What Pain Patients Say About CDC Opioid Guideline
/By Pat Anson, PNN Editor
Are there better and safer alternatives than opioids for chronic pain?
That’s one of the questions posed in PNN’s latest survey on the CDC’s opioid prescribing guideline. The guideline states that “no evidence shows a long-term benefit of opioids” and recommends physical therapy, cognitive behavioral therapy, massage and a number of non-opioid medications as safer and more effective treatments.
People in pain disagree. Nearly 7 out of 10 patients tell us there are no better or safer treatments for chronic pain than opioids.
But the numbers tell only part of the story. Most of the 5,885 patients who responded to our survey left detailed comments on how the CDC guideline has affected them.
Many have lost access to opioid medications after using them responsibly for years. They feel abandoned by the healthcare system.
Some are bedridden due to physical pain, but also live with the emotional suffering that comes from losing jobs, financial security, marriages and friends.
Many are suicidal. And a few have turned to street drugs.
ARE THERE BETTER AND SAFER ALTERNATIVES THAN OPIOIDS FOR CHRONIC PAIN?
We thought the comments below were important for you to see. They are representative of the thousands that we received. The comments are edited for clarity and to protect the patients’ identities.
‘I Have Lost So Much’
“I am now only able to use Tylenol for my multiple, severe chronic pain conditions. In two years, I have had to quit working, I am homebound, mostly bedridden. I am severely depressed, think about suicide daily as my only remaining option for pain management. I have severe insomnia due to the pain. I have developed severe hypertension and cardiac arrhythmia due to the constant severe pain and twice have suffered sudden cardiac arrest. The cardiologist said there is no underlying cardiac conditions, it is due to long term, unmanaged, severe pain.”
“I have been diagnosed with over 30 different conditions and a rare muscular disease. I spent thousands on doctors and natural treatments. Now, I have to suffer until I die. I have missed out on so much and lost so much. In bankruptcy, lost my business, could not go to Thanksgiving or Christmas, but the worst was I could not go to my daughter’s wedding. My life has become PAIN and my bed. As Americans we are supposed to have freedom. The right to choose what’s best for our pain. Each individual is different. The government should not choose what medication we should not take or how much.”
“You have no idea what it feels like to hurt, every single day. To be accused of being a drug addict for needing opioids. I have tried physical therapy. I have tried essential oils and Epsom salt baths. I have tried acupuncture and going to a chiropractor. I have tried every single alternative, but nothing helps the debilitating bone pain. I think of suicide, often. The opioids don't even get us high, it barely helps with the pain. At least with them, we can lead somewhat of a life. Right now I can barely work, let alone live. Your guidelines help no one but yourselves. People will always find a way to abuse something. But you guidelines are not hurting them. They are hurting us. You, are hurting us.”
“People with chronic/intractable pain just want to have some form of quality life. We want to live our lives. We want to be able to work, run errands like grocery shopping, clean our homes, cook food and take care of our families. I don't mention a social life as that is even difficult with good pain management. These guidelines are stripping people of their dignity, self worth and will to live, not to forget the shame and humiliation for needing narcotic pain medication in order to live.”
‘American Genocide’
"I am ashamed that my chosen career in Public Health has actively created a campaign based on false data. The fact that the ‘prescription’ drug epidemic was based on both the legal and illegal drug statistics was openly stated at every public health presentation I attended. That more accurate breakdowns have now been published has not altered the campaign, since grant monies have been awarded to organizations based on the inaccurate info, and those organizations must follow-through with the original requirements to get their money. Although they knew that data on suicides and the impact on pain patient quality of life would need to be measured, information systems to gather this information were not put into place.”
“A prescription opioid was the only medication that worked for me. I went through every non-narcotic drug before my doctor would even prescribe opioids. These guidelines have made doctors scared to write pain med prescriptions. Never in my life did I think I would live in a country that has legalized the torture of millions of American citizens by withholding necessary pain medication. This is beginning to look like the start of an American genocide of chronic pain/ill people.”
“I believe everyone has a right to be pain free. Every person has a different pain tolerance and to deny them medication for their pain should be absolutely illegal. People who are denied pain medication WILL find another way to handle their pain, and WILL be more likely to overdose and possibly die. Denying prescription pain medication will not stop people from finding it somewhere else, it will only increase their desperation to find another way to get it.”
I'm scared. I am a senior citizen. I cannot afford to go on like this. I am now afraid to see a physician because I am using Heroin for pain. I do not have a addictive personality. It is the only substance I use and only enough to barely function. I am frightened. I am ashamed. The one thing the CDC was attempting to halt has sent numerous pain patients down the road of underpasses and scary encounters to try and keep functioning as we used to before we were treated like addicts.”
