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.

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“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.