My 50 Years with Chronic Pain

By Carol Hansen, Guest Columnist

I am a 71 year old woman living with chronic pain.  When I was in my 20’s I started having severe migraine headaches, at least two per month.  It was hard to do anything. They lasted at least 3 days, leaving me wiped out!

I also cared for my grandparents in my home until they died. My grandmother also had migraines when she was younger.  She shared with me that when I got older my headaches would go away and she was correct.

I had some aunts that had fibromyalgia, which at that time no one knew what it was.  I knew my grandmother’s pain level was high, because she was on opiates.  Her doctor gave her a high dose so she was hooked on these medications. 

Doctors used to prescribe a lot of pain medication, thinking that was all they could do for pain patients. Even then they did not want to deal with us. I was always afraid of pain medication because I observed my grandmother’s life.  After my grandparents passed away our lives naturally changed.

We enjoyed time with our young family.  Still my migraines were very hard on me and fibromyalgia slowed me down.  Yet I still had bluebirds and was a Sunday school teacher, along with a full schedule helping teachers and caring for my children.

In 1981, I was trying to start the heater in our camper when the camper blew up, leaving me with third degree burns. The company that repaired our camper had left all the gas lines disconnected.  More stress, and we filed a lawsuit.  This added to my migraines and my fibromyalgia was very painful.

In 1983, my wonderful husband died leaving me with teenagers.  My body reacted in what I thought was an unusual way.  I felt as if I couldn’t stay still. I had to be moving all the time and at night sleep didn’t come.  This went on for at least two years, while increasing fibromyalgia pain. 

After my husband died I felt that if I had a business it might help me through the grief.   After much thought I started a small business, it is now 30 years old with multi-layered experiences.  Because of my unique business I was asked by two magazines to write a monthly article which I did. 

My church asked me to lead a group and host a family of 7 immigrants (boat people from Vietnam). I was in charge of them for several years.  As much as I loved the family, I had to use tough love and slowly stopped helping them to let me go and begin their own lives, as families should.  Knowing this family is a wonderful story that added happiness to our lives. I did all this through my pain.

My neck was so bad I was losing the use of my left arm. There was more pain and it was getting harder to deal with my business.  During this time I met a second wonderful man.  We saw each other for 6 years before we married. 

I saw a doctor about my neck pain.  When the camper exploded, I hit the back of my neck on the counter edge.  I didn’t know at first that I had hurt my neck because the burns were so bad.  My neck had a dent in the vertebrae’s and was collecting calcium deposits. Over time I ended up having three surgeries on my neck.  They couldn’t get all the calcium out because it was too close to the spinal cord and I could have been paralyzed.

Right after one of the surgeries I ended up back in the hospital with mononucleosis and hepatitis.  It made healing much harder and the pain became chronic along with fibromyalgia.  I saw a rheumatologist in Seattle.  We tried Lyrica and Cymbalta, but I had terrible side effects. 

I was asked to take part in a University of Washington fibromyalgia study that lasted several months.  I roller skated 4 miles around Green Lake every day. I was in great shape and was doing this through all the pain. I tried biofeedback and swimming twice a week.  I also have a TENS machine, but that only helps while you’re on it. 

I tried everything to help the pain.  My rheumatologist recommended I take oxycodone three times a day.  They helped me but it was not a time release so it would not decrease pain evenly.  When OxyContin became available, my doctor suggested I try it. I now take OxyContin three times a day.  He also gave me the oxycodone for breakthrough pain.  I started this program in the early 1990’s and have been on the same dose ever since, never asking for more or stronger medication.  It helps control about 75% of my pain.  Sometimes I forget to take the medication and I hurt a lot.  This medication is not addicting like the pills my grandmother took.  I am not addicted, I am dependent!

I have had several other surgeries, including two that failed.  One surgery was on my left foot and the doctor left my foot deformed; he is no longer practicing.  In 2013 I had a total knee replacement and it was a complete failure. I have problems going up and down stairs, and it is now my biggest pain area.  I am also diabetic and have osteoarthritis in my hands and hips. 

My pain is very chronic, there is no way to exercise or do other things recommended by the CDC. I’ve already tried them. The pain medication is the only relief I will ever have.

In 2001, we moved from Seattle to northern Idaho.  No doctor there wanted to deal with a new pain patient, so we were traveling 800 miles round trip back to Seattle every 3 months. Then my doctor retired. The doctor that replaced him left for another clinic because he didn’t want to deal with my doctor’s patients.  The doctor that took his place said she would not prescribe pain medication.  I got a letter saying they did not want me as a patient – even though I was a great patient staying with the same doctor for many years. In fact, they kicked out ALL pain patients from that clinic!

I did eventually find a pain clinic near us. So far they are keeping me on the same program as my retired doctor had me on.

The CDC, FDA and the Obama administration are telling doctors to take pain medication away from us. They are lumping pain patients in with addicts and causing horrible problems.  Doctors don't want to deal with us. Whatever happened to "Do No Harm"? 

Carol Hansen lived in Idaho. She invites people to learn more about chronic pain by reading "Opioid Epidemic Myths" and this Petition2Congress.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

When Will the Media Start Telling Our Stories?

By Deborah McDonald, Guest Columnist

The government and other entities in power (FDA, CDC and PROP to name a few) keep passing laws, creating guidelines and scaring the crap out of doctors, because of the opioid epidemic and overdoses that happen when narcotics are taken recreationally or not as prescribed.

The panic and media reports are slowly succeeding in taking narcotic pain control away from those who are in legitimate pain. People in pain are finding it harder and harder to find treatment, and if they do they are increasingly being treated as if they are guilty until proven innocent.

There are pain contracts, extremely costly drug tests, pill counts and monthly doctor visits. Pharmacies that profile patients and refuse to fill legitimate prescriptions, causing sick people to go from pharmacy to pharmacy to try and get their medications. It might not sound like much, but when you are in pain, weak, have trouble walking or driving, on a limited income, disabled, elderly or a veteran, it is time consuming and very costly.

Oh, and don't you dare ever plan a vacation, because if they call you for a pill count and you aren't there in 12-24 hours, you are dropped as a patient, no excuses. Visiting Hawaii on a once in a lifetime vacation? You can prove you're there and not just dodging the call-in, but that doesn't matter. Better hop on a plane ASAP and be there for that pill count.

Faulty drug screen? Chances are you won't even be given the option to retake it, even though urine drug tests have significantly high false positive rates.

This all needs to stop!

I have no pain control, I can't get narcotic pain medication (the only thing that works) and I have a stack of medical records that show my legitimate, unmistakable multiple pain conditions: spinal birth defect, stenosis, nerve compression, significant osteoporosis and arthritis, just to name a few.

This lack of pain control is causing severe high blood pressure and adrenal issues. The stress to my central nervous system is immense. I've been told by two doctors that I am at risk of a heart attack and stroke because of this stress.

DEBORAH MCDONALD

I haven't been posting much publicly about my health issues on my social network. I figure it's my cross to bear and who wants to be around someone who complains all the time, right? But I'm wheelchair bound and essentially bedridden now and something has to give. Not just for me, but for the millions of other Americans who are like me. A life of untreated severe nonstop pain is pure torture and the stress on your system will eventually kill you.

