I’m not an amputee but 35 years after a catastrophic snow skiing accident and I have almost every type of pain you describe. It can be so embarrassing in public when you make an eeking sound scaring the crap out of those around you. I’m a a double knee replacement and I naively thought that I would be “healed.” Even though I can walk further and climb hundreds of stairs I have THE EXACT AMOUNT OF PAIN. It’s frustrating being a woman bc the doctor thinks you “overreacting.”I digress… I relate to you on so many levels. ❤🙌🤩🥰
I “was” one of the “lucky” amputees and never suffered with phantom pain ever since the day I became a transfemoral amputee in 1987! That was until I moved to my new “disabled friendly”, ground floor flat in 2019. Although it was “allocated” to me as a disabled flat by my local council, it didn’t have a wet room, which any amputee knows is the most easiest and safest way to shower. It had a bath tub with a wall mounted electric shower, which was situated over the bath tub. While I was waiting for my council to decide if I really needed a wet room and then install one (2 years), I got fed up of having to keep going to my local gym to have a shower “safely” and used the shower in the bath tub at home! Bad decision, possibly the worst decision I have ever made in my entire life! Needless to say, without any “grab rails” on the walls to help and support me, I slipped and fell and on the way down, I managed to bang the end of my stump on the edge of the bath tub. Ever since then I have regularly suffered with phantom pain. My Orthopaedic Consultant has said it’s not phantom pain, it’s because I have damaged the peroneal nerve, which supplies movement and sensation to the lower leg, foot and toes but seeing as I don’t have a knee, lower leg, foot or toes on that side, what else would you call the excruciating pain, which feels like someone is stabbing the top of my foot with a red hot, electrically charged knife? Honestly, the pains are so sharp & painful, they take my breath away! Even giving birth to my nearly 10 pound baby boy, naturally without any pain killers wasn’t any where near as painful as these are! I wouldn’t wish phantom pains on my worst enemy!
I am sorry you have to experience that pain. I gave this video a thumbs up for bringing awareness to us about the experiences of people who go through this kind of pain.
Phantom pain is why my doctor wouldn’t amputate my foot when I have asked more than once. Our bodies are so strange how they can feel things that aren’t there.
This makes it sound like you just asked your doctor, out nowhere, to amputate your foot. And they had to come up with some reason why they wouldn’t do it. 😅😂
😂 I have a nerve disorder in my foot that can sometimes make life debilitating. After years of different therapy methods 99% of my days are manageable.
My experiences with phantom pain are pretty much right inline with what you describe here Jo. Today has been a decent day thus far (but its only noon 😬), fingers crossed that it stays this way. Even though I have yet to have any of those sudden, jolting, bursts of electrical shock, I still have a constant 'buzzing" feeling in my residual limb (AK left leg) all day long. My surgeon has recommended that we move the TMR that I had during the surgical amputation, higher up in my hamstring. Like midway up to the center of the muscle. The amputation was just above where my knee was and so I am lucky in that I have a long residual limb and have the room, so to speak, for the TMR to be moved. He (surgeon) is confident that this would relieve me of a good deal of the phantom and nerve pain that I experience. I just have to wrap my head around having to have yet ANOTHER surgery. This would be somewhere around fourteen or fifteen since 2014.
Thank you for brining more awarness to chronic pain/dynamic disabilities. P.s. I love your new wheels 😍 💙 mine are in transit and I'm so antsy waiting.
My pain can hit so hard and fast, I jump and shriek. It not only surprises me but freaks out any person around me. Nothing like bringing more attention to myself.
Damn I'm sorry, that's really terrible to not only be in pain you can't control, but also get completely unwanted and unhelpful attention in a moment where I assume you only want to be alone until you're okay again. I wish you people in your life that don't make you feel singled out for pain and circumstances you never chose.
Worth a try….try it. I was having a panic attack which I’m not given to, I had pressure to finish something on the computer, and it wasn’t going well. I put 4-5 ice cubes in a baggie and held it in my left hand. Anxiety stopped….dare I say….cold. I don’t think holding a cold beer would work. Near pain is what works. Brain sends hazmat…..no time for this other. Try it.
Thank you for sharing your experiences like this. It's so good to learn about this stuff so I can better understand people in similar situations. At my church there are a couple of amputees and I was so afraid of staring or being rude and it made me really anxious, but knowing more about your experience helps me to be more at ease around them and I can get to know them better without being as afraid of doing something wrong. You're really cool and I hope you have an amazing day.
