Friday, December 30, 2016

Count Down 2016 – CDC Opioid Prescribing Guidelines and Chronic Pain

2016 has provided many changes in the way pain is perceived, judged, and treated. Unfortunately, some changes have had dire consequences for those living with chronic pain.

The CDC Opioid Prescribing Guidelines

There is little doubt that the CDC opioid prescribing guidelines for primary physicians have affected Americans living with chronic pain.

As suspected by advocates, the CDC's opioid prescribing “guidelines” have been perceived by many as a CDC policy, when they are NOT. 

 “Policy’ is defined as a law, regulation, procedure, administrative action, incentive, or voluntary practice of governments and other institutions.”

In a Medscape article, New CDC Opioid Guideline: The Good, the Bad, the Ugly, Charles E. Argoff, MD dissects the CDC Opioid Prescribing Guidelines, asking many questions that would have been posed during the development of a CDC policy, had there been one. As Dr. Argoff suggests, there are some very good things about the guidelines. But, other important deliberations were not included. It is my opinion that the CDC made a grave error when they ignored their own policy process, which requires rigorous investigation, planning and implementation on public health issues.

Why does it matter?

There are drastic differences between a policy and a guideline. Look at the wording for the “Prescribing Opioids for Chronic Pain Workgroup (Opioid Guideline Workgroup)”, of which some people had an undisclosed conflict of interest. These folks had the liberty to handpick “evidence” to prove their own opinion, ignore concerns brought up by other workgroup members, and publish them without advanced notice for public comment, an action that left many to distrust the CDC and their agenda. Advocacy groups pushed back until the CDC reopened a comment period, but it became evident it was an exercise that would have no effect on the guidelines; they continued to  ignore the voices of all the people. 

So, we are left wondering why the CDC, a government agency that focuses on public health, wouldn't  follow their own policy development protocol and include all stakeholders. 

I doubt the CDC set out to harm so many, but their guidelines have. I hear the cries of abandoned patients kicked to the curb to suffer withdrawal without help. And, others who are being weaned only to have their pain return to catastrophic levels, because physicians have suddenly done an about face. I have read the stories of family members raising their voices to let people know their loved one took their own life because these guidelines have led to the denial of access to moral and ethical care. If you or someone you know has been harmed, please see  HELP - Guidelines for Pain Warriors.

Look Forward

Leaving 2016 in our review mirror, let’s look toward 2017 with hope. The guidelines have been met with great scrutiny. There is opportunity in adversity. I am grateful for Dr. Argoff and many other physicians and advocacy groups who speak up for patients and their care. 

In healing,,Celeste

Other reading you may find helpful:

"Adversity is only an obstacle if we fail to see opportunity."

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website:

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Monday, December 19, 2016

Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain This Winter

There is nothing charismatic about chronic pain regardless of its source. Pain and chronic illness are greedy and demanding. Either or both can consume our time, our relationships, and our function. Chronic pain and illness can rob us of our dignity if we let it. But, there are things we can do, perspectives we can make that prepare us for the untold side effects of living with daily pain and chronic invisible illness.

“Remember, no one can make you feel inferior
without your consent.”

~Eleanor Roosevelt

Day Twenty-three - Whole Heartedness

The winter season metaphorically offers time for our old thoughts and destructive behaviors to die off. The barren land of winter uses the season for rest, to lay sallow in preparation for the birth of spring. The books in the Broken Body, Wounded Spirit series allows us to go of old thoughts by offering  daily thought prompts, exercises, and words of inspiration, such as those in the above quote. Our readers are given tools to fight the ogre of doubt that plays on our fear, agony, loneliness, and resentment in the Winter Devotions edition.

Come with us as we walk the barren winter land, appreciating that it is necessary to rid ourselves of previous conceptions in preparation for the spring season of rebirth.

Read more about Broken Body, Wounded Spirit, Balancing the See-Saw of Chronic Pain: Winter Devotions by Celeste Cooper, RN and Jeff Miller, PhD on my website, Celeste Follow me on Facebook, Google+, Twitter, Pintrest, and Linked-In. Other resources include:

Available in paperback on Amazon and Barnes and Noble, and Kindle. Also available in Canada and the UK.

In healing,,Celeste

"Adversity is only an obstacle if we fail to see opportunity."  

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website:

Wednesday, December 14, 2016

Chronic Pain: Surviving an Addiction Misdiagnosis with Patti Young

Personal stories humanize the challenges we face as a society, and stories from people living with chronic pain are no exception. I have heard many accounts of what it is like—I have my own. But, do we truly understand, patient and provider, how labels like “opioid use disorder” contribute to our current pain care conundrum?

I want to personally thank Patti Allen-Young on behalf of over 100 million American’s living with chronic pain for sharing her story.

My Life With Chronic Pain After Being Misdiagnosed With Addiction
by Patti Young

I am a patient who lives with chronic pain from a lower back injury that resulted in two surgeries. My condition has led to a label many of us endure—chronic pain.

I understand it can be difficult for a healthcare provider to manage a patient with both chronic pain and a substance use disorder. But does that give them the right to mislabel or use terms they don’t understand, labels that compromise care?

I need to share my story.

