four people working to create a wholistic view of an RA patients symptoms

It Takes a Village

I just lay there, at a complete loss of what to do.

"DAAAD!" At least my voice worked.

"DAD!! HELP!"

I am a pretty quiet person so the fact I was yelling first thing in the morning meant there was something very wrong. My father came running.

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"I can't move!"

"What do you mean, you can't move??" A note of panic entered his voice.

"Everything hurts. I can't move. I'm not paralyzed but I'm in too much pain to move."

This was the day, in June 2010, my Rheumatoid Arthritis flared for the first time.

The start of my RA journey

I had been experiencing pain for a while but the magnitude of this flare was new to me. About six months prior, I experienced an inflammatory injury in the wrist. I had surgery and physical therapy to correct it but soon other joints began to pain. At first, we thought the elbow and shoulder were compensating for the weaker wrist but I experienced pain on the other side of my body. My orthopedic surgeon referred me to a rheumatologist (who sucked)...

It was 9 o'clock on a Sunday morning and my father called the only other rheumatologist we knew (who is my current doctor). He didn’t see me but he immediately ordered a prescription for Prednisone and told us to come into the office first thing the next day.

With that, I was officially diagnosed with Rheumatoid Arthritis. I was now labeled and began my story with this autoimmune condition. That was that, I thought. Wrong. That was certainly not ‘that’.

Assembling a RA healthcare team

Soon, I was seeing more specialists than I could track. I found out quickly RA did not just only affect my joints. Weird phenomena (like ulcers or eye discomfort) cropped up as my condition warred on. I couldn’t just rely on my rheumatologist. While he is an extremely knowledgeable man, there were symptoms and factors that only a specialist (in whatever field) could make sense and treat accordingly.

Often times, specialists are quite specific and pigeon-holed in their field (not always!!). I am very lucky that all my doctors look at the big picture. We go over all my symptoms, even the ones that would not necessarily concern them, all my medications and all the other specialists I’m seeing. They look at all the information then formulate their plan. For example, my ENT surgeon reminded me that because of the RA, my turbinate bone in my nose will continuously swell and I would need more frequent scrapings to keep my nasal passages open.

RA requires full-body attention

Autoimmune conditions each have a set of distinct symptoms that separate them. However, as I’m sure you’re well aware, any inflammatory condition does not just affect one part of the body. It’s like asking the grass to grow in one small patch instead of the whole lawn: impossible. RA is a full body sport.

It takes a village to work out this thing we call Rheumatoid Arthritis and, hopefully, each of our doctors listens and treats accordingly and not the single symptom itself.

How many specialists do you see? Do they all work together? Let me know in the comments!

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