Yesterday was “CRPS Orange Day”, to raise awareness of Complex Regional Pain Syndrome. Why is it called “Orange Day”? That’s a great question! One of the most common symptoms of this rare medical condition is a sensation of burning pain. Neuropathic – nerve – pain, strong enough to convince a person that their arm or leg is actually on fire. I’m not exaggerating; this has happened to me.
There have been times when I’ve been woken up by such overwhelming burning pain in my arm that I’ve had to stumble out of bed, go into the washroom, and turn on the light to be sure that my skin wasn’t blistering or burning. It really feels as though my bones, skin, and tissue are on fire.
The way I’ve describe this experience to some of my family and friends is to compare it to a scene in my very own horror movie. That’s in part because I don’t like horror movies, but also to create a sense of apprehension and fear. Let’s set the stage for this scene, to give you a little taste of this one symptom of CRPS. One symptom, among many others which are either painful, unpleasant, or simply strange.
Are you ready to put your imagination to work? Good! Picture this scene, as though you’re watching a horror movie at home. You’re viewing this movie alone, at night, and the wind is howling outside. There’s a storm brewing, so branches are scraping against the siding and roof of your home. The lights are off, and there’s no moonlight because of the dark clouds outside. There’s a creepy, almost spooky, feeling in your home.
On the screen, there has been an almost comedic – very short – fight between two mismatched characters. A hideous three-legged and two-headed monster, about the size of an average human male, lured a human woman into a building by simulating the voice of an injured child.
They’re inside a creepy and abandoned warehouse, with no other buildings within screaming distance. The human has pale skin, freckles, and red hair. Her name is Sympatikkah, and she has now been tied by the waist to a vertical metal beam which is solidly anchored in the concrete floor with fist-sized bolts.
This square beam runs all the way up to the second-story roof, and it’s far too wide for Sympatikkah to reach the knots that have been tied behind it. She can’t undo the thick rope pinning her to the beam. Her arms and legs, though, are unbound.
A rag has been stuffed into her mouth, held in place with a thinner rope around her head. She’s wearing casual sandals, jeans, and a short-sleeved top. Her shoulder bag lays on the grimy floor, its contents scattered to her left side. Her phone has been crushed by the monster’s foot.
To her right is a large metal drum, filled to the brim with some type of liquid. The monster has dipped her right arm into this vat, up to her elbow, and has been holding it in place with one of its oozing and scaly hands on her upper arm. In its other hand, the monster holds an oversized digital stopwatch. The image zooms in, and we can see that the timer is approaching the five-minute mark.
Once Sympatikkah’s bare arm has been soaking in this barrel of liquid for five minutes, the monster throws the timer into the darker depths of the warehouse. It reaches into its pocket, and pulls out a packet of matches. In one quick motion, the monster steps away and tosses a flaming match into the vat of liquid.
Whoosh!! It was gasoline, and now Sympatikkah’s right arm is engulfed in flames. Her face is contorted with pain, and entire body trembles with it. As the skin of her arm begins to blister and melt away, she mercifully loses consciousness. The scene fades to black.
That’s it. You now have an idea of what the burning neuropathic pain of CRPS feels like. In my case, it’s not that bad all the time. I’ve had many medical procedures geared towards slightly improving my overall CRPS symptoms and pain levels, and my doctors have prescribed a range of different medications. So far, the best we’ve been able to accomplish has been to take the edge off my pain levels.
I refer to my ‘levels’ of pain because I experience several different varieties of it from this rare condition; the burning neuropathic pain I’ve just described, but also a cold pain, and an arthritis-type pain in my wrist and each of my finger joints, as well as pain sensations from the sudden swelling of my hand. Most of the time, I’ll feel about seven different types of pain which fluctuate in their severity; sometimes hour by hour, sometimes day by day.
There are other symptoms of CRPS as well, for example temperature changes of the skin over my affected hand and arm, a full-body fatigue from the autoimmune component of this condition, and a weird assortment of other apparently unrelated issues.
Naming notes
I created the fictitious name ‘Sympatikkah’ for our hero, from several sources. Its first part was derived from the former name of CRPS; Reflex Sympathetic Dystrophy or RSD (1). ‘Sympathetic’ was part of this term because of the body’s sympathetic nervous system. Many scientists believe that CRPS may:
be caused in part by alterations to the nervous system of the body.
One part of the nervous system is the sympathetic nervous system.
The sympathetic nervous system is activated in “fight or flight” situations, which are times when the body is in high level of stress and requires alertness.
During times of stress, the sympathetic nervous system constricts blood vessels to reduce blood flow to the extremities…In CRPS, sympathetic function may initially be decreased, which could contribute to warm, red and swollen limbs.
