Phantom sensation is WILD

The specificity of phantom pain is one of the most bizarre things I've ever experienced!
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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!
Amputation Story Videos:
Why Did I Lose My Leg? • HOW I BECAME AN AMPUTE...
How I Said Goodbye To My Leg: • COME WITH ME ON A GOOD...
Seeing My Amputated Leg for the First Time: • Seeing my amputated le...
Day in the Life of an Amputee: • A Day in the Life of a...
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[@Serenity_Dee]

residual nerves: "I don't know what's happening so I'll just send signals" brain: "they're sending signals, better interpret them as if everything is still there" bodies are weird

[@ZT1ST]

Brain: "I'm sure the body will do something about that itch at the bottom of the foot. If they don't, I'll just make it seem like it's itching more."

[@adde9506]

Macular Degeneration: Vision like Swiss cheese Brain: stitch it together like there are no holes! My Mother: CAR! Me: That's been there for half an hour!

[@-Teague-]

To be fair the human body isn't designed to have it's limbs missing 😅 It likes to be in one piece 😅

[@viddeliten]

Well if it was a computer (wich the brain kind of is) and you had an app for the printer and there was signal coming through saying its a paper jam, it's not the computer doing something wrong when it throws up an error message about the paper jam on the screen, even though you tossed the printer last week. It's the signals. Maybe the cord that used to go into the printer was just cut off and left plugged in, and how is that app supposed to interpret all that noise it puts in to the port?

[@ZT1ST]

@@viddeliten The problem here is, the computer isn't giving your an option to dismiss the error message, or say "Ok" - if you try, the "Paper Jam" error message pops right back up again, *despite* you *already* having disconnected the printer and threw it out. And the computer insists you do something about it before turning it off and on again.

[@madmax3897]

This may not help but, here I go. My leg was amputated below the knee due to a motorcycle wreck in 1968. It was anything but a clean cut. I had the phantom pains real bad and they hit unexpectedly and scared me. To reduce these you have to make a decision to never move that foot again ‘ever’. Focus on relaxing that foot and just don’t move it again. It’s a mind game with those nerves. I hope this helps you as much as it did me.

[@SepiaMaddy]

Dude, that is fascinating! It's great to hear that there was something that helped you.

[@Heller_215]

This can definitely help it’s what people do when they have chronic pain it’s a mind game I feel constant pain but I constantly tell my myself it’s not there and try to avoid negative thoughts that the pain is not going to get worse etc. and so I slowly get used to it sometimes theres worse days than others

[@jay_tripp]

My leg was amputated from a motorcycle wreck in February. The phantom pain and the physical pain are both very present. I can wait to get a prosthetic and walk again

[@ashrowan2143]

​@@mars7612nerves firing wildly is partly a mind game, because it is your nervous system going holy shit something is weird here and we don't know how to handle it so take this sensation because it's the best we've got (not exactly but roughly that's what's going on) and to an extent some people can mind game their way out of some of it, it's why mirror therapy works so well for some people but won't do a damn thing for others. It's because depending on exactly why your nerves are loosing their minds you might be able to trick your brain into reading the signals differently

[@joebeach7759]

I hear they tried this at either the Nayo or Cleveland Clinic about 10 yearscago, using mirrors. I was thinking of having a BKA after my 4th ankle reconstruction, and was looking at all the phantom pain research at the time. I ended up with just dealing with 7 years of incredible nerve pain until things started to turn around.

[@melissanicklin692]

Phantom itches SUCK. I have to scratch around the nub until I find the one firing off. I am glad you had a safe surgery. You've been in my prayers!

[@DavidC-pr4wn]

I had to either scratch or grab ahold of my wife's nub sometimes to help it stop. Lyrica helped but not totally. I really have sympathy for Jo, you and the other amputees.

[@powerWithinUs4055]

Try using a pack. The transdermal patch for drugs, works. Bad rap because people are over medicated. Tone it down. We’re not medicating an elephant. There have been deaths because patch for tooth extraction caused fatality. It wasn’t the method, it was the amount. Instead of drugs use an herbal remedy. Use a spent teabag, attach it to an area, secure with blue painters tape. Try apple cider vinegar on a compress. I’ve used just blue painters tape across a sore knee. Overnight, it felt better. Heat build up maybe. There are many country lore remedies, blessed internet is making available. Many teas for pain. Pain is inflammation. Inflammation is pain. Use things topically.. No doubt amputees have a hard enough time with showers, much less getting in and out of a tub. Would the pain resolve while soaking in epsom salt bath? If too much, make a water solution, use cotton pads. Attach to the skin with blue tape. Open hearts and minds to the miracles that await with sharing and love. Orrrrrr….the doctor will see you now.

