Being a published author five times, I know great joy and diversion from my own pain. I truly enjoy what I do. Writing for ProHealthand Health Central is a great opportunity to learn from the enlightening comments you
take the time to share.
We make great strides learning to cope with the effects of body-wide pain, non-refreshing sleep, problems putting thoughts and concepts together, and exhausted body systems. (If you are struggling to find balance, please pick up one of our books).
As I count my spoons, I remember my fellow warriors who also live with invisible illness and pain. As my dear
colleague, Dr. Robert Bennett and his team say, “A careful clinical evaluation is always
required in order to identify any condition that could fully account for the
patient’s symptoms and/or contribute to the severity of the symptoms.” It would be
overwhelming to include all my articles, but you can find them on my website now. Following are articles through last May on fibromyalgia and common overlapping
conditions. Please take your time, favorite this link and revisit it
when you have a particular question and please share what you learn with others
in the comments where the articles are posted, that’s how we all learn.
In
healing and hope, Celeste
Blood Test for Fibromyalgia: FM/a Test ® Is Real, Q and A(I
have started the process. Follow the link in my blog, scroll down and get
started. I asked for an insurance review and received a confirmation email,
along with a link to some paperwork to help my rheumatologist with collecting
the information, which will go into an important database.)
Some
of you may know I am having cataract surgery on the 12th. It’s important to me to
have better vision so I can continue what I love to do. This blog was prepared
in advance to raise awareness for FIBROMYALGIA AWARENESS DAY. I hope you will help me
spread the word by sharing this list of fibro related articles.
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.
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:
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.
Learn more about
Celeste’s books here. Subscribe
to posts by using the information in the upper right hand corner or use the
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Important legislation for the pain community is upon us. Please contact your senators by following this link. http://www.senate.gov/
Ensuring Patient Access and Effective Drug Enforcement Act of 2015
Senate Bill S. 483, HERE
House of Representatives Bill H.R. 471, HERE
An article on H.R. 471 in laymen s terms by PR Web, HERE
RE: Ensuring Patient Access and Effective Drug Enforcement
Act of 2015
S. 483 and H.R. 471
Dear Senator __________
Please support the pain community, as your constituents support
you, by voting for Senate Bill 483 (S. 483) and the House of Representative
Bill 471 (H.R.471).
People living with chronic pain are being greatly affected by
their inability to obtain the medications they need to help them function and
lead productive lives. We need collaboration between patients, law enforcement,
pharmacies, prescribers, advocates, and others to address the problems of
addiction, while preserving treatment options and dignity for people who live
with chronic pain and manage their care responsibly, the silent majority that
do not make the headlines.
Drug monitoring programs have no evidence that they are
working, so why are we spending extraordinary amounts of money on these programs?
Insurance carriers are refusing to pay for accurate testing, and patients
cannot bear the burden of this cost. It is unethical to deny treatment because
they do not have the ability to pay. We cannot keep doing the same things
expecting different results. Wouldn’t this money be better spent on programs
for those who live with addiction? These people are also being underserved
because current treatment programs are not based on patient outcome. They are
based on ability to pay.
This is just a sampling of the things that can be addressed to
improve both addiction and pain care, but it cannot be accomplished without a
collaborative effort. Senate Bill 483 and H.R. 471 are steps in the right
direction for serving all people in need.
I look forward to hearing how you plan to support the
patient community. Please feel free to contact me by phone to discuss this
important issue.
Please follow the link from the American Pain Foundation regarding a Seattle Times article on stringent laws being proposed for pain management. http://action.painfoundation.org/site/MessageViewer?em_id=13682.0&printer_friendly=1
You won't want to miss this one, and you better believe I left a comment as follows.
Since when does the government think they can tell a physician how to be a doctor? I am a chronic pain patient with severe osteoarthritis and inoperable severe spinal stenosis and premature degeneration. I also have fibromyalgia.
The trend set by pharmaceuticals is to treat pain with antidepressants and antiepileptic drugs because it raises their bottom line. I have tried them all and they either interact with my medications to treat my migraines, or leave me like a zombie, not to mention that during the courting period, they empty my pocketbook. Opioids are tried and true pain relievers that when used appropriately, improve function, but leave little room for profit margins. They are proven to be more effective in the treatment of acute and chronic pain.
Education is needed, some will become addicted, not to be confused with pseudoaddiction, options for education and medication vacations are in order, not government influence. I suppose the option is to treat all pain with antidepressants. I worked as an ER nurse for 20 years. I propose that these law makers or a close family member will one day have to make an ER visit for an accident that causes pain. I want to be there to see their reaction when the ER doctor explains the only thing he/she has to offer is a medication for depression or seizure. What happened to common sense?
Harmony and Hope, Celeste
All blogs, posts and answers are based on the work in Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper, RN, and Jeff Miller, PhD. 2010, Vermont: Healing Arts press are for educational purposes and not meant to replace medical advice. www.TheseThree.com
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