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Shane

Comments on phantom pain

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So I had this idea, probably not a new one, but thought it may be a nice way to put lots of our comments about our personal bouts with the phantoms in one spot. I'm thinking along the lines of personal experiences with phantom pain. More of a place to list our comments on our personal experiences with phantoms than a question and answer thread. My intent is to provide just one more source of reference for researchers and, just as importantly a place where "newbies" can read of our experiences and know they are not alone in this crazy new world. I'll come back later and make a contribution.

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Excellent idea, Shane!

I'll start off by saying that I'm incredibly lucky on the phantom pain front... my episodes are few, far-between, and usually fairly mild. I've only had one single day where I had to leave work due to severe phantoms.

I do find that I'm more likely to have a "spell" if I'm overtired or stressed-out. For those, I've learned that massage (or even "spanking" my stump), heat treatments, or simply getting some sleep will break the cycle.

As I said, I'm one of the lucky ones... and I know it!

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First thing that comes to mind is something I heard along the way. And that is that frequency and intensity of phantoms can be affected by the amount of trauma, IF trauma is the reason for the amputation. My personal experience seems to support this. I was riding a motorcycle and had a truck in oncoming traffic that turned left into me. Left leg was all but torn off, pelvis broken 3 places, torn spleen, etc. Cassie, my wife, says when she first saw me, there were pieces of bone laying BESIDE me on the stretcher. So, pretty serious trauma.

Fast forward to when I woke up from amputation (LAK). My first experience with the "Phantom" was an intense burning feeling in my (missing) left foot (where most of my phantoms manifest). This burning was way beyond comfortable, but, I soon found out, not as bad as it could be. The burning lasted a few days and eventually backed off, some. Sort of like if your foot is asleep, but with the volume turned up to 10 instead of 1 or 2. I eventually came to call this "buzzing." But, no mistake, it HURT.

The next sensation I met with was the "sizzle and pop." In addition to the "buzzing," this was a new level of intensity. First description that comes to mind is bacon frying in a pan. But with a definite "electric" quality. Like if the bacon was frying do to electricution. Luckily, these would come and go. But on their own schedule, not mine.

Next sensation to describe is the "Big Daddy" of them all. What I call the "jolts." These pains, for me, are as bad as it gets. I'm talking "bamboo shoots under the fingernails" pain. Howling pain. These pains include the infamous "stabbing with an ice pick" type of pain . But again, with a certain "electric" quality.

OK, so these are the basics for me. While the symptoms do vary, most of my phantoms fit loosely into one of these descriptions. The "buzzing" was near constant for SEVERAL weeks. I was really afraid because, as far as I could tell, I had no reason to believe they would ever stop. In the end, I don't guess the buzzing ever stopped, but the intensity backed WAY off and now it feels almost like my foot is asleep. Just a little more intense. I also have to say that the buzzing "backing off" is probably at least part due to the body's ability to adapt. What I mean is, I don't feel like my foot is constantly "buzzing." Unless I stop and really take notice. Then I realize, "yep, still there." But I would say the buzzing has backed off to a level that doesn't have much of an effect on my day to day life.

"Sizzle and pop." I still have these fairly often. But the intensity of this one is also down compared to those early days. Sometimes it does seem that the "sizzle and pop" preceeds the "jolts" but not all the time. I'd say, most of the time, the jolts sorta stand on their own. These often hit me a night, while asleep and will literally sit me straight up in the bed and make me "bark at the moon."

Sometimes, there are some things that seem to contribute to the onset of a bout with the phantom. Others, no clear reason is there. Here are some of the things I've learned to read as a "caution light.'

-"over-doing it" on an especially active day can sometimes trigger the jolts and/or buzzing. A secondary cause here may be that, on those days, I'll often go without adding socks like I should. My theory is (for AKs)that getting too far down in the socket "crowds" my sciatic nerve, which is touchy. Possibly from the sme trauma that broke my pelvis.

-This always gets a smile, but sometimes the need to use the toilet will set off the sizzle and pop and the jolts. (#1 or #2)Sometimes this is obvious to me, since the phantom goes away after "relief." But almost as often, the phantoms will let me know before the "urge to go" even comes to me. Again, I think this may also be linked to "crowding" the sciatic nerve.

