When Life Doesn't Turn Out Like We Planned

By Barby Ingle, Columnist

Most of my conscious thoughts start when I was 4 years old. I knew then who I was going to be when I was an adult, or at least thought I did.

My parents thought I would change my mind. My dad even told me, “No, you can’t be a cheerleader the rest of your life.”

They were sure I would have children that would pester me, like I did them. They were sure that we all grow up and become the adult that society makes us into. I am over-simplifying life, but that is what we do to stay happy, positive and lighthearted.

I knew I was made to motivate and inspire others for as long as I can remember. I knew I would be a cheerleader for life, that I wouldn’t have children of my own, and that I would be organized and hardworking. Those beliefs I held as a child, I still hold today, for the most part. I knew all of this at age 4 and all of it came true and more.

The “more” is the life I live in the present, at age 44. The road of life that brings changes, roadblocks, boulders, mountains, and stoplights is constantly changing and unpredictable. I didn’t know what tomorrow will bring.

One day, all the roadblocks hit at once. I was 29 and never imagined anything like the life I have now. It was devastating for a while. I eventually realized that this is just life. I have the power and choice to make mine happy and productive. Things are going to happen that are great, devastating, happy, sad, and every level in between.

It shouldn’t take 3 years and 43 providers to get a proper diagnosis. But it did. Everyone should be able to live the life that they want. But most of us can’t. According to one survey, only 1 in 11 people are working in their childhood dream job.

So, what do we make of life when chronic illness strikes? Is life over?  I think not. I found a way to change my new realities so that -- even in pain -- I was living my dreams.

I think it would be even easier if you are among the 10 of 11 people who didn’t realize your destiny. Maybe you have been doing it all along. No matter if you know your destiny or are making it up as you choose, in each moment the core of you is the same.

Let’s face the challenges of living with chronic pain with more positivity, optimism and motivation. When the world gives us lemonade, we make margaritas. When it takes away the chocolate, we find new ways to make dessert.

I know my message may be hard to hear if you are a pain patient. So I will share a few tips on how I keep myself moving, keep being ME, and hopefully inspire you to look at life in a new way, when it’s not turning out as planned.

First, I realized that I can’t control all the things that happen to me, but I can decide how I will react to what happens. I can plan and counter-plan, and then make the best of the new reality.

We all have our stories. That is what we are creating here on earth. Stories should be shared. Sharing them can be a decisive action. Some are mere ripples and others can be tsunamis, meant to teach us and those with whom we share a new life lesson.

No one story is sadder or happier than anyone else’s. Life and how we react to it is what matters. You can choose your path, make a new one, or follow others. It really is up to you.

Developing a chronic illness changes how we see life. Pain changes everything about life. When a roadblock comes your way, take a step back, look around to explore the whole picture, and decide how you’d like to respond.

We must learn to be brave facing our new reality. When something does shake us to our core, we must take the time to face it, understand the emotions of the situation, and realize that tomorrow can be a better day. Being honest with myself, especially when things don’t go my way, reminds me to hold on for one more day. Things will change, even in the darkest of moments. Hold on and you can make it through.

Take the time to understand yourself, learn your new boundaries, test those boundaries, and know that it’s not your fault. Life just is what it is. What can you do to make it better for yourself?

It is important to be open to new treatment options, new health discoveries, and new life experiences (or old ones being done in a new way). Hanging on to what could have been would make me bitter and resentful.

Finally, remind yourself constantly that pain won’t get you down forever. It takes work to create the life that you want, and you may fail at times. It doesn’t mean that you are worth less, that you are not going to be successful, or that you can’t change the outcome to something more positive.

How you choose to respond is what matters and that is what life’s all about.

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.

9 Lessons From 9 Years of Living with Chronic Pain

By Lana Barhum, Columnist

In September 2008, I was 32 years old, married, with a newborn and a nine year old, when I learned I had fibromyalgia and rheumatoid arthritis. Chronic pain and illness suddenly dominated my world.

That was almost nine years ago and I have learned a lot from this often unfair experience. It seems chronic pain and illness have much to teach us. Here are 9 lessons I’ve learned:

1) I am Stronger than I Ever Imagined

There was a time when I didn’t think I could ever meet the challenges imposed by pain and illness. But you don’t know how strong you are until your world comes crashing down and you are left to deal with the aftermath.

The human spirit and body have a high tolerance for pain.  Just when you think you cannot possibly live with it, you find you can.  I have had some pretty painful experiences – some so bad I wished for death.

But I am still here – alive and well. Because no matter what, I am stronger than this. And guess what? So are you.

2) Acceptance is Vital

I spent the first few years of being sick and in pain living in denial.  That choice took its toll on my physical and emotional health.  It was not until I truly accepted my health challenges that I was able to move past them and focus on having a somewhat normal life.

Acceptance also means you are an active participant in your health.  Take your medications and your doctor's advice, keep moving, and focus on bettering your mental and physical health.

I still have days where acceptance is a struggle, but I choose to remind myself what I am feeling isn't permanent.  

3) Don't Take Life So Seriously

As it turns out, there is more to life than being healthy.  You can still have a good, happy life even though you hurt and feel awful. 

There will be good days, bad ones, and even downright ugly ones. But you can still experience moments of happiness, enjoy life, and have meaningful relationships.  Illness and pain don’t define you or dictate your life.

Even at my sickest, I managed fill my life and my children's lives with joy and laughter.  Focusing on the good stuff, not taking life so seriously, and letting go of what you cannot control keeps you from shedding unnecessary tears.

4) Give Grief a Limit

The grief we often feel from chronic illness comes and goes. Like many of you, I have endured plenty of grief-filled moments.  I have been angry, sad, and even clinically depressed.

Grief is normal and natural, especially when your life is continually dominated by pain, sickness, and losses.  Give yourself permission to be angry about your pain, but don’t let those emotions take on a life of their own.

5) Life Can Be Unfair – Let Go

I know all too well that chronic illness and pain are unfair. If I could I have protected my health, I would have, but I couldn't.  And I couldn’t control the snowball effect that continued for several years after my diagnosis. All of it just simply goes back to life being unfair. It has nothing to do with health challenges.

I am learning to let go of what I wanted my life to be and to just focus on what it is now.  Things just happen – like a permanent injury or a chronic disease – that don’t have an explanation.   You can either focus your energy on dwelling on the unfairness or you can move on, let go and learn.

6) People Sometimes Let Us Down

I used to think chronic pain and illness were the worst things that happened to me, but it turns out they weren't.  Finding out that people don’t stick around when the going gets tough is far worse.

Some of my friends walked away.  My family didn’t understand.  And my marriage ended.  Before I got sick, I loved sharing my life with others.  But now that I am not sick and in pain daily, I don’t. People don’t always get that.  That makes maintaining relationships harder.

These days, I place my focus on creating a positive family life for my children and giving us the best life possible.  I don’t have a lot of time and energy to worry about others who don’t understand.   After all, this is MY life – pain, sickness and all - and I get to decide who is in it and who isn't.

