The Importance of Pain Management in Wound Care

By Janice Reynolds, Guest Columnist

A recent article by Kaiser Health News on the difficulty of healing chronic wounds caught my attention.  After reading it several times, I was concerned with the message it was sending -- it seemed much like the misleading articles we see on the evils of opioids or how pain management is not being done right.

One of the red flags was the lack of any mention of skin and wound nurses. Or the important relationship pain management has in wound healing.

In the world of wound care, skin and wound nurses are the experts.  They are usually asked to consult by physicians and surgeons in managing wounds. Wound clinics may be run by them or in partnership with a physician. Our local clinic is managed by a skin and wound nurse and a foot physician.

While I never did the certification for Skin, Ostomy and Wound Care, I did manage my hospital’s wound team for a couple of years, so I studied as much as I could.  I also presented at several medical conferences on pain management in wound care. Those are my qualifications for this input.

Like pain management, wound care is very difficult, as there are so many different types of wounds and different ways patients respond to them.

There are wounds from bites (I saw one where a pig took a chunk out of a kid’s calf), diabetic ulcers, peripheral ulcers caused by poor circulation, pressure sores, burns, trauma, and cancer. Some surgical wounds get infected and have to be reopened, or just don’t heal correctly to start with. 

As mentioned in the article, necrotizing fasciitis is difficult to heal and, in extreme cases, amputation is used to stop it. Radiation therapy can cause severe irritation and lead to a skin breakdown. Thrush, fungus, and moist desquamation caused by constant moisture can also cause a skin breakdown. There are so many more.

Pain is a huge issue in the management of wounds.  Entire chapters on pain are included in textbooks on Skin and Wound Care.  Pain inhibits wound healing, increases the likelihood of infection, and creates stress and anxiety.  This all effects quality of life. This is fact, not opinion.

There is pain related to the wound itself and what is called incidental pain – pain that is caused by dressing changes, debridement or other types of medical care. Of course, some patients are unfortunate enough to already have acute or chronic pain from another condition, in addition to the wound itself.

Opioids have always been the core of wound pain management, whether they’re delivered intravenously, orally (pills), or even topically.

I was once expressing frustration to my airline seat partner, who was a physician, on the difficulty I had trying to get my hospital to allow me to try a morphine gel compound which went directly in the wound. There had been several studies which had good results.  He looked at me in surprise and said, “I usually just drip morphine into the wound.”

Providers in wound care are like those in pain management. Some are very good, some adequate, some just barely make an attempt, and then there are those who deny the pain exists, blame the patient, say it only lasts for a minute, and so on.  This unfortunately has changed for the worse.

There are two large issues effecting the healing of chronic wounds and neither are the development of better dressings.  The first, but not the greatest problem, is money. Wound care is expensive.  It can be the cost of the dressing material or the expense of treating a patient at home.  Many insurers are selective about what they will pay for, and patients without insurance are tremendously lacking in adequate treatment.

The hysteria over opioids and pain management in general has greatly affected wound care. Opiophobia, fearmongering, McCarthyism, and my personal favorite -- yellow journalism -- have changed the way some providers look at and treat pain. In the War on Drugs, patients with wounds have also been causalities.    

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. 

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 Chronic Pain Changes Family Dynamics

By Lana Barhum, Columnist

Chronic pain can have a strong impact on the relationships we have with our families. Most of us are glad and appreciative when we have families that help us get through some really tough days and make life more enjoyable. Unfortunately, for many pain sufferers the support of family is lacking.

Chronic pain can make you angry, moody and intolerant.  As a result, we sometimes take our frustrations out on those closest to us.  Sometimes we just want to be left alone and our loved ones, even though they have good intentions, won’t leave us alone.  Further, we can feel guilty for what we put our family through and try to make up for it, often feeling like we fall short.

As a single mother who lives with chronic pain, I feel like I fall short sometimes when it comes to being there for my boys.  I hurt on most days, but on the days where the pain is tolerable, I do everything I can to be there for them. On days when the pain is bad, I just want to be left alone.  I feel guilty my boys don’t have the mother I “think” they need and deserve.

Some days, I tell them I am hurting and pray they forgive me for being irritable, tired and wanting to be left alone. Other days, I feel like a version of myself I can’t be proud of.

It might be something different that gives you guilt and makes you feel like you fall short.  Perhaps you don’t speak up about your pain because you are afraid to be a “complainer.” Maybe you have spoken out, and felt your family wasn’t supportive. Or maybe your family reached out and you just prefer not to be a burden them.

Family Roles Change

Many people with chronic pain feel their families do not understand or believe their pain.  I, too, have felt that way.  This is upsetting because chronic pain is invisible.  It changes from day-to-day and there is no way to prove the extent of it or how to get others to believe it. 

The person who is physically hurting may start taking on a dependent status, which can lead to depression and feelings of helplessness.  Another family member may start to handle the majority of the family responsibilities and start to feel resentful. 

All these factors -- alone and combined -- cause stress on even the best relationships, leading to arguments, conflicts, isolation, withdrawal and discord in the family structure.

Chronic Pain and Marriage

Chronic pain is the worst on couples. Studies show relationships where one partner has health issues are more likely to end compared to those where health is not an issue.

A 2014 study from the University of Michigan looked at 20 years of data on over 2,700 married couples and found that 75% of the marriages in which a spouse had a long-term health problems ended in divorce. Divorce was even more common when the wife got sick. 

The partner in pain isn’t the only one struggling.  In fact, according to the Caregiver Action Network, spouses who become caregivers are six times more likely to become depressed.

It is difficult to adapt when your spouse or partner develops a health condition or gets injured, resulting in permanent pain.  After all, everyday life has changed and so has the future you planned together. Both partners have to make adjustments, which can lead to fear and anxiety.  Healthy spouses can also try to shield themselves from the reality of chronic illness, adding further stress and strain to the relationship.

My Experience

I wish I could share some good advice and personal experiences on how to make family relationships work despite chronic pain. But I can only commiserate.

I was diagnosed with rheumatoid arthritis and fibromyalgia in 2008, and everything went downhill from there.  My marriage didn’t survive chronic illness.  My family didn’t understand and they still don’t. I have been depressed – even suicidal.   I have struggled in more ways than I am willing to admit.

Dealing with lack of support from the people who are supposed to be there for you isn’t easy by any means.  I have been fortunate because I made many new friends since have being diagnosed, who understand my struggles and who have been there for me when I couldn’t rely on family. 

And even when people bailed on me, I learned to support and hold myself up.  I got help from a professional in dealing with my depression and learned to cope with the many challenges chronic illness and pain brought into my life.  I take better care of myself because I need to be there for my boys, and I remind myself daily these experiences make me stronger, wiser and better, with or without family support.  

The Take Away

All families face obstacles, but some just aren’t strong enough to bear the fallout from chronic pain and illness.   The extent of family disruption depends on the seriousness of the pain and illness, as well as the parties involved. In some cases, major health issues bring families together. For others, even the simplest challenges tear families apart.

The fact is, families take work.  And we always have two choices.  We either keep trying or we give up.  Sadly, too many give up.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit 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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

I am a Drug User, Not an Abuser

By Mary Cremer, Guest Columnist

I have chronic pain from Ehlers-Danlos syndrome and Chiari Malformation, a condition in which my brain tissue extends into the spinal canal. I have also had CSF (cerebrospinal fluid) Leaks. Chiari is not well understood and Ehlers Danlos causes constant pain.

