How to Live Longer and Healthier with Chronic Illness

By Barby Ingle, PNN Columnist

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My Story: Make Your Doctors Accountable

By Crystal Moody, Guest Columnist

From a full-time medical education coordinator to full-time chronic pain patient, I am now trying to maneuver my way through the world from the other side of the operating table. And it is a completely different ballgame. Gaslighting, patient-blaming and condescension are daily players in this game.

I live with chronic back and neck problems, some caused by medical errors, and have undergone multiple spinal surgeries and procedures. I was legally labeled as “physically disabled” in 2018 by Social Security, but it took three years in California and I had to hire an attorney to make that happen. Every player in this game gets paid, except the patient.

It was the beginning of 2016 when I realized I was never going to be able to work in medicine in my former capacity again. However, even if my body was broken, my mind was not. I re-enrolled in college, wanting to keep my mind fresh in between surgeries.

In 2018, I completed my BA in Organizational Leadership at Azusa Pacific University (online and from bed). I then completed my Masters in Public Health from Los Angeles Pacific University in 2021. I am now pursuing a doctorate in Social Work.

I hope that my work and life experiences will allow me to help others, in the same ways that I have needed help. I want to help people with chronic, debilitating and life-threatening illnesses.

CRYSTAL MOODY

In the beginning of my illnesses, I did not understand why I could not just let things go. As time passed, I realized it was because I was witnessing doctors, specialists and clinicians who had no clue what they were doing. Even worse, I was beginning to realize that every doctor I consulted with seemed to count on the fact that I would not have any medical knowledge. They tried to placate or downplay my concerns, and send me on my way.

Initially, I thought it was because of my own ignorance as a patient. But in appointment after appointment, the truth became blatantly clear. If I had had no educational, personal, and/or professional experiences in medicine, they could have fooled me in every visit, every time.

My goal now is to train our doctors and specialists to be more patient, kind, empathic and ethical, by teaching patients how to be investigators of their own health information. Patients need to learn how to advocate for their own health during an era of “sloppy medicine.”

One such lesson is to teach patients where and how to hold their doctors and clinicians accountable. Never check hospital or medical practice reviews of your doctor. Those reviews are biased. As an ex-hospital employee, I can tell you who gets those reviews. Patients whose outcomes are successful and more likely to give positive reviews are noted by hospital employees. They send those patients the evaluation forms.

In the hospital where I worked, many evaluation forms were completed by other hospital employees. Some employees were even patients of the doctors they work with. How is that not a conflict of interest?

Always check for independent reviews through online sites such as HealthGrades. They are much better resources for patients with complex medical histories. You need to know who you are going to be working with, and it is immensely helpful to see other patients’ unbiased reviews of doctors. No one is a better professional in being and knowing you than YOU.

It should no longer be a one-way-street, with doctors doing all the talking during appointments. If patients know the right questions to ask, they will be better prepared to challenge the doctor for answers and direction. Patients deserve to get the most out of every visit. Additionally, I encourage you to observe if the doctor has a partner or assistant join them in your visits.

You should never go to an appointment alone, if you do not want to. If someone can’t physically be there, you can also make a FaceTime call to have a second set of “eyes and ears” at your appointments. The clinicians document your visits and sometimes bring reinforcements. You should, as well. Your input is valuable, and you should be documenting as much or more than your doctor.

The sad fact is that you are worth more to a doctor when you are sick than when you are well. They send you back and forth between their colleagues and specialists. It is time to cancel the hamster wheel of medicine and rebuild it through decency and transparency, with truly informed consent by both patients and doctors.

A poor doctor should not have the same status and pay as a good doctor, but they often are. What keeps a doctor honest if they earn the same despite their poor patient outcomes? Ultimately, for doctors to perform better, patients must be willing to hold them accountable when necessary.

Disabled patients should know there is no guilt or shame in disability, and that disability does not equal stupidity. There is opportunity for positivity in every negative situation.

Crystal Moody lives in California.

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.

My Story: 30 Years of Pain

By Rochelle Odell

Sad to say, but I am entering my 30th year battling the monster called Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). After three decades, I just call it by both names: RSD/CRPS

It was bad enough when the disease was triggered when I was 46. I had made a career change from aerospace to nursing, and moved out of California to take a new job not too far above minimum wage as a Critical Care Tech. After being a volunteer EMT, it was my dream to become an RN or trauma nurse.  So, I trekked to Georgia to start reaching for my dream.

My left heel was most unhappy with all the walking. I had a lifetime award for medical due to a work comp knee injury, which caused an abnormal gait and the heel pain.

After six months, plus physical therapy, I had a knee arthroscopy. The surgeon was also supposed to remove a painful heel spur, but didn’t. Instead, he accidentally severed a nerve in my left heel, immediately triggering what was then called RSD.

In less than five years, the monster spread to all four of my extremities. I had every therapy, blocks, multiple implants and other procedures, but all ultimately failed.

Back to California I trekked with unexplained, unimaginable pain. I had no job, no insurance except for work comp, and was alone -- questioning my sanity about the career change.

ROCHELLE ODELL

I was eventually placed on a medication only regimen, and for over 16 years was on high dose opioids, along with high dose Diazepam, high dose Lidocaine, and three other meds. Funny thing was, I did very well with them.

Was my pain gone? With RDS/CRPS? No, but it was controlled to the point where I could function. I drove, took good care of my small home, and remained active despite the severity of my disease.

Fast forward to 2016. Those of us suffering from unrelenting intractable pain remember all too well what began that year. Thank you, CDC. All my meds stopped suddenly, but I had no idea why until 2017. A new life of hell began. I didn’t leave the house and was mostly bedbound, only getting up to let my very worried little dog outside, or for a trip to the bathroom or kitchen. Showers? What was that? Just going to the bathroom completely drained me. Thank heaven for adult wash cloths.

I discovered online shopping, thankfully, so we survived. I had no family where I now lived and felt frightened and frustrated. It was like my world had ended. I no longer trusted any doctor or nurse, because most were condescending and uncaring, which really saddened me. I gave up an excellent career in aerospace to go into a profession to care for others, nursing. What happened to those people?

In 2018, I returned to pain management and was placed initially on low dose Norco.  By then my pain was out of control and I knew this would be a new era when it came to pain management. I also knew I was very lucky to have found a provider who would prescribe any opioid. My dose was slowly titrated up, although it was still only a third of what it used to be. I also became a palliative care patient.

