Phantom pain is real and a fairly common side effect of limb loss. It can range from annoying to debilitating on the pain scale. However, there are many treatment options that range from simple exercise to a cocktail of medications and everything in between.
We consulted with physical therapist Cosi Belloso and Paralympic champion and prosthetist Greg Mannino to address the unique issues associated with phantom pain. To get more detailed information, see the VitalFit webinar titled “Dealing with Phantom Pain.”
What is phantom pain?
Belloso defines phantom pain as, “pain where your arm or leg used to be.” While doctors aren’t entirely sure why some people feel phantom pain, Belloso explains that the predominant theory is that when the limb is amputated, the nerves continue to try to send signals to the brain.
In response, the brain tries to send those signals back, but it sends signals of the last thing felt in the limb, which may have been very painful. Mannino says that how you got your amputation and any traumas associated with it can contribute to phantom pain.
Phantom pain is different from phantom sensation and residual limb pain. “With phantom sensation, you can feel your [amputated] foot or your hand, but there’s no pain associated with it,” says Belloso.
Residual limb pain originates in the residual limb itself. It’s usually caused by other issues going on in the residual limb, such as bone spurs or neuromas.
Unpredictability of phantom pain
Phantom pain is a strange thing in that it can show up right away, within a week of limb loss, or it can begin weeks or months later. It may come and go with no distinct cause. As Belloso puts it, “If there’s anything consistent about phantom pain that I’ve seen, it’s that it’s inconsistent.”
Belloso stresses that those who experience phantom pain are not imaging it. Images taken of the brain during phantom pain episodes have shown increased activity in the areas of the brain that connected to the amputated limb. It’s very real.
Phantom pain triggers
How and when you feel phantom pain will be unique to you. With careful observation, some people identify triggers. Common triggers include:
- Human touch
- Cold weather
- Urination or defecation
- Chest pain
- Changes in barometric pressure
- Increased activity
Any or none of these may trigger phantom pain for you. Try to pay attention to when your pain starts. Take note of the time of day, your energy levels, and what you’re doing or have been doing throughout the day. Any noticeable patterns can help treat the pain more effectively.
How to manage phantom pain
We can’t cover all the pain treatment options here, but we wanted to give you a good idea of the breadth of treatments available. Some you can do at home, while others require close monitoring by a doctor trained in pain management.
Non-medicated treatment options
Both Belloso and Mannino prefer to start with non-medicated treatment options. The goal of these treatments is to change the way the brain interprets signals from the nerves in the residual limb. These conservative treatments don’t require a prescription, and, consequently, they don’t have the side effects or drug interaction issues of medication. However, they require more consistency and generally take more time and effort to see results.
Mannino often starts his patients with general exercise that can be as simple as walking every day. Building strength, balance, and endurance reduces the aches and pains that trigger phantom pain.
Take care of your skin before starting an exercise routine. Keep it moisturized with VitalFit Day Moisturizer, which contains antibacterial and antifungal ingredients. If you experience chafing, apply Liquid-to-Powder Plus before exercising to reduce friction.
Massage therapy for the residual limb
Mannino himself has gotten relief from phantom pain in his residual limb thanks to massage therapy. However, it might take a few phone calls and trial and error to find a masseuse experienced in or who has the right technique to successfully manipulate an amputated limb.
Mirror box therapy
Mirror box therapy is a unique and inexpensive treatment that you can do at home. This technique uses a mirror to help the brain remap signals and reduce pain.
It involves either holding or mounting a mirror and placing it between the sound limb and residual limb. When you look at the mirror, your brain sees two sound limbs. That alone can sometimes reduce or stop phantom pain. Belloso has had success with patients wiggling the toes of their sound limb, reaching to touch the sound limb, or reaching down to touch where their amputated limb would be.
Belloso warns that it works great for some and not at all for others. If you try this option, try to reduce other stimuli in the room by keeping light and noise levels low.
Wear a shrinker
Many people have phantom pain after they take their prostheses off for the day. The limb has been under pressure all day, and the nerves can start firing when they’re no longer under that same pressure. A shrinker puts pressure on the residual limb and can help calm the nerve endings.
Other non-medicated treatments:
- Virtual reality therapy
- Guided imagery
- Warm/cold therapy
Medicated treatment options
The goal of medicated treatments is to block or interrupt signals from the brain rather than redirecting them. These options range from over-the-counter pain relievers like acetaminophen, Tylenol, Advil, and ibuprofen to more powerful prescription medications like codeine, morphine, and tramadol.
Some drugs are used off-label, which means they’re prescribed to treat phantom pain even though the FDA has officially approved them for other uses. Antidepressants, beta-blockers, and anticonvulsants are among the drugs that have shown some success for phantom pain though they’re meant for other illnesses and conditions.
If your pain has reached the point where you want to try medication, Belloso and Mannino recommend seeing a pain specialist. These doctors are trained in the unique ways these powerful medications interact with your physiology, and they’re more aware of how the medications interact with one another and other medications you may be taking.
If you have phantom pain, there are many treatments available. It might take some time to find one that works for you. Don’t be afraid to consult a physical therapist, prosthetist, or doctor that’s familiar with phantom pain. Just know, you’re not alone in your discomfort, and there are many options to try.