The Perils of being a Pain Patient – I’m Next

By Ann Marie Gaudon

I’ve always said if you have an infection that can actually be found or perhaps a tumour that can be cut out, you’ll likely be just fine. If you have a chronic syndrome however, you’ll likely be on your own – and screwed. I have been diagnosed with several syndromes over the years; I think I’ve lost count. Have I been misfortunate enough to suffer from many different diseases? I highly doubt it. I see each syndrome as actually a “symptom” of a whole-body disease that there is no test for, no diagnosis for, and certainly no treatment for. If you add into the mix that I am female, this all serves to give me a greater chance of a lack of validation, a lack of respect, and a lack of any real research that might help me and others just like me.

It’s been my experience that it’s very hard to find a doctor to take these symptoms seriously when you suffer from a syndrome(s). In all my years as a patient I was fortunate enough to find one – and now I’m losing her. You see the deal (at least in my head) was that I would be dead before she retired but now she is retiring and I’m not dead. The deal isn’t going through. I’m suffering from anticipatory grief already. From day one she believed me. She listened to me. She never interrupted me. She validated me. She did her best to treat all of my symptoms including pain. She is the consummate professional that I’ve relied on for many years. She is an authentic doctor through and through. And now she’s leaving and I’m left gutted.

I see this in my work as a therapist over and over again: folks in pain plus experiencing other symptoms who cannot get any validation for their suffering and quite often not even a diagnosis. Do I feel special or privileged that I had at least found one real doctor in over 30 years of pain and symptoms? At times I sure do. Then I take a look at the whole picture and feel that it is pathetic.

Most of us that at least had the good fortune to grow up healthy held this belief that if we were to get sick or become in pain that a doctor would be there to help us. If they couldn’t cure us they sure would do their best to make us feel better. Then we grow up, get sick and in pain and reality hits – like a sledgehammer to our head. When did doctors stop caring about their patients? Was there ever a time when across the board they truly did care? I’m losing my jewel of a doctor and reeling from the uncertainty to come. What will happen to me now?

I would love it if you would share your own experience and feelings on this situation. I am very interested in having this conversation with you. Your turn…

What’s Good For the Addicted Should Also Apply to Chronic Pain

Patty Hajdu, the Minister of Health, sent a letter to her provincial colleagues concerned about the increasing deaths of people suffering from addictions and using a poisoned street drug supply. Clearly, the government strategy to deal with overdoses and deaths by severely limiting prescriptions for opiate medications to chronic pain patients and others has not worked. Of course, most of us knew it would not work because substance abuse is not fuelled by those getting prescribed for pain. The research is crystal clear. Health Canada’s policy of prohibition did nothing for the overdose problem but, instead, added suffering to the lives of pain patients, demonized both them and their medicines, and stigmatized them to the point where doctors have abandoned them altogether. It has also increased the death toll. Instead of one crisis with one population, they have created two.

The minister’s new strategy as expressed in a letter to her colleagues is to make prescription grade opioids available to those addicted to protect them from the dangers of street drugs. We applaud any strategy that will help to keep patients safe and alive. However, how about keeping pain patients safe and alive? Where is there an announcement and strategy for this?

It should be quite evident to Health Canada that they have failed in their attempts to deal with the ever increasing overdose deaths and that they have simultaneously harmed pain patients to incalculable measures. In light of all of the harm that has been done, we are calling upon them to:

  • Make a public apology to pain patients. Why? Because when you have promoted gross distortions of the truth, and caused so much destruction and suffering, it’s the right thing to do. Health Canada must position itself on the side of evidence, and intentionally identify the overdose crisis is not the result of medically managed pain patients.
  • Rescind the 2017 guideline. We know this was not based on evidence or facts. There is no one size fits all. All pain treatment decisions including medication should be between physician and patient.
  • Health Canada must demand that all 13 regulatory colleges provide an achievable plan to immediately restore medical care to legacy patients and provide adequate care to new patients. Regulatory colleges must redeem the fundamental principle that every patient be treated as the unique individual they are, with their own unique and individual needs.

