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mikeybucs

Phantom limb pain

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Wow, this phantom pain is no joke. A week ago, I thought I was going to avoid this entirely and have a nice easy recovery. Then, Tuesday morning rolled around, and I woke up with a sharp burning sensation throughout my missing foot. This was punctuated by regular periodic jolts every 30 to 45 seconds (primarily around my big toe, heel, and the top of my shin). Feels like a live wire. I'd rate the pain from these jolts at a solid 7/10. This has continued steadily for the past five days with no letup. I'm thinking that these pains must be the result of my cut nerves healing themselves, right? I spoke with a friend of mine who's also an AKA, and he told me that the worst of these pains should subside after about six weeks.

Funny thing is that I have almost no pain at all in the vicinity of my missing knee. That knee was my only source of pain prior to my amputation. No idea why all of my phantoms are focused on the foot, when I never had any foot problems at all prior to surgery. My stump pain has been negligible since the operation (mainly just the back of my thigh where the surgeon cut the hamstring muscle and some slight discomfort along the incision).

For the record, neither Lyrica nor gabapentin has done much good with respect to alleviating the phantom pain. I'm taking 2400 milligrams of gabapentin per day (Lyrica was discontinued due to being wholly ineffective). I'm not sure whether or not the gabapentin is doing anything at all, but I'm operating under the assumption that the pills I'm taking might be reducing the phantom pains from what would be a horrendous level of agony to merely a very bad level of pain.

Despite this development, I remain extremely happy that I had the surgery. This is hopefully just a bump in the road that will pass in time. Having said that, if anybody tries to tell me that these are "all in my head," I'm liable to knock them out. :-)

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I think its all to do with the nerves that have been cut, and I suppose that the feet are where the nerve orginally ended, so maybe why you are picking this up more at this point and not the knee. I had a revision amp almost forty years after the original amps and had the same, though hadn't had any feet or real feelings of feet for all that time. Mine did reach a point where I was convinced something was wrong, and was lucky enough to be in a position to get x ray and ultra sound, it was very interesting because I could actually see the cut the nerve with all its, what looked liked frayed bits, searching out for the rest of the nerve. Nothing was wrong, it was just part of the process, but seeing it helped me put my mind at rest and they did gradually wear off though and hopefully it will be the same for you, for me the worst time of day for this was always the evening/night time ... I found it better when I kept busy and my mind occupied and as well as convincing myself that it was normal and would be better in time, which it was, though it took a few months...not that I am saying its all in your head ... more probably all in your stump.

I am now nearly two years on and only get them occassionaly when the prosthesis is not fitting properly.

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Hi Mikeybucs,

I am definitely feeling for you! I am sorry you are dealing with the phantoms. They are not all in hour head!!

My phantoms started about a week after my hip disarticualtion amputation. I also thought I was going to avoid them. It was very similar to what you have described; these intense electrical shocks going through my phantom foot. I also couldn’t understand at first why I was feeling it in my foot, which had been the least troublesome part of my diseased former leg. I had always had the most pain in my hip and knee. From what I have read it seems to be a very common place where amputees feel the phantom pain. It felt like my foot was being tazored every few seconds. I had never felt anything like it. At night I would massage my stump and that would help a little.

I started going to a pain management doctor who started me on 2400 mg of Gabapentin per day, along with the narcotic Dilaudid. It did help somewhat but still; the pain was very hard to deal with. I was up all night every night and hardly slept for the first three months after my surgery. The nights were the worst and I would just try to keep my mind occupied though the night with movies, music or the Internet. Then I would catnap a little during the day. Eventually they did start to lessen over the next six months, and I was slowly able to decrease the dosage of the meds. I finally was able to stop the Gabapentin this past March, a month after my one year amputation anniversary. I have been slowly been weaning myself off the Dilaudid as well and hope to be off that by the end of this month. It has been a very slow process but now I can comfortable live with the little phantom pain I still get; which is some burning in my stump at the end of the day and the occasional shock. I also think that finally starting to wear a prothestic in Dec helped a great deal with desensitizing my stump.

I have started taking Hypericum Perforatum (St. John’s Wort) and it has proven helpful for the mild pain I still have. It is a holistic alternative you may want to try as well but I would check with your doctor for interactions with any medicines you take now.

Best of luck and I’m glad to hear that everything went well with your surgery and that you feel confident that you made the right decision. The phantom pain will pass in time.

