What Phantom Pain Looks Like For Amputees
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- čas přidán 1. 08. 2023
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#Phantom #PhantomPain #Amputee
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My Amputation Story!
Fourteen years of pain and failed ankle surgeries brought me to 2018, when I made the difficult decision to become a twenty-seven-year-old below-the-knee elective amputee. This channel has documented my journey adjusting to life with a visible disability as an amputee, and continues to be a haven to discuss physical and mental health!
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So sorry Jo. I experienced this after my mastectomy. You describe it so well. I call it “phantom br*st pain”. I know you hoped the surgery would help. There’s still hope but you must be so frustrated.
Oh f...your experience sound bad as well. Did you get recontruction?
@@lisastenzel5713 No. I am flat. I was in the middle of chemo when I had the mastectomy, which complicates healing. The plan was to do reconstruction after chemo ended, but I was still in so much pain that I didn’t want to have more surgeries.
I had a double mastectomy (different reasons) and can attest to this as well. It’s a very odd sensation. I can’t imagine how bad it must be for Jo :(
Breast isn’t a slur
@ghoultooth sorry for what she's going through.
But you're right, not only is breast not a slur, but we as commenters are not in any Danger of being demonetized or banned from CZcams, so we can say whatever we damn well please. It always baffles me to see comments self-censoring
there is no pain worse than nerve pain. I have spent more time than I'd like to admit scream crying into pillows, desperately waiting for it to pass. sending much love and prayers for relief.
There needs to be so much more research into phantom pain 😩 ❤❤❤
Please read my comment near the top tgat i attached at tge bottom. Sorry this is so long.. I just found Jo from looking up VR therapy for phantom pain. I'm very sorry your in agony. 48 meds tried. Best combo is Lyrica, Cymbalta and especially Suboxone. Seroquel for sleep, sane dose for years. I choose Suboxone over 120mg methadone and the other opiates because of rebound hyperalgesia. The more opiates your on the worse the pain can be especially with Chronic Pain . Ive done over 5000 hrs research. I must try to help others. Never had an addiction. My score is a 1 from 0 to 12. No bad thoughts about those struggling with that demon. But phantom pain will never go away, meaning it can last seconds to hours to months on end. Suicide is real and I hate the phrase "Gid Never Gives You More Than You Can Handle" Really?. Yeah, he wanted ne at afe 12 to be dragged down I-75 and hit by a car 2 years later. I'm going to try a pain pump with prialt which is Snail Toxin with nasty side effects. Then some ither neds which are minute amounts bit passing the blood brain barrier you have less side effects. Then there's DBS which is Deep Brain Stimulation.
I may copy and paste this because others need to know. With warm and gentle thoughts my friend. We all have something whether visible or not. Take care. Im always here for you all🥰🥰🥰🥰 Just Ask
I decided to attach the message I left earlier for Jo. I can inly go into so nuch deoth vut please let me help you🌸💜🌸💜🙏
Total tear jerker. I'm so proud of these Remarkable Parents. Babygirl is a beautiful blessing. I pray you adopt again. So happy I found you today. A gift to me💜🌸💜 I couldn't have children either but it was due to my doctor's fears the baby would be born unhealthy. Starting Age 12 I endured 70 surgeries, 23 broken bones, amputation at the hip, 6 months in traction in the Burn Unit from being dragged down I-75 by a uninsured motorist. 2 yrs later hit by a uninsured teen. No income and I'm struggling. I sweat profusely from my meds for Excruciating phantom limb pain. Wearing a prosthesis is impossible. 48 meds tried. Had to swallow 58 pills per day in the first 6 months of my 9 month stay at Univ of Michigan Hospital. 