Describing your pain precisely can help your doctor pinpoint your problem. Even though it's common to have phantom pain and residual limb pain at the same time, treatments for these two problems may differ — so an accurate diagnosis is important. Phantom limb pain (PLP) refers to ongoing painful sensations that seem to be coming from the part of the limb that is no longer there. The limb is gone, but the pain is real.

The onset of this pain most often occurs soon after surgery. It can feel like a variety of things, such as burning, twisting, itching or pressure. It is often felt in fingers or toes. It is believed that nearly 80 percent of the amputee population worldwide has experienced this kind of pain.

The length of time this pain lasts differs from person to person. It can last from seconds to minutes, to hours, to days. For most people, PLP diminishes in both frequency and duration during the first six months, but many continue to experience some level of these sensations for years.

People are often reluctant to tell anyone that they are experiencing PLP or phantom limb sensations, for fear that they will be considered “crazy.” However, it is important to report these pains as soon as you begin to experience them so treatment can be started.

What Causes Phantom Limb Pain? (Amputee, 2020)

Unlike pain that is caused by trauma directly to a limb, PLP is thought to be caused by mixed signals from your brain or spinal cord. This is an important concept to consider, because the treatment for this pain has differences from the treatment you would receive for other kinds of pain. New therapies for PLP all involve trying to change the signals from your brain or spinal cord.

As with any other kind of pain, you may find that certain activities or conditions will trigger PLP. Some of these triggers might include:

• Touch

• Urination or defecation

• Sexual intercourse

• Angina

• Cigarette smoking

• Changes in barometric pressure

• Herpes zoster

• Exposure to cold.

If you notice any particular thing triggering an episode of PLP for you, let your healthcare provider know. Some triggers can be avoided – for example, you can prevent constipation or stop smoking. For other triggers, you will just have to understand and treat accordingly. You will not be able to prevent the barometric pressure from changing, but you will be able to understand that your PLP might be more severe on days with big shifts in the weather!

People are often reluctant to tell anyone that they are experiencing PLP or phantom limb sensations, for fear that they will be considered “crazy.” However, it is important to report these pains as soon as you begin to experience them so treatment can be started.

Treating Phantom Limb Pain

Treating PLP effectively takes a multipronged approach. Medications of several different categories in combination with non-medication treatments seem to be most effective. This combination of medication/non-medication is similar to treating other painful conditions.

For instance, if you broke your leg, you would expect to take narcotic pain medication, at least for a while. You would also elevate your leg and put ice on it.

For PLP pain management, you will take medications directed specifically toward interrupting the pain signals in your brain or spinal cord as well as using certain non-medication therapies, which also work on your brain’s interpretation of these signals.

Medications for Phantom Limb Pain

There are many different categories of medications that can decrease your pain. Each of them is thought to work on different kinds of pain sensations. The categories of some of the medications you might be given include:

• Acetaminophen and non-steroidal anti-inflammatory drugs (NSAIDs)

• Opioids (narcotic pain medications)

• Antidepressants

• Anticonvulsants

• Beta-blockers

• Muscle relaxants.

Some of these medications work best if taken in combination with other medications and if given at certain times of the day. The antidepressants typically used work best if given at bedtime, and are often taken at the same time as the anticonvulsants. Finding the right medications – with the fewest side effects – will require you and your healthcare provider to work closely together.

Non-Medication Treatments for Phantom Limb Pain (Clinic, 1998 - 2021)

Alternative/complementary therapies can be helpful for the reduction of PLP. These include:

• Acupuncture

• Massage of the residual limb

• Use of a shrinker

• Repositioning of the residual limb by propping on a pillow or cushion

• Mirror box therapy

• Biofeedback

• TENS (transcutaneous electrical nerve stimulation)

• Virtual reality therapy

• Imagery

• Music.

For further discussion of these non-medication treatments for phantom pain, click here to access an article addressing the topic from the Amputee Coalition’s InMotion magazine.

There are also many videos online demonstrating how these therapies have worked for others and how they might work for you.

Treatment

Finding a treatment to relieve your phantom pain can be difficult. Doctors usually begin with medications and then may add noninvasive therapies, such as acupuncture.