The sympathetic nervous system may also play a role in contributing to the pain associated with CRPS.Although it is believed that the sympathetic nervous system in CRPS may become linked to pain receptors, it is still unclear exactly how the sympathetic nervous system causes pain in patients with CRPS.” (2)
The word ‘sympathetic’ led me to the word ‘simpatico’, an adjective describing something – or someone – agreeable or likable. (3) Are these two of the qualities we’d expect of the accidental hero in a horror movie? I think so! This hero is meant to have a girl-next-door vibe, which reminded me of an almost twenty year old urban slang term for a specific type of woman; a ‘Rebekkah’:
One of the best people you will ever meet.
She is smart, beautiful, and loving.
She always does the best she can for her friends, regardless the situation.
A blast to be around, Rebekkah can be known to grant such immense happiness, it’s unbelievable.
Rebekkah is so amazing she can make you smile for hours even after she leaves.” (4)
Definitely the kind of person I’d imagined for unsuspecting hero. A genuinely kind person; someone nice. That’s what brought me to the ending of our hero’s name, to the ‘kkah’ in ‘Sympatikkah’. I know it’s a strange process, just to come up with a fictitious name, but this is how my brain works… when it’s working properly!
How my brain works, or doesn’t
My background is in philosophy, specialized in ethics, and then in bioethics. Sometimes called biomedical ethics, this is the career that CRPS stole from me. It wasn’t because of the severe and constant pain of CRPS, though, that I had to leave my career and my dream job. Like the approximately 65% of patients who have this disease long-term, for more than a few years, I developed a mild cognitive impairment (MCI):
Significant neuropsychological deficits are present in 65% of patients, with many patients presenting with elements of a dysexecutive syndrome and some patients presenting with global cognitive impairment.” (5)
These days I never know whether my brain will work properly at any given time, and I can’t concentrate or focus on anything for more than about an hour or so – even on a good day. I’ll say or write the wrong word without noticing, like the time I walked around a funeral saying ‘congratulations’ instead of ‘condolences’…
Luckily one of my old friends was at the funeral parlour, who knew about my MCI; she took me aside to tell me what I’d been saying, and then went explained my MCI to everyone to whom I’d spoken. As you can imagine, I was horrified.
Well, that kind of thing happens all the time. Even here on the blog, I have to save each post, and then go back to re-read it several hours, sometimes even days, later. Or I’ll ask someone to proof-read it for me; something I’d never had to do before.
It’s because of the MCI that I can no longer do the job I love, because I simply can’t rely on my own brain anymore. Trust me, it’s not a good feeling for someone just past the half-century mark. Despite all this, and the other consequences and symptoms of CRPS, I consider myself lucky in many ways. Unlike the hero in our imaginary movie, I’m not alone in my struggles.
There’s my fantastic husband, my best friend and strongest supporter. Then there’s my huge circle of caring family members and friends, upon whom I can call for help – or even just a chat – when I need it. So many people with CRPS and other severe chronic pain conditions become isolated, often because their loved ones can’t conceive of this type of pain – this type of life.
If you know anyone who lives with chronic pain, why not take a few moments today to send them a text, give them a call, send them a card or an eCard? It might mean the world to them.
On that note, I’d like to take this opportunity to tell you how very much I appreciate your visit to this blog. Take care of yourself, tell your loved ones how much they mean to you, and focus on your well-being during this strange pandemic period.
I’m sending physically-distant hugs to you, no matter where you live, and wishing you many moments of happiness today…
References
(1) National Institute of Neurological Disorders and Stroke (NINDS); the National Institutes of Health (NIH). Complex Regional Pain Syndrome Fact Sheet. Website. Updated 14 Oct 2020. Online:
https://www.ninds.nih.gov/disorders/patient-caregiver-education/fact-sheets/complex-regional-pain-syndrome-fact-sheet
(2) National Organization for Rare Disorders, Inc. (NORD); Alexander Pham and Stephen Bruehl assisted in the preparation of this NORD report. Rare Disease Database: Complex Regional Pain Syndrome. Website. Updated 2019. Online.
https://rarediseases.org/rare-diseases/reflex-sympathetic-dystrophy-syndrome/
(3) Merriam-Webster, Incorporated. Definition of simpatico. Website. Updated 2020. Online:
https://www.merriam-webster.com/dictionary/simpatico
(4) Chef Le Mule. Urban Dictionary. Rebekkah. Website. 23 Dec 2003. Online:
https://www.urbandictionary.com/define.php?term=Rebekkah
(5) Libon, David J, Schwartzman, Robert J, Eppig, Joel, et al. Neuropsychological deficits associated with Complex Regional Pain Syndrome. J International Neuropsychological Society (JINS). 2010; 16, 566–573. Online 19 Mar 2010. doi:10.1017/S1355617710000214. Online:
https://www.cambridge.org/core/journals/journal-of-the-international-neuropsychological-society/article/neuropsychological-deficits-associated-with-complex-regional-pain-syndrome/F56D83F23BB269C52DDF43198BA0536D#
