RheumaBlog

Same dragon, different day.

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.

20 thoughts on “Questions and answers

  1. Polly says:

    Oh Wren … you ARE having a rotten time of it. I’m not surprised your inner pessimist has has an outing! I really hope things improve for you soon and that ‘yet another increase’ actually does the trick this time! Flippers crossed. Polly Penguin xx

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    1. Wren says:

      Thanks, Polly. I’ve slept a bit better the last two nights, so it just might have. Of course, I was busy as a one-armed paper-hanger both Saturday and Sunday, so it could be that I was simply so tired I slept in spite of myself! I’m leaning toward optimistic. 😉

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  2. Thrive with RA™ says:

    Hi Wren,

    I noticed a definite positivity in your words. I noticed your words of “mindfulness” and “present moment.” There is much to be said about not looking too far ahead if it circumvents the present, while at the same time, taking a step back from the closeness of a situation for a better perspective. I think your words share a realization of things, yet still hopeful for improvement — wishing for better, while dealing with the situation at-hand in an emotionally healthy way, without pining away uselessly. You are strong in purpose and resiliency!

    Your Doctor sounds like he chose the right profession. 🙂

    Thank you for sharing.

    TWRA

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  3. Thrive with RA™ says:

    P.S. I also wanted to say that I am sorry that you have Osteoporosis and are in pain; however, I’m not seeing the “crankiness” you mention. 😉 Maybe your kitty should keep her judgments to herself. 😉

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    1. Wren says:

      Thanks for the vote of confidence and kind words, Thrive. I’m honestly very tired of the bursitis pain, which robs joy from the day if I’m not mindful, and sleep from the night no matter what. But odd as it seems, I’m also getting used to it. Maybe it’s because I’m a long-time mindfulness practitioner; I was doing it years ago, before I even knew it had a name. Mindfulness has been a real sanity-saver for me, but it still takes constant practice. It’s easier to lapse back into pessimism and bitterness, but that only destroys happiness. I’ll take the harder path for the sake of the smiles. 🙂

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  4. Wren, I am so glad you have such a caring and compassionate doctor. What I am so sorry about is the even with all of that, you still suffer. Truly, I hate to hear it. All I can hope is that the ortho doc can fix this now constant problem. And I am hoping you have had your vit D level checked…yes? And you are on a regimen of calcium and vit d being you had osteopenia and now osteoporosis? I sure hope so. Please know you are in my prayers and thoughts for better days ahead. You deserve it!

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    1. Wren says:

      Thanks so much, Deb! I’ve been on supplemental calcium and Vit. D for several years. My rheumatologist put me on them before that first scan was ever done, as he knew I was menopausal and had the added special bonus of severe, active RA. I do feel I’ve done what I can, so far, to avoid osteoporosis. In the meantime, I’m holding out hope for the orthopedist, too, to help me deal with this aggravating bursitis. I hope you’re feeling well!

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  5. Rositta says:

    I’m having a bad bout of bursitis at the moment as well. Can’t get emergency appointments with my rheumy or orthopod so my primary care doc sent me to another ortho guy for a cortisone shot. He promptly refused which leaves me currently in nowhereland. Sucks but can’t be helped. I’m icing it a lot. I can’t take pain
    Meds because then I can’t drive. Miserable vicious circle. Wishing you well…ciao

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    1. Wren says:

      It’s good to hear from you, Rositta! I’m really sorry you’re having to cope with bursitis, too. It’s a completely different sort of pain to RA (at least in my experience). Even when it’s not terribly intense it’s hard to ignore and is exhausting. Why wouldn’t the doc give you a cortisone injection?
      Icing, alternated with heat every 20 minutes helps mine some, mainly by distracting me. Can you take pain meds in the evening, at least? When you will be going to bed and not driving? I hope you’ll be able to get this resolved somehow, soon. Sending warmth and comfort your way,,, Tscheuss… 🙂

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  6. Cathy says:

    Keep hold of that bit of optimism. I find that sometimes, that is the only thing that keeps me going.

    Hip pain can definitely be one of the worst pains in my opinion so my heart definitely goes out to you. Sending lots of gentle hugs and healing thoughts to you Wren.

