Jump to content
Heather Mills - Amputee Forum
Sign in to follow this  
Guest Sair

Phantom Pains

Recommended Posts

Guest Sair

My aunt is suffering badly from phantom pains. She had to have an amputation due to bad health problems associated with her feet/leg (I don't know the details). For anyone reading who does not know what this is - she still feels pain although the source of the pain - her foot and leg - are no longer there. I understand this is quite common but is there anyway of relieving the horrible pain still felt?

I would dearly love to be able to help relieve my aunt of her suffering.....

Anyone know? :(

Share this post


Link to post
Share on other sites
Guest Dennis F. Nester

Sair,

I am a new amputee losing my left foot last Sept 10th. I noticed the few

times I experienced fantom pain...there was an expectation of pain...

a thought process which actually fueled the feeling of pain which made it

even worse and longer duration.

I found that recognizing I could stop the fantom pain by thinking that

(I love my fantom foot...I embrace you....you feel warm and toasty...and

you feel wonderful)....being sincere....really works...just BELIEVE and you

will discover a valuable lesson that we CAN change our perceptions and

frame of mind at will. Just like hearing a beatles song makes me smile!

Love,

Dennis

Share this post


Link to post
Share on other sites
Guest Guest

Sair,

The following is from "in Motion"

www.amputee-coalition.org/inmotion/nov_dec_01/prevention.html

and is only part of the information that they offer. Check out the link above for more good info for your Aunt.

"When the body is damaged (or during surgery), the broken cells release a group of chemicals that cause inflammation and stimulate our alarm system to notify our brain that something is wrong. The same alarm can be sounded directly by nerve sensors with alarms specifically for problems like temperature or pressure. This begins the process of the most common type of pain signals. This is where non-steroidal anti-inflammatory drugs, like ibuprofen, work to relieve pain. Also effective at this level are:

• Local anesthetics or numbing medicine, like Novocain

• Warm or cold packs

• Massage and some muscle relaxants

• Transcutaneous Electrical Nerve Stimulation (TENS) and Alpha Stim (a refinement on TENS).

It is also at this cellular level that proper stump-wrapping and prosthetic fit work to limit discomfort. For example, stump-wrapping aids blood flow back toward the heart (venous return) and in the repair of interrupted blood vessels responsible for the “throbbing pain” patients describe when they first put their remaining limb over the bedside.

All medicines have side effects, and pain managers will often combine safer low- potency drugs with more-potent drugs to get the best combination of safety and effectiveness. For example, natural pain relief measures like massage, warm packs and physical therapy are combined with the right medicines to obtain safe and effective relief. The pain signal then travels from the tissue level up through the nerves to the spinal cord."

I hope this helps you and your Aunt.

Share this post


Link to post
Share on other sites

Hello Sair, and any others interested in plp,

I have been an amputee since March 21st of 2002. I still experience some phantom limb pain, but have had success in reducing it.

The first thing that helped reduce my PLP considerably was when I was given a medication called neurontin. When I first started taking it, it took a little while to get into my blood stream and start working, but than made a world of difference.

Much later on, when I experienced an increase in plp with my regular dosage of neurontin, I looked into a treatment called EMDR (Eye Movement Desensitization and Reprocessing). After just a few treatments, I was able to reduce the amount of neurontin considerably that I needed to take. My plp is at its worse in the later part of the day, so that is when I use the neurontin. It helps me to have good nights of sleep. If you would like to find out more about EMDR treatment for plp, go to to Dr. Sandra Wilson and Dr. Robert Tinkers website who I received my treatment from. They have done the most work with this treatment for plp.

http://www.tinker-wilson-emdrs.com

I hope this information will help. Phantom limb pain has been a battle for me that I plan on winning. :P

Best regards:

Share this post


Link to post
Share on other sites
Guest Melissa A.

Hello,

I'm new to this group. I've been a double BK since 1994, which ended my professional Modeling career. My amputations were the cause of a careless drunk driver! :-(

I experience limb pain almost all the time. I get electrical shocking sensations with and with out the prosthesis.

