How Pain Patients Feel About the Opioid Crisis

By Pat Anson, PNN Editor

We received an overwhelming response from readers to Diana’s Franklin guest column on how the opioid crisis has affected her. Diana has suffered from scoliosis since she was a child and now has degenerative disc disease. For many years oxycodone helped Diana manage her chronic back pain, but she can no longer get it.

Diana considers herself collateral damage of a crisis she had nothing to do with.

“The government stopped allowing my doctor to prescribe any opioids, leaving many of his patients, including myself, without any pain medication at all,” Diana wrote.

“I can hardly get up to go across the room without help and every step causes extreme pain. I can't think straight and wind up exhausted because every ounce of energy I have goes to fighting the pain.”

Diana’s story hit home with hundreds of readers who left comments or sent us emails.

“Just recently my doctor said that he was gonna have to stop prescribing me my opioid pain medication,” wrote Jeffrey Ticich, who suffers from scoliosis, stenosis, a herniated disc, and recently had his right leg amputated.

“When my doctor takes my opioid pain medication away from me, I will start looking for a burial plot. I have suffered most of my life with severe chronic acute pain and I will not suffer anymore. There has got to be a solution for patients that are suffering and not abusing their opiate pain medication.”

“I am a disabled law enforcement officer. I was hurt in a car crash years ago responding to a rape in progress. The only way I've had any quality of life is with the pain medication,” wrote a man who didn’t want his name used. “Life has been really rough since (they) restricted pain medication. Also think of all the injured veterans. What a way to say thanks for your service.”

“I've suffered with neuropathy for almost 15 years. It's very painful, especially in my lower legs. I find it difficult to even walk to the mailbox and back,” said Leslie Rowland, who is 70. “I too am a case of collateral damage when it comes to pain meds. I've loved to fish all my life but had to give it up this year due to the pain. Please, someone with a voice needs to be heard for people like me. All I want is not to be in pain 24/7 and to have a decent quality of life.”

CDC Guideline Unchanged

Many pain patients thought their voices were finally being heard last April, when CDC Director Robert Redfield, MD, acknowledged that many insurers, pharmacies, states and practitioners were implementing the agency’s 2016 opioid guideline as a mandatory policy.

“The Guideline does not endorse mandated or abrupt dose reduction or discontinuation, as these actions can result in patient harm. The Guideline includes recommendations for clinicians to work with patients to taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy,” said Redfield.

“CDC is working diligently to evaluate the impact of the Guideline and clarify its recommendations to help reduce unintended harms.”

Five months later, not a word of the CDC guideline has changed. And many doctors, insurers and pharmacies are still reducing opioid dosages or cutting off patients.   

“My pain doctor keeps reducing my pain medicine dose to the point that it's almost ineffective, thanks to our government's unrealistic guidelines. And instead of going after the real culprits of the problem (the dealers), they're putting the blame on the doctors,” wrote Richard Parrish. “Those of us who really need help are paying the price for our inept government's prescribing guidelines. THIS HAS GOT TO STOP!”

“I have been in pain since last October from neck pain that travels to the back of my ear from whiplash,” wrote Lois Henkin. “I have been to all kinds of doctors, had physical therapy, had facet joint shots, cervical steroid shots, etc. with no change in the pain.

“I was put on gabapentin for the pain, with no results. I switched to Tramadol, which works, but now because of the opioid crisis, I am not even given 1 pill a day. This is not fair to people that have severe pain. Just limit the meds to the drug addicts.”

Many readers, like Debra Christian, said they felt abandoned and misunderstood.

“Unless you live in chronic pain, then you don't understand it, nor do you know what it does to a person and how it changes the person they were,” Christian wrote. “We don't have lives. We’re just existing.

“This is a problem. This is a travesty. This is a financial burden. And I am an American who wants to still work, but I can’t. It will be up to me to fight with whatever strength I have left, if I want any quality from my life that I and so many others deserve.”

In PNN’s recent survey of nearly 6,000 patients, over 85 percent said the guideline has made their pain and quality of life worse. Nearly half say they have considered suicide because their pain is poorly treated.

When Will They Start Listening to Pain Patients?

By Ann Marie Gaudon, PNN Columnist

It’s often suggested that pain patients and their advocates write or call elected officials, government regulators and physicians’ organizations to protest the sorry state of pain care in the U.S. and Canada. Many of us do just that and wind up feeling ignored or dismissed.

I have now corresponded with two different physicians at the College of Physicians and Surgeons of Ontario (CPSO), only to be passed onto their “Director of Strategy” (a fancy pants title no less).

The CPSO is the body which governs physicians in Ontario and it has rigidly enforced Canada’s 2017 guideline for opioids. They have monitored patient files, hauled over 80 doctors in to investigate “overprescribing” and basically terrorized doctors for prescribing opioids.

The doctors in turn deny and restrict opioid medications to their patients out of fear for losing their licenses.

I have asked the CPSO these questions:

• What evidence do you have to indicate the long-term use of opioids increases pain?
• Why is the chronic pain population being penalized for overdose deaths due to illicit street drugs?
• Why are you not listening to chronic pain researchers, physicians and patients?
• Does a decrease in opioid prescriptions and an increase in overdose deaths suggest a statistically significant relationship?
• How is it ever acceptable for pain patients to be dictated to by non-pain specialists?

I have provided no less than 27 references to show that there was never a connection between chronic pain patients and those dying from overdoses. However, no one has provided me with answers to my questions -- not even fancy pants.  In fact, the CPSO continues to disseminate disingenuous information about pain management, opioids, addiction and overdoses.

