July 28, 2022

Waiting and Wanting to Die in Canada

July 28, 2022/ Pat Anson

By Ann Marie Gaudon, PNN Columnist

RIP Margaret Bristow October 23, 1959 – August 10, 2022

No, that’s not a typo. My friend Maggie will be dying in a few days, on August 10 to be exact.

Confused? I am trying to make sense of this, too.

One night a few months ago, I was hurting. Oh, my goodness was I hurting! I was lying in bed and decided to do a quick body scan.

I began with my head. I had a throbbing headache, which I suspect was a result of fairly severe TMJ. It felt like my jaw was locked solid, which is terrifically painful, and my tongue was burning as well.

I also was suffering with tinnitus that night, which is typically accompanied by severe ear pain. I also felt gastroesophageal reflux burning a fiery hole in my gut.

Next up was a severe back injury from 2017, which was irritated and oh boy did that ever hurt! Down I went to my bladder, which was burning from an interstitial cystitis flare. Pudendal neuralgia had nerve pain radiating from my sacrum down both legs and into both hips. Osteoarthritis had my hips, knees, legs and ankles throbbing.

Finally, both feet felt like I had knives stabbing into them over and over, as I now have plantar fasciitis to add to my list of pain conditions. What a state I was in. Neuropathic pain, visceral pain, and musculoskeletal pain -- all in a rage.

Nine different pains in total that night, which is not at all typical for me. I had nowhere to put this earthly body for more comfort. Sitting or lying on my back increased the pudendal neuralgia; lying on my side increased my ear and hip pain; lying on my stomach was painful for my neck; and standing increased the plantar fasciitis.

I had nowhere to go, so I lay there quite still. In case you are wondering, yes, I have medications and I took them all. I also took everything OTC that I had in the house. It didn’t seem to make any difference; the pain was surging and the medications were no match for it.

I thought to myself that if this were to become permanent, I would surely not survive it. My problem-solving brain told me the only way out would be the release of death. If nothing could tame all of these pains, what choice would I have? I couldn’t work like this and I couldn’t engage in relationships like this. I could barely string together two sentences in my head.

I could not function in any capacity, so I lay there quite still, trying my best to be with the pain, but not overtaken by it. In that one horrible night, I understood why my sweet friend had chosen to die on August 10, 2022.

‘I Would Rather Have My Medication Back’

Maggie Bristow has been in chronic pain for over 25 years from fibromyalgia, degenerative disc disease, spinal stenosis and arthritis. Her pain became so severe that she was given opiate medication, which she took for many years. By 2016, the Ottawa woman felt the medication was not working very well, because her pain was increasing.

Already feeling pressured to reduce his prescribing, her pain physician took her off opiates and tried many other types of treatment, but nothing worked. He told her there was nothing else left to try.

To this day I do not fully understand this part of Maggie’s story. Was she properly titrated on opiate medications? Were they combined with something else? What about novel approaches like opiates placed in the spinal fluid? I will never know. I do know that Maggie felt she was out of options.

“My body constantly feels like a blow torch has been taken to it. I’ve not been able to sleep in a horizontal position for 20 years and I am housebound due to the intense pain,” Maggie told me.

“Simple tasks like opening the mail, preparing food and maintaining good hygiene are agonizing, monumental tasks. I would rather have my medication back or be allowed to die peacefully.”

With her pain increasing, Maggie just wanted it to stop. That year she applied for assisted death under Canada’s Medical Assistance in Dying law (MAID), and was flatly denied because she did not meet the criterion that a natural death be “reasonably foreseeable."

Maggie persevered and once again in 2019 applied for MAID. For the second time, she received a phone call telling her that her request had been denied. She felt very deflated, upset and confused.

Quality of life continued to worsen for Maggie and she waited patiently for new legislation to pass last year amending the MAID law, which removed the criterion that “death was foreseeable.”

When she applied for a third time, the MAID physician requested a new MRI, a second opinion from another neurologist, and someone to give her opiate pain medication. Maggie was dumbfounded at this third request, because she was searching for five years for opiates to no avail. She chose to ignore that, and responded to the other two requests which showed results that her spine was “totally inoperable.”

Weeks and months dragged on for Maggie. Finally, a call came from her general practitioner who told her that the MAID physician advised that she tried to contact Maggie with no success. Maggie said that was nonsense because she is housebound and never heard from her. The truth was that the MAID physician was not comfortable signing off on her case.