I've suffered phantom pain for 51 years and your explanation is spot on. I use a Tens machine to sleep at night. It doesn't stop the pain but it does take my mind off of all but the most severe pains and I sleep much better when I use it.
I'd always heard of phantom pain, but I never knew it was so often. I didn't even think it was a daily occurrence, let alone several times a day. Do you know if it will lessen over time, or will it always be that often? Though I guess every amputee's experience is different. Wishing you the best.
yeah it very much varies. I'm no expert, but one of Jo's friends Annika said she's never experienced any phantom pain (though she did have a different type of pain)
I’m a bilateral below knee amputee of many years. I still experience phantom pain although not as often now but still very intense. I’ve met Annika at a conference in Kansas City and she told me the same story.
Bless these videos! I’ve been writing a story with an amputee as the main character and it is wonderful to watch videos from someone who can explain the daily ins and outs of It so I can do it justice
One week ago I had a below knee amputation. Returned home from hospital after five days. I’m brand new into this world. Feeling blessed yet emotional at times. I’m a kindergarten teacher, usually so active, and for six months I haven’t been able to work. Until I get a prosthetic I’m quite immobile. Staying positive, resilient and blessed to the best of my ability.
I just had my arm amputated and experienced some phantom pain. The doctor told me some people have said vitamin C helped. I started taking 1000 mg vitamin C and it completely went away ❤
I first learned about phantom pain when I saw the treatment with using a mirror to trick your brain into thinking the appendage is still there. It's still so weird to think of how our brains mess with us sometimes. Thank you so much for sharing and educating!!!
I thought phantom pain would happen mostly on rainy weather. And then, it happened to me on a random sunny day. I'm not an amputee but lost the bone in my pinky toe so totally eligible for phantom sensations.
I had no idea Phantom Pain was such a common occurrence, or that the pain was that intense. Kudos to you and all your fellow amputees for bravely coping with such pain.
Hi Jo, thanks again for highlighting this issue, I have tried to explain to mates that I get cramp in a foot no longer there, however I took part in a survey recently, a firm in America, has a device to retrain your brain to recognise the limb has gone, I just wondered if you had heard of them, or even tried it. I do appologise that I cannot remember the name of the firm, but when it comes back to me I will let you know 👍👍 stay positive and thank you as always for being brave and strong enough to make these clips x
Have you ever tried a Night Care sock? Össur has the "Relax Night Care" they have silver string woven into the fabric and are supposed to help with phantom pain. I am becoming a Orthopedic technician and when a patient is struggling more with phantom pain we will usually try and supply them with one and so far it seems to be helping.
I also experience phantom pain. However I would say that most of the time I still feel my lower leg, it can be very heavy and/or hot. I can also say which way the leg is pointing. These sensations can be 24/7 sometimes.
I heard about it. Never thought much about it. Until I experienced it. Haven't had the long ones but the 10-15 second stabbing and rolling sparks. Usually happens around the time I go to bed as well.
Can I ask a question without being rude? ❤️ Do you dream? If so, do you dream that you're wearing your prosthetic? Or using your wheelchair? I only ask because I have dreams where I can run, but my Disabilities make it so I physically can't run, so my running and flying dreams are my favorite! ❤️
I've had some pretty intense zaps lately, but I've noticed it happens more when it's colder out, or stormy. How about phantom sensations? I don't really call it pain, as it's more annoying than pain. Like, a cramp in your "toe" or an itch on your "shin". I'm only about 10 months in and still catch myself going to reach down to itch my leg, only to look like I'm casting a spell in the air space my leg would be.
How have they changed over time, esp going from BK to AK? Since my right BK in May 2022, I’ve had tingling or tickling sensations. Sometimes I’ll be sitting at my desk & feel like I stepped on a Lego. TY for your videos; appreciate the information & encouragement.
I don’t recall who came up with the idea, but the idea of putting The partially amputated limb in a box next to a mirror to trick the mind into thinking that what it sees is actually the full limb is one way of reducing phantom, limb sensations. This works best when there is one partially amputated, limb, and a corresponding limb that is not amputated both of them going into holes in the box. The only clearer information I could find out about this was from a Dr. house video. th-cam.com/video/aIMa6G6EmC8/w-d-xo.htmlsi=25Vk5kbmVPrrBfTk
My step dad smoked a pound of marijuana every 2 weeks and would sit with his leg in the sun when it would bother him but that usually in winter that it was worse. It's gotta be a wild experience to feel as there's nothing to really do about it.
