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.  

The Patient’s Playbook: Find the “No Mistake Zone” – A Chronic Illness Blogger’s Review

"I have been given this product as part of a product review through the  Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. "

As a retired registered nurse, educator, and author of self-help books for my fellow pain warriors, I am thrilled to say that fellow author, Leslie D. Michelson, has done the patient community a great service by giving us “The Patient’s Playbook: How to Save Your Life and the Lives of Those You Love”.

Aesthetically appealing, easy to understand attorney, Leslie Michelson, expresses relatable accounts of patient experiences, bringing it home to us as readers and patients. Using his 30 plus years of experience in the healthcare arena, he gives us “what to do’s” for nearly all healthcare decisions. We find tips for finding confidence and courage; asking questions; choosing the right doctor; working through the logistics of access, insurance, and cost; exercising patient rights; developing a support team; carrying your entire health history with you; utilizing resources, and much more.

The patient stories allow us to make objective assessments and catalog them in the file of “things to remember before, or when, it happens to me”, because in today’s fragmented and rushed healthcare environment bad things can happen. As the author suggests, hasty judgments, whether from the provider or the patient, increase the likelihood of mistakes, complications, unnecessary interventions, inappropriate referrals and other unwarranted occurrences.

I recently experienced the fall out of hastened, fragmented care. My rheumatologist became my advocate and ordered the blood tests I felt my symptoms warranted, despite the new endocrinologist telling me my symptoms couldn’t be explained by my “numbers” and to discuss my symptoms with another doctor. When my results came in, my thyroid levels had swung from critical high to critical low in 7 weeks. Because of stories like mine, finding a doctor who is a skilled diagnostician who listens and cares about patients getting the care they need is imperative. Leslie Michelson has the information you need to make that happen.  

I love this subheading in chapter six, “Forgetting Who’s in Charge. (Hint: It’s You.)”

Every patient is vulnerable when illness strikes, despite the nature or urgency. As a nurse who cared for people in the emergency department, I know patients and family members are at their lowest point, they feel they have lost all control and their duress interferes with their ability to think logically. Often, the nurse or doctor must lead the patient or family member to give them the information they need. But, this doesn’t always happen. The Patient’s Playbook gives us what we need to be in command, whether it’s finding a new doctor or being hospitalized. It teaches us to be assertive, tolerant, proactive, and partners in our care.

Lastly, a good self-help book gives us, the reader, the ability to interact with the material on a personal basis. The chapter summaries, “Quick Guides”, allow us to swiftly review areas of the book that provide information we need under certain circumstances. Even if you aren’t sick—right now—you can use the information found in The Patient’s Playbook to advocate for those you care about.

“By the time you finish reading this book, you will have completely rethought the way you interact with caregivers and hospitals.” ~ Leslie D. Michelson

Leslie Michelson, J.D., “healthcare quarterback”, CEO of Private Health Management, says his book is “A call to action to change the way we manage our health”, and that is certainly motivation enough to read it. Please take a minute and visit ThePatientsPlayBook.com, “Look Inside the Book” at Amazon and check out the “Table of Contents”, “Read a Sample” at Barnes and Nobel.   The paperback will be released on Oct. 18.  Amazon

You can also find Leslie on Facebook at Leslie Michelson @PatientsPlaybook.

In healing,,Celeste

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"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

Sensitivity Irrelevant to Chronic Pain Says PROPS Doc

This blog is based on the New England Journal of Medicine article.

Intensity of Chronic Pain — The Wrong Metric? 

by Jane C. Ballantyne, M.D., and Mark D. Sullivan, M.D., Ph.D.

I left a comment at the NE Journal of Medicine website, and I responded to Pat Anson’s editorial at the Pain News Network. 

   © by Jen Jasper in Broken Body,

   Wounded Spirit: Winter Devotions

Ballantyne and Sullivan: “Opioids are a case in point: they have good short-term efficacy, but there is little evidence supporting their long-term benefit.”

To say there is “little evidence supporting the long-term benefit of opioids for managing pain” is simply not true. There are plenty of us who are able to function better because our pain is managed with opioids. You simply do not hear about them because good news is no news. Maybe you meant to say there are few studies. For which I reply, “Where is the EVIDENCE that long-term opioid treatment doesn’t work for managing for chronic pain?”

Ballantyne and Sullivan: “But is a reduction in pain intensity the right goal for the treatment of chronic pain?” 

I doubt few chronic pain patients, if any, expect their pain to be completely alleviated regardless of the treatment pathway. But they do expect reduction in intensity. Patients with this goal are far wiser than you are.

Whether pain is acute or chronic, it is a symptom. Assessment for location, onset, duration, character, AND intensity of any symptom is considered the standard of care for good reason. I hope I don’t have to explain why.