[@andromedaspark2241]

Does icing it help? Or heat? Capsascin ointment like for arthritis? There has to be something. Accupuncture?

[@chesneymigl4538]

OMG yes! I didn't have an amputation, but I did have serious back surgery. A lot of the peripheral nerves were cut to get to my spinal column. I have a permanent numb spot over my right ribs and phantom pains/itch occasionally. It's maddening to scratch at a spot that feels like where the itch is, but as soon as you touch it, the nervous go, "Haha, Fooled you!" Immediately after the surgery the peripheral nerves were growing back and would just decide to fire off randomly. I'm sure it looked liked I'd been tazed by the Invisible Man.

[@Akashic44]

I had a complete abdominal hysterectomy. Every once and a while I still get phantom pains like im on my period. Also, most woman get “a feeling” and know that soon their period is going to start. Well, sometimes I get them and still get tricked for a second when I take note about me getting close to starting my period. Bodies are tricky.

[@deewells79]

I'm so sorry, Jo. I've been dealing with increased phantom pain this past week. It is absolutely the most annoying and awful thing. I wouldn't wish this on my worst enemy. Prayers for relief for both of us and any other amputee suffering with it right now, too.

[@kj3n569]

I'm dealing with this too, and you're correct; anyone who hasn't experienced phantom pain or worse, the itch, has no idea how bad it is. Like Jo said, the specificity of it is maddening, feeling pain in something that doesn't exist. Good luck and best wishes to you, I hope it gets better.

[@PataPtichou]

I meaaaaaan, not even just for 30 seconds to people saying "jUsT sToP tHiNkInK aBoUt It!!"??

[@deewells79]

@@PataPtichou, well, catch me on a bad day and I just might, LOL! 😂Yeah, the whole "just stop thinking about it" doesn't work for me and wouldn't work for them either. It always makes it worse, LOL!

[@KickstandOptional]

A persistent sensation I had for my first year or so as an amputee was the feeling that all the bones had been removed from my (missing) foot and the empty skin had been tied into knots. Very specific, very unsettling.

[@sylvar5816]

phantom sensation is truly a wild experience fr. When i was seven i had my arm amputated due to an accident that i was involved in and to this day, the feeling exists. It’s definitely different for everyone but to me, it feels like i everything i touch i touch with both hands. i don’t have two hands, but the sensation is so vivid that at times it can turn into literal STABBING pain

[@ElliottRodgers]

Hope you feel better soon Jo. ❤ x My regular phantom pain is as if I am wearing leather flip flops with wide leather across top of foot and it is to tight. 36-48 :hours post surgery in November 21 of my LBKA I had sandal sensations. Plus I felt a small smooth stone under the muscle beneath my thumb that foot would rest on. I wiggled my foot and felt the stone fall downwards and out back of my heel There was no foot, that was ash by now apart from tendons I donatedd to medical research. So no foot, no sandal, no stone ... Weirdness!

[@powerWithinUs4055]

Not following.,.it was. a stone, or the sensation that it was a stone? Had weirdness myself. Used lymphocare for the first time, for osteoarthritis pain. Use castor oil frequently, but to the front of the knee. Used this massage oil to the back of the knee, only a few hours, with a cotton compress. Next day, I had a fearsome itch, not the skin, no redness or swelling. Ohmigosh, as I itched this pea sized debris came to the surface. I massaged it, the body beautiful absorbed it away, I walked better. Whatever that debris was, it was getting pinched and referred, felt like a stone in my shoe, Looked up lymph nodes, lymph systems…omg. Who knew? If the nodes have hardened or atrophied, what was a helper has become problematic. Lymph drainage, therapieteuc oils with heating pad, focus, attention, massage. We are looking to doctors who are looking to insurance companies. Many times, answers are right in front of us. We’re letting graybeards with stock portfolios run things. Jo, and you, are turning the love on. You are sharing information previously only found between patients waiting to go into X-ray.

[@Katfancy40]

How did you donate them? It's confusing to me but very interesting. I developed many nodules on the nerves in my hand that was literally cut in half all the way down past my wrist. Also in the nerve bundle where my index finger was amputated. My hand muscles and tendons and nerves did something so bizarre that my surgeon paused the surgery to take several pictures and videos of what it looked like and tried to figure out how and why it happened. So, with my world class ortho/plastic surgeon from the Mayo clinic in MN put my "case" into medical journals which is absolutely awesome Incase it happens to any other person anywhere. My goal is to donate my body to be studied on because of all of the damage and how it was repaired over and over.