Oh my days, I always use the cattle prod and knife scenario with my nerve damage! I have still both legs though but have thought about getting it cut off sometimes when I'm in so much pain. I wish they could "kill" the nerves like they do with root canal. That would be awesome
Hey Jo, fellow chronic pain sufferer here (fibromyalgia). Have you tried a TENS unit? I have no idea if it would do anything for the nerve pain related to phantom limb. But it might be worth a shot, if it can disrupt the signals even slightly… Thanks as always for your personal and informative content. 💙
5-10 times a Day on a Good Day? And it feels like being stabbed or being hit with a cattle prod? Thanks for putting this stuff in perspective Jo. As a non amputee and someone who thankfully looks like they wont ever need one its very interesting to still learn this sort of info
I believe the percentage of amputees who experience phantom pain is around 80% I am also a below knee amputee and I am blessed to not experience phantom PAIN. However I do have phantom sensations. At night I get pins and needles like my leg fell asleep which isn't pleasant but not necessarily painful. This may change as more and more muscle atrophies and the nerves become more exposed, but right now I only get phantom "pain" if my prosthetic is on wrong, I've been wearing it too long, etc..
As an above the knee amputee, I have a phantom leg sensation permanently. I feel pain in different parts of my "leg". At night, I have severe pain in my big toe, a toe that, along with almost all of my right leg, was incinerated almost two years ago.
My accident was traumatic so when I get phantom pain, and if I don’t subdue it fast enough, it can last up to a week of electrical burning zapping cattle-prod pain so bad I want to cut the rest of my leg off. Thankfully if I medicate regularly, it only happens a few times a year. I do get small zaps here and there throughout the day generally but it’s tolerable just shocking.
It is interesting that it kicks up at night. Reminds me of restless leg. There is an over the counter for restless leg. I wonder if it would have any effect?
@@jsantojr11 Restful legs: Active Ingredients: Lycopodium - 6 X, Pulsatilla - 6 X, Rhus Toxicodendron - 6 X, Sulphur - 6 X, Zincum Metallicum - 12 X Inactive Ingredients: Acacia Gum, Lactose N.F. I did not realize it was homeopathic but my friend uses it for restless leg and says it works very well.
Having fibromyalgia ontop of that likely also makes it worse when I had my surgery on my ankle my fibro pain was hurting me more than the break than the incisions than anything the only thing I’ve experienced that is worse is dental pain which thankfully will never happen again unless my teeth magically grow back somehow lol
my dad's phantom pain hurts worse during rain and storms. He has been an amputee since age 18 and he's 62 today. he never complains much, he is active hunter fisherman worked as a land surveyor for 35 years now works on a farm. never does he complain except when there's a storm he cries and writhes on the couch rolling back and forth in pain. nothing helps him during those times.
it sounds a lot like the random spikes of pain I get in my back (scoliosis) and in my wrist (extensor tenosynovitis), although not that frequently at all.
You've probably already answered this question so I apologize. Is the phantom pain worth the amputation? Going from one pain to another must've been difficult but was it worth it for you?
Hi Jo, I'm a DBKA and fairly new to this. I was wondering how long it took for the phantom pain to lighten up some. Cause mine hurt sometimes all day. Also, my stumps fall asleep. Urghh
I know that this a different situation entirely, but I have chronic pain in my left knee. So essentially all day everyday I have pain in my knee, It doesn't stop, so I know how it feels to have pain that you basically can't do anything about.
I don't know if you've tried it (I hope not) but do NOT put anything numbing on your leg to "interrupt" the pain. I have morton's neuroma pain in my feet and that was a horrible experience, the numb skin amplified the screaming of the jacked-up nerves by at least 4 times.
I dont know if it will help but try to hug or cuddle with a person you love at that time any comfort from anither living being can help again i dont know just an advice i am no doctor
Are you actually meaning stump pain, or pain that seems to be in the part of the limb that is no longer there? I ONLY have hassles with residual stump pain/ugly sensations. As lukewarm as I can get with understanding any triggers, my stump plays up so much more when I am overtired.
