I might start by describing phantom limb pain in a way that those who don't have it can fully understand it. I always describe the pain as sounds, stereo sound. In one channel, you have pain and sensation you recognise or remember. This is water running down your arm, or bugs crawling over your arm. It's the “sounds” or pain you can identify; you’ve felt it before. In the other channel, the sounds are violent, erratic and a combination of constant pain and bursts of pain. If this pain were sound, I would describe the base pain as a buzzing fluorescent light; it's neither quiet nor loud, but it's constant, and it's the noise that wears you out the most. Mixed into this are bursts of pain; the severity, duration and frequency of this pain vary, but it's LOUD. This louder pain is extreme; the pain “level” would be similar to someone striking your hand with a hammer, full force. However, the difference is that the pain is “ON/OFF”, its like a square sine wave in how the pain hits. There's rarely a slow build-up of this increased pain, and there is no slow fall-off either. This pain would sound like a stick welder striking an arc, or a drop saw cutting aluminium. This is the pain that gets your attention, and it's what I am referring to when I talk about my phantom pain. The other, familiar, pain and sensations are easy to shake off.
Controlling the pain.
Can I aggravate or soothe my phantom pain? Not really. I’m not taking any medication for my phantom pain. I did a few rounds with all manner of medications, and I found they all rob Peter to pay Paul. You might knock the edge off the pain, but you can't think straight or remember how you got from one place to another. I do know, without question, flu shots make my phantom pain go through the roof - I have to take three days off work and isolate myself, my “post flu shot” phantom pain is that bad. And that's why I haven't had a flu shot in two decades.
I’ve fallen off bicycles and motorcycles, fallen off my work bench in the shed and down a set of stairs. None of that made my phantom pain worse. Though I’m pretty sure cold weather makes the baseline hum louder, so I keep my short arm covered and warm. There's no magic bullet for phantom limb pain; you just have to learn to live with it. And, like it or not, everyone close to you has to live with it as well, in one way or another.
How do I manage phantom pain without medication? Probably poorly, but I have a technique that works; it just has drawbacks. I know that my method for managing my pain has cost me relationships, of all kinds, and you have to find the right workplace to use it to get you through the workday. It's taken me 20 years to get this technique right, and I’m fortunate enough to be in a line of work where it fits. I simply engage my brain in tasks that require it to focus and work - solve problems, think deeply and process information, focus on tasks that require great detail and error control. You just lock in. The pain fades.
The drawbacks start with complete and utter mental exhaustion. This has knock-on effects, like mood; mostly, patience diminishes, and you tend to isolate as stepping away from the comfort of concentration fuels the pain. Distractions, especially useless or pointless ones, tend to fill your performance reviews with lines like “unapproachable” and “abrasive”. Most employers and coworkers, once I explain phantom pain and how I’m managing it, understand and make provision for it and are generally forgiving. A distraction, when you’ve just spent 30 minutes getting your brain to quiet the pain, and you’re superfocused on your work, brings the pain back on at full tilt immediately. So, the pointless distractions are frustrating.
You find an employer who understands, it's good - you go to work, grind out work non-stop for the day, the boss is happy, and you go home. The people you're close to have to put up with me for much longer, and I think that's why, for a very long time, I would bring work home - subcontract work, or just lock on to a personal project. My mental resources, outside of “work”, were limited, and I used that limited resource to be a Dad for my kids. They’re all older now, the boys would have seen me at my worst, in the very early days of phantom pain. My daughter, especially after her mother left, got the workaholic Dad. I’m very fortunate and grateful to have three great kids who understand and are forgiving when they need to be.
Outside of work and family, my mates get it once I explain why I suddenly doubled over in pain or grind my teeth in pain. Phantom pain has never prevented me from living; it's just small, short bursts of pain punctuating your day. I couldn't blame phantom pain for interfering with my deeper relationships. I’ve never met a woman who didn't show care, or sympathy, or a drive to help with phantom pain. However, as I mentioned, my mental resources on a daily basis are limited, or my time is limited by taking on work or projects to act as a painkiller. And that limited resource has to be dedicated to being a Dad, because that is my current priority.
On/off the bike
Does using my short arm, either on or off the bike, aggravate the pain? Not entirely, no. I’d say I get a sore shoulder on that side of my body on long rides (200 km+). Most of the roads in Queensland are rough, so bumps and hard hits through the prosthetic haven't ever registered or increased the phantom pain. The same with weather, hot, cold, wet or dry, the levels of phantom pain I’m experiencing at the time aren't affected. Cold weather, maybe, but I can push through short rides and just wrap the socket of the prosthetic arm to keep it warm for as long as I can.
Off the bike, working in the shed, for example, I’ll use my short arm as best and as often as I can, and if I injure myself there, it's not immediately painful. In fact, I typically won't be aware of an injured short arm, but I “imagine” pain when I find the injury, if that makes sense.
What is MY phantom limb doing?
I’ve been asked if I can feel my hand/fingers/arm off my missing arm, and what the arm is doing. Is the hand clenched? Is the elbow bent? What's going on there? I have to be careful with this, as “thinking” about my missing arm makes the pain a little louder. I have a scattered patchwork awareness of my “arm,” but a pretty clear and cohesive awareness of my hand and fingers. My fingers/thumb and the outside palm of my hand are the parts that light up when the pain spikes. I can “feel” my hand, and it's like it's encased in concrete; trying to make a fist is frustrating (and a little nauseating), but not painful.
If I do “mirror box” therapy now, I can feel parts/patches of my arm disappear the more I do it; mirror box therapy doesn't seem to affect that loud pain. I do not do enough mirror box therapy to be an expert on it. Initially, months after my accident, mirror box therapy would send my phantom limb pain through the roof - like someone was skinning my entire arm. Which is why I avoided it for 26 years.
Does it get better?
Maybe. Maybe phantom pain fades, maybe you just build a tolerance. I do know that, in the really early days, it's blinding pain that probably actually drives you a bit insane. It's a very real thing, the pain and the reality that it's yours now for potentially the rest of your life. Medication helps, but it won't stop it completely, and maybe that's enough for you to build enough momentum to build a tolerance where you can rely less on medication. I do know that I’m less affected by the louder pains; they still hit hard, and I definitely make a noise when they hit, but I am much better at handling those hits. The pain no longer erases the previous two minutes of a conversation, or calls for a time out so I can walk it off, sort of thing. So, yeah, it can get better - in time and by building a tolerance and with the right pain management.
