Why IQ Isn’t Enough for Pain Care

By Pat Akerberg, Columnist

Our once patient-centric healthcare system has been upended and turned into a profit-over-people financial equation. 

Consequently, patients feel their concerns are intentionally disregarded while medical practitioners are ham strung by compromised standards. I wonder if they are as disillusioned as we are with timed, cookie-cutter treatment approaches that reinforce unsettling disconnects.

One such disconnect involves an underrated, often missing link – empathy – considered one of the most effective aspects of an outstanding healthcare practitioner. 

Empathy is compassion for the chronic illness, pain and impairments their patients endure. 

In his 2005 groundbreaking book, “Emotional Intelligence: Why It Can Matter More Than IQ,” Daniel Goleman made the case for empathy to be recognized as an essential component for emotional intelligence.

Differing from the intellectual focus of IQ, empathy is one of the 5 essential dimensions that make up ones’ emotional quotient or emotional intelligence – “EQ” for short. 

• Emotional self-awareness: Knowing what one is feeling at any given time and understanding the impact those moods have on others
• Self-regulation: Controlling or redirecting one’s emotions; anticipating consequences before acting on impulse
• Internal Motivation: Utilizing emotional factors to achieve goals, enjoy the learning process and persevere in the face of obstacles
• Empathy: Sensing and responding effectively to the emotions of others
• Social skills: Managing relationships, inspiring others and creating connections

The key point behind EQ is that it can often matter more than IQ or technical training alone.  While IQ may typically get someone hired or gain them entry, the EQ factor is what gets them promoted, predicts excellence and professional success.

Possessing both IQ and EQ is considered a winning combination in any role or field. But not everyone acquires that golden pair without awareness and training -- unless they are uniquely and naturally skilled at both. 

Our medical practitioners (regulators and stakeholders) are no exception to this.  In fact, the widespread distortions and neglect surrounding our side of the pain care equation and story clearly demonstrate the kind of harm pervasive EQ blind spots can do.

We’ve all experienced those rare physicians and practitioners who are both competent and capable of conveying a caring approach and empathetic style.  Even if medications and various treatments fall short in addressing our chronic illnesses, their support and desire to help us never falters.

It helps immeasurably to know they’re in our corner.  Physical healing may not always be possible given our circumstances, but that’s not the only kind of healing that matters. The presence of such EQ far outweighs the deficits of an approach without it.  Numerous studies confirm that such human consideration and concern delivers a positive placebo effect that can’t be underestimated. 

Pain patients already endure more than most will ever face.  We suffer even further when our practitioners and administrators lack or devalue the human understanding EQ brings.

So how effective are our practitioners at delivering that kind of humanistic medical care in our current system?

Using the 5 factors for EQ, I did a personal rating of all of the practitioners I’ve seen since the start of my trigeminal neuralgia.  It turns out that 30% on my list are high in EQ.  Unfortunately, that means that 70% fall short.

The stand out characteristics that I look for made those 30% rank far above the 70% include:

• Being personable
• Making eye contact with me (not a computer screen)
• Showing true interest in my level of pain
• Patiently and intently listening to my answers
• Being open to my questions
• Offering tailored options
• Expressing empathy or gestures of concern
• Thinking outside the box for solutions
• Collaborating
• Treating me like an important partner and a helpful staff

The reasons that some practitioners or institutions may or may not possess or demonstrate empathy vary as much as our illnesses do.  The good news is that once a person becomes self aware and motivated, EQ and empathy can be learned thanks to plasticity, our brains’ ability to change.

There’s no formal assessment that I know of that measures the damaging, stressful effects of chronic pain and illness when coupled with the double whammy of marginalized or impersonal healthcare.

However, like an IQ test, there is a formal assessment that determines a persons’ EQ status on all five dimensions.  For a better tomorrow, there’s no reason that this assessment couldn’t be required at the start of medical training programs (doctors, nurses, physical therapists) to identify a students’ strengths and needs.

Taking it further, educational institutions can also borrow from a virtual reality learning tool developed by Embodied Labs founder Carrie Shaw, which she used to increase her understanding about her mother’s experience with dementia.    

With the intention of bridging the life experience-understanding-empathy gap for young medical students, John’s Hopkins recently experimented with this technology. The project, “We Are Alfred,” gave students hands-on experience of what it’s like to be a 74- year old dealing with impairments in sight, hearing, and memory.  The simulation demonstrated that you can develop EQ skills and foster understanding between practitioners and patients by giving students a slice of what their patients have to deal with.   

Many times I’ve wished that the severe face pain that I experience could be simulated so that practitioners (and others) could experience what it feels like. I bet you have too. 

Wouldn’t it be great, even fitting, for our government to sponsor an initiative to simulate pain?  Maybe then the reality of debilitating pain would finally trump the punitive intellectual biases blocking the balanced approach EQ brings about.

Meanwhile, I’m all for efforts that aim to reinforce the message to our medical practitioners and facilities, educational institutions, government regulators, insurance companies, Big Pharma and other stakeholders that no one cares what you might know (IQ) until they know that you care (EQ).

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.

Fed Up With Media Coverage of Opioids

By Janice Reynolds, Guest Columnist

I got fed-up the other day with another article in the newspaper that lacks veracity and is truly not in the interests of the “people’s right to know,” as it is untrue, biased, and does not include any input from true experts.  

