Last post Thu, May 29 2008 1:17 by Evangelist Dave Harper . 13 replies.
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.
Check this story out. Mirrors are being used to help treat phantom pain. Really cool!
Very interesting. I think it might be more for new amputees. But I'll give it a try.
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
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
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: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.
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
Yep. It's real. After 30 years, I still get it once in a while. I used to think I could predict it with weather changes, but it just happens out of the blue.
It'll make you jump, no question. I've taken tylenol with codeine, but not often, usually just to sleep, but plain old ibuprofen takes the edge off enough to tolerate it until it passes.
I generally just tough it out.
I never correlated the occurance of the pain with too much activity. I was at the cubs game on Sunday and crutched my arms off which is probably what brought it on. Like I said after 20 years I don't have it happen often but when it does it sucks! Sitting here just waiting for the next shock to hit. Thanks for all the advice - massaging it did help some.
hi, my name is betsy and i'm a new aka on my right side. I'm having alot of phantom pain especially after i've done too much moving around. I see a pain management dr. because i've had chronic pain for 3 yrs same leg. he told me that i need to adress the phantom pain issue as it will continue tor some time if i don't. i'm taking Lyrica which is a newer Neurontin which is being used for fibromyalgia and other aliments too like nerve pain. He told me i need to message the strump and keep touching it as much as i can. I bought a Wahl hand held messager which feels real good. i can also use it to give myself a facial. He is also giving me a tens unit that i think provides electrical stimulation to the nerves using low currents. I DON'T know alot about it yet cause i have an appt. next thursday.
hopefully, all the things i'm doing will start providing me with full-time relief. phantom pain is misrable. last week i was crying it was so bad and was ready to go to the er because no amonunt of pain med was working.
i feel for ya!
hey there i was on nuroton for phantom pain but it did very little. then the doc put me on lyrcia witch seemed to help alot but i still do get periodic sharp stabbing pains that feel like someone is crushing my foot i dont think it will ever go away ask your doc what he thinks about using lyrica
One thing I do that I have not read about is to deaden the nerve. I have a bamboo back scratcher that I tap the nerve bundle at the end of my stump. I start out softly and when I'm done I'm whacking that thing pretty good. It seems to cause an overload of pain input to the brain and it shuts down the pain receptors, kinda like when a body part falls asleep. And the pain is gone gone gone. Crude, but drug free. I don't get phantom pain much because I think I've trained them receptors, and they know the routine. Act up and get punished. Kinda like when I was young.
There is a chemical in our blood called Substance P, which carries the pain signal to the receptors in our brain, if you can interrupt the signal then you can find the relief you seek. I have had severe phantom pain for almost 4 years and it is real despite what the foolishness of those who do not suffer with it say. There is a cream that I use and produce for my company that helps me and many others very well with these symptoms. I have lived with severe chronic pain for almost 12 years and if it can help me sleep at night then that is saying some a lot. I am not here to push any products, that is not my purpose, but you asked if there was anything available to help and there is. Any one who would like the name of the product so you can read about how it works just let me know and I will send you a link.
