Regular readers will know that I’m generally optimistic, happy even, despite the rare autoimmune and neuro-inflammatory disease with which I’ve been struggling for the past few years.
My focus tends to be on what I can do, more than on what I can’t; not just for this disease, but for life in general. That’s always been particularly true of my career. My focus would be on the things I could do, the improvements I could make – or help make.
Sure, I’d sometimes get frustrated; everyone does! Things like office politics, a lack of resources or time, or project constraints can cause problems for anyone. But dwelling on the things we can’t change is counterproductive… a waste of time and energy.
So when this pesky illness started causing excruciating pain, to the point where I’d throw up or faint (yes, from pain!), I decided that I’d just tough it out until my doctors could find an effective treatment. The same way I’d deal often with issues at work; head on.
Even though I’d vomit from pain – very inconspicuously! – most days at the office, it was important to me to keep working towards my career goals and my life plan. So I did, with one exception. I’d hoped to apply for a doctoral program when I turned 50, to finally get the doctorate that I’d dreamed of since I was a little girl. My Scottish grandma was a firm believer in the value of education, and she was the catalyst for my “Ph-Dream” ‘-)
My field is bioethics, so I had been looking into PhD programs in Philosophy. I would specialize in biomedical ethics, and find a university offering a part-time program so that I could continue to work full-time. That combination, of full-time work and part-time education, is how I completed my university certificate in management, and then both my bachelor’s and master’s degrees. Let’s say that I’ve had lots of practice balancing career and school deadlines!
After being diagnosed with Complex Regional Pain Syndrome (CRPS, also called Reflex Sympathetic Dystrophy or RSD), I put that dream temporarily on hold. It was difficult enough to get through each day at work, to fight through the disease pain and other symptoms.
Some days I’d be short with my colleagues, impatient. When I’d be in a meeting and feel a particularly bad pain flare starting, I’d sometimes cut people off as they were talking; to try to rush through the meeting so that I could go throw up – outside the meeting room!
It was a bizarre point of pride for me, that no one saw me vomit at the office. I fainted a few times, from pain, but that was more difficult for me to hide. During all this time, I was convinced that it was just a matter of time until my doctors would find a way to get my symptoms under control.
Once that was done, I’d choose a doctoral program – and then discuss my “Ph-Dream” plan with my boss. But we never did get the pain under control. And then, towards the end of last year, new symptoms appeared.
Difficulties with concentration, focus, short-term memory. And problems with language. I’d want to say or write “an element of” but I’d instead end up with “an elephant of”… but I’d be certain that I’d used the word “element”.
Last week, I forgot how to write the word “recommend”. I’ve used it at least every week for the past 20 years, but I had to Google search the word to find out how to spell it ‘-( I’ve been told by my doctors that this is MCI; mild cognitive impairment.
Apparently a subset of patients with chronic long-term CRPS are affected by MCI; this was completely unexpected to me. When I searched for research on MCI in CRPS, to try to find out what could cause these new symptoms, I found a few medical journal articles that really surprised me. These research articles pointed to specific changes in the brains of patients with CRPS.
This one, from 2015, compared two specific prefrontal cortex (brain) structures in healthy controls (HCs) and CRPS patients:
CRPS patients made more perseveration errors on the Wisconsin Card Sorting Test and had longer stop-signal task reaction times than HCs.
Although the Beck Depression Inventory and the Beck Anxiety Inventory differ significantly between the groups, they were not correlated with cortical thickness.
Our study suggests that the pathophysiology of CRPS may be related to reduced cortical thickness in the dorsolateral prefrontal cortex and the ventromedial prefrontal cortex.
The structural alterations in dorsolateral prefrontal cortex may explain executive dysfunction and disinhibited pain perception in CRPS”(1).
An earlier article, from 2013, had looked at additional areas of the brains of CRPS patients:
gray matter volume and white matter anisotrophy was determined in CRPS patients and healthy subjects.
Results indicate gray matter atrophy in the insula, ventromedial prefrontal cortex and nucleus accumbens.
The white matter anisotrophy of the cingulumcalosum bundle was decreased.
Further, the strength of connectivity between atrophied regions related to anxiety, suggesting that abnormal anatomy of the CRPS brain may be at play in autonomic and cognitive symptoms in CRPS.”(2)
Up to that point, to when these new symptoms appeared, I’d always believed that my university-hospital pain management unit (PMU) and I would eventually get my CRPS symptoms under control. Reading these research articles – which took a while because I’m having difficulties with concentration! – was heart-breaking. There’s no treatment for MCI in CRPS. I just have to hope that it goes away…
My usual optimism took a hit, temporarily. But there was a type of surgery that might improve the CRPS symptoms enough to get rid of the MCI. So I pinned all my hopes on that. In the meantime I went on short-term medical leave from my career, because the MCI made it impossible for me to work; I was starting to make mistakes. I’d say things in my presentations and written work that didn’t make any sense, like using the word elephant instead of element.
Or I’d chair a meeting, and take note of what I needed to do; what had been agreed during the meeting. And by the time I got back to my desk, literally moments later, I’d have forgotten what my notes meant. Bear in mind that my background, my passion, is philosophy. Logic, rational thought, reasoning; philosophy can be called the study of… thinking. And I found myself unable to think, to remember things.
But, as I wrote a couple of days ago, I’ve just found out that this surgery isn’t a good option in my case. So my medical leave will have to be extended. It feels as though I’ve been derailed.
I hope you’ll forgive me for this somewhat self-pitying post. It’s not my style, but it’s an accurate reflection of the impact of this horrid disease. In early 2016, I was starting a brand new chapter in my career; with my dream job. And I was planning to start a doctoral program. That’s all gone.
Yet I know that I’m lucky. I have a fantastic relationship with my husband, supportive friends, and lots of loved ones. I can’t imagine how difficult this situation must be for people who’re alone or isolated.
If someone else you know is suffering with chronic pain, take a few minutes to call, email, or even text them… just to let them know that you’re thinking of them. Thanks!
References:
(1) Do-Hyeong Lee, Kyung-Jun Lee, Kang Ik K.Cho, Eun Chung Noh, Joon Hwan Jang, Yong Chul Kim, Do-and Hyung Kang. Brain Alterations and Neurocognitive Dysfunction in Patients With Complex Regional Pain Syndrome. Journal of Pain, 16(6): 580-586. June 2015, available online 01 April 2015. Accessed 11 May 2019. Web:
https://www.sciencedirect.com/science/article/pii/S1526590015005994
(2) Linnman, C et al. Inflaming the brain: CRPS a model disease to
understand neuroimmune interactions in chronic pain. Journal of neuroimmune
pharmacology : the official journal of the Society on NeuroImmune Pharmacology,
8(3): 547-63. Jun 2013. [doi:10.1007/s11481-012-9422-8]. Accessed 11 May 2019.
Web:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3596443/