I have learned to make my medications work for me, using less on tolerable days and more on bad days, ever cautious about running out early.  I learned, or rather adapted, to finding new ways to do my yard and housework. The last five years I decorated for Christmas like I never used to and began inviting friends over for holiday meals. I became active in my homeowner’s association and was elected vice president. It’s a large senior community with over 1,000 homes.

Have I paid the price for my new endeavors? You bet, big time, for several days at a time. But I did not give in to the pain.

I had a wonderful holiday thanks to sweet friends, and had two pain friends over on New Year’s Day for black eyed peas. One brought her husband. The other recently lost her husband, so she brought her son.

What’s the point of my 30-year story? To share that life does not have to end due to unrelenting pain. Yes, we have to fight far too many battles and no one should be suffering like we do. I decided not to let my nightmare consume me and refused to let it destroy what life I have left.

I am now 76. At this moment my left foot and leg are throbbing, and my whole spine feels electrified. Pain management ordered a full spine MRI to rule out arachnoiditis and the myriad of other problems already diagnosed. My left hand and arm feel like they’re on fire, but I know that when I finish this column, it’ll be time for my meds and some relief.

I want all my pain friends to stand up to your pain even when you feel you are at your wits end. Resurrect the fighter in you. Call a friend or have one over for tea or hot chocolate with this cold winter. You can do it! Tell your pain where to go, please, for you!

Rochelle Odell lives in California.

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.

Learning How to Cope With Childhood Trauma

By Cynthia Toussaint, PNN Columnist

My world became unreal and terrifying when I was 18. Literally, everything looked, sounded and felt distorted. While I’ve long known this experience is called “derealization,” I only recently discovered it’s a form of dissociative coping that sprung from childhood trauma – trauma that also seeded a lifetime of chronic pain, including my Complex Regional Pain Syndrome.

During my trauma-release work last year, I learned that dissociation protects us from experiencing what is too overwhelming: perceived annihilation, if you will. My childhood years were so traumatizing, I now see that my mind made everything unreal to escape the horror of my world, which included domestic violence, mental illness, addiction and suicide.

There are five different forms of dissociation (depersonalization, derealization, amnesia, identity confusion and identity alteration), and my trauma therapist explained that, unfortunately, derealization is the least common variety, with scant research behind it. Also, it’s near-impossible to manage.

When my reality imploded a lifetime ago, my derealization felt anything but protective. It invaded me so dark and destructively, I feared I’d gone insane and that my next stop was an asylum.

It all started by eating too many pot-filled brownies while I was on an anxiety-ridden outing with my abusive brother and his posse. To get home, I was named designated driver because I’d partaken less than the others. I was terrified because I felt like I was on a bad trip. Also, I’m awful with directions and knew my brother would mercilessly belittle me for my wrong turns.               

Still, I took the wheel. Soon, out of nowhere, or so it seemed, I blew through a stoplight and missed a speeding Mack truck by a hair, my spatial abilities incapacitated. There must have been an angel on my shoulder that day as we all should have died. In a way, I did.

After being relieved of my driving duties, the people around me, the cars outside, even my own body became terrifyingly unreal and distorted, like being in a funhouse hall of mirrors. I also had such severe paranoia that when my brother’s girlfriend took a turnoff I wasn’t familiar with, I was certain she was driving me to hell. And when I say hell, I mean fire, brimstone and the guy with the pitchfork and tail.  

The horror didn’t let up for the next couple of weeks as I felt I was looking through a veil of fog. Perhaps the freakiest part was that everyone acted as though they weren’t on the same drug trip. I felt alone, always holding the tears and screams inside. I tried to play along with everyone else’s normal, reminding myself that if I let out my terror, they’d likely have me committed.

Panic Attack

Soon after, when my family took a long-anticipated trip to New York City, I lost my marbles. It was too much of a load of sensory input that I was unable to process in my vulnerable state. One night in our hotel room, I released my panic with a gut-wrenching scream that didn’t let up for hours. Horrified, my family got me to an ER, and I was diagnosed with an anxiety attack. I only wish.

After that, my derealization became my new normal. Good god, it didn’t let up for an entire year. During college and my first professional dancing job, I learned to cope by using distraction and reminding myself that the bad times were temporary, that some days were better than others.

After developing CRPS and seeing my life and dreams crumble a few years later, I had to give in to the spreading, fiery pain by moving back into my mother’s home. Anxiety, fear and despondency took over and my derealization roared back worse than ever. I was debilitated to the point that I could only lie on a bed and stare at cracks in the wall. It was a single crack that looked real to me.

Out of desperation, I saw a compassionate psychiatrist who mercifully blew open my world. I was stunned as he asked questions that lead me to understand that, not only did he believe me to be sane, he actually knew what plagued me. Stunned, I asked him if my symptoms were familiar.

“Let’s just say that if I had a nickel for every patient that came to me with what you’ve got, I could buy something expensive,” he told me. With that, a ton of weight lifted from my shoulders.

This healer put me on a benzodiazepine, Klonopin, and gave me a book that detailed my dissociative disorder. I was no longer alone and, at last, knew I was sane. Regarding the Klonopin, the good doctor added, “I wouldn’t be surprised if your pain lets up as well.” 

Within a few days, my derealization miraculously eased by about 80% and, as a bonus, I went into my first CRPS remission. The word “hope” re-entered my vocabulary, and I was again among the living.           

44 years after eating that brownie, I still wrangle with derealization. If stressed or triggered, the fog closes in, but it no longer runs me. I’m fortunate the clonazepam (generic for Klonopin) is still effective, as I have a brother who isn’t as lucky. He’s suffered most of his life with derealization, and nothing has ever provided respite.

Trauma brings on so much bad in so many ways, and our minds and bodies go to astounding extremes to persevere. Since my trauma-release work, I’ve arrived at surprising new understandings and feelings. I’ve come to a place of acceptance, even a bit of gratitude, for my derealization. It’s gifted a lifetime of protection by shielding me from what I likely wouldn’t have survived. It was simply trying to do right by me. Still is.              

For real.           

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.”

A Pained Life: The Doctor Complex

By Carol Levy, PNN Columnist

The doctor walked into the exam room. He put out his hand and said, “I'm John Smith.”

