Are You Back on the Pain Chain?

By Ann Marie Gaudon, PNN Columnist

Societal messages constantly tell us that we need to control any and all pain before we can be happy.

What happens when this is not possible? I’ve said it before: In order for me to be pain-free, I would have to be rendered unconscious.

Control of “clean pain” -- biological pain that can’t be fixed --  is very attractive, but in a never-ending quest to control it, we end up with the pain controlling us. That’s when “dirty pain” begins -- we focus too much attention on the negative thoughts and feelings associated with pain.

One form of dirty pain is called “Mental Scripts.” These include what our mind tells us about our pain experience. Here are some examples: 

• Searching for reasons you’re in pain: You might say to yourself, “I told you not to lift that. You know what happens when you aren’t careful!” 

• Yelling epithets to yourself in your head: Your mind might be shouting, “You hopeless idiot! You’re such a failure at life!”   

• Reciting rules you’ve established for yourself around your pain: You might tell yourself, “Exercise is not an option while I’m in pain,” or “I cannot live a good life with pain.” 

A second type of dirty pain is called, “Avoidance Behaviours.” This means anything you do or avoid doing in order to try not to feel pain. This behaviour can be particularly perilous because the act of avoiding an experience due to some feared outcome does not always reduce pain, it can actually increase pain. Here are some examples: 

• Using medications in an attempt to avoid pain altogether rather than to dampen your pain enough to live your life.  

• Refusing to exercise altogether because you are in pain. 

• Refusing to work or volunteer in any capacity because you are in pain. 

A third type of dirty pain we subconsciously engage in is called “Values Discrepancy.” This means choosing avoidance and moving far away from the life that you want to live.  

When you are knee-deep in Values Discrepancy you are living the antithesis of a life that you value. For example: 

• Giving up on a higher education because you fear the pain will not allow you to concentrate. 

• Quitting your dream job because of the pain you felt when you were there. 

• Choosing not to have a family because parenting could be difficult if you are in pain.

Avoidance behaviours (a form of trying to control) are indeed very seductive. They look like the answer. Have you ever seen an advertisement for any type of pain control? The patient takes the magic pill or treatment, the pain is completely resolved, and the patient is seen happily playing tennis or rolling around in the grass with their child.

Western culture rarely if ever shows us reality. The control paradigm is such that the more choices we make attempting to control the pain, the smaller and less meaningful our lives end up. We become stuck on the “Pain Chain.” For chronic pain patients, the manifestation of dirty pain typically looks like this:

The more we struggle against what is uncontrollable, the more we will suffer. The good news is that no one is fated to suffer from dirty pain for the rest of their lives. If you find yourself suffering from any of these symptoms, find yourself a qualified therapist in chronic pain management.

When chronic pain is part of our lives, we need more resilience, not less. We grow resilience by practicing and learning not be ordered around by our thoughts and feelings. Psychotherapy can help you with workable solutions to rise above life-draining, self-defeating patterns of behaviour.  

I once was choked off in the Pain Chain, and now I help others to unleash themselves. With the right tools, it is possible to get back to living a life in the service of our values – not in the service of our pain.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

How Fear Can Make the Coronavirus Worse

By Dr. Lynn Webster, PNN Columnist

At 7:09 am on Wednesday, March 18, 2020, a 5.7 magnitude earthquake struck Salt Lake City, Utah — the city in which I live. Though it caused little damage, the earthquake created immense fear. 

This occurred during a week in which the Dow Jones Industrial Average plunged, setting a record for the largest stock market drop in U.S. history. Although only about half of U.S. citizens own stocks, the impact of the enormous amount of wealth lost will have a ripple effect on every American. 

In addition, like the rest of world, we face the coronavirus pandemic. Because Salt Lakers have experienced a trifecta of calamities, our fear is palpable.

But intense fear is not limited to Salt Lake City. It is ubiquitous. People all around the world are experiencing nearly unprecedented levels of fear in the face of the pandemic. As a friend of mine said, it feels like an apocalypse of biblical proportions.

Fear is a primordial emotion that can protect humans from danger, but it can also be destructive.

Typically, fear is proportional to three factors: the magnitude of the threat; how well we can predict and control the potential harm; and whether we can see that the threat's end is in sight. Since we know so little about the novel coronavirus, all three factors contribute to our fear.

A 2016 paper published in the journal Disaster Health described Fear-Related Behaviors (FRBs) that occur during mass threats to a society. The study found that FRBs have four possible outcomes: they can increase harm, have no effect on harm, decrease harm, or prevent harm. Since we are all terrified, it may be helpful to know the consequences our fear may have.

What We Can Learn from the Ebola Outbreak

The 2013-2016 West Africa Ebola Virus Disease (EVD) outbreak may be the best and most recent example of how to predict the effects of FRBs on COVID-19. 

More than 28,600 people became ill from Ebola in Guinea, Liberia, and Sierra Leone. Given the virus’ high mortality rate of nearly 40 percent, it caused approximately 11,300 deaths.  

Examining the behaviors and outcomes of EVD may portend the outcome of the COVID-19 pandemic if the FRBs we exhibit with the novel coronavirus are proportionately similar to those caused by Ebola outbreak.

There were five overarching consequences of FRBs during the EVD crisis:  

1. Fear accelerated the transmission of Ebola. Those who lived in infected areas tried to escape by traveling to places they perceived as less infected. In effect, they tried to outrun the infection, but that proved impossible. They carried the disease with them, infecting Ebola-free communities and increasing the number of deaths. Ignoring the risk would have the same effect in the United States. 

2. Fear — in combination with lack of resources — discouraged some of those who were infected from seeking care for their disease. They may have died from EVD unnecessarily. Those who are underinsured or lack insurance in the United States may also decline to seek care. 

3. The fear of being exposed to EVD prevented some people with other life-threatening diseases from getting the health care they needed. That may happen now, too. People who have heart disease, diabetes, immuno-suppressed cancer, or chronic pain may not seek medical treatment because they fear being exposed to the coronavirus through contact with healthcare providers or other patients. 

4. Fear of EVD increased the number of people with mental health disorders. Fear-induced stress may have caused trauma and exacerbated existing mental health problems. Also, survivors involved in providing care to the ill were often blamed for spreading the disease. Some may have suffered from survivor's guilt. Depression and other mental health disorders were common in survivors.  

5. The belief that specific countries were responsible for the origin and spread of EVD led to widespread discrimination and ostracism. This, in turn, caused serious social and economic consequences. We see that scenario play out again whenever someone calls the coronavirus the “Chinese virus.” 