People experience chronic pain for two reasons, the underlying cause is untreatable, and/or misfiring in the brain causes pain to persist that otherwise wouldn't. Our brain extrapolates information and responds to chronic pain differently, but it is still pain. So, I ask Dr. Ballantyne and Dr. Sullivan, “Do you seriously believe assessing pain intensity is not important?” If you truly disagree with your peers on this, you are breaching the standard of care. You might want to think about this too editors and publishers of the New England Journal of Medicine. Is the message of bias against a certain patient population the one you want to send?

Ballantyne and Sullivan: “Patients who report the greatest intensity of chronic pain are often overwhelmed, are burdened by coexisting substance use or other mental health conditions, and need the type of comprehensive psychosocial support offered by multimodal treatment approaches.”

Often? I disagree. As part of a citizen’s leadership group of chronic painpatients, I see these people, I am one of these people, and you are way off base. When you make such statements, YOU become part of the problem.

I agree that people who live with chronic pain can feel overwhelmed. I am feeling overwhelmed reading this article. Why don’t you ask the pain doctors who include this aspect of their care for their opinion? Sure, we experience situational depression and anxiety, just LIKE YOU DO! But you are describing people with addiction, very real, but needing a different treatment, also woefully unavailable. Why should I even have to ask, “What does addiction have to do with pain intensity?”

Addiction is not the same as tolerance.

Ballantyne and Sullivan: “Multimodal therapy encompasses behavioral, physical, and integrated medical approaches.”

It does take a multimodal approach to manage chronic pain. The pain patient certainly knows that better than you do. We have resorted to, and been the victim of, charlatans that claim they have a cure. I have found meditation to be helpful with coping, but that doesn’t cure the conditions that cause my pain. Ask how many of us  keep several ice packs on hand for fear we won’t have enough. Ask us how many times we have been blistered by a heating pad because that was still less pain. Ask us how many use ointments, OTC products, TENS units or are willing to have electricity delivered to our spinal cord, just so we can have a REDUCTION IN OUR PAIN INTENSITY! Maybe you should ask the patient about the remedies they have tried before you write such an "insensitive" article. 

And, shouldn’t opioids be included as integrative care if they reduce pain so patients can participate in complimentary therapies? Oh that’s right, you don’t think a reduction in pain intensity is an important measurement.

While we’re at it, “When was the last time your physician asked about your spiritual awareness, or your circumstances at home?” And, just on the chance that they did (because they are in tune with treating the body as a whole) were they able to provide you with resources? If they could provide access to alternative treatments, are they affordable for everyone?   

On December 2, 2015 my friend Jan Chambers, President of the National Fibromyalgia& Chronic Pain Association and collaborative leader in the PAINS Project, of which I am a participant, had this to say.

NPS misstatement by PROP's President Ballantyne

Drs. Ballantyne and Sullivan incorrectly state that the U.S.established a National Pain Strategy (NPS) to address the enormous burden of chronic pain to 100+ million American adults. In fact, the NPS draft was completed by summer of 2014 but has not re-emerged from the U.S. Dept. of Health and Human Services since then (18+ months) despite requests by many patients, citizens, professional medical groups, and patient advocacy organizations. Chronic pain patients are worse off now because many doctors refuse to treat them; one result of unintended consequences from recent opioid abuse deterrent policies. Lack of a NPS and research funding hurts everyone. With no access to care or new, effective treatments, people with chronic pain are literally cast aside by society and treated inhumanely. The authors would like us to believe that NPS initiatives are in place, reducing suffering and brain-seizing pain, when they ask the ludicrous question, “But is a reduction in pain intensity the right goal for the treatment of chronic pain?” I guess that life-altering and debilitating chronic pain must not be such a burden after all.

If you are a doubter, be grateful, you have not experienced such pain, because one day you may. I have witnessed the change in perception in my own circle of family and friends. If you need a narcotic, it isn’t so bad after all.

“The only pain that is tolerable is somebody else’s.”

~David Sherry, MD, pediatric rheumatologist

Put your thinking hat back on. Don’t be part of the problem, be part of the solution. Embrace this adversity as an opportunity for change before you seriously harm someone, including yourself.

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

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

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. 

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

Costs Associated with Fibromyalgia: What’s Up with That? by Celeste Cooper

"When I was young I thought that money was the most important thing in life; 

now that I am old I know that it is."

~Oscar Wilde

How one answers the question, "What are the Costs Associated to FM?" depends on who you ask. Treating fibromyalgia is a costly business because often times it takes years for the right diagnosis. Patients will return for medical care until they get the answers they need. Why does it take so long to be diagnosed? Many care providers are unaware of other conditions that co-occur more frequently with fibromyalgia, and therefore, those conditions go unnoticed and untreated and the patient experiences unnecessary pain and fatigue from a wound up brain trying to process many messages at once.

Side Note: We need consistent diagnostic criteria such as that I reported on in my blog, The 2013 Alternative Criteria Dr. Robert Bennett, et al. – Interpretation for patients and providers by Celeste Cooper, here. Also shared on ProHealth here.