17 surgeries in NC. 4 in Denver. Over 1400 days as an inpatient. Learning to walk 6 times. Leg removed 8 years later. I CANNOT be in the sun/unrelated. Even driving is frowned upon. It does terrible things to my face. I used to feel beautiful with pride. For a short time I played with The Men's Travel Para Ice Hockey Team and I busted my rear at the rink 5 days a week for 6 weeks and made The Women's USA National Para Ice Hockey Team 🦿🥅🏒. I was in top 3 female players in the World. I had to stop what breathed life into me and changed my mindset. Can't afford it The sweating and sun are the culprits and its forever. I feel like a prisoner. Doesn't matter anymore that Im a "WARRIOR". I couldn't see my parents on surgery days nor the day after in the Burn Unit. No Androids or iPhone then. I'm scared and would give anything to go back or be someone else. I was an athlete and so active. Now I barely eat or sleep. No real friends. You could never imagine all I endured nor the hundreds and hundreds of roommates. I didn't intend to go deep. If i offended anyone I am deeply sorry. I know we all have something whether visible or not. Take time to dream and enjoy. With warm and gentle thoughts of you and those you hold in your heart 💜🌸💜🌸💜🌸💜🌸💜🌸💜🌸💜🌸💜🌸 Do you think I should be ashamed or embarrassed to make a Go Fund Me Account? I'm here for you all anytime 🥰🌺🌼🪻🌹🙏💝23
Try a tens unit. It helps my nerve pain
As a disabled person I can say I know how it feels to have pain from nowhere. I'm so sorry you have to deal with pain like this Jo. When my body is sending me false pain signals I put menthol gel or icy hot closest to the area I can get. (Sadly I can't put it hot straight on my femur bone) and on a higher area (where the nerves connect to the false pain) pinch and roll a decent amount of skin between your fingers. This disrupts the nerve signals and tells your body to adjust the nerves that are firing. It can take some practice for the best result with the nerve pinching. Thank you for allowing us to be a part of your journey Jo. You inspire me every day!
I was wondering if anybody else would suggest the pinch and roll method or a counter-irritant (menthol)! My other suggestion would be a lidocaine patch or cream 5%, on the painful bits and on the nearest nerve cluster to deaden it as much as possible.
*My EDS salutes you both cuz nerve pain is a bitch!
So nice of you to share this. I feel there isn't known too much about what to do. Like even among medical staff.
That was my suggestion too. Icy hot, capsaicin cream, pinch, anything to disrupt and “reset” the misfiring nerves.
@@pennykhamsa4704 omg I've rarely heard other people talk about pinching or rolling the nerves to disrupt it, but I literally do this all over my body for my Fibromyalgia and Ehlers-Danlos pain, even on the top of my head for my worst migraines!
Heat packs and cold packs upstream of the pain help me, for most locations.
People who have not experienced nerve pain cannot understand the torture. It feels like you’re being electrocuted and the burning is unbearable. I’m really, really sorry you’re experiencing this. I truly hope it gets better moving forward, you deserve to catch a break.
Jo, sounds like the periodical pain I experience in my 2nd toe due to neuropathy. Hurts. Topical "Pain Relieving Foot Cream" otc by MagnaLifeDB. Might help some.
I think there’s real value in you sharing things like this. I hope it gets better as the surgery continues to heal.
Man, this sounds like when my Trigeminal Neuralgia rears its ugly head... I don't wish severe nerve pain on anyone. Genuinely, I hope this surgery will prove successful & help relieve your agony. 💕
Sorry Jo. Hope the surgery worked in the long run…
*sends virtual hugs*
I can relate; when my wrist flares up it's like that.
Pain SUCKS!!! I feel ya. I have Guillian barré syndrome (it’s a nerve syndrome). The pain can last for a couple seconds to a few minutes.
Is that face pain? I heard of that condition but I can’t place what it actually entails.
@@andynonymous6769 What you're referring to is probably Trigeminal Neuralgia. Guillain-Barré typically affects the whole body, starting with weakness in feet and hands and back pain, and progressing rapidly from there.
@@luciahoneybeeAre you a doctor or something 🤔? ❤❤❤
@@luciahoneybee thanks for the clarification!