Fear Can Increase or Mitigate Harm 

On the other hand, fear can also mitigate harm. In the case of COVID-19, the prospect of what may happen if we do nothing is overwhelming. Therefore, our fear may motivate us to protect ourselves and our families by adhering to the advice of experts in such health organizations as CDC and WHO. That may save lives. 

Consider your own behavior in light of the five FRBs described above. Ask yourself: 

• Could any of your avoidance or panicked behaviors be accelerating the transmission of COVID-19? 

• If you have symptoms that suggest you may have the coronavirus, are you in denial rather than seeking medical care? 

• If you are coping with other medical conditions, are you avoiding the doctor's office, or are you pursuing the health care you need? 

• If you are feeling overwhelmed by the fear and stress inherent in this situation, are you seeking support or professional help? 

• Do you acknowledge, and help others understand, that China, as the unfortunate initial vector of COVID-19, bears no responsibility for it and does not deserve to be our scapegoat?

In such an interconnected world, our individual responses determine our collective experience. We must not let fear make the crisis worse. Fear can help protect us, but it can also be our enemy.

We don't need another enemy. The virus is enough of an adversary for us to deal with. We must avoid giving fear undue power over our actions and judgment at such a critical time. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

Misdirected Anger Over the Opioid Crisis Hurts Innocent People

By Dr. Lynn Webster, PNN Columnist

It's practically a cliché now to refer to the five stages of grief: denial, anger, bargaining, depression, and acceptance. However, it was Elisabeth Kübler-Ross's classic book, “On Death and Dying: What the Dying Have to Teach Doctors, Nurses, Clergy & Their Own Families,” that first helped us understand how people grieve.

Since the book was published over 50 years ago, mental health experts have recognized that grieving is a personal process, and that not everyone will experience all five stages. Sometimes, people skip a stage altogether, or spend more time in one part of the healing process than in another, or circle back to stages they have already traversed. It’s not always a linear process. Kübler-Ross believed grieving itself was a constructive process that moved towards healing.

While her book focuses on grief associated with death and dying, we also experience the various stages of grief with other losses. The coronavirus may cause the loss of our daily routine. Addiction may bring about the loss of our jobs, family support and even self-respect. Chronic pain may mean the loss of a life once lived. We can experience the stages of grief Kübler-Ross describes any time we are consumed by a loss.

Trapped in the Anger Stage of Grief 

For most people, anger is a part of grieving and sometimes a person gets a bit stuck in it. Experiencing prolonged anger can be destructive. We can internalize that anger, hurting ourselves, or we can express it toward others. In some cases, our rage can be directed at people we don't even know. 

Misdirected anger can cause harm. We create physical and emotional harm for ourselves when we rage at people and circumstances beyond our control. Also, we can cause harm to innocent people when they are caught in the crossfire of our misplaced anger. 

Pain News Network recounts how anger affected one of the pain community's clinicians, Dr. Thomas Kline. Kline advocates for people in chronic pain and has used social media to dispel what he feels are myths about opioids.  

A mother who lost her son to a heroin overdose came across Dr. Kline's Twitter account. In her grief, the mother took offense at what she perceived to be Dr. Kline's advocacy of opioids. She filed a complaint with North Carolina's medical board, alleging that he was "giving out information regarding opioids that is not correct and could cause harm."  

She was not Dr. Kline’s patient and neither was her son. In fact, she didn't even know him. But she was convinced he was a bad doctor because he treated people in pain with opioids. Her complaint triggered an investigation that led to Dr. Kline losing his DEA license to prescribe opioids and other controlled substances. Now his 34 patients are suffering.

It is horrible for parents to lose a child, and it is unfortunate that this mother has only a partial understanding of how opioids cause harm. 

However, we can understand her anger. She has suffered a loss, and she believes opioids killed her beloved son. "My son used opioids, and opioids are lethal. Now my son is gone. Therefore, opioids killed my son," may be her logic. 

Separating Prescription Opioids from Illicit Opioids 

It is flawed thinking to lump prescription opioids together with illicit opioids such as heroin. Prescription opioids have a medical purpose, whereas illicit opioids do not. This mother did not lose her son to an overdose of prescription medication.  

It's not only people who have had personal tragedies in their lives who may be inappropriately angry. We also see people who write about the opioid crisis, policymakers, regulators, and the public venting their contempt toward anyone who defends opioids as a legitimate therapy for some patients.   

People can be forgiven for getting angry in the moment. If they have experienced a personal loss from prescription opioids, it’s reasonable for them, in their grief, to blame opioids or the doctor who prescribed them. But it's harder to accept their vengeance when they draw a false equivalency between prescription opioids and illicit drugs.  

Opioids, like all medications, have benefits and risks. Unfortunately, people with chronic pain suffer because of misunderstanding and misplaced anger.  

People whose loved ones have died from addiction often receive sympathy, while people in pain are left unattended in the shadows. Of course, people with addiction as well as people with pain deserve treatment rather than abandonment. Anger at the doctors who use opioids to try to treat their illness is unhelpful and inappropriate. 

I'm reminded of Nan Goldin, a New York-based photographer who survived an addiction to OxyContin and has now devoted her life to fighting the opioid epidemic. Her anger is directed at the Sackler family and Purdue Pharma, whom she holds responsible for the opioid crisis — even though, according to The New York Times, Goldin "overdosed on fentanyl, which she thought was heroin."  

Neither of those substances are produced by Purdue Pharma.  

People in grief may transform their sorrow into rancor without looking squarely at the whole truth or confirming their beliefs with research. Their anger may feel healthy and productive to them, because anger provides an outlet for grief. The rage they feel against opioids and the people who manufacture, prescribe, or take them allows those grieving to not to have to deal with more difficult issues, such as the loss of a loved one or the real reasons why we develop addictions. 

In the final analysis, misdirected anger is destructive and harmful to innocent bystanders, who become collateral damage. It hurts others. It may hurt society. And it also hurts the one who is stuck in the grieving process and, unfortunately, has not yet come to a place of healing. 

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

The Other Epidemics

By Mia Maysack, PNN Columnist

Those who believe the coronavirus outbreak is the only epidemic underway are sorely mistaken. There are multiple epidemics happening due to opioid hysteria, primarily innocent patients being neglected in their pursuit of pain management.

This is being confused with the very real addiction problems that are on the rise. Too many don't know the differences between the two, nor do they seem to care.

These failures in our healthcare system and our human rights continue to be violated.

