Phantom pain of the opera

A few of you might have noticed that lately I’ve been sharing a lot more than usual about phantom pain on my social media. And when I do, I usually get questions about it. It always make me happy to notice that so many of you care, and are eager to learn more about my recovery process. So I’ll take this opportunity to elaborate on phantom pain.

What is phantom pain? Let’s start with explaining what phantom sensations are.

It’s a perception that someone can experience relating to a limb that isn’t part of the body (anymore). Almost every amputee will experience phantom sensations at some point in their life. This means that they can feel the missing part like it’s still part of the body, but without any pain. And I literally mean like it’s still part of the body, because even now I can perfectly describe the position of my missing leg and foot, if it’s flexed or not, in what angle my knee is bent, etc. I'm even able to wiggle or curl my toes. So no wonder I didn’t have a clue when I regained consciousness after the accident. My dad and aunt literally had to tell me my leg was amputated as I could still feel everything as if it was still there. I can’t even begin to explain how bizarre that feels at first.

Phantom pain occurs when those sensations become annoying, from mild discomfort to extreme agony. Again it’s hard to describe these symptoms, since I realized it’s almost impossible to imagine them without actually losing a (part of a) limb. I’ve been told that I am one of the unlucky ones who suffer from extremely painful phantom pains (Yay..). So I’ll try to give a few descriptions as close to reality as possible.

Imagine having one of your legs bent under you, so you’re sitting on your foot. Your foot feels unnaturally folded inwards. No biggie, right? Unless you feel that for over a month, non stop. Not so comfortable anymore, but no reason to be a drama queen either.

Now imagine a robot grabbing your ankle tightly with metal claws, while something else, a goblin to make it a bit more fun, is working your toes with sandpaper. Back and forth he goes, scraping the skin of your beloved toes. Painful enough for you? Or can you handle an extra demon swinging a hammer at your ankle every 10 seconds, so that you feel it break again and again? I suspect everyone turning into a screaming drama queen by now. Remember, I feel all that as if it's really happening.

I think I made my point clear: phantom pains are no joke. It’s a whole new spectrum of pain I wish I had never discovered. But here I am, facing them almost 24/7. That brings us to the next question: what can be done about them?

I started off with mirror therapy, that seemed to have a decent effect in the beginning. I basically put a mirror between my legs, facing my remaining leg, so I could see it in the mirror. Then I would move my leg in all possible directions, while focusing very hard on the leg in the mirror. That way you try to convince your brain that you still have 2 legs, and it doesn’t have to constantly send (painful) signals to that part of the body.

Other treatments include heavy pain medication, which unfortunately has side effects such as weight gain (hello, extra 15 kg), memory loss (never felt so dumb in my entire life), drowsiness, etc. Because of these side effects I’m slowly trying to reduce the dosage over 10 weeks time. Of course that means temporarily more pain. (Hence me mentioning it more often lately.)

They also tried an infiltration method, where they put a needle in my back to reach a nerve in order to paralyze it in the area where I feel pain. When a doctor says you’ll feel a “little” sting, you’re NOT expecting to feel like you’re going to drop dead instantly from the excruciating pain, 3 times in a row. Fun fact: this method had zero effect.

Since the hospital is running out of methods to help me, I started looking for other ways to ease the pain, or at least help me handle it better. EMDR, relaxation therapy, mindfulness,.. are a few of them. Next Saturday I hope to be seen by someone who practices the Daoist medicine. Obviously I’m willing to try anything at this point.

I can hear you wonder if I haven’t tried to get completely wasted, you unmannered animals!!

(Of course I tried, but without success.)

That brings us to the end of this week’s story. If you have some unanswered questions, don’t hesitate to put them in the comments at the bottom of this page. I’ll be happy to answer all of them. If you have trouble understanding everything, try Google translate. Works fine for me.

To those who persevered and reached the end: a thousand times thank you for taking interest in my recovery and all that comes with it. I know I’m not special, but I do hope to bring some awareness around limb loss, amputees and the trauma most of us have endured.

With love,

One legged blondie