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"Wow, this phantom pain is no joke"

Hy Mikey,

How right you are with your statement above.This is my first time on here although my husband has asked questions previously.Im a young 73 year old who used to love dancing and walking etc.

I am a BKA since sept 09,I never felt any phantom pain untill many weeks after the op.I never get any pain in my stump and my prosthetic is a perfect fit,never any marks,sores or redness after taking it off.

Phantom pain in my lost foot is another matter,I am having it everyday.some days it is bearable and on others I feel like ending it all as the lightning bolts just keep coming and I reckon I have shed enough tears to make a lake.

My husband(bless him)purchased me a Medipro Relax Sock,not cheap at £84 but Im afraid it hasn't helped,so now I have recently received from Canada a Farabloc blanket 12in.x 24in.(£63)much cheaper than having a sock made to measure as the standard sizes would not have fitted properly.I wrap the blanket around my stump and after about an hour I get a burning sensation and slight tingling effect which is normal as it is the result of the action of the Farobloc fabric.I must admit to a better nights sleep since wearing it.

Medication....I am on Gabapentin 600mg 4 times a day (2400mg) also MST 10mg morning and night,also i can take 5mg of Oromorph up to 3 times a day if required,needless to say it is often needed.But even with this lot I still get severe Phantom Pain,I am going to ask my doctor if my MST can be increased as i am on the lowest dose.

Best of luck with your FP Mikey and lets hope someone can come up with a permanent cure for this hideous pain one day.

Joan

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After a week of nonstop horrible phantoms, I finally contacted my doctor to request a change in the pain medications. I received a prescription for some Fentanyl patches. Within 24 hours of applying the first patch, the Fentanyl has almost completely wiped out my phantoms. They're still there under the surface, but almost all of the pain is buried by the medication. What was a severe burning and stabbing sensation before is now just a light tingling. Thank goodness. Problem solved. Thank you, Fentanyl! :-)

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Hi Mikey,How are you getting on with the fentanyl patches,are they still softening the Phantom Pain.I am still suffering on a daily basis so i might ask my doctor if i can try them.The one thing that worries me about Fentanyl is that one of the possible side effects is Hallucinations,i was give a daily dose of Amitriptyline 20mg a few weeks before my amputation and after 5 days suffered hallucinations so severe that i was taken to hospital.

Anyway Mikey i do hope that they are still working for you.Are you still taking any other medication ?

Best Regards

Joan

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Hi Mikey,How are you getting on with the fentanyl patches,are they still softening the Phantom Pain.I am still suffering on a daily basis so i might ask my doctor if i can try them.The one thing that worries me about Fentanyl is that one of the possible side effects is Hallucinations,i was give a daily dose of Amitriptyline 20mg a few weeks before my amputation and after 5 days suffered hallucinations so severe that i was taken to hospital.

Anyway Mikey i do hope that they are still working for you.Are you still taking any other medication ?

Best Regards

Joan

Hello, Joan. The Fentanyl is working very well. I'm on my second patch (they get changed every three days). My dose is 50 mcg per patch. I haven't experienced any side effects from the Fentanyl. I'm not sure whether or not these patches are feasible for use on a very-long-term basis (have to check with your doctor). My plan is just to use them for the next three to four weeks, and I'm hoping that the phantoms subside by the end of that time period.

I'm also taking gabapentin (2400 milligrams per day, broken up into four 600 milligram doses). To be honest, I haven't noticed this doing a darn thing. On the other hand, I haven't experienced any side effects, either. I'm going to keep taking it at least as long as I'm taking the Fentanyl. Since I haven't missed a single dose, for all I know the gabapentin is working great and holding back some really unpleasant phantom pain.

I was initially taking Vicodin for "breakthrough" pain (the small amount of pain that the Fentanyl couldn't suppress), but I discontinued taking that after a few days. My system doesn't tolerate Vicodin very well (or its big brother, Percocet, for that matter). These pills work just fine at relieving pain. However, they also completely back up your pipes, if you know what I mean. Very scary when you can't go to the bathroom. Not a laughing matter to anybody who has ever gone through this after surgery.

You might as well go ahead and discuss the Fentanyl with your doctor. I'm only a small sample size of one, but I heartily endorse it. I have very little stump pain and lots of phantom pain, and the Fentanyl has worked splendidly for me. These phantom pains are bad news, and there don't seem to be many effective treatments available to knock 'em out. My doctor initially wanted me to get a nerve block, so you might inquire about that as well. Good luck, and don't give up!

