Shoulder pain was my portal into the hellish world of RA. At first, just a wincing pain one morning that I ascribed to holding my arm at a strange angle for my first tattoo the prior evening, or perhaps an echo of the construction work I was doing at the time.

The pain mounted rapidly through the day, way out proportion to any activity I could remember doing recently; a piercing white lance at the back of my shoulder that transfixed me motionless with its intensity, left me gasping whenever I happened to move my arm in the slightest. This was just wrong. All wrong. Never had anything like this in all my falls and over-exertions.

I was no stranger to injury, having grown up in a land of rugby and party fights, and expected to shuck it off in a day or two as I always had. I had a tough and fast healing body that had seen me through many adventures and scrapes, and, as far as I was concerned, another owie was just going to come and go and leave me tougher than before.

As the evening progressed it got worse yet. Even being hit by a speeding car had nothing on this.

A laser of mounting sensation nibbled away at my awareness of the world, pain beyond anything I had ever imagined possible. I was bereft of the capacity to do, well . . . anything. Entering a shock state, I sat in bed, leaning against the wall and holding one arm with the other, my head lolling with unseeing eyes and mouth wide open, drooling at the sheer scale of the physical insult I was enduring. Snuffling down the three Advil my pregnant wife offered, I refused a visit to the Emergency Room because I couldn’t imagine having to move an inch without my world imploding in screams, and deep down am a cheap bastard of Scottish extraction that won’t go to a hospital unless there is more blood than I can staunch.

I did visit the doctor but rheumatoid arthritis was never considered—I can tell you conclusively that shoulder pain, especially if only presented in one shoulder, is far down on the list of diagnostic indicators for RA. The joint is large enough that the inflammation can be hidden and blood tests far from conclusive. If shoulder pain is your entry into this disease, I have only pity for you. Like me, you may well fall through the cracks and have to prevail before finding someone to take your pain seriously. You may have to fight with everything you have left to not give into despair and question your own sanity. To be fair to the doctors, random unspecified pain in a single location is impossible to pin down without some additional pointers.

From my shoulder, my RA then flit through all the major joints in my body, still not symmetrical or in my hands, still no visible swelling or redness or positive blood tests, all of which didn’t help my diagnostic path any until a ‘lucky’ blood test nine years later.

Sixteen years later, and so many flares in that shoulder that the head of my humerus has simply flopped out of the joint after being stretched beyond recovery, I can tell you that very few approaches were available to someone like me suffering shoulder pain as a symptom of RA. Initially, the joint was aspirated to provide fluid for analysis. Upon diagnosis (or in my case, diagnosis failure) doctors seemed to follow a flowchart protocol. Treat for pain (with some hurdles) and inflammation, immobilize with sling and straps, remedy with physiotherapy and ancillary therapies as seen fit. And that will be it until you present some more ‘mainstream’ symptoms that fit into the diagnostic framework. Sorry, pal.

Perhaps one day the diagnostic criteria could be revised and updated to reflect the complexity of the RA spectrum and its’ Hydra-like manifestations. This will more likely happen if we all become fierce, insistent and polite advocates for better diagnoses and treatment.

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