As I said in
my June
blog, if
we want change, we are obliged to share our unique individual circumstances and
our life encounters. If you have been affected by having your opioids
restricted, if you want pain management that fits within your personal
framework, it’s time to use your voice.
Hope has turned in to reality; the FDA is listening!
Our voice is being heard, so
let’s keep using it.
ID: FDA-2018-N-1621-0001
The Food and Drug
Administration (FDA)
“Patient-Focused Drug
Development for Chronic Pain.” The public meeting will provide patients
(including adult and pediatric patients) with an opportunity to present to FDA
their perspectives on the impacts of chronic pain, views on treatment
approaches for chronic pain, and challenges or barriers to accessing
treatments. FDA is particularly interested in hearing from patients who
experience chronic pain that is managed with analgesic medications such as
opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs),
antidepressants; other medications; and non-pharmacologic interventions or
therapies.
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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As suggested in my article for ProHealth, there is a problem with research on fibromyalgia. It is all over the
place. The reason for this is partly due to how research is funded—sad, but true.
Drug Research
Several drugs have been suggested
for treating fibromyalgia but are they
helping?
“According to the polling, nearly all in-person and web
participants reported taking or having taken a prescription medication to treat
their fibromyalgia symptoms. Prescription drug therapies were described as
having widely varying degrees of effectiveness, and many participants noted
limited benefits or decreased benefit over time. Additionally, even if
effective, many participants described that they could not sustain treatment
because they were unable to tolerate their side effects.”
*A polling of FDA approved Lyrica®, Cymbalta®, Savella® and
other commonly prescribed medications.
Also in 2014, The Cochran Library
database said while it seems helpful in those who tolerate it, the number who
benefit from Pregabalin (Lyrica) is very small. Only one person in ten will
have any benefits. (Pregabalin for pain in fibromyalgia
in adults,
accessed April 29, 2017) That is underwhelming evidence compared to the
reported clinical trials on which the FDA based their approval.
Getting Unstuck
In our books I write about the
importance of critical thinking and problem solving, i.e. determining what we
think we want or need then go about finding ways to achieve it. But, when we
change the goal, or even our interpretation of the goal, so changes the way we
get there. Simply masking our symptoms so we can learn to live with it isn’t a
lofty goal to me. Instead, we should be looking at the cause, the necessary
step to finding a cure. That said, I support any medication, treatment, or
therapy you and your doctor work together to find, but we can’t get stuck in
thinking that’s all there is. We need to know how to treat fibromyalgia as a
disease and manage it as we do diabetes, thyroid disease, etc.
As years pass by, we see a
recurring theme regarding the
hypothalamus-pituitary-adrenal (HPA) axis involvement in fibromyalgia. And
as we advance, we learn more about how this might work. You see, the HPA axis is
constantly recalculating based on stress signals from the mind or body. For
instance, if it receives feedback that there is an imbalance in the immune
system this intricate system activates to restore order.
Immune Cells
Behm FG, et al. found specific immune
cells in FM using a specific method. That is what led to the FM/a® blood test.
This finding doesn't necessarily negate previous studies on the HPA response in
fibromyalgia. Instead, this and other “Peer-reviewed Medical Publications” (below), support immune system involvement in fibromyalgia, which could be upsetting the body's ability to achieve balance. When we treat the root cause in any disease, it makes the job of the HPA much easier.
Newsworthy Hope for the Future
Dynamic, well-respected scientists
and medical research institutions will be collecting data from those of us who
have tested positive with the FM/a® blood test.
“We seek a potential set of
explanations for why FM patients have their immunological abnormalities and
that is why we have contracted with the genomic facilities at two major
university medical centers(University of Illinois and UCLA) so we utilize their
immense expertise and databases.” (Dr. Bruce Gillis, personal correspondence)
It’s important that you know
this will “Take Time”. This is the first step to help scientists find treatment
that is specific to the cause of fibromyalgia.
“Things Take Time (TTT).
Get this engraved on your watch
crystal or the back of your cell phone.
The FM/a® test “Campaign 250” is
devoted to answering the basic three questions: Do I have it? What caused it?
How do I treat it? If you would like to be one of the 250,0000 participates in
this important research, you first need to have the FM/a® test. Start the
process at http://fmtest.com/ and contact them
if you can’t find answers to any of your questions. They are a wonderful bunch
of folks. And, you can read my blog, FM/a® Blood Test – “How To” and My
Results, which clearly explains my experience.
Learn
more about Celeste’s books at her website or find
links here onCeleste'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.
As
stated in my blog in September of 2015 The
Painful Truth: A Book, a Documentary, a Meeting with Lynn Webster, MD, Dr.
