[Amptrooper]

Hello y'all,
It has been a while since I have posted here.
I have been busy since I got my leg. I also got a job as a prosthetic Tech
at the same place that I got my leg!
PROBLEM:
I thought that after I had my leg for a while that the nerve pain would start to lessen.
It has not. It is as bad as if I had my old beat up mangled leg still on.
I went to my Ortho Dr. about it and he said " well, there are no guarantees that the pain would go away"
and he will not prescribe any pills. I have had Lyrica and it's big brother med. The only thing that seems to help
are the narcotics. My Ortho Dr. WILL NOT!!!! prescribe narcotics past three months of surgery no matter what the case is.
I do not have insurance so seeing a pain Dr. is out. I have used Med stop enough that I probably should not try them anymore.
Every body seems to think I am a drug seeker. I guess in a way they are right. I am seeking drugs to stop the pain.
I only take them at night as I try to keep myself busy enough throughout the day and try not to let it bother me. At night when I am not so busy...
WOW! It gets really bad. I am not the kinda man that just cries but it gets me to tears. I usually go to the bed room so that my kids don't see it so much.
Every now and then I think it is good for them to see that Daddy has feelings and can cry but not every night. I am at the end of my rope and just don't know what I can do. Dr.'s tell me that I can get addicte3d to narcotics if I use them too much. I guess I just don't see the problem then. So what if I get addicted.
If it helps with the pain then fine you warned me, your free from responsibility. See that is what happens when people sue for stupid stuff. They just end up taking your choice away and tell you what you can and can't do. I am an adult and if I want to risk it then it is my business and my fault. Sorry, just venting.
I had Oxycodone 10 mg, 2 every 4 hours for 6 months straight when they were trying to save my leg. After I was done with them I "detoxed" myself. It was not so bad. I had sweats and moody but that was about it. All I want is Hydracodone and I don't not need 10 mg and I only want them for bed time. I just don't see the problem. Does anyone know what I can do? Is there anything else that will help without a script? PLEASE HELP ME!!!!!
God bless!
Corey
TK 9025

[snuba]

A newbie here, have very bad phantom pain also, I have been taking neurontin 1800 mg a day, it takes the edge off, but thats about it. At night is really the bad time, I have to agree. Ambien is a big help at night to help me sleep, that is most days it helps. Have stayed away from narcotic pain pills since the amputation.
I have tried mirror therapy with out any luck. Keep in touch and let us know how you make out.

[cherylm]

It's rough when the phantoms take over. There are some of us here who have had extensive experience with them. I'm not one of them...I've been blessedly phantom-free for most of my time as an amp, and I'm incredibly thankful for that.

You both may have tried the remedies I've used on those rare occasions when the phantoms have kicked up, but I'll mention them anyway, just in case...

As you've both learned, distraction can help quite a bit. That's why nighttime seems harder...not as easy to distract yourself. But "fantasy massage" has helped me...simply visualizing a long, deep, warm massage on my missing limb. Actual heat can help, too, either from a long hot shower or a heating pad of some sort. And compression can make a real difference, especially if the pains get worse when you take your leg off. I don't normally wear a shrinker at night, but I have one around for the times when the pain is bad. I've also used "progressive relaxation" exercises...they can sometimes provide enough distraction and relaxation that I can fall asleep.

I'm sure there will be some folks checking in who have tried other remedies, including meds, and can give advice on that front.....in the meantime, you have my sympathy!

[Amptrooper]

It's rough when the phantoms take over. There are some of us here who have had extensive experience with them. I'm not one of them...I've been blessedly phantom-free for most of my time as an amp, and I'm incredibly thankful for that.

You both may have tried the remedies I've used on those rare occasions when the phantoms have kicked up, but I'll mention them anyway, just in case...

As you've both learned, distraction can help quite a bit. That's why nighttime seems harder...not as easy to distract yourself. But "fantasy massage" has helped me...simply visualizing a long, deep, warm massage on my missing limb. Actual heat can help, too, either from a long hot shower or a heating pad of some sort. And compression can make a real difference, especially if the pains get worse when you take your leg off. I don't normally wear a shrinker at night, but I have one around for the times when the pain is bad. I've also used "progressive relaxation" exercises...they can sometimes provide enough distraction and relaxation that I can fall asleep.

I'm sure there will be some folks checking in who have tried other remedies, including meds, and can give advice on that front.....in the meantime, you have my sympathy!

Thank you for that. I have tried all that. I sleep with a silver lined shrinker. It does help. However it helps more when it is coupled with pain meds.
The pain meds do not get rid of the pain but they dull it enough to make it so that it does not consume me. I checked in right now just hoping that someone has a miracle method to share. My leg is off I am relaxing and the pain is winning. Badly
I may have to just find a way to get in to see a pain Dr. I have a script for it. I heard that they will give me pain pills. That, that is what they do.
Like I said I just use them for this moment. I usually only take 5 mg. Sometimes 2 of them if things are really bad.
I just don't know. Snuba, you are in my prayers!
God bless!
Corey
TK 9025

[ann]

Hi Amptrooper
Sorry to hear about the problems you are having with the nerves, I think for a lot of us, if the nerves are going to kick in at all, it will often be towards the end of the day, when we relax or take the prosthesis off. Everything everyone has said on here is good advice, things like hot baths, distractions, massage all help.