Since my symptoms started in 2012, I have had three brain surgeries and two spinal cord surgeries. I take opioids for pain and muscle relaxers to reduce the muscle cramps and spasticity. 

MARY CREMER

The meds reduce the pain to a more tolerable level. Without them I would not be able to work full time as a secretary. Working is extremely difficult, but I take pride in using meds to help better my situation. 

In 2016, I had my fifth surgery and finally had some relief. In a little over a month I tapered off all medications. It was not hard, because the pain had let up temporarily. Last summer and fall were good, but then the winter brought back the pain and other symptoms.  I went back on opioids and muscle relaxers. I continue to search for help and work full time. 

I am still able to get medication, but I am worried about the future. I am afraid of having back spasms causing my brain to herniate again. If this happens, it will mean a major reconstruction surgery. 

I feel if chronic pain sufferers don't speak up for themselves, we will lose our pain control options. People that don't have chronic pain do not understand what it is like to live like this. The media is making this out to be war, when it's not.

I want people to know that, although I am a drug user, I am NOT a drug abuser. I function as an active and productive member of society. Without the opioids and the muscle relaxers, I could not work. I would be at a loss as to how I would live. I could see how people would turn to street drugs or suicide.

Lawmakers continue to impose their ignorance to "save people," but they need to keep in mind that not all users are abusers.  When you think about people using pain medication, consider people like me – a taxpayer, a mother and a wife. Many of us are working. Taking our pain meds away will only result in higher disability rates, street drugs increasing and more suicides. 

I want to remain a valuable member of society. Please remember me.

Mary Cremer lives with her family in Missouri.

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.

An Inconvenient Footnote in the Opioid Crisis

By Roger Chriss, Columnist

The opioid crisis is now a national emergency. President Trump has instructed his administration “to use all appropriate emergency and other authorities to respond to the crisis caused by the opioid epidemic.”

The full strategy is not entirely clear. But so far, prevention, strict regulation and law enforcement are its core features. The Department of Justice recently announced the formation of its new Opioid Fraud and Abuse Detection Unit. The DEA has proposed a further reduction in opioid production quotas. And the FDA is working to reduce the flow of illicit fentanyl in the postal service.

Meanwhile, anti-opioid activist groups such as the Physicians for Responsible Opioid Prescribing (PROP) are pushing for stricter prescribing regulations and reduced prescribing levels.

As PROP stated in a letter to FDA Commissioner Scott Gottlieb, “Until opioids are prescribed more cautiously it will not be possible to bring the opioid addiction epidemic under control.”

Amid all this, people with persistent pain disorders are little more than an inconvenient footnote.

The evidence clearly shows that the opioid crisis is being driven primarily by illegal drugs. Time magazine reports that in a large national survey, 60% of those who reported misusing opioid medication did so without a prescription. “About 40% of these people accessed opioids free from friends or relatives. Among people who developed addiction or other abuse disorders, 14% said they bought them from drug dealers or strangers," Time said.

Moreover, people who are addicted to heroin rarely get their start with opioids prescribed for a valid medical condition. A study in JAMA Psychiatry found that heroin addicts often have a history of abusing opioid medication because “prescription opioids are much more readily available to younger individuals, particularly as an initial drug of abuse, given the common belief that because prescription opioids are legal, they are considered trustworthy and predictable."

Few media reports mention the strict conditions under which opioids are prescribed in pain contracts between doctors and patients. As described in Pain Medicine News, a “Stipulations of Opioid Treatment Agreement” requires that patients on opioid therapy use only one pharmacy, undergo random urine drug screening, and abstain from alcohol.

Yet all of this goes largely ignored. The narrative of the opioid crisis has been streamlined and simplified to the point that chronic pain patients are either part of the problem, or at least getting in the way of the solution. The CDC guidelines and PROP, as well as state laws and regulations, treat pain patients as an afterthought. We are an inconvenient footnote.

But persistent pain cannot be ignored. Its physical and emotional impact is so costly, that a group of economists recently put a price tag on it.  They estimate that avoiding a single day of chronic pain is worth up $145 for the average person. That works out to nearly $53,000 per year.

This means pain management is extremely valuable to most people. The pain of connective tissue disorders like Ehlers-Danlos syndrome and other incurable chronic pain conditions like adhesive arachnoiditis can be crippling. People living with these disorders need to have all options on the table because the worst has already happened and they are trying to survive as best as they can.

The Washington state opioid prescribing guideline states that "in carefully selected and monitored patients, opioids may provide effective pain relief if used as part of a comprehensive multimodal pain management strategy. A combination of pharmacologic, non-pharmacologic, and rehabilitative approaches in addition to a strong therapeutic alliance between the older patient and physician is essential to achieve desired treatment outcomes."

That excerpt is from the chapter on “Chronic Pain Management in Special Populations,” a group that arguably should include people with chronic, progressive, or degenerative disorders.

A similar statement from the CDC or even PROP that long-term opioid therapy can be useful for some patients when other pain treatments are ineffective would help keep all pain management options on the table.

We have a chance to stop the worsening crisis of pain mismanagement that is resulting from well-intentioned efforts to address the opioid crisis. A few words added to the CDC guideline or the position statements of groups like PROP could help chronic pain sufferers avoid the perils of being an inconvenient footnote.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

What Is Patient Advocacy?

By Barby Ingle, Columnist

In the last few years there has been a boom in people wanting to be patient advocates. Not the paid positions that are filled by someone who works for a hospital or medical provider, but those actually affected by chronic pain – patients and caregivers -- who freely volunteer their time, energy, and efforts to help the pain community.

Patient advocates work to support a cause or public policy to improve patient care and better our community. They write to legislators, testify on behalf of pain patients, share social media posts, encourage research, speak up publicly, and talk about bettering the pain community.

Other names we could be called are patient champions, supporters, backers, proponents, spokespersons, campaigners, fighters, and crusaders.

There is a lot of chatter in the pain community about what patient advocates should be doing, so I thought it would be good to point out some things an advocate should not do.

An advocate does not get involved for their own sake. Hopefully, their advocacy helps their own pain care, but that should not be the main goal of their actions.

Advocates should not take on the role to “get even” with someone, whether it’s a doctor, hospital, politician or another advocate. Far too often people get mad because they can’t get the care they need and speak up only to get back at whoever they think wronged them. Being a patient advocate should not be at the expense of others or to seek power and influence.

There are many types of advocacy, but what will ensure success and make a difference is to avoid the pitfalls of advocacy. If you are mentoring others, be sure to have strict confidentiality as health topics are a very sensitive subject. Refrain from abusive conduct, even if the people you are assisting are abusive. Remove yourself if that becomes the case.

Some people just don’t want the help or advocacy you offer. It could be a cultural conflict, mental issue, or just that you don’t gel with them for a variety of reasons. Be okay with that, let it go and help those who actually want your help.

You should be trustworthy and honest in all the actions you take. An advocate is willing to disclose all personal conflicts of interest to those they are advocating for and with, so that any perceived or actual biases are known. We should not ever compromise our personal beliefs while advocating for others.