The last time there was a virus circulating in my home, I was thankful to have been able to hit up the nearest convenient store for necessities. My ID was checked for a cough suppressant. Had I been denied it, recovery surely wouldn't have been smooth or perhaps even possible for someone who literally cannot afford to become any sicker.

This is exactly what's happening to millions of people on a much grander scale, who are rightfully prescribed something by a professional -- which respectfully isn't anybody else's business. Their legitimate medical need is far more serious than the common cold.    

I'm passionate about this cause, though I’ve been shamed for speaking out because it hasn't been a large part of my personal story as pain meds are intolerable for me.   

However, I am not immune to its repercussions, having lost several people to overdoses and knowing many who live in a state of dependence upon a substance of some kind or another. I've witnessed what should've been a short-term treatment turn into something where a person literally feels as though they cannot live without.

But an addict seeking a fix and a patient desperate for pain relief aren't the same.      

I've seen the hopelessness firsthand when access doesn't come through. And even with it, minimal comfort is experienced for short periods of time, which is always better than the contrary. Having options for pain management as well as a health team that cares are direct contributing factors in quality of life or lack thereof.   

Missing a Lifeline

The present-day coronavirus panic shines light on another example. How is one to cope without water, toilet paper or canned food if or when this spreads further and possibly hinders the ability to simply maintain? What if you couldn't get what you needed and always felt under the weather? 

Adding insult to illness, why does it take the threat of a modern-day plague for reflection on things that should already be happening? 

Because of the opioid prescription crackdown, there are countless individuals who remain unable to grab hold of a lifeline. It has been taken away from them or has yet to present itself. Both are dire and require immediate attention, acknowledgement, awareness and action.       

Corporate profiteers and those who live by “Do No Harm” are working in tandem -- resulting in treatment being withheld, licenses threatened, and the lives of providers and patients alike being shattered. 

In response to these very real issues, we've reverted to extremes — despite the whole “it's a problem, get rid of it” approach not proving to have been a sustainable answer.  Ever. 

Another issue is that the pain community is so passionately up in arms that we often fight against each other.

Recently a colleague of mine literally stated they "felt guilty" because their discomfort had improved! When that happens, the tone becomes “then you're not that bad” and don’t have a right speak out. Or in my case, being physically incapable of tolerating pain meds has earned me the title of an ignorant bigot ableist.

People throw these insults around like grenades that obliterate any potential to connect or relate. I also find the trolling, comparisons, labeling and hate disheartening because it is so misdirected.

The intent should be to be on the same page as human beings who live in pain. It's not about what specific type, what caused it, how long you’ve had it, or whether a certain treatment option has helped you. It’s not a contest. This is far bigger and way more important than any of that. It's an opportunity to reconstruct the cracked foundation of brokenness that has become exposed.

But that won't happen unless we set differences aside, remain focused on what's important, work collectively in problem solving, and devote the same effort used to tear others down to instead cultivate a solution.  

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

A Pained Life: Rationing Pills

By Carol Levy, PNN Columnist

Well, it finally happened. I have been on codeine for many, many years. I have tried other opioid medications, such as morphine, Demerol and methadone, but none helped.

Truth be told, neither does the codeine, usually. Some days my pain from trigeminal neuralgia calms down when I take it. Other times, it has no effect.

For the most part, I take codeine because it gives me a false sense of control. It’s something I can do when the pain gets really bad. I let every prescribing doctor know that. And none has ever refused to give me a prescription. 

I take about one pill a week. Not because the pain is rare, I’ve just learned to stop doing many of the things that triggered the pain, such as eye movement and eye usage. I am now about 80% housebound as a result.

I’ve been having a bad time lately with my deep brain stimulator (DBS) implant. It makes the pain worse when I have the device turned on. The result? I have to take more codeine. 

The last time I saw him, the pain management doctor I’ve been seeing for Pennsylvania’s medical marijuana program wrote me a prescription for 120 codeine pills. The prescription called for no refills, but lasted for 10 months because I use the pills so rarely. I had no reason to expect he would not write it for me again.

The last appointment for the refill took literally 2 minutes. This is how the conversation went.

“How are you?” he asked.

“Fine. Thank you.”

“Anything new?” 

“I had a DBS implant a few months ago.” 

“Is it helping?” 

“No. Actually, it is making a major part of the pain worse.” 

“Well at least it is helping some part of the pain. What are you here for today? 

“My codeine prescription.” 

“Okay. Bye.” 

I assumed everything was fine and he would renew the same prescription.  

Since you no longer get a written script that you can read and carry, I was astounded when I got to the pharmacy to pick up the prescription and saw the bottle held only 10 codeine pills. And the prescription was for only 2 months. The doctor didn’t say a word about changing the prescription. 

I called his office. “I don't understand. He didn't say anything to me about reducing the amount. He didn't ask me how and when I take it. Yes, I told the nurse I take maybe one a week, but he never gave me a chance to explain why.”   

The nurse replied: “Well this is what he wrote for. And you will have to come back every two months for another prescription.” 

I have no problem with a doctor deciding it is time to try and reduce a medication, unless it is without explanation or discussion. This seems to be one aspect of the opioid crisis that seems to be ignored.  

I was seeing him once a year to meet the requirements for the medical marijuana program. Now, suddenly I need to come in once every two months for my codeine prescription. No explanation. No discussion. 

We blame the CDC, we blame the FDA and we blame the DEA. But we rarely blame the doctors for these arbitrary decisions.

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.

How to Survive Self-Isolation From Coronavirus

By Madora Pennington, PNN Columnist

Like much of the world, I am self-isolating to slow down the spread of the coronavirus. As a medically fragile person, I am afraid. My immunity is poor. I get frequent lung infections and I get them fast, without warning. Would I get a bad case of Covid-19?

I can imagine my death in the ICU, without family, on a ventilator, under protective gear. It’s easy for me to reconcile myself to this possibility, even accept it. I was born with Ehlers-Danlos syndrome, which prevents the body from making proper collagen and causes a host of other health problems.

I am an expert at homebound isolation. I did it for many years, too sick and in too much pain to function. My only job was to survive another day of agony and not lose my mind. Seven years ago, experimental treatment overturned my life sentence of pain and I was freed from my prison of disability.

I sheepishly admit isolating myself from the coronavirus is a lot more fun. This time, I am not sick. Even better, I am not alone. We’re all in this together.

My old life was awful, but it was simple. I had a schedule with targets to accomplish, which may seem laughable to someone who has not experienced prolonged severe illness. Shower, water a plant, unload the dishwasher.