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    1. Wren says:

      Cathy, you know, as hard as I try I just can’t ditch my optimism! 😉 And you’re right: like you, I believe that hip pain is just about the worst. There’s just no comfortable position.
      But there IS good news–for the third night running, I’ve slept much better in spite of the pain. So it looks like this last 25 mg–bringing the total dose to 100 mg–of nortriptyline is finally working its magic. I was a bit bleary when I first got up–today is an aunt-uncle-cooking day–but that disipated in the shower. Yeah!
      Thanks for your kind and gentle words, C. I hope that your day will be wonderful and pain-free.

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  7. carlascorner says:

    Goodness, Wren. It seems that hip issues and sleeplessness go hand in hand and both are enough to make a saint cranky. I’m sorry that some of the treatments are closed to you, but your doctor obviously cares about you and if he thinks the orthopedic consult is worth exploring, then I have great hope that it will offer you some relief. In some ways, I feel like you have crossed yet another one of those boundaries in your journey with this disease. My hope is that this new chapter brings you new avenues of health.

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    1. Wren says:

      Thank you, Carla. Crossing new boundaries… I hadn’t looked at it that way, but you’re right. Whether I like it or not, the rheuma dragon and his aggravating buddy the bursitis gremlin are my constant companions on my journey through life. And we have crossed a boundary of sorts. I wonder what’s ahead?
      Your thoughtfulness made me smile. I hope you’re finished with that last big flare and that you’re feeling well.

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  8. WarmSocks says:

    Hi Wren, I’m sorry things aren’t going so well right now. Despite it all, you still find the positive, and that’s good.

    When my mom was diagnosed with osteoporosis, her doctor recommended the book Preventing and Reversing Osteoporosis, by Alan Gaby, MD, and she was successful in rebuilding her bone density. You might be able to find it in a public library, or do inter-library loan if your local branch doesn’t have a copy.

    Hang in there.

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  9. Wren says:

    Socks! Hi! (gives her a big ol’ hug) I’m hangin’ tight, no problem. It’s good to hear from you! I’ll see about getting that book from the library or perhaps on my Kindle. Thank you very much for recommending it. I’m glad your Mom was able to successfully rebuild her bone density–that’s no small achievement. I hope you’re feeling well, m’friend.

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    1. WarmSocks says:

      🙂 Thanks, Wren.
      I just checked; the book costs less on Amazon, but isn’t available on the Kindle. Yet. There are a bunch of used copies, though.

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  10. Squirrel says:

    Oh Wren, so sorry to hear your troubles continue. I just know that you’ll find some way forward, you have such a great spirit!! My thoughts are with you.xx

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  11. Wren says:

    A great spirit! You’re so sweet to say so, Squirrel! But you know what? I believe the ONLY way is forward. I think one of two things will happen: either the orthopedist will have some secret treatment for the bursitis that will make it more bearable (or even get rid of it!), or she/he won’t and I’ll go on learning how to live well in spite of it.
    Thanks for the kind thoughts. 🙂

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  12. Chelsea says:

    Wren – wishing you the best as always and hoping they’ll come up with something. Is your bursitis aggravated by sitting? The only other non-medical thing I can think of right now for you is to rest the hips as much as possible for a period of time, although I know that’s about impossible. I know it seems absurd but perhaps using a wheelchair with a basket attached in some places and maybe a rolling chair in the kitchen and other spots for a few/several weeks might help give it enough rest. I suspect it’s the activity that’s keeping it activated more to some degree.

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    1. Wren says:

      Chelsea, it’s always so nice to hear from you! And thank you for your kind and thoughtful words. I WISH just sitting and resting my hips was the answer to this bursitis, but I’m afraid it’s not. I think maybe I do rather too much sitting, actually, and just this morning was contemplating taking a decent walk each day, even if it hurts. I do stretching exercises in the mornings in an effort to keep my IT band stretchy, but that doesn’t seem to be making any appreciable difference.

      Grrr.

      I’m not sure if you blog, Chelsea (if you do, I haven’t found it yet), so I don’t know how you’ve been doing lately. Are you well? Is your RA behaving? Sending a warm hug and lots of gentle joy your way. 🙂

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