For some reason, I did something I had never done before and asked, “Do you prefer John or Dr. Smith?”

“Uh, either is okay,” he said, looking a bit befuddled.  

So, I went with “John.” He didn't look happy with my choice, but he accepted it.

Flash forward to another exam room. Another doctor walks in and extends his hand to introduce himself. “I'm George Midas,” he says.

“Do you prefer George or Dr. Midas?” I ask.

He blew out his chest, like a gorilla in the mist. “I went to medical school and I deserve the title of doctor. You may call me Dr. Midas,” he said.

I returned to the first doctor. I never went back to the second one.

I read in medical blogs about how concerned many doctors are because they feel their elite status in the public eye is diminishing. “Doctor” or “physician” is what they are, so that is what they want to be called. Even the sobriquet “provider” is an affront to them. “Provider” makes them sound like nothing more than a businessperson, and that is an insult.

I remember being in the hospital years ago and my neurologist came into my room. He was wearing a sporty pinstriped summer suit. No white coat.

“I like your suit. You look really nice in that,” I said.

“You mean I don't look professional,” was his reply.

No, I didn't mean that. But apparently the white coat makes the man, and the man is more when he is seen as doctor and wears the uniform. Out of it, he becomes just another person doing business with a patient.

It is an odd thing. We don't call lawyers “Attorney Smith” or architects “Architect Michaels.”

You may recall when the Bidens first came into the White House. There was a hue and cry about First Lady Jill Biden calling herself “Dr. Biden” because, after all, she wasn't a medical doctor. She was “merely” a doctor of education.

Yes, it wasn't medical school, but does that mean that her graduate education was “less than” because it was not a medical school?

I hate to tell those who went through the rigors of medical school that doing so was a choice. No one forced them to become a doctor. And going through what may be the hardest of all graduate studies does not make them better than anyone else.

I will gladly call you “doctor” if that is the only option you give me. But don't confuse the use of your title with me being less elite than you are. Because that is one thing I am not.

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.

The Healthcare System Is Sick, How Could It Ever Heal Us?

By Mia Maysack, PNN Columnist

As a person who has required ample medical attention throughout my life, a constant part of the never-ending struggle for treatment is finding a provider that’s worth-a-damn to administer quality healthcare.

In childhood, I was fortunate to have one practitioner who treated every member of my family. Although most of it was an excruciating trial and error process, I can at least say they tried. When she retired, for continuity’s sake I gravitated toward someone else in the same medical practice.

By then my initial condition (chronic head pain) had not only become more complicated, but I was also battling another diagnosis (fibromyalgia) -- one that the new provider did not seem to take seriously. I chose to dismiss myself from the practice.

At that point, I became more conscious about the sort of doctor I was seeking, so I spent hours researching every clinic in my surrounding area and reviewing doctors’ bios. It was imperative that whoever I chose possess some sort of background or special interest in pain. 

I found a candidate I was so excited about that I left in happy tears after the first appointment. Unfortunately, that did not last long. On the next visit, I was diagnosed with my second round of Covid-19 and they proceeded to blame my chronic fatigue, joint pain and compromised mobility on the coronavirus -- as opposed to the fibromyalgia I’d already been diagnosed with years before the pandemic.

I shrugged it off as a misunderstanding, and assumed they must have meant the exacerbation of my fibromyalgia symptoms was caused by Covid.  

At appointment number three, we discussed preventative screenings due to some issues relating to potential hereditary concerns. After some urging, they explained the process of going in for testing, assured me I’d be contacted by qualified personnel, and guaranteed that I’d receive a direct message from them personally once all this was set in motion.

My only job was to wait, so I did. And I continued to wait. A month later, I’m still waiting.

Of course, I realize I’m not the only patient in the universe. As a retired healthcare worker, I understand the burnout so many providers must be experiencing after the last 3 years.  I recognize the shortages and feel privileged to have any sort of access. That being said, over the last two months at least two members of the pain community have taken their own lives. This is an example of what led them there. 

I vowed this was going to be the final disappointment that I am willing to accept from the healthcare system. I am paying more for medical insurance than I ever have, but receive the least amount of aid.

Given that previous failures are what led me to explore more holistic methods, I do not reside in woo-woo land. Concepts like breath work and herbs felt a bit degrading and insulting at first, but then I decided to set my reluctance aside, remembering how lost just about everything I tried up to then had left me. I reflected on the fact that I almost didn’t survive long enough to even consider something different. 

I’d never suggest that natural treatments will cure whatever horrendous illness a person may be enduring, but I’ll point out that many holistic remedies go back thousands of years. Ideas that were once dismissed, such as gut health being correlated to mental well-being; inflammation being the main culprit in overall sickness; oral hygiene (or lack thereof) directly impacting the heart; and how exercise improves mood and health are now widely accepted as mainstream.

Some of these ideas have gained traction, but utilizing things like plants won’t ever be fully encouraged or supported because it takes money away from Big Pharma – which ironically produces medication that is often derived from natural sources as well.

All of this is an open invitation to explore different ways to care for ourselves. We can remain distraught over our lack of support or we can be empowered by seeking out what we can do, as opposed to what they’ll “allow.”

I don't know about you, but continuing to put the quality of my life in the hands of those who repeatedly demonstrate their lack of concern and who are in the business of profiting off sickness is a death wish. The healthcare system is not only guilty of this, but sick itself. How could it ever heal us?

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. 

The Real Hoax About Prescription Opioids

By Barby Ingle, PNN Columnist

How many have to die? How many have to be denied? How many have to suffer unnecessarily?

Those are some of the questions I’m asking after reading a recent article in The Guardian about the CDC’s revised opioid guideline. The article has a few misstatements about prescription opioids that I have issues with. 

Before I share my take, I want readers to know that I do not take opioid medications myself. I have taken them in the past, but found other treatments that were more effective, so I stopped taking opioids in 2009. I also have an allergy to OxyContin, which I discovered after a knee surgery.

In 2018, I underwent pharmacogenomic testing, which I highly recommend for anyone who has chronic physical conditions. It has given me the best precision care available. I still live with multiple chronic pain and rare diseases, and will need treatment for the rest of my life.

