Missing link found between brain, immune system; major disease implications -- ScienceDaily

Missing link found between brain, immune system; major disease implications -- ScienceDaily

A Patient Powered Network: Change Agents for Relieving Pain in America by Celeste Cooper

A Patient Powered Network

Relieving pain in Kansas City (RPnKC) is a patient-powered leadership group with the goal of securing and promoting clinical data research network (PPRN) based on a collaborative, community-driven, community-based participatory research model. We are a group that believes patients have a role to teach others on important key issues based on improving our outcome as people living with chronic pain.

You can be a leader too - read on!

As participants in this patient powered research network, RPnKC patient leaders are united in an effort to change the way pain is “perceived, judged, and treated” as outlined in the Institute of Medicine Report “Relieving Pain in America: A Blueprint for Transforming Prevention,Care, Education, andResearch.”  We feel privileged for the opportunity to use OUR VOICE to influence research on therapies, coordinated care, alternative and integrative medicine, access to care, quality care without bias, research regarding many factors that influence chronic pain, and much more. The Center for Practical Bioethics through their PAINS Project   hold  us to the highest esteem, both in their hands and in their hearts.

Patient Outcome Based Research - By for and with Patients

We are an eclectic group with a variety of chronic pain conditions and backgrounds who have come together for this collaborate effort. We want to be part of the transformation. We want to work collectively with anyone who is willing to promote us in an effort to seek patient outcome based research that will solve the epidemic of untreated or undertreated pain, and we are achieving that goal. We understand, and we want our providers to understand that we are more than our pain, and that pain affects us physically, emotionally, socially, financially, and spiritually. We think it is important that our voices be heard.   Each of us has our own ideas based on our individual experiences, and for the first time, patients will influence research that answers questions posed by us. 

The Right to Ethical Treatment

We believe that we have the right to moral and ethical treatment of our pain, that we have the right not to be judged because we are in pain, and that we have the right to treatments focused on improving our outcome that fit within individual conceptual framework, support safety nets, and to speak up for those less fortunate. In an effort to promote our beliefs, we advocate for research, not only for ourselves as patients in pain, but for over 100 million Americans.

We believe we can set an example that will resonate across America, and we can do that best by participation in this important movement. We can do this despite the obstacles we face every day because we live with chronic pain. Never before have we had the opportunities provided by the vast experience and abilities offered by the many organizations and health centered research organizations, healthcare institutions, and others who are coming together to support the Center for Practical Bioethics in this endeavor.

Find Power in Your Voice

It is our greatest desire that you too will have such an opportunity in your area. I encourage you to share information with your legislators, your local medical groups, local media, and reach out by joining the PAINS Project and encouraging others to do the same. You too deserve to feel empowered as part of this national movement. If you have questions on how to do that contact MaryBennett, Alliance Development Director. 

Sincerely, Celeste Cooper 

Website 

Connectwith Celeste 

AuthorProfile Amazon

HealthCentral Chronic Pain Pro

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

Day Four – Migraine Awareness, Fibromyalgia, and Chronic Myofascial Pain - The Blog Challenge

I have been a migraineur since puberty, for me, the consequences of genetics. My paternal grandmother was also a migraineur, and I always thought that like her, I would be free of this hideous disease by the time I reached my fourth decade in life. That was my dream, my hope, my reason for coping for so many years— a welcome light at the end of a long dark tunnel. But, the only thing that has changed is they are more frequent, and I have acquired additional triggers, spinal degeneration, myofascial pain syndrome, and fibromyalgia. 

My maternal grandmother had “muscular rheumatism,” an old name for fibromyalgia. I can count on trigger points in my neck, upper body, and face to act as weapons firing on the bulls eye, my trigeminal nerve. A cascade of events begins on my right side, my nose starts to run, and the world starts to appear as though I am viewing it from under water. For me, myofascial pain syndrome is one of several peripheral pain generators to both migraine and fibromyalgia, two centrally mediated disorders.

Centrally mediated = beginning in the central nervous system, the brain and spinal cord

After visiting with others who share this conundrum, I know I am not alone. This is immensely comforting in one way, and horrific in another. No one would wish any one of these painful conditions on someone else, not even their archenemy. (If they would, they need to hone some coping skills, maybe see a therapist.)

Migraine Awareness

It was once thought migraines were due to vasoconstriction of blood vessels in the brain. However, new evidence suggests migraines are caused by a nerve disruption. Teri Robert, President of the American Headache andMigraine Association, says, “We had a fascinating presentation in Scottsdale in 2010 showed imaging of a migraine in progress with no vasoconstriction at all.” 