Part of the policy for MAID is that if a doctor is unwilling to help you, they must refer you to another doctor who will provide service for you. This however did not happen. Maggie was left hanging and extremely put out for all the time wasted when she could have been researching other avenues. She was now desperate.

A phone call took place to provincial MAID, with Maggie telling them that the Ottawa MAID declined her request. What were her options? They told her they would just refer her back to Ottawa. Really? Maggie was now quite angry and she called her GP, who reached someone else in the organization and found a MAID physician in Toronto who would help her to die.

This is where I go off the rails. A doctor will not help you get opiate medication, but will help you die? This was not the Canada that I was born into.

The MAID physician in Toronto reached Maggie via video conference and after her assessment said she would sign off immediately on her request. Maggie felt good about this but also knew that it takes two doctors to sign off for your peaceful death to happen.

Time dragged on again. The GP called her contact to ask what was happening and soon another video conference with a second MAID physician took place. This physician did not give Maggie any indication of what the decision was. Weeks later, Maggie received a call from the first doctor, who told her that her application was approved.

They would indeed help her to die as per her wishes, on August 10, 2022 at approximately 2:00 pm. They will have a long drive to get there, but Maggie’s sister will be with her. Afterwards, her organs will be harvested for donation and her body will be shipped back to Ottawa for cremation.

Maggie blames Health Canada for the many problems she and other Canadian patients in severe pain have getting opiate medication.

“People like me, and there are many of us, continue to suffer. Suicide is our only option. This is a level of cruelty that is very difficult to fathom and really has to stop,” she said.

The world will be losing a gem on August 10. Maggie is a warrior woman for all that she has endured. She is a survivor through and through. I have seen grace, generosity of spirit, love, and even a sense of humor through all of this.

Is Maggie beyond treatment without a doubt? I will wonder about that for the rest of my life as I remember my sweet friend and all that she embodied.

Maggie’s partner Brian, the love of her life, passed in 2008. She will be survived by two children and five grandchildren.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management. She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

If you are in crisis and live in Canada, help is available by calling the Canada Suicide Prevention Service at 833-456-4566. If you live in the US, help is available by calling the 988 Suicide & Crisis Lifeline (formerly know as the National Suicide Prevention Lifeline) at 988 or 1-800-273-8255 (TALK). You can also call 911 for immediate help.

July 25, 2018

Pain Management Not the Same as Addiction

July 25, 2018/ Pat Anson

By Marvin Ross, Guest Columnist

It's bad enough that mental illness is, for some strange reason, paired with addiction. But now the Canadian Mental Health Association (CMHA) wants to include pain management as part of its “National Pain and Addictions Strategy.”

Addiction is a terrible affliction for the person addicted, for their family and for society. Of that, there is no question. But it is now considered a mental illness and I have no idea why. As I wrote once before, “Addictions at some point involve choice. You made a decision to go into a bar and start drinking or to snort coke, take opioids or inject heroin. No one has a choice to become schizophrenic, bipolar, depressed or any other serious mental illness. There is no choice involved whatsoever.”

I also cited smoking, which most people of my generation did and most of us quit. I smoked two packs a day and quit because my wife has asthma and was pregnant. I was motivated.

I also pointed out that during the Vietnam War, 40% of troops used heroin and the government was fearful of what would happen when they came back. Fortunately for all, 95% of those troops gave up heroin without any intervention whatsoever. They were no longer in a dangerous war zone trying to escape anyway they could.

Chronic pain patients are generally neither addicts nor mentally ill. What they are addicted to is being as pain free as they can be. Chronic pain results from any number of valid medical conditions, severe trauma and/or botched surgical procedures. For many, opioid medication is necessary to have any quality of life.

But CMHA sees opioid prescribing as an inevitable bridge to addiction:

“CMHA is currently collaborating with research partners to explore the efficacy of multidisciplinary care teams and their role in pain management and opioid tapering. CMHA also believes that creating a National Pain Strategy that includes addictions would allow for more effective training and would better prepare physicians and primary care providers to treat pain in Canada.”

CMHA is correct when they say that pain is poorly managed in Canada and not well understood. But what expertise do they have to make recommendations on how pain should be treated? Their primary recommendation is that we should find alternatives to opiates. And, if we must give patients opiates, there should be an exit strategy, so they do not take them for too long.