It is time to move forward and make things right by allowing doctors to practice sound, evidence-based medicine.

Health Canada’s Assault on Pain Patient Not Based on Valid Research

CPAC has just sent an open letter to the Minister of Health, Patty Hajdu, demanding that Canada retract its fraudulent reports and make responsible decisions based on real data. Research confirms that the overdose deaths in this country are overwhelmingly not a result of prescribed opiate medication. Rather, illicit drugs being used by those suffering from addictions are becoming increasingly more dangerous resulting in death. Prohibition of necessary medication and the attack on vulnerable pain patients must stop.

What we said was:

No more Mr. Nice Guy. For years, we’ve challenged Health Canada’s destructive pain policies. For years, Health Canada has replied with obfuscation, evasion, and outright lies. Now, the gloves are off. CPAC has written the federal health minister a no-holds-barred open letter exposing her department’s deceit and the awful harm it’s done. Here it is. Have a look; pass it on.

We’ve chosen our moment carefully. A peer-reviewed study and a related commentary in the Canadian Medical Association Journal this week shows that less than 2% of overdoses involve prescribed opioids. The evidence is now incontrovertible that Ottawa’s covert and underhanded campaign to prohibit essential opioids from pain therapy has only inflamed the overdose crisis and killed innocent Canadians. Health Canada has known — and suppressed — the truth for years, while systematically preventing Canadians in pain and their clinicians from weighing in on the policies that so egregiously affect them.

Health Canada has always treated CPAC and Canadians with pain as know-nothing naïfs. Will the minister now also ignore the acknowledged experts and researchers behind the CMAJ reports? We’ve told her we’ll be watching.

Here is an interview with the researcher who demonstrated that overdose deaths involve illicit drugs and not prescription drugs:

This is the letter and we encourage you to read it and to pass it on to others.

Dear Pain Doctor

By Ann Marie Gaudon

You know me by now; I’ve been in need of you for over 30 years. You know me by name and file number but honestly, I feel you don’t truly know me. By the time we met, I had already seen several specialists but to no avail. What they tell me is that my condition is not curable and as we have exhausted the treatments they have to offer, all I am left with is pain control. This is not how I saw my life playing out but hey, who does? I have something to tell you. I have learned so much over these decades and some of this I would like to share with you. I’ve come to find ways that are valuable, for myself and of course other chronic pain patients. Please hear my message to you.

When you told me “You’re just going to have to live with this,” it was not only unhelpful, but it was also terrifying. That one short sentence felt like a dismissal. What I heard was “I can’t do anything to help you so go away and deal with it.” I can’t even find the words to describe how hard it is to live like this and what I really need is for you to think outside of the box. Over the years out of sheer determination (and desperation) I have acquired many tools to help myself. I need you to tell me there are “actually many tools”, and you will help me collect them or point the way toward them. Help me create a plan including referrals to others both allopathic and alternative. I need hope in order to survive just like everyone else does.

When you told me “You’re not a typical patient,” that label has followed me until this day. Every doctor I’ve seen since you wrote this in my file has virtually written me off before even meeting me. I am seen as difficult, someone to be excluded, and someone that is not wanted as a patient. Labels are for jars, not for people. Chronic pain patients however, get labelled all the time and it’s stigmatizing and offensive. “Malingerers, drug-seekers, lazy, histrionic” – we get labelled with all types of negativity. You truly don’t know the harm you are doing when you label me so please; don’t judge me as a person and don’t judge my pain.