I attended one of her organization’s (AHMA) symposiums for patients. After living as a migraineur for nearly 50 years, I learned more about the disease at that event than I have ever learned from those who have treated me. The one thing I know for certain, if you suffer from chronic migraine, you want a neurologist who specializes in treating headaches.

Possible Connections

Not all migraineurs have myofascial pain syndrome nor do they have fibromyalgia. However, we do know that peripheral pain (such as that from myofascial trigger points) does intensify the body-wide tenderness of fibromyalgia and can be a trigger for a migraine attack.  We also have evidence that there is prevalence of migraine in fibromyalgia. 

Peripheral pain generator = pain that is initiated outside the central nervous system 

Regardless of other conditions we have, as a migraineur, the most important thing is to control any perpetuating factors.

What Wouldn’t We Do?

We know the drug trials, the willingness to have needles stuck around the eye and in the cranium (feeling like, and hearing, the crunch of a rice crispy treat). We agree to have needles stuck in our body orifices, or spinal canal. We are willing to have foreign objects permanently implanted in our body like the bionic woman or the six million dollar man. We are willing and anxious to try the many tools covered by the American Headache Society or have as many as 35-40 trigger point injections in one setting. These are things otherwise healthy people consider torturous. Are we insane, as once suggested regarding migraine, fibromyalgia, and myofascial pain? The answer is NO! What it does imply is we are desperate and on the positive side, we are credible regarding our complaints. If your physician doesn’t see it this way, it’s time to find a new one. 

So, the answer to “What Wouldn't We  Do?” to relieve or even minimize our pain is:

NOTHING!

Clinical trial participants are willing to undergo any treatment and even risk their well-being in a quest to help others and themselves. We are a group of empathetic folks, which speaks to our character.

Marching On

I can’t make your pain or mine go away, but I can say I am privileged to march with you, my fellow bandleaders. We may march to a different drum, but we march.

Live boldly; stand out, join the AHMA to RAISE AWARENESS for migraine and all the things that accompany the life of a migraineur.

"The Migraine and Headache Awareness Month Blog Challenge is organized by the American Headache and Migraine Association." - See more at: http://www.ahmablog.com/2015/06/migraine-headache-blog-challenge-4.html#.VXCxFs-rTIU

~ • ~ • ~ • ~ • ~ • ~

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

NEW 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.  

Migraine, Fibromyalgia, and Chronic Myofascial Pain by Celeste Cooper

I have been a migraineur since puberty, for me, the consequences of genetics. My paternal grandmother was also a migraineur, and I always thought that like her, I would be free of this hideous disease by the time I reached my fourth decade in life. That was my dream, my hope, my reason for coping for so many years— a welcome light at the end of a long dark tunnel. But, the only thing that has changed is they are more frequent, and I have acquired additional triggers, spinal degeneration, myofascial pain syndrome, and fibromyalgia. 

My maternal grandmother had “muscular rheumatism,” an old name for fibromyalgia. I can count on trigger points in my neck, upper body, and face to act as weapons firing on the bulls eye, my trigeminal nerve. A cascade of events begins on my right side, my nose starts to run, and the world starts to appear as though I am viewing it from under water. For me, myofascial pain syndrome is one of several peripheral pain generators to both migraine and fibromyalgia, two centrally mediated disorders.

Centrally mediated = beginning in the central nervous system, the brain and spinal cord

After visiting with others who share this conundrum, I know I am not alone. This is immensely comforting in one way, and horrific in another. No one would wish any one of these painful conditions on someone else, not even their archenemy. (If they would, they need to hone some coping skills, maybe see a therapist.)

Migraine Awareness

It was once thought migraines were due to vasoconstriction of blood vessels in the brain. However, new evidence suggests migraines are caused by a nerve disruption. Teri Robert, President of the American Headache andMigraine Association, says, “We had a fascinating presentation in Scottsdale in 2010 showed imaging of a migraine in progress with no vasoconstriction at all.” 

I attended one of her organization’s (AHMA) symposiums for patients. After living as a migraineur for nearly 50 years, I learned more about the disease at that event than I have ever learned from those who have treated me. The one thing I know for certain, if you suffer from chronic migraine, you want a neurologist who specializes in treating headaches.

Possible Connections

Not all migraineurs have myofascial pain syndrome nor do they have fibromyalgia. However, we do know that peripheral pain (such as that from myofascial trigger points) does intensify the body-wide tenderness of fibromyalgia and can be a trigger for a migraine attack.  We also have evidence that there is prevalence of migraine in fibromyalgia. 

