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CaptainKB

Phantom Pain

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Newbie here,

How have those of you that have experienced phantom pain dealt with it? I have been an AK amp since 1/26/09 and will be receiving my leg in the next couple of weeks. My attitude and support group has been great but my phantom pain is brutal sometimes. I have very sharp pins and needles type pain on my phantom foot, or sometimes a scalding type of feeling. Sometimes the shocks are so sharp that my leg will jerk suddenly.

What I have tried/trying:

- Still on Gabapentin up to 2700mg – Just takes the edge off and allows sleep

- TENS feels great when I use it

- Hot tub jets – same as above

- Massage helps but is very temporary

- I am in my second week of using Mirror Therapy and of all the temporary treatments; this one appears to have longer lasting after effects.

Has anyone gone through the entire 4 week Mirror Therapy regiment with success?

Thanks!

I am glad I found this site after much searching.

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Hi Captain KB

I think if you only had your amputation in January it is still quite early days for you yet. I found my pains kicked in about a month or so after my revision op, mainly when I first started doing more. I was in hospital at the time, and advised to take the painkillers, although I wasn't on Gabapentin, was taking paracetomol but told to take them regularly through the day, not just at night as I had been previously doing, so as I could sleep. I was also given a relax night sock, I find also keeping my stump warm helps a lot.

Every person is different, but I did find the shock type pains which make your leg jerk, did wear off, I used to literally just hold on to my leg when it did that. I generally used any distraction technique I could, especially listening to music or watching the TV, and gradually the pain more or less has worn off. I found it worked for me to sort of 'go with the pain', and not try and fight it, a bit like you are riding a wave. I also never think of it as 'phantom pains' as such, just nerve pains, and I have a image in my mind of the nerve, not my non existent feet, I don't focus on them at all, but have noticed a lot of new amputees do. However, it is probably a bit easier for me as I have been an amputee for years and it was revision surgery, so had been down the same road before, albeit many years ago.

I have never tried the Mirror Therapy but don't think it work for a bilateral such as me.

I think you will find quite a few threads regarding this topic on the forum, most of us have had it in one form or another at various times, and you will find lots of different ideas that have worked for different people.

Hope things improve for you soon.

Ann

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Hi Captain KB,

I know exaclty what you are going through and I am right there with you! I am another newbie and I have also been battling with the Phantom pains. I had my hip disartic amputation shortly after you, on Feb 10th. I have also been told that is still early on and to give it more time. Mine feels like sharp electrical shocks in my foot. Things have gotten better. I am taking 600mg of Gabapentin 4 times/day. I was at 100, then 300 and then 600mg. It has made the pain more bareable in the day and I finally have gone back to work. I had gone weeks without sleeping much but finally the past week I have been sleeping much better. I also have been able to get temporary relief from massage and the hot water in the shower. I have read about the mirror therapy and I am anxious to try it! I also may try acupunture as well.

Will you be using a prosthetic and have you started? Many have told me that often helps the phantom pains. I am hoping it will give me relief but it looks like it will be late May or after before my incision will be healed enough.

Welcome to the forum!

Chrissy

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Hi Captain KB,

I know exaclty what you are going through and I am right there with you! I am another newbie and I have also been battling with the Phantom pains. I had my hip disartic amputation shortly after you, on Feb 10th. I have also been told that is still early on and to give it more time. Mine feels like sharp electrical shocks in my foot. Things have gotten better. I am taking 600mg of Gabapentin 4 times/day. I was at 100, then 300 and then 600mg. It has made the pain more bareable in the day and I finally have gone back to work. I had gone weeks without sleeping much but finally the past week I have been sleeping much better. I also have been able to get temporary relief from massage and the hot water in the shower. I have read about the mirror therapy and I am anxious to try it! I also may try acupunture as well.

Will you be using a prosthetic and have you started? Many have told me that often helps the phantom pains. I am hoping it will give me relief but it looks like it will be late May or after before my incision will be healed enough.

Welcome to the forum!

Chrissy

Thanks for the welcome!

I have been fit with the socket and the knee and other components have been ordered. I will be using a c-leg and start therapy once the components arrive..

I know it is still early on but I wanted to give the mirror therapy a try since it was highly successful in the Bethesda VA trial by Dr. Tsao. Just like everthing you just never know how it will work for you.

Thanks for the reply

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I also have struggled with phantom pain since my amputation, LBK, in July of 2007. Tried gabapentin, never helped me at all, until I mentioned my pain to my family doctor.

He put me on 1 - 60mg Cymbalata, and in about a week I couldn't believe the difference. Don't ask me how or why it worked for me, but it did. I know it is often prescribed for diabetic nerve pain, which I also have in my right foot, and it has reduced that a lot to.

