It’s time for the final post in this five-part series, marking the halfway point in CRPS awareness month. Confusion surrounds many aspects of this medical condition, and I’d set out try to dispel some of it. The questions surrounding Complex Regional Pain Syndrome, which we’ve considered over the past few days, have included; what it’s called, what it is, how to test for (or diagnose) it, how to treat it, how to live with it.
That last question, well, that’s the most difficult to answer. After all, CRPS “is a disease that has perplexed clinicians and basic scientists alike”(1). It’s no less perplexing to those of us living with it!
This disease causes constant and often excruciating pain, at a baseline or day-to-day level. Multiple different types of pain, which might be experienced at differently levels of severity over the course of any given day, hour, week.
The common thread running through all the different types of CRPS pain tends to be neuropathic pain; nerve pain. Most, if not all, patients with this condition will experience neuropathic pain as part of their baseline pain profile. Again, that’s our constant – all the time – nerve pain.
Almost all patients with CRPS will experience skin allodynia, a type of neuropathic pain in which something that wouldn’t be expected to hurt does indeed cause pain. The touch of fabric on the skin of my hand and arm can cause allodynia, as can the touch of another person, or a light breeze. Sometimes my own breath will trigger allodynia, if my hand is on my lap!
Why I am using terms like ‘almost all’ or ‘common’, rather than discussing all CRPS patients? Because this disease is known to present differently in different individuals. My experience of this disease will almost certainly be different from someone else with CRPS, even within the same pain management unit. For example, the one at which I’m a patient, at a university hospital.
When I blog about Complex Regional Pain Syndrome, I’m writing about my own patient journey. That said, I also try to incorporate what other patients have told me about their own individual versions of this condition. My goal is to raise awareness of this disease, in all its complexity, rather than only of my own story.
Another common thread, in the fabric of life with CRPS, is what we call ‘pain flares’. These are sudden and often completely unexpected flares of… you guessed it!… neuropathic pain. My pain flares can sweep my legs right out from under me, drop me to my knees. If someone so much as bumps into my right hand or arm, one of two things usually happens.
Neither is better than the other, really. Either I’ll drop into a dead faint, or I’ll vomit. I’ve learned to avoid crowds, unless my husband is with me; he keeps to my right side, to protect my hand and arm from contact with others.
Over the past few years there have been a number of medical and scientific conferences that I’d have loved to attend, even as close to Montreal as Ottawa and Toronto. To be a patient partner, as I was at the 2018 annual scientific meeting of the Canadian Pain Society (CPS).
Can you imagine traveling alone – through airport security, then on the aircraft itself – with this invisible disease? Knowing that if someone so much as touches your hand, you’ll either faint or vomit? That doesn’t make for fantastic images, does it? So I don’t go; I miss out on these conferences.
I miss out on a lot, really. That’s not specific to CRPS, by the way. Many other chronic pain conditions make it difficult or impossible for a person to attend events, to travel, to fully enjoy life in the ways that they did prior to the onset of disease. This is why I also raise awareness of chronic pain, for example during Canada’s National Pain Awareness Week earlier this month.(2)
Some of the folks with whom I’ve been in frequent contact since 2016, during the course of my own patient journey and advocacy, don’t have CPRS. They have arthritis, endometriosis, fibromyalgia, inflammatory bowel disease, and phantom limb pain.
In some cases, an individual can be practically house-bound due to their pain symptoms. I am constantly humbled by the determination and efforts of these people, also striving to raise awareness and advocate for other patients with their conditions.
I remain thankful – always! – that I’m still able to go out and do things by myself, even if that means having to avoid busy areas, crowds, travel, and the like. Whenever I talk about this disease, which happens often given that I’m trying to raise awareness of it, I finish off by saying that I’m lucky.
My CRPS could be so much worse. I know patients who’ve lost limbs to CRPS, had arms or legs amputated. People whose allodynia affects the skin all over their bodies, for whom wearing any clothing is excruciating.
Or patients who weren’t able to cover the costs of physical therapy, an important facet of treatment for CRPS, whose joints have frozen because of this disease. This medical condition affects so many different functions within a person’s body that it’s still considered to be one of the most difficult diseases to treat.
It could be so much worse, for me. Despite the fact that my CRPS recently did get quite a lot worse, but not in terms of the pain itself. Instead, late last autumn I developed a new and completely unexpected symptom of this rare autoimmune and neuro-inflammatory disease; 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.”(3)
Today’s post began with the question of how to live with CRPS. There is no answer to that question. Because each of us living with CRPS effectively has a different version of the disease, we each have to muddle through and find our own individualized way to live with it. Them, just when we think we might have a handle on the condition, it goes and changes on us.
In my case, living with CRPS is largely about finding things that I can do, rather than focusing on what I can no longer do. Being thankful for everything that I have, rather than on what CRPS has taken away. My family, my friends, my ability to help others, my creativity; those I still have, and cherish.
I can still ride my bike, albeit using only one arm, walk in the forest near my home, hike or snowshoe up and back down a mountain. I can still find beauty and peace in nature, in the outdoors. My thinking has gotten fuzzier, my memory isn’t so sharp, and the mild cognitive impairment (MCI) due to CRPS is constantly frustrating… but it could be worse.
For me, that’s the key in getting through the roughest moments, days, or weeks with CRPS. It’s about being thankful that my situation isn’t worse – about appreciating all the beauty, good, happiness, and kindness in my life.
That’s my answer, to the question of how to live with CRPS. To continue to appreciate life, the same way I did before CRPS stole away so much from me. And to try to help others, always!
Thanks so much for reading, for sharing in this patient journey with me. If I could ask something of you, it would be to talk about CRPS with a friend or family member. The only way, at this point, to prevent the long-term consequences of this disease is for it to be diagnosed and treated quickly; within the first three months after the symptoms begin. For that to happen, more people need to become aware of this condition and to recognize it!
Keep an eye out if you use Instagram, Twitter, or other social media, for announcements about awareness activities and events; and for photos of folks wearing orange, the official colour of CRPS awareness ‘-)
References:
(1) Russo, M.A., Fiore, N.T., Vreden, C. et al. Expansion and activation of distinct central memory T lymphocyte subsets in complex regional pain syndrome. J Neuroinflammation. 2019;16(63). Online 18 Mar 2019. doi: 10.1186/s12974-019-1449-9. Accessed 17 Nov 2019. Web:
https://jneuroinflammation.biomedcentral.com/articles/10.1186/s12974-019-1449-9
(2) Canadian Pain Society (CPS). National Pain Awareness Week. Online. Accessed 17 Nov 2019. Web:
https://www.canadianpainsociety.ca/page/NPAW
(3) David J. Libon, Robert J. Schwartzman, Joel Eppig, 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. Accessed 17 Nov 2019. Web:
https://www.cambridge.org/core/journals/journal-of-the-international-neuropsychological-society/article/neuropsychological-deficits-associated-with-complex-regional-pain-syndrome/F56D83F23BB269C52DDF43198BA0536D#