Chronic Pain Disease and the Opioid Crisis: Myra Christopher Changing the Narrative

If you are like me, you are upset by the reporting of the opioid crisis by mainstream media. I have found myself screaming at the television because of the skewed reporting. Make no mistake, there is an opioid crisis and it breaks my heart, but how in the world will we ever get those addicted the right treatment if we don’t look at the problem with eyes wide open? How can we blame and abandon people living with incurable diseases that keep the body at constant war with homeostasis because of the disease process that potentiates the disease of chronic pain?

“We must have balanced policy—policy that addresses two public health issues—untreated and inappropriately treated chronic pain and the opioid crisis—without unintentionally harming one patient population or the other. To get there, we MUST also have balanced media coverage.”

~Myra Christopher, Director of the Pain Action Alliance to Implement a National Strategy (PAINS, an initiative of the Center of Practical Bioethics)

Maybe you have read some of my blogs or visited my website where I share information on my personal opportunities as participant in PAINS and PAINS-KC. One of the pleasures of my own advocacy is getting to know and meet with Myra Christopher and the many other advocates and chronic pain citizens who share my journey. Following is Myra’s voice published in the PAINS Member Update, October 17, 2017.

Changing the public narrative about chronic pain as a disease

By Myra Christopher

Sunday night, I watched 60 Minutes on CBS as they interviewed Joe Rannazzisi, former Deputy Director over Diversion at the Drug Enforcement Administration (DEA). Rannazzisi was portrayed as a “whistleblower,” and he blamed drug distributers, unscrupulous physicians, and members of Congress for fueling the opioid crisis. The week before, NBC did a week-long series on the opioid crisis, and the week before PBS did one also.  I could go on—week by week by week—there is not a major news outlet (print, blog, television, radio, or web) that I could not list as well.

Before proceeding, I need to make two disclosures:

·        I have met and worked with Joe Rannazzisi.

·        We have worked with the DEA closely in the past—with Rannazzisi’s predecessor and colleagues at the DEA for whom I have great respect.

In 2008, we worked with the DEA, the National Association of Attorneys General, and the Federation of State Medical Boards to measure the impact of physicians diverting prescription pain medication. That study was published in the journal Pain Medicine (Vol. 9, No.6). I tell readers this to assure you that PAINS is very concerned about the opioid crisis and respects the role of law enforcement in protecting the US population from illicit drugs AND assuring that an adequate supply of medications is available to maintain the health and well-being of all Americans. My concern is about the irrefutable lack of media coverage of a related but separate public health issue, i.e., inappropriate and untreated chronic pain management.

On Friday, October 13, PAINS hosted a roundtable in Washington, DC, that included top officials in the federal government, leading pain care providers, people living with chronic pain and their advocates, academics and a handful of media representatives to discuss the need for more and better reporting on the “chronic pain epidemic” and the unintended consequences that pain sufferers are experiencing related to federal policy attempting to contain the opioid epidemic and the media frenzy around it. This is critically important because it is our view that media shape public perception and public perception leads to votes, which leads to public health policy – interestingly the foundation of the argument made by Joe Rannazzisi in his 60 Minutes interview.

·        For years, PAINS and others advocating for better chronic pain care have called for “balanced policy.” More than a year ago, PAINS decided to move upstream with our No Longer Silent initiative that led to last week’s meeting in DC. We must have balanced policy—policy that addresses two public health issues—untreated and inappropriately treated chronic pain and the opioid crisis—without unintentionally harming one patient population or the other. To get there, we MUST also have balanced media coverage.

“If it bleeds, it leads!” is an adage often repeated about media coverage. Granted, the chronic pain crisis is not as “sexy” as the opioid epidemic. However, both of these issues are critically important to our society’s health and well-being.

I will be honest that there are many days I feel pretty discouraged about ever accomplishing our goals, then I see a report like this one that appeared on the front page of the Worcester, Massachusetts paper which highlights the plight of Lauren Deluca and quotes PAINS Advisory Committee Member, Cindy Steinberg, who also lives with chronic pain. I encourage you to read this article and ask you to share it with your friends and colleagues via social media, email, carrier pigeon!

[Insert from Telegram.com, Worchester, Massacusetts]

“Ms. Steinberg noted that legitimately prescribed painkillers weren’t the main source of the opioid crisis. The majority of fatal overdoses were associated with illegally obtained substances.”