[@nnicollan]

I got some phantom pain just from watching this. Damn you're one tough cookie and i look up to you so much. I have my own health stuggles so it really helps knowing im not alone

[@bobcharlie2337]

That sucks. We're sorry you have to go through that type of pain.

[@vidheyaprem]

Hmm 😢 sending ya love ❤

[@lukewestwood]

Sorry to hear you had such a rough surgery Jo. Have been keeping an eye on your IG, and saw your last update. Hope the phantom pain calms down you soon :)

[@JimAllen-Persona]

Glad you made it through.

[@ShamelessFNGRL]

MIRROR THERAPY!!! I cannot stress this enough! MIRROR THERAPY is designed to help specifically with phantom pains! You might need a friend to help you if you plan on using the mirror behind you .. look into it! Hang in there~~💜

[@ShirinRose]

She's tried that already iirc

[@ShamelessFNGRL]

@@ShirinRose Aw damn, must've missed her vids on that :/

[@kirin1230]

From my understanding it doesn't work for everyone unfortunately :(

[@billdarling3870]

@@ShamelessFNGRL Damn. I was so hoping that would help her. I knew she had probably heard of it but I scrolled through the comments to make sure someone mentioned it just in case she hadn't.

[@Helen247]

What I came here to suggest as well, sucks to not have a way to make it better.

[@IguanaMom]

I hope you heal quickly Jo and have no more issues with it. In the end I hope it's all worth it. Yesterday I was tapping my foot along to some music. For some reason the thought popped into my head "I wonder if amputees ever have a phantom toe tapping sensation when they hear music?"

[@MeowCatReturns]

As someone that’s dealt with chronic illness, I know it’s super weird for strangers on the internet to offer advice so please feel free to ignore this suggestion. I was wondering if you have done EMDR therapy for your phantom limb pain? It’s usually used for reprocessing and desensitizing traumatic memories, but there’s also protocols for chronic pain and phantom limb pain. It’s fairly accessible (I’d find a certified clinician through EMDRIA), and theoretically should work (with the understanding that this is obviously a complex issue). I hope you feel better soon! I’m so sorry this experience has been painful.

[@daanwilmer]

Oh no, that sounds infuriating! I hope things start getting better soon.

[@tomstanziola1982]

I'm so sorry for what you're going through, Jo. 😢 You can complain to us ANYTIME you want to. We all love you dearly!!! 🥰❤️🌹

[@Alteisen_]

+1 :-)

[@jay_tripp]

Phantom pain is so specific for sure. My toes are being crushed between a steel wire and a pulley... I'm looking right at where the pain is... And I'm just looking at a couch cushion... Why can I not just tell myself that my foot no longer exists, therefore, the pain I'm feeling must also no longer exist. That doesn't work though. Still hurts

[@ashleyhoman2592]

My friend go for it. If you need to let it out, complain all you need. We're here.

[@kathyhowell9186]

I just had my leg amputated a month ago above the knee. I’m 63 yr old. Anyway I’m there with ya. When my phantom pain comes I message my stump. It seems to help. Unfortunately there are times nothing helps and it’s agony that you have to deal with! THAT SUCKS! So I know where your coming from. Just want to say I love your videos I’m learning from you. So keep up the info. And thank you😊

[@petragazan3399]

For me softly tapping around the tip helps..... left above the knee for 2 years now

[@powerWithinUs4055]

@@petragazan3399 Therein lies the answer, Petra. You’re using counter pressure,. It would be different for each person. Those boo-boo buddies, the blue gel that is covered with soft plastic, meant to be frozen until used. It might not go to the site. Maybe opposite side, different limb. Thing about acupuncture, and massage therapy, it’s a one-on-one that can get you thinking-trigger points, release. There’s something on Ted Talks about messenger cells. Also, NakedScientist has several podcasts about pain. Has to be the Brits, they’re not controlled by drug manufactures.

[@anthonythompson4110]

I had an ex who's dad lost an arm. I never heard about phantom pains until I met him. He is a great guy, but we were talking one time and he said his hand was itching. Then he explained it. I was totally baffled. Then I did some more research and was totally shocked. It is amazing how the mind and nervous system works

[@TAHartwick]

Thank you for sharing your experiences. The way that you describe your experiencing is so vivid that I can imagine the sensations. I hope that you feel relief soon.

