Regular readers of this blog may know that I live with a rare disease, called Complex Regional Pain Syndrome (CRPS). It used to be called Reflex Sympathetic Dystrophy (RSD), so some physicians and other healthcare professionals still refer to it as RSD. That’s just one of the confusing aspects of this medical condition!
By either name, CRPS or RSD, it’s considered to be “a highly enigmatic syndrome”.(1) It causes a broad spectrum of clinical signs and symptoms; so many, in fact, that each patient tends to have their own specific set. This makes it particularly challenging to treat – when any treatment is possible for a specific symptom, that is. Sometimes, there simply are none.
Another of the many difficulties with CRPS is that its etiology – its cause – has not yet been found. Without a clear scientific understanding of its underlying cause(s), researchers haven’t yet been able to develop effective and reasonably safe treatment options for the disease as a whole.
This leaves even specialist clinicians trying to play “whack-a-mole” with each patient’s set of symptoms:
Complex regional pain syndrome (CRPS) is a disease that has perplexed clinicians and basic scientists alike…
It can manifest in any given individual, although it is more common in females, and many of its features are difficult to explain on a pathological level.”(2)
Making treatment even more challenging, to both physicians and patients, is the fact that the symptoms of CRPS often evolve or change over time. This has happened to me, several times, since I was first struck with this condition in 2016.
The most debilitating and life-changing of these has been my newest symptom; I was diagnosed with a CRPS-related ‘mild cognitive impairment’ in late 2018:
If CRPS is not improved in the acute phase and becomes chronic, the visible symptoms change throughout because of the changing pathophysiology; the pain, however, remains.”(2)
Those changing or evolving symptoms are what’s meant by the term “changing pathophysiology” in the quote above. The best way that I’ve found to explain this, to my family members and friends who haven’t worked in healthcare as I have, is that CRPS is a chameleon disease. It keeps changing, but no one knows why. Not yet.
The chameleon nature of CRPS doesn’t end there. The scientific assumptions about this condition are also changing, sometimes very rapidly. Even though CRPS has been reported in the medical literature for hundreds of years, researchers are still attempting to understand it; how and why it begins, what causes it to evolve, why it strikes some people but not others, why it seems to resolve – to go away – in some instances.
One recent change in these scientific assumptions has been the discovery that CRPS is not only a neuro-inflammatory condition, as it was first explained to me in 2016. A 2018 article in a medical journal confirmed that CRPS should now also be considered an autoimmune and auto-inflammatory disease:
Accumulating evidence suggests that CRPS may involve both autoinflammatory and autoimmune components…
While CRPS displays a complex neuroimmunological pathogenesis, therapeutic interventions could be designed targeting autoinflammation, autoimmunity, or the neural support for these phenomena.”(1)
This new scientific understanding of CRPS is particularly important these days. Why? Fantastic question! Because people living with autoimmune disorders are considered to carry a much greater risk of complications from viruses like the one with which the world is currently grappling.
That means that if I catch COVID-19, I’m much more likely to have a worse outcome – death, for example – than a person without this underlying disease. I used to work in epidemiology and public health, before moving to clinical research ethics, so I might have a better than average understanding of the kinds of large-scale measures to limit the spread of this virus.
If nothing else, I was already following a number of well-respected and trustworthy experts in these fields on social media. A number of these experts are realizing that many people who seem to be well, not to be sick, do in fact have COVID-19. The asymptomatic carriers of the virus don’t experience any symptoms, so have no reason to request testing.
Without testing, they don’t realize that they are infecting others, spreading this virus through our communities through their day-to-day activities. There is no large-scale quarantine here in Montreal, no reason for someone who feels well to stop going for walks, to the supermarket or pharmacy, etc.
Because of this insidious spread of COVID-19, I hope to see a recommendation from global public health authorities – in the very near future – that everyone should wear a mask anytime we go out. Not the types of masks needed by all the healthcare workers keeping our ambulances, hospitals, seniors’ care centres, and much more functioning.