Advocacy is not creating more conflict or strife. A good patient advocate is going to work to solve problems, not create new ones. Advocates should not try to change what is working, but instead should work to stop unfair practices, abuse, and the under/over treatment of patients. We need to increase treatment options, services, and proper and timely care.

When we remove those barriers, advocates increase society’s ability to offer full opportunities for pain sufferers.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy 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.

I Am an Addict

By Stephanie Whitaker, Guest Columnist

I am an addict. I admit it and I'm not ashamed of it.

I am addicted to life. I am addicted to minimal pain. I am addicted to doing laundry, washing dishes, cleaning the house, cooking, and taking out the trash. I am addicted to grocery shopping and running errands. I am addicted to participating in my kids' activities, going camping, road trips, and visiting quirky little out of the way attractions few people know about.

I am addicted to eating out, going to the movies, and visiting various fairs throughout the year. I am addicted to hanging out with friends, staying up late, and talking about anything and everything.

STEPHANIE WHITAKER

I am addicted to animals, having them, loving them, knowing they will always be there for me and cuddling with me when I'm not feeling well. I am addicted to being dedicated and loyal to my friends, family, and a lover if I should ever have another.

I am addicted to working, being an inspiration to kids through various social groups, and participating in and attending fundraisers. I am addicted to life and everything that it has to offer. If being an addict to all of these things is wrong, I don't want to be right.

Unfortunately, that's not how my life is. I am consumed every minute of every day by pain, nausea, and fatigue. I have to allot my energy each day to do the bare minimum, so that I don't end up in bed for days at a time when I overdo it.

I have to take multiple medications and supplements many times a day to keep my body going. I have physical limitations, dietary restrictions, and minimal contact with the world outside of a doctor's office. Why? Because I am not being treated for the many chronic pain conditions that I have.

Why? Because I am not being treated for the many chronic pain conditions that I have. I am being treated as a drug addict, even though I've never done drugs, have no history of abuse, and have clean toxicology screens every time I walk into an appointment.

This is what is happening in our society because the politicians, CDC, FDA, DEA, big pharma, and insurance companies have decided that we are not worth treating. Our health is nothing but a mere commodity in our country, instead of a basic human right. We have had our dignity, pride, confidence, support networks, even family and friends stripped away because they are under the impression that if we need opioids then we are addicts.

If that were the case, then shouldn't diabetics be stripped of insulin, amputees be denied prosthetic devices, epileptics not receive their anti-seizure meds, cancer patients not get chemo, and kidney failures not get dialysis? What about babies not getting their formula or breast milk to grow and develop properly?

If people with these conditions are not being denied proper treatment to have a high quality of life, then why are we being singled out because we have chronic pain conditions that we didn't ask for or want? If we are addicts, then so is everyone else that needs some form of medication or therapy to survive, grow, be productive, and have a healthy quality of life.

Quit singling out pain patients. The majority of overdose deaths are not pain patients, but drug users that obtain their supply on the streets, not from the medical community. We deserve better.

Yes, I'm an addict. I miss and grieve the all of the things I am addicted to, and will not stop fighting to get them back!

Stephanie Whitaker lives with interstitial cystitis, pelvic floor dysfunction, fibromyalgia, overactive bladder, IBS-C, chronic fatigue, myofascial pain syndrome, pudendal nerve damage, and PTSD -- and all of the anxiety and depression that comes along with them. She is a mother of two who lives in Maryland. 

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.

Stop Torturing Chronic Pain Patients

By Kim Miller, Guest Columnist

Have you heard the stories about people who suffer from unrelenting pain? 

These people, who we'll call "patients,” are trying to have a life whereby their pain is controlled enough to participate in some of life's little pleasures, such as cleaning the house, showering and spending time with family, while understanding that being completely pain free is unrealistic. 

These patients are often treated as if they're asking for something unreasonable. They are not typical patients, but their anomalies have little place in the medical community, like other patients with chronic conditions such as hypertension or diabetes.

Chronic pain patients are typically required to visit their medical providers once each month if they are being treated with opioids.  Along with these regular visits, chronic pain patients are subjected to signed contracts, random drug screens, reports from their state's Prescription Drug Monitoring Program (listing all scheduled medications, dates filled, names of pharmacies and prescribers' names), and random pill counts.  Any failure to comply or meet with these specifications can result in the patient being released or "fired" by the medical practice for breaking the pain contract.

Many of these patients have been subjected to abrupt tapering of their opioid medications or had them completely discontinued. 

The CDC opioid guidelines, the DEA, misinformed legislators, media hype, and anti-opioid zealots have combined to continually attack the nation's opioid crisis by restricting access to pain medications by legitimate, law abiding patients who are following all of the rules. 

This process of restricting medications for patients in need has caused many to suffer needlessly and some to commit suicide.  Even patients who have had no negative side effects from opioids -- after taking them for years or even decades -- are now suffering due to no fault of their own.

The worst part of the current situation is that overdose deaths caused by illicit opioids, such as heroin, street-manufactured fentanyl, and fentanyl analogs like carfentenil (elephant tranquilizer) and U-47700, continue to rise.  Many media stories, as well as government reports and statements, do not differentiate between prescription opioids and illegal opioids when informing the public about the "opioid epidemic."  The misinformed public only hears about opioids causing more deaths, while the picture on the television shows pills in a prescription bottle.

Restricting access to legal opioid medication has no hope whatsoever of curtailing what is an epidemic of non-prescription drugs. 

The origins of the opioid crisis may have roots in the overprescribing of opioids, but a growing number of studies have found that opioid medications are no longer involved in the majority of fatal drug overdoses. Deaths categorized as "opioid related" often involve non-prescription opioids like heroin and illicit fentanyl, or benzodiazepines, alcohol, cocaine, methamphetamine and other substances.  

The vast and overwhelming evidence points to dangerous substances NOT prescribed by a medical provider, yet we're left with continued restrictions on medications needed by pain patients to have any quality of life.

This dangerous counter-intuitive trend not only deprives patients of pain relief, but is leading to a silent epidemic of suicide in the pain community. It is time to rethink the media and political hype, ditch the CDC guidelines, and stop torturing chronic pain patients.

Kim Miller is the advocacy director of the Kentuckiana Fibromyalgia Support Group and an ambassador with the U.S. Pain Foundation.

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 Pained Life: Starting at the Top

By Carol Levy, Columnist

I hear a lot of people say, “My doc is the best.”

It's important to believe that. But sometimes it is better to save the best for last.

I have trigeminal neuralgia, a painful condition that affects the trigeminal nerve around the eye, and was referred to my neuro-ophthalmologist -- let’s call him Dr. Smithson -- by a vascular specialist I had been seeing.

I had no idea that Dr. Smithson was one of the co-founders of the specialty of neuro-ophthalmology.  He was wonderful, not only terrific in his medicine, but a really nice and caring person. I was lucky to have been referred to him.

After two neurosurgeries, one that worked and one that resulted in devastating side effects, Dr. Smithson sent me to Dr. Marks in Pittsburgh for a specialized surgery that was named after him.

Unfortunately, Dr. Marks not only was unsuccessful, but the surgery left me with additional debilitating side effects.

After that, I was sent to California, where Dr. Kaplan did one surgery, and a year later Dr. Yee did another.

