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.

The 411 on Calmare Scrambler Therapy

By Michael Cooney, DC, Guest Columnist

As a chiropractor who treats various pain conditions caused by injury or disease, my biggest frustration is when our therapies do not achieve a successful patient outcome.

Often, “treatment-resistant” patients are forced to seek out more invasive procedures – surgeries, spinal cord stimulators, or powerful narcotics such as ketamine − where success has been uneven, but side effects can be significant.

I wasn’t comfortable recommending these “next level” neuropathic pain treatments for my patients. So my partner Dr. Robert Kelly and I spent two years looking for a non-invasive therapy that didn’t cause pain or come with added side effects.

Through a contact in Italy, we discovered Calmare scrambler therapy, which treats several types of drug and treatment-resistant pain, a big plus for our practice. After undergoing clinical training to use the machine and eventually testing it on patients, we saw results after just a few treatment sessions, in the majority of cases.

I’ll be honest, our aim in adding Calmare to our treatment offerings was designed to help our patients who were not responding to traditional pain therapies. No one was more surprised than I to experience the global interest in this alternative treatment option.

We have been performing Calmare Therapy since 2011, treating patients from coast-to-coast and as far away as Australia, the UK, South Africa and Brazil.

Today, we treat children, adults and seniors battling CRPS/RSD, fibromyalgia, neuropathy after chemotherapy treatment, and pain that develops after surgery or from diabetes. We have also treated many people with neuropathic pain after a shingles diagnosis.

How Scrambler Therapy “Talks” With the Brain

The brain’s reaction to pain can be compared to learning to play the piano or memorizing a poem. The more the body processes pain, the stronger the connections between pain nerves and the brain become.

When someone is injured, the brain sets up a process to heal the injury. For example, cells carry away dead tissue or it increases blood flow to the injured area. Eventually, the brain realizes the injury has healed, and cuts off the pain message.

But for some people, the brain never sends the all-important message: “There’s no more injury here. You can stop sending that pain signal.”

That’s where Calmare scrambler therapy comes in.

Using small electrodes (think EKG pads) judiciously placed in the region of the injury, the device sends a mild electric signal to the brain through the electrodes.

This message overrides the brain’s confused pain signal and corrects it to a “there’s no pain here” message.

We recommend a series of 10 daily scrambler treatments. But in many cases, the pain is lessened for the patient as soon as the first treatment.

The machine we use, the MC-5A Calmare device, has been tested in clinical trials at some of the most prestigious research institutions, including the Massey Cancer Institute at Virginia Commonwealth University, the Mayo Clinic, and the American Society of Clinical Oncology. Their studies reported significant reductions in pain associated with cancer treatment and other chronic pain conditions.

The Value of Alternative Medicine in Treating Neuropathy

The majority of patients we treat with scrambler therapy come to us frustrated and exhausted by the endless search for pain relief. They have often resorted to unproven surgeries, experimental procedures, or have used powerful pain medications that leave them mentally and physically debilitated by the drug’s side effects.

I encourage people with treatment-resistant neuropathy and their families to research and consider less invasive, alternative solutions to combat the effects of chronic pain. In some cases, the cost can be comparable to prescription medications and in-patient co-pays. The outcome can be life-changing.

Regardless of the pain therapy you choose, keep in mind there are treatments that do not involve narcotics, surgery or invasive procedures, which can result in more pain and discomfort.

Keep looking -- network with people who have your medical condition, conduct your own research, and reach out to doctors who understand the value of alternative therapy. Ask the provider to put you in touch with another patient who had the treatment. We enthusiastically offer this service through our Patient-2-Patient program.

There may very well be a solution out there to minimize your pain. But often, it’s up to you to discover it.

Michael J. Cooney has been a doctor of chiropractic for more than 30 years at Rutherford Allied Medical Group and Calmare Therapy NJ in Rutherford, New Jersey. He is one of six certified providers of Calmare in the U.S. Dr. Cooney can be emailed at calmarenj@gmail.com.

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.

Four Years of Chronic Pain

By Crystal Lindell, Columnist

This month marks four years since I first woke up with random pain in my right ribs.

Sometimes it feels shorter than that. Sometimes, it feels so much longer.

I didn’t want to write this column. I didn’t want to acknowledge this anniversary.

