Worry

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I don’t know about you, but I don’t like to obsess about my rheumatoid arthritis.

I’d rather live day-by-day not thinking about the disease, not wondering what that random twinge in my knee means (just a twinge, or the start of a bad flare?). I’d rather not have to take a literal handful of pills every morning and evening. My family, I’m sure, would rather not have to hear about my sore hands, though I must say they’re pretty good about pitching in when I discover I’ve pushed myself too far.

Like last night. I decided to make chicken burritos for dinner. I baked some frozen chicken tenderloin pieces, let them cool, and got a couple of forks and a bowl to shred the baked chicken into. Got started—and realized a minute later that my hands just weren’t going to accept this particular chore. I’d already forced them to endure several hours of early-morning firewood-stacking. They were holding up surprisingly well, but holding two forks and shredding chicken was the last straw.

So I asked Mr. Wren to do it while I prepared the other ingredients. He did, and we worked together on dinner. It was nice, and the meal turned out tasty.

But in spite of my triple-whammy-drug-regime and how I feel (ever hopeful) that it just might be working, there still isn’t a day that goes by that I can forget I have RA. My sleep last night was restless because of bursitis pain in my hips. The bursitis, I understand, it a sort of side-effect of rheumatoid arthritis. The bursitis is odd. The pain is bad enough to wake me over and over, and make me uncomfortable, but not bad enough that I need medical intervention. I’ll admit that the idea of steroid injections in my hips gives me the heeby-jeebies, but if the pain gets really bad, I’ll make an appointment and get them. I really will. But so far, I haven’t reached that point, and I hope not to.

Tonight my hands and wrists continue to ache, but this pain is almost nothing compared to the pain I used to endure. It’s almost embarrassing. And yet my hands are painful enough that I cannot ignore them. I take Tylenol and tramadol, dip them in warm paraffin, and put my Spidey-gloves on, wishing that the pain would just go away once and for all.

Well, it won’t. I know that. One of the hard things about living with rheumatoid arthritis is knowing that it can change at any moment. My pain is unpleasant but bearable today, seemingly under control with the help of my medications. Yet even as I celebrate that fact (and I am grateful!) I can’t help but worry about what I’ll do should my RA go south on me and get suddenly much worse. I can’t help but remember, with real dread, the truly severe, intense, days-long flares I used to endure in my shoulders, knees, ankles, toes and even my neck and jaws. How would I handle that awful pain now, all these years later? I’m a lot older and not quite as strong or resilient, now. And I worry about painkilling medications. I can no longer take Vicodin or Percocet comfortably; I guess I’ve taken them for so long over the years that they longer work for me in normal dosages; both make me feel rotten when I take them. So I stay away from them by choice.  But I wonder: how will I handle a really bad flare, one that’ll require a pain medication stronger than tramadol?

I know I shouldn’t worry about what hasn’t happened and may not happen. I know that when and if it does, I’ll manage somehow, just like I did before. I want to have faith in the meds I’m taking now, that they’ll continue to work for a good, long, time; that the fact that they seem to be working isn’t just a fluke.

I’d like to live each day not thinking about my RA. But it’s pretty hard not to.

11 thoughts on “Worry”

  1. Wren, talk to your doctor about your hips. There’s no reason to continue enduring the pain. If it’s waking you up, then there’s plenty of room for improvement. A cortisone injection then a few days to let the steroid work its magic, followed by some physical therapy to strengthen the muscles around the bursa would have you feeling so much better. Skip the steroid shot if you wish, PT will still help.

    It’s great that your husband will pitch in and help with meal prep 🙂 But you shouldn’t still be flaring. Any chance your doctor would add mtx or a biologic? I hope you get feeling MUCH better. {{{Gentle hugs}}}

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  2. I’ll be seeing my rheumatologist again in November, Socks, so I’ll talk to him again about the bursitis. One of the reasons I’m hesitant to take steps to treat it is that it’s so transient. I can go all day (most days) without any trouble from it, but then toss and turn all night because my hips hurt when I’m laying down. It’s really weird. I’ll ask, as well, about PT for them. That will probably be more efficient than an injection.

    MTX was the first DMARD my rheumy put me on. Unfortunately, the stuff made me feel really awful–I stuck it out for six months, but finally begged him to try something else. He put me on Arava, which I tolerate well. He hasn’t mentioned a biologic so far (and I only started the plaquenil recently), but he always points out how much better my sed rate is, in spite of my telling him I still have pain in my hands. He feels the meds are working. I sort of doubt he’d prescribe a biologic unless my test results were bad along with my pain levels. And truly, this pain is mild compared to what I used to have. It’s a conundrum.

    Thanks for your support, Socks. I really appreciate it. And I hope you’re feeling well this weekend. You, and your daughter, are in my thoughts.

