All, Handling Chemotherapy, Managing side effects

Peripheral neuropathy – what is it and top tips on how to manage it

Peripheral neuropathy - foot pain

Peripheral Neuropathy – what is it?

Peripheral neuropathy is a condition caused by damage to the peripheral nervous system – the nerves that are responsible for touch, muscle control, and automatic body functions such as blood pressure and bladder function.

Whilst diabetes and alcoholism are the more usual causes of peripheral neuropathy, unfortunately when it comes to cancer, it is also a common side effect of certain chemotherapy and cancer treatment drugs. Your oncologist will tell you if your particular medication is likely to cause it, and if it is a named side effect then studies show that unfortunately there is a 50% chance that you will experience symptoms. These may be temporary and ease over time, or it may become a permanent long-term side effect. The frustrating thing is that there is literally no way of knowing which it will be.

Peripheral neuropathy - what is it and top tips on how to manage it

My peripheral neuropathy was quite severe – by the end of my second paclitaxel cycle I had virtually no feeling in my hands and feet, except almost permanent pins and needles, everything felt weird to touch, I shooting pains up my legs and could barely hold a pen, let alone do up small buttons.

Walking was painful, and I permanently felt like I had just walked 10 miles in too-tight high heels, even though I practically lived in trainers and ugg boots at the time. So my oncologist reduced my dosage for my final two cycles. The symptoms remained but did not get any worse.

Six months post-chemo and I had regained most of the feeling in my hands, but my feet were still pretty bad and I still had a lot of shoes that (much to my despair) I just couldn’t wear without it causing a lot of pain.

Two and a half years on, and the symptoms have almost completely disappeared. The tips of my fingers are still a little bit numb but I have full motor control back, and I don’t have the weird sensation of touching things without being able to fully feel it. I notice that my hands are still very sensitive to both cold and hot stuff (even just taking hot toast out of the toaster!) but this is perfectly manageable, and is a great reason to get other people to do the cooking! My feet are OK most of the time, although I notice symptoms flare up when it is really cold or if I wear high heels or tight shoes too much.

Peripheral neuropathy - what is it and top tips on how to manage it

I have resigned myself to mostly wearing flat shoes, or chunky platform heels. If I do wear stilettos, then I make sure that I wont be on my feet too much, have flat shoes in my bag for the journey home, and wear flats for a few days before and afterwards until symptoms go away again. My new normal. I would say it took about 18 months after my last chemo to get to this stage, some people may get there faster, others not at all.

As is the case with all things cancer related, my story is not your story. However, whether your peripheral neuropathy is mild or severe, short-term or permanent, I hope this article helps you understand what it is, and some tips to help you deal with it if you have also been affected.

How to tell if you have peripheral neuropathy

Common symptoms to look out for include:

Peripheral neuropathy - what is it and top tips on how to manage it
  • pain in the hands or feet
  • tingling or burning sensations in the hands or feet
  • loss of sensation/numbness in the hands or feet
  • shooting pains in the hands, feet or legs
  • difficulty picking up objects and/or loss of grip strength
  • difficulty with tasks that require fine motor control e.g. doing up shirt buttons or writing
  • loss of balance
  • clumsiness/tripping over your feet
  • very hot or cold hands or feet
  • constipation

What to do if you think you have peripheral neuropathy

Obviously, if you think you may have peripheral neuropathy, the first step is to speak to your medical team.

If you are still having chemotherapy, then they may well look at reducing the dose as a first point of call. Although this is worrying, the treatment can still do it’s job. If it is very bad, then your oncologist may suggest stopping or changing your treatment plan, in order to prevent permanent long-term damage. This was a conversation that I had with my oncologist, but personally I wanted to complete the course, which is why we reduced my dosage by 30% for the last two cycles.

