Friday, December 11, 2015

Sensitivity Irrelevant to Chronic Pain Says PROPS Doc

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

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?”

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.

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate

Celeste’s Website:

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.  

Saturday, December 5, 2015

Transforming the Pictures of Our Mind

In my last blog, The Setting, the Shutter, and the Power ofResolution, I talked about my 2015 New Year’s resolution. It's about translating 35mm film photography to my new digital SLR camera. The blog is more than that though; my story is a metaphor that unveils the face of opportunity when we are faced with the challenges associated with living with chronic pain and illness. 

A Universal Language

Most of you reading this blog know I am a writer of self-help books. If you have read any of the four books in the Broken Body, Wounded Spirit: Balancing the See-Saw of Chronic Pain series, co-authored with Jeff Miller, PhD, you know each day offers an exercise or a tidbit of information to inspire new ways for managing daily challenges. Each day begins with a picture chosen to convey a feeling on the topic at hand. They are positioned to do one of two things, reflect on our own treasured moments, or provoke us into action. A photojournalist knows the impact images have on him or her personally and in the hearts and minds of everyone who sees them. The language spoken through photography is universal.

“A picture held us captive. And we could not get outside it, 
for it lay in our language and language seemed to repeat it to us inexorably.”

― Ludwig Wittgenstein, Philosophical Investigations

The Influence of a Title

Titling a picture seems like such a simple thing. However, it has a powerful impact on how the photo speaks to us and it provides infinite possibilities for bringing life into focus. While my title may be different from yours, it still reflects a personal journey and allows us to explore our feelings. You don’t have to be a photographer to do this.

Find a favorite photo, name it, and then write a few words about the feelings it brings to surface. You might not remember the date, or even the circumstances surrounding the photo, but you will remember how it made you feel.

The power of photos is evident; they have become a visual experience that is shared across social media. When our emotions erupt, we find camaraderie as human beings. We can share our journey, photographer or not, the connections are universal.

Looking Beyond Clouds

The Embodiment of a Pain Advocate.

This picture is from Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain, Winter Devotions. I chose this particular photo for day sixteen, "Advocating for Pain” to represent several things. Living with chronic pain and illness can cloud our judgment. It can bring about tumultuous feelings, and sometimes cast a shadow over our desires. But, it’s more than that to me. This picture also represents a ray of light in the darkness, the promise of a bright sky, and treetops that lift our spirit upwards. For me, the telephone lines represent the connection and power we have to make a difference through advocacy. So, ad hoc, after the fact, I shall name this picture, “The Embodiment of a Pain Advocate.” 

What would you name it, and why?

Unchain Your Imagination

Experts tell us the power of a photo transcends all generations. So, next time you come across a shared photograph think outside the box. Take a moment; be flexible in your thinking.

Years ago in an effort to raise my endorphins through laughter, I began a photo journal of animals. I saved them for my personal enjoyment and I named them something that would spark the laughter that became buried by pain and illness. I resurrected my inner goofiness through laughter and photographs.  

We are born with an imagination and when we use it wisely, we loosen the grip chronic illness can create. Unchain your imagination. Share the creativity that lives within you.

~ • ~ • ~ • ~ • ~ • ~

"Adversity is only an obstacle if we fail to see opportunity."  
Celeste Cooper, RN
Author—Patient—Health Central Chronic Pain ProAdvocate

Celeste’s Website:

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

Celeste's Website

Celeste's Website
Click on the picture