Peripheral pain generator = pain that is initiated outside the central nervous system 

Regardless of other conditions we have, as a migraineur, the most important thing is to control any perpetuating factors.

What Wouldn’t We Do?

We know the drug trials, the willingness to have needles stuck around the eye and in the cranium (feeling like, and hearing, the crunch of a rice crispy treat). We agree to have needles stuck in our body orifices, or spinal canal. We are willing to have foreign objects permanently implanted in our body like the bionic woman or the six million dollar man. We are willing and anxious to try the many tools covered by the American Headache Society or have as many as 35-40 trigger point injections in one setting. These are things otherwise healthy people consider torturous. Are we insane, as once suggested regarding migraine, fibromyalgia, and myofascial pain? The answer is NO! What it does imply is we are desperate and on the positive side, we are credible regarding our complaints. If your physician doesn’t see it this way, it’s time to find a new one. 

So, the answer to “What Wouldn't We  Do?” to relieve or even minimize our pain is:

NOTHING!

Clinical trial participants are willing to undergo any treatment and even risk their well-being in a quest to help others and themselves. We are a group of empathetic folks, which speaks to our character.

Marching On

I can’t make your pain or mine go away, but I can say I am privileged to march with you, my fellow bandleaders. We may march to a different drum, but we march.

Live boldly; stand out, RAISE AWARENESS for migraine and all the things that accompany the life of a migraineur.

Resources

• Teri Robert as Migraine Health Guide at Health Central 
• Celeste Cooper as Chronic Pain Pro at Health Central http://www.healthcentral.com/profiles/c/662034
• The American Headache and Migraine Association 
• The American Headache Society 
• About Fibromyalgia on my website (including my thoughts on the diagnostic criteria and other helpful links)
• National Fibromyalgia and Chronic Pain Association
• Fibromyalgia at ProHealth 
• The International Myopain Society 
• About Myofascial Pain Syndrome at Celeste Cooper.com (including video presentation, treatment tools, a diagram of a trigger point, and helpful links)
• Myofascial Pain Syndrome by Health Central Chronic Pain Pro, Celeste Cooper
• Fibromyalgia Tender Points or Myofascial Trigger Points:Knowing the Difference for the Right Diagnosis by Health Central Chronic Pain Pro, Celeste Cooper
• About Our Books for Living with Chronic Pain

~ • ~ • ~ • ~ • ~ • ~

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

NEW 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.  

Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain, SUMMER DEVOTIONS

Summer is just around the corner, and with it comes challenges for the person living with chronic pain and illness. Being prepared to face each day, sometimes each moment, is important for maximizing the many aspects that confront the person living in pain. Following is information on SUMMER DEVOTIONS in the Broken Body, Wounded Spirit: Balancing the SeeSaw of Chronic Pain series.

About the Book 

By focusing on each summer day, the authors send their readers on a personal journey that allows them to restructure their personal experience with pain. In the foreword, Erica Verillo says “...Organized into a “book of days” each chapter offers a combination of practical coping advice – how to manage the sleep disorder that often comes with chronic pain, dietary considerations, and how to review the effectiveness of treatments – information (what do all those medical acronyms mean?), and guidance through the emotional turmoil of chronic illness...”

Finding physical, emotional, mental, and spiritual balance can be challenging for the person living with chronic pain. There is a primal need to provide physical comfort and positive interactions with others. Though this is something everyone faces, those who live with chronic pain are confronted with these challenges, and more, every day. Summer Devotions strives to help readers reclaim control over their lives by interacting with daily prompts for inward reflection. Everyone's experience with pain is unique and so should be their strategies for coping.

"Broken Body, Wounded Spirit takes those who suffer from chronic pain and illness on a magical ride to a place where all patients need to go: a place of relaxation, solace, and perspective. Woven in a rich pattern of interrelated tips, stories, and lovely truisms, we learn that we control our journey, and that being mindful of the realities of dealing with a chronic disease puts us in charge. I highly recommend this soulful little book."
 ~Richard Carson, Health advocate and Founder of ProHealth.com
From Summer Devotions Inside the Cover

“A must have for anyone suffering from the frustration of chronic pain. Best part about this book is you don't have to read it in order... I've skimmed through several times and each time there is another inspiration just waiting!”  Amazon Reviewer

