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Posted by on May 29, 2016 in Rare disease | 0 comments

Undiagnosed (29.05.2016)

Undiagnosed (29.05.2016)

It took almost 3 months to get a diagnosis – of what turned out to be a rare disease – even though my family physician, my physiotherapy team, and I knew that something was seriously wrong. I’d broken my right arm (fractured my radius; a Colles’ fracture) in early March 2016, and within a few weeks it was fairly obvious that my arm and hand were getting worse rather than better.

About 2 weeks after the fracture, symptoms started in the fingertips of my injured arm which were far more swollen than they should have been. First was a terrible burning sensation – that would come and go – as though the tips of my fingers were being blowtorched. When this happened at night, I’d get up and turn on the bathroom light to see whether blisters were forming; it really was that bad.

And I’d occasionally have a different type of pain, as though electrical current – or a shock – was running from almost my shoulder all the way down my arm. Third was a horrid constant pain, in all of the joints of every finger.

I kept telling myself that the pain would go away as the fracture healed, but one night on a weekend I woke up with all 3 of those types of pain at the same time. I called our provincial (Québec) telehealth phone line. “Info-Santé” (I suppose that would translate to Info-Health) connects patients with nurses. The nurse went through her script, no doubt linked to some kind of standard algorithm, with me. After 10 minutes, her suggestion was that I go back to the emergency department of the hospital as the cast might have become too tight due to swelling.

I’d hoped to see the same emergency physician who had set my fracture, but she wasn’t on duty that night. The physician there noted my symptoms and confirmed that my fingers were much more swollen than they should have been more than 10 days after the fracture. She sent me off to radiology for yet another X-ray, and then had a nurse remove my cast and replace it with a slightly looser one.

Before I left, the emergency physician asked me to call the orthopaedic department the next day to schedule another appointment; and to tell them that I’d required emergency treatment. The next available appointment at the outpatient orthopaedic clinic wasn’t until the following week. Although the new cast hadn’t done anything to alleviate the pain, I decided to wait for that appointment. I don’t like to waste healthcare resources, or the time of healthcare professionals, in our taxpayer-funded health system – and the emergency physician hadn’t found anything wrong.

Funny photo of a skeleton looking at an x-ray image

Photo: Brandon Morgan

To say that I was disappointed by the orthopaedic surgeon’s re-evaluation and reaction the following week would be an understatement. He dismissed all of my symptoms, and told me simply that some patients experience more swelling than others; in his opinion all the various types of pain I’d described could be attributed to the swelling. He told me to try to put my fingers in ice up to the cast, and to take NSAIDs (e.g. Tylenol) to help reduce the swelling.

I’d been using the exercise bikes at my gym – my way of dealing with pain and stress is to exercise – so I asked him if I should stop doing that.

He said that exercising was a good idea, as long as I kept the casted arm elevated on the exercise bike; which I’d been doing as it was just too painful not to!  (It was my physiotherapist who told me not to sweat ‘too much’ while exercising, because if the inside of the cast got damp it could start falling apart from the inside out.)

Once again I left the hospital with no answers, no explanation for why my fingers were so swollen and why my hand and arm were so painful. It turned out that I wasn’t going to get a diagnosis today, either…

Photo credit: Brandon Morgan

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