7) This is Your Journey – No One Else's

After nine years, I am finally confident in my ability to manage this roller coaster ride alone.  Yes, I can sometimes rely on others to help and provide support, but at the end of the day, I decide the kind of person this life with pain and illness makes of me.

You may have all the support in the world, but you are the only one who can decide the direction this journey goes. Chronic pain can take so much if you let it.

Choose to make the best experience of this journey even when it hurts, and even it feels like you have got nothing left in you. Trust me when I say, “You have got this.”

8) Let Go of Your Fears

I was once afraid of what my life would become, but here I am nine years later and my fears were nothing but wasted time.  Interestingly, my health challenges took my life in directions I never anticipated and most of them have been good.

Don't miss out on the blessings of the present and future because you are dwelling on the past.  Stop being afraid because you can still have a bright future.

9) Never Give Up on Your Health and Happiness

My life changed the day my doctor said, "You have rheumatoid arthritis and fibromyalgia."  I went from being a healthy young mother to someone with an uncertain future.  I don’t take anything in my life for granted anymore and I treasure each day as the gift it truly is.

And the things that I thought I had to give up on – my dreams, watching my children succeed and grow into amazing human beings, and even finding love again – I was so wrong about.  All these things were possible despite chronic pain and illness. And they continue to be.

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.

Waiting for Effective Pain Care at the VA

By Steve Pitkin, Guest Columnist

As a veteran of Vietnam and as a chronic pain sufferer, I am so glad that Pain News Network has been a consistent voice for 100 million Americans who are basically being told to "go off and die somewhere" by the DEA, CDC and other government agencies who are supposed to be protecting us.

I started on morphine, clonazepam and temazepam in 2001, and was constantly monitored by a team of psychiatrists, psychologists and my primary care physician at the VA Medical Center in West Palm Beach, Florida. I did not get "high" from the treatment, but it gave me a quality of life that I could not have with other medications.

I was in a car wreck after I retired from the military in 1997. In September of that year, I was taking my youngest daughter to an orthodontist appointment when our vehicle was hit by a truck right after a rain storm.

The crash seriously injured my daughter, who was clinically dead for over 6 minutes before being brought back to life by a helicopter rescue team. She still suffers from a traumatic brain injury, as well as pain issues herself.

The accident worsened the already extensive injuries to my cervical spine and lower back area. I started to lose strength in both arms, and a civilian doctor attempted an ulnar nerve release. That worked for about a week, before the pain and numbness came back.

STEVE PITKIN

I eventually moved to Montana and was treated by a new primary care physician at the VA clinic in Missoula. He and his nursing team were not very helpful, so I asked to be transferred to a new doctor last year.

I was called back to the clinic and was introduced to my new physician. He took one look at my medical records and said, “The amount of painkillers you are on is borderline medical malpractice and we're going to have to get you off of them as soon as possible."

I nearly hit the roof when he said that. I had three failed right knee procedures, my cervical and spinal pain had grown worse, and here he's telling me that I was a victim of too many painkillers?

I have been pretty much bedridden since my dosage of morphine and the other medications were reduced. I have also been told I need to have both knees and both shoulders replaced. However, I was refused surgery on my neck by a neurologist who said, “If I were to operate on you, the amount of painkillers you’d need would kill you. You need to get off the morphine and benzodiazepines first, then come see me."

I told the neurosurgeon that I was an ex-Green Beret medic and had already gone through surgery several times with no serious side effects. But I was talking to a blank wall.

I went to see another primary care physician about the problems I was having with the lower dosage. He laughed at me when I asked if he could raise the dose. “You signed this paper saying you agreed to it," he said while waving the paper at me.

I didn't have any choice in the matter. I was told either to sign it or be cut off altogether.

I have written to both the House and the Senate Veterans Affairs Committees and was told there was nothing they could do to help me. When I found out that Montana Sen. John Tester was on the Senate Committee that helped the VA pass these measures, I was livid and told him so.

I even emailed President Obama and received a reply from him, saying something to the effect that it was important to keep heroin off the streets and to stop illegal sales of prescription pain meds.

There’s no doubt about that, but we who need those medications are being lumped into the same pile with drug abusers. The veteran suicide rate is estimated 20 a day and many vets, as well as civilian chronic pain patients, have been forced into buying illegal drugs and are dying from them.

I have always been a patriotic American and didn't hesitate to volunteer for the draft when I was 18. But if I knew that the government I served for so long would declare me an enemy, I think I never would have gone into the military. If not for my strong faith as a Christian, I would have killed myself long before writing this.

I can only hope that President Trump realizes that waiting in line for healthcare is not the only problem with the VA, and that wars injure and maim people for life.

Was it all really for nothing?

Steven Pitkin lives in Montana.

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.

Are We Near an Opioid Tipping Point?

By Roger Chriss, Columnist

We are fast approaching a tipping point in the opioid medication crisis.

Consider all that is happening:

The Centers for Medicare and Medicaid Research (CMS) wants to adopt the CDC guidelines as mandatory rules for prescribing opioids to Medicare recipients. CMS has proposed a daily ceiling on opioid medication as low as 90 milligrams morphine equivalent dose (MED) for millions of people.

The National Committee for Quality Assurance (NCQA) has proposed a daily limit on opioids of 120 MED for no more than 90 consecutive days.

The Pentagon and the Department of Veterans Affairs are also seeking greater restrictions on opioids, including a recommendation not to prescribe them for chronic pain to anyone under the age of 30.

States are clamping down on the dose and duration of opioid prescriptions. Maine has passed legislation severely restricting opioid prescribing, joining states like New Jersey, Virginia and Washington in tightly regulating opioids. Although there are exceptions for cancer pain and end-of-life care, people with chronic or intractable pain are being forced to taper their dose or replace opioids with less effective options.

Taxes on opioids are under consideration in New York and in California, which is also looking at prohibiting people under 21 from receiving oxycodone.

Rhetoric is reaching propaganda-like levels of hyperbole in the so-called war on opioids. The Hill recently ran a blog post with the headline “Chemical weapons of mass destruction on US soil.” It opens with the statement that “America is under attack. Chemical weapons of mass destruction are now in every city nationwide in the form of opioid drugs.”

The Huffington Post Canada has a similarly alarmist post claiming that “fully one-third of Americans who are given prescription opioids become addicted within two months.” It also claims that "pharmaceutical companies in Brazil and China are bucking the trend by running training seminars urging doctors to prescribe more painkillers rather than less.”

In an interview in MedPageToday, Dr. Daniel Clauw states that "I haven't prescribed an opioid for chronic pain in at least a decade," without ever clarifying what the outcomes were for his patients.

Predictions about the crisis are more dire. A recent article in MarketWatch headlined “America’s battle with drugs: Fatal overdoses spike among white, middle-aged men” said researchers at Columbia University have predicted that fatal drug overdoses “will peak at 50,000 annual deaths in 2017 before declining to ‘a non-epidemic state’ of 6,000 deaths in 2035.”

