No, it’s not just pain
A letter from a fellow warrior reminded me of something I’ve been wanting to blog about since last summer. Today was technically my last day in the clinical trial. They were supposed to call me to check once more for adverse events because it’s day 210. Everything happens on a certain date. Day 1 for me was the long and unforgettable intake day when a nurse went over my 3” thick medical record. I could write a book about the ten minutes we spent with the doctor in charge of the facility after we’d been with the nurse three and a half hours. But I’ll just tell you four words of it: “It’s just pain, right?”
Without examining me, reading my chart, or letting me finish speaking, he met me and judged my case. There was no pause for an answer. It was a statement in the form of a question. It was a verdict.
My “answer” has been on the tip of my tongue since then: “No.”
It’s not just pain
No, it’s not just pain. My own chief complaints include disability, six years of almost daily fevers, fear for my kids, and fear of earlier death. Pain from Rheumatoid is dreadful and in its own class. But let’s look at why even the pain itself is not “just pain right.”
But even the pain is not “just pain”
Another day, another patient, another kind of doctor… Here’s the letter.
“My story is happier now. A combination of Enbrel and Plaquenil helped but certainly brought me nowhere near the 70% return of function. My rheumatologist told me that I just wasn’t where he wanted to see me and hoped I would still get. He wanted better things for me. For many reasons, I had been refusing anything specifically targeting the pain, but he convinced me to try a prescription-strength NSAID.
I have a high tolerance for pain and I hadn’t wanted to take anything that would put further stresses on my body. However, once I began taking the medication, things changed. I hadn’t realized how pain was impacting my sleep and how very sleep deprived I was. I hadn’t realized how much energy was sapped while my body coped with the pain, even when I consciously pushed the pain aside. I didn’t know how many activities I was missing because the pain had frozen me and sapped my energy, keeping me in bed for hours each day. I just hadn’t known how the pain was impacting me.
It’s made a tremendous difference. Yes, the more medications I take, the more side effects I might accrue. I’m not back to “normal,” my husband reminds me after a day when we’ve had some hilarious bean-burger and spinach-dip throwing episodes when I tried to cook and ended up slinging food I was trying to lift with a spatula or stir with a spoon. Still, it’s so much better that it is scary, and I’m sure you know what I mean. I’m scared I’ll go back.
I wasn’t being stoic and valiant dealing with the pain without medication. I was being dumb. Needlessly dumb.”
Thanks to M. for letting us print part of her letter. She’s fighting so bravely to get as much of her life back as possible. And her doctor has performed brilliantly. What a wonderful example of how it’s supposed to work and how we can see that pain is not “just pain right.” No.
No, Dr. No, it’s not just pain
Years ago, one of my sons once had an impolite response to dumb questions. If the question didn’t even dignify a “no,” my son said, “N.” Since Day 1, I’ve looked for the right nickname we could use for this fellow, the polar opposite of M.’s good doctor. Maybe someday I can tell you more about it, but it only took 209 days to name him Dr. No.
- More articles about pain tolerance with RA / stoicism
- Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
- RA Reality Versus “The Lie”
- Patient’s Rebuttal to RA Pain Catastrophizing Claims
- Rheumatoid Arthritis Pain in the Twilight Zone