Would phantom pain be similar to nerve pain? I have a spinal cord cyst and I get fire in my hands but worse in the bottom of my feet. They are treating me with Lycia and it is better than Gabapentin. I was curious if it was similar. My feet feel like I am walking on a bed of coals. It is so hard to describe. I find if I am busy that counteracts the pain. Night is a nightmare!! Thx!!
Do you struggle to get pain medication like many of us do for our chronic pain? It's weird I don't get phantom pain but I do get that kind of pain you're talking about I'm going to guess it's more like neuropathic pain because I get these electric shocks down my thighs too from fibro. Mine can last for minutes or hours too. It's incredibly difficult and I need low dose oxy, but very hard to get.
Hi Jo,I’m extremely curious about what actually happens so if I may know what actually happened,if your not comfortable I completely understand. Love you Jo ❤
I'm wondering if this is the same kind of pain. I have neuropathic pain from fibromyalgia and while researching it I heard people can experience pain from things that are no longer happening such as healed vounds. Because pain need the brain part to register, it's all real brain, sometimes the signal just gets stuck on. Which is fachinating while terrifying.
Have you tried the mental ilusion of having two legs whit a mirror?I've heard that can help tricking your brain into believing that you are in fact scraching the leg that's gone. Thank you for sharing, love your shorts.
I lost a small bit of finger nothing to what you lost never after that last time I saw the bone has it hurt like it was there I wonder if it has to do with the amount of nerves gone.?? Best wishes.
Is that anything pharmaceutically that they do to manage phantom pain, or is it useless because that messaging is not coming from existing nerve fibers in the leg? Or do we understand fully why phantom pain exists yet?
I am curious to know from any amputees who have tried it… does using a good quality CBD cream on your stump help with phantom pain, at all? I have used CBD cream for shoulder pain, neck pain, knee pain, etc. I have not used it for neuropathy pain, yet. Really just curious, here. What has your experience been?
![You Won’t Believe What Phantom Limb Pain is ACTUALLY Like [CC]](http://i.ytimg.com/vi/0GuE7NaJGb8/mqdefault.jpg)
![You Won’t Believe What Phantom Limb Pain is ACTUALLY Like [CC]](/img/tr.png)
![“อ.เบียร์ คนตื่นธรรม” มาตามคำเรียกร้อง แหกศาสตร์ฮวงจุ้ย เตือนสติอย่างมงาย | แฉ 7 พ.ย. 67 [1/3]](http://i.ytimg.com/vi/5fc4S3xBNfc/mqdefault.jpg)
I’m not an amputee but 35 years after a catastrophic snow skiing accident and I have almost every type of pain you describe. It can be so embarrassing in public when you make an eeking sound scaring the crap out of those around you. I’m a a double knee replacement and I naively thought that I would be “healed.” Even though I can walk further and climb hundreds of stairs I have THE EXACT AMOUNT OF PAIN. It’s frustrating being a woman bc the doctor thinks you “overreacting.”I digress… I relate to you on so many levels. ❤🙌🤩🥰
I believe you and I'm sorry your doctor doesn't.
But why is that phantom pain ? I really wanna know is because of the pain you had before?
Does the mirror box help
Damn I didn't know phantom pain occurred like this. Got educated today! 💙
The Man Who Sold The World
Oh no, not me, I never lost control
My snake feelin liquid rn 😢
I “was” one of the “lucky” amputees and never suffered with phantom pain ever since the day I became a transfemoral amputee in 1987!
That was until I moved to my new “disabled friendly”, ground floor flat in 2019. Although it was “allocated” to me as a disabled flat by my local council, it didn’t have a wet room, which any amputee knows is the most easiest and safest way to shower. It had a bath tub with a wall mounted electric shower, which was situated over the bath tub. While I was waiting for my council to decide if I really needed a wet room and then install one (2 years), I got fed up of having to keep going to my local gym to have a shower “safely” and used the shower in the bath tub at home! Bad decision, possibly the worst decision I have ever made in my entire life! Needless to say, without any “grab rails” on the walls to help and support me, I slipped and fell and on the way down, I managed to bang the end of my stump on the edge of the bath tub.