This is based on the false assumption that addiction is being fueled by those with chronic pain, even though overdose deaths in Canada are predominantly among males aged 30-39 and involve illicit fentanyl. Contrast that to the demographics of chronic pain, which is mostly seen in women and older adults over the age of 56.

Those are two totally separate populations!

If opioid medication is a contributor to this problem, then why did opioid prescriptions in Canada decline by over 10% between 2016 and 2017, while opioid overdose deaths rose by 45% over the same period?

The CMHA calls for an increase in alternative therapies to treat chronic pain. This is the definition of alternative medicine from the New England Journal of Medicine:

“There cannot be two kinds of medicine -- conventional and alternative. There is only medicine that has been adequately tested and medicine that has not, medicine that works and medicine that may or may not work. Once a treatment has been tested rigorously, it no longer matters whether it was considered alternative at the outset. If it is found to be reasonably safe and effective, it will be accepted. But assertions, speculation, and testimonials do not substitute for evidence. Alternative treatments should be subjected to scientific testing no less rigorous than that required for conventional treatments.”

Opioids work for chronic pain, as found in a 2010 Cochrane Review and by a more recent review in the Journal of Pain Research.

Jason Busse, the chiropractor who helped draft Canada’s 2017 opioid guideline, told me in a Twitter debate that this second study was only for 3 months so it is not relevant for the long term use of opioids. However, Prozac was approved for use by the U.S. Food and Drug Administration after two clinical trials of 6 and 8 weeks duration. Many people use Prozac for years.

Neither chiropractic, massage or acupuncture have been shown to be effective for chronic pain. Many doctors are also pushing anti-epilepsy drugs like gabapentin (Neurontin) as an alternative to opioids, but they do not always work and have major side effects. The same is true for its sister drug, pregabalin (Lyrica).

There is some evidence that medical cannabis may help with chronic pain, but it is very expensive and, even when prescribed, is not covered by public or most health plans.

Members of my family suffer with chronic pain and they do not want a National Pain and Addictions Strategy. What they want is continued access to the pain medication that has helped them carry on as normal a life as possible. There is no euphoria when they take these meds, other than the euphoria that comes from reducing their pain levels sufficiently so they can enjoy a trip to the cinema, theatre, dinner with friends and whatever else gives pleasure.

In June, I attended a meeting in Oshawa, Ontario arranged by chronic pain patients with a representative of the College of Physicians and Surgeons of Ontario. About 30 pain patients attended from all over Ontario and told the doctor how much they were being forced to suffer because their medication was reduced. One woman said she is not capable of getting out of bed to care for her children and would consider suicide if it weren't for them. Similar comments were made by others, but the doctor was unmoved and left early.

If CMHA (and others) can call for decriminalizing drugs and providing the addicted with safe drugs, why can no one be willing to provide pain patients with the same? It is inhumane.

Marvin Ross is a medical writer and publisher in Dundas, Ontario. He has been writing on chronic pain for the past year and is a regular contributor to the Huffington Post.

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.

June 23, 2018

My Opioid Dependency Turned into Addiction

June 23, 2018/ Pat Anson

By Jim Best, Guest Columnist

When I was in my early 40’s, I had an accident at work that injured the discs in my lower back. I tried physical therapy, but after three months of little improvement they performed a discectomy.

The surgery was successful and I had very little pain until a year later, when I re-injured the same area. I was taken to the hospital in an ambulance and a neurosurgeon decided I needed emergency surgery and performed a laminectomy. This time, the pain came back after less than six months. I was in constant pain (most days rated somewhere between a 6-8) and unable to work.

The next ten years included numerous trips to various providers, including pain specialists. I was evaluated by orthopedists and neurologists, and informed I was not a good candidate for spinal fusion surgery due to my overall body structure. They took more than a dozen MRI’s and I was subject to painful spinal injections on a regular basis.

I was also given a discogram, which is an extremely painful diagnostic procedure involving the insertion of needles into the spinal discs. The pain was so severe from this procedure that I passed out. The results were “inconclusive.”

During those ten years I was also introduced to opiate medication. They started me off on Vicodin and I was eventually prescribed OxyContin by my regular doctor. I took relatively small doses to start, but it didn’t take too long before I was being prescribed larger and larger doses.