-Changes in weather. A couple scenarios here. First, big temp, changes especially hot to cold. Sometimes this will trigger an extended bout. Other times there may be little or no effect caused by temp changes. Thunderstorms will sometimes have a big effect, but not every time. I would say close to 50% on thunderstorms.

-Cold Stump. Being outside in the cold can cause the phantoms to strike, if it's cold enough to cause my socket to "chill" my stump.

-Nerves. Yep, sometimes just being stressed can bring them on. But not always.

-Sitting in my socket too long. While my socket(MAS) does wonders for sitting as an AK, I still have to take things in moderation. Don't over do it standing, but especially don't over do it sitting. This is a real source of frustration for me. And is often a tough balancing act. Very hard to connect with folks in public when all you can think is "somebody pull this damn screwdriver out of my foot'"

Last thing,for now. I've had a B..ch of a time with phantom pain. In the first 2 months, they would strike hard anytime after 4pm. This was so intense, I would've done anything to make it stop.(yes, anything) Those first 2 months especially, I would end each day in a similar fashion. I'd tough it through for a while, then go to bed, which always resulted in an increase in intensity. Cass would put on some new age music and gently rub my back in the dak until me or the phantom gave up and I passed out.

So, I'm at @2.5 years post amp. The phantoms still come to visit regularly. But the frequency and sometimes the intensity are way down. Things are probably still improving. But if this is as good as it gets, I'll take it!!

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Shane,

As far as the phantom pains due to trauma being more intense, I would have to agree with you on that.

My amputation was due to trauma and for a while I had a lot of phantom pain.. My phantom pains didn't start in the hospital though until about 3 weeks after the amputation was done.

It started with the burning sensation you referred to early. Actually, for the most part, you described my phantom pains very well, with a couple of exceptions..

I have a huge amount of "pressure" when a snow storm is coming in..Or a good size rain or thunderstorm working its way toward us..

At one point, I had phantom pains constantly for 4 days.. Which we promptly got 10 inches of snow on the 4th day.. I am 5.5 years out and they do lessen, at least they did for me.

I did find one thing out.. In the beginning. I used to have the "grand daddy" of all pains which felt like a massive cramp in my stump that had no place to go... What I found out about 6-8 months after the amputations was that I was low on potassium.. So, I started taking a potassium supplement daily which help to all but end them.. I don't think I have had that cramping sensation for about 3 years now..

When I'm tired or have spent a 12 hour around the farm, once in a great while I will have some phantom pains which are the burning sensation that you described. If I set in a warm bath, they will go away.. Stubborn me, I've never bothered to dig out the heating pad that others have said they use to help them.

I am really fortunate in the fact that if I can occupy my mind, I usually don't notice them.. Now, that isn't saying that it makes all my pain go away, but, it is just phantom pains, then I won't notice them so much..

One thing, I have done acupuncture on my stump once.. I was doing it for my hips and low back for pain resulting from injures caused by the accident. It really helped the area of my stump that has felt like it had a small neuroma starting in it.. I can't say that it went away,and I won't. But I will say that it has helped in that area. I didn't have much problem with phantom pains either until this latest snow storm came in last night. (And it's still snowing by the way :blink: :( ) Anyway, for me, those phantom pains did lessen after a few years. The really bad one did anyway..

Not saying that they will for everyone, it's just my story on them..

I think that your idea of an area about phantom pain was a good one!

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Sorry folks Can't help with this one. I only ever experienced a gentle tingle. Annoying but not anything to complain about and that hasn't happened since I was a teenager....please do not remind me how long ago that was. :P

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Good posts everyone and good idea Shane....

I hate to be smug but I have to say that I seem to be one of the lucky ones who doesn't really get phantom pain at all. I do get the jolts occasionally but they usually don't last more than a few seconds and so don't affect my life at all. My stump also constantly tingles but again this is something that unless I actually stop and think about it I don't notice. And I lost my leg due to trauma too so I must be an exception to the rule.

