Wanted: Pain Whisperer

Whisper-in-ear

I had an interesting appointment with my rheumatologist recently.

I have a standing lab order at LabCorp; my doctor renews it every six months. (I get blood drawn every six weeks.) Several months ago, at the beginning of a new six-month period, I noticed that the lab technician only drew three vials. (Usually it’s six or so.) So I asked, and it turns out that my doctor dropped several tests on my most recent lab order. Right now the only tests being done are the CBC and two liver tests (ALT and AST). The ones that have been dropped include things like sed rate and CRP. So, as I understand it, I’m mainly being checked for damage from medications – not for any of the markers that indicate inflammation or give an idea of disease activity.

So at my last appointment, I asked my doctor about this. He said that he doesn’t find the blood numbers particularly meaningful, and that he believes that patient reports are a far more important indicator of disease activity. (He does have me fill out a detailed questionnaire every time I come in, and he always does a joint exam.) “You are your own best sed rate,” he told me.

“But I’m not always sure that I really know how the disease is doing,” I said.

He smiled at me. “Oh, I think you do.”

I have my doubts about this. On the one hand, I think it’s great that he really listens to his patients. I know that it’s a very bad thing when the opposite occurs. (Kelly at Rheumatoid Arthritis Warrior has written about this a lot.) But I also hear other RA patients talking about things like the Vectra DA test. I also know that disease activity can continue when symptoms are quiet – I’ve even heard stories of people who thought that they were in remission while serious damage was happening underneath their level of awareness.

There’s another problem with this, too. I have always had trouble interpreting my own pain. I’ve never been athletic, and when people talk about the difference between “pain” from injury and the good “soreness” from exercise, I have no idea what they mean. Even long before the RA diagnosis, I always had trouble with this distinction. Once the RA came along, it got even more complicated for me – is this a flare? Muscle pain or joint pain? Is it the exercise or the RA? Is it caused by stress or depression? Sometimes, especially if I haven’t gotten enough sleep, everything seems to hurt, even though a joint exam and bloodwork show no problem. Other times, I have such a high pain threshold that I don’t even notice it. I once walked around for two weeks on a sprained ankle with no idea, simply because I had gotten so numbed to RA pain that the injury didn’t even register.

Do any of you have this kind of “pain-deafness,” or am I unusually out of touch with my body? I wish I had a Pain Whisperer – someone who could tell me, “This is from the RA.” “This is normal muscle soreness from exercise.” “This is because you hurt yourself.” Someone who would always be right, who wouldn’t miss anything. (I’m thinking back to the many alternative-medicine practitioners who got it wrong during the months before my RA diagnosis.)

In the meantime, I don’t know what to make of this change to my lab work. I’m suspicious because of the timing. I’ve noticed a lot of changes (almost all negative) in the way my insurance handles things since the new year. Right now my Remicade infusion has been delayed because of one of these insurance changes (a subject for another post). So I have to wonder – is this an economic decision? An insurance decision? Or is this how my doctor really feels?

Now I wish I had a Medical Practice Whisperer.

Edit: I just read this post over at Pollyanna Penguin’s blog – seems I’m not the only one with this issue! And I was also reminded of this 2009 post at Carla’s Corner – funnily enough, I see that I commented on it at the time! Guess this is a long-standing issue for me!

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4 Comments

  1. Wren says:

    I can normally tell RA pain from other pain because RA pain doesn’t have a “cause.” For instance, a knee aches and hurts sharply when I move it–and I know I haven’t injured or overused it. I didn’t fall, I didn’t twist my knee, I didn’t go jogging. There is just no reason for my knee to hurt–so it’s RA.

    Before I was diagnosed, I often woke to shouder pain that would persist for a few days. I didn’t know I had RA, but I knew I hadn’t injured my shoulder or done exercise that would cause sore muscles. Besides, this pain felt different than muscle pain. It hurt to to the degree that I couldn’t bear to move my shoulder. My explanation? I must have “slept on it wrong.” Lame, but I had no other options.

    I think it’s good that your doc uses your reports of how you’re doing rather than rely solely on blood test results. I see my doc four times a year. This last year, each time I’ve seen him he’s told me my bloods look great–so my reports of increased pain in my hands and wrists are basically ignored. I like my rheumy, but this is frustrating. Once, he even told me that my pain was fibromyalgia, which I found infuriating.

    I’d love to have a “pain whisperer!” I’d have her whisper into my doctor’s ear!

  2. Polly says:

    Oh yes I do SO relate – and so does Carla over at Carla’s Corner who’s also posted about such problems lately! I relate on both sides – both the reduction in ‘bloods’ and the inability to know what pain is what. My blood frequency is being reduced, but the tests will stay the same. However the reason for that is negative – the ONLY way I could get onto a biologic drug on the NHS is to have high ESR or CRP. I never do – even when I’m flaring, my knees are the size of footballs and steroids do the trick – but they keep testing it!

    As to what pain is what, it’s a complete nightmare. Like Carla I used to think after my diagnosis that every pain WAS RA, and now I’m inclining the other way, but it really is soooooo hard to tell!

    Mind you – if this IS how your doctor really feels it’s good in its way. I’d much rather be listened to than told my bloods are fine – but I still understand your concerns. It would be interesting to see what happened if you went in and said, ‘I feel awful – I’m in pain’. Would he treat or would he do bloods first? My guess is the latter!

  3. WarmSocks says:

    Tests they don’t do are tests you don’t have to pay for. Yay for your doctor! My ESR is usually around 1, despite visible inflammation. I’m told that’s because they use a machine, instead of manually counting while looking through a microscope. If the cells are falling really fast (very high sed rate), the machine can’t count them and it falsely looks like a low number – sometimes even zero).

    To further complicate things, pain can be caused by an injury that might not have occurred w/o RA, maybe because the tendons and ligaments surrounding joints are weakened. It’s highly frustrating.

  4. Carla says:

    Hi. I’m sorry that it’s been so long since I’ve checked in on you. And, yes, as I was reading my post I remember you commenting (and doing your own blog post) way back when. I love your idea of an RA Whisperer. I, too, would love some devil/angel on my shoulder telling me whether it’s RA or me just overdoing. Not sure what to say about the tests. My tests have been stone cold normal from the very beginning — and that was five years and three joint replacements ago. Anyway, I’m glad you’re doing the occasional post. I miss you. And yes, we are out here if you need us. Take care.

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