What I didn’t know was that the more I took, the more I thought I needed. This is known as opioid-induced hyperalgesia, a syndrome in which people can become hypersensitive to painful stimuli due to prolonged use of opioids.

Although at the time I was sure that had nothing to do with my case, now I see where it made perfect sense and I should have ceased my opiate use immediately. However, I continued to use for five additional years.

An important part of my story concerns my addiction to alcohol, which I stopped using in 2005. I was a stalwart member of AA up until 2015, when I had a relapse. I never really discussed my use of painkillers with other people because I was afraid they would think I might have a problem with pills. Of course, they would have been correct, but I fooled myself into thinking I was okay.

That is part of the self-delusion of any kind of drug use, but perhaps more so with opiates because they were prescribed by a doctor and because I felt I had a legitimate reason for using them -- a rationalization I maintained even when I was using far more than prescribed.

Looking back, I do not believe I should have ever been prescribed opioid medication due to my addictive personality. I don’t blame the doctor who prescribed them to me. I would tell her horrible stories of not being able to get out of bed without the pills, or how some days all I could do was sit in a chair and cry. I believe that as a physician (as well as a caring and compassionate human being), she was concerned with my pain and truly thought she was doing what was in my best interest.

It’s important to make one fact clear: I was in pain. Although I certainly hyperbolized my symptoms to my doctor, girlfriend and a few others, I did have daily chronic pain. And I was dependent on the drugs to provide some modicum of relief.

There came a time, however, when the dependency turned into an addiction. I literally could not function without large doses of the drugs. I also began to abuse them by taking more than prescribed and taking them in non-prescribed methods such as snorting.

The end of my use came when I got busted by my doctor. She caught me in one of the myriad of lies I had to tell because I would run out of pills before the next prescription was due. She gave me a script for 10 Xanax and basically told me good luck.

I went through withdrawal for a few days and then, after almost ten years of sobriety, I started to drink again. Eventually, I ended up in treatment. I admitted to the counselors at the treatment center that opioids were also “sort of a problem.” Luckily, they saw through the lie and I was put on Suboxone. I still take the Subs because they help with the pain and I don’t have the urge to use anymore.

I still experience daily pain. Some days it is bad enough that I have to be very careful with how much I exert myself. But I manage to get by without the pills.

As an aside, I feel like the current restrictions being put on opioid medications are too extreme. Not everyone that takes them has a problem and by restricting them, as many states currently are, they are making life very difficult for the ones using them responsibly.

What other people do is their business. For myself, taking such medications is no longer an option. I hope this story helps someone.

Jim Best lives in Minnesota.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

February 20, 2018

I Think of Death Every Day

February 20, 2018/ Pat Anson

(Editor’s note: Pain News Network regularly receives emails and comments from readers in physical and emotional distress because their chronic pain is not being treated or is undertreated. Many have been abandoned by their doctors. And some are having suicidal thoughts.

The following email came from “Sharon” – who lives with chronic pain from neuropathy and a severe hip injury. Sharon gave us permission to publish her email, as long as her full name was not disclosed. Some readers may find her story disturbing, but it is representative of what’s occurring in the pain community and therefore worth sharing.)

By Sharon

When I first got ill, I was an avid backpacker and ran a health food store. A very healthy and health conscious 37-year old woman.

I tried every alternative treatment. The first was hypnosis. Then I tried colonics, lemon and oil heat packs, acupuncture, massage. The list goes on. NOTHING TOUCHED THE NERVE PAIN.

I had an old .357 handgun. The same type police carried at one time. I also had an old .45. I thought about it every single day.

But I didn’t want my family or friends to find me like that. A bloody picture in their heads whenever they thought of me.

Taking your own life because of the ignorance of others, just isn’t fair. To be pushed into it by others. Especially when there is medication that works.

Once I finally decided to try opiates, no doctor would listen to me.

I did everything they asked. I jumped through all the hoops. Multiple times.

I was shamed over and over again, because I was in pain. I was called a malingerer.

Never thought I would get sick at such a young age. I thought I’d be healthy and happy like the all the other healthy women in my family.

I finally did find a wonderful, caring doctor. He treated me until just last year. When he was shut down.

I’m lucky. I did find another doctor. It took about 3 weeks. It was Christmas time. Almost impossible.

I like this clinic. But I have to drive 80 miles round trip.

I’m 60. I’m not in good health. My husband passed away a few years ago.

