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Post by pollislongus on Nov 2, 2016 12:42:51 GMT -7
I lost my legs in the army. I have a question about phantom pain. I still feel my feet they burn so bad i keep being told by v.a. that it is in my mind i want so bad for them to lose a limb just so they can feel what i feel. Its not in my mind.Burning cramping pain day and night and i lost then in 92. I have lower back pain too. Ive tried everything pain meds seem to help most. Does anyone feel the same? Question 2 i ask doctors this question with no reply. When you cut a nerve thats called nerological pain and thats considered pain but you cut all the nerves losing a limb its pyscological why? You cut all my nerves and telling me i should not feel it. Help
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Post by cherylm on Nov 3, 2016 2:49:29 GMT -7
I'm probably not the best person to answer your question, since I am a very lucky amputee who really hasn't had too much trouble with phantom pain...however, I fully agree with you that phantom pain is NOT "all in your mind." It's all in your BRAIN, and I'm convinced that your brain is responding to the pain impulses from all those severed nerves that were cut during your amputation. A brain-triggered pain response and "just thinking you're in pain" are completely different issues.
You say that you've tried "everything." Are there any solutions you've found that offer some level of relief, even if they're not as good as pain medication? The more ways you can find to distract yourself from the pain, the better. For me, I've found that heat and massage on the stump itself can sometimes help...but simply distracting myself with a hobby or reading or TV can get the pain kind of "tamped down" in the background.
I hope you get some suggestion from folks who have more experience with phantom pain...wish I could offer more help!
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Post by stonecutter on Nov 3, 2016 7:31:50 GMT -7
It's been 22 years since I lost my leg and in all that time I haven't found the words to explain to non-amputees what phantom pain feels like.
To you - it's as real as though something is still happening to your foot/feet. Others can't perceive that. How can it hurt if it's not there?
After my amputation, when I was still in acute care, there was a nurse who understood it well. She said that they can amputate your limb, but there's no procedure to erase it from the map of your body in your head. There's just nothing in our evolution that allows our brains to understand on a primal level that a limb is gone but we are still alive.
She was convinced that in cases where trauma is involved, the intensity and type of sensation an amputee feels is related to the type of injury. In a case like mine, where I was injured for three weeks prior to amputation with severe infection and suddenly my brain had to deal with the reality of a different type of post-amputation pain and the foot injury was suddenly gone. Her theory was that phantom pains were the brain's way of trying to figure out what's happened, and the last signal it got from down there was pain, so it fills in the blanks...
Although I still get days when I have phantom pains at intervals, they aren't as intense as they used to be prior to my revision surgery in 2012. They corrected the placement of a nerve ending during that surgery to make me more comfortable.
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Post by snowyh on Nov 5, 2016 2:55:23 GMT -7
i keep being told by v.a. that it is in my mind Tell them they're right, but that it's REAL pain and needs to be treated! I find it astonishing that the VA (Veterans' Administration), who has many amputee patients, would not at least have a sympathetic ear for those suffering from PP. It's true that most docs have no idea how to treat it... they generally ask ME what works! If you see a neurologist you should have better luck being taken seriously, even if they don't know what to do. There's actually ongoing research to figure out alternative ways (than drugs) to treat PP. Fortunately, my PP is not constant--it comes in episodes that generally last 2-3 days and can be mild to severe in intensity. My episodes are triggered by stress, so I am prescribed Lorazepam 1 mg to calm me down a bit. It doesn't completely eliminate the pain... just brings it down to a bearable level. If you're into a little light reading, I recommend a fascinating book, Phantoms in the Brain, by V.S. Ramachadran (a neurologist), who has done extensive research on the subject. You don't have to be a scientist to enjoy this book--it's an easy-to-read book written for the general public. Good luck to you! Helen
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Post by stonecutter on Nov 8, 2016 11:20:32 GMT -7
I've been thinking about this thread all day so far... This morning I woke up with my jolts of imaginary phantom pains every 20-30 seconds... Yup. Real.
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Post by Ann on Nov 11, 2016 4:54:02 GMT -7
Have to admit, I don't altogether agree with some of the theories around phantom pain, and do think the language used (Phantom) is a bit archaic and perhaps needs to be addressed as it doesn't really help explain a very painful condition and kind of suggests that people are imagining it, when they aren't. I also think that sometimes, having sat in many prosthetic clinics etc overhearing people being told, as I have been, that more or less any pain they try to explain is PP that it also sometimes prevents any real investigations into possible problems with our residual limbs, etc. etc.
I lost my legs when I was fairly young, back then I wasn't told anything about phantom pains, I never could 'not feel' my feet, if that makes sense, initially there was pain, it got less, I just called it nerve pain, but as time went on it didn't bother me too much. At that time I was very active, used to wear my legs all the time, didn't give them much thought, then about ten years later, ran into problems got an ulcer and couldn't walk. It went on for some months and then I realised what phantom pain was, at that time there didn't seem to be any pain meds that worked. What I found though, was once my leg healed and I got back walking again the PP more or less went away. This has happened numerous times since, when I have been off my legs, had a sore or infection or something similar.
What really made me realise that phantom pain could be physical was some years back when I was plagued with it and was fortunate that I got taken seriously I was given a very good ultrasound scan and I actually saw the nerve and all the little frayed bits off the end, were all wriggling about, and it was explained to me that the nerve was inflamed and irritated and that was what was causing the pain, you could actually see the ends of the nerve physically moving .... apparently these are the bits that can get knotted and form neuroma's, that is how it was explained to me. I also learned of damage within the leg from the original trauma, which till then I'd had no idea of, but was useful to know and be alert to pressure on those places from prosthetics etc.
So after surgery than yes I think you can expect PP's, like you say they have cut nerves, muscle etc too, but this often settles as you gradually heal. This has been brought home to me after a revision amp, where initially, I felt my 'feet' more alive than they every had been for over four decades, yet I had been am amputee throughout that time and not felt that. Someone told me that my brain had to get used it .... which I thought very odd having been an amputee for years, so I stuck to my own theories.
So what I have learned from all this is that there can be physical sources that cause us to feel real pain in our non-existent limbs, so whether it be things like neuroma's, spurs, prosthetic fitting, stress, cold weather, sores/injuries etc, walking too much, or too little and these can trigger PP. I find the cold weather in particular, especially if I am not using my prosthetics, so know to keep my legs warm. Its individual to all of us so think we just have to work out what triggers it for us.
Am not sure if my experiences have been helpful or not, interestingly I experience lower back pain also, suggestions have been made over a connection but no real answers on that. Maybe it would help you to keep some sort of chart and see if there is anything in particular that triggers it for you. Though would say to anybody who is really troubled by PP's to get their residual limbs and their prosthetics, if they are using them, checked out well.
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