Experiencing sudden severe eye pain and knowing the protocol as a nurse, I called ahead to emergency room (ER) to make sure an eye doctor was available. I never saw that doctor. Instead, I was seen by a physicians’ assistant (PA) who prescribed an antibiotic eye drop. My severe pain complaints were not only ignored the PA’s interaction changed after reviewing my medical record. Later I would recognize the uneasy feeling that something detrimental to me was about to unfold. I could have gone blind because of bias in the healthcare environment.

My next encounter with discrimination was when I sought help for severe groin and hip pain, eventually diagnosed as sacroiliac (SI) joint dysfunction from my initial lumbar fusion. I was laying on the ER gurney, my husband at my side. Once again, my extreme pain complaints were dismissed. But this time something bizarre happened. Three security guards descended on me and told me to get in my wheel chair and leave or they would pick me up, put me in it, and escort me out. I was a 59 year old, disabled woman and no threat to anyone. They must have the wrong person, I thought. My husband sat stunned beyond words. Now, I knew there was something in my medical record I needed to see.

How could this happen?

Because my care was being compromised, the investigation into that “red flag” began. What I found was that a new doctor I saw on referral mistakenly documented “history of addiction” in my medical record. I asked myself, “Did I have a dependency problem that no one was sharing with me?” I found no mention of any dependency problems in my records by my other healthcare providers. In fact, at the time I was still being prescribed pain medication. Why wouldn’t a doctor making such a judgment discuss this with me? Did he decide—not knowing me at all—I was misusing my pain medicines? Was it human error?

The Haunting

I understand that people do suffer with addiction, and I would hope those folks get appropriate care. But, a misdiagnosis, a misguided judgment, or a medical record error can affect a patient forever.

Soon after moving to a new state to escape harsh winter weather that aggravated my pain, I had to seek emergency care. You see, despite knowing primary care physicians were accepting new patients and my insurance, I had great difficulty finding one. That red flag, the label, continued to haunt me.

Physical Harm – Is that all there is?

I experienced physical ramifications from labeling, but it also caused me mental and emotional distress and problems relating to others. Even though I realize the label was unfounded, the sleight of hand unleashed more obstacles for me to overcome.

Ignored and mistreated in my times of real need, the hospital staff responsible for their role in having me removed from that emergency room demonstrated their anger by tone of voice, gestures, and curtness. I felt hopeless. It was a very dark time in my life that has become difficult to forget.

Stories like mine shouldn’t happen in a civilized world. As a nurse, I ask, “What is the treatment plan and bias for those who do live addiction or with chronic pain and addiction”? Do they “deserve” to be treated badly, judged, and denied access to the care they need? Isn’t there a problem when people living with chronic pain develop PTSD and anxiety because of their medical treatment? Is it any wonder I distrust the very physicians I have to go to for help? 

I am a person, not a label

Once a trusted fellow healthcare provider, a nurse for nearly 35 years, I no longer feel the camaraderie I once enjoyed. My reputation is important to my character; I am not a different person simply because I live with chronic pain, yet I have been mislabeled and treated harshly.

Educate – Do no harm

The medical community needs to be educated. I certainly have been. That’s why I wanted to share my story. There is a difference between physical dependence and addiction. Addiction, misuse, or opioid use disorder are not synonymous with needing an opioid to treat very real, documented pain conditions. A distinction and differentiation should be made by someone qualified.

Many medical professionals congratulated me for stopping my pain medication when I found other affective treatments. I thought they were crazy. For me, it was no mental feat, because I was not addicted, though the physical withdrawal was no party. I don’t have skin in this game now, but I still live with chronic pain and I can say without hesitation, it’s time to stop hurting and stigmatizing pain patients. It only makes their pain experience worse, their medical care neglectful, and can lead to serious mental health problems or even suicide.

Healthcare providers, make sure your diagnosis has merit. Refer your patients to someone qualified to document “their expert findings”. Have an honest conversation with your patient. Stop for a second and think about how documenting personal opinions can affect someone else’s life, health, and well-being. Join patients like me willing to share their story by becoming part of the solution. Don’t ignore your patient’s pain complaints, advocate for them.

Sincerely, Patti Young

“To create change, we must squarely face the reality of pain in our society, including both the helpful treatments and services that are currently available for people in pain and the ways that we, as a society, are falling short of giving people the help for their pain that they need."

Lynn Webster, MD, The Painful Truth

Editor’s remarks:

The patients I hear from are looking for hope. They feel mistreated, talked down to, and ridiculed; they are bullied into submission and sometimes torture. Perhaps we need better education for providers and patients on the difference between pain and addiction behaviors. Perhaps we can hold others accountable by sharing our stories. Most patients find being a change agent is empowering. So please, help us carry their stories to social platforms. We can make a difference for all those living with chronic pain.

If you feel you are being harmed, please review the ”Guidelines for Pain Warriors” and other helpful information at .

In healing,,Celeste
"Adversity is only an obstacle if we fail to see opportunity."  

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper, RN
Author—Patient—Freelance Writer at Health Central & ProHealth Advocate

Celeste’s Website:

Learn more about Celeste’s books at her website or find links here on Celeste's  blog. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.  

Celeste's Website

Celeste's Website
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