I did worry about reducing the dosage – concerned that it might reduce my chances of beating the cancer. But if it provides any reassurance, even though my treatment was reduced, I still received a complete response to chemo (ie all the cancer was gone by the time I finished chemo) and many others still get an excellent result from reduced dosages. So if they suggest this for you, then please don’t worry, the doctors really do know what is best for you, and will always propose the best option for you based on your personal situation, diagnosis and how you are responding to treatment.

Can peripheral neuropathy be prevented?

Here are some things that may help protect against nerve damage from chemo:

  • Cryotherapy – there is some (limited) research that shows that wearing frozen gloves or socks for 90 minutes during treatment can help reduce the symptoms of neuropathy, and some hospitals now have special cryotherapy gloves/socks that you can use if this is something you would like to try. Ask your medical team if this is an option, if not then you can wrap your hands/feet with ice packs to achieve the same effect
  • Vitamin E
  • Calcium & Magnesium
  • Some antidepressants (available on prescription)
  • Some anti-seizure drugs (available on prescription)

Speak to your medical team about potential protective remedies, and as is always the case, don’t take anything without letting them know first to ensure there are no interactions with your treatment.

Managing the symptoms of peripheral neuropathy

Extremes of temperature can make the symptoms of peripheral neuropathy worse, so if it is cold out, make sure you wrap up warm with gloves and thick socks, and avoid really hot baths. This said, a (not too hot) bath or even just a foot soak with Epsom Salts can help provide welcome relief.

Peripheral neuropathy - what is it and top tips on how to manage it

Tight shoes and high heels can make symptoms worse, so at risk of sounding like your mum, well-fitting sensible shoes with a good supportive insole can make the world of difference, and if your balance is off make a much safer option! A custom moulded insole (available from specialist running shops) can really help too, making sure that your foot is fully supported inside your shoe, and helping where there may be numbness or loss of sensation.

Peripheral neuropathy - what is it and top tips on how to manage it

Massage can offer temporary relief from the pain, tingling and numbness. It relieves any tension caused by your muscles tightening up due to the pain, which can make the pain worse, and it also helps increase blood flow and circulation which can help the damaged nerves repair themselves over the long-term. All of which sounds like an excellent reason to demand a foot rub or hand massage!

Peripheral neuropathy - what is it and top tips on how to manage it

Loss of sensation does provide some challenges, so be careful when walking barefoot, picking up hot pans (I say this from bitter experience) or getting into hot baths. The last thing you want to do is add scalds/burns to your troubles.

Diet and fitness are an important aspect of physical wellbeing through cancer, and help manage a whole host of symptoms and side effects – peripheral neuropathy included…

Peripheral neuropathy - what is it and top tips on how to manage it

Exercise gets your circulation going and increases blood flow, which in turn can help to relieve pain and repair damage. However, if your balance is affected, or you are struggling with coordination, you may want to try lower impact options such as yoga, low impact aerobics or swimming.

A healthy diet full of vitamins and minerals can help, along with taking a good multi-vitamin, to make sure you are getting all of the nutrients you need can help as symptoms can be made worse by vitamin deficiencies. B12 in particular can contribute to symptoms so it is worth getting your blood levels checked to make sure this isn’t making the situation worse.

Peripheral neuropathy - what is it and top tips on how to manage it
Selection of healthy food. Superfoods, various fruits and assorted berries, nuts and seeds.

Finally, acupuncture, biofeedback therapy and reflexology can apparently all help relieve symptoms too, and there are also medications available on prescription that can help if you are really suffering.

Whether your neuropathy is short or long-term, I hope this article gives you some hints/tips on how to manage it, reduce it’s impact on your life, and help you find your roar – albeit maybe in flatter shoes than before!

For more information about peripheral neuropathy check out the following links:

https://www.nhs.uk/conditions/peripheral-neuropathy/treatment/

https://www.macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/peripheral-neuropathy

To see if the drugs you are given could cause neuropathy, this list by cancer research lists all the cancer drugs available with common side effects:

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs

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