Updated: Jan 27
There are 3 areas of pain:
1) Intrinsic Pain - The pain following the amputation surgery
2) Phantom Pain - Pain that you feel in the portion of your limb that has been removed
3) Extrinsic Pain - Pain when using a prosthesis or pain that you experience by bumping your limb or falling, etc.
Today I'm touching briefly on phantom pain.
First, I want to emphasize this fact:
I believe that no amputee should experience pain as a natural consequence of having an amputation.If the surgery is done as best it can, and if the prosthesis is fit as best it can, you should experience no pain.
I want to differentiate phantom pain from phantom sensation.
Phantom sensation is simply that you feel a part of your limb that is no longer there. It doesn't hurt, you're just aware of it. That is a healthy thing to have, because it helps you feel the prosthetic foot where it's at in space. It's called proprioception, and you want to have that sensation so you don't have to look down to see that your foot is on a curve, or on a stone; you can feel it, it gives you feedback.
Phantom sensation is good.
We want to talk about phantom pain, which is not so good.
People experience phantom pain differently. Some feel like the foot is cramped; the toes are bent - either underneath or backward; part of the foot feels like it is in a vice or pliers; or there's a constricting ring like a wire being wrapped around your ankle and tightened and tightened. There is no rhyme or reason for this, but those are real pain feelings. We have to determine whether or not that is a function inside your limb or whether the prosthesis is causing that.
Immediately after surgery, within the first 10-12 months you could experience phantom pain, and there are a number of medications that some physicians will prescribe for you; there are also other treatments that you can do at home, by yourself, not using drugs. I'll briefly outline 3 of them:
1) One of them that has worked very well is for you to sit in a chair with both feet on the floor. I know your'e thinking "I don't have both feet," but sit and imagine - even if you have to close your eyes - that both feet are flat on the floor. Then think about pulling your toes up and letting them down... lifting your heels up and letting them down... and repeating that several times. That causes a neurochemical function in a single plane; what we believe is happening with phantom pain is there is a miscommunication - you have information coming into the brain saying your limb is there and experiencing pain, but the brain is saying it's not there, so you get this strange sort of phenomenon. If you can get that power going in one direction we've found that that will help subside the pain.
2) The other thing you can do is use a mirror. Put the mirror in front of you & perpendicular to you, so that one of your limbs is reflected - for example, sit on the floor with your legs/limbs out and a full length mirror in between your legs - and move the reflected limb. There is a mechanism in the brain that will automatically mirror that over to your other limb.
[Image sources: TBI Rehabilitation, Neuroscientifically Challenged]
3) Meditation & breathing. Sitting in a dark space, sitting comfortably; breathing in through your nose, out through your mouth. Thinking about just the breathing, the act of breathing. Your mind is going to want to wander - thinking about the pain, or what you ate for lunch, or what you should be doing - but see if you can get your brain quieted down to just the breathing. With practice, it can become an incredibly useful tool to quiet the mind.
There are several mindfulness & meditation apps and resources online - for example the Calm app, the Headspace app, the Shine app, YouTube videos, and Spotify playlists.
My experience and our experience here has been that people do not experience pain when they have their prosthesis on and when they are carrying on their daily activities, whatever they are; whether it's just walking, going to the gym, or performing some sports or recreational activity.
In fact there are a number of people who run long runs like marathons & 50-mile runs without skin sores, without pain, and without skin breakdown.
The process of fitting is very complex, there are many procedures; and we go through all of these procedures so that the prosthesis and the fitting will last as long as possible.
We have patients that have been wearing the same prosthesis for 15-20 years. That's well past the average of 3-5 years.
It's important that, as an amputee, you have the patience to go through each of these steps, so you don't have to visit your prosthetist any more than necessary.