As much as you do not want to be interrupted when you are speaking, I do not want that either. Please let me speak. I have no desire to be defined as a number on a pain scale. Pain has not only invaded my biology but it has also invaded me emotionally as well as my relationships – both with others and with myself. It has affected how I see myself and the world around me. Surely you can make time for me? I struggle constantly with feeling like a burden and like my life has no value. As an antidote to this, what I need is to feel that I matter; that my life matters. I am the one trying to live a life within the confines of this body and I need you to respect that and to ask me questions about my challenges and my hopes and dreams. You can help me by being a better listener and being curious about my whole experience.

I really need you to directly acknowledge that my pain is real. You never took the time to explain to me how pain works in the body and mind and so I have been trying to put together the pieces with Dr. Google. I’ve been trying to give myself validation and that shouldn’t have to happen – ever. Most especially with being a woman, there have been times when it has been suggested that my pain is a consequence of my psychology. Do you have any idea of how insulting this is? You know as well as I do that women’s medicine has always taken quite a back seat to men’s and that women are mistreated and not believed far more than the male population. I needed you to explain how chronic pain can develop in the first place which in turn will give me that validation that I need. Please, just take the time to explore the pain system and to let me know that my pain is as real as anyone else’s. Help me to empower myself, not to feel as if the pain is somehow my fault or imaginary.

Finally, I need you to stick by me with compassion when I’m falling apart. I won’t always be pleasant depending on the severity of my symptoms and how my life is affected. Sometimes I will cry, at other times I will be so angry at the injustice of it all. My emotions will run the gamut: frightened, overwhelmed, lonely, or anxious to name a few. Chronic pain is partly an emotional experience and so my mood will be affected; it’s a given. Please don’t reach for your prescription pad to push antidepressants because I am having normal reactions when things get very tough for me. What I really need is support and kindness when I have fallen down. What you say and what you do can affect me along my journey. The journey can be formidable. Let your words and deeds be guided by compassion to let me know that I will get through this; I need your kindness at these times.

Thank you for reading this. I hope you find some nuggets of wisdom in here that you can utilize for all of your pain patients. We are a complex group to be sure. There is no such thing as “one-size-fits-all” for any population of patients let alone the diversity of injury and illness we bring to your office. We need your help now more than ever so please stay with us and empower us as we try our best to live within the confines of broken and sick bodies.

Do NSAIDs Really Work for Pain? Bias vs Objectivity

By Marvin Ross

Since the highly flawed CDC guideline on opioid prescribing was introduced, followed by the “copycat” Canadian guideline, pain patients have lost rational treatment for their pain. Each patient is an individual and should be treated as such by his/her physicians. What works for one person may not work for another and finding the best treatment is often a trial and error process involving switching treatment modalities and titrating dosages. Unfortunately, since the advent of these guidelines and the opposition to using opiates, newly diagnosed pain patients have been forced into predetermined boxes, or, if previously treated successfully with opiate medicine, forced to forgo that treatment.

Examples abound. I fractured a knee cap recently and was told by the ER doc to take NSAIDs. Before the flawed guideline, I would have been given a script for Tylenol 3, but she told me that it would cause constipation and stronger pain drugs would cause me to fall down. Constipation is a very manageable side effect and causing me to fall down would be quite remote. These were poor excuses not to prescribe; plain and simple. Fortunately for me I did have Tylenol 3 left over from a tooth extraction.
We also see reports of how NSAIDs are sufficient for post-surgical pain. The fine print of course, is that the surgeries these studies report on are often laparoscopic which typically involve minimal pain. Try an NSAID for post-surgical bypass where the sternum is cracked open and the incision is lengthy and see how that works out. How about a mastectomy without opiates for recovery?