I awoke in the morning, feeling lucky if I got a good chunk of sleep, and resentful if I did not. My spine was so fragile, the pain of laying down on my bed led to torturous spasms. I took morphine, Vicodin and carisoprodol in hopes of falling asleep before the pain hit and hoping to stay asleep after it did. The drugs worked about half the time.

My husband was careful not to wake me as he got ready for work. Up alone, swimming slowly through the thick liquid of my morphine hangover, I faced my favorite part of the day: the bitter warmth of coffee and a view of the city.

In my old life, I lived for simple pleasures because that was all I had. Food was one of them. Cooking dinner every night. Brunches on the weekend. I felt deep appreciation for the times when my pain or my brain fog wasn’t so bad, the times when I had a little energy. I dreamed that one day I might get better.

This was before Facebook, before podcasts, before medical information was freely available on the internet. Life was lonely then, but we didn’t know anything else. We kept my struggles private. No one except my doctor knew how sick I was. That gave me a sense of dignity, as a genetic disorder is so difficult to explain. Better not to, I thought. Besides, the hopelessness brings other people down, and that’s just impolite.

We lived in a one-bedroom apartment because I didn’t have the strength to get around anything bigger. I made the bed. I took walks every day. I fought to take care of as many of the household chores as I could. There was something monastic, perhaps even spiritual about my old life, a life where I spent most of my time alone.

When I got better and exited my sickbed, my life became unbearably complicated. Drug withdrawal, integration into the world, working and building a life. I was, I shamefully admit, deeply depressed. Adjustment Disorder is an emotional disturbance one goes through while adapting to the stress of significant life changes.

Stay On a Schedule

It’s been an easy transition to coronavirus self-isolation. I remember what worked from my old homebound life. Be on a schedule. Every day do this, and then that. Shifting from one task to another makes the day seem fuller. I like to lift some weights when I get stuck writing. Or maybe scrub the kitchen sink. Jump up and fold the laundry. Reorganize something, even if it’s just one drawer, for a quick sense of satisfaction.

Commit to regular meals, as opposed to all day snacking, so you won’t go back to work with clothes that don’t fit. Get sunlight on your face, as early in the day as possible. I hope you have trees or grass or sky to enjoy. They positively affect mood.

Make your bed and stay out of your bedroom. Sleep is a conditioned response. If you lay in bed while reading or watching TV, you send your brain confusing signals about when sleep time is supposed to be. Bedtime rituals help get sleep hormones flowing. Follow the same pattern every night.

Talk on the phone or even better FaceTime or Skype with friends so your brain can have the satisfaction of mirroring and the stimulation of responding to another human’s emotions. Accept your humanness, that you don’t have much control over your life and never did.

There is so much stimulating content now, from streaming services to podcasts, Kindle and audiobooks, ways to feel part of humanity and not so alone. Type your thoughts and feelings into a journal to help process and keep them moving.

My coffee ritual is still my favorite part of the day. It’s reliable and always there for me. I stocked up on great coffee, anticipating society shutting down, along with spam and popcorn, cold medicines and laundry detergent.

You can go outside for a walk, if not many people are around. Walking is relaxing. Gently swinging your arms as you go relieves back pain. My husband and I strap on weights and walk the neighborhood. We wave to our neighbors, most of whom are also living homebound isolation. We stand far apart as we chat.

“Let me know if you need anything,” I say. “I’ll disinfect it and hurl it over to your yard.” They agree to do the same.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.

The Other Opioid Crisis: Patient Abandonment and Denial of Treatment

By Georgia Carroll, Guest Columnist 

I am a patient advocate and pain sufferer. I have the usual pains associated with rheumatoid arthritis, a bad knee and a few bulging lumbar discs. But my personal story is nothing compared to what most of the patients I work with are going through. 

I represent only a small fraction of the tens of millions of patients across the U.S. who have been abandoned by their doctors and denied treatment for the pain caused by diseases, injuries and mental health conditions. They are the unintended victims of efforts to curb opioid overdose deaths, even though studies show less than 2% of overdoses involve prescription opiates written for the deceased.  

Leaving these patients without medical care is inhumane and only exacerbates the opioid crisis, forcing some to turn to the street for relief. The victims of this abuse have been crying out for help since before 2013 and nothing has been done. They have been left to suffer, deteriorate and die. Lack of action to protect these patients has elevated the opioid crisis to a self-fulfilling phenomenon.  

Frankly, I was ignorant of how bad the situation was until a few months ago, when our doctor was arrested. For the last five years, he and I have been focused on teaching patients to integrate alternative therapies into their treatment regimens to help them reduce opioid dosages and frequencies.   

Now it is in my backyard and we are the victims, because no one gave a damn about 50 million suffering souls.

We are not drug addicts looking for the next high. We are medical patients who need doctors to responsibly prescribe the opiates we need for relief.

GEORGIA CARROLL

None of the legislation passed in recent years does anything to protect doctors from ill-conceived prosecution or their patients from being abandoned. The Department of Justice, DEA and local law enforcement have not been able to effectively diminish the availability of street drugs, much less stop their distribution. So they misinterpret and pervert the CDC opioid guideline to make their own rules for investigation and prosecution of the “low hanging fruit" of prescribers diligently treating their patients.

Physician intimidation is unacceptable. Patient abandonment is unacceptable.  

A case in point: The doctor of most of the patients for whom I advocate was arrested and the clinic closed without warning last November. The staff were threatened and intimidated, and medical records and computers confiscated, including the external hard drive backup.  In a flash, the doors were locked and 7,000 patients were abandoned with no recourse and no source for prescription refills, even blood pressure and insulin, much less chronic pain, panic attacks or depression. 

It took 10 days for the local district attorney to return the backup drive for patient records. It was blank, completely scrubbed.  We asked the DA to make medical records available to the patients so they could engage new physicians. They refused. Not their responsibility. "Clinic should have had backup," we were told. 

On day 73, after many letters from patients and doctors requesting the files and two street demonstrations, they finally agreed to download individual patient's records to a disc, on request, to be picked up at the DA's office in person or by a representative. 

Doctors and medical facilities across the country are refusing to write prescriptions for opiates to anyone, for fear of suffering a similar fate.  Instead, they are pushing patients to expensive and repetitive injections or surgery.  

Our doctor has been "flagged" by other local doctors, who refuse to even see a patient with his name on the medical files or prescription, even though he is highly respected by most of them. Call it "Not Me Next Syndrome."

The hundreds of patients I work with have now been without effective pain and mental health disorder medications for over 120 days, with no relief in sight.  They have been through the agony of withdrawals unassisted. What recourse do they have?  Continued debilitating suffering, accelerated physical and mental health decline, street drugs and the ultimate relief of suicide.  