 “I am only about halfway through this book, but have found it thought-provoking, insightful and uplifting. I don't read a lot, and this is broken down into daily readings which is helpful, yet I often find myself wanting to read more than one days worth at a time. I would highly recommend this book and the fact that it is available on Kindle on my phone and I can take it with me and read it anywhere is an added bonus! “Hannah, AmazonReviewer 

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Celeste  is an advanced trained RN who was forced into early retirement because of chronic pain. Her experience as an educator, an advocate, and a person living with chronic pain gives her a unique perspective. Her motivation for writing self-help books is to fulfill her personal purpose of helping others. Celeste believes it is up to each individual to explore ways to improve their life and encourages her readers through the exercises included in her works. She also believes every person deserves to be treated with dignity and respect and understands first-hand that is something each person must learn to demand in a kind and meaningful way, despite judgment imposed by others. For that reasons she advocates and educates.

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Jeff  Miller, PhD is a clinical psychologist with several specialties, including management of chronic pain disorders.  His goal is to help patients learn to cope with the psychological and spiritual aspects of pain and provide easy to use tools for maintaining forward momentum in their life.

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Available:

Amazon (Also available in Kindle) 

Barnes and Noble 

Amazon UK 

Amazon Canada 

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

May Awareness: Sharing Our Spoons by Celeste Cooper

Moving into the Month Of Spoonies

Did you know?

• Those who learn to live despite chronic illness or pain are called spoonies.
• May is awareness month for:

• Allergy
• Arthritis
• Chronic Fatigue Syndrome (ME/CFS, SEID)
• Ehlers-Danlos Syndrome (EDS)
• Fibromyalgia
•  Lyme’s Disease
•  Neuropathy
• Osteoporosis
• Systemic Lupus Erythematosus (SLE, Lupus)

ALLERGY– The role in immune dysfunction

Allergy may be coexistent with or aggravate many conditions. “Allergy symptoms are in response to an abnormal neurotransmitter, specifically, histamine.” (Cooper and Miller, 2010) 

Take the Health Central “Allergy Quiz”. 

ARTHRITIS

Arthritis is an umbrella term for many disorders that affect our joints. The most common type is osteoarthritis. Research is advancing what we know of about osteoarthritis.

See Health Central article "Arthritis Awareness Month: More than 100 Types of Arthritis and Related Diseases" by Lisa Emrich, Follow me, Celeste Cooper, Chronic Pain Health Pro and other "Health Guides and Pros" who walk the talk. Ask questions, comment, share your story. 

CHRONIC FATIGUE SYNDROME (ME/CFS/SEID)

Advances have been made in understanding the biology of ME/CFS.  Love it or hate it, and there are reasons for concern, the Institute of Medicine proposes a name change that addresses the most common component, systemic exertion intolerance disease (SEID). There is genuine concern that this name, while addressing a biological cause, may result in ignoring other biological changes that have been associated with ME/CFS. Many people educate and advocate for those of us with this dreadful disorder. You can find out who they are on my website here. 

EHLERS-DANLOS SYNDROME (EDS)

Ehlers-Danlos Syndrome is a genetic disease with several types under its umbrella. Characterized by joint hypermobility, skin elasticity, and connective tissue fragility, this disease results from atypical (unusual) proteins are responsible for the fragility of collagen, which is the glue for our tissue. Some patients with EDS also have fibromyalgia or are susceptible for developing myofascial pain syndrome. Read on. 

FIBROMYALGIA (FM)

We are learning more about fibromyalgia. Several researchers believe they are close to finding biomarkers, but the stigma lives on because of those who hold tight to the in ill-conceived notion that fibromyalgia is a psychosomatic disorder. In light of more recent research, how and why remains a mystery to me. But, as I always say, there is opportunity in adversity.

It’s possible that finding the answer to FM will unlock our understanding of other chronic pain disorders associated with pain (pain that is amplified by our brain’s perception). I have written many blogs on fibromyalgia; check out the archived blogs to the right listed according to month.

LYME’S DISEASE

“Lyme disease is caused by the spirochete bacterium, Borrelia burgdorferi. The infection is passed to humans by the bite of an infected tick carrying the microorganism. Symptoms include a “bull’s eye” rash at the site of the bite, malaise, fever, headache, muscle aches, and swollen lymph nodes. Untreated Lyme disease can result in symptoms occurring months or years after the initial exposure and causing damage to the heart, joints, and nerves of infected individuals. Symptoms can imitate other diseases and can be misdiagnosed.” (Cooper and Miller, 2010)   

It is very sad to say, but despite overwhelming evidencethat Chronic Lyme’s Disease  exists, there are those who doubt it.