You may be aware that I recently stepped down as president and a board member of the International Pain Foundation (iPain). It was a completely volunteer position. I have been advocating through many nonprofits since 2006 and have always been transparent about any funding that the charity or I received. I also have a degree from George Mason University in Psychology.

Which brings me back to the claims about addiction, opioids and patient advocacy that Dr. Andrew Kolodny, president of Physicians for Responsible Opioid Prescribing (PROP), made in The Guardian article. This quote is from Kolodny about patient suicides:

“This is a really serious issue. But what the opioid advocates, many with industry ties, disclosed or undisclosed, pushed was this false narrative about an epidemic of suicide and so there was a manufactured backlash against the CDC guidelines.

“The notion that there are patients losing access to an effective treatment, and therefore they have no choice but to kill themselves because they’re in so much pain now, that’s a hoax. But the idea that someone in the context of acute withdrawal would kill themselves, that certainly could be real because it’s so excruciating.”

From the perspective of a pain patient and a former nonprofit board member, I want to set the record straight about Kolodny’s alleged “hoax.” Yes, addiction is a serious issue. Under-treatment of chronic pain is also a serious issue. Any mistreatment of people with chronic care challenges is an issue.

The healthcare system in the U.S. is working as it was designed and needs to be thrown out. We are all individuals and should be treated by the providers of our choosing to get the care that we need — not as the healthcare system dictates. Not every provider is great, not every patient is great, and no treatment works for everyone. 

In America, we live in a “free” society. I believe we should be able to choose our own care and moral stance. But I wonder why Kolodny believes his moral stance should supersede what a provider and patient feel is best, whether it’s addiction treatment, pain management or any particular choice of care.

We should have full access to whatever we are willing to do to our own bodies. I have said many times over the years that I do not want to be a guinea pig anymore. I work hard to manage my pain levels, my surroundings, my energy pennies, and the people around me.

‘Advocates With Industry Ties’

Kolodny claims that many “opioid advocates” have industry ties and manufactured a false narrative about patient suicides in a backlash against the CDC guideline.

As a patient advocate who has been working with nonprofits for almost 20 years, I believe that the pharmaceutical industry should be giving money to the pain community to help us with tools and resources that make our lives better.

People think it’s easy for advocacy groups to get funding from Pharma, but that is not true, at least for the small funding that I was involved with. I know firsthand the many checks and balances that are needed before any grant money is provided. It did not matter if it was $100 or $10,000. Nonprofits have to account for it on their tax returns and through audits.

Since 2015, grant money from Pharma for iPain completely stopped, even the small amounts that we were getting. We went from completing over 200 grant applications a year, and getting less than 5 percent of them approved, down to a 0% success rate. There is nothing to report when you receive nothing, which is how it is going now for most patient advocacy organizations and support groups.

Receiving nothing from Pharma did not change our opinions or goals. We found other ways to accomplish them on a shoestring budget. I wish it was easier, but being hard does not stop the movement, because it is a matter of life or death in too many cases. Our work at iPain continued, because it was never about spreading whatever Pharma wanted. It was always about helping patients get individualized care. And all options, including opioids, should be on the table.  

Our work continued on a smaller scale and more creatively than if we had a large budget to get things done. At about the same time that our funding dried up, social media took off and it became easier to reach more people and actually be heard. We were still able to accomplish our goals, at less cost and with less funding.

I do not have the time, energy or space in this column to go into the many financial ties — disclosed and undisclosed — that Kolodny and PROP have with law firms involved in opioid litigation, which funded their efforts to take opioids away from patients. Good God, what is the point of him being so moral in his own eyes, that he does not let other people choose what is best for them?  

Patients losing access to treatment is real. So are patients dying or contemplating suicide. I receive emails and calls from them regularly, even since stepping down from iPain.

The first patient I lost due to being cut off from medication was in 2012. She was one of my best friends at the time. I talked to her often. She was on a medication that was helping. The provider cut her off and put her on a different drug. Neither were opioids. She was stable and doing well with the first medication, but not on the second one. My friend decided that jumping out of a 10-story window to her death would be better than not having the medication that was giving her more quality of life.

Kolodny says someone in acute withdrawal might kill themselves because it is so excruciating. Yes, Dr. Kolodny, withdrawal is hard and you are forcing it on people who are already in pain, who did not need or ask for your opinion. That is the real hoax.

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

A Pain Poem: Only the Family Left to Tell

By Ingrid Hollis

How many pass, sight unseen
Only the family left to tell?
Yes, we know all too well
It was the pain.

Untreated, unheeded, so it goes
How engulfed in a fiery foe, left untended
It grew from head to toe.

Only the family left to tell,
How this kind of pain, left untreated,
They quickly go.

We cannot afford to go backwards in time,
Too many lost to pain unheeded
To "it’s all in your head” and “no one dies."
For die they do, a horrible fate.

When pain can be treated,
Make no mistake,
Pain knows no limits when untreated it goes.
Intractable suffering, it's horrible blows, becomes 24/7, and it never goes

How long can a heart beat, and a soul keep alive
When a body is stressed beyond limit?
And remember…
No one wants to die

Pain can be treated, make no mistake
Please discard this meme, this heartless theme
"Pain never killed anyone."
We've done it before.

We can't go backwards
We're better than that, we can do more.
Who decides our fate, it hangs in the balance
If intractable pain comes knocking on your door?

Will you be told to go away,
”Pain never killed anyone.”
Now please go away?

Ingrid Hollis is a person in pain and patient advocate. Ingrid recently retired from a leadership role in the Tennant Foundation’s Intractable Pain Syndrome Study and Education Project to care for her family.

Why I Am Stepping Back from Patient Advocacy

By Barby Ingle, PNN Columnist

Each year at Thanksgiving, our family has a tradition of choosing a community project to support. Every year we do something different: caroling, feeding the homeless, or spending time at the local nursing home. But 2006 was different. The year before, I was diagnosed with Reflex Sympathetic Dystrophy (RSD), a chronic nerve disease that my late stepsister also developed.

We had much trouble getting help and care, so at our Thanksgiving dinner in 2006, we decided to start a 501c3 nonprofit to support the RSD community. Although we had joined other support groups and worked with other nonprofits, it was not what we expected. We wanted to be something different. We wanted to be inclusive of patients, caregivers, providers, legislators and providers treating RSD specifically.