Two things that have helped me over the past 3 years though are as follows:

1. Lots of exercise. I find that when I exercise loads my leg hurts less. By loads I mean I literally need to go to the gym about 5 times a week which isn't physically possible a lot of the time. It does seem to work though; and

2. Like Higgy said - be careful of cramp in your stump. When I first started exercising loads I got the most awful pains in my stump and I just couldn't work out what they were. I subsequently realised that they were cramps. I think because the muscles and nerves are all messed up and circulation is not as good there as everywhere else in your body, that the stump just can't get rid of lactic acid as effectively as everywhere else, and also that the salt balance can be more easily upset. Anyway, once I realised what the cramps were I just made sure that I drank rehydration salts any time the stump started to feel a little dodgy, and it seems to have worked - haven't had them for ages now.

They are my only two tips. Whether they are top or not I don't know.

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I am a bit like you Fiona, but for years never really got any real phantom pain at all. However, I too was doing loads of exercise, with a lot of physio in the early days. The phantom pains I have had have actually come as the years have gone on, mostly when I am not wearing the limbs, or the limbs are not fitting me right.

My own theory is that is down to warmth and circulation, although having said that, sometimes there is no accounting for those "electric shock type jolts" which can suddenly appear.

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Oh boy...phantom limb. That is fun. It's been about two years since my amputation, and it hasn't changed one bit. I still feel my entire arm, but just as though it's asleep. You know, all tingly and stuff. Every now and then I'll get some twitches, if I get too cold my limb starts to shake (I guess a bit unrelated to pain), and every now and then I get a shock. What I mean by that is, just a shock of pain. It happens maybe once a week, so it's not too bad. The thing is, feeling like your arm is asleep twenty four hours a day is a little annoying. After being released from the hospital, I was prescribed oxycodone...and I can definitely say that was the only way I could fall asleep at night. Luckily, I just kind of got used to the tingling...but it still bothers me.

So! Here's a question. What could be done to quell the tingle? Another, more controversial question, could medical marijuana be prescribed for such an issue? I have never tried marijuana, of course...I just know it could possibly help.

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Interesting questions. It helps with nausea and increases appetite. I definitely don't need the latter :tongue:

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I honestly wish that there would be some "real" studies on the usefulness of medical marijuana...not just stories based on anecdotes. If the stuff (or some particular component of the stuff) has particular applications where it can be truly useful, then it should be available to those folks who could use it...if there is a limited (or no) usefulness, then we as a society need to sit down and figure out what, exactly, we intend to do about "the pot issue." But so far, I've not heard a lot about anything resembling an IMPARTIAL study into the matter...folks are just trying to justify either the USE or BANNING it.

Okay...off my soapbox!

Back to the phantom pain question...I'm going through a "pain spell" that's lasted longer than anything I've had before. Lucky for me, it's not a BAD pain spell...it's just oddly persistent. Seems to be related to the fact that I've been doing so much "sorting and packing" for my upcoming move: for the past few weeks, I've been spending a LOT of time sitting on very low stools and bending over to clean off bottom bookshelves, lower cabinets, under sinks....that sort of thing. I still have my one-and-only phantom body part, which is the big toe on my missing left foot, and that phantom toe is buzzing and throbbing like crazy! It's been there, constantly, for about two weeks, and it gets worse when I take my leg off. I've had to resort to actually treating it, as opposed to just "ignore it and it will go away."

Now my version of "treatment," like my pain, is not all that much: I'm taking tylenol, wearing a shrinker when I have the leg off, and am covering up my stump with an extra blanket at night to keep things warm. That's enough to keep the buzzing down to a level where I can sleep.

It's just been so odd for me, as someone who spends most days completely pain-free! Hopefully, it will settle back down by the time the packing is out of the way......

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I am having some wonderful phantoms as I type, storm is passing.

What I've tried in 15 months:

- Nuerontin

- Lyrica

- TENS machine

- Hot Cold Packs

- Baclofen

- Lidocaine/Prolocaine patches and ointment

- Ball Peen hammer

- The car door

What I'm trying next:

- Accupunture

- Nerve Blocks

- Ball Peen hammer

At night when most of the sensory nerves are in a relaxed state, that's when the pain is at its worse. I do believe that trama surgeons need to AUTOMATICALLY use an epidural prior to any amputation.

