Painful Opioid Statistics

By Roger Chriss, Columnist

The opioid crisis continues to worsen, and media coverage continues to be overly simplistic.

Vox recently reported the U.S. “absolutely dwarfs” all other countries in opioid prescriptions, in a story headlined “America’s huge problem with opioid prescribing, in one quote.”

"Consider the amount of standard daily doses of opioids consumed in Japan. And then double it. And then double it again. And then double it again. And then double it again. And then double it a fifth time. That would make Japan No. 2 in the world, behind the United States," Stanford psychiatry professor Keith Humphreys told Vox.

Although Humphreys’ statement is accurate, it is a misleading oversimplification that omits important context, including the rising rate of heroin and fentanyl-related deaths, and the shifting landscape of opioid prescribing.

First, this statistic represents an average (or mean). It does not include the variance, a measure of how many people use what quantity of opioids. The average person in the U.S. does not use any opioids at all. But people suffering from opioid addiction may use a large quantity of opioids every single day of the year.

In statistical work, reporting an average without the variance is considered sloppy at best, misleading or manipulative at worst.

Humphreys’ statement also fails to distinguish between the legal and illegal use of “pharmaceutical opioids,” a convenient term to refer to legally manufactured opioids, regardless of whether they are used for valid medical purposes, or diverted, shared or sold.

In other words, the much higher number of pharmaceutical opioids in the U.S. compared to Japan reflects both medical use and misuse.  

Further, this statistic assumes that Japan’s level of pharmaceutical opioid consumption is somehow better. In fact, Japan has a well-documented history of undertreating pain because of fears about opioid addiction. Pain is so poorly treated in Japan, according to The New York Times, that the government launched a campaign in 2007 urging patients to request pain relief, with hospital posters urging patients to “Tell Us About Your Pain.”

Japan continues to struggle with high levels of chronic pain. A 2015 review found a “high prevalence and severity of chronic pain, associated factors, and significant impact on quality of life in the adult Japanese population."

The Vox article also fails to point out that opioid prescribing in the U.S. peaked in 2010 and has been declining ever since. Yet opioid addiction and overdose deaths have been steadily rising, fueled largely by illegal opioids such as heroin and illicit fentanyl.

Vox is not alone in oversimplifying a complex problem. CNBC, for example, reported last year that “80 percent of the global opioid supply is consumed in the United States.”

Many others have repeated that claim, including Missouri Sen. Claire McCaskill, who recently tweeted that, "We have 5% of world population. 80% of opioids."

PolitiFact ran a fact check on McCaskill’s numbers and found them “greatly exaggerated.”

“While the United States is clearly the largest consumer of opioids, it, at most, accounts for roughly 30 percent of global consumption. We rate McCaskill’s claim False," PolitiFact said.

This is a significant issue in the opioid crisis. While some journalists, politicians, and even physicians name villains, people suffering from opioid addiction continue to get substandard treatment. And people who benefit from opioid therapy are struggling more and more to find physicians willing to prescribe and pharmacies willing to fill opioid prescriptions so they can have a reasonable quality of life.

No one is suggesting that the U.S. needs more opioids, particularly in the acute care setting. Opioids should be prescribed with close monitoring by physicians with experience in pain management. The research literature and public health studies agree that over-prescribing occurred, especially in pill mills and dubious pain clinics. In addition, drug theft and diversion are huge problems.

So while a statistic that invokes multiple doublings for comparative purposes sounds impressive, its context is much more important. We need to focus on the crisis as it really is, without exaggeration, if we hope to have meaningful progress ending it.

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.

Chronic Pain in the Workplace

By Lana Barhum, Columnist

Unless you have lived with chronic pain, you cannot begin to fathom the physical and psychological torture many people in pain go through.  Chronic pain is an issue so often ignored in the workplace.

About a year ago, I wrote an article about “presenteeism,” which basically is the act of attending work while you are sick.  But presenteeism isn’t just showing up for work when you have a cold or the sniffles, it is showing up to work every day despite pain, fatigue and other symptoms that come with chronic pain and illness.

Presenteeism was recently researched by the Global Corporate Challenge (GCC), which found that while employees with chronic health conditions took an average of just four sick days a year, they confessed to being unproductive at work an average of 57.5 days a year.

The GCC report estimated that the cost of presenteeism was 10 times higher than absenteeism. Absent workers cost employers in the United States, United Kingdom and Australia about $150 billion a year, but those who came to work and were not fully productive cost them $1,500 billion.

The study’s authors noted the importance of companies to improve productivity by putting their focus on reducing presenteeism.

I am not sure employers know or even care how many of their people are dealing with chronic pain challenges.  And if they do, what expectations do they have of these employees? Do they even understand the difficulties of being productive when you are physically hurting?

Chronic Pain and Lost Productivity

According to another report from the Institute of Medicine Committee on Advancing Pain Research, Care and Education, chronic pain is costing the U.S. economy between $560 to $635 billion annually in healthcare costs and lost productivity. While many employees who live with pain continue to work, they struggle to be productive. 

One possible solution – opioid pain medication – is no longer easily accessible, even for pain patients who don’t misuse prescription drugs and who want to have normal, productive lives.

Research has shown that about two million Americans misuse opioids, and a good chunk of them wind up in emergency rooms. But that statistic ignores the millions of people that need pain medications and don’t abuse them.

Too many prescribing guidelines -- and fear of DEA oversight -- keep our doctors from writing prescriptions for pain medication, even for medicines that are relatively safe and have low risk of addiction.  Guidelines and insurance reimbursement policies have basically taken discretion away from responsible doctors in managing patient pain care.

