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Triggers

Posted: Mon Sep 17, 2018 9:35 pm
by RulaLenska
Triggers of the painful variety. I noticed my first trigger last summer. I was still on the 5FU pump. I would get a bollus prior to the 46 hour hook up. Twice my pump malfunctioned and I also received a bollus prior to disconnect. This triggered an extremely painful bout of hand and foot syndrome that was very heat sensitive. It lasted a couple of months and made my neuropathy seem minor in comparison. During the heat of summer. I couldn’t drive because I couldn’t handle the steering wheel and I couldn’t wear shoes. I actually considered stopping treatment. Dropped the 5FU and it eased. I had a colectomy in November, a PVE in May, a liver resection in June, and a cryoablation on a foot neuroma a month ago. An Issue I was unaware of is that anesthesia can exacerbate neuropathy. It was after the last procedure that my neuropathy went mad. I wish I had the numbness and tingling but alas I have the awful pain. Freezing burning throbbing. And it climbed to my knees and returned to my fingers with a vengeance. I’m seeing another specialist this Wednesday. The good news is I’m NED and chemo free for the foreseeable future! This is unbelievable to me. As soon as I find some relief for my fingers I will contribute more here. I took extra meds so I could peck this out.
I don’t know if it’s any one particular anesthetic that triggers this increase. Not enough research goes in to CIPN. Anyone have a similar experience?
Peace and health
Cyn

Re: Triggers

Posted: Mon Sep 17, 2018 11:17 pm
by AppleTree
Congrats on NED. I am sorry about your extreme neuropathy. My DR constantly asked me about mine. I am a knitter. I knit all through chemo. When I could no longer hold small sock needles, I started knitting chunky scarfs with large needles (11-13). I really think that the finger gymnastics of knitting helped keep the neuropathy at bay. I also walk every day. My feet are a bit worse. Sometimes I try marching and stomping my feet for short periods of my walk. Who knows if it will work, but at least I am trying.

Re: Triggers

Posted: Tue Sep 18, 2018 1:32 pm
by MissMolly
Speaking generally, a rise in body inflammation will tend to an increase in how neuropathic pain is experienced.
Karen

Re: Triggers

Posted: Tue Sep 18, 2018 7:46 pm
by RulaLenska
AppleTree wrote:Congrats on NED. I am sorry about your extreme neuropathy. My DR constantly asked me about mine. I am a knitter. I knit all through chemo. When I could no longer hold small sock needles, I started knitting chunky scarfs with large needles (11-13). I really think that the finger gymnastics of knitting helped keep the neuropathy at bay. I also walk every day. My feet are a bit worse. Sometimes I try marching and stomping my feet for short periods of my walk. Who knows if it will work, but at least I am trying.

I’m normally quite active but I’ve been hobbled by the neuroma and now the increase in neuropathy. My oncologist thinks this major increase in pain was from having anesthesia twice in a relatively short period of time. I actually needed a wheelchair for a few days. My thumbs are worse than my fingers so I have to be mindful of picking things up. Hopefully my pain management doc will have some new ideas. I’ve done all the usual meds, acupuncture, physical therapy, and exercise. I don’t expect a miracle I just want enough relief to be independent again and maybe sleep through the night once in a while!
Happy knitting!
Cyn

Re: Triggers

Posted: Tue Sep 18, 2018 7:53 pm
by RulaLenska
MissMolly wrote:Speaking generally, a rise in body inflammation will tend to an increase in how neuropathic pain is experienced.
Karen

I am aware of the increase from inflammation but hadn’t heard of an increase triggered by anesthesia. Pronounced and prolonged. I’m really hoping for a decrease.
Fingers crossed
Cyn