Where has integrity and veracity gone when it comes to the press?  I speak particularly of the Portland Press Herald, but many of the other news media also confuse opinion with fact and sensationalism with truth.

100 million people in the U.S. suffer from chronic pain related to many different causes, including cancer, yet no politician seems to care.  They are very uncompromising that an addict’s life is much more important. 

When the media is asked to show the evidence for the oft repeated claim that “studies have shown conclusively opioids don’t help chronic pain, in fact they make it worse,” requests are denied.  This is likely because there are no such studies on humans.

The one study which claimed opioids made pain worse was done on rats who had essentially been tortured – which is not evidence at all. 

Pain is pain, and chronic non-cancer pain does not differ physiologically from other pain.  With some types of pain, another medication may work better than an opioid, but most severe pain is relieved best by an opioid. 

A recent Associated Press article republished in the Portland Press Herald is an example of half-baked reporting:

“At least 43 states’ governors signed on to the Compact to Fight Opioid Addiction, committing to fight the epidemic fueled by the overprescribing of prescription pain relievers.”

There is no evidence to support this statement what-so-ever.  If you look at the history of the current epidemic, it has nothing to do with people with chronic pain.  There are many problems people want to apply to the epidemic’s cause, including the advent of OxyContin, but that is a correlation rather than a causation. Most overdoses now are heroin and illegal fentanyl related.  Blaming the overdoses on prescription drugs is pure conjecture. 

The “overprescribing” of opioids is pure opinion -- unlike the overprescribing of antibiotics, which is based on evidence and is a justifiable use of the word. 

One of the worst references in the article is the use of Andrew Kolodny.  The man is an addiction treatment doctor who his chief medical officer of Phoenix House, which operates a chain of addiction recovery centers (which the article fails to point out). He knows nothing about pain management and is a known opiophobic, yet is considered an expert on pain by the AP:

“Until recently, many policymakers believed the epidemic was fueled by drug abusers and that limiting prescriptions would hurt legitimate pain patients, Kolodny said. But now there is growing awareness that doctors and dentists are prescribing too many painkillers, which are addictive and hurting many otherwise good people, he said.”

Other “real” pain experts such as Dr. Forest Tennant, Dr. Lynn Webster, Chris Pasero and many others who are acknowledged internationally should have been quoted or allowed to give a counterpoint. 

The sin of omitting the opposition’s opinion is greater than lying outright.  When the media stacks the deck to reflect their opinion only, how can they be trusted? 

Meanwhile, people with pain suffer, many cannot even find a provider and suicides are increasing.  Insurance and Medicaid will not pay for many of the non-opioids and non-pharmaceutical interventions, and very dangerous drugs such as NSAIDs (ibuprofen, naproxen, diclofenac, etc.) are pushed. Some estimate there are 20,000 deaths a year from NSAIDs, but you don’t see that in the media. 

People with pain have become marginalized, and subjected to prejudice and bias, much of it due to media coverage of chronic pain and opioids.  Everyone should be concerned, as they are going after acute pain next.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country at medical conferences on different aspects of pain and pain management, and is co-author of several articles in peer reviewed journals. 

Janice has lived with persistent post craniotomy pain since 2009.  She is active with The Pain Community and writes several blogs for them, including a regular one on cooking with pain. 

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 Companion: Rediscovering Yourself in Pain

By Sarah Anne Shockley, Columnist

Pain is so pervasive and so enmeshed with our daily experience that we can forget what life was like without it. We may lose a sense of who we were before pain entered the picture.

When I began to return from the most intense part of my own journey with pain, I realized that I was going to have to find a way to disentangle myself from it, to disengage my sense of who I was, my identity, from pain.

At the time, I couldn’t find a sensation of body-without-pain, even in my imagination, and I couldn’t envision a future without pain, though I desperately desired it. I had forgotten who I was without pain, and I wasn’t sure who I had become from the experience.

I certainly knew I had changed irrevocably, but I wasn’t quite sure in which direction all the changes lay.

Pain had become so embedded in my body, my daily routines, and my awareness, that this constant companion had become too familiar, like a terrorist and his hostage. Perhaps this is a familiar feeling for you.

The difficulty doesn’t lie in wanting to keep pain around like an old pal, far from it. It lies in the fact that pain has been with us for so long that we aren’t sure what will be left of us when it finally departs.

Will it take most of us with it? What does it mean about who we are if pain never leaves? Maybe we’re not even sure we have an identity beyond the pain anymore.

This merging of the sense of self-identity with the self-in-pain is really important to recognize.

I found that, in order to find myself again and to re-engage with the inner me (as opposed to seeing myself only as the-one-in-pain), I had to disengage my self-image and feelings of self-worth from my experience of pain and my body’s limitations.

I worried that my injury, my pain, and my being in need of assistance had turned me into a weak and needy person. I had to realize that just because my body felt weak, didn’t mean I was weak as a person. Just because my body was in pain, didn’t mean I was being a pain. Because my pain created new needs which I had to learn to communicate, didn’t mean I had turned into a needy person.

Many of us who have been in pain for a long time have been living in reaction to pain. We have allowed pain to become the organizing principle in our lives. s the only real power in life. We might shift all our choice making onto pain’s shoulders. After all, it seems to rule everything.

This seems like the only choice there is, but there is a subtle but important shift that seems to be necessary during the healing process, and that is to move the responsibility, power, and decision-making back onto our own shoulders. This is part of dis-identifying with pain and disentangling ourselves from it.