Some chronic pain sufferers won’t even ask their doctors about pain medication because of the stigma attached to opioid misuse and abuse. Up until recently, I was one of them. I wouldn’t ask my doctor for medication to manage my pain because of that very stigma.  But my pain levels got so bad I had no other choice.  And my doctor, like so many others, was wary of writing a prescription and didn’t give in until I was practically begging. She explained she trusted my judgment, but was limited in her options due to government guidelines.

Working with Pain

The biggest concern I have on an almost a daily basis is how long I will be able to continue working. Will my boss get tired of the mistakes I make on the days I am hurting and my focus is off due to pain and lack of sleep? While my employers know I live with pain from rheumatoid arthritis and fibromyalgia, they really don’t care – most likely because my disability is invisible, but also because it isn’t their problem – it is mine.  

I am not sure most employers or coworkers understand the overwhelming and difficult responsibility of holding down a full-time job when you live with chronic pain.  Even if your employer provides accommodations – like workspace adjustments and options to work from home on occasion – the basic requirements of the job can still be great when you are hurting.

In an ideal world, employers would offer options for pain management on the job -- in the form of wellness programs and workplace accommodations – so we could work at full capacity.  Employees who feel supported will seek out all available help, feel better, and function better on the job. 

But most employers have yet to recognize the crucial role they play in helping to manage the pain epidemic in this country.  They see chronic pain as a personal problem, rather than a business dilemma.   Until that changes, we are on our own to suffer in silence and figure out how to work better, despite the pain that we endure. 

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother who lives with rheumatoid arthritis and fibromyalgia. 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.

Don't Forget Chronic Pain Patients During Disasters

By Janice Reynolds, Guest Columnist

With the recent hurricanes in Florida and Texas, there was an Associated Press story you may have seen. 

Titled “Hurricanes Drive Addiction Issues into Public Square,” it dealt with the plight of people addicted to alcohol, tobacco, pills or heroin when disaster strikes.  While the article was not the “yellow press” we often see in the coverage of opioid medication, it did err by the sin of omission.

People with all sorts of health problems suffer during a natural disaster. Not only did the AP story not mention this, I didn’t see it covered elsewhere in the national news.

People living with pain are likely to be the ultimate casualties.  Anxiety and stress increases pain levels, and some pain sufferers will be difficult to evacuate. 

Most critical is the loss of treatment.  If a patient is taking opioids as part of their pain plan, they may not be able to take their medication with them (when leaving in a hurry) and getting a new prescription or even someone willing to fill it would likely be impossible. 

In a shelter, theft would be a worry.  This applies to non-opioid medication as well.  Non-pharmaceutical interventions might also be unavailable.  If pain was already poorly managed -- as it often is -- it would be even worse.

As we know, pain has many harmful side effects that lead to other health emergencies, including suicide. People in pain during a disaster are going to be even more vulnerable than usual.

a hurricane harvey evacuee (texas national guard photo)

All chronic health problems are affected by natural disasters.  In the aftermath of Hurricane Katrina in 2005, thousands of cancer patients had their treatment disrupted.  Records were lost and many did not know their treatment protocol or where they were in it.  Some did not even know the type of cancer they had.

Of course, medication for other conditions was lost as well. People living with heart conditions, diabetes, kidney failure, AIDS, high blood pressure, COPD, multiple sclerosis, Alzheimer’s and many other chronic health issues need special medications or treatments. For many, pain is a part of their disease as well.

Patients in hospice or nursing homes are especially vulnerable. Eight elderly nursing home residents in Florida died this week in sweltering heat when the facility they were in lost its air conditioning during Hurricane Irma.

The media has an ethical obligation to address the problems of natural disasters related to chronic health problems, especially for chronic pain, and not just limit their concern to addicts.  It is the right thing to do.

Janice Reynolds is a retired nurse who specialized in pain management, oncology, and palliative care. She has lectured across the country on pain management and co-authored several articles in medical journals. Janice lives with persistent post craniotomy pain and is active with The Pain Community.

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.

Living With an Invisible Monster

By Marcie Ann Dillard, Guest Columnist

I live with an invisible monster that consumes both body and mind. A monster that steals the ability of children, mothers, fathers and grandparents to sit, stand or walk. A monster that consumes finances, destroys friendships, marriages and families.

I say invisible monster because when I speak these three letters -- RSD --- which stand for Reflex Sympathetic Dystrophy, I am faced with the blank stares of the ignorant.

What is such a thing I myself in 47 years of living had never heard of? How could I have not known of this monster that stalks me like a crouching lioness after a simple leg fracture?

She pounced suddenly and fiercely, feeling her teeth, her bite sink into my body, setting my flesh on fire in moments. Now in the grasp of a beast that respects no one, she sinks her claws deeper. Her death grip no one will ever escape.

Going from doctor to doctor, I can feel her but she goes unseen even after dozens of MRIs, CT scans and x-rays. The searing unseen pain forces me to look for freedom from what I now understand to be the most painful disease known to man.

I begged for those sworn to help me to release me from her grasp, but ignorance -- mine and theirs -- gave her time to continue her devastation.

I marched through this life boldly; a mother, wife and business owner, never giving a thought to the day that would end. Then that day came. The only evidence often of her existence was the life stealing pain, and the integrity of my words lost among strangers.

The skeptical looks of the medical community as I once again describe the effect her grasp has on my body.