Ever since then I have regularly suffered with phantom pain. My Orthopaedic Consultant has said it’s not phantom pain, it’s because I have damaged the peroneal nerve, which supplies movement and sensation to the lower leg, foot and toes but seeing as I don’t have a knee, lower leg, foot or toes on that side, what else would you call the excruciating pain, which feels like someone is stabbing the top of my foot with a red hot, electrically charged knife? Honestly, the pains are so sharp & painful, they take my breath away! Even giving birth to my nearly 10 pound baby boy, naturally without any pain killers wasn’t any where near as painful as these are! I wouldn’t wish phantom pains on my worst enemy!
So sorry this happened to you
I am sorry you have to experience that pain. I gave this video a thumbs up for bringing awareness to us about the experiences of people who go through this kind of pain.
Phantom pain is why my doctor wouldn’t amputate my foot when I have asked more than once. Our bodies are so strange how they can feel things that aren’t there.
This makes it sound like you just asked your doctor, out nowhere, to amputate your foot. And they had to come up with some reason why they wouldn’t do it. 😅😂
@@swearimnotarobot3746 Lol, it does 😂 I’m sure they meant that there is a problem with their foot but not bad enough for amputation to be necessary 😅
😂 I have a nerve disorder in my foot that can sometimes make life debilitating. After years of different therapy methods 99% of my days are manageable.
Just out of " no where".
And someone see it happen.
The look on their face. Lol
@@craneridercranerider6038 If you take away the lol, you just made a haiku lmao
My experiences with phantom pain are pretty much right inline with what you describe here Jo. Today has been a decent day thus far (but its only noon 😬), fingers crossed that it stays this way. Even though I have yet to have any of those sudden, jolting, bursts of electrical shock, I still have a constant 'buzzing" feeling in my residual limb (AK left leg) all day long.
My surgeon has recommended that we move the TMR that I had during the surgical amputation, higher up in my hamstring. Like midway up to the center of the muscle. The amputation was just above where my knee was and so I am lucky in that I have a long residual limb and have the room, so to speak, for the TMR to be moved. He (surgeon) is confident that this would relieve me of a good deal of the phantom and nerve pain that I experience. I just have to wrap my head around having to have yet ANOTHER surgery. This would be somewhere around fourteen or fifteen since 2014.
Good luck, if you do end up going through with the surgery!! 💪
@@radinanenova6043 Thank you!! 🙏🏻
Nerve pain is honestly the worst pain I've ever dealt with. Always with you cheering you on!
Thank you for brining more awarness to chronic pain/dynamic disabilities.
P.s. I love your new wheels 😍 💙 mine are in transit and I'm so antsy waiting.
My pain can hit so hard and fast, I jump and shriek. It not only surprises me but freaks out any person around me. Nothing like bringing more attention to myself.
Damn I'm sorry, that's really terrible to not only be in pain you can't control, but also get completely unwanted and unhelpful attention in a moment where I assume you only want to be alone until you're okay again. I wish you people in your life that don't make you feel singled out for pain and circumstances you never chose.
Don't good Thest faint....
Worth a try….try it.
I was having a panic attack which I’m not given to, I had pressure to finish something on the computer, and it wasn’t going well.
I put 4-5 ice cubes in a baggie and held it in my left hand. Anxiety stopped….dare I say….cold.
I don’t think holding a cold beer would work. Near pain is what works. Brain sends hazmat…..no time for this other.
Try it.
Off topic but you look beautiful in that sweater!! 😊
yesss its so cute!
I have ocd and chronic pain and this explanation works for both of them as well! Wonderfully said Jo!
Thank you for sharing your experiences like this. It's so good to learn about this stuff so I can better understand people in similar situations. At my church there are a couple of amputees and I was so afraid of staring or being rude and it made me really anxious, but knowing more about your experience helps me to be more at ease around them and I can get to know them better without being as afraid of doing something wrong. You're really cool and I hope you have an amazing day.
I've suffered phantom pain for 51 years and your explanation is spot on. I use a Tens machine to sleep at night. It doesn't stop the pain but it does take my mind off of all but the most severe pains and I sleep much better when I use it.
I'd always heard of phantom pain, but I never knew it was so often. I didn't even think it was a daily occurrence, let alone several times a day. Do you know if it will lessen over time, or will it always be that often? Though I guess every amputee's experience is different. Wishing you the best.
yeah it very much varies. I'm no expert, but one of Jo's friends Annika said she's never experienced any phantom pain (though she did have a different type of pain)
I’m a bilateral below knee amputee of many years. I still experience phantom pain although not as often now but still very intense. I’ve met Annika at a conference in Kansas City and she told me the same story.