These are the calls I receive almost daily. How would you advise them?  How would you manage your symptoms or those of a loved one?  How would you cope?  

Several states have begun to introduce bills to protect doctors from prosecution for doing their job and patients from being cut off cold turkey from their prescribed opiates. But these individual state efforts are inadequate given the number of patients across the country already affected. Patient abandonment and denial of care is now a national public health epidemic and demands immediate, emergency action. 

Georgia Carroll lives in Texas.

Pain News Network invites other readers to share their stories with us. Send them to:  editor@PainNewsNetwork.org. 

Being Taken Off Methadone Is Inhumane

By Wendy Cooper, Guest Columnist

I am a pain patient and diabetic entering my second week of detox.  My doctor will no longer prescribe methadone because he’s afraid of being targeted by the DEA for not following the “voluntary” CDC guideline.  He said they are putting doctors in prison by the hundreds and it’s just no longer worth the risk. 

I was on methadone for years.  I am also a gastric bypass patient, so I will not be able to take any type of NSAID (non-steroidal anti-inflammatory drug) for pain. 

When my doctor first suggested methadone I was totally confused.  I told him, “But wait, that’s for drug addicts.”  Well it is, but it’s also very effective for pain control.  After taking it for a month I was so happy.  It totally handled my pain and I didn’t have all of the other side effects, like making me sleepy and lethargic.  My mind was clear. I had my life back.  Yes, for many methadone works.  Sadly, it used to work for me, too.  

I am now back on insulin every day due to the pain, after having been off of insulin for years. Methadone did that.  It started the ball rolling in a positive direction. I was able to exercise more and take care of my family, because the pain relief helped get my diabetes under control. Not anymore. 

Supposedly the danger is because methadone, which has been around for over 50 years, has an effect on the respiratory system.  Well, this is true of many medications if they are not taken correctly.  If I take too much of my insulin, it will have an effect on my respiratory system too — as in me not breathing at all because I will be dead. 

Tons of medications have dangerous side effects if not taken properly.  What used to happen is you would weigh the benefits and the risks with your physician and then the patient would make an informed decision. 

WENDY COOPER

Why does the government have the right to take away medication that has changed my life for the better?  Why am I being treated like a child by assuming I will not take my medication correctly?  I can’t think of any valid reason for this except MONEY.  Methadone is $35 per month, while buprenorphine (Suboxone) is close to $300. 

Buprenorphine is not a good fit for pain patients.  We are much more likely to go to the emergency room for an acute event than non-pain patients.  What will they give us for pain? 

It’s my understanding that pain medications are complicated when you are facing surgeries while on buprenorphine.  I have four surgeries scheduled this year.  Am I supposed to wean myself every time I get ready for one of my surgeries? 

I always felt safer from any type of addiction issue because methadone took away the “feel good” effects of Percocet.  If I hurt myself, I could take a Percocet and it would help with the additional pain. 

I don’t have an addiction problem, but like most pain patients I am concerned about developing one. I’ve always felt it is my responsibility to take precautions and govern myself with my own guidelines.  Well, that benefit is gone.  I don’t want to live anymore. This is inhumane. 

Wendy Cooper lives in Florida.

Pain News Network invites other readers to share their stories with us. Send them to:  editor@PainNewsNetwork.org. 

Canada’s Chronic Pain Task Force Surveying Patients

By Marvin Ross, Guest Columnist 

In typical government fashion, the Canadian Chronic Pain Task Force continues to delay taking a stand on the plight of pain patients by initiating a new survey, while still blaming doctors and patients for the opioid crisis. 

The Task Force was established last year to help Health Canada better understand the needs of chronic pain patients. Their preliminary report in June found that anxiety and fear about opioids were causing pain to go untreated:

“Some Canadians have been unable to access opioid medications when needed for pain and function. Others have faced undue barriers to obtaining or filling their opioid prescriptions, and some have had their opioid dose abruptly lowered or discontinued. This has resulted in unnecessary pain and suffering, and has led some Canadians to obtain illegal drugs to treat their pain. We must do more to strike the right balance – to promote opioid prescribing practices that balance the benefits and risks of these medications based on the individual needs of each patient.”

Those initial findings were consistent with the results of a survey of over 700 pain patients conducted by the Chronic Pain Association of Canada (CPAC). That survey found that nearly half of Canadian patients had their pain medication reduced, many were in much greater pain, had severely diminished quality of life, lost doctors or had poor relations with them, attempted suicide or turned to street drugs for help.

At that point, the Task Force response should have been to make recommendations to reverse those negative impacts on patients. Two evaluations that replicate each other should be sufficient to take action to relieve the suffering caused by Canada’s 2017 opioid prescribing guideline.

But that is apparently asking too much as they've decided to do another survey through invitations to their online questionnaire. These are the key questions: 

• What challenges and barriers to understanding, preventing, or managing pain exist in your community and in Canada?  

• What needs to be done to respond to these challenges and barriers? 

• What is working to address pain in your community and in Canada? Please provide specific examples of practices and/or activities. 

• What is it about these practices/activities that makes them successful?  

• What should be the 3 top priorities for research in pain from your point of view?  

• What would help to better integrate research and new knowledge into education and training, policy, clinical practice, and everyday life?  

• What other strategies would help us to better understand, prevent, and/or manage pain in Canada?

Well, the main barrier to managing pain is the adherence by doctors to the prescribing guideline and their fear of losing their medical licenses if they don’t. Nothing will restore functioning to those impacted without rescinding that. The rest of the questions are inane. 

Where Is the Evidence?

As I pointed out in an earlier PNN article, Health Canada implemented the guideline based on weak evidence that the increase in opioid deaths result from inappropriate prescribing by doctors and misuse by patients. PNN columnist Ann Marie Gaudon attempted to obtain the research that Health Canada used to justify their claims and it was like pulling teeth, as you’ll see in this phone call. 

When the research was finally obtained, it didn’t prove a link between prescribing and overdoses. When CPAC sent them a critique of their studies, Health Canada replied that they have much more evidence, but then ignored requests for copies. CPAC has submitted a Freedom of Information request and is waiting for a response. 

Health Canada and the Chronic Pain Task Force continue to base their work on the many myths and misperceptions associated with opioid prescribing, which were debunked in a review recently published in Pain Management Nursing.  

