As someone who lives with a rare disease, and has a background in healthcare and medical research, I try to follow any research news that might affect my condition. Because Complex Regional Pain Syndrome (CRPS) is rare, there’s not usually much research published specifically about it.
We don’t yet know what causes it, or why it develops in some people but not others. CRPS is difficult to diagnose, and to treat, because it can present differently in each patient; each patient with CRPS can have their own specific set of symptoms, from among a long list of potential symptoms:
The underlying pathophysiology seems to be complex and probably varies between patients.” (1)
Back in June, though, a new paper was published in a medical journal. A group of pain specialists prepared a “Comprehensive Review” (2) of CRPS. As expected, there hasn’t been much progress in identifying the cause(s) of this disease, nor any truly effective treatments:
In conclusion, CRPS is a multifactorial condition that still requires further studying to better understand its pathogenesis, epidemiology, genetic involvement, psychological implications, and treatment options.
Future studies are warranted to better understand this syndrome.
This will provide an opportunity for better prevention, diagnosis, and treatment of CRPS.” (2)
What is interesting in the comprehensive review article is that there is finally a clear acknowledgement that CRPS can cause cognitive impairment. This is particularly important to me, because I was diagnosed at the end of 2018 with a ‘mild cognitive impairment’ or MCI. That MCI stole my beloved career in bioethics, and it has significantly impacted my life and my long-term plans.
Having to step away from my career – and to stop working completely – in my early 50s was never part of my financial planning. Then last year my husband decided to retire early, to be able to spend more time with me, after we realized that some of my cognitive issues – for example forgetting words and planned activities – were worse when I was at home alone all day…
Despite meeting up with friends for coffee or walks every day (prior to the pandemic), I’d spend most of my time alone. My husband would leave home at about 0600 to go to the gym at his office before work, and wouldn’t get home until about 1900 most days. When I was working I had the same schedule, although I’d leave a bit earlier to go to a gym; most days I was out the door by 0500, back home by about 1900.
Going from that lifestyle to being home all day was very difficult for me; it still is, really. For the first few months I felt completely adrift, even though at the time I was convinced that my brain would soon be back to ‘normal’ and that I’d be able to get back to the career that I adored. But that never happened, and my MCI is now considered to be permanent.
That, by the way, is why I can only blog intermittently these days. I have to be having a relatively ‘good day’ in order to be able to write. Today is one of those days, so here I am at my computer! After over a year of being mostly home alone, my husband and I had both noticed that my cognitive issues seemed to be worsening.
At the end of 2019, he took a two-week vacation that we spent at home together. He told me that he’d seen a real improvement in my cognitive issues during that time, which I had also noticed. After that, we’d try to see each weekend whether my cognitive issues would improve after a day or two together – and they did. Not enough for me to even dream of going back to work, but at least I could better carry a conversation or even read a bit more than I had been able to.
So at the start of 2020, before the current pandemic began, he decided to retire early. Because of my mild cognitive impairment, caused by CRPS. He ended up retiring and then continuing to work part-time, on contract, for the same company. That has been a good transition for him, and for our financial situation, but he specified in his contract that he would work from home; so that I wouldn’t be alone all day again. For me.
Despite the enormous impact of the MCI on my life, on my husband, on the rest of our family, and even on my friends, pain researchers and specialists rarely mention the cognitive impacts of this disease. So I was relieved to see the neurological aspects of CRPS finally stated in this new comprehensive review article:
CRPS seems to cause complex neurological changes that can affect a patient’s way of life similar to that of a brain lesion.” (2)
There’s more in this article that I want to talk about, but I’m at the limit of my ability to concentrate and focus for today – as a result of the MCI – so I’ll wrap this up now and head out to spend some time in nature.
As always, thanks so much for stopping by. Stay safe, keep well, and I wish you at least a few moments of happiness and joy in your day ‘-)
References
(1) Birklein, F., Ajit, S., Goebel, A. et al. Complex regional pain syndrome — phenotypic characteristics and potential biomarkers. Nat Rev Neurol 14, 272–284 (2018). doi.org/10.1038/nrneurol.2018.20. Accessed 05 Aug 2021:
https://www.nature.com/articles/nrneurol.2018.20#citeas
(2) Taylor, SS., Noor, N., Urits, I. et al. Complex Regional Pain Syndrome: A Comprehensive Review. Pain Ther (2021). doi.org/10.1007/s40122-021-00279-4. Accessed 05 Aug 2021:
https://link.springer.com/article/10.1007/s40122-021-00279-4