The research being done is often biased and conducted by those who start out with an attitude that NSAIDs and other non-opioid prescribing are good medicine for all that ails you. A case in point is a study that appeared in the Journal of American Medical Association by Jason Busse, a chiropractor and editor of the Canadian guideline. Busse found that in 42 high quality studies of opiates versus placebo, opiates resulted in reduced pain. However, he then reports that moderate quality data from 9 random controlled trials found no difference between NSAIDs and opiate pain medicine. This was the message picked up by the media and we were all told that NSAIDs are equal to opiates despite the fact that the studies were not high quality – which he admitted in the report.
Stephen Nadeau, a neurologist at the VA Medical Center in Gainesville, Florida, told the Pain
News Network that: 

“Because the study designs in all but a handful of studies did not remotely emulate clinical practice, it cannot be inferred that the results of this analysis are applicable to management of the general population of patients requiring opioid management of moderate to severe chronic non-malignant pain.”

The Pain News Network expressed that opiate critics were quick to focus on the Busse study as proof that opiates should rarely be prescribed for pain. Recently, we see a new study that did not involve researchers with biases and has entirely different results. This report was prepared for The Agency for Healthcare Research and Quality (AHRQ) by the Pacific Northwest Evidence-based Practice Center (EPC) at Oregon Health & Science University using objective researchers. This new study concluded that evidence was:

 “too limited to draw conclusions” on long-term use of non-opioid drugs, and “no treatment achieved a large improvement in pain or function.” They also cautioned that “careful consideration of patient characteristics is needed in selecting non-opioid drug treatments” because of the risk of side effects. This evaluation involved 200 studies of which 25 were of good quality.

When it came to the medications used for neuropathic pain, their results were markedly different from the conclusions presented by the CDC. Neuropathic pain is often treated with the anti-epilepsy gabapentinoid class of drugs. The EPC researchers found that:

“Large increases in risk of adverse events were seen with pregabalin (Lyrica: blurred vision, cognitive effects, dizziness, peripheral edema, sedation, and weight gain), gabapentin (Neurontin: blurred vision, cognitive effects, sedation, weight gain), and also cannabis (nausea, dizziness)….Dose reductions reduced the risk of some adverse events with SNRI antidepressants. In the short term small increases in risk of major coronary events and moderate increases in serious gastrointestinal events (both short and long term) were found with NSAIDs.”

The takeaway message from this research is that pain patients deserve to be treated with whatever works for them at effective doses and not medications which are pre-determined by flawed reports and can have devastating side effects. One-size-does-not-fit-all yet prescribers are being forced into a situation where they offer not what their patients require, but what is dictated by the misguided agenda of the day.

Is Anybody Listening? The Failing Doctor/Patient Relationship: Part Two

Written by guest author Barry Ulmer

Physicians have been subjected to this campaign of official intimidation for years, but it has intensified over the past several years with the intentional efforts of a few anti-opiate crusaders who have effectively hijacked the whole area of pain medicine with debunked claims. Even more scurrilous there has developed an ethos of suspicion toward people in pain which now affects the patient/doctor relationship. Without so much as a peep from academic circles of medical ethics, the profession has adopted wholesale the imperatives that have been foisted upon it. This has led to a good number of physicians that will treat people with pain with an opiate to become more or less a compliance officer in a drug rehabilitation clinic, routinely forcing patients to perform random urine drug screens in order to prove they are worthy of receiving pain care. A significant number of patients don’t metabolize opiates as expected, a fact that isn’t widely known.

It is not unheard of for a physician to abruptly discontinue the use of opiates simply because he/she suspects “abuse”. If a patient’s family in any way objects to his or her use of the medication and just suspects the patient is addicted, many physicians will terminate care immediately, before incurring the wrath of their regulatory body. If a patient loses a prescription or has their pills stolen they are also likely out of luck of receiving any replacements. Many chronic pain patients are forced to sign what is euphemistically called a “pain contract” with their physician which gives the physician permission to terminate opiate treatment should any one of a litany of events occur. These “contracts” often have patients agreeing not to call him/her on weekends and skip visiting the local ER should they need more relief. If a patient is not happy with their care, they can attempt to find a new physician. However, then they become branded as a difficult patient, non-compliant or a malcontent and shut out of other practices that may prescribe opiates. With the standard of suspicion set firmly in place, the power relationship between doctor and the person in pain is tilted entirely on the side of the doctor. As a result the important patient/doctor relationship suffers even more.

