My Journey with Pain

I would like to begin by expressing my gratitude to everyone on this task force for their time, expertise and their invaluable work. Also, I would like to thank the many medical professionals who dedicate their work, and often the better part of their lives, to alleviating the suffering of those living with chronic pain. I have been trying to write this submission for several weeks. I am indecisive about which details to include and which to forego. There are many. Please consider the cumulative effect of all the details I have mentioned here and the many that still line my heart. I have experienced chronic pain for over 25 years and had intermittent pain since adolescence. The problem is the interconnection between the physical, psychological, sociological and spiritual pain. I have had them all. I still do. That said, I also realize I am more privileged than many in our society. I have a secure source of income through my spouse. I live in a small centre with clean water and land that has not been poisoned with mercury. It is close to a major city with many medical services. I am not impacted by racism or homophobia. The thought of a life of chronic pain, while living with any of these intersectionalities, is humbling. Nonetheless, living with chronic pain, and its corollary, chronic exhaustion has had a major impact on my life.

Here is my journey with pain. I am a 61-year old woman. I have mental illness in my immediate family and grew up experiencing uncertainty and trauma. It got worse in adolescence. Physically, I experienced patella subluxation, which turned into a chronic issue resulting in chronic pain and swelling in my knees. I also started experiencing migraine headaches. I married early and had two boys. I left the marriage in my late twenties because of abuse. I struggled to keep my sons safe for the better part of their childhood and adolescence. I went through two years of kidney infections and anomalous problems. I began having allergic reactions to prescription drugs. I went to university at 30 and at the end of my undergraduate degree, four years later, I became ill. Later that year I was diagnosed with Systemic Lupus Erythematosus (SLE). I had joint pain and often swelling in my hands, knees and feet, weekly migraine headaches lasting multiple days, Raynaud’s phenomenon, chronic anemia, and exhaustion. Mentally, I struggled with depression, anxiety, and increased panic attacks. To me, all of these symptoms contribute to different forms of pain. I had some good days, more bad days, and weeks where I would feel flu-like symptoms with pain throughout my body.

I wanted to continue my education in graduate school, but the uncertainty of my health prevented me. I was not able to sustain full-time work and found it difficult to even work part-time because of the unpredictability of my symptoms. When I did work part-time, I was underemployed and often had to work on days when I had a lot of pain. This work would compromise most of my quality of life outside of work; so consequently, paid employment, for me, has been limited. Socialization became limited. It was difficult to maintain friendships.

Things went along about the same way for almost fifteen years. I had two very compassionate family physicians (both retired early due to stress), and my two rheumatologists were kind. The anti-malarial drug seemed to keep organ problems in check. The rest of the problems were not helped. I was given Tylenol 3 at times, and I was prescribed various SSRIs with horrible results. MAO Inhibitors and tricyclics all made the headaches unbearable. Cortisone shots worked for very short times. I tried as many alternative treatments as I could, but most were beyond me economically (especially long term). Many of these treatments were helpful, although the results were temporary. I was not offered anything other than prescription medications from physicians.

To keep myself sane, I read as much as I could tolerate (with headaches) in a variety of fields, I especially researched medical issues that affected my family. I started looking at research that linked abuse and trauma with chronic illness and pain. I helped others where I could. This gave me purpose. I went for walks when I was able, sometimes danced. In order to be active, I took pain killers and “pushed through”. This always came at a high cost, but I came to accept the trade-off. I began to realize that freedom came in moments. I began to pursue yoga, meditation and mindfulness, and found great help in these practices.

About 15 years after I was first diagnosed, I tried to pursue a graduate degree online but was capsized by pain and exhaustion. It just happened that at that time, I was given an appointment with a psychiatrist who specialized in Chronic Fatigue Syndrome and Fibromyalgia after a two-year wait. She said I met the diagnostic criteria for both these disorders. She also did a psychiatric assessment. When she discovered that much of my time was spent caring for my family, especially my son and sister (both who had substantial mental health disorders that required my daily attention), she was dismayed. She told me I must distance from them to preserve my health. I believed this would increase my stress. They are my loved ones. This standoff was impossible for me.

I joined an education group she facilitated. She helped us to chart pain, exhaustion, sleep and food. I learned a lot from her. She put me on a migraine protocol for six weeks, which I followed to the letter. It made me worse. When I saw her again, she apologized and told me not to try protocols or prescription medications for longer than two weeks, if my symptoms worsened. I heeded this advice.

