A woman reclining while grabbing her knee. She's looking at it with a magnifying glass trying to decide if her knee is inflamed. Inside the magnifying glass are flames.

Is It RA Yet?

Among those of us who have been “officially” diagnosed with rheumatoid arthritis (RA), there is always discussion about how long it took from the onset of symptoms to get that diagnosis as well as what were those early symptoms?

My early RA symptoms

There seems to be a wide variety of responses to these age-old questions. For me, I started with large joint pain in my hips, then shoulders which are somewhat unusual.1 I did not start with hand and foot inflammation until several months into the onset.

The vast majority of people present with small joint inflammation characterized by redness, swelling, and pain.1 Also unusual, but documented, includes no widespread joint pain but rather fever, fatigue, and general malaise.1

Bloodwork and a delayed diagnosis

Of course, having bloodwork indicators such as a positive rheumatoid factor, high inflammatory markers, etc., can also assist with the diagnosis. But, once again, in as many as 60 percent of folks with RA, the bloodwork does not show definitive changes.1 To this day, my labs are a very poor indicator of disease activity.

Additionally, as many as 25 percent of us (myself included) do not have a positive rheumatoid factor initially or even ever. Mine did not show up until 5 years into the disease.  This just makes the diagnosis that much more elusive in the early stages. So, the clinical examination of our joints by the physician remains the best way to truly discern how widespread the inflammation is.

Experiencing multiple, painful symptoms

That often means that physicians tend to delay or at least use caution in offering up a diagnosis of RA until we are experiencing multiple and painful symptoms. This can take months and, in some cases, years in which we are bounced around from one specialist to another.

The very nature of RA, which is often characterized by “flares” is partially responsible. We may have a flare that lasts a week, a month, or beyond and then subsides. Although we eventually come to understand that this is likely the chaotic nature of RA, it makes a diagnosis that much more challenging.

Be vocal about RA symptoms onset

I consider myself very fortunate to have been referred by my primary care physician (PCP) within three months of the onset of the pain to the correct specialist. 

Initially, I was referred to an orthopedist. But when that went nowhere, my PCP sent me on to a rheumatologist, and, eventually, a diagnosis was made. It can take some time to get into to see the correct specialist and that can be very difficult and frustrating. I was like a dog with a bone, constantly calling the medical office to ask to be put on the waiting list for cancellations and to just reiterate my pain and discomfort. I recommend it, but remember to be respectful because it goes a long way with the staff.

Getting a diagnosis requires patience

There seems, to me, no truly definitive path for the onset of symptoms. It can start with a vengeance or be a slow, persistent rise in discomfort. It can be small joints, large joints, or all the joints. Joints may or may or may not swell and may or may not be red. You may feel generally unwell, run a low-grade fever, have fatigue, “brain fog” or none of those.

Determining if you have RA requires a lot of patience, persistence, and dogged determination. You must be your own best advocate and if you cannot or do not feel well enough to handle it, enlist the support of someone you trust to accompany you and advise you and assist you.

With all of these tools at your disposal, you can get a definitive decision and then move forward with the successful management of RA.

Nan

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