I’ve been doing so much better lately. The pain, which is likely intercostal neuralgia, is way more under control than it used to be, thanks in large part, I believe, to getting my Vitamin D levels into the normal range.

But it lingers, it’s always there, like a black shadow and a heavy cinder block, pulling me back.

And after taking myself from 60 mg of opioids a day down to 5 mg, I decided this month to go back up a bit because the pain has been too much to bear. After talking with my doctor, we decided to go with 10 mg a day.

It feels like defeat.

I don’t know why the pain seems to be worse these days. It could be stress, it could be the weather, or it could just be because I wear Mac red lipstick almost daily now — it all really does feel that arbitrary.

And even though I try to manage all the possible triggers, sometimes it just flares up and leaves me unable to get out of bed. On those days, even the hydrocodone doesn’t touch it.

It’s frustrating. And I thought maybe if I didn’t write this column — if I just ignored the four-year mark — I could pretend I was actually all better.

I’m not though. Obviously, I’m not.

The pain still impacts so much of my daily life. I still factor in time to rest after a shower. I still make careful calculations about how much driving I can really do in a day before the pain gets too bad. And I still take lots of sick time from work.

I spend more time than I should counting hydrocodone pills and figuring out which bras hurt the least and avoiding hugs.

I do feel like I’m better than I was though. I’m completely off morphine, which feels like a victory. And most of the time, the pain is completely manageable with a very small dose of hydrocodone. Also, I’m lucky in that I can fake being well long enough that most of the time it doesn’t really impact how others see me. Most people have no idea I struggle with health issues unless I outright tell them.

It’s been a long four years. And I wouldn’t wish chronic pain on anyone. All of the good things — all of the ways I’ve learned to be more compassionate, all of the writing it has inspired, all of the bonds it helped me cement with family and friends who helped me out — I would give it all back if I could live without pain.

Alas, that is not my fate. This is my fate. A constant battle between living like a healthy person and feeling like a sick person. Medical bills. Driving two hours each way to see specialists. Sleeping only on my left side. This is my life. 

But at least I have my Mac red lipstick. Even the rib pain can’t take that away from me.

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.

Should I Tell Someone About My Invisible Illness?

By Barby Ingle, Columnist

It can be tricky deciding when to tell someone about your chronic pain or invisible illness. You can never take back information once it is shared.

If you choose to disclose that you have a chronic condition or disability, you should decide when and how to do it. Take the time to think about different situations and how you wish to handle them.

Many people feel it is not their place to ask about your physical conditions, but knowing about your pain and limitations could help them understand where you are coming from with your thoughts and actions.

I know a chronic pain patient who liked a neighbor and was interested in dating him.  He often helped around her house with handyman projects, and she would see him out on his porch and go out and talk to him. Eventually, he asked her out and they had a great time.

Over the next few months, they had dates scheduled but she ended up canceling a lot of them. She was just in too much pain. He began to think she was not interested in him and started to pull away.

Friends encouraged her to tell him about her medical condition and what she was going through. She did, and he stuck around for a while, but in the end it did not work out. However, they remained friends and it helped her see that she could still have a social life.

If you’re in this or another social situation, you should think about the following when deciding whether to disclose your condition and how it affects you:

• Are you able to participate in activities using your coping skills and tools?
• Do you need accommodations?
• Are you able to perform the activity safely if you choose not to disclose?
• Do you think the other person will react in a way that’s appropriate for where you are?

If you are not sure about the latter, you may want to wait until you are in a private setting.

If the situation becomes an intimate relationship, it is very important to share even if it means losing that person. It is not fair to them or you to hold that information back.

If your disability is in remission or typically under control, is there a reason to disclose? It is possible that flare-ups may keep you from future activities, so it would be a good thing to disclose ahead of time. The education you give them may also help someone else they meet along the way.

Finally, how will you address misconceptions about your chronic condition when you disclose? Some people do not believe in treating pain with narcotic medications or had a bad experience with someone else in their life with chronic pain.   

Not disclosing is wrong if you are in a situation that can cause others harm. For instance, when getting on a plane, you shouldn’t be sitting in the exit row. If assigned by mistake, notify the flight crew.

When choosing situations and activities where you do not want to disclose your disability, take time to carefully analyze the activities you are able to do and plan accordingly. Remember, you can always reveal more information later as needed.

When Will Doctors Speak Out for Their Pain Patients?

