Finding Peace While Fighting Cancer

By Cynthia Toussaint, PNN Columnist

It’s the damnedest thing. Despite this month being my 40-year anniversary with high impact pain, and while I battle an aggressive breast cancer recurrence, people tell me that I look healthy and happy.

Stranger still, I feel more grounded and centered than ever. In fact, I’m down-right peaceful. So much so, when I recently saw my osteopath, she said that I no longer needed her treatment because I was “in the flow.”  

After delving deep into this disconnect, I’ve unearthed the workings that have brought me to this sacred place. And now that I’m here, I plan to protect my peace.

To start, I’ve learned to neutralize platitudes and their associated shame. When people blow by the gravity of my cancer recurrence by assuring me that staying positive will save the day, I politely dismiss their cliché as unhealthy and unrealistic.

There’s no one alive who could face a second round of breast cancer without being mad as hell. That being said, I’ve given myself permission to move through the five stages of grieving – denial, anger, bargaining, depression and acceptance – which has allowed me to come to an authentic level of positivity… and peace.  

Also, I’ve taken control of my cancer care. This is a big deal. After listening to my oncologist’s by-the-book treatment plan, I shared that, while well-intended, I thought his recommendations would kill me.

Instead, he and I sought guidance from trusted sources, and agreed on a plan that was tailored to my individual needs, including the complications that Complex Regional Pain Syndrome present. I won’t lie to you, the treatment is at times brutal. But I’m choosing it, and with control comes peace. 

And there was a miracle.

With the synergy of my current treatment (low dose chemo, immunotherapy infusions and a robust dose of self-care), my tumor quickly dissolved from the size of a ping pong ball to one that can’t be found. Wearing a Cheshire cat grin, my oncologist recently shared that in his 45-year career he’s never seen such a response.

So how did my body do that? Yes, the med cocktail certainly played its part, but I’m convinced that finding peace is my secret sauce to healing.

Besides taking control of my medical care, I’ve become religious about upping my terrain-game for the healthiest body and mind. I’ve switched to a vegan diet with lots of fish, committed to an hour-long workout each morning, get in bed early to promote deep sleep, and have radically reduced my stress by identifying and removing toxic people from my life. These are the self-care strategies we hear of time and again, and for good reason. When practiced, they work! 

Letting Go of Trauma

For more peace, I’ve vastly upped my game by adding a “paths-less-taken” approach.

Like most of us with pain, I suffered much childhood trauma, the foundation of my un-wellness. I’m working diligently on trauma release using various methods, one being forgiveness. Through daily visualization and meditation, I’m practicing the art of letting go of trespasses.

Instead of allowing anger and hurt to turn into psychic stagnation, I acknowledge the negative emotion, thank it for lessons learned, and send it on its way. Forgiveness is a choice, and I’ve decided to free myself from poisonous energy so I can move forward with peace.

I often remind myself that when a person is cruel, it’s not about me, but rather a challenge they’re experiencing on their life path. And when I can, though still a work-in-progress, I light a candle and wish them well.

Most surprising, I recently stumbled upon my biggest trauma-releasing, peace-inducing tool, as I intuitively knew this blast-from-the-past would move my wellness ahead by eons.

Several months ago, I surprised myself by bringing my grandmother, who passed long ago, into my visualizations. Soon other long-gone relatives arrived. Of particular interest was my Aunt Grace, who continues to lead my healing rituals. Grace died a couple decades before I was born, but I’ve always felt a bond so close, I’ve dedicated my life work to her. She is my guide and my angel.

I now understand that our connection comes from sharing similar traumas. We were both the “fixers” of impossibly broken families and both got profoundly ill at 21. Tragically, Grace died from leukemia. Mine was a different death when CRPS ravaged my body.

Through arduous work and by facing hard truths, I now see that, like Grace, most of my ancestors suffered profound trauma, and by sharing their genes, I’ve inherited the injury that binds me to disease. Science calls this epigenetics.

By healing the wounds of my ancestors through rituals, I’m healing myself. Additionally, I’m breaking cyclical familial patterns by not passing along the burden of traumatic energy to those I engage with.

These seemingly “woo woo” rituals appeared novel – hell, I thought I’d invented a breakthrough therapy! That was until I described them to an integrative trauma expert who shared that “Ancestral Healing” is a real thing, scientifically proven and all.

Life is precious. So is our life preserving, life enhancing peace. Whether I’m on my way out now or have 30 more years of kick in me, I’m focusing on protecting this essential resource. 

I’m convinced that most of our pain, physical and emotional, springs from inner tumult driven by deep wounds, many of them handed down. Through intentional work and practice, we can quell that upset and find peace. Then the challenge is to hold our peace sacred, to protect it from internal and external “vampires” that aim to trip it up.

My mom turned 90 last month and is suffering from advanced Alzheimer’s, I believe brought on by trauma. That trauma has passed down to me, seeding a lifetime of illness.

I recently spent time with Mom at her new memory center, and later that day delighted in meeting my newest grand-niece named after this beautiful, generous and loving woman.

I hope that by healing the wounds our ancestors couldn’t, I’ll help this li’l darling have a pain-free, peace-filled life, one she can, in turn, hand down.            

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

Did Opioids Take Away Your Pain?

By Richard “Red” Lawhern, PhD

I write to and for pain patients in several medical journals and social media venues.  I’ve been doing this work for over 25 years. A few days ago, on one of those venues, I encountered the question asked in the headline: “Did opioids take away your pain?”

What follows is my answer.  

I come to this question from the perspective of a published healthcare writer and caregiver to a chronic neuropathic face pain patient. I weekly interact with thousands of patients in social media and via email distribution lists. Thus I “see” many types of pain and many lives impacted by pain.

Pain is the symptom that most often brings patients to a doctor's office. About 50 to 100 million U.S. citizens are affected by pain that significantly affects their quality of life and requires medical treatment.  In 2018, nearly one in five U.S. adults received a prescription for opioids. Prescription rates have dropped dramatically since then, potentially leaving millions of patients under-treated.

From deep study, I am convinced that opioid pain relievers are safe and effective for the great majority of people in whom they are medically managed by a trained and licensed clinician (doctor, physician assistant, nurse practitioner, etc.).

A small percentage of pain patients — estimated by some writers at 0.6% and others as high as 3% — are vulnerable to substance abuse and addiction. However, the numbers of medication abusers appear to be relatively constant, and are not affected by increased or decreased prescribing rates. This suggests that genetic factors might be involved in addiction, but medical literature isn’t conclusive on this issue. Other “causes” of addiction clearly contribute, such as social isolation, hopelessness, unemployment, and protracted untreated pain. 

Depression and anxiety almost certainly play significant roles in both addiction and suffering due to chronic pain. I see this demonstrated repeatedly in thousands of person-to-person contacts on social media.  I believe aggressive evaluation and treatment for depression is a necessary element for effective pain treatment.

Opioids are not needed by all pain patients. And some pain patients are either very slow or very fast metabolizers of opioids due to their genetics – causing a wide variation in the minimum effective dose between individuals.  Others may develop tolerance over time, requiring higher doses to obtain the same pain relief.

For patients managed over long periods on high doses, physical dependence (different from addiction), may develop and they may have withdrawal symptoms if they are tapered off treatment too rapidly. I see no consistent evidence for any effect that can be called “opioid induced hyperalgesia,” a theory that opioids can make pain worse.

Opioids create variable side effects — constipation, sleepiness, brain fog, nausea or low sexual libido.  These side effects can be managed in many people. And for patients who don’t find a balance, one opioid can be tapered down while a different opioid is titrated up. 

Unfortunately, many physicians seem to be unaware of the highly individual responses to these medications.  If a patient cannot tolerate one opioid and pain is severe enough to warrant using this class of medications, then other opioids can be tried.

There is no one-size-fits-all effective dose or safe dose in this class of medicines. I have talked with patients who get substantial pain reduction (rarely total pain relief) from minimal daily doses of 20 morphine milligram equivalent (MME). I’ve also talked with patients who benefited from a dose as high as 2,000 MME, while experiencing few side effects.  There is published literature in case reports pertaining to this widespread range of doses.