@@vikkiledgard8483 No, I'm not a doctor myself, but I grew up around A LOT of doctors! This kind of things are discussed daily at the dinner table 😅 And, coincidentally, I very recently listened to a podcast about Trigeminal Neuralgia, while a friend of mine came down with Guillain-Barré in 2020. So it was just fresh in my mind! 🙈
I’m sorry Jo. You are such a trooper. I know you inspire so many people.
😢😢😢 i hope the surgery helps.
Thank you for sharing this part of your life as well! Obviously don't feel pressured to if you want to keep it to yourself, but thank you for being vulnerable and authentic 💛
I have these all over my body nerve damage and muscle stuff and my treatment is muscle relaxers, medical merijuana which is honestly the most effective however it works best if it does contain both thc and cbd/cbg, and a massage gun or exercises essentially to calm the muscles so it will stop spasming while im on gabapentin for the electrical pains. Weed can be more helpfull than opiods and for me even opiods didnt even dent my chronic stuff like a small amout of thc and cbg does its quite fascinating i hope you find some good pain relief sooooon!!!❤❤
I'm so sorry Jo. I know you've tried everything you can think of for it ❤
I also know as spoonies when we're in pain we can forget some of our coping techniques and your description reminded me that my TENS unit helps me with nerve pain. I know as a fully limbed person my experience of nerve pain is different to yours, so it's just a thought that popped into my head and I'm sure you've already considered it, but if not I wanted to pass on the thought.
Sending much love and calmness to your nubbin so it settles down for you ❤🫂
Helped how? Lessened or made it go away?
Do you attach the TENS to the area where the nerve pain occurs or somewhere else along the nerve pathway?
I have only used TENS to heal after surgery and to address adhesions with joints. I have neuropathy though, hence my curiosity. No doctors or anyone else has ever mentioned using TENS for this type of pain.
@@rtd1791 When I have it my nerve pain is down the sciatic nerve and originates from my back. So I mainly use it on my lower back, ie higher up the nerve than where the pain is. I did also use it along the painful area once I think. Both worked, although I prefer it on my lower back with the pair of electrodes in an X.
To me my TENS unit feels like a buzzing sensation. So it doesn't stop the pain but rather somewhat replaces it with a buzzing sensation, although not fully. Really it's combination of the two but definitely much less painful. The theory here is you're sending electrical signals down the nerve from the TENS which overrides/drowns out some of the pain signals.
I recommend checking in with your dr before you try using one to check it's appropriate for your neuropathy. I bought mine reasonably priced off Amazon quite a few years ago and it's still going strong. I have to replace the electrodes every so often but they're pretty cheap.
As a fibromyalgia sufferer, I can sympathize with random pains that make no sense 🫂
Facts!
All of us coming out of the woodwork lmao!!
Here’s another one also empathising
MS here and same. Random nerve twitches and spasms and cramps that come out of nowhere at the worst time. But in my case I have a source, Jo doesn't. I can't imagine how frustrating that would be.
Sending all the virtual comfort, hugs, and pain relief possible. While I don't have any nerve pain, and my worst migraines are probably child's play compared to yours, I try to empathize.
It's sad we still know so little how to treat these conditions.😢
I see you are in pain and frustration Jo... I hit the like button because you are so brave to post what you are going through ❤
Aw Jo I'm so sorry, I really hope it gets better for you
I feel you ~ I was diagnosed with CRPS or Complex Regional Pain Syndrome after my ankle would not heal from rolling it, due to my limb being numb and weak from CES or Cauda Equina Syndrome (herniated disc crushed bottom part of my spinal cord) and bc they didn’t MRI in time, my nerve pain is forever and with the CRPS it’s the worst nerve pain spasms that make me scream and comfort my body and it’s sucks so bad and Jo- I’ve been watching you since b4 by emergency laminectomy/discectomy 6.11.21 and THANKS TO YOU and your positive videos help keep me sane!!! CRPS pain is nicknamed the suicide disease bc pain is high on McGill pain scale.