We are on the verge of an opioid tipping point, approaching the kind of prohibition the U.S. tried with alcohol almost 100 years ago. But rather than a Constitutional amendment, state governments and federal regulatory agencies are coming together like a swarm of angry bees to attack opioid substance abuse by clamping down on people who receive opioid therapy.

This is like trying to stop car thieves from driving recklessly by imposing new rules and regulations on safe drivers in their own cars.

The consequences of these restrictions are easy to see. People forced into rapid tapering to get their opioid dose into compliance with CDC guidelines are enduring dangerous side effects. People abruptly cut off from their pain medication are so overwhelmed by the pain of debilitating medical conditions that they contemplate or even commit suicide.

A column in STAT News recently discussed the “inhumane treatment” of pain patients, which Dr. Lynn Webster anticipated in his 2014 article, “Pain and Suicide: The Other Side of the Opioid Story.”

So why the race to restrict opioid medication? Is it so policymakers and legislators can say they did something? Are they playing defense and trying to pre-empt addiction? Does the rhetoric insulate them from facing the consequences for people with chronic or intractable pain?

Maybe the goal is to prevent addiction no matter the cost. But the cost is being born by the many people currently being successfully treated with opioid therapy.

This tipping point is a misguided step in a pointless direction. Even if it does help prevent a single case of substance abuse, it requires sacrificing the quality of life of thousands of people enduring the pain of chronic illness.

Worse, tipping points can happen very fast. But recovering from a tipping point and restoring balance in a system takes time. Which leads to a final question: How long will chronic and intractable pain patients have to suffer before policymakers and politicians see the harm restrictive opioid prescribing is causing?

Roger Chriss suffers from Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is from Washington state, where he works as a technical consultant who specializes in mathematics and research.

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.

3 Things You Need to Know About Opioid Pain Meds

By Janice Reynolds, RN, Guest Columnist

A recent guest column on PNN suggested that we need to admit opioid medications are dangerous.  Yes, they can be dangerous, but the bigger question is why are they singled out for “special” treatment? 

All medications have the potential to be dangerous, yet opioids are the only class of medication being treated as if they are the gateway to Armageddon.  Due to “fake news” and “alternative facts,” many see opioids as bad for acute pain, as well as persistent pain.

This hysteria has even affected the use of opioids to treat non-pain medical conditions -- one being as a first line therapy for potential heart attack or heart failure. Opioids cause blood vessels to dilate and lower blood pressure; getting more oxygen to the heart, decreasing anxiety, and reducing the risk of a heart attack. 

Chemotherapy drugs and bio-therapies are all very dangerous medications, causing a variety of injurious side effects, as well as secondary cancers in some cases.  Generally, when given in a hospital setting, precautions are needed to prevent others from being exposed to them. Typically, these are used for cancer, but they also have non-cancer uses and for some pain syndromes; such as methotrexate for rheumatoid arthritis. 

After a cancer is cured or in remission, many patients are left with pain disorders caused by the cancer or medication.  Because they no longer are seeing an oncologist, many recovering cancer patients are not able to get their “chronic pain” treated, especially with opioids.

Non-steroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen have long been known to be dangerous. They are black boxed by the FDA for cardiac events and gastrointestinal bleeding. Nephrologists will tell you they are the leading cause of chronic kidney failure. They can also potentiate heart failure. 

These side effects are not from overdosing, but can occur even when taken as prescribed.  Most side effects are not even included on the label of over-the-counter ibuprofen. It has been estimated 20,000 people a year die from ibuprofen. 

As a colleague said to me years ago, “If I prescribe an NSAID and the person dies, nothing will happen to me.  If I prescribe an opioid and they die I will be investigated.”

Safety is a huge issue with any medication, especially in older adults. As we age, our metabolic and elimination systems become less effective, and there is an increase in comorbid conditions that frequently results in more medications. 

The Beers Criteria has been around since 1991, with the last revision in 2012.  It lists medications which should not be used or rarely used by older adults.  These are medications that are inappropriate, potentially dangerous, and can worsen serious health conditions.  The list is evidenced based. NSAIDs are on it (and have been for a long time) while opioids, except for Demerol and Darvon (no longer on the market), are not. A few other medications used for pain, such tricyclic antidepressants (TCAs) are on the list as well. 

Taken in excess, acetaminophen (Tylenol) can damage the liver, heart medications can permanently damage the heart, and blood pressure medication or any drug which causes sedation can lead to death.  

Drug Interactions

Overdose deaths involving opioids are nearly always in someone who is opioid naïve or taken in combination with other medications or alcohol. Interactions between alcohol and other medications can frequently cause problems and may even be fatal.  

If alcohol and opioids are taken together and a problem develops, why is the opioid held at fault? Medications which cause sedation are the likeliest culprits to cause a fatal interaction with opioids. Alcohol interacts with nearly all medications, some worse than others. 

Other medication interactions can increase how a drug works or decrease its effectiveness.  NSAIDs and many other non-opioid pain medications have a higher risk profile for interacting with other drugs. TCA and anti-arrhythmics have a fatal interaction potential, for example.  Pregablin (Lyrica) has 26 potential major interactions.  NSAIDs interact with several medications, including antidepressants (SSRIs) and anticoagulants.

Opioids do not by themselves cause addiction. However, some people have the potential to become addicted to them, especially if they have an addictive personality.  Many other medications can also lead to addiction, such as benzodiazepines, barbiturates, amphetamines (e.g. Adderall), and caffeine.  Alcohol and nicotine are the leading potentially addictive drugs.

Physical dependence should never be confused with addiction, as they are two separate issues.  This misunderstanding about opioids and addiction has been long standing.  Many of us who have cared for dying patients have had a family member worry about their loved one becoming addicted, even when days away from death.

Opioids have a long history of relieving pain and it is untrue there is a lack of evidence concerning their use.  One of the difficult things with any medication, including opioids, is the fact that not everyone responds to them the same way or at the same dose.  For example, while some will respond to opioids for fibromyalgia or migraines, most do not.

The most insulting, cruel, demeaning and wrong thing someone can say to a person in pain is “You only think it works for you.”

There is no pain syndrome called “chronic pain.” And separating non-cancer pain from cancer-related pain is irresponsible and morally wrong. 

From the Journal of Pain Research:

"These claims are primarily philosophical, rather than medical or physiologic. As mentioned, pain mechanisms do not discriminate between cancer and noncancer pathophysiology. Patients with cancer or those without cancer have essentially identical pain-generating physiologies, and thus the same mechanisms for the development of their pain (eg, inflammatory pain in a cancer patient will be the same physiological process as in a noncancer patient). Further, cancer patients are living longer and their original pain generators become chronic pain in and of themselves, little different from patients without cancer."

So why should we have this discussion? Three reasons:

1. It is said we should accept erroneous beliefs and statements because this is what “everyone” believes based on opioid phobia, and to not do so would make us appear stupid. But who is being stupid here?
2. To emphasize the fact that no other medication is being restricted and villainized the way opioids are. This is based on opioid phobia, and the prejudice and bigotry shown towards people in pain.  Benefits and risks are a discussion between the patient and a knowledgeable provider, and should not be the purview of regulators, the media, politicians or opioid-phobics. 
3. Everyone needs to be knowledgeable about the dangers associated with medications. Few providers do a good job catching potentially dangerous interactions.