The only thing that helps me is deep breathing and mediatation. The pain is never entirely eliminated, I get by one day at a time. I have tried prescription medications, electrical stimulation, professional massage treatments, etc.

If anyone has any suggestions or advice, please post!!!

Share this post


Link to post
Share on other sites

Hello Melissa A.,

Welcome to the group.

Look into the treatments that I mentioned in my previous posting of this topic. You may find some relief there as I did.

Best wishes and regards:

Share this post


Link to post
Share on other sites

:o HI SAIR..

WELCOME TO YOU AND YOUR AUNT...

:lol: MY NAME IS NIKI, IM 20YR OLD BRK SINCE JUNE2002...

I WAS IN A MOTOR VEHICAL ACCIDENT AND WAS TRAPPED BY THE LEGS 4 SEVERAL HOURS, SO THEREFORE I CAN EXPERIENCE NOT VERY NICE PHONTOM PAINS...

;) I AM TAKING A PERSCRIBED TABLET CALLED AMITRYPTALINE. IT HELPS KNOCK OUT THE PART OF YOUR BRAIN THAT THINKS YOU ARE STILL CONNECTED TO YOUR LEG. PHANTOM PAINS TO ME ARE THE LAST FEELINGS MY LEG HAD BEFORE AMPUTATED...

ANYWAY THEY WORK LIKE A CHARM FOR ME.. MAYBE YOU COULD ASK YOUR AUNTS DOC ABOUT IT?

:rolleyes: LUV NIKI

Share this post


Link to post
Share on other sites

:rolleyes: WELCOME MELISSA A...

I AM A BRK AGE 20,DUE TO A SERIOUS MVA WHICH CAUSED ME TO BE TRAPPED BY THE LEGS FOR SEVERAL HOURS JUNE 2002..

I AM VERY ACTIVE WORK IN HOSPITALITY AND HAD A SMALL INTEREST IN MODLING (due to my early years of dance,acting,modling,tap). NOW IM EVEN MORE DETERMINE TO ACCOMPLISH A SMALL CAREE IN MODLING! :unsure:

:( PHANTOM PAINS DISTURB ME TOO. I TAKE AMITRYPTALINE. ASK YOUR DOC ABOUT IT? IT REALLY TENDS TO HELP ME!

:D LUV NIKI

Share this post


Link to post
Share on other sites
Guest Sair

Thank you all for your positive responses. I sympathise with all of you who are experiencing this strange and exasperating problem. I have made notes of the details you have kindly given and will pass the information on to my aunt. I will let you know via this board if your suggestions have helped. :-)

Sarah

sarahsheraton@ntlworld.com

My Webpage

Share this post


Link to post
Share on other sites

You are welcome Sarah.

It is nice to hear from you again. The amputee forum has grown some since you made your initial post on February 27th, and it continues to grow. You are responsible for helping it's growth from the ground up resulting from your initial phantom limb pain question. A topic (PLP) that a lot of us here have to deal with on a daily basis. So you definitely hit home with a number of us here on the forum. I am sure that we haven't seen the last of the PLP discussion. Thank you for getting back to us.

Regards:

Share this post


Link to post
Share on other sites

:D Im glad that you have found this site, and im sure it will benefit both you and and your aunt in many ways..

:rolleyes: keep up the positive attitudes and your aunt will excell!

Keep in touch...

luv Niki... Australia :unsure:

Share this post


Link to post
Share on other sites

I had my left leg amputated below the knee on Sept. 16, 2002. My phantom pain is greatly reduced by the Neurontin (Gabapentin) I take (600 mg. 3 times / day).

My amputation was necessitated by the circulation problems brought on by 35 years of diabetes. For the last 20 years, I've suffered leg and foot pain from neuropathy. What I've noticed is the phantom pain I suffer is the same leg and feet pain I had from neuropathy. I haven't noticed any new types of pain in the phantom leg / foot. Is that what others notice?

Carl

Share this post


Link to post
Share on other sites

:wub: New article on pain by Lita Lee Ph.D.

Dr. Lita Lee is an old friend of mine and her enzyme therapy has given me

great relief from allergies and more. You can subcribe for her free TO

YOUR HEALTH online newsletter at: http://www.litalee.com and learn about

exciting new treatments such as SOUND THERAPY and much more...especially

for female problems.