SHARE

Many with chronic illness denied prescriptions in fight against opioids 

by Susan Spencer 

http://www.telegram.com/news/20170923/many-with-chronic-illness-denied-prescriptions-in-fight-against-opioids

We will ask you to do the same with the report from last week’s No Longer Silent meeting when it is published in mid to late November. Until then, let me share just a few “take-aways” from that meeting:

Improving chronic pain care in America will require culture change. More specifically:

·        Changing the public narrative about chronic pain as a disease

·        Removing the stigmatization of those who live with chronic pain and those who care for them

·        Better education of physicians, nurses AND patients

·        Reimbursement models that support comprehensive chronic pain care, not just prescription opioids, interventional procedures and surgeries

·        Better data and more research

It’s a tall order but what one of my colleagues calls “worthy work.”

Comprehensive chronic pain care will improve the lives of millions of Americans, save billions of dollars and reduce opioid prescribing.

My conclusion

Will people be left to chew off their limbs like wild animals to escape pain? Will we continue to read about suicides because of untreated or undertreated pain? Will the public continue to blindly trust those in authority who have a political agenda? Can we make informed decisions based on unfair, unbalanced reporting? Are we ready for the consequences of staying silent? Your voice is only a click away.  Please join the PAINS Project initiative...

No Longer Silent!

Additional Reading:

About Myra Christopher

Patient Powered Research Network Pain Action Alliance to Implement a National Strategy in Kansas City (PAINS-KC)

The Symposium "Patients as Teachers," "Clinicians as Learners," a Synopsis

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

Prejudice against Women Living with Chronic Pain

September is chronic pain awareness month and a perfect time to recognize that when it comes to chronic pain, women are treated differently than men.

by Jen Jasper
from  Broken Body, Wounded Spirit:
Balancing the See-Saw of Chronic Pain
Winter Devotions

Discrimination

There is a centuries old bias against women. Societal beliefs and recriminations have blamed women for their pain, calling us “hysterical.” Today—not much has changed. Our pain remains misunderstood, mistreated, undertreated, and sometimes untreated all together — simply because we are women. The gender gap between men and women is more like a chasm. 

If you are interested learning more about what I have to say, please read Women, Pain, Bias, and Discrimination.

Women’s Experience with Chronic Pain

Do Women Experience Chronic Pain Differently? The answer is yes.

A review of over 450 epidemiologic studies clearly demonstrates women are at a significantly greater risk for developing chronic pain. As females we have a cornucopia of possible chronic pain generators, some dominate in women and others are specific to our gender. Disorders and diseases that cause pain range from pelvic pain, irritable bowel syndrome, arthritis, to menstruation, female related surgeries, child bearing, etc. Hormonal differences and genetics also influence our pain. We tend to be more sensitive to pain—not the same as tolerance—and the character of our pain can be different because of the source, such as childbirth. And, the words we use to describe our pain also play a role in the way our pain is judged.

There’s no doubt our pain experience and the way we relate to it is different from our male counterparts.

 “Our health care provider’s words matter too. We should feel safe when communicating our concerns and symptoms and never judged for having a medical condition that has no cure. Our provider should be part of our team, part of our plan, not part of the problem. When we feel heard, we do better.”  

[Excerpt] Chronic Pain, Women, and Words

Trust

In my blog, The Painful Truth: A Book, a Documentary, a Meeting with Lynn Webster, MD (pain specialist, author, and producer), I wrote about something Dr. Webster said at a PAINS symposium. It resonated with me and I will likely never forget it. He said he always asked his patients, “What do you want [from pain care]? The answer was always the same, “Doc, I just want my life back.” He heard this same response repeatedly. Dr. Webster witnessed a primal release of emotions from his patients when he replied…

“I believe you.”

Trust is important to every chronic pain patient, particularly those groups who have been identified as being treated with bias. It's not just women who suffer the consequences of disbelief, judgment, and discrimination. We all need to be heard and for our care provides to believe what we say. If our provider is disinterested, they are not to be trusted. Trust, like communication takes two.

Conclusion

I think our understanding of pain experiences between men and women has a long way to go, as does our understanding of chronic pain in general. However, when we look at the influence gender has on chronic pain, we can say — women experience and report pain differently. 

Women are more likely to be wrongly diagnosed, and possibly told to take an antidepressant for their unspoken “hysteria”. Some of us are told to go home and rest until it passes, or we feel unheard and dismissed like a student sent to detention for misbehaving.

Despite the IOM report, Relieving Pain in America telling us there is bias and discrimination against women, and the National Pain Strategy telling us stigma and vulnerability exists, particularly in women exhibiting pain from conditions like chronic fatigue syndrome and fibromyalgia — we wait for change.