This background leads to a central observation:  the default procedure in long term treatment of pain is to first try non-opioids (primarily NSAIDS, sometimes anti-seizure meds for neuropathy); then to try relatively weak opioids like tramadol; and finally to try stronger opioids like hydrocodone or fentanyl patches. This procedure has been known for over 30 years as the World Health Organization’s “Pain Ladder.”

For all drug treatments, additional non-drug support therapy is appropriate.  By this, I mean patient and caregiver support groups, counseling, massage, physical therapy, acupuncture, cognitive behavioral therapy or interventional medicine. Given that such measures rarely improve pain more than marginally, they are not “preferable” to opioids. They can augment but not replace analgesic medication. 

For all opioid therapies, I believe the appropriate medical procedure is to taper up gradually from low doses, while observing and managing intended outcomes and unintended side effects, until a dose level is found that helps the patient manage their pain without creating dangerous side effects.  When this approach is used — even in patients who also deal with substance abuse issues — we see long-term improvements in patient quality of life. 

By contrast, it is now widely understood that forced tapering of patients to lower opioid doses or “cold turkey” withdrawal can be a direct cause of medical crises and sometimes patient suicide.  Patient desertion is never ethically or medically justifiable.

Used with appropriate oversight by a licensed physician, opioids are both safe and effective.  Addiction or substance abuse are rare in medically managed patients.  There is also no relationship between rates of prescribing versus hospital admissions or overdose related mortality. The continuing and widely shouted “association” between doctor-prescribed opioids and substance abuse is a false narrative that has enormously damaged patients and clinicians alike.

The original and draft revision of the 2016 CDC opioid guideline is fatally flawed by anti-opioid political agendas and outright fraudulent junk science. In my view, these guidelines must be publicly repudiated and withdrawn without replacement. All state guidelines referenced to the CDC must likewise be revised or withdrawn.

It is time to remove law enforcement from doctors’ offices, and return the practice of pain medicine to those with actual training and hands-on experience working with people in pain. 

Richard “Red” Lawhern, PhD, is a subject matter expert in public policy for regulation of prescription opioids and of clinicians who employ them on behalf of patients. Dr. Lawhern is a regular contributor to Pain News Network.

My Story: Hospitals Are Undertreating Pain

By Michael Swift, Guest Columnist

Right now, as I type this, I can barely finish because I just got home from a surgery in my abdominal area. I won't get into the details, but a lot of cutting was done, and I was discharged after an agonizing hospital stay. I was given Tylenol and Naproxen for post-surgical pain.

I am now reclined in bed at home and suffering from post-op pain because a major hospital in a city of a quarter million people is undertreating pain. This is the new norm for most hospitals here in Texas.

My wife and I lived in beautiful central Oregon all our lives. We ended up vacating the house we rented and could find no place to live in the entire state that was affordable to us. For family reasons, we moved to the Texas Panhandle.

My wife, seeking a new pain specialist in Amarillo, was denied and bawled-out two times by doctors. She was told by one verbatim: “We don't push dope here. If you want drugs, go to the north side of town."

I almost walked back in after she told me what this doctor had said to her, to punch him in the mouth. But it would do no good trying to help her from a jail cell. She was visibly upset, in tears, humiliated and so hurt. She is a 67-year-old senior with spinal stenosis and a bone disease that is destroying her vertebral column. Even with stellar remarks by her former providers as a "model patient with legitimate pain,” she was still an object for these millennial brats to verbally spit upon.

When living back in Oregon, my wife and I had a wonderful provider in Bend and our lives were fully active. We failed however to do our homework before moving to Texas. When we arrived, we realized that the Texas Medical Board and certain medical groups and doctors decided they wanted to solve the huge drug abuse problem.

The real problem here has been massive amounts of illicit fentanyl, comprising about 75% of overdose deaths, along with heroin, ecstasy and many other street drugs pushed in by the Sinaloa drug cartel. Nevertheless, the medical board went after the doctors and patients because it was easier than addressing the real problem.

A Broken Healthcare System

To say the least, I am saddened, upset and feeling a huge weight of condemnation from individuals here in the medical field. What a broken and detached healthcare system.

We are both leaving Texas for a nearby state, already set up with a new provider there, who is willing to take a good look at her without judgement. I am not leaving though, until I file a complaint against both pain management providers for their unethical, cruel treatment and libelous slander -- with the use of profanity to my wife's face -- all confirmed by the nurse in the exam room.

I will also file a complaint with the Texas Medical Board for the experience I had as a surgery patient. It will fall on deaf ears, but I won't stop until I get a response. To those of you out there who are also suffering and abandoned, take any and EVERY measure available to control your pain, which is robbing you of your life. You have no other choice.

There is a terrible and frightening experience awaiting those who are destined to go under the knife in hospitals that have overreacted to the "opioid crisis” by implementing a new policy of completely abstaining from administering any narcotic pain medication to post-surgical patients.

I suppose I could have screamed at the top of my lungs to demand pain relief, but who wants that on their record. Or worse, to be blacklisted. Thank God I have an alternate source of pain relief, but I am still astounded.

I am a veteran of nine prior surgeries, all of them done over 20 years ago. When I was in the hospital after those surgeries, I was asked by a nurse what narcotic I wanted to choose for pain relief. After that, I stayed healthy, avoided more surgeries and interpreted the many stories I heard about "Tylenol for post-op pain" as nothing but false tales and fear-mongering.

To all and any of you who posted such statements, I sincerely apologize. You were telling the truth.

Michael Swift lives with degenerative disc disease, arthritis and severe migraines.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org

The Era of No Diagnosis

By Dr. Forest Tennant, PNN Columnist

Recently I was given a report written by a prestigious professional pain organization proposing that “back pain” should be the only diagnosis assigned to this condition.  They want to do away with any diagnosis like herniated disc, arachnoiditis, sprain, strain or rheumatoid spondylitis.  Their rationale was that pain treatment should be the same for every case of back pain, therefore there is no need to make a causative, underlying diagnosis for each patient. 

To me, their motivation was clear.  It takes training, time, expertise and money to make a correct medical diagnosis, and this group only wanted to treat the symptom of pain.  Or maybe they just want robots to take a pain complaint and exercise a preconceived, no-human touch medical protocol as treatment?

This non-diagnostic proposal goes along with the large number of papers that wish to declare pain a disease rather than a symptom.  Let us be abundantly clear:  Pain, as a symptom, can be part of a disease, syndrome, disorder or condition, but pain itself is not a disease.

Some diseases definitely cause pain. Good common sense medical practice has included, and should continue to include, a search for the basic cause of an individual’s pain. What’s more, the focus should be on treating the cause of pain rather than just treating the symptom of pain. Diagnosis is the process of identifying the cause of illness whether it be a disease, condition or injury.

My recent experience in studying adhesive arachnoiditis (AA) has revealed some pathetic information about the failure of some doctors to make a diagnosis.  In an effort to develop prevention measures and treatment protocols, we surveyed several dozen people who developed AA after an epidural corticosteroid injection or a spinal tap.  In these cases, the individual singularly blamed the development of AA on one of these procedures. 

The amazing statistic, however, is that barely a third of these individuals could give us the diagnosis that prompted a physician to do an epidural injection or spinal tap in the first place.  Spinal taps were usually done in an emergency room, and only about half of these patients could even remember the symptoms that caused the emergency visit.

One-Size-Fits-All Treatment

A great disconnect has developed between primary care physicians, pain clinics and patients.  In most cases today, a person with neck, back or extremity pain will initially consult with their primary care physician. In many cases, the doctor will then refer the patient to the local pain clinic, expecting the clinic to determine a specific causative diagnosis and develop a patient-specific treatment plan. 

That is what usually happens when a primary care doctor refers a patient to an allergist, rheumatologist or cardiologist. The medical specialist makes a diagnosis and develops a patient specific plan that either the specialist or the referring doctor will follow while treating the patient. 

But this rarely happens today when a primary care physician refers a patient to a pain clinic.  Almost never is a specific diagnosis made, but a “one-size-fits-all” pain treatment regimen is initiated.  Or worse, the pain patient is given the diagnosis of “opioid use disorder” and placed on the addiction treatment drug Suboxone, even if they have been successfully maintained for years on opioids with no abuse issues.  The referring physician may never even see the patient again. 

The upshot of this practice is that some pain clinics are treating dozens of bonafide patients without a specific medical diagnosis other than neck, back or leg pain, or “opioid use disorder.”