OSTEOPOROSIS

Osteoporosis is diagnosed according to bone density tests. Poor bone density makes our bones fragile increasing fracture. A common complication of osteoporosis is hip fracture, and the mortality of hip fracture in the elderly is very high.  Watch a great overview of osteoporosis and prevention on Health Central. 

NEUROPATHY

“Neuropathy is any functional disturbance or pathological change in the peripheral nervous system; also used to denote nonspecific lesions, in contrast to inflammatory lesions.” (Cooper and Miller, 2010)

Neuropathy can be due to an array of medical conditions. It can also be idiopathic, meaning that the cause of symptoms is unknown. Read about neuropathic pain. 

SYSTEMIC LUPUS ERYTHEMATOSUS (SLE, Lupus)

Systemic Lupus Erythematosus is poorly understood and under researched. The cause is unknown. Often referred to as Lupus (not to be confused with discoid lupus), SLE affects predominately women, African Americans, Hispanics and Asians and is generally diagnosed between puberty and mid age. It is an inflammatory autoimmune disease that causes destruction of the body’s various connective tissues. Read on.  

You can learn more about Lupus in an article by Leslie Rott at Health Central, “Lupus is as Lupus Does”. 

BRINGING IN THE SPOONS

While we wait for such evidence, it is important to remember that regardless of our diagnosis, regardless of biomarkers, we are yet to find the cause or a cure for many immune or neuro-immune disorders. So, we must find ways to cope in a healthy way. You can find coping 

and management strategies on my website.

To all my fellow SPOONIES, thank you for sharing this journey. 

~ • ~ • ~ • ~ • ~ • ~

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

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate—Sharecare Fibromyalgia Health Expert

NEW 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.  

Healing What Hurts: The Politics of Pain: A Symposium Overview by Celeste Cooper

The Dinner

The energy in the room was palpable at the Center for Practical Bioethics dinner. Two outstanding women, Kathleen M Foley, MD (who would be speaking the next day) and Noreen M. Clark, PhD (posthumous) were recognized for their dedication and commitment to palliative care with the “Vision to Action Award." 

Keynote speaker Keith Wailoo, PhD gave us a look at the history of pain, its perception, and its treatment through the years with the overview of his book “Pain: A Political History.” 

People from the “Center” as they refer to themselves are the remarkable people I am privileged to know. The theme, Healing What Hurts, was resonate. Hundreds of eye’s moistened, and the audience was moved as fellow patient leaders from “Relieving Pain in Kansas City” shared their poignant stories in an interview video. It is because those at the Center give their time and talent that we, as patients, have a voice. So often, we only hear the negatives of pain, but being part of the Pain Action Alliance to Implement a National Strategy (PAINS),  an initiative of the Center, is energizing and empowering. 

http://www.practicalbioethics.org/  

Day two

Welcomed by Dr. Marc Hahn, the day got a terrific start with introductions and an overview on chronic pain by Myra Christopher. We were introduced to Joan Berkley’s family, who are kind and caring, no surprise. Joan Berkley was a board member of the Center of Practical Bioethics and dedicated her time and her memorial to ethical treatment of patients. Her legacy lives on in this eighth year of the Joan Berkley Bioethics symposiums.

Healing What Hurts: The Politics of Pain

Throughout the day, we heard about every aspect of pain and politics. I appreciated the opportunity to engage with the speakers, the topics, and other members in the audience. The day was full of information on the many things that affect the politics of pain and its impact on patient care. We explored the need for evidence-based policies on state and national levels, and we heard from a patient living with pain, Janice Lynch Schuster, who represents those of us who live with a stigma for no other reason than we experience chronic pain. 

Dr. Wailoo, author of Pain: A Political History, and Dying in the City of Blues: Sickle Cell Anemia and the Politics of Race and Health spoke of pain and politics, the shifts, the battlegrounds, the perceptions (some very similar to today), bigotry, ethics, culture and welfare. As he worked his way through his presentation, it became evident to me that the history of Americans’ perceptions of pain and its treatment is a pendulum swinging back and forth like a Grandfather Clock. 

The disparities of pain care are not new. Dr. Bonica, known in the 70's as the father of pain medicine because of his integrative approaches, kept a diary of 100 interviews of pain care providers. What he found was everyone had their own theories. As decades roll on, the pendulum shifts from social rights such as disability, relinquishment of those rights, restoration of those rights, medical to legal, hateful, and almost lunatic accounts of pain, and back again. Pain perceptions evolved from medical assessment to becoming a political resting post of right vs. left (ethical vs. bigoted, not necessarily in that order) to entering the realm of legalities. History should be a teaching lesson, but as someone said in the closing remarks, if you asked 100 pain physicians today how to treat pain, you would still get 100 different answers. We have work to do.

