Sometimes Arthritis Can Be Just Swell
I was sitting in the examine room waiting for the rheumatologist to come in. I felt antsy, as making the hour-long drive each way and enduring the lengthy wait to see the doctor took up a large portion of my day, and on that particular Thursday I felt that my three-month check-up wasn’t really necessary. I had been feeling remarkably well. Filling out the office questionnaires, I had felt happy in reflecting that my pain had only been a two on the ten-point scale, I didn’t need to use all three of the spaces provided in the “major current concerns” section, and I didn’t have to circle many joints on the little stick figure diagrams used to indicate where I was having problems. Expecting a quick exam, I was ready to get on with the rest of my day. When my rheumatologist finally came in and asked how I’d been doing, I joyfully stated that I was doing really well. I was anticipating that she would be as happy about my current state as I was. Yet, when she began her exam, her brow furrowed in concern. She asked, “How long have you had this much swelling?” I had a hard time answering that question, because while I had noticed a little swelling, I wasn’t in pain and morning stiffness wasn’t a major problem, so I hadn’t paid it much mind. I responded with something along the lines of, “I’m not sure, because it’s not that bad, right?”
My rheumatologist then launched into a discussion about how it is swelling, and not pain, that leads to joint deterioration over time. Obviously pain is at the forefront of a patient’s concerns, but she explained that pain may or may not be indicative of future joint damage, but swelling does increase the likelihood of degeneration. Instead of leaving a short appointment feeling great, I left a long appointment, feeling dejected and with a prescription for a dose pack of methylprednisolone.
Another one of these moments occurred a few years ago as I was standing in front of the mirror pulling my hair up into a ponytail. Out of the corner of my eye I noticed that my elbow looked strange, and in examining it I saw that it had a large, lumpy mass with the consistency of jelly. My elbow wasn’t even particularly painful, and it wasn’t affecting my range of motion, but it had swollen larger than it had ever been before. I wouldn’t have even noticed it had I not chosen to put my hair in a ponytail that day, yet when I called my rheumatologist and answered a series of questions regarding the size and feel of my elbow, I ended up with yet another dose pack prescription.
These are just a couple of the experiences that leave me exasperated at how fickle RA can be. It is impossible to accurately predict when it will flare, which parts of the body it will affect, and sometimes it’s even hard to self-assess the disease activity itself, even after completing rheumatologist questionnaires. One would think that pain and swelling caused by an inflammatory condition would go hand-in-hand. Yet, my own hands have shown me this isn’t the case. Sometimes the pain in my joints is commensurate with the level of swelling; other times I have intense discomfort with only mild swelling; and there are times when my fingers are so swollen the skin splits, yet these tears hurt worse than the joints themselves. Reflecting on this, and then thinking about how all of this is caused by my own misguided immune system, I’m left wondering, “Does anything about this disease make sense?” It sure doesn’t make sense to me, and I just hope that it will begin to make more and more sense to the researchers who study the disease in pursuit of better treatments, and ultimately, a cure.
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