My rheumatologist started me on low-dose prednisone to deal with the increased pain and exhaustion. It helped a little for about a year. I was now entering my fifties and started experiencing back pain radiating into my hip and leg. After initial x-rays, I was given cortisone injections in my facet joints with no relief. I also had surgery to redact my left thumb joint because of extensive pain. I started having significant flushing from cortisone. My right toes started to deform, and I began having more extensive pain in the joints of my feet. My mouth and eyes became progressively drier and my eyes stung. I was diagnosed with Sjogren’s disease. I had two ulcers. I still had swelling and pain in my knees everyday. The back pain got much worse. My world got smaller and I lost most of the few friends I had because they could not relate to my life challenges and were unable to offer any reciprocal support or compassion. I had to give up yoga completely. My physician started me on low dose Tramacet and morphine. It was helpful.

An MRI was requisitioned for my spine because the pain was insistent and increasing. I had almost a year wait. My rheumatologist explained that the results showed that I had severe stenosis in my lumbar region and scoliosis. She said I needed surgery. She referred me to a spine clinic where most of the spine and neurosurgeons have their practice. It was a seven month wait to get an appointment. A triage physician showed me my MRI and explained (again) that surgery was the only option. It was a two year wait to see the surgeon. I had difficulty walking any distance and after a bout of shingles, could hardly walk at all from the severe neuropathy. My shoulders became very painful and it was difficult to sleep. A shoulder ultrasound showed tendon tears, tendinosis, bursitis and inflammation.

When I finally saw the surgeon, she told me that I would need extensive surgery, which would include two rods, a lot of anchoring hardware and spinal fusing from S1 to the mid thoracic. Besides the stenosis and scoliosis, my back also had flattened, and I would need the curve reconstructed. She wanted to test my bone density before she booked surgery. I had the test and it was three months before I found out that I had some osteoporosis and could not have surgery. In order to ensure my back would not break during surgery, I needed teriparatide injections to increase my bone density. I needed to be on this medication for a year before surgery. She sent me to an endocrinologist. This was a four month wait. He seemed to have a problem with my surgeon and told me he would not prescribe this for me because it was unnecessary. During the appointment, he told me he was not in possession of the complete bone mineral density report. He advised that I get a second surgical opinion. I asked him how I would do that, when I had already waited over three years to get this far. He did not answer me.

When I saw my surgeon again, she said she had presented my case to her colleagues in the clinic. No one would operate with my bone density. The cost of teriparatide is just over $1000/month. She was going to try to find funding for me. I waited four months with nothing. Miraculously, my husband got a new position and his benefit plan covered the medication. I was booked for two surgeries (the procedure was too long to be done all at one time) ten months after beginning the injections.

One month before the surgery I had a hemarthrosis in my right knee. I could not walk, and my knee was drained in ER. The ER doctor referred me to next knee and hip clinic for possible scope. I had already been placed on a waiting list for knee replacement surgery. Knee surgeon did not scope because of approaching spine surgery. I was told that hopefully I would have knee surgery within the year. I finally had the spine surgeries almost ten months ago. I believe my surgeon and her team did a superior job. There is a two-year healing period. On the upside, I can walk again! On the downside, I still have neuropathic pain in my legs that may never leave, shoulder damage that has worsened and so has the associated pain, have chronic stomach pain since surgery, and my knees (especially right one) are so painful that they are hampering my gait and my recovery.

I saw a knee surgeon about six weeks ago, and apparently, I was not triaged properly. I have a rare form of knee arthritis and was born without trochlear groove (hence, childhood patellar subluxations). I was told there are only a few surgeons in this city who can perform this surgery. The surgeon assured me he would find a surgeon for me and call me back within a week. Over a month has passed, and I have not heard anything, and now we are in COVID19 land.

My heart goes out to the people who have and will lose people in this pandemic. I am cognizant that I could be one of those people severely impacted. The isolation is nothing new for me. I am an expert. However, when I hear all the discussion about the difficulties of isolating, I am reminded of the invisibility I have endured for most of the last 25 years.