My sweet little grandmother took her own life at 92. She was an amazing woman.

I hope I never have to do that.

But it’s in me. I could. I think of death every day.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org

January 11, 2018

An Open Letter to My Senator: CDC Has Killed Me

January 11, 2018/ Pat Anson

(Editor’s Note: Charles Malinowski is a 59-year old Paso Robles, California man who lives with Reflex Sympathetic Dystrophy (RSD), degenerative disc disease, ankylosing spondylitis, spinal stenosis and other chronic pain conditions. He recently wrote this open letter to U.S. Senator Kamala Harris (D-CA). We thought his letter worth sharing with PNN readers.)

Dear Senator Harris,

The CDC has killed me!

Let me repeat that: The CDC has killed me!

I have a severe neurological condition that causes me unspeakable and crippling pain. Pain medication is literally the only thing keeping me alive. But with the issuance of the CDC’s short sighted, so-called voluntary opioid prescribing guidelines -- which are being rammed down the throats of medical providers -- my pain management doctor has cut me off of opiates.

For the last 10 years, I have been subjected to nearly every type of physical therapy, medical treatment and medication applicable to my affliction. The one and only thing that has ever had any demonstrable benefit in even temporarily suppressing my pain to a tolerable level has, unfortunately, been opiates.

In early October, I was told that I would have to stop taking either the oral opiates or the intrathecal opiates, as it was now illegal for a person to receive two different types of opiates via two different delivery methods concurrently. This was a major problem, as even with both oral and intrathecal opiates, my pain was severely under-managed to the point where I was almost completely bedridden. I left the house only to go to doctor's appointments.

When I was told that my pain management regimen - specifically the opiates - was going to be cut in half, even though my pain was already grossly under-managed, I spoke out about this.

As a result, not only was I cut off from the oral opiates, I got kicked out of the pain management practice where I have been a patient for more than seven years. The doctor said he didn't want to risk his license - but was perfectly willing to risk my life - over the CDC opioid guidelines. These guidelines are supposed to be voluntary and are not supposed to take desperately needed pain medication away from legitimate chronic pain sufferers such as myself.

I expect that within 60 days, I will be dead from either heart failure or a stroke due to my body's inability to cope with the stress of the unrelenting pain. My neuropsychologist, who has been treating me for nearly 10 years, has consistently rated my level of pain as moderate to extreme, even while being medicated with both oral and intrathecal opiates, which I am now denied.

I'm not dead yet, but within 60 days I expect that the CDC will have effectively killed me. I honestly don't see myself being able to tolerate the pain any longer than that.

Congress, in going along with this blindly, will be explicitly complicit in this negligent homicide - or homicide by depraved indifference, take your pick - of one Charles James Malinowski, that being myself.

I would like to thank you, Senator, and all the rest of your colleagues for murdering me.

To help ease your conscience, it is not just me that Congress is complicit in murdering, but thousands, possibly tens of thousands of people in like positions.

Sincerely,

Charles Malinowski

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org

December 18, 2017

What’s the Difference Between Opiates and Opioids?

December 18, 2017/ Pat Anson

Rochelle Odell, Columnist

Like many of you, I use the words opioids and opiates interchangeably. I incorrectly thought one was singular and the other plural. It pays to look up definitions before using a word!

Merriam Webster defines opiate as “a drug containing or derived from opium and tending to induce sleep and alleviate pain.” The first known use of the word “opiate” was in the 15th century. Natural forms of opiates include morphine, codeine, heroin and opium.

Merriam Webster defines opioid as “possessing some properties characteristic of opiate narcotics but not derived from opium.” Interestingly, the first known use of the word “opioid” was not until the 1950’s. Two of the most widely prescribed pain medications, oxycodone and hydrocodone, are opioids.

Just Believe Recovery, an addiction treatment center in Florida, has a straightforward explanation of the difference between opiates and opioids on its website:

“Opiates are alkaloids derived from the opium poppy. Opium is a strong pain relieving medication, and a number of drugs are also made from this source.”

“Opioids are synthetic or partly-synthetic drugs that are manufactured to work in a similar way to opiates. Their active ingredients are made via chemical synthesis. Opioids may act like opiates when taken for pain because they have similar molecules.”

But neither opiates or opioids make pain go away – what they do is temporarily block pain signals.

