I had my foot removed when I was a baby, and I've never experienced phantom pain. Young children's brains and nervous systems can adapt really quickly, and I think this is what happened after my amputation. So, there wasn't really a time when the signals were "getting lost in translation."
My friend has a dog who had to have part of his tail amputated and the dog still bites at the missing part of his tail. It’s kinda cool how your brain adapts to the body part being there so when it’s removed the brain still thinks it’s there.
My uncle's dog (who also had his tail amputated) does the same thing! That makes me feel so bad for all the dogs whose tails are intentionally "docked" (amputated) by humans...
my dog had her leg amputated (fully removing the shoulder bone) about 7 years ago I believe? and to this day when she sleeps the area where the shoulder once was twitches along with her remaining legs, as dogs tend to when they dream.
i have a rescue dog with a short tail who always bites at it. we were told that his tail is naturally short, but this makes me think otherwise. interesting.
Phantom sensations are incredibly bizarre! That was something that surprised me a lot. Still being able to feel my foot that doesn’t exist is hard too describe. Great video!
Go through this with my missing kidney, my brain still thinks it's there, and will remind me with the same pain as before. I guess scar tissue is real, and like Jo said, the science behind it is...... Interesting.
I have been able to feel my foot and toes everyday after my amputation. It is strange and rather hard to describe to all the two legers around me. they just say it's gone how could you still feel it? And footless Jo is pretty great she helped me decide to have my foot amputated. she helped me with the fear of it all and showed me that there is A better life ahead. Also I was able to find people like you who also have been rather helpful. So thank you once again. love you all
My brother had very bad phantom pain, the nerve to his right arm was broke after bad motorbike crash, he refused to have his arm amputated, but did end up having his hand amputated, the nerve in the shoulder caused him no end of agony even though it was not working. He sadly passed 2 yrs ago. When he was in hospital he taught himself to write and draw left handed, he went on to become an architecture desgmer, got married, have 2 children, plus 7 grandchildren, and 4 great grandchildren, passed away Yr before 2 more great grandchildren were born. He was and is my hero.
I had a below the knee amputation a few months ago. I can still feel my feet and "wiggle" my toes. It's the weirdest feeling ever. So far my phantom pain has been minimal. I sure hope it stays that way...
Hi Jo! I’m a biomedical engineering student and I’ve been watching your videos for just over a year now and I just wanted to say thank you! It was through your videos that I discovered my passion for prosthetics which is the field I’m now studying to get into :) and I also wanted add onto the topic of cures for phantom pain, there’s currently quite a lot of research developments in nerve treatments, mostly for nerve related chronic pain disorders, and some of the research is being translated into phantom pain treatments. theres also some robotic prosthetics that interface with the nerve endings in the residual limb that have shown to reduce phantom sensations although those are more invasive solutions. myoelectric prostheses could also provide positive physiological effects on phantom limb pain similar to the mirror exercise, except instead of watching a reflection move you’re watching your robotic limb move.
No and since the pain that you are feeling is your head telling you that you are having pain. Over the years I have just learned to deal with it. But I do know that everyone is different so stay positive and you can get through it
Hi Jo! I too am a BK (left leg) amputee. I had my surgery on Nov 2, 2018 after dealing with a serious foot infection for over a year. My experience with phantom pain has been very minimal, and I am extremely grateful for that! I do experience the phantom sensation of my missing foot and toes daily. And like you, I feel like I can wiggle my toes and move my foot and I see the muscles in my stump trying to do this. It has become clear to me that the human nervous system is probably the most fascinating, complex, and powerful part of the human body. I do have a theory about my lack of phantom pain. Prior to getting the infection, which started as a callous on the outside edge of my heel, I had fairly extensive diabetic neuropathy in both feet. I spent the majority of a year with a gaping open hole in my heel. Went thorough multiple debridements and wound vac therapy. For the most part, I never felt any of it. No pain at all. So my theory is that I had had the neuropathy for so long, my brain had already reprogrammed itself (those nerves are dead, don't worry about them). Now here's the fascinating part about the nervous system. Since the amputation, nearly all the phantom pain that I have experienced has been a ripping, stabbing, tearing sensation of a giant open wound on my heel, right where the real wound was, that I never felt while it was really there. Figure that out! The human body is amazing!
I've heard a theory that if a pain is constant the body will kind of turn down the problem on pain. So for example people with chronic pain might report some discomfort where another person would be in agony. So maybe if you were feeling lots of heel pain, your body chose to ignore it over time? I'm not a medical person, so I'm not sure if that makes sense. The body also doesn't remember pain very well (which is why women have multiple babies). So I guess your body may also have forgotten some of the pain you used to feel?
@@hannahk1306 that's a good theory, but I don't think it applies in my case. Diabetic neuropathy is a lack of sensation caused by nerve damage. The nerves literally die over time.
@@hannahk1306 I kinda get where you're coming from, but also would put a slightly different spin on it. My pain tolerance and relation in which I see things has changed. The pain is just as debilitating, I've just learned to know when it's possible to better it and how, how to tolerate it when not, and knowing pain that immobilizes/takes my breath momentarily (not as a method to deal with it, but physically impossible due to "pain overload"), my pain scale (1-10 that some like to use) has now been for a while - "If I am at a ten, you shouldn't have to ask anymore, I'd be passed out from the pain." (Thank God, I haven't experienced that! - yet?) Also generally have issues with the pain scale, but oh well... About not remembering pain well - well, yes and no. One of the main reasons women get more children is that the pain is worth it in the end (I've known/heard of a few women whose experiences were so bad they decided against another child and stuck with it, years later, too). However, phantom pain going on for decades proves that our brain remembers exactly how the pain felt even decades later. Also - for some trauma survivors - body memories (you feel, though you don't remember the situation - or perhaps they go hand in hand)... And empathy - why do we flinch when a kid scrapes its knee? (And for most, especially adults, it's probably been quite a while since we last felt the pain.) We know how it feels and commiserate. So, while the body's ability of adaptation to pain is insane, mind-blowing! It also remembers it frightingly well. We do put things into different relations and perspectives as we age, grow, mature, though. :)
Interesting before I had my foot amputated I had A big toe amputated some times that toe hurts. I also have diabetic neuropathy. I have been taking med for that for 8 years. Now you got me thinking.
@@tabitas.2719 This got me thinking. I think phantom pain may be the brain and nerves having pain memories of the accidents/ infections and surgeries amputees go through. Just a theory. On an aside, I hope everyone with high diabetes has their condition under control now...
Not moving the puppy is extremely important and just makes me love you all the more! This is a fantastic video btw, fascinating topic and extremely interesting and educational information from you. As always you bring intelligence, kindness, humor, honesty and love to this video. Thank you for showing us the amazing person you are outside and in 😊.
I’m not an amputee but I have a spinal chord injury. I definitely experience many aspects of what you’ve described. I get zapping electric pain in my ankles and toes even though I have no sensation in my lower leg. My brain does not register that I own a pair of feet. It sounds like you experience this more intensely than I do. For me it’s moderate pain a couple times a day. I never thought of it as being phantom pain but I suppose it kind of is even though I have both feet. It sounds like you’ve really honed your coping skills and you deal with this really well. Maybe time will shift the pain in a better direction for you.
30 year T12 para here, the zaps are a real pain in the knees for me! I have broken both ankles, burned my feet, had a spiral fracture of the left Tib & fib and broken my hip and never felt the pain from those but the constant asleep feeling from knees to toes and the zaps do get tiresome !
@@evanburroughs9329 that sounds familiar. I’m an L4 para and the zapping usually starts in my knees but it radiates to my ankles and feet. I’ve burned my feet numerous times (don’t fall asleep with your iPhone charging next to your feet in bed) and never felt a thing. The zapping is tiresome for sure. Also phantom itching is super annoying.
Check out part 2 here! ua-cam.com/video/uYxby6uJJRM/v-deo.html Thank you again so much to Surfshark for sponsoring today's video! Enter promo code FootlessJo for 83% off and 4 extra months for free! 💜 surfshark.deals/FootlessJo
I watch you to see what’s coming next for me. You have been so helpful through your videos. Thank you! I would like to know the timeline and also HOW physically you learned to run again. It’s intimidating and scary!
It’s very fascinating so. If anyone have ever been in vr there is some people that experience phantom touch. I play a game in vr called vrchat it’s a social game you can make avatars and be that avatar meet people across the world it’s kinda cool. I’ve never had a missing limb but in the game I have phantom touch which every thing that happeneds to my character like say someone touching me in game I feel it on my actual body even though I’m by my self. I’ve met people that has phantom pain in this game and phantom heat and cold like if someone was cuddling them they would feel the heat off that persons body. The brain is sooo cool
Hey I was not even looking for you but somehow you showed up on my feet I'm scheduled to lose my legs come December 21st and I'm kind of scared and nervous about it but I know the decision to do it how did you get through it
Hey, I'm working at a research center in Sweden (CBPR, Center for Bionics and Pain Research) where we develop a new treatment for Phantom limb pain. I find your videos super interesting. Maybe we could do a collaboration somewhere in the future once our new treatment is in a stage where it can be used for testing outside of our center!
@Mirka Buist That's so cool! That's exactly the type of thing I want to do for a living, but I haven't found the right resources to help direct me in choosing the right path to get there. May I ask what your college major was? What majors do those around you (involved in the design of treatments, research studies, etc.) typically have, and what level of degree do they typically attain?
@@jacobjohnson8686our research group is a combination of a lot of engineers (electronics, mechanics, biomedical engineering) from MSc students, Ph.D. students up to PostDoctoral employees, as well as a couple of physiotherapists. The physiotherapists and biomedical engineering staff are involved in the treatment design and execution while the other engineers are involved in technology development.
My first experience with phantom limb/phantom pain [PL/PP] was in the middle of the night on the third day after the amputation of my left forearm and hand. I got awake screaming...the pain was off the 1-10 pain scale - unlike anything I'd ever experienced. I thought I had a high threshold for pain - not so with phantom pain! Prior to the amputation, the strongest pain med I took was aspirin and that was rare because I understood that 'pain' was a 'get your attention' mechanism. Well...the following day after my first PL/PP experience, I was hooked to a morphine pump just so I could get some sleep. After rehab, I had to wean off the drugs, one of which was a neural blocker. When people ask me what PL/PP is like I tell them it's like I'm at the edge looking in at the abyss of insanity. Mirror therapy didn't work for me. What did work for me was subliminal music therapy. I also flex my elbow and 'stumpy' rapidly for a one hundred count several times a day. Talk about mind games...every once in awhile I get this 'notion' that my right hand misses his buddy the left hand. The first time I experienced that notion the tears flowed and I wasn't even aware I was crying. Something other then the PL/PP experience is my sense of balance prior to amputation is gone. I'll never forget my first public outing to do some shopping with Wal-Mart being the first stop. Given my balance issues, this overwhelming 'dread' [fear] hit me like a ton of bricks as soon as I saw someone with a shopping cart fly by. To say my life is different since my amputation is an understatement - I've learned to do most things differently. When people ask me what's life like with only one hand, I tell them to turn a sock inside out with one hand to get an idea of how my life rolls now. Life goes on at a slower pace...which ain't a bad thing! Thanks for sharing your PL/PP experience - I applaud your courage! Cheers...
I've had terrible phantom pain for 32 years. I am an above knee amputee as a result of bone cancer. I lost two whole nights just this week with burning painful jolts and spasms. You are right when you say there is no real remedy. I use a hot water bottle and sometime alternate with ice or my cold aluminum crutches. It can briefly distract but those cursed electrical bolts and spasms just go on and on all night and usually subside around 7 or 8 am in the morning. What is most depressing is the fact there is no rhyme or reason to them so I cannot adjust my daily habits to lessen their frequency. They often reduce me to tears due to the pain and exhaustion. I have a weekly pain patch which releases drugs into my body through my skin and I also take palexia and opioid based drug which sometimes works well and on other occasions I may as well have swallowed a couple of chocolates! I have had two operations on my stump in the last 5 years with minimal success. They reduced the frequency of my phantom pain episodes which are not the same as phantom sensation but these sensations still keeps me up for hours on bad nights. That's more like a fierce tingling buzz like when you wake up with a dead arm from sleeping on it awkwardly. Any way, thanks for this video. I think I'm stuck with the bloody phantoms to the end of my days.
I use a cbd patch.Tried everything incl morphine for severe ibs pain 50mg every 24 hours. It worked. Pain free after 5 miserable years of severe abdominal pain. This is a friends i pad but i would love to know if you try the cbd non thc patch lm Corinne Black of Hereford Stree Brighton. England. BN2 1JT. Will endeavor to answer all replies ❤❤❤❤❤❤❤
@@matthunter2413 I have just finished my first bottlle of marijuana (CBD) and got to the stage where I was taking 0 .8 ml in the morning and 0 .8 ml at night. I'm sad to say after initially thinking I had found a genuine remedy I have pretty much been experiencing the same pattern of pain with good days in between that I have always had. My doctor suggests I try one more 30ml bottle and start at 0.8 ml morning and night rather than build up to it and see what happens. At this stage I am fairly pessimistic. Thanks for your help.
your closing statement of "choosing to hang out" was so sweet! i was watching your video while i drew because i get lonely/bored when im making art by myself. ive been watching your videos for the last week and have found them so interesting and educational. thanks for everything you do!