Let me be clear as I share this. I am not looking for sympathy. Sympathy and a cup of coffee gets me… a cup of coffee (my own saying, like it?) but I'm not sure how long I'll be able to keep going without help, as it's 24/7 pain and goes from OMG this hurts to excruciating, and I am begging Johnny to put me out of my misery and all points inbetween.

That's the physical part. I won't even get into the mental issues that come from losing your ability to do and be who you are. When you lose your ability to do the most basic things, like cook, clean, walk, and get deep restorative sleep. The things that others take for granted become the ruler you measure yourself by. Inevitably you can't measure up to that, so you feel like a failure, over and over without a break.

Having adequate pain control helps a person hang on and hang in and helps them salvage a bit of who they were. Nothing takes all the pain away, but a break from it here and there is the Holy Grail to people in pain.

We keep hearing the stories of those who are addicted and take narcotic medications to get high. Congress is even considering a tax on opioid pain medication that would be used to fund treatment for them.

When are they going to start telling our stories? Stories from those of us who need pain medications to have some quality of life? Those who don't take opioids for any type of high?  Where is the panic and media coverage about us? Why are we slipping through the cracks? Why are the suicides not being reported? Is this truly a way for our government to thin the herd?

Face it, disabled people are not a top priority and the government would save a lot of money if we all killed ourselves and quit needing benefits. (Benefit programs that most of us have paid into. I'm just stating a sad truth here.)

And let me be clear on another point. I am not downplaying the needs of those addicted to narcotics. I realize they are dying and need help too. I just wish the pendulum hadn't swung so far and so hard against those who need opioids for any quality of life.

Chronic pain patients are being left to suffer and yes, sometimes die, without the medications we need.

Deborah McDonald suffers from a spinal birth defect, spinal stenosis, arthritis, whiplash injuries and severe osteoporosis caused by a rare vitamin D malabsorption disorder. She lives in Alabama with her family. Before becoming disabled, Deborah owned and operated two boutique inspired second hand stores that centered on an outreach program that helped seniors and families on limited or fixed incomes.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The CDC and DEA Want to Be Your Ghost Doctor

By Lynn Webster, MD, Guest Columnist

It is not uncommon for politicians, celebrities, and other ordinary people to hire a talented writer — who is called a “ghostwriter” — to compose a story or book. Ghostwriters are supposed to write in the author’s words, voice, and style, and they do not take credit for their authorship. In other words, they are the actual writers, but they are as invisible as ghosts.

This concept of a third party — in this case, a ghostwriter — standing in for the author is a collaboration that requires special talents and understanding of the author’s intent. The content that results from the partnership is not intended to be a vehicle to convey the third party’s views.

The ghostwriter’s job is to convince readers that they’re reading the words of the author. In other words, the ghostwriter has to pose as the author so that readers won’t know the difference between the voice of the ghostwriter and the voice of the credited author. It is a mutually rewarding relationship, and both parties agree to it.

There appears to be an analogous relationship developing in the area of pain medicine, but it is not a consensual relationship. Worst of all, nobody — least of all patients — benefits from it.

Determining patients’ medical problems and what the treatment should be for those problems customarily has been within a physician’s wheelhouse. However, lately, it seems as if the Centers for Disease Control and Prevention (CDC) and the Drug Enforcement Administration (DEA) want to sit in the physician’s chair and make decisions regarding treatment. In my opinion, they are usurping physicians’ decision-making responsibilities.

In other words, the CDC and the DEA want to be your ghost doctor.

Like a ghostwriter, a ghost doctor has certain abilities. But, these ghost doctors usually lack physicians’ training and expertise in pain medicine. Traditionally, most people would agree that most physicians have more information and knowledge to make medical decisions about their patients than the CDC or the DEA, but that perception appears to be shifting.

For example, in March of 2016, the CDC released its CDC Guideline for Prescribing Opioids for Chronic Pain. It blamed the opioid epidemic on doctors and condemned them for prescribing opioids for nearly any patient who hadn’t been diagnosed with cancer or a terminal illness. The CDC deemed itself better equipped than doctors to decide how patients with pain should be treated using opioids.

The DEA is the other regulatory agency that is interpreting what is, and what is not, a legitimate medical reason to prescribe an opioid. But they do not list these conditions. Physicians are left to guess what the DEA and their experts consider to be a legitimate medical purpose to prescribe an opioid.

This puts chronic pain sufferers in an impossible situation. Instead of receiving treatment from doctors who know them and care about their needs, patients are now at the mercy of ghost doctors — faceless regulatory agencies that have never met the people they are often condemning to pain, frustration, fear, and hopelessness due to actual doctors’ fear of sanctions if they do not comply with the government views.

A doctor’s first responsibility is to the patient.

But, due to pressures by law enforcement and the new CDC guidelines, doctors cannot fulfill this responsibility.

As Orlando, Florida’s WESH-TV reported, pharmacies in Florida were forced to deny medication to patients with legitimate prescriptions beginning in 2010 when the state decided it was necessary to address the opioid epidemic. Pharmacies blamed the DEA when patients couldn’t get the painkillers they needed, and the DEA blamed the pharmacies.

And, in the meantime, patients suffered.

Even Pam Bondi, Florida’s attorney general at the time, admits that the crackdown on painkillers went too far. But Jeff Walsh — DEA assistant special agent in charge of Central Florida — disagrees. “It’s tragic, but it’s an issue between the patient and the pharmacist, not the DEA,” he opines.

In other words, the DEA doesn’t understand how they have become a ghost doctor. I suspect neither does the CDC.

But the reality is that both the DEA and CDC are directly influencing physician decision making. Their words and voices are replacing those of physicians.

Perhaps that is not all bad. Regulation has its place in medicine. However, it isn’t all good, either. Guidelines and standards of care must be established by practitioners who understand the needs of their patients. There cannot be a formulaic approach to care, because one pain treatment will not work for all pain patients. That means ghost doctors can’t design treatment plans. Trained doctors must do that.

A ghostwriter may be able to manifest the voice of an author, but a ghost doctor can never replace the personal relationship and decision-making abilities of a personal physician. Ghost doctors can never successfully substitute for trained physicians.

Lynn R. Webster, MD, is past President of the American Academy of Pain Medicine, Vice President of scientific affairs at PRA Health Sciences, and the author of “The Painful Truth.”

This column is republished with permission from Dr. Webster’s blog.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

How Neuroinflammation Causes Chronic Pain

Barby Ingle, Columnist

What is neuroinflammation and why does it cause severe burning pain even when there seems to be no injury?

Let me explain it as simply as I can. Say you sprain your ankle. Your ankle then hurts, swells, discolors, and the pain limits use. The swelling occurs because of “healing” chemicals that move into the affected area and work to repair any damage.

In a typical person, this process is successful and the healing chemicals trigger another set of chemicals to take the healing chemicals away. The swelling and discoloration go away and the person doesn’t have any additional issues healing from that trauma.

But sometimes the healing process doesn’t work correctly and the neuroinflammation becomes chronic, activating glial cells in our spine and brain. This poor healing process changes your spine and brain in ways that essentially leave your pain signals turned on.  

Glial cells are small nerve cell that fire off about every two minutes looking for any threats to the body. This is part of your fight or flight system. They are non-neuronal cells that maintain homeostasis, form myelin, and provide support and protection for the brain's neurons. Glia is a Greek word meaning glue.