Webster’s message is irresistible. His dedication to writing the book and producing this documentary (with Craig Worth) is a testament to the
spirit and determination he has for people living with pain. He advocates for
awareness of the seriousness of untreated or undertreated pain, suicide and
addiction. (You can view more information at The Painful Truth Documentary website.)
Over
the weekend, I got an email from Dr. Webster and I am so excited to share it
with you.
Dear
friends,
I'd
like to share some exciting news: "The Painful Truth," the
documentary I co-produced with Craig Wirth, was distributed by NETA on March 1
[2017] to all public television stations in the United States. On March 3, it
aired on KENW (Portales, NM) and on WXXI (Rochester, NY), and later this month
it will air in several other states including Georgia and
Montana. I am hopeful that the documentary will air in as most major
cities, though this is a decision that is at the discretion of each local
station.
When
documentaries like this air on public television, it is common for the host
stations to include a discussion with relevant community members. If your local
public station decides to air this documentary and you would be willing to make
yourself available for a panel discussion, I would encourage you to reach out
to your station to offer your participation. It could be a great opportunity to
discuss how important it is to Transform the Way Pain is Perceived, Judged
and Treated as described in the 2011 IOM report Reliving Pain in
America.
Dr.
Webster is building a list of the stations and air dates/times for
the documentary, which will soon be on the documentary's website,
Learn
more about Celeste’s books at her website or find
links here onCeleste'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.
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 realizethe 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."
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.
Learn more about Celeste’s books at her
website or find links here onCeleste'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 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
share buttons to share with others.
In Part Oneand Part Two, we read about the history of medicine, the human instinct to
relieve pain, and the holistic approach. So, what could the
future hold?
In the days and years ahead, we will see information sharing between
pain care providers and patients as a welcome opportunity. We will be partners in investigating new concepts and applications of therapeutic
modalities. Our provider will be the leader, the steering wheel, and the patient
will be the vehicle. Both will work together to keep the chassis from falling
apart and the engine running smoothly.
The
future offers hope. Treatment options that fit within our own moral framework
will be available. When all other options have been exhausted, neither provider
nor patient will be judged for their choice for minimizing pain. We
know that one in seven to ten people will exhibit addiction/abuse behaviors,
one of those could be us, but our providers will be acutely aware of how to
identify risk and resources will be available and affordable to all. Long-term studies on the
effectiveness of opioids, medical marijuana, and other centrally acting agents,
such as antidepressants, and anti-seizure medicines will be available. Providers and patients will be informed and improved
patient function will be the yardstick by which we measure all things.
"Spirituality is a person’s sense of peace, purpose, connection to others, and beliefs about
the meaning of life."
~The
National Cancer Institute
Care plans will include assessment and education for healthy coping
strategies, assessment of our support systems, and our providers will undergo
education for meeting our spiritual needs—theirs and ours. (See Part Two.) Integrative medicine, which includes both traditional and
complementary
medicine, will include therapies such as active release therapy, acupuncture
and ultrasound guided trigger point injection and will be available across the
United States. Physicians will learn how body kinetics and the myofascia play
an important role in chronic pain. And, just like water in a gas tank causes
engine malfunction, providers and patients will understand the effect of nutrition on our general
health, so we can expect referrals to nutritionists when needed. Massage,
acupuncture, acupressure, QiGong, warm water therapy, classes for meditation, biofeedback, and
movement therapies (such as Tai Chi and Yoga) will be front and center. We will be seen as human beings and will be respected for input in our care. Last, but certainly not least, all helpful therapies will be covered by our insurance providers and will be available to everyone, not just the affluent.
Our perceptions will shift from a “healthcare system” to what the Center for Practical Bioethics calls “a learning healthcare system.” Modern informatics
will allow access to our data with the goal of improving outcome, and
benefit/risk analysis will be individualized. As discussed in Part One, we will “look up” and we will no longer
fall into the abyss of usual thinking. All those present in the modern medicine
model will admit we don’t have all the answers and will exhibit a willingness
to open their mind to new possibilities. We will be fearless.
“Leaders are visionaries
with a poorly developed sense of fear
and no concept of the odds against them.
They make the impossible happen.”
~Dr. Robert Jarvik
(Inventor of the first permanent total artificial heart.)
Conclusion:
In
this partnership, we will open our minds and hearts to new
possibilities. Our healthcare provider will lead the movement for patient
centered care by embracing the power of communication, trust, compassion, and
touch. We will work together in learning how the mind affects
the body and we will join hands as facilitators to share the news on this
phenomenon. We will all play a pivotal role in the way pain is perceived, judged, and treated as set forth in the Institute of Medicine report, “Relieving Pain in America.”
What we do today to change our perceptions will affect the future of pain care
for the 100 million Americans who suffer daily.
This
is not the end; it is only the beginning.
~ •
~ • ~ • ~ • ~ • ~
"Adversity is only an obstacle if we fail to see
opportunity."
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