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  3. I don’t want to think about it either. I have found some relief with the humira, but if I flare, badly, I have no idea what I will do. I do not think I can take nsaids anymore. Will I have to inject pain meds? I have no idea.

    I hope you kind relief for your hips.

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  4. I’m right there with you when it comes to the fear of my ra returning to what it was when it first began. After a fairly long drug induced near remission my ra came back with a vengeance a few years back. It was shocking how quickly it turned. I had really begun to think it would never really bother me again. I have been fortunate that the biologicals have dampened the pain. The thought of it returning full blown literally terrifies me at times. All we can do is move forward and hope for the best.
    I’m with Socks on the bursitis. I think if it is waking you at night you should talk to the doctor about moving forward with treatment. You shouldn’t live with pain if there have other reasonable options and this has been bothering you for quite a while. Just my 2 cents.
    Hope you feel better soon. Oh and great job with all the wood stacking you have done in the past week. It makes me tired just looking at the pictures.

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  5. I had pain in my hips last night too. Like you it makes it uncomfortable to sleep. Maybe we can both fit a nap in today. I am on my way to check out a good book at the library so I can snuggle up on this cool day.

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  6. Wren – I’m suffering with brain overload having found Kelly’s site! BUT – am I hallucinating or are there really patients with diagnosed RA who also seem to have something else (like fibromyalgia or something) superimposed on it that doesn’t respond to the DMARDs???? If so – do you take any steroids orally? If not, have you tried a brief challenge at 15-20mg/day? I can’t get over the common points between RA and the PMR (polymyalgia rheumatica) that I have and the hip pain is one of them. It was absolutely the most painful bit for me before diagnosis and within a few days of starting steroids I could sleep at night because that pain didn’t start up and I could stand and walk again. Originally, one of the doctors who identified PMR called it “non-serogenic RA”. I am so glad that what I have is not yet full-blown RA – that may come I suppose – but if only the medics would look a bit closer at what their forebears said about it a 100 years ago and think laterally – my peers might benefit a lot.

    PS – do RA patients also suffer from dyslexia with the brain-fog? It drives me up the wall when typing!!!!

    so pleased to have met you all – vitually speaking that is,
    Eileen

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    • Hi Eileen–
      From what I’ve read, many people with RA do also have fibromyalgia (Lana, who writes the blog “Living It, Loving It” is one of them. The link’s in my sidebar). I don’t know if the two conditions are related, as the cause seems to be quite different. RA is an autoimmune disease, while fibro seems to be caused by the brain’s pain synapses working overtime). Both, though, can be awful. For many people, DMARDs are very helpful in controlling RA symptoms; they have no effect on fibro, though.

      I’ve not tried taking steroids, yet. Honestly, after everything I’ve read about the side-effects (moonface, camel-hump, weight gain) I’d rather not, if I can avoid it, even though they may relieve my pain. I guess if it gets bad enough at some point I’ll reconsider. That said, I’m very glad steroids have worked to relieve your hip pain and restore your mobility.

      I’m sure that brain-fog could cause temporary dyslexia, just as it causes me to forget what I’m looking for in the linen closet or where I put my sunglasses sometimes! 😉 I think we all have our forgetful moments, or times when we transpose letters or misspell simple words when we write, but that danged brain fog sure doesn’t help.

      Thanks for the comment–it’s great to meet you, too! 😀

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      • I ask because there are some of Kelly’s readers with this “superimposition” of something have complaints that don’t parallel FMS but do bear a distinct similarity to PMR – hence why I wondered if any of you had ever tried steroids as I know they are sometimes used in RA and that would deal with PMR. They’re not as bad as they’re painted – by no means everyone gets the side-effects, I don’t have a moon-face, was already overweight beforehand and, if anything, have lost a bit of weight, and I have other friends who would say the same – moonface versus nearly no pain – no contest!

        BTW – we have other things in common! I too used to live in Germany but near Nuremburg (not military though, Brit in a Uni)
        Eileen

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  7. I understand the worrying, it seems part of my routine these days. Tell you what, I’ll worry for you, you worry for another, and maybe someone can handle my worries better than I can. Joking of course, but i never seem to have the right answers to match my questions.

    I have been working on a new business blog, sorry I’m not around like a good friend should. I cherish my online friends.

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  8. I hurt everyday but choose to not think about it. I refuse to let RA dominate my life, thoughts and worries. I hope you are feeling better by this time. I dread winter coming on, winters are always rough on me.

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  9. I would like to suggest you visit http://www.roadback.org and look into low dose, long term antibiotic therapy.

    There is also a book you can read on the subject. “The New Arthritis Breakthrough, Including Dr. Brown’s classic, The Road Back by Henry Scammell”

    I can’t offer much in the way of info, since I am new to it myself, but I sure wish someone would’ve told me about it years ago.

    Take care,
    Gina

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