[@babasooze678]

Phantom pain just sucks! 😢I was worried this procedure would kick it off to the max! I sometimes feel someone is stabbing me with a knife in my big toe & barb wire is around my ankle which both are not there. So you have my sincere empathy. ❤

[@TrashDoveBard]

I just want you to know that forb4 years I've been dealing with an undiagnosed chronic illness. I've had to have a lot of awful things done, and am having a spinal tap soon. I'm super scared of everything that is happening and sometimes I get exhausted from full body pain being a *constant* in my life, but your videos help me a lot and I appreciate them... I'm sorry you're going through all this. I saw your videos leading up to your surgery and having had 4 myself, with a phobia of anesthesia... I felt that. In my soul. You're amazing. I know that doesn't make the pain and insomnia go away but you are.

[@crazykittensmiles]

Nerve stuff is a nightmare. I get it on occasion. One is an itch that can't be scratched another is feeling like something is stuck between my toes (there's nothing) and another is burning pain. I feel ya x

[@phyllisreinking4208]

I think this phenomena would be a literal nightmare. Has anyone ever suggested hypnotherapy to try to derail the phantom sensations?

[@GryphonDes]

I so feel ya Jo, its hell trying to get to sleep at night thanks to the phantom nerve little party they keep trying, everything from "I need to stretch it/shake it/bend it" to every sensation I'd ever felt in my amputated limb (and probs some I never did) -- Keep on Keeping on! You are one of my inspirations!

[@rainydaylady6596]

I had surgery and i totally understand the phantom pain or in my case it was the itching where the nerves used to be. Sleep was a joke. Mine finally went away and i hope it gets better for you soon! 😒🖖💕

[@phoenixgate007]

Okay, I have chronic pain and I would take my worst pain over my worst ITCH any day of the week. There’s just something so awful about an itch you can’t scratch! I sincerely hope your phantom sensations subside and you are able to get some quality rest. Thanks for being you, Jo ❤

[@nikoteardrop4904]

F**king amen! Chronic pain here, working on five years, basically constant. Unreachable itches are still worse.

[@wdwerker]

Makes the occasional twinge of pain from my hips seem frivolous to mention. Relentless pain changes people and they have my understanding. I was lucky to get relief mostly.

[@MaxLSilver]

Yeah, I'm struggling with mine still, a month out from surgery. I overshare, probably, with family and friends because it's so specific. Feeling your foot sliding across the bed, or getting a twitch in your thigh that's not there (I'm above the knee) is just something. Thankfully, the gabapentin helps, particularly at night, for me, just not completely.

[@claritey]

I'm so sorry about that. I also have issues with phantom pain that have to do with specificity rather than intensity. Sometimes it feels like I have a papercut or a piece of wood lodged between my last two toes, sometimes it feels like my ankle and foot are compressed and turned around backwards, sometimes it feels like it's submerged in a bucket of ice up to the knee. Things that have helped me: 1. Eating a spoonful of yellow mustard or drinking pickle juice (anything with a lot of vinegar in it) It works because it triggers transient receptor potential (TRP) channels in nerves. It also helps with muscle cramps. Walmart carries pickle juice packets made specifically for muscle cramps. You can eat them as is or freeze them to make pickle popsicles. 2. Rubbing and stimulating the area around the scar. Using a tens machine and sometimes also a heating pad on the stump sometimes helps. 3. Running a bath with water as hot as you can stand and submerging your whole body in the water. This releases endorphins which are your body's natural painkiller. It also helps reset your nerves. 4. Use a CBD topical cream meant for muscle cramps. I have one that also contains capsaicin and feels like icy hot which helps to continually stimulate your nerves so you feel that instead of weird phantom sensations.

[@powerWithinUs4055]

Try keeping a jar of Apple Cider vinegar near the bed. Use cotton pads soaked in the ACV, apply to various spots. Could use overnight, use blue painters tape to hold. When I apply, I think of the pulse points I’d use when applying cologne. Close to surface pulse point. You don’t have to believe for something to work. But you do have to try it.

[@claritey]

@@powerWithinUs4055 As I mentioned vinegar does have a noticeable effect on phantom pain but I think it works better to ingest it rather than applying topically. It wouldn't hurt to do both.

[@jamic6351]

@@claritey changes the ph. It’s noticeable and fast acting. There’s a Bone Massage Oil made of herbs and tree barks, that shows promise, tinctures have always worked for me. IHerb has it. The skin is the biggest organ. Let natures tinctures work as rubs and soaks, ingest healthful teas, there’s lots of Vermont and Appalachia folklore remedies. We have to figure it out for ourselves. Fortunately, we’ve got information sharing internet.