But after the first year, we saw that the same challenges we were working to overcome with prevention, diagnostics, treatment and long-term care were happening to many patients dealing with other chronic pain conditions.

BARBY INGLE

Since helping to start the Power of Pain Foundation – also known as the International Pain Foundation (iPain) -- I learned a lot. I went to classes to learn more about RSD, as well as over 150 other chronic and rare disease conditions.

I would say I became an RSD expert, and over the years taught many healthcare professionals, patients, caregivers and industry leaders about treatments, long-term outcomes, and how to navigate the system from the patient point of view.

I have learned that not every patient wants help, not every patient needs help, and not every patient wants the help that you can give. Having a degree in social psychology was helpful. I understood why there are haters, naysayers and pessimists in the pain community. They are in all of society, why would they not be in our community? 

I remember when I was coaching Deb, our marketing director, she would tell me: “Everyone needs a break sometimes. Take your vacations, take your days off, and leave the job behind.”

Well, when you have a chronic illness, you can’t just leave it behind. I have tried. However, you can take time for yourself. It is not your job to help everyone, even if you want to. It is even more necessary to take care of yourself first.

Therefore, I am following Deb’s advice and stepping back. Mostly it’s because I grew tired of the negativity and hate that comes from being in the leadership position that I was in. Whenever we did an iPain project or chose a “Hero of Hope” recipient, I was thanked and would tell people that I only had one vote. But some did not understand that I literally had just one vote.

Today, I have no vote. As of January 1, 2023, I am no longer President of the iPain Foundation. I still love iPain, and I am still going to volunteer for projects and events. But I am going to take the next two years to do other projects and things for me as a patient, wife, sister and human.

The amount of hate I received over the years for doing something that I have passion for became just too much. I was often told, “You only get to do this because of your position” and “If I was in charge, I’d do it differently.”

To those who said that, watch what I do next. You can do many things, whether you have a position of leadership or not. You can take classes (there are many great ones online) and learn how to do the things you think are important. I have done that and will continue to do it. I will show the pain community that you can do big things without a leadership position. Yes, you can be a leader in action, without the title.  

I wish the 2023-24 leadership of iPain all the best, and hope they succeed everywhere with all they take on, create and produce for the pain community. I am glad to have the stress of the job off my shoulders. Am I done? Yes, I am out!

We will see if I join another board of directors in the future, but for now I will do what I have always done as a pain patient: go into the world to make a difference. I am excited to get back to writing columns for Pain News Network and iPain Living Magazine. I am working on a few more books to publish, some additional presenting, and working on legislation in the coming years.

I have a few of my bucket list items to check off, and I will go on more life adventures with my husband, Ken. Most of all, I will be excited to say more and do more of what I want to do, and not out of obligation for a position I was voted into.  

To the pain community: Be good to each other. Remember you get the help you can be given, not always the help you need. The anger, frustration and negative feelings you face are yours. They are normal feelings for a person in pain, but please also remember the person you reach out to for help may not be able to provide the help you want.

Keep going forward. The help you need is available, how you get there is optional. Taking out those negative feelings on others, especially the ones closest to you, is the ultimate way to drive others away. It is your choice. I choose to get out of the negativity and to work on making a difference. To be a little bit more concise, “You be the best you, I will be the best me, too.”

It can be a win-win situation for us both, which is always good. 

You can find me on my personal social media, you will see more articles from me at PNN and other outlets, and you can always check out my personal website to find out what I am up to next. There will be much more to come, and I promise to continue to make a difference and help in ways that I can. I hope I motivate you to do the same for yourself.  

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

My Story: How I Was Medically Gaslighted

By Preslee Marshall, Guest Columnist

I remember the first time I experienced what felt like an electric shock sensation. It was a sudden zap out of nowhere, and I wasn’t sure what to make of it. 

It started happening about once a month, then turned into once every two weeks. Before I knew it, this painful experience was happening several times a day with no apparent explanation. 

Recognizing that the pain I was feeling wasn’t normal, I went to a walk-in clinic to get answers. 

I went over my symptoms with a doctor and was told, “It’s probably just fibromyalgia. Do Tai Chi, it should help with that.”  

Confused, I asked the doctor to spell out what fibromyalgia was, as I hadn’t heard of it before. The way it was brushed off with “do Tai Chi,” I figured it couldn’t be too serious. 

Finding information online about fibromyalgia didn’t take much time or effort. This chronic disorder causes pain and tenderness throughout the body, fatigue and trouble sleeping. One thing that stood out to me was how some people with fibromyalgia wind up on disability.  

On the one hand, I could see the seriousness of fibromyalgia and how it can change people's lives. But on the other hand, I’m told to “do Tai Chi” with no official diagnosis or test.

What if the doctor was wrong? 

PRESLEE MARSHALL

I decided to contact another medical professional about my symptoms and to get testing done to rule out other possible conditions. I called my family doctor (sweet lady, but her office is too far from me) and told her what was happening. She brought up a few ideas on what she thinks could be the problem, such as multiple sclerosis or fibromyalgia, and sent in a referral for me to see a neurologist, which was a 6-month wait.  

As my pain worsened, I knew I couldn’t wait six months, so I called the walk-in clinic again and said that if it was fibromyalgia, then I should be sent for testing to determine that. I begged for an MRI test to rule out other illnesses, which I thought would help tremendously. I knew I needed to get referred as soon as possible if I wanted answers. 

The clinic assured me that the neurologist would send me for those tests anyway, and that there was no point in doing it now. In my heart, I knew that it wouldn’t be that easy. It took some convincing, but the clinic finally agreed to send the referral for an MRI.  

‘Get Your Nails Done’ 

After a long wait, it was finally time to see the neurologist, who I thought would solve my problems. I was wrong.  

The first question I was asked was if I had anxiety. After answering yes, I could tell that he was sold on that being the problem.  I’ve struggled with social anxiety for as long as I remember. I knew that this was not the case and said that to him.  

“It’s all in your head,” he said at the end of the appointment. “If you get your nails done, you’ll feel better.”  

I was shocked and devastated. I walked into the lobby, went straight to the bathroom, and cried. I knew the pain was real, but felt hopeless, wiping away my tears to head home.  

That same month, just to prove to myself that I didn’t imagine my symptoms, I got a manicure, pedicure, massage and facial. And I still felt awful! I needed to prove to the doctor that he was wrong. I had my upcoming MRI to look forward to. 