Ask the patient about the cost of having fibromyalgia. Most of the therapies found to be helpful, warm water therapy, acupuncture, acupressure, myofascial release, massage therapy, therapeutic trigger point massage therapy (for comorbid myofascial pain syndrome), T'ai Chi, Yoga, and other complimentary and alternative therapies are not covered by insurance, and if they are, they are capped. This means that most of the treatments suggested will never happen unless the patient has an endless supply of money.

Take a look at the latest Pain Action Alliance to Implementa National Strategy  policy brief NEVER ONLY OPIOIDS: The Imperative for Early Integration of Non-pharmacological Approaches and Practitioners in the Treatment of Patients with Pain accessible from my website here. 

We know that fibromyalgia patients need ongoing care, particularly since we have other painful comorbid conditions. The alternative diagnostic criteria by Bennett, et al, are comprehensive and can easily guide the diagnostician to the right conclusion (see side note above). If we can get integrative therapies moved to mainstream medicine, the overall cost to everyone will go down and the patient will have a better outcome.

You can also find my answer here  to What are the monetary costs associated with fibromyalgia? Don’t miss the hundreds of other questions answered by Celeste and others on Sharecare.com here.

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

Celeste Cooper, RN

Author, patient/ advocate, fibromyalgia health expert

Website: http://www.TheseThree.com

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

Fibromyalgia Not a big secret, but does your doctor know? by Celeste Cooper

Many of us have been psychologically bruised. We've endured hurtful comments by those in charge of our healthcare, family and friends; I speak for over five million Americans.  But one thing I know for certain, knowledge is our power.

Most agree fibromyalgia is due to a disruption in the Hypothalamus Pituitary-Adrenal (HPA) axis.  Big words that indicate a disruption in a major system of our brain (part of the central nervous system, CNS, which also includes the spinal cord) and its ability to properly receive sort and respond to messages from the peripheral nervous system which is everything outside the CNS. This breakdown in communication between the body and the brain not only leads to amplification (centralization) of pain, it also explains why other conditions co-occur with fibromyalgia, but not in say, low back pain (also thought to be centralized pain.)

The primary symptoms of FM are:

1)      Body-wide pain.
2)      Non-restorative sleep causing fatigue.
3)      Cognitive deficit causing trouble finding words, onset of dyslexic behavior, and memory problems.   

If your healthcare provider tells you other symptoms are from fibromyalgia, they are not, but they could be due to a co-occurring condition, also called comorbid.  For instance, feeling cold could be attributed to Raynaud’s syndrome or hypothyroidism.  The same is true for dry skin and mucous membranes, which might indicate, SICCA, Sjögren’s or hypothyroidism.  Bloating could be due to small bowel intestinal overgrowth, IBS, or leaky gut syndrome. Visual disturbances could be associated with migraine, both silent and classic, or knotted up pieces of muscle fiber (called myofascial trigger points) in the face or neck, etc.  It is important for your doctor to understand the comorbid conditions, because the criterion for diagnosing each of these disorders is specific and having them appropriately treated will minimize aggravating factors to fibromyalgia, your pain and ability to cope effectively.

Conditions to be considered are:

 ·         Chronic fatigue syndrome/myalgic encephalomyelitis·         Hypothyroidism
·         Raynaud’s
·         Adrenal problems
·         Myofascial Pain Syndrome
·         Allergies
·         Bowel  -  irritable bowel syndrome (IBS),  Small intestine bacterial overgrowth (SIBO), Leaky Gut Syndrome (LGS)
·         SICCA or Sjögren’s
·         Bruxism
·         TMJ/TMD
·         Systemic Lupus erythematosus
·         Hypothyroidism  and possible Hashimoto’s
·         Interstitial Cystitis or irritable bladder
·         Restless Leg Syndrome
·         Severe headache/migraine
·         Postural Orthostatic Tachycardia Syndrome
·         Neurally Mediated Hypotension
·         Depression and anxiety
·         Rheumatoid Arthritis
·         Ankylosing Spondylitis
·         Lupus (SLE)
·         Idiopathic edema (unexplained swelling)
·         Piriformis syndrome
·         Pelvic Pain (endometriosis, pelvic floor pain, sexual dysfunction, rectal pain, vulvodynia, and impotence)

The biological aspects of FM have been greatly ignored.  Primary physicians are not always adequately trained in diagnosing fibromyalgia.  They have their own continuing medical education requirements and professional journals that focus on being adept at family and primary medicine.  If you feel you physician does not consider what I have presented here, or he/she is unwilling to look into your symptoms further, should you have them, get a second opinion.

We all need to be diligent about knowing our body, noting any blatant or subtle changes in symptoms, and to track and report them, after all, who else will care as much as we do?  Identifying and treating all aggravating factors, including overlapping conditions can have a profound impact on how we feel. 

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

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com