Mike B

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Hi Mike,

Re gabapentin, I was told that it takes three months to get into your system before it is fully able to work. it's not like taking a pain killer, it is an anti epilepsy drug that works on the brain receptors.

I think you will be surprised at how much it does help, you will only know this of course when you try to lower your dose. I certainly know if I miss a dose as my phantoms go off lie an alarm....lol

Of course everyone is different, there are the lucky few that don't take any drugs at all.

Glad the fentanyl is working for you, I am allergic to it so can't take it.

Lynne

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Hi Mike,

Re gabapentin, I was told that it takes three months to get into your system before it is fully able to work. it's not like taking a pain killer, it is an anti epilepsy drug that works on the brain receptors.

I think you will be surprised at how much it does help, you will only know this of course when you try to lower your dose. I certainly know if I miss a dose as my phantoms go off lie an alarm....lol

Of course everyone is different, there are the lucky few that don't take any drugs at all.

Glad the fentanyl is working for you, I am allergic to it so can't take it.

Lynne

Thanks for the information, Lynne. I didn't know that. I'll most likely keep taking the gabapentin if I have *any* ongoing phantoms. I've only been taking it for about two weeks, so I've got quite a ways to go before I hit that three-month mark. I don't mind taking it on a long-term basis. I just want it to be effective. :-)

Mike B

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Hello again Mike,I'm glad to hear that things are still improving for you. You will have probably noticed that I have now registered in my own name,so I can now leave hubby's alone,. :biggrin:

You mentioned possibly taking a nerve blocker,I am taking MST 10mg twice a day (lowest dose)also I think Oramorph 5mg which I can take up to 3 times a day is also a nerve blocker,however even when I have the lot I'm still climbing the walls,I was up untill gone 3am this morning. When I see the doc I am going to ask if the MST can be increased.

All the best

Joan

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Hello again Mike,I'm glad to hear that things are still improving for you. You will have probably noticed that I have now registered in my own name,so I can now leave hubby's alone,. :biggrin:

You mentioned possibly taking a nerve blocker,I am taking MST 10mg twice a day (lowest dose)also I think Oramorph 5mg which I can take up to 3 times a day is also a nerve blocker,however even when I have the lot I'm still climbing the walls,I was up untill gone 3am this morning. When I see the doc I am going to ask if the MST can be increased.

All the best

Joan

I can empathize with you concerning the insomnia. I probably haven't had more than two or three hours of consecutive unbroken sleep in the past two weeks. At the moment, I have a burning in my shin and toes, coupled with a dull aching throb on the heel of my missing foot. Those pains wake me up after a few hours, no matter how tired I get. The Fentanyl reduces the pain a GREAT deal, but it's still just bad enough to prevent sound sleep.

The nerve block that my doctor recommended was actually some type of injection. I think it's similar to a spinal shot, which sounds a lot worse than it actually is. I opted to try a less aggressive form of pain management (i.e. the Fentanyl transdermal patches). I guess nerve blocks aren't always effective, and they carry some risks. Having said that, if I'm still suffering from phantoms six months down the road, I will definitely be going the nerve block route.

Mike B

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I hope that both of you reach the point where the phantoms fade as time goes by!

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Mikey, have the pains gone away or at least decreased? Hopefully things are getting better for you.

DJ

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Hi Mikey,

I know how you feel man. For the first few years after my AKA I had these sharp shocks (electric) that made me jump and lasted up to several minutes. After 30 years I get them once or twice a year and they are minor in pain now. When wearing my leg I have very little phantom limb pain. I just took my leg off as it was on about 14 hours. I can feel my foot, toes and ankle. It really does not bother me as it is less intense and I have gotten used to it.

I hope your pain lessens in frequency, intensity, and duration. Best of luck!

Freddy

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Where to now ??Update since seeing the doctor.After discussing my medication he decided to increase the MST from 10mg to 20mg ,and to continue with the 2400mg of daily Gabapentim.

I am now getting a good nights sleep every night,so some success there :biggrin: .However i still get PP daily,every morning and every evening.The evening is the worse,painful enough to bring me to tears.

The pattern which appears to emerge here is that the pain starts as one MST is wearing off and before the next dose has kicked in.I take them at 0830am and 2030pm.

So I guess the next question is "what will take me pain free throughout the day"?

I know that 20mg of MST is still a low dose and it's tempting to try 30mg,but i think i had better wait untill i see the doctor again.