In the human brain, there is roughly one glia for every neuron, with a ratio of about two neurons for every three glia in the cerebral gray matter, according to the research article, “Equal Numbers of Neuronal and Nonneuronal Cells Make the Human Brain an Isometrically Scaled-Up Primate Brain.”

UNIVERSITY OF MANCHESTER

The four main functions of glial cells are to surround neurons and hold them in place; supply nutrients and oxygen to neurons; insulate one neuron from another; and to destroy pathogens and remove dead neurons. They also modulate neurotransmission, according to the “D-amino acids in the brain: d-serine in neurotransmission and neurodegeneration" research paper. Therefore, glia is a lot more than just the “glue” of the nervous system.

Why should we pay attention to glia activated neuroinflammation? There needs to be much more research into this area and ways to control glial activation. What else activates glia? What deactivates it?

At a medical conference in 2008, I learned how neuroinflammation primes the nervous system in chronic pain patients. Let’s say that someone slaps you unexpectedly. Your body reacts with a fight or flight response. Then down the road a few months, maybe a year, someone slaps you again. Now your fight or flight response is on guard. Instead of firing every two minutes or so, the glial are on full time. This is a signal to your healing process that something is wrong. Your body wants to be ready to protect you in case you are slapped again.

The second “slap” can be any kind of any trauma: a torn ligament, broken bone or even a paper cut. It can be just as big or even smaller than the first slap. The first slap causes the priming, the second one confirms the risk (even if there is none), and now the body’s protection system is “on” just in case.

Looking at my case, I had a tear in two of my knee ligaments in 2001 and underwent surgery. I bounced back in a very short time and continued on with my athletic activities as a head Division IA collegiate cheerleading and dance coach.

About a year later, I was in a minor auto accident and had a brachia plexus injury which devastated my life. The harder I fought it, the worse I got physically. Was it priming? Was I exposed to something that set off the neuroinflammation process?

Fortunately, years later I was able to deactivate my glia and go into remission because of infusion therapy. That helped me to understand the importance of controlling glia activation and neuroinflammation.

I hope by sharing my story it starts more conversations to get medical practices to catch up to the science that already exists. Is deactivating the glia a cure? No, but it does go a long way in assisting with chronic pain management.

It got me from wheels to walking. And now that I am walking, I will keep talking until more lives are changed for the better. 

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

A Pain Poem: Configurations of Mourning

“Configurations of Mourning”

By Angelika Byczkowski

I mourn

Passion confined,

Freedom now curtailed,

Crammed into an angry knot.

No regrets for having lived to excess.

Desire's wide and glorious arc,

Stunted and diminished,

Trapped inside

My pain.
 

I mourn Desire's wide and glorious arc,

Passion confined, Stunted and diminished,

Freedom now curtailed, Trapped inside

My pain. Crammed into an angry knot.

No regrets for having lived to excess.
 

I mourn My pain.

Passion confined, Trapped inside,

Freedom now curtailed, Stunted and diminished

Desire's wide and glorious arc, Crammed into an angry knot.

No regrets for having lived to excess.
 

My pain,

I mourn

Trapped inside

Passion confined,

Stunted and diminished,

Freedom now curtailed,

Desire's wide and glorious arc,

Crammed into an angry knot.

No regrets for having lived to excess.

Angelika Byczkowski suffers from Ehlers-Danlos Syndrome (EDS) and fibromyalgia. Until she was disabled by progressive pain and fatigue, Angelika was a high tech IT maven at Apple and Yahoo. She lives in California’s Santa Cruz Mountains with her husband and various 4-legged kids.

When pain isn't keeping her flat on her back, she spends her limited energy researching and writing about chronic pain, EDS, and fibromyalgia at EDS Info. Angelika’s essays and poems have been published in The New York Times and several healthcare blogs.

Pain News Network invites other readers to share their stories (and poems) with us. Send them to:  editor@PainNewsNetwork.org. 

AMA Defends Dropping Pain as Vital Sign

(Editor’s note: Last week we published a story on the American Medical Association’s decision to support the removal of pain as a “fifth vital sign” in professional medical standards – a move that some believe will make it harder for pain patients to be properly diagnosed and treated. Patrice Harris, MD, Chair of the AMA’s Board of Trustees, sent us the following letter objecting to how the AMA’s vital sign policy was characterized by PNN.)

By Patrice A. Harris, MD, Guest Columnist

The American Medical Association (AMA) unequivocally supports a patient’s right to receive the highest level of compassionate, comprehensive care for his or her pain.  It is unfortunate that the recent actions at the AMA House of Delegates were painted as anti-patient (“AMA Drops Pain as Vital Sign”), when the actual debate was focused entirely on how to ensure physicians have the necessary tools to deliver optimal care to our patients. 

Reducing the stigma of pain and advocating for comprehensive pain care are key recommendations from the AMA Task Force to Reduce Opioid Abuse – part of our multifactorial plan to ensure that balanced policies are in place to ensure patient’s access to care and promote the best evidence-based pain management practices, while reversing the nation’s opioid misuse, diversion, overdose and death epidemic.

When called for by a physician’s clinical judgment, this includes the use of opioid analgesics as a potential component of individual treatment plans.

Contrary to the claims in the article, however, our new policies complement and further our longstanding advocacy that emphasize the importance of treating each patient as an individual and tailoring care for that individual.

PATRICE HARRIS, MD

Pain satisfaction surveys, physician satisfaction surveys, even the Joint Commission’s Pain Care standards have not been shown to result in comprehensive improvements in pain treatment or protocols, or improved outcomes, but are clearly motivating forces for opioid prescribing. 

Patients with chronic pain deserve to benefit from the research and scientific approaches as envisioned by the National Pain Strategy, which the AMA strongly supports.  Not a single physician said, suggested, or hinted that anyone should “stop asking patients about their pain” as your recent article suggested.  Perpetrating this baseless, stigmatizing claim does your readers a tremendous disservice and does not reflect the opinions or practice of the nation’s physicians. 

We are well-aware that efforts to reduce the supply of opioids in the United States, without due consideration for unintended consequences and impact on chronic pain patients, have taken firm hold, and that many such patients have experienced disruption in their care and suffered. Many physicians at the AMA meeting decried the stigma that their patients experience. Others highlighted the audits and investigations by law enforcement among their colleagues.  And many noted the importance of treating all physical, psychosocial and behavioral aspects of pain. 

Furthermore, all discussed the importance of effective, evidence-based care, including the fact that vital signs are those that can be objectively measured and quantified. Identifying, treating and managing pain is central to medical practice, but it is not a readily quantifiable physiologic vital sign.  

We recognize that the pendulum has clearly swung too far. We know that the stigma of pain and opioid use has become pervasive, and we believe physicians and patient advocates must work together to restore balance.  But we can’t ignore the fear and stigma that pervades our society – and affects physicians and other health care professionals. We see (and experience) the increased scrutiny by law enforcement and government regulators.

In response, some physicians no longer treat chronic pain or prescribe opioids. But there are committed physicians in every city, town and state who provide the type of compassionate care that our patients need and deserve.  There are many examples of physicians doing all that is necessary to provide the type of complex, thoughtful care that chronic pain patients need. That is the vision we have for pain care in the United States.