Wow it's still a LOT!! God bless!!
Bless these videos! I’ve been writing a story with an amputee as the main character and it is wonderful to watch videos from someone who can explain the daily ins and outs of It so I can do it justice
One week ago I had a below knee amputation. Returned home from hospital after five days. I’m brand new into this world. Feeling blessed yet emotional at times. I’m a kindergarten teacher, usually so active, and for six months I haven’t been able to work. Until I get a prosthetic I’m quite immobile. Staying positive, resilient and blessed to the best of my ability.
I just had my arm amputated and experienced some phantom pain. The doctor told me some people have said vitamin C helped. I started taking 1000 mg vitamin C and it completely went away ❤
Why that phantom pain occur? Its the pain the person had before ? Its because of the amputation itsself? Or of the previous accident?
Thanks for making people aware of what we go through.
Is that a metal gear solid reference?
I first learned about phantom pain when I saw the treatment with using a mirror to trick your brain into thinking the appendage is still there. It's still so weird to think of how our brains mess with us sometimes. Thank you so much for sharing and educating!!!
doesn't matter if don't have a leg... but but but you have so much, what 99percent people don't have... god bless you❤
I hope you feel better Jo i love you.
I thought phantom pain would happen mostly on rainy weather. And then, it happened to me on a random sunny day. I'm not an amputee but lost the bone in my pinky toe so totally eligible for phantom sensations.
I enjoy your videos
Hope they never get too bad for you, no one deserves a constant pain!
I had no idea it happened soo frequently
I had no idea Phantom Pain was such a common occurrence, or that the pain was that intense. Kudos to you and all your fellow amputees for bravely coping with such pain.
Hi Jo, thanks again for highlighting this issue, I have tried to explain to mates that I get cramp in a foot no longer there, however I took part in a survey recently, a firm in America, has a device to retrain your brain to recognise the limb has gone, I just wondered if you had heard of them, or even tried it. I do appologise that I cannot remember the name of the firm, but when it comes back to me I will let you know 👍👍 stay positive and thank you as always for being brave and strong enough to make these clips x
For some damn reason the cold weather causes phantom pain and my stump is ice cold no matter what I do.
My dad was a below the knee amputee, he lived with a ton of pain.
Oh no, not me. I never lost control.
I'm a triple amputee ,and it happens about 5 times throughout the day.try cbd it helps me.
NO THAT IS NOT BIG BOSS!!??
Nerve pain, oddly worse at night for me anyways. Feels like my foot has a hangover.
Left aka here, same thing. I have noticed mine is more severe during bad weather esp thunder storms.
Brutal!!
Lbk 42+ years now...hardly ever experience phantom pain: thank God!! God bless
Have you ever tried a Night Care sock?
Össur has the "Relax Night Care" they have silver string woven into the fabric and are supposed to help with phantom pain.
I am becoming a Orthopedic technician and when a patient is struggling more with phantom pain we will usually try and supply them with one and so far it seems to be helping.
I also experience phantom pain. However I would say that most of the time I still feel my lower leg, it can be very heavy and/or hot. I can also say which way the leg is pointing. These sensations can be 24/7 sometimes.
Could you and @alex1leg do a video talking about the differences in your prosthetics and your stories?
I totally agree with everything your saying my phantom pains hit me about 5-6 times a day
I heard about it. Never thought much about it. Until I experienced it. Haven't had the long ones but the 10-15 second stabbing and rolling sparks. Usually happens around the time I go to bed as well.
Can I ask a question without being rude? ❤️ Do you dream? If so, do you dream that you're wearing your prosthetic? Or using your wheelchair?
I only ask because I have dreams where I can run, but my Disabilities make it so I physically can't run, so my running and flying dreams are my favorite! ❤️
I often just want to shoot my face when I go through this pain. Lost my foot.😅
Admittedly, always wondered
I've had some pretty intense zaps lately, but I've noticed it happens more when it's colder out, or stormy.
How about phantom sensations? I don't really call it pain, as it's more annoying than pain. Like, a cramp in your "toe" or an itch on your "shin". I'm only about 10 months in and still catch myself going to reach down to itch my leg, only to look like I'm casting a spell in the air space my leg would be.
When I have phantom pain. I wiggle my missing toes and it eases the pain.
