Every now and then I remember how it felt to be me, back before I broke my arm in March 2016. Such a simple little fracture, really. I didn’t even need surgery, and the bone healed up nicely.
Unfortunately, that snapped radius triggered a rare autoimmune and neuro-inflammatory disease. It started in my fingertips, but by the time it was diagnosed – which unnecessarily took almost three months! – the disease had spread up my arm – to above my wrist.
CRPS is a bizarre disease, in that each patient may have a different set of the many possible symptoms. The most common is severe neuropathic pain, which can be combined with joint pain and other types of pain. As in my case. Then there are other symptoms, which would seem to be unrelated to each other.
It generally has been accepted that over time CRPS affects the somatosensory, autonomic, and limbic components of the pain matrix in a majority of severely affected patients.
The systemic complications of the syndrome are not as well appreciated.”(1)
“Not well appreciated” is another way of saying that something isn’t well known. In this instance, the authors mean that it’s not well known even among physicians. One of the symptoms that I’ve been noticing a lot more over the past few months is fatigue.
It doesn’t seem to matter how long I sleep, I just can’t seem to wake up rested. I don’t know if I’m being woken up by pain flares more often than usual, or if this is a progression or the disease. For the first few weeks of this, I thought I was coming down with a cold – but then I never developed a sore throat, or cough, or runny nose.
So, I did what I usually do for this odd duck of a disease. I checked the medical and scientific journals, to see whether fatigue was a serious symptom of CRPS. None of my physicians had mentioned this symptom to me, although maybe they were simply assuming that if I hadn’t brought it up it meant that I wasn’t experiencing it ‘-)
Sure enough, fatigue is a common symptom of Complex Regional Pain Syndrome. I should have expected this, given that it’s an autoimmune condition:
Almost all severely affected CRPS patients complain of lethargy, tiredness, and weakness.
As the illness progresses, there is an increase of proinflammatory cytokines in the serum and cerebrospinal fluid and a decline in anti-inflammatory cytokines…
The increase in inflammatory cytokines leads to brain interactions that trigger a cascade of behavioral responses, including pain facilitation.
The severe fatigue suffered by the majority of CRPS patients at all stages of their illness may result in part from engagement of the sickness response circuitry.”(1)
In a way, it’s a good thing that I found this article, because it also explains another mystery. When I was first struck with this disease, my right hand and arm always felt hot. Often it felt as though my hand was on fire, or that someone was holding a blowtorch to it.
Recently, though, I’ve been feeling a different type of pain; the opposite. Now it sometimes feels as though someone’s holding ice against my skin, or that I’m getting frostbite. Apparently that switch, from hot pain to cold pain, is a matter of timing in this disease:
“Early in the course of the illness (<4 months of illness), the affected extremities are often warm and demonstrate higher skin perfusion than unaffected extremities.
In patients who have had CRPS for longer than 2 years, the extremity is usually cold.
It is believed that early in the disease there is CNS autonomic dysregulation.
Over time, however, there is upregulation of noradrenergic receptors or an increase in their sensitivity on blood vessels that may increase their responsiveness (vasoconstriction) to circulating norepinephrine from the adrenal gland.”(1)
That makes sense, because I was diagnosed with CRPS two years ago last month. Maybe that’s when the fatigue really kicks in, as well. At the two-year mark, I really expected that things would be better than they are with this disease, but it sometimes seems as though it’s playing tricks on me.
Well, I’m planning to play a trick on CRPS. I’m really hoping that by this time next year things will be looking up; that I’ll be feeling better and back to my old self again. My specialist still has a few treatment options to try, and I’m confident that one of them will work – Wish me luck!
As always, thanks so much for reading! Have a wonderful evening, and a fantastic day tomorrow ‘-)
Reference:
(1) Robert J. Schwartzman. Complex Regional Pain Syndrome: Systemic Complications. Practical Pain Management. Online. 27 Oct 2014. Web:
https://www.practicalpainmanagement.com/pain/complex-regional-pain-syndrome-systemic-complications