The Flat Facts: 1
As of this month, I’ve been living with the pain of rheumatoid arthritis for approximately one year, but have been diagnosed for about six months. The delay in the diagnosis was not because my condition is allusive as it is for so many people. It was because of a doctor to patient ratio problem that has become an epidemic in my area2. But that is a story for another post.
The first six months of the disease followed a very normal trajectory for untreated RA. It started with stiffness and pain in one of my hands, then swelling, then pain in the other hand, then one by one pain and swelling travelled its way around my body one joint at a time. I did not know this was RA or that it was normal. The only thing that I knew was that my body was rapidly becoming more and more painful to the point that I was unable to sleep and every day activities were becoming painful to the point of impossible. The anti-inflammatories that were being prescribed may have been reducing the pain, but given that it was 10+, I didn’t feel relieved. I eventually found a doctor willing to prescribe pain killers3 for the remaining month I had to wait to see a specialist. They helped, but did not cure the pain. They did, however, allow me to finally get some sleep.
The day of my appointment with my specialist finally arrived. I was diagnosed within minutes. Promises were made. Drugs prescribed. Further diagnostics scheduled. It was all very fast and efficient. My head was spinning and I felt relief and a hint of fear that wouldn’t manifest itself completely for weeks. The pain had a name. It was a name I knew well. My mother had been diagnosed at the same age and has responded very well to a variety of treatments over the years. I went home with a handful of scary prescriptions and a useless website url without having asked a single question other than how long until the pain resides? My questions would come later and non-stop. There are very few answers to my questions, surprisingly few answers.
This is how my arthritis story begins.
- DISCLAIMER (because it’s the age we live in…): I am not a doctor. I AM A PATIENT. What you find in this section is a first person account of what I am experiencing in my own journey. I’m writing it to help myself and I offer it to the world in case my journey can help yours. -J.L. Munn
- There is a shortage of general practitioners and specialists in certain areas of Québec that resulted in 4+ months of living hell waiting to be diagnosed and treated. I was lucky that it was only around a 4 month wait. The portion that is pertinent for today’s post is simply that I lived with level 10+ pain during that wait.
- I plan to go into this topic later. Pain killers are a surprisingly touchy subject for doctors today, which resulted in my inability to get even a low dose to help me through the worst moments.