Last week, on May 30th, was my first-ever infusion for a rare neuro-inflammatory disease. It looked like the same set-up as for chemotherapy, but the specialized team at my hospital was giving me pain medication – an anaesthetic – not cancer drugs. So I was lying in a hospital bed, hooked up to all the regular hospital monitors as well as an IV bag.
The infusion itself went really well. If you’d like a description of that, read: Infused. And in case you haven’t been following this blog, my disease is called Complex Regional Pain Syndrome (CRPS) but many folks (including doctors!) still often use it’s old name; Reflex Sympathetic Dystrophy (RSD).
CRPS causes a strange assortment of bizarre and painful symptoms, and – so far – no one knows what causes it. Because each patient presents differently, has a slightly different set of the possible symptoms & severity, no one really knows how to treat it either. Diseases that cause long-term or chronic pain are notoriously hard to treat, and “CRPS is recognized as one of the most difficult conditions to treat among pain syndromes.”(1)
After my infusion, just before I left the hospital last week, one of the nurses at the Pain Management Unit (PMU) scheduled me in for a follow-up call a week later. One of the PMU’s nurses would call me, at a scheduled time, to see how I was doing after the infusion. The PMU did this so I wouldn’t have to go back to the hospital, just for a follow-up appointment. I really love it when they do things like this, to make life easier for their patients!
That call was at 11:00 this morning. When they do these kinds of follow-up calls with me, the nurses have a set of questions to ask. So I answered her questions, wondering when she’d ask me whether the infusion had made any difference. And trying to figure out the best way to describe what had happened to me in the days after the infusion. The change that it made to my disease, and to my pain level.
When the nurse had finished asking her questions, about whether I’d had any side effects or bad reactions, she asked a more general: “And how is your pain level now?” That was the question I’d been dreading, because I was worried. Worried that telling the nurse what had happened would make my doctors less likely to treat me, or hesitant to try new therapies.
The goal of the infusion was to reduce my pain levels; I use the word ‘level’ in the plural sense, because this disease causes more than one type of pain. I call them layers of pain. Two examples – of many! – are excruciating neuropathic (nerve) pain and horrible joint pain. So the hope was that, once the anaesthetic medication in the infusion wore off, at least 1 – and hopefully more – of my pain levels would be lower than they were prior to the infusion. This has worked for other patients with CRPS, so we were all really hopeful; me & my husband, my pain specialist, and the nurse who stayed with me during the infusion.
This is what I told the nurse, during our phone call this morning:
By the time I left the hospital at about 1700 on the day of the infusion, the tingling feeling on the inside of my lips had already stopped. That, other than the pain being gone, was the only effect I had from the block. Then, at about 2000, the pain in my hand and arm started coming back as the last of the anaesthetic from the infusion was wearing off. By midnight my pain level wasn’t the same as it was before the infusion – it was worse!
A few months earlier, after a nerve block, my PMU team had gotten rid of one of my types – or layers – of pain; the feeling that the fingertips of my right hand were constantly being rubbed with fine-grain sandpaper – almost all the time. After the infusion, that feeling came back, but worse than before. It was very disappointing.
After I explained this to the nurse, she was silent for a just moment. Then she very quietly, very kindly, said: “Well, that’s not good. I’ll give my report to the doctor, and suggest that he should see you again – as soon as possible – to talk about other options.” And that’s all it took to give me back my hope. While I’d been telling the nurse about the pain that had come back, I’d felt like crying. And I don’t cry very often!
But talking about my disappointment with her had made realize just how bad I really felt. Not only physically, but mentally. I felt a bone-deep disappointment that the infusion had made my symptoms worse, not better. Along with despair – or worry – that the PMU would decide there was nothing else they could try to help me.
For more than 2 years now I’ve been living on hope; hope that someone would be able to diagnose me (one doctor finally did), then hope that one of the specialists would be able to stop the disease from spreading any more than it already had (he did). And hope – through more than 20 medical procedures – that this time it would work; that this would be the one procedure or treatment that would finally get my pain & other symptoms down to a bearable level.
That nurse’s simple empathy, her understanding attitude, made me feel instantly better; she gave me back my hope. As with so much else in healthcare, kindness can make a big difference in a patient’s day!