Nothing like waking up to the feeling of Planters Facia or an arch cramp, when there is no foot there or in my case both. It's unreal how very painful Phantom Pains can be. Jo you Rock!
I have been an AK amputee for 3 1/2 years. You are spot on with "what" phantom pain is and how it effects us. Our brain does NOT rely on eyesight and seeing that we are missing a limb. Hands, feet, legs and arms disappear from our "field of vision" all the time, like when sitting at a table or desk. Therefore, the brain doesn't rely on eyesight. This is how I deal with my phantom pain. I "talk to my brain" NOT my pain or missing leg. I made a "deal" with my brain. "We" agreed to stop the pain and itching "signals" and replace them with pressure and tingling "signals". You have probably heard a song called "My own worst enemy". After I started talking to my brain, we have become best friends, instead. I believe that phantom pain may be triggered later in the day when we become "mentally tired". One of the saddest things about my phantom pain and my amputation in general, was that there was NO ONE who could talk to me about it. You see, a "physician" deals only with the physical body that remains. I have yet to find a single doctor who would even listen to me about phantom pain. In our present culture with the "pain pill epidemic", people just assume we are trying to get high. A doctor could even get in trouble for writing a prescription for phantom pain. Pain pills didn't work for me either. What did work, came out of the Holy Bible. Jesus said " Love your neighbor as thyself (yourself in modern English)". And, "speak to your "mountain ". I hope you don't mind me going there, but I too, had a "falling out" with the church, but not with God or Jesus. The best advice I can give any amputee is learn to communicate with your brain and stop being your own worst enemy. I talk out loud to my brain. It is looking for a way to replace the "lost data" that was once coming from my leg. By talking out loud, I am sending new data to my brain thru my hearing. Yes, people will call you crazy for talking to yourself. THAT'S THEIR PROBLEM, NOT YOURS!
Like you I talk to my phantom pains and tell them that they are fake and they go away, I am a BTK amputee as of September 12,2021 and getting my prosthetic training leg today February 2,2022 and my permanent one next week
@@proudcynophile1901 telling anyone that I have pain even though I don't have any physical place for it, I think, is so far from "normal", may cause a glitch for them. So, which is crazier of the two?
Hi Jo, I am a BTK right leg coming up 2 years now. This video is so accurate. I experience 95% of what you describe. The mirror therapy not so much. I did it in rehab for 5 weeks solid and no difference. As far as how long does phantom pain last, I've been told from a few months to a couple of decades !!! It's just part of life now.
This is the channel I didn't expect to stumble upon, have nothing in my life that is even remotely related to the subject, yet I'm here and it's really cool how you describe all the challenges and issues that I'd never imagine before. And also didn't expect that there are so many aspects how it affects your or other amputees lives. Great respect!
I have chronic nerve pain and sometimes when it’s so bad, I wish I could just cut off the body part. Not really, but that’s what my brain wants in that moment of agony. Your story is really helping me put my situation into perspective.
I have a friend who’s an amputee. He said he can feel his toes still and can feel pain sometimes. He also said his prosthetic sometimes pushes up against his leg and can hurt when putting pressure on it.
I found out about you from yt shorts and I instantly loved your personality. I’ve never even heard of the term amputee or phantom pain before and now I’m trying to learn more about it. Just thinking about that is so crazy, you’re a really strong person and thank you for sharing your stories!
I suffered significant damage in the Army in the 70s. The pain slowly subsided over the years. 8 months after I retired(10 years ago) I woke up and realized that I wasn't in pain. That lasted a few hours. Look forward to it getting better. For pain relief, try self hypnosis. When done right, you can escape the pain for hours. Good Luck, Rick
A weird question I get asked sometimes is “do you feel your feet if you’re not in a pain episode?” And people find it weird if I ask them if they feel their foot if they didn’t hurt it in some way.
Hello. I experience phantom pain every single day. It SUCKSSSSSSSSS! I hate it. For me it started in 1989, 32 years later and still hurting. Like you i have tried many different things to help with varying degrees of benefit. Ultimately the benefit has been minimal. Thank you for making this video. It is tremendously helpful. It validates what i experience. While i know others experience it, there really is no one else that understands. A lot of time feeling like a freak because of spasms that make me flinch or grab my nub and massage. Thank you so very much!!!!
I am one of the new viewers coming from the shorts, and I am so fascinated by your story that I can’t stop watching. I would never want to see anyone go through this but you make the best of it and I just really enjoy that
7:00 Not sure this will work for phantom pain, but when my stump cramps, squeezing it with my hands really really hard helps make the cramp stop. The trick is not letting go too soon.
My friend accidentally broke my pinky toe once and I still feel the pain sometimes. Never had it amputated but sometimes when I hit it on something very lightly the pain is so excruciating that it feels like I broke it again, sometimes it even goes numb. It’s never happened to my other pinky toe (the extreme pain/numbing sensations) so it’s just really interesting to me how major injuries without amputation can still lead to phantom pain/sensations. Great video and very informational and it helps me understand the world of amputees a whole lot better!
Hi jo! I recently found your channel and I love your positive energy!! You seem like a really chill, funny person that would be cool to be around, so thank you for sharing your personality with us along with all of the interesting (and useful) information on what life is like for an amputee ❤️
I have a question regarding phantom limb sensation! Do you feel your phantom foot as it was right before the amputation (horseback riding injury and all) or do you feel it as a healthy/uninjured foot with full range of motion? This is so fascinating! Thank you for sharing!
While I can't answer for her, I can answer for myself. Mine was osteomyelitis that ate my Achilles tendon and had the option to either lose it or go through a series of surgeries that might save it, but was likelier to end up gone anyway, so I chose the option that didn't exactly have an open ended recovery date. Not actually feeling anything due to diabetic neuropathy didn't exactly make the decision harder. Now that the how is out of the way, I do feel significant pain occasionally where the back of my ankle would be. Mainly when trying to sleep and I forgot my gabapentin/Neurontin. More often it's just stabbing/electric pain in the big toe from the neuropathy which makes my leg involuntarily straighten in response. Luckily prescriptions have worked for me, but sometimes need an out of cycle dose. P.S. Nurses look at you funny when you say no to painkillers with an open gaping wound because it doesn't hurt.
Also a baloney (below knee) amputee. Phantom p ain hasn't been too bad, but the feeling my foot and t oes are still there is freaky. I had my amputation in July of 2023, so it has only been 5 months. The strangest phantom sensations so far have been the day I forgot my leg was missing, stood up and fell over and a day I was outside in the cold for 5 minutes. My remaining leg was not cold, my body wasn't cold, but the missing calf and foot were. Thanks for sharing Jo.
Im wondering if having your prosthetic on and rubbing the fake foot/leg helps to stop the pain since you are actually physically touching something in the area where your foot/leg would be? I am a nurse who works with patients with amputations regularly and my most recent patient just had an AKA and was not complaining of pain to her stump but to her groin and inner thigh muscle... is this something you have experienced or have an explanation to? I was just curious if that is related to phantom pain since I'd never had a patient with such severe pain but not to the surgical site. Thanks!
Fellow nurse here and I was wondering about scratching the prosthetic when the phantom limb itches! Maybe the tactile sensation of not touching skin would cancel out any possible relief though?
I've heard a bit about Phantom pain and people being able to feel individual parts of their missing part while in pain in random threads on the internet. However, I've never thought that you could always have that connection in your head and feel the individual parts even when not in pain. Very insightful. Great video! :D
I dated a double amputee and he definitely had phantom pain and itching for sure. I really appreciate you bringing your normal to help us understand what it is like for you!! Bless you stay sweet!!
I'm not really sure if this has been suggested to you already, but there are a lot of studies going on about psychedelics and how they can eliminate phantom pain. There's been cases where amputees took MDMA (under supervision with a therapist) and eliminated phantom pain in 6 weeks. Being in Colorado, I don't think that you would have any trouble finding a resource that can help! I really really encourage you to look into it, because the science behind it is pretty solid
I had a portion of my index finger amputated a number of years back and to this day it is still significantly colder then the rest of my hand no matter what I am feeling elsewhere
I lost my index finger on my left hand. Being a guitarist it kind've put a damper on my studio work, but honestly it's fun again. I had an itch right behind the fingernail, and no amount of nub rubbing or anything else would stop it. Finally, in a bit of being silly, I scratched the air where it would be, and it STOPPED! It's done that several times. Sometimes I'll feel like someone is holding my finger folded to my palm tightly and I have to actually look at my hand to get it to go away
I am a bka, I had my first amputation in June of this year. I woke up from surgery and the phantom pain was there and in full force right away. Mine was more like my toes were being contorted and shoved into a toddlers shoe. It has continued pretty consistently for the last 6 months. Toe and foot contortions are really common. I, like you, have most of my pain in the evening and the super crazy thing is I have found that rolling or shaking my stump bank and forth while extended really helps. I am so glad that there are nerve pain meds they are helpful for me. However, I am scheduled for a second amputation and TMR on the same leg on the 2nd of December. I have watched you since I decided to amputate and you have been a wealth of knowledge and you have helped me more than you can ever know. Thank you so much!
Hi, Jo! Like you said on another of your videos, everyone's amputation experience is different, but don't give up on mirror therapy. As you probably already know I'm only 5 months post amputation and I started getting phantom limb "sensations" while I was still at the hospital. It's only when I got home that the pain actually kicked in. I have a surgeon friend who worked at Walter Reed Hospital who clued me into the mirror therapy. It has worked! Once in a while I feel my "toes" cramping up and I immediately drag out the old mirror and do 10-15 minutes of "exercises". Then, it goes away, try it again, it may ameliorate the recurrence of PLP.
Jo, I remember you saying something about “phantom itching,” right? If so, I have an observation/question: have you tried ice for itching? When I was an ICU nurse, lots of patients were tortured by itching, and it wasn’t helped by any anti-itch medicine. I discovered that gently stroking the area with an ice cube or ice water soaked wash cloth stopped the itching almost immediately. Also, this was something that family could learn to do, and this helped them feel not so useless. So I have no idea where you’d apply the ice, but I hope you’ll try it and let me know what you think. Thank-you!
I saw another one of your videos a while ago (the one you showed here in reference to the worst phantom pain you've ever felt), but couldn't find you again when I wanted to share something with you. I know many people talk about mirror therapy or electrical/tens therapy, but many amputees I've heard about say they aren't very effective. I am curious why no one talks about EMDR therapy though. It was developed for PTSD and is generally used for people dealing with traumatic events, but there has been research on its use for phantom limb pain and other psychosomatic symptoms. The link between our brains and the rest of our body is pretty awe-inspiring. I was skeptical of the therapy in dealing with my own CPTSD, but it is no joke. Nothing else I've ever tried has helped, until I found this. Hope you find relief sooner rather than later, whatever methods you decide to try.
E M D R is a very effective treatment for various severe conditions. It works in a similar way to Hypnotherapy. It harnesses the brains ability to reduce pain and stress. You can learn to use this yourself. Dr David Whitaker
I've had hip surgery at the end of 2018 and even though I still have all my organic parts, I still get nerve pain on the surgery scar. At the beginning it was intense itching, now it evolved into an occationnal burning sensation on the scar, as if someone was sticking a hot iron on my hip, or if I was standing against a radiator for too long. Sometimes it lasts a few minutes, other times it lasts hours. Bodies are so strange!
Jo, you should try rubbing horse ligament on your leg. Remember horse trainers use it on the ankles and legs of million dollar throughbred horses. That helps them to keep the horses muscles and ligaments in top shape. I have used it for years, and believe me. It works wonders for your aches and pains. Buy some and try it for your phantom pain flare-ups. It can't hurt. You might want to get hold of a large animal vet to find out where you can get it in your area.
Hey Jo! Love your channel! Could you possibly make a video about tips for before a surgery, how to stay calm, etc? I think a lot of people (and me) would find this really helpful! Thanks!
Hi Jo. Thank you so much for this video. I lost my left leg below the knee about three weeks ago and am still in hospital, so I've not had chance to meet other amputees yet, so hearing about your experiences was really useful to me. I know everyone experiences things differently, but I'm amazed by how much of what you have experienced has been the same for me. like you, I experienced the sensation of my leg still being there from the very moment I opened my eyes and I even had to look to confirm my leg had actually gone. Now I am beginning to get pain which I would describe as pins and needles on a very specific part of my phantom foot punctuated with a "cattle prod" feeling every 30 seconds or so. For me, though, it is not unlike the neuropathy pains I experienced before my surgery. I can also wriggle my toes and can feel it if someone puts something down on my bed where my leg used to be, albeit just for a second. In spite of the pain, I have to admit that the whole thing is fascinating. Makes you wonder how much of the physical pain we feel in life is down to an injury and how much it is generated by the brain. Thanks again for the videos...... they are really helping me find my way.