A policy based on faulty logic to solve a problem (addiction and opioid overdoses) caused a new problem by condemning innocent people to unnecessary pain and suffering. Meanwhile, the original problem only grows worse. It is time to go back to the drawing board and accept what every Sociology 101 student knows. There are unintended consequences. Until that happens, nothing will be improved for anyone.   

But then, to make matters worse, this week Health Canada announced nearly $3 million in funding “to help people living with chronic pain.” Most of the money will apparently be spent on treating and preventing addiction, not treating pain. Saskatchewan will get $1.7 million from the Substance Use and Addictions Program and Alberta will get $1.2 million to “improve care delivery including opioid prescribing practices.” 

Health Canada does not seem to be able to distinguish between people with chronic pain and those with substance abuse problems. They are not the same and it is insulting to combine them. It is time that Health Canada learned to distinguish between dependence and addiction. 

Marvin Ross is a medical writer and publisher in Dundas, Ontario.

A Toxic Violation

By Mia Maysack, PNN Columnist

On Saturday, I woke up to an experience far too common.

A column I wrote on my pursuit of holistic health had been shared in an online community for people with pain and chronic illness. The column was referred to as "shameful” and full of "bull crap." I was accused of being "insane,” a "bootstrap ableist" and “spreading hysteria.” You get the idea.

This type of toxic negativity online is mostly faceless and comes from hiding behind the comfort of a device screen. It doesn't belong in a supposedly safe space, nor does it help or improve anything. Even on my worst, most painful, dark and isolating days, I never have nor will I use that as an excuse to tear others down. 

Some people in the pain community claim to desire understanding, acceptance, empathy and compassion -- all the while offering anything but.

So many also demand change without the realization they’re contributing to the very problems they claim to want to resolve. It would seem the only fingers being lifted are to spread hate -- as opposed to directing that same passion toward legislative reform, writing a bill, calling Congress or signing a petition, for example.   

If we're not physically healthy enough to contribute fully to life, then bullying should be the last thing we’ve got the energy and time for.   

This takes me back to the very first (and last) "support group” I attempted to be a part of prior to starting my own. It’s prestigious, well known and in cahoots with many other affiliations.

Because I'm not spiteful and feel there's already enough hurt to go around, I won’t name or put them down.

In that group are thousands of people from around the world who could attest to the way I felt all my life. I hoped that that I’d finally came across a place where I belonged.

But when confiding to these people about a treatment plan gone awry (I still live with the repercussions to this day), they turned on me -- claimed I was just attempting to scare them, making things up, and that I should've kept the information to myself. Even my medical background was called into question, despite the grief I was still enduring over loss of career.

To make matters worse, prior to me even seeing any of this, the group’s administrators muted further commentary so I wasn't even able to defend myself or the way my words had been twisted. But they still left it there as a spectacle for all to see. It struck me to the core for multiple reasons, so I ultimately chose to step away and haven't looked back. 

Those of us who have come to a point of using our last bit of energy to reach out cannot afford being pushed off the ledge we are already on. The fact that isn't being contemplated or taken into any consideration is a sickness in itself. This toxic negativity is real and may be why my approach is internalized by others at times, even though that's not the whole picture of who I am.

How I live with multiple intractable, lifelong and incurable diseases is by continuing to study and having an intimate relationship with science via my own body chemistry.   

Whether it's a convenient truth or not, there's merit to the parasympathetic system. There’s power in working through trauma, taking ownership over our thoughts, approaching ourselves as a whole person and not allowing the conditions themselves to dictate our identity.

I've often been asked how I am able to live my life under the scrutiny of what I go through.  I don’t claim that I’m fixed, cured or have anything close to all of the answers. But I do know that instead of complaining, wallowing, and holding onto anger and resentment -- I choose to not allow this to define me.  My heart is poured into service, volunteerism and fighting for human rights -- for everybody, even those who throw dirt on my name. 

We are not wrong for how we feel. It's reactionary to lash out or play the blame game by turning on each other. It only intensifies the battle we're already in. Just because someone else's journey looks different and doesn't align with yours does not excuse, justify or make it acceptable to judge, ridicule or belittle them.

As long as those toxic violations remain a part of our approach to ourselves and one another, we shall remain sick.  

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

Be Strong and Proud on Rare Disease Day

By Roger Chriss, PNN Columnist

This coming Saturday, February 29 is Rare Disease Day worldwide. The day recognizes thousands of rare diseases and disorders that together impact millions of people worldwide, both patients and their caregivers.

The goal of the day is to raise the profile of the rare disease community and to spread the word: “Rare is many, rare is strong and rare is proud!”  

According to the National Organization of Rare Disorders (NORD), there are over 7,000 rare diseases that are chronic, progressive, degenerative, disabling and frequently life threatening. Many rare diseases are familiar to chronic pain patients, from Trigeminal Neuralgia and Chiari Malformations to Porphyria and Ehlers-Danlos syndrome.

A disease is considered rare in the U.S. when it affects fewer than 200,000 people, while in Europe a disease is rare if it affects fewer than 1 in 2,000 people.

Because there are so many disorders, a total of 300 million people worldwide are thought to be affected by rare diseases. And though each disease is unique, many share common features like chronic pain and limited mobility, and require complex medical care.

Events are planned throughout the week leading up to February 29. NORD is hosting a variety of events, including a gathering at the International Spy Museum in Washington, DC on Saturday.

The FDA held a public meeting on Monday to update stakeholders in the rare disease community on the agency’s efforts to improve treatment for rare diseases. That includes a new request for applications to its Orphan Products Grant Program, which funds clinical trials of so-called “orphan” drugs that could potentially be used to treat rare diseases.

The National Institutes of Health is coordinating panel discussions on Friday, February 28 in Bethesda, MD to improve diagnosis and treatment, expand clinical trial resources, and increase awareness of rare diseases.

In all, NORD lists over 400 events in 106 countries marking Rare Disease Day, including conferences, research presentations, exhibits, walks, rallies and a variety of fundraisers.

Rare Disease Day started in 2008 with the first events held in Canada and Europe. The date February 29 was chosen because it is rare (Rare Disease Day is on February 28 in non-leap years).

Treatment Often Limited

Rare diseases and disorders often go undiagnosed and untreated. Due to their rarity, expertise, treatment and resources are limited for people living with a rare disease, who can also face discrimination at work and school.

Research on rare diseases can actually help improve understanding of more common disorders and lead to new treatments. For instance, Yale neuroscientist Dr. Stephen Waxman discovered the gene SCN9A and its role in two painful hereditary neuropathies. Treatments for these disorders may help people with many other forms of peripheral neuropathy, as Waxman explains in his book, “Chasing Men on Fire.”

