ideas on managing Chemo induced peripheral neur... - My Ovacome

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ideas on managing Chemo induced peripheral neuropathy

Mommoo65 profile image

Hi ladies, and gents. I have a question to those who suffer from neuopathy. How do you manage or sooth it? Mine isn't horrible but is definitely stopping me from a lot of activities because I'm going to pay for it later that night. Everything I read is about B12 deficiency.. I take plenty of B vitamins.. or to walk 30 minutes a day.. If I walk a lot I get cramps, restless legs, and pain when I settle down for the night so I do chair exercise 3-4 times a week. That's easy on the feet.

I take blood thinners so cannot take any anti-inflammatory drugs like ibuprophen. I do take extra strength acetaminophen when needed. It does help at night. Hot foot baths help temporarily.. But any other suggestions? Thank you all for being there for anyone who needs help, encouragement, or just a virtual hug. You guys have been there for me for four and a half years. I love you all and thank my higher power for you every day.

Oh, I wanted to ask about footwear. I live in thick socks at home and slides if I go out. My sneakers leave my feet hurting. What footwear helps? Hugs, Jill

16 Replies

Hi Jill. I am in the same position as you - painful and restless legs that cramp easily, taking all the vitamins I can (on blood thinner as well), etc. It's hard to find anything that works. I have found some success with Icy Hot or any cream that has mentholated or other lidocaine like element - so it both numbs the area and also brings some warmth to it. After a particularly active day (when I know my legs will be bothersome and painful in the evening) I rub this on my calves and feet (bottoms of feet as well). It is warm and a little tingly at first, but on most evenings, it helps enough for me to sleep comfortably.

On rare occasion, I will do this during the day but because of the "fragrance" I don't do it often when going anywhere more formal or official.

It's an inexpensive try....and can do nor harm. Hope it helps you.

Best wishes.

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Mommoo65 in reply to

Thank you! I have a product called Willow Balm that is delightful. It doesn't work for long, tho. I will definitely get some icy-hot. Usually, if the tingling/pain/cramps calm down long enough to get to sleep, I'll sleep most of the night. The foot massage part of putting a good cream on is a plus!

I feel your pain! I have a prescription for gabapentin, and taking one at mid-morning and one at night helps. As you mentioned, warm foot baths, massage and numbing creams are useful on a particularly bad day. For me, it seems there is a limit to how much activity or standing I can tolerate without suffering later so I have to pace myself. Sleeping with legs elevated seems to help.

I find the best shoes for me are sneakers with knit fabric tops (not leather) - the more flexible the better and in a wide width, combined with thin, soft, non-binding socks. Around the house I generally wear warmer thicker socks, again non-binding, and I often wear similar socks to bed after applying cream or lotion, loose enough to be easily kicked off later.

Recently I've been trying acupuncture specifically for the neuropathy and it seems to be helpful but it is not a cure. My acupuncturist says that you can generally determine whether you will be benefitted by acupuncture for your neuropathy within 8 weeks or so (1 visit weekly). Hope some of these suggestions are helpful for you. It's an affliction. Best wishes! Deb in Colorado

Dear Mom,

I do not have restless legs, but I do get horrible cramps in my feet, calves and hands.

I also have peruferal neuropathy in my feet that makes them feel as though they are full of crumpled newspapers.

Magnesium is the culprit for cramps for me and Taxol is the cause, as it saps it right out of your body.

I am prescribed Magnaspartate Sachets, and I mix 2 sachets in a litre of water and juice and drink that throughout the day- and the cramps disappear. If I miss a day, the cramps come right back.

For my feet, I tried supplements, to no avail.

So I wear cushiony slippers at home and UGG or BearPaw boots out, which I buy on eBay, so are cheaper.

I also have very cushiony sandals from Clarkes for the few hot days we get here in England.

Hope this helps,

Laura

I’ve had my peripheral neuropathy since my treatment (carbo/taxol) finished just over 5 years ago. I have tingling and pins and needles both in my hands and feet with some shooting pains, it also travels a little way up my legs and arms. I also have night cramps especially in my ankle joints and up my shin bones and sometimes during the day I get it in my thumbs 😬. Magnesium does help with the cramps, I’ve not yet found anything that really relieves the neuropathy. My oncologist said gabapentin could lessen the symptoms but that it can be soporific, trade off I guess.

In my case the more I walk or use my hands like knitting etc the better my symptoms are. If I sit around for any lengthy periods I lose feeling in my extremities and then when I move about the neuropathy symptoms return tenfold.

I cannot go barefoot as the sensation in my feet is quite bizarre, it feels like my feet are ten times bigger than they actually are and my bare soles feel like I’m stood on gravel even when I’m sitting down, talk about altered sensations, weird. Showering can be problematic I don’t particularly feel safe stood in running water, bathing is easier but getting both in and out of a bath has its challenges even with safety mats.

We’re a weary bunch aren’t we? I’ll take the neuropathy though over some of the other issues out there in our lovely community. We adapt, we learn and, hopefully, we’re able to get on with with it, pitfalls included.

Love and best wishes to you all on a rather blustery January Monday morning ❤️Xx Jane

Hi. I was the same after frontline and tried acupuncture. It took months to do any good but after about 7 months the neuropathy improved. Then I got a recurrence and it’s starting to get worse again. I found wearing sturdy shoes with good arch support helped me. I have to walk my dog twice a day come hell or high water (which has been good for me psychologically). What I found the worst was standing for long periods like painting or cooking. It does take nerves a long time to regenerate so maybe it will still improve.