WHAT I AM TRYING TO SAY is you are my mentor, my HERO in helping me in trying to stay positive❤❤❤❤❤
Man, I FEEL this video. I too get this in my residual limb, its crazy painful, and as you say, nothing helps. Hang in there Jo, you're not alone, we love you, hope it settles soon as the nerves heal xo
You are impressive. This is fearless vulnerability that social media does everything to hide... the comments I'm reading here- you are helping heal everyone going thru this pain. There is so much power in sincerity. I'm so impressed! Thank you for sharing this... i am an RN. There is treatments for this kind of neuropathy.. but it borders more on psychology rather than somatic treatments. It has helped. Don't give up on finding options. God bless.
Good description of the pain and how hard it is to bear it. It's been 40 years since my AKA and I still have episodes, but they are less frequent. Keep your chin up
i'm so glad I found your page. I love your content. I am currently in my 16th month of stroke recovery and I'm left side paralyzed and now I know it to call those shock phantom pain is really h painful and yes, it does drive you insane in the brain. In fact, sometimes it takes over.
So basically brain just periodically realizes that your leg is gone and has a panic attack trying to find it.
You do a great job of describing it, Jo. One of my 'magic wand' wishes is for false pain to stop, for all of us.
That’s really rough but I applaud you for educating everyone about what your journey has been like even on the hardest days! Keep your head up! I’m hoping that the healing process goes by quickly 💜
Keep your head up 💜
Nerve pain is the worst a couple months ago i was put in a wheelchair i was healthy up until then your videos have helped me get through this difficult time and realize that even though i have some disadvantages it doesn't mean i can't do the things i want to. Last week i went on a
handcycle, a 3 mile walk/push, and went swimming in a lake. All things i used to love doing. Thank you so much❤
So sorry you’re going through that. You’re indomitable. Hope it clears up. 😢 ❤ hugs
I just stumbled upon ur youtube, ur very inspiring. I am so sorry for what ur experiencing with the phantom pain, i unfortunately due to CRPS in my lower right leg, know what ur going through. I have it for 8 years now, day in day out, after a botched surgery and gosh the pain faced daily is debilitating. Ur crazy strong! Much strength and hugs for you!! ❤
Jo I know exactly what you're dealing with because I had a below the knee amputation as well. Try to hang on. I am losing nerves as well due to Diabetes.
I had my spine fused L4-S1, and deal with random pain in my legs and arms like this. It will drive you nuts. You’re doing great Jo!
Praise you for what you do and what you been thru
I can't imagine what that's like, or just how much that gets in the way of you living your life. I really hope that treatment is able to, at least, lessen the amount or the severity of your phantom pain!
I appreciate you taking us on your journey.
Girl I feel ALL YOUR PAIN the hardest part is trying to explain to people and they just look at you and say all kinds of what if's you should do
THEY DON'T KNOW
$#!T
I have neuropathy in my feet, and I have another more serious nerve condition I had to have major bone surgery in my ankle and while I was healing for that..for a few months...the pain I felt is like what u are describing, I sometimes would cry it was so bad..it was like spasms, hot poker stabs, electric shock in places its aweful! I've never had anyone else that could come close to understanding what I was going through, I was able to keep my foot, but im so thankful to have u talk.about this pain and can relate to what I went through....I pray ur pain is stopped ❤
You have this Jo keep staying positive gorgeous ❤
Im glad I found you today. I can have excruciating phantom pain tgat is indescribable. Your brain has a map of your body and when a limb is removed depending on the amount of trauma whether it was congenital or cancer or from being paralyzed can be absolutely different for every single person. I wrote my story below but I have endured excruciating phantom limb pain more days and hours and months without a break over the period of the 28 years. I had two major revisions where I was cut from side of my upper thigh all the way around the bottom of my residual limb up to my groin 2x. I have researched this over 5,000 hours and I have over $5,000 in medical books. Doctors know a lot more now and I guarantee not one of them could do their job with the type of pain I have along with other amputees. Then there's the judgment oh well someone saw I saw it running down the street with an above knee prosthesis!!!!!!
