Karin on phantom pain: “I’m now in less pain thanks to my artificial limb”
After an amputation, 80 % of people experience pain in a limb that they no longer have. There’s something mysterious about phantom pain (apart from the name), and there’s no real medical explanation. Besides, people experience it in myriad different ways.
The first thing Karin Pater-Noort (46) remembers feeling after the surgery in which her left arm was amputated is the sensation of her amputated arm resting on her stomach, which passed in and of itself an hour later. Karin opted for an arm amputation in 2018, having suffered from dystrophy (CRPS), a complex regional pain syndrome, in her left wrist, lower arm and hand since an accident in 2014. The pain was such a burden on her quality of life that she decided that an amputation would be the best course of action, and although her CRPS symptoms disappeared, they made way for phantom pain.
Phantom sensation
Karin first encountered phantom sensations when she started wearing prototypes of artificial limbs. Phantom sensations consist of feeling an amputated body part as if it were still there, but can also manifest themselves as heat, tingling or the feeling that the limb in question is longer or shorter than it ought to be. This is not necessarily painful. “When I’m wearing my prosthesis, I don’t suffer from phantom pain as much”, Karin tells us, “but the pain starts when I remove my arm. I get muscle spasms, stiches, cramp, hot or cold flushes, tingling and the feeling that electrical currents are running up and down my arm, and it usually gets worse at night.”
Medication
The right medication helps reduce the pain, but striking the right balance was quite the issue at first: "It's like cooking. Sometimes you try something new and quickly come to the conclusion that it doesn’t work at all. I’ve tried quite a lot in my time, and the side effects have been bizarre at times. At one point, the medication I was taking caused my body to retain so much moisture that I couldn’t fit into my shoes and clothes anymore. Another combination of drugs did the opposite and completely destroyed my appetite, which didn’t exactly make me easier to be around.”
Mirror therapy can help
Mirror Therapy is often mentioned as a solution to phantom pain and consists of doing several exercises in front of a mirror. When you move your healthy and your residual limb synchronously while looking in the mirror, you can’t see the amputated limb. These exercises help Karin at times: "Trying to consciously flex and relax sometimes helps me loosen up my muscles," Karin explains. Still, her current artificial limb is the best remedy for phantom pain. "It has to be attached properly, though. Otherwise, the pain will get worse because I have to put more effort into controlling my limb."