The appendage may be gone, but the pain lives on. Phantom limb pain refers to painful and lasting sensations that radiate from a limb, extremity or other body part that is no longer connected to the body. In this guide, we’ll look at what to expect and provide practical tips on how to manage phantom limb pain.
Phantom limb pain 101
The suffering caused by phantom limb pain isn’t uncommon. Between 60-80% of all amputees experience some kind of phantom limb sensation. Many also experience residual limb pain.
Though the exact cause of this condition is unknown, the pain is thought to be related to pain signals getting crossed as they travel from the brain to the spinal cord. Nerves that originally sent impulses from the limb to the brain continue to send information until the brain rewires itself and adjusts to the changes.
Let’s look at some important facts on phantom limb pain:
- Sensations are frequently “triggered by the perception of salient events, thoughts, and feelings.” However, researchers point to the need for more evidence that it may be linked to a psychological disorder.
- Phantom limb sensations are experienced in 85% to 98% of amputees within the first 3 weeks post amputation.
- Many amputees can recover from this pain without treatment or pain medication.
- Research shows that almost 80% of amputees experience this pain while just over 67% experience residual limb pain. Both of these conditions can affect an amputee at the same time.
Symptoms of phantom limb pain
The length of time you experience pain is likely to differ from others who live with this condition. Occasionally, it may last only a few minutes. For others, it may be a chronic pain for years. It can feel like:
It may also bring back the pain felt at the time of injury. For instance, pain experienced at the time of a car accident may be felt in the amputated limb or even the non-amputated part of the limb.
Click the video below to learn more about the science of phantom limb pain:
Pain can arise from one’s activities
While the brain is adjusting to the absence of the body part, it finds new nerve pathways to send neural information. This can trigger phantom limb pain from activities that did not involve the original limb. Such activities include:
- touching another part of the body
- going to the bathroom
- experiencing stress and anxiety
- having poor blood flow and chest pain (angina)
- experiencing changes in outside barometric temperature
- feeling fatigued
- having sexual intercourse
- becoming exposed to herpes zoster
- smoking cigarettes
- experiencing fluctuations in blood pressure
- having an ill-fitting artificial limb
- becoming exposed to the cold
Changing activities can help relieve pain symptoms
You may be able to avoid the pain by identifying the activities that trigger it. These may include:
- changes in diet
- irregularities in the gastrointestinal system
- smoking cigarettes, drug use, or alcohol abuse
- spikes in blood pressure
- traveling during storms and between low and high elevations
Not necessarily always a pain
This condition may also leave you experiencing non-painful sensations. This is because the brain needs time to relearn its newly-modified nervous system. You may find the sensation similar to feeling like wearing a piece of jewelry or clothing. Or you may feel like your limb is still attached and able to move as it used to.
Treating phantom limb pain
Fortunately for some people living with this pain, it is a fleeting experience. Symptoms may disappear over time. But others need treatments for phantom limb pain.
Common medications such as acetaminophen, aspirin and ibuprofen can help provide pain relief. Tricyclic antidepressants have also been shown to reduce pain. Tetracyclic antidepressants such as mirtazapine, “an alpha 2 receptor antagonist with fewer side effects than tricyclic antidepressants” also reduce pain.
Other effective treatments can include:
- gently tapping, rubbing or massaging the area that the missing limb was once attached to or the other existing limb
- supplying cushioned support to the affected area
- wearing a compression sock
- decreasing any swelling in the area with an elastic bandage
- changing the surrounding atmosphere to a more relaxing one with music or lighting
- applying low-frequency brain stimulation with electromagnetic therapies
- transitioning a prosthesis (how long its worn, its positioning, etc)
- working with physical therapy specialists
A multifaceted approach is the ideal treatment plan. This will likely focus on taking pain medication for a short time while tackling rehabilitation to help your body adapt. With progress, you can reduce your dosage or find that you no longer need medication.
The bottom line on managing phantom limb pain
The world of health care research and practice now recognizes the legitimacy of phantom limb pain after years of patients complaining and feeling dismissed. If you are experiencing this condition, be open and honest about it with your health care team. It may be an indicator that something is happening during the body’s natural healing process.
Some sufferers may be unwilling to report phantom limb pain. They may subscribe to the belief that it’s a psychological concern that they need to get over. While the pain can certainly be influenced by stress, anxiety or depression, the physical pain is real and is something that can be effectively treated.
How do you manage your phantom limb pain?
Tell us what works for you – and what doesn’t – in the comments. We’d love to share your story. Reach out to us at firstname.lastname@example.org.
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The team at Pain Resource updated this post in April 2019 with new information and resources.