Chronic pain can strike anyone. I never imagined myself as a person who would visit not one, but two pain clinics and have two surgeons on speed dial. The seven-year anniversary of the bike accident that started this all is in a week. Over the years, I have had six chest wall surgeries to repair extensive damage to my rib cage, along with numerous other procedures meant to curtail the incessant rib and abdominal pain. All of this from a faulty water bottle hand-off during a triathlon.
I am an Olympian and World Champion who raced triathlon professionally for twelve years. I spent years training hours upon hours, pushing myself to unimaginable limits, finishing races nearly passed out from dizziness or wheezing from asthma. It never occurred to me there would be days and weeks and years where none of that would be possible.
The chronic pain roller coaster
Here’s the thing with chronic pain, or at least my chronic pain — it can be a violent roller coaster where sometimes the pain is only a slight background noise, just a little annoyance to let you know that things aren’t perfect. But, sometimes, the pain mutates into a horrific entity that seemingly has no boundaries, defying the laws of the 10-point pain-scale commonly seen at the doctor’s office.
When the pain is at its worst, my life becomes a succession of damage control with visits to doctors for pain management, and figuring out how to accomplish the tasks of work and daily living. I like to think I have a high tolerance for pain and that with enough mental fortitude, I can overcome anything. And, then, the mutated pain attacks, and I realize that even the strongest minds with the highest amount of desire cannot overcome everything.
Eight weeks ago, the mutated pain arrived as a new form of torture, because this time, not only did the pain reside in my right ribs, but it brought with it intense abdominal spasms whose frequency and intensity made the ones in the past pale in comparison. Added to this concoction of symptoms was nausea, back pain, and shortness of breath, a veritable recipe for misery.
For the first five weeks, I wandered around in a fog wondering how the heck I could feel this bad. Finally, I made an appointment with my surgeon who referred me to a new pain specialist.
The new pain specialist confirmed a previous diagnosis: intercostal neuralgia (IN) with a nerve entrapment. IN is essentially damage to the nerves that run between the ribs and can affect one or several levels; my damage is to ribs 5-12.
Since the anatomical defects have all been surgically corrected, it is now evident that the IN is separate from the rib fractures. What I did not fully understand in the past, and what this new doctor explained, is that the reason the IN symptoms keep coming back, as it has time and again since my accident, is because the natural history of this syndrome dictates that it will return. The only real surprise about the pain returning is that it surprised me.
I did not appreciate that the treatments (e.g. nerve blocks, local cortisone injections, ablations, pain medicine) would help the pain until the treatment wore off, at which time, another round of treatment is needed. I have been on this pain-treatment-pain cycle for 7 years, but, each time I had a treatment, there was an expectation of “recovery” which never happened. Therefore, there was always an element of disappointment and confusion when the pain inevitably returned. At least now, I have a better understanding of the future, and I have a pain specialist with an arsenal of ways to attack my IN. Just yesterday, I had a thermal ablation of the nerves at ribs 9-12. I liken this procedure to Byzantine torture, but, it should offer relatively long term relief without needing the horrible pharmaceuticals that rarely work and have tenacious side effects.
If you have chronic pain, don’t despair, you are not alone
I relay my story for one reason, and one reason only, and that is to help people with chronic pain understand that they are not alone. While my condition is rare, chronic pain is not. More than 25 million adults in the US have chronic pain. The industry built around chronic pain is vast, as evidenced by the opioid abuse epidemic that has recently captured the nation’s attention. This massive pain industry is often ineffectual, with pain sufferers dealing with depression, anxiety, and hopelessness in addition to their pain. More often than not, the mechanism for helping the pain is chasing the symptoms rather than fixing the underlying problem, because much of the time, that is the only course of action.
There are many faces of chronic pain, and mine is just one. There is no stereotypical chronic pain patient, you cannot pick us out in a crowd.
Unless you look deep into my eyes, my pain is invisible to anyone who looks at me. I can still work, run, even go out to dinner or meet friends for a drink. Oftentimes, though, I have to force myself to do so, willing the pain to not overtake my life.
I have learned, over the years, that there are ways to make things better, or at the very least, make things easier to handle. The first and foremost action item is understanding why the pain is occurring and what can be expected over time. For some chronic pain sufferers, the etiology of their pain may never be solved, but never stop looking. Secondly, assembling a team of experts who are in your corner is imperative. If you are not satisfied with your healthcare team, look elsewhere. You are your best advocate when it comes to navigating the health-care system, so don’t take no for an answer. Thirdly, with chronic pain, movement of some kind generally helps. Even on my very worst days, I rouse myself off the couch and go for a walk. A bout of sunshine, especially with my exuberant dog at my side, does wonders for my mental health.
Finally, a “woe is me” attitude is never helpful. Sure, it’s ok to cry, or vent, or even have the occasional tirade. But, the overall basis of one’s being should be optimism. Optimism breeds opportunity and while the chronic pain may never truly go away, the opportunity lies in having better days which might morph into better weeks.