The worst case scenario is that people in pain are dying and some are being arrested after being denied effective treatment in emergency rooms.

I repeat: The benefits and risks of opioids need to be left to the patient and their doctor.

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 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.

Finding Meaning and Purpose While Living with Pain

By Pat Akerberg, Columnist

Have you ever wondered if your life still has meaning and purpose?

Who makes that call, you or someone else for you?  It’s an important question to consider. 

Until a recent column, I had never experienced someone else (especially in the pain community) questioning my value and purpose in life. Or challenge what I do to provide meaning to it.

The column was about freedoms I’ve lost and the alternative ones I’ve had to find since my entry into a life dominated by debilitating pain.  A reader judged my acceptance about how I’d redistribute my limited energy capacity as my being a “selfish wanker avoiding life.”

Initially, I dismissed the uninformed judgment as just that.  But since then, I’ve chosen to write about it because judging a person’s journey in life, especially someone with pain, is such an easy way out compared to working to understand the serious impact pain has on the thousands of us living with it. 

Of course, everyone is entitled to their opinion and we can agree to disagree.  However, making the choice to turn a person’s personal pain experience into a judgment designed to diminish that person is the difference between being harmful or helpful.

So even though it’s not new for pain patients to be prematurely misjudged or undeservedly labeled by those who don’t understand what they deal with, that doesn’t grant that behavior acceptability. 

From experience, I know the kind of confusion and identity questions that can happen around value and purpose when a medical issue forever changes your life, plans and dreams.   

Seven years ago, when I had brain surgery for intractable trigeminal neuralgia I became one of the rare 1% to experience the most damaging, painful and devastating irreversible complication. 

Being abruptly sidelined from my professional work and all that I thought was essential to who I was had me wrestling with the value of my altered life. When that niggling question about meaning and purpose eventually rears its head (and it surely does), most people afflicted by chronic pain tend to be hard on themselves when pain levels dictate what they can accomplish.

What I’m describing isn’t unique to me.  Hundreds of thousands of us have life changing stories to tell.  The kind of stories that typically evoke empathy and compassion, stories that catapult us into a rude awakening that nothing in life is permanent.   

During various stages of my earlier life, any questions about life’s meaning or purpose seemed to have plausible answers.  That’s probably because I was engaged in what I was supposed to be “doing” then in my socialized roles. Those earlier stages of life tend to be about identity building.  It’s a process centered on exploring, defining, and constructing ones’ direction and purpose in life.

The importance of finding direction in life is stressed early on as part of what gives our lives purpose.  In a variety of ways, our achievement-oriented culture telegraphs messages that "doing" is king, trumps "being" and determines our value, worth, and success.

It’s not always a balanced approach to the whole of our lives though.

Still, we make a concerted effort to prepare ourselves for autonomy by working hard to carve out our niches in the world. Like many of you, I pursued my goals and checked many of the boxes that spell success. But external success in business or any other endeavor doesn’t comprise the whole of our lives or all of who we are.

In mid-life when trigeminal neuralgia hit, I wasn’t ready to stop working or give up that identity.  Nor was I prepared for all the other losses that would continue to follow. Being prematurely thrust into taking stock of the meaning and purpose of life carries unusual significance.

Having to whittle down your life and reconstruct your identity is a blow. So are the losses that follow.  It can be demoralizing to admit that there’s much we can no longer “do” or handle in the same way.

Learning to befriend and value the “being” aspects of who we are takes time, encouragement, supportive people, and inner fortitude. You need to work through the internal inventory taking and conflicting dialogue that surrounds the shift in focus.

Internal hard work like that isn’t always visible or discernible to someone on the outside looking in. That’s why careless judgments or erroneous inferences often miss the mark.

Thankfully, I have been fortunate to experience the positive impact that encouragement, support, and understanding can bring at a time when it’s sorely needed. I’ve also watched hope rise, albeit a revised version, within others when they receive support from family, friends and like-minded, compassionate pain counterparts. 

That kind of unconditional human regard has solidified my belief that who we are as human beings, not just human doings, is the nucleus of what cultivates meaning and purpose in our lives. 

We become our best selves when we become aware of the kind of person we want to be and act accordingly.  Those thoughtful behavioral choices and values determine the quality of our relationships with our selves and others in our wider human circle. 

Otherwise, our unconscious choices and actions can carry unfortunate blind spots with many unintended consequences. 

What matters most to one person may matter little to another.  There’s no one-size-fits-all answer that can possibly address the personal interpretation each of us has about what’s meaningful or purposeful.  

Given that reality, whether your life holds meaning or purpose can only be your call to make.

The misplaced judgment that any one of us altered by pain is lazy or selfish is beautifully countered by poet David Whyte (in Sweet Darkness) when he writes, “Anyone or anything that does not bring you alive is too small for you.” 

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

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

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

How the CDC Opioid Guidelines Affected Me

By Sarah Irvine, Guest Columnist

I'm 42 years old and have been suffering from chronic pain for the past several years. I was injured at work almost 8 years ago and, like many others, I have been affected by the CDC opioid guidelines.

I have herniated and bulging discs in my lower back, scoliosis and I ambulate with a cane. I have Protein C deficiency, a blood clotting disorder, and I am not a surgical candidate.

I live with excruciating pain and my pain medication, morphine sulfate, has been decreased from 150 mg daily to 45 mg daily. I also was recently prescribed Lyrica and baclofen, a muscle relaxer.

This does nothing to alleviate my pain. I'm becoming shorter, my spine is shaped like a serpent and my muscles are becoming more atrophied. Workers compensation refuses to pay for any more physical therapy and Medicare won't cover it either.

I'm certainly not able to pay out of pocket and at this point I'm in too much pain to function. Due to the Protein C deficiency, I should not take NSAIDs or steroids because they increase my risk of bleeding. I am also on a high dose of Coumadin for my blood disorder.

SARAH IRVINE

Things have gotten so bad because of the guidelines that my doctors are now telling me to take NSAIDs and are prescribing steroids; whereas before I was warned to avoid those medications and doctors refused to prescribe them for me.

I have never abused, misused, shared or sold my medications! It truly seems as though the CDC and DEA want to decrease the population of those who suffer from chronic pain by refusing patients adequate medical treatment and appropriate pain management.

I also believe that they hope those of us who are suffering will take our own lives, rather than try to endure the horrific chronic pain.

I'm on disability and no longer able to work because of my injury and the pain I endure. My quality of life has deteriorated to nothing. Some days all I can do is lay in bed. I can't even enjoy reading a book or watching a TV program without my pain interfering.

I do not understand why I and thousands of others in the same situation are being forced to suffer unnecessarily! We aren't criminals, drug dealers or addicts! We are victims of our pain!

Every aspect of my life is affected by my pain on a daily basis. I know I'm not alone. I only want to enjoy whatever is left of my life.