We will, always stand up and speak out in support of patients who are in pain. We have done this countless times in Congress, with our state and specialty society colleagues, in front of the National Association of Counties, National Conference of Insurance Legislators, National Governors Association and many other leading organizations. 

We know all too well that pain is the number one reason patients come to us. We will continue to seek all avenues to provide the care our patients need – whether pharmacologic or non-pharmacologic – and insist that insurers cover the multimodal therapies required for effective management of chronic pain. 

The nation’s opioid misuse, overdose and death epidemic has harmed far too many, and the AMA is committed to working to ensure that patients with pain are not among those who must now become innocent bystanders in the regulatory response to this public health epidemic. To suggest anything less is to ignore the body of our advocacy and the mission that is central to our proud history.

Patrice A. Harris, MD, is Chair of the AMA Board of Trustees and Chair of the AMA’s Task Force to Reduce Opioid Abuse. A practicing psychiatrist based in Atlanta, Dr. Harris has served on the board of the American Psychiatric Association, as President of the Georgia Psychiatric Physicians Association and as Director of Health Services for Fulton County, GA.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Protestors: 5 Simple Ways to Stand Up

By Pat Akerberg, Columnist

It frustrates me that there’s such a huge gap between what I’d like to do and what I can actually do to protest how pain care has gone amok. 

The truth is I can’t talk without triggering unmerciful pain.  I can’t make lots of phone calls or present to audiences or groups anymore.  I can’t march, run or walk for any distance now.  Thanks to debilitating chronic pain, I can’t reliably commit my energies to much more than the daily challenges I face. 

Maybe you’re in the same place too? 

As discouraged underdogs, we want to change the lopsided fervor that’s trumping our critical need for safe and humane advancements in pain care.

I wish we could lead the charge, but in reality our compromised bodies often can’t keep up with what that requires. Starting from scratch is tempting, but that’s at cross-purposes with our limited capacities.    

Then I remember “the butterfly effect,” born out of physics and chaos theory.  It refers to a cumulatively large effect that a very small force may produce in a larger system over a period of time.  It postulates how the fluttering of a butterfly's wings in one part of the world may set off currents that will grow into a hurricane in another part of it.

We can’t predict or know when there will be enough pressure, conspiring events or cumulative conditions to bring about the butterfly effect for us.  But progress requires active involvement.

We have strength in numbers, but some patient advocates have called out pain sufferers, questioning where our support and voices of protest have been thus far.  That’s a fairly untapped opportunity.

If we want pain reform, it will take a critical mass of us calling for it.  Pragmatically, we can help build momentum and heighten the pressure for change quicker by supporting and working with current pain advocacy groups.

We have literally dozens of advocacy organizations, but ironically they lack organization.  Each represents a piece of the broader issue -- yet their efforts haven’t coalesced enough around a single goal or goals to gain substantial traction.

If you’re wondering what part you can play or where to put your limited energies, let’s look at some current opportunities.

Step #1

The oldest patient advocacy group, the American Chronic Pain Association, had a seat on a CDC advisory committee when the opioid prescribing guidelines were created.  But somehow that opportunity for active influence was reduced to a complicit check the box activity.

What can we do to call for better representation from such pain advocacy groups?  The well articulated comments that we write among ourselves could be leveraged to that end.  Copy, paste and send them to all national pain advocacy groups, starting with ACPA. Many of these organizations and their e-mail addresses are available by clicking here.  

Get involved.  Raise your concerns.  Urge all of their leaders to rally behind one unifying message for impact.  Ask them to recruit a spokesperson to give pain a face/voice (celebrity, athlete, or public/professional figure), devise ramped-up media and funding strategies, and enlist savvy lobbyists and lawyers.

If each of us would send out 5 letters, e-mails, or make 5 phone calls a week to a different advocacy group each week, we’d reach them all in just 8 weeks. 

Step #2

Have you heard of the LifeBOAT Act? Its legislation that would tax opioid pain medications, introduced by Sen. Joe Manchin (D) of West Virginia, and co-sponsored by Democratic Senators Amy Klobuchar of Minnesota, Jeanne Shaheen of New Hampshire, Heidi Heitkamp of North Dakota, and Tammy Baldwin of Wisconsin, along with one independent, Angus King of Maine.

The legislation is a reverse Robin Hood version of robbery.  Lacking conscience, the LifeBOAT Act would take money from pain patients by punishing them for their medical misfortune.  In turn, an estimated $2 billion of our tax dollars would be given to favored addiction treatment centers to treat opioid addicts.

If you feel strongly about the injustice of this tax, email or call the senators’ offices with your reasoned, opposing comments:

• www.http://Manchin.senate.gov       (202) 224-3954
• www.http://Klobuchar.senate.gov    (202) 224-3244
• www.http://Shaheen.senate.gov      (202) 224-2841
• www.http://Heitkamp.senate.gov     (202) 224-2043
• www.http://Baldwin.senate.gov        (202) 224-5653
• www.http://King.senate.gov              (202) 224-5344

Step #3

The American Medical Association (AMA) recently decided to pass the hot potato by voting in favor of efforts to remove pain as a vital sign in professional medical standards, as well as disconnecting patient satisfaction scores from questions involving pain care in hospitals.

If this setback for pain sufferers pushes your buttons, you can call the AMA at (800) 621-8335 and let them know how you fell.

Step #4

September is National Pain Month, a good time to contact your local media and get them to cover our side of the pain story.  Press kits are readily available from some advocacy groups for this purpose.

Step #5

Our small efforts can quicken the overall cumulative effect, while giving us a personal and purposeful outlet.  A few more examples include:

• Join advocacy and social media groups (like Facebook) to understand their missions and volunteer for their initiatives
• Urge advocacy groups to get more media coverage of our side of the pain/opioid story
• Endorsing petitions sent out on our behalf
• Spreading the word and soliciting the help of family and friends

The Scottish writer W. H. Murray wrote this about the power of commitment: 

“Until one is committed, there is hesitancy, the chance to draw back, always ineffectiveness. Concerning all acts of initiative (and creation) there is one elementary truth, the ignorance of which kills countless ideas and splendid plans: that the moment one definitely commits oneself, then Providence moves too. All sorts of things occur to help one that would never otherwise have occurred.”

By making a personal commitment on some level, each of us can contribute in ways that our physical limitations will allow. 

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Care Shouldn’t Be Political Theater

By Richard Oberg, MD, Guest Columnist

The current hysteria over opioid pain medication is, without a doubt, the most unbelievable and difficult situation for patients I've ever seen in my 30 years of practice. With an increasing number of deaths due to overdose, the message has become that opioid medication is the problem. 

Healthy people, including healthy physicians, don't seem to believe chronic pain really exists to the degree that it does. Add in media hysteria with gross misrepresentation of the facts, often-cited CDC propaganda, and you have a recipe for disaster: addiction models applied to chronic pain patients.

Everyone's favorite defense mechanism – projection -- is overused constantly and many healthy people really think if they had chronic pain they'd somehow handle it differently or “beat it” which is nonsense.

Empathy is not a learned skill, nor is it widely prevalent in the population, including the majority of physicians. You feel it every time you see that look of disbelief from anyone, including physicians, regarding your chronic painful illness. Skepticism overrides compassion.  This attitude in the current climate has led to a crisis for patients.