I did not know at the time that these doctors were the cream of the crop. All had their names in major neurosurgical textbooks.

From the outside, this may sound good. But from the inside, there was a problem. I was caught in a circle of specialists. I felt none of them could look outside of the circle and see things from a different perspective. I needed fresh eyes, so I went to see a neurologist at my local hospital.

“I came to see you because I need to have someone outside of the group I have been with take a fresh look. Maybe you can see or suggest something they have not thought of,” I told the doctor.

“That’s a good idea,” he said. After an examination, he told me, “I do have some ideas. I am thinking of prescribing a medication, but I want to look into it more. Come back in a month.”

Wow! Maybe somebody has something else to offer. I left the office filled with hope.

A month later I returned to his office, filled with anticipation. The neurologist came into the room and quickly burst my bubble.

“I talked to Dr. Smithson. He said what I wanted to prescribe is not a good idea,” he said.

It was just a medication. The worst that could happen was that it wouldn't work. It was no risk to this doctor, or to me, to at least try it. But Dr. Smithson’s name and reputation outranked everything else.

My doctors are the best. There is no argument there. But I wish I had started with the schnooks. Then there would have been no place to go but up!

My pedigree of the best, the brightest, and the most well-known has hurt me. I also have to explain that one doctor was behind all of these recommendations, so I don’t come off as a “doctor shopper.”

It is a conundrum. Is it worth going to the “lower level” so you have the top doctors in waiting? Or do you go to the top and then have no other options?

Maybe if I started in the other direction, I would have been just as disappointed – and wished I had started at the top.

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.

Do You Use Alcohol to Relieve Chronic Pain?

By Rochelle Odell, Columnist

I’m in a Complex Regional Pain Syndrome (CRPS/RSD) support group and one of our members recently asked if any members were turning to alcohol because their pain medication had been reduced or stopped.

It piqued my interest, so I began researching the topic. There aren’t many current studies or reports, but it’s a valid question since alcohol is much easier to obtain than pain medication.

Alcohol was among the earliest substances used to relieve physical pain and, of course, many people use it to cope with emotional pain.

According to the National Institute on Alcohol Abuse and Alcoholism, as many as 28% of people with chronic pain turn to alcohol to alleviate their suffering.

Another study from 2009 found that about 25% of patients self-medicated with alcohol for tooth pain, jaw pain or arthritis pain.

There is no documented increase in alcohol use by chronic pain patients at this time, although I would hope there are studies in process that further clarify the question and problems arising from it -- especially with opioid pain medication being reined in and so many patients left with nothing to relieve their pain.

There are many reasons why a person may self-medicate with alcohol.

“People have been using alcohol to help cope with chronic pain for many years. Many people also may use alcohol as a way to manage stress, and chronic pain often can be a significant stressor,” Jonas Bromberg, PsyD, wrote in PainAction.

“One theory about why alcohol may be used to manage chronic pain is because it affects the central nervous system in a way that may result in a mild amount of pain reduction. However, medical experts are quick to point out that alcohol has no direct pain-relieving value, even if the short-term affects provide some amount of temporary relief. In fact, using alcohol as a way to relieve pain can cause significant problems, especially in cases of excessive use, or when it is used with pain medication.”

Constant, unrelenting pain is definitely a stressor -- that's putting it mildly -- but I’ve never added alcohol to my pain medication regimen. I was always afraid of the possible deadly side effects, coupled with the fact my mother was an alcoholic who mixed her medication with it. That's a path I have chosen not to go down.

Bromberg also tells us that men may be more likely to use alcohol for pain relief than women, and people with higher income also tend to use alcohol more to treat their chronic pain.

Interestingly, the use of alcohol is usually not related to how intense a person’s pain is or how long they’ve had it. It was the regularity of pain symptoms – chronic pain -- that seemed most related to alcohol use, according to Bromberg.

Those who self-medicate with alcohol for physical or emotional pain often use it with a variety of substances, both legal and illegal.

Researchers at Boston University School of Medicine and Boston Medical Center reported last year in the Journal of General Internal Medicine that in a study of nearly 600 patients who screened positive for illicit drugs, nearly 90 percent had chronic pain. Over half of them used marijuana, cocaine or heroin, and about half reported heavy drinking.

“It was common for patients to attribute their substance use to treating symptoms of pain,” the researchers reported. “Among those with any recent heavy alcohol use, over one-third drank to treat their pain, compared to over three-quarters of those who met the criteria for current high-risk alcohol use.”

“Substance use” (not abuse) was defined as use of illegal drugs, misuse of prescription drugs, or high risk alcohol use. I had not heard of this term before, it’s usually called substance abuse.  Perhaps these researchers were onto something really important that needs further study, particularly with opioid medication under fire.

“While the association between chronic pain and drug addiction has been observed in prior studies, this study goes one step further to quantify how many of these patient are using these substances specifically to treat chronic pain," they added.

What this information shows is that if one is on pain medication, using alcohol or an illegal substance does not make one unique. It is certainly not safe, but it does occur. We are all struggling to find ways to cope with chronic pain, and if someone is denied one substance they are at high risk of turning to another.

Rochelle Odell lives in California. She’s lived for nearly 25 years with Complex Regional Pain Syndrome (CRPS/RSD).

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 Myth of the Opioid Addicted Chronic Pain Patient

By Roger Chriss, Columnist

Prescription opioid use for chronic pain does not usually lead to addiction or to the use of illicit opioids such as heroin. But media reports often say otherwise.

“Opioids can be so addictive that many people develop a desperate need for them even after the pain has subsided, or disappeared. So when they’re turned away by doctors and pharmacies, they look for a fix on the streets,” Fox News recently reported.

Public officials also confuse the issue.

“Most of our constituents with substance-use disorders began their path to addiction after forming dependencies to opioids prescribed as a result of an injury or other medical issue,’ Anne Arundel County Executive Steve Schuh wrote in a letter to Maryland doctors. ‘Their opioid dependence may have led to obtaining illegal street opioids like heroin, sometimes laced with fentanyl, after valid prescriptions ran out.’”

But this is not what usually happens.

“What the media has sometimes missed is that of those people who started with prescription opioids and then went on to use heroin, 75% never had a legal prescription for opioids. They were already stealing or buying the drugs illegally,” Judith Paice, PhD, RN, director of the Cancer Pain Program at Northwestern University told Medscape.

In other words, the reality of opioid therapy for chronic painful conditions is quite different from what media coverage and public officials claim.

In fact, the majority of chronic pain patients never even receive opioid medications. Recent estimates state that between 8 and 11 million chronic pain patients receive an opioid prescription at some point in a given year, with only some of them taking opioids for pain control on a daily basis.

Although that is a large number, it is dwarfed by the National Institutes of Health’s estimate that 25.3 million Americans live with daily chronic pain and nearly 40 million have severe pain. That  includes people in hospice and other end-of-life care, as well as people enduring cancer pain.

Moreover, many of the chronic pain patients who receive daily opioid therapy get there only after having failed many other treatment options, including non-opioid drugs and physical therapy. Opioids are rarely the first choice for treating persistent pain conditions, especially in the wake of opioid prescribing guidelines from the CDC, Department of Veterans Affairs, and some states.

