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Dear neuropathy friends,

Quilter_1's picture
Quilter_1
Posts: 43
Joined: Mar 2019

Dear neuropathy friends, 

What is everyone doing to help with their neuropathy.  I have a slight dullness in my fingertips; but, my feet are wicked.  I am taking gabapentin 300 mg 3 times a day, it may or may not be helping.  My neuropathy is a bit better than it was in the beginning, I no longer get shooting pains up to my knees.  Overall, I feel pretty good most days, if my feet felt better I would be great.  As much as I love my doctor, he seems surprised that I’m still having this problem.  He suggested acupuncture, which I am willing to try.  I asked about alpha lipoic acid, he said that I could definitly try it.  If anyone out there takes ala, how much and how often?  Has anyone had any experience with acupuncture?  Any other suggestions.  I walk and ride my bike several times a week for exercise, and, at night before bed my husband gives me a deep foot massage.  Thanks.

Linda

 

barnyardgal
Posts: 212
Joined: Oct 2017

My doctor recommended 600 mg twice per day of ala, and 2 grams of l-glutamine once per day. Also omega 3.

I ended up being switched to adriamyacin as I was too allergic to Taxol to desensitize. So neuropathy wasn't an issue. But I still got acupuncture as it helped with nausea. 

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

The only thing that worked consistently for me has been CBD oil. I take six drops under my tongue before I go to bed and it has brought my pain level during the night from a 7 or 8 to a 2 or 3. That difference means I can sleep through the night. My feet still feel like bricks but the shooting pains, burning and muscle cramps are MUCH better. It's been 3 1/2 years since my last chemo so I doubt it's going to get better on their own.

Best of luck!!

Love,

Eldri

Donna Faye's picture
Donna Faye
Posts: 240
Joined: Jan 2017

My treatment 20 yrs ago ( citoxin and adremicin) left me with tingling feet. I keep asking every doctor I saw, what is making my feet tingle. It was not until 2008 that my RN son said - Mom, you have chemo induced neuropathy!! I then asked my primary doc and he said "yes" and advised B12. That helped and I rocked along OK. Lucky for me, I can sleep through anything. Then the treatments in 2017/18 ( carbo/toxol then cisplatin) really sent the N way up and also in hands. Added B6 and clartin and for the most part ok. I do not sit for more than 2 hours at a time and got a dog to make me walk more. Right now (noon) my feet are like on fire but I have gotten so use to it that I just ignore it. My doc prescribed gabapentin last month, but when I researched the side effects decided to not take. At 79 I do not need anything that might make me dizzy or lightheaded. I do think N is more troublesome at the beginning but I was able to get use to it and with water exercise and walking, manage it OK. Hope you find that true as time goes by... 

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Linda, I've been sporadic on the board lately - attention span of a gnat and lots of fatigue - so forgive me, but are you still having chemo or are you finished?  If you're still having it, I cannot recommend strongly enough that you ice your hands and feet during infusion.  It made a world of difference for me.

Quilter_1's picture
Quilter_1
Posts: 43
Joined: Mar 2019

I‘m finished with chemo; and, unfortunately no one mentioned cold therapy.  My neuropathy didn‘t begin until sometime between my 5th and 6th treatment.

EZLiving66's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

Same with me - no one mentioned icing my hands and feet. I wish I had found this site right when I was diagnosed. If I knew then what I know now........

Love,

Eldri

Soup52's picture
Soup52
Posts: 901
Joined: Jan 2016

Same here I didnt know about icing at the time either and no one at my cancer center suggested it, but now I find they are, so perhaps it will save some others. Yes, I took gabepentin briefly, but I didn’t notice that it helped at all, so I quit it. Fortunately my neuropathy isn’t as bad as some of yours. Now im very afraid that I may have lymphedema. I am going to be referred to a specialist, so when I find out I’m sure I’ll be posting.

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

I'm sorry that no one mentioned icing to you - I read about it here on this board, thank the Lord, because no one mentioned it to me either.  I developed severe acute onset neuropathy after my first chemo, and couldn't even walk or use my hands.  Then I had a heart event the next day that landed me in the ER.  My doctor was ready to quit chemo, and so was I.  Fortunately, I was able to switch from Taxol to Taxotere, and completed treatment.  The neuropathy disappeared miraculously before my second chemo (my doctor said sometimes when it happens so quickly instead of cumulatively it will resolve, and it did.)  I iced hard the last five treatments, and I have literally zero neuropathy now.  I'm probably known around here for preaching "ice and brimstone" but if it will save one person from enduring the neuropathy, it's worth it! 

jan9wils's picture
jan9wils
Posts: 60
Joined: Mar 2017

I also did not know about icing hands and feet until reading about it on this board last month. I take gabapentin which helped with the burning knives stabbing me in my feet but not with the tingling, numbness in hands and feet or with the cramps. What has helped is alpha lipoic, B6 and B12 and CBD oil. My pain has gone from almost constant to almost non-existent and the numbing/tingling is reduced.  That said, I will never wear high-heels again.

Quilter_1's picture
Quilter_1
Posts: 43
Joined: Mar 2019

I bought some alpha lipoic acid today, how long does it take to begin working?

zsazsa1
Posts: 322
Joined: Oct 2018

I am so happy you found something that helps you.  This is the first time I've seen anyone report that anything actually helped them with the neuropathy pain, after treatment was over.

ncg007
Posts: 132
Joined: Nov 2015

Three years out and still suffering from neuropathy and spine nerve damage caused by radiation.  Mine didn’t start until several months after I completed treatment.  I do have a medical marijuana card, I don’t injest it, but found the creams with both CBD & THC relieves ithe pain. CBD only doesn’t seem to work for me. I also take gabapentin, adjusted the dosage over the years, but that alone doesn’t work. I hope you find relief.

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