While pain is certainly the reason we can’t do many things, we need to be careful not to allow ourselves to think that it is the director of our lives. We can make the small but vital shift in our perception of who we are in pain, as we begin to find a way out of living utterly beholden to pain and connected to it on an identity level.

As far as I can tell, this process has the potential of gradually unfolding something like these five steps:

1. Pain Arrives: We resist, we do all the “right” things, including therapies and medications. Pain doesn’t leave, so we try harder to get rid of it, adding alternative therapies, prayer, more willpower, more and different medications, etc.

2. Pain Stays: It still won’t leave. It may even get worse. The longer we live with pain, the more difficult it becomes to see ourselves beyond or through it.

3. We Learn to Work with Pain: We come to a place of honoring pain’s presence and its unusual gifts. We stop fighting against pain and begin to work with it and through it, regaining a sense of self that is not utterly beholden to pain as dictator and director. We recognize pain as something that is trying to heal itself in and through us.

4. We Realize Pain is One Aspect of our Lives, Not the Totality: Pain represents a very demanding part of our experience, but it is not who we are. It is a landscape we are walking through. Our inner selves are still intact. We learn to work with pain differently, seeing both it and ourselves from a different perspective.

5. Pain Begins to Relax, reduce, and dissolve.

Ultimately, whether pain completely leaves, or it stays for some time longer, we can let go of identifying with the pain as us, and ask ourselves who we want to become from and through the incredibly challenging experience of living with pain.

When we reconnect with our inner selves beyond the pain, we can find renewal. We can accept all of our experience with pain as part of a greater path, putting ourselves at the center (rather than pain), and live with more ease, grace, well-being, and inner peace.

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.

A Pained Life: The Art of Pain

By Carol Levy, Columnist

There was a gigantic painting in the dining room of my parents house. My mother was the artist. It was beautiful, captivating and very, very unsettling.

Dead center she had painted a person crouched down in a tight position. It has been many years since I last saw it, but as I recall one hand was held outstretched towards the viewer. This person was surrounded by triangles, each one a different color, all pointing downward towards the person in the middle.

I did not like to look at it, but I never thought through what bothered me so much about it -- until I became involved with Susanne Main's research into creative depictions of life with chronic pain.

Susanne is an associate lecturer and PhD candidate at the Open University in the United Kingdom. Using online platforms, she is exhibiting artistic renderings by chronic pain patients.

Some are in your face: this is my pain, my life. LISTEN TO ME!

Some are explanatory: this is what arthritis does to my body. Some show the emotional effects of living with daily pain.

The goal of the Exhibiting Pain project is to find new ways of communicating to each other and the medical community what our pain is, how it feels, how it effects and affects us.

The meaning behind the picture I contributed, Trigeminal Neuralgia Strikes, was obvious, even the double meaning of the title: the lightning-like strike of pain and the fact that trigeminal neuralgia strikes out of the blue.

I was very surprised by the response. One commenter felt using red for the pain made it seem “superficial," the picture not indicative of how painful the disorder can be.

But the picture also got my point across. He said it made him want to know more about a condition of which he had been unaware.

"trigeminal neurlagia strikes"

So it was successful. To me.

We often lament how people don't “get” our pain no matter how many times and ways we try to explain it. We know what we are saying. We assume that that is what is being heard.

I drew the picture some time back to denote the pain for both Trigeminal Neuralgia Awareness Day and for Women in Pain Awareness month. It never occurred to me that what I drew was not  what people were seeing. 

So often we say, "They refuse to understand." I explain and explain until I'm blue in the face and they still say, “It's not so bad” or “I had a headache like that once.” 

The one thing I rarely hear, or to be honest even thought, is maybe I am not explaining it in a way they can understand. Instead of getting frustrated or angry, maybe I need to ask, “What exactly is it you don't understand?”

Sometimes we think we are speaking the same language, but the language of pain is often so very person specific. It's like the old break- up line: “It's not you, It's me.”

I regret never talking with my mother about what she had painted. I knew her life had been hard, and that she retained a disability from her bout with polio. I did not want to truly know her sadness and suffering. I now realize her picture spoke, very clearly and with no doubt, of her own pain.

But when it does not speak, like with my picture, it may just be me. And I may need to learn the language of the listener, so what I say is what is being heard.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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 Won't Doctors Come to My State?

By Ellen Lenox Smith, Columnist

The other day at a medical exam, I was asked if I would consider helping to raise awareness about a serious issue we face in Rhode Island: doctors are rarely willing to come practice here.

My doctor’s medical practice wants to hire new physicians, but they have trouble finding a doctor even willing to be interviewed.  Many doctors in the practice are in their 50’s and will be difficult to replace when they retire.

Why is it so difficult to find their replacements?

I looked up an article written by John Kiernan called “2016’s Best & Worst States for Doctors” and began to find some answers.

To my surprise and dismay, Rhode Island is listed as the 50th worse state for opportunity and competition, and it is rated 46th for medical quality.

Overall, Rhode Island was ranked as the 49th worst state for doctors, only beating New York and the District of Columbia.

Learning this, I called the Rhode Island Medical Society to get a better understanding of  why we rank so poorly. I spoke with Steve DeToy, the Director of Government and Public Affairs. He offered to explain what was happening, not only in our state, but around the country.

According to DeToy, about 20 percent of Rhode Island’s population is eligible for Medicare. Reimbursement fees for Medicare are established by a formula and presently are equivalent to those in Massachusetts.

