Jane Mapfungautsi – The reality of peripheral neuropathy

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Jane Mapfungautsi (54) lives in Kanye, Botswana. She is a single mother of three, Rungano, Rutendo and Ashley.

I have had Type 1 diabetes for 44 years; it has been a long journey with its many ups and downs; hypo attacks; hyperglycaemia; hospitalisation; doctors’ visits; diet adjustments; insulin shots and so the list is endless.

I always assumed that my glucose levels were well managed, but it was the contrary. Early last year, I was watching television and all of a sudden, I got like an electric shock in my right arm and chest. The pain was so sharp and intense. I thought I was having a heart-attack.

Debilitating pain in arm

The next day, I woke up with a swollen arm. I couldn’t lift my arm; it was extremely painful and felt heavy, and every single movement would make me belch.

After consultation with my local GP, a number of blood tests were run which showed that I had a bacterial infection in my ulcers. They also said I had a burst vein. I was prescribed a range of antibiotics and painkillers and started physiotherapy to help me with my arm. The ultrasound and any movement would make me scream in pain and I was belching all the time.

For the next four months, I was still in pain. I couldn’t lie down to sleep, especially on my right side. Any movement of my right arm (elbow, shoulder, wrist, fingers) would make me belch and that isn’t a pleasant sound at all.

I couldn’t write on the board (I’m a teacher), stir while cooking, or stretch my arm to close the car door. Using the bathroom was a task and a half.

I would lie down to sleep for a few minutes then a piercing pain from my shoulder down to the fingertips would start so I would fall asleep whilst sitting, surrounded by pillows. Most nights I would be crying in pain. I would have numerous hypo attacks and my blood pressure was often high because of the pain. Plus, I lost a lot of weight.

Re-diagnosed

I had prescription after prescription of heavy painkillers. The issue of a burst vein was ruled out after I had a Doppler scan done. An imaging test, called a barium swallow test, showed what I already knew that I had an irritable bowel system.

I lamented my issue to a friend of mine who is a doctor studying in the U.K. After consulting her colleagues, she advised that it could be peripheral neuropathy, and now the phrenic nerve which is connected to the upper diaphragm was making me belch whenever disturbed.

At the same time, I was referred to another specialist physician and I had MRI of the upper abdomen and spine. It reflected nothing much. However, this specialist also said it was peripheral neuropathy.

He explained how peripheral neuropathy damaged the nerves (in my right arm) caused by long-term poor management of blood glucose levels.

Pain dates back to 22 years ago

He reviewed my diabetes history. I had always had this pain in my right hand since 2002; back then I was prescribed carbamazepine (an anti-convulsant) to be taken once every day, together with paracetamol when the pain was intense. In 2018, it was changed to gabapentin, taken together with paracetamol and vitamin B Complex.

I also realised that in winter, sleeping with my gloves on and holding a hot-water bottle helped. This is what I still do, especially when it’s cold.

So last year, following my so-called heart attack, the specialist clearly explained to me the extent of the damage to the nerves in my right arm. I learnt that other diabetic patients suffer pain in their legs.

Pain management

As nerves can’t be repaired, all he could do was help me manage the pain. Instead of prescribing the next line of nerve-blockers, he increased my daily dosage of gabapentin, to be taken together with a painkiller, celecoxib (an anti-inflammatory), paracetamol and amitriptyline to help me sleep.

Because some of these meds are addictive and can harm organs, I have managed with the help of my physician and pharmacist to cut out the pain killer and take amitriptyline only when necessary.

Every three months, my liver and kidney function are checked, together with the other routine blood tests.

It’s encouraged to exercise the arm (watering garden with a bucket; dipping the hand in warm water with a stress ball; cooking; sweeping and mopping floors).

These days, I feel pain in cold weather or when I have overworked the arm which makes the hand swell up. I also have to rest enough, eat well and watch my blood glucose levels. In winter, I need to keep extra warm.

Grateful to healthcare team

The greatest lesson I have learnt is that poorly-managed glucose levels can damage eyes, kidneys, nerves and even cause death. We as people with diabetes need to be very careful.

My deepest gratitude goes to the team of doctors and nurses who always go out of their way to help me stay on my feet. My children are my greatest support team.

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