RheumaBlog

Same dragon, different day.

Today is World Arthritis Day. The theme for this year is “Move to Improve,” words that anyone who copes with rheumatoid arthritis knows the wisdom of. We move not only to maintain the strength and flexibility of our compromised joints, but to improve and maintain our physical and mental health as well.

There are many types of arthritis, including osteoarthritis, psoriatic arthritis, juvenile ideopathic/rheumatoid arthritis, infective arthritis, polyarthritis… the list goes on and on. Each of these forms of arthritis are painful and can be debilitating and disabling. Today we recognize the many, many millions of people who cope each day of their lives with arthritis and the importance of finding a cure for many types of it, including rheumatoid arthritis.

That last might be better named “autoimmune arthritis,” since it’s a disease caused by the body’s immune system attacking its own tissues.

What follows is my rheumatoid arthritis onset story, part of the IAAM World Arthritis Day Blog Event:

It started with the various parts of me I “slept wrong” on. One day it would be a shoulder, the next a wrist, another day an ankle or a couple of fingers. In those first months the pain wasn’t as bad as it would shortly become, but bad enough. Sometimes I needed help slipping a shirt over my shoulders. Sometimes writing with a pen or typing would be very uncomfortable. Because the pain would be there when I woke up  in the morning, naturally I thought I’d “slept wrong” on the offending joint, the way you can wake up sometimes with a stiff neck …

That never happened to you? Hmmm…

During the next six months the “slept wrong” pains increased in frequency. I wondered how in the world I managed to hurt myself so often. I really was that credulous; there really wasn’t any other explanation, as far as I could tell.  But I hadn’t injured myself. I hadn’t stubbed that miserably sore toe, or wrenched that aching shoulder, or jammed that painful pointer finger. “Slept wrong” was all I could think of to explain it because, well, I was just 30 years old. I’d never been sick. Oh, sure, I’d had the typical childhood illnesses—measles, mumps, chicken pox, colds, the flu. When I was 7, I’d had my tonsils taken out. As a teen-ager, I’d had a scary bout with pneumonia, but recovered without incident, and as a young adult I’d had a ganglion cyst surgically removed from my right wrist. No big deal. A couple of years later I’d given birth to my daughter using the Lamaze natural childbirth method of breathing for pain control rather than anesthesia. I was young, strong, vibrant and healthy, an American living in Northern Germany, working as a civilian for the U.S. Army, Europe.

Time passed. The “slept wrong” incidents were far enough apart in the beginning that I didn’t connect them, but then my feet started hurting. And not just now and then, but nearly every day. I’d wake up in the morning, swing my feet out of bed, touch them to the floor and yelp, because the mere touch was so shockingly painful it ripped a cry out of me. My feet felt like I’d been standing on them all night long without a break, the way they used to feel when, as a teen-ager, I’d worked at a fast-food restaurant and stood taking hamburger orders for 10-hour shifts. But back then, I recovered easily after a good night’s sleep. Now, my feet were killing me, and nothing I did could make them get better. They felt like someone had been beating them with bamboo sticks all night. I’d get up and hobble from bed to the shower, wimpering. I’d hobble on to work and keep hobbling around all day. When I got home in the evening I’d soak my dreadful feet in a hot bath, gritting my teeth and wondering what in the world I’d done to make them hurt so much. Were my shoes too tight? The heels too high? Were the soles not padded enough?

No, no and no.

At the same time, the incidents of pain and stiffness in my other joints became more frequent. They also moved into my knees and ankles. It was always one joint at a time. My right shoulder one day, my left knee the next. The pain got worse, to the point that it started disabling me. It started lasting longer, sometimes for two or three days at a time, and it would go away just the same way it would start: suddenly, without warning and for no discernable reason. Finally, bewildered and getting frightened, I made an appointment with the doctor. It was the first time since moving to Germany I’d gone to see him.

I told the doc about my feet. I told him about my shoulders and fingers, knees and toes, and how the pain would hit different joints on both sides of my body, one day here, one day there. He was non-committal, but sent me to the lab for a blood test and told me to come back in a week.

When I went back to see him, my doctor told me they’d found something called the “rh factor” in my blood. That, along with the symptoms I’d described, indicated that I had rheumatoid arthritis. He told me a little about it—that RA is an autoimmune disease, that it could someday disable me permanently, and that it’s incurable. He started me on a regimen of high-dose aspirin and sent me on my way. It was the first of many appointments with this same doctor.

That was in 1987. Honestly, I can hardly remember now how I reacted to the news. I wasn’t horrified or frightened—I didn’t know enough about the disease yet to be either.  I was a bit confused: I’d always thought that arthritis was the disease of creaky, sore joints that old people got. At 30, I was a long way from old. In time, I learned that what I was thinking of was osteoarthritis, not rheumatoid arthritis, and that the two weren’t interchangeable. I began facing the first of many years worth of the phrases, “You have arthritis? Oh, my grandmother has that, too.” Or, “But you’re too young!”

There’s so much I didn’t know about RA during the first decade after I was diagnosed. For instance, I thought that I was exhausted so frequently because I worked at a job ten hours a day, then grocery shopped, cooked dinner, did laundry, took care of my husband’s and small daughter’s needs, and walked the dog, all while dealing with a flared foot or knee or shoulder and the pain and disablement that went with it, all that in a single workday and repeated five days a week. Who wouldn’t be tired?

But I didn’t know that my fatigue was one of the symptoms of the disease. I didn’t know that RA could affect the soft tissues of my body as well as my joints: my heart, my eyes, my veins, my ligaments. I didn’t know about the complications and co-morbidities of RA, like tendinitis and bursitis. It’s probably a blessing that I didn’t, now I think of it.

