the appropriate response. The U.S. was facing rapidly rising rates of tobacco-related illness and death for much of the 20th century. But a combination of public health measures has cut the mortality rate from smoking in half since 1990. These measures include stricter laws and regulations, increased costs, and in an unexpected irony, stigmatization of smoking.

Many of the proposed solutions to the drug crisis have been based more on intuition than data. At this point we simply do not know which public health measures are working or how to improve them. What little data we have is often imprecise and years old, and as the crisis accelerates, the importance of granular and timely data grows. Moreover, the measures to date have often been applied piecemeal for short periods, so their real efficacy remains to be determined.

The tragedy of drug deaths cannot be understated, and the potential for far more drug deaths cannot be underestimated. But if the U.S. can improve its understanding of drugs and its response to risks and harms, we needn’t see so many more deaths moving forward.

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. 

A Modernized Drug Crisis Goes Unchecked

By Roger Chriss, PNN Columnist

The overdose crisis just keeps getting worse. According to the CDC, the U.S. saw over 96,000 overdose deaths in the year ending in March, 2021. The numbers are expected to rise further, with 2021 likely to see over 100,000 drug deaths.

The main driver is illicit fentanyl, which now accounts for over 70,000 drug-involved deaths. Illicit fentanyl is separate from pharmaceutical fentanyl. It is manufactured, distributed, and sold illegally in ever increasing quantities. Vice recently reported that Mexican authorities confiscated 1,225 kilos of fentanyl through September 2021. That’s compared with a total of 1,523 kilos seized over the past two years combined.

There is simply no way to understate the impacts of illicit fentanyl. If current trends persist, deaths from illicit fentanyl will likely exceed alcohol-related deaths within a couple of years, which by recent CDC estimates represents about 95,000 fatalities.

This means that for the first time in history, a synthetic drug will kill more people than “natural” substances do. Throughout the 20th century, tobacco and alcohol were the biggest public health scourges. By comparison, all other drugs combined didn’t kill as many people as alcohol, which only killed a fraction of the people that tobacco did.

That is changing fast. Modernized drugs and illicit markets for them pose unprecedented risks. It is fashionable to talk about the three waves of the overdose crisis or to blame Purdue Pharma and the Sackler family for igniting the opioid epidemic, but the rise of fentanyl and the associated spike in overdose fatalities illustrates a fundamental shift. Designing, manufacturing and distributing drugs has never been easier or more lucrative.

“We live in a world where creative chemists can rapidly design new psychoactive substances when others become hard to get and where the internet can make them almost immediately available around the world,” Maia Szalavitz notes in her recent book “Undoing Drugs.”

Such substances include brorphine and isotonitazene, which have never even been formally tested in humans and have unknown risks and harms. Novel synthetic cannabinoids, opioids and hallucinogens are popping up every month, according to the Center for Forensic Science Research & Education.

Drug fatalities increasingly involve multiple substances, often with incidental exposure via tainted products.

“Most of fentanyl overdoses are in combination with other drugs like heroin, cocaine and methamphetamine," NIDA director Nora Volkow told USA Today. "It is all over the place from the East Coast, West Coast and the center of the United States."

The country is ill-prepared and unequipped for a modernized drug crisis. Risks and harms cannot be properly quantified using existing techniques. Deaths cannot even be properly coded on death certificates because the International Classification of Disease (ICD) codes used by the CDC do not distinguish between prescribed opioids and illicit ones.

“The result is a system that obscures the actual cause of most drug overdose deaths and, instead, just tallies the number of times each drug is mentioned in an overdose situation,” researchers recently reported in the journal Cureus. “We examined the CDC's methodology for coding other controlled substances according to the ICD and found that, besides fentanyl, the ICD does not distinguish between other licit and illicitly manufactured controlled substances. Moreover, we discovered that the CDC codes all methadone-related deaths as resulting from the prescribed form of the drug.”

Further, non-fatal risks and harms are rising. Modernized methamphetamine, called “P2P meth” in reference to the chemicals involved in its manufacture, poses novel long-term neuropsychiatric risks to users.

“The spread of P2P meth is part of a larger narrative—a shift in drug supply from plant-based drugs such as marijuana, cocaine, and heroin to synthetic drugs, which can be made anywhere, quickly, cheaply, and year-round. Underground chemists are continually seeking to develop more potent and addictive varieties of them. The use of mind-altering substances by humans is age-old, but we have entered a new era,” Sam Quinones, author of the book “Dreamland” about the opioid crisis, writes in The Atlantic.

