 As I see that my leg very clearly ends right there, I can still feel my toes, I could wiggle my toes. I have never not felt my foot still being there, even as I've gone through surgeries and used a prosthetic leg. Hello there, my beautiful, lovely internet friends. Welcome back to my channel. I am full of this show, I'm missing a foot. I can't show you right now because my puppy's in my lap and I'm not gonna move him. But I wanted to tell you everything today that you've ever wondered about phantom pain and sensation. This is something that fascinated me long before I became an amputee and I always wondered what it'd be like to actually feel that, actually go through that. So we're going to dive into that today and answer a lot of the questions that you guys asked over in my community tab. Just like the concept of phantom pain and sensation is so bizarre, because if you think about it on the surface, you remove a body part, you remove the sensation, you know, the nerve is gone, hello again, Sully. Why would you still feel anything? So it's a crazy thing and I really enjoy talking about it in theory, but I really don't like actually experiencing it because I deal with phantom pain every single day and I've not found effective ways of dealing with it and I'll talk about that a little bit later in this video. But first a very quick word from our sponsor and then we're gonna dive into all of your questions which were submitted on the community page about phantom pain and sensation. Today's video is sponsored by Surfshark VPN. Surfshark is a virtual private network which essentially helps you protect your identity and your information as you are online. You know, we live in a world right now where I genuinely believe people are on the internet more than they ever have been. 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Click that link, check them out. Let me know what you think and let's move on to phantom pain. Let's get the basics out of the way. What is phantom pain? Essentially, it is your brain trying to communicate with a part of your body that isn't there. So when you're born, your brain has a map of where everything is, how it communicates to every part of your body. When you lose a body part, that map doesn't necessarily get updated. And so your brain is still trying to send signals and communicate with something that isn't there and a very unprofessional way of describing it is basically those signals get lost in translation and you feel all kinds of wacky things because of it. Gabriella asked, does the mirror trick actually work? So what they're talking about is mirror therapy where basically you place a big mirror between your legs, you look into the side of the mirror that your good leg is on and it looks like you have two legs again. Doing different motions and kind of trying to mimic them on both sides can be very therapeutic for a lot of people also. When people are having phantom pain or phantom itching, sometimes doing this and itching the leg that still exists and looking at it in the mirror cause you can trick your mind into thinking that like that leg is being touched, it actually works. For me, I have not noticed that it provides a lot of immediate relief. I've tried that many times. Mirror therapy for me was something that helped over time lessen the severity of phantom pain but it's never been super effective for me when I am experiencing pain or sensation right in that moment. Lucy asked, how long does an episode of pain typically last? How long was the longest episode you ever had? As I got out of my amputation surgery, I didn't have phantom pain. I had surgical pain. I got home, still didn't have phantom pain but come a few more days after that it began and when it ramped up, oh my God, came with a passion. There were hours where I was sitting on the couch and tears feeling like I was losing my mind because I felt like a cattle prod was being pushed to the bottom of my foot every like three seconds. Brian, my husband can attest to this. I would just be like jumping and like crying and yelping sometimes every few minutes for hours and that was probably one of the only moments where I really questioned was this the worst decision I have ever made in my entire life because I can't deal with this and one of the difficult things about nerve pain which is what phantom pain is is that it's hard to treat. Normal medications like IV profan or acetaminophen or even Vicodin, Percocet, don't really touch it for most people, if anyone. So I was put on two different nerve pain medications and neither one really worked super well for me but I did start doing mirror therapy and that definitely helped. Now, three years after the fact, I'd say that the longest episodes of pain I have are never longer than minutes. Sometimes they'll last for like up to a half an hour where I'll just get these like zaps of pain every minute or every two minutes for half an hour. The average day though, I'd say, I feel it 10 to 20 times a day but it's spread throughout, it's usually very fast. Are there ever any positive phantom sensations like someone holding or rubbing you off? Do you feel as if you still have muscle memory and the rest of your leg in terms of like toes? Like could I crunch my toes or anything like that? So I don't think I've ever had a positive phantom sensation. I've definitely had neutral ones. From the moment that I woke up from my amputation I felt my toes like in this current moment as I see that my leg very clearly ends right there I can still feel my toes. I could wiggle my toes. Like I'm literally in my head. I even can like activate some of the muscles still. I have never not felt my foot still being there even as I've gone through surgeries and used a prosthetic leg. But aside from the neutral, I don't think that there are a lot of positive sensations that I've ever felt. That Irish lad, excellent username, what's the worst phantom pain you've ever had? Aside from the first couple weeks of recovering from surgery and then like doing mirror therapy to work through it. I would say the worst phantom pain I've ever had was a couple days ago. I'm actually gonna play part of a video. I started this video because phantom pain was kind of starting up a little bit. I was like, okay, now would be a good time to do a video talking about like, hey, I'm in the midst of a phantom pain episode. Here's what I do to deal with it. But instead I just ended up filming some of the worst phantom pain I've had where it wouldn't stop. And when you see me making like these expressions or stopping mid-sentence, it was so painful, so painful. Like imagine the worst cramp you've ever had and then someone is also shocking you with really painful electricity then also someone is like slowly slicing the inside of your foot. It was awful and it lasted for I would say like 40 minutes. It is rare but there are some days when it gets really bad and I'd say ever since surgery that it was probably the worst one I've ever had. Koten Wagnerianer, I'm sure I did not say that correctly, asked how located can phantom pain be? Is it just like general area where your leg used to be or can it feel like your ankles, your foot or individual toes hurt? I am very excited that someone asked this question because one of the most fascinating things to me about phantom pain and sensation is how ridiculously specific it is. When I say I still feel my foot, my