Neuropathy is a Real Pain (Part 1)

Let’s say that somebody asks, “How are you today?”

And let’s say that you’re being honest and you reply, “My feet are KILLING ME.”

Unless you’re in a peripheral neuropathy support group or unless you’re talking to a fellow sufferer, nobody really wants to hear about your feet. Or about my feet.

Neuropathy is a hard sensation to get around

But sometimes neuropathy is such an all-consuming sensation that it is hard to get around. It can feel like your feet are plugged into an electric current. Sometimes it’s little pinpricks, sometimes a low-level buzz, sometimes numbness. Sometimes it’s like walking on sand or walking on eggshells. Non-sufferers find it hard to understand that your feet can be numb and painful at the same time.

I used to be a big runner. I am trying to keep up with it. But it’s hard to do when you’re cruising along and it’s not too bad and then all of a sudden it seems like you’re wearing lead boots. However, when I run around and play tennis, it sometimes bothers me LESS because I’m focusing on the ball while at the same time improving my circulation.

A mind of it's own

It seems to have a mind of its own, coming and going. I thought maybe damp weather brought it out but I’m writing this on a bright sunny day when I walked my dog and my feet hurt and I tried to distract myself with looking around at the still-blooming trees and the blue sky.

In a Facebook group called Our Neuropathy Friends, one person wrote,
"When the Barometric pressure falls, it literally feels like something is crushing my bones! Just ALMOST to the point of being unbearable!!!!" Another said, “Living with chronic pain is like trying to get comfortable on a cactus sofa,” and still another posted, “Totally unpredictable: has lasted 2-3 days or few hours. Have tried to correlate it with diet, weather, movement: cannot predict when it will come or go. Exasperating.”

It started after my third transplant

Mine started 10 years ago when, for my third allogenic transplant, I got induction chemotherapy with a high-dose cytarabine-based regimen, followed by conditioning with fludarabine and melphalan. Of course, I have no idea which one caused it.

More than 20 million people are estimated to have neuropathy. Diabetes is the leading cause, but cancer patients have their share. The National Institute of Neurological Disorders and Stroke states that chemotherapy is estimated to cause neuropathy in 30 to 40 percent of patients.¹

“Chemotherapy-induced peripheral neuropathy may continue long after stopping chemotherapy. Radiation therapy also can cause nerve damage, sometimes starting months or years late,” the NINDS states.

The mechanism for the torture

“Peripheral neuropathy refers to the many conditions that involve damage to the peripheral nervous system, the vast communication network that sends signals between the central nervous system (the brain and spinal cord) and all other parts of the body. The peripheral nerves are like the cables that connect the different parts of a computer or connect the Internet. When they malfunction, complex functions can grind to a halt."¹

Nerve signaling in neuropathy is disrupted in three ways:

• Loss of signals normally sent (like a broken wire)
• Inappropriate signaling when there shouldn’t be any (like static on a telephone line)
• Errors that distort the messages being sent (like a wavy television picture)”¹

Now that you've heard a little bit about my experience with neuropathy and how neuropathy occurs, let's talk about ways to manage this very real pain.

Read Part 2 of Ronni's article, Many Options, and Much Confusion, In Neuropathy Treatment.