The impacts of this modernized drug crisis are just starting to be felt and there are no easy options for addressing it. As the RAND Corporation noted in a 2019 report on fentanyl and other synthetic opioids, “resolution of this crisis might require approaches or technologies that do not exist today.”

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: Asplenia

By Barby Ingle, PNN Columnist 

If you have been following my series on rare diseases or read any of my books, you already know that I live with multiple rare diseases.

I was fortunate to live to the age of 29 before developing any symptoms. Others are not as lucky. There are over 7,000 rare diseases, and I find that the ones that catch my attention the most are those that affect infants and young people, such as asplenia and Alexander disease. 

One of the people I met while advocating for chronic and rare diseases in Arizona is Allison. Her son Travis passed away at the age of four due to complications of asplenia. In his memory, she started a nonprofit called TEAM 4 Travis.

Allison’s son was a bright, smiling little boy who was born without a functional spleen, an organ that helps filter the blood as part of the immune system. That is what asplenia means; the absence of a spleen. If Travis had been checked during newborn screening, he might still be alive today.  

My stepsister Melanie lost her spleen in an auto accident at the age of six, but was able to live into her early thirties. She passed away due to complications of one of the same rare conditions that I have, Reflex Sympathetic Dystrophy (RSD).  

TRAVIS AND ALLISON

Those who have had a splenectomy (Melanie) or are born with missing or nonfunctional spleen (Travis) are immunocompromised, which puts them at increased risk for severe and overwhelming bacterial infections, particularly from encapsulated bacteria.

Melanie's doctors knew she no longer had a spleen, so she was able to take medications that took on the role of a spleen. Travis was not so fortunate and lost his life due to an infection. It was only discovered after he passed away that he had asplenia.

Every time I go with Alison to talk to our legislators and hear the story of Travis, it gets me emotionally because this is a loss that could be prevented. That is why we advocate for newborn screenings in Arizona and other states.

Alexander Disease

The other spotlight I wanted to shine this month on a rare disease that affects children is Alexander disease. There is not a lot of talk about this condition or how it affects a family on a personal level. I can imagine that it would be quite difficult to lose your child to a neurodegenerative condition.  

Alexander disease is a genetic disorder that primarily affects infants and young children. If symptoms begin before the age of two, chances are the child will pass before their sixth birthday. In cases of adult and juvenile-onset, one can live and manage Alexander disease longer. However, as with RSD, infants, youths and adults have different symptoms, onsets and challenges.  

An infant with Alexander disease will show symptoms like an enlarged brain and/or head size. They may also have seizures, dystonia, and developmental delays that are easy to spot by providers and parents.

In adult-onset Alexander disease, symptoms can be fluid. The brain may show signs of swelling, but it will come and go, causing atrophy over time. Doctors will see lesions in the brain stem and upper spinal cord under contrast enhancements. When earlier stages of the disease are not treated, it can lead to vocal cord paralysis. 

You can learn more Alexander disease and asplenia by visiting the National Institutes of Health. There are also clinical trials developing new treatments for both of these conditions.

If you need support for Alexander disease as a patient or caregiver, you can turn to the United Leukodystrophy Foundation. If you need support for asplenia, please check out Allison’s TEAM 4 Travis Foundation.

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 People With Pain Can Benefit From Pet Ownership

By Victoria Reed, PNN Columnist

Having chronic pain causes significant and daily challenges that can make life miserable, leading to depression and anxiety. As many people discovered during the pandemic, adopting a pet can be therapeutic, positively enhance your life, and may even reduce pain levels.

When my children were young, we adopted a senior dog from the local animal shelter. Bringing home Albert, a lab mix, turned out to be one of the best decisions we ever made for our family.

He instantly bonded with us, in particular with the youngest child. Albert became like an emotional support animal for her, as she suffers from severe anxiety and panic attacks. During times of stress, Albert was always there to calm her down. He just had a way of making her feel better and quickly became a valuable member of our family.  

We enjoyed seven great years with Albert before his health started to take a turn and, unfortunately, we had to say goodbye. Because we knew from the beginning that our time with him would be limited, we always appreciated Albert and tried to make the most of our time with him. He definitely gave us more than we ever could give him! 

Since my kids are mostly grown up now, I decided to adopt another pet and had hoped to re-create the bond that my daughter had previously with Albert.  

