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What it’s like ... to live with off-the-charts chronic pain

Things don’t make sense where our nervous system is concerned. The “brain” of our body and the seat of perception, it confounds even the most educated among us.

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We like things to make sense. If we're depressed, we look for a cause. If we get sick, we want someone with answers to tell us what to do. If we injure ourselves, healing is supposed to follow a natural progression; when things go wrong, we want there to be an explanation.

But things don't make sense where our nervous system is concerned. The "brain" of our body and the seat of perception, it confounds even the most educated among us. Impairment springs from the oddest of places, while nerves lack rhyme or reason in how they behave, leaving us bewildered. Neurological function remains in many ways the enigma of our times.

I speak from experience. Two years ago, I stubbed my toe. Today, I am fighting for my ability to walk.

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This is not a woe-is-me story. This is a story about round pegs and square holes; the thing that is not easily defined or categorized; the experience that is difficult to describe. In a world full of absolutes, the indeterminate is too often sidelined in favour of clear-cut options.

I have something called Complex Regional Pain Syndrome (CRPS) – otherwise known as Reflex Sympathetic Dystrophy or RSD; in my opinion, a more apt moniker. A neurological disorder, it is typically characterized by a swollen, red shiny limb that feels like it is on fire – on the McGill Pain Index, a pain rated higher than amputation and childbirth. Less talked about is the pathology of the nervous system, likely because it manifests so differently from person to person.

One potential aspect is a loss of GABA – the primary neuron responsible for inhibition. Without it, your sympathetic nervous system gets free reign. Fight or flight. Imagine being chased by a wild animal and you would have some idea of what it feels like to be me. In bad spells, I spend long days trying to calm a pounding heart, aggravated by the slightest exertion, like taking a shower or changing a light bulb. I've forgotten what it feels like to be relaxed.

With so many theories on the cause – some point to an auto-immune link; others to an infection of the vagus nerve, Lyme Disease or a history of injury – symptoms vary widely as well. More common aspects to the disorder include a highly sensitized system and a malfunctioning of the neurons that process touch, movement and temperature. My suffering aside, what intrigues me most are the "sensory illusions" caused by misperceptions in the brain. The carpet under my feet might feel like broken glass or a bed of nails. My skin fries. An ice cold limb to the touch feels ablaze.

What, other than the nervous system, has the ability to produce these oddities? Equally compelling to me is relationship between our nervous systems and our dreams. Since being diagnosed with CRPS I have, on numerous occasions, heard insistent knocks at my door that felt so real I woke up to answer them every time. Or, I will dream of walking normally. And I will never forget the time when, hovering between wake and sleep, I felt someone walking over me on the bed. I was alone in my apartment.

Are these anomalies worth studying? It is my contention that at the very least, doing so bolsters peripheral vision. Neurological phenomena require great scrutiny; an unwavering curiosity that looks for connections and avoids lazy categorization, the likes of which we saw in the late Oliver Sacks. The way I see it, "hard neuroscience" defines a set group of symptoms and assigns them to a box called CRPS, but this disorder falls within the realm of soft neuroscience. It's not Western-medicine friendly. It begs a holistic approach that endeavours to learn from those who have it. Symptom profiles that are hard to explain are prime fodder for breakthroughs in research, if only more time could be taken to interview real people.

Actor Michael J. Fox once wrote that in the early stages of his Parkinson's disease, it was as if his pinkie was possessed and his brain had taken custody of his body. That resonates. In my darkest hours it is as if a tormented ancestor, having lost their mind, has taken up residence in my body. I can't help but wonder how many people with neurological disease relate to what I am saying here. I am interested in the common thread that all neurological disorders share, and the mercurial nature of CRPS can offer significant insight here.

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Treatment for CRPS remains largely experimental and spans numerous modalities. Nerve-block injections and anesthetic IV bags are conventional approaches for pain management but do nothing to reverse it. A woman in Montreal I spoke to found success with long-term antibiotics. There are many more. But, of all the approaches I have read, the one that stuck remains highly controversial. In Britain, prolonged ketamine comas are being induced in a dramatic attempt to reset the nervous system of anguished patients.

While the risks involved are daunting, the idea behind it – a physiological reboot – holds great appeal for me. Is there a way in which current resources can be more safely applied to the same effect? Where the turbulent reigns, this question bodes well.

CRPS is begging for interdisciplinary research, especially in Canada, and mystified minds immune to easy answers. In the realm of the neurological, this is a future that makes sense.

Jessica Mendes lives in Toronto.

This is part of a series about extraordinary experiences in personal health. Share yours at health@globeandmail.com.

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