My goodness I had no idea, I’d heard the words ‘phantom pain’ but I’d never any idea how bad it was. You are so good at describing all the realities of living with this. Thank you.
I also left my lower right leg on the operating table. Thank you for bringing this topic up for discussion. I recognize myself in many of your experiences. I wish you a lot of "joie de vivre".
The fact that your phantom pain increases at the end of the day when you’re relaxing combined with the fact that stimulating the end of your leg can sometimes help alleviate the pain makes me suspect that the pain is related to a LACK of stimulation in the area. The brain might get confused because it’s not getting any input from that area and start firing off signals to try to compensate. But when you’re walking around doing stuff during the day, it helps stave off those random firings. Obviously this isn’t a perfect explanation because you get phantom pain while you’re moving around, too, and I don’t know about the tendencies and triggers for other amputees. But this is just where my mind went with how you’ve described it. I just discovered your channel a few hours ago and I’m loving it! I love people who give a candid, inside look at some reality most people are too afraid to ask about. It’s really cool how you’re spreading this insight.
This is one of the videos i watched with my son, during the experiment (why youtube your videos restricted) and i just want to comment after, because he was totally surprised, that you can still feel pain, even if the foot is gone, he has troubles to understand it, we talked a lot about this pains, he even asked if your decision was the right one, because you have pains before, then you cut, but now you have still pain, as i told, he is 8 years old and curious about anything. Thank you for the explanation. To be honest, until i watched your video, i know about the phenomenon phantom pain, BUT what i don't know was, how serious this pain really is, i have no idea that you can suffer so much from this, so i learned many things (like my son), so thank you again :)
I lost my leg when I was 3 years old 54 years ago and I still get phantom pain sometimes not very often but if I meet another amputee that is having a lot of phantom pain then somehow I start to feel it when they get it. It's weird when that happens I am not usually with them but I ask them at a certain time if they were having phantom pain and they always say yes. So the phantom pain has got less over the years but I still do get it sometimes.
I Love and Appreciate your Honesty of your Journey Suffering with this. Great Questions from everyone. My Brother-in-law, who just passed away, lost his entire leg up to his hip, a week after having a Hip Replacement Surgery, and I know he suffered for years with his phantom pain as well. It's such a crazy thing, and so painful at times. Thank you!
Great videos. U asked for possible phantom pain solutions in a video i saw. 1. Farablock prosthetic sock? 2. Relax night care sock? 3. Compression sock? 4. Ace wrap compression? 5. Gel liner compression? 6. Hot cold therapy? 7. Nerve block? 8. Mirror therapy? Good day!
Sometimes I experience so much pain I irrationally ache to amputate certain limbs... but then I recall stories of phantom pain and it helps me snap out of it. Listening to this is very validating somehow. Thank you for sharing.
Anything messing with your nerves is frightening. I never met her, but my great-grandmother had a leg amputation. I remember my mother talking about how she (her grandmother) would still experience a sensation of pain. I was confused, but the way you've explained it makes more sense to me. Thanks!
What's really fascinating is that phantom pain is positively associated with remapping of your somatosensory and motor cortex in your brain. It doesn't really help to know that when the pain sucks, but it's still pretty incredible that your brain can do that.
I have a symes amputation (just above the ankle) of my left foot. The surgery was when I was 8 years old, and I do remember having severe phantom pains for a long time. Especially post-op, the sensation of the foot being SO COLD was awful and my mom would get so frustrated that I begged her to just keep piling blankets on the nothing that existed below my stump. I no longer experience any phantom sensations, but I do still reflexively say "ow" if I stub my fake toe on a table leg or something. I wonder if the persistence of phantom pains is at all related to how old you are at the time of amputation? I can't point to a time I know it went away, but I think I was not having them at all by high school.
I came across your short about going through airport security with your prosthetic. I knew that I had to subscribe! This is strange but I just cried. It’s nice to know that other people have experienced what I am experiencing. My right leg was amputated about 2 1/2 years ago and I am still feeling my phantom limb. I can feel my entire limb, foot, and toes. I also sometimes feel the pain I had with them before my leg was amputated. I was starting to walk again and I had a fall while walking with my prosthetic. I am trying to get back to where I was and it is a difficult journey. I’m still not there but thank you so much for giving me hope. 😊
Phantom sensation honestly seems like the most terrifying side effect in my personal view. I grew up with pretty bad "symmetry compulsion" (thats what I call it, assuming its just a manifestation of OCD), where if I itched or rubbed or poked or whatever one side of my body, I would feel almost like an (overly strong) itch to do it on the other side too. The thought of having those sensations and not being able to address them immediately sounds truly horrible
I'm a bilateral below the knee. Blessed to have my knees. But I saw u do a video when u were having a just horrible pain. U say that it doesn't stop u. They called mine chronic phantom pain syndrome. Sometimes it goes on for days and notes before it'll give.Ive done all I can do. It's been 22 yrs. And I was told it's happened for others to go away and I just keep waiting pretending it'll happen. I goes crazy shaking and jerking hits nerves with my fingers trying to find the nerves to try pressure. The tears use to take over after a day. But its what I was delt. I fell off my roof. It's been a long 22 yrs. I've also become a spinal cord injury patient by shattering my t10. It's been a long road. Got out of back brace in 2020. Lost 115lbs and came off all kinds of meds. I started following u a couple months back. And ur like me. U don't let it stop u. I will fake a laugh before I she'd a tear in front of someone. Keep it up. Someday I need that
I work as a nurse in endocrinology so I meet a lot of patients with diabetic foot ulcers, and amputations are common. If you have untreated diabetes you will lose sensation in your feet and some of my patients have no sensation at all. They can have a wound straight to the bone and they will not feel any pain during wound cleaning or walking. I wonder how phantom pain would affect someone who've lost their sensation that way. Because of how our healthcare system works I only get to follow up on patients days after amputation, and during that time it's mostly surgical pain and not phantom pain. Unless they come back with a complication or a new wound, I never know what happens once they go back home, so I've always wondered about phantom pain and how much it affects their lives afterwards. It's a very interesting topic and thank you for sharing :)
Not an amputee here but I had lateral ligament reconstruction on my ankle a few years ago. One of the possible side effects is nerve damage. I was warned about this and was told sometimes it resolves itself but sometimes it doesn't due to how the body heals and scar tissue. After surgery, I didn't have full sensation of the lateral side of my foot, from just below my incision site, down the top of my foot, to my last three toes. This, I figured, was a fair trade for an ankle that worked and held properly and wasn't grinding my cartilage away by constantly slipping out of joint. Over time, the numb patch decreased until it was just the tops of my last two toes and a part of the top of my foot. Then, one day I felt a needle of fire slice up from between my last two toes, over the top of my foot, up my ankle, up my tibia, all the way to my knee. I almost fell on the floor. It was so sharp and shocking, I didn't know what it was, I thought I had dropped something on my foot or that something had gone wrong with my surgery that, by that point, was almost 10 months ago. It was so weird and intense, it was without cause or trigger, it lasted for however long it lasted and nothing I did could ease or stop it. I just had to wait. That first day was long. The weeks after, interspersed with random jolts. Sometimes, that numb past itched like crazy and I had to start wrapping my foot at night so I wouldn't wake up scratching it raw. This went on for a couple months. Then, at some point, it just stopped. The pain didn't last as long and came farther and farther apart until they just stopped altogether and I had sensation of my toes again. But I never got used to it in that time. It drove me nuts.
I am not an amputee, but at some moments I know exactly what you are talking about. I have some nerve damage from constant subluxations. The worst pain I've ever dealt with was trigeminal nerve pain from inflamed tooth - I was crying, biting myself, wanted to tear out all my hair and bash my head untill unconscious...it was simply bad. Even slight touch on my face could trigger it at any moment. I am glad this pain lasted for just few months and longest attack was about three hours. I can't imagine what it is for people who live with this kind of pain their entire lives. For my normal almost every day nerve pain I am currently trying TENS unit and I hope it will help. I am lucky as stoping any movement in that joint usually helps to stop the pain. Muscle nerve pain on the other hand is so much similar to what you are describing. Just zaps of pain. Sometimes dull, sometimes sharp. It can last for seconds or hours and it usually makes me stop doing anything, as it is super hard to focus.
I'm a bk on the right as well. My surgery was in 2003 & my phantom pain has not eased off. I had cancer in my foot and I can still feel the tumor. And as you experienced my pain didn't start right after surgery either. About 5 to 6 days after surgery I was sitting in a recliner at the rehab hospital and all of a sudden WHAM! It hit. And I too was fascinated by it & I still think it's a crazy thing I just wish I didn't "feel" it so much. Not only do I feel pain, but I also have this odd sensation that feels like little bugs are crawling up & down my leg. And I feel that almost all the time.
I suffer from chronic pain in my legs and feet. When you talked about the pain between your big toe and second toe it really hit home. I've described it as a burning sensation or someone giving me a shot between my toes. I have had some luck with Lyrica and a specific brand of CBD. Now I know you don't have your foot but if you were to apply this CBD topically it might work on those nerves. This is the only thing that brings me back to being a human in the evenings. Why in the evenings? All I know is the more I do the more I hurt so yeah, after 6PM is right. Anyway the stuff I use needs a doctor's script. I got it from my chiropractor. The brand is CBD Clinic, and get the strongest. Level 5. I've tried the strongest from the local dispensary and it might equal level 3 or 4 but why not get the one that works. Its like 90 bucks but you don't need a lot. If I use just a bit of this cream between my toes I'm back to normal in 10 minutes. Hope that helps. Rock On Sister!
@@reddaB i had a microdiskectomy thinking that was causing pressure on a nerve. When I woke up from surgery I knew that wasn't the problem. I've had MRI's and cat scans, they don't see anything. I'm what they call idiopathic.
I have a unique CP disorder and when it was diagnosed I had to go through 8 sessions at a pain management clinic to learn all about pain and pain management. Did you ever have specific education or therapy specifically for your phantom pain? Also, does your phantom pain ever cause pain anywhere else? I know my nerve pain flare usually cause other parts of my body to flare and often lead to migraines as well.
Hi Jo, i’ve been a paraplegic for almost 27 years and this is the first thing I’ve seen regarding phantom pain. It is annoying, very painful and in the evenings never ending. And I personally have my heel feel like somebody is driving some type of a stick through it. But most often it feels like my third and fourth toes always on my right foot are being crushed with a huge wrench and or a clamp. The pain goes from about a constant and annoying 1 up to a 10 or 11 on the scale for about 15/22 seconds and then goes back down to one or two. This goes on for 4 to 5 nights per week when I’m laying down in bed. Of course as I am writing this at 4:20 in the afternoon I all of a sudden get a big one that lasted about 10 seconds. I guess I’m grateful it was just 10 seconds. The only thing I have found it helps somewhat is keeping gabapentin in my system. The other thing is grabbing my leg and shaking and bouncing it on the bed. I don’t feel it but I see it and maybe that has a little bit of pain relief cause. And regarding what you said about banging your foot or what in your case is perceived to be a foot still there, I still, when I bang my foot into a wall or a doorway or a cupboard, crazily or not I will still yell out “ouch, dang it“ when I can’t feel anything technically but yet I do in my head or at least know that it would hurt like a son of a gun. It’s hard to explain to somebody who doesn’t go through it. You did a beautiful job. I’ll be going through your videos are on UA-cam this evening getting more familiar with you and the nerve issue. I know it’s a little help me but it might help me explain to others. And that’s kind of the point of all this. Happy new year, ma’am.
I was amputated when I was 10. My amputation situation is weird and I’ve never heard of being amputated the way I was. Both of my feet were or all my toes (not like half of my feet) and fingertips were amputated due to necrosis and sepsis. I also my horrible phantom pain. I can feel my and I can feel the numbs and move my “toes.” The pain is like pins and needles turned up. Because I don’t have prosthesis I do have cold intolerance so can’t be outside for a long time or else my toes or fingers will turn blue, be very cold, and or the phantom pain hurt. Also because I am short and when my feet are off the ground the phantom pain hurts a lot worse so I have to move or massage it. Thank you @jo for the videos and for being a campion who understands
What about an ice pack? When you put an ice pack on any injury it actually works because your nerves send fewer or sometimes stop sending ‘this is painful’ messages and starts sending ‘this is cold!’ messages. I hope your pain is getting better x
When my mother had cancer she would withdraw and not respond. There was one situation when she woke and had a conversation. I have had extreme pain that made me almost blind. I was told that people with extreme pain often withdraw, as it is so overwhelming. I can certainly understand why a person would not want anyone near by. Hope you have less pain as time goes by.
