New To This... Advice And Answers Wanted..

Phantom pains – design a way out?



My name’s Zoe and I am a design student in London. I am developing a project around people who suffer from phantom pains, with the aim of developing a technique or product to relieve the pain.



To do this, I need to hear as many people’s experiences of phantom limbs and phantom pains as possible and I would be fascinated to hear about the techniques you have already developed to ease your pain, what tricks have you worked out to reduce the pain? Have you noticed a trigger to your phantom pains?



I want to work with people who experience phantom pains or people who have studied them (e.g. are knowledgeable about these pains or work with people who have them, such as in a clinic for prosthetics, etc.), to try and create an effective solution that perhaps in the long run, may benefit many people.



If you’re interested in being involved, then please send me a message where you talk about your experiences (and the experiences of other people you know), or, if you would like to participate beyond this, into helping develop a technique or product, then please include your email address in your message. Let’s get started!

depends on what you pains your haveing email me here or at me as friend and we can talk

thanks marko :) i;ll have to check out those patches. what are some secrets you know?

i call my stump numb it doesnt matter to me as far as phatom pains you can use catapres patches they work very well for stopping them and if you need to talk am here and can tell some secrects i have learnd to deal with it all anyway good luck marko

yea I use that term more than i use the term stump. there is just something about the word stump i'll never get used to

Has anyone yet told you the term "residual limb"? That is the correct term for stump.



I feel for you and others here... I too lost my leg to cancer when I was younger -- 16 years old. And that was 40 years ago. I have been on a prosthesis since then.

yea was in the clear, but it has come back. just posted a new story. back on chemo, and had more surgery on my residual limb. lets just hope all goes much better from here.

Glad to hear that you are in the clear. I take gapabentin for the phantom pain or more like electrical shocks to me. I call my amputated leg shorty. You can also do what they call desensitizaton by using soft clothes and progress to rough material. You take the material and rub it softly over the limb and as tolerated increase the texture. You can also take your hands and gently tap on the limb as tolerated and increase the pressure as needed. Hope this helps you. Wishing you all the best from a new bka.

I lost my leg 1968 when was 20 years ol.I'm a ak .Over time the pain gets less.when you get my pain I would play a vedio game and I would the total involed 100% . good read a great book.that helps my but now my pian not much

Heey did you have osteosarcoma? or some type of sarcoma? i hate that too!! - them calling it a stump. i call it my LITTLE LEG pehe

Hey! I lost my leg above knee 15 years ago due to cancer as well. I still don't like it when ppl call it a stump. I never really did tho. I usually just say 'my left leg' even tho part of it isn't there. i dunno. haha.

As for the phantom pain, i still get it once and a while, but very rarely. So that will get better. Sometimes if you rub the end of your 'leg' or even rubbing or squeezing your other good leg i find sometimes helps.

So good to hear there are no signs of cancer!

thanks everyone for the support and help. it has now been about 5 months, and things starting to get better. Pain is no longer as bad, getting really good with the crutches, and phantom pain has been less frequent. It's still hard at time, and im sure it always will be. I'm just happy cancer hasnt shown signs so far of coming back!

i lost my left leg in a 18wheeler accident,i think phantom pains will always will be there.mine have calm down alot i do not take any pain pills.rubbing the limb will help.it 's been 5months now and it helped me alot.hope it will do the same for u.

Sorry if the above quote is not clear....it is from an issue of the New Yorker. It is fascinating and now having amputated toes, I'm even more interested in the practice and theory

In the June 30, 2008, issue of the magazine, Atul Gawande wrote about the use of mirror therapy to solve cases of phantom-limb pain and unresolvable itching. Since then, a reader of the magazine has successfully used this technique to combat his anesthesia dolorosa, a condition involving the continuing sensation of pain in the face, even though the area is numb. His wife has posted their extraordinary story—including a visual demonstration of how they employed mirror therapy—on their blog. As Beth Taylor-Schott writes:



Read more: http://www.newyorker.com/online/blogs/tny/2008/09/mirrors-as-medicine.html#ixzz0o7aOitlr

But i consider that i lost a limb when my girlfriend died. It's comparable, i think, sometimes.

Every pain is pain, and everyone who is in pain, knows what pain is. And people in pain, commonly understands the other who suffers.

Every coin has two faces. Even a pain can be faced as a thing that is not bad. Sometimes.

Sometimes. If you have the proper situations, and philosofy-ability.



Hugs.

Best wishes [2]

sorry 2 hear about ur loss, but its not the end of the world. im an arm amp, so im not very familiar with ur situation, but there r more lifelike prosthetics available, ones that look like a real leg, maybe u could ask ur prosthesists about it. the correct term 4 ur stump is "residual limb", although i never minded the term stump, i guess thats a personal thing. as far as phantom pain is concerned, there r medications and therapies for that...but it will get better with time. best wishes 2 u!

Hey,

if you want to talk, i'm here, though i don't know many things about don't having a limb, cause it didn't happened with me yet.

But, some years ago, i was working with a research group on assistive technology. And i was on the web, searching for materials to read about this kind of things.

And... i don't know if you will use crutches or wheelchair... but i found on internet some sites of wheelchair users.

You can search on google "wheelchair junkies", and you will find some sites.

You can search on youtube too. There are many good videos about it. Look for "Wheel Chair Back Flip". You will be impressed how there are guys full of ability on a wheelchair.

And you, on google, can find many technologies and good links for this kind of situation. Like on the powerupwheelchairs site. I think that many persons on the same situation of you can be found at those links.

Bye.

God bless us.

Hugs.

thanks :) helps to know have support even with people i don't know.