My head spins around I had 200 prosthetic appointments in the first two years and I would spend eight hours there with no Android no iPhone no tablet no drove my 90 minutes in agony as the agony got worse and worse over the day just sitting there by myself and then the drive home. I'd give anything to be able to fit into a prosthesis but I have all of about 3 inches of residual limb. I sweat profusely and I can go a month without a bowel movement. I can't afford the VR therapy. I never got a settlement nor do i have income. Enough. Read below 👇🌸💜🌸💜🌸💜🌸💜🌸💜🌸 I think everybody has their own story but I feel mine is really unfathomable but you are welcome to ask me any questions?????🥰🥰🥰
Starting Age 12 I endured 70 surgeries, 23 broken bones, amputation at the hip, 6 months in traction in the Burn Unit from being dragged down I-75 by a uninsured motorist. 2 yrs later hit by a uninsured teen. No income and I'm struggling. I sweat profusely from my meds for Excruciating phantom limb pain. Wearing a prosthesis is impossible. 48 meds tried. Had to swallow 58 pills per day in the first 6 months of my 9 month stay at Univ of Michigan Hospital. 17 surgeries in NC. 4 in Denver. Over 1400 days as an inpatient. Learning to walk 6 times. Leg removed 8 years later. I CANNOT be in the sun/unrelated. Even driving is frowned upon. It does terrible things to my face. I used to feel beautiful with pride. For a short time I played with The Men's Travel Para Ice Hockey Team and I busted my rear at the rink 5 days a week for 6 weeks and made The Women's USA National Para Ice Hockey Team 🦿🥅🏒. I was in top 3 female players in the World. I had to stop what breathed life into me and changed my mindset. Can't afford it The sweating and sun are the culprits and its forever. I feel like a prisoner. Doesn't matter anymore that Im a "WARRIOR". I couldn't see my parents on surgery days nor the day after in the Burn Unit. No Androids or iPhone then. I'm scared and would give anything to go back or be someone else. I was an athlete and so active. Now I barely eat or sleep. No real friends. You could never imagine all I endured nor the hundreds and hundreds of roommates. I didn't intend to go deep. If i offended anyone I am deeply sorry. I know we all have something whether visible or not. Take time to dream and enjoy. With warm and gentle thoughts of you and those you hold in your heart 💜🌸💜🌸💜🌸💜🌸💜🌸💜🌸💜🌸💜🌸 Do you think I should be ashamed or embarrassed to make a Go Fund Me Account? I'm here for you all anytime 🥰🌺🌼🪻🌹🙏💝
I am so sorry you have to deal with phantom pain. I read a story once about a soldier in Iraq who lost a leg in combat. A nurse came to check on him, and he was crying. She asked him what was wrong, and if he had phantom pain. He replied "It doesn't hurt. It itches." That was hard to read.
You are a warrior . Can’t even imagine the pain the pain you are undergoing. You are inspiration to many.
Poor baby! Sending prayers 💕💕
When I have my phantom pain, remind me I had a leg there before, so I just wave my hand in the empty space and wait till it goes away. 🙏🙏🙏❤️ Stay strong young lady.
I'm so sorry you're having to deal with so much phantom pain right now, but thank you for sharing your experience with us all. If you felt up to it, I think a video about the treatments/therapies you've tried for phantom pain would be really interesting. As someone completely outside of this world, I have no idea what doctors would even suggest to try and manage it - heat? Ice packs? Vibration to numb the nerve response?
My heart breaks for you. And knowing there’s nothing you can do 😢
Man I hope so so much that it’ll get better sometime
You have described it so perfectly the phantom pains really hurt, and nothing you can do about it like your videos keep them up
This post is intended to share information about pain reduction. Gabapentin has been a life saver for me. I had back surgery in 2019, and I experience pain in different places. Due to the fusion in my back from L3 to L5, I struggle with sharp pains in my back, my left hip and left knee. Sometimes the pain lasts a few minutes, sometimes hours.I hope your pain starts to reduce or even become a dull ache soon! I have not had an amputation so I cannot compair experiences. You are a strong, beautiful and brave!
Kirlian photography, the energy body is not removed with the dense (physical). Heal the energy body and the pain quiets. You are amazing !