At age 39, before I was diagnosed with psoriatic arthritis and eventually late stage complications of spondylitis and neuropathy, I was a multi-mile runner and very active member of our large hospital staff. Then suddenly every step was like walking on broken glass, aching everywhere with flu-like symptoms, and getting maybe two hours of sleep per night.

I saw multiple colleagues who'd give me a pat on the back and tell me to “hang in there” as I was heading for a meltdown.  Instead of a rheumatologist, I was sent to a psychiatrist.  Even after I got a definitive diagnosis, everyone still just chose to ignore it.

Sound familiar?

RICHARD OBERG, MD

I finally found an “old school” internist, one of the few in our area willing to treat chronic pain, who convinced me to try opioid medication cautiously, despite my reservations.  Like many people, I thought they'd make me fuzzy headed (bad for a diagnostic pathologist spending 8 hours under a microscope), but the opposite happened. Suddenly I was back at a tolerable pain level and able to sleep at night again. I’ll never forget how compassionate he was.

Biologic drugs such as Enbrel, which were new then, helped a lot for maybe 12 years. Over time they can become less effective for many patients. I became severely allergic to Remicade (anaphylactic reaction) and all other biologic/systemic medications also ceased to do anything, including Rituxan, which is for rheumatoid arthritis and B-cell lymphoma. I was desperate to continue working and was only able to with opioid medication.

Opioid Propaganda

So here's our dilemma as pain patients: we have a major federal agency (CDC) peddling “addictionologist” propaganda on a massive scale and investigative journalism no longer exists. The news media is no longer the fourth branch of government, but merely a vehicle for their propaganda.

Our physicians, despite being the highest paid in the world in the most expensive healthcare system in the world, have signed onto this -- not wanting any scrutiny whatsoever from state or federal regulators. They won't script in these “militarized” situations, and are either risk averse or co-dependent (the latter is why they want to drop the pain scale). Most are going along with the CDC because they don't want the extra trouble and have abandoned patient responsibility entirely, going for the low hanging fruit of more routine healthcare issues instead.

We have a supply and demand situation working against us with too few providers, an abundance of chronic pain patients, and pills that aren't as profitable as procedures. This varies from state to state and even within states, but is rapidly spreading. Physicians obviously caused part of the problem by over-prescribing, but they have the money and power, and are now just walking away from it all. There is a deafening silence from physicians, even when they know their patients are being abused.

In many states, like Tennessee where I live, physicians run everything. State officials passed tort reform, so lawyers won't take medical cases anymore (we tried and know firsthand).  Physicians own our state malpractice insurer, State Volunteer Mutual, which brags every year about malpractice premium refunds due to a decreased numbers of lawsuits. It's not because our state has a phenomenal group of physicians, it's just that the bar for a lawsuit is so high (like death of someone young) there are very few of them.

Within relatively few years (partly due to addictionologists like Dr. Andrew Kolodny having an outsized voice at the CDC) the conversation went from the “epidemic” of overdose deaths (which it never really was) to “opioids don't work for chronic pain” -- despite the fact that there are no good studies to support that because they really haven't been done.

They just say it and the news media repeats it, much like Dr. Sanjay Gupta, who stated on CNN’s “Prescription Addiction: Made in the USA” that overdoses were the #1 cause of preventable deaths in the Unites States. 

Sorry Sanjay, not even close. The CDC’s own statistics state that smoking and alcohol are the leading causes, with about 480,000 people dying every year – 25 times higher than the alleged 19,000 dying from prescription opioid medications.

How does this blatant propaganda get on CNN and what makes Sanjay Gupta an expert?

The ridiculous Consumer Reports cover story, The Dangers of Painkillers, also misused information supplied by the CDC. I've had a running email conversation with someone there for over a year asking why the bogus misuse of data - and got no answers of course.

Perhaps one of the most abominable statistical misuses by the CDC is confirmation bias, where they cherry pick data to “confirm” what they want to peddle, while ignoring other data, like the vast majority of pain patients doing well with opioid medication and most not having addiction issues.

Their argument simply doesn't work. In the 1990’s, the first decade of “massive” opioid prescribing that media outlets love to cite, there was no similar increase in complications caused by the number of “highly addictive” pills being prescribed. Then we had the 2008 financial meltdown, society changed, drug addiction became a prominent issue, and suddenly people were dying from too many pills.

Finally, the artificial breakdown of “cancer” pain vs. “non-cancer” pain is complete nonsense and always has been. The final common denominator of pain is pain, and cancer is merely one of many etiologies that can cause it.

Incidentally, the word “cancer” is pretty meaningless, especially to a pathologist like me. Large numbers of physicians and virtually all lay people have little understanding of the pathophysiologic processes pathologists are trained to understand.  Most things called “cancer” aren’t chronically painful and many autoimmune diseases can be much more painful than cancer.

Ironically, as cancer treatments have become better (such as those for breast cancer) and with longer survival times, many cancer patients are developing chronic pain conditions that have nothing to do with their cancer.

Do they get special treatment even if they have a good long-term prognosis?

Richard Oberg, MD, is disabled by psoriatic arthritis and no longer practices medicine. Dr. Oberg receives no funding from pharmaceutical manufacturers. 

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Tips on Living with POTS

By Ellen Lenox Smith, Columnist

I suddenly had my life come to a halt when “POTS” hit me in my sixties. Some of you may not be familiar with what that is.

Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia, a condition that affects the nervous system, causing light-headedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and sometimes even death.

According to Dysautonomia International,  between as many as three million Americans have some form of dysautonomia, and over 70 million around the world.

I had always lived with low blood pressure, but as the instability of my neck, due to Ehlers-Danlos syndrome progressed, I suddenly felt that standing or even just sitting up in bed might cause me to faint.

I reported the symptoms to my cardiologist, who worked with me on finding treatments, but that journey was not a simple one.

The first thing he encouraged me to do was to salt my food, to keep my blood pressure elevated. When that was not enough, he prescribed salt tablets.

Suddenly, I started gaining weight. There was no evidence of swelling in the extremities, the weight retention for me landed in my chest. However, I continued to faint and feel horrible.  

I reported back to the doctor and was encouraged to add more salt. I got scared when I gained another nine pounds and decided to stop taking salt, assuming that was the culprit. Soon after, I passed out, was sent to the hospital, and diagnosed with congestive heart failure.

I came home after three days in the hospital and proceeded to melt out of my husband’s arms, hearing both legs snap as I fell to the ground. I woke up with terrible leg pain and now had to face two micro-fractures from the fall.  

When my cardiologist was contacted, he mentioned a medication that he thought he had prescribed for me, but I was certain he not ordered anything besides the salt. I admired his honesty in when he later admitted his mistake. He had confused me with another patient. Once I started the medication he intended for me to take, life started to return to me.

I wanted to share my story in hopes that a reader with POTS might find these tips helpful. It’s such a debilitating condition that I hate to think of anyone else suffering unnecessarily.

Here is what has helped to get my life back and blood pressure to almost normal:

1)  Sleep elevated at a 30 degree angle. You want to elevate the head of your bed under the frame, not just sleep with pillows to elevate. If you need to travel, you can take plastic containers often used by college students to elevate their beds to create storage. I use two containers on each side of the head.

2)  Keep hydrated. Drink plenty of water daily.

3)  Exercise to keep your circulation strong.

