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Posted on: Mon, May 19 2008 12:14 PM
Posted by: Misin1 Posts: 13
I rarely get phantom pain but when I do it can be brutal! Like right now. It is a periodic (every few minutes) and sharp stabbing pain like a nerve gone mad. It makes me crazy. Any good remedies out there? I am a AKA for 20 years so this is not a new problem just looking to see how others might handle this. I have tried heat, massage, elavil (yuk) It seems to bother me when there is a big change in the barameter. Odd.
Posted on: Mon, May 19 2008 12:22 PM
Posted by: Daniel502 Posts: 431
Check this story out. Mirrors are being used to help treat phantom pain. Really cool!
Posted on: Mon, May 19 2008 12:58 PM
Very interesting. I think it might be more for new amputees. But I'll give it a try.
Posted on: Mon, May 19 2008 3:02 PM
Posted by: ducky01 Posts: 153
I also experience phantom pain. Before I had my lower leg amp'ed, I had also had amputation of a toe a few years before, and was having phantom pain with that right up until the leg amputation. Never did figure out how to make it go away with the toe, but as for the leg, my therapist suggested massaging my stump, patting on it, and other wise stimulating the surrounding tissue on it. She said one of the problems is that my nerves are not recognizing that the leg is no longer there, and stimulating the stump tissue in this way helps the brain to recognize that the limb is no longer there, and lessen the pain. I guess for some folks, exercising the stump area also helps, but I'm not one of them. It seems the more I exercise, the more the phantom ouchies come back to disturb me a couple of hours later. So far, the massaging of it seems to help the most. As I've been healing, I've found it happening less often, thank goodness. I was also taking Baclofen for a while, which also seemed to give me some minor relief from phantom pain and spasming. I've heard some folks say that Neurontin helps, but I have never tried it. I hope this helps in some way!
hugs from ducky
Posted on: Tue, May 20 2008 1:21 AM
Posted by: Becky Posts: 1,555
Hey Mis. I get phantom pain too, but only generally when I've been up on my "feet" for too long, LOL. I hate it though. It's so intense sometimes that I gasp at the sharpness of it. In fact, I have it right now. I was up shopping a lot today and I am miserable now. I need to get my leg off and my shrinker on. I take Neurontin for PP, that's probably why I don't get it too often. I have tried to wean off it by decreasing it very slowly, but that didn't work and I have to stay on it. I'll get almost like a "restless stump syndrome," if I don't take enough Neurontin. I get terrible shocks in my stump and I have to move it around alot. I had a lot of surgeries on it, so I have a lot of nerve damage. I'm going to try the massage that Ducky suggested here and on another post. Good luck to us all!!!! LOL
Becky
Posted on: Tue, May 20 2008 1:23 AM
Oh Daniel. Very interesting story, about the mirror therapy. It must be some kind of proprioception thing or something. weird! I wonder if it's all in our heads? Naw, I don't think so. but still it's weird!
Posted on: Tue, May 20 2008 4:22 AM
Becky:Oh Daniel. Very interesting story, about the mirror therapy. It must be some kind of proprioception thing or something. weird! I wonder if it's all in our heads? Naw, I don't think so. but still it's weird! Becky
According to my doctor, not all of it is all in our heads. Some of it is in our nerves. They do not recognize that the limb is gone, and continue to try to "work" the limb for some time. It's their way of keeping the limb from atrophy - they sort of automatically tell it to move if it has been sitting still for too long. If it doesn't move, the nerves keep sending signals to the brain that something is wrong, and the only way the brain knows to tell the person that something is wrong is to react and cause the remainder of the limb to "jump" or tingle, or experience pain, cramps, etc. I guess in a lot of cases, the phantom pain WILL diminish over time, but there have been cases where it continues as a lifelong thing. I guess it all depends on how lively the nerves remain over the years. I'm just hoping I can stick with the majority and not have it be a lifelong thing, because it is very annoying when Nubby suddenly decides to start dancing all by itself while I am out and about, not to mention painful when a cramp hits.
Posted on: Tue, May 20 2008 5:03 AM
Posted by: newdawn Posts: 105
Hello there. I have been both single, double below knee and now 8 amputations later i am now bi-lateral AKA since Nov 2006. In England they tend to use a drug called Amytriptaline (usually 75mg to start with). Can have a few side effects like difficulty in urinating....not that you can't go...just have to concentrate!! The only way I have dealt with it is to poke and massage like a nutter until it passes. I have definitely found that it usually happens worse when you have done too much!! The brain tries to 'find' the missing limb again. Over here, when amputations are done, we are left on a complete epidural/spinal block for 4-5 days to get over the worst of it....seemingly the idea came from surgeons in the States and it is now the most common way of dealing with this problem. Following the surgery, lots of physiotherapy exercises and lots of gentle massage.
I know it will not gel with a lot of people but I have also found amethyst crystal and bojii stones particularly helpful when I have a bad bout that seems to go on periodically for days. Another VERY good therapy to try (let's face it, it does nearly make you wet yourself when it's happening!) is Reiki. Speaking as a massage therapist, it certainly does seem to make a huge difference when there is not a build up of lactic acid in the residual limb!!
Who hears me when I say its a bit of a pain when it happens when you are driving and you almost leap out of the seat at a junction/roundabout??!! Ha Ha, not funny but in a way you have got to laugh!!
Hope this helps, take care
Dawn
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