At the start of my weekly virtual watercolour painting class today, several of us began chatting about our non-art careers or past jobs while our artist-instructor was getting set up. Two of the students said that they had been physical therapists before they retired, so I mentioned that I’d recently been a volunteer Patient Partner on a couple of projects with the Canadian Association of Physiotherapists.
At that point, one of them said that she had been wanting for a few weeks to ask me about the dynamic splint that I wear on my right hand and arm during most of these classes. They’re ZOOM video-meetings, so we can see each other during the sessions, and she had noticed the odd-looking contraption on my hand during most of our classes since September.
I explained that it was a dynamic splint to prevent one of the long-term risks of Complex Regional Pain Syndrome (CRPS), still sometimes known by its old name; Reflex Sympathetic Dystrophy (RSD). Long-term CRPS can result in something called ‘claw hand’, when a person’s hand becomes more or less frozen into a claw-like position; amputation is sometimes required after this occurs, in part because infection often sets in due to problems that then develop in the bones.
As physiotherapists, I thought they might have been familiar with CRPS – and with this risk of ‘claw hand’ and subsequent amputation. I say “might have been familiar with” it because CRPS is a rare condition; some healthcare professionals have never heard of it, although physical therapists tend to be an exception as their field is crucial in treating patients afflicted with this disease.
CRPS is actually seen as being two different types of diseases in one. First it’s a neuro-inflammatory condition that can causes several distinct or different types of neuropathic pain (nerve pain), all at the same time. In my case this neuro-inflammatory aspect has also resulted in a mild cognitive impairment, which is why I had to step away from a career that I adored, in bioethics, at the end of 2018.
As noted in the July 2021 edition of the evidence-based and peer-reviewed medical journal of the American Academy of Family Physicians:
Complex regional pain syndrome (CRPS) is a rare, chronic pain disorder.
Lloyd et al. Complex Regional Pain Syndrome. Am Fam Physician. 2021.
CRPS typically develops four to six weeks after direct trauma, such as an injury or surgery, and causes pain that is out of proportion to the inciting injury.
There is no single proven treatment modality for CRPS, and there have been no large randomized controlled studies of CRPS treatments.
Most treatments are based on studies of their use for other types of neuropathic pain.
The mainstay of treatment is to improve function of the affected body part and to decrease pain” (1)
Second, CRPS is also an autoimmune condition, with symptoms like full-body fatigue and several different issues with bones and joints in the affected areas. CRPS, by the way, usually affects the limbs. Traditionally either a person’s arm and hand or foot and leg are affected, although it can strike more than one limb or even spread to the organs. My CRPS is limited to my right hand and my lower arm, to between the wrist and the elbow.
‘Claw hand’ is one of the bone and joint issues that can arise, we suspect, from the autoimmune aspects of the disease. There might be a neuro-inflammatory cause for this as well, but one hasn’t yet been identified. Unfortunately, because CRPS is uncommon, not much is known about how it develops – its etiology – or how it progresses once it occurs:
The stages of ischemic contracture and ankylosis of CRPS… are phases where it is no longer the pain that limits movements but an actual muscle contracture from fibrosis or ankylosed joints of claw hand which makes movements impossible.” (2)
Vas et al. Musculoskeletal Ultrasonography in CRPS. Pain Physician. 2016.
My dynamic splint, which looks something like a movie character claw, uses elastic bands to exert force and pull each of my fingers upwards. A set of metal coils, or springs, does the same for my wrist. One elastic per finger, pulling the digit upwards – all four fingers at the same time. The idea is that forcing each finger joint, and my wrist joint, into an extended or. open position could counteract the ‘claw hand’ effect of CRPS. For some reason, the thumb of my right hand is not affected by CRPS, for which I consider myself very lucky!
So not only am I learning watercolour painting as a kind of DIY (do it yourself) combination of hand/arm movement therapy for CRPS, and as a DIY brain-challenging tool for my CRPS-related mild cognitive impairment, today this was also an opportunity for some art-as-advocacy… raising awareness of CRPS because all of the other students were listening intently to this conversation with the two retired physiotherapists!
As always, thanks so much for stopping by. Feel free to reach out, with comments or suggestions, over on Instagram or Twitter; managing the Comments function here on the blog got to be too much for my cognitive impairment to handle, so I’ve had to disable that feature.
I wish you many moments of happiness in your day, today and every day. Look after yourself, and if you need help doing that please reach out to someone who understands whatever it is that you’re going through; whether it’s chronic pain, another chronic condition or rare disease, or any other challenge or crisis that you might be experiencing – it’s not a sign of weakness to ask for help. It’s a sign of strength… it takes courage to make oneself vulnerable by asking for help. Distant hugs, and I hope to see you back here soon ‘-)
References
(1) Lloyd ECO, Dempsey B, Romero L. Complex Regional Pain Syndrome. Am Fam Physician. 2021 Jul 1;104(1):49-55. PMID: 34264598. Online. Accessed 01 Dec 2021 (link to abstract only; full article may be paywalled): https://pubmed.ncbi.nlm.nih.gov/34264598/
(2) Lakshmi Champak Vas, Renuka Pai, Manorama Pattnaik. Musculoskeletal Ultrasonography in CRPS. Pain Physician. 2016; 19:E163-E179. Online. Accessed 01 Dec 2021 (link to abstract only; full article may be paywalled): https://pubmed.ncbi.nlm.nih.gov/26752485/