Chronic pain patients are carefully screened, scrutinized, and monitored. They are subjected to risk assessment using the Opioid Risk Tool, required to take urine and saliva drug tests, told to show their prescription bottles and have their pills counted, and given pain contracts to sign. Their prescriptions are verified at pharmacies and tracked through prescription drug monitoring programs. Opioid misuse in any form is readily detected and is far from common.

Therefore, it is a myth that opioid addiction or other forms of opioid use disorder starts with a prescription. Instead, it almost always begins at a young age with the misuse of other drugs, such as tobacco, alcohol and marijuana. About 90% of drug addiction starts during adolescence.

And although most people who are addicted to heroin have previously used prescription opioids, the opposite is not true. Most people on opioid therapy do not become addicted to prescription opioids, and most of the people who do become addicted do not transition to heroin.

But the myth confuses and conflates chronic pain and opioid addiction. And this is having real-world consequences, both for people on opioid therapy for chronic pain and for people with opioid use disorder.

For people on opioid therapy, the problems include forced medication tapers or even termination of therapy. Pain management is an essential part of a variety of diseases and disorders, from the neuropathy of arachnoiditis and multiple sclerosis, to the visceral pain of interstitial cystitis and porphyria, to the musculoskeletal pain of Ehlers-Danlos syndrome. The choice and dose of medication should be a clinical decision made between patient and physician, not a blanket determination made by a guideline, regulation or committee.

Further, chronic pain is fast becoming undertreated or even untreated, which can have major health consequences. Forcing people to live without good pain management only creates more medical problems. 

For people suffering from opioid use disorder, the addiction myth embodies the idea that it is just accidental chemistry. But as Maia Szalavitz explains in her book Unbroken Brain, addiction has three key components: “The behavior has a psychological purpose; the specific learning pathways involved make it become nearly automatic and compulsive; and it doesn’t stop when it is no longer adaptive.”

The perpetuation of this myth has resulted in people not getting effective care, because the focus is on the substance instead of the sufferer.

“If we don’t invest in people and we focus on drugs, we end up creating another polarizing conversation about substances and people will continue to fall through the cracks,” Dr. Joseph Lee of the Hazelden-Betty Ford Foundation told the Minnesota Post.

The myth of the opioid-addicted chronic pain patient needs to be banished before it causes more people to fall through the cracks.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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.

6 Reasons Opioids Get More Attention Than Alcohol

By Janice Reynolds, Guest Columnist

Every day we hear how the “opioid crisis” is spiraling out of control.  Some even claim it is the worst health crisis to ever hit our country.  The response has largely been to restrict access to opioid pain medications and to sue the pharmaceutical companies that produce them.

But what is the real crisis? The elephant in the room that everyone conveniently ignores?

I believe opioids are being used to cover-up and distract from the real addiction crisis, which is alcohol abuse. 

Alcoholic beverages have been with us for thousands of years and are an important part of everyday life. Alcohol consumption has been increasing in the U.S. since the late 1990's and today about 57 percent of Americans drink alcohol at least once monthly, far more than consume opioids. Drinking to excess is usually frowned upon, but has long been treated as socially acceptable, even by the Puritans:

Drink is in itself a good creature of God, and to be received with thankfulness, but the abuse of drink is from Satan, the wine is from God, but the Drunkard is from the Devil.                                                                                                                                                        --  Increase Mather, Puritan clergyman in “Wo to Drunkards” (1673)

Alcohol is the fourth leading cause of preventable death in the in the United States. In 2015, over 30,000 Americans died directly from alcohol induced cases, such as alcohol poisoning and cirrhosis of the liver. 

There are another 88,000 deaths annually from alcohol related causes, including motor vehicle accidents, homicide, suicide, and incidents of poor judgement – such as going out in subzero weather and freezing to death, and infants dying after being left in hot cars by drunk fathers.

Many harms also occur that usually do not result in death, such as alcohol-related sexual assault or date rape, fetal alcohol syndrome, and fetal alcohol spectrum disorders. The World Health Organization reports that alcohol contributes to more than 200 diseases and injury-related health conditions, including alcohol dependence, cirrhosis, cancers, and injuries.

So why is alcohol ignored and the so-called opioid epidemic is hyped? Here are six reasons:

1) Many people drink alcohol. They may only drink “socially” and need a glass of wine or beer to relax, enjoy a sporting event or socialize at a party. Alcoholic beverages are an integral part of mealtime for many people.   

We also have functional alcoholics who are secret addicts.  As a nurse for over 20 years, it was not uncommon for me to have a patient begin to go through withdrawal after 48 hours in the hospital. Usually they deny drinking alcohol or admit to one drink a night. There is also denial by the medical profession about the dangers posed by alcohol, such as addiction specialists who differentiate between heavy drinkers and alcoholics.

Research frequently ignores alcohol entirely. A recent study looked at health conditions linked to Alzheimer’s disease and mentioned obesity, high blood pressure, diabetes and depression. Alcohol was not even considered, even though it has been shown in valid studies to damage brain cells.

2) Alcohol is BIG business.  Profits are immense and generate tax revenue.  Profits for breweries, distilleries and related businesses far outstrip what pharmaceutical companies make from opioids.  We see these monies going not only to shareholders, but government, lobbyists and advertising.

No one complains about a full-page newspaper ad for a brand of vodka, but a commercial during the Super Bowl for medication to treat opioid induced constipation sparks outrage. And no one bats an eye when a story about Maine liquor stores dropping the price of hard liquor is on the same front page with another article on the opioid crisis.

When have you ever seen a stadium named after an opioid or even a pharmaceutical company? Yet we have Coors Field in Denver, Busch Stadium in Saint Louis, and Miller Park in Milwaukee.

3) Problems need scapegoats. In this case we have two scapegoats: people in pain and opioids.  

Prejudices against people in pain have long existed: “It’s all in your head” or “the pain can’t be that bad” are all too familiar. It could also be simple bigotry towards someone different or a lack of compassion. We used to call pain management “an art and a science,” now it is optional and politically driven medicine.

Opiophobia has a long history as well; fear of addiction, fear of respiratory depression, belief that opioids don’t work, and that people in pain are drug seekers. The “opioid epidemic” has opened the gateway for uncontrollable and irrational bigots.

Nearly all the interventions to curb drug overdoses have been directed at people in pain, who are not responsible for the illegal use of opioids. If all prescription opioids disappeared tomorrow, it would have nil effect on the opioid crisis. Addicts would just turn to heroin and illegal fentanyl (if they haven’t already). There are a boatload of ways to get high.

4) McCarthyism: In the 1950’s, Senator Joseph McCarthy went hunting for communists and many lives were ruined. Today, the term “McCarthyism” defines a campaign or practice that uses unfair and reckless allegations, as well as guilt by association. 

Politicians, the media and many doctors are afraid to say anything not endorsing the “opioid epidemic” or supporting people in pain, because it will be held against them.

5) Fear-mongering:  The spread of frightening and exaggerated rumors of an impending danger that purposely and needlessly arouses public fear.

We can see this in the psychological manipulation that uses scare tactics, exaggeration and repetition to influence public attitudes about opioids. This is exactly what Andrew Kolodny and Physicians for Responsible Opioid Prescribing (PROP) are doing, along with formally reputable organizations such as the Food and Drug Administration and professional medical associations.

