Wren meets the rheuma-dragon

February, 1987:

I thought I’d “slept wrong.” I’d wakened that morning with an inexplicably sore right shoulder. I hadn’t injured it—I’d done nothing that could possibly injure a shoulder, and it was fine when I went to bed the night before—so I figured I must have slept on it wrong for hours.

Or something.

That was the only reason that my right shoulder could be so sore. (And it was pretty lame, as explanations go.) I had trouble washing my hair in the shower, trouble drying it and putting my makeup on, and trouble getting dressed. The shoulder hurt appallinshoulder-paingly when I moved it. I could barely raise my arm above my waist.

To make matters worse, I was in a rush. I had to catch a train to Frankfurt, a six-hour, north-to-south ride down the middle of West Germany, something I’d never done before. To add insult to injury, I also had to carry a suitcase (the old kind with no wheels or extendible handles), a carry-on shoulder bag, and my purse. Under normal circumstances, lugging all that stuff would be a hassle, no more. But with my shoulder so sore that even walking made me wince … well, let’s just say I wasn’t looking forward to the experience.

And all because I’d “slept wrong.”

Over the next six months I somehow “slept wrong” on the other shoulder several times, too. I “slept wrong” on both my hands. I also somehow hurt both my knees without realizing it.

THE FAMOUS Holstentor Lübeck in northern Germany near the Baltic Sea. It once formed the gate to the city.

THE FAMOUS Holstentor Lübeck in northern Germany near the Baltic Sea. It once formed the gate to the city.

And then there was the long weekend in the Baltic harbor city of Lübeck, near the East German border, that was ruined by this strange pain. My husband and I drove northeast from Bremerhaven, headed for the old city near the sea. We arrived in the late afternoon and decided to do a little wandering before finding a restaurant for dinner (for which we’d dressed up a bit).  We’d walked all of two blocks when my feet began to hurt. Within minutes, the right foot was so bad—and swollen—that I could barely put my weight down on it. The left foot simply ached sharply, as if I’d been standing on it all day. (I hadn’t been, of course. I’d been in the car, enjoying the north-German countryside.)

We went ahead and ate a fine meal at a magnificent, old restaurant, but I was in so much pain I didn’t enjoy it much. And the next morning, even though I’d rested all night and wore my good ol’, cushiony walking shoes, my feet still hurt so much that wandering the old city on foot was out of the question. We didn’t want to spend the weekend sitting in our hotel room, so we went back home. The pain vanished by the middle of the following day, just as quickly and mysteriously as it started.

I blamed the whole fiasco on a new pair of neat, pretty, low-heeled black patentblack patent pumps leather pumps I’d purchased just for the trip. I swore I’d never, ever wear new shoes for walking again. Whatever had I been thinking of? What a silly goose!

A week later it happened again. As before, both feet were involved, but this time it was my left foot that was so horrendously painful—and I wasn’t wearing new shoes. I was completely mystified. And it sounds weird, but I finally associated this freaky foot pain with the freaky shoulder pain, the freaky hand pain, and the freaky knee pain I’d been plagued with, off and on, for six months.

I made a doctor appointment.

He agreed that something was going on. So, he wrapped my swollen left foot in an ace bandage, then got me a cane and showed me how to use it.  He told me to take a couple of days off work, staying off my feet as much as I could, alternating ice packs and a heating pad. He prescribed Tylenol with codeine for the pain. (I’d already tried both aspirin and regular Tylenol, without relief.) Finally, he told me to go to the lab for a blood test and come back in three days for a follow-up appointment.

What he didn’t do was speculate.

blood drawWhen I saw him again, he had the answer. My blood test showed a high sedimentation rate, which indicated systemic inflammation. In addition, they’d found a protein antibody in my blood called the Rh factor. Both of those, along with my recent history of mystery pain and stiffness in various, symmetric joints, indicated that I had rheumatoid arthritis, an autoimmune disease.

The doctor asked if I had stiffness when I got up in the morning. Yes, now that I thought about it, I did—even when there was no significant pain. Most of the time the hot shower I took every morning helped to relieve it. By the time I got to work two hours later, it was usually gone. He nodded. That, too, pointed to RA.

And thus started my long, frequently rocky relationship with rheumatoidblack-dragon-sinister-evil arthritis—my “rheuma-dragon,” as I call it. We’re still together today.

But in some ways, I’ve been lucky. I’ve rarely felt the crushing fatigue and “flu-like” illness and fever that many people with RA frequently experience. And in spite of our 25-year relationship, my rheuma-dragon hasn’t deformed my fingers and hands or destroyed any of my larger joints. (Not that he hasn’t tried!) My RA has never caused me to lose weight or become anemic, either. Instead, I’ve slowly gained weight over the years. That’s mainly because I’ve often been reluctant to exercise, afraid of triggering a flare.

So. That’s my RA onset story. To learn more about the early signs of rheumatoid arthritis, check out this Healthline slideshow. It’s both concise and informative.

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5 responses to “Wren meets the rheuma-dragon

  1. It’s interesting how that old dragon courts us at first — taking a little nibble here and a little taste there — before becoming a permanent bedfellow. (I prefer bedfellows with warm feet who don’t keep me awake! Mr. Rheuma Dragon has neither attribute!)

    • He sure doesn’t. RA is such a strange disease, the way it can be subtle at times, yet thoroughly color everything you do.

      Hope you’re feeling well, Carla. How’s that Texas autumn?

  2. Remicade Dream

    Your onset story sounds almost exactly like mine. I remember waking up with my shoulder in agony, unable to lift my arm, because I had somehow “slept wrong.” And I can’t even tell you how many pairs of special insoles I bought and discarded because of those darn shoes that MUST have been the problem, even though they were flats and were a “comfort” brand! What else could explain the feeling that there were marbles under the balls of my feet, or the way a short walk could leave me limping?

    • Marbles! That’s exactly the description! That foot pain became pain I had every single day, with or without a worse flare in a larger joint. I’d get out of bed and mince my way to the bathroom in the morning, trying not to put any weight on my feet. It only rarely happens now, and I am thankful.

      I hope you’re feeling better these days, and that your “dragon” is slow and sleepy. Take care. :)

  3. Funny that you also give RA the male gender. I see it as a he, as well. I haven’t had RA as long as you, or all the painful joints that you’ve encountered, but I have been cursed with that foggy fatigue. And at present my right foot is killing me! I am so tempted to blame RA!