There are some other unacceptable non-diagnostic scenarios these days.  Severe chronic pain is often caused by a rare obscure disease such as AA or Ehlers-Danlos Syndrome.  Patients will often obtain their unusual disease diagnosis and present it to a physician for care, who declares that he/she doesn’t accept the diagnosis. 

A patient may then dare to ask, “Then what do I have and what is the treatment?”  It’s hard to believe, but some patients are being told, “I don’t accept that diagnosis, but since I don’t have another one, I can’t treat you.”

Another story commonly told these days is the patient who complains about “pain all over” and is prescribed a long list of medications, but doesn’t receive a causative diagnosis.  Some patients have gone to a dozen or more doctors, but not one has rendered a causative diagnosis.

The opioid and COVID epidemics have obscured a lot of positive diagnostic developments that have gone on behind the scenes and which greatly assist in making a causative diagnosis. Improved blood tests for inflammatory and autoimmune markers are now available. Genetic and hormone testing can not only pin down a diagnosis, but also provide a roadmap for treatment.  And contrast magnetic resonance imaging (MRI), which distinguishes spinal fluid from solid tissue, has made the specific diagnosis of spinal canal pathologies most accessible.  

Every chronic pain patient not only deserves, but needs a specific medical diagnosis so that the basic cause of their pain can be treated, as well as relieving the symptom of pain.  Without treating the underlying cause of chronic pain, the patient is often doomed to a pained life of diminishing quality until death. 

Modern medicine now has the knowledge and technology to do better.  Why aren’t we?

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis through the Tennant Foundation’s Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

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

Accepting Our Limits

By Victoria Reed, PNN Columnist

The end of summer is approaching. While it’s been a busy one for me, with a move to a new city and lots of gardening and camping, I realized that there was one thing that I had yet to do. I wanted to go to an amusement park.

Every summer as a child, my parents took me and my siblings to Cedar Point in Ohio, where we would ride the kiddy rides, play games for cheap prizes and eat the worst possible amusement park food! It was a time when there seemed to be less things to worry about, and the days seemed to stretch on forever. Those trips were always the highlight of my summer! 

Then as an older teen and young adult, I would return to Cedar Point with my sisters, friends or boyfriends to ride the newer and bigger roller coasters. I had no problems navigating the park on foot. We would walk for hours and spend a fair amount of time standing in long lines to ride the latest thrill rides. Sure, my feet were a little sore by end of the night, but it was well worth it, considering the fun I had.

Recently, as I was fondly remembering those days of my youth, I made a suggestion to my husband that we go back. We had never gone to an amusement park together and figured it would be a nice ending to an otherwise great summer. He agreed, so I went online to reserve our tickets for a day that we figured would be a slow one. It was a school day, so we presumed that the crowds would be smaller. In addition, the weather forecast called for sunshine and warm temperatures.

Once I secured our tickets, my body reminded me that I am no longer a “spring chicken” and that maybe I should reconsider how I expected to walk all day with sore joints, muscle aches and terrible fatigue. My fibromyalgia and RA weren’t going to make this as easy as it had been in the past.

Over the next few days, I tossed around the idea that I might need some assistance to be able to enjoy our day at Cedar Point. On the park’s website, I had seen that wheelchairs were available for daily rental. At the time, I disregarded that information, preferring to pretend that I wouldn’t need anything such as that. After all, I had run on my high school track team and was one of the best sprinters. Why would I need a wheelchair to enjoy an amusement park?

When I look in the mirror, I still see that 18-year-old athlete who is at the peak of her physical shape...

Not!!

Eventually, I came to my senses and went back online to reserve an electric wheelchair “just in case.” I figured I would just park it, and if I got too tired, it would be there for me to use. It was then that I realized that I must accept my limitations.

Did I want to be seen in a wheelchair? Absolutely not! Having to use a wheelchair does things to your pride and your ego. No one wants to have to use assistive devices, but sometimes we have to and accept the fact that we aren’t as able-bodied as we used to be. It’s not a shameful thing, and we shouldn’t be embarrassed by our needs.

It turned out that renting that wheelchair was a good decision, because it allowed me to enjoy the park a whole lot more than if I had to walk the entire day. My husband’s Fitbit recorded over eight miles of walking that day! There was no way I could have done that amount of walking on what turned out to be a very hot and crowded day. If I had tried, there’s no doubt that it would’ve put me in a bad flare.

Unfortunately, as you get older, your body becomes limited in what it can tolerate. Living with chronic pain and fatigue will increase your limits even more. It’s important to recognize that and make changes accordingly. Accepting our limitations, instead of fighting them, will make our lives easier and more enjoyable.

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

Seniors Missing Out on Billions of Dollars in Benefits

By Judith Graham, Kaiser Health News

Millions of older adults are having trouble making ends meet, especially during these inflationary times. Yet many don’t realize help is available, and some notable programs that offer financial assistance are underused.

A few examples: Nearly 14 million adults age 60 or older qualify for aid from the federal Supplemental Nutrition Assistance Program (also known as food stamps) but haven’t signed up, according to recent estimates. Also, more than 3 million adults 65 or older are eligible but not enrolled in Medicare Savings Programs, which pay for Medicare premiums and cost sharing. And 30% to 45% of seniors may be missing out on help from the Medicare Part D Low-Income Subsidy program, which covers plan premiums and cost sharing and lowers the cost of prescription drugs.

“Tens of billions of dollars of benefits are going unused every year” because seniors don’t know about them, find applications too difficult to complete, or feel conflicted about asking for help, said Josh Hodges, chief customer officer at the National Council on Aging, an advocacy group for older Americans that runs the National Center for Benefits Outreach and Enrollment.

Many programs target seniors with extremely low incomes and minimal assets. But that isn’t always the case: Programs funded by the Older Americans Act, such as home-delivered meals and legal assistance for seniors facing home foreclosures or eviction, don’t require a means test, although people with low incomes are often prioritized. And some local programs, such as property tax breaks for homeowners, are available to anyone 65 or older.

Even a few hundred dollars in assistance monthly can make a world of difference to older adults living on limited incomes that make it difficult to afford basics such as food, housing, transportation, and health care. But people often don’t know how to find out about benefits and whether they qualify. And older adults are often reluctant to seek help, especially if they’ve never done so before.

“You’ve earned these benefits,” Hodges said, and seniors should think of them “like their Medicare, like their Social Security.”

Here’s how to get started and some information about a few programs.

Getting Help: In every community, Area Agencies on Aging, organizations devoted to aiding seniors, perform benefits assessments or can refer you to other organizations that conduct these evaluations. (To get contact information for your local Area Agency on Aging, use the Eldercare Locator, a service of the federal Administration on Aging, or call 800-677-1116 on weekdays during business hours.)

Assessments identify which federal, state, and local programs can assist with various needs — food, housing, transportation, health care, utility costs, and other essential items. Often, staffers at the agency will help seniors fill out application forms and gather necessary documentation.

A common mistake is waiting until a crisis hits and there’s no food in the refrigerator or the power company is about to turn off the electricity.

“It’s a much better idea to be prepared,” said Sandy Markwood, chief executive officer of USAging, a national organization that represents Area Agencies on Aging. “Come in, sit down with somebody, and put all your options on the table.”

Older adults who are comfortable online and want to do their own research can use BenefitsCheckUp, a service operated by the National Council on Aging, at benefitscheckup.org. Those who prefer using the phone can call 800-794-6559.

Food Assistance: Some aging organizations are adapting to heightened demand for help from seniors by focusing attention on core benefits such as food stamps, which have become even more important as food inflation runs around 10%.

The potential to help seniors with these expenses is enormous. In a new series of reports, the AARP Public Policy Institute estimates that 71% of adults age 60 and above who qualify for the Supplemental Nutrition Assistance Program haven’t signed up for benefits.

In some cases, older adults may think benefits are too small to be worth the hassle. But seniors who lived alone received an average of $104 in food stamps per month in 2019. And at least 3 million adults 50 and above with very low incomes would receive more than $200 a month, AARP estimates.

To combat the stigma that some older adults attach to food stamps, AARP has launched a marketing campaign in Atlanta and Houston explaining that “food prices are rising and we’re all trying to stretch our grocery budgets,” said Nicole Heckman, vice president of benefit access programs at the AARP Foundation.

