Written by: Beth Hudson, LBKA
If I were to ask twenty-five amputees what their phantom pain is like, I would get twenty-five different answers. The brain is the least known and understood muscle in the human body, and phantom pain attests to how much little we know about how it works.
Also known as Phantom Pain Syndrome, the medical definition is “the perception of sensations, often including pain, in an arm or leg long after the limb has been amputated. Phantom limb syndrome is relatively common in amputees, especially in the early months and years after limb loss.”
That’s a very generic definition, which encompasses many different kinds of pain. Stabbing, burning, throbbing, pinching, and feeling heat are all forms of phantom pain. Some folks experience their pain in the same place all the time, while others have the pain in different parts of their amputated parts. Frequency, duration, and severity are also very individualized, which is why so many amputees ask for help with it, using medications, homeopathy, and/or surgery.
When a surgeon performs an amputation, they not only cut the muscle, bone, and tissue, but the nerves as well. Typically, the nerves are bundled, and the surgeon sews up the incision. If the nerves are just loose and have no place to go, no place to grow, and no “job” to do, they become aggravated and let the brain know that – by signaling pain from the amputated body part. As many of us know, it can be quite debilitating. New surgical techniques have surfaced recently, which I will address in the next post.
And to be clear, there is a difference between residual limb pain and phantom pain. In my own experience, I sometimes can’t tell the difference. When I do have that kind of pain, it starts in my residual limb and just keeps traveling down past my residual limb into the amputated part. It happens very quickly, but it continues as phantom pain – almost like a bolt of lightning. Phantom sensation, which many of us experience, is anything we feel that is NOT pain. For many of us, it is tingling. I’ve even experienced phantom itching (maddening!).
Besides the physical theory of what causes phantom pain, another theory is that of how the brain handles distraction. The more the brain is processing other electrical impulses, the less time it must turn its attention to pain. We have all experienced this when we chose to ignore pain because what we are doing takes precedence. You know, “Oh, how did I get that bruise on my arm?”
There are several non-surgical ways to lessen phantom pain. Not all techniques work for all people, but knowing these techniques may help you find relief: (in no particular order)
- Mirror therapy can help some, but it must be done correctly, and the patient must learn it from a trained professional. A mirror is put between the sound limb and the amputated limb. The eyes see two complete limbs, which, in time, can trick the brain into thinking the amputated limb does exist, and thereby eliminating pain.
- Desensitization – residual limbs can be very sensitive to touch, especially at the beginning. My PT started with a feather and worked up to a washcloth. Tapping the end of the residual limb is another technique. Being able to touch your residual limb will help you with #3.
- Massage – massaging your limb allows for better blood circulation. I have personally found that massage helps me greatly with tingling phantom sensation, which I experience every night when I get into bed. Massage seems to calm it down.
- Ice, heat, or both. If it works and gives you relief, that’s an easy solution!
- Mindfulness and meditation. I really wasn’t sure about the power of the mind to help with this, but with practice, I find the calming of my body and mind helps calm the absent parts. Also, I use biofeedback, which is an even more focused technique than mindfulness, focusing on the physical rather than the emotional or mental aspects of mindfulness.
- CBD products – many amputees find relief through either ingestibles or creams. Finding the right product and the right dosage is up to the user – cannabis production is in its “Wild West” stage – and because it isn’t completely regulated (yet), quality can be an issue. For many it is a great relief, and for others, at the very least, takes the edge off.
- Medication – I started off with Gabapentin, which many amputees take for generic nerve pain, including phantom pain. Another is Lyrica (pregabalin). I took Gab for over a year and noticed it was not really helping. My doc prescribed Lyrica, which works great for some people, but I took one look at the side effects and decided that for me, the cure was worse than the pain. I weaned myself from Gab and now use other techniques to control my occasional phantom pain. There are other medications out there as well; make sure your body can handle both the medication and the side effects.
- Some swear by Vitamin B12.
- TENS unit – Transcutaneous Electrical Nerve Stimulation – this device sends electrical stimulation through your skin. It works by sending electrical stimulation to the nerves.
- Thera-V – This new product can be used on any residual limb. It is a cuff that vibrates. It can be calibrated in many different ways to offer relief and is a non-surgical, non-evasive alternative to TENS.
- Guided Virtual Reality – New research is upcoming in this field. The theory is that if the brain is otherwise engaged, it won’t recognize phantom pain because it is too busy processing the VR. See my previous post for more in-depth information.
- Pain Management – There is no shame in wanting to live your life without pain – if you can’t find relief, a pain management center is a good place to start for expert and professional care.
For any amputee, new or not, dealing with phantom pain can be debilitating. Suffering in silence and thinking that it’s just part of being an amputee is something we need to fight. Just by the nature of becoming an amputee, we deal with pain. Why should we feel that we should just deal with it for the rest of our lives? We need to speak up about phantom pain to our doctors and have access to solutions that help us lead our best lives.
And remember: You never know how much strength you have until you are called upon to use it.