Amputee PHANTOM PAIN and SENSATIONS PART 1

[@TheCuriousOrbs]

Chris, firstly, thank you so much for your uploads, I've gained so much knowledge and understanding from the topics you've been presenting in recent years. I'm currently 8 weeks post-op from losing my right leg (above the knee) in a motorcycling accident. Ever since I was taken off the in-patient, hard-core meds (ketamine/morphine) I've been suffering from symptoms you've described in this video, namely the tingling and sharp lightning bolt sensations to the missing foot you described precisely. I'm on a mix of Lyrica/Targin (Opioid) & most recently Endep (low-dose antidepressant) but still, struggle to get a solid night's rest. Interesting to hear your view on the Opioid option and will discuss this with my GP on my next visit. I took myself off them several weeks without back without weening properly but suffered immensely as a result. What sort of timeline followed your recovery to where you are today?

[@theampedlife]

Hi David, thank you for your kind message earlier today. It is my pleasure to do these video’s, and reading a message like yours makes it all the more rewarding and meaningful. By you participating in our discussions you are also helping others - someone is going to benefit from our chat here, thanks for that. I’m sorry to hear about you losing your leg, I hope that you find your way through this and that good things await you in the future. I have learnt that taking one’s time, being patient with discomfort and trusting that we will learn to manage our changed bodies, life can improve, and even be rewarding beyond expectations. About the opioids - I went through a radically bad detox when I stopped taking oxycontin. As you said, it’s a terrible suffering that I wish upon no person. That is not to say that it does not serve a purpose, but I see it as an absolutely last resort. I would suggest a discussion with your doctor about a pain management plan, but I think a measure of discomfort is normal and to be expected for a while. Having said that - we are all different with unique needs. My phantom pain was bad in the beginning, but it reduced in a fairly short time. Within about 2 months it lessened and by 6 months it was gone, with only an occasional stabbing pain. Hang in there buddy, and make sure that you have the right emotional and physical support to manage this time. The choice of prosthetist and the right gear is crucial, I cannot stress this enough. I learnt this the hard way, you can avoid it by being assertive and informed from the outset. I also struggled with sleeping in the beginning. Eventually I went on medication called Truvalin (25mg only) which helped enormously. One tablet in the evening. Its a sedative, non addictive, and stopping was easy. Perhaps speak to your doctor about this. I wish you the best, keep in touch, we are here to support each other.

[@TheCuriousOrbs]

@@theampedlife Thanks again Chris, really appreciated. KZbin is great like this. A problem shared here today will inform and support others for years to come.

[@garylaver4614]

Hi Chris I am 10month left leg above knee amputee ,I was a keen mountain biker ,swimmer and just started kayaking and bushwalking before loosing my leg to a drugged out meth head while unloading my truck ,all I heard was a crash and as I fell to the pavement I felt this sensational burning pain to my right leg which had disappeared,to my luck a couple guys put a torneque around my leg and saved my life .4 months ago I went cold turkey of my drugs and found I was waisting my time taking them .I still have the weird sensations but been able to block them out of my head so far ,I’m hoping to get a much better leg next week to trial so I can get back to doing what I enjoy. I’m 73 and still got a lot of living to do ,I have just found your site and will be watching with great enthusiasm 👍Gazza

[@theampedlife]

Hi Gazza! Thanks for your wonderfully positive message - there are so many helpful shared experiences in it which will shuttle motivate some watching and reading this. It certainly inspires me to live well, I am 56 and realise there is a lot of living to do if you are able to live so fully at 73. Thanks for the motivation! I can't imagine what it must be like to have someone loaded on meth causing your situation, but I have so much respect for how well you're dealing with this. Your message will make a difference to someone's life, thanks again for putting it out there. All the best for '23 mate!!

[@peterroberts2737]

I'm 75 , alway been active outdoor type, also love kayaking. Unfortunately now facing a full leg amputation. It's a great help hearing other people who have already gone through the process talk about their experiences, can't imagine not having a leg but it's something that's going to happen.