DeToy told me the problem is not Medicare, but the reimbursement rates set by commercial insurers, which are deterring doctors from wanting to practice here. Health plans like Tufts, United, Blue Cross Blue Shield, etc. have for years established very low reimbursement rates and there is no regulatory agency telling them what they should pay a doctor for.

These insurers may be saving costs to keep rates lower, but we are losing the chance for more medical help in Rhode Island. Why would a doctor choose to come here with huge debt from medical school knowing they could go to another state and be paid for the same services at much more reasonable rates?

The only positive aspect I found in this inexcusable and perhaps avoidable mess is that Rhode Island participates in federal and state funded health professional loan program that helps pay the exorbitant costs many doctors face for medical school loans. On average, medical school students end their education about $180,000 in debt.

In return for the loan payments, primary care, dentistry, and mental health professionals make a two year commitment to practice in communities where there is a shortage of physicians. Part-time employment requires a commitment of four years. This year, 24 such awards were given out. Last year, due to financial issues, only 14 were awarded.

Many patients in Rhode Island who live with complicated conditions are having trouble finding a doctor willing to treat them. Doctor shortages are a serious problem, not only here, but in other small and rural states where reimbursement rates are set too low. As doctors reach the age of retirement, imagine what it’s like to have trouble finding a qualified replacement to keep treating your patients.

Who can blame these practitioners? Why would you want to have less reimbursement for the same job that can be done in another state where you can get adequate compensation?

Medical professionals should earn enough to pay off their loans, support their families, and live the lives they deserve.

Where does your state stand? Do you know? We need to write our congressmen and make sure they are focused on this issue and are coming up with reasonable solutions to address this problem.

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.

How Curcumin Helped My Chronic Pain

By Judie Plumley, Guest Columnist

In 2013 I had a spinal fusion, 7 months after I had transvaginal mesh removal and reconstruction surgery.  During the operation, I contracted a severe bacterial infection in my spine called methicillin-resistant Staphylococcus aureus (MRSA). 

To make a long, painful story short, I ended up having 5 more spinal surgeries in the next year.  They did not get rid of the infection until it had liquefied 2 vertebrae and surrounding tissue. It almost killed me. 

There is extensive nerve damage, and my back is filled with rods and screws. 

During the worst of it I was on fentanyl, Dilaudid, Demerol, gabapentin (Neurontin) and oxycodone.  I spent 2015 weaning myself off the narcotics.  I was losing my insurance and I knew if I didn't, I would be in a withdrawal from hell.

I did go to two pain clinics, but just simply refused to be treated like a criminal.  I started exploring other options to deal with my pain.

Judie Plumley's spine

Since my son is a massage therapist, the first thing I started as soon as I was able was to get weekly massages while I healed.  Joseph stretched the forming scar tissue in order to allow me to move.

Next, I started using kratom, a half teaspoon twice a day.  I was amazed by the effect.  It knocked out a considerable amount of pain, but I was still spending 12 to 14 hours in bed each day.

About 2 months ago, my sister told me to try a supplement that combined curcumin – a yellow spice -- with black pepper oil. I bought it from Amazon, $15 for 120 caps. 

I am amazed with the results!  My pain is now bearable.  I can do about twice as much as I could before, and I am spending much less time in bed.

I am now in the process of getting off the gabapentin, but it is much harder than any of the narcotics.  The withdrawal is horrible.  As soon as this devil is off my back, I am done with doctors and hospitals.

curcumin

I refuse to be treated like a drug addict or a criminal.  I believe pain clinics are nothing more than a scam and that drug companies intentionally add things to their drugs to make people addicted. The antidepressants that are taking the place of opiates are even worse! Ever heard of a brain zap?

I swear, they are trying to kill us, or drive us to kill ourselves.  I don't understand why they are attacking people in chronic pain.  It's a terrible way to live.  I am lucky I have my son, a good support system, and have found something that works.  Life is hard enough as it is.

I have kept a journal since 2014.  I plan to write a book about my experience with MRSA.  Unless you’ve had it, you have no idea how dangerous and painful it is.

Judie Tucker Plumley lives in Georgia.

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.

How to Be a Patient Advocate

By Barby Ingle, Columnist

People in the pain often get ideas about what they can do to help advocate for the pain community, such as a petition drive or letter writing campaign. Some of these ideas are great, but when they try to implement them or get others to, things don’t work out -- there’s little participation, they get discouraged, and that is the end of that.

Over the past 10 years as a patient advocate who is very vocal and seen many ideas come and go, I have learned not to spend too much time doing what I know doesn’t work.

Is this fair to others in the pain community? I think so.

About 7 years ago I wanted to make a difference in the disease community of Reflex Sympathetic Dystrophy (RSD). I wanted to get bills passed to require mandatory education in RSD for providers. It would have to be a state-by-state process, which would take time, money and dedication, with no guaranteed results.

I started in Virginia by reaching out to a state legislator. He met with me through Skype, and then had me come to his office. I learned that anytime you want to mandate anything, it is very difficult to get passed into law. The legislator suggested I work with the Virginia health department. I had multiple meetings with state health officials and managed to get RSD information up on the health department's website, as well as over 10,000 RSD pamphlets printed and spread throughout Virginia. It was amazing. I then set my sights on other states.