6) The alphabet soup: The CDC, DEA, and the bureau of Alcohol, Tobacco and Firearms (ATF) have all played a part in distracting us from alcohol abuse.  Although it is a drug, alcohol is not usually covered by the DEA, but is handled by the ATF, which mainly concerns itself with alcohol licensing and collecting alcohol taxes.

The DEA has been totally helpless to stop the influx of illegal opioids like heroin and illicit fentanyl, as well as thediversion of prescription medications. Their survival mechanism is to go after the legitimate use of opioids for pain.  They have become a terrorist organization that is driving providers out of pain management.

In order to cover-up the heavy cost of alcohol abuse, we have seen hysteria driven by politicians and the media. This has resulted in difficulty getting opioids prescribed for pain, skewered facts to support the “opioid epidemic,” the CDC’s opioid guidelines, and what I call the passive genocide of people in pain.

There are many different means by which genocide can be achieved and not all have to be active (murder or deportation). For our usage, genocide means “the promotion and execution of policies by a state or its agents which result in the deaths (real and figuratively) of a substantial portion of a group.” 

Our genocide is passive because it relies on the harmful effects of pain, suicide, withdrawal of treatment, excessive use of over-the-counter pain relievers, malpractice, and the total dismissal of the human rights of people with pain; as well as lies and falsehoods being held as truths to promote this genocide.

This is not to say that alcohol should be made illegal. Prohibition did not work because most people wanted alcohol and it lead to a huge criminal enterprise. It is to say prescription opioids should not be treated differently than other medications or alcohol.  And people in pain should not be used to further an agenda based on fallacious, unethical and immoral sensationalism. 

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.

The Case for Opioid Therapy

By Jordan LaMark, Guest Columnist

I take opioid pain medication and I am not ashamed of it. I refuse to feel guilty for needing medication.

I am not an addict. I do not deserve to be treated like a criminal – and for that matter, neither do addicts. I should not have to jump through hoops, be subjected to intense scrutiny, and constantly be forced to prove how much pain I’m in to receive my medication. It shouldn’t be a battle to receive treatment.

I live with Ehlers Danlos syndrome, a chronic incurable condition that causes daily unceasing pain. The pain wears at me, saps my energy, and severely restricts my functionality.

I also battle many other symptoms -- chronic fatigue, nausea, dysfunction of my autonomic nervous system, and failure of my digestive tract that requires me to be fed by a surgically implanted feeding tube (which is also very painful, and has altered my core muscles and posture). I sometimes need a wheelchair to get around and often cannot leave the house for days.

I spend most of my time dealing with my medical conditions. My pain medication gives me some relief and improves my functionality without negative side effects. I also use many other techniques to deal with my pain, including several forms of therapy, and I’ve had two surgeries to treat severe endometriosis.

Despite all of this, I am a happy person and do as much as I physically can, spending time with my family, going to church and daytime events, even the beach. Now, however, I am afraid that there may come a point when I may be unable to obtain the medication that improves my quality of life.

JORDAN LAMARK

There is no doubt an opioid abuse problem in our nation. However, the answer is not to enact reactionary laws and restrictions that make it harder for patients with a legitimate need to receive their medication. The conversation about opioids has been focused on acute patients and those who have had surgery or an injury, but has neglected to mention the unintended victims of anti-opioid campaigns: chronic pain patients who will most likely need medication for the rest of their lives.

Neglected also is that most of the abuse of prescription opioids takes place outside of the doctor-patient relationship. The World Health Organization tells us the risk of dependence and diversion is low when opioids are prescribed for pain. Studies also show that physician prescribed opioids are not the primary source of diversion and that theft from the drug distribution chain is an important source of illicit pain medication.

The CDC, along with other organizations and federal and state governments, has overstepped its authority by releasing a set of guidelines for opioid prescribing. Although the guidelines do not prohibit the prescription of opioids, they have increased the complexity and effort involved in getting them. This has had the same effect as declaring them illegal. Most doctors that I’ve talked to flatly state that they don’t prescribe opioids anymore.

I recently saw a pain doctor at one of the best hospitals in the country and was told that their policy is to not prescribe opioids to non-cancer patients. When asked what I should do, since in my case other methods either have not worked or cannot be used due to side effects, the doctor said he did not have a suggestion and wished he could prescribe them for me, but was unable to.

Many patients are having their dosages reduced in response to the CDC guidelines, and some are left with the heart-wrenching prospect of having their medication completely cut off. Many are now being forced to undergo monthly drug tests in order to receive treatment, even when there is no reason to suspect abuse. Our criminal justice system treats suspects as “innocent until proven guilty,” but the same logic does not seem to apply in this case.

I have personally had a pharmacist at a major chain refuse to fill my prescription and lie about the reason why, and then make negative comments about it to my face. I have had several doctors express concerns about legal action and increased government interference in opioid prescription, and cite these as reasons for not prescribing.

One pain specialist gave me several reasons that doctors are now hesitant to prescribe opioids. Number one, of course, was public and government pressure, followed by the increased complexity of prescribing and the fear of losing his license.

Another reason cited was the lack of an “equation” to tell doctors what and how much to prescribe. I think that is a faulty argument. Psychiatric drugs, for example, do not have such an equation or rubric --that is left up to the doctor’s discretion, as it should be.

I have been denied coverage for a treatment because my condition was not on my insurance company’s list of those approved to receive the treatment. Someone who had never met me decided he or she knew better than my doctor (and I) what potentially life-saving treatment I could receive.

Doctors often suggest “alternative treatments” such as cognitive behavioral therapy, which is usually not covered by insurance; acupuncture, which is almost never covered; and physical therapy, which becomes very expensive even with insurance if you are going several times a week for months. Medical marijuana is not covered and is prohibitively expensive. These alternative therapies, while worth trying, do not help everyone.  ­

If the medical industry and government are really serious about promoting alternative, non-opioid therapies, then they should be made affordable. Continuing to say “opioids are bad” and promoting restrictive laws does not stop illicit drug use and only hurts those who need them. These decisions should not be made by insurance companies or the government, they should be up to the individual physician and patient.

I have a feeding tube that was surgically placed and has forever altered my body. I have an open wound that causes pain and infections. The surgery carried risk, the act of changing the tube every few months carries a risk, and the tube’s mere presence is a risk. And yet, it’s all worth the risk because it keeps me alive. My pain medication takes the life that the tube has saved and makes it a life worth saving.

The medical industry does not have to bow to public or political pressure. This is the time for doctors and patients to stand up and reject reactionary responses. Do not take away the only relief many of us have.

Jordan LaMark lives with Ehlers-Danlos Syndrome and comorbid conditions, including Mast Cell Activation Syndrome (MCAS) and gastroparesis, for which she has a permanent feeding tube.

Jordan is the founder of Digesting that Facts, a website about living with her various medical conditions that includes educational information and research articles.

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.

Lessons from Dreamland About the Opioid Crisis

By Roger Chriss, Columnist

The book Dreamland: The True Tale of America's Opiate Epidemic by Sam Quinones has become a playbook for many lawmakers, regulators and journalists covering the opioid crisis. It is an award-winning book from 2015 that describes the rise of Mexican “black tar” heroin, pill mills and opioid addiction starting in the 1980’s.

It is not a book about persistent pain disorders or the people who endure them using opioid medications.