Before I close, I would like to talk about the most disappointing medical treatment I experienced. These events began in late 2017. While I was waiting for an appointment with the spine surgeon to hear about the bone mineral density scan, I was referred to the psychiatrist with a specialty in pain, pain transition and opioid tapering, who was part of the clinic. I first met him in a group setting, where he presented a brief explanation about the risks of opioid use. Research shows a worse post-surgical outcome with opioid use before surgery. Opioids were helping me to tolerate the pain and to have the capacity to walk. My physician had just retired, and I could not find a new physician who would take me because of the opioids. So, believing I was to have surgery within a couple of months, I titrated down quickly and stopped taking them, completely. My pain shot up…a lot. About a month after the presentation, I saw the psychiatrist for an individual session. I had to fill out a booklet of forms before the appointment – every trauma and pain graded numerically. He was very excited that I had stopped the opioid painkillers. We talked briefly about my life thus far. He commended my meditation and mindfulness practice, and my knowledge of natural pain relief; but, he never commented or asked about most of the issues and trauma I was asked to detail in the forms (some of which presented a retraumatizing experience.) Then he asked me a curious question, “How do you know you will have surgery?” This shocked me. I told him I had been told by my rheumatologist and, the triaging physician and the spinal surgeon of the clinic we were in. I immediately felt like he didn’t believe me. He was starting an Acceptance and Commitment Therapy (ACT) group and he wanted me to be part of it. I agreed.

The group started a couple of weeks later and would run weekly for about six weeks total. The group was facilitated by two psychiatrists (one being the above mentioned) and a physiotherapist. In the first meeting we all got a minute to introduce ourselves. The psychiatrists assured us that this group would be non-hierarchical, and we were to call them by their first names. Most of the participants had not experienced chronic pain for as many years as I had, and most of them were not waiting for surgery. Many of them were working.

The first group meeting happened to be the day after I found out about my bone mineral density scan results. I was very upset especially because I had waited three months just to get this news. My rheumatologist called me, a day before I was to meet with the surgeon, to say she had just been informed of the results. This made it obvious that the surgeon had not reviewed the results until the day before my appointment. The surgeon had recommended going back on opioid painkillers. I had an appointment with the psychiatrist in between the first two sessions of the group. I told him that I was no longer a candidate for surgery. He responded by saying that he knew that I was wrong about needing surgery. Again, I was shocked and explained the situation. I still required surgery but would have to take a bone building medication for a year. Then I told him I was angry with all the waiting and not having the results and referral to the endocrinologist relayed to me sooner, possibly by phone. He soundly reprimanded me, stating that doctors were very busy and did not have time to review results until they saw patients. I was effectively silenced and no longer felt any safety with this doctor. He put me on a buprenorphine patch, which subsequently caused an allergic reaction. I was then given Belbuca (buprenorphine film). He always faxed in the prescription (I guess I was not to be trusted). He always gave me the exact amount until my next appointment. One time he miscalculated, and I was without painkiller for a day. I was on the second lowest dosage available.

I continued with the ACT group. By the second meeting, the psychiatrists were calling each other “Dr.” again; the hierarchy was back. The participants were not given time to introduce ourselves again, so it took a while for us to learn each other’s names. There was some useful information about anxiety, meditation and mindfulness, but in all honesty, I learned very little. Most of the information seemed new to the other participants. We were told that the Biopsychosocial-spiritual model was the blueprint for the group. One of the main points that was talked about numerous times was that chronic pain caused us to catastrophize our situations. In fact, at one point, the psychiatrist said we shouldn’t be asked how we are because it leads to catastrophizing. There was no discussion about compassion, either towards oneself or to others. In one group, the topic was victimization. The other psychiatrist began by asking if any of us had ever identified as a victim. A couple of us raised our hands (women). She asked how we had changed that aspect of our identity. One woman responded by saying that it was a cognitive change. I responded by saying that it was a process, and it still informed part of my identity and my compassion towards others. Then I said that much victimization comes from systemic oppression within society. This psychiatrist then went on to tell a room of white people how her dealings with a certain cultural group (which she named) exposed most of them as having “victim entitlement”. She continued to explain this concept with a repulsive lack of awareness and privilege. This made me sick. I did not want to return to this group but felt that this might threaten the care I received. Again, I was silenced. I saw very little of the Biopsychosocial-spiritual model. I can honestly say I am worse off for this group experience.