We needed to raise funding for the printing of pamphlets for other states. A woman called and said that she saw our request for donations, but before she donated she wanted to make sure that this was not another fly-by-night idea. She was right to ask, although I was slightly offended that my hard work, volunteer time and dedication would be called into question.

In the end, we couldn’t raise the funding needed to get this accomplished. I was very sad, but had to admit my great intentions could not come to fruition because I was not able to raise the support or funding it would take. People loved the idea, but didn’t want to help physically or financially.

I have grown very leery of petition drives for similar reasons. The chances of a petition changing something major is almost zero. Even when over 80 pain groups came together this past year to help guide and make changes to the CDC opioid prescribing guidelines, it was not enough.

We did get one pain patient representative added to an advisory "stakeholder" group, which gave recommendations to the CDC's "Core Expert Group" committee. But that committee already had in mind what they were going to do, and unless we got someone on the Core Expert Group, we were not going to change their minds or the guidelines. Thousands of people in the pain community also wrote letters and signed petitions to the CDC. It didn’t make a difference.

What can we do to change this?

There has to be a way to harness the energy and passion in the pain community that is effective, efficient, and useful. Otherwise the pain community will continually be run over and ignored.

I believe we have to get into legislative offices. Today, this week, or this month, make an appointment with your state or local representative -- especially if they are on a legislative health committee. Go see them in person. Tell them your story. Tell them why proper and timely access to pain care is badly needed. How you are counting on them to support future legislation that is supportive of pain patients.

Tell them that you are paying attention, not just when there is a bill up for a vote, but every day -- because you are in pain and have special needs every day. Paint your story for your legislator so they will remember you when they are in the backrooms making deals before committee hearings.  Make them remember your face, your name and your story when they are deciding what bill to pass and how it will affect you.

Put a face to your disease and a face to chronic pain. As a 501 (c) (3) non-profit leader, I cannot say you should vote for this legislator or against that one. I approach legislative needs with each legislator not caring what aisle or political party they belong to. All legislators can help us because they are all in a position to pass laws.

Realize that everyone has an agenda. Which is most noble? The pain patient trying to do something for themselves so they can have more productive lives; insurance companies that lower the cost of healthcare; drug and medical device makers that are investing their time and money into treatments; or the providers we rely on to gain access to those treatments?

Become a person that the legislator knows, become the face in their thoughts when pain care comes up for legislation. Put a human in the process, so that the legislator sees that this affects people they know.

Patient advocacy groups have formed coalitions, such as the Consumer Pain Advocacy Task Force. These coalitions are planning and implementing strategies, and working together to make change as well. Professionalism and diplomacy are keys to their work and they need to be done by all in the pain community, whether you belong to an advocacy group or if you are working on your own.

Advocating with aggressive anger to our legislators, pharmacy boards, CDC, DEA, FDA, etc. allows our emotions take over and it is setting us all back. Flooding an office with angry letters, emails and phone calls with non-sustainable facts does not work.

We need to have in-person visits before the legislation even comes up. This is the "off season" for most legislators. Reaching out now, before the legislative sessions start again, for a face-to-face meeting has a time -- and it is now. 

We also need to target our own representatives. Having people from New Mexico calling legislators in West Virginia is probably not going to change any minds in West Virginia. In addition, making comments that are unsupported by facts, such as claiming that more patients are overdosing or turning to the streets for relief, are not yet proven. They can be debunked and then we are seen as catastrophizers.

Please know actual facts and be able to site statistics with solid sources when you advocate.

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 (iPain). 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: Locked Inside

“Locked Inside”

By Jennifer Chambers

Locked inside, I can’t get out of this rebellion called my face

Clawing from the inside to escape this hellish embrace

This mocking normalcy on the outside hiding the hell within

There’s nothing to show the judgers the truth hiding behind my skin

The lightning strikes with no warning of the coming storm

Leaving me in sudden agony far from the appearance of the norm

Funny stares and looks while I fight away the tears

Trying not to expose the truth behind my quaking fears

If there was evidence of each fight, scream, scratch and tear

Is this how my tormented and brutalized face would appear

Covered in rips and scratches, lines drawn upon lines

Indicative of my daily struggle to survive these impervious binds

pain art courtesy of painexhibit.org

Jennifer Chambers suffers from trigeminal neuralgia, a rare facial pain disorder, as well as fibromyalgia. Before she became sick, Jennifer worked as a psychologist.

When not immobilized by facial pain, Jennifer spends her time with family and writing her blog, The Spirit Scribe. She started her blog as an outlet for her pain and depression. Writing helps her get through depression, by giving her a release and a place to express herself daily.

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

I'm Old Enough to Know What Pain Is

By Jessica Link, MD, Guest Columnist

“You’re too young to be in pain!”

Those are the words that I have heard way too often in the last months. I recently moved for a new job opportunity, and though it was the right action to take for my career, it was a nightmare for my pain.

I was diagnosed with rheumatoid arthritis at age 27 and have been through numerous joint surgeries. For any person that suffers from arthritis, no matter your age, you know it can be a very painful disease.

The fatigue, cotton-stuffed brain, and general flu-like muddle that plagues me are tough, but nothing compared to a flare. It’s a burning white, vision-blinding pain that will wake me from sleep if I move the wrong way. It’s a relentless monkey on my back that weighs me down from exercise, work, and a social life. It’s the one thing that can rob me of my will to move or even breathe.

According to most doctors, I am “too young” to have pain. And I am “too young” to take an opioid.

