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"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Friday, April 2, 2021

The Pain Community Needs More Unity and Awareness — Pain News Network

The Pain Community Needs More Unity and Awareness — Pain News Network: By Carol Levy, PNN Columnist My column last month, “It’s Time for People in Pain to Be Heard,” received a lot of comments on PNN and in social media. Most often the writer wrote about why or how they had been hurt by the implementation of the CDC opioid guideline. Several people commented that

Friday, March 5, 2021

It’s Time for People in Pain To Be Heard

(copied from I just had my second “there's an issue with filling your codeine prescription” incident. I have been on codeine, on and off, for over 30 years. Initially, I was allowed refills. When that was no longer permitted, my doctor gave me a new prescription, each and every month, for 120 pills. When my trigeminal neuralgia pain became somewhat better as a result of various surgeries, I often took only 1 or 2 pills per day. I am now about 90% housebound. Part of it is due to Covid, but mostly it’s because I do not want to go out and make the baseline pain worse. As a result, some days I take no codeine at all. My last prescription was for 120 pills. It was a month’s supply that lasted for 9 months. The first incident was last year, when my pain management doctor decided, without discussing it with me, that he was no longer writing scripts for 120 codeine pills a month. Instead, he changed it to 10 pills a month. I was told he didn’t like me having extra pills, a nonsensical excuse as I had no history of giving them away or taking too many. Prescriptions for 120 pills just made it easier for everyone, including the insurance company, since they would be paying less for fewer doctor appointments. Fortunately, I was able to go to my family doctor, who had no problem writing for 120 pills. They trusted me there, knowing I would not abuse them. But when I took the script to the pharmacy, I was told, “We can only fill a 7-day supply per your insurance company.” The worst part about that was not that I would have to repeatedly go back to the pharmacy, but that the cost for each 7-day supply was much more for me out-of-pocket than if they just filled the whole prescription at once. My Physician Assistant called the insurance company to ask for a pre-authorization. This would allow the pharmacy to fill the entire amount at one time. They immediately allowed it for the next 12 months, which seemed odd. If they think I should only be getting a 7-day supply, then why allow the whole script to be filled for an entire year? Either I am untrustworthy or I'm not. I am lucky. I don’t rely on daily opioids to get me out of bed, go to the store or be able to work. So many of us have no other option but to take them. My annoyance is tame compared to what other patients go through, who have been unable to get what they need due to restrictions on prescribing. Physicians for Responsible Opioid Prescribing (PROP) recently sent a letter to the AMA saying the organization shouldn’t be calling for changes in the CDC opioid guideline, even though far more people are dying from street drugs than prescription opioids. “Medically prescribed opioids remain a common gateway to illicit opioid use and are themselves frequent causes of opioid addiction and overdose, even if illicit opioids currently cause the greater number of deaths,” PROP said. PROP founder Dr. Andrew Kolodny even said that prescriptions “still have a very long way to go” and should be reduced even further. PROP’s reach is loud and strong. We complain so much to each other, patient support groups, Twitter and other social media about how awful this is, how unfair and inhumane. A number of people have started online petitions to send to the FDA or CDC, asking that the guidelines be changed so they stop hurting chronic pain patients. Many say, “This is a great idea.” Yet few actually sign. Nothing will change if we don’t band together and make our voices heard. The call keeps going out, “Something must be done!” But too often the answer is, “Oh yes, somebody must do something. But I'm too busy.” Whispering in the wind won’t help. It is long past time for us to become a true force, with a voice that is louder and stronger than PROP’s.

Sunday, January 31, 2021

Our Dirty Words A Pained Life: Our Dirty Words January 30, 2021 By Carol Levy, PNN Columnist You may remember the late comedian George Carlin’s monologue: “Seven Words You Can Never Say on Television." I won’t list them here, but they are “dirty” words better off not being said, even off television. I thought about Carlin’s list the other day when I realized there were some words that I use all the time. They’re not dirty words, but for many of us who have chronic pain, they’re words that often prove to be hurtful. Words that we need to let go of. For example, a major portion of my trigeminal neuralgia pain comes from eye usage and eye movement. I love to read and whenever I pick up a book I know it’ll cause pain, but I refuse to let the pain take this from me. As I read, the pain starts to grow and becomes demanding: “Stop! STOP NOW!” But the plot is thickening and the killer will be soon be unmasked (I hope) in the next few paragraphs, so I keep reading. And the pain keeps growing. The voice in my head yells: “You have to stop. You have to stop NOW!” The other voice, the one that refuses to accept my limitations, answers: “Just one more page. Just one more paragraph. Just one more sentence.” I can listen to the sensible voice and stop now. Or I can read just a little more. And be in tremendous pain. Most of the time the “just” voice wins. It is a word that is anathema to controlling the level of pain. But I let it win anyway. Shoulda Woulda Coulda “Should” is another word that causes us to do so many things we know we shouldn't: “I should make the bed” or “I should make the kids dinner even though the pain is so bad.” That’s often followed by the self-flagellating counterpoint “I shouldn't have made the bed or read that book. I knew it would make the pain worse.” “Could” is another one. I find this word to be a favorite of rueful thoughts in the “coulda woulda shoulda” variety. It is also a favorite of others who ironically think it is a compliment: “You could have been a doctor, lawyer or teacher.” Yes, that’s a nice thing to say. It is usually an effort to compliment us, our intelligence or intrinsic worth. And it is so hurtful. Yes, I know I could have been those things. I may have even tried, but the chronic pain took those options away. Pretending or refusing to accept our limitations, and knowing when to say when, is often very hard to do. Because we want so much to do more than what the pain allows us to do. I am sure there are many other words that describe our plight, but in thinking about it they all seem to come under one umbrella word: Denial. It is hard to do, but we need to learn to accept what we work so hard to deny. When it comes to deciding what we can and cannot do, the pain is king.

Wednesday, November 11, 2020

Where Is the Hurry to Help People With Chronic Pain? — Pain News Network

Where Is the Hurry to Help People With Chronic Pain? — Pain News Network: By Carol Levy, PNN Columnist Why is the United States and the rest of the world in such a hurry to get a vaccine against Covid-19? Easy to answer: The virus is a killer. As of the writing of this column, the number of American deaths stands at over 237,000 and is rising daily. The number of infec

Friday, October 2, 2020

A Different Perspective on Disbelief — Pain News Network

A Different Perspective on Disbelief — Pain News Network: By Carol Levy, PNN Columnist I was watching a 2009 episode of Law and Order . The plot line revolved around a fetus who had Ehlers-Danlos syndrome (EDS). They talked about the trials the fetus would face if born, because he would have “fragile” skin that could tear at the slightest touch. Neve

Thursday, September 3, 2020

A Pained Life: Don’t Throw Out the Bathwater — Pain News Network

A Pained Life: Don’t Throw Out the Bathwater — Pain News Network: By Carol Levy, PNN Columnist In 1976, my trigeminal neuralgia started. In those days, the environment regarding chronic pain was very different. My doctor had only one agenda: He wanted to stop or reduce my constant debilitating and disabling pain. He couldn’t cure me, so he ordered opioid pain m

Monday, August 3, 2020

What If You Can’t Wear a Face Mask? — Pain News Network

What If You Can’t Wear a Face Mask? — Pain News Network: By Carol Levy, PNN Columnist Of all the possible repercussions of trigeminal neuralgia -- all the things it keeps me from doing because of the pain -- I never thought it could make me a possible danger to others. But suddenly I am. Because I cannot wear a face mask. Because of trigeminal neuralgi