If the effort alters seniors’ perception of the program and increases enrollment, AARP plans to do a major expansion next year, she said.

Health Care Assistance: AARP is also working closely with community organizations in South Carolina, Alabama, and Mississippi that help older adults apply for Medicare Savings Programs and low-income subsidies for Part D prescription drug plans. It plans to expand this program next year to as many as 22 states.

The value of these health care benefits, targeted at low-income seniors, is substantial. At a minimum, Medicare Savings Programs will cover the cost of Medicare’s Part B premiums: $170 a month, or $2,040 annually, for most seniors. For older adults with the lowest incomes, benefits are even broader, with cost sharing for medical services also covered.

“Even if you think you might not qualify, you should apply because there are different rules across states,” said Meredith Freed, a senior policy analyst for KFF’s Program on Medicare Policy.

Low-income subsidies for Part D prescription drug plans, also known as Extra Help, are worth $5,100 annually, according to the Social Security Administration. Currently, some seniors get only partial benefits, but that will change in 2024, when all older adults with incomes below 150% of the federal poverty level ($20,385 for a single person in 2022) will qualify for full Extra Help benefits.

Because these health care programs are complicated, getting help with your application is a good idea. Freed suggested that people start by contacting the State Health Insurance Assistance Program in their state (contact information can be found here). Other potential sources of help are the Medicare hotline (800-633-4227) and your state’s department of aging, which can direct you to community organizations that help with applications. A list of the state departments can be found here.

Other Assistance: Be sure to check out property tax relief programs for seniors in your area as part of a broader “benefits checkup” process.

Older adults with low incomes also can get assistance with high energy bills through the Low Income Home Energy Assistance Program. Your local utility company may also provide emergency relief to seniors who can’t pay their bills. It’s worth making a call to find out, advised Rebecca Lerfelt, the retired assistant director of a Chicago-area Aging and Disability Resource Center. These resource centers help people seeking access to long-term care services and are another potential source of assistance for older adults. You can find one in your area here.

For veterans, “this may be the time to take a look at using your VA benefits,” said Diane Slezak, president of AgeOptions, an Area Agency on Aging in suburban Cook County, Illinois. “I run into a lot of people who are eligible for veterans benefits but not taking advantage of them.”

Advocates for many programs note that agencies serving older adults are facing staff shortages, which are complicating the efforts to provide assistance. Low pay is a commonly cited reason. For example, 41% of Area Agencies on Aging report staff vacancies of up to 15%, while an additional 18% report vacancies up to 25%, according to Markwood. Also, agencies have lost significant numbers of volunteers during the covid-19 pandemic.

At the same time, demand for help has risen, and clients’ needs have become more complex because of the pandemic and growing inflation.

“All of this is being amplified by the financial strains older adults are feeling,” Markwood said.

More healthcare and financial assistance programs can be found in PNN’s Patient Resources section.

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Why ‘Dopesick’ Should Get an Emmy for Fiction

By Dr. Lynn Webster and Hazel Shahgholi

Dopesick, the eight-part Hulu series on the opioid epidemic – sorry, the OxyContin epidemic -- has been nominated for 14 Emmy awards. Based on the best-selling book of the same name by Beth Macy, most of the nominations are well-earned, from the excellent acting of Michael Keaton (nominated for Outstanding Lead Actor) to the breakout performance of Kaitlyn Dever (nominated for Outstanding Supporting Actress) as an addicted patient.

As entertainment, Dopesick is an achievement, but the awards should only be given if the admission is made that the Hulu series is almost entirely fictional. So far, the series’ makers have failed to do so, with Executive Producer Danny Strong claiming that robust research was carried out to make the series as realistic as possible.

“I had done a ton of research, conceived and sold the show before I even knew the book Dopesick existed,” Strong told The Hollywood Reporter. "I read the book, and I loved it. I thought it was a beautiful book, incredibly well done.”

The problems with the Hulu series are many-fold, mostly arising from errors, conflations and under-examinations that are littered throughout Macy’s book, as well as the fact/fiction transition necessary in the baton pass from page to screen.

Strong took many elements of Macy’s dubiously factual text at face value, picking up on the well-established narrative that Purdue Pharma’s marketing of OxyContin was the root cause of the opioid epidemic.

As a result, the series was almost literally bound to fail as an adequate representation of the true origins and spread of opioid use disorder.

OxyContin Misinformation

We know that throughout the opioid epidemic, OxyContin made up, at most, only 4% of the total market for prescription opioids. This data was available at the time of Macy’s book release in 2018 and when the Hulu series came out in 2021. It’s not difficult to find, if one searches beyond the bombast of mainstream news about opioids to focus instead on medical literature and government data.

In the first episode, Strong creates a highly dramatic, but erroneous opening scene. While being questioned by a federal prosecutor, Dr. Samuel Finnix (Michael Keaton), a fictional general practitioner, is asked under oath, “What do you think caused so many deaths in such a short period of time?”

Flashbacks intervene before Finnix states, definitively: “OxyContin.” The prosecutor then hammers home the point by asking, “So just to be clear, you are blaming numerous deaths in your region on just one medication?” And with a heavy-heart, filled with prescriber regret and his own addiction stigmatization, Finnix states, “Yes.”

This total condemnation of Purdue, the Sackler family and OxyContin resides entirely in the realm of fiction. We know from a 2012 Bloomberg BusinessWeek exposé on Florida pill mill operators that it was actually oxycodone and hydrocodone-based generics that were fueling opioid use disorder. It is this type of dangerous, OxyContin-pincered misinformation that has propagated a national misunderstanding about opioids, and kept us from moving from blaming to healing.

Rather than the devoutly religious and close-knit Mallum family, who earn their daily bread through hard work in West Virginia’s mines, the Hulu series has the Sacklers sitting down to meet at opposite ends of a table, as opposed to holding hands in prayer. The Sackler family is separated into those who have “A Shares” and those with “B Shares” in Purdue -- a split that divides the heirs and sees them wrestle over profits. As depicted in the series, the Sacklers are not a family, but a business, through and through.

Fictionalizing the Truth

The time-leaps throughout this eight-part series are anchored on the discoveries of law enforcement as it digs deep into Purdue Pharma. But this organizing principle proves thoroughly dizzying, obfuscating the “human interest” element that makes up much of Macy’s book.

Because the series is also determined to paint physicians and patients in an antagonistic relationship, we end up with just two fictional representations of “doctors” and “patients” -- Keaton’s Dr. Finnix and Dever’s Betsy Mallum, whose characters were explained by Strong in a 2021 interview with NPR, in which he praised the merits of not being “stuck to the truth.”

“If I made these characters composite characters, I get way more of these anecdotes into these arcs with fewer characters and get more truthful stories into the show," Strong said. "By fictionalizing, [emphasis added] I wouldn't be stuck to the truth of one person's life. I could use as many anecdotes as I wanted. I could achieve a more universal truth; a higher truth."

Dr. Finnix is the epitome of a “composite character” into whom most material and several arcs are heavy-handedly stuffed. He is emblematic of a problematic prescriber. We only meet three of his patients in detail — Mallum, his ex-miner patient Jonas, and a young woman named Elizabeth-Anne — all of whom become addicts. Finnix himself becomes addicted, getting high on his patients’ diverted supply. This distillation of Finnix cannot be taken as a “more universal truth,” even in a meager sense, as we shall explore.

The mechanism by which Finnix becomes addicted to OxyContin happens in a flash that straddles two episodes. One moment he is the ever-attentive country physician, happily working 16-hour days, making night calls to elderly patients with dementia to ensure all their daily meds have been duly taken, attending to the injuries of his coal-mining patients, and often delivering their children.

Finnix is a man of simple pleasures; he enjoys fishing with members of the Finch Creek community of which he forms the responsible backbone, until the devil invades the town in the form of OxyContin. Upon receiving a call about an explosion in a mine that has left several workers in critical condition, he speeds back to Finch Creek from a visit to Washington D.C. to see his late-wife’s sister, who has encouraged him to start dating again.

In his haste, Finnix doesn’t buckle-up and is T-boned by another vehicle. He suffers several broken ribs in the accident and is prescribed 20mg of OxyContin, much to his surprise, as he usually starts his patients on 10mg tablets.