Moreover, rare diseases are often misunderstood. They do not look like typical illness and may require unusual forms of medical care. So Rare Disease Day also represents a chance to raise awareness about the importance of research, specialist centers, and healthcare professionals who work on such disorders.

Although most rare diseases do not have a cure, they can all be managed and patient lives improved. Rare Disease Day is an opportunity to focus on promising research, improving patients’ lives, and promoting action.

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

Did OxyContin's Reformulation Really Lead to More Heroin Use?

By Roger Chriss, PNN Columnist

A common belief in the opioid overdose crisis is that the reformulation of OxyContin in 2010 led to a large-scale shift to heroin. Seven years after making the pills hard-to-crush to discourage snorting or injecting, The Washington Post reported the abuse-deterrent reformulation had made OxyContin “the chief driver of the explosion in heroin overdose deaths.”

The primary source of this claim is a National Bureau of Economic Research (NBER) paper that states “a substantial share of the dramatic increase in heroin deaths since 2010 can be attributed to the reformulation of OxyContin.”

The NBER paper used data from the National Survey on Drug Use and Health (NSDUH) and the Drug Enforcement Administration to assess usage levels of OxyContin and other prescription opioids, and data from the National Vital Statistics System to measure overdose deaths.

The researchers found that “states with the highest initial rates of OxyContin misuse experienced the largest increases in heroin deaths.”

But this conclusion is now being challenged. A recent study in the journal Addiction Behavior looked at NSDUH data from 2005 through 2014 to evaluate the impact of the reformulation on individuals with a history of OxyContin misuse.

The results showed “no statistically significant effects of the reformulation” on prescription opioid misuse or heroin use. In fact, researchers found a “net reduction in the odds” of heroin initiation after the reformulation.

“Thus, the reformulation of OxyContin appears to have reduced prescription pain reliever misuse without contributing to relatively greater new heroin use among those who misused OxyContin prior to the reformulation,” the authors concluded.

Psych Congress also reported there was little evidence of a shift to heroin from prescription opioids, saying drug trafficking data “don't fully support the often-heard conclusion that efforts to limit access to prescription opioids led to a mass migration to heroin."

Murky Data

The reason for the different conclusions is not clear. But much of what is assumed about abuse-deterrent reformulation is not holding up. Last summer, STAT News reported that rates of OxyContin abuse were similar or higher three years after the drug was reformulated. According to one survey, less than 5 percent of long-term abusers gave up OxyContin, suggesting the reformulation didn’t accomplish much.

Data on heroin use also includes considerable uncertainty, and applying state-level data-sets to understand individual usage patterns is tricky. Plus, data on overdose fatalities can be hard to parse since many victims die with multiple drugs in their systems, and toxicology reporting varies by state.

Since OxyContin’s reformulation, six other opioid medications have been approved by the FDA with abuse deterrent properties, costing drug makers hundreds of millions of dollars in research and development expenses.

Figuring out what happens after a prescription opioid is reformulated is important. Current public health policy and prescribing practices are assuming risks and benefits based on limited evidence. If something different or perhaps more complex is happening, then we need to look harder and make changes.

The implications here are also important, including determining liability and damages in the opioid lawsuits, developing effective public health measures for addiction treatment and the overdose crisis, and creating better risk assessment for pain management.

The impacts of the OxyContin reformation may be smaller and more subtle than previously thought. If the new findings hold, then we may have to rethink the benefits of abuse-deterrent formulations and the trajectory of heroin use. In other words, we need to keep looking closely at the overdose crisis and not assume we have it fully figured out.

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

A Pained Life: Prisoners of Pain

By Carol Levy, PNN Columnist

This being President’s Day in the United States, I was reminded of a popular quote attributed to President Franklin D. Roosevelt.

“Men are not prisoners of fate, but only prisoners of their own minds," FDR said.

This is a wonderful quote. For someone in a wheelchair and so physically limited, and who was able to make a very successful and hopefully fulfilling life, FDR’s philosophy makes sense.

Not so much for those of us with intractable pain. Our minds may not be imprisoned, but our bodies are. Our fate is to have pain.

This is not to diminish what President Roosevelt accomplished, or the successes of others with physical or mental limitations. President Roosevelt could not walk without assistance. That was not something he could change.

But pain changes. One moment we may have so little pain we can do the dishes, play with the kids or, in my case, read a book or sing in a chorus. Then boom! The pain, the pain. I can't continue with what I want to do.

We become prisoners of pain.

As many of us know, the invisibility of our pain makes others skeptical. Out of sight, out of mind. I don't see your pain, ergo it doesn’t exist. We are different in so many ways from people like FDR who have disabilities that are plainly visible.

This seems to include even the ability to study and report on findings related to chronic pain. I was researching deep brain stimulator implants for chronic pain, because of the one I recently had implanted. I read a number of studies. Some authors reported good outcomes, others not so good.  

The more I read, the more I realized that research on procedures and treatments for chronic pain cannot be interpreted the same way as studies about cancer and other diseases.  Did the cancer treatment have an effect that benefited the patient?  Yes, they lived longer and the cancer did not spread. Or perhaps the outcome was no, the cancer metastasized and the patient died.   

For us, the conclusions are not as simple. The answers are subjective. Is your pain better? Is it worse? Is it the same? No matter how one answers, can it truly be comparable with those of others in the same study? 

On a pain scale of 1 to 10, what I call a one may not be what you consider a one. By the same token, my 10 may not be your 10, so how can there be a comparison? 

I was once asked if I would be willing to take a survey on suicides or attempted suicides by pain patients. I declined. Absent a suicide note specifying that “I cannot take the pain anymore,” there is nothing but speculation and supposition as to someone’s motive and to what degree it was related to chronic pain. 

We are all prisoners of a disorder that is difficult to treat, much less cure. It will require imagination to put us all in one category and find ways to help 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.”

Are You at Higher Risk for Coronavirus?

By Dr. Lynn Webster, PNN Columnist

Over 67,000 people have contracted the new coronavirus, now officially referred to as COVID-19. Many of those who died — over 1,500 people to date — were already in poor health.

Fears about the virus spreading led to more than 30 million people being quarantined in the coastal province of Zhejiang, China — which is more than 500 miles away from the epicenter of the virus in Wuhan, China. As I write this, the U.S. and 25 other countries have a confirmed diagnosis of coronavirus

It is clear that COVID-19 qualifies as an epidemic and some experts predict it could become a pandemic (a pandemic is the global spread of a virus, while an epidemic is contained in a particular region, such as China.)