[@hanskonrad5850]

Hello my fellow Trans femoral.. I get the electrical charges about every 2 or 3 months ...as soon as I feel one hit i take 800 to 1k MG of ibuprofen and 1 hour done deal no pains . This is the only issue I have...I do deadlifts with dumbells and always try to feel the residual limb muscles Fire and get a good pump ..I know I kicked ass when the socket is tight after leg day ! Blood flow seems to work for me for scar health ...hope this helps someone and keep sharing ideas and experiences! Very fortifying!

[@theampedlife]

Hi guys - this is PART 1 on this topic. I have a lot more to share - please look out for uploads over the next month! Please remember to subscribe for notification.

[@rysammy]

Yes, I can take ibuprofen. I had a TMR surgery last month on my stump, I had a stump nueroma on my sciatic nerve removed as well which was the size of a roll of quarters. I have had some crazy sensations after surgery, which I cannot explain well. I cannot wear my leg for 8-12 weeks and at week 6 my psaos muscle tightened up so much that it pull my L3 vertebra out pinching a nerve causing extreme pain, I had to get a shot in my back to relief the nerve.

[@opinionminnion]

Very nicely done presentation. As an amputee of 44 years, I agree with all of your suggestions. 'Love your stump' is advice I give to fellow amputees regularly. Recently I have been exploring the emotional side to phantom pain, and believe that my underlying feelings cause or at least exacerbate my phantom pain. I have come to believe that, as you say 'embracing' the phantom pain instead of fighting it a good approach. My views on medicating pain are similar to yours. (Especially long term medication for pain relief!) I think the reason why many people do not embrace their pain (amputees and non amputees) is their lack of awareness, or willingness, to explore their own feelings. To be really optimistic (and maybe a bit philosophical) maybe phantom pain is a doorway to a better relationship with ourselves?

[@theampedlife]

Hi Mark, i completely agree. I believe that I needed a "crisis" of some sorts to change my perspective on how to engage life. I feel that self-awareness is our ultimate gift, if we choose to pursue the relationship we have with reality - with all it's difficulties and beauty. I like your philosophical approach, I have also found value in this process. I also think that it is true for both amputees and non amputees. I'd also like to acknowledge that everyone has their own experience in this matter, with it's unique and similar facets. Thanks for participating in this conversation!

[@edwigcarol4888]

There is one thing what I read is that the last message a brain gets from the limb may NOT be pain (pain memory). So sedating the limb long enough before the surgery..

[@garylaver4614]

I agree with your comment I found when I went onto a carnivore diet my pain went away I felt much better I gave the drugs up found I didn’t need them but when I start eating wheat products I get some nerve shocks.

[@scruntbottom]

Great advice.My experience of phantom pain led to addiction to painkillers.Am now drug free thanks to help from an hypnotherapist. When I am anxious the pain starts, so I was taught how to relax “go to my happy place “.Now any pain signals that I’m anxious about something, a useful and positive thing. Thanks for your great videos.

[@theampedlife]

Yeah those damn painkillers - was a blessing in the beginning but my demon in the end. Thanks a ton for commenting, and for your encouragement, it makes it all worth while!

[@wynncarter6783]

Thank you so much Chris for all this information on Phantom pain and sensations. I can relate to so much you've discussed. So much good advice you've given here. I'm going to share this information, so others can benefit from your informative video's. Look forward to the next!

[@theampedlife]

Hi Wynn, again thanks for being a part of this conversation. I really value the privilege of engaging with you and fellow amputees, and for getting some sound, helpful advice in return. Also thanks for sharing the video, I appreciate your support for this channel!

[@trip2kat]