The day came and I got the MRI. The imaging test ruled out multiple sclerosis as a possibility, as well as other conditions. I brought those results back to my family doctor, who referred me to a rheumatologist.  

After seeing the MRI results, asking me a few questions, and giving me a pressure point test, the rheumatologist diagnosed me with fibromyalgia. At that point, it had been over a year and a half since I started noticing the symptoms. I felt grateful to finally have a diagnosis. 

Word of the Year 

After such a long ordeal and less-than-ideal treatment by medical professionals, I’m on a mission to raise awareness about medical gaslighting. 

Merriam-Webster, the oldest dictionary publisher in the United States, recently picked "gaslighting" as its word of the year. There are different forms of gaslighting, which Merriam-Webster defines this way: 

“Psychological manipulation of a person… that causes the victim to question the validity of their own thoughts, perception of reality, or memories and typically leads to confusion, loss of confidence and self-esteem, uncertainty of one's emotional or mental stability, and a dependency on the perpetrator.” 

Medical gaslighting is when a healthcare provider makes a patient feel as though their perception of their own symptoms is false. A common phrase being, “It’s all in your head.” 

In my case, it was “do Tai Chi” and “get your nails done.”  

After suffering for well over a year and having medical professionals dismiss my symptoms, I realized that it was up to me to get myself properly diagnosed. 

I’d like to remind others who are struggling not to give up. It can feel like an impossible never-ending situation, but there are people in the medical field who will listen. 

Preslee Marshall, 25, is from Winnipeg, Manitoba. When she’s not busy managing her business, Preslee is traveling the world and unlocking new opportunities for her future. 

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.

First, Do No Harm

By Mia Maysack, PNN Columnist

When living in immense amounts of pain, it can be common to regularly dismiss minor inconveniences that would greatly perturb others, if not hinder them immensely.

Speaking from personal experience, I’ve permitted medical situations to worsen due to my tolerance for ailments, as opposed to promptly treating them. What’s one more thing, right?  

But when it begins to get unmanageable and my go-to treatments aren’t working, I’m often at a loss to calm a pain flare or break a pain cycle. Sometimes I am left with no other choice than my absolute least favorite thing to do — which is go to the ER. 

Recently I was severely dehydrated, the main reason I ever visit an emergency department. Because without retaining adequate water, there can be little improvement in any of my other symptoms. I essentially have given up on the pursuit of pain relief.

It’s typical that when I convey my reasons for being at the ER -- such as days or weeks of an unbreakable migraine or a never-ending cluster headache attack -- there’s judgment about my sincerity regarding conditions that don’t present themselves as a broken bone or bleeding cut.

I recall a time before I retired from nursing, when a patient came in with severe head pain. Knowing what that is like, I ensured dimmed lighting, used a soft voice, closed the blinds, and just moved in a way that I’d appreciate if I was the one lying in the bed. Which is far more often than I’d like.   

A colleague stormed in, turned on the lights and basically shouted at the patient. He later conveyed a disbelief for the patient’s claims -- even though the oath we took includes trusting discomfort as being just as the patient describes it.

The fact of the matter is that no one is able to fully comprehend another person’s pain. And it’s not up for any of us to have a final say on what we don’t personally experience.   

For years, providers have been up in arms regarding the misuse of opioid medication, and as a result are trying to over-correct a mistake that was never the patient’s fault. It’s now impossible for many of us to receive adequate pain relief.   

This has led to a distrust in the healthcare system and is also playing a large role in the number of lost lives we’re seeing.  One of the leading causes of death is suicide. And one of the leading causes of disability is depression. There’s definitely no shortage of reasons to feel down. What’s occurring in our world is cause for chronic sadness. 

As I sat there in the ER with my shades on, while picking up on their shade, I had to use all my might to explain why I was there – telling them my history and answering their questions. There are no words to adequately explain what it’s like to go through inquisitions like that so many times. To have hundreds of appointments, spend countless hours on the phone or in waiting rooms, and fighting for a proper diagnosis. Not to mention all the trial and error treatments, and the constant “permission slip” signing of authorizations just to be seen.  

Having been through it for as long as I have, it has caused its own form of trauma, something I believe is underappreciated. There are moments when I’m not even able to bring myself to enter a medical clinic due to the impact of things like being stereotyped, not believed or even helped. 

This could obviously lead anyone to seek out some sort of way to assist or soothe on their own. That includes, but isn’t limited to, checking out of their own physical existence. I’ve felt pushed to contemplate that a number of times, which I’m not ashamed to admit. Because this needs to be talked about more.   

The healthcare system often fails to such an extent that people are left to feel as though they have no other choice than to find an exit. If only things were set up to truly be concerned about our well-being. Then suicide prevention would look a lot like harm reduction, in the form of providing basic needs like affordable housing, food security and access to mental health resources.  

The medical-industrial complex can lead a person to believe their life does not matter. I live on in spite of it and to honor those who are gone.

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 the recipient of the International Pain Foundation’s “Hero of Hope” award for 2022.

Pain Sufferers Are Unfairly Stigmatized

By Marimée Godbout-Parent, University of Quebec

Imagine living with pain every day for months, or even years — pain that is so intrusive, it disrupts every day of your life. Unfortunately, this is the daily reality of millions of people living with chronic pain. And all too often, they find their condition being stigmatized or even denied outright.

As a doctoral student in the epidemiology of chronic pain, I have the opportunity to work with patient partners. Given the high prevalence and multiple impacts of this disease, it is high time we started working to change attitudes and confront the prejudices that surround it. 

Before discussing chronic pain, let’s start at the beginning. Is pain always a negative thing? Of course not. Pain is essential to our proper functioning. It acts as an alarm system to warn us of danger.

For example, if we were to accidentally put our hand on a hot stove top, a pain message would be sent to our brain. Before we even had time to think about it, we would remove our hand from the hot surface, avoiding an intense burn in the process. This pain provides us with the reflexes we need in order to avoid the worst situations.

Pain can also last a little longer. This is the case, for example, after an injury, an operation or an infection. This pain will often resolve itself after a normal healing cycle or disappear with the help of treatment. This is called acute pain. Short-term pain like this is perceived more as a symptom.