I'd heard of phantom pain before, but it never occurred to me that this would always be an issue for an amputee. I'm so sorry you're dealing with it although I find your positive attitude remarkable. BTW, I'm not sure how I stumbled upon your channel, but now I'm hooked and have subscribed. Last summer while on vacation, I was wearing thong sandals and walking for miles one day. I gave myself a serious blister on the bottom of my right foot. I compounded the injury by stepping on a sharp object in a hot tub the next evening and completely ripped the blister off. The infection behind the toes was immediate and ugly yet antibiotics seemed to do the trick for six weeks straight. My foot looked great. Two weeks after that? Sepsis and then surgery removing toes #2 and #3 and their "knuckles" eventually followed by 20 days in a different hospital getting a super strong IV med to rid my body of the infection (3 4-hour IVs = 12 hours per day). Before I came home, I had intense tingling on the sole of my right foot. It didn't hurt exactly yet it didn't feel good either. After returning home, I began having very intense pain in the space where the two toes had been. Wow, I never expected that! It only happened a few times and now I'm assuming it may happen again if your video is anything to go by. Forewarned is forearmed. Wishing you the best, Jo.
Hey Jo. Finally, after 14 months of hobbling on the iwalk 2.0 I have started wearing my BK right prosthetic. I have always felt my lower leg and foot even when wearing the crutch. When I lay my legs put next to one another I can reach out and touch where my foot should be. Now, what's weird, I touch about 2 inches higher than normal. My theory is during surgery the doctor stretches the main nerve (ulna, I believe) and it retracted that far up into my leg. I feel like I m have daggers in my foot and leg quite often. I also lost the big toe on my left foot and that constantly hurts. As for the right leg, when it's not stabbing pain, it helps when I wear my leg. When driving, I can actually feel if I bump the brake pedal and need to pull up higher. Walking is about like walking normally. It's overall sucky to not have the leg. And I'm doing hyperbaric therapy for bone infection that could end up with me losing more of my leg, but so far I haven't been totally incapacitated by no leg and the pain. I do take scads and scads of gabapentin.
Does gabapentin help you? It helps my brother with his nerve pain but it doesn't help me with mine, but I was prescribed it again, by my psych for my anxiety oddly enough. Gabapentin has many uses!
I feel your pain i am a right leg below the knee Amputee for 17 yrs now just last week i started having phantom pain in my Stump about a minute apart sharp pains for three days i tried the mirror trick rubbing end of my stump' and even pain meds nothing works i have been on this rodeo many times i just ride it out and Grit my teeth i have even had pain in my left leg thank god this does not happen that often for me any way have a Blessed Day 😇
I will say you being a ampute in itself doesn’t make you strong but being able to adjust so well to this huge change in your life does make you strong. I’ve been a long time fan of yours and I’ve seen you adjust to a new life and it hasn’t been easy and that’s just from what I see. I can’t imagine how tough it’s been while taking care of dogos and running a channel!!!
I am a 58 year old Bilateral Amputee as of 12/13/2021 due to Diabetic complications, and was a life saving procedure. The Phantom pains drive me nuts to the point where I consider causing other pain to myself to distract what is going on. I can't itch what's not there, even on another leg. Electrical Pains make me almost want to jump out of my wheel chair. No amount of shaking my limbs, massaging, pounding, or whatever seems to help. I also have to be careful how I try to stretch my stumps because I get muscle cramps and Charley Horses. I often catch myself swinging my legs and trying to cross them. Sleep is almost non existent because of the phantoms, even with a pillow between the thighs. I can feel every part of the missing limbs as they were before they were removed. It's enough to make a grown man cry!!!! For those who have not lost a limb and you are wondering, It's different than not being born without something. To those people, that is their normal function and their nerve wiring. At least that is what I am told by a friend who was born with no legs.
the phantom pain short was the first video of yours i saw. Thank you for answering these questions! My family member is a double below the knee amputee and isn't willing to talk about it. This has really helped me understand
They chopped my leg off 23 years ago and I still get phantom pain. Also with me it tends to act up whenever someone mentions phantom pain or if I'm somehow reminded of it, though those times it's usually more uncomfortable than painful. Like I feel like the leg is actually there but sort of tingly and stiff and I can actually try to move the nonexistent toes if I really focus. One time as a kid I even remember moving the phantom big toe on top of the toe next to it and getting it stuck there for hours until the phantom tingling went away. But I also have NF-1 so some of the pain might just be symptoms of that since random nerve pain is a symptom of NF-1 even without amputation.
You are on point about everything! At times you think you are the only one going through these things but I was nodding along through your video. I had my RBKA in May 2010 and didn't experience much phantom pain. Oddly enough, after my LBKA in June 2019 I started experiencing more phantom pain on my right. It's not crippling for me. More of an annoyance. Usually rubbing behind my knee helps. The itching though! Those are the most annoying! But I keep a positive attitude and continue on. Thanks!
Finally the vid I was waiting for! I'm not an amputee, but I have small fiber neuropathy and the pain I experience is super similar to what you're describing. For me though, bright lights and dry heat can trigger the nerve pain (bizarre, I know) in addition to the spontaneous zaps/shocks/stabs when just sitting (i get 'em in my hands, feet, and face). Quite the batch of incredible questions that were posed in this vid though, and thank you for answering them! Looking forward to part 2!
The phantom feeling of my foot is strange. Sometimes it feels like my toes are crossed and I have to trick my brain into uncrossing them. The phantom pain and Charlie horse feelings are what I have the most trouble with. Gabapentin is my friend.
@@jeannie2548 the Gabapentin does help. The worst is when it feels like someone hooked up a live electric wire to your stump. I take 850 mg of Gabapentin but I also have to take pain meds but thats also because of other damage from the same car accident. It socks right now because I fell in the bathroom earlier today. So I'm kinda sore. Have a great Thanksgiving.
@@jeannie2548 Got a week on you. Mine was Jan 21 according to the hospital records. Was in coma so had no notice. Took against my wishes. Put this stuff in writing people!! Good luck with your recovery. :)
@@jeannie2548 I had a sore on my foot and visiting nurse said to call ambulance. I remember walking out of my house and sitting on stretcher in my driveway. Woke up about a month later in a different city with no leg. Alone with no discussion. That was my third coma. My friends and family all knew I said no amputations. I get it, saving the patient is normally #1. But now, is it worth it? Not really. Can't go home and my sister lives 3500 miles away. Limbo hell. :(
As someone who is fascinated with artificial intelligence, neurology, transhumanism, and the future advances in medical technology, your description of your experience has given me some insights. Your description of phantom pain is helpful in conceptualizing how the signals between neurons function. Could it be that phantom pain is the effect of neurons constantly pinging their targets, including non-existing ones? From what you describe of your experience, it seems that the expected signal is either lost, or redirected chaotically in an infinite loop. It appears that the only cure to phantom pain is to either find a way to update the brain's inventory record, or to restore the leg with an advanced technology such as nanomachines.
I had my surgery on 2/4/2021. I have had phantom pain maybe 5-6 times since then. I do have phantom sensation all the time. I can feel my toes wiggle, flex my ankle, etc. just rarely pain. I’ve tried many many time to do the mirror therapy. Did nothing for me. What I did have was the bones would literally punch the muscle and nerve and cause a serious Charlie Horse. So I had a revision 8/4/2021 where they secured the bones together so they would not pinch anything again. No issues since. My biggest issue is my health insurance denying me getting a permanent leg. I have the temporary leg that you learn to walk on and use in PT but it’s way too big. Like I put on 20 layers and put the leg on and it was still too big. So we started the process for my permanent leg and the insurance company says the temporary leg should last like 20 years. When it won’t last one year if I could wear it every day. So now I’m having to fight my insurance for my leg so I can walk again.
Sorry to hear this..... My BC / BS allows 1 leg every 3 years..... Got my new custom liner today. I had to use over 11mms of socks to have it fit comfortably enough to walk .....was measured again for a new socket... Yeppers had to fight with the insurance company on this....They just couldn't or wouldn't understand that...... It total BS what they put us through
Just subscribed! My husband is scheduled for his amputation on 2/24. Just recently your videos started popping up on the home list of my UA-cam account.🤔 I’m trying to prepare myself for our new life. On the topic of phantom pain, I’m already concerned for him. He’s battled neuropathy for years and it would make him insane! Your description of phantom pain sounds similar and it scares me to think he’ll be suffering again…it had stopped when the nerves pretty much went dead. The neuropathy caused a disease called Charcot Foot, which after two reconstructions, he’s now dealing with a bone infection requiring a PICC line. The foot has run out of time. To get to the best bone and tissue for healing, he’s having the amputation below the knee. To finally get to my question…if he’s had no significant sensation in the foot for a while now, have you heard of any cases where that would reduce phantom pain? He’s also on the maximum dose of Lyrica and will probably stay on it for the neuropathy in the remaining foot and hands. Does that have any effect on phantom pain? Thanks for sharing your experience and insight. I look forward to checking out your other videos over the next few weeks as I educate myself for the future.
As an abled, I really like to learn through your videos, thank you so much for them! Also it seems to me that you're much more confident in showing your stump (is stump an ok word?), and I'm so happy for you
As I an watching this I am feeling phantom pain because my existing foot is cold. This is what always triggers my phantom pain I will need to get in the shower soon to get warmed up I'll do some work with mirror therapy for about 15 min. this helps quit A bit for me.
when I deal with acute pain, I discovered, that doing sport really helps. Obvouisly in a way, that does not stress the thing that hurts. The aim is to get really exhausted until your muscles start hurting. In that moment endorfines kick in which work way better for me than pain medication. I am curious, if this works for Phantom pain.
Wow! Those questions were so good. I would never have thought to ask some of them. Very interesting! Also, have you heard of TSR? It's related to TMR but not the same thing--interested to know if they had done both or just the TMR.
Actually, I haven't heard of TSR - definitely going to look into that now!! And I love the questions people asked - some I never would have thought to answer!
@@FootlessJo it's basically the other direction. TMR (targeted muscle reinnervation) is a procedure for the nerves that carried information from your brain (or spine) to your lower leg (ex. the nerves that allowed your brain to tell your muscles in your foot and ankle to move--your motor nerves) but TSR (targeted sensory reinnervation) is for your nerves that carried information from your lower leg back to your brain or spine (the nerves that allowed your foot to tell your brain what sensations it was feeling for example that you just stepped on a surface and more specifically what that surface felt like on your foot, like the temperature and texture, etc.--your sensory nerves). The brain and the limb communicate in both directions but TMR is reinnervation of nerves signaling from brain (or spine) to leg and TSR is reinnervation of nerves signaling from leg to brain (or spine).
I’m obsessed with this topic lately. This is so bizarre and fascinating. I’m curious if this phenomenon is limited only to amputees or if people who were born without a limb or a major deformity also experience this. Also, if you’re having a phantom pain and you are wearing a prosthetic, does it help to treat the prosthetic as if it was your actual leg? Like if you have a foot cramp and you massage your prosthetic foot, does that trick your brain into relieving the pain?
I really appreciate what you're doing with your online voice, and the conversations, awareness and acceptance that you are fostering. You've taken lemons and made some wonderful lemonade, and blessed a lot of people. Plus you are entertaining, upbeat and inspiring. Two thumbs and one big toe up!
![The bizarre ways your body adapts after losing a limb 🦿 [CC]](http://i.ytimg.com/vi/UcBDdxs_Wos/mqdefault.jpg)
![The Toughest Thing After Amputation is NOT What You'd Expect! [CC]](http://i.ytimg.com/vi/OZgYUCaDnfk/mqdefault.jpg)
![Lp. Сердце Вселенной #60 РОЖДЕНИЕ ЛОЛОЛОШКИ [Финал] • Майнкрафт](http://i.ytimg.com/vi/YoR0pAV9FVQ/mqdefault.jpg)
I had my foot removed when I was a baby, and I've never experienced phantom pain. Young children's brains and nervous systems can adapt really quickly, and I think this is what happened after my amputation. So, there wasn't really a time when the signals were "getting lost in translation."
That makes perfect sense and is so interesting!! I just never thought about the possibility/scenario. Thanks for this information. :)
Interesting
One of classmates didn’t have phantom pain. The coma may have recalibrated it.
That’s probably the best thing about getting an amputation done as a baby is your body isn’t used to the limb before it’s removed
If you are comfortable sharing what happened to you? We're you born with a birth defect or something? (No hate just trying to understand)
That's so not fair. You chop your bloody foot off and still get so much pain... makes me feel so mad at the injustice of it all. You're a legend.
Ikr? Like goddamit she had her foot cut off, it’s not even there anymore so can’t it just leave her alone?
Biology and nature is not interested in your Justice
@@thereisnosanctuary6184 🙄
@@thereisnosanctuary6184 shut up
My friend has a dog who had to have part of his tail amputated and the dog still bites at the missing part of his tail. It’s kinda cool how your brain adapts to the body part being there so when it’s removed the brain still thinks it’s there.
Oh my gosh haha no way!
If he's biting at it then maybe that's an indicator that he's experiencing phantom nerve pain too.