Through the tears of pain and hopelessness, the joy of living is veiled in agony. The blank stares of loved ones when I choose to be honest about what I daily experience. Self-confidence fades, the beat of the drum I confidently marched to become unclear, self-worth gone, as one by one the things that made me Marcie Ann become painfully impossible feats.

She never stops chewing my flesh, the nerve twitches and the muscle spasms a constant reminder that I remain helpless prey to a ruthless predator.

If I spoke these six letters -- CANCER -- I would be met with the sympathy of the community. Not to offend those who suffer from that monster or have suffered a loss to it, but perhaps someone would run a marathon in my honor or host a fundraiser to help me secure lifesaving treatment.

If I said it was a terminal illness there would be no misunderstanding of the impending outcome. But with chronic, progressive and incurable pain, the well of sympathy quickly dries.

Silent suffering.

In this lifetime, the lioness will never deliver her final blow and end my suffering .

Marcie Ann Dillard lives in Washington state. She was diagnosed with Reflex Sympathetic Dystrophy in 2012, two years after her symptoms began.

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.

Learning How to Live with Chronic Pain

By Barby Ingle, Columnist

When I became so debilitated by chronic pain and doctors could not figure out what was going on, I could no longer hold my life together. It was a minor auto accident that triggered crazy symptoms that didn’t make sense to me or my doctors.

When the first symptoms of Reflex Sympathetic Dystrophy (RSD) began, I thought I was being ridiculous. The pain was overwhelming. It took all of my attention and energy just to be able to focus. It felt a burning fire in my face, neck and shoulder, and my skin became discolored. I also started having balance issues and falling.

I remember at a practice I was working with a male cheerleader and we did a stunt. Everyone around us was yelling, “Coach, stand up straight. What are you doing?”

I kept saying I was straight, but then I looked down. I didn’t even know how he was holding me up in the air. I was in the weirdest position; legs bent, leaning forward, arms not in the right place. Until I saw what my body was doing I had no idea what everyone was so upset about. 

I was coaching, heading to counseling appointments, chiropractors and neurologists, and sleeping in my office or wherever I could find a place to sleep. It wasn’t solid sleep. It was for 20 to 45 minutes at a time. I was overwhelmed physically and emotionally, not being able to coach like I wanted, but still trying not to let my team members down.

I wish I could go back and help them understand what I was going through. I wish I had let go of my job sooner so that they could have had a better year. I didn’t know that what I was dealing with was not going to be as easily overcome as endometriosis was. That was a struggle that made me believe everything was just a challenge that I could get past. Not this time. It was going to take years, financial strain, and learning new life skills. I just didn’t know it. 

I was no longer able to handle my dream job of coaching cheer and dance at a Division I-A university. My business started to crumble and eventually closed. My husband stopped supporting me emotionally and physically. I didn’t have the energy to take care of me and him any longer. One good thing that came from it was that after our separation he found God, and was baptized into the Catholic Church the next Easter.

The biggest reason our marriage fell apart was he had me feeling that it was all in my head, and tried to convince my family and our friends of the same. My psychologist and psychiatrist both told me he was wrong. What I had was situational depression and they assured me what I was going through was normal. They had faith in me and helped me get faith back in myself. 

We began marriage counseling before the accident because of our struggling relationship, but that was no longer an issue because the relationship was over. We were divorced within 3 months of filing for separation. Now I needed help getting my new life in order and to continue counseling, until I felt I had the life tools I needed to be the best me I could be.  

I rated the physical pain I had from the accident in the beginning as a level ten. I did not think I could take anything worse. But as each surgery or procedure was performed and the pain only worsened, I wanted sometimes to have that first pain back.

As our bodies get “used to the pain,” it sometimes gets easier to manage and deal with. With each additional trauma and spread of RSD, the pain I thought was unbearable becomes a livable level. But I wasn’t living.

“Reflex” is any process in your body that automatically goes haywire. “Sympathetic” is your sympathetic nervous system, which makes you feel like you are on fire and you can’t put it out. “Dystrophy” is the loss of muscle and bone, which left me in a wheelchair for many years.

As an athlete, it was difficult to understand how working out and pushing myself were making me worse, but it was. Pushing myself too far taught me that it can cause damage. I realized that doing this was creating further damage to my body and pain pathways. I learned that trying smarter is more important than trying harder.

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.

A Pained Life: The “I Dunno” Answer

By Carol Levy, Columnist.

“I dunno.”

That phrase feels like the bain of my existence. Most of us have heard it.

My brain stimulator implant is experimental.  I was told I'm just the 13th person in the world to get it. It was in for over 20 years, but recently stopped working. Until it failed, I had not been aware just how much benefit the stimulator had given me. I was still unable to work -- the eye pain from my trigeminal neuralgia is too bad -- but I was able to do a lot more things before the pain became unbearable. Once the stimulator failed, I was back to where I was originally,

I asked my neurosurgeon “Why did it fail?”

He shrugged his shoulders. “I dunno.”

As it failed, I was getting some horrific “tic-like” pains. My pain doc ascribed them to anaesthesia dolorosa (phantom pain). They were very different in intensity and sensation from the usual pain. They were odd spontaneous sensations, usually an intense itch in a small area under my nose (an area that was not a part of my trigeminal neuralgia).

Neither my neurosurgeon nor my pain doc could explain why this was happening. My feeling was that maybe the sensory cortex, where the implant was placed, might be remembering the stimulation and causing the pain.

When I asked, they gave the same answer. "I dunno.”

