I saw my rheumatologist this last Saturday morning. (Have I mentioned how I appreciate these weekend appointments? They’re less crowded, less hurried, and all-around less stressful than the usual weekday appointments. Yay, VA!) This was one I’d made between my usual once-a-quarter appointments. The constant pain from my hip bursitis (caused by my RA) has increased slowly and inexorably in spite of physical therapy, stretching exercises, multiple treatments involving both oral and injected steroids, and daily painkillers. My sleep is frequently interrupted because of the intense ache in both hips. The medication my rheumy prescribed to mitigate that problem hasn’t worked.
As a result, I have lovely dark bags beneath my bloodshot eyes and a growing crankiness and pessimism I don’t admire in myself. My next regular appointment was to be in December. I decided I simply couldn’t wait that long.
I had three main requests of my doctor. First, I wanted to try another, longer prednisolone taper, since that had worked once to quell the pain, even if it was temporary. That works for me, I reasoned, as long as I can take another taper when the pain returns. And another. And another…
To my dismay, my doc said no. I was diagnosed with osteopenia following a Dexascan (bone scan) two years ago. I had another scan in August. I hadn’t been told the results yet, but my doc remedied that on Saturday. I now have osteoporosis (!!). Because a side-effect of steroid medications is bone-thinning, he doesn’t want me taking any more of the stuff. It’s a reasonable decision, and I agree with it. But I was disappointing anyway. The only thing I’d done that actually had a real effect on my bursitis was now permanently off the list. Sigh.
So, I now get to take yet another medication: a biphosphonate once a week to treat and help strengthen my rapidly thinning bones. And, instead of steroids, my doctor is referring me to orthopedics for another opinion on what to do about this recalcitrant trochanteric bursitis. I have now “failed” steroids and physical therapy. Might as well “fail” orthopedics, too, the gloomy pessimist in my head remarks. I hate thinking that way, so I’m trying to simply be patient as I follow this twisting roadmap toward less pain and better health.
The second thing I wanted to ask my rheumatologist was for better pain medication, or at least, a higher dose of what I’m already taking. Like most people who take narcotic pain meds frequently, my body has grown so accustomed to them that they no longer have much appreciable ability to reduce my pain. This isn’t addiction. It’s called tolerance. I don’t abuse these drugs or take them when I’m not in pain simply for the high. The fact is, they don’t make me high anymore, but at an appropriate dose, they do reduce my pain.
To my relief, my rheumy said “yes” to this request.
Finally, I asked him to re-evaluate the medication I’m taking as a sleep-aid, nortriptyline. It’s actually an anti-depressant, but it’s frequently used because two of its side-effects are drowsiness and pain reduction. I’ve been taking this med for close to a year now, with my doc increasing the dosage I take by 25 milligrams with each subsequent appointment. It simply hasn’t worked.
This time he increased it by 25 milligrams yet again. He told me he’s reluctant to put me on other types of sleep aids, as this one, nortriptyline, is the safest one I can take. I was disappointed, but it’s hard to argue with a doctor who’s so obviously concerned about your safety. And, as with the nixed steroids, my internal pessimist piped up in my head again. “Yeah, we’ve already tried increasing the dosage, doc. Hasn’t worked. Why bother? Why not something else?” I’m trying to ignore that negative voice. Maybe this increase will be the answer.
I left the appointment satisfied. My doctor took extra time with me—nearly a half-hour—and evaluated my RA progress along with dealing with the bursitis. He checked my hands, which are always tender and achy, and noted the lack of synovial swelling. He asked me about morning stiffness and flares. While I’ve had both, they fit within the “under control” category, so he made no changes to the cocktail of Arava, plaquinil and sulfasalazine I take each day. He also checked the range of motion in both hips, which is still acceptable, and had me lie on each side as he rechecked the intensity of my bursitis, pressing the diagnostic pressure points gently. I nearly came off the table with each touch. He explained, again, that the bursae have practically no blood supply, so taking medications by mouth is inefficient, mostly a wasted effort. He talked about the iliotibial band, a long ligament that stretches from the hip down the outside of the thigh to the knee. When the bursae beneath the band are inflamed, it rubs on them, and the friction causes pain. Exercising that band stretches it out some, which can help relieve the pain, but in some cases it doesn’t. That’s where I am now. My doc said that an orthopedic specialist might have other treatments for the problem, so it would be worth a consult.
He was kind. He listened. He gave me his time and his compassion, he was obviously interested in the problem, and he made another real effort to help me resolve it. We’ve all been to doctors who gave us none of these things, so I’m pleased with his care even as I’m frustrated that he’s been unable to give me an instant fix. It’s beginning to dawn on me that there may not be a fix for this one, just as there’s no permanent fix for rheumatoid arthritis. I’m just going to have to make my peace with that. It’s hard, particularly when the pain is constant. But I’m getting there, little by little.
In spite of my current bout of pessimism, I’m still holding on to hope. I refuse to give up. And my inner optimist is still there, too, telling me that there is a bright side to this bursitis. What is it? The low, intense ache makes me aware, all the time, of my legs and hips, which isn’t exactly pleasant. But that awareness is an opportunity for mindfulness. It allows me to be in the present moment, aware of the pain but also of the good—the beauty of the day, of the people around me, of the pleasure of small things and small comforts. They almost always override the glumness that comes with constant, nagging pain. I like being mindful. It’s the base of hope.
It will never go away as long as the base is strong.