What is Neuropathy and What Exactly is Happening to Me?

I had no idea what to call my chronic back pain and nerve damage until recently. When I learned what neuropathy is and the other complications it causes, everything clicked.

To start though, let’s play a game. I’m going to take you through my own discovery process. You won’t feel the pain, but you’ll (hopefully) understand my perspective even more.

Put yourself into “character.” You’re now me at age 23. It’s August 2014 and just over two years ago, you had an emergency spinal fusion after a 6 month battle with a fractured spine. Before that, you went through years of trying to recover from the initial injury (a ruptured disk) when you were 18.

The Diagnosis

You go to visit your surgeon because you’re concerned with progress of your recovery. It hasn’t just stopped moving forward, you are actually regressing. The pain is getting worse.

Your doctor seems too nervous. He’s wringing is hands, like he needs to get every drop of water out of an imaginary washcloth. He finally makes eye contact and says, “Now, what I’m about to say is going to be very hard. And I don’t want you to end up like Robin Williams, okay? Just never, ever think that’s a way out.”

At this point, you’re freaking out. His deep blue eyes care too hard from underneath the grey bushes he has for eyebrows. He has genuine concern you will commit suicide at some point in your life. What the f*** could make a doctor say that to a patient other than taking the death of an actor really hard?

“You have damage inside of your nerves and it’s likely only going to get worse over time…”

The rest of his monologue is lost to the buzzing in your ears. You hear the term “paralysis” somewhere in there. It makes you shift uncomfortably in your chair, which in turn makes you wince and only makes the pain worse. He says “neuropathy,” at some point, but you don’t hear it. You can only hear the echo of your own life coming to an abrupt halt.

What you take away from the conversation is, “Live hard, now. Because later you won’t be able to do anything.”

The Transition

Telling others of this diagnosis is still the hardest part. It’s often called failed back surgery, but I don’t think that’s a fair term. My back was beyond repair before the surgeon ever touched me.

So, when it came time to tell anyone that there was no help for me… 90% of the time, I would hear:

You’re too young for that.

Or something along the lines of complete denial. I still do get these responses – to this day. Do you know how frustrating it is to try to accept your own doomed diagnosis? To have others constantly literally not believe you is even harder.

My inability to explain what was happening made it even worse. I had no web page to point them to and say, “Look! Read this. This is what is wrong with me. Please read it and stop being such a jerk.”

The Life

Fast forward to age 28. You’ve been struggling with this now for years. You lived hard, traveled in an RV, and made sure you went everywhere you could possibly go while your mobility wasn’t limited.

You realized a few years ago that the end of your ability to properly take care of yourself was coming faster than you thought it would. New new symptoms pop up often. They’re confusing and scary. And you don’t have the luxury of health insurance anymore. So, there is no medical attention to the matter either.

One day, someone with what has to be a perfect IQ score says to you, “Oh, so you have neuropathy?”

You Google neuropathy and behold! There’s the answer to everything you’ve been going through. This might be the one case where Googling your medical issue works in someone’s favor.

What is Neuropathy?

Neuropathy is different from normal pain. It’s similar to neuritis, but neuritis is not chronic. Neuropathy is chronic, meaning it never stops.

Neuropathic pain is distinct from other types of pain. If a person breaks a bone, pain signals are carried via nerves from the site of the trauma to the brain. With neuropathic pain, however, pain signals originate in the nerves themselves.

Spine-Health

For those of you who forgot high school biology, nerves are what make up our brains. So, when pain originates from your nerves – even if it’s from the peripheral (non-brain) nerves – it’s f***ing weird. That is my 2-cents on that.

What it means for me is that I am always on the pain scale. There isn’t a moment of my life since 2009 I haven’t had any pain in my back or legs. It also means that my pain isn’t localized in my back. I actually feel more pain in my legs than anywhere else.

It’s a little like phantom limb syndrome, but my limbs are there and the phantom is the cause of the pain. I don’t think anyone has ever shredded my legs in a paper shredder, but I’ve definitely felt that sensation.

For those of you thinking, “Oh, I have sciatica, I know what you mean.” No. You do not. Sorry, but that is neuritis, not neuropathy. And my case is worse than any doctor would recommend, which is probably why my doctor was so concerned for my future mental health.

My Symptoms of Neuropathy

The most general symptom of neuropathy is pain of various types. They include, but are certainly not limited to:

• Severe, sharp, electric shock-like, shooting, lightning-like, or stabbing
• Deep, burning, or cold
• Numbness, tingling, or weakness
• Traveling pains along the nerve path

Uncommon symptoms of neuropthy (all of which I have) are:

• Hypersensitivity to light touch: It might be barely noticeable to other people, but the lightest touch might trigger a reaction of some sort. This is called allodynia.
• Extreme sensitivity to minor irritations: Something that might be only slightly painful to others (like tapping my leg) might actually feel more like stabbing me in the leg. This sensitivity also includes sound. Somehow, abrasive noises or too much sound actually makes my pain worse. This is called hyperalgesia.
• An unusually low sensation to temperature: This one only happens to me occasionally. It is called hypoesthesia.
• Pain like an electric-shock or pins-and-needles: Getting feeling or pains when there is no contact. This is my 24/7 battle. It’s known as paresthesia.

Sounds like fun right?! Let’s all go out and get neuropathy! No, please don’t. Don’t join the 7-10% of people who suffer from it. Trust me, it is not a fun one.

The Resulting Issues

These symptoms cause so many problems, it’s unreal. For example – I peed myself in public at least twice now. Yep. I just wrote that publicly on the internet. But it’s important. It gives you a very, very real example of a common issue I face that no one thinks about.

Now, knowing my symptoms, put yourself back into 28 year-old me mindset. You really, really have to pee. But you’re stuck on a bus and the driver won’t stop, even for an emergency – apparently.

The sensation of the pressure of your full bladder starts to morph. First, it just feels too intense. Then you start to feel like it’s the most painful thing on the planet. If you don’t get that pee out of you right now, you might die.

Eventually, your nerves just give up. They say no to the pain and force you to just let go. So there you are, pee-soaked in public. And, everyone around you thinks it’s because you’re drunk. You had one beer 2 hours ago. And, you peed twice before you left.

But who can blame them? Who pees themselves in public aside from children, drunks, and old people? Of those three, I only looked like I could be one. When really, I fit the last category more accurately.

The Future

Now that everyone knows the most embarrassing thing I’ve been through recently…. Take all of this into consideration when you judge me or my life, please.

Living with this on a daily basis is not easy and I can’t live alone much longer. I’ve fallen already twice when I wasn’t using my cane because I took a step and a pain shot so severely up my spine that it caused me to collapse.

I’m 28 years old and if you read that last paragraph without knowing me, you’d think I’m at least above 60. But, despite how bleak all of this sounds when written down, I’ve accepted it. Now, I just need others to accept it too.

Featured Image by Yuris Alhumaydy on Unsplash