4)  My magic medication turned out to be Midodrine HCL, 5 MG tablets. Once I started taking them three times a day, I started to live with normal blood pressure! This specific medication may not be suitable for you, but there are other medications that may help. You should consult with a doctor before trying any of them.

I hope this might provide you with useful strategies to cope with POTS.  Don’t settle with being stuck in bed. Although finding the correct combination of medication takes time, I hope that it will bring some normalcy to your life.

Ellen Lenox Smith suffers from Ehlers Danlos syndrome and sarcoidosis. Ellen and her husband Stuart live in Rhode Island. They are co-directors for medical marijuana advocacy for the U.S. Pain Foundation and serve as board members for the Rhode Island Patient Advocacy Coalition.

For more information about medical marijuana, visit their website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

We Are Not Mad Junkies

By Christopher Horton, Guest Columnist

I'm 57, Australian, and a member of the chronically persecuted pain sufferer's club.

My membership came with an accident during a sea rescue. I was a rescue captain for 15 years, got smashed up at sea and have had 6 laminectomies. My legs were paralyzed at first, but after several surgeries I am able to walk again, but tough going. I've had enough surgery to be frightened of anymore.

Once upon a time I thought I was immortal. I have surfed 20 foot high waves and could hold my breath for nearly 5 minutes. I was also a truck and heavy machinery mechanic, trawler fisherman, logging engineer, and rode motor bikes. Now some days my motivation is very low.

I was well known for what I did by my local doctor, but time goes by and inevitably he moved on and new doctors had to be found.

At one time I took Physeptone (methadone) with morphine, but one day due to the refusal of yet another new doctor because of me moving town, the morphine was stopped. 

It’s a crazy world where you hear the doctors say do no harm and are afraid to help us, but bend over backwards for substance abuse patients. The same problems exist over and over, even with pain specialists I have needed to see to get approval for continued supplies of medications. I just deal with more than usual pain and no problem with addiction issues.

CHRISTOPHER HORTON

My neck gets this locked up sensation, a click and then I feel faint, headache, back ache and blood pressure sky rockets so high my doctor gets this strange look on his face. Dreadful medications that have other physical effects. All these things and if another surgery could help, I don't know if I could, it scares me. I shudder at the thought of it and getting older.

I don't talk about this much it's been a long road. I'm lucky. I’ve been married for 40 years to a registered nurse. She's seen everything in her career and comes with me when I see doctors. She knows how to tell them what to do for me.

I agree 100% about abstaining from addiction but with chronic pain it becomes part of the dilemma. For the record I take no more medication now than I ever have, choosing to put up with some discomfort. I have no choice if I want to do things and not suffer too much.  I hope the medical profession can get over the stigma other people prescribe upon us. 

We are not mad junkies, just people trying to survive.

Christopher Horton lives in New South Wales, Australia.

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Companion: How to Release Pain

By Sarah Anne Shockley, Columnist

In all the discussions about pain medications, various approaches to healing and alternative treatments, we don’t want to overlook a key aspect of the nature of pain.

Chronic pain is a messenger. It is here because it has something to say.

Giving pain a voice helps it, in incremental stages, to complete, release and move on.

What does it mean to give pain a voice? You may already be familiar with journaling and finding someone to tell your pain story as ways to relieve the emotional ramifications of living with chronic pain. They are excellent and I highly recommend them, but that’s not what I’m talking about here.

Rather than expressing how you feel about pain, I recommend finding ways to let pain express itself. Think of it as allowing the part of you that is experiencing physical pain to express from within the pain and as the pain.

For example: the next time you decide to journal, instead of writing about your feelings and experiences, try taking a deep breath and stepping into the pain.

I know, at first you may think, yuck, why would I step into my pain? It’s already hard enough to live with it. But bear with me.

From the experience of being within the pain, begin to write what pain wants to say. Write as if you are the pain speaking. Write about what pain feels like to be in your body, what pain wants, and what pain is trying to accomplish by being there. Don’t try to figure this out in your head. Just go into a slightly altered state of consciousness and let the words flow, even if they seem like nonsense at first.

Ask your pain questions, and let it respond. Who are you? What are you? What are you doing in my body? What do you really want? How can I help? How can I soothe? How can I heal?

If it’s difficult to step out of your thinking mind and you find yourself trying too hard to come up with answers for pain, try writing with your non-dominant hand.

The first time you express yourself as pain may feel a little strange or silly, and you may come up blank at first. Just be patient. Pain isn’t used to being listened to in this way. It might take a moment for it to register that you actually want to hear what it has to say.

Experiment with other ways to let pain express too.  Instead of journaling, you can try speaking for pain. Designate a chair in the room as pain’s chair for a moment. Then go sit in it and speak into the room as pain (or do this from bed if you aren’t mobile right now). Just let the words flow.

Pain may surprise you. It may express as very angry about being stifled all the time. Or very tender. Or confused. Or incredibly sad.

Don’t try to analyze it while it’s happening. Just let pain express as pain wants to, however that is. Right now, even though pain feels like a nasty invader, it’s living in your body and it’s a part of your experience that needs to be heard. It’s part of you expressing as pain.

Another way to express pain is to use your voice to express pain as a sound. You might want to wait until you’re alone for this one.

Again, take a breath and go into the experience of pain in your body, and then begin to hum from that place. Experiment with very high and very low pitches. Let the hum express the sound of pain. Then, if you’re feeling adventurous, let the humming morph into other sounds: moans, groans, high pitched whines, sobs, sighs -- whatever sound wants to come from the pain in your body.

It’s most freeing to just let the sounds come out in whatever form they want to take, whether loud or soft. If you’re self conscious or there are others in the house you don’t want to disturb, you can make the sounds into a pillow. Just make sure you’re listening. You are the most important person to hear the sounds of your own pain. It is a way of witnessing, validating, and releasing the pain you’re in.

Do this for as long as you want (or until the dog starts howling). If you’re musically inclined, you might want to make up a song of lament or a song of freedom. Give pain the stage for a few moments.

This may strike you as naively over simplified, but I have found throughout my pain journey that the most potent remedies for ongoing pain are very straightforward and simple. Rest often. Reduce stress and stay as calm as possible. Release held or restricted breath and allow its life-giving and healing force to move more freely through you body. And give pain a voice.

Remember, probably no single thing you do to heal, soothe, express or release your pain is going to be the whole story of your healing. Chronic pain is multi-leveled and complex. Yet all of the simple, yet profound practices we put into effect on a daily basis have a positive cumulative effect. I can testify to that.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The Media’s Biased Reporting on Opioids

By Lynn Webster, MD, Guest Columnist

Have you heard the news about hyperalgesia? “This is the idea that opioid medication, instead of calming pain, might actually make pain worse,” says Stephen Martin, MD, EdM, an Associate Professor of Family Medicine and Community Health at the University of Massachusetts Medical School, who wrote a guest post for HealthNewsReview.

In his post, he points out that media stories such as these greatly worry him:

• Denver Post: CU Boulder study: Narcotic painkillers cause chronic pain,
• FOX News: Opioids may prolong chronic pain, study suggests,
• Washington Post: Opioid paradox: Could morphine use hurt as much as it helps by prolonging chronic pain?
• Forbes: Prescription painkillers may worsen and lengthen chronic pain

Dr. Martin agonizes over such biased media reporting because, like me, his greatest concern is the well-being of patients. He worries that reports like these about opioids could adversely affect patients.