My uncle's dog (who also had his tail amputated) does the same thing! That makes me feel so bad for all the dogs whose tails are intentionally "docked" (amputated) by humans...
my dog had her leg amputated (fully removing the shoulder bone) about 7 years ago I believe? and to this day when she sleeps the area where the shoulder once was twitches along with her remaining legs, as dogs tend to when they dream.
i have a rescue dog with a short tail who always bites at it. we were told that his tail is naturally short, but this makes me think otherwise. interesting.
Phantom sensations are incredibly bizarre! That was something that surprised me a lot. Still being able to feel my foot that doesn’t exist is hard too describe. Great video!
They are seriously so mind boggling to me. Scientifically really cool - but when they're physically painful, not the best lol!
@@FootlessJo agreed. I tried to research my way out of them and that didn’t happen. Lol
Go through this with my missing kidney, my brain still thinks it's there, and will remind me with the same pain as before. I guess scar tissue is real, and like Jo said, the science behind it is...... Interesting.
@@forrestcollective9184 interesting! I didn’t consider organs. The human body is fascinating!
I have been able to feel my foot and toes everyday after my amputation. It is strange and rather hard to describe to all the two legers around me. they just say it's gone how could you still feel it? And footless Jo is pretty great she helped me decide to have my foot amputated. she helped me with the fear of it all and showed me that there is A better life ahead. Also I was able to find people like you who also have been rather helpful.
So thank you once again.
love you all
My brother had very bad phantom pain, the nerve to his right arm was broke after bad motorbike crash, he refused to have his arm amputated, but did end up having his hand amputated, the nerve in the shoulder caused him no end of agony even though it was not working. He sadly passed 2 yrs ago. When he was in hospital he taught himself to write and draw left handed, he went on to become an architecture desgmer, got married, have 2 children, plus 7 grandchildren, and 4 great grandchildren, passed away Yr before 2 more great grandchildren were born. He was and is my hero.
I had a below the knee amputation a few months ago. I can still feel my feet and "wiggle" my toes. It's the weirdest feeling ever. So far my phantom pain has been minimal. I sure hope it stays that way...
Hi Jo! I’m a biomedical engineering student and I’ve been watching your videos for just over a year now and I just wanted to say thank you! It was through your videos that I discovered my passion for prosthetics which is the field I’m now studying to get into :) and I also wanted add onto the topic of cures for phantom pain, there’s currently quite a lot of research developments in nerve treatments, mostly for nerve related chronic pain disorders, and some of the research is being translated into phantom pain treatments. theres also some robotic prosthetics that interface with the nerve endings in the residual limb that have shown to reduce phantom sensations although those are more invasive solutions. myoelectric prostheses could also provide positive physiological effects on phantom limb pain similar to the mirror exercise, except instead of watching a reflection move you’re watching your robotic limb move.
As I am also an amputee. You can relate when I say you know it’s cold when all ten of my toes are cold
Haha exactly and so true!!
Hi do pain meds help u with phantom pain
No and since the pain that you are feeling is your head telling you that you are having pain. Over the years I have just learned to deal with it. But I do know that everyone is different so stay positive and you can get through it
Hi Jo!
I too am a BK (left leg) amputee. I had my surgery on Nov 2, 2018 after dealing with a serious foot infection for over a year. My experience with phantom pain has been very minimal, and I am extremely grateful for that! I do experience the phantom sensation of my missing foot and toes daily. And like you, I feel like I can wiggle my toes and move my foot and I see the muscles in my stump trying to do this.
It has become clear to me that the human nervous system is probably the most fascinating, complex, and powerful part of the human body.
I do have a theory about my lack of phantom pain. Prior to getting the infection, which started as a callous on the outside edge of my heel, I had fairly extensive diabetic neuropathy in both feet. I spent the majority of a year with a gaping open hole in my heel. Went thorough multiple debridements and wound vac therapy. For the most part, I never felt any of it. No pain at all. So my theory is that I had had the neuropathy for so long, my brain had already reprogrammed itself (those nerves are dead, don't worry about them). Now here's the fascinating part about the nervous system. Since the amputation, nearly all the phantom pain that I have experienced has been a ripping, stabbing, tearing sensation of a giant open wound on my heel, right where the real wound was, that I never felt while it was really there. Figure that out! The human body is amazing!
I've heard a theory that if a pain is constant the body will kind of turn down the problem on pain. So for example people with chronic pain might report some discomfort where another person would be in agony.
So maybe if you were feeling lots of heel pain, your body chose to ignore it over time? I'm not a medical person, so I'm not sure if that makes sense.
The body also doesn't remember pain very well (which is why women have multiple babies). So I guess your body may also have forgotten some of the pain you used to feel?
@@hannahk1306 that's a good theory, but I don't think it applies in my case. Diabetic neuropathy is a lack of sensation caused by nerve damage. The nerves literally die over time.
@@hannahk1306 I kinda get where you're coming from, but also would put a slightly different spin on it. My pain tolerance and relation in which I see things has changed. The pain is just as debilitating, I've just learned to know when it's possible to better it and how, how to tolerate it when not, and knowing pain that immobilizes/takes my breath momentarily (not as a method to deal with it, but physically impossible due to "pain overload"), my pain scale (1-10 that some like to use) has now been for a while - "If I am at a ten, you shouldn't have to ask anymore, I'd be passed out from the pain." (Thank God, I haven't experienced that! - yet?) Also generally have issues with the pain scale, but oh well...
About not remembering pain well - well, yes and no.
One of the main reasons women get more children is that the pain is worth it in the end (I've known/heard of a few women whose experiences were so bad they decided against another child and stuck with it, years later, too). However, phantom pain going on for decades proves that our brain remembers exactly how the pain felt even decades later. Also - for some trauma survivors - body memories (you feel, though you don't remember the situation - or perhaps they go hand in hand)...
And empathy - why do we flinch when a kid scrapes its knee? (And for most, especially adults, it's probably been quite a while since we last felt the pain.) We know how it feels and commiserate.
So, while the body's ability of adaptation to pain is insane, mind-blowing! It also remembers it frightingly well. We do put things into different relations and perspectives as we age, grow, mature, though. :)
Interesting before I had my foot amputated I had A big toe amputated some times that toe hurts. I also have diabetic neuropathy. I have been taking med for that for 8 years. Now you got me thinking.
@@tabitas.2719 This got me thinking. I think phantom pain may be the brain and nerves having pain memories of the accidents/ infections and surgeries amputees go through. Just a theory. On an aside, I hope everyone with high diabetes has their condition under control now...
Not moving the puppy is extremely important and just makes me love you all the more! This is a fantastic video btw, fascinating topic and extremely interesting and educational information from you. As always you bring intelligence, kindness, humor, honesty and love to this video. Thank you for showing us the amazing person you are outside and in 😊.
I’m not an amputee but I have a spinal chord injury. I definitely experience many aspects of what you’ve described. I get zapping electric pain in my ankles and toes even though I have no sensation in my lower leg. My brain does not register that I own a pair of feet. It sounds like you experience this more intensely than I do. For me it’s moderate pain a couple times a day. I never thought of it as being phantom pain but I suppose it kind of is even though I have both feet. It sounds like you’ve really honed your coping skills and you deal with this really well. Maybe time will shift the pain in a better direction for you.
30 year T12 para here, the zaps are a real pain in the knees for me! I have broken both ankles, burned my feet, had a spiral fracture of the left Tib & fib and broken my hip and never felt the pain from those but the constant asleep feeling from knees to toes and the zaps do get tiresome !
@@evanburroughs9329 that sounds familiar. I’m an L4 para and the zapping usually starts in my knees but it radiates to my ankles and feet. I’ve burned my feet numerous times (don’t fall asleep with your iPhone charging next to your feet in bed) and never felt a thing. The zapping is tiresome for sure. Also phantom itching is super annoying.
I wish you well…
Check out part 2 here!
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Can we be friends?
I watch you to see what’s coming next for me. You have been so helpful through your videos. Thank you! I would like to know the timeline and also HOW physically you learned to run again. It’s intimidating and scary!
It’s very fascinating so. If anyone have ever been in vr there is some people that experience phantom touch. I play a game in vr called vrchat it’s a social game you can make avatars and be that avatar meet people across the world it’s kinda cool. I’ve never had a missing limb but in the game I have phantom touch which every thing that happeneds to my character like say someone touching me in game I feel it on my actual body even though I’m by my self. I’ve met people that has phantom pain in this game and phantom heat and cold like if someone was cuddling them they would feel the heat off that persons body. The brain is sooo cool
Thank you. 3 months out from BKA. This is really helpful
Hey I was not even looking for you but somehow you showed up on my feet I'm scheduled to lose my legs come December 21st and I'm kind of scared and nervous about it but I know the decision to do it how did you get through it
Hey, I'm working at a research center in Sweden (CBPR, Center for Bionics and Pain Research) where we develop a new treatment for Phantom limb pain. I find your videos super interesting. Maybe we could do a collaboration somewhere in the future once our new treatment is in a stage where it can be used for testing outside of our center!
Let’s upvote this so Jo can see!!
Good luck!! It’s really awesome that you’re working on that, it’ll benefit a ton of people
Could you share a bit more info about this treatment? How does it work?
@Mirka Buist That's so cool! That's exactly the type of thing I want to do for a living, but I haven't found the right resources to help direct me in choosing the right path to get there. May I ask what your college major was? What majors do those around you (involved in the design of treatments, research studies, etc.) typically have, and what level of degree do they typically attain?
@@jacobjohnson8686our research group is a combination of a lot of engineers (electronics, mechanics, biomedical engineering) from MSc students, Ph.D. students up to PostDoctoral employees, as well as a couple of physiotherapists. The physiotherapists and biomedical engineering staff are involved in the treatment design and execution while the other engineers are involved in technology development.
My first experience with phantom limb/phantom pain [PL/PP] was in the middle of the night on the third day after the amputation of my left forearm and hand. I got awake screaming...the pain was off the 1-10 pain scale - unlike anything I'd ever experienced. I thought I had a high threshold for pain - not so with phantom pain! Prior to the amputation, the strongest pain med I took was aspirin and that was rare because I understood that 'pain' was a 'get your attention' mechanism. Well...the following day after my first PL/PP experience, I was hooked to a morphine pump just so I could get some sleep. After rehab, I had to wean off the drugs, one of which was a neural blocker. When people ask me what PL/PP is like I tell them it's like I'm at the edge looking in at the abyss of insanity. Mirror therapy didn't work for me. What did work for me was subliminal music therapy. I also flex my elbow and 'stumpy' rapidly for a one hundred count several times a day. Talk about mind games...every once in awhile I get this 'notion' that my right hand misses his buddy the left hand. The first time I experienced that notion the tears flowed and I wasn't even aware I was crying. Something other then the PL/PP experience is my sense of balance prior to amputation is gone. I'll never forget my first public outing to do some shopping with Wal-Mart being the first stop. Given my balance issues, this overwhelming 'dread' [fear] hit me like a ton of bricks as soon as I saw someone with a shopping cart fly by. To say my life is different since my amputation is an understatement - I've learned to do most things differently. When people ask me what's life like with only one hand, I tell them to turn a sock inside out with one hand to get an idea of how my life rolls now. Life goes on at a slower pace...which ain't a bad thing! Thanks for sharing your PL/PP experience - I applaud your courage! Cheers...
I've had terrible phantom pain for 32 years. I am an above knee amputee as a result of bone cancer. I lost two whole nights just this week with burning painful jolts and spasms. You are right when you say there is no real remedy. I use a hot water bottle and sometime alternate with ice or my cold aluminum crutches. It can briefly distract but those cursed electrical bolts and spasms just go on and on all night and usually subside around 7 or 8 am in the morning.
What is most depressing is the fact there is no rhyme or reason to them so I cannot adjust my daily habits to lessen their frequency. They often reduce me to tears due to the pain and exhaustion.
I have a weekly pain patch which releases drugs into my body through my skin and I also take palexia and opioid based drug which sometimes works well and on other occasions I may as well have swallowed a couple of chocolates!
I have had two operations on my stump in the last 5 years with minimal success. They reduced the frequency of my phantom pain episodes which are not the same as phantom sensation but these sensations still keeps me up for hours on bad nights. That's more like a fierce tingling buzz like when you wake up with a dead arm from sleeping on it awkwardly.
Any way, thanks for this video. I think I'm stuck with the bloody phantoms to the end of my days.
I use a cbd patch.Tried everything incl morphine for severe ibs pain 50mg every 24 hours. It worked. Pain free after 5 miserable years of severe abdominal pain. This is a friends i pad but i would love to know if you try the cbd non thc patch lm Corinne Black of Hereford Stree Brighton. England. BN2 1JT. Will endeavor to answer all replies ❤❤❤❤❤❤❤
Hereford Street 😂
@@matthunter2413 I have just finished my first bottlle of marijuana (CBD) and got to the stage where I was taking 0 .8 ml in the morning and 0 .8 ml at night. I'm sad to say after initially thinking I had found a genuine remedy I have pretty much been experiencing the same pattern of pain with good days in between that I have always had.
