RheumaBlog

Same dragon, different day.

RA blogger Kelly Young has a great post and comment thread going on the subject of morning stiffness over at Rheumatoid Arthritis Warrior. Dang, she’s good! Reading through it got me thinking. Kelly mentions that one of the questions rheumatologists have always asked their patients is whether theyhave morning stiffness, and if so, for how long? Then she says that recently, morning stiffness as a reliable indicator of RA has been dropped, so some rheumatologists no longer ask about it.

My own rheumatologist asks this question every time I see him. And every time, I feel a bit embarrassed because I’m rarely stiff in the morning anymore. Instead, I tend to get stiff later in the day if I sit for too long. Even then, it’s confined to the joints in my lower body – my hips, knees, and sometimes my ankles or the joints in my feet, and it takes only half a minute or so to resolve.

It wasn’t always like that, though. When I was first diagnosed, I was painfully stiff to the point of stumbling around each morning, and the stiffness was all over my body. To loosen up, I’d have to take a hot bath or shower, and it would be an hour or more before I could move somewhat normally. In addition, back in those bad old days (now more than 20 years ago) the bottoms of my feet hurt like hell every single day. I’d wake up in the morning feeling like I’d been standing on them all night long, or like someone had been beating them with canes while I slept, and I’d gimp around on them all day. My painful feet were a constant; flares in other joints happened along with them. And back then, my doctor never asked me about morning stiffness at all.

The nature of rheumatoid arthritis is unpredictable, for the most part, and it seems that everyone experiences the disease a little bit differently. For the longest time I could find no information about RA affecting the bottoms of my feet – I thought perhaps it was unique to me, and so I doubted myself. My RA didn’t act like the RA I read about in others, either. My flares moved around from day to day, too. One day my right knee would flare; the next it would be my left shoulder, and the day after that, it might be my great toe on my left foot. The duration and intensity of the flares varied, as well. Sometimes they’d last half a day, and sometimes for up to five days. Sometimes the flare would be mild, and other times it would be so bad I’d have given anything for a chainsaw so I could just cut the offending limb off and have done with it. Finally, if there was something to be grateful for in all this, it was that I very rarely had more than one joint flaring at a time, meaning that both knees didn’t flare at the same time, or both hands. I counted myself lucky for that.

My RA went into remission after about eight years, and stayed in remission for about six years. When it came back, it presented differently. Today, the bottoms of my feet hurt only rarely. My wrists and hands hurt nearly all the time, but for the most part, the pain is low-level pain (say 3-5 on the 1-10 pain scale). While my other joints do flare now and then, the flares tend to be shorter and less painful than they used to be. I don’t recall being fatigued all the time in those early years, or having brain fog. But today I deal with both, frequently.

Am I grateful for the lessened pain? Oh, yes. I’d like to think that the medications I’m taking today (Arava, sulfasalazine and most recently, plaquenil) are keeping my RA quiet and minimal. I’ve gotten pretty good at pacing myself to minimize the fatigue, too. But I know that it could change at any time. The one thing you can be sure of with RA is that it will change.

I’ve been very lucky that so far, the damage RA can do to the joints has been minimal in me. My hands aren’t distorted, nor are my feet. Most of the time, I have little problem with mobility, though my hands and wrists are sometimes weaker than I’d like. This, too, could change. It makes me very aware of how well I’m doing at the moment—and it makes me wary of the future. For that reason I’ll keep taking these meds, even though I wonder, sometimes, if they’re doing anything at all.

Go visit Rheumatoid Arthritis Warrior when you have a little time. The whole website is terrific—Kelly has done, and continues to do, some phenomenal work. Her research is fantastic, her empathy incredible. The visit will be well worth your time, and it will help you feel less alone as you battle this disease. That feeling of aloneness is one of the hardest things about RA, so it’s good to know that we all have comrades in the long fight.

7 thoughts on “Where’s my oil can?

  1. Polly says:

    Ah … so that’s why I’ve given up blogging for the moment … you say it all for me! I too hardly ever get stiff these days (just the odd day when I can’t lift one arm or straighten one leg), but I certainly did in the early days (although my early days were only three years ago!) And I also get awful problems in the balls of my feet – there now seems to be plenty of evidence that it can be RA related – can also be bursitis between the joints down there, or something else I came across the other day called plantar plate something or other – involving slipping of one of the tiny bones I think due to a stretched ligament … but I might have that all wrong!

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  2. clare says:

    a BOB is a running stroller!!! 🙂

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  3. Helen says:

    The unpredictability, and the vast array of possible symptoms, frustrate me to no end. If my disease were more visible, it would be so much easier just to point to the pain and show my doctor what was happening. I do get a lot of morning stiffness, but I hardly have any inflammation (usually). And, like I think you said in one of your comments on my blog recently, chances are that when I do have visible signs, they’ll be gone by the time I get to the doctor.

    Some days I’m actually grateful for my permanent damage and visible joint deformity because it’s like a badge of proof – it says, “hey, I have this disease, and its effects are real. Just look!” So even as my disease changes, that damage is there forever.

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  4. Eileen says:

    How interesting! I don’t have RA, “just” PMR – but the bottom of my feet feel just like that so often. Before I was diagnosed I couldn’t wear most shoes – I thought it was just me. PMR is a poor relation – difficult to get a diagnosis (and anyway it’s only a description) and the only medication is enough steroids to reduce the inflammation to stop the pain and stiffness. It varies from day to day too – I just wish it didn’t hurt enough to be able to stand and walk around the house a bit in peace. But the joint deformation isn’t a part of it so I should be grateful – no-one has heard of it unless they have it and doctors often try to make us feel we’re complaining about nothing so a bit of sympathy would be nice occasionally. Especially about the fatigue – and whilst that comes from not pacing it also comes out of the blue for no reason. Does that happen in RA too?

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    1. Polly says:

      Hi again Wren, and hi Helen and Eileen – I’ve heard of PMR, but only because I know someone else who has it. As to fatigue, DEFINITELY sounds the same to me!! Certainly not pacing it doesn’t help, and certainly I’m often guilty of not pacing it, but even when I do it can jump out and bite. According to the latest NRAS magazine (National Rheumatoid Arthritis Society, UK-based) fatigue is one of the most common complaints from patients, the thing they find worst quite often, and also the thing least understood by doctors. (I also think because they don’t understand it, doctors just tend to ignore it!)

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    2. Wren says:

      Hi Ellen…
      I’m sorry to say I hadn’t heart of polymyalgia rheumatica (PMR) before you mentioned it here, so I looked it up. OW! It makes me a bit angry that the doctors you’ve been to about the condition treat it so casually, as if you’re making it up, because it’s obviously a rather well-known medical condition among the elderly (mainly). I’m glad that corticosteroids can be so helpful, but understand completely your frustration with it. Unpredictable just like RA — what fun. And yes, fatigue is definitely one of the symptoms of RA. Those of us who have it struggle all the time with “pacing” ourselves so as not to overdo and end up paying for it with several bad days worth of flares. It’s a struggle because of the disease’s unpredictability. When we feel good, we tend to want to get as much done as possible and often, forget that we should be careful.

      I hope your PMR eases off and leaves you alone. I also hope your doc will change his tune and take your pain, fatigue and discomfort more seriously. Be well.

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      1. Wren says:

        Oh, and hi Polly, too! I had no idea that bursitis could occur in the balls of the feet. Sheesh. Wonders never cease…

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