There are medications that would allow me and others to do so. Why are they being withheld from us? If we were animals, we would be treated more humanely than this.

I just want to know what I can do, who I can call, email or write to in order to get these abusive, inhumane laws changed. Also, is it possible to file a class action lawsuit against the DEA, CDC or both? Is there a class action lawsuit in place right now? If so, what can I do to get involved?

It's not about financial gain. This is about quality of life! What is happening right now is downright cruel, inhumane and criminal. I would be very appreciative if someone could lead me in the right direction so that I can do whatever is within my power, to get my life back and help others, before it's too late. I'm tired of being abused and victimized. I want my life back.

Sarah Irvine is from New York state.

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.

A Letter to Medicare From a Worried Pain Patient

Editor’s Note: This Friday marks the deadline for the public to comment on opioid prescribing guidelines proposed by the Centers for Medicare and Medicaid Services (CMS). As PNN has reported (see “Medicare Planning to Adopt CDC Opioid Guidelines”), the guidelines are likely to limit access to opioid pain medication for millions of Medicare beneficiaries. They would also empower insurance companies to take punitive action against pharmacies, doctors and patients that don’t follow the guidelines.

The following is a letter written in opposition to the CMS guidelines by Ms. Judith Botamer. She has graciously agreed to let us publish it here in the interest of getting more people to send their own comments to CMS. 

All comments should be emailed to CMS no later than March 3 to this address:

AdvanceNotice2018@cms.hhs.gov

To Whom It May Concern:

As a disabled chronic pain patient, I strongly oppose the Centers for Medicare and Medicaid Services’ plan to accept policies from the recent CDC Guideline for Prescribing Opioids for Chronic Pain. I implore you to take action so that this mandate does not become a reality for the 100 million Americans who suffer with chronic pain, including many on Medicare.

The CDC guideline is simply a voluntary guide intended for primary care physicians only. The CMS guideline as written gives no margin or credence to pain management doctors who already have strict opioid policies, as well as an established ongoing relationship with their patients.

Your currently drafted policy makes the guidelines mandatory for all doctors, patients and pharmacists, and imposes a ceiling on the highest dose of opioids that can be prescribed. This gives physicians no discretion in determining what is right for their patients. That was never the CDC’s intent, nor is it feasible to expect all chronic pain patients to be able to maintain the level of care that their doctor has established for them.

I am permanently disabled with neuropathy, RA, fibromyalgia, torn disks, TMJD and migraines, as well as many other pain conditions for which there is no cure. At the young age of 53, I sometimes feel my life is over. If not for pain control from opioid medication, it surely would become a reality.

I never asked to be overcome with this much pain from so many “invisible illnesses.”  As a prior athlete, I am challenged daily to accept the reduced quality of life for myself and, in turn, for my family. Fortunately, my empathetic pain doctor will prescribe me enough medication so that I am functioning. If my current regimen were to be lowered to the amount set forth in this guideline, I would not be able to fully care for myself, perhaps be bedridden, and be left with a dramatically diminished quality of life.

This mandate actually takes away my right to a quality of life that I deserve. The burden of being struck with legitimate pain conditions should not equate to the loss of a right to live life with dignity, just as any other patient with any other chronic illness.

Many doctors are now frightened of prescribing pain medication for fear the CDC, DEA or FDA would sanction their license, when they simply want to fulfill their oath of “do no harm.” And let's be clear, not prescribing pain medication to a patient who is suffering, is doing harm! Not only for the patient, but for our communities and society as a whole.

To this point, on June 1, 2016, Dr. Debra Houry, the director of the CDC’s National Center for Injury Prevention and Control, wrote the following:

“The Guideline is a set of voluntary recommendations intended to guide primary care providers as they work in consultation with their patients to address chronic pain. Specifically, the Guideline includes a recommendation to try taper or reduce dosage only when patient harm outweighs patient benefit of opioid therapy. The Guideline is not a rule, regulation, or law. It is not intended to deny access to opioid pain medication as an option for pain management. It is not intended to take away physician discretion and decision-making.”
  

I truly hope that there is no collusion between the insurance industry and CMS in drafting your new “Opioid Misuse Strategy.” Taking pain medication away from a pain patient will not stop the criminals, drug cartels or addicts. Those issues are worlds away. Pain patients are not addicts or looking for a “high.” They depend on their medication just as a diabetic depends on insulin for life quality.

Please join me and become an empathetic advocate for the millions who suffer in silence as a result of just a few who break the law and displace attention away from the real tragedy: Pain patients being denied medical treatment, being treated as criminals, and their doctors being threatened for only doing the right thing!

For all of these reasons and more, CMS should not adopt or align your agency’s policies with the CDC Guideline, as it is apparent you have misinterpreted them.

Sincerely,
Judith A. Botamer

Pain News Network invites other readers to share their stories with us.

Send them to: editor@PainNewsNetwork.org. 

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

The Magical Opioid Number

By Roger Chriss, Guest Columnist

Numbers can be impressive. They seem like powerful evidence or useful metrics in regulations and legislation.

In 2016, the Centers for Disease Control and Prevention issued its guidelines for opioid prescribing, setting a recommended daily limit on opioid doses at 90 morphine milligram equivalent (MME). Now the Centers for Medicare and Medicaid Services (CMS) is on the cusp of adopting that number as a requirement for Medicare recipients. Physicians around the country have already started using it and so has the Veterans Administration.

In addition, Maine has passed a state law with a maximum 100 MME allowed for opioid prescribing starting on July 1, 2017. New Jersey, Virginia and other states are also passing laws restricting opioid prescribing by dose or duration, often citing the CDC guidelines as justification. 

But this number is all but arbitrary. The CDC guidelines recognize that the 90 MME ceiling was based on limited evidence. Obviously, patients are not safe at either 80 MME or doomed at 100 MME.

Nor can this number be used to calculate the safe number of days or doses for an opioid prescription. It is a magical number. And magical numbers can lead to magical thinking.

In fact, the 90 MME from the CDC cannot even be reliably calculated. The CDC offers an app that allows physicians to calculate the 90 MME. Its basic methodology is described here. Web sites like Practical Pain Management also offer an opioid calculator, and third-party developers have created opioid conversion apps.

But it turns out that the results of these calculators are inconsistent. Dr. Jeffery Fudin and his students have shown that the various methods of calculating MME produce significantly different outcomes.

Thus, how much of a morphine equivalent dose an individual is actually allowed to receive depends on which method is used. This uncertainty makes the 90 MME level clinically less than meaningful and potentially dangerous.

Existing research does show an increased risk of addiction and overdose as the daily dose of an opioid medication rises. But this is exactly what we should see. Most substances are more dangerous in larger quantities, after all. But each patient is different: gender, age, health status, prior opioid exposure, and other factors all play a significant role in determining a safe and effective dose of an opioid medication.

A cutoff like 90 MME is at best arbitrary. At worst it leaves some patients undertreated, and may harm patients who are forced to taper to the 90 MME threshold from a higher dose that has been safe and effective for them.