Her new article on pain:

http://www.litalee.com/IDY055/FILES/Issue%...pril%202003.pdf

Love,

Dennis

Share this post


Link to post
Share on other sites

ilqemini,you and i have lost our limbs in the same circumstance ie diabetes,I thought I was the only one on here, I had my op in October 2002,I am interested to know from others such as yourself how you find your new leg etc.

I also have Gabapentin,but only have 300mgs at night which is adequate,yes I too have the same pain as pr-op, its because the brain hasn't got the message that the rest of your leg is no longer there and thinks the nerves are still in place

I'm a 56 year old female and have been a diabetic for 30yrs. :huh::huh:

Do you have any other diabetic related problems ?

My amp was for osteomyelitis, I've never had any noticeable circulatory problems.

:) :)

Share this post


Link to post
Share on other sites

Blossom,

I am mildly diabetic...I accidently burned my left foot on the hot sidewalk

here in Arizona which went septic a month later. I have always had very

bad luck with mainstream MD doctors...my mother had it too....they gave

her estrogen which I am sure caused her two strokes. We took care of her

for seven years...bed ridden, paralyzed on the left side, in constant pain,

she died in my arms of heart failure.

For my mom...Anna...LOVE YOU

Dennis

Share this post


Link to post
Share on other sites
Guest haloit

My husband passed away 2 weeks ago and I found this site by looking for an organization to take his discarded legs. Hence I'm here. After thirteen years and three amputations (actually 4 if we count the pinky that just caused his passing), I hope I have developed some sensitivity and knowledge to pass along. Both as a spouse of an amputee and just by listening and observing what Richard experienced.

As for phantom pain. Richard experienced what he described as leg aches at night. The doctor put him on Amytriptilene. One each night before bedtime. It helped his phantom pain and his aches. He started out about 4 years ago on 25mg. and had to have it increased over the years to 75mg. Understandable.

We were told that Amytriptilene has proven very successful with phantom pain issues and the dose is so small that there were no nasty side effects. He noticed the difference. Positively.

Share this post


Link to post
Share on other sites
Guest Sair

Hi everyone,

(See first post on this subject). I printed out all the replies from all you good people and now my Aunt Gwen (pictured here with her family) has been fixed up with a drug that helps enormously with her phantom limb pains. We both want to thank you all very much for your helpful responses. :D

post-3-1085569089.jpg

Share this post


Link to post
Share on other sites
Hello,

I'm new to this group.  I've been a double BK since 1994, which ended my professional Modeling career.  My amputations were the cause of a careless drunk driver!  :-(

I experience limb pain almost all the time.  I get electrical shocking sensations with and with out the prosthesis.

The only thing that helps me is deep breathing and mediatation.  The pain is never entirely eliminated, I get by one day at a time.  I have tried prescription medications, electrical stimulation, professional massage treatments, etc.

If anyone has any suggestions or advice, please post!!!

Melissa A!

Hi Im lesley and Im new to this board, and I know you posted a long time ago or just not recent, but I thought your story was interesting. Im a BKA and its been a year now. You said you were double amp? I just really wanted to ask you if we could be buddies and email back and forth, I guess knowing there are amps out there helps me to feel less alone. Mine was a trauma thing, my choice, life or death. and now I can do many things that I use to have trouble doing, like shopping, but some of it wears you out.

Im 17 I live in Tx and I found this site again. when I first had the amputation I tried here and I was too tired and sick to even care! But now a year later, I would love to make friends. That know exactly what I am talking about!! Its so neat to know I can have another extended family (amputees!)

I wont babble on! Because I know I do that alot.

I hope I get to talk to you soon.

Lesley

p.s there is some ways to get phantom pain relief: Get a heating pad and put it on the stump where its hurting. Then at night before you go to bed you can lay real stiill and pretend your on the ocean in a floatie and your having the time of your life or anything to get you relaxed.

Then if you can, get in a whirlpool and the whirls will massage your stump.

Again I hope this helps, I hope its not too late

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×