As a 28 year AKA, I have had phantom pain since day one. It feels like pins and needles pressing into the bottom of my right foot along the heel in the soft tissue. I was on a low dosage of an anti-depressant for a few months after the surgery and it lessoned the pain and took the edge off. I always feel the sensation (a 1 to 2 on a 10 pain scale) but it doesn't affect the quality of my life. However, preservatives and MSG in foods will affect my phantom pain tremendously. It will take about 8 hours until the food has gone thru my digestive system (probably in the large intestine) before the sensation ramps up. Sometimes it like a switch and the sensation goes to say a 3 to 4 say. This is tolerable but shortly thereafter there will be a shooting pain down to my stump resulting in a muscle contraction which hurts like a needle shot. It last for a second or so. This occurs about 2 times every minute to once every few minutes for hours, sometimes 6 to 18 hours. It basically ramps up then down. So It usually happens at night when I'm asleep and I fight it until I can't sleep and get up usually in the middle of the night. I am very careful what I eat. I read food labels and eat alot of organic food. There is definitely a threshold and sometimes I "roll the dice" and pay the price. I started documenting my phantom pain occurrences a few years ago. Sometimes I'm not sure if it was food or maybe the weather as my wife believes but I don't think so. Last year I had 21. In 2107 - 15. I write this to help other amputees that may a similar experience. The important thing is I have most of the control and I know it will pass.

[@theampedlife]

Hi Andrew, thanks for sharing your experience and suggestions. I have also experienced the "needles in the stump" feeling. It was the worst form of PP I felt. I have never considered the direct impact of diet on PP, only as a contributing factor to weight loss or gain. I will certainly discuss this with a physician and dietician to gather some more information on this, and then pass it on via this platform. I also love the idea of keeping a "pain journal" and to establish links between diet, mood, weather, activities, emotions etc to assist in managing PP. I also love your philosophy on control and the passing of the experience - thank you for that. A great contribution and valuable tips - thanks a ton for this!

[@TheCuriousOrbs]

G'day mate. It's a few years since your post but would really love to hear a follow-up on how you've been doing? I'm struggling with this issue at the moment and find it extremely interesting what you said about the dietary triggers. Something I never even considered until you mentioned it.

[@alwayslearningthankyou2708]

Thank you for clearly explaining this. You have become a valuable resource to the amputee community.

[@Brvfan2012]

Im just 3 weeks into my amputation so I have a lot to learn. Phantom pain is bad some days so wanting to learn anything I can about it. Thank you for sharing your experiences and helping me understand it better

[@theampedlife]

I’ts a big pleasure to be able to help in some way, I appreciate your feedback and sorry to hear you’re struggling with phantom pain. I too had severe issues in the beginning but it got better the more active I got. I just needed to push through and hold on to the belief that it will get better. All the best with everything, also consider joining our live streams and asking any questions real time, the community are great with feedback and suggestions. Hope to see you there, take care

[@kansaskajun]

Chris, I’m a bilateral BKA living in the U.S. I’v been an amputee for many years. I still on occasion have phantom pain, mostly electrical types shocks as you describe. WhileI I’m on low dose opioids for a completely different reason I totally agree that opioids do absolutely nothing for phantom pain. I do take Neurontin which does help somewhat but nothing completely eliminates phantom pain for me. But as you said everyone is different. I know amputees who have no idea what I go through as they have never had a single phantom pain. I do like your channel, best of luck. Ken

[@theampedlife]

Hi Ken, thank you for your message, as well as for the supportive words. Is it not amazing that for some amputees phantom pain is non existent? It's such a deserved let off - to deal with the loss of limb, as well as on-going pain is something I wish on no one. Im glad to hear you agree on the opioid issue, Ive seen so many amputees struggle with addiction over the years as a result of an opioid based pain management program. Please continue to comment on the platform, it ads to the conversation, and a struggling amputees do say they find value in the things we share. All the best!

[@georgiamackinlay5706]

Have you ever tried Low Dose Naltrexone?

[@RicoResolves]

This is fantastic to see. How you share your experience, thoughts and everything with the world and/or fellow amputee. Keep it up sir, you're doing a fantastic job!

[@theampedlife]

Hi Rico, that's a ton for your kind and motivating words! Your message inspires me to keep on filming and uploading, I really appreciate the time you took to send it. All the best from SA!

[@rysammy]

A TMR surgery on your stump is worth checking into, I had one 6 weeks ago at almost 3 years post aka. First time for relief in 3 years. The Cleveland Clinic performs the TMR surgery during 90% of amutation surgeries

[@theampedlife]

Thanks so much for sharing your idea and experience. I must say I very rarely get phantom pain now, and when I do it's for short time only. I hope someone finds you suggestion useful and it makes a difference for them. Phantom pain is such an obstacle to freely engaging life again as an amputee. I rarely take any painkillers, like maybe once or twice a year, which is a great relief. Pain meds almost destroyed my life.