In addition, it is not entirely clear how the magic number of 90 MME was determined. The CDC developed its guidelines in a largely closed-door process that involved outside consultants whose identity was not revealed at the time. Most magical numbers are like this: their justification is thin and often obscured.

Meanwhile, the CMS and states like New Jersey and Maine are ignoring more important numbers. A recent STAT News article reported that opioid prescriptions have been falling since 2012 and that the misuse of pain relievers bottomed out in 2014. In other words, opioid prescribing is no longer a driving factor in the opioid crisis -- street drugs are.

The magical number of 90 MME is simply not justified. The relative risk of prescription opioids, in particular for people with chronic or intractable pain, is quite low. This fact was ignored in the CDC guidelines and in state government regulation. But it should be obvious: Most Americans have taken opioids at some point in their lives, whether after trauma or surgery or as a part of dental care. And it is abundantly clear that the majority have not become addicted to opioids. Again, the magic number is not real.

On February 9, 1950, Senator Joe McCarthy gave a speech in Wheeling, West Virginia, claiming that the U.S. State Department was infested with Communists, specifically 205 of them. This number helped launch a wave of political repression, fear-mongering, and social paranoia that we now refer to as McCarthyism. Nothing good came of that era, except maybe a cautionary note about how magical numbers can contribute to tragic results.

We are facing a similar risk with opioids, a magical number motivated by magical thinking by regulators and policymakers -- none of which is likely to help address the opioid crisis or the tragedy of addiction.

Instead, millions of people who may benefit from short-term opioid therapy after trauma or surgery will be denied effective medication for pain management, and tens of thousands of people with chronic conditions for whom opioid therapy is a critical component in maintaining a reasonable quality of life will be harmed. These are real numbers that we really need to pain attention to.

Roger Chriss suffers from Ehlers Danlos syndrome. Roger is from Washington state, where he works as a technical consultant who specializes in mathematics and research.

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.

Signing a Pain Contract in the Age of Opioid Phobia

By Crystal Lindell, Columnist

I know, I know. Opioids seem to be all that pain patients talk about these days. Blah, blah, blah. We get it, you need drugs. Let’s move on already.

But I don’t have that luxury. Opioids are, for better and for (mostly) worse, a huge part of my life. And I recently decided that I was:

A. Going to need to continue taking at least a small dose of hydrocodone long-term

B. That I really needed a slighter larger, “small dose” to be able to function.

I have what’s called intercostal neuralgia on my right side and the best way I can think to describe it is that I always feel like I have three broken ribs. The pain is no joke. And although it seems to be more manageable these days, it lingers and it hurts like hell, and opioids are the only thing I have found that even kind of helps.

Without hydrocodone I am in too much pain to shower regularly, check email, do my makeup or even sit a restaurant and eat.  With hydrocodone I can pretty much do all those things, like a typical health person who’s just a bit high. 

And yes, I know they are addictive, I know how hard they are to get off of, and I know that withdrawal is hell. I’ve been through it. I took myself down to 5 mg a day from 60 mg day when my pain became more manageable. It wasn’t easy. It took about a year for my brain to deal with that, and the withdrawal issues sucked.

So, when I say I need to be on hydrocodone, I say it with all the wisdom and caution that comes from the personal experience of dealing with opioids — and their side effects. 

And honestly, I’m among the lucky ones. When I called my doctor to ask if I could up to 10 mg a day, he agreed and knew I wouldn’t be asking if I hadn’t given lots of thought to the pros and cons of that choice. 

But that doesn’t mean dealing with opioids doesn’t also suck. 

First, I had to drive two hours each way to see him, because that’s how far away the closest university hospital is to my house and my case is too complex for the local small town doctors. And, as a reminder, I live my daily life feeling like I have three broken ribs. Driving two hours each way sucks. 

Then, when I got there, I had to take a drug test. Some politician somewhere decided people on opioids shouldn’t be using pot. Okay. But peeing in a cup sucks when you’re a woman. It gets all over your hands. You miss the cup and don’t collect enough. It’s just messy. 

But fine. Whatever. 

I peed in a cup. Good news. I’m clean. Well, I mean, aside from the hydrocodone, I’m clean. 

Signing a Pain Contract

Then, I had to sign what is formally called the “Controlled Substances Medication Agreement” — basically an opioid pain contract. At first blush it doesn’t seem like a big deal. As long as I’m a good person, there shouldn’t be any issues, right?

But the thing is literally 21 bullet points long. And it feels like I signed away all of my rights. 

The contract includes things like bullet point number 8, which requires that I get my prescription filled at the same pharmacy every month.

This is annoying because I use my local small town pharmacy, which is closed on Sundays, holidays and every night at 7 p.m. And if I’m due for a refill on a Sunday or out of town for work when my prescription expires, I can’t get it filled early, as bullet point number 14 clearly explains. 

Bullet point 14 also says I have to keep all my drugs in a locked cabinet or safe, and if they’re ever stolen I can’t get an early refill. Guys, that’s just not practical. I take these meds as needed, and sometimes that means I’m at the grocery store or visiting a friend or eating at Taco Bell, and then suddenly they are needed. And at those times, they are in my purse, which doesn’t have a lock on it. 

Bullet point number 11 says I can’t go to the emergency room for opioids, which sucks because sometimes my pain spikes and the only thing that gets it under control is a shot of dilaudid, which I usually get at the ER. I guess now when my pain spikes, I’m supposed to drive two hours to my doctor and hope he’s available to deal with it. 

Oh, and if I’m ever too sick to make that drive, nobody is allowed to pick up my hydrocodone prescription unless I have pre-authorized them, as per bullet point number 13. Of course, it has to be a written prescription — doctors cannot legally call in or fax hydrocodone  prescriptions anymore. 

I also agreed to get random drug tests, allow pill counts. and basically just give up all of my dignity. 

Fine. Okay. I need these medications. So I signed on the dotted line. And I guess I just have to hope I never get robbed, have a flare up or need a refill on a Sunday. 

The thing about opioids is that everyone assumes that if they ever need these drugs they will be able to get them. That anyone who’s truly deserving doesn’t have anything to worry about. But I have to tell you something: I’m a good person. I’m in real pain. I need these drugs. And I’m barely able to get them.

I understand how powerful these drugs are. Going off morphine was literally hell for me. But you know what else is hell? Living every day of your life feeling like you have three broken ribs. 

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

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

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

Stay Engaged Socially If You Are Chronically Ill

By Barby Ingle, Columnist  

It is so important to stay active with your social life when you are living with chronic pain or a disabling chronic condition. It is so easy to isolate ourselves, which can lead to an increase in anxiety, depression and frustration.

Work at not isolating yourself from friends and family. Here are a few ideas that my husband/caregiver and I use:

For Patients:

• If prayer is helpful, keep doing it
• Keep exercising (or start)
• Look for support wherever you can find it
• Maintain a healthy lifestyle
• Socialize as much as possible
• Take in good nutrition
• Remember your caregivers are going through similar challenges

For Caregivers:

• If a patient is grouchy or depressed, don’t see it as an attack on you but as a reflection of their pain
• Learn as much as you can about the patient’s condition and the available medical options
• Remember the patient is not doing this on purpose and is going through many challenges
• Try not to take a patient’s anti-social behavior personally
• Try to avoid being either too babying or too harsh toward a patient
• A patient may feel less guilty if the burden does not always fall only on you. Try to find others to help with their care.