[@MarysArtOnWheels]

I'm so very sorry it's that bad! 😢 I hope it's calming down soon! But I know that after one flare up means before the next one and I know it sucks sooooooooo much! I'm not an amputee, but I have a scarred spinal cord and get phantom sensations, mostly like the itch you get from a hair in your shirt or tiny moving bugs like ants on my skin. Extra bad as that's also a trauma trigger! Sometimes I can cope, sometimes it need hours to make it bearable and sometimes it's a sleepless night trying everything in my power to keep my sanity. It sucks and there's nothing I can do, my scar is inoperable. We're heroes! Keep going, you're amazing!

[@downingj8288]

I never knew how specific the pain could be. You do a fantastic job describing it though. I hope you were eventually able to sleep

[@TheJoolie]

I hear ya. I lost a couple of fingers 9 weeks ago, and the phantom itching in one of them is absolutely insane. Or sometimes I feel like it’s throbbing…when it first happened, I felt like everything was twisting and wouldn’t stop. The brain and body are so so weird.

[@afriefeld1]

I am an artist and use art to manage hard stuff. What if you drew a picture of yourself scratching the spot? I know nerve pain is really complicated and hard and hope you get some relief!

[@nyn1966]

For the last several weeks, I've experiencing weird nerve pain, in my left BKA. It hits me between my 3rd and 4th toes. It's not constant, so when it stabs me, I kinda jump and mumble #@$% Jo, I hope this surgery ends up helping you. I know the phantom pain is NO JOKE! Stay 💪 strong girl! We've got the fight in us!!!

[@genuineimpulse9134]

As a massage therapist we are taught 1) if the right foot is too wounded to be able to work on, working on the non- injured side does help. That helping one the mind will mirror that to both sides of the body. 2)when working with an amputee, to still work on the removed, no physically present limb. To use reiki Or energy healing in replication of what was done on the opposite side.

[@HarryDunlopClark]

I doubt you will see this comment, but I really hope you do. Look into Tapentadol. My mother had her full leg up to the hip amputated due to cancer, and phantom pain ruled her life after surgery. To the point where she didn’t want to be here if that’s how she had to live. She tried all the normal medications for nerve pain, but was then put on Tapentadol and it entirely changed her life. Completely gave her life back to her. It’s not a very well known medication at all; even some pharmacists haven’t heard of it. But super worth asking a pain management doctor about.

[@eddavanleemputten9232]

I’m so sorry you are having to deal with this! I was wondering… in Europe, phantom pains are often treated with … antidepressants. Weird, but it often works. Especially for those post-op flare-ups. It’s nothing to do with having depression. Doctors simply discovered that a side-effects of a mild dose of anti-depressants can vastly reduce those phantom pains. They block the brain receptors that also interpret the phantom pain signals sent by the residual limb. It takes a week or two for the meds to kick in, but then gradually you start feeling the benefits. After some time, you can wean yourself off them (following a protocol the doctor also prescribes). The gnarly part is that such a treatment usually isn’t started until around 3-4 weeks post-op, and it takes 2-4 weeks for the meds to take effect. But relief from phantom pains, especially at night and even if it’s not 100% complete, is something so many patients literally cry for. Sleep deprivation is not good for healing. We all know that. So I thought I’d just throw it out there. Healing hugs from Belgium. 💖

[@qaphqa]

Love and solidarity to you.

[@thinkforyourself1357]

I myself have a lot of health issues, both mentally and physically. Every time I suffer through another procedure or try and deal with the consistent pain or I just feel like I can’t take it anymore I go to your channel and I watch your videos especially this one. You have suffered so much, for so many years, and even if it’s a mask, like the one, I wear all the time, your cheerfulness, graciousness, and sheer determination always help me out❤ you are a truly awesome

[@roxiegs348]

I have heard that phantom pain or phantom feelings can be torturous. I am so sorry. Complain all you want.

[@louiseallen5298]

Total respect. You are so brave. I send healing wishes❤

[@Sunstreaker2k5]

It sucks that you're dealing with yet more hardship from the surgery, and I really feel for you. I know what it's like to not be able to sleep no matter how much you need to or how hard you try. I hope in the long run the surgery gives you the relief you've been looking for but I also hope in the short term, your body adapts and you're able to rest and recover fully without more complications.

[@emilala9049]

I have paresthesias in my feet for reasons they haven't figured out yet. I totally understand what you mean about specificity, sometimes it feels like my socks and shoes are filling up with sand, and it's so real that when I take them off I'm legitimately expecting sand to pour out of them, but there's no sand and so nothing I can do about it. Or when my feet get cold it feels like there's little chips of ice melting in between my toes, but again, there aren't and so there is nothing I can do. Hope your phantom leg feels better soon, because it's little stuff like that, that just drives a person nuts.