My doctor suggests I try one more 30ml bottle and start at 0.8 ml morning and night rather than build up to it and see what happens.
At this stage I am fairly pessimistic. Thanks for your help.
your closing statement of "choosing to hang out" was so sweet! i was watching your video while i drew because i get lonely/bored when im making art by myself. ive been watching your videos for the last week and have found them so interesting and educational. thanks for everything you do!
Nothing like waking up to the feeling of Planters Facia or an arch cramp, when there is no foot there or in my case both. It's unreal how very painful Phantom Pains can be. Jo you Rock!
I have been an AK amputee for 3 1/2 years. You are spot on with "what" phantom pain is and how it effects us.
Our brain does NOT rely on eyesight and seeing that we are missing a limb. Hands, feet, legs and arms disappear from our "field of vision" all the time, like when sitting at a table or desk. Therefore, the brain doesn't rely on eyesight.
This is how I deal with my phantom pain. I "talk to my brain" NOT my pain or missing leg. I made a "deal" with my brain. "We" agreed to stop the pain and itching "signals" and replace them with pressure and tingling "signals".
You have probably heard a song called "My own worst enemy".
After I started talking to my brain, we have become best friends, instead.
I believe that phantom pain may be triggered later in the day when we become "mentally tired".
One of the saddest things about my phantom pain and my amputation in general, was that there was NO ONE who could talk to me about it. You see, a "physician" deals only with the physical body that remains. I have yet to find a single doctor who would even listen to me about phantom pain. In our present culture with the "pain pill epidemic", people just assume we are trying to get high. A doctor could even get in trouble for writing a prescription for phantom pain. Pain pills didn't work for me either.
What did work, came out of the Holy Bible. Jesus said " Love your neighbor as thyself (yourself in modern English)".
And, "speak to your "mountain ". I hope you don't mind me going there, but I too, had a "falling out" with the church, but not with God or Jesus.
The best advice I can give any amputee is learn to communicate with your brain and stop being your own worst enemy.
I talk out loud to my brain. It is looking for a way to replace the "lost data" that was once coming from my leg. By talking out loud, I am sending new data to my brain thru my hearing.
Yes, people will call you crazy for talking to yourself. THAT'S THEIR PROBLEM, NOT YOURS!
Like you I talk to my phantom pains and tell them that they are fake and they go away, I am a BTK amputee as of September 12,2021 and getting my prosthetic training leg today February 2,2022 and my permanent one next week
Thank you for your interesting story. Talking out loud to apparently no one in particular does not prove you are crazy. Why do people assume that?
@@proudcynophile1901 telling anyone that I have pain even though I don't have any physical place for it, I think, is so far from "normal", may cause a glitch for them.
So, which is crazier of the two?
@@travisfarmer4151 they should just listen with an open mind.
Hi Jo, I am a BTK right leg coming up 2 years now. This video is so accurate. I experience 95% of what you describe. The mirror therapy not so much. I did it in rehab for 5 weeks solid and no difference. As far as how long does phantom pain last, I've been told from a few months to a couple of decades !!! It's just part of life now.
This is the channel I didn't expect to stumble upon, have nothing in my life that is even remotely related to the subject, yet I'm here and it's really cool how you describe all the challenges and issues that I'd never imagine before. And also didn't expect that there are so many aspects how it affects your or other amputees lives. Great respect!
I have chronic nerve pain and sometimes when it’s so bad, I wish I could just cut off the body part. Not really, but that’s what my brain wants in that moment of agony. Your story is really helping me put my situation into perspective.
I have a friend who’s an amputee. He said he can feel his toes still and can feel pain sometimes. He also said his prosthetic sometimes pushes up against his leg and can hurt when putting pressure on it.
I found out about you from yt shorts and I instantly loved your personality. I’ve never even heard of the term amputee or phantom pain before and now I’m trying to learn more about it. Just thinking about that is so crazy, you’re a really strong person and thank you for sharing your stories!
I suffered significant damage in the Army in the 70s. The pain slowly subsided over the years. 8 months after I retired(10 years ago) I woke up and realized that I wasn't in pain. That lasted a few hours. Look forward to it getting better. For pain relief, try self hypnosis. When done right, you can escape the pain for hours. Good Luck, Rick
A weird question I get asked sometimes is “do you feel your feet if you’re not in a pain episode?” And people find it weird if I ask them if they feel their foot if they didn’t hurt it in some way.
Hello. I experience phantom pain every single day. It SUCKSSSSSSSSS! I hate it. For me it started in 1989, 32 years later and still hurting. Like you i have tried many different things to help with varying degrees of benefit. Ultimately the benefit has been minimal. Thank you for making this video. It is tremendously helpful. It validates what i experience. While i know others experience it, there really is no one else that understands. A lot of time feeling like a freak because of spasms that make me flinch or grab my nub and massage. Thank you so very much!!!!
Praying that it will decrease. N you will experience healing that comes from God.
I am one of the new viewers coming from the shorts, and I am so fascinated by your story that I can’t stop watching. I would never want to see anyone go through this but you make the best of it and I just really enjoy that
7:00 Not sure this will work for phantom pain, but when my stump cramps, squeezing it with my hands really really hard helps make the cramp stop. The trick is not letting go too soon.
My friend accidentally broke my pinky toe once and I still feel the pain sometimes. Never had it amputated but sometimes when I hit it on something very lightly the pain is so excruciating that it feels like I broke it again, sometimes it even goes numb. It’s never happened to my other pinky toe (the extreme pain/numbing sensations) so it’s just really interesting to me how major injuries without amputation can still lead to phantom pain/sensations.
Great video and very informational and it helps me understand the world of amputees a whole lot better!
Hi jo! I recently found your channel and I love your positive energy!! You seem like a really chill, funny person that would be cool to be around, so thank you for sharing your personality with us along with all of the interesting (and useful) information on what life is like for an amputee ❤️
I have a question regarding phantom limb sensation! Do you feel your phantom foot as it was right before the amputation (horseback riding injury and all) or do you feel it as a healthy/uninjured foot with full range of motion? This is so fascinating! Thank you for sharing!
That’s a good question!! I’m wondering about that too
While I can't answer for her, I can answer for myself. Mine was osteomyelitis that ate my Achilles tendon and had the option to either lose it or go through a series of surgeries that might save it, but was likelier to end up gone anyway, so I chose the option that didn't exactly have an open ended recovery date. Not actually feeling anything due to diabetic neuropathy didn't exactly make the decision harder.
Now that the how is out of the way, I do feel significant pain occasionally where the back of my ankle would be. Mainly when trying to sleep and I forgot my gabapentin/Neurontin. More often it's just stabbing/electric pain in the big toe from the neuropathy which makes my leg involuntarily straighten in response. Luckily prescriptions have worked for me, but sometimes need an out of cycle dose.
P.S. Nurses look at you funny when you say no to painkillers with an open gaping wound because it doesn't hurt.
Also a baloney (below knee) amputee. Phantom p ain hasn't been too bad, but the feeling my foot and t oes are still there is freaky. I had my amputation in July of 2023, so it has only been 5 months. The strangest phantom sensations so far have been the day I forgot my leg was missing, stood up and fell over and a day I was outside in the cold for 5 minutes. My remaining leg was not cold, my body wasn't cold, but the missing calf and foot were. Thanks for sharing Jo.
Im wondering if having your prosthetic on and rubbing the fake foot/leg helps to stop the pain since you are actually physically touching something in the area where your foot/leg would be?
I am a nurse who works with patients with amputations regularly and my most recent patient just had an AKA and was not complaining of pain to her stump but to her groin and inner thigh muscle... is this something you have experienced or have an explanation to? I was just curious if that is related to phantom pain since I'd never had a patient with such severe pain but not to the surgical site. Thanks!
Fellow nurse here and I was wondering about scratching the prosthetic when the phantom limb itches! Maybe the tactile sensation of not touching skin would cancel out any possible relief though?
I've heard a bit about Phantom pain and people being able to feel individual parts of their missing part while in pain in random threads on the internet.
However, I've never thought that you could always have that connection in your head and feel the individual parts even when not in pain. Very insightful. Great video! :D
Yaaaaaaayyyy! My question made it into the video. I feel oddly accomplished. Thank you Jo
Just had my surgery last Tuesday. I can actually relate to everything you’ve spoke about.
i wish you well
@@pompurin9431 thank you very much.
I dated a double amputee and he definitely had phantom pain and itching for sure. I really appreciate you bringing your normal to help us understand what it is like for you!! Bless you stay sweet!!
I'm not really sure if this has been suggested to you already, but there are a lot of studies going on about psychedelics and how they can eliminate phantom pain. There's been cases where amputees took MDMA (under supervision with a therapist) and eliminated phantom pain in 6 weeks. Being in Colorado, I don't think that you would have any trouble finding a resource that can help! I really really encourage you to look into it, because the science behind it is pretty solid
I’ve had phantom pain for 4 years now and it’s gotten better but it has its moments my phantom pain is a tingling sensation
I had a portion of my index finger amputated a number of years back and to this day it is still significantly colder then the rest of my hand no matter what I am feeling elsewhere
I lost my index finger on my left hand. Being a guitarist it kind've put a damper on my studio work, but honestly it's fun again. I had an itch right behind the fingernail, and no amount of nub rubbing or anything else would stop it. Finally, in a bit of being silly, I scratched the air where it would be, and it STOPPED! It's done that several times. Sometimes I'll feel like someone is holding my finger folded to my palm tightly and I have to actually look at my hand to get it to go away
I am a bka, I had my first amputation in June of this year. I woke up from surgery and the phantom pain was there and in full force right away. Mine was more like my toes were being contorted and shoved into a toddlers shoe. It has continued pretty consistently for the last 6 months. Toe and foot contortions are really common. I, like you, have most of my pain in the evening and the super crazy thing is I have found that rolling or shaking my stump bank and forth while extended really helps. I am so glad that there are nerve pain meds they are helpful for me. However, I am scheduled for a second amputation and TMR on the same leg on the 2nd of December. I have watched you since I decided to amputate and you have been a wealth of knowledge and you have helped me more than you can ever know. Thank you so much!
Hi, Jo! Like you said on another of your videos, everyone's amputation experience is different, but don't give up on mirror therapy. As you probably already know I'm only 5 months post amputation and I started getting phantom limb "sensations" while I was still at the hospital. It's only when I got home that the pain actually kicked in. I have a surgeon friend who worked at Walter Reed Hospital who clued me into the mirror therapy. It has worked! Once in a while I feel my "toes" cramping up and I immediately drag out the old mirror and do 10-15 minutes of "exercises". Then, it goes away, try it again, it may ameliorate the recurrence of PLP.
Jo, I remember you saying something about “phantom itching,” right? If so, I have an observation/question: have you tried ice for itching? When I was an ICU nurse, lots of patients were tortured by itching, and it wasn’t helped by any anti-itch medicine. I discovered that gently stroking the area with an ice cube or ice water soaked wash cloth stopped the itching almost immediately. Also, this was something that family could learn to do, and this helped them feel not so useless.
So I have no idea where you’d apply the ice, but I hope you’ll try it and let me know what you think. Thank-you!
I saw another one of your videos a while ago (the one you showed here in reference to the worst phantom pain you've ever felt), but couldn't find you again when I wanted to share something with you. I know many people talk about mirror therapy or electrical/tens therapy, but many amputees I've heard about say they aren't very effective. I am curious why no one talks about EMDR therapy though. It was developed for PTSD and is generally used for people dealing with traumatic events, but there has been research on its use for phantom limb pain and other psychosomatic symptoms. The link between our brains and the rest of our body is pretty awe-inspiring. I was skeptical of the therapy in dealing with my own CPTSD, but it is no joke. Nothing else I've ever tried has helped, until I found this. Hope you find relief sooner rather than later, whatever methods you decide to try.
E M D R is a very effective treatment for various severe conditions. It works in a similar way to Hypnotherapy. It harnesses the brains ability to reduce pain and stress.
You can learn to use this yourself.
Dr David Whitaker
I've had hip surgery at the end of 2018 and even though I still have all my organic parts, I still get nerve pain on the surgery scar. At the beginning it was intense itching, now it evolved into an occationnal burning sensation on the scar, as if someone was sticking a hot iron on my hip, or if I was standing against a radiator for too long. Sometimes it lasts a few minutes, other times it lasts hours. Bodies are so strange!
Jo, you should try rubbing horse ligament on your leg. Remember horse trainers use it on the ankles and legs of million dollar throughbred horses. That helps them to keep the horses muscles and ligaments in top shape. I have used it for years, and believe me. It works wonders for your aches and pains. Buy some and try it for your phantom pain flare-ups. It can't hurt. You might want to get hold of a large animal vet to find out where you can get it in your area.
Hey Jo! Love your channel! Could you possibly make a video about tips for before a surgery, how to stay calm, etc? I think a lot of people (and me) would find this really helpful! Thanks!
