Rheumatoid arthritis (RA) is a consuming disease.  My form of RA, diagnosed at age one as juvenile rheumatoid arthritis (JRA), comes with a typical set of side problems, including iritis.  Then there are the problems triggered by the medication I take to treat RA, including a weakened immune system, which renders a cold or stomach virus, or even a bug bite, a mini-disaster.  With each passing
year, I pick up new RA symptoms, because there are no limits to how this disease seeps into previously untouched parts of my life.

Even though my RA is a roller coaster, it’s my roller coaster, and I know it well.  I can feel a flare coming even if I don’t know how bad it will be or how long it will last.  And I know the pain of RA so well that I know when a new pain is not RA-related.

RA throbs, like a dull poison spreading throughout each affected joint.  The difference between RA pain and non-RA pain is often subtle, and though I may grasp the fine distinction, it can be difficult to convince doctors that some new pain is, in fact, not RA.  Reporting how bad a new pain is doesn’t help my doctors understand what might be going on.  My pain tolerance is so high that other pains pale in comparison.  A doctor might be able to diagnose a broken bone in a patient who doesn’t suffer chronic pain because that patient will continue to complain about the pain the broken bone has caused.  Not so for the RA patient, whose broken bone may result in pain similar to what she already experiences with RA.  That is, just another day in RA land.

As a result, pain that isn’t RA is often misdiagnosed as “just RA,” with dire consequences for people like me.

During the summer of 2009, I was feeling relatively healthy, and decided to work out with a trainer to push my body in new ways.  There were many things the trainer and I decided I could not do, including sprinting and other running-based exercises.  But he had me hopping and jumping and lunging all over the YMCA, twice a week.  And I was doing it!  I was getting stronger and leaner.  During one of my final sessions, in the  middle of some pretty easygoing jumping jacks, something I’d done often with this trainer, I landed slightly off balance on my left foot and felt a twinge right above my ankle.

I stopped the workout, but didn’t think too much of it.  I wanted to rest my ankle, so I cancelled the remaining trainer sessions.  Still, I departed for a two-week vacation to Mexico with nothing more than a brace.  I gave little thought to the increasingly sharp pain in this new place that had never really giving me RA-like trouble before.  It just wasn’t that bad compared to my swollen knee.  I felt well enough to hike up the very steep Tepozteco hill in Tepoztlan, Mexico—a climb that took about two hours.  Going down was much harder than going up, but again, nothing new.

Back home from my trip, my ankle was getting worse.  One month post-jumping jack, I reported the pain to my rheumatologist during an office visit.  She examined my ankle and diagnosed the problem as RA-related inflammation.  I insisted that it felt very different from anything RA had caused in the past, and that the pain was located above, and not inside, my joint, which itself wasn’t hot or swollen.  Still, she insisted it was a new RA manifestation.

One month after that, I called her again and explained that the pain was only getting worse.  She ordered an x-ray, which showed nothing, and again proclaimed it to be “just RA.”

Three months after the incident that triggered all of the pain, I was limping into work, couldn’t put weight on my ankle without wincing, and was short on patience.  My rheumatologist continued to insist that it wasn’t anything serious, because if it was, I wouldn’t be able to walk on it.

At this point, I asked the doctor to order an MRI even she wanted me to wait out the pain for a while longer.  I had the test on a Thursday.  On Friday afternoon, the doctor left me a voicemail telling me that she’d received the results and would try me again on Monday.

“Oh thank God,” I thought.  “If it were a break or something worse she’d have told me.”

Wrong again.  It was a stress fracture after all.  And my rheumatologist had decided that that information, that I had a broken bone, wasn’t worth leaving on my voicemail.  Not only had she let me hobble around misdiagnosed for three months, when she finally had the answer, she waited to tell me.

The recovery took about a year.  I wonder what might have happened if the MRI had been ordered the first time I complained of this strange new pain, or even after the x-ray showed nothing.  What would I have been saved if she’d properly diagnosed me sooner than three months after my injury?  It’s hard to say.  But it sends this lawyer’s mind racing.

Unfortunately this isn’t the only non-RA injury of mine improperly pushed under the RA umbrella.  A pinched nerve in my neck was misdiagnosed as RA pain for two years before I once again asked for an MRI, which revealed the injury for what it really was.

What have I learned from all this?  Well, I know my body better than anyone. I know the difference between RA and something new.  And I’ve learned that I can’t trust my rheumatologists.  I’m the one who has to remain vigilant—no one else is really paying attention.