toes, my ankle, I feel them and I feel them individually. Remember, oh, I'm so glad this is like coming back this was a thing for a while. It hasn't happened a long time so fingers crossed but I used to feel like someone was paper cutting in between my like big toe and the toe right next to it like just slicing paper like makes me cringe to think about it now but I could tell you exactly where that was happening and as I felt like slicing or burning sensations like if my foot was there I could point to like it's exactly like two inches below that toe it is right there. The way that our bodies are able to remember sensations and translate things is crazy to me. Emily asked does phantom pain ever have a temperature trigger like does phantom pain get worse if it's cold or warm and can I fix it by using the opposite? I have never noticed a direct correlation to any kind of temperature but there are certain situations that do make it worse. If I'm in the water like warm water for a long time like if I'm sitting in a bath or a hot tub sometimes when I get out it's just zapping and zapping and zapping. Other days it's totally fine but that's definitely one trigger that I found but for me temperature in general really doesn't have that much of an effect. Rockeroo 987 when does this affect you? Most often it is in the evening it's usually when I'm just like chilling or relaxing occasionally I'll get it as I'm like walking throughout the day like with steps and kind of like pressure on the bottom of my residual limb will trigger some of that pain but usually it's like after 6 p.m. I don't know why. I asked was it worth it to have the phantom pain over the ankle pain you had before? This was a major factor in me trying to make the decision about amputation because phantom pain is serious. It's not a little thing. It's pretty severe for a lot of people and I didn't know if I was just gonna be trading my ankle pain for something that was the same or worse. That was a risk I took and it did pay off for me. For me phantom pain like I said it sucks but it does pass pretty quickly. It's not constant most days. Most days it just like it exists for brief moments and those brief moments are very painful and uncomfortable but then I can carry about my day. My ankle pain was sustained a lot worse, prevented me from doing things. I think there have only been like one or two days ever where phantom pain has stopped me from like going to do something I had planned on doing. You guys ask such good questions. Jodi asked is there such a thing as phantom heat sensitivity? Like getting cold toes in winter that can't warm up because they're not there. Yes, this happens all the time. I get like a frozen foot. Usually it's when my body in general is cold. Like that foot will feel exponentially colder but sometimes just randomly. It'll feel like it's in an ice bath and I have found that warming the end of my leg whether that be through like a heating pad or something like that can provide some relief. It seems to kind of soothe the nerves or whatever is going on there but yeah, differences in heat for sure. I never get the hot one. Like I've never felt like it was too hot but I often feel like it is freezing freaking cold. Ooh, I love this question. Jordan asked is someone were to kick your prosthetic leg would your body act like it's your real leg and would it hurt? This blows my mind. The answer is I feel it for a second. There have been times when I like dropped something on my foot, right? And I saw it drop on my foot, my prosthetic foot and I literally felt the impact of it for half a second. Like I felt the pain. I felt, you know, pressure on my foot just because I could visually see it happening. It was like my nerves were predicting what I was gonna feel and so I was feeling it before it even happened. So a friend once gave me like a foot massage on my prosthetic foot and if I am watching it happen, I freaking feel some of it. Like I feel like someone's kind of touching my foot. It is so absolutely bizarre and weird. Ashley asked is there ever a time when it will stop being a thing an amputee has to deal with? You know, I don't know. I know some amputees who have never dealt with phantom pain. There is a surgery that can help with that that I have had. Unfortunately, I'm in like the 15% that it wasn't effective for but it's called a TMR surgery and it helps a lot of people alleviate that phantom pain and sensation. But in general, if you do have phantom pain, I don't actually know what the long-term outcomes are. I know that mine has not improved at all as time has gone on. It kind of just stabilized and has stayed at this level pretty permanently. Could it totally go away? I think it could. I don't know how likely that is. If you're an amputee and it has for you, I would love to hear from you in the comment section down below. This is interesting. MK the maniac. Is there anything an outsider can do to help? Like would distracting you by talking about something else help? Thank you for asking this question. I think it's fantastic when people are like, how do I help? You know, my friends or my family members when they're dealing with fill in the blank. For me, distraction doesn't really work. When phantom pain hits, it is all encompassing for the moments that I am feeling it. If it's especially prolonged, I do better if I just sort of remove myself from social situations because I have a hard time managing pain and also trying to like be a person. I imagine this probably varies for everyone. The most helpful thing that has been for me is just people being like, is that fan of pain? I'm really sorry that sucks. And just like acknowledging that I'm experiencing it that feels validating and I feel less alone even though I'm the only person who's feeling it right. So I think just being with people as they're going through it can be really helpful because it's the type of pain that can feel really lonely if that makes any sense. So there are a couple things that I do that help phantom pain. For me, like just shaking my leg or like wiggling it, trying to like stimulate that area a lot can interrupt some of the nerve signals and sometimes helps it calm down quicker. Maybe that's in my head. I don't know, but it definitely does help. Like vibration, you know, just a lot of movement. Also sometimes massage, it just seems like general, you know, activity in this area can calm it down faster. You know what? Any more good questions on phantom pain that I wouldn't even think to answer that I'm actually gonna make this a two part video. So I'm gonna end this video here but be on the lookout for phantom pain part two video because I do think this is such an interesting topic. And I know for me, it was so mind boggling and I just, I want to share as much as I can and answer your wonderful questions. So a big thank you again to our sponsor. Check out their link down below. Huge thank you to my patrons over on Patreon. Thank you so much for everything that you do for me for supporting this channel and making it possible. And to you watching this right now, thank you for spending a few minutes out of your day here with me today. You could be anywhere else in the world doing anything else. And you chose to hang with me for a little while and I really appreciate that. I love you guys. I'm thinking about you and I will see you in the next video. Mwah, bye guys. And her from the sky.