Managing Phantom Limb Pain

Publish Date: 10/12/2015

About 80 percent of amputees experience “phantom limb pain,” which  is when an amputee experiences real pain sensations that seem to be located in the missing limb. It may even feel as though the limb is being forced in to a cramped or uncomfortable position, without recourse or relief.  As time goes by, the pain may diminish in severity and frequency, but some amputees experience it for the remainder of their lives.

 Phantom limb pain is real

There was a time when doctors presumed phantom limb pain was a psychological problem related to post-amputation emotional stress. Although the cause is still not clear, many experts believe that it is “a response to mixed signals from the brain.” It also may be caused by damage to nerve endings. Amputees often describe the pain as stabbing, throbbing, burning or crushing. The pain almost always has its onset in the first few days after the amputation.

Bilateral Above Knee Amputee Leaning Against a TreePhantom pain is not the same as phantom sensations.
Phantom sensations are when amputees feel like the missing limb is still there, feeling it’s too hot or too cold, or that there is an itch that needs to be scratched. Many amputees are able to mentally move the toes of the phantom foot to help some of the sensations to dissipate. Sensations can be irritating, but they are not painful and generally disappear over time .

You may also experience actual pain in your residual limb.  Residual limb pain may be caused by many factors including overuse or socket fitting issues due to residual limb changes.  If you experience pain in your residual limb contact your prosthetist or physician.

Some amputees that have not suffered from any phantom pain issues for years, can suddenly experience a jolt or electric shock feeling in the limb without any warning. Many amputees have related this to a sudden change in the weather or the onset of a cold or flu. Some individuals have felt that their diet or a particular food or drink can aggravate phantom pain.

Phantom limb pain may be severe enough to interfere with rehabilitation and often needs medical intervention and pain management. If you are suffering from this type of pain, you can take some solace in knowing there are potential remedies. Speak with your doctor, prosthetist, physical therapist, occupational therapist, and other amputees to decide what treatment options might be helpful for you.

Managing phantom limb pain with medication

Currently, there is no medication developed specifically for phantom limb pain, but there are drugs designed for other purposes that have been found to relieve it.  Many amputees may utilize medication in the early stages of amputation but can work with their doctor to develop a step down program to eventually eliminate use of these medications.

  • Antidepressants: These drugs interfere with the way pain signals are relayed and work well for relieving phantom limb pain for many amputees.

  • Anticonvulsants: These are thought to work by calming damaged nerves so the pain signals are either slowed down or blocked.

  • Narcotics: Not everyone is a candidate for taking narcotics, but there are some cases where the pain is so severe that, in the right dosage monitored by a physician, they can control this type of pain.

  • Certain types of anesthetics: Studies have shown that NMDA receptor antagonists, a class of anesthetics, work to block pain signals from nerves and may relieve phantom limb pain.

All of these medications can have side effects that can cause other complications. Some side effects can cause fluid retention, memory loss and excessive sweating, this can be counterproductive to utilizing prosthetics. Discuss the side effects of any medications with your doctor so that you understand if it may negatively impact using a prosthesis.

Noninvasive therapies for pain management

Some of the following techniques relieve this pain in some amputees. It is really a trial and error process for each individual patient. If one doesn’t work for you, maybe another one will.

  • Heat, cold and manual manipulation: Using a heating pad, ice pack, or massaging the residual limb with a textured material such as a towel.

  • TENS: Transcutaneous electrical nerve stimulation involves attaching a device to the skin near where your limb should be. It sends a “weak electrical current” which interrupts the pain signals before they can reach the brain.

  • Acupuncture: Although it is unknown how acupuncture works to relieve phantom limb pain, it appears that it causes the body to release endorphins which react with neurotransmitters in the brain to relieve pain.

  • Mirror Therapy: For many individuals with one amputation, placing a mirror to reflect the image of the sound leg can reduce phantom pain. You can move the foot and toes of the sound limb but mentally, when looking at the reflection in the mirror, it tells the brain the foot of the amputated limb is there. This technique has helped to relieve the uncomfortable feeling and pain from the amputated limb.

Similar to mirror therapy, Hanger Clinic encourages patients to treat phantom pain is by envisioning the limb and firing the muscles in that limb. Stretch fingers/toes and imaging the limb responding.

Other pain management techniques

There are some minimally invasive procedures that may relieve your pain if none of the other methods have worked for you.

  • Injections: An injection of an anesthetic or pain killer directly into the residual limb has been found to work for some amputees.

  • Nerve blocks: When the limb is amputated, nerves are severed. A medication injected into the spinal column where the nerve originates blocks the pain message. A “continuous peripheral nerve block” is currently being tested to see if it will provide long-term relief for phantom limb pain sufferers.

  • Surgical intervention: If nothing else helps, there may be surgical options determined on an individual basis.

The goal of pain management is to reduce the intensity and duration of your pain or eliminate it entirely if possible so that you can rebuild your life. If one method doesn’t relieve your pain, do not give up. It can also be very helpful to discuss phantom pain issues with other amputees to understand what has worked for them. Keep experimenting until you find the particular technique that works for you. 

Bilateral amputee, Seth Alexander, poses for cameraHow Seth Alexander Overcame Phantom Pain

Seth Alexander lost both legs above the knees due to severe trauma he suffered in a car accident at 16 years of age. While in the hospital, he was given so much pain and nerve medication that he didn’t experience any phantom sensations or phantom pain. Once he was released and returned to his home, and the pain medication was reduced, he began experiencing phantom pain, which felt like an electric shocks, several times an hour. “In addition to the phantom pain, I experienced phantom sensation that felt like my legs and feet were still there and a tingling feeling would occur in the back of my phantom legs. The phantom sensations of my non-existent legs was just weird, but the phantom pain was very intense and real.”

Some relief came from massaging the ends of his limbs and mobilizing the tissue each time the phantom pain would occur. Also, he noticed that while using his prosthetic legs, the phantom pain would rarely happen. But at night, with the prosthetics off, the phantom pain would again return. Eventually he learned from talking to other amputees, that doing exercises with the phantom toes would dramatically reduce the phantom pain. “I would move the big toe up and down and squeeze all of my toes into a tight fist and then spread them apart again. I would move them all the time, as much as possible. I also learned that standing on the ends of the limbs, while uncomfortable at first, would greatly reduce my phantom pain. It just made sense to me to try and toughen up the skin and nerves that had been cut.” Seth now walks on the ends of his limbs without prosthetics each day, standing in the shower and walking around his house each night. Seth also recommends staying hydrated. “I noticed that phantom pain was much more intense when I didn’t drink enough water.” These techniques worked for Seth. Today, he can’t even remember the last time he experienced phantom pain.

Seth would like to share these words of insight about his experience with phantom pain and phantom sensations:

“I would first suggest to get with their doctor to develop a step down program to completely get off all of the pain and nerve medications. The real recovery begins when you massage the ends of the limbs, doing the toe exercises and start putting direct pressure to the ends of the limbs. Start by standing on a soft cushion until you can take more and more pressure. For me, that end pressure taught my brain that my body ends at my amputations and this greatly reduced my phantom pains. Also, the more I used my prosthetics the less I experienced phantom pain. I stretch my legs every morning before I put on my prosthetics. The more mobile you can be and the more you move your limbs the better. Now I am completely pain free and the phantom sensations I have when moving my phantom toes just helps me build up the muscles in my limbs even more. Make the commitment and keep making progress each day. ”

Hear more stories like Seth’s on AMPOWER, a community for amputees and prosthetic users to connect and encourage one another.