I found a family physician, and after the group sessions were completed, I was allowed to get my buprenorphine from my family physician. This went well except for one time. My physician was away around Christmas and I had to get a refill from my physician’s colleague in my local family medicine clinic, which she had instructed me to do. The relief doctor became very angry with me, [that] “I would walk in there and expect to get a refill.” I explained the reasons that I was on this medication. He made me sit in the waiting room while he decided if he would refill it. Then he made me make an appointment for my doctor in front of him, he calculated the medication I would need until that appointment and reluctantly gave me a prescription. This was done in front of a full waiting room. I vowed that I would never go through this humiliation again. When I next saw the psychiatrist at the spine clinic, I told him about this experience because he is the lead in teaching other doctors about opioid protocol in my province. His response was a terse and seemingly uncaring, “that’s not cool”.

In closing I would like to offer some suggestions from my experiences. While I understand that some of these are already outlined in, “Chronic Pain: Laying a Foundation for Action”, I believe there is merit in reiterating these points.

• Chronic pain is always life changing. Obviously, this is dependent on the individual circumstance, but I cannot think of an instance when, at least at first, one’s world does not get smaller. Hopes, dreams, and short and long term goals are lost or significantly changed. One loses friends and even loved ones because of diminished capacity and the stigma of being “sick” in our societal norm of “being positive”. Frequently, comments the individual with chronic pain makes about daily difficulties are met with either disbelief or minimization. Those with chronic pain are often told (well-meaningly), “But, you look good!” Those with chronic pain learn to silence themselves, often doubt themselves and generally lose a great deal of authenticity, while covering their suffering with a cheerful smile. Perhaps catastrophization is the appropriate response, at least for a while. Timely universal access to appropriate mental health professionals and ongoing therapies is critical. Psychological pain and stress can have a causal effect on chronic pain, and the reverse is also true.
  I would like to suggest that individual or group therapy should comprise validation, grief work and ritual. It may be that cognitive therapies would be more helpful after the individual developed more self-compassion and acceptance through the above modalities. Family members need education about chronic pain and concrete strategies on how to help. This may need to be ongoing.
• People living with chronic pain need to be believed by the medical profession. Doctors, specifically, need to understand power imbalances and the numerous deleterious effects that result from top-down medicine. Individuals with lived-experience have knowledge, and often deep wisdom, about living with chronic pain (physical, psychological and spiritual pain).
• Medicine and its associated disciplines should require, at the minimum, one sociological course that discusses the impact of social and economic inequities on health, especially chronic illnesses and pain. The intersectionality of oppressions should be taught along with a history of the systemic effects of colonization, in Canada, from an Indigenous perspective. An understanding of the layered privilege afforded to medical professionals should also be part of medical training. Even though I have outlined details of specific doctors, this is not about shaming anyone individually. It is about addressing the supremacy of the current medical model. Guest lectures from patients might offer some perspective on the humility and respect that professionals must learn before beginning to practice in this field. Nothing will change if we don’t start there.
• Pharmacare should be implemented immediately in Canada. Subsidies for alternative and natural treatments should be available for people living with chronic pain. There should be more research on the potential benefits of various medicines in the psychedelic category.
• Everyone is aware that wait times for specialists and surgeries are far too long in our system. However, in my experience, there is no recognition for the toll this takes on people who are living with chronic pain. In relating my experience above, I have bolded wait times to highlight that I waited for the better part of a decade (from the onset of pain) to have the necessary surgery.
• The opioid dilemma is complex. There is ample evidence that the over-prescribing of opioids, especially oxycontin, has led to dependence and death. This tragedy cannot be overstated. However, dependence is not addiction. People living with chronic pain often lose a sense of belonging and purpose. Many people who have chronic pain have suffered psychological trauma. I believe these factors are even more important in the genesis of addiction than the availability of opioids. There is research based evidence to back this claim. Many people living with chronic pain need some amount and duration of opioid painkiller to have any quality of life. Some may need it for life. The removal of this therapy from individuals against their will is shameful. Doctors should not be allowed to refuse patients because they are using opioids prescribed to them by other doctors.
• We need understanding and community. We all do, now more than ever. I am deeply appreciative for the kindness and caring I have received from some individuals in the medical community throughout this journey. I wish for more of this for all of us.