*I am 29 years old and am a legless at 3 years old*

[@theampedlife]

I'm sorry to hear that Thanh, thanks for watching and leaving a comment!

@@theampedlife hehe

[@PayItForward21]

Was it because of a congenital deformity or trauma if I may ask? Hope you are living a great life 🩵🩷💜

[@jeannie2548]

Chris, I hope you are still reading these comments. Have missed you on here 😔 Thankfully these videos are still up, I watch them often. Many blessings!! Hope you and your family are well. 🤗

[@theampedlife]

Dearest Jeannie, Im so sorry I missed your message 6 months ago. I was traveling at the time and a little lazy with my social media ... my bad! So we're back for a new season of video's, as well as live streaming starting soon, please join the chats and share your thoughts! Thanks for motivating me to keep on making new video's, your kindness and caring words are much appreciated ☀️😊

[@theDanielTruth]

Hi Chris, once again thanks for a great Vid. Yes I've also had the phantom leg present since my amputation a month ago. I'm still in hospital and using Larika which completely remove the phantom leg for periods of the day, but once I get home, me and the Mrs. Are going to try the mirror therapy together, see if there's any results, as it does not necessarily work for everyone. Glad you listed out some other great suggestions too which I'll certainly explore.

[@TheCuriousOrbs]

Hey, I was going to ask if anyone here has tried mirror-box therapy. Are you able to post an update?

[@rysammy]

I am an aka and my stump is always on fire, like it is in a red hot skillet. It will even get worse with a little bit of swelling, so wearing my shrinker does help with that. My cat laying on my stump helps my pain unbelievably. I am 2.5 years out from my amputation. I am considering a surgery called TMR, which is suppose to take care of the type of pain I am feeling in my stump. That is pretty bad when the pain is more disabling than the loss of your leg. I also have to get serious about weight loss, need to loss about 50 lbs. Take care people, not all people fall victim to opioid pain medication, but used over time opioid pain medication makes the pain worse.

[@theampedlife]

Hey man thanks for your comments and for sharing your experience. I'm sorry to hear its so painful, it sounds like a little pressure and warmth helps? I found that soothing movement on my stump skin like running a hairbrush over it softly or even just gentle rubbing helped. At one stage I used something called an APS device, which sent light electrical impulses through the skin. It soothed it somewhat. Arnica oil really worked well with bruising and sensation reduction. Ultimately timed care healed everything. The weight was also my biggest issue. I lost 15 kg which has made a big difference. If you don't mind please let us know how things are going and when you find it's getting better. Any suggestions are so helpful. Take care!

[@rysammy]

One thing that has helped a lot was going to a skin fit socket, the pressure from the liner was a large issue from being pretty tight. Wearing my leg also helps with the pain, but nothing really helps when the atmospheric pressure goes up. I will be in touch and thank you for your video!

[@k.p.5736]

Lost my leg in 1989 phantom pain is still a large part of my life sucks so bad ; it’s the worst at times . There’s one medication me and my doctor found that helps , like right now my big toe feels like it was run over by a garbage truck and I don’t have that toe .

[@theampedlife]

Hi KP, wow that is a long time to deal with phantom pain, but glad you found something to ease it. Do you mind telling me what it is that works for you? (liked the garbage truck image, thanks for the smile! Great that you still manage the humour in this situation) It's so strange when the pain comes, and the specific part of the limb is no longer there! Thanks for the message, I think many people will be interested in what medication you use.

[@k.p.5736]

@@theampedlife thank you , it’s a medication I don’t like saying due to the name but I can tell you if helps someone else because phantom pain can be vicious at times . Doctor gave me methadone 5mg twice a day that medication told phantom pain to back off it was incredible to be able to sleep while your missing limb in your head wants to play. I can feel every cut etc in a keg that’s not there cut my foot in that leg real bad as a child and I feel it talking about it right now phantom pain is wild . Best part it’s a challenge that’s a plus . 👍

[@theampedlife]

@@k.p.5736 Thank you for being so open with the information, hopefully it will help someone else. I am familiar with Methadone, it's used for many reasons, but was not aware of the use as relief from phantom pain. Especially to be able to sleep again! I love how you sat the challenge is a plus, such a positive approach. Awesome stuff - hope to see you in our upcoming live streams!