"Both of these types of drugs alter the way that pain is perceived, as opposed to making the pain go away. They attach onto molecules that protrude from certain nerve cells in the brain called opioid receptors. Once they are attached, the nerve cells send messages to the brain that are not accurate measures of the severity of the pain that the body is experiencing. Thus the person who has taken the drug experiences less pain," is how Just Believe Recovery explains it.

The problem with this definition is that it fails to address why an addict uses heroin and other narcotics. It's not to relieve physical pain, it's for the euphoric effect or high. Big difference.

I can attest to that feeling. Years before I developed Complex Regional Pain Syndrome (CRPS), I was hit by a beginner snow skier, who caused a nasty spiral leg fracture. I screamed in pain for what seemed like hours, until a Demerol shot was given. It still hurt, a lot, I just didn't care that it hurt.

A week after the accident, I received a call from my orthopedist (who ultimately saved my left leg) informing me I must get to the hospital for immediate surgery. It turned out that my broken leg had not been reset and cast properly. A rod was inserted to correct the problem, but the post-op pain was excruciating.

I was on strong opioids for the next three weeks, until I had to go back to work and stopped cold turkey. I needed to work with a clear mind, and it was going to hurt whether I was at home or work. I had no cravings for pain medication and no addiction developed. Simply didn't need them.

However, after I developed CRPS and slowly titrated up on Dilaudid, the pain was different than it was from the broken leg. The relief obtained was not the "I don't care" reaction, but one of the pain is less, now I can do what needs to be done at work or at home. That’s the classic difference between acute, short term pain and chronic pain.

"When people use these medications only to treat pain as directed and for a short time, they are less likely to become addicted. Prescription drug addiction occurs when patients develop a tolerance for the level of medication they have been described and no longer get the same level of relief," is how Just Believe Recovery explains it.

"They may not have the same expectations for relief as their physicians and may equate the term ‘painkillers’ with the medication being able to take away all of their pain, while their doctor may be thinking in terms of pain management, which means bringing the pain to a level where they can function at a reasonable manner. When expectations do not match, patients may take more of the pain medication than prescribed to get a higher level of relief and in turn develop a drug addiction issue."

The CDC and several states have now decided to establish what acute pain is and how long it should be treated with opioids, be it three or five or seven days.

But if you suffer from a chronic pain disease or condition, a few days’ supply won’t cut it. You require the medication long term in order to function. Not addicted mind you, you just want the pain at bay. We all know pain medication does not “kill” the pain. It just becomes tolerable. Most pain patients do not increase their pain medication and many, including me, have been on stable doses of opioids for many years.

We also know pain patients are not the driving force in today's misguided opioid crisis or public health emergency or whatever you wish to call it. Illicit drug users are, and they are primarily young adults who snort, smoke or inject heroin and illicit fentanyl. Many are addicts who are in methadone clinics, and they still abuse not only the methadone but other drugs as well.

It's like everyone in power or who is affiliated with rehab has blinders on. Pain patients have become the issue, yet statistics clearly show we are not the problem. The rate for opioid abuse in pain patients is at or less than 5 percent. Why are patients singled out in this battle? Even the CDC admits opioid prescriptions are no longer the driving force in the overdose crisis. I believe they never were.

Opiates and opioids are not the same, and should be addressed separately. Instead, they have become interchangeable. We don’t have a heroin or opiate epidemic; we have an “opioid epidemic.” The government usually lumps them together as one. And, as we all know, what the government decides somehow becomes set in stone.

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

February 18, 2016

Patients Betrayed in Pain Management Debate

February 18, 2016/ Pat Anson

By Pat Akerberg, Columnist

I’ve often wondered whether the term “pain management” qualifies as an oxymoron. It’s no secret that the use of opiates for management of chronic pain is a treatment strategy currently under siege – sparking polarizing debate, government intervention, and pushback by legitimate pain patients.

This is my 7th year of dealing with the intractable pain of trigeminal neuralgia (TN) in spite of many failed pain management attempts. While interacting with hundreds of my counterparts, pleas are constant for alternative ways to effectively treat this notoriously painful disorder.

Not one of them relishes the potential of being dependent on any medications that they take to manage pain and rightly fear the long-term negative effects that some medications have on our bodies.

Others whose pain is tamped down to some extent with opiate medication are placed in an untenable Catch-22. They are surrounded by volatile uncertainty and shameful character judgments.