In conjunction with the new CDC Guidelines, these reports may increase anxiety among some patients who are able to function with their medications but now, with good reason, they may fear that their access to painkillers will be tapered or discontinued “for their own good,” because the medication might “cause addiction,” or — and this is a twist the media has recently picked up on — because the opioids could “increase pain.”

As Dr. Martin points out, “The study [the media is referencing] involved rats that had sutures tied around their sciatic nerves. The sciatic nerve was tied and the animals were left in pain for 10 days. Then, the researchers administered morphine directly to spinal cords of these rodents for 5 days.”

He concludes, “The next time a patient of mine becomes a rat, has its sciatic nerve constricted with sutures, and asks for 5 days of morphine near its spinal cord 10 days later, maybe I’ll take another look at this study. In the meantime, I’ll tell my patients to ignore the unbalanced news coverage that the research spawned. I am not saying that hyperalgesia doesn’t occur, but I don’t think it is as evident as suggested by this rat study.”

“Urgent Opioid Public Announcement!” ~ Dr. Drew Pinsky  

Then there’s Dr. Drew Pinsky‘s “urgent” public service announcement,” addressing the effects of rampant opioid addiction that has already claimed the lives of countless people across the world.” You can see it here.

The real shame is that you probably already have seen it because, as a TV personality, Dr. Drew has name recognition that encourages viewers and fans to tune in to hear his latest messages. They see him on television shows that feature his name as part of the title, and they trust him.

So when he makes a statement such as, “The United States represents 5% of the world’s population, and yet we consume 80% of the pain medication – medicine that was not designed to be used for longer than 2 weeks,” viewers tend to think that there must be something wrong with the fact that the U.S. prescribes such a high percentage of the medication.

What viewers must consider is this: there are many reasons why the U.S. has 5% of world population and consumes 80% of the opioids. The chief reason among them is people in most other areas of the world do not have access to opioids and die in tremendous pain:

• There are billions of humans outside the U.S. who are in daily agonizing pain, many of whom can’t get any opioids to ease the pain from their cancers.
• Even if other parts of world would provide opioids for only hospice and cancer patients, and for no other reasons, the U.S. would not consume anything close to 80% of the world’s opioids.

U.S.-based physicians may overprescribe opioids to some people, but clearly, most people in the world do not receive the benefit of opioid therapy to mitigate their suffering when they’re dying. Providing relief from intractable non cancer-related pain is not even a consideration in many other countries for economic reasons.

I hope Dr. Drew is not suggesting we move toward that position in the U.S. I refuse to believe he feels it is acceptable for hospice and cancer patients to die in excruciating pain. Dr Drew must believe that unbearable pain needs to be treated, even with opioids if no other treatment is effective.

As a celebrity journalist as well as a medical doctor, Dr. Drew has more responsibility to show leadership than others. This requires that he not promulgate spurious theories and fuel hysteria. I’d say his “urgent public service announcement” is particularly damaging  because a trusted public figure should know better than to record a message of hyperbole that could do harm.

Biased Opioid Reporting Makes for Compelling Headlines

Since media consumers already fear opioids (with good reason, especially in the wake of the opioid-related death of pop star Prince and other high profile individuals), it’s tempting for journalists to tell viewers and readers what it expects to hear, wants to hear, or most fears hearing.

So media outlets’ ratings and advertising rates increase as they feed half-truths and out-of-context headlines to the public.

Sometimes, I wonder whether the media understands the harm that its actions can cause. I am sure Dr. Pinsky, as a physician, would never want to inadvertently contribute to misinformation. Unfortunately, his public service announcement may do just that. It could hurt, rather than help, the cause that we share: to help patients.

Lynn R. Webster, MD, is past President of the American Academy of Pain Medicine, Vice President of scientific affairs at PRA Health Sciences, and the author of “The Painful Truth.”

This column is republished with permission from Dr. Webster’s blog.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Why Doctors Don’t Do What Works

By Barby Ingle, Columnist

Let’s examine infusion therapies. There are multiple types, including intravenous ketamine, plasma, stem cell, immunoglobulin and lidocaine.

I have tried many of these and know from personal experience that they can work. I have also been by the side of friends who have undergone infusions with great success, including some who have gone into remission.

Infusion therapy is being performed for patients with all kinds of neuropathy conditions and it helps many recipients. It is just hard to find a doctor who will perform infusions for anything outside of IV-chemotherapy for cancer patients. Why?

Right off the bat, let’s consider costs. In the case of intravenous immunoglobulin, it is very expensive to make, so insurance companies fight it a lot and that discourages doctors from offering it.

IV-lidocaine offers some relief, but is short lasting. In the case of IV-ketamine, it is an inexpensive drug and insurance companies are covering it in many cases, depending on documentation and the protocol being used.

I know that many doctors are underpaid. They are getting cutback by insurance companies and on treatment reimbursements with Medicare. Malpractice insurance rates are very high and many doctors still have thousands of dollars in student loans to pay. Those that have their own practice make less because of the overhead costs of location and staffing.

As a former business owner, I see the valid points the doctors are making. As a patient, I wish I could fix these reasons so that more patients could be helped.

Since learning about IV therapies myself back in 2007, I started asking around for names of doctors who are performing them as viable treatment option for chronic pain diseases. What I found was that the list was very small. I started asking questions of pain doctors specifically. I did not do this as “patient Barby,” but as director of the International Pain Foundation.

Some of these doctors have seen me over the past 10 years go from “wheels to heels.” They cannot believe their eyes when they see me now. Yet they still give reasons and obstacles for not wanting to offer infusion treatments.

Many have very small offices. Even at pain management and surgical facilities, the patient takes up a spot in the recovery room or infusion room for half a day. That becomes prohibitive for doctors to deal with because it cuts down the number of patients they can treat and the amount of money they can make.

In medical school, doctors have to choose a specialty. They get general studies that include a little info on this and a little on that, but unless a doctor is interested in studying the specialty that includes your condition, they may not have ever heard of it. Even if they did study your particular condition, they may have gotten only four hours of training on it.

Looking at it from the other side, doctors do have little time for treating patients, and they have required continuing education hours that they also have to fit in. Some tend to stick to classes that reflect their area of interest, so they are not getting a wide variety of knowledge that, as patients, we tend to believe occurs. I learned the hard way that doctors are not created equal. If an illness or condition is not their specialty, they do not invest in it.

When you have an IV-ketamine infusion, a certified nurse needs to be present and monitor you the entire time. He or she can’t just come and go. Taking one staff member away for four hours at a time increases a doctor’s overhead expenses. Most doctors could not survive this type of set up. They need to see more patients.

Not only are you taking vital staff away when getting an IV infusion, you are using space. If you are taking up a chair in the recovery room at a doctor’s facility for hours, the doctor is unable to fill that chair with other paying patients. Not just paying patients, but patients who also need help, just as much as you do.

When insurance companies start to compensate doctors appropriately for IV therapies, it will resolve many of these issues and more doctors will offer infusions. I pray that it becomes widespread as an option.

In 2007, I was at a medical conference where Dr. Robert Schwartzman was speaking on infusion therapy and he said, “It will soon be the standard treatment for RSD patients.”