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Oh boy...phantom limb. That is fun. It's been about two years since my amputation, and it hasn't changed one bit. I still feel my entire arm, but just as though it's asleep. You know, all tingly and stuff. Every now and then I'll get some twitches, if I get too cold my limb starts to shake (I guess a bit unrelated to pain), and every now and then I get a shock. What I mean by that is, just a shock of pain. It happens maybe once a week, so it's not too bad. The thing is, feeling like your arm is asleep twenty four hours a day is a little annoying. After being released from the hospital, I was prescribed oxycodone...and I can definitely say that was the only way I could fall asleep at night. Luckily, I just kind of got used to the tingling...but it still bothers me.

So! Here's a question. What could be done to quell the tingle? Another, more controversial question, could medical marijuana be prescribed for such an issue? I have never tried marijuana, of course...I just know it could possibly help.

Hey, I guess I would like to pose this question to those who have had amps for a long time, but does that "tingly" feeling ever go away? One guy who has been 30 years as an amp, and is a prosthetist, told me that he still feels "numb" in his phantom limb. I have assumed its just something you get used to, and your brain "tunes it out" over time.

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Six years and I'm still tingly. :smile:

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My "tingle" wore off sometime during my first year...however, it's been back with a vengeance for about a month, now, ever since I've been working on packing stuff for my move. (Something about the positions I'm getting myself into, I think!)

I know folks who say that their phantom limbs are still with them after decades as an amputee...some have the "tingle," some feel a "cramping" sensation, and some feel that the phantom limb is frozen in some odd, unnatural position. In all cases, I think you eventually adjust to it, at least for the most part.

Now, gang...I have a question (related to my own recent tingling, buzzing, and zapping) for those of you who have had a neuroma. I've noticed that there is a tiny, hardish, pea-sized "knot" just above my incision line that appears to be the "culprit" that is setting my phantom big toe to doing its little pain-dance. It's tender to the touch, and when I can mentally isolate the phantom toe from my stump sensation, the pain is definitely coming from the part of the stump where this "knot" is located.

I'm taking it in to see the doctor shortly...does it sound like it could be "neuroma-related" to you guys? Could it just have been buried in my muscle until shrinkage finally revealed it?

Inquiring minds want to know!

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Hi Cheryl

I have been involved recently in another discussion somewhere else about phantom pain, and am realizing that I seem to have a different take on this to everyone else. I think that may partly be due to me having my amps when I was young, and no one ever mentioning about phantom pains to me. Anyway ... I tend to identify more with phantom sensations (which don't really hurt) and nerve pains (which do). When I had my initial amps, no one really told me anything about phantom pains etc., so my terminology prob evolved from what I felt. I don't remember too much nerve pain in the early years, I do remember early on though lot of 'aching' but used to get this as a child anyway so didn't connect it, maybe this was phantom pain and I was misunderstanding it but got my first real taste of it about ten years on when I had a nasty rub on my stump and couldn't wear the leg for a few months. The kind of pain I got then was a bit like a 'toothachey' pain, but was constant, my GP tried painkillers but they didn't work, I did find though that if I did something that took my mind off it, like listening to music, reading, watching TV etc I didn't notice it. Once I could wear my prosthesis again and got back to walking it disappeared. But came back some years later, when I had problems getting a well fitting prosthesis, and was told I had a spur and neuroma on the end of the fibula area, this was a bit different and would be an 'ouch' type of pain with any direct pressure on it. The whole end of my stump was very pointed and unpadded so I did have a revision amp which sorted out the shape of the stump and got rid of the offending areas.

I have also discovered I do have a spur and neuroma about half way up the stump ... these really only bother me if I start putting pressure on them, otherwise they are ok, and I only found out about them because they showed up on an ultrasound and x ray and were explained. I was told these were old, so had probably had them for years, altho don't think they had caused any problems. Recently, I have really gone down in my socket and am in the process of having new limbs made, but I too have had a flare up of what I would call 'nerve pains' and could also identify the point where the pain was located .. between the spur and the neuroma.