Cut to Episode 4, entitled “Pseudo-Addiction.” Without any explanation of why the hitherto cautious prescriber has not had follow-up treatment with an independent physician -- we see Finnix cast in utter damnation, diverting OxyContin prescriptions for his own personal use. Presumably, adding another physician to the story would have taken up too much screen time, and undone the drama of Keaton’s lone composite character.

Dependency and Addiction

Let’s pause for a moment to unpack Strong’s haste. It is again based on a conflation made by Macy, who fails in her book to differentiate between the medical terms “dependency” and “addiction.” This is a false narrative. Addiction and dependence are related, but cannot be equated, and should not be conflated. Many drugs, including antidepressants and anticonvulsants, can cause such physiologic adaptation that abrupt withdrawal can cause serious, even life-threatening events. This is the case with opioids, too.

But being dependent is not the same as being addicted. And by not using the term “dependency” extensively in her book, Macy paints a false picture that hyperbolizes all opioid use, prescription or illicit, as inherently a kind of addiction -- when there are millions of people with chronic pain dependent on opioids, but not addicted.

Interestingly, Strong’s series does use the word “dependency” once, in Episode 4, via a nameless, testifying physician character, and in a scientifically false and unhelpful way. With cuts to Finnix locking the last of his patients’ diverted pills in a glass kitchen cabinet, before smashing said cabinet to smithereens, the unnamed physician states, “Opioids are uniquely challenging as they can change a person’s brain chemistry. But in a desperate effort to end the cycle of dependency, some people try to quit cold turkey, but the results can often be disastrous.”

It is important to note that this moment in the series can be enlarged by turning to statements made by Strong in an interview on MSNBC’s Morning Joe, in which he claimed that “you can be addicted in three days” to OxyContin.

That is blatantly false. Neural adaptation can occur as soon as ingesting the first pill. But this is not necessarily problematic, it is simple science and occurs with many drugs, not just opioids. The claim that you can become addicted to opioids in three days is simply not true, and there is no scientific evidence to support this statement. Physical dependency, which they clearly conflate with addiction, is not even a medical problem at day three, day seven, or day fourteen. It may never even become a problem.

But this question cannot even be properly attended to until the differentiation between addiction and dependency is substantiated in these depictions. Respectfully, how can Strong purport to “redefine our understanding” of something that he himself does not understand? 

Strong’s need to distill information is so extreme that Dr. Finnix is funneled into an OxyContin-self-prescribing-and-diverting-monster between the rolling of one set of credits and the opening of a new episode.

Strong’s MSNBC interview is hyperbolically backdropped by a hysterical graphic claiming over 760,000 overdose deaths — a conflated statistic that doesn’t distinguish what drugs caused the deaths. Was it OxyContin? Oxycodone? Hydrocodone? Heroin? Cocaine? Methamphetamine? Poly drug use?

Whether the deaths were due to illicit misuse, diverted pills or legitimate prescriptions is also ignored. We are only told by the reporter conducting the interview that, “OxyContin is the brand most people know.” Indeed. The opioid epidemic has become a cash-cow for misrepresentation.

MSNBC

It is important to note that pseudo-addiction is also mischaracterized in the Hulu series. It is used as a mechanism to accuse Purdue Pharma of encouraging irresponsible over-prescribing, when in fact it attends to patients in a state of severe “uncontrolled” pain. Uncontrolled pain is as devastating as it sounds, especially when we have means to treat it.

Once again, it is a concept that should be considered scientifically and medically, not simply as a harmful concept “invented” by Purdue for profit gains. Uncontrolled pain was not invented by Purdue at all, and has been studied from as early as 1989, before being expanded into the use of opioids for responsible pain management and becoming common amongst pain specialists for over three decades.

‘Selling Poison’

Dr. Finnix follows a similar path as the composite “addict” character, Betsy Mallum: from OxyContin use to chronic opioid abuse. He never moves to heroin, but he does buy OxyContin illicitly, while being schooled by a local drug dealer on how to get a faster high by crushing and snorting the pills through a straw.

It's not long before Finnix’s collapse is total. He has begun to behave uncharacteristically, beating his Purdue sales rep before manhandling him out of his office for “selling poison.”

The axe finally drops in a grizzly scene when Finnix is high during a surgical procedure. Then, while accompanying his now butchered patient to the ER, he complains to the attending doctor of rib-ache and requests OxyContin unabashedly. The doctor offers him a 10mg tablet, but Finnix ups the request to a 20mg pill in a manner that paints him as perhaps the most suspicious doctor-shopping-doctor imaginable.

The onus of representation for the addict group falls mostly on Betsy Mallum (Dever), who, when quizzed in an interview with Entertainment Weekly over the fact/fiction nature of her character replies: “Yes. She's a fictional character that represents a lot of people.”

Betsy is the first patient that Dr. Finnix turns into an addict. She receives the “First-Bottle” of OxyContin, to borrow Episode 1’s title, and uses the pain medicine to continue to work at the mines despite an excruciating work-related injury.

There are two points of note here: Finnix prescribes OxyContin to her with strict instructions for when to take the pills -- one in the morning and one at night -- which Betsy does. He also provides the appropriate advice of a rest period from her grueling work in the mines. He offers to go down and talk to management himself in order for the young woman be able to take a break to aid her physical healing. Betsy does not take his advice.

This is because of the important part the socioeconomic environment plays in Betsy’s crucial and unexamined predisposition toward addiction and substance abuse disorder. She knows how the mining industry works and that, in her father’s own account, she is the smallest "but strongest” one down there.

Betsy therefore has the obligation of needing both to retain her work: she’s a small-statured female and knows she is at high-risk for disposability in a shrinking industry, but she must also fulfill a need for validation from her domineering and deeply religious father. A father who would cast her out if she were to reveal her true self: her sexuality as a lesbian involved in a behind-closed-doors relationship with fellow mine worker, Grace.

This moves us on to a pivotal point. Even though Betsy is the recipient of the “first bottle,” she dumps her prescription by Episode 3, “The Fifth Vital Sign,” without tapering of any kind and without informing Dr. Finnix. Subsequently, she descends into a world of illicit diverted pills and eventually heroin. It is the latter drug that takes her life, the night before she is to enter a Suboxone treatment program and after a conversation with Grace, when she finds out that her first love can only be a friend moving forward.

Due to her addiction, Betsy never manages to make “enough money underground” to move to Grace’s Eureka Springs, Arkansas; a real place that Grace describes to Betsy as “Oz for country queers.” Devoid of hope after losing her first love, Betsy informs her flop house drug dealer that she is entering a Suboxone treatment center the following day. “So give me one hell of a sendoff,” she states as her final, fatal words.

The Fifth Vital Sign

To move beyond the episode’s sign-posting, the show depicts the medical community’s adoption of pain as the “Fifth Vital Sign” as a ploy to fuel over-prescribing. At the time the phrase was introduced, pain was vastly under-treated, there was a pressing need to bring attention to the unmet needs of chronic pain sufferers across the nation, and to facilitate dialogue between physicians and their patients to assess their pain levels and explore treatments — with opioids being just one — to increase their quality of life.

Introducing pain as a “vital sign” was an entirely reasonable pathway to take by the medical community. Although it is reasonable to argue that pain is not a vital sign in the way that breathing and heart beats are, it is nevertheless vital to assess pain.  But once again, it was not a Purdue “invention” as the show would usher you to believe, it was first discussed by Dr. James Campbell in an address to the American Pain Society in 1995. The term has faced some controversy, but it was well-intentioned.

What Macy failed to do in her mishaps over medical research in her book, which led to Strong’s OxyContin demonization, does not befit an analysis of the overdose death of Betsy Mallum. Per scientific examination, the pivotal 1998 CDC-Kaiser Permanente Adverse Childhood Experiences (ACE) study used ten different measures of adverse childhood experiences, drawing the conclusion that that “for each traumatic event that happened to a child, they were two to four times more likely to grow up to be an addicted adult.”

The one we can outline as specific to Betsy is “parental rejection.” This is what she fears the most. When Betsy attempts to come out to her mother by stating that she “likes girls… always have… and not just as friends,” her words fall on deaf ears, with her mother quite literally pretending she didn’t hear the utterance: “Did you say something dear?”

It’s a statement Betsy’s mother later regrets, realizing its impact, but by then it is far too late. Finnix’s pre-OxyContin-addiction fishing trip during which he tries to irk Betsy’s rigid father into the enlightened mindset that being gay is not a sin but just a state of being, also misfires and leads to a demonizing, make-no-mistake style dinner scene.