When leading neurological experts and research scientists I saw also shared their own frustrations about the lack of alternatives to or efficacy of most pain medications, my concern heightened.

Will I be left to needlessly suffer indefinitely while this controversy stalls solutions?

From my vantage point the pain management issue seems to involve at least four different issues:

1. Some abuse of opiates

2. Reactionary guidelines that further limit or curtail availability to legitimate patients

3. Multiple competing agendas thwarting progressive strides for pain management alternatives

4. Ethical imbalance placing profits, careers, and CYA (cover your ass) strategies over patient care

Unfortunately the current proposed CDC and FDA backed prescribing guidelines are an ill fated attempt to solve the first problem of opiate abuse (by some) by worsening a second problem for many legitimate patients already living severely hampered lives. This one-size-fits-all, closed regulatory approach upsets me (even though I’m not taking an opiate) because it excludes the input of those afflicted and prolongs suffering, adding more stressful setbacks to pain relief.

Ironically, the very agencies deemed to protect us from harm seem to be intent on a stance that inflicts it in varied ways.

Until we have acceptable options to abate pain (that don’t triangulate pain patients with their doctors/the medical system and the government) or put us at risk; we’ve been involuntarily forced into some part of this fight.

This issue has been turned into such an embattled political conflict that even patient advocacy groups (with something of their own to protect) seem to be sitting on the sidelines avoiding the crossfire. Patients have become sitting ducks while others who share a stake in the chronic pain pandemic still gain by our plight.

The third problem is about the forces that work against new research, medical institutions and companies stepping up the pace and availability of affordable new pain treatment alternatives.

Haven’t they positioned themselves as stakeholders with missions to cure or improve the impact of diseases, disorders, and health threats that result in chronic pain and other debilitating effects?

One of the many forces in play is that rare diseases (known as orphan diseases/disorders) don’t impact enough people to make it financially appealing for drug companies to come up with targeted, affordable medications or institutions to fund research.

As the lusty price-hiking grab of Big Pharma continues, insurance companies will keep upping their premiums and deductibles to protect their profit objectives. While for us affordability is our burden.

Yes, the fourth problem is all about return on investment and profits weighted against some deemed acceptable number of us who will die sooner or suffer longer while living.

If you suffer from an orphan disease (like TN) you’re likely taking some off-label medication that wasn’t intended to even address your issue.

The National Institute of Health could overcome that lag to progress by applying its’ considerable leverage. It could require that research grants be granted based on collaborative initiatives, findings be openly shared across science/medical institutions, and research dollars pooled, so that discoveries and treatment innovations are accelerated for a win-win.

Why isn’t any of that happening now? Political power and financial collusions, along with competition among stakeholders, are the short answers. There’s no political, financial, academic, career, or ethically motivated profit incentive for open, unbiased collaboration to occur.

As long as our disease centered (versus patient-centered), profit over patientmodel continues, collaboration is a direct threat to all special interests since they currently measure the success of their stake in advancing medical health by their own bottom lines, career progressions, and investor return.

Until they can otherwise be held accountable to exemplary medical and just ethical standards, there’s no incentive to coalesce and dedicate their collective resources to resolving the pain management needs of millions of pain sufferers.

It’s the medical/scientific version of our political underbelly, with pain patients involuntarily caught in its’ snare while progress sputters. The result is that effective pain management has been hijacked and diminished medically into a political football playing brinksmanship with the quality of our lives.

There’s so much wrong with how the whole “pain management” situation is evolving for us. The real blow in all of this for me is the realization that pain patients seem to be left with no representation or clout.

Without representation, I’m concerned that while we’re the ones least able to deal with it; we’ll be left holding the bag to gain more attention, commitment, and reform for real pain management answers.

I worry about precious time toward new alternatives wasted while the powerful lobby agendas, the government over reaches, our representation retreats, the AMA debates, and the profitable jockey to vindicate their approach.

Until then, it’s hard not to feel betrayed by the downward spiral in societal values, a slippery slope of collusion allowed to operate among some interests convincingly indifferent towards human suffering.

I really want to be proven wrong about pain management becoming an oxymoron.

Pat Akerberg suffers from trigeminal neuralgia, a rare facial pain disorder. Pat is a member of the TNA Facial Pain Association and serves as a moderator for their online support forum. She is also a supporter of the Trigeminal Neuralgia Research Foundation.

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