This wraps up the sixth annual awareness day for Complex Regional Pain Syndrome (CRPS), the disease with which I’ve been struggling since 2016. It causes a multitude of symptoms, including a variety of different and distinct types of pain.
From the pain of ankylosis, similar to scar tissue, forming in each of the joints to excruciating neuropathic pain – nerve pain. A burning feeling, as though the area is being blowtorched. An icy cold sensation, if you can imagine an ice pack being held for too long against your skin. An extreme sensitivity of the skin, called allodynia. And more…
Complex regional pain syndrome (CRPS) is one of the most challenging chronic pain conditions of the limbs.
There is little agreement with regards to the aetiology, symptoms, clinical presentation, diagnosis, or treatment of CRPS.
In fact there is confusion regarding the terminology itself.
Historically, CRPS has been described by a number of terms that include causalgia, Sudeck atrophy, reflex sympathetic dystrophy (RSD), algodystrophy, post-traumatic dystrophy and shoulder-hand syndrome.”(1)
Constant, consistent, pain is the hallmark of CRPS; for many types of pain at the same time. In my case, only my right hand and lower arm are affected; but if someone inadvertently bumps my hand, I’ll either faint or vomit. From the instantaneous and intense pain. You can see how this would negatively impact my life, right?!
Worse than this, though, were the symptoms that cropped up late last year. Mild cognitive impairment, or MCI. I’d forget things, details that I’d normally recall without needing to take notes. At home, at work.
Sometimes I’d drive somewhere, and then forget why I was there. I’d make a phone call, and then forget the point of my call. I chaired a number of meetings at work, at least weekly, which I’ve always adored doing. But I began using the wrong words in my presentations.
I’d mean to say “an element of…” but would instead say “an elephant of”, or “this philanthropic foundation” would come out as “this philatelic foundation”. Philately is stamp collecting, which had nothing to do with my work – or even my life! It’s not a word that I’d ever use in conversation…
The same would occur when I was writing; emails, formal letters, guidance documents. As I was speaking, or writing, I’d have the correct word in mind – but that’s not what would come out; in my mind, however, I was certain that I’d use the correct word.
It was very disconcerting that I couldn’t tell when I’d used the wrong word(s). I’d have to reread anything I’d written, several times, to search for words out of context and for statements that made no sense.
I’ve always loved writing – you can probably tell that from this blog! Now I need friends and other loved ones to proofread my own blog posts ‘-(
I first put it down to stress, or fatigue. I was working at my dream job, combining my passions for bioethics and philanthropy, but it was a very busy time of year. As you can imagine, the holiday period is always extremely busy for charitable funding requests!
In terms of fatigue, I mean more than simply being tired. CRPS is both an autoimmune condition and a neuro-inflammatory disease, so it causes the same type of full-body fatigue experienced by those with other autoimmune conditions. If you’ve ever had the flu, real influenza rather than a bad cold, imagine feeling that bone-crushing fatigue – all the time!
Even after several weeks off, on short-term medical leave from my dream job, those cognitive issues didn’t resolve. At this point, I’m somewhat in limbo, despite being treated for chronic pain at a university-hospital pain management unit. I’m waiting to see what can be done to improve the MCI, in addition to what’s already been tried.
This is why it’s so important to raise awareness of CRPS, by talking and writing about it, by wearing orange – the colour of this disease – on #CRPSOrangeDay. And throughout the rest of November, for #CRPSAwarenessMonth. Again this year, also for Canada’s National Pain Awareness Week #NPAW2019 which coincides with CPRS awareness day.
It’s important to raise awareness of CRPS to prevent this impact on people’s lives. Patients like me, who have jobs they love – people who want to go back to work – but instead find themselves in a kind of hinterland. Living in constant and severe pain, experiencing cognitive issues, and hoping for a treatment which will allow them to return to work.
I miss my job, my colleagues; the feeling of teamwork I’d experience on a regular basis at the office, the satisfaction of helping others to achieve their goals or to learn something new.
If there had been greater awareness of CRPS, even in 2016 when mine struck, I might not have waited almost three months for a diagnosis – for treatment to finally begin. If I’d been treated as soon as the signs and symptoms presented, there’s a good chance that my CRPS would have resolved… would have gone away.
Instead, I have to live with knowing that this lack of awareness of CRPS may have caused my situation to become permanent because:
Failure to treat early may result in lifelong pain, loss of function, or even amputation; unemployment and prolonged disability are common…
Early treatment can lead to near resolution of the syndrome and the prevention of long-term pain, loss of function, and disability.”(2)
It may well be too late for me; for any hopes of regaining the use of my right hand and wrist, living without chronic and excruciating pain, and finding effective treatment for CRPS-related mild cognitive issues.
But increased awareness of CRPS could very well prevent this from happening to someone else, perhaps even to someone you love. That’s why I blog about my own patient journey, why I share a story that’s so deeply personal that I’d often prefer not to share it. Why I’m open about this disease, and its effects on me and my life, on other social media.
The more people know about CRPS, the more likely it is that some future patient will be diagnosed – and treated – quickly enough to prevent its long-term effects.
As always, thanks so much for reading! This post comes with a special request, in honour of CRPS Awareness Month; please talk about this disease with someone you know this month, preferably with someone who has never heard of it ‘-)
[Thanks to VJ for the concept and the photograph of me wearing orange for CRPS day, and sitting on that orange-painted rock in the forest… the paint was already there, folks, it wasn’t our doing!]
References
(1) Sebastin SJ. Complex regional pain syndrome. Indian J Plast Surg. 2011;44(2):298–307. doi:10.4103/0970-0358.85351:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3193642/
(2) Winston P. Early Treatment of Acute Complex Regional Pain Syndrome after Fracture or Injury with Prednisone: Why Is There a Failure to Treat? A Case Series. Pain Res Manag. 2016;2016:7019196. doi:10.1155/2016/7019196:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4904610/