By Michael Thompson, Guest Columnist

I am a retired clinical social worker and a licensed chemical dependency counselor.

I had to retire about six years ago, at age 62, when my rotator cuffs started shredding on a chronic basis.  I also have osteoarthritis in both knees and peripheral neuropathy with severe pain in both feet and hands.  It’s been several years since I was able to wear shoes.   

I have also been diagnosed with Chronic Regional Pain Syndrome, which just means we don’t know what the problem is but were just going to call it blah, blah, blah.  That’s medicine for you – an art, not a science.

I am allergic to non-steroidal anti-inflammatory pain medication.  The last time I took naproxen, my blood pressure (which is normally high) dropped to 80/50.  I literally saw the pearly gates.  I ended up in the hospital for about a week. 

To put it lightly, my genes are rotten.  Everything seems to be breaking down in the latter years of my life and it all hurts. 

For about six years I was on a relatively high dose of opioid pain medication. Life wasn’t great, but it was pretty good.  I was able to play golf and work out three times a week in a physical therapy program.  I could work in the yard and around the house. Despite all of my multiple medical problems, I had an acceptable quality of life. 

MICHAEL THOMPSON

Then last year the CDC guidelines for opioid prescribing came out. My pain specialist freaked out and abruptly informed me that in order to keep the DEA from her door, she was going to have to reduce the amount of opiate medication she was prescribing for me.  My dose was cut in half.

In less than a month, I cratered.  I was in such intense pain 24 hours a day that I couldn’t sleep.  I couldn’t function.  My quality of life went from decent to nonexistent.  I was no longer able to work out and gained a good deal of weight. I couldn’t walk across the room because of extreme pain.  I spent my time at home waiting until it was time to take my next dose of medication. 

I tried changing my schedule, so that instead of taking a pill every six hours I would take one when I really needed it for severe pain. That seemed to work better, but I wound up taking more pills than I should and came up short at the end of the month. I was left for 48 hours with no medication at all. 

Even though I had never abused my medication, my pain doctor refused to help me out with an early refill, saying that it was just too bad and that the DEA would not let her write a new script even a half a day before it was due.  

I was stunned, though I should have known better.  For two days I thought I was going to die.  It wasn’t just the withdrawal. It was the unmasked intense pain. 

I worked for a time early in my career with an addiction physician who taught me that chemical dependence was a lot easier to treat than chronic pain, because of the all-consuming nature of pain.  He told me that with addiction you might wish you were going to die, but with the strain that untreated pain puts on the body, you might actually die.  After experiencing both, I can vouch for the truth of his words.

Needless to say, I have not made that mistake again.  Since that time I have maintained a strict regimen, even if that meant that I would have to white knuckle the last few hours before the next dose is due.

When I saw my doctor last month, she told me that the DEA had instructed her that she could not prescribe more than three pills a day to any of her patients.  Next time I see her, she will reduce me to four pills a day.  The month after that, she will only prescribe three a day. 

I don’t know what I am going to do when that happens.  It terrifies me.  I have never considered suicide as an option, but when a person is without hope that things will improve and they face intense grinding pain 24/7, I can understand how some people might find suicide appealing.  As a therapist, I never thought that I could understand that kind of thinking, but I do.

I asked for a referral to a psychiatrist because of her suggestion that with their advanced training, they might be able to prescribe more medication or a different opiate that works better. 

The psychiatrist I was referred to was the CEO of a local rehab program.  When he discovered that I was retired and on Medicare, and that I didn’t have a generous insurance package for rehab, his manner changed abruptly.  He treated me like I was a med seeking (which I was) and stone cold junky (which I was not). 

After an extremely presumptuous and rude exchange (it was clear that he was trying to impress his two cute interns and to show them just how you handle addicts), I informed him that I just did not feel that we were a good fit and left. 

It was clear that he knew nothing about my background or my history. And when he found out I didn’t have insurance money to feed his program, he lost interest in finding out anything about me.  I pity his patients and his employees. 

My next step was to seek a second referral. The doctor I was sent to was another pain specialist, who informed me that she was only prescribing two pills a day to her current patients, and so I should stay with my current provider.

I don’t know whether the issue has been a poor roll out of the CDC guidelines or if doctors aren’t reading them correctly and feel it’s better to be safe than sorry – even if that means leaving their suffering patients in the lurch. 