Part of the difficulty I face is that I am allergic to NSAIDs (ibuprofen, naproxen) and will have an anaphylactic reaction if I take them. I use a small dose of tramadol a couple of times a week to take care of the worst days. Most days I use a combination of TENs, massage, exercise, and topical treatments as well DMARDs and biologics.

JESSICA LINK, MD

The pain management doctors in my area refuse to take anyone who is on even the smallest dose of opioids. It took me a long time to convince my rheumatologist that I will not be an addict by taking one pill every few days. The response I get is what many like me have heard: “Opioids are addictive. They will ruin your life.”

This makes my blood boil. Opioids have just as much power to allow someone to live as they do to bring someone down. However, a success story will not get the coverage that abuse and addiction will.

Part of my frustration stems from the fact I have a medical degree and understand all the science behind my disease and the drugs used to treat it. That same degree also allows me to draw upon my experiences caring for patients suffering from addiction.

There are two types of people who are suffering that are united by a common enemy: pain. Some have physical pain and need the medication to live, and others have pain caused by the medication.

Removing the medication does not fix the problem because the pain remains. It only leads to more suffering; suffering that slowly drains life from people. For so long now everyone wants to point fingers, place blame, and label a scapegoat.

However, I feel that every side has played a role in this disaster, below are just a few:

1. Pharma: Improper and misleading advertising.
2. Doctors: Overprescribing at times in an attempt to ease suffering.
3. Government groups: Throwing power around to make laws without thinking through the consequences.
4. Pain patients: We need to take responsibility to safely store our medications, be educated, use pain management tools, and advocate for ourselves.
5. Addicts: Addiction is a disease but getting help and working to be clean is a choice.
6. Media: One-sided stories and outrageous coverage cause more harm than good.

I’m old enough to have opinions. I’m old enough to know right from wrong. I’m old enough to have empathy and compassion. I’m old enough to know what pain is.

Jessica Link started her career as a family doctor before chronic medical issues forced her to shift directions. Now, she works full-time as a medical writer. She lives in Connecticut.

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.

Doctor: Pain Has Never Killed Anyone

By John Hsu, MD, Guest Columnist

The opioid problem with medicine began when The Joint Commission promoted the concept that pain is the fifth vital sign, and that patients should be asked about their pain and the quality of their treatment.

Ten years ago, when my hospital was undergoing an inspection, I clearly remember the examiner chastising me about my multimodal pain therapy and her concern that it would leave patients in pain. Clearly, doctors were put on alert that they could be sued for leaving a patient in pain.

Pain as a fifth vital sign is really contraindicated. Pain has never killed anyone, but opioids killed over 29,000 Americans last year. They don’t have any vital signs.

Doctors are now at a crossroads. The Centers for Medicare and Medicaid (CMS) has attached patient satisfaction scores to reimbursement. A patient comes to the office and demands pain meds. If the doctor prescribes pain meds, the doctor can not only lose their license, but go to jail for murder, as Dr. Lisa Tseng from Rowland Heights, CA has. Or they can risk poor patient satisfaction scores and, if they are a part of an accountable care organization (ACO), risk losing their employment.

Why are doctors burned out? Because other people have come between the doctor-patient relationship. I had a nurse tell me that she would put her 21 years in ICU up to my skills as a physician, to which I retorted that she still had to take orders from me.

This loss of respect amid the loss of autonomy is frightening.  It is one of the major complaints doctors describe when they are asked about burnout and why they are leaving medicine. The healthcare team is no longer run by the doctor. It is run by nurses from the quality review department, enforcing best practices on physicians so protocols and guidelines set up by the government are followed.

I call that evidence-less based medicine. Guidelines have destroyed the doctor-patient relationship. Does the government really have patient interests at heart or is the government really just a big micromanager? 

Perhaps the answer to the opioid problem lies with outside-the-box thinking. What if we correctly promote that pain must be present for us to live and that some pain is good?  Unlike Patrick Henry, who said “Give me liberty or give me death,” I personally would prefer to say, "Give me pain and give me liberty, but don't give me death."

Patients have a responsibility to take care of their own health. All prescriptions written by doctors and filled by pharmacists were written correctly. Yet some patients are not compliant and take too many pills. We all know we should not overeat, but 70% of the American public is obese. Humans are their own worst enemies.  Unpopular as this stance may seem, it must be mentioned that while the population of the U.S. is 324 million, 259 million opioid prescription were written in in 2012. 

The Joint Commission's edict that no patient should be in pain changed patients' expectations. Everyone expected and demanded to be pain free. But focusing on the short term discomfort experienced by those in pain ignores the long term goal of improving a patient's health.

The government (FDA, DEA, CDC and policymakers) has decided to restrict opioid prescriptions. This is logical, but does not address human nature. The end result has been that addicts and patients who cannot get prescription opioids have turned to cheaper and easily attainable $5 bags of heroin. Heroin deaths have quadrupled in the last decade. In 2015, over 10,000 people died from heroin overdoses. The situation is rapidly worsening, as illicit drug makers are mixing heroin with fentanyl, which is 70 times stronger than morphine. 

The opioid conundrum has become readily apparent. Opioids may be the best treatment for pain, but they raise the risk of addiction, respiratory suppression, and death.

Cultural Shift Needed in Patient Education

The solutions needed for this dilemma include a cultural shift in the education physicians and nurses give to patients and the perception that pain is bad. We have to forsake the short term treatment of pain with opioids and look to the long term goal of preserving human life.