The people with increased risk for experiencing severe symptoms, and possibly dying of COVID-19, are seniors and those with chronic illness. Of course, many people in chronic pain are part of both risk groups. The mortality rate of COVID-19 has been reported to be about two percent.

People with chronic pain may be more susceptible to viruses in general, because chronic pain can change the way our immune systems work. McGill University researchers found that chronic pain changes the DNA in T-cells, a type of white blood cell essential for immunity. Researchers were surprised by the number of genes affected by chronic pain, and hope their findings will lead to new treatments.

Preventing Infections

According to the Centers for Disease Control and Prevention, symptoms of COVID-19 are similar to those of other viruses: fever, coughing, and shortness of breath. Symptoms may be mild or severe, and sometimes deadly.  

Most troubling is that the virus causes respiratory difficulties that can lead to pneumonia — and antibiotics are worthless against viral pneumonia.

In severe cases, COVID-19 can also cause organ failure. A full recovery, according to The Guardian, “will depend on the strength of their immune system."

One of the most effective methods to reduce illness and mortality from viruses is to develop and use a vaccine. Vaccines prevent an estimated two to three million deaths worldwide every year, according to WHO. 

Developing new vaccines used to take at least a decade. However, thanks to recent medical advancements, it may be possible to develop a vaccine that can prevent COVID-19 in a matter of months.  

World Health Organization (WHO) Director-General Tedros Adhanom Ghebreyesus has called COVID-19 "a very grave threat." However, Ghebreyesus stresses that while we wait for a vaccine to be developed, we are not defenseless. The CDC recommends following the usual advice about protecting yourself from viruses: stay away from people who are sick; wash your hands and avoid touching your eyes, nose, or mouth with unwashed hands; and clean and disinfect objects that you touch. 

Since chronic pain can compromise the immune system, pain patients should follow the best available advice to protect themselves from exposure to COVID-19. The potential of infection is a serious issue that should not be dismissed, particularly for people with chronic pain and illness. 

Feeding on Ignorance 

One of the most significant threats to the spread of disease is social rather than medical: the dissemination of rumors and false information, such as conspiracy theories by anti-vaxxers. Even intelligent people with otherwise good reputations, such as Robert Kennedy, Jr., are promulgating nonsense about vaccines through social media to millions of people. These efforts must be discredited and stopped.  

According to a recent Gallup poll, the pharmaceutical industry is regarded more negatively by Americans than any other industry. There are well-known reasons why the public has a dim view of Big Pharma, but it’s the only industry that can prevent the deaths of an untold number of people during pandemics. In this situation, we need to cheer them on. 

Immunization is important to stop the spread of viruses. But first, the vaccines must be developed. Once they are available, people with chronic pain should discuss the potential benefits and risks of immunization with their physicians.  

President Trump recently said the coronavirus may disappear by April. This is a dangerous statement. In the United States, most viruses wane in the summer, but not always and they usually reappear by fall. Dr. William Schaffner, medical director of the National Foundation for Infectious Diseases, points out that some respiratory viruses may exist year-round in other parts of the world.  

There is never a good time to disregard science. But if there were, the start of a new pandemic surely would not be it.   

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed are those of the author alone and do not reflect the views or policy of PRA Health Sciences.

Hearts Go Out to Our Personal Caregivers

By Barby Ingle, PNN Columnist

With Valentine’s Day coming up and February being Heart Month, I thought it would be fitting to say thank you to my caregiver and husband, Ken Taylor.

Ken has been working overtime this past year, and especially in the last few months as I have been ill with Valley Fever. He is one of those caregivers who dedicate their lives to helping pain patients, making our lives better just because he cares.

Like many caregivers, Ken is not paid for assisting me or the many others he has helped over the years. He does it out of love, respect and dedication.

Caregivers have a large responsibility once they take on the role. Ken has helped me with personal care, such as bathing, grooming, dressing me, and helping with laundry or other cleaning duties that were once things I loved doing.

Not being able-bodied has really put a lot of pressure on Ken, but he makes sure I am taken care of every day.

Luckily for me, he is also great at cooking. I am the worst cook I know and was that way even before I developed disabilities from chronic pain and other rare conditions.

Ken loves to cook and does most of the meal prep, shopping and other housekeeping duties. He does it with a smile most of the time.

KEN TAYLOR AND BARBY INGLE

Some other responsibilities Ken has taken on include help with packing for a trip, making sure my wheelchair was charged up, providing transportation and being a great emotional support for me. Many times over the years he was the one who made sure I was put together and looked “camera ready” when we had a TV crew filming or doing interviews as part of our advocacy for the pain community.  

Ken gets love, credit and thanks from me often, but I sometimes feel that his work – like most caregivers -- is not as appreciated by society. People don’t realize how much our caregivers help us.

Here is a short list of 10 things that caregivers do: 

1. Assist with personal care such as bathing, grooming, dressing, toileting, exercise, meal preparation, shopping, housekeeping, laundry and other personal errands

2. Care for the elderly such as orienting someone with Alzheimer’s disease or dementia

3. Communicating with healthcare providers as an objective advocate and relaying information from providers to other family members

4. Providing support as a stable companion and confidant in all matters personal, health-related and emotional

5. General healthcare such as overseeing medication use, appointment reminders and help with exercise

6. Home organization and cleaning

7. Mobility assistance such as help with getting in and out of a wheelchair, car or shower

8. Monitoring a care plan and noticing any changes in the individual’s health and reporting them to healthcare providers

9. Providing companionship and general supervision

10. Transportation such as driving to and from activities or running errands

Our caregivers also help us navigate and negotiate our way through the complex healthcare and education system. They are our voice when we’re not up to the challenge of a given situation.  

Accepting help from a caretaker doesn’t mean giving up your independence. By accepting help when needed, you can build on your ability to help yourself and spend your energy on enjoyable activities that would be missed otherwise. Caretakers provide guidance, family empowerment and appropriate help. That is why it is important to include them in your care decisions and in setting expectations.  

One goal I have as a pain patient is to increase my daily activities as much as I can. Sometimes for me this includes the use of a wheelchair and other assistive devices. I look at them as a way to get more activities done independently. For years I was unable to walk long distances, so I got a scooter and was able to ride two blocks over to our mailbox to pick up the mail. Once I got my scooter, it gave me more freedom and I was able to accomplish more, relieving some of the duties Ken was doing.  

Thank you with all my heart for my caregiver! May he always choose to help me when he can, take breaks when he needs them, and may we support each other in all our days. Thank you to Ken and all caregivers who are making our lives more manageable.   

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