Living with polyneuropathy in my feet

More than 2 years ago I was diagnosed with polyneuropathy of the feet.

I started experiencing all kinds of sensations in my feet. From excruciating pain like being stabbed in my feet, to excruciating burning feelings, to experiencing dead feelings in my feet, and also as if strong elastic bands were around my feet and someone was pulling them continually tighter.

The cause?

Back in 2013 I experienced my first DVT as a result of an operation on my left ankle on 1 January 2013. Then, in 2016 I had my second DVT. The difference this time was that there was no detectable cause for it. I was in hospital for 16 days while doctors tried all kinds of tests, and internal prods, in order to find the cause for the second DVT. They also battled to get my blood INR under control. Eventually I was informed that I would have to take Warfarin for the rest of my life to ensure that my blood doesn’t clot too fast. I also wore full length medical stockings. About a year later my doctor told me that I no longer needed to wear the stockings. This is where the problems started.

At first I thought the issues with my feet were due to my back problems. I eventually saw an orthopaedic surgeon who sent me to a neurologist. After the tests that the neurologist did, it was confirmed that I had polyneuropathy of the feet, which in this case had nothing to do with my back problems.

With this information the orthopaedic surgeon had more to work with in order to come up with a reason for the problems in my feet. When she found out that I had two DVTs, one in each leg, the light went on.

The conclusion was that not wearing the medical stockings caused the blood in my legs to pool in my feet, and essentially it “drowned” the nerves in my feet. Since then, I have been wearing knee-high medical stockings to help my legs circulate the blood back up my leg.

Burnt bum: NOT mine!

Some of the problems that I experience are stabbing pains in my feet while driving. Luckily, this doesn’t happen often, since I do not drive long distances. I could be in bed, and the bed sheet on my feet could feel like something is burning the skin off my feet. I have learnt not to use my feet as thermometers to check the temperature of the bath water. I have burnt my behind with hot bath water, because I tested the water temperature with my feet, which just happened to experience a deadness at the time.

This past week, we were on the MSC Orchestra for a cruise from Durban to Pomene on the Mozambican coast.

I cannot wear flip-flops, because they cause me feet severe pain. So, I decided to wear aqua boots at Pomene. It is great, because they can be worn in the water. No need to take them off at any time during the day. I cannot dare going bare feet since I could step onto something that could damage my feet without knowing it. Also, the beach sand there get severely hot, which could harm my feet.

We went through the whole day having lots of fun. Early I went snorkeling, and after that we did an excursion to the hotel ruins, where we walked a lot.

Skin removed from my toe by wearing an aqua boot.

When we got back to the ship later that afternoon, I took my aqua boots off and realised that the big toe of my right foot lost some skin, caused by the friction on it. I had felt absolutely nothing! The photo of my toe was taken 3 days after the event.

It is very important for me to care of my feet very carefully. Previously, I also had a short thorn in the ball of my right foot, and didn’t know about it.

It isn’t always easy to live like this, but I also know that there are people out there who have it way worse than I do!

In all of this, God has been good to me. He has given me a wonderful family who all understand my difficulties.

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