Quinones interviews heroin couriers and addicts, as well as prescription opioid addicts. He describes heroin smuggling, heroin distribution networks, prescription opioid diversion, carefully crafted medical opioid scams, and misleading marketing by opioid manufacturers. But chronic pain patients do not appear in Dreamland at all.

Early in the book, Quinones brings up a 1980 research letter in The New England Journal of Medicine and the work of Russell Portnoy, both of which are alleged to have contributed to opioid overprescribing. But the overprescribing does not involve people with chronic pain disorders. Instead, Quinones explains that “in the Rust Belt, another kind of pain had emerged. Waves of people sought disability as a way to survive as jobs departed.”

And overprescribing did not necessarily mean over-consumption. As Quinones states, “Seniors realized they could subsidize their retirement by selling their prescription Oxys to younger folks. Some of the first Oxy dealers, in fact, were seniors who saw the value of the pills in their cabinets.”

Such opportunities were not ignored. More conventional drug dealers moved in and unscrupulous physicians opened drug-dealing clinics that we now call pill mills.

Quinones explains how to recognize a pill mill: “I asked a detective, seasoned by investigations into many of these clinics, to describe the difference between a pill mill and a legitimate pain clinic. Look at the parking lot, he said. If you see lines of people standing around outside, smoking, people getting pizza delivered, fistfights, and traffic jams—if you see people in pajamas who don’t care what they look like in public, that’s a pill mill.”

The importance of pill mills to the opioid crisis cannot be understated.

“It helps that OxyContin came in 40 and 80 mg pills, and generic oxycodone came in 10, 15, 20, and 30 mg doses—different denominations for ease of use as currency. The pill mills acted as the central banks, controlling the ‘money supply,’ which they kept constant and plentiful, and thus resisted inflationary or deflationary spikes,” wrote Quinones.

Dreamland goes on to explain that in rural Appalachian communities an underground economy arose with prescription opioids as currency, supported by scamming Medicaid and Social Security disability. Some addicts funded their habit by shoplifting at stores like Walmart and paying dealers for opioid pills with their stolen goods. Other addicts worked with dealers to scam Medicaid to pay for opioids from pill mills or to get opioids from legitimate clinics using forged medical records.

Opioid addiction was also driven by high school and college sports. Quinones explains that “after the games, some of the trainers pulled out a large jar and handed out oxycodone and hydrocodone pills - as many as a dozen to each player. Later in the week, a doctor would write players prescriptions for opiate painkillers, and send student aides to the pharmacy to fill them.”

Thus, the opioid crisis is a tragic result of a confluence of forces, including heroin sold under a business model virtually impervious to traditional law enforcement techniques and legal opioid pills used illicitly. As Quinones explains at the end of the book, “One way to view what happened was as some enormous social experiment to see how many Americans had the propensity for addiction.”

None of this involves medical opioids being used for pain management in people with chronic, progressive, or degenerative disorders. Quinones frequently mentions “chronic pain” but never defines the term precisely. However, his examples consistently refer to ongoing pain from a workplace accident, sports injury or accidental trauma -- not the persistent pain of a medical disorder. He does not interview pain management specialists or chronic pain patients because that is not the point of the book.

However, he does acknowledge the opioid crisis is having an unintended effect on people with persistent pain disorders. Quoting Quinones, “Patients who truly needed low-dose opiate treatment for their pain were having difficulty finding anyone to prescribe it.”

That is the lesson that Dreamland offers but too few people are learning. The opioid crisis is a dire manifestation of a larger problem of substance abuse. It is not about people with chronic pain disorders becoming addicted to opioids and then turning to heroin, an outcome that is exceedingly rare.

If we don’t understand what this book offers, we risk making the same mistakes that many lawmakers, regulators and journalists keep making. We’ll misunderstand the true nature of the opioid crisis and mismanage the response. And that will harm both opioid addicts and chronic pain patients, two groups that have already suffered enough.

Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society.

Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

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 Importance of Understanding Research

By Janice Reynolds, Guest Columnist

Almost daily we are told that a study shows this or research shows that, a physician makes claims based on research, or the news media blaring “New Study Shows.” 

Even worse, more and more frequently we are seeing providers, government and the media basing their opinions or actions on poor evidence -- or many times the total lack of it.  I have a tee shirt which says: “Show me the evidence and critical thinking.”

It is time for people in pain as well as their advocates to understand research studies and hold accountable those that are cited.

Evaluating research is a little complicated and time consuming, but it is something every medical person needs to do.  More importantly, the media needs to justify their reliance on research and identify that what they are saying is true, rather than something totally lacking in validation and objectivity (which unfortunately is most often the case). 

After all, the media claim to do careful research before doing a story. Politicians should also have accountability for objective truth.

As people living in pain, our arguments and comments are more effective if we show that we know what we're talking about.  It may not change someone's mind if they are opiophobic or dislike and distrust people in pain, but it’s important to try.

I’ve made repeated requests to the Portland Press Herald to give me the citations for their claim that “studies have shown conclusively that opioids not only don’t work for chronic pain but make it worse.” I haven’t changed their minds, but it is ammunition in the battle for actual truth.

These are some of the terms the public and people in pain need to understand:

Correlation and causation: Probably the most important.  Just because something happens at the same time, does not mean one thing “causes” the other.    My husband teaches statistics at a university and the example he uses is when the number of new boat licenses increases the number of manatees being killed. This does not mean boat licenses kill manatees.  This correlation means causation thing is rampant in media stories about pain.

Anecdotes and surveys:  An anecdote is an account not necessarily true or reliable, because it is based on personal experience rather than facts or research.  For every anecdote, there are often many more which tell a totally different story. An example would be: "My son died of an opioid overdose. We have to stop these drugs from killing people." Any death is tragic, but opioids do not in themselves kill people. 

Surveys also rely on someone’s self-reporting.  The one used extensively by the media and politicians is that 3 in every 4 heroin addicts got their start taking prescription opioids. That particular survey relied on addicts to tell the truth, did not not include addicts outside of treatment, and most importunately did not include millions who have taken opioids for pain and never even touched heroin.  Surveys and anecdotes are worthless as evidence.   

Case studies:  These are things that happened to a person, group or situation at a single time and/or place; i.e. a case history.  The CDC makes use of case studies to “prove” in their seminars the correctness of their opioid guidelines.  Case studies are of interest, but are not valid evidence for the same reasons anecdotes are not.

Data mining: This is the process of collecting, searching through, and analyzing a database to discover patterns or relationships. In our case, it usually means they have gone through death certificates, insurance records and the like.  Once again, this is not a source of evidence as there is no way to verify the validity of the data, as well as other confounding factors.  Data mining is the CDC’s favorite method and it has been shown to be highly inaccurate. It does not have a place in medicine, except to develop insights and lead to actual research.

Statistics: These by themselves do not mean much. Researchers need to use the appropriate statistical analyses before publishing them.  Medical providers, media and politicians need to acknowledge what analysis method was used and what the outcomes were.

Qualitative vs quantitative: Qualitative research gathers information that is not in numerical form. For example, diary accounts, questionnaires, case studies and anecdotal accounts are used to gain an understanding of underlying reasons, opinions and motivations. Qualitative data is typically descriptive data and as such is harder to analyze than quantitative data. It can never be “proof.”

