Tuesday, 24 October 2017

Sometimes The Best Help For Neuropathy, Is Knowing You're Not Alone

Today's post from titsngiggles.org (see link below and kudos for such an original title for someone living with with breast cancer!) hits the nail on the head for so many people living with neuropathy - whatever the cause. Read it and tick off the points that exactly match your situation! You may not learn anything new from reading this post but you won't feel alone with your condition any more and if only for that reason, it's definitely worth a read.

Neuropathy – terror with a capital N
Posted on October 22, 2017 by Siri Posted in breast cancer, cancer, chemo, neuropathy, taxotere

I’m not really afraid of much, to be honest, and although I sometimes have to face my fears (driving in snowstorms on icy roads) I tend to just avoid stuff where I don’t feel comfortable (roller coasters and great heights). I don’t mind spiders or snakes or other yucky things. I don’t mind that my hair’s all gone and might not grow back (though that’s for another blog).

But chronic neuropathy – that scares the hell out of me.

Neuropathy is the second nasty side effect I get. It comes from neuro = nerves and pathy = sickness, and basically means that your nerves are ill. The physical nerves. The ones that transmit sensations. The ones that cause phantom pain in amputees. The ones that make your nose hurt when you wax your legs.

Neuropathy in the extremities (feet and fingers) is a common side effect for taxanes. Unfortunately, it can also become chronic.

Let me try to explain what neuropathy feels like.


In case you hadn’t noticed, I love my heels. I love dancing. I love dancing in heels. For everyday wear, I’m more boots and sturdy footwear, but for fun, I used to love putting on my heels and sashaying along.

These are my favourite pairs. Were. Still are but there is no way I will be wearing them for a while. If you look at them – I cheat. They have really sturdy soles that are a great support for my feet which means you can dance all night without noticing that you’re wearing heels!

Now, imagine that the soles are really thin and flimsy, you can feel every grain of sand that you walk on. They still look good but aren’t really all that danceable. Yet you go out dancing, with the flimsy soles, all night long, and you wake up with really sore feet cos that’s part of the deal. All your feet want to do is be kept off the floor. But you go out dancing again, and dance the night away in the same flimsy shoes, and the next day you are in PAIN. Every nerve underneath your feet is hurting, and your ankle is kinda complaining, and you seriously regret both the first and certainly the second night of dancing.

But you love dancing, and you want go out again for the third night in a row – but this time, your feet revolt. They can’t take any more. Our bodies are a bit awesome that way – they will refuse us doing stuff that is dangerous. Your hands are having problems putting them shoes on cos feet = pain at this point.

Instead of going out and having fun, you get in the bath cos you can’t really walk. The soles of your feet are burning. The bath doesn’t help, so you figure that crawling instead of walking is a great plan – except you keep hitting the floor with your burning feet. You drag yourself onto the couch and decide to stay there the rest of the night cos at least the pain is slightly less (although you are having problems concentrating cos – pain brain – not much higher cognitive function there). And the couch is almost as comfortable as your bed, to be truthful, and you don’t really need to brush your teeth cos that demands standing – and that is so out of the question.

That’s neuropathy. And if you got it because you danced too much, chances are it’ll fade. If you get it from chemo there is a very real risk that it will become permanent.

Neuropathy isn’t a diagnosis, it’s a symptom. A lot of illnesses (and meds) can cause neuropathy. Unfortunately – there are very few treatment options. I was prescribed gabapentin/Neurontin which is an anti-epileptic drug. It helps som people. Others get some help from pregabalin/Lyrica. But for a lot of sufferers, neuropathy cannot be treated and the pain is constant.

So yeah, I am terrified of CIPN (Chemotherapy-Induced Peripheral Neuropathy). Every day I have neuropathic pain, I wonder if this will be something that returns in a month or a year for eternal feet burning.

And did I mention it also attacks my finger tips? Try picking up pills with non-functioning finger tips. Great fun and an interesting challenge.

I got some fluffy slippers. I have no idea why they seem to make things worse. Maybe cos the sweat isn’t released out? But I love my pink fluffy socks! Between the neurontin and these marvellous babies, at least I can kinda walk.


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