Because what I have is under skin grafting I can locate it quite easily,and can feel them if I prod around. I was told neuromas and spurs often go together, and that sometimes you can notice a whiteish spot where it is, so not sure if you have noticed this yourself.

Maybe like me you have gone down a bit in your socket (or up a bit) and are putting pressure on a slightly different area of your stump, or maybe you have been leaning forward or sitting awkwardly packing those boxes and shifting pressure, plus perhaps stressed over the move or the leg.... nowadays I really only get discomfort if the prosthesis is not fitting or maybe do a bit too much walking, but have discovered stress plays it part too, though not sure which way round that works.

Ann

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One comment, specifically for newcomers who are YET to have amputations:

Anaesthesia.

It appears from both anecdotal and lately more evidence-based thinking that if you go into your operation PAIN-FREE you are less likely to suffer from phantoms in the longer run.

This means talking to your anaesthetist early on, and making sure you take your maximum doses of painkillers prior to your op, and also get into hospital and onto an epidural drip of morphine at least 12 hours (preferably 24) prior to your operation.

Rationale: your brain ain't smart, and if it thinks that your ankle/foot/leg is pain-free, then that's what it is. Conversely, if your brain thinks your ankle/foot/leg hurts, THAT is the memory it'll carry with it for a long, long time.

Allen.

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A friend of mine turned me on to a homeopathic remedy that has been working well for my phantom pain, which had decreased from severe electrical shocks for months after my amputation to a dull burning tingle.

She recommended Hypernicum Perforatum, also known as St. John's Wort, which is a well known homeopathic remedy for nerve pain. It comes in small pellets which I desolve under my tongue. It has helped me to finally be able to completely get off the Neurotin I had been taking since my surgery. It works very well at night to calm my stump so I can sleep.

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A friend of mine turned me on to a homeopathic remedy that has been working well for my phantom pain, which had decreased from severe electrical shocks for months after my amputation to a dull burning tingle.

She recommended Hypernicum Perforatum, also known as St. John's Wort, which is a well known homeopathic remedy for nerve pain. It comes in small pellets which I desolve under my tongue. It has helped me to finally be able to completely get off the Neurotin I had been taking since my surgery. It works very well at night to calm my stump so I can sleep.

I went to a homeopath a few years back, at the time I was getting a lot of sciatic pain and I used it for some weeks ... and this along with some of the other remedies he gave me seemed to help me also. Be careful with it though if you are on other meds, I am trying to remember back but think this is the one there can be a problem if you are using any sort of blood thinning meds post operatively.

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Hi all some great stuff here. I suppose I experience the same pain as Shane. For me 10 years down the line homeopathic treatment has had the best effect. I have had about 4 attacks this year using homeopathy. As others have said pre warning of the amputation seems to generate less pain? I have tried EFT for distraction and hypnotic cd's with very limited success. Atmospheric pressure may have some input as well who knows. I feel for all of you that suffer, the sleep depraviation is a killer for me.

Paul

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Good posts everyone and good idea Shane....

I hate to be smug but I have to say that I seem to be one of the lucky ones who doesn't really get phantom pain at all. I do get the jolts occasionally but they usually don't last more than a few seconds and so don't affect my life at all. My stump also constantly tingles but again this is something that unless I actually stop and think about it I don't notice. And I lost my leg due to trauma too so I must be an exception to the rule.

I could have written that, so I'll borrow yours Fiona, it's easier wink.gif

I find I don't even get the tingle until someone talks about phantom pain.... so thanks everyone... I'm tingling...

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How lucky some people are not to suffer from Phantom Pain.I wish I could put myself in that category but unfortunately one year down the line as a BKA I am still getting PP every single day,sometimes bearable other days driving me up the wall.Even as I sit writing this I'm giving the occasional ouch.

One day maybe it will go away,at least thats what I keep telling myself.

Joan

Dalec.

A friend of mine had his arm amputated 40 years ago and still gets PP occasionally.

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