Let’s look at patient satisfaction scores and medical education. Studies show that when patient satisfaction scores are considered in prescribing care to patients, their care is not only more expensive, but often worse -- resulting in higher morbidity and mortality. Despite this evidence, CMS has connected patient satisfaction scores to hospital reimbursement. 

The Joint Commission has promoted an atmosphere where patients believe that they should never have to suffer pain and have the right to be “pain free.” More opioids were prescribed, but often patients demanded and even threatened doctors if they did obtain pain relief.  Doctors were accused of elder abuse and medical negligence if they did not prescribe pain medication, despite the lack of medical indications or consideration of narcotic alternatives. 

Fast forward a decade and suddenly the government realized that more addicts existed and more people were overdosing. Nearly 19,000 people died in 2014 from opioid prescription overdoses legally obtained from physicians and correctly filled by pharmacists.  The government ironically declared that doctors were to blame. 

The government could not blame patients for the problem, even though the general consensus is that patients were non-compliant with their prescribed opioid doses and shared their narcotics with family and friends.  Patients were not blamed for their actions because they vote and they reelect government officials. 

The government’s solution to the current opioid overdose epidemic was a policy change.  The FDA and CDC forced physicians to limit opioid prescriptions, and increased the difficulty of prescribing opioids by changing the scheduling of hydrocodone from Schedule III to Schedule II.  The government also began criminally prosecuting physicians for murder, even though the patient was noncompliant and overdosed on opioids. 

Why did the The Joint Commission, representing the federal government, have to get involved in medicine?  Why should a federal entity interfere with the doctor-patient relationship? It is not our fault that policies make us do certain things we believe are not in the best interest of the patient.

The Hippocratic Oath directs physicians to not allow outside influences effect their patient care decisions. I would like to see medicine practiced so that the government can no longer come between patients and their doctors. Let us amend the constitution so that there is a separation of medicine and state, just like the separation of church and state.  

JOHN HSU, MD

John Hsu, MD, has been practicing anesthesia at 600-bed hospital inCalifornia for the past 23 years.

Dr. Hsu recently founded MedRev Pharma, a pharmaceutical development company which is developing a safer opioid that minimizes the risk of abuse, addiction and respiratory depression.  Dr. Hsu is also the Director of SBS Medical Management, a consultation service that addresses issues relating to healthcare reform policies, physician practice management, and medical devices.

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 Warrior: A Tribute to Sherri Little

(Editor’s note: This week marks the first anniversary of the death of Sherri Little, a 53-year old California woman who took her own life, after years of struggle with chronic pain and depression. Suicide is a difficult but important issue to address in the pain community, and our story about Sherri’s final days (“Sherri’s Story: A Final Plea for Help”) touched many readers. Tina Petrova was a friend of Sherri’s and wrote the following tribute to her.)   

By Tina Petrova, Guest Columnist

Sherri L. Little was a stunningly beautiful, diminutive blonde with sparkling, mischievous eyes. We became fast friends on Facebook, united by our common passion of pain patient advocacy.

She initially reached out to me after hearing that I had a film in development on chronic pain, saying, “Do I have a story for you!”

And indeed, she did.

Sherri was one of those rare people who could light up a room upon entering. She possessed charisma in spades and emanated a childlike wonder and joy.

SHERRI LITTLE

During the all too short time I knew Sherri, her key focus was advocating for pain patients, speaking up, and getting involved. Her search for treatments for her own painful conditions (occipital neuralgia, fibromyalgia and complicated IBS) took a back seat to her passion to help others.

I had the pleasure and honor of hosting Sherri in Toronto, Canada in May 2015. She made the long trek from Mexico where she was staying, to New York City to participate in the 2015 Caterpillar Walk for fibromyalgia, travelling onwards to me. 

SHERRI AND TINA PETROVA

I drove her around to my own treating doctors, hoping she could benefit from those who had greatly helped me. We filmed a short interview with her, which is to become a key centerpiece in our upcoming documentary.

It was Sherri’s final wish that we tell her story to the world.

Despite sleep deprived nights and painful days, she took delight in all the small activities I had planned during her stay with me, such as lunching at a vegetarian restaurant.

It surprised me that such small gestures could be so impactful for her, until she explained that her adult relationships thus far had not supported her pained life. She shared with me that she longed for deep, authentic connections.

Sherri was to return to Toronto in September 2015 to continue the interview process. Sadly, this was not to be.  

Sherri was found dead on July 7, 2015, after a July 4th weekend attempt to get medical help at a hospital in Los Angeles. Unable to eat and drink for four weeks, she had taken a solo train trip to L.A. from San Diego, hiring a patient advocate to champion her rights.

Her last ditch hope with faltering health was that she would gain access to the specialists and treatment she so badly needed to live her life with any quality. For reasons her family and I still cannot fathom or piece together, Sherri left the hospital and checked into a hotel room across the street, alone and in pain. We will never know for certain what transpired in those final hours.

Having a previous diagnosis of Clostridium difficile colitis and suffering from severe abdominal pain, she had been unable to keep food down for over a month and was existing solely on raw juices.

Her mom told me she had driven down to San Diego to take her daughter to the hospital on more than one occasion for horrible bowel pain and dehydration. After giving Sherri an IV drip in the ER, they released her home on each occasion.

In honor of Sherri’s courageous battle with chronic pain, we will be dedicating “Pandemic of Denial” to Sherri and her fight for better pain care for our community.

