A Letter To My Doctor

The pain that I’ve experienced for the past month defies words. After decades of managing pain, I have never felt this extreme level of unrelenting pain unresponsive to any of the methodologies in my arsenal. As a result, I have experienced a traumatic response to this pain and am using active research to deal with this trauma positively. While there is no easy solution, I feel like the information that I’ve found in my research may be important for other patients, even if it’s just one.

I have been managing chronic and severe acute low back pain episodes since I was diagnosed with degenerative disc disease in my early 20s. Over the past 18 months, my pain has significantly increased with several intense and debilitating pain episodes that have left me unable to walk or function for up to a week. I have managed these on my own with the help and support of my family and by caring for myself using conservative and appropriate methodologies, including: physical therapy, doing my exercises both in the morning and evening; regular exercise; balanced dietary practices; intermittent chiropractic care, PEMF, acupuncture, and talk therapy; NSAIDs; ice/heat; Pilates, yoga, and qi gong; daily mindfulness and meditation (I’m doing many of the things that specialists and other interventionalists have recommended over the years).

While I can typically find relief through one of these modalities, nothing has worked to remedy the pain fully. As a result, I’ve experienced a lot of shame. Shame because none of these practices have eliminated the chronic pain. Shame because I felt like I was never doing these things quite right – that I was fundamentally flawed and was just not good enough at any of the practices to find true relief. A shame so deep-seated that I could not see it until this most recent experience. It lay veiled behind the illusion that I was incompetent. After all, this is how most people find relief and heal back pain. Statistically, these things should work (https://www.acpjournals.org/doi/10.7326/M16-2367).

So, what happens when they don’t?

I’ve begun to actively research why this is happening to me, to look at this back pain with clarity rather than with shame. Why did I have disc degeneration at such an early age? Why has it progressed to a herniation despite many years of active and daily interventions? And, why has the pain been so severe and persistent?

Context is everything.

First, there is a strong genetic component emerging in studies. One such study provided evidence that a “family history of operated lumbar disc herniation has a significant implication in lumbar degenerative disc disease” (https://pubmed.ncbi.nlm.nih.gov/9589542/). There may be a genetic factor in the development of lumbar disc herniation as an expression of disc degeneration.

• My mother had such a severe herniation that it required emergency surgery and a spinal fusion at my age.

• 3 of her siblings have had interventions for L5S1 herniations.

• 2 years ago, my brother needed intervention for an L5S1 herniation.

The research has identified “two collagen IX alleles associated with sciatica and lumbar disc herniation. In addition, disc degeneration has been shown to be related to an aggrecan gene polymorphism, a vitamin D receptor and matrix metalloproteinase-3 gene alleles.” (https://pubmed.ncbi.nlm.nih.gov/12014433/ & https://pubmed.ncbi.nlm.nih.gov/32346187/). No one has ever talked to me about this genetic research. I can see now that it is implied, although the empirical data makes it less speculative. This information would have been extremely valuable in how I approached this both logically and emotionally.

This condition is not my fault. It is not a consequence of my inability to do the right things, to seek the right types of help, to tend to myself in the right ways. There was perhaps nothing I could do to prevent ongoing pain and herniation. Perhaps, just perhaps I have been managing my pain in the very best ways possible and have been my own best advocate and not my own enemy who was unable to do things “right.”

The medical community has provided all the standard advice that should work. The aforementioned interventions are all supported by scientific evidence. Back pain is extremely common and most incidences of back pain resolve on their own (https://www.cdc.gov/acute-pain/low-back-pain/index.html):

• Between 60% and 80% of people will experience low back pain at some point their lives.

• In one study, it was the most common type of pain reported by patients, with 25% of U.S. adults reporting LBP in the prior 3 months.

• The American College of Physicians recommendations for noninvasive treatment of low back pain include all of the interventions that I have applied to my own self-care (https://www.acpjournals.org/doi/10.7326/M16-2367).

So, why do I have so much pain and others have no symptoms at all? Studies have shown that herniated discs often do not cause the patient any pain. In fact, there is poor correlation between the severity of symptoms and the extent of the disc herniation (https://www.spine-health.com/conditions/spine-anatomy/3-insights-patients-disc-problems). The severe and ongoing extent of my pain could be a result of the chemical component involved with DDD and herniations. In some patients with DDD, tearing of the annulus releases interlukin-6, a cytokine that produces inflammation. In addition, tearing and fissures of the disc initiate the ingrowth of blood vessels and nerves which contribute to pain (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5883634/).

Furthermore, research is showing that, in addition to the inflammatory response, there is also an immune response to the nucleus pulposus that is expelled during the herniation. “An immune cell known to cause chronic inflammation in autoimmune disorders has been identified as a possible culprit in low back pain associated with herniated discs, according to doctors at Duke University Medical Center” (https://www.sciencedaily.com/releases/2010/06/100629081632.htm). This internal part of the disc has been isolated from the immune system since embryonic development and when exposed to the immune system it causes an immune response in some patients, leading to intense and debilitation pain:

Given the evidence, why have providers failed to have meaningful conversations with me about my pain? While I can only speculate, here’s what the evidence points to. First, the incredibly high rate of medical treatment sought for low back pain. I am just a tiny drop in an ocean. Also, I have been doing all of the right things and there could either be the thought that there was nothing left to do (providers were just as much at a loss as I) or the assumption that I was exaggerating or being misleading (which has been implied).

Second, the entire system handicaps providers from spending meaningful time with their patients to both listen and educate. This is surely partially a result of insurance companies undue influence upon care and treatment or patients that usually does not benefit either medical providers or patients, although time still could have been taken to explore this with me. Learning about the research has been life-changing and had I known this I would have been able to approach it with much less shame.

Third, is the potential presumption that this is “drug-seeking” behavior. After all, back pain is frequently cited by drug seekers. Again, context is everything. No physician has directly discussed this with me, and I am making my own presumptions here, but it’s worth noting.

Fourth, as many studies have demonstrated, my demographic as a woman carries with it implicit bias.

“Researchers found that when male and female patients expressed the same amount of pain, observers viewed female patients' pain as less intense and more likely to benefit from psychotherapy versus medication as compared to men's pain, exposing a significant patient gender bias that could lead to disparities in treatments…"I think one critical piece of information that could be conveyed in medical curricula is that people, even those with medical training in other studies, have been found to have consistent demographic biases in how they assess the pain of male and female patients and that these biases impact treatment decisions," Losin remarked. "Critically, our results demonstrate that these gender biases are not necessarily accurate. Women are not necessarily more expressive than men, and thus their pain expression should not be discounted." (https://www.sciencedaily.com/releases/2021/04/210406164124.htm)

This research about gender bias has proven to be true in my experience. A prime example of how this has manifested is when I recently described my pain as a ten and extremely severe and the retort was, “Well, I had a man in here who said he was suicidal because of the pain.” This was probably completely unintentional, but comparing my pain to a man who said he was suicidal because of pain is unfair and an inaccurate way to assess my pain. I have every reason to live and will persist in spite of this.

I am both incredibly thankful to all the providers who have supported me over the years, and acutely aware of ways that patients such as me could be informed. This has been quite the journey. It has led me to some important revelations that can positively impact others who may find themselves in a similar situation.

Sincerely,

NM Kess