I relate. The pain frequency has lessened greatly since 2002, but it hasn't gone away completely. In a way it's more surprising because it goes so long between flare ups and I haven't been able to figure out if there are any triggers. Sending you massive healing energy.
So sorry you're dealing with that! I'm sure you're exploring all options with your doctors, but I recently learned one of the meds I'm taking for other reasons (topirimate) can help with pain from damaged nerves. It looks like there are a couple case studies of it being used successfully with amputee to deal with phantom pain, too. Not sure if it's worth the side effects (they can be a bit much initially, but are hugely person-dependent and tend to go away) but I figured I'd mention since it may not be standard practice and it sounds like you've exhausted all the more normal options. :)
I’m so sorry. I know people that go through that also. 😢
Gives you a wonderful chance to "Talk with your Toes" again. I had a TMA Operation, later proven to not be needed, and I briefly feel my toes again.
Love to you, Lady. I see the pain strain on your face. It hurts to know what you are going through.
Jo, my right leg was amputated below the knee just one week before Christmas 2022. And one week after my birthday. So it was a double gift. The Phantom Limb pains are easing off after 9 months but still hit me up at night. Gabapentin helps. I still feel my foot and I’m curling my toes as I speak. Where do you get your liners, shrinkers and nub socks?? I appreciate you sharing your information and adventures. Please keep them coming!! 🤟🏽
Oh girl, I went thru that for a year after dislocating my ankle. It was like an electric jolt and nothing helped. I feel you hard there! ❤
I realize that this is not the same, but I had random nerve pain in my face for about 10 years where melanoma was carved out twice. You have my compassion.
Ge Joe sorry to hear your in pain tonight no pain meds Mike hope you feel better
I hate nerve pain. It's the worst. I've found scabs and bruises from wounds on my calves that I don't even feel when it happens because the nerve pain overrides everything. I've been going through a crps flare and the only thing that helps is smoking a lot of🍃🍃 so i can put some distance between my brain and the pain. I hope the bs improves for you as you heal from the most recent surgery. ❤
I was just diagnosed w CRPS in May of this year! It sure is wicked!
Oof, sorry you're in the pain club at the moment too. I tried a new med for my migraine yesterday and it...really didn't work. Got super nauseous so I was unable to take any other meds, eventually managed to fall asleep, barely slept and then woke up, well my head woke me up and I couldn't think, just heave over the side of the bed. It feels like my brain is trying to explode.
While I have all of my digits (and supporting limbs) peripheral neuropathy drops little surprises on me . . . Like the sensation of a hat pin through my foot! My heart goes out to you. I hope I can have your attitude as this condition progresses.
PS: love the tee. My wife has one with the image of a doleful eyed Golden looking straight at the viewer; “Excuse me, were you going to eat that?”
Thanks for the inspiration today 🎉❤
So sorry you are going through this...I can relate to the nerve...electrical feelings... very disrupting.😮
Have you tried the box/mirror trick? I don't know if it will actually work, but it couldn't hurt to try.
I like it when people talk about this stuff. I appreciate being able to see the struggle.
Okay. So if I’m dead bang honest, I am so over being told how another person, typically with a different set of health issues, handles their illness/pain so much better than me. When I was in college, one of my professors lectured me about another student who had cystic fibrosis and managed to attend more classes than me. Told me all about how noble this other student was and how he had doctors beat on him over summer breaks so he could attend school. Yeah, I never knew what this meant. Knew for sure it wasn’t doctors though. Doctors never do that kind of stuff, they tell nurses, physios, and other techs to do stuff.
Anyway, my thought as I was enduring this lecture, was don’t you think if doctors “beating” me for a summer would fix my body, then I would do it? I sincerely do not understand the people who seem to believe that there’s a solution but for whatever reason--I’m too what? lazy, stupid, perverse --to employ it. I have a form of inflammatory bowel disease due to an endocrine disorder. Also, my various medical issues result in chronic pain.
