Desperate for help with neuropathy

[Amilliondreamsisallitagonnatake]

I’m suffering with worsening neuropathy in both my hands and feet a couple of months after finishing chemotherapy. As I understand there isn’t much that can be done to limit the damage or improve it. I’d like to know if anyone has any suggestions on things I can do - exercise, supplements, non traditional medicine or indeed anyone who specialises in treating this?
I’m so anxious about this worsening and feel really helpless

Amitriptyline works to dull the pain for me.

Referral to a specialist pain clinic for medications management
could try qutenza patches (within pain clinic)

My OH has this in his feet after lots of chemo. The hospital gave him Gabapentin which didn’t really help. After that they gave him Duloxitine, that didn’t work either and it’s extremely hard to get off of this drug and come out the other end unscathed.

He’s tried creams and potions, special socks, he went to have his feet massaged every week. Nothings worked really, he just gets on with it now.

Go back and see your consultant and see if they have any other drugs of suggestions. Good luck OP.

My consultant recommended B12 supplements to help reduce neuropathy after my chemo finished.

You can’t overdose on B12 as long as you stick to rda so it might be worth taking them at the same time as anything else you try…..

Hi, OP -

I am sorry to hear this. DH shares your problem.

He gets relief from amitriptyline used carefully, elastic socks, and certain magnesium creams and gels. The best of the latter are expensive, but really loaded with magnesium.

We’ve also heard that soaking in a bath of Epsom salts can help, but he doesn’t like baths.

I use amiltriptyline, magnesium and B12.
Also Pregablin which leaves me very subdued/doped up and already have brain fog so try to only use it when it's extreme.

Magnesium spray is also a help.

B12 .. l si every week.. take folic acid for absorption.. you can't Overdose.. what your body doesn't need comes out in your urine.

I was on amytriptiline for a few years but switched as hated the side effects. Now on pregabalin which suits me much better. The pain is now manageable if I take care to keep my hands, head, ears and feet warm. I wear gloves in the supermarket, use tongs to get things out of the freezer at home etc.
A tens device for my hands was no help at all. Nor were supplements.
I never leave the house without gloves, even in the summer
From a mental health perspective I am prone to depression in autumn as the weather gets colder and the pain increases. I take extra care of myself during these times and took a sunny holiday last October half term which helped.
Other than that I focus on the positives: I may be left with neuropathy but am cancer free and seeing my children grow up
Wishing you all the best x

I have this.

the usual treatment is SSRIs but they are very very variable from person to person so you ma have to try several to find one that works for you.

gabapentin and pregabalin are options. Amytriptyline I found works for me and it helps me sleep if I take it at night.
I have been on duloxetine in the past when I was so anxious.

general advice of keep vitamins up etc so taking a multivitamin.

i also took up cold water swimming which I found helpful but not everyone does.

I take gabapentin. I'm not sure tbh if it helps or if I hope it does.
I second a pp about keeping feet and fingers warm.
I did try acupuncture but it didn't make much difference to me.
Some days are more painful than others but I try to stay mobile to help my feet.
To help my fingers I've started learning the piano- I'm not very good but it certainly takes my mind off the constant discomfort as I'm busy concentrating!
I'm 18 months post chemo and mainly resigned to it but I'm glad to still be around.

Someone recommended toe socks and I don’t know why but they are amazing. Make such a difference. I hate the way they look though. I take nifedipine, do Qutenza patches and have a B12 prescription too. Gore tex or full leather shoes help my toes in wet or windy conditions. I have a foot spa to help ease the pain.

I always have a number of pairs of gloves on me in different thicknesses.

Good luck OP it’s miserable.

I tried pregabilin but piled on a fair bit of weight. Sigh

I have this since chemo. However mine is much improved since I started having reflexology and acupuncture weekly. If you can only do one, do acupuncture but get someone to massage your feet. Also I roll my feet on a spiky ball every night for 10mins.

Anyone who uses magnesium can you advise on how? I haven’t heard of this before. Tablets or creams.

(goes off to order some toe socks)

I use snow boots in the winter. They’re meant for post ski-ing walking through snow but are lovely and warm.

Try acupuncture. My local hospice offers reasonably priced complementary therapies like acupuncture and reflexology to people with life-limiting conditions.

4 years after chemo I still suffer with feelings of numbness in my right foot.
I did have feelings of numbness in my hands and both feet but this has mainly gone. I used to feel whole body vibrations too.

Just be aware acupuncture isn't a quick fix and you may need to budget for regular sessions. I notice the impact it has when I don't go regularly.

DH buys a cream at Holland and Barrett or the local health shop. He uses it under his elasticated socks at night.

Sometimes a vigorous massage sets off his cramping so he rubs it in but doesn’t particularly massage deeply. You are supposed to do the latter.

Effectiveness depends on the amount and type of magnesium. Best ever was a super expensive gel from Berkeley,CA. The H&B stuff is okay - if he liked it better I would recommend it. I think going online and looking for something with excellent reviews might be a better idea.

Id also recommend Amitriptyline

Hope you don’t mind me commenting later on, but I remembered this thread! I’m about 7 years out from chemo and my fingers still get a bit numb, I was seeing a acupuncturist about something else this morning and mentioned it and she’s given me a little Chinese ring thing that she’s told me to just fiddle with on an evening and see if it makes any difference! I’ll report back.
ps im also on Amitriptyline but only the last month as I’ve hurt my back! also use magnesium baths as well!

Hi again, @Octavia64 -

I am sure you have thought of this, but on a public forum I feel obliged to be clear: one needs to let the magnesium lotion absorb fully before putting on the socks. BW