Neuropathy pain really hurts!

Oh, the joys of neuropathy! This is one of the potential side effects of some cancer treatments, but what is it like in reality?

Alt text: A white mug with an image of Robert Smith of The Cure printed on it. The handle is being held by my white / translucent hand with very short & broken fingernails. The mug rests on a round wooden coaster, on a wooden desk, behind an orange notebook with a gold butterfly design.

A couple of months ago, I promised that I’d write a blog on Neuropathy & Neuropathic pain. I’ve finally got round to putting my thoughts down!

However, before I get into the details, I wanted to let you know that I’ve updated my Art page. You can either click on this link to see it – https://themusingsofspu.com/art or go to the Menu in blue and select ‘Art.’ The main focus of my artwork is to depict different aspects of being disabled & living with a cancer diagnosis.

Now back to this month’s theme. In case you don’t know what Neuropathy is, here’s the NHS’s explanation – https://www.nhs.uk/conditions/peripheral-neuropathy

The unfortunate thing about Neuropathy for me is that I already had it before I started my cancer treatment! Neuropathy affects my left foot & it’s really common with my impairment. It’s paralysed, dropped & I struggle to fully feel changes in temperature or pain. Sometimes, even the lightest touch causes sharp pain – it makes no sense at all. Other times I feel pain in a different place to where the pain is actually coming from.

Throughout my life, I’ve had to take very good care of my foot – definitely not to have any open wounds. Every month I have Podiatry treatment. The Podiatrists keep a careful eye on anything untoward & they catch any issues early before they develop into something more sinister. I also have Raynaurds, which affects blood circulation to fingers & toes. I got diagnosed with it at 23 & then I got put on some medication, Nifedipine. This increases blood flow to my feet (this medication is also used to treat high blood pressure). It means that my foot infections are rare now & I don’t have to take loads of repeat antibiotics.

Many aspects of my impairment have become worse, or the aging process has suddenly accelerated because of the side effects of my cancer treatment. I have developed Neuropathy in my right foot, along with Plantar Fasciitis in both feet. I first noticed a change when it felt like the fourth toe on my right foot was broken or had been bent right back. I got my toe checked out for breaks – there weren’t any. The strangest thing is that there’s no visible change to my toe except that it’s looking more swollen & it’s gone numb.

Neuropathy & Plantar Fasciitis is difficult to manage because I rely on my right foot to have really great balance so I can do all my transfer from wheelchair to bed, etc. I drive with my right foot. The orthopedic team supplied corrective insoles in my footwear to help. Both my legs really spasm when it gets to the evening. It’s so annoying when I’m trying to watch tv after dinner!

I can’t remember if I’ve included these images in a previous blog, but I created three small paintings using watercolours & inks to depict how I experience Neuropathic sensations in my feet.

Alt text: A painting in watercolor & ink of a pair of feet in socks. Both ankles in jogging bottoms are in the picture. Black needles are stuck in the bottom of each foot. Shockwaves painted in jagged red lines that radiate from the heel to the toes on each foot.

Alt text: The same pair of feet with both ankles showing in this painting in watercolurs & inks. There are no black needles now, but the jagged red lines still radiate from the heel to the toes on each foot.

Alt text: The same pair of feet but the lower legs are showing in this painting in watercolours & inks. The feet are positioned side by side on the floor & blue lines, painted as waves, radiate from the toes across the top of each foot.

I’ve also developed Neuropathy in my hands. This is a total nightmare because I need my hands to work well. I’m a manual wheelchair user. I drop things all the time & I’ve had a few near-misses with flying cups of hot tea! The Raynuards causes numbness, coldness & tingling but that’s usually in winter. Because of the cancer treatment, now those symptoms are all year round. My hands really cramp up overnight so I have to spend about 5 – 10 minutes flexing my fingers before I get out of bed.

In recent months, my bottom lip has felt really swollen & a bit number. Yep, you’ve guessed it – Neuropathy!
There are other symptoms too which I’ve found so strange – stomach issues such as feeling sick, vomiting, bloating & going through periods of dizziness when I stand up.

So how do I ease the symptoms? With great difficulty is the honest & brief answer! Due to underlying issues, I’m limited in what pain relief I can take & the exercise that I can do, but I take Vitamin B12 tablets, a small amount of amitriptyline & dihydrocodeine. I use elastic sleeves, supports, & wraps on my ankles & feet. I have reflexology when I can alongside regular sessions of swimming & yoga. I practice particular exercises associated with relieving Plantar Fascitiis pain, like rolling a ball under the arch of each foot to stretch out the Plantar Fascia ligament (it’s strangely soothing!)

Naturally I’m over-thinking about how bad this Neuropathy could get & what might happen in the future. But my golden rule is to take each day as it comes. All I have to do is focus on putting one wheel in front of the other.

Looking ahead to October’s blog, it’s going to focus on something rather special. I’ve contributed some thoughts & lived experience to an important book on resource book about Breast Cancer. I can’t say much more than that, other than saying that I’m very, very excited about its potential to improve the general wellbeing & health of disabled people.

I hope that’s got you thinking…!