Cheers everyone

Joan

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Where to now ??Update since seeing the doctor.After discussing my medication he decided to increase the MST from 10mg to 20mg ,and to continue with the 2400mg of daily Gabapentim.

I am now getting a good nights sleep every night,so some success there :biggrin: .However i still get PP daily,every morning and every evening.The evening is the worse,painful enough to bring me to tears.

The pattern which appears to emerge here is that the pain starts as one MST is wearing off and before the next dose has kicked in.I take them at 0830am and 2030pm.

So I guess the next question is "what will take me pain free throughout the day"?

I know that 20mg of MST is still a low dose and it's tempting to try 30mg,but i think i had better wait untill i see the doctor again.

Cheers everyone

Joan

I am going for Acupuncture therapy tomorrow for PP, I'll keep you posted. My insurance will not pay for it, but the cost isn't much if it works!!!

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Mikey, have the pains gone away or at least decreased? Hopefully things are getting better for you.

DJ

Sorry for the delay. The worst of the phantoms faded after about six weeks. In other words, no more stabbing electrical shock pains in the big toe. I still get the pervasive "pins and needles" sensations throughout the missing foot. While they are annoying and make it tough to get to sleep, the phantom pains have improved by several orders of magnitude. I haven't started gait training yet, so I'm crossing my fingers that physical therapy will eliminate the remainder of the phantoms.

It's been just over nine weeks since my surgery. Staples are gone, Steri-Strips are gone, and the incision looks terrific. I'm still using a stump shrinker to shape the residual limb. My prosthetist is working with my insurance company to get the green light to start making my leg. From what I've been told, the cost will be about the same for a C-Leg or a Plie2. The choice is mine. I'm still on the fence as to which way to go (i.e. should I choose the track record of the C-Leg or the potential innovation in the Plie2?). I still have time before I have to commit myself one way or the other.

I hope your recovery is coming along smoothly, too. I have NO regrets about proceeding with the amp. The last two years represent a speedbump along the journey of my life. Nothing more. :-)

Mike B

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Good luck Snuba,I hope it works for you.

Joan

Had the first treatment, went well, very interesting, the Dr wants me to continue for one treatment a week for the month to see what relief I get from it. My workers Comp will not pay, so I agreed to try it for the month and go from there.

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Mikey, have the pains gone away or at least decreased? Hopefully things are getting better for you.

DJ

Sorry for the delay. The worst of the phantoms faded after about six weeks. In other words, no more stabbing electrical shock pains in the big toe. I still get the pervasive "pins and needles" sensations throughout the missing foot. While they are annoying and make it tough to get to sleep, the phantom pains have improved by several orders of magnitude. I haven't started gait training yet, so I'm crossing my fingers that physical therapy will eliminate the remainder of the phantoms.

It's been just over nine weeks since my surgery. Staples are gone, Steri-Strips are gone, and the incision looks terrific. I'm still using a stump shrinker to shape the residual limb. My prosthetist is working with my insurance company to get the green light to start making my leg. From what I've been told, the cost will be about the same for a C-Leg or a Plie2. The choice is mine. I'm still on the fence as to which way to go (i.e. should I choose the track record of the C-Leg or the potential innovation in the Plie2?). I still have time before I have to commit myself one way or the other.

I hope your recovery is coming along smoothly, too. I have NO regrets about proceeding with the amp. The last two years represent a speedbump along the journey of my life. Nothing more. :-)

Mike B

I replied in you other thread but in short I would go with the plie. My recovery sucks. I got an infection (MRSA) along the incision about 4 weeks after surgery. It is gone now, just a few little scabs from drainage points. Now that the post op and infection pain is gone I am able to feel the same pain that I had before my surgery, as if the surgery never happened. I am just over 2 months post op and I still take 5-10mg of percocet every 4-6hrs. I start pain management in a few weeks so I am hoping they can do something to help. The Dr is sending me to an allergist to see if I am allergic to the metals in the joint. We have ruled out all other possibilities and I have the Dr somewhat accepting that amputation may be in my future. This is if I can't take the metal or pain management is going to be life long. I am stuck on the couch almost all the time, if I stand up too much my knee starts to swell and the percocet is making me weak/short of breath. I can't pull out the garden hose without taking a break to catch my breath. If I would have gotten the amp I would be much better off by now. I guess all I can do is wait and see what happens.

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phantom pain is one of the worst things

talk to a pain doc about doing a ladicain drip it really helps, also believe it or not going to a chiropractor can help

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