Phantom Limb Pain

September 28, 2021 Jessica Kluetz

Phantom pain after amputation.

Recently, I wrote on what to expect in the first couple of weeks after a lower extremity amputation. In that post, I briefly touched on the pain that is often experienced, more specifically, phantom limb pain.

(Related blog post: Coping With Amputation)

So what is phantom limb pain? Simply stated, it is pain that feels like it is coming from a body part that is no longer there.

Phantom limb pain is very common.

Phantom limb pain occurs in up to 80% of the amputee population within the first week of amputation (1). The pain usually starts within the first week of the amputation though may not start until a few months later. No matter when the pain begins, it can often be debilitating and can be very difficult to treat. I wanted to go through some possible treatment options for managing this pain.

Phantom limb pain and how it occurs can be complicated. There are many different hypotheses of how phantom pain develops, and all of these trains of thought/beliefs have helped to guide the treatment mechanisms we use to help to manage phantom limb pain. There is much thought that the brain and spinal cord are getting mixed signals because there is a portion of a limb that is no longer there. Not knowing what to do with these mixed signals, the brain decides to call this confusion pain.

There is also belief that damaged nerve endings and scar tissue at the site of the amputation may also contribute to the phantom pain. Another thought is that pain in the limb prior to the amputation can lead to phantom pain because the brain “remembers” this pain. This idea is supported by an increased rate of phantom limb pain in those with pain in the limb prior to the amputation.

Let’s start with the last idea I mentioned, the brain “remembers” the pain. This is an important thing to remember if you have a loved one who might not have an amputation just yet but could potentially need one in the future. If a person has pain in the limb prior to amputation, research shows that performing a nerve block prior to the surgery can decrease the risk of developing this phantom pain. It will also provide relief from the usual post-surgical pain.

Managing phantom limb pain.

There are many medications that can be used to manage pain. Some of these were originally used as anticonvulsants (prevent or stop seizures), but have since been shown to significantly help with nerve-type pain such as phantom limb pain. Many physicians, including myself, often will use particular antidepressants, as some particular ones have also been shown to provide relief from pain associated with a previous amputation. I have had patients on narcotics for management of this pain, however, for myself and the majority of other rehabilitation physicians, this is usually a last choice medication given the adverse effects of using narcotics for a long period of time. Unfortunately, this might be the only thing that provides relief and improves function in people who have employed all the other options.

Now that I have touched on the pharmacologic (medication) treatments for phantom limb pain, I want to move onto the non-pharmacologic, or non-medication treatments. The first thing I discuss with my patients in rehabilitation following an amputation is phantom limb pain and the importance of starting treatment early for it.

Under the guidance of the therapist, usually the occupational therapist, we begin limb desensitization. Just as the name implies, the patient begins touching the end of the residual limb, getting it used to this new sensation. There is a gradual advancing to more rough textures so that the limb becomes less sensitive.

Some other techniques include the use of acupuncture. Acupuncture is used for the treatment of chronic pain and has been found to be effective in treating phantom limb pain in some users.

Another technique used by many physical and occupational therapists is mirror box training. The participant puts both affected limbs into two separate openings in a box. The box has mirrors in it that give the appearance of two full limbs to the user while he performs exercises with the limb. There have been studies that have shown this can provide pain relief.

Another treatment I have used on my patients is the TENS (Transcutaneous Electrical Nerve Stimulation) unit. Without going into the science behind it, the TENS unit sends small, painless electrical pulses through the surface of the skin to the nerves causing a reduction in the perception of pain. This cannot be used when someone is wearing the prosthesis, but it has provided good relief when the prosthetic is not being worn.

These phantom pain control treatments are the more common methods of treatment I have used in my years of practice. There are other options available, but I wanted to highlight the more common methods. Phantom limb pain can significantly interfere with function. If your loved one is experiencing this pain, remember there are many options for treating the pain. What works for one person might not work for another, but it is worth trying several options to get the pain controlled.

Kehlet H, Jensen TS, Woolf CJ. Persistent postsurgical pain: risk factors and prevention.Lancet. 2006;367:1618-1625.

Feeling overwhelmed with the process?

Afraid you may not make the right decision at the right time? This stage of life for you and your aging parent often brings more questions than answers. Reading information from a trusted source like me can help guide you in the process. However, if you still feel overwhelmed, don’t hesitate to reach out to me. I am happy to help with a personalized plan for your unique situation.