[@MissMage1918]

I had heard from another amputee youtuber that mentioned phantom pain. He mentioned mirror therapy where you lay a mirror to show your one leg to the mirror as if you have both. Then itch the spot and it might trick the brain to "itch" the other. If you try this, I hope it helps! I do hope your nights have better sleep.

[@mplussant]

…WHOA!!!…nubbin mind games!!…COOOOOL!!!

[@mistykivett44]

I was going to suggest this too. Also magnesium and B vitamins are great for nerve things. Hope you feel better soon! ❤

[@mplussant]

@@mistykivett44 …great advice!…also, don’t get mangled by a truck…

[@katiep9439]

She has already done lots of mirror therapy

[@mistykivett44]

@@mplussant Noted. 🤣

[@animatedaboutlife]

Im sorry you have to go through all of this. I cant even imagine feeling phantom pain or itching like that. Hope your healing is going well. ❤

[@cfoley6489]

Get a mirror. Hold it up to your whole leg. Make it look like, visually, that you have 2 legs when you look down. This is very important! Reach down and scratch the ankle that is actually there, but look at the reflection of the phantom "ankle". Your brain will STOP the phantom sensations.

[@jamic6351]

I think so too…give the pathway what it wants. Easy therapy is…take pj bottoms, knot the bottom leg, fill with loose fill. Easy to draw on, just slip in. Might take time, a few nights. The body sees an extended leg. Use pool noodle, the length a leg would be. Ten dollar dressing mirror stays in the bed frame. Use rope lighting. Doesn’t overheat, it’s visual cue. I’m curious, when puppy dog is lying nearby, is there pain? Jo had me talking to the screen when she panicked because she couldn’t find her leg. Ummm….dog. Where is my leg? We’re not using dogs enough, MS and Parkinson’s people fall. Dogs anticipate. Work with that.

[@raulreyes5164]

Hello Jo I'm 61 and it's been 3yrs since I lost my leg due to diabetes I do reflect so much of what you talk about anyway you have been such a positive role model for me I've never had any sorrow for myself I've just went on with my life to the best of my ability thank you for being a voice.just remember WE HAVE A LEG UP ON EVERYBODY ELSE 😅😅

[@benjaminchalker6366]

Dude you are fuckin badass, you walked into a hospital and walked out the fucking terminator 😅

[@thecraftycyborg9024]

I have severe full body CRPS (degenerative neurological condition that caused all kinds of issues but is famous for the extreme levels of pain it causes). I get the WEIRDEST feelings at times. Sometimes, it’s barbed wire wrapped around me, bees stinging me over and over, being stabbed with hundreds of knifes, or, my personal second-least favorite, bones being crushed by a pickaxe. The worst, though, is the feeling of having your skin peeled off, dipped in gasoline, and lit on fire. That’s the most common and famous symptom of the disease, so almost no one escapes that one.

[@simona_sigmund1001]

The brain is wild 👀 sometimes it's our own worst enemy too 😭

[@avinashsharma9382]

You don't know dear ....how much strength I get from you .....U r an inspiration for me .....Thanks Jo ❤

[@Toad_bonk]

I think that would drive me nuts. As a person who struggles with sensory things such as itches I would hate it so much. Much respect to you for being able to handle it

[@chetubetchaIII]

Oh, man, this is something that people just can't grasp -- just how SPECIFIC the pains/sensation are. Hope your recovery progresses well.

[@brn8481]

OMG I always thought I was so weird doing/thinking these things, but this makes me feel so validated. Love your content and it's been helping me realise how to understand myself ❤

[@austin5407]

I just had a rotationplasty and am so grateful I was able to keep my ankle and foot. The amount of phantom pain I have is quite tolerable with my medications. I could only imagine losing everything. Phantom pain is WILD

[@banksiasong]

Must be incredibly frustrating not being able to rub, scratch or put a cold pack on. Thank you for informing us about these details, and my best wishes to you for your continuing recovery and rehabilitation.

[@yamilcoloma6677]

hope you get better jo, I had restless leg syndrome a couple of times and it is similar to what you are describing. not the missing limb part :P but the annoying sensation that does not allow you to sleep. its horrible

[@careya]

It’s so awful. Kept me up many nights.

[@williampeytonjr8635]

Hi welcome back 🎉what I do is relax because I really don't like pain meds.

