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Painful Patches: Rheumatoid Arthritis

March 17, 2017
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        I have a lot of beautiful patches and a few painful ones. My newest painful patch is rheumatoid arthritis.

For me, recognizing I had RA is like the anecdote of a frog in a pot of water. As the story goes, if you put a frog in a pan of room temperature water, you can slowly increase the water temperature without the frog realizing it. Basically, the frog remains oblivious and never recognizes the dangerous situation.

About 14 years ago, for several weeks I woke up every morning with both of my hands hurting. I cried. I remembered the picture of my great-grandmother’s RA deformed hands and cried even more. I was sure I had RA.

When I went to the doctor, he did a RF test. “Good news,” he said. “It’s negative.” For him, it was the end of discussion. He diagnosed it as a virus. It didn’t sound right to me, but he was the expert so I accepted what he said. I wanted to believe I didn’t have RA. After a few weeks, my hands stopped aching and I moved on, oblivious.

Not long after my hands had been hurting, I had periodic inflammation of the white of my eyes: scleritis (often caused by RA). It was odd. I went to see an ophthalmologist  where I was asked about other medical conditions. I didn’t have any that I knew of. He said not to worry about it and prescribed an anti-inflammatory eye drop.

Throughout this same period, I was perpetually complaining of fatigue at the doctor’s office. They ordered a sleep study. No problems. They checked my thyroid more times than I can remember. No problem. The tests were always negative. It made me feel like a hypochondriac. I stopped mentioning it.

Of course, I also had random pains. My hands were stiff in the mornings but not painful. By now, I was in my late 30s. I figured I was experiencing the normal aches and pains of aging. However, my right pinky finger hurt at the joint closest to the nail. I couldn’t stand anything to touch the joint.  My feet would hurt but I rarely said anything because I thought it was related to being overweight.

I noticed my pinky finger started to look wonky (a technical medical term). Basically, the joint closest to the nail could not straighten out and the middle joint caved in instead of being straight. I mentioned it to my doctor and she told me I had broken the joint at some point. I didn’t think I had broken it, but I accepted it and moved on, oblivious.

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 Towards the end of 2015, hands were starting to bother me enough that I was paying attention. My ring finger on my right hand was starting to deform. I mentioned it to the doctor. She said it was osteoarthritis, and there wasn’t anything they could do. So, I brushed it aside.

 In March of 2016, I was visiting my sister in SC. We were sitting around talking. After about an hour, Amanda interrupted me and asked me if I could straighten out my pinkies or was I bending them on purpose. I laughed and told her that the doctor said I must have broken the right one at some time. (Now, I have broken a toe before and I promise you that I noticed breaking it. It hurt!). She said that she doubted that I would have broke it and not noticed but that did not account for the deformity starting in the left hand. She also pointed out the obvious swelling of the knuckles in both hands. Oblivious.

I knew my hands hurt, but I was holding on tight to that negative RF test from years ago. Little did I know that approximately 30% of people with RA have a negative RF.

I made the appointment with my doctor. The first two knuckle joints on both hands were so swollen you could not even see them. Both of my pinky fingers were deformed as well as the ring finger on my right hand. She did a round of tests.

Again, my RF was negative; however, she also ran a anti-CCP which was positive. She contacted me and asked me if I wanted to see a rheumatologist because the CCP has a false positive rate of 15%. I looked at my deformed fingers, recognizing the constant ache in them, the ache in my elbows, the stabbing pains in my feet; it wasn’t a question for me. I had no doubt that I had RA. I had woken up from my oblivion.

I told her I wanted the referral.

People ask me how long I have had RA. I tell them 14 years. However, I wasn’t officially diagnosed until June 24, 2016, just 9 months ago.

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