Joe

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I also have struggled with phantom pain since my amputation, LBK, in July of 2007. Tried gabapentin, never helped me at all, until I mentioned my pain to my family doctor.

He put me on 1 - 60mg Cymbalata, and in about a week I couldn't believe the difference. Don't ask me how or why it worked for me, but it did. I know it is often prescribed for diabetic nerve pain, which I also have in my right foot, and it has reduced that a lot to.

Joe

Thanks Joe. I am also on 60mg of Cymbalta. I have a very high threshold for medicine so I was told. I was in the OR for 12 hours and came to. Just to sedate me post op they had to put me on a 900ml Ativan drip. The trauma surgeon stated to my wife that such a high dose could put an elephant to sleep. I don't want to rely on meds and my doc stated that when I start walking again that the pain will deminish. I spent 2.5 hours making clam chowder from scratch on one leg this weekend and had ZERO pain while stading. Might just prove his point.

By the way the chowder was and still is darn good.

Thanks

Captain Kirk

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I had diabolical phantom pains for two weeks or so after my amputation, then lesser pains for a few weeks after that.

Since then it's subsided to almost nothing. In fact, I wouldn't say I get pains at all, just episodes of wierd feelings that last for seconds, or sometimes a minute maximum.

We're all different, but don't worry about it too much, I hope it settles as mine has.

Some say the more pain you suffered before your amputation, the more phantom pain you get. This hasn't worked out true for me, I had much bad pain for ten months before amputation and it's not turned out to be bad like I've said.

Distraction techniques are best, get a good film on the DVD player... chat/play with yur kids... go out somewhere... don't sit and think about it.

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I have phantom pain now as I have taken my leg off. It does not seem to bother me while wearing my prosthesis.

Like Ann those jolts went away with the pasage of time. Every once and in a while I get one. I think it is the way my stump is being pressured and/or twisted that will bring one on. I remember my stump shaking out of control during a few real powerful jolts.

Over time what bothered me 25-30 years ago is minor today. I think we get used to it. But I swear I can feel my left foot, ankle, and calf at times.

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Hi CaptainKB,

I have lived with phantom pain since the summer of 1994. I can't really call it "pain" now since most of the time it is just a sensation. I don't usually feel it during the day when I wear my prosthesis, but at bedtime the sensation varies in strength. Sometimes I DO get sharp jolts of pain but that only happens two or three times a year. Now what has helped ME a lot with these phantom sensations is wearing a stump shrinker at night. And, on those occasions when I experience sharp jolts of pain I have discovered that wrapping my stump with a heating pad makes the pain go away.

These things have worked for me and maybe they will work for you.

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Hi KB,

Now there's access to this forum again, scanning the topics I came across your phantom pain enquiry of 2009. I had ATK amputation in 2006 following a failed knee replacement and had severe PPs (knife stabbings in the foot). An article by Lorimer Moseley (Googled) introduced me to the therapy - followed by purchasing his book available from PhysioUK - and after a few days PP vanished.

Have rarely had any since - although I do experience very frequent troublesome muscle spasms in the stump through day and night, for which I've had no suggestions when raised on HM forum some time ago.

The mirror therapy was simply holding a mirror so that I saw 2 legs and exercising same muscle movements, symmetrically, in both.

Maybe in the meantime you've been successful - but thought a reply would do no harm even 4 years after your enquiry. Kennie

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I like the sound of the Mirror Therapy and will give it a go Kenny - I've not heard of it before. I don't get Phantoms often but they are a real %$!£" when they decide to visit...

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It's been awhile since the original post. Since then I tried a wide assortment of medicine, techniques............you name it. In 2011 I had an above knee version of the ERTL surgery. Totally rearranged the internal part of my stump. It worked well and the key was to have what is called an epi-morph prior to surgery. The idea is that even though you are out during the surgery, your body still feels the trauma Prior to the surgery an Anethesiologist administers a morphine line directly in your spinal column and your legs go completely numb. I had no pains at all other than scar tissue that needed to heal.

I will say that the mirror therapy was very promising The key is to purchase a wardrobe mirror. 24 in wide by 48 in long.

Cheers

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I question the need for such a large mirror - the mirror I use is no more than 18 by 10 inches; simply hold it about 6 inches from the bridge of you nose, 10 inch side vertical and longer side horizontal and, when sitting down (of course), raise your good leg and view it and its reflection. You'll see everything you need to see so then perform your symmetrical muscle movements.

It worked perfectly for me - much to my surprise and relief. Try it, Kate, and good luck . . . kennie

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The reason for the long mirror was that I could have my back to the wall and have the mirror in between my legs. I did not have to hold anything.

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