I know other people who like me have what I call MMI (multiple medical issues), have been through it all. I’ve been weighed, assayed, irradiated, medicated, electrocuted. Ugh, I have had every possible kind of test. At this point I think what I fear most is having my hopes raised, because I don’t want to contend with the bitterness of disappointment.
I like it when other people share how gawd awful some of this stuff truly is. Thank you, Jo.
I hope it gets better for you.
I don't know if this will help, but I'm reminded of an episode of House. Guy came in, one of his hands was amputated and he was suffering phantom pain. He couldn't get it to stop and nothing anyone tried was helping. House then had an idea; he constructed a box with a mirror and told the guy to stick his residual limb in it. He put his other hand next to the box, so the mirror made it look like he had two hands again. House told him to clench his hand really tight, as tight as he could, until he couldn't stand it anymore. The guy did this, seeing two fists clenched really hard, and the pain was agonizing. Then House told him to relax his hand. The guy did so, and the pain went away. So, I was thinking, would a mirror box help maybe?
100% sympathy *hugs*
I'm an LBKA and get the spasms and electrical shock thing.
Few days ago had meat leg resting on stump. I had phantom sensations that I can only describe as feeling pulse in heel of phantom foot.
Nerve healing is no joke. Speaking from experience 👍🏼
I'm sorry if somebody's already mentioned this, but have you tried the mirror trick? I studied neuroscience for a while and phantom limbs were one of my interests. Essentially, you set up a mirror so that visually you see the reflection of your existing full limb. Then you try to stretch, move, massage whatever your existing limb. The visualization and physical sense input can trick your brain into thinking that your phantom limb is receiving the same stimuli. ❤
Another interesting phantom limb / neuroscience thing is that sometimes our brains will remap physical sensation from the missing body part onto other parts of our body, commonly the face. So sometimes people who are missing a hand and are experiencing phantom pain or a phantom itch, have been able to map out their phantom hand on their face and actually determine where to scratch on their face to relieve the itch their phantom hand is feeling.
I'm not an amputee, but I do experience lots of random chronic pain and spasms as a result of my autoimmune diseases, and sometimes I cannot physically get my leg or arm or whatever it is to release, and I have to actually stretch the other limb and I kind of stand in front of them mirror sideways if that makes sense to try to trick my brain and it can help loosen my seizing limb enough to actually move the joints again.
I’m 2 weeks out of my below knee amputation(2nd one from a fall as well ugh ) I’m glad I found your videos and ty for putting so many of my feelings into words ❤nerve pain is aweful to say the least😢
A remarkable and strong women she is.
Hey, I'm sure you've tried everything and more... So disregard this if it's not helpful, but I practice EMDR therapy with folks. It is mostly used for trauma, but i know one of its first applications was for phantom limb pain. Just wanted to state it in case somehow it hasn't already been suggested. Thanks for the vulnerability you share with everyone on here. ❤
EMDR helped my husband so much with his PTSD. It was like a miracle! He was in bad shape and it basically cured him! No more flashbacks or panic attacks. I cannot emphasize enough how amazing it was for himm.
I had no idea it could be used for other things!
Hi! I know nothing and i wouldn't dare to say i do, but I've heard of mirror therapy. Where you flex your remaining limb in a box split with a mirror. Supposedly it tricks your brain into seeing the amputated limb relax. Please dont take this as me telling you what to do, I just saw it and thought maybe you hadn't heard about it.
Regardless, I'm sorry you're in so much pain and I hope it relaxes soon!
Those are exactly what I experience too!! So hard to explain in a way people can really understand.
I always imagined phantom pain as a dull ache, like a sore muscle. No idea it was that bad. I'm learning a lot from your posts.
Please feel better soon.
My husband is an amputee as well. He’s described his phantom pain to me by grabbing my hand/fingers in a specific form and tells me the pain and pressure is a day to day occurrence. He’s a partial arm amputee. I feel for you guys and wouldn’t have the strength to go thru what you guys have to on the daily.
