A PATIENT's VOICE – Life in Chronic Pain with Frank Elliot

Since the CDC Guidelines on Opioid Prescribing were published, I have been bombarded with requests for help. The number of contacts became too much for this one-person to handle individually. So, I have posted a FB Note, The Pain Advocate’s Corner: How to Raise Your Voice. You will find many links for contacting or interacting with federal and state legislators, medical associations, advocacy organizations, insurance commissioners, and more. Sharing your story is not only a cathartic experience, it is helpful to others, including patients and those who write policies that affect us as a patient community. Becoming involved in movements like No Longer Silent is empowering and a good anecdote for feelings of isolation.

Sit Awhile – Tell Me Your Story© Celeste’s Photography

Many thanks to Frank for sharing his story as a Google+ comment and allowing me to share it with you.

Frank Elliott’s Story

When I hear or read the reporting about the bad side of opioids, I cringe, Celeste. There is seldom any reporting on people like you and me. Many of us need something in addition to meditation, relaxation, pacing, non-opioid pain medicines, and medicines like Lyrica®, which provides pain relief for a small proportion of people and can have horrible side effects. Lyrica® gave me a terribly debilitating and chronic case of inflammatory lymphedema, which has led to me being bed bound and homebound for months at a time. Nothing even approaches the relief I get from 15 mg a day of methadone. My pain drops from an 8 or 9 level to a 2 or 3 level. I've reduced the methadone from 30 mg a day to 15 mg a day as my peripheral nerve damage gradually heals. In nine years, I haven’t had any problems with methadone. I remain very stable on a gently declining dose. Severe constipation is an issue, but I address that issue with daily use of Mirilax®.

I'm a diabetic, have severe, persistent asthma, have chronic pain from nerve damage, a hypothyroid condition, and I am depressed from time to time because it can be difficult to live with a long list of chronic illnesses. If my burning, frying, electric shock kind of pain is under good control, my life can be very active. I don't know how I would be able to handle things or cope if my pain was out of control again. When it was, about ten years ago, I thought passing away might be a viable option. That tells you something about how overwhelming the pain was.

Thankfully, I am much better now and my chronic illnesses are not endangering my life. I am fortunate to have access to a wonderful university teaching hospital pain practice. Still, I am very concerned, like you, that the stories of people like us aren’t being heard. I don't like having to take methadone. I have to be very careful, chart every dose, and make sure I don’t make a mistake. Still, after 9 years with the hospital pain center, the doctors and nurse practitioners trust me. I'm very reliable and steady. My practitioner says, "Frank, if I could only bottle you!" She knows we've tried everything else gradually and only methadone controls my neuropathic pain from peripheral neuropathy.

I think a good place for me to start is with my two senators from my state. I bet they haven't heard the stories of the millions of people who use opioids because they work effectively to control our pain. We are not addicts or drug abusers. We use opioid pain relieving medicines only to control our unrelenting and unmanageable pain. Thank you for listening, Celeste.

Frank’s Afterthought

I enjoy your pieces on lymphatic drainage system massage. My inflammatory lymphedema is in a flare, so it’s time for monthly drainage massages, what my medicine doctor calls Frank's tune-ups. Eight to ten sessions and doing the things they teach me will allow me to regain control. Working together, we've found patterns of my disease and identified warning signs so we can intervene in a timely fashion. I have made a great deal of progress because of the people at the pain clinic. It’s encouraging to me. The teamwork and communication between patients and my wise providers is a wonderful thing.

Celeste’s Note

I am not a journalist; I am a registered nurse and I am a fellow person living with chronic pain. As lead author of five books on “integrative” care, I believe we should have all tools available to us, and for some that includes opioids or state legalized medical cannabis. Access to any treatment that improves our function in any direction, physical, mental, emotional, or spiritual is the right one. 

Have you shared your story?

Additional Reading:

The Pain Advocate’s Corner: How to Raise Your Voice

Lymphatic Massage, Clogged Drains and Fibromyalgia Pain

No Longer Silent – I hope you will join us.

 In healing,,Celeste

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://CelesteCooper.com

“Listen closely; I hear the sweet sound of existence.”

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Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others.

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

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 http://CelesteCooper.com .

In healing,,Celeste

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

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Celeste Cooper, RN

Author—Patient—Freelance Writer at Health Central & ProHealth —Advocate

Celeste’s Website: http://CelesteCooper.com

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.