I searched the internet for a sensory cortex specialist. I found one and sent off an email. “Does the sensory cortex remember?” I asked, explaining about the implant, where it was, what it was supposed to, and the weirdness of the pain.

He was very kind and replied almost immediately. “I dunno.”

The “'opioid epidemic” has harmed many people in the chronic pain community, who either no longer have access to opioid medication or the amount that had been helping. I talk to these people and read what they write in support groups.  

“My doctor reduced the amount of opioids I was on,” they say. Now they can’t work, clean their homes, take care of their children, or go on disability. Others say their doctor now refuses to write any more prescriptions for a medication they were taking for years.  

Invariably, the end of the conversation with the doctor is pretty consistent. “What am I supposed to do now?”

“I dunno.”

Often we ask our physicians why we have the disorders we have, what are the standard treatments, and if they might help us. Too often we get the “I dunno” answer.

I am not sure what it is about pain vs. so many other health conditions, but “I dunno” seems to be the answer too many times for too many of our questions.

As long as pain is a distant cousin to cancer, diabetes and other “major” health problems, we will be the proverbial 4th cousin twice removed. The medical community and government will be happy to just pat us on the head, say “I dunno” and hope we disappear.

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.

How Chronic Pain Killed My Husband

By Meredith Lawrence, Guest Columnist

So much has been written about the opioid epidemic, but so little seems to be out there about what living with true chronic pain is like. My husband, Jay, lived and died in incredible pain at the age of 58.  As his wife, I lived that journey with him. 

Jay is no longer here to tell his story, but I want the world to see what I saw.  I want you to know how he went from working 60 hours a week doing hard physical labor, until his pain grew worse and he could not even get out of a chair on his own. 

I want you to know the deterioration Jay went through over the last ten years. I want you to know what a good day and a bad day is like when you live with chronic pain.  I want you to know exactly what happened when the doctor decreased his pain medication. And I want you to know how my husband finally made the decision to commit suicide. 

I want people to understand that when chronic pain runs your life, eventually you just want the pain to stop. 

First a bit of history.  I met Jay in 2005, when we both stopped drinking.  Two years later, Jay began to lose feeling in his legs and started having falls, as a result of compressed nerves in his spine. The pain was so bad Jay had to stop working and go on disability, which started his depressive episodes.

JAY LAWRENCE

Jay had a series of lower back and neck fusion surgeries.  This was when he was first prescribed painkillers, antidepressants and anti-anxiety medications.  From 2008 to 2011, Jay tried various treatments to control the pain that lingered even after a third back surgery.  These included steroid shots, nerve blocks and a spinal cord stimulator.  Ultimately he had a drug pump implanted that delivered morphine, in addition to the pain pills he was being prescribed.

In 2012, Jay was diagnosed with trauma induced dementia.  I believe that diagnosis was right, based on his symptoms, but not all of the doctors agreed.  Some believed the confusion was due to high doses of morphine and/or his sleep apnea.  

By 2016, Jay’s confusion and memory issues were increasing. He was on a steady dose of 120mg morphine daily, in addition to the medication he was receiving from his pain pump. 

Jay’s depression seemed to come and go, depending on the day and his pain levels.  He was weaned down on his Xanax to 2mg a day to help him sleep. He was aware of the risks of combining Xanax and morphine. 

JAY AND MEREDITH LAWRENCE

Let me tell you what a good day was like before they changed his medications. I worked a full time job from 2 pm to 10 pm five days a week. I would get home, and Jay would have my coffee ready for me at night.  We would stay up and watch TV until 2 or so.  When it was time for sleep, I went to bed and he slept in his recliner.

We started sleeping apart after his first surgery in 2007. He was more comfortable sitting up in the chair, but could never sleep more than three hours at a time.  He knew sleeping in bed would just keep me awake. 

A good day always meant it was not cold or raining.  On a good morning, he would be up first and get coffee started.  He would take our two miniature pinchers outside in the yard on their leash for potty time. 

We usually had at least one appointment a week, but if not we could have a nice quiet morning.  That meant coffee in front of the TV.  After a couple of hours of that, he might switch over to playing his computer games, but he was never far from his chair. 

A typical adventure for us would involve going to Walmart.  Jay was not able to walk through the store, but he hated using the handicapped carts. I could always see a look on his face when he had to do it.  After going to the store, we might have lunch or an early dinner at Steak n Shake or Cracker Barrel.  It always needed to be some place familiar and comfortable for him.  More than once we sat, ordered and then took our food home because he was in too much pain. 

In the summer we might walk the dogs after dinner.  Just a quick two block walk, but a lot of times he would have to stop halfway and go back home.  A couple of times I had to go get the car and pick him up because his legs just would not support him anymore. 

A bad day was awful for me to watch, and absolutely horrible for Jay to live. It meant no real sleep, just catnaps in the chair whenever he could.  He always made coffee for us, but on a bad day he would forget to add coffee to the coffee maker and we would just have hot water.  The pain was so much he was just distracted. 

On many bad days, I would look over and see tears just running down his face because he was in so much pain.  It also made Jay’s depression worse.  We spent many cold winter nights talking about how much pain would be too much and would make life not worth living.  It is the most horrible feeling in this whole world to hear the person you love most talk about ending their life. 

In January, 2017 Jay’s pain clinic decided they could no longer prescribe the high doses of morphine he was on.  In addition, they were not going to continue seeing him if he decided to stay on Xanax.  The Xanax was prescribed by another doctor, but they did not care.

