Anxiety about Chemo Induced Peripheral Neuropathy getting worse in the winter months.

Hello Maria

I was left with peripheral neuropathy after chemo. It was a different type of chemo to yours but it doesn't seem to make a lot of difference. Mine started with tingling and numbness in my fingers and toes from the first chemo. My doses were reduced but the neuropathy progressed. 

My chemo finished Aug 22. They do say that it can improve but it was not the case for me. Mine is now below the knee and hands and wrists. Sometimes its pain, sometimes burning sensation, sometimes numbness, tingling, spasmy pains. I feel it everyday, my lower legs have a sort of crampy like ache most of the time. The cold seems to be making it worse. My toes feel "prickly" 

Warm gloves and socks help me. Doctor prescribed amitriptyline but I didn't like how it made me feel. There are other meds that can be offered so it's worth asking. The meds will not cure it but will help with the pain sensations. There are creams as well but I have not used them.

Exercise helps. Sometimes it takes a while to get going but on the days that I don't go for a walk etc my legs are worse. I bought some prickly plastic balls from Amazon ( like the ones for arthritis) and I have used them as anything that will get the blood flowing to the nerves should help. I try and do a lot of fine motor things like knitting, jigsaws etc- anything to keep moving helps. 

Interestingly I do feel cold all over my body but not something that I have associated with the neuropathy.

You are not whinging over nothing. It is a well known side effect from chemo and although it can get better, it does not necessarily do so and if it does improve it seems to take time. 

Mine seemed to settle around a year post chemo. It hadn't got better but it hadn't got worse. 

In the end I did a consultation with my GP and it really helped. Just talking about it and him taking it seriously. Although I still have it, it's been acknowledged and treatment suggested. 

Hope this helps a bit.

Jane

Dear Jane,

1. You have very kindly already replied to me under a different subject heading and you have shared quite a few good ideas to help me that you have discovered over the last year.I'm sorry that now almost 6 weeks later you have not got any better and that I have got worse.I just can't seem to deal with this, I suppose mainly because it came as a complete shock as I had never heard of it before.
2. Today I bought some maximum warmth boot socks from M&S and they are keeping my feet warm this evening although I have had to put the heating on!
3. I am just so anxious Jane and I would like to talk to my G P as you have as the Oncologist who finally rang me was not at all sympathetic and almost dismissive.My GP is lovely but I feel I shouldn't take much of his time up.I will probably next month if things continue to get worse.How long did your symptoms take to get to where they are now?
4. Thank you for your reply.
5. Rita

Morning ladies. Apologies if I’ve posted this before but there’s a couple of links in it that might be helpful? 

 Managing Peripheral Neuropathy 

This is obviously causing you a lot of stress and anxiety Maria so please don’t feel like you’re wasting your doctors time?

Take care

Karen x

Thank you Karen for sending the link for  Managing Peripheral Neuropathy.I ĥave read through quickly all of the exercises, suggestions etc.and I will certainly try a range of them when I can plan my day around them.I often do some of them already but don't have a regular routine which I would like to do on a daily basis.Drinking 2 litres of water and eating spinach are the 2 things I manage everyday as well as walking as much as possible.

Thank you again and I will definitely make the effort.

1. May I just say that I just read your cancer history and after so many years of cancer treatment with awful problems and complications I am really happy that you are now  cancer free.Well done.You are obviously very brave.

Hi Rita- yes I remember you now. I think it is worth speaking to your GP and you are not in any way wasting his time. Yes, they are busy, but this is important. My symptoms started after the first chemo. I have just had a check up, 1 year post treatment. My symptoms are pretty much the same - not worse, not better but I can sort of manage them. I am not taking any meds for it. Just doing the things I mentioned before. I am finding when it is colder my hands and feet are more achy. 

Your symptoms have got worse, that is a very good reason to speak to your GP. Good Luck

Hi Maria D 

I can assure you that you are not alone in this rather unforgiving and uncertain peripheral neuropathy battle.

I'm still battling it too and yes, mine is also worse with the extreme cold weather.

Sending a CIPN buddy hug

Thank you for your reply crumpetsortoast.I am sorry but I have only just seen it.I am slightly worse than I was although I do not get the very cold or very hot feelings in my feet.They are just more numb and the toes feel very buckled as if they are all scrunched up in my shoes.I am also getting nasty feelings as if a needle is being stuck into my toes but not very often.How are your symptoms now.I hope they are not too bad and maybe even improving?

Hi Maria D 

I have found physio slightly help sensation and movement in my feet and balance but overall neuropathy issues are still very much present. I have been warned it may be permanent, however I remain optimistic it won't be.

Nerve pain medication has also assisted numbing some of the pain.

1. Hi Crumpetsor Toast.May I ask what medication you are having?I said yesterday that I wasn't experiencing cold or hot feet .Not true today my feet have been frozen all morning and now burning .I am finding this all ready hard to deal with and am extremely depressed.So m6ch worse than I ever expected and no help from anyone in the medical profession.

 Maria D 

Medication is very subjective to each person's own medical history and other conditions but I hope this article from NICE is helpful:

https://bnf.nice.org.uk/treatment-summaries/neuropathic-pain/

Some may help with depression and nerve pain in one go. About 1/3rd of the way down the page it talks about tricyclic antidepressant drugs.

Your GP should help you choose whether pill or topical medication is suitable and appropriate for you.