Quantitative research looks at numbers, it is the “hard” science. Quantitative research is used to quantify the problem by way of generating numerical data that can be transformed into useable statistics that can be evaluated.

Objectivity: Objectivity means being aware and honest about how one's beliefs, values and biases affect the research process. This also applies to the reviewing, reporting, and selection of research.  The media especially lacks objectivity in their reporting of all issues related to people in pain and the “opioid addiction epidemic”.

Method:  How the study was done; meta-analysis, random controlled trials, non-random controlled trials, survey, cohort or case controlled study, or even expert opinion. The latter is only acceptable when no other research exists on the subject.

Sampling: The number of participants and who they were. A small number has a lower strength of evidence.  My favorite example of a “who” was a study done which claimed to show analgesics caused people to be homicidal.  Their sampling took place in a prison where all the participants were murderers!  Doesn’t take a rocket scientist to figure out this was biased.

Strength of evidence: This is probably the most important term when it comes to research.  There are many different tables used (easy to Google) that show a hierarchy of what is strong evidence, what is weak and what is non-existent.  Even the CDC recognized the evidence for their opioid guidelines was weak to non-existent. Most studies on the opioid epidemic or people in pain are inherently weak because the evidence is so poor.  

Proof:  Research seldom ever provides “proof.”  If multiple studies come up with the same results, then some might call it proof; however it is safer to say “likely.”  When talking about pain, medications, interventions or even addiction, the word “proof” should be off the docket.

Critical thinking: Critical thinking is the identification and evaluation of evidence to guide decision making. Another definition is making reasoned judgments that are logical and well thought out, a way of thinking in which you don't simply accept all arguments and conclusions you are exposed to, but rather question such arguments and conclusions. 

Those who are prejudiced and biased against people in pain or opiophobic rarely use any critical thinking skills at all.  In fact, after a comment I had made on a newspaper article, someone assassinated my character by saying my head was filled with mashed potatoes and I lacked any critical thinking skills whatsoever.  There was more and it was pretty funny.  This unfortunately is characteristic of the media, politicians and general public. No matter what we say or how truthful our comments, they will not hear. 

Evidence based: This means looking at best available clinical evidence from methodical research.  The word term is thrown around lightly and unless you have the actual “evidence” to back it up, it is meaningless. 

Several years ago, I was part of the original Pain PEP (Putting Evidence into Practice) team for the Oncology Nursing Society. We studied pharmaceutical interventions for nociceptor and neuropathic pain in the adult cancer patients. It took us two years to evaluate recent guidelines and research studies, and to write our guidelines based on the strength of the evidence. If you say something is “evidence based,” be prepared to show it.

One last comment on the issue of research and pain management: There are integral difficulties in pain research as people vary in their reaction to pain, the cause of their pain, and how they respond to treatment. Any research that uses the term “chronic pain” is already working with a false premise because there are so many different types of pain that are persistent.  Any research that looks at a “class” of medication such as opioids or antidepressants is also employing a false basis as well.

Pain management is an art and a science, and any attempts to standardize it will only harm people in pain.  

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.

Free Programs That Help Pay for Prescription Drugs

By Barby Ingle, Columnist

I decided to write about the high cost of prescription drugs because I am personally experiencing it and also hearing from other patients who cannot afford their medications. I found a program that can help and wanted to make sure that this information gets out to others who need proper, cost-contained, and timely access to care.

Last year I had my first experience with abandoning a prescription at the pharmacy. I developed asthma symptoms and was given a first-time script for a bronchodilator inhaler medication. My primary care provider gave me 2 free samples in his office and warned me that getting the inhaler could be expensive.

When I went to pick it up the first time, I learned that my insurance co-pay was more than $100. I am doubly insured through a group health plan/PPO through my husband’s insurance, as well as having Medicare as my secondary. If I am having trouble financially with my co-pays, then I know others must be as well.

I just couldn’t afford the inhaler and told them to put it back on the shelf. That was when my Walgreens pharmacist suggested that I Google a free savings program like WellRx and see if they had any discounts for the medication I needed.

I did find a discount card online at WellRx.com that helped save on the inhaler and I was able to fill the script after all. I would have never thought of doing something like this without the suggestion of my amazing pharmacist. The WellRx savings program works well for insured people with high out-of-pocket costs like me.

I have faced this situation two more times, one with a medication I was taking daily for years. The co-pay went up so high that without a savings card, I would not be able to pay for it.

The other medication I had to abandon because I couldn’t afford it, even though the savings program provided 50% off what my insurance was going to cover. Nevertheless, it was worth the look to see if I could find a discount. My provider had to substitute the medication for a different one that I could afford, although I am not sure if it worked as well as the one he originally prescribed.

I know how awful and embarrassing it feels to have to abandon a medication at the pharmacy, while you work to come up with a way to pay for it and know that you may never be able to pick it up. Now, I have my pharmacist price the medication through insurance and the WellRx program to see which is less expensive.

Recently a study was published in the Annals of Internal Medicine that showed a direct correlation between the amount of a patient’s out-of-pocket cost and the likelihood of a prescription being abandoned. They concluded that when patients have a co-pay of over $50 they are four times more likely to abandon their prescription than patients who only owe $10.

Leaving a prescription at the pharmacy and failing to follow a doctor’s instructions can lead to major health challenges, such as a condition worsening, increased side effects and symptoms, therapeutic failure, increased medical costs, and in some cases even death. A 2008 Harvard prescription study suggested that opiates, anti-platelets and statins were the least likely to be abandoned, while insulin and proton pump inhibitors were more likely to be left behind.

This is not a new issue for pharmacies, but it has become more common over the past few years. Besides cost, some other reasons for abandoning medications at the pharmacy include e-prescriptions, drug strength, taking the medication for the first time, and not understanding why the medication was prescribed.

But for me and many others, it all comes down to cost. Studies show that the higher the patient’s responsibility financially, the greater the risk of prescription abandonment. The second highest reason for abandonment is younger customers who are wary about the trying a new medication.

The take away for me is that prescription discount cards and pharmaceutical coupons can increase medication compliance, improve patient health, and lower the cost of medical care. I know that by getting the cost down for my medications, I will be more likely to comply with my doctors’ instructions.

The WellRx program I used was free. I wasn’t sure how it was going to work the first time, but the pharmacist just said print the savings card and bring it back. He did the rest for me. He knew exactly how to ring it into their register and didn’t seem to bat an eye or look down at me for using a savings card. They also have an app for Apple and Android phones for those who prefer everything digital.

WellRx also allows you to compare what the price will be at different pharmacies in your area and to search for the best discounts. It is quick and easy, and their program is accepted at more than 60,000 pharmacies across the country. They offer an average savings of 45% off the prescription cost and some of their medications are eligible for savings of up to 80 percent.

Another resource that can help is the Partnership for Prescription Assistance, which helps uninsured and underinsured patients connect with hundreds of public and private assistance programs that provide free or low-cost prescription drugs.

LowestMed has a free mobile app that allows you to research and compare prescription prices at pharmacies in your area. You then show the discounted price on your phone to a participating pharmacy. The price you see is the price you pay.

I love being able to pass savings tips on to others. Prescription discount programs are a great tool not only for the chronically ill, but also for healthy people who have an unexpected medical problem and need help paying for their prescriptions.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy 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.