You know, it’s easy to complain.
I do it all the time, about all sorts of things. Who doesn’t? It is, I think, part of the human condition to never be quite happy with the status quo. But it occurred to me this morning, as I was warming and loosening up my creaky hands – opening and closing my fingers, assessing which ones hurt in particular and where they hurt, bending and rotating my wrists – that maybe, when it comes to my RA, I’m complaining too much.
While my hands and wrists DO hurt pretty much all the time, the pain is neither overwhelming nor intense. It’s like they have headaches, the dull, background kind with the occasional drill-bit-over-the-eye type headaches. There are moments when all I can do is stop whatever I’m about and just hold my hands to my chest, massaging gently, waiting for the blaring, pulsing pain to die down. But mostly, they’re just generally sore and I manage in spite of them.
Yet I frequently think about, and sometimes write about, how I don’t think the rheuma drugs I’m taking are working very well. I have that perception precisely because my hands have headaches day and night, sometimes a little better and sometimes worse. It’s frustrating, to say the least, because when I first started taking drugs specifically for rheumatoid arthritis, 18 months ago, my hands didn’t hurt as bad as they do now. So it’s not a surprise that the Arava, sulfasalazine and diclofenac tabs I take every day, along with Tramadol and Tylenol, don’t seem to be making any difference.
“Seem” is, however, the pivotal word.
My hands and wrists seem worse than before, but how would they feel if I wasn’t taking the medicines? Would they be the same, or three times as bad? Ten times as bad? So far, I don’t have any deformity in my hands or anywhere else in my body, even though I’ve had the disease for more than two decades, and during the first, the pain it caused in various joints was both disabling and devastating. I limped frequently. The bottoms of my feet throbbed and ached constantly, as if someone had been beating on them with canes during the night. One day my shoulder would flare so badly that I couldn’t get dressed on my own. Another day my right hand would be so intensely painful I couldn’t hold a pen, or type. I often needed a cane, and several times, crutches. And one dark, awful time the pain was so bad in my right hip, my doctor hospitalized me for two days so they could give me painkilling medication intravenously until the flare finally let go.
All of that was in spite of NSAIDs, oral gold, and frequent prescriptions for narcotic painkillers. After I returned to the U.S. I stopped taking all of them and stopped seeing a doctor for my RA. I was convinced they could do nothing for me but prescribe useless drugs that risked my health in other ways and made my stomach hurt all the time.
And amazingly, after a few years the disease went into remission. I was … glad. SO glad. But I also didn’t want to think about it too hard.
My rheuma returned in 2005, manifesting as synovial pannus – a great, hulking, sudden double lump of it over my right wrist. It was mostly painless, so I was pretty surprised. An orthopedic surgeon identified it for me, surgically removed it, and advised me to see my PCP for a referral to a rheumatologist, because even though I hadn’t felt it, the rheuma was still active in my body and still doing damage.
I did see my PCP for the referral, but in the end, I cancelled the appointment. I didn’t want to start that ridiculous, endless loop of useless drugs again. I didn’t want to worry about my liver, or have to have blood drawn every other week, like I had in the past. And once the surgical wound in my wrist healed, there was no pain. Why go through all that – and risk side-effects – if there was no pain?
Well, in February of 2008, I started feeling RA pain again. Mostly in my hands, but occasionally in my hip, or my knee, or my shoulder. It wasn’t intense. But I knew I was in a corner. I was unemployed by then. I had no health insurance. I hadn’t been able to find a job. So, since I’m a veteran, I applied for health care through the Veterans Administration. To my great relief, I was accepted. And after my initial physical, my primary care doc referred me to the rheumatologist. He’s great.
Sure, I complain that the drugs don’t work very well. I’m an American. I want instant relief! I KNEW that all these newfangled drugs wouldn’t work any better than the old ones! And yet … and yet. The pain I have today is nothing like I had before.
I fear that sort of pain now. I have nightmares about it. My fear colors my view of the future – I know that RA will be a constant, unwanted companion that will cause me no end of trouble – but so far, I haven’t experienced it, even though my hands and wrists seem to be getting worse in tiny, steady increments. But even then, the pain is bearable. I’m so grateful for that, I hardly have words to describe it.
The only way to find out if the drugs I take aren’t working very well is to stop taking them. But unless I’m cut out of VA health care and can’t get other insurance, I won’t risk that. I’m afraid to stop taking them this time.
I’ll be seeing my rheumatologist again in about six weeks. I’ll tell him, then, that my hands are slowly getting worse. I imagine we’ll try something new at that point. But in the meantime, I’ve decided I’m not going to complain about the efficacy – or lack of it – of my rheumatoid arthritis meds anymore.
I really, really don’t want to tempt fate.
I was feeling the same way you are when I was forced to stop taking Enbrel for 3 weeks after I lost drug coverage when I graduated from school. I felt absolutely terrible; I could hardly move. I couldn’t dress myself, brush my own hair, hold a telephone, or get up or down stairs. It was a very dark time. I cried, a lot.
Pain scares me, too. The fact that my right hip is flaring worries me, because my hips have never been affected by my RA until about a year ago. How can my RA suddenly move into a new joint when the Enbrel is working so well?
Aometimes it’s best just not to think about it.
It sounds as though your RA smoulders and doesn’t plan to leave you. That’s what mine does though I do have joint damage that is visible. I took Arava for a while but it did not agree with my digestive system – after that one I was switched to Imuran and it was an improvement for a few years.
But what works for one does not work for all.
I think my medication is working less well. After 3 years on Humira I have more pain than I am used to, so we’ll see what the rheumy says. I see him in 4 weeks.