You don't say whether you have had any investigations as to the source of the pain you are having, I think sometimes all pain gets written off too easily as phantom pain but sometimes there are reasons why you are getting it so badly, which can be addressed. So maybe you might be wanting to ask for things like scans, ultrasound or x rays etc., which might be able to pinpoint why you are getting so much pain, for example you might have developed a bone spur or neuroma ... if it was me, that would be my first step, before I took stronger painkillers. As well as checking the prosthesis is fitting right, and you are not going too far down in the socket. Also, it might not be the cause, but I find just worrying about the leg will make it worse - just by thinking about it.

Ann

[Neal]

Clarify your pain. Is it in the foot that isn't there (phantom pain) or is it in your stump (physical pain)?

Some amps have nerve problems following amputation. They can develop neuromas where the nerve grew a bulbous end after amputation. This can be solved through surgery. No guarantees that it won't recur.

Phantoms pains are difficult to treat. I'm thankfully in a group that has few problems with them. If I'm remembering correctly, you had your amputation by Dr. Jan Ertl. His patients usually have few problems with phantom pains. The military is now using mirror therapy to combat this phenomenon. You can also try lightly tapping the end of your stump with a knotted towel or wooden spoon. All of this is to attempt to trick the brain.

Good to hear from you again. Keep us informed on your progress.

[Amptrooper]

Clarify your pain. Is it in the foot that isn't there (phantom pain) or is it in your stump (physical pain)?

Some amps have nerve problems following amputation. They can develop neuromas where the nerve grew a bulbous end after amputation. This can be solved through surgery. No guarantees that it won't recur.

Phantoms pains are difficult to treat. I'm thankfully in a group that has few problems with them. If I'm remembering correctly, you had your amputation by Dr. Jan Ertl. His patients usually have few problems with phantom pains. The military is now using mirror therapy to combat this phenomenon. You can also try lightly tapping the end of your stump with a knotted towel or wooden spoon. All of this is to attempt to trick the brain.

Good to hear from you again. Keep us informed on your progress.

Yeah, I had the amputation by Jan Ertl. It took him 10 hours and he said the only reason he stopped was because it was already to long for me to be out.
My damage was very extensive and full of scar tissue. He could only find two of my nerve bundles. so somewhere in my leg are the rest. The pain I am having is really mixed. It feels like it is in my non-existing ankle yet, if I touch the stump I can feel where the pain stems from. I did a two hour HOT bath and I massage it all the time. I also do the tapping technique. That one works when coupled with meds. I have not been to bed yet as I cannot sleep do to the pain.
So, I am at 37 hours of no sleep. I am about to go to the ER just for a prescription so I can sleep tonight. I think I am going to just spend the money and go to a pain clinic. I hear they have a shot that can block the nerve. Has anyone ever had that? I just don't know what else to do. Thank you all for your help!
I appreciate you all very much! God bless!

[Chrissy]

Amptrooper,

My heart goes out to you so much! Phantom pain can be so debilitating. For the first two months after my amputation, I hardly slept because of phantom pain. It felt like electrical shocks through my former foot. I had never felt anything like that in my life. I would be up all night just watching movies or on the Internet. The only sleep I was able to get was short catnaps through the day. I thought I was going to lose my sanity!

I was put on neurontin and also narcotics, which took the edge off. I wish I could say that the phantoms have disappeared, but even close to a year after my surgery, I still get burning and tingling, though things have slowly improved over time. I am still on a very low dose of neurontin and narcotics, which I am hoping to get off soon. I would say that if you can see a pain management doctor, please do. Mine has been overseeing my neurotin and narcotic therapy the entire time and has monitored me very closely for addiction. At first I was required to see him once every two weeks. Find the right one for you. The first pain doctor I went to treated me like I was just seeking drugs, which couldn’t be farther from the truth. I just wanted relief from the pain and to sleep. I dropped him like a hot potato! Then I finally found a wonderful pain doctor who listened to me and took my pain seriously. Besides the nerve and pain medication, what he prescribed for me that finally allowed me to sleep was Ativan, an anti-anxiety drug. It worked wonders and I was finally able to sleep normally again. Like Ann also said, I would also investigate if the pain dosen't have a physical cause.

I hope things improve for you very soon and you can finally get some relief from the pain and some sleep.

[Higgy]

I really feel for you Amptrooper... When you are in pain like that it is tough... From what you have said, it sounds like it might be a nerve mess that is giving you fits, although, I'm not a doc, just a person that has experienced a lot of pain ( had a whole bunch of injuries at the same time) at various points...It gets tiring, that's for sure. The only thing that has helped me is some over the counter sleep aid products help take the edge off enough to fall into a good sleep..But, then again, that was my decision and I do use caution.