Unable to live as her true self through fear of rejection and in the throes of withdrawal, Betsy burns the false-self: the one that is content sitting at home and knitting quilts with her in-denial mother.

When the news of her death is revealed, we see the camera focus on a picture of Betsy as a young child. This is also emblematic of denial; but this time not of the fictional Mallum family alone, but also of the filmmakers and Macy, who push for the narrative of the destruction of innocence via the opioid scourge.

Addiction’s Root Causes

The Mallum parents, through the zealot foisting of religion on a girl who “never believed in any of that stuff anyway,” did their daughter a deathly disservice. And they are more culpable for her death than Purdue Pharma or Dr. Finnix.

Betsy had a predisposition for substance abuse disorder, but Finnix did not. Although in Episode 4 we see him in a hallucinated waltz with his deceased wife, he seems content as a widower — although the dance scene does belie his underlying existential pain.

The filmmakers didn’t even throw in any trite backstory or anecdote of Finnix having an alcoholic father or brother — a detail that would barely be substantiating for predisposition per today’s medical rigor over addiction’s root causes. But it would have at least stimulated the viewer into questioning why this character had morphed so horrifically and so expressly.

The young Betsy, on the other hand, has a story of her own and one that would undeniably predispose her to substance abuse. Despite Strong’s claims, one must stick to individual stories to understand addiction, its roots, and the specific drugs that may come to fuel it.

By choosing to fictionalize via character composites, and by picking a “patient” so heavily predisposed to substance abuse disorder due to ACE and environmental factors, Dopesick doesn’t adequately represent the patient side of the doctor-patient relationship at all. The human element that is strong-armed into Finnix and Betsy is loaded for downfall, because that makes for good viewing.  One arc is devastating — Betsy’s — and Finnix’s is convoluted, although redemptive in the end.

Covering all bases in this fashion is hyper-unrealistic, difficult to digest, and self-serving on the part of the filmmakers in their need to enthrall their audience.

‘We Have Another Pharma Case’

There is another clandestine narrative at work in Dopesick. A prosecutor fights prostate cancer as he tries to bring Purdue to justice. After waking from a surgical procedure to remove the cancer, even while semi-conscious and in extreme post-surgical pain, he is aghast at the insistency of a nurse who tries to “force” OxyContin upon him. Heroically, he refuses and relays the tale back to his boss, who declares he made the “right choice” to fight the pain with the over-the-counter, non-narcotic Motrin.

What makes the parallel between the prosecutor and Finnix so powerful is that both characters moved from bigger towns to small West Virginian areas and both describe this life choice as the “best decision I ever made.”

The difference between the two characters is that good old Dr. Finnix, the responsible and attentive physician, falls prey to addiction almost immediately, while the representative of law enforcement holds strong.

Per the narrative of the “Iron Law of Prohibition” that this show peddles, representatives of the law must be invulnerable. The show pushes this weak theory clearly. After all, who could be more of a “drop out” than a physician, who is the biggest threat? It’s not the Sacklers, if we follow the human element, but prescribers.

This good/bad dichotomy is cemented in the last statement made by the chief prosecutor of his future plans: “We have another pharma case we’re looking into…” Tellingly, the drug company is not named, perhaps because it couldn’t be.

The fight for pharmaceutical anti-opioid justice is a good story and resonates with the public. But as a society, perhaps we should focus on addiction and its role in the human condition. Treating addiction, as opposed to distilling and misleading the public about its causes, might be a better way to slow the continuing rise of drug overdoses in America.

(Update: Dopesick won two Emmys, for outstanding lead actor and outstanding cinematography.)

Lynn R. Webster, MD, is 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 the author of the award-winning book The Painful Truth, and co-producer of the documentary It Hurts Until You Die.

Hazel Shahgholi is a senior editor and journalist based in New York City. Her most recent roles include Deputy Editor of amNY Metro, Editor in Chief of The Bronx Times, and Production Editor for MedPage Today.

My Renewed Fight for Disability

By Mia Maysack, PNN Columnist

There are millions of people who are figuratively standing in line, waiting to be granted benefits under Social Security Disability Insurance or SSDI. It usually begins with a person filing a disability application on their own behalf, declaring that they are unable to work, followed by the certification of medical professionals. They are the first baby steps in what can be a very long process. My application took four years before it was approved.

To get it, I represented myself in a court of law and essentially begged on my knees, pleading with detailed reasoning as to why my personal situation affects and at times strictly prohibits any version of what could be considered my working “ability,” let alone “normalcy.”

Not too long ago, I received a notice that a decision was to be made on whether or not I still live with a post-bacterial meningitis related traumatic brain injury that causes intractable and chronic mega-migraines, along with cluster headaches and nerve damage. I do, in case anybody was wondering.

But after two Social Security assigned medical reviews, it was declared that I am no longer disabled. News to me! The memo must have gotten lost because my body has yet to receive it.

Having worked since the age of 14, up until a few years ago, and only after pushing myself almost to the point of death, the disability checks I’ve been receiving consist of money I contributed to the taxpayer pot. I was grateful for it, knowing that many others have it worse in their own ways, even though the dollar amount is limited to covering a shelter over my forever hurting head.

The gift has been not to have to wrack my brain any further, figuring out where I can live. This has been a blessing, because I am then able to promote the full-time job that is self-care demanded by my ailments.

Constructing a non-mainstream path and not allowing challenges to completely dictate or entirely limit my overall quality of life does not lessen what I endure. Nor does it suggest having been cured or even improved.

It is generally understood that a governing “system” is in place to protect those of us who are not attempting to cheat or scheme to get disability. But let me tell you, our skeletal, muscular, nervous, endocrine, cardiovascular, lymphatic, respiratory, digestive, urinary and reproductive systems are continuously being violated and discriminated against by that very same “system.”  

The mourning of past lives and broken dreams is a permanent condition for me. The trauma of living and reliving what has transpired never ends. My symptoms are chronic and unpredictable, which inconveniences no one more so than it does me.

My body, my rights?  My ass.

Whether I can walk on the date of my upcoming appeal or have to crawl, I’ll fight however I can to make these points heard on behalf of everybody.           

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. Mia is also the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

CRPS Is a Bad Name for a Painful Disease

By Dr. Forest Tennant, PNN Columnist

A few years ago, the “pain powers” of the day decided to change the name of a mysterious painful disease called Reflex Sympathetic Dystrophy (RSD) to Complex Regional Pain Syndrome (CRPS). 

Not long after the name change, I received a telephone call from a reporter who mistakenly believed that “CRPS” meant that chronic pain statistics were now going to be kept by geographical regions.  He wanted to know which regions had the least and worst pain problems.  He sounded rather despondent when I informed him the regions weren’t geographic areas, but referred to parts of the body. 

After a sigh and pause, he asked how many regions there were and where they were located on the body.  I finally had to admit that although I was familiar with legs, arms, buttocks and ears, I hadn’t been able to come to grips with exactly what the body’s regions were or where they were located, as they weren’t mentioned in Gray’s Anatomy.  The reporter apologized for bothering me and said he thought he would focus on prostate issues instead.

Not long after I disappointed the reporter, I attempted to obtain a prior authorization to pay for CRPS medications from a patient’s insurance company.  I had mistakenly assumed that the label CRPS had reached the bowels of the insurance industry, but a grouchy lady on the phone informed me that her insurance company didn’t recognize regional pain and only paid for legitimate painful diseases.  Furthermore, she questioned my ability and sanity, accusing me of creating a fraudulent diagnosis.  At this point, I rightfully decided the CRPS label may have problems!

These episodes underline the point that lots of people with CRPS are being poorly treated due to a name that doesn’t even sound like a legitimate disease or disorder. Their very real illness goes unrecognized and payment for treatment is often denied by their insurance.  At best, the CRPS label trivializes a condition that can be so severe as to force a person into bed, endure great suffering, and die before their time. 

The history of the name CRPS is most telling.  A British surgeon named Alexander Denmark wrote the first known description of a disease like CRPS in about 1812.  He described a soldier injured by a bullet this way:

“I always found him with the forearm bent and in supine position and supported by the firm grasp of the other hand. The pain was of a burning nature, and so violent as to cause a continual perspiration from his face.” 

