After an amputation, your nerves continue to send signals to the brain. Most amputees will tell you even after amputation, they can move their fingers or wiggle their toes even though they don’t have these body parts. For this reason, many amputees suffer from phantom pain.
“Phantom limb pain refers to mild to extreme pain felt in the area where a limb has been amputated. Phantom limb sensations usually will disappear or decrease over time; when phantom limb pain continues for more than six months, however, the prognosis for improvement is poor.”
9 years after my surgery, I still get phantom pain, normally 5 to 10 times a year. I get a lot of amputees who message me about what to do to relieve such pain.
#MyPhantomPain feels like getting electrocuted repeatedly. Sometimes this pain wakes me up in the middle of the night and I spend hours awake in agonizing pain. Sometimes it’s so painful I feel like the only way I could possibly stop it is by stabbing myself. Following advice on the internet, I’ve tried massaging the area or taking medication but nothing works. #MyPhantomPain is like a storm, all I can do is wait for it to pass.
Up until recently, I thought every amputee experienced this pain more or less the same, until I met Emily who described her pain and it was completely different from my experience. Using the hashtag #MyPhantomPain, I’ve asked 7 of my favorite bionic divas to explain what their phantom pain feels like and what they do to make it better.
When I first experienced a phantom sensation, it wasn’t necessarily pain. In fact, my perception of my “phantom foot” was a lot more detailed than I expected. To this day, for some reason (I chalk it up to synesthesia) I imagine my phantom limb as a foot inside of an inflated red balloon. If I flex familiar muscles I can feel the relative parts of my foot touching the red latex barrier.
Shortly after this red balloon realization, I began to experience the real sensations that every amputee is familiar with. At first, it was burning. I swore I could feel my foot crisping as my leg reacted to the nerve pain, and it would stay ignited for hours. After the flames died down I still felt the residual trauma from the “burns.”
I also experience the infamous electrocution-knee-jerking-abrupt pain after long days of wearing a prosthesis. Occasionally at night when my body and muscles finally have time to relax, #MyPhantomPain was small insects digging around through my leg. It didn’t necessarily hurt but the itching was unbearable.
To relieve myself of these nonexistent ailments I tended to baths, massages to the “red balloon” and cannabis with high CBD content. -@amputeen
#MyPhantomPain feels like my fibula and tibia are being broken in half. #MyPhantomPain feels like lightning bolts shooting up and down my residual limb. #MyPhantomPain feels like a throbbing-cutting off circulation sensation…. Just to name a few…..
Every amputee deals with their phantom pain differently. For me, the first few years post amputation I found that a mixture of painkillers, massage and a relaxing hot bath helped. Twelve years later and over 100 lbs weight loss, my phantom pain is much more manageable. #MyPhantomPain depends on my activity level, the weather, the fit of my prosthetic socket. I no longer use prescribed medication and very rarely use over the counter painkillers. I exercise daily to increase circulation, watch my sodium and sugar consumption, practice good mental health and I am much more familiar with my own personal limits. One of the hardest battles for me, was learning how to say ‘No’ to people, It’s ok to want to stay in bed, It’s ok to take a weekend to yourself, and it most certainly is ok to ask as many questions you need. My advice to any new amputees would be to familiarize yourself with local resources (every province, state, country are different) and to research as much as possible around post amputation. Phantom pain sucks, it’s annoying, frustrating, and sometimes unbearable but I promise you that it does get better. There most certainly is light at the end of that tunnel. You are stronger than any physical pain you could ever endure. -@ariellevienneau
#MyPhantomPain feels like a really sharp shooting pain, it’s itchy sometimes which really makes me crazy because I go to itch the spot realizing my limb is not there. Sometimes I also feel like my toes are on fire and tightening. I find that massaging my residual limb helps as it helps me to forget about the phantom pain or wearing a compression sock also helps with the pain. -@ash_unique_chick
#MyPhantomPain felt like a large fishing hook had been pierced through my big toe with the sensation of it being pulled down through the ground. Like a fish continuously being reeled in. Soon after I had my amputation I would lie on the ground crying in pain. However, I found that when I was able to distract my mind from the pain it would slowly subside and the hook would eventually “release”. Swimming then became my method of distraction. The exercise forced my brain to concentrate on other neurological pathways while also acting as a coping mechanism to the emotional stress of having just gone through cancer and an amputation. -@emilyannegray
#MyPhantomPain feels like fire ants crawling up my foot and leg. I have realized it gets worse when I am generally unwell (sick, cold, even on my period) or dehydrated. If I stay on my hydration and keep my immune system boosted I rarely get them.
If you can relate to us, using #MyPhantomPain share your experience on Instagram and I’ll make sure to check it out.
EDIT: Interesting article
para mi el dolor fantasma es una corriente electrica que va desde el pie hasta la cadera, recorriendole de ida y vuelta como loca ! soy LHD, otras veces es una pesadez increible como si trajese una pesa en la ridilla, otra es que siento como un grupo de hormigas me recorriese la pierna entera, otra es que siento como si trajese la pierna atada bien fuerte, que no pudiese moverle,y si a veces son periodos cortos y otras son horas eternas y horrendas.
The question regarding mirror box therapy. I’ve been an upper arm amputee for 3.5 years now and this therapy was suggested by my 1st therapist. It had no effect on me until I experimented with the positioning of the mirror. All we were trying to do is to help with the phantom arm and hand exercises for dexterity to prepare for a myoelectric arm. All of a sudden it was as if the light turned on when we tucked the device closer and higher. All my exercises became quick and easy, I finally had full control of my phantom limb.
Hey Mamacax! You are such an inspiration! I have been an amputee for almost 19 years due to an accident I had when I was 6 years old. I had been struck by a delivery truck and immediately had my whole right leg amputated. I have been feeling the phantom limb pains since then and they seem to get worse as I get older. I am now 25 years old(11/30, day of the post) and I some how now know how to sooth them. The pain gets really bad when there’s a change in the climate/weather and humidity and heavy precipitation. I also get it when I am getting sick with a cold or stomach virus. What usually helps is when I drink hot herbal teas and take hot bubble baths. Exercising also helps!
I have an idea on how to treat phantompain and if someone live in Stockholm, Sweden and would like to try it out please write me.
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I’ve noticed that my phantom pain is somewhat tied to the weather — similar to arthritis and barometric pressure. I live in the Pacific Northwest and on days that my arthritis is acting up (when a rain system or cold front cold front are moving in), it seems that the nerves in the distal end of my leg are awake and firing on all cylinders.
Mama Cax, can you (or anyone who has tried it) tell us a little about the therapy you tried? The idea of mirror box therapy is relatively new idea of how to change brain memories of pain which is very interesting to me.
Have any of you had any experience with mirror / mirror box therapy? If so, did it offer you any relief?
I’ve tried it but was a bit weird. didn’t do anything for me. From my research I recall reading that it’s more effective on upper limbs. Unfortunately everyone featured here has lower limb amputation- but ladies, if you are reading and have tried it, feel free to chime in. Thanks