[@k.p.5736]

@@theampedlife Doctor and I tryed several things before settling on that . My phantom pain at beginning was a nightmare . The Mayo Clinic did a procedure that slowed it down a lot . They put a I believe was called spinal tap paralyzing me from the waist down for two weeks. When that two weeks was up I able to start my life it worked so that’s another option if it’s real bad.

[@weedeatnogreweo7574]

I've only been a amputee since October 5,2020 (now 1-21-21). My stump, whom I named Betty as soon as I woke from amputation still nags me but as Doc and I agreed we're (phantom pain) are past pain pills

[@theampedlife]

Thanks for commenting and all the best with quite a recent loss. I had a bad experience with pain meds, so best to go off asap if I can add my 2c!

[@TheTimothy8136]

Can you have phantom pain after a arm amputation?!

[@theampedlife]

Hi Timothy, yes most amputations can result in phantom sensations or pain to a greater or lesser extent. I have a mate who lost has arm and he has sensations in where the arm used to be. It is not unusual at all, and notably is not always associated with a painful sensation.

[@TheTimothy8136]

Where’s the second part?!

[@rogm8577]

AKA for 6 mos. Due to many complications I am just now being fitted for prosthetic. Asking for advice. Not necessarily pain but sensation of a tight and stickey band around my phantom foot and ankle that is present 24/7. I feel if I could just remove that band or shoe I would be comfortable. Any advice would be greatly appreciated.

[@theampedlife]

Hi Rob, thanks for the message and for sharing what you're experiencing. I had similar sensations for the 1st few months, a tightening feeling like there was a noose around the foot. It lessened over time, and now I find the slight sensation quite helpful as it gives me a "sense" of where the foot is when I walk. My experience was that walking more, and swimming, increased circulation, which greatly helped. I hope this works out for you, with a good outcome soon.

[@tommyshearer891]

I get a lot out of your videos, thank you

[@theampedlife]

Hi Tommy, you're welcome mate, thanks for you message. Feedback like this really motivates me to create more video's.

[@GtrPknMama]

Thank You👍

[@theampedlife]

You’re welcome Janice, thanks for commenting and watching ☀️

[@Halfstep2024]

One word for help with phantom pain as a last resort still but gabapentin/neurontin will help with phantom pain a lot better than opiates will.

[@agnessymon8869]

My Father had his amputation 8 years ago. His phantom pain just keeps getting worse. He is on a very high dose of gabapentin. It doesn't seem to help.

[@memebugotti155]

They don’t help me I’m 2 months in

[@paulcooper5748]

I experiance the electric shock i had xray and they found i have a damaged nerve.

[@theampedlife]

Thanks for sharing your experience Paul. Who knows, perhaps someone will read it and you might be helping out a fellow amputee! Have you had something done about the damaged nerve? Is it possible to get rid of the shocks ... please let us know, the shock is something many people struggle with. All the best, please keep in touch.

[@paulcooper5748]

@@theampedlife Hi chris i take lyrica everyday it helps but the pain still overpowers it i have asked to have an operation but they tell me evan with a operation it still may not fix the problem.

[@soodhag2412]

Are u an amputee? Which nerve is damaged?

[@brendagoosen467]

How did you lose your weight? I'm trying to get rid of weight on my stump because I'm struggling to get my socket on. Please give me a little advice!!??

[@theampedlife]

Hi Brenda, thanks for your message! There are three possibilities here. It could be weight, the socket, or the liner being too thick. With regards to my weight, I simply made a few behavioral changes, and small changes to my diet. Mostly it was behavioral change - when I eat, what situations I avoid, a little more structure to my day wrt meals. I eat mostly what I want, but I trust my body to indicate what I need, when, and how much. No strict diet needed. Exercise is a part of the solution, I walk and swim to keep a little fit, nothing too serious. I really hope you find your solution, but I am confident that the changes I made could work for most of us. Please let me know what your thoughts are on this☀️ All the best!