I begged the pain doctor -- yes, literally begged -- for some other option. The doctor said that if Jay continued the Xanax he would no longer see him.  He would not give another option for medications, and at one point even said that most of his patients with pain were “making it up.”

The last thing the doctor said to us will stick with me forever.  He said, “My patient’s quality of life is not worth losing my practice over.”

When we left that day, we were barely in the car and I knew what Jay was going to say to me.  I will never forget how sad his voice was when he told me this was it for him. He was not going to continue to live like this.

Through the month of February, as Jay’s medication was decreased, we spent time doing things we did not normally do.  We went out on Valentine’s Day, he bought me the first jewelry he had bought since my engagement ring, and we went out to a fancy restaurant for dinner.  Jay tried to cram in as many good memories as he could into that last month, but I knew it was costing him.

Jay’s next doctor’s appointment was scheduled for March 2, and we knew they were going to decrease his medications again.  The night before, he woke me up to tell me it was time.  I knew what that meant, but I tried to be strong for his sake.  We talked all night long about what it meant, and how it should be.  It was the saddest, strangest, longest night of my life. 

Jay knew he did not have enough pills to kill himself.  He also knew that if he were to try and purchase a gun, they would not sell it to him.  It would have been almost obvious what he was going to use it for. 

In the end, I bought the gun that Jay used -- and yes, we talked about the ramifications of that action.  We went to the park where we had renewed our vows in 2015.  We talked in the car for a while, and then we sat in the same place we had cut our wedding cake.  I was holding his hand when he pulled the trigger. .

Through the shock and horror, my immediate feeling was one of relief for Jay. To know that he was finally out of pain was a weight lifted off both of us.

Because I purchased the gun that Jay used to end his life, I was charged under our state's assisted suicide law.  This charge was later reduced to reckless endangerment, and I am currently on probation. People close to me want me to be quiet about my role in Jay’s death, and I was at first. But I cannot continue that way. 

I know Jay wanted me to put his story out there.  I know he wanted people to know what it was like to live with the pain he lived with daily. When the doctor took away Jay’s medications, they took away his quality of life. That was what led to his decision. Jay fought hard to live with his pain for a long time, but in the end fighting just was not enough. 

Something has to be done to wake up the doctors, insurers and regulators to make them see pain patients as real people. People with husbands, wives and children that love them.  People that are suffering and just barely holding on. 

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.

5 Reasons to Max Out on Twitter for PainWeek

By Margaret Aranda, MD, Columnist

More than ever, you need to be on Twitter this week if you love to advocate for pain patients. That’s because PainWeek begins Tuesday, September 5th and runs through Saturday, September 9th at the Cosmopolitan Hotel in Las Vegas.

You won’t find many patients at PainWeek, but there are plenty of doctors. PainWeek is the nation’s largest annual conference for healthcare providers who practice pain management. Over 2,300 physicians, nurses, pharmacists, dentists, psychologists, and social workers will attend seminars on topics ranging from analgesics of the future to opioid constipation to a debate on whether urine drug testing is necessary.

Why should you care about PainWeek and why should you be maxed out on Twitter?

Tweets to #PainWeek are going to get a lot of eyeballs, not only from PainWeek organizers, but doctors, pharmaceutical companies and the news media. It's a good opportunity to show them what pain sufferers are feeling and thinking.

Tweeting is also a great way for patients to spread information and awareness about chronic pain to new pairs of eyes. When you do that, it’s called an "impression.” When someone comments or replies to your Tweet, that's an "engagement.” And when you get a “Retweet” – also known as an #RT -- that's the biggest compliment a Twitterer can give to a fellow Twitterer.

Here are 5 ways pain patients can use Twitter:

1) Advocate: The more people see your Tweets, the more you empower people to step out and be bold for themselves and for others that are suffering in pain. Use uplifting images, music, or quotes interspersed with your Tweets to help get positive attention.

2) Prevent Suicides: The ultimate goal of an advocate is to prevent the most severe outcomes of unrelenting, persistent pain. Those would be patient suicide, spousal suicide, and physician homicide. If we can spread the word about these emerging problems, we can help others hang onto their lives until the nation finally recognizes what is happening in the pain community. 

3) Use Hashtags: Worldwide patient advocacy can reign on Twitter. Try to use 6 to 8 hashtags per Tweet. In addition to #PainWeek, here are some great hashtags to use for the widest outreach:

#bedridden #broken #ButYouDontLookSick #chronic #chronicillness #chronicpain #ChronicPain #disabled #Disability #edRecovery #epatient #ehealth #HomicideDue2Pain #IAmNotANumber  #invisibledisability #invisibleillness #livelife #MedEd #MedX #NoCure #opioids #opioidcrisis #pain #PainManagement #patients #PatientEngagement #PatientExperience #PatientsFirst #PatientsIncluded #PatientsLikeMe #patientsafety #PatientsUnitedForDEAReform #ptsafety #spoonie #Spoonies #SpoonieProblems #SpoonieSpeak #StoriesNotStigma #suicide #SuicideDue2Pain #SupportVeterans #Vets #Veterans

4) Grow: What if every one of us had 10,000 followers each? It's one thing to have something to say, and another thing to show it to as many pairs of eyes as possible. Twitter is very reciprocal, so follow everyone who follows you.

For the same reason, if someone Retweets you, try to Retweet back or at least “like” a few of their Tweets. That's Twitter's culture. It’s reciprocal. 

5) Inspire and be inspired. We learn and grow every day. Sometimes we teach and sometimes we learn from our students. If you love to write or advocate for patients, consider starting a free blog where millions of authors go: Wordpress.com. This way, when you Tweet, it could be one of your own articles, and you can drive traffic to your own website by Tweeting your blog’s address.