[@yomogami4561]

complaining is fine jo. that's why we're here for you. best wishes & hugz

[@elin2962]

I have no idea what it must feel like going through what you are going through... But you have my heartfelt thoughts and prays that you will get better and feel better soon❤🙏 I follow you cuz you inspire me and give me hope for humanity! You are so strong and amasing! Best of wishes and lots of love❤

[@TheKjoy85]

I understand dealing with permanent nerve damage. I had surgery to remove a cancerous tumor from my lung 8 years ago. They went in through my back and the nerves on that side didn't heal right. When I touch my side or the front of my ribs on that side, my brain tells me I'm touching about 2 inches closer towards my spine than I really am. My incision did heal quite right either and hasn't faded much in the last 8 years. It drives me nuts when the skin itches or hurts and the irritant isn't where my brain is telling me it is.

[@julieplummer6611]

Jo, if anyone can push through this, you can! Uber impressed with your bad ass attitude.! Love from the UK .X ❤️

[@sharonblevins3281]

Hope you feel better soon 💕 Praying for your healing 🙏

[@stokesstittjr624]

So glade you are back I’m hoping for the recovery you want.

[@theresakelly4609]

You go ahead and complain... I don't mind and I am so interested in what you have to say. Thank you for sharing. Communication and education for all of us is what you are doing. Really thank you!!!

[@tondriasanders6306]

I get phantom uterine pain. Cramping, contractions, pressure, you name it, I feel it, and I’ve never met anyone else who experiences it. Hearing your description makes me feel less crazy, weird and alone. I hope this surgery helps elevate your discomfort in the long run 💜

[@tedwalford7615]

Wishing you full healing soon.... So sorry!

[@jamespatrick727]

Stay strong Joe. Mind over matter is how I get thru being a double above the knee Amputee that walks on c4 legs with nothing but occasionally need ibuprofen. That pressure sucks but yep keep doing things n keep ur mind off it.

[@manonelvera]

Jo you can always talk to us about the things you feel and experience. It is not complaining. Because that sounds like it is something bad. And it is not. you are just venting your emotions. Not complaining. This is what someone told me, and I have chronic pain. So please keep talking about what you feel.

[@katherinewolfe]

That just sucks, Jo. I hope it clears up soon. I've had phantom pain and I couldn't have possibly slept with it.

[@kortaniijohnson512]

My mom had her leg amputated (sadly she passed a little after the surgery) and during the short time she was still here after the surgery I remember she always had the complaint that it felt like there was a hair tickling the back of her leg. She did say she had pains from time to time but the number one sensation she felt was the tickling feeling and it drove her nuts because there was no way to "brush the hair away" because there was no hair and there was no leg.

[@stephaniec4614]

I’m sorry to hear you’re experiencing phantom sensations. A very long time ago, I saw something on tv (so of course it’s true lol) addressing this. They mirrored two sides that met at a corner on the inside of a box that was open on top. Then the patient placed their extant limb in & looked down into the mirrors. Voila! Their brain “saw” the missing limb. Scratching it while looking at the mirror eased the phantom sensations. Don’t know if it works, but is interesting. Try it for us??? If it works, jeepers, score! If it doesn’t, then you’ve debunked it. A score, too, just not as cool. Anyhoo, good luck & keep going. ❤

[@Mateogrg]

My phantom “sensations“ (nothing compared to the pain I had before amputation) have been reduced by setting a mirror so I can see the end of the stump. Then rubbing the end. The thought is to retrain your brain that you have no foot left. Also I found that cannabis eatables help greatly especially at night. Wishing you relief.

[@TrustMe55]

I have a friend who is going to go through an amputation due to diabetes she’s in her 60s like me and it’s amazing that I came across this I was instantly interested because I wanted to understand what she was going to be going through thank you for sharing

[@henaperween3714]

I can’t even imagine going through something like this😢 I pray for you dear and you are very strong

[@lilatnlups]

Omg! Can't imagine . Brave brave woman. ❤😊

[@kaitlynjefferies2843]

Jo, my mom had an amputation done as well. What she does that sometimes helps with the phantom itches is she scratches where it used to be and it seems to trick her mind in to thinking it's taken care of and it stops sensation.

[@ardrek_]

You have amazing resilience! Truly in awe

[@videogamefaith]

I've had 9 knee surgeries now. It started with an ACL and then ACL repair but then a freak accident caused my knee cap to explode inside my leg and my resulting fall broke my tibia. I was given a 90% chance of losing my limb because it was so messed up. They saved the leg but there are many days where I wished they would have taken it. I have pain too, I don't have a lot of feeling in my leg. I have had deep cuts/gashes that I didn't know were there, I burned my skin recently on a hot water bottle that I put on there, and yah. Morbidly your videos help remind me that the grass isn't always greener but I hope my story gives that in return. I have a leg, I can walk, most days, and half of those with a limp. It just sucks. I'm sorry. I feel you.