Chronic Pain Is a Disease

When pain persists beyond the normal healing time, it is no longer considered simply a symptom, but a disease in its own right. This is called chronic pain. Chronic pain is defined as pain that persists for a minimum of three months. Yet, for the vast majority of people living with this disease, the pain persists for several years.

In these people, the pain message is somehow missing. It is no longer present to warn us of dangers, but becomes a burden on its own. Chronic pain can occur as a result of cancer, an accident, or after surgery. Unfortunately, sometimes we are unable to find the cause. This makes it difficult to treat.

Although this disease is not widely recognized, it is estimated to affect about 20 per cent of the Canadian population. Considering that our population in 2022 is estimated to be close to 39 million, this would mean that approximately 7.5 million people are living with chronic pain. For the purpose of comparison, 7.5 million Canadians is equivalent to the entire population of Québec. It’s an impressive and worrisome number.

In addition to affecting a large portion of the population, chronic pain causes more than just physical pain. The disease affects the daily functioning, psychological well-being, quality of life, social life and work of the people afflicted by it.

Imagine having so much pain that it reduces your ability to work, play with your children, see your friends or concentrate and even affects your ability to carry out everyday tasks. Despite the person’s desire to stay active, the body just can’t keep up. So it’s not surprising that consequences such as fatigue, frustration, sadness, anxiety and depression follow. The constant overlap between physical, psychological and social difficulties creates deep distress in this population.

Facing Prejudice

Despite the significant impacts associated with it, chronic pain remains largely stigmatized. Indeed, negative attitudes and beliefs that people living with chronic pain have become dependent on their medications, that they are exaggerating the severity of their condition, are just lazy or do not want to help themselves are widespread.

Chronic pain is a very real disease.

So, knowing the multiple consequences and prevalence of chronic pain, why is there still so much prejudice and stigma towards those who suffer from it?

The question remains unanswered. For some, what we cannot see simply does not exist. Because pain is an experience that varies from person to person, because we don’t have a specific tool for detecting it or because we can’t necessarily see it, pain can seem invisible. We have a harder time feeling sympathy or understanding for things that cannot be explained medically with medical tests or X-rays.

So, despite the many explanations offered by patients, they often have to deal with prejudices from health professionals, their entourage or the general population. Many people living with chronic pain feel that their pain is not understood by their friends, family, employers or even their health-care professionals, which adds to their feelings of helplessness, sadness and anger. In addition to dealing with the difficulties that chronic pain brings, these comments place an inestimable burden on sufferers.

Francine, who has been living with chronic pain for 15 years, regularly receives these types of comments from her family and friends:

“Well, you’ve only been walking for 10 minutes, you can do more. Just try harder.”

Sylvie, who has lived with chronic pain for 17 years, has to deal with her doctor’s comments:

“You are the only patient I have not been able to relieve with cortisone shots in 40 years, so perhaps you should consult a psychologist instead.”

These phrases, which can sound harmless to some, are often loaded with meaning for those who hear them on a daily basis. Accepting chronic pain as a disease is an important and difficult step. It should not be coupled with such pejorative comments.

Without being experts in the field, we can all play a role, in one way or another, in the lives of these people. Offering an active and understanding ear, not making quick judgments and acknowledging their condition is already a huge step in the right direction.

Support and communication with those around you are elements that should not be neglected and can certainly make a positive difference.

Marimée Godbout-Parent is a doctoral student in health sciences research at the University of Quebec in Abitibi-Témiscamingue. She has received funding from the Canadian Institutes of Health Research.

This article was written in collaboration with Sylvie Beaudoin and Christian Bertrand, patient partners. It originally appeared in The Conversation and is republished with permission.

We Need To Do a Better Job Educating the Public About Chronic Pain

By Carol Levy, PNN Columnist

It seems the pain community is so sharply focused on opioids that we tend to ignore what may be a more important issue: getting the public to understand chronic pain.

I hadn’t given it much thought, but a recent conversation with a friend brought it home to me.

“Jennifer” believed that someone with gender or sexual identity issues could be helped through talk therapy, mindfulness and relaxation techniques. Basically, anything that would take their minds off their struggles with sexuality.  

I told her people in pain get some of the same suggestions.

“What you're saying reminds me of what many people say about those of us in chronic pain, that psychotherapy, mindfulness and relaxation techniques can relieve our pain or even cure it. In reality, they don’t,” I said.

“Oh yes, they can,” Jennifer replied. “You have pain management doctors who offer mindfulness, psychotherapy and relaxation techniques. So, you do have cures.”

I shook my head, somewhat in sorrow.

“No, people who have incurable disorders like mine, trigeminal neuralgia, or other painful diseases like CRPS, Ehlers Danlos, lupus or multiple sclerosis won’t be helped by mindfulness or talk therapy. Those types of things don’t end the pain or cure the disease.”

To my amazement, this woman who holds her convictions very dear, replied, “You just taught me something. I didn't know that.”

And why should she? It is rare, if ever, that we hear chronic pain conditions called by name. The media doesn't do it, and we don’t usually hear or say it in general conversation. The name of the disease or disorder, and the level of pain they cause, usually go unmentioned.

We do hear about back pain, knee pain and other “aches and pains” that can be helped by braces, heat therapy, relaxation, and so on -- which helps further the belief that chronic pain is easily treatable. That is not to say back pain can’t be as debilitating as other disorders, but it is so common that it is taken for granted.

I think some of the blame falls on us. Many people think we act like addicts when we clamor for opioid medication. We resist efforts to reduce the dose and refuse to consider other therapies, many of which we’ve already tried.

We ignore the reality that we do not have a “right” to opioids. We have the right to get healthcare when we go to the doctor, but they have the right to decide what therapy and medications they will prescribe, if any.

As long as we spotlight our need for opioids, while ignoring the public’s lack of knowledge about painful diseases and disorders that can’t be cured, the more I fear we will continue to be ignored and disbelieved. And the more we’ll hear about talk therapy and mindfulness.

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.

My Story: How Opioid Therapy Saved Me and My Family

By Kim Halvorson, Guest Columnist 

I have had reoccurring pain episodes since I was 16 years old.  The one and only doctor we had on the Flathead reservation in Montana created even more problems for me than he solved. First, he offered me opioids (it was the 70’s) and wanted to inject the knots in my body with cortisone, without any diagnoses. My mother and I decided against his advice and began nutrition, exercise and therapy -- both mental and physical.  

