Peripheral Neuropathy

Fortunately my neuropathy has been, overall, more interesting than painful, for which I’m very grateful.

The first couple of days after chemo, I often experience tingling in my feet, as if they’d fallen asleep. My mouth can be a little sensitive, which may be caused by a number of factors. My body in general feels a little numb on the surface: sensation doesn’t register quite as vividly as normal, except for light, which is blinding.

Then over the weekend, after my steroids wear off, my back radiates a mild pain from the spine outwards, between my shoulder blades. Massage worsens it in the short term, although seems to improve it a little bit overall. If I sit very still and avoid pressure points, the pain dials down to nearly nothing.

The following week I get a symptom that’s not painful, but bizarre and annoying: loss of positional sense.

I’ll be sitting at my desk typing, and I’ll pause in my work, and I’ll realize that I don’t have that instinctive sense of where my arms are.

It’s not numbness. It’s deeper than that. A neurological glitch that is nearly impossible to describe to someone who hasn’t experienced it.

Close your eyes. Do you know where your limbs are?

Now imagine that you still have sensation — if you move a limb, or something touches it, you register the sensation normally — but as long as you remain still, the limbs are in limbo; they’re off your brain’s radar. It happens most frequently when I’m sitting at my desk, wrists on my wrist-pad and fingers poised over the keyboard, pausing to think. Movement returns my positional sense, but if I sit still for a few seconds, it’s as if my arms and fingers fade from my brain’s body map.

Sometimes it’s just a distortion of positional sense: my arms and torso might feel very loooong, like Alice’s when she eats the one side of the mushroom. An entirely appropriate literary allusion, if you consider how many drugs are coursing through my body.

But let me tell you, as neuropathy goes, I’ll take the hand I’ve been dealt, quite happily.

This entry was posted on Wednesday, March 4th, 2009 at 6:42 pm and is filed under Daily Post, Hodgkin's Status Update. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

2 comments

maureenmcq:
 1 

That’s very strange and kind of cool–which I can say because of course, I’m not experiencing it. Oliver Sacks talks about something similar and even more profound version of this in A LEG TO STAND ON, but his was the experience that his leg was not his own. I’m sitting here trying to imagine it.

Does it happen in bed?

March 4th, 2009 at 8:29 pm
Beth Adele Long:
 2 

It IS kind of cool. And of course understanding it – even just putting a name to it – helps push it towards “interesting” and away from “annoying.” (Oliver Sacks: bow down. bow down…) Does it happen in bed? Fine question, and I’m not sure. I do get dissonant sensations in my limbs in bed sometimes, but I’ve attributed them more to the Neulasta because it’s a sensation of density, hyper-awareness of the inner workings of my flesh and bones, rather than distance or erasure. But for all I know it’s a flip side of the same coin. I will take notes and report any new findings. :)

March 5th, 2009 at 8:28 pm

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