So I appear to have the “hand” part of hand-foot syndrome. It’s a relatively mild case, as hand-foot syndrome can be so bad that it’s painful to touch anything with your hands or impossible to walk. In my case, it’s just in the hands. I’ve got the tight skin, tingling and burning, and extreme sensitivity to touch. But it’s also been different every day this week. You saw the account from Monday. Tuesday it was different, yesterday it was different, and today it’s different (actually, today it’s better–at least so far).
As is my practice, I have thoroughly intellectualized the feeling in my hands, treating it as an opportunity for sensory exploration. Carrie is calling me a “super toucher” and indeed, my hands are incredibly sensitive to textures. Yesterday I was going around touching things to see how they felt. I have made a list of some of my discoveries:
Feels Terrible:
- Towels, textured sweatshirts
- Tortilla chip surface
- Round wound bass strings (SEE EXCITING UPDATE below)
- Textured steering wheel (yes, this is a theme)
- Keys to my apartment
- Washcloth, hot shower
- Wool blanket
Feels Ok:
- Cotton shirt, sweatpants
- Tortilla chip covered in cheese
- Low tension flatwound bass strings, synthesizer knobs, Linnstrument surface
- Pens, tablets, iPhone, computer keyboard, trackpad
- Bar of soap
- Cotton sheet, comforter
Feels GREAT
- Glass of ice cold water (not textured, preferably a pint)
- Petting cats
- Eucerin hand creme (get the creme, not the lotion)
- Cool shower, washing hands with cold water (but apply lotion after)
So, in sum, if you have hand-foot syndrome, wear smooth clothes, hold glasses of cold water, take cool showers, go nuts on the Eucerin, and pet cats as much as possible.
Also, it turns out I do a lot of things with my hands. Today I have considerably less discomfort. I’m wearing the same textured sweatshirt I put on yesterday morning and it’s not bothering me.
Tuesday and yesterday were worse. In addition to the heat, tightness and hypersensitivity, I also had a painful sensation, like a cactus growing outward in all directions from inside my hand. Or was it a glove made of pins and needles? the direction is unclear? The pain was distracting but I didn’t want it to stop me from doing anything. So I didn’t. But I am hyperconscious of my hands, holding them up in the air in weird positions, rubbing glasses or tables, cradling them. It’s like they have replaced my head as the seat of consciousness and bodily orientation.
I queried my Facebook group and the responses weren’t encouraging. It doesn’t appear that not using my hands will make things better. Which is good because I didn’t let it stop me from playing bass at band practice Monday and Tuesday night. Monday night is Volte and by the end of the night the round wound strings on my bass were quite uncomfortable, especially if I slid, muted, or did anything with parts of my hands other than my fingertips. So for Tuesday I restrung one of my other basses with Thomastik Jazz Flats (which are a story in and of themselves) but they have a very non-reactive surface, and they are smooth and floppy. I took it to practice Tuesday and it worked great for Hard Red Spring. The sound isn’t exactly what I want but I don’t think I can afford to be picky when it’s a question of playing vs not playing.
Nobody reports drugs helping much. I’m using this Eucerin creme and it feels great, and greasy. How greasy you ask? So greasy I couldn’t get a credit card out of my wallet yesterday. I have been taking ibuprofen since it’s an anti-inflammatory and am at least getting a good placebo effect from that. Though since I don’t know if it’s a nerve thing or an inflammation thing or something else, it’s hard to know if that’s really the right pain killer to use.
Whatever works. I have no idea if this is my body just adjusting to 20mg of Lenvima or a permanent condition of being on 20mg, but the fact that it’s different every day means I need to reserve judgment. The first go-around in 2010 I learned not to take any non-debilitating side-effect or symptom seriously until it had been around for a week or more. There was a point where it was actually painful to taste onions (or when I lost all taste for sour), and that passed. So I’m just in watch-and-learn with this one for now. Or maybe touch-and-learn.
EXCITING UPDATE: about a week ago when my skin was peeling, I ordered some of these in black. (The white looks too Vaudeville for me.) They arrived this afternoon. I can now play round wound bass stings, and guitar, more or less pain-free. There will be a few adjustments but it’s good news to be sure.