If you have suffered as a result, you might find the Guidelines for Pain Warriors on my website helpful.

Additional Reading: Two interviews this past year with two brave women:

Lacy Fowler

Patti Young

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: 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 blogs and comments are based on the author's opinions 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.

~ • ~ • ~ • ~ • ~ • ~

"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.  

Pain Action Alliance to Implement a National Strategy - Sitting Down in DC

This meeting is by INVITATION ONLY!

As patients and as advocates with and for chronic pain issues, it is important to know that we are supported and that others are moving forward in an effort to improve the way pain is perceived, judged, and treated.  Following is the agenda for the Pain Action Alliance to Implement a National Strategy  for the upcoming meeting January 26 - 28, 2014 in Washington DC. People representing organizations that support  IOM report "Relieving Pain in America"will be traveling great distances as they come together for this collaborative effort.

Pain Action Alliance to Implement a National Strategy (PAINS)

2^nd Annual  Meeting

January 26-28, 2014

One Washington Circle Hotel, Washington, DC

Meeting purpose:  Gather those involved in PAINS, leaders at HHS, other policy makers, funders and other key stakeholders to review and discuss the state of pain, importance of a public health approach, promising innovations/projects, and what it will take to establish chronic pain as a major public health issue.

Date/Time	Activity and Speakers/Presenters	Room
Sunday, January 26
6 – 7:30 pm	Welcome Dinner – Myra Christopher, PAINS Director Dr. Kathy Foley, Society of Memorial Sloan-Kettering                              Cancer Center Chair	Meridian
Monday, January 27
7:45 – 8:30 am	Breakfast and Networking	Lounge
8:45 – 9:00	Welcome and overview of the day – Richard Payne, PAINS Medical Director	Meridian
9:00 – 9:45	The state of pain – a post IOM report update – Anand Parekh, Deputy Assistant Secretary for Health (Science and Medicine)	“
9:45 – 10:45	Why a public health approach to pain – Jim Burdine, School of Rural Public Health, Texas A & M Michael Felix, PAINS Community Health Network Development Director	“
10:45 – 11:00	Break
11:00 – 11:20	HHS Health Literate Care Model  – Linda Harris, HHS	“
11:20 – 11:45	Innovations in patient-centered outcomes research – Suzanne Schrandt, PCORI Kim Kimminau, PAINS Research Consultant	“
11:45 am – 12:45 pm	Lunch and remarks – Phil Pizzo, Chair of IOM Task Force:  Relieving Pain in America	Lounge
12:45 – 2:15	Promising Community Practice Innovations/Projects ·         Oregon’s statewide efforts to  transform pain care – Jennifer Wagner, Western Pain Society ·         Successful chronic disease self-management focused on pain - Orvie Prewitt, Regional Arthritis Center ·         Community based practice guidelines for a biopsychosocial approach to pain management – Dr. Vikas  Agarwal , Heartland Health Center, St. Joseph, Missouri	Meridian
2:15 – 2:30 pm	Break
Monday, January 27	Continued
2:30 – 4:00	Discussion of current efforts to “transform the way pain is perceived, judged and treated”, including the work of PAINS and that of others ·         Progress ·         Trends ·         Opportunities and challenges Myra Christopher, PAINS Director	Meridian
4:00	Adjourn and break until reception
5:30 – 7:00	Reception - A Nation in Pain: Healing our Biggest Health Problem – Remarks and book sale and signing by Judy Foreman, author and nationally syndicated health columnist	Lounge
Tuesday, January 28
7:30 – 8:45 am	Breakfast   Note:   Lounge space will be open until              10 am for networking opportunities	Lounge
8:00 – 10:00	PAINS Steering Committee Meeting	Meridian
10:30 am – 12:30 pm	HHS efforts to develop an interactive educational video focused on strategies for effective chronic back pain management and informed patients based on the Health Literate Care Model and discussion on how to maximize the tool’s effectiveness and impact – Linda Harris, HHS and Yael Harris, HHS	“
12:30 – 1:30	Lunch	Meridian
1:30 – 3:30	Facilitated discussion on the potential unintended consequences of opioid control programs, and recommendations for policy research or action at state and federal level  - Katie Horton George Washington University School of Public Health & Health Service’s  Department of Health Policy and Kima Taylor, Open Society Foundation	Meridian
3:30	2nd Annual PAINS meeting adjourns – safe travels home!

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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