#PainWeek is poised to be the most Tweeted pain meeting of the year, so join in on the fun!

"Be empowered to empower." 

Dr. Margaret Aranda is a Stanford and Keck USC alumni in anesthesiology and critical care. She has dysautonomia and postural orthostatic tachycardia syndrome (POTS) after a tragic car accident left her with traumatic brain injuries that changed her path in life to patient advocacy.

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.

Noah the Narwhal: A Children’s Book About Migraines

By Jennifer Kilgore, Columnist

It’s not often that children’s books and chronic pain cross paths, but that is exactly what has happened in Noah the Narwhal, a new book from author Judith Klausner and illustrator Sarah Gould.

I was introduced to Judith by my old law school roommate, who was teaching a course at Boston University on anthropology and disability. She knew the author, who suffers from chronic migraines.

“Does anyone have any media contacts in the chronic pain circuit?” Judith asked. Well, my roommate certainly knew someone. Me!

Judith is a 31-year-old artist who lives in Somerville, Massachusetts, and this is her first book -- ever. You’d never know that by looking at it. The book is well written, slick, colorful and filled with friendly underwater characters who are brought to life in surprisingly little time. 

The story follows Noah, a narwhal whale who suffers from migraines (and who also wears a cute little sweater). I asked Judith why she chose narwhals.

“A couple reasons. One is that I kind of like the idea of a creature that unfortunately some people don’t realize is real,” she told me. (Embarrassing truth: I didn’t know narwhals were real until last year. My husband won’t let me forget this.) 

“Also, some people don’t think migraines are real,” Judith explained. “‘Eh, you have a headache. Get over it.’ I liked that analogy. Then, there’s the visual idea of the pain of a migraine. Noah wakes up with the feeling of a horn growing into his head. So that seems convenient! You just have to turn the horn inside out!”  She laughed.

“That, and narwhals are cool. They’re the unicorns of the sea.”

The story is fairly simple: Noah lives a great life and has wonderful friends, but he also has to deal with terrible migraines that drill into his head at unexpected moments. He tries to keep up with his family commitments, his job, and his social obligations, but his pain flares keep setting him back. At first, his loved ones don’t believe the pain can be all that bad, and they say, “But you were fine yesterday!”

“Today is not yesterday,” Noah keeps telling them. (I want to get that tattooed on my wrist.)

He also has adorable metaphors like, “My head feels like it’s full of sea urchins.”

Noah frets over leaving his friends and family in the lurch, but then they remember all the times that he was there when they needed him, and all the good that Noah has brought into their lives. They realize it doesn’t matter if Noah has to deal with migraines -- they love him, no matter what.

I cried when I read it.

Noah’s story parallels the points in Judith’s life that come out so strongly in the book. “It’s definitely pretty autobiographical,” she said. “I’ve had them (migraines) pretty much my whole life.”

In elementary school, Judith’s parents noticed a pattern and had the foresight to take her to a doctor when the migraines became more frequent and were accompanied by nausea. Eventually they were popping up multiple times a week, and auras started in high school.

The migraines kept a very strict pattern, arriving promptly in the evening at 5 o’clock. They never showed up more than three days in a row, so the fourth day was always clear. Then, in college, everything went off the rails. With no daily schedule, her migraines had no schedule, either -- they decided to strike whenever they wanted, lasting days in a row. Her doctors tried her on preventatives, which caused a host of side effects.

When asked how she dealt with college (she was a studio art major at Wesleyan College), Judith replied, “Not well.” She would let one class suffer each semester, in the hopes of just getting through with her degree.

After graduating, she fell into a depression and her friendships withered, because chronic migraines (having one a day for almost three years) interfered with any work or social schedule.

“With something like a chronic pain condition, you can’t schedule around it,” Judith said. “I was finding myself not able to do these things that everyone around me was doing. I thought I wasn’t strong enough, or smart enough, or I was too lazy, that there was something wrong with me, that I was the problem. And I had a lot of self-hatred around that time.”

Then she saw a migraine specialist who told her, “You know, you’re doing really well with what you have.”

“That was a really important thing for me to hear, at a really important time for me to hear it. Someone gave me permission to stop beating myself up so much,” Judith recalled.

It was out of these experiences that Noah was created. Judith always loved sculpting, writing and picture books. As she told me, “Picture books are not just for kids, and children’s books are a medium that have the opportunity to reach people at a formative age.”

Working from her couch, Judith put long hours into Noah the Narwhal, odds and ends that equaled a full-time job, though only when her body allowed. As those of us with chronic pain know, sometimes the demands of a full-time 9-5 job are impossible, a claim to which Judith can attest. 

For the artwork, she turned to her longtime friend, Sarah Gould. Their relationship goes back more than a decade. She works as a computer programmer on the west coast and earned a master’s degree in landscape architecture, but always wanted to work as an illustrator. The two of them thought that some sort of collaboration would be a fun long-distance project.

Sarah’s soft, precious, approachable artwork is the perfect complement to Judith’s words. Even when she was writing, Judith said she was imagining Sarah’s illustrations. 

Noah the Narwhal works because it is a simple story distilled into even simpler parts. Pain isn’t complicated. Doctors, medications, lab visits, insurance bills and prognoses -- those are complicated. At its core, though, pain is a feeling, a reaction, a response to stimuli. It’s a horn drilling into your head.

