By Pat Anson, PNN Editor

Nine out of ten pain patients say their pain levels and quality of life have grown worse since the Centers for Disease Control and Prevention released its 2016 opioid guideline, according to a large new survey by Pain News Network. Over half say they were taken off opioids or tapered to a lower dose against their wishes.

Nearly 4,200 people in the U.S. participated in the online survey, including 3,926 who identified themselves as chronic, acute or intractable pain patients.

The CDC’s controversial guideline discourages doctors from prescribing opioids, particularly in doses that exceed 90 morphine milligram equivalents (MME) per day. Although voluntary and only intended for primary care physicians, the guideline has had a sweeping effect on virtually every aspect of pain management, with many of its recommendations adopted as the standard of care by doctors, pharmacies, insurers, regulators and law enforcement.

Asked what has happened to their opioid prescriptions since the CDC guideline was released, one in four patients said they are no longer prescribed opioids and nearly 56% said they are getting a lower dose.

“These CDC rules are cruel and abusive to patients like myself. I never have even 5 minutes without debilitating pain now because I’m not allowed to have the dosage I need to be comfortable. I do cry a lot and pray that God will end my suffering,” said one patient.

“My pain meds have been reduced by about 70% and I am in much more pain now. It is hard for me to eat and I have lost about 30 pounds and severely underweight,” said another.

“I have had no quality of life since my pain specialist took me off the meds 5 years ago. Now my life consists of sitting in a recliner all day long, with nothing to look forward to except weight gain,” a patient wrote.

Opioid prescriptions were declining before the CDC guideline was released and now stand at their lowest level in 20 years. But reduced prescribing has had negligible impact on the overdose crisis – drug deaths are at record levels – and it’s come at significant cost to patients. Over 92% say their pain levels and quality of life have grown significantly worse or somewhat worse in the last five years.

“It has made my life hell. I can barely stand or walk. Every day is an endurance test. It is clear how much opiates worked for me,” a patient wrote.

“The effects on my physical, mental health and quality of life have been devastating. I can't take care of my home, I can't regularly do grocery shopping, attend my kids extra curricular events or have any form of family fun without immense suffering,” said another patient.

“These guidelines are destroying the lives of chronic pain patients! We didn't do anything to deserve the loss or great reduction of our medications, and we are losing quality of life and the ability to function,” a patient said.

“It’s astounding that in a theoretically free country that people who have committed no crime are sentenced to life sentences of intolerable pain that prevents us from working, driving any distance, visiting friends or family and being forced to expend funds and effort to see our pain doctor monthly to hopefully have our prescription renewed,” said another patient.

Many patients report that effective pain treatment is increasingly hard to find:

• 59% were taken off opioids or tapered to a lower dose against their wishes

• 42% had trouble getting an opioid prescription filled at a pharmacy

• 36% were unable to find a doctor to treat their pain

• 29% were abandoned or discharged by a doctor

• 27% had a doctor who stopped prescribing opioids

• 19% had a doctor close their practice or retire unexpectedly

• 13% had a doctor investigated by DEA, law enforcement or state medical board

“My life has been significantly changed for the worst since my doctor was unjustly arrested, and the government continues to delay his trial. I have complicated medical issues and can find no one to prescribe what I need,” a patient said.

“When the DEA raided my physiatrist's office and suspended his DEA and medical licenses, pending the outcome of their B.S. investigation, and I began to search for a new one, I learned that all of my doctor's patients (myself included) had been blacklisted by most of the remaining physiatrists and anesthesiologists or pain specialists in the state! Whenever a receptionist or nurse asked me who my previous physician was and I answered them, the phone call basically ended right there,” another patient wrote.

“This entire mess has caused massive suffering to chronic pain patients, worsening health, dangerous side effects from being forced to take other dangerous medications not made to treat pain, and numerous suicides,” another patient said. “Good doctors are now terrified of being wrongly targeted by the DEA, resulting in massive suffering and diminished patient care, and even doctors offices closing entirely.”

‘Please Give Me My Life Back’

Only about two percent of patients said they’ve found better alternatives to opioids. With effective pain care difficult to obtain, some patients are having suicidal thoughts or using illicit drugs.

• 35% have considered or attempted suicide due to poorly treat pain

• 10% have obtained prescription opioids from family, friends or the black market

• 9% have used illegal drugs for pain relief

“As a pain patient of over two decades I never had a problem until the CDC guidelines came out, since then I've had to see a psychiatrist, pain psychologist, endure nasty forced tapering, wrote suicide notes and caught myself walking out the back door to kill myself,” a patient said. “When will these losers understand nobody in their right mind wants to take opioids? The only reason pain patients take opioids is because we don't have anything else that works.”

“I started going to the methadone clinic. I couldn't find a doctor for my pain meds nor my nerve meds. I started using heroin as did my longtime girlfriend who fatally overdosed in 2019 amongst many other friends and family members and the methadone is not working for my pain,” another patient said.

“My daughter is 28 and has severe pain. The last two pain specialists she had quit due to the guidelines and now she can't find anyone who will help her. She is very suicidal and I know I will not have her much longer as she is extremely depressed,” a mother wrote. “The CDC guidelines will most likely kill my daughter. She has already attempted suicide.”

“I blame our governmental agencies for my suffering. I have thought about suicide and yet I'm a board member of our local Suicide Prevention Council. And as I sit here promoting wellness and suicide prevention, I can't help the physical and emotional pain that is ripping out my soul. It really pisses me off because I know my life doesn't have to be this way,” said another pain patient. ”Please give me my life back where I was able to function with my pain medicine.”

“The CDC has ruined my life,” said a patient who has had five back surgeries and needs a hip replacement. “Most of us in chronic pain contemplate committing suicide all the time. We are not addicts, we aren't getting high, we are trying to survive and be parents or productive members of society.”

Ironically, the risk of addiction and overdose appears to be low in the pain community. Only 8% of patients who participated in our survey said they’ve been given a referral or medication for addiction treatment. And less than one percent (0.55%) have suffered — and survived — an opioid overdose.

(PNN’s survey was conducted online and through social media from March 15 to April 17. A total of 4,185 people in the United States participated, including 3,926 who identified themselves as chronic, acute or intractable pain patients; 92 doctors or healthcare providers; and 167 people who said they were a caretaker, spouse, loved one or friend of a patient. Thanks to everyone who participated in this valuable survey. To see the full survey findings, click here.)