Lacey, a tiny poodle mix, has been everything I had hoped for. Not only is she a great little companion, but during bad days, when my rheumatoid arthritis or fibromyalgia are bothersome, she is always nearby, providing comfort, love and affection. She goes everywhere with me and has become an important part of my life.  

According to Dr. Steven Richeimer, a professor of anesthesiology at USC’s Keck School of Medicine, pets help relieve chronic pain by keeping us active and making us feel less stressed. 

“In my practice as a pain management specialist, I've heard numerous accounts of pets improving the lives of patients living with chronic pain and diminishing the depression that often accompanies it,” Richeimer wrote in Spine Universe. “There's no doubt in my mind that having a pet — or interacting with a trained therapy dog or cat — can improve a pain patient's quality of life. Animal companionship is a natural pain reliever, and a substantial body of research supports this theory.” 

One study of fibromyalgia patients found that just 10 to 15 minutes of petting a therapy dog lowered levels of cortisol, a stress hormone. Patients also reported significant improvement in their pain, mood and distress after a therapy dog visit.  

Chronic pain patient Jodi Tuckett found that fostering a dog named Suzy helped her recovery after she was seriously injured in a collision with a dump truck.  

“Having a little mangy mutt to look after shifted my focus away from me, my pain and my therapy team. She helps me when my neck, back and hips are hurting. I take her for a walk. Moving and keeping my joints loosened up makes me feel better. Suzy takes me out – out of the house, out of myself and out of my pain,” Tucket explained in Pain Pathways. 

Getting a pet, if you are financially and physically able to provide for one, can be beneficial to you physically and can improve your emotional state. There are many animals living in shelters and on the street that are in need of good homes!  

Rescued animals have so much love and affection to give, that you might wonder who’s doing the rescuing! I know that Albert and Lacey gave us many years of love, comfort and enjoyment, and I hope that other chronic pain patients will consider adding a pet to their lives. The benefits could surprise you! 

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

Where Are the Chronic Pain Support Groups?

By Carol Levy, PNN Columnist

For many years I was alone with my trigeminal neuralgia. There was no one to talk to about it, no one else who had it, and no one who could understand the terror of it. I longed for someone I could talk with, another person who would nod understandably and share their own stories of how TN was affecting them.

Years later, I was in the car listening to the radio and heard the announcer say “trigeminal neuralgia.”

My heart did a somersault and I yelled out, “Listen to that! They said trigeminal neuralgia!”

I calmed down and listened carefully as the announcer said, “The trigeminal neuralgia support group meets once a month at the City Hospital.”

It’s what I had been praying for.

I went to a few of the meetings. The people were nice and, to my amazement, the group was very large. There were 20 or 30 people, sometimes more, including spouses, family and friends of the person with TN.

There was support and encouragement, interspersed with speakers who spoke about various treatments, explanations for the pain, and even crackpot theories -- which thankfully the members objected to. Little by little, the group grew smaller; more often than not the support lessened and the number of speakers grew.

For quite some time it seemed that the group had simply vanished. Then I started getting email notices again announcing the date and time of the meetings. They had returned, but now there were only 6 or 10 people, always the same ones, and the support seemed to be more of a get-together for these now friends.

Once in a while, someone new came and spoke about their pain. They did get support, before the group turned back to its core members talking with one another. The new person rarely returned.

Then the meetings went from monthly to just 6 times a year, 3 in the spring and 3 in the fall. It was usually two meetings with speakers or information about ways to deal with the pain. The third meeting was only for “sharing.”   

For me, the support felt lacking.

I decided to go to the phone book (in my area we still get one) and look up support groups. I was gladdened to see at least 150 listed. But I was dismayed when I found not one was for chronic pain. The closest any of them came was for specific diseases that have pain as a symptom, such as multiple sclerosis or lupus.

There are many support groups on Facebook, but that’s not always the best place to find support. Some are terrific and the members are truly there for each other, but too many others become an arena for back stabbing, misinformation and drama.

There is something to be said for meeting in person with the people you have gone to for support. But why is it so hard to find a support group for “just” chronic pain? The cries for support are loud and clear, but the willingness to start the groups or go to them doesn't seem to be.

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 Evidence That Rapid Opioid Tapering Is Harmful

By Roger Chriss, PNN Columnist

The overdose crisis has motivated a sea change in prescribing practices. Opioid tapering is seen as a part of this change. But the risks and harms of tapering often outweigh its potential benefits, especially when tapering is rapid.

The risks of rapid tapers are well known. The CDC warns providers to “avoid abrupt tapering or sudden discontinuation of opioids,” with a dose decrease of 10% per month a “reasonable starting point.”