More-invasive options include injections or implanted devices. Surgery is done only as a last resort.

Medications

Although no medications specifically for phantom pain exist, some drugs designed to treat other conditions have been helpful in relieving nerve pain. No single drug works for everyone, and not everyone benefits from medications. You may need to try different medications to find one that works for you.

Medications used in the treatment of phantom pain include:

• Over-the-counter (OTC) pain relievers. Acetaminophen (Tylenol, others), ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve) might relieve phantom pain. Take these medications only as directed by your doctor. Overuse can cause serious side effects, such as stomach bleeding.

• Antidepressants. Tricyclic antidepressants may relieve the pain caused by damaged nerves. Examples include amitriptyline, nortriptyline (Pamelor) and tramadol (Conzip, Ultram). Possible side effects include sleepiness, dry mouth and blurred vision.

• Anticonvulsants. Epilepsy drugs — such as gabapentin (Gralise, Neurontin) and pregabalin (Lyrica) — may be used to treat nerve pain. Side effects may include dizziness, sedation and mood changes.

• Narcotics. Opioid medications, such as codeine and morphine, may be an option for some people. Taken in appropriate doses under your doctor's direction, they may help control phantom pain. However, you may not be able to take them if you have a history of substance abuse. Even if you don't have a history of substance abuse, these drugs can cause many side effects, including constipation, nausea, vomiting or sedation.

• N-methyl-d-aspartate (NMDA) receptor antagonists. This class of anesthetics works by binding to the NMDA receptors on the brain's nerve cells and blocking the activity of glutamate, a protein that plays a large role in relaying nerve signals. In studies, NMDA receptor antagonists ketamine and dextromethorphan helped relieve phantom pain. Side effects of ketamine include mild sedation, hallucinations or loss of consciousness. No side effects were reported from the use of dextromethorphan.

Medical therapies

As with medications, treating phantom pain with noninvasive therapies is a matter of trial and observation. The following techniques may relieve phantom pain for some people:

• Mirror box. This device contains mirrors that make it look like an amputated limb exists. The mirror box has two openings — one for the intact limb and one for the residual limb. The person then performs symmetrical exercises, while watching the intact limb move and imagining that he or she is actually observing the missing limb moving. Some studies, though not all, have found that this exercise may help relieve phantom pain.

• Acupuncture. The National Institutes of Health has found that acupuncture may ease some types of chronic pain. In acupuncture, the practitioner inserts extremely fine, sterilized stainless steel needles into the skin at specific points on the body. Acupuncture is generally considered safe when performed correctly.

• Repetitive transcranial magnetic stimulation (rTMS). This therapy uses an electromagnetic coil placed against the forehead. Short pulses are sent through the coil that cause small electrical currents in the nerves located in a specifically targeted area of the brain. Research suggests that this therapy may be helpful for phantom pain, though it isn't yet specifically approved for this condition. The magnetic field is similar to the one used in MRI scans. Side effects may include a mild headache or lightheadedness.

• Spinal cord stimulation. Your doctor inserts tiny electrodes along your spinal cord. A small electrical current delivered continuously to the spinal cord can sometimes relieve pain.

Surgery

Surgery may be an option if other treatments haven't helped. Surgical options include:

• Brain stimulation. Deep brain stimulation and motor cortex stimulation are similar to spinal cord stimulation except that the current is delivered within the brain. A surgeon uses a magnetic resonance imaging (MRI) scan to position the electrodes correctly. Although the data are still limited and these treatments aren't specifically approved for phantom pain, brain stimulation appears to be a promising option in selected individuals.

Potential future treatment

Newer approaches to relieve phantom pain include virtual reality goggles. The computer program for the goggles mirrors the person's intact limb, so it looks like there's been no amputation. The person then moves his or her virtual limb around to accomplish various tasks, such as batting away a ball hanging in midair. Although this technique has been tested only on a small number of people, it appears to help relieve phantom pain.

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If you or anyone you know is suffering from pain, call us today on (469) 562 4188 to book an appointment with our expert doctors.