That is a fantastic idea for a video, Emma! Thank you for that - I'm adding that to my list of ideas for the future!!
@@FootlessJo Of course!
Hi Jo. Thank you so much for this video. I lost my left leg below the knee about three weeks ago and am still in hospital, so I've not had chance to meet other amputees yet, so hearing about your experiences was really useful to me. I know everyone experiences things differently, but I'm amazed by how much of what you have experienced has been the same for me. like you, I experienced the sensation of my leg still being there from the very moment I opened my eyes and I even had to look to confirm my leg had actually gone. Now I am beginning to get pain which I would describe as pins and needles on a very specific part of my phantom foot punctuated with a "cattle prod" feeling every 30 seconds or so. For me, though, it is not unlike the neuropathy pains I experienced before my surgery. I can also wriggle my toes and can feel it if someone puts something down on my bed where my leg used to be, albeit just for a second. In spite of the pain, I have to admit that the whole thing is fascinating. Makes you wonder how much of the physical pain we feel in life is down to an injury and how much it is generated by the brain. Thanks again for the videos...... they are really helping me find my way.
My goodness I had no idea, I’d heard the words ‘phantom pain’ but I’d never any idea how bad it was. You are so good at describing all the realities of living with this. Thank you.
I also left my lower right leg on the operating table. Thank you for bringing this topic up for discussion. I recognize myself in many of your experiences. I wish you a lot of "joie de vivre".
your strength make me realize. life must go on. not 4 the end. but just beginning.. thanks 🥰
The fact that your phantom pain increases at the end of the day when you’re relaxing combined with the fact that stimulating the end of your leg can sometimes help alleviate the pain makes me suspect that the pain is related to a LACK of stimulation in the area. The brain might get confused because it’s not getting any input from that area and start firing off signals to try to compensate. But when you’re walking around doing stuff during the day, it helps stave off those random firings.
Obviously this isn’t a perfect explanation because you get phantom pain while you’re moving around, too, and I don’t know about the tendencies and triggers for other amputees. But this is just where my mind went with how you’ve described it.
I just discovered your channel a few hours ago and I’m loving it! I love people who give a candid, inside look at some reality most people are too afraid to ask about. It’s really cool how you’re spreading this insight.
This is one of the videos i watched with my son, during the experiment (why youtube your videos restricted) and i just want to comment after, because he was totally surprised, that you can still feel pain, even if the foot is gone, he has troubles to understand it, we talked a lot about this pains, he even asked if your decision was the right one, because you have pains before, then you cut, but now you have still pain, as i told, he is 8 years old and curious about anything. Thank you for the explanation. To be honest, until i watched your video, i know about the phenomenon phantom pain, BUT what i don't know was, how serious this pain really is, i have no idea that you can suffer so much from this, so i learned many things (like my son), so thank you again :)
I lost my leg when I was 3 years old 54 years ago and I still get phantom pain sometimes not very often but if I meet another amputee that is having a lot of phantom pain then somehow I start to feel it when they get it. It's weird when that happens I am not usually with them but I ask them at a certain time if they were having phantom pain and they always say yes. So the phantom pain has got less over the years but I still do get it sometimes.
I Love and Appreciate your Honesty of your Journey Suffering with this. Great Questions from everyone. My Brother-in-law, who just passed away, lost his entire leg up to his hip, a week after having a Hip Replacement Surgery, and I know he suffered for years with his phantom pain as well. It's such a crazy thing, and so painful at times. Thank you!
I am so sorry that you have to experience that pain. My heart broke when I saw you reaction to your pain 💔
Great videos.
U asked for possible phantom pain solutions in a video i saw.
1. Farablock prosthetic sock?
2. Relax night care sock?
3. Compression sock?
4. Ace wrap compression?
5. Gel liner compression?
6. Hot cold therapy?
7. Nerve block?
8. Mirror therapy?
Good day!
Sometimes I experience so much pain I irrationally ache to amputate certain limbs... but then I recall stories of phantom pain and it helps me snap out of it.
Listening to this is very validating somehow. Thank you for sharing.
Anything messing with your nerves is frightening. I never met her, but my great-grandmother had a leg amputation. I remember my mother talking about how she (her grandmother) would still experience a sensation of pain. I was confused, but the way you've explained it makes more sense to me. Thanks!
What's really fascinating is that phantom pain is positively associated with remapping of your somatosensory and motor cortex in your brain. It doesn't really help to know that when the pain sucks, but it's still pretty incredible that your brain can do that.
I have a symes amputation (just above the ankle) of my left foot. The surgery was when I was 8 years old, and I do remember having severe phantom pains for a long time. Especially post-op, the sensation of the foot being SO COLD was awful and my mom would get so frustrated that I begged her to just keep piling blankets on the nothing that existed below my stump. I no longer experience any phantom sensations, but I do still reflexively say "ow" if I stub my fake toe on a table leg or something. I wonder if the persistence of phantom pains is at all related to how old you are at the time of amputation? I can't point to a time I know it went away, but I think I was not having them at all by high school.
I came across your short about going through airport security with your prosthetic. I knew that I had to subscribe! This is strange but I just cried. It’s nice to know that other people have experienced what I am experiencing. My right leg was amputated about 2 1/2 years ago and I am still feeling my phantom limb. I can feel my entire limb, foot, and toes. I also sometimes feel the pain I had with them before my leg was amputated. I was starting to walk again and I had a fall while walking with my prosthetic. I am trying to get back to where I was and it is a difficult journey. I’m still not there but thank you so much for giving me hope. 😊
Phantom sensation honestly seems like the most terrifying side effect in my personal view. I grew up with pretty bad "symmetry compulsion" (thats what I call it, assuming its just a manifestation of OCD), where if I itched or rubbed or poked or whatever one side of my body, I would feel almost like an (overly strong) itch to do it on the other side too. The thought of having those sensations and not being able to address them immediately sounds truly horrible
I'm a bilateral below the knee. Blessed to have my knees. But I saw u do a video when u were having a just horrible pain. U say that it doesn't stop u. They called mine chronic phantom pain syndrome. Sometimes it goes on for days and notes before it'll give.Ive done all I can do. It's been 22 yrs. And I was told it's happened for others to go away and I just keep waiting pretending it'll happen. I goes crazy shaking and jerking hits nerves with my fingers trying to find the nerves to try pressure. The tears use to take over after a day. But its what I was delt. I fell off my roof. It's been a long 22 yrs. I've also become a spinal cord injury patient by shattering my t10. It's been a long road. Got out of back brace in 2020. Lost 115lbs and came off all kinds of meds. I started following u a couple months back. And ur like me. U don't let it stop u. I will fake a laugh before I she'd a tear in front of someone. Keep it up. Someday I need that
I work as a nurse in endocrinology so I meet a lot of patients with diabetic foot ulcers, and amputations are common. If you have untreated diabetes you will lose sensation in your feet and some of my patients have no sensation at all. They can have a wound straight to the bone and they will not feel any pain during wound cleaning or walking. I wonder how phantom pain would affect someone who've lost their sensation that way. Because of how our healthcare system works I only get to follow up on patients days after amputation, and during that time it's mostly surgical pain and not phantom pain. Unless they come back with a complication or a new wound, I never know what happens once they go back home, so I've always wondered about phantom pain and how much it affects their lives afterwards. It's a very interesting topic and thank you for sharing :)
It's so trippy I get the phantom sensations of my foot being there but look down and nope still hasn't grown back.
Not an amputee here but I had lateral ligament reconstruction on my ankle a few years ago. One of the possible side effects is nerve damage. I was warned about this and was told sometimes it resolves itself but sometimes it doesn't due to how the body heals and scar tissue. After surgery, I didn't have full sensation of the lateral side of my foot, from just below my incision site, down the top of my foot, to my last three toes. This, I figured, was a fair trade for an ankle that worked and held properly and wasn't grinding my cartilage away by constantly slipping out of joint. Over time, the numb patch decreased until it was just the tops of my last two toes and a part of the top of my foot. Then, one day I felt a needle of fire slice up from between my last two toes, over the top of my foot, up my ankle, up my tibia, all the way to my knee. I almost fell on the floor. It was so sharp and shocking, I didn't know what it was, I thought I had dropped something on my foot or that something had gone wrong with my surgery that, by that point, was almost 10 months ago. It was so weird and intense, it was without cause or trigger, it lasted for however long it lasted and nothing I did could ease or stop it. I just had to wait. That first day was long. The weeks after, interspersed with random jolts. Sometimes, that numb past itched like crazy and I had to start wrapping my foot at night so I wouldn't wake up scratching it raw. This went on for a couple months. Then, at some point, it just stopped. The pain didn't last as long and came farther and farther apart until they just stopped altogether and I had sensation of my toes again. But I never got used to it in that time. It drove me nuts.
I am not an amputee, but at some moments I know exactly what you are talking about. I have some nerve damage from constant subluxations. The worst pain I've ever dealt with was trigeminal nerve pain from inflamed tooth - I was crying, biting myself, wanted to tear out all my hair and bash my head untill unconscious...it was simply bad. Even slight touch on my face could trigger it at any moment. I am glad this pain lasted for just few months and longest attack was about three hours. I can't imagine what it is for people who live with this kind of pain their entire lives.
For my normal almost every day nerve pain I am currently trying TENS unit and I hope it will help. I am lucky as stoping any movement in that joint usually helps to stop the pain. Muscle nerve pain on the other hand is so much similar to what you are describing. Just zaps of pain. Sometimes dull, sometimes sharp. It can last for seconds or hours and it usually makes me stop doing anything, as it is super hard to focus.
I'm a bk on the right as well. My surgery was in 2003 & my phantom pain has not eased off. I had cancer in my foot and I can still feel the tumor. And as you experienced my pain didn't start right after surgery either. About 5 to 6 days after surgery I was sitting in a recliner at the rehab hospital and all of a sudden WHAM! It hit. And I too was fascinated by it & I still think it's a crazy thing I just wish I didn't "feel" it so much. Not only do I feel pain, but I also have this odd sensation that feels like little bugs are crawling up & down my leg. And I feel that almost all the time.
I suffer from chronic pain in my legs and feet. When you talked about the pain between your big toe and second toe it really hit home. I've described it as a burning sensation or someone giving me a shot between my toes. I have had some luck with Lyrica and a specific brand of CBD. Now I know you don't have your foot but if you were to apply this CBD topically it might work on those nerves. This is the only thing that brings me back to being a human in the evenings. Why in the evenings? All I know is the more I do the more I hurt so yeah, after 6PM is right. Anyway the stuff I use needs a doctor's script. I got it from my chiropractor. The brand is CBD Clinic, and get the strongest. Level 5. I've tried the strongest from the local dispensary and it might equal level 3 or 4 but why not get the one that works. Its like 90 bucks but you don't need a lot. If I use just a bit of this cream between my toes I'm back to normal in 10 minutes. Hope that helps.
Rock On Sister!
U sure you don't have a slipped disc or cauda equina
@@reddaB i had a microdiskectomy thinking that was causing pressure on a nerve. When I woke up from surgery I knew that wasn't the problem. I've had MRI's and cat scans, they don't see anything. I'm what they call idiopathic.
I have a unique CP disorder and when it was diagnosed I had to go through 8 sessions at a pain management clinic to learn all about pain and pain management. Did you ever have specific education or therapy specifically for your phantom pain? Also, does your phantom pain ever cause pain anywhere else? I know my nerve pain flare usually cause other parts of my body to flare and often lead to migraines as well.
Hi Jo, i’ve been a paraplegic for almost 27 years and this is the first thing I’ve seen regarding phantom pain. It is annoying, very painful and in the evenings never ending. And I personally have my heel feel like somebody is driving some type of a stick through it. But most often it feels like my third and fourth toes always on my right foot are being crushed with a huge wrench and or a clamp. The pain goes from about a constant and annoying 1 up to a 10 or 11 on the scale for about 15/22 seconds and then goes back down to one or two. This goes on for 4 to 5 nights per week when I’m laying down in bed. Of course as I am writing this at 4:20 in the afternoon I all of a sudden get a big one that lasted about 10 seconds. I guess I’m grateful it was just 10 seconds. The only thing I have found it helps somewhat is keeping gabapentin in my system. The other thing is grabbing my leg and shaking and bouncing it on the bed. I don’t feel it but I see it and maybe that has a little bit of pain relief cause. And regarding what you said about banging your foot or what in your case is perceived to be a foot still there, I still, when I bang my foot into a wall or a doorway or a cupboard, crazily or not I will still yell out “ouch, dang it“ when I can’t feel anything technically but yet I do in my head or at least know that it would hurt like a son of a gun. It’s hard to explain to somebody who doesn’t go through it. You did a beautiful job. I’ll be going through your videos are on UA-cam this evening getting more familiar with you and the nerve issue. I know it’s a little help me but it might help me explain to others. And that’s kind of the point of all this. Happy new year, ma’am.
That's brutal, I hope you get relief one day.