Another physician who was working with wounded Civil War soldiers, Dr. Silas Weir Mitchell, published his findings in a 1864 monograph entitled “Gunshot Wounds and Other Injuries.” Mitchell described the basic injury as burning pain located in close proximity to the battle wound.  He also described the well-known characteristics of the disorder, including glossy red or mottled skin without hair, atrophic tissue, and severe pain caused by touch or movement. 

In his 1872 book, “Injuries of Nerves and Their Consequences,” Mitchell coined the term “causalgia” which he derived from the ancient Greek words kauaoc (heat) and oayoc (pain) to emphasize the nature of the disorder.

The term causalgia remained in place until about 1946, when Dr. James Evans, a physician at the Lahey Clinic in Burlington, Massachusetts, described 57 patients with injuries similar to those labeled causalgia by Dr. Mitchell.  Evans described his patients as having intense pain and clinical signs that he explained as being due to “sympathetic stimulation.” The patients experienced rubor (redness), pallor, and a mixture of both sweating and atrophy.

This syndrome would appear after fractures, sprains, vascular complications, amputations, arthritis, lacerations, or even minor injuries.  Evans found that sympathetic nerve blocks usually relieved the pain, so he rejected the term causalgia and gave it the name Reflex Sympathetic Dystrophy (RSD).

The name RSD pretty well replaced causalgia until 1994, when the International Association for the Study of Pain (IASP) changed it to Complex Regional Pain Syndrome (CRPS).  This change was led by the renowned pain specialist John Bonica, MD, who wanted to shift the focus away from the terms dystrophy, reflex and sympathetic back to pain. 

This argument for the change had validity, in that the condition doesn’t really have a reflex component and sympathetic blockades do not consistently relieve pain.  Also, dystrophy is medically defined as tissue degeneration, such as that caused by diseases of nutrition or metabolism. The IASP wanted the primary focus to be on pain.

Unintended Consequences

While the name changes from causalgia to RSD to CRPS were intended to bring better pain relief to needy patients, there have been several unintended consequences.  In fact, a reasonable argument can be made that the name change has been counterproductive. 

What should CRPS now be called?  It’s doubtful that a new consensus could be quickly developed, as the syndrome is complex and involves multiple issues. 

Frankly, I personally believe we should junk the term CRPS. It trivializes a most serious disorder, and I have found use of the name CRPS actually deprives some patients of the treatment they need.  I have often simply used the term “vascular neuropathy” to effectively educate pharmacies, families, insurance companies and patients about the condition.  At least this term sounds legitimate and serious!

Fortunately, regardless of its name, the syndrome appears to be diminishing both in incidence and severity.  Workplace injuries and vehicular accidents get immediate attention these days, while early medical and physical interventions usually prevent great severity. 

Also, there is now an understanding of centralized pain and its electrical discharges, which are greatly responsible for the so-called “sympathetic” symptoms of the disorder.  Treatments for centralized pain are clearly benefitting persons with this unfortunate disorder, regardless of whatever name you wish to call it.  I would call for a name change but I don’t know who to call!

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis through the Tennant Foundation’s Arachnoiditis Research and Education Project and the Intractable Pain Syndrome Research and Education Project.

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

A Pained Life: We’re Not ‘Normal’ So Don't Expect Us To Be

By Carol Levy, PNN Columnist

I recently contacted a local social service agency for help. They sent a social worker and wonderful lady, Margaret, to come to my home.

The first thing she did was a “depression inventory,” a questionnaire required by the service. The questions were pro forma, and if I was a “normal person” were probably an appropriate way to see if I was suffering from depression. For someone in chronic pain, not so much.

Margaret asked me, “Are you basically satisfied with your life?”

The choices were “Yes” or “No.” The questionnaire allowed for no other answer.

No, I am not satisfied with my life. I am mostly housebound, due to trigeminal neuralgia pain and the fear of triggering more pain if I go out. My reasons for being dissatisfied with my life are legitimate. It is not a sign of depression, but of my reality.

“Have you dropped many of your activities and interests?” Margaret asked. Yes, if you mean since the pain started 40 years ago. If you mean more recently, then the answer is no.

“Do you often get bored?” Of course, I do. I am home most of the time. My eye pain interferes with reading, writing or even watching a movie if there is a lot of movement on the screen. I spend a lot of time with the TV on, as background noise, and sitting in a chair or bed waiting for the hour hand to move so the day is closer to its end.

That sounds like depression. But for me, it's not. It's merely my life.

“Were my spirits good?” Easy answer. See the above.

My neurosurgeon told me there are no more treatments or surgical possibilities for me. They all have unknown risks and it’s not certain they would help. So, when I was asked, “Do you feel helpless?” and “Do you feel hopeless?'” my answer was yes to both questions. Because my situation is hopeless and helpless. The medical profession has told me so.

Margaret’s next question; “Do you prefer to stay at home rather than go out and do new things?” could have been two questions for me: "Do you prefer to stay at home?' No, I don't. "Would you prefer to be able to go out and do new things?" Yes, I would, but the pain won't let me.. 

“Do you think most people are better off than you?” was the last question. And the hardest for me to answer. In one sense, yes, because most people don't have chronic pain and they're not housebound. But I am in good shape physically, absent the eye and face pain, and my brain and mind work well. I am independent. So no, they are not better off than me. 

It all depends on the slant of the questions and the slant of the answers. 

Most of Margaret’s questions are not intended for people in pain. I don't expect them to make ones specific for the pain community and I'm not sure, given the spectrum of chronic pain and disability, if that is even feasible.  

We need to be seen for what we are. We are not “normal,” so please stop expecting that of us. 

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.

Raising Lazarus: Another Take on the Opioid Crisis

By Pat Anson, PNN Editor

Beth Macy’s bestselling book “Dopesick” – and the Hulu series based on it -- helped shape the popular narrative on the origins of the opioid crisis: that Purdue Pharma and the Sackler family duped physicians into prescribing highly addictive OxyContin to millions of pain patients, setting off a public health and overdose crisis that continues to this day.

Macy’s new book “Raising Lazarus” focuses on many of the same themes, but with an important new addition. She recognizes that opioid hysteria and fear of addiction went too far, depriving many people in pain of the medications they need to lead functional and productive lives.

“In recent years, law enforcement agencies, the CDC, and other medical authorities had overreacted to the first wave of the opioid crisis by clamping down too hard on opioid-prescribing,” Macy wrote. “Some doctors responded to the revised 2016 CDC opioid-prescribing guideline – and their fear of DEA prosecution – by declaring draconian caps and essentially abandoning their patients.

“People who needed opioids were refused access. Others with decades-long chronic conditions like extreme rheumatoid arthritis were abandoned by doctors and were now left bedbound. Some who were denied the opioids they’d been taking for decades attempted suicide or resorted to illegal drugs.”  

Those are welcome words from a noted critic of opioid “overprescribing.” But that passage – which is buried halfway through a 373-page book – doesn’t represent what Raising Lazarus is all about. Macy’s new book primarily deals with Purdue’s corporate greed and the ongoing struggles of working-class people in Appalachia to overcome addiction and a healthcare system that simply doesn’t work for them.

Macy is a bit defensive and resorts to gaslighting when she acknowledges past criticism from pain patients for Dopesick “drawing too much attention to overprescribed opioid pills.” Many of their complaints are valid, she admits, “if sometimes over-the-top and oblivious to the root causes of the crisis.”

Interestingly, Macy never actually quotes one of those “over-the-top” pain patients in Raising Lazarus, but she did interview Stanford pain psychologist Dr. Beth Darnall about the reluctance of doctors to prescribe opioids.

“Doctors are so concerned about being flagged, concerned about their license and their livelihood, they don’t want to take (chronic pain patients) on, and so you end up with patient abandonment, and iatrogenic harms that can create a medically dangerous situation,” Darnall told Macy.    

‘The Cruel World of Purdue Pharma’

Greed, no doubt, is one of the primary causes of the opioid crisis and Macy describes in detail how the Sacklers manipulated the political and legal system, paying their chief counsel the handsome rate of $1,790 an hour to gum things up as best he could to preserve the family fortune and prevent them from going to prison.

But she gives a free pass to others who have profited from the opioid crisis, often at the expense of pain patients, most notably the private plaintiff law firms suing drug makers on behalf of cities, counties and states.