[@brendagoosen467]

Thank you Chris for the reply. I will definitely try to get the best results and to walk with my prosthetic leg. My husband made some alterations by putting in a insert to lengthen the pin. No my stump is going in much easier into the socket. I will keep on checking your video's, because it helps a lot. Thank you.

[@rysammy]

I had a absolutely terrible experience starting yesterday morning at 9am with stump and phantom pain, it came on every 20 seconds and lasted from 1-3 seconds till 9:30pm, it come on several times during the night as well. The pain alternated between my stump and a phantom pain between my ankle and achillies tendon on the exterior side. The pain felt like someone hammering an electric knife into my bone and twisting it. I was worried about my neighbors were going to call the cops from me screaming out. I do not know why the pain started and pray that all my pain goes way when this pain stops. I am 2.5 years out from my amputation

[@hanskonrad5850]

Can you take Ibuprofin ? I do 800 to 1k MG and that pain is gone till next round if flare ups ..usually does this to me every couple few months.

[@TheCuriousOrbs]

Oh my god, that sounds bloody awful. Are you able to visit a pain management specialist in your area?

[@cedrichunter9759]

How long did it take for you to freehand walk after your amputation?

[@theampedlife]

Hi Cedric, about 8 weeks. It's unusual to walk so soon without aids, best is to be patient and wait for everything to settle down. I could have waited a little longer.

[@Xanavi23]

A very interesting video, but spoiled by the 'jump' editing where there are small but distracting breaks in the film. What's the point of that? This is a huge subject and I understand that this is only part one, but I would suggest that it is almost impossible to offer an generalised perspective on this subject. Every person living life with an element of limb loss is absolutely unique and the experience of phantom nerve pain is similarly personal. I encountered the loss of my right leg, ultimately above the knee, in 1979 and I have been privileged to help support a significant number of people living with limb loss during the past 39 years. PNP is uniquely personal, but I would acknowledge that any attempts to raise awareness of this challenging subject should be welcomed.

[@theampedlife]

Hi David, thanks for the time you took to put into your comments. Re the glitching, no specific reason, just not that accomplished at editing, or in getting my thoughts aligned all at once to present them in one fluid conversation. You are right, of course it is a complex matter with a unique experience for all. As a counsellor in disability I am reflecting on some of my encounters with others, as well as on my own experiences. I certainly don't want to suggest that I understand your or another's struggles or pain. This is simply an attempt at starting a conversation through which we can hopefully all benefit in some small way. Of course my views will be just that - mine. Hopefully it is contributing to understanding phantom pain, and not a directive of any sorts - that was never my intention. I hope to be able to bring some broader perspectives with the next discussion on this topic.

[@edwigcarol4888]

Don't the doctors know the immensely useful work of the neuroscientist V. S. Ramachandran ? In particular his book "phantoms in the brain".. his experiment with the mirror boxes ?

[@TheCuriousOrbs]

I believe that this therapy isn't typically the domain of medical professionals but more the field of rehabilitation specialists and physio therapists. Doctors are trained to treat conditions with drug therapy first and foremost.

[@weedeatnogreweo7574]

Just. Watched 13 things amputee video left comment on phantom pain .

[@theampedlife]

Thanks, I saw it and responded, I appreciate your contribution to the channel!

[@paulgerard8859]

Thank u, a great vid

[@theampedlife]

Thank you Paul, it's a pleasure. Feedback like this is really motivating.

[@OFPgaming_pokehaven99]

I'm scared of Phantom limb pain 😳. My amputation is in less than two weeks.

[@theampedlife]

Hi, phantom pain is hard to predict, but my experience is that by far the majority of amputees are free from this after a short while. It's one of those possibilities that is unlikely, and even if it happens it usually fades and ends. The best we can do is to find the best possible surgeon, and to manage the aftercare well. I wish you all the best, please let us know how you're doing, and reach out if you need help 🙏☀️

[@patriot1384]

Just subscribed...thanks Been up early this morning watching several of your videos

[@theampedlife]

Hi Pat, thank you for joining the conversation, I hope to hear more from you in the future. Some more content coming soon!