“I have lost good friends because of the CDC guidelines. I have had 4 friends commit suicide because they could not deal with their day to day pain levels. I had a friend who broke his ankle bad enough that the bone was sticking out and he had to have surgery and they told him to take Advil and Tylenol afterwards. This is starting to be barbaric and inhumane.”
‘Living on Borrowed Time’
“I have been fortunate. My doctor continues to treat me, prescribe my meds, and help when there is a problem getting prescriptions filled. However, many of my friends have had problems ranging from doctors discharging them to pharmacists refusing to fill their prescriptions and more. One of my friends committed suicide when her pain meds were taken from her and she could no longer live with her pain. I feel so fortunate that I'm not having these problems, but then I wonder if I'm living on borrowed time.”
“My spine specialist informed me one year ago he would no longer be doing pain management due to the DEA. I have not been able to find another pain doctor. I am 55 years old. I spend 75% of my days in bed suffering. Even taking a shower puts me in tears. My house is a mess. I only go to the grocery store and my primary care provider when I have to. I have had multiple injections in my back, have tried every OTC med but nothing helps. When I was on opioids I passed my urine screens, my medication was never off count. I took them as prescribed. WHY AM I BEING NEGLECTED? DON'T I HAVE THE RIGHT TO BE TREATED FOR MY PAIN?”
“I have chronic pain due to multiple spine surgeries and fibromyalgia. I am on Medicaid and unable to work. I was on the same dose of opioids through a pain management physician for over 10 years with no issues whatsoever. I was able to work, raise my children (single mom) and have a life. I now have been cut back so far that I have to choose whether or not I want a good night’s sleep. The CDC guidelines have completely left the chronic pain community out to dry.”
‘Doctors Have a Responsibility’
“Please please please tell doctors they have a responsibility to provide pain medication to patients whose lives are being destroyed by chronic pain. I've lost everything because I got hurt at work. I used to run marathons and triathlons. Now my my blood pressure has skyrocketed, I gained 30 pounds, I lost my independence, I have no social life, I lost my sex life, and as a result of all these things I finally lost my wife of ten years. The guidelines needs to emphasize the need for people like me to have access to pain meds because so far, every doctor I have come into contact with since my injury has ignored that part of the guidelines. If you want to see a doctor's eyes glaze over and watch them stop listening to you, just mention pain medication.”
“My doctor was placed under investigation by the DEA for overprescribing. His practice was for high risk pain patients (many receiving end of life care), so he was red-flagged for a high volume of opioid Rx’s. As a result multiple chain pharmacies refuse to fill his scripts, Medicare & Medicaid patients were dropped with only 30 days notice, and he had to start tapering all other patients no matter our diagnosis. My insurance has refused to reimburse my prescriptions and half my disability check now goes to pay for them. I have no quality of life, it hurts to do everything, even basic self-care. I was openly mocked by doctor at a recent visit to the emergency room when I said I had a pain level of 7. He told me I wouldn’t get my fix from him. I had fractured my back in a rollover car accident.”
“Four years ago I was diagnosed with a B cell Lymphoma cancer. At that time my cancer doc prescribed pain meds for the broken vertebrae the cancer caused and the pain that the chemo caused. I came out of remission recently and started another round of treatment. My cancer doctor will no longer prescribe pain meds for me because I now see a pain doctor. The pain doctor doesn't understand the new cancer drug I'm on and that the side effects of this drug are pain, so he is very reluctant to manage my cancer pain. Many days I wonder if it would just be better to let the cancer take its course than to be scrutinized and treated like a criminal.”
“I am 88 years old and the dosage of medication I was given before these guidelines went into effect gave me a decent quality of life and I was able to endure the severe chronic pain I have had for years. I am now in a nursing home with a 38-year-old doctor who refuses to treat my pain. I feel helpless and fear I am going to remain in this nursing home much longer than I would like. I am also angry, in pain and have become depressed due to my situation. I have thought of suicide, often. I recall our lawmakers and others stating they did not want to do anything to keep the elderly from suffering due to these changes. I am here to tell you that they missed that goal by a long shot. As an elderly man, I should have the right to take what I need to live out my last bit of time on this earth as comfortable as possible. These guidelines have made that impossible.”
For a breakdown of some of the key findings from our survey, click here. To see what doctors and other healthcare providers are saying about the guideline, click here.