And remember folks, these are the people who took an oath to care for the suffering. That would include all of us pain patients -- or one would think. To put out genuine effort and have nothing but deaf ears returned is sickening -- pun intended.

Health Canada also hasn’t answered my questions and continues to make baseless claims such as "high rates of opioid prescriptions are a contributing factor to Canada's opioid crisis." Predictably, when the media hears that, they rush to publish the news that Health Canada plans to “severely restrict marketing of opioids” -- as if that will have any effect on those dying from overdoses. It will not. The non-pained public laps it up.

I also wrote to my representatives in Parliament. MPP Michael Harris did not respond in any way. MP Marwan Tabbara responded with a boilerplate letter about the opioid crisis, yet when I asked for a purposeful response, none was forthcoming.

Dr. Helena Jaczek, Ontario’s Minister of Health, did not address my concerns either. A representative of Health Quality Ontario did respond to me quickly, yet when I replied with additional concerns, I had no further correspondence.

I’m aware that our friends in the U.S. are certainly not being heard either. Scores of you sent letters and emails commenting on the open letter that desperate pain sufferer Charles Malinowski sent to California Sen. Kamala Harris, who replied with a boilerplate letter filled with hype and hysteria about opioids and how more funding was needed to treat addiction.

Another example is when over 100 comments were submitted to the DEA asking it not to cut the supply of opioid medication because it could lead to shortages and worsen the quality of pain care. The DEA’s response? The agency said the comments dealt with medical issues that were “outside of the scope” of its order. Then it cut the supply anyway.

A genuine letter is sent and verbal diarrhea is returned. I can assure you that this phenomenon is not just “Made in America.” 

If you’ve written or tried to be heard and have gotten nowhere, that is no reason to stop trying to hold governments and physician groups accountable for their shameful disregard for pain patients. We have just had a shakeup in Ontario’s government, so it's all new players now. Will they help? I intend to find out.

Who is with me? More than ever pain patients and advocates need to stick together, focus and move toward effective change. Don’t make quitting an option. If you live in Canada and are a pain patient having unethical treatment forced upon you, please join us at this Facebook page. 

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 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

One Is the Loneliest Number

By Ann Marie Gaudon, PNN Columnist

Part of what makes pain "painful" is the feeling of being misunderstood and the feeling of aloneness.

"Nothing is quite so isolating, as the knowledge that when one hurts, nobody else feels the pain,” Robert Murphy wrote in his memoir, “The Body Silent: The Different World of the Disabled.”

When you combine a sufferer who sees only pain with someone who can't see it at all, a barrier often springs between the two.  Pain causes this barrier because it inverts our typical perspective. No longer able to reach out to others for work or leisure, pain patients turn inward and life becomes about self-protection. Something is wrong inside of us, so we must tend to it and ensure it doesn't get any worse. This is an evolutionary response for survival; it’s instinctive and quite normal under these circumstances.

Once patients are constrained in their daily activities, a large part of their social world and the emotional health that depends on it can quickly deteriorate. Relationships are arguably the largest part of what makes life worth living.  In contemporary Western society, our self-confidence and identity arise from social interactions.

But as chronic pain sufferers’ lives become more restricted and limited, they frequently experience an erosion of their former self-image without the simultaneous development of a new one.

For example, I have heard: “I was a nurse, a mother, a wife, a friend, a daughter, and a sister, but now all of that is gone and I am alone in a cage with my pain.”

When isolated and in pain, our mind can become our worst enemy. The collapse of one’s social world can result in feelings of anxiety, emptiness, loneliness, anger, sadness, grief, guilt and low self-worth.

All of this psychological stress (aka “dirty pain”) is a response to your physical pain (aka “clean pain”).

Stress is a complex cascade of physical and biochemical responses to strong emotional stimuli. Emotions are electrical, chemical and hormonal discharges of the human nervous system. When not processed in a healthy manner, they can generate or increase pain and illness.

People can and do help themselves. Some join groups. If possible, join a walking group for exercise. If you don’t like walking, join another. The point is not so much what the group is doing, but rather that you are in a social situation.

Online forums are another way that people connect, especially if one is mainly housebound. Online communication can help you feel not so alone with your pain.

Maybe it’s possible for you to open up your home to low-maintenance company. Host a popcorn and movie night, or it could be cards or board games. You do the choosing, including when it begins and ends. Start with a single and simple event to prevent over-exertion and see where it leads.

Remember, what’s important is that you are building and maintaining relationships. To the extent that it’s possible, stick with those who support you. This could mean family, friends or even a support group for your condition, which can be a platform to form meaningful relationships with people who understand you. By listening to each other, you both know that you are heard and that you are not alone.

Some folks make their pain more communicable and thus sharable through pictures, artwork or expressive writing. Oftentimes this helps to bring barriers down to help others understand how you are feeling. There are no rules, you choose your form of expression.

Finally, realize that it is not your fault that you live in a pained body. Adding self-blame to your list of challenges will only make things worse for yourself. Learn to ask for help when you need it. Asking for help is never a weakness but is an act of self-compassion. I work extensively with clients on self-compassion, most of whom are quite naïve about it. If beating yourself up were the way to better health, wouldn’t you be the healthiest person on the planet by now?

I also work with people to get realistic about their life and expectations. What can stay? What can go gracefully to make room for new ways of being?

People aren’t broken, they’re just stuck. It’s not always easy, but with new learning, adaptations and support, people also become unstuck.

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 33 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.