A different type of mask, one that would prevent each of us from spreading the disease – in case we’re one of the asymptomatic carriers of this coronavirus. Regardless of the fact that there hasn’t been any recommendation for the general public to wear masks in my area, I decided to start wearing one. Today, when I went out to the supermarket to pick up some groceries.
I have an old sewing machine at home, along with quite a lot of cotton fabric that I bought several years ago; for a few creative arts projects that I’d planned, but was then never able to begin because my CRPS affects my right and arm. Despite the CRPS, I think that I could still manage to sew some simple masks for my husband and myself.
There are a few relatively simply patterns already available online, and I’ve already printed one out to try later on. Wish me luck, as I’ll be trying to pin, pleat, and sew these masks more or less without using my right hand… and I’m, of course, right-handed.
If I am able to sew these masks, then I’ll make some for relatives over 70, then my sister and brother-in-law, and their adult sons. Then friends, and… well, you get the idea. In the meantime, though, I still had to go out this morning to pick up some food.
So I threw together a temporary face mask, using a rectangular silk scarf that I’d received as a gift from my beloved mother-in-law. I folded it in three along its length, then added a folded piece of paper towel between the two inner layers at the center of the strip of silk.
Why the paper towel layer? I read on a website for healthcare professionals that a folded piece of paper towel can help block virus droplets, in masks meant to prevent the spread of COVID-19. I bunched up each end of this strip of folded scarf into a regular elastic band, and left enough slack in the elastic to wind it behind each ear.
As you can see from the photo, I ended up with little puffs of silk over each eat. It looked very goofy, but it was a cold day and this kept my ears warm ‘-) I actually got a few compliments on my mask, and I was surprised to see several other people at the supermarket wearing homemade facemasks as well.
To prevent spreading COVID-19, in case you are one of the people who is carrying the virus but still feeling well, please consider making your own masks to wear anytime you go out into a public space. It’s important not to fiddle with it – not to adjust it – once you’ve left your home, so be sure that it’s comfortable when you leave.
Then, when you get home, don’t take off the mask until you’re standing in front of your washing machine or laundry basket! These temporary masks should be washed as often as possible. If you put in a temporary filter, like the piece of paper towel that I used, don’t forget to shake it out of the mask prior to washing it ‘-)
You don’t need to have fabric at home, or a sewing machine; some of the mask patters and instructions I’ve found have used old (clean!) cotton sheets, or old shirts. If you’d like to try this, a Google search will turn up a number of mask ideas.
The mask I’ll be trying to sew was created by the Good Housekeeping Institute – in collaboration with healthcare professionals – for folks who happen to have a sewing machine along with some very specific materials like bias tape. I won’t post the link here, not until I’ve tried it myself!
I wish you, now more than ever, health that’s as good as it can be. Take care of yourself, find activities to keep yourself and your loved ones busy, and why not consider this to be a good time to try something new… like trying to sew some face masks! Thanks so much for stopping by.
References
(1) David Clark J, Tawfik VL, Tajerian M, Kingery WS. Autoinflammatory and autoimmune contributions to complex regional pain syndrome. Molecular Pain. 2018 Jan-Dec. Volume 14; 1744806918799127. doi: 10.1177/1744806918799127. Epub 2018 Aug 20. Online. Accessed 08 Apr 2020:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6125849/
(2) Frank Birklein, Violeta Dimova. Complex regional pain syndrome-up-to-date. PAIN Reports; PAIN Clinical Updates. Nov/Dec 2017. Volume 2; Issue 6; page e624. doi: 10.1097/PR9.0000000000000624. Online. Accessed 08 Apr 2020.
https://journals.lww.com/painrpts/Fulltext/2017/12000/Complex_regional_pain_syndrome_up_to_date.8.aspx?WT.mc_id=HPxADx20100319xMP