I didn’t know anything about the drugs used to treat RA at the time. My doctor prescribed NSAIDs exclusively for the first year after diagnosis; then tried a series of DMARDs, including oral gold and plaquenil. None of them had any effect at all on my RA. The only relief I ever got was from prescription narcotics. Thank goodness for the gentle god Morphine.

During those early years my RA got much worse. I would have two or three flares a week lasting anywhere from twelve hours to three days at a time. They were all painful; once in a while, they were so bad that they disabled me completely, so that I’d have to call in to work sick. When I look back at those years I really don’t know how I did it, remembering as I do the climb up the stairs to our third floor flat; the walks I took with the dog while limping so badly I cried; the times I drove my manual transmission car with a flared right hand or left foot, whimpering with pain each time I needed to shift gears and praying I wouldn’t need to stop fast. I remember standing in the long grocery lines at the commissary, shifting from foot to foot because both feet hurt so bad it was all I could do to keep from moaning out loud. And I remember the relief I felt after a long, painful day at work, when I came home, put my daughter to bed and was finally able to take a narcotic pain pill, something I’d waited to take until everything people relied on me to do for the day was done.

*****

About RA and obesity: Recently, a certain television doctor/entertainer said, on the air, that obesity causes rheumatoid arthritis.

He was flat-out wrong.

Obesity might be the cause of many ills, including diabetes and heart problems, but rheumatoid arthritis is an autoimmune disease that has nothing to do with body weight. Medical science doesn’t know what causes RA.

Now, it’s possible that the TV doctor/entertainer meant to say “osteoarthritis.” If he did, he might have been right. Osteoarthritis is a degenerative arthritis, caused by wear and tear on the joints. Excess weight puts a great deal of strain on the joints of the lower body. While it’s usually associated with people in their 50s or older, osteoarthritis can occur in younger adults, too, particularly those who are overweight or obese.

Rheumatoid arthritis isn’t caused by obesity, but obesity can make rheumatoid arthritis worse in those who have it because of the strain it puts on the joints. People with RA are better off if they can keep their weight at a “normal” level for their age, height and build. Staying “fighting fit” keeps the muscles that support the joints strong, maintains the joints’ range of motion and flexibility, and makes people healthier overall. It’s a win-win situation.

The TV doctor has not, so far, corrected his mistake publicly, on the air or otherwise. It would be nice if he would, because he has misinformed thousands, if not millions, of viewers regarding rheumatoid arthritis. Those of us who cope with this disease would sure appreciate it if he’d make this right, because we didn’t do anything to bring RA on ourselves.

The fact is, RA can strike anyone—thin, fat, fit, flabby, young, old or in between, male and female, black or white or red or yellow. Rheumatoid arthritis doesn’t discriminate. It’s not a form of penance. It’s not a punishment or just desserts. It just is.

When I was diagnosed with RA I was 31 years old. At 5 feet and 4 inches tall, I weighed 130 pounds. I wasn’t an athlete, but I was strong, fit and healthy. Today, at almost 55 years old, I’m not as fit and I weigh 50 pounds more, but I didn’t gain that weight because of RA. I’ve remained active in spite of the disease. I gained weight because I over-ate, and because I ate foods that weren’t very good for me. I gained weight because my job had me sitting behind a desk most of the time. In the last four years I’ve lost an additional 50 pounds—and that didn’t happen because of RA, either. I lost that weight because I started eating healthy foods in healthy portions and started moving more—because of my RA, and in spite of it.

*****

My story, and my rheumatoid arthritis, is ongoing. I know far more about the disease today than I did even five years ago, thanks to the Internet and the new world the online RA community opened for me when I started blogging. I’m thankful that the RA I have right now is less painful and intense than it was during the first ten years after onset, and I’m thankful for the six-year remission I enjoyed. But it came back. The one thing about RA you can depend on is that it will change–today, tomorrow, next year.

I have far more hope now than I used to, though. There are many new medications available–the biologics, like Humira and Remicade and Enbrel–to treat rheumatoid arthritis than there were in the late 80s and early 90s. Though none of them can cure RA, these medications offer all of us who cope with this disease a chance to slow or stop its progress and a better chance at remission than we’d have without them. And today we know how important it is to exercise, to eat a healthy diet and to care for ourselves mentally and spiritually as well as physically.

If you’re reading this, you’re also experiencing the unique support, education and advocacy available for and about RA through the online community. It’s one of the best things I’ve found yet to help me cope with the day-to-day challenge of living well with rheumatoid arthritis.

UPDATE: As part of a blogpost on his website regarding World Arthritis Day, Dr. Phil has issued a correction to his recent remark about obesity and RA. Read it here.

What’s your RA onset story? In honor of World Arthritis Day, share it in comments. I’d love to read it!

5 thoughts on “World Arthritis Day: My onset story

  1. WarmSocks says:

    Excellent post, Wren! Your writing is captivating. I’m glad to hear that your treatments are now working. May they continue to provide you relief.

    Like

  2. Thrive with RA™ says:

    Thank you Wren for sharing with the world the reality of Rheumatoid Arthritis. Your words are empowering, as well as educational.

    I am sorry that you have RA. I am sorry that I have RA; however, I am very happy and grateful to share in this RA Community with you. 🙂

    Like

  3. adrienne says:

    Thanks Wren for sharing your story. Your writing is powerful and wonderful. Keep educating all those that read your posts.

    Like

  4. Mandy says:

    Wonderful post! Thanks for sharing!

    Like

  5. Leigh says:

    Great post. Thanks. I slept wrong for a few years too, but forgot that until I read your wonderful post.

    Like

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