“Soon” in medical terms can often be 8 to 10 years. It is about time that we get better access to proper and timely care.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found at her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Pain Patients Need a Champion

By Pat Akerberg, Columnist

As the national debate shines a spotlight on the opiate addiction and overdose problem, the divide widens between how the CDC/FDA/DEA and chronic pain sufferers see it. 

Is it an opiate problem alone that can be regulated or a pain management problem that needs to be addressed? The government and pain patients are both fighting to preserve life, but their vantage points on the risks and benefits of opioids are very different. 

As protectionists, our Goliath-like government agencies are reacting to tragic deaths caused by opioid overdoses with a "War on Drugs" approach. They have mobilized around a clear direction, ownership, and action plan – stringent prescribing guidelines that force physicians and pharmacists to curtail and deter patient access to these medications. 

But for millions of chronic pain sufferers, protective of their own survival, those guidelines now put them at risk of their pain being undertreated or untreated.  

Already marginalized by chronic pain, they can’t afford to lose more quality of life or the will to press on if the benefits of those medications are abruptly taken away. The human right of self-preservation and the oath to do no harm are at issue.  

Even though pain sufferers are unified in their opposition to many of these measures, without a clear direction or representation they haven't had any influence. Their input has been largely excluded by the government’s closed process, a top-down stance many view as misguided and cruel. 

With sporadic grassroots efforts, pain patients are pushing back -- sporadic because many are already overwhelmed trying to cope with their medical challenges.

When people who are affected by a blanket change push back, it’s because something was sorely missed by the change drivers.  The guidelines weren't communicated well, didn’t include input from the people affected, and minimized issues that could have many serious unintended consequences. Many in the pain community feel betrayed and abandoned.

While the David-like courage and bravery of patients moves me, I’m also one of many frustrated chronic pain sufferers concerned about making headway without a proactive approach. 

Maybe it’s time we borrow from the best change management practices used successfully in business.  These practices effectively mobilize the energies of those needed to make change happen.  Progress occurs only when several key factors are fully defined to get from “current reality” to “future state." Those critical factors involve:

1. A clear definition of our unmet pain management needs
2. A realistic assessment of our current pain management reality
3. A compelling vision for future pain care  
4. A transition plan to get there

When any one of these critical success factors falls short, no amount of reactionary rhetoric or emotional expressions from us will substitute for our own proactive pain management platform.  Our efforts to fight back will sputter up against a bureaucratic wall. 

The deficiencies in the change approach our regulators took frustrated our expectations that we’d be heard and understood, with empathy and dignity.

Expectations can backfire if they’re unrealistic.  When they operate unchecked, it means that we have assumptions, predictions, and underlying beliefs that something will happen or play out the way we hope and need them to. We’re attached to an outcome when we hold onto those expectations. 

But life isn’t perfect and systemic change doesn’t happen overnight.  Eventually we are bound to have an experience like this one in which the gap between our expectations and reality results in a disappointing thud.  A self-help quote describes that occurrence well: “expectations are the partner of disappointment.”

Trying to change their hearts and minds about us, we’ve worked to convince the regulatory, profit-seeking, and career promoting stakeholders that we’re credible and responsible, not addicts or malingerers.

But the more dramatic our attempts have been, the more we’re viewed skeptically. Taking that personally, we feel misunderstood, thrown to the wolves and without impact.  In self-defense, sufferers continue to dial up reactionary and passionate protests, hoping regulators will someday see that their guidelines don’t solve our pain management needs.  

Since hope alone isn’t a strategy, we should redirect our energies and stop giving our power away while emotionally bargaining over the legitimacy of our pain management concerns. We also need to stop seeking compassionate understanding and consideration from entities ill equipped and unlikely to offer them. 

The “recovery” community sums up that advice as, “you don’t go to a hardware store expecting to buy bread.”  Better to save our hopes for our families, friends, and support groups where the odds favor us. 

Likewise, in the context of systemic change regarding chronic pain management, our expectations have a better shot of being met by a credible coalition that represents us.  

First and foremost, a strong change initiative needs a champion who owns the challenge and drives a clear and comprehensive change management platform that sets the conditions for success.  Without that credible representation, we have no seat at the table, nor any accountability.

Our very real pain management needs present a clear role for advocacy groups to step up and represent.  There’s no shortage of would-be sponsors for us to recruit.  Pain Pathways estimates there are 21 pain advocacy groups, along with 39 other disease related advocacy groups. 

The arrow of purposeful action and accountability points to an urgent unmet need – a coalition willing to champion a change agenda that best represents our interests, including ways we can champion and support it. 

The regulatory agencies have their plan with solid representation.  Let’s face it, without our own platform we sit in pain, frustratingly sidelined.

Let’s regroup and start shopping elsewhere for bread.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and is a supporter of the Trigeminal Neuralgia Research Foundation.

Pat draws from her extensive background as an organizational effectiveness consultant who coached and developed top executives, mobilized change initiatives, and directed communications.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

The High Cost of Anxiety Drugs Gives Me Anxiety

By Crystal Lindell, Columnist

I recently got a new prescription for a drug that’s supposed to help with my anxiety — which is a debilitating mix caused by opioid withdrawal and what I would call a base level of anxiety that runs through my bones.

The ironic thing about what happened is that when I went to pick up the anxiety medication, the cost of the prescription nearly gave me an anxiety attack — right there at the pharmacy.

The co-pay was $65.

It gets worse. My doctor wanted to gradually move me up on the dose, so he had ordered some 10 mg pills and some 20 mg pills. The insurance company wanted me to pay $65 for EACH dose! That’s $130. 

We need to talk about co-pays. There’s this misconception in America that if you have health insurance, then you don’t have to really worry about medical bills.

But that’s so incredibly not true. 

Listen, I wish a $65 co-pay for medication was no big deal for me. I wish I could just whip out some hundos every time I stopped in the pharmacy and throw them around like confetti, but alas, I am not a rapper or a Kardashian. 

So when my insurance company tells me that the medication I am taking is “not preferred” and thus comes with a $65 co-pay, I cry a little inside. Especially since it’s a monthly prescription.

Add in a couple other meds ($25/month) and I’m looking at $90 a month for prescriptions. That’s literally an electric bill, or four tanks of gas, or about 10 percent of my rent. 

I asked the insurance company if I could appeal the fact that it’s not their preferred medication, seeing as how I had what I thought were very valid reasons. 

1)  I had a horrific reaction to the one that is preferred, and ended up in the ER.

2)  As a response to the horrific reaction to the other drug, my doctor ran genetic testing to see which meds would work best for me, and after a lot of consideration we decided on this one.

3)  This is the medication my doctor chose.

But the insurance company was basically like, “Umm, yeah, no you can’t appeal.” Something about how they do technically cover it, so there’s nothing to appeal.

They literally tried to tell me that my doctor should just prescribe one of the preferred meds, completely ignoring the fact that my psychiatrist had literally spent hours with me talking about all the pros and cons before he decided on this one.

And then they had the audacity to act like it was no big deal. But if it’s no big deal, why don’t they pay the $65 then?

My $65 co-pay is just one small example of all the ways people with insurance can still find themselves with mountains of medical bills. There’s also the $30 co-pay for every single doctor’s appointment, and the $2,500 deductibles you run into every time you’re in the ER.

I live paycheck to paycheck, and all the medicals bills can make it hard to breathe. In fact, it’s enough to give a girl an anxiety attack.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.