Macy credits the late attorney Paul Hanly as being “the first to crack open the cruel world of Purdue Pharma” without pointing out that his law firm, Simmons Hanly Conroy, boasts that it “effectively invented large-scale, multi-defendant opioid litigation” and stands to make billions of dollars in contingency fees from settlement money.  

Also unmentioned is the $400,000 in campaign donations given by Simmons Hanly Conroy to former Sen. Claire McCaskill (D-MO) in 2018, who conveniently produced a well-publicized report that year critical of drug makers and medical pain societies that the law firm was suing. Overwhelmed with legal fees defending themselves, two of those pain societies filed for bankruptcy, a loss that pain management specialists, researchers and patients could ill afford.

Macy does quote anti-opioid activists like Dr. Andrew Kolodny and Dr. Anna Lembke, but doesn’t mention that they testified as paid expert witnesses for Hanly and other plaintiff law firms, making well into six figures for their testimony, which they often failed to disclose in conflict of interest statements.  

“The opioid-litigation money is a once-in-a-generation opportunity,” Macy writes, with unintended irony.

Macy is hopeful the settlement money – once estimated at $50 billion -- will go towards addiction treatment and better healthcare for communities ravaged by the opioid crisis. Unfortunately, much of it has already been spent on legal fees, media and public relations campaigns, and political donations. That’s not counting shady industries that have grown and prospered due to the opioid crisis; from drug testing and stem cell providers to cannabis promoters and drug cartels.  

Even though fentanyl and other street drugs are responsible for the vast majority of overdoses, Macy still clings to the tired notion that opioid pain medication started it all.

“A quarter century into the crisis, many people with OUD (opioid use disorder) have long since transitioned from painkillers to heroin, methamphetamine, and fentanyl, the ultra-potent synthetic opioid. And we now have a generation of drug users that started with heroin and fentanyl,” she writes. “Death by drugs is now a national problem, but the crisis began as an epidemic of overprescribed painkillers in the distressed communities that were least likely to muster the resources to fight back.”

I look forward to Macy’s next book and hope that she hears more from the distressed community of pain patients. They need a champion to fight for them too, not more gaslighting.

'Bend or Break' Raises Awareness About Invisible Illness

By Madora Pennington, PNN Columnist

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

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

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

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

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

MITCH MARTOW

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

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

‘I Felt Very Alone’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Gaslighting: When Your Doctor Makes You Feel Crazy

By Madora Pennington, PNN Columnist

"Gaslighting" describes the act of deceiving someone to make that person question themselves. It is a toxic interpersonal exchange, an act of psychological abuse that causes the recipient to doubt their own experiences and judgments.

According to sociologists, gaslighters are often insecure, and withhold approval or use hostility to gain the recipient's compliance. The gaslightee is motivated to go along with gaslighting to save the relationship.

This relationship pattern is eerily familiar in the medical exam room. The patient arrives, tells the doctor their symptoms, and expects the doctor to diagnose and treat them. The doctor has the same idea of how their interaction should play out.

“Medical gaslighting” occurs when a healthcare provider dismisses a patient’s symptoms or health concerns. Instead of listening, doing research or referring the patient to a more qualified specialist, the doctor disregards the patient’s issues, blames the patient, or declares the symptoms normal.

The doctor may even diagnose the patient with "conversion disorder" and state in their medical records that the patient’s symptoms are the result of psychological stress or even a personality disorder.

Missed Diagnosis

What happens when the doctor is wrong and a patient is misdiagnosed with conversion disorder?

Kristy Collins knows what that is like. She sought help at multiple facilities for her disabling symptoms, but instead was labeled as having conversion disorder. Kristy had her worst experiences at teaching hospitals.

“It felt like the doctor was in a position as a professor, being looked at by students who expected to have an answer. Not having one, the doctor seemed stumped, even humiliated,” she told me.

That's when the doctor announced that Kristy had a conversion disorder and entered the diagnostic code for it on her medical chart -- essentially a reason to stop treating her. She was soon discharged.

At another office visit, a psychiatrist asked Kristy about her relationship with her father. “I’ve seen a softer side to him because of my medical problems,” Kristy answered. The psychiatrist ran with this, declaring that Kristy yearned for her father’s love.

Kristy and her father were mystified by that because they had always been close. She had no need to invent medical problems to get his attention or to spend time with him. But there was no changing the doctor’s mind.

At one point, Kristy’s father begged her doctors to tell him where they could get her conversion disorder treated. They were willing to pay out-of-pocket for care, if that meant Kristy could get better. The doctors had no place to recommend. They merely insisted she get in an ambulance to go home.

It turned out that Kristy was suffering from undiagnosed and difficult-to-recognize genetic problems. They were the real causes behind her mysterious medical issues. A neurosurgeon at Children’s Hospital of Orange County diagnosed her with Ehlers-Danlos Syndrome, Chiari malformation and hydrocephalus.

Kristy says she is not angry at the medical community, even after all the horrible treatment she'd been through. That’s in part because of the doctor who finally diagnosed her correctly.

“He hugged me and apologized for all of the bad doctors. That allowed me to forgive,” she said.

For Kristy, that appointment was healing.

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

Inflation Squeezes Families Dealing With Chronic Illness

By Heidi de Marco, Kaiser Health News  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

AnNABELLE AND HER MOTHER, DEBORAH LEWIS (khn IMAGE)

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

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

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

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

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

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

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

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

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

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

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

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

Why I Still Take Precautions Against Covid

By Victoria Reed, PNN Columnist

We are three years into the Covid-19 pandemic, and while life has still not returned to normal, it’s understandable for people to be tired of hearing about the virus and less concerned about catching it. Scientists know more about covid and have developed tools to treat and even prevent the most serious outcomes.

But many of us who are suffering from chronic illness or chronic pain are still wearing masks, practicing social distancing and taking other precautions.

As I go out and about in my daily life, I’ve noticed that mask use is somewhat minimal. People don’t seem to be as concerned about the virus and its variants, even as cases are skyrocketing again. I’m one of the few who still wears a mask in crowded indoor places, airplanes and restaurants.

Fortunately, I have not yet been infected with covid. I attribute that to always being cautious in public (sometimes even outside) and when around family members who I know aren’t taking precautions. Being vaccinated and boosted is another layer of protection I believe has helped me.

The choice to be vaccinated is a personal one and should not be looked at as a political issue or be a source of ridicule. The same goes for mask use. Sometimes people look at me funny because I still wear a mask, but I am “allowed” to do that, just as others are equally allowed to stop wearing theirs.

I don’t judge people who choose not to wear a mask, and conversely, I shouldn’t be judged for wearing one.

Part of my caution comes from having a dysfunctional and overactive immune system, which is altered by a medication I take to control symptoms of rheumatoid arthritis (RA). This medication suppresses a certain part of the immune system that is implicated in the development of RA.  Rheumatoid arthritis primarily attacks the joints, but can also attack the heart, lungs and eyes.

Having to take this particular med (commonly called a biologic), makes me more vulnerable to contracting all types of infection, including covid. It also makes it more difficult to recover from infections and can lead to serious or even deadly complications. 

In addition, the threat of possibly ending up with long covid, when symptoms linger for months or longer, is a concern of mine, especially since fatigue is a major part of long covid syndrome. Profound and disabling fatigue is also a feature of RA and fibromyalgia, so anything I can do to prevent another illness that causes fatigue is important to me. Even mild cases of covid can cause long covid, according to researchers.

Covid can also lead to physical complications. Studies have shown that the virus can cause neurological problems, difficulty breathing, joint or muscle pain, blood clots or other vascular issues, chest pain and unpleasant digestive symptoms.

Furthermore, the virus has been associated with increased psychological problems, such as depression and anxiety. The media has reported on the unfortunate suicides of people who had been suffering from long covid and were unable to get any relief besides ending their own lives.

In the long term, it remains to be seen how covid will affect the millions of us who are already suffering from chronic pain and illness. Fortunately, there are treatments that help with the symptoms and recovery for the majority of people who become infected. There are also medications that can save the lives of those who are at high risk of severe illness.

As more time passes, I’m sure other treatments will emerge, and I’m hopeful that as a chronic pain sufferer with multiple chronic illnesses, I will be okay if I do someday end up getting sick with covid.

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