How have they changed over time, esp going from BK to AK? Since my right BK in May 2022, I’ve had tingling or tickling sensations. Sometimes I’ll be sitting at my desk & feel like I stepped on a Lego. TY for your videos; appreciate the information & encouragement.
I don’t recall who came up with the idea, but the idea of putting The partially amputated limb in a box next to a mirror to trick the mind into thinking that what it sees is actually the full limb is one way of reducing phantom, limb sensations. This works best when there is one partially amputated, limb, and a corresponding limb that is not amputated both of them going into holes in the box. The only clearer information I could find out about this was from a Dr. house video.
th-cam.com/video/aIMa6G6EmC8/w-d-xo.htmlsi=25Vk5kbmVPrrBfTk
My step dad smoked a pound of marijuana every 2 weeks and would sit with his leg in the sun when it would bother him but that usually in winter that it was worse. It's gotta be a wild experience to feel as there's nothing to really do about it.
I totally AGREE AND WISH I COULD TAKE AWAY HER PAIN WHEN WHERE AND HOW SHE FEELS IT.
Have you tried Ice Gel which is meant for horses?
Oh my days, I always use the cattle prod and knife scenario with my nerve damage! I have still both legs though but have thought about getting it cut off sometimes when I'm in so much pain. I wish they could "kill" the nerves like they do with root canal. That would be awesome
Hey Jo, fellow chronic pain sufferer here (fibromyalgia). Have you tried a TENS unit? I have no idea if it would do anything for the nerve pain related to phantom limb. But it might be worth a shot, if it can disrupt the signals even slightly…
Thanks as always for your personal and informative content. 💙
So true!
just asking,,, what about ice,,? different pain/feeling
5-10 times a Day on a Good Day?
And it feels like being stabbed or being hit with a cattle prod?
Thanks for putting this stuff in perspective Jo.
As a non amputee and someone who thankfully looks like they wont ever need one its very interesting to still learn this sort of info
I believe the percentage of amputees who experience phantom pain is around 80%
I am also a below knee amputee and I am blessed to not experience phantom PAIN. However I do have phantom sensations. At night I get pins and needles like my leg fell asleep which isn't pleasant but not necessarily painful.
This may change as more and more muscle atrophies and the nerves become more exposed, but right now I only get phantom "pain" if my prosthetic is on wrong, I've been wearing it too long, etc..
I’m & have the same pain but we gonna Fc.ing come out flames like a Phoenix. Remember that )
As an above the knee amputee, I have a phantom leg sensation permanently. I feel pain in different parts of my "leg". At night, I have severe pain in my big toe, a toe that, along with almost all of my right leg, was incinerated almost two years ago.
Are there no nerve blocks, nerve cauterization, or some other thing to numb that?
My accident was traumatic so when I get phantom pain, and if I don’t subdue it fast enough, it can last up to a week of electrical burning zapping cattle-prod pain so bad I want to cut the rest of my leg off. Thankfully if I medicate regularly, it only happens a few times a year. I do get small zaps here and there throughout the day generally but it’s tolerable just shocking.
I've been a amputee for 30 years.Aspirin helps with phantom pains
It is interesting that it kicks up at night. Reminds me of restless leg. There is an over the counter for restless leg. I wonder if it would have any effect?
@Whatever Whats the OTC?
@@jsantojr11 Restful legs: Active Ingredients: Lycopodium - 6 X, Pulsatilla - 6 X, Rhus Toxicodendron - 6 X, Sulphur - 6 X, Zincum Metallicum - 12 X
Inactive Ingredients: Acacia Gum, Lactose N.F.
I did not realize it was homeopathic but my friend uses it for restless leg and says it works very well.
@@Whateverhasbeenmynameforyears whats the actual Rx called?
@@jsantojr11 Restful legs
@@jsantojr11That means "over the counter". You do not need a prescription for it.
Having fibromyalgia ontop of that likely also makes it worse when I had my surgery on my ankle my fibro pain was hurting me more than the break than the incisions than anything the only thing I’ve experienced that is worse is dental pain which thankfully will never happen again unless my teeth magically grow back somehow lol
my dad's phantom pain hurts worse during rain and storms. He has been an amputee since age 18 and he's 62 today. he never complains much, he is active hunter fisherman worked as a land surveyor for 35 years now works on a farm. never does he complain except when there's a storm he cries and writhes on the couch rolling back and forth in pain. nothing helps him during those times.
it sounds a lot like the random spikes of pain I get in my back (scoliosis) and in my wrist (extensor tenosynovitis), although not that frequently at all.