Judith understood this perfectly when writing the story. That’s why it works. As she said, “The more we can do to help people realize they aren’t alone, by understanding (chronic pain), the better.”

And it would do us all well to remember, today isn’t yesterday.

Noah the Narwhal is featured on PNN"s Suggested Reading list.

Jennifer Kain Kilgore is an attorney editor for both Enjuris.com and the Association of International Law Firm Networks. She has chronic back and neck pain after two car accidents.

You can read more about Jennifer on her blog, Wear, Tear, & Care.  

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 Is a Vital Sign

By Roger Chriss, Columnist

Pain is a vital sign because it is vitally important. In fact, pain is what brings most people to a doctor, whether it’s their primary care physician or an emergency room doctor. And identifying the cause of the pain and figuring out how to address it is fundamental to medical care.

But pain cannot be objectively measured. And so some people trivialize or criticize its relevance.

“Unlike heart rate or blood pressure, there is no objective way to measure (pain). Doctors and nurses must depend on patients to report the intensity level of their pain, which provides an opening for addicts to abuse the system,” Hadley Manning recently wrote in an op/ed in The Oklahoman.  "Pain shouldn't be considered a vital sign."

The American Medical Association (AMA) also takes a dim view of pain, passing a resolution last year recommending that pain be removed as the “fifth vital sign” in professional medical standards.

"Just as we now know (the) earth is not flat, we know that pain is not a vital sign. Let's remove that from the lexicon," James Milam, MD, an AMA delegate told MedPage Today.

While it is true that there is no way to objectively measure pain, this is hardly unique to pain. After all, many health conditions that doctors deal with cannot be objectively measured:

• In gastroenterology: appetite, nausea, or fullness
• In neurology: numbness or tingling, muscle spasms, or loss of balance
• In ophthalmology: double vision, light sensitivity, or blind spots
• In otolaryngology: tinnitus, dizziness, or difficulty swallowing
• In psychiatry: anxiety, depression, mania, or psychosis

This is part of why medicine is both an art and a science. Clinicians have to work directly with people and not just numbers and algorithms. Various instruments exist to formalize this process, including disability indexes for the neck and lower back, and a method for measuring adult depression.

Pain is included in many such instruments. And there are instruments that attempt to quantify pain. For instance, the Mankoski Pain Scale tries to characterize pain in a clinically useful way. The 0 to 10 scale goes from “Pain free” to “Can’t be ignored for more than 30 minutes” to “Pain makes you pass out.”

A number of medical conditions involve pain severe enough to be incapacitating or even crippling. Prevention Magazine put together a list of “The 10 Most Painful Conditions,” which includes kidney stones, postherpetic neuralgia, and cluster headaches.

To be clear, the abdominal pain of kidney stones is not just a “tummy ache,” but more like having your kidney sucked out through your navel. The pain of neuralgia is not just “numb toes and other woes,” but the agonizing burning that makes even a light touch a terrifying prospect. And a cluster headache is not a big “ice cream headache,” but an utterly incapacitating attack. You lay on the floor in a fetal position without even the mental resources to wonder if anyone will help.

Of course, pain can also be psychiatric in origin. The book Is It All In Your Head? True Stories of Imaginary Illness by neurologist Suzanne O’Sullivan, MD, describes how medically unexplained symptoms can be psychosomatic in nature but are nonetheless clinically real, and how a skilled specialist can make the distinction between organic and psychiatric causes of pain.

Thus, pain is a vital sign that cannot be ignored. It is the primary way that the human body communicates its needs and troubles. And it is the means by which people describe their medical problems.

Claims that patient complaints about pain create an “opening for addicts to abuse the system” ignore how healthcare works. Physicians don’t just look at a patient’s “pain score” and then write a prescription. They assess and evaluate the patient, and come to a diagnosis based on a combination of their clinical skills, lab work and testing.

And physicians sometimes err on the side of caution about patients’ descriptions of pain. The National Institutes of Health found that pain is often underestimated in women and racial minorities and often undertreated in socioeconomically disadvantaged groups.

While some patients may exploit the desire of a physician to help, it is also true that some physicians may ignore a patient’s legitimate need for help. Facile critiques that oversimplify the complexities of modern pain management diminish both the hard work of healthcare professionals and the suffering of people dealing with painful medical disorders.

Although pain is personal, subjective and not readily measured, it is very real. To diminish its importance because of an impractical standard of objectivity is to miss the fact that medicine is about relieving suffering.

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.

4 F’s That Can Help Lower Pain Levels

By Barby Ingle, Columnist

So far in my monthly series on alternative pain treatments, we’ve looked at 4 A’s (acupressure, acupuncture, aromatherapy, art therapy), 4 C’s (Calmare, Chinese medicine, chiropractic, craniosacral therapy) and 4 E’s (energy therapy, electromagnetic therapy, equine therapy, exercise).

I like my alphabet series because it offers pain sufferers a look outside the tool box for therapies they may not have considered. I know that insurance does not cover many of these treatments. And I know that nothing I am suggesting is going to cure anyone, but it may offer some pain relief. I suppose that’s the cheerleader in me -- keep going even if your team is losing and find a way to win.

Looking through the reader comments to my series, I found one from “Fred” that I liked:

"You read many commenters who say, 'I've tried them all, nothing works.' Wrong! There are hundreds, possibly thousands of potential alternative/complimentary pain modalities. Anyone claiming, 'I've done 'em all,' that person would have to be like 150 years old, given the time and dedication many require to show real effectiveness! NO ONE has done 'em all. There's always something left to try."