For Both of You:

• Discuss options with a loved one when they are ready to talk about them.
• Join or form a support group. This may be other family members or friends. This will allow you to take a break.

I believe that human connection is so important. When we connect with others and when we have support, we cope better, our pain levels don’t flair as often, and many other health benefits kick in.

We are meant to interact and be a part of society.

I have worked with many chronic pain patients over the years who isolated themselves. Either they or their caregiver came to me asking, “How do I get past this depression?” or “How do I get past all I have lost?”

One woman, who became a good friend over the last 10 years, was injured in her early years of life. She didn’t realize she was isolating herself and that she had stopped maturing psychologically or connecting with others.

Slowly and over time, she changed her patterns of social interaction, concentrated on her feelings, and practiced better daily living (posture, nutrition, stopped smoking). I encouraged her and her caregivers to be more social and pay more attention their feelings. She is now a social butterfly, both online and offline! 

I am also aware that social media or negative online support groups can be very draining when you don’t put up limitations and pay attention to your energy levels.

Find a good balance in life whether you are the patient or their caregiver. Remember you too can have a more meaningful social life that can make a difference for you and everyone around you. 

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

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

CDC Opioid Guidelines Are Not Rules or Laws

By Mark Helfand, DDS, Guest Columnist

I am a 62 year old dentist who had to retire 20 years ago due to Chronic Regional Pain Syndrome (CRPS). It started in my right forearm and has spread to all four extremities. Recently it has spread into my shoulders, fingers, knees and thighs.

I have seen numerous pain doctors over the years (that's another story) and have finally found a compassionate, intelligent doctor. He has the knowledge and conviction to be a physician and to treat me properly.

I feel sorry for all the other patients suffering as I do, who are being treated by people with medical degrees that are too stupid or too scared to treat their patients as they swore to do when they graduated from medical school.

Have they forgotten the Hippocratic Oath to do no harm?

The CDC opioid prescribing guidelines are just that -- guidelines -- NOT rules or laws. As a matter of fact, here is a quote directly from the guidelines:

MARK HELFAND

“The recommendations in the guideline are voluntary, rather than prescriptive standards. They are based on emerging evidence, including observational studies or randomized clinical trials with notable limitations. Clinicians should consider the circumstances and unique needs of each patient when providing care."

The so-called "doctors" (and I use the term loosely) that say they cannot prescribe narcotics anymore or cannot prescribe the same dosage, either cannot read, don't care or aren't knowledgeable enough to know what they are doing.

I have had all the past and current mainstream treatments, except hyperbaric oxygen therapy and intravenous ketamine. I have tried and been prescribed most NSAIDs and narcotics.

I am currently taking fentanyl lozenges every three hours as needed and an experimental cream with ketamine that my pharmacist read about in one of his journals.

He sent the paper to me, I brought it to my doctor, we discussed the pros and cons, and my doctor prescribed it for me.

It is helping, but I am not even close to being pain free. However, I am not "stoned" on drugs. If I was, I couldn't write this letter.

I have some semblance of a life and when the pain gets unbearable, I have the ketamine cream and can take the medication I need without having to beg some non-caring doctor in an emergency room. I have been through that and refuse to go through it again.

I genuinely feel sorry for all the chronic pain patients that haven't been as "lucky" as I am. I am cursed with this horrible, excruciatingly painful condition 24/7, but am blessed by a few angels (my pharmacist, my doctor, my niece, and 3 or 4 lay people) that help me live whatever life I have.

I hope this inspires others in my condition to search for their angels.

Dr. Mark Helfand lives in New York.

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.

We Need a Declaration of War Against Chronic Pain

By Carol Levy, Columnist

When my neuro-ophthalmologist wrote to a surgeon asking him to evaluate me for trigeminal neuralgia surgery he said, “She is being victimized by her pain.”

After I had undergone a number of neurosurgical procedures and treatments, one of the neurosurgeons wrote back, “We have used every weapon in our armamentarium.”

Many in the pain community use the terms “pain survivor” and “pain warrior.”

Looking at pain in the context of war is easy.  In times of war, the enemy is defined as “something harmful or deadly.”  Pain is certainly harmful.  And some patients die from their pain, some naturally and some, sadly, by their own hand.

The government declares a “war” on opioid abuse. But instead of fighting the abusers, illegal sales, pill mills, criminal cabals, unscrupulous doctors and patients who act criminally, they carpet bomb and ignore the innocent casualties.

The result emboldens the enemy (pain), and winds up costing innocent patients, doctors, insurance companies and ultimately the rest of the country.

It is a proven threat in other ways as well. People living with chronic pain who are employed use more sick days then those without pain. Those whose pain is untreated or undertreated may become disabled and leave the work force altogether. The cost of lost productivity alone is estimated at up to $335 billion a year.

Add in the cost of healthcare and the total economic cost of chronic pain is estimated at $635 billion annually, more than the yearly costs for cancer, heart disease and diabetes.

The government has declared war on those diseases. But for some reason chronic pain and its costs are ignored or denied.

War is a competition between opposing forces. Instead of pain patients and the government working together to appease the scourge of chronic pain, we have chosen sides. One side just wants the pain to go away. The other side cares more about fighting the “opioid epidemic.” The only weapon we have is our voice.

The U.S. Senate repeatedly refused to pass the National Pain Care Policy Act, despite the House passing it in 4 separate sessions, starting in 2005.

Republican congressional leaders now want to replace the Affordable Care Act (Obamacare), which would include the repeal of Section 4305, which calls for more research, education and training in pain care. Another battle being lost by the pain community.

Our goals may be different. As a patient, we want the pain to end. As a country we want the soaring cost of care to end. If we can just find a way to end the pain, we will reduce, and maybe even end, the cost to the country.

It will take more than a detente between the government and pain patients. It requires an alliance – with active involvement on both sides.

War is hell. So too is chronic pain. It is time the battle was joined. By country and by patient.

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.

Waiting for My Pain Medication to Be Stripped Away

By Sheryl Donnell, Guest Columnist

Up until recently, I thought I was coming through this opioid crisis unscathed. My pain management doctor has been with a top clinic for many years and is highly respected and generally above reproach.

We did not have that dreaded conversation virtually everyone else with chronic pain I know has had -- until September 13th, 2016.

That night, I fell and broke 5 bones in my foot, which was already affected with Chronic Regional Pain Syndrome (CRPS). The pain was so incredibly severe.

I laid on the floor from 2 am to 10 am before I could stay alert enough, and not pass out from shock and pain, to get to a phone to call my husband upstairs for help (he is deaf in one ear). It took 4 paramedics to get me off the floor and into an ambulance.

Once at the hospital, even though I was writhing in agony and still passing out literally from pain, the doctor never examined me or my foot. She didn't care I had been on an ice cold floor for 6 hours. All she heard was "chronic pain patient" and she was done with me.