You've probably already answered this question so I apologize. Is the phantom pain worth the amputation? Going from one pain to another must've been difficult but was it worth it for you?
Je me demande cela aussi, svp
Ya you never know how long or wen and how extreme.
No idea it happened so often. Can particular situations or activities trigger it?
Do you wake up to phantom pain, the way you would with like a Charlie horse? Or do you feel like sleeping helps postpone it? Love your videos ❤️
Hi Jo, I'm a DBKA and fairly new to this. I was wondering how long it took for the phantom pain to lighten up some. Cause mine hurt sometimes all day. Also, my stumps fall asleep. Urghh
I know that this a different situation entirely, but I have chronic pain in my left knee. So essentially all day everyday I have pain in my knee, It doesn't stop, so I know how it feels to have pain that you basically can't do anything about.
I don't know if you've tried it (I hope not) but do NOT put anything numbing on your leg to "interrupt" the pain. I have morton's neuroma pain in my feet and that was a horrible experience, the numb skin amplified the screaming of the jacked-up nerves by at least 4 times.
What's it like missing the leg. And then being able to walk with prosthetics and not feel the ground under your foot
Why we'r still here? Just to suffer?
I dont know if it will help but try to hug or cuddle with a person you love at that time any comfort from anither living being can help again i dont know just an advice i am no doctor
My Brother has the same situation as yours same leg, and he tells me he has that as well.
Gabapentin at 3pm to be able to sleep at night. 4x600mg
Electrical shock !
Are you actually meaning stump pain, or pain that seems to be in the part of the limb that is no longer there? I ONLY have hassles with residual stump pain/ugly sensations.
As lukewarm as I can get with understanding any triggers, my stump plays up so much more when I am overtired.
It does it more when you take your prosthesis off. I also describe the feeling is similar to when your foot is asleep. How did you lose yours? Why?
Would phantom pain be similar to nerve pain? I have a spinal cord cyst and I get fire in my hands but worse in the bottom of my feet. They are treating me with Lycia and it is better than Gabapentin. I was curious if it was similar. My feet feel like I am walking on a bed of coals. It is so hard to describe. I find if I am busy that counteracts the pain. Night is a nightmare!!
Thx!!
I didn't realize it was daily. That sucks.
I'm 8 days post op 3 days home and the phantom pain has been constant with random bursts :( no meds have been helping.
Do you struggle to get pain medication like many of us do for our chronic pain? It's weird I don't get phantom pain but I do get that kind of pain you're talking about I'm going to guess it's more like neuropathic pain because I get these electric shocks down my thighs too from fibro. Mine can last for minutes or hours too. It's incredibly difficult and I need low dose oxy, but very hard to get.
Hi Jo,I’m extremely curious about what actually happens so if I may know what actually happened,if your not comfortable I completely understand. Love you Jo ❤
I'm wondering if this is the same kind of pain. I have neuropathic pain from fibromyalgia and while researching it I heard people can experience pain from things that are no longer happening such as healed vounds. Because pain need the brain part to register, it's all real brain, sometimes the signal just gets stuck on. Which is fachinating while terrifying.
Has that ever happened to you while you drive ? I imagine that would be super dangerous 😳
do you prefer the phantom pain over the pain you had when you had your foot?
Have you tried the mental ilusion of having two legs whit a mirror?I've heard that can help tricking your brain into believing that you are in fact scraching the leg that's gone. Thank you for sharing, love your shorts.
My mom says nearly every day.
That’s so many times 😢
Bro you just jinxed it 😨
I feel like it should come with actual phantoms. Too... distract you? 💛
Did you lookup mirror therapy?
I lost a small bit of finger nothing to what you lost never after that last time I saw the bone has it hurt like it was there I wonder if it has to do with the amount of nerves gone.?? Best wishes.
Is that anything pharmaceutically that they do to manage phantom pain, or is it useless because that messaging is not coming from existing nerve fibers in the leg?
Or do we understand fully why phantom pain exists yet?
I am curious to know from any amputees who have tried it… does using a good quality CBD cream on your stump help with phantom pain, at all? I have used CBD cream for shoulder pain, neck pain, knee pain, etc. I have not used it for neuropathy pain, yet. Really just curious, here. What has your experience been?