Ask a Peer: Phantom Limb Pain

After you have had a limb amputated, it’s not uncommon to feel like it’s still there. Sometimes you not only feel it, but that missing limb can cause you some serious pain. This is called phantom limb pain, and it’s a problem for many amputees.

So how does it work? Even though the limb is no longer there, the nerve endings at the site of the amputation continue to send pain signals to the brain. These signals, as well as your brain’s memory of pain, make your brain “think” the limb is still there. 

Phantom limb pain is difficult to treat, and anyone experiencing it should speak with their physician. We asked our AMP-Peers about their experiences with phantom limb pain, and how they addressed it. Here’s what they had to say.

“I have been an above knee amputee for 43 years and sometimes I have unbearable phantom pain.  If they are quick shooting pains I just ride them out by standing or walking, and they’re over in a few minutes. However, I can sometimes get phantom pains that come in rapid succession lasting for hours, usually when my body is at rest.  These are very intense lightning bolt type shooting pain that have me gritting my teeth and holding on to the bed post.  On a good day, I can rub the incision on my residual limb and the pain subsides, but on a bad day, I have to ride it out losing sleep until it stops.”     

“I get phantom pains rarely. Massage, if I can do it at that moment, helps. If I can’t access the leg directly, relaxation; concentrated relaxation is second best.”

“I am happy to say that I rarely have phantom pain any longer.  I will get the occasional shooting pain but it is quickly gone.  Immediately following my amputation, the phantom pain was unbearable.  It was worst at night making it difficult to sleep.  The change for me was when I received my first prosthesis.  I cannot explain what changed. Possibly it was in my mind, but once I was using my prosthesis the phantom pain subsided.” 

“I’ve found out the tighter my socket or liner the more phantom pain I get.” 

“I contribute my phantom pain to the change of temperatures around my stumps.  When the ends of my stumps get cold, I feel pain.  I also feel sharper pains in my ankles, top of my feet or cramping of my toes. If my stumps are bare, I can reach out and hold them or rub them until they’re warmer and the pain subsides.  If I’m wearing my legs, once the pain grabs my attention, I’ve learned try to relax as quickly as possible and the pain eases most of the time.”

Again, these are just a few recommendations from our AMP-Peers — always consult with your physician first! To learn more about the AMP-Peers, click here.

We want to hear from you!  Have you ever experienced phantom pain? How have you dealt with it?

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