Many things were discussed including access to prescriptions. Challenges include, refusal to fill, long commutes to a pharmacy that can and will, lack of patient funds to pay out of pocket for medications or required drug screening because insurance will not reimburse, and more. According to Dr. Foley, there is no evidence that decreasing opioid prescriptions, lowering doses, or the implementation of drug monitoring programs have any effect on opioid overdose or misuse. So what are our political leaders doing to prove their case for continuing to implement costly programs that have no evidence they work? As Bob Twillman, PhD put it, why would we keep doing the same thing and expect different results? We hear repeatedly how costly pain is to America, but exactly who is driving these costs up, and to what end? 

Dr. Twillman says addiction rates have not changed and he asks, “Will decreasing the number of opioid prescriptions written correlate with a decreased number of patients in pain?” Anyone with common sense knows the answer to that question. So, I ask, "Why are our politicians and governing agencies making such an absurd plan?" We were reminded that we have an election coming up. Maybe we should all think about these things and share our stories with our political figures as suggested by Katie Horton, JD, RN, MPH. She says we should challenge our representatives on why they support programs that are not curbing drug abuse, deaths, or improving patient pain care. For more information on policies, legislation and regulations check out SPPAN, State Pain Policy Networks, and please read and act on my blog:  

We learned from Dr. Richard Payne that the science of epigenetics (studying genetic outcomes of nature/nurture and the effect on DNA expression) could be a potential biomarker for chronic pain. 

As suggested by Dr. Richard Payne and Melissa Robinson maybe we should encourage our congressional representatives to explore the ethnic, racial, social, and behavioral influences on the treatment of chronic pain. Maybe we should research how to treat pain with patient centered goals, not political agendas. We need our physicians to join us in the plight for patient centered care and fight for their right to do so. Both Dr. Payne and Myra Christopher helped draft the IOM report, “Relieving Pain in America.”and they urge us to comment on the National Pain Strategy report that has resulted from the efforts of many, including the PAINSproject. You can read more on this on my blog: 

Make a Public Comment on the National Pain Strategy by Celeste Cooper (The deadline is in days, don't wait.) (Addendum, Public comments closed May 20, 2015)

Our psychosocial and basic needs are not being met. When our priorities are shelter and food,  our pain care takes a back seat, but it shouldn't have to. We must address these issues as the human thing to do, as an ethical obligation to ensure everyone has access to pain care. 

Dr. Lynn Webster, past president of the American Academy of Pain Medicine and author of The Painful Truth, has produced an award-winning documentary (self-funded), with the same name that will air on public television this fall. The documentary covers the spectrum of pain care, and as he says, “The art is in the story.” He hopes the movie “Cake” (love it or hate it) will affect the dialogue on chronic pain the way the Philadelphia Story paved the way for AIDS awareness. As Dr. Webster says, tapping into our emotions is the driving force for change, not science. This is evidenced by the effect media coverage on “The Politics of Pain.” His documentary approaches the right side of pain, the Painful Truth. Watch for its announcement. I know I will.

Trailer for "The Painful Truth"

Conclusion

I have the extreme pleasure and opportunity to know people who are fighting for truth, justice, dignity, social conscious, and treatment for each of us living with chronic pain. I met with Dr. Bob Twillman, Dr. Lynn Webster, Kim Kimminnau, Ann Corley, Orvie Prewitt, my fellow patient leaders at the Relieving Pain in Kansas City, and so many others. I am perpetually energized by these positive people with a common goal to change the way pain is perceived, judged, and treated. 

What Can You Do?

Feel the empowerment of being a change agent by joining a cause that will make a difference for millions of Americans who suffer daily with pain. 

• See what the Center for Practical Bioethics is doing, here.  
• Join the PAINS Project, here. 

About the Speakers

Marc Hahn, DO 

Myra Christopher 

Keith Wailoo, PhD 

Kathleen M Foley, MD 

Bob Twillman, PhD  

Katie Horton, RN, MPH, JD 

Janice Lynch Schuster, et al. Representing people who live with chronic pain

Richard Payne, MD 

Melissa Robinson 

Lynn Webster, MD   

John Carney, MEd 

Bruce Dubin, DO, JD

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

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