Sherri’s laughter will no longer echo in the halls of life, but I’m sure she’s busy keeping the angels on their toes in heaven with her loving heart and her shining soul of activism.

I can just see her high above us saying, “But you have to DO SOMETHING!”

And with that, we are. Sherri, you are loved and missed dearly.

Tina Petrova is an award winning filmmaker, pain patient and chronic pain activist.

Tina co- founded Give Pain A Voice in 2014 with Bob Schubring, to champion the rights of pain patients everywhere.

“Pandemic of Denial” is currently in production with plans for release in 2017. We have created a website to honor Sherri’s memory, which you can see by clicking here.

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.

An Opportunity to Make Ourselves Heard

By Richard “Red” Lawhern, Guest Columnist

Many kinds of chronic pain are represented by the readers of Pain News Network -- among them, several forms of peripheral neuropathic pain.  PNN readers might not be aware that a public meeting was recently held by the U.S. Food and Drug Administration on “Patient-Focused Drug Development for Neuropathic Pain Associated with Peripheral Neuropathy.” 

You can watch and listen to the June 10th meeting by clicking here.

The FDA maintains a public gateway for comments on the meeting and its goals.  I urge anyone who wishes to influence this issue to submit their comments. The public comment period ends August 10th. 

As of July 2nd, only 27 comments have been received! 

To get any notice at all, we need 2,700 -- or better yet, 27,000 comments -- not 27.  Silence will almost certainly be maliciously interpreted by the FDA to mean that pain patients are doing okay with presently available remedies, which all of us realize we most decidedly are not.

To make a comment, the FDA gateway may be reached by clicking here.

The following was the questionnaire filled out by meeting attendees.  Follow-up comments may be more effective if focused on these areas:

          Topic 1: Disease symptoms and daily impacts that matter most to patients.

1)  How would you describe your pain associated with peripheral neuropathy? What terms would
you use to describe the most bothersome aspects of pain? (Examples may include stabbing
sensations, electric shocks, burning or tingling, etc.)

2)  Are there specific activities that are important to you but that you cannot do at all or as fully as
you would like because of your neuropathic pain? (Examples may include sleeping
through the night, daily hygiene, participation in sports or social activities, intimacy with a
spouse or partner, etc.)

3)  How does your neuropathic pain affect your daily life on the best days? On the worst days?

4)  How has your neuropathic pain changed over time?

5)  What worries you most about your condition?

Topic 2: Patients’ perspectives on current approaches to treatment

1)  What are you currently doing to help treat your neuropathic pain associated with peripheral neuropathy? (Examples may include prescription medicines, over-the-counter products, and other therapies including non-drug therapies such as physical therapy). How has your treatment regimen changed over time, and why?

2)  How well does your current treatment regimen control your neuropathic pain? How well have these treatments worked for you as your condition has changed over time? Would you define your condition today as being well managed?

3)  What are the most significant downsides to your current treatments, and how do they affect your daily life? (Examples of downsides may include bothersome side effects, going to the hospital or clinic for treatment, time devoted to treatment, restrictions on driving, etc.)

4)  Assuming there is no complete cure for your neuropathic pain, what specific things would you look for in an ideal treatment for your neuropathic pain?  What would you consider to be a meaningful improvement in your condition (for example specific symptom improvements or functional improvements) that a treatment could provide?

5)  If you had the opportunity to consider participating in a clinical trial studying experimental treatments for neuropathic pain, what things would you consider when deciding whether or not to participate? (Examples may include how severe your neuropathic pain is, how well current treatments are working for you, your concern about risks, etc.)

Mine was one of the first comments submitted.  After summarizing my background as a chronic pain patient advocate, I offered several inputs.  Two seem particularly aligned with the concerns of PNN readers:

1)  Despite the legal restrictions still placed on medical marijuana, there is ample evidence in patient reports that several strains of this natural plant can be used effectively in pain management for a wide variety of chronic pain conditions, including peripheral neuropathy. Federal funding is needed to bring marijuana research out of the shadows and integrate it into mainstream medicine. If legislative changes are needed, then seek them soon.

2)  The most important near term outcome that this public meeting can reinforce is recognition that legally prescribed opioid medications play an indispensable role in present treatment of chronic neuropathic pain which is refractory to other therapies. In this context, the recently published CDC “voluntary” guidelines on prescription of opioids in adult chronic non-cancer pain need to be withdrawn immediately and rewritten to make this role clear -- for both peripheral neuropathic pain and many other chronic pain conditions.

In their present form, the CDC guidelines have become a de facto restrictive practice standard that is driving doctors out of pain management and thousands of patients into unmitigated agony. The basis for the guidelines is also scientifically weak and may have reflected professional or financial self-interest bias on the part of some participants in the “Core Expert Group” that supported the guidelines.

Insofar as I can determine, the working group did not include a SINGLE practicing board certified pain management specialist who is actively treating patients. Revisions of the guidelines need to reflect a much more patient-centered frame of reference, with explicit recognition that dose levels must be tailored to the individual patient and that effectiveness is highly variable between patients due to genetic factors which make some people poor metabolizers of this class of medication.

Richard “Red” Lawhern, PhD, became a patient advocate 20 years ago after his wife developed trigeminal neuralgia, a chronic facial pain disorder. He presently supports 20 groups on Facebook with a membership of over 15,000 patients and family members.

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.

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.