I want to thank Fred for his comment and to let him know that I agree with him. Far too often we say that we have tried everything and nothing works. But that doesn’t mean we should stop looking or trying.

The four F’s we’ll look at this month are faith healing, Feldenkrais Method, food, and functional medicine. Please contact a trained provider who can clear you before you try any of these suggestions, especially when it comes to movement and nourishment.  

Faith Healing

Faith healing is the practice of prayer or rituals that solicit divine intervention in spiritual and physical healing. This practice can include the “laying on of hands” and miracles.

I personally don’t know anyone who had a full recovery from divine intervention, but I did have a near death experience that taught me some important lessons.

I learned that I needed to have more patience with people and that human connection has a purpose. It helped me see my purpose in life and why I was here on earth. It didn’t take away my physical pain, but it helped me learn how to stay positive through it.

Many others have claimed miraculous recoveries through prayer. According to a Newsweek poll, 72 percent of Americans believe that praying to God can cure someone. I do believe it can happen, I just haven’t seen it yet.

In a report on faith healing, the American Cancer Society tells us that "available scientific evidence does not support claims that faith healing can actually cure physical ailments" and warns that "death, disability, and other unwanted outcomes have occurred when faith healing was elected instead of medical care for serious injuries or illnesses."

When parents have used faith healing instead of medical care, some children have died that otherwise would have been expected to live. Similar outcomes are found in adults who rely solely on faith healing.

I continue to say my daily prayers and remain a believer that all things are possible, even if I haven’t seen it yet personally. But I will continue with my other treatment options.  

Feldenkrais Method

The Feldenkrais Method is a type of exercise therapy devised and named after Moshé Feldenkrais. The method is claimed to reorganize connections between the brain and body, and to improve body movement and the psychological state.

I am a big believer in these techniques, used by Dr. Victor Pedro, who treats multiple friends of mine. I have seen them go into remission and remain well for years, although this treatment is not cost-effective for many.  

Supporters of the Feldenkrais Method claim it can repair impaired connections between the motor cortex and the body, which benefits body movement and improves their sense of well being. They also believe that it can be helpful with many pain conditions such as autism and multiple sclerosis. 

The Feldenkrais Guild of North America claims that this treatment option allows people to rediscover their innate capacity for graceful, efficient movement and that these improvements will often enhance function in other aspects of life. The treatment consists of repetitive movements with proper body alignment, done with or without a provider.

You can watch many videos online to learn and practice the Feldenkrais Method of exercise. Here is a sample:

Food

The food that we put in our bodies is one of the underlying causes of inflammation, which increases chronic pain. This is also one area that we have complete control over and don’t need insurance to cover.

I myself have used a low-carb, high fat diet – known as the ketogenic or paleo diet -- to help lower inflammation and lose weight. I thought the diet was going to be much more expensive, but it turned out costing about the same as what I was spending on my regular food budget.

I also discovered I was not as hungry or constantly looking for snack foods as I was when I was eating my regular “American” diet. We underestimate how inflammation plays a major role in chronic pain. Knowing what foods can increase inflammation can make a big difference in how we manage pain.

One of the things I have done with my diet is add some “super foods.” Several research studies have shown that the compounds in these natural foods can reduce inflammation and even block pain signals. Research also shows that super foods can increase brain chemicals, such as serotonin, which can stop depression and make you feel happier.

The super foods that you could add to your diet to deal with chronic pain naturally include burdock root, hot peppers, yogurt, fresh ginger root, cannabis, turmeric, fenugreek leaves, onions, strawberries, garlic, olive oil, and salmon.

For more information on the ketogenic diet, I suggest reading Quick & Easy Ketogenic Cooking by Maria Emmerich.

Functional Medicine

I believe functional medicine (FM) is the future of conventional medicine. In FM, the provider works to address the root cause of disease and views the body as one system, not a collection of independent organs to be treated separately. This type of care lets us focus on treating the whole body, not just the symptoms.

I have had providers who were specialists who only looked at one body part or organ and were not willing to consider that it was all interlinked. Finding providers who believe in FM was very important to me. Having this patient centered approach to my care helped me be my own best advocate and helped my providers do a better job getting me into a state of remission and controlled pain levels.

My providers spend time with me, between 45 to 90 minutes per visit. We go over my medical history, genetic vs. environmental aspects, and lifestyle factors. I love functional medicine because it helps support individualized treatment.

With the sharp increase in people who have one or more chronic illnesses such as diabetes, heart disease, mental illness, autoimmune disorders and  cancer, we need a system of care that puts the spotlight on everyone as a whole person.

The old way of practicing medicine is going out the window. We need to demand that all providers are on board with FM practices. We no longer want to be cookie cutter patients. We each need a unique approach to our care, and it is possible with better training for providers, research, and patient engagement.

Most providers are not adequately trained to assess the underlying causes of chronic diseases. Most can’t even adequately provide strategies such as nutrition, diet and exercise to treat and prevent future illnesses in their patients.

As patients we must push for FM and a more holistic approach. Finding a provider who is trained in FM involves them understanding disease origins, prevention, and treatment of chronic illnesses. With FM the unique genetic and environment of each patient is considered and an integrative, science-based care approach is employed using both traditional and alternative treatment options. As we focus on both internal (mind, body, and spirit) and external (physical and social environment) we will see greater improvements with our health, life and overall ability to function.

Do you have any suggestions? What alternative pain therapies have you tried that succeeded?  The more we share, the more others can see what they are able to do, what new treatments are available, and what old ones they may have overlooked.

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.

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.