To subject oneself to the ravages of modern pain practice is to put oneself at the mercy of people who are well versed in denying meaningful relief. Since the fall of 2016, when a group of anti-opiate crusaders obtained the ear of Health Canada, the field of pain medicine has been turned upside down. Much of this developed in secrecy to the exclusion of well qualified physicians who had years of experience in the field. It appears that every aspect of what is available now functions to profit off the suffering of the patient. Whereas medical management of pain is often the least expensive and most humane approach to serious intractable pain, the widespread denial of care functions to push out most vulnerable citizens into numerous surgeries, expensive poly-pharmaceutical regimens, tapering of medication, rounds of physical rehabilitation, repeated efforts at diagnosis, and interventional pain treatments that are exceedingly expensive and of little help to those suffering the disease of severe chronic pain. It would appear people with pain are slaves of the system, with many of those purporting to serve them profiting from their predictable

Is Anybody Listening? The Failing Doctor/Patient Relationship: Part One

Written by guest author Barry Ulmer

One of the most disturbing consequences of the unwarranted attack on the use of opiates and the least talked about in polite company, is the steady failure in patient/doctor relationships within the pain community that has taken place over the past few years. In third world countries where opiates are generally unavailable, physicians speak truthfully to their patients when they tell them they have nothing to relieve their pain. In countries like Canada, where opiate pain medications are ostensibly legal, but where physicians have been intimidated and coerced into withholding pain treatment, doctors feign ignorance or as a colleague says, “sheer impotence”.

There is certainly ample evidence that a great deal of pain relief is found in opiate medications and they are readily available in pharmacies. But, physicians in Canada are disciplined, sanctioned for periods of time, losing their right to prescribe, blackballed by colleagues and even in one case that I am aware of have the police show up on their doorstep to intimidate them. Many lose their licenses to practice and are destroyed financially simply for treating pain that is inconsistent with the opinions of regulatory bodies and other government agencies. If you ask the physician who refuses to treat pain with opiates if his/her fear of official attention is the reason of their failure to serve their patient, you are often met with something quite different than such a humble confession. Instead, you will hear about the addictive nature of opiates, or that their use should be confined for the care of the terminally ill when addiction is not a concern, or they simply will not work on your condition. Your physician will extol the virtues of the anti-inflammatory or psychiatric drugs. He or she will talk about the miracle of physiotherapy, biofeedback, acupuncture and the importance of a positive outlook on life in treating your pain.

These responses do have a place in the treatment of pain after the pain has been medically controlled. However, to recommend or proceed with them as if they replace the pain relief many receive from as opiate is like telling someone their house is burning and recommend throwing a glass of water on it to put the fire out, or making a diabetic exercise to earn their insulin. To a person in suicidal levels of pain, this kind of dissembling amounts to psychological and physical abuse. Yet this conversation between many physicians and patients is par for the course under the directions we are now in. It is a refrain patients hear over and over, until they stop searching for relief and give up living all together.

The fundamental truth that confronts anyone concerned with the quality of the doctor/patient relationship at present—namely, that most physicians have basically been turned against the interests of their patients—remains almost entirely unacknowledged by the profession as a whole. Resulting in a hodgepodge of an underworld of pain treatment—where there are still a few idealistic, caring physicians, and others who are taking advantage of what is perceived to be easy money—patients are essentially held captive in this system with their ability to function and provide for their families held hostage to the demands their physicians make on them in order to comply with what the physician believes is required by their regulatory body, provincial health departments and Health Canada (see the discredited 2017 pain guideline). It makes no difference that the demands might be utterly unreasonable, entirely degrading to the patient, or to the detriment of their health. The patient has no choice but to submit to the physician (see the results of forced tapering) or go to the street for medications—a prospect that brings with it even more onerous sanctions.
To be continued…

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