- Posted February 6, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
Fight or Flight to Save My Foot
Lately I’ve had a really bad feeling about my prognosis, although my Doctor told me not too long ago we still might be able to change the trajectory. I’m worried about losing my left foot. And potentially the right. And it wouldn’t be unprecedented if one or both of my hands became disabled as well. I have a very rare condition that all started with my breaking my ankle nearly two years ago.
Chronic Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD) affects approximately 1 in 4,000 people who have sustained some sort of trauma to a limb. It’s rare enough where few of my healthcare providers have never encountered a case, and it took over two months of me insisting the pain was not just a symptom of anxiety (the original diagnosis) before anyone even suggested it might be CRPS.
In a nutshell the nerves in my foot keep acting as if there’s been some recent and unacceptable trauma – a malfunction to the “fight or flight” response of your sympathetic nervous system. The pain signals begin locally, but if it goes on long enough the limbic portion of the brain takes the whole thing over. It’s much harder to treat when it gets to the brain. Mostly what’s discussed in the medical world about this condition is just how much is unknown and how little is understood.
The number one symptom is pain. It ranks as the most painful condition on the McGill Pain Scale:
AskMen.com lists RSD as #2 of "Six Crazy Diseases" (although I count only five):
I’ve endured scores of injections in my foot, four Lumbar Sympathetic Blocks, hours of physical therapy, many sessions of acupuncture, a variety of opiates and countless topical concoctions. I’ve been seen by podiatrists, neurologists, psychiatrists, pain specialists and anesthesiologists; had 2nd opinions, 3rd opinions, too many opinions frankly, as often there is no agreement on a course of action.
There’s no agreement in medical literature either, just the understanding that the earlier the intervention the better. Never has the phrase “move it or lose it” had more meaning. I try to visualize myself running to stay ahead of the disease. Although I’m on crutches now, that hasn’t always been the case and I fully intend to walk again, if not run.
I’ve had to navigate a cumbersome HMO and travel ridiculous distances for common treatments. I’m sure I’ve been considered a difficult patient and yet I’m forced to demand appropriate attention again and again. I’ve reached my deductible two years running, and already well on my way to a third.
I can’t imagine any condition that would affect me more personally. To start, I hate feet; it’s one of my many idiosyncrasies that I never really paid too much attention to until now. Second, the go-to medications for CRPS are exactly the kinds of things I’ve sworn I would never, ever take again. Next, the pain in my foot gets worse with use. My whole life I’ve preferred to go by foot – I’ve meandered many cities and backpacked a lot of mountains. There’s no way else I’d rather go but nowadays I’m not getting very far. I also have an extreme sensitivity to vibrations that makes riding in a car difficult and makes going to amplified concerts intolerable. This might be the hardest part of all – my kids are aspiring musicians.
This has also greatly changed my career expectations. I was just days away from obtaining a new degree and beginning a new career when I broke my leg. A few months later I was lucky to find a flexible freelance opportunity, but I can see that slipping away along with my ability to walk. Although a lot of my work is done on a computer, as an aspiring Landscape Architect, it’s important to be able to walk on uneven terrain as well as construction sites.
Sometimes when you look at my foot you wouldn’t know much of anything was wrong. Although there are observable signs of CRPS, mostly I just have the symptoms. If that doesn’t make sense, understand pain is a symptom – a physician can’t directly see your pain – while swelling is an observable sign. Without any signs everyone just have to take your word for everything. I know I should be happy when my foot isn’t swollen and mottled, but sometimes it has been hard to convince someone new to my care of the validity of my diagnosis.
There are psychiatric conditions that can be easily confused with CRPS. And to be honest I think all of this pain and stiffness, the fight-or-flight of it, how personal it all seems to be, combined with a lack of any real understanding or control over the future is actually making me crazy. Which, of course, exacerbates the pain.
But will I lose my foot? Literally, probably not, although some people with this condition have opted for amputation. In addition to the pain, my foot is twisting and contracting, a condition that so far is not yet rigid or fixed. If it were to become so it may not be reversible. There’s no timeframe, no point where I am “out of the woods.” It could all but go away only to return 10 years from now. It could spread to other limbs. The pain could disable me as easily as the contractures. I don’t know when I went from “acute” to “chronic” CRPS but the cerebral portion of my brain may just be starting to grasp this concept.
I wish I could conclude that my trials with CRPS have made me a stronger being, pushing me to become one of those glass-is-half-full kind of people, but so far that’s not the case. While I never expect to look at CRPS as a blessing, it would be nice not to feel so cursed by it. So short of total remission, it is my sincerest hope that I will face my altered future with the optimism and courage I envy in other people facing life's challenges.