Rheumatoid Arthritis: The Sleep Thief
It was a cool, crisp autumn evening in 2006. We had just settled down to go to sleep when it began. Toss. Turn. Toss. Turn. Toss, turn, toss, turn, toss, turn and then a low cry of frustration and pain.
I looked over at Lisa. “What’s wrong, sweetie?” I asked. “My hands and wrists feel like they are burning,” she responded. “They hurt so much.”
“Let me see them,” I requested. She let me hold both hands in mine. Examining her arms and wrists, I noticed nothing particularly remarkable. But then I scanned her thumb and fingers and saw that they all appeared to be swollen. Gently running my fingers over hers, I could tell that almost all of them felt unusually stiff.
“When did this happen?” I asked her. “I don’t exactly know. I guess it started over the past few days. Maybe as long as a week,” she answered. I could tell very clearly that she was in a great deal of pain. I had to find some way to help her.
I tried what seemed to be the obvious solution first. For 20 minutes or more, I gently massaged each knuckle, the base of her thumbs, and her wrists. As I did so, I would politely and hopefully ask, “Any better?” She usually replied with a grimace, “Maybe a little, but not much. It mostly just feels the same.”
Lisa had begun wearing old splints on her wrists during the past several days and nights as the pain had gotten worse. I tried adjusting them to see if tightening or loosening them might help alleviate the pain. But there was no relief.
We had been trying to make the pain stop for a good for 30-45 minutes. “Maybe apply ice packs? Or try some pain medication?” I offered. “Ice packs probably won’t help. Pain medication might,” she replied.
I was very concerned by now, so I suggested that perhaps we should go to the emergency room. While it was quite late, the problem appeared serious enough that I felt immediate medical attention was the best solution.
Lisa considered the idea, but being Lisa, she said that she would try to grit her way through the night. I acceded to her position but told her very firmly that she should not hesitate to ask me to take her to the emergency room at any time.
I tried massaging her extremities once more, which gave her only fleeting relief. “Thank you, sweetie,” she said. “I’ll try to read for a little while. You try and get some rest. If I think it’s necessary, we’ll go to the emergency room.”
I reluctantly agreed. Come morning, I decided I had to help Lisa find a way to figure out what was going on with her arms and hands. That’s when we talked about her calling the doctor. Finding the answer to the mystery wasn’t easy, however.
First, the neurologist said it was carpal tunnel syndrome and ultimately sent her to a hand surgeon after things didn’t get better. The surgeon took x-rays and injected steroids into her wrists. He discussed surgery but felt it important that Lisa see a rheumatologist before proceeding, which is what Lisa did. A wise decision on her part, for the rheumatologist immediately diagnosed rheumatoid arthritis.
That’s when my care partner role expanded as Lisa was now faced with a life dealing with two progressive, debilitating diseases. Lisa now had MS and RA.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?