Preface: unless you are an MD with extensive experience treating chronic pain, do not comment with a diagnostic or treatment plan, or encourage me to do things like forego gluten or try transcendental meditation. If you do, so help me gods, I will organize a withering stream of DNS attacks on your site, and will sign you up for endless MLM email lists.
So I’m officially 6 months post-op, and while certain aspects of my physical health are improved, these have easily been the hardest months of my life.
It’s not all for naught: I honestly feel like part of my life purpose is to do something about the suffering in the world- and in this case, the grief so many people with chronic and unresolved injuries/pain deal with. Over the past 4 years, I’ve had patches that started as a day “out of commission” here and there that have grown into multi-week stints barely able to get out of bed. It’s not that I’m sleepy: it’s that any movement at all seems to make everything worse. Doctors doubt, or postulate hysteria, much like they did 100 years ago. And while I’m certain my anxiety is to the detriment of my physical health, there is definitely something physical going on. I’ve been a very game patient, trying any number of cocktails designed to massage the worried mind; none have had any effect on the pain, but they do a real number on my sleep and general quality of life.
But this is not a post about woe is me. Just establishing what the baseline is, in preparation for what is to follow. A baseline week looks like teaching as much as I can and then complete rest to give myself a fighting chance at repeating it the next week. My productivity is very low: multiple books-in-progress neglected, edifying physical activities out of the question, social calendars kept to a minimum. It is not an exaggeration to say that I spend, on a “rest” day, 6-12 of the waking hours prone, uncomfortable, and in pain so distracting that there is no diversion that could make the time pleasurable. It is not just a back pain, but numbness and tingling down my spine and legs, into both feet. It is a headache that resists medication, and lines of pain like hot pokers through my knees and into my hands. It is a left hip that burns at rest and seethes with rage at a flight of stairs or too long spent in the car. Exercise and stretching provoke all of it further, but I do persist with it a bit so I don’t seize up entirely. I long for orchestra practice, playing terrible hockey with my tolerant friends, and hiking along Rock Creek.
I post beautiful pictures to Instagram not to portray an idealized life, but to remind myself at a later time that yes, I was outside. Yes, I have brilliant students. Yes, life goes on, even as it seems to close in around me. Other chronic pain people will recognize this all too well. It’s not an exaggeration to say that this feels sometimes like a very long death—a slouch into infirmity, away from the things I used to do, a life I used to recognize. But I am resolved to die only once, and to live as best I can in the meantime. I give myself lots of pep talks. I goad myself back to having a more reasonable perspective.
A few weeks ago, I was looking for scholarly studies of people with localized pain that mimics certain syndromes who seem to have normal lab and imaging results, and came upon something I hadn’t heard of before: magnetic resonance neurography. It’s an MRI that’s been calibrated to see nerves. It’s been available since the 1990s, yet this is the first time I’d heard of it. The numbers are impressive: in early studies, of patients who presented (for instance) with sciatica pain but whose X-rays and MRIs were negative, 70% were shown to have sciatic nerve impingement or other clinically significant physical issue upon reviewing images generated under neurography. Even if I’m not so fortunate, it seemed a promising avenue to explore.
I spoke to Dr. Brown, who said something to the effect of “Oh Christ, how had you never had one of these done before?”
On Sunday, that changes. It may all come back normal, but my instinct is that they’ll see something in my cervical or thoracic spine.
I’m also going to see (warning: lady stuff ahead) a pelvic floor specialist, because many women who have persistent hip and upper back pain have weak and hyper-tense muscles in the pelvic floor. The muscles of the lower abdomen and hip do so much work to support the body that long-term problems there can cause all kinds of seemingly unrelated issues of alignment and misuse. My sense is that the underlying issues are some combination of these two. And as for the Thoracic Outlet Syndrome? I absolutely have/had it. It may be a symptom of a phenomenon that is larger still, or it may exist on its own. This is what happens when medical care is expensive and women are not believed: decades of pain and misdirection aimed at cost-cutting and ignoring complex pain.
Enough, I say. This year, I’m finding answers, and maybe my candor will help someone else find help, too. I will absolutely keep you posted, and if you’re reading this and have questions too personal to ask in the comments, you can always email me. Contact (at) emilywright (dot) net.