Sorry to hear about your amputation l lost my leg above knee in 1984,still get the pain good luck
Joe Liam from Ireland like watching your videos, feature amazing things you do with that.Oh, words just blow me out on the world very good.Yeah always will keep following you no matter what
I used to get restless leg when I would drive for many hours. I hooked up an E Stim to my legs. I would just crank it up to be more pain than what my leg was causing. It worked and may be worth a try if you havent already.
a friend of mine has nerve pain and spasms due to partial paralysis, they prescribed her various medications which mostly did nothing except make her feel sick. the one thing that actually helped was edibles, the thc would slow the nerve connections and allow them to reset.
I learnt from an old amputee that if you put a mirror to see two legs again through the mirror it's meant to help with this problem. It's to do with you body still thinking the limb is there when ifs not and misfire nerves I can't remember the scientific explanation. But apparently meant to help. Try it if can't hurt holding a mirror to look at two legs again. Who knows if it will work for you.
I didn't realize phantom limb could be painful-I always just thought it meant you felt what wasn't there
I’m a BK amp, and like you, have had the same limb amputated twice (looong story).
A trick I learned in a support group was to curl the toes back on the missing limb, and hold them lifted for 30 seconds.
I know that sounds crazy, but in the vast majority of phantom pain days, this helps unbelievably well.
Give it a try.
It comes with a full money back guarantee! 😎👍
That sucks Jo and I really do hate it for you. Unfortunately I can totally relate to the pain that you are describing as I too deal with some pretty intense nerve pains in my residual limb. I hope that you see some relief soon from these painful episodes and that the nerve surgery you had is a successful one!!
Yeah. I’ve similar. I did make myself promise that next episode I’d go to the hospital for a scalene block or supra clavicular block
I'm 71 and just had a BTK amputation.
My phantom pain is present all day 😢
You may want to look into a clinical trial by a company called Neuros. They have created a nerve stimulator specifically meant to help with post amputation pain such as yours.
As an ak amputee, I feel your pain. 😊 My amputation happened when I was 16 and the phantom pain worsened as I got older (43 years now!). If this pain was constant, it would be the worse pain I have ever experienced. Many times I was told it was all in my head until I finally met someone that did help. Gabapentin works well for me. It doesn't take the pain away totally, but it is much less intense and around for a shorter time period. I hope for you that your pain will lessen 😄🌼🌹
I'm sorry it's lasting this long. I have a nerve issue related to my migraine disorder and i know it's not the same but when i get the nerve zaps it really makes me feel like I'm losing my mind. Yesterday i kept randomly getting painful zaps along my collar bone.
I have never had this issue.....
But I remember what they told me at pt rehab.
To park myself seated in front of a full length mirror and just relax.
I also massage my residual leg every morning and every night.
I give it plenty of love cause it's a survivor !
Im sorry you have to experience this!
Roll it around in a bowl of rice. My dad lost his finger and this helped him so much. He doesn't even get phantom pains anymore went away after moving his amputation around in the rice for 30 minutes to an hour a few times a week
I'm SO VERY SORRY you're having to deal with this. Especially because you can't see an end date with this. I can't imagine how hard this must be. I would imagine this could really play with your head and emotions. I wish you the fastest relief possible.
I’m so sorry Jo! I’ve only been following you for a short while and I don’t know the treatments that you’ve gone through thus far, but have you ever tried mirror therapy for your phantom limb pain? Some research studies have found that it’s helpful for some people struggling with phantom limb pain. I hope your pain improves soon!
Your not alone. ❤❤❤❤❤❤❤
Sorry to hear the pain ur in
Im so sorry you have to go through this pain Jo.
That pain is bad at times
I still deal with Fantom pains after 40+ years. It feels like a cramp in my toes or calf but I don't have anything below the knee. It's a very real pain!
Try massage of the limb. As a licensed massage therapist I have massaged amputated limbs and the amazing thing is. It helps the client so much. The say they feel relief and it lasts from a few days to weeks depending on the individual.
Ever think about pricking yourself with a pin? I'm curious about the phenomenon.
I feel your pain. Its indescribable. THC helps. In oil form is best but can be overwhelming.