SHERYL DONNELL

I begged her to call the pain experts my doctor worked with so she could get some guidelines for treating me, but she didn't see a reason. I asked if she was familiar with CRPS, and she proudly said no and it didn't matter. She sent me for x-rays. No sooner did I get back in my room from another horrifyingly painful experience did she announce nothing was broken and to go home.

I sat there stunned. I had heard the bones break. I knew there were fractures. I begged the nurses to do something. I had not even been given a single Tylenol. This doctor firmly believed I was a drug seeker and wanted to bounce me.

The nurse started reading my discharge papers, which said, "Come back if you have any of these symptoms." I started crying harder. I said I have every one of those right now! She was practically in tears herself.

Then my husband asked, “What will he do when we get home? We can't even get her into the house!” The nurse told him to call the paramedics again to help get me back inside my home, which we did.

My husband called in 24-hour care workers to help me so I could manage a bit. It was agony going to the bathroom, even with a bedside commode my mother brought.

The following morning, the paramedics came back and helped me into the car. We went downtown for a pain injection to try to stop a progression of my CRPS. While there I insisted on new x-rays, which my pain doctor of 9 years grudgingly agreed to -- mostly to shut me up. He said come back in a week for another shot.

I asked for an increase in my pain medication. My biggest shock that day was his response. He said there was no reason for an increase! What? We went home to 24-hour care and instructions to start weight bearing exercises asap!

A full week later with not a single call, we returned to my pain management doctor for my second injection. He casually mentioned the results of my x-rays, which showed that I had 5 broken bones in my foot. No call for an entire week. I was left to think I was nuts and was trying to bear weight on a severely fractured foot!

I was not offered, nor were my requests for additional pain medication granted. I was told to come in every week for four more weeks (in great agony and great difficulty) for pain injections which did very little. However, I did not have a spread of my CRPS.

I did lose about 8 weeks of my life again. My pain levels were so extreme I did nothing but sit in my recliner and do a lot of crying. And realize how lucky I was to have family support, the ability to pay for 24-hour caregivers, and to be believed I was in the kind of pain I said I was in. My adult daughter moved home for a month to help me and my husband with caregiving duties.

What do other people do?

Even after my 6 weeks of pain injections, when I requested a short term increase in pain medication to help me rehab my still very painful foot once I was cleared by my orthopedist, I was again turned down by my pain management doctor.

It is now 5 months after I broke my foot and I cannot complete my rehabilitation because my pain is still so intense. I know if this had happened 5 years ago, I would not be suffering like this.

Even though my pain has worsened and I need to rehabilitate my injury, the CDC has arbitrarily changed the rules and I must suffer. My doctor's hands are tied.

I lose more and more days spent doing things I enjoy or need to do because the CDC’s “experts” sat in a room and made decisions based on flawed data and street drugs; not real patients who follow the rules of their pain contracts and don't seek out multiple doctors or illegal methods to get medication. I follow all the rules, just like 99.5% of my peers.

We are suffering and living in fear that we will be next to have our medication stripped away from us, through no fault of our own. And then the real terror begins.

Sheryl Donnell lives in Illinois. She suffers from CRPS and fibromyalgia.

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 Epidemic of Fake Opioid News

By Roger Chriss, Guest Columnist

The New England Journal of Medicine recently published a study called “Opioid-Prescribing Patterns of Emergency Physicians and Risk of Long-Term Use.” It looked retrospectively at Medicare patients and found that some emergency room physicians prescribed up to three times more opioids than others did.

The article did not even mention words such as “abuse” or “addiction” in any context. Moreover, the data was for the period between 2008 and 2011, long before the 2016 CDC opioid guidelines or the various efforts by the FDA, DEA and state governments to restrict opioid prescribing.

The result of this study has been a surprising explosion of fake news about the opioid crisis. It is almost ironic that the spread of this news looks more like an epidemic than the actual opioid crisis does.

The New York Times published the article "Long-Term Opioid Use Could Depend on the Doctor Who First Prescribed It” on February 15, marking the first step in the outbreak of this new opioid meme.

The article noted that the study looked at elderly people in the opening paragraph, but did not mention the decline in opioid prescribing between the study period and the present.

Moreover, the article stated that "as the opioid epidemic continues to devastate communities around the country, the study was the latest attempt to identify a starting point on the path to excessive use.” This was stated despite the fact that all the study showed is that people who take opioids are more likely to become dependent or addicted to them. Clearly this result is both axiomatic and not a priori interesting.

A day later there were more articles, such as “Physicians’ opioid prescribing patterns linked to patients’ risk for long-term drug use” from the Harvard School of Public Health and “How Long You Stay On Opioids May Depend On The Doctor You See In the E.R.” from the Kaiser Family Foundation.  

Both articles add more drama to the study’s results, though each does mention that the study was done on Medicare patients. Oddly, the Harvard article waited until almost the very end to tell us that, as if this is an incidental point with respect to the study and its results.

On February 16, the fake news took a turn toward the dramatic and dire. The Chicago Tribune came up with an article called "Your ER doctor could determine your likelihood of long-term opioid use."  We are told that "physicians are often reluctant to change treatment regimens when patients are happy with what they have,” as an explanation for why doctors were resisting not prescribing opioids.

Vox took the fake news to a whole new level with an article called "Certain doctors are more likely to create opioid addicts. Understanding why is key to solving the crisis."  The Vox reporter provides a quote from the lead author of the study:

“'For patients, Barnett said the message is clear: “Patients should ask their physicians, ‘What are the side effects of me taking this opioid and do you think my pain could be treated effectively [another way], because I know how dangerous these medicines can be."

Opioids have now become dangerous medications.

Now imagine that the first headline from The New York Times had said “Medicare Patients Receive Different Amounts of Pain Medication depending on ER Physician.” That would be a fair a description of what was reported in the original NEJM article.

And consider this alternate interpretation of The Chicago Tribune quote about happy patients: These patients are elderly, at low-risk of addiction, and being treated successfully with a well-known medication. This is not something to worry about, especially since the opioid crisis is being driven by illicit substances used primarily by younger people and outside of medical settings.

Forgotten in all of this reporting is the data from the CDC and other government agencies, which clearly shows that opioid prescribing is down considerably compared to just a few years ago, while at the same time the number of overdoses and deaths involving opioids used illicitly has risen.

The data also shows that most people who abuse opioids are young, not elderly. In other words, physician prescribing is not a major driver in the opioid crisis and Medicare patients are not representative of substance abusers at all.

In a matter of days, an article in a respected medical journal describing a retrospective study of the Medicare population has morphed into some doctors being more likely than others to create opioid addicts and unlucky patients are getting hooked.

This is an epidemic spread of fake news, of a dangerous meme, and of a new challenge for chronic and intractable pain patients. Accurate information is the best defense, but that takes work.

Roger Chriss suffers from Ehlers Danlos syndrome. Roger is from Washington state, where he works as a technical consultant who specializes in mathematics and research.

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.