(Caveat: this post and this blog do not constitute medical advice. I'm just recounting my experience in case it's of value to you or to someone you love.)
What's Lovelier than a Shower?
I used to take two showers a day: one in the morning, before work, and another after working out. When I stopped going to work, and when my disease made me stop working out the same way, I often settled on one shower before bedtime. Like most people, I loved showers.
Then one evening I took a shower, went upstairs to read, and went crazy.
My body started itching in a new way--tiny pinpricks all over. A prickly and very intense sort of itchiness, spaced like the bumps on a cucumber. This particular time it was mostly my legs, but also my chest and arms. I rubbed and scratched like a mad man, but it didn't help, except for that moment when my hands were passing over my skin. Then one area would settle, but only until my hand was gone.
I figure I took my shower at 10:30. I was still itching and moaning after 2 am. Eventually I fell asleep.
In the days that followed I learned I was experiencing something called aquagenic pruritus, that is sometimes associated with both MDS and CMML. (My doctor disagreed. She said it was associated with CMML and not MDS. My diagnosis was already leaning in the direction of CMML. I can only say that I found a scientific paper linking it to both diseases.) Her advice, and the advice of those I found online, was to take cool showers. Easier in summer than winter, I've learned. People also recommended various lotions and antihistamines. I tried them all. One anti itch lotion called Sarna, works a bit if the itching is mild. Otherwise, nothing helped.
The same thing happened again several times, though usually not as severely. The itching could also appear without a shower. And though I have feared a hot or warm shower ever since my first experience, it also hit with cool and cold showers--so showers have become a frightening experience, a rolling of the dice.
Finally I sunk to the depth of asking our new friend, AI. AI told me that one possible solution was gabapentin.
I actually had some gabapentin. It had been prescribed for a different ailment--a nerve issue--and didn't work, so I never used it. Then one night the itching went crazy, and around midnight I remembered the AI advice and took three capsules-- the upper limit on my prescription. With 20 minutes I could feel the itchiness fading. Within 40 minutes it was replaced with a blessed and warm absence of pain.
Grain of Salt Time.
If I understand it, (and I likely don't; this is not a scientific blog and does not constitute medical advice of any kind, just my experience) the itchiness is caused by excess monocytes crowding around tiny nerves in my skin and irritating them. Gabapentin is for neurologic pain. It works for me. If the itchiness seems mild or transitory I try to get busy and ignore it. If it gets bad, I take two gabapentin, and it usually does the trick. In about 40 minutes the itchiness begins to disappear. A downside during the daytime is that it makes me sleepy. At night, that's a blessing.
But I now fear showers. Mine are quick. I no longer shave in the shower, (a lifelong habit) and I wash my hair in the kitchen sink to speed things up.
It's a loss--a significant one.
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