Either way, it’s a hell of a way to run a railroad and a lousy way to practice the healing arts.  Leaving so many people in agony is criminal.  For a doctor to do this, they might as well sell insurance for all the good they are doing their patients. What happened to the Hippocratic Oath?

I have to confess.  I am getting desperate.  With the level of pain and stress I am under, my health is breaking down. I can understand why some might consider suicide as a real option as an alternative pain solution. 

The CDC needs to consider how this will affect the aging population, for whom opiate medication may be the only path to a decent quality of life during their later years.  I mean, what are they afraid of? Lines of aging junkies sitting in the gutter with a needle in their arm? 

It is interesting to note that none of this is affecting the addict population, other than to increase the number of people seeking pain relief on the black market.  Addicts will always find a way.  Legitimate seniors with palliative and end-of-life pain concerns, and others with legitimate pain needs, have nowhere else to turn. 

Medicine is failing us. This is medicine by law enforcement. Scare the doctors and the problem will go away.  If the DEA is frightening doctors with the loss of their license, the CDC needs to step in and call off the dogs.

I just hope this communication to my pain doctor comes before I die from complications of intense pain.  What a way to go. Death by good intentions, but poor communication.

Who speaks for us, if not the doctor?

Michael Thompson lives in the Dallas, Texas area.

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 Safe Way to Healthy, Restorative Sleep

By Ellen Lenox Smith, Columnist

For many of us suffering from chronic pain, coping with our medical issues can be physically and emotionally draining. Often, the lack of healthy sleep is the culprit.

Living with Ehlers Danlos syndrome (EDS) and sarcoidosis, I used to constantly wake up in the middle of the night with so much pain it was impossible to get any form of rest. When I was teaching, I somehow went for years trying to teach on “empty” due to a chronic lack of restorative sleep.

I remember having to cheat and use a seating chart to remember the names of my wonderful students, who were sitting right in front of me. These were students I had known, loved and taught for months. It was embarrassing, heartbreaking, and created a sense of loss and hopelessness.

Thankfully, those days are gone. I have gone from years of almost no quality sleep to being someone who goes to bed at night and wakes up in the morning feeling well rested. I don’t even remember any dreams, so I am getting the real REM sleep!

How did I do it? A teaspoon of oil made from medical marijuana. I take it before bedtime, mixed with a little applesauce or a small amount of food.

Within an hour, my body is ready for bed and sleep. 

For years I made this oil at home on top of the stove, but today enjoy using the Magical Butter machine. We find that oil made from the indica strain of marijuana works best for sleep. Directions for making the oil can be found on our website. 

I am now both a medical marijuana patient and a caregiver in the state of Rhode Island. Patients visit us with a variety of different illnesses, but the one thing they all have in common is lack of sleep. Without sleep, you lose hope and courage to move forward with your life. Each patient that has tried this oil has found that it gives them rest and hope.

Recently, a young woman and her husband came to our home. Living with both EDS and Chronic Regional Pain Syndrome (CRPS), she had a difficult life, but was hoping to find something to make it easier. We have the same pain doctor and he suggested she get in touch with us to learn about cannabis. 

The first night that she tried the oil, she slept for eight hours and was both thrilled and shocked. She said even her face looked calmer and more rested.  She is now happier, hopeful and has more strength to get through the day.

There was another patient sent to us who was a paraplegic in constant pain. He was angry, miserable and wished he hadn’t been given life-saving surgery after his accident. He was at a loss as to what to do to cope with the life he was now given. 

He tried the oil and was shocked what it did for him. From that point on, the desperate man who first called me and couldn’t even be understood due to his level of pain, was happy, laughing and finding some meaning in his difficult life. He later passed, but the oil gave him a better quality of life and a sense of purpose again.

We have seen one success after another of pain patients getting real quality sleep and rest. We have seen it work for cancer patients, and those suffering with post-traumatic stress disorder, multiple sclerosis, back pain, fibromyalgia, arthritis and other conditions.

For those of you who are caught up in opioid hysteria and can no longer get medication, I hope you take a moment and think about trying cannabis oil at night for rest. I have used it safely for a decade, since I am not able to metabolize even an aspirin or Tylenol, let alone any opiate. May you find the courage to try it and get the same results.

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

For more information about medical marijuana or to contact the Smith's, visit their website.

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