As Neal said, sometimes, you have to sort of try to "clarify" your pain..... Does it feel like someone has your toe/toes in a vice, that the foot is being boiled, or is it just a flat out bone pain? Are you walking on the end of your stump?
With all of the trauma and re-attachment of my foot before the amputation, I really didn't have much pain after it, until about 8 weeks later. then it really lit up. They told me it was the nerve endings healing and coming back.. (pssst....they could of stayed quiet!) If you do decide to see a pain doc, these are probably all questions that he will ask....
I don't have any good resolutions... I'm fortunate enough that if I do occupy my mind, I can sort of push them to the edge, in the daytime anyway...but, like you, nights can be tough when I am having problems..Weather is a huge factor for me as it usually gets it all started.
I know that you feel that you have used Med stop enough, but if you do see the pain doctor, consider them.. Those programs from the companies that manufacture those drugs are there for just such a reason.. At work, we refer people to them all the time.. Sometimes, we do what we have to do.. especially when our families are involved.. It's good that you are so caring of you children, but, we both know that more time spent with them during "good time" is the best time..
Feel better my friend..

[kellyd]

I have bad Phantom pain..its a 24/7. The intesity just changes..lol.
I tried Lyrica and neurotin and neither of them helped. I had a revision done and no help. The scar still has a spot that is still real tender. I just try to occupy my mind.. It makes it hard to sleep both to get to sleep and stay asleep. But shrinker helps some. But, it is when I am trying to relax that it kicks up.
I am gonna try a accupuncturist when I get back to Idaho. The one there seems to think they can help and take care of it in about 5 sessions. Will let you all know if it works.

[Karen]

Check out the following link/article on a doctor at Georgetown Hospital who is doing minimally invasive procedures with short down-time on amputees to alleviate nerve pain. One of the patients at my prosthetic office had it done and it's helped him. I know you don't want to have any more surgery, but it's an option if nothing else works and it gets to be too much. Take care...

Karen
AKA
Orlando, FL


http://www.news8aust...n...040&SecID=2

[Amptrooper]

Well, I am seeing a pain Dr. now. He has me on Neurotin (again) and Tramadol and Elavil. So far the Tramadol and Elavil seem to help a little bit.
They said if noting works they have an implant that will take the pain I am feeling and turn it in to a nice soothing feeling. Not sure about that.
Has anyone heard of this before?

Thanks for all your input. Hopefully others are being blessed by this discussion as well.

[Lynne]

Well, I am seeing a pain Dr. now. He has me on Neurotin (again) and Tramadol and Elavil. So far the Tramadol and Elavil seem to help a little bit.
They said if noting works they have an implant that will take the pain I am feeling and turn it in to a nice soothing feeling. Not sure about that.
Has anyone heard of this before?

Thanks for all your input. Hopefully others are being blessed by this discussion as well.

Hi Amptrooper,
I assume you are talking about neurostimulation, if you google it there is lots of info out there.
I have heard of it and there is research proving that it works for some people.

Good luck with it all, hope you continue to get some relief from the drugs.

[Amptrooper]

Well, I am seeing a pain Dr. now. He has me on Neurotin (again) and Tramadol and Elavil. So far the Tramadol and Elavil seem to help a little bit.
They said if noting works they have an implant that will take the pain I am feeling and turn it in to a nice soothing feeling. Not sure about that.
Has anyone heard of this before?

Thanks for all your input. Hopefully others are being blessed by this discussion as well.

Hi Amptrooper,
I assume you are talking about neurostimulation, if you google it there is lots of info out there.
I have heard of it and there is research proving that it works for some people.

Good luck with it all, hope you continue to get some relief from the drugs.

Well, the drugs are not that great! I went to the pain Dr. again and they said to just stay on it. I would really like to just go back to the Lortab at this point.
I don't care if I get addicted to it as long as it helps. Stupid Michael Jackson! Had to go ruin it for everyone! Just kidding.

I think that is what it is called. Nerowhatsitwhat! Sounds good to me! I wonder which people it works for!

[whistonian]

Well, I am seeing a pain Dr. now. He has me on Neurotin (again) and Tramadol and Elavil. So far the Tramadol and Elavil seem to help a little bit.
They said if noting works they have an implant that will take the pain I am feeling and turn it in to a nice soothing feeling. Not sure about that.
Has anyone heard of this before?

Thanks for all your input. Hopefully others are being blessed by this discussion as well.

Hi Amptrooper,
I assume you are talking about neurostimulation, if you google it there is lots of info out there.
I have heard of it and there is research proving that it works for some people.

Good luck with it all, hope you continue to get some relief from the drugs.

Well, the drugs are not that great! I went to the pain Dr. again and they said to just stay on it. I would really like to just go back to the Lortab at this point.
I don't care if I get addicted to it as long as it helps. Stupid Michael Jackson! Had to go ruin it for everyone! Just kidding.

I think that is what it is called. Nerowhatsitwhat! Sounds good to me! I wonder which people it works for!

Hi Amptrooper,
Take a look at the reply I have received from Jim to my question under Amputee Related Links.