I was amputated when I was 10. My amputation situation is weird and I’ve never heard of being amputated the way I was. Both of my feet were or all my toes (not like half of my feet) and fingertips were amputated due to necrosis and sepsis. I also my horrible phantom pain. I can feel my and I can feel the numbs and move my “toes.” The pain is like pins and needles turned up. Because I don’t have prosthesis I do have cold intolerance so can’t be outside for a long time or else my toes or fingers will turn blue, be very cold, and or the phantom pain hurt. Also because I am short and when my feet are off the ground the phantom pain hurts a lot worse so I have to move or massage it. Thank you @jo for the videos and for being a campion who understands
What about an ice pack? When you put an ice pack on any injury it actually works because your nerves send fewer or sometimes stop sending ‘this is painful’ messages and starts sending ‘this is cold!’ messages.
I hope your pain is getting better x
When my mother had cancer she would withdraw and not respond. There was one situation when she woke and had a conversation. I have had extreme pain that made me almost blind. I was told that people with extreme pain often withdraw, as it is so overwhelming. I can certainly understand why a person would not want anyone near by. Hope you have less pain as time goes by.
I'd heard of phantom pain before, but it never occurred to me that this would always be an issue for an amputee. I'm so sorry you're dealing with it although I find your positive attitude remarkable. BTW, I'm not sure how I stumbled upon your channel, but now I'm hooked and have subscribed.
Last summer while on vacation, I was wearing thong sandals and walking for miles one day. I gave myself a serious blister on the bottom of my right foot. I compounded the injury by stepping on a sharp object in a hot tub the next evening and completely ripped the blister off. The infection behind the toes was immediate and ugly yet antibiotics seemed to do the trick for six weeks straight. My foot looked great. Two weeks after that? Sepsis and then surgery removing toes #2 and #3 and their "knuckles" eventually followed by 20 days in a different hospital getting a super strong IV med to rid my body of the infection (3 4-hour IVs = 12 hours per day).
Before I came home, I had intense tingling on the sole of my right foot. It didn't hurt exactly yet it didn't feel good either. After returning home, I began having very intense pain in the space where the two toes had been. Wow, I never expected that! It only happened a few times and now I'm assuming it may happen again if your video is anything to go by. Forewarned is forearmed. Wishing you the best, Jo.
Hey Jo. Finally, after 14 months of hobbling on the iwalk 2.0 I have started wearing my BK right prosthetic. I have always felt my lower leg and foot even when wearing the crutch. When I lay my legs put next to one another I can reach out and touch where my foot should be. Now, what's weird, I touch about 2 inches higher than normal. My theory is during surgery the doctor stretches the main nerve (ulna, I believe) and it retracted that far up into my leg. I feel like I m have daggers in my foot and leg quite often. I also lost the big toe on my left foot and that constantly hurts. As for the right leg, when it's not stabbing pain, it helps when I wear my leg. When driving, I can actually feel if I bump the brake pedal and need to pull up higher. Walking is about like walking normally. It's overall sucky to not have the leg. And I'm doing hyperbaric therapy for bone infection that could end up with me losing more of my leg, but so far I haven't been totally incapacitated by no leg and the pain. I do take scads and scads of gabapentin.
Does gabapentin help you? It helps my brother with his nerve pain but it doesn't help me with mine, but I was prescribed it again, by my psych for my anxiety oddly enough. Gabapentin has many uses!
I feel your pain i am a right leg below the knee Amputee for 17 yrs now just last week i started having phantom pain in my Stump about a minute apart sharp
pains for three days i tried the mirror trick rubbing end of my stump' and even pain meds nothing works i have been on this rodeo many times i just ride it out
and Grit my teeth i have even had pain in my left leg thank god this does not happen that often for me any way have a Blessed Day
😇
I will say you being a ampute in itself doesn’t make you strong but being able to adjust so well to this huge change in your life does make you strong. I’ve been a long time fan of yours and I’ve seen you adjust to a new life and it hasn’t been easy and that’s just from what I see. I can’t imagine how tough it’s been while taking care of dogos and running a channel!!!
I am a 58 year old Bilateral Amputee as of 12/13/2021 due to Diabetic complications, and was a life saving procedure. The Phantom pains drive me nuts to the point where I consider causing other pain to myself to distract what is going on. I can't itch what's not there, even on another leg. Electrical Pains make me almost want to jump out of my wheel chair. No amount of shaking my limbs, massaging, pounding, or whatever seems to help. I also have to be careful how I try to stretch my stumps because I get muscle cramps and Charley Horses. I often catch myself swinging my legs and trying to cross them. Sleep is almost non existent because of the phantoms, even with a pillow between the thighs. I can feel every part of the missing limbs as they were before they were removed. It's enough to make a grown man cry!!!! For those who have not lost a limb and you are wondering, It's different than not being born without something. To those people, that is their normal function and their nerve wiring. At least that is what I am told by a friend who was born with no legs.
Much love and support to you, jo. Continue on your road on getting the giant gold play button
Aw I really appreciate that!!
This is such a great chanel! My Father is an above the knee amputee, and this helps me understand him a bit better. And its nice to see.
the phantom pain short was the first video of yours i saw. Thank you for answering these questions! My family member is a double below the knee amputee and isn't willing to talk about it. This has really helped me understand
Is it ever possible for someone to “cure” phantom pain?
Edit: I watched the whole video and had my question answered.
Love your channel!
Aw thank you so much!!
They chopped my leg off 23 years ago and I still get phantom pain.
Also with me it tends to act up whenever someone mentions phantom pain or if I'm somehow reminded of it, though those times it's usually more uncomfortable than painful. Like I feel like the leg is actually there but sort of tingly and stiff and I can actually try to move the nonexistent toes if I really focus. One time as a kid I even remember moving the phantom big toe on top of the toe next to it and getting it stuck there for hours until the phantom tingling went away.
But I also have NF-1 so some of the pain might just be symptoms of that since random nerve pain is a symptom of NF-1 even without amputation.
I am an AKA, traumatic since 2011. Every single thing ýou covered is spot on!!!!!! Thank you!
You are on point about everything! At times you think you are the only one going through these things but I was nodding along through your video. I had my RBKA in May 2010 and didn't experience much phantom pain. Oddly enough, after my LBKA in June 2019 I started experiencing more phantom pain on my right. It's not crippling for me. More of an annoyance. Usually rubbing behind my knee helps. The itching though! Those are the most annoying! But I keep a positive attitude and continue on. Thanks!
Finally the vid I was waiting for! I'm not an amputee, but I have small fiber neuropathy and the pain I experience is super similar to what you're describing. For me though, bright lights and dry heat can trigger the nerve pain (bizarre, I know) in addition to the spontaneous zaps/shocks/stabs when just sitting (i get 'em in my hands, feet, and face). Quite the batch of incredible questions that were posed in this vid though, and thank you for answering them! Looking forward to part 2!
The phantom feeling of my foot is strange. Sometimes it feels like my toes are crossed and I have to trick my brain into uncrossing them. The phantom pain and Charlie horse feelings are what I have the most trouble with. Gabapentin is my friend.
@@jeannie2548 the Gabapentin does help. The worst is when it feels like someone hooked up a live electric wire to your stump. I take 850 mg of Gabapentin but I also have to take pain meds but thats also because of other damage from the same car accident. It socks right now because I fell in the bathroom earlier today. So I'm kinda sore. Have a great Thanksgiving.
So glad I found your channel. I lost my leg in January and it's still so new.
@@jeannie2548 Got a week on you. Mine was Jan 21 according to the hospital records. Was in coma so had no notice. Took against my wishes. Put this stuff in writing people!! Good luck with your recovery. :)
@@jeannie2548 I had a sore on my foot and visiting nurse said to call ambulance. I remember walking out of my house and sitting on stretcher in my driveway. Woke up about a month later in a different city with no leg. Alone with no discussion. That was my third coma. My friends and family all knew I said no amputations. I get it, saving the patient is normally #1. But now, is it worth it? Not really. Can't go home and my sister lives 3500 miles away. Limbo hell. :(
As someone who is fascinated with artificial intelligence, neurology, transhumanism, and the future advances in medical technology, your description of your experience has given me some insights.
Your description of phantom pain is helpful in conceptualizing how the signals between neurons function.
Could it be that phantom pain is the effect of neurons constantly pinging their targets, including non-existing ones?
From what you describe of your experience, it seems that the expected signal is either lost, or redirected chaotically in an infinite loop.
It appears that the only cure to phantom pain is to either find a way to update the brain's inventory record, or to restore the leg with an advanced technology such as nanomachines.
I had my surgery on 2/4/2021. I have had phantom pain maybe 5-6 times since then.
I do have phantom sensation all the time. I can feel my toes wiggle, flex my ankle, etc. just rarely pain.
I’ve tried many many time to do the mirror therapy. Did nothing for me. What I did have was the bones would literally punch the muscle and nerve and cause a serious Charlie Horse. So I had a revision 8/4/2021 where they secured the bones together so they would not pinch anything again. No issues since.
My biggest issue is my health insurance denying me getting a permanent leg. I have the temporary leg that you learn to walk on and use in PT but it’s way too big. Like I put on 20 layers and put the leg on and it was still too big. So we started the process for my permanent leg and the insurance company says the temporary leg should last like 20 years. When it won’t last one year if I could wear it every day. So now I’m having to fight my insurance for my leg so I can walk again.
Sorry to hear this.....
My BC / BS allows 1 leg every 3 years.....
Got my new custom liner today. I had to use over 11mms of socks to have it fit comfortably enough to walk .....was measured again for a new socket...
Yeppers had to fight with the insurance company on this....They just couldn't or wouldn't understand that......
It total BS what they put us through
Just subscribed!
My husband is scheduled for his amputation on 2/24. Just recently your videos started popping up on the home list of my UA-cam account.🤔 I’m trying to prepare myself for our new life.
On the topic of phantom pain, I’m already concerned for him. He’s battled neuropathy for years and it would make him insane! Your description of phantom pain sounds similar and it scares me to think he’ll be suffering again…it had stopped when the nerves pretty much went dead.
The neuropathy caused a disease called Charcot Foot, which after two reconstructions, he’s now dealing with a bone infection requiring a PICC line. The foot has run out of time. To get to the best bone and tissue for healing, he’s having the amputation below the knee.
To finally get to my question…if he’s had no significant sensation in the foot for a while now, have you heard of any cases where that would reduce phantom pain? He’s also on the maximum dose of Lyrica and will probably stay on it for the neuropathy in the remaining foot and hands. Does that have any effect on phantom pain?
Thanks for sharing your experience and insight. I look forward to checking out your other videos over the next few weeks as I educate myself for the future.
As an abled, I really like to learn through your videos, thank you so much for them! Also it seems to me that you're much more confident in showing your stump (is stump an ok word?), and I'm so happy for you
As I an watching this I am feeling phantom pain because my existing foot is cold. This is what always triggers my phantom pain I will need to get in the shower soon to get warmed up I'll do some work with mirror therapy for about 15 min. this helps quit A bit for me.
when I deal with acute pain, I discovered, that doing sport really helps. Obvouisly in a way, that does not stress the thing that hurts. The aim is to get really exhausted until your muscles start hurting. In that moment endorfines kick in which work way better for me than pain medication. I am curious, if this works for Phantom pain.
Wow! Those questions were so good. I would never have thought to ask some of them. Very interesting! Also, have you heard of TSR? It's related to TMR but not the same thing--interested to know if they had done both or just the TMR.
Actually, I haven't heard of TSR - definitely going to look into that now!! And I love the questions people asked - some I never would have thought to answer!
@@FootlessJo it's basically the other direction. TMR (targeted muscle reinnervation) is a procedure for the nerves that carried information from your brain (or spine) to your lower leg (ex. the nerves that allowed your brain to tell your muscles in your foot and ankle to move--your motor nerves) but TSR (targeted sensory reinnervation) is for your nerves that carried information from your lower leg back to your brain or spine (the nerves that allowed your foot to tell your brain what sensations it was feeling for example that you just stepped on a surface and more specifically what that surface felt like on your foot, like the temperature and texture, etc.--your sensory nerves). The brain and the limb communicate in both directions but TMR is reinnervation of nerves signaling from brain (or spine) to leg and TSR is reinnervation of nerves signaling from leg to brain (or spine).
I’m obsessed with this topic lately. This is so bizarre and fascinating.
I’m curious if this phenomenon is limited only to amputees or if people who were born without a limb or a major deformity also experience this.
Also, if you’re having a phantom pain and you are wearing a prosthetic, does it help to treat the prosthetic as if it was your actual leg? Like if you have a foot cramp and you massage your prosthetic foot, does that trick your brain into relieving the pain?
I really appreciate what you're doing with your online voice, and the conversations, awareness and acceptance that you are fostering. You've taken lemons and made some wonderful lemonade, and blessed a lot of people. Plus you are entertaining, upbeat and inspiring. Two thumbs and one big toe up!
I've just met this channel and I already love
Aww thank you!!!