When I was almost 30, the same doctor offered me a "new miracle med" that would block the pain signals in my brain. He prescribed the antidepressant amitriptyline, and I had my one and only manic episode. If he had taken any time to recognize my hyper self, maybe he would not have given me an antidepressant without any warnings about its side effects.  The strongest medicine I had ever taken, at that point in my life, was Tylenol.    

It took me a few years to recover from that total breakdown. Waking up in a psych ward is more than a little scary.  But the psychiatrist there listened to me and tried many different medications, until we landed on Klonipin and Trazodone to help me sleep. That was my answer for almost 30 years.

When my two sons were active toddlers, the pain bouts became too much.  My first opioid, at age 40, came with common sense and compassion from a wise and caring doctor. She could not find the underlying cause of my pain, but knew I was telling the truth. After all, I had said no to opioids for 25 years.   

She would write only 3 opioid scripts a year. If I needed more, then we’d have to find out what was going on inside my body. That worked for 10 years. And it taught me discipline.     

KIM HALVERSON

At age 50, I broke my back in 3 places and required daily opioids to move at all.  The doctor linked my meds to better physical function, and I was on that dose for 5 years without an increase. Opioids helped me to hold onto our house and attend my sons' games --- both of them are athletes.    

Then came the "big scare" as I call it.  When Florida lost its mind and went after the pill mills. The country over-reacted to the opioid crisis and in many places still is. The truth about Florida became a fiction about Montana and everywhere else, it seems. The pain clinic that had saved my little family for 5 years got rid of me and many other patients to protect their practice.        

For the next 4 years, a local clinic and a brave nurse practitioner bucked the system and got me half of what I needed.  It was better than nothing and I “saved up” pills by staying in bed until a game was on or some work had to be done.  Those 4 years were hard on me, and I ended up in a wheelchair and incontinent. 

I kept looking for a reasonable doctor and eventually found one. Once I was put back on the dose that worked for those 5 years, it only took a few months to regain my strength enough to face surgery and get a new artificial hip.      

The new hip was supposed to reduce my pain, but my pain level doubled. A new doctor found out why. I had scoliosis, and the surgery that was supposed to help me had locked me into pain 24/7. The first year after the new hip, a lump formed in my back and my body felt the pain I had been trying to avoid all my life.      

I know what is causing my pain now and why certain injuries were far worse than I thought they would be. That hip that looked “blown up” on an x-ray was the fulcrum of my frame, a curve in my spine and I have been wrestling with since I was 16.      

Even knowing all of this, my pain doctor felt pressured to stop helping people like me or anyone with opioids. I was abandoned, but found another doctor who just recently stopped calling himself a “pain management specialist” because of what is still happening to other doctors.    

I am already looking for the next reasonable doctor, just in case, but it is not supposed to be this way.  We shouldn’t have to fight this hard to live any kind of life.    

All of us need to join the fight. We need to start with ourselves and our support team, and then we must find allies within the medical profession and help them help us.  I will protect my three doctors completely.  I never do anything that could be misconstrued by anyone and often supply them with information to protect themselves, just in case.    

And then we all need to share our story.  Help each other with those stories.  Become our own best experts and advocates.   

Kim Halvorson lives outside Missoula, Montana.  

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.

5 Tips to Keep Your Pain and Stress Levels Down Over the Holidays

By Victoria Reed, PNN Columnist

Christmas is my favorite holiday, as it is for many people. Once Thanksgiving is over, I start getting excited for this once a year “season” when I get to wear my favorite sweaters, sing Christmas songs and shop till I drop! My home is transformed with decorations, lights and a Christmas tree filled with ornaments, old and new.

My mood is jovial, though the pain is still there, albeit faded into the background amid the distractions of holiday preparations.

My family has always celebrated Christmas. As a child, I remember lying in bed and being excited for Santa Claus to come. Of course, as I grew older, the anticipation and excitement waned a bit, as I eventually realized there was no Santa. However, I was always grateful for what I received and loved Christmas morning with my family. I treasure those memories from my childhood.

Though it’s a happy time for many people, the holiday season can bring stress, sadness or even loneliness to people suffering from chronic pain. It can be difficult for us to do some of the things we were once able to do effortlessly. Going to crowded stores and standing in long lines can be difficult if you suffer from back or joint pain. Fatigue can increase as well.

For some, the distraction of the holiday season might make your pain seem better, because you’re simply not thinking about it as much as you spend time with friends and family, attend holiday parties, eat delicious food, and take in the sights of Christmas. All can seem well, at least temporarily.

But for many pain sufferers, pain can actually increase over the holidays, due to increased demands on the body and the stress of shopping, entertaining and preparing holiday meals. 

I spend a good deal of time choosing gifts for my family. I also like to make gifts that have a more personal touch. But that sometimes triggers rheumatoid arthritis flares in my hands and wrists, and causes my neck and shoulders to get sore from sitting in one position for too long.

My fibromyalgia also seems to get worse as soon as the weather turns cold. I live in northeast Ohio and it is definitely not easy this time of year, but I can somehow tolerate winter weather. In fact, having snow on the ground actually contributes to that magical feeling of Christmas.

Regardless of what climate you live in, here are 5 tips to prevent your pain from worsening during the busy holiday season:

1. Shop online. This will allow you to avoid stressful traffic and crowded stores. You are also less likely to catch a cold, flu or covid when you shop from the comfort of your own home.

2. Limit gatherings to smaller groups to reduce stress and pain.

3. Eat healthier. The old saying is true: You are what you eat! You may be tempted to feast on cookies, pies and fatty holiday dishes, but you will pay a price for it. Stomach aches, sluggishness and weight gain are some of the side effects of Christmas.

4. Start shopping early and wrap your presents early. If you wrap a few gifts per day vs. all of them at once, you’ll be less tired and less sore from being hunched over. 

5. Keep exercising (if you are able), even if it’s just stretching or walking. If your muscles are tight, that tension will increase pain. Staying fit will help you navigate those long lines and crowds if you choose to shop in stores.

While the holiday season can be stressful for those of us suffering from chronic pain, taking precautions and making smart choices will ensure a fun and memorable holiday season, without the added discomfort.

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