Hi, over 12 years on and the neuropathy in my feet did improve but never totally resolved. Originally it affected the whole of both my feet but now is just under the front half of both feet. I think because it was such a long time ago I have just got used to living with it. I go barefoot as much as I can, that's probably because I have always preferred being barefoot and hate even wearing socks! I find the longer I walk the worse the feeling (or rather lack of feeling gets. ) I do still get shooting pains in my legs occasionally but again that is brought on by walking a lot. xx

Hi Jill,

I posed this same question a few months back and received some helpful suggestions as you have been getting. Not mentioned yet is

alpha-lipoid acid tablets. It helps with nerve damage caused by chemotherapy. I take it along with Vitamin B12. My neuropathy is not necessarily better, but I have experienced a level that makes it more tolerable. I am less than 6 months past frontline treatment so fingers crossed that I continue to improve (even if ever so slightly). I am back walking 3+ miles on treadmill with supportive shoes. I see this as my new ‘normal’.

Wishing you pain-free days ahead. Just knowing others are experiencing your same difficulties makes things bearable.

I have had neuropathy in both feet since February 2016 and have found Skechers shoes to be the most comfortable and supportive. I also found rolling a tennis ball under the ball of each foot did make it feel more comfortable. The continuing problem I have is that unless I can see where my feet are, I don’t know their position, meaning that I can easily trip over because I don’t realise there’s an obstacle.

Hope you can find something that works for you out of all the suggestions given by forum members.

All the best,

Barbara x

I went to city of hope they have a 10 day program, they attach small electrodes to hands and feet for 1 hrs. Helped

I am three years from my chemo and doing well, fortunately but the neuropathy has not gone from my feet. My hands are fine but still get numbness and pins and needle sensation in my feet. I get a lot of cramp at night which I cannot find a solution for. Tried acupuncture but that didnt work. I am quite active and the problem doesn't stop my activities thank goodness. I often wear bed socks at night as my feet feel cold but when I touch them they are warm! Am learning to live with it and if I stay cancer free then happy to put up with it.

Georgina x

I use Clarke’s unloop slip on shoes (nearly all the nurses use them) here in the U.K. as it’s like walking on clouds but supportive too. Not elegant though! That’s really important when you can’t always feel your toes or part of your foot. They are part of the unstructured range and they do sandals too.

I know you can get them on line.

Very best of luck with this difficult situation, I do notice it has improved over time.

Best wishes Alex

ALA (alpha lipoic acid) and l-glutamine should help. There was someone on here who sadly has passed on who talked about this helping a lot - she took them during chemo as well as after. This link clinicaltrials.gov/ct2/show... for l-glutamine was a study done for women who had taxanes (paclitaxal) during their treatment for breast cancer, and this link ncbi.nlm.nih.gov/pubmed/155... is a clinical study of the effectiveness of ALA in diabetic neuropathy, but it should also help for taxane induced neuropathy too.

Miriam

Hi Jill, I have a neurological disease HSP as well as OC stage c so a double whammy to deal with. I'm on blood thinners so can only take paracetamol or codeine. Codeine can be a problem with constipation when receiving chemotherapy so I stick to paracetamol and Gabapentin. I suffered from restless legs for years until a Neuro specialist suggested Clonazepam about 3 years ago. I haven't had restless legs since. Nothing can cure my neuropathy as it's for life. Hopefully you will get your mobility back very soon. Your GP should hep with your medication. About footwear, I can't walk at all without aid and my feet are very swollen so I wear Cosy Feet shoes. Not very pretty but in my case a necessary evil.

Wishing you all the best.

My love to you

Angela xx

I just had my 4th chemo of taxal/carbo last week. So far my fingers, hands, feet & toes are good and no signs of numbness or tingling. I walk every day because we have a golden retriever who likes to run out in the country. Also we live in a 4 level split house which means, 3 staircases. I am constantly up & down the stairs. I keep my hands & fingers busy with hobbies so I am getting exercise all the time.

I take a B12, B6, Vitamin E and vitamin D every day as that is what the cancer doctor recommended. I wear Skechers slip-ons in the house and walking shoes with a good support for long walks. I am also on blood thinners - pill form.

Since I started my chemo back in Nov, each day I put the TENS unit on my feet for 25 minuets. It helps with my Edema in my left leg and seems to keep the peripheral neuropathy away. I checked with my cancer doctors & they are OK with using it. Always check with your doctors before using something new.

The TENS is similar to a Dr Ho if you don't have it in UK.

TENS is a transcutaneous electrical nerve stimulation device that sends small electrical currents to targeted body parts.

Hope this helps. It works for me.

HI Mommoo, How are you getting on ? hopefully the replies will have given a few helpful answers...I similarly have neuropathy in feet and very often have knee leg ankle and "stiffness" pains at night...walking to begin with each morning, like a stiff old witch from Hansel and Gretel.

A strange thing I noticed that even although going downstairs can mean extra care . and the numbness comes and goes ( maybe more often noticed than other times),I went to cancer charity ball a couple of months ago, and did not have any problem dancing my feet off. Also although Im largely and boringly teetotal these days I had quite a lot to drink !! No I didn't fall over on the dance floor, so I dont know what the answer is .... a hot bath is always more relaxing generally but for very troublesome pains I take Brufen retard 800 and add a couple of paracetamol at night if Ive got the twitches...

Im currently in Auckland and after chemo etc.,18 months of very poor sleep interruptions 2/6 times a night Ive had 2 amazing sleeps all night .. no pains or numb/twitches... both times I had soup late at night with turmeric and ginger in them... one was chicken soup one was Japanese ramen..Home made... It sounds bonkers but I truly think it was the anti-inflammatory effect of the turmeric root..

Sending you my best wishes, from a fellow sufferer, and as I write Im wriggling my numb toes and feet, to get going and check on the cheese buns which should have risen by now ready for the oven !!

xxDenise

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