[@SigneofHorses]

That’s insane! Thank you for explaining this.. I have no idea.

[@MsMookalate]

Thank you for this. I love the education from experience. It's really insightful.

[@bishplease4363]

Omg yes! I feel my leg and foot more now than when I had it. It's crazy.

[@anitadean4092]

I had my amputation,above the knee. Sometimes I feel the pain in my toes that I had before surgery. I yell at my brain to leave me alone. There’s nothing there. I pray no one calls a head shrinker on me. Lol😂

[@fromthenetherlands]

You are so powerfull! So honest and also strong. It must be really really hard. Thinking of you here in Holland! ❤❤❤

[@yaboidspdadon5838]

I feel ya on that note it’s really trippy I can but can’t ignore it

[@hecb87]

You can complain at any time dear. I'm here and I hear you

[@crashde5995]

Omg!!! I love you!! Please keep posting!!! You are helping me so much!!🙃🤗🤗🤗

[@kimlorton3002]

A long time ago, like the 80’s or so, they did a really cool study on phantom limb pain. They figured out if they used a mirror image of the missing limb, using the full limb, and then had you scratch the the full limb area that hurt, that corresponded to the area on the missing limb pain or itching, scratch it, rub it, rubbed it, they found that it seemed to really help relieve the problem with the phantom limb pain, itching etc. not sure of the name of it, but I know they did it because it was on 60 minutes at the time. Look it up and try it, can’t hurt! Hope it does help!

[@PixieyDust]

I am so sorry your surgery went so badly. I was hoping you would have a better time. I hope you can get some rest hon.

[@The_Mimewar]

Right there with you! Amputee as of January. Sleep is ROUGH

[@dvfd1874]

I know the feeling Jo but you’ve got this just remember to stay positive no matter what. Keep a positive outlook

[@Torania87]

Sending love and good vibes! I hope you feel better soon! ❤

[@jenmike042806]

Nerve pain sucks. I have Cauda Equina syndrome and learned this week I also have complex regional pain syndrome, also known as “suicide disease” bc they say the pain is worse than amputation (only by one number) and more painful than kidney stones or birth etc. So I feel your pain and frustration! Jo you are a #warrior and u got this-hang in there!!!

[@krisdiane]

Girl, I can only imagine how bad this is. 😭 I had a rib removed in 2017, and the recovery of that surgery was the WORST of the many I've had. My chest would burn and tingle with little zaps to the point that I couldn't stand it. It felt like I had sunburn and was constantly being lightly brushed with something and also shocked sometimes. It drove me crazy and kept me awake and it lasted for weeks. I've still got numbness from it and I get stabbing pain right where the rib was cut. I hope this surgery is worth it in the end, and I hope this pain doesn't last much longer. ❤❤❤

[@PataPtichou]

Nerve pain are the worst, I don't have phantom pain but I had nerve pain from my disease (and surgery) for years, I tried around 10 different medications, the day we finally found the ONE, gosh, it was the best! Right now the nerve pain is better and I have a lot of side effects so I stopped it 10 days ago, and I’m in withdrawal, and withdrawal symptoms are pretty horrible but I'm still so grateful with this medication. I'm so sorry you have to experience this, I think a lot about you and I hope you'll get better soon -at least to the point you can go with your daily activities "normally". This is my case now after more than 15 years of struggle with pain, of course the pain is still here but it's manageable and I can cook, shower, go grogeries shopping, do little tasks around the house, etc.. and it’s a wonderful feeling to feel more independent

[@mockturtle1402]

Jo! We are strangers, and I have no idea what you are going through, but you have enabled me to help my brother through a "n minor" amputation, and I am with you through this ordeal. Take anything my nonsense can help you endure. And if it's nothing, then enjoy my cheers from the sidelines. 💜

[@karinoshea3330]

I overhead a nugget at PT that might help. If you have a phantom pain or itch, try scratching/massaging the air where the body part would be, sometimes the brain accepts that and the sensation will go away. I really hope that helps someone, somewhere! Much love from Oklahoma!❤

[@toyyatoy]

Crazy, hope you feel better!

[@flyinrhino1]

I have read that when military vets were treated for phantom limb pain or other sensations they used mirrors to reflect the missing limb to look like the opposite limb. Then the had the patient scratch / stretch / or massage the limb like it was there and it tricked the sensations into going away or minimizing them it often worked better with multiple sessions.

[@chuckg2016]

Yeah, I can relate to the tingling, burning, cramping, & stabbing pains in feet and legs from nueropathy.