But more rapid tapers are very common. A new study looked at retail pharmacy claims for over 810,000 patients taken off high-dose opioids in 2017 and 2018, finding that 72% were tapered more rapidly than recommended by clinical guidelines. Rapid tapering was significantly more common among Medicare patients than in commercially insured ones. Critically, the study also found that counties with high overdose rates had more rapid opioid discontinuation.

The U.S. military health system has also significantly reduced opioid prescriptions. Among active-duty members, a recent study found a 69% decline in prescriptions filled for opioids at daily doses of 50 morphine milligram equivalents (MME) or more.

The Departments of Defense and Veterans Affairs adopted guidelines in 2017 that urge military doctors to taper or discontinue opioids for patients on high doses. But a recent Washington Post investigation found that the VA’s Opioid Safety Initiative was associated with a 75% increase in suicides among veterans living in rural areas and a 30% increase in suicides for veterans in urban areas.

Further, a recent JAMA investigation found that in a study of over 113,000 patients on stable, high-dose opioid therapy, tapering was “significantly associated with increased risk of overdose and mental health crisis.”

“This study highlights important potential harms that are associated with prescription opioid tapering in people with chronic pain,” Beth Darnall, PhD, director of the Stanford Pain Relief Innovations Lab at Stanford University, told Practical Pain Management. “While work remains to understand these associations in greater detail, these findings reveal that patients with chronic pain need better protections within the healthcare system.”

There is, in other words, a clear pattern of harm here. Rapid tapers are destabilizing individual patients and are associated with increased rates of overdose and suicide. The goal of tapering was to reduce opioid-related risks and harms, but the data to date suggests the opposite is happening.

In general, the overdose crisis is getting worse fast. The latest data from the CDC shows over 96,000 drug overdose deaths in the 12 months ending in February, 2021. Opioid tapering has coincided with the rise in drug overdose deaths, though how and to what extent this happens is an open question that urgently requires attention.

There are, of course, risks to prescription opioids and patients may benefit from consensual tapering as described in a federal guideline for dosage reduction. Some people may also do better with non-opioid approaches to pain management.

But the current tapering efforts seem geared toward satisfying a statistical need to reduce prescriptions at the expense of individual welfare. As more and more public health data shows increasing harms without attendant benefits, it’s time to reconsider tapering practices and slow down deprescribing.

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. 

What Pain Patients Should Know About the GABA Neurotransmitter

By Forest Tennant, PNN Columnist

“GABA” is short for the neurotransmitter, gamma aminobutyric acid. GABA is the natural (endogenous) biochemical substance in the brain, spinal cord, and all nerves that control electrical conduction.

Without proper GABA function, we experience pain. New research also shows that low levels of GABA make it harder to keep negative emotions such as fear, worry, anxiety and depression in check. 

All Intractable Pain Syndrome (IPS) patients have nerve damage somewhere in their brain, spinal cord, or nerves. Consequently, IPS patients will either need extra GABA or a GABA surrogate to force damaged nerve tissue to correctly function and relieve pain. 

GABA Surrogates

Without realizing it, you may already be taking a GABA surrogate. And you may have found that your pain gets worse without one. Here are the most effective prescription surrogates:

• Gabapentin (Neurontin)

• Carisoprodol (Soma)

• Diazepam (Valium)

• Alprazolam (Xanax)

• Lorazepam (Ativan)

There are also herbs and amino acids available without a prescription that can be used as GABA surrogates:

• Valerian root

• Ashwagandha

• Taurine

• Brahmi

• Bacopa

Glutamine: GABA’s Precursor

The term “precursor” refers to nutrients or raw material that help make a neurotransmitter. Glutamine is the precursor of GABA. A dose of 2000 mg or more of glutamine a day when taken on an empty stomach with vitamin B6 (2mg or more), will increase your natural level of GABA and probably reduce your pain levels. 

Pure GABA is available as a tablet, capsule or in sublingual (under-the tongue) form in most health food stores or online. Unfortunately, when swallowed in tablet or capsule form, GABA may be digested just like food or fail to cross the blood-brain barrier, and be rendered ineffective.

But sublingual GABA is well absorbed by the body and should be given a thorough trial by every person with IPS. You can take 100 to 300mg sublingual GABA to treat pain flares, or 100 to 200mg of GABA simultaneously with an opioid medication or GABA surrogate for added pain relief.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

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

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.