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Posted by on Jun 3, 2016 in Rare disease | 1 comment

Code breaking = A diagnosis (03.06.2016)

Code breaking = A diagnosis (03.06.2016)

It’s impossible to describe the relief – after months of being told that nothing was wrong (and to stop exaggerating!) – of finally having a name for what’s happening to my hand and arm.

For the past few months, it’s as though I’ve lacked the word(s) that would unlock a code or a key; the key to explaining all the bizarre and varied signs and symptoms I’ve had since I fractured my radius (a Colles’ fracture, or broken arm/wrist) on March 3rd.

Despite being told repeatedly – by a specialist physician – that nothing was wrong, I knew that all of these medical issues had to stem from one root cause. It just didn’t make sense to me that these problems could all have started at about the same time, out of the blue, without any connection between them.

In cryptography, you need a key to decode a message. Back in the 1600s, codes were used to try to make handwritten messages secret. If someone didn’t have the decoding key – often a grid or table showing the original letters alongside their replacement letters or symbols – they couldn’t decipher or read the message.

These kinds of handwritten codes were used by diplomats, lovers, military leaders, negotiators, spies, and anyone else with a secret to keep. Secret codes evolved through the years, and are the basis of encryption – privacy protection – for computers, smart phones, and other technical tools.

When I was a child, you could mail in box-tops from some cereal boxes to get a decoder ring by mail, to send coded messages to family and friends. As an adult, I had fun creating and exchanging simple coded messages with my stepson. It’s a great way to get children interested in math, to make it fun.

The movie The Imitation Game (1) is about a huge code-breaking machine, which was built during World War II to crack Nazi codes. Some would argue that battles and wars have been won or lost because of these types of secret codes.

But a code can be as simple as replacing A with 1, then B with 2, and C with 3, all through the alphabet. This is usually called a ‘letter to number code’, with the decoding table like this one. In the standard ‘letter to number code’, shown in this table, ‘diagnosis’ would become ‘4-9-1-7-14-15-19-9-19’:

To make it more complex, you can add a certain number to each letter value. So in a ‘plus 3 letter code’; A is 1 + 3 = 4, B is 2 + 3 = 5, C is 3 + 3 = 6, etc. This is the code that my stepson liked best, and you can create your own by adding any number value to each letter.

For some patients and caregivers, the terms and words used in medicine can seem like a code as well. Even familiar words can be hard to understand, because they’re often used with different meanings by people working in clinics and hospitals.

One example is the phrase “frequent flyer”, which is sometimes used in hospitals to mean something completely different from air travel. I’ll write a post soon, about some of these language ‘codes’ in medicine!

I know from my bioethics background “that patients who are more actively involved in their health care experience better health outcomes” (2). For me, this means – at the very least – having an idea of what’s wrong. It’s hard to be actively involved in treatment when you’re being told that there’s nothing wrong, nothing to treat!

So I felt that having a diagnosis, whatever it was, would be like having a decoder ring. A diagnosis would allow me to find information about the condition, and to try to connect with other people who might be having the same kinds of problems.

Despite having a wonderful marriage, an extended family I could count on (literally across Canada), and lots of friends, I felt very much alone over the past few months; I felt that no one understood what I was going through. I’d say that the pain in my hand and arm felt three times as bad as the original fracture, but no one understood how bad it really was.

Photo of a foggy road through a forest

Photo: Sandra Woods

So what was the diagnosis? It’s a rare disease called ‘Complex Regional Pain Syndrome’ (CRPS), but its old name is often still used. My diagnosis was confirmed by a neuro-anaesthesiologist, who’s now my treating physician. He told me that many physicians (himself included) prefer the old name, which tells them that this disease is a form of dystrophy that involves – and spreads along – the sympathetic nerves.

CRPS or RSD creates neuropathic pain; the same kind of tortuous nerve pain that some terminal cancer patients suffer. This pain, that the disinterested hospital specialist had disregarded and dismissed, is ranked on the globally-recognized ‘McGill Pain Index’ (also called a pain scale) as being more painful than kidney stones, amputation of a finger or toe (without anaesthetic), and even childbirth.

But unlike those types of pain, this neuropathic pain is chronic; it doesn’t go away. And when it does, it often takes years – and may come back at any time. I’ll write a post about the difference between acute and chronic pain soon; I’ve already realized that there’s a lot of confusion about this, even among people working in hospitals!

When I’d described the pain to the specialist as being 3 times worse than the original fracture, it turns out that I was describing it almost perfectly; a fracture is rated as 15 on this 0 to 50 McGill Pain Index, and CRPS/RSD is rated at 46.

Once I had a name for this beast, I started looking into it on my favorite source of medical information; PubMed (3). PubMed is an on-line and searchable treasure trove of medical journal articles*. I’ve already found that this disease presents differently in almost every patient; that patients have different experiences, signs, and symptoms with the same disease.

The symptoms are sometimes attributed to other medical problems (or dismissed), and patients who have trouble explaining their symptoms are sometimes ignored. This is what had happened to me, for several months.

My diagnosis is like a decoder ring; now that I have a name for this rare disease, I can try to find and decode it… And I’ve already been able to connect, on-line, with some other people who have this disease. It’s such a relief to know that I’m not alone in this, and to be able to eChat with people who’re going through – and understand – the same things.


(1) Anderson, L.V. How accurate is The Imitation Game? Slate (The Slate Group LLC, a Graham Holdings Company). 28 Jan 2015. Web:

(2) James, Julia. Patient Engagement. Health Policy Brief: Patient Engagement. Health Affairs. 14 Feb 2014. Web:
(3) National Center for Biotechnology Information (NCBI), at the U.S. National Library of Medicine (NLM), located at the National Institutes of Health (NIH). PubMed Quick Start Guide. Undated. Web:

*On PubMed, even if the article is pay-walled (has to be purchased), there’s usually an abstract or summary available for free.


1 Comment

  1. Really like the cryptography analogy. Making that kind of diagnosis must feel like trying to decode a message, but without a decryption key. Nice post!

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