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Chrissy

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Hi everyone. My name is Chrissy and I am a new amputee hoping to get some advice about my phantom limb pain. I had a hip disarticulation of my left leg 5 weeks ago on Feb 10th. For the first week post-op in the hospital, all I had were phantom sensations and was doing great. I didn’t have any pain at all. Then when I came home from the hospital, that is when it started. It was unbearable! I was having constant intense electrical shocks through my phantom foot every few seconds. It never let up.

That is what I have been living with for the past four weeks and nothing has changed. I can’t sleep at all and just lay in bed at night and cry. I feel like I am going to go crazy. I was sent to see a pain management doctor. He has me on 300 mg of Gabapentin and 4mg of Dilaudid four times a day. All the medicine has done is take the edge off the pain a bit but has not given me any real relief. The only relief I seem to get is the few minutes I am in the shower and the hot water runs over my stump. The pain doctor has told me that most likely I will have to live with this pain for the rest of my life. Needless to say, I am going to find another pain doctor! If I didn’t have this pain, I would be fine. I could go back to work. I have spent hours reading the posts here and there just seems to be so many things to try and no definitive answer. I am just hoping that when I begin to use my prosthestic in two months it will help relieve the pain.

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Good morning Chrissy,

I found that a whirlpool tub or a hot tub helps my phantom pains. Some people have tried acupuncture and they claim it helps. Read up on all the phantom pain forums in here.. Jerry

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Hi Chrissy,

It sounds like the pain doc was running the usual course with the Gabapentin..It seems pretty standard issue..

I had found that acupuncture works well for me.. I was actually doing it for hyper-sensitive skin on the side of me that the car hit, but I found it helped on the phantom pain as well.. Now when the acupuncturist does it, he also puts needles directly in the end of my stump..

I still have some twinges when a storm is coming in, but nothing like the they were.

I wish that I could assure you that the phantom pains will lessen with time, but I can't and won't. Mine got a whole lot more manageable when I started taking some potassium supplements. Seems odd, but it worked for me..it did help.

BTW..... welcome to the forum...

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Welcome to the forum, Chrissy. I'm sorry you're having so much pain. There are others here who experience intense phantom pain and may be able to offer some helpful advice.

Fortunately, I am not bothered too much with it. I do have the occasional zingers and zappers and I can't imagine how awful it must be to have that ALL the time. I truly hope you find a solution.

May the force be with you.

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Hi Chrissy

I was very similar to you in that while in hospital I didn't have any pain just a dull sensation but once I had been home for a couple of weeks the pain sure did start to kick in. (I am an above knee) I was also on Gapentin but got taken off this and put onto Pregabalin by my doctor which did help. Also I used to continually rub my stump to help ease the pain!! When I 'eventually' got an appointment through at the pain clinic the pain had eased alot.

Something I have also tried is mirror therapy and this really has worked for me. If you go onto You Tube and type in 'mirror box therapy' there are videos explaining how it works, although they use the arm to explain the technique. I have a free standing full length mirror at home which I use and put side on so that it is between my legs. My stump goes behind the mirror and my good leg in front so that in the reflection I see another good leg. I rub my stump with one hand (behind the mirror) and my good leg at the same time (in front if the mirror) with my other hand so that in the mirror it looks like I am rubbing two good legs. Its a bit of a mind trick really but it does seem to help!!

Hope I have explained this ok??? and that it might be of help. I still get pain now and again and I always have the sensation of having part of a leg and a foot which sometimes feels like it is in a vice but I can put up with this!

Take care

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Hi everyone. My name is Chrissy and I am a new amputee hoping to get some advice about my phantom limb pain. I had a hip disarticulation of my left leg 5 weeks ago on Feb 10th. For the first week post-op in the hospital, all I had were phantom sensations and was doing great. I didn’t have any pain at all. Then when I came home from the hospital, that is when it started. It was unbearable! I was having constant intense electrical shocks through my phantom foot every few seconds. It never let up.

That is what I have been living with for the past four weeks and nothing has changed. I can’t sleep at all and just lay in bed at night and cry. I feel like I am going to go crazy. I was sent to see a pain management doctor. He has me on 300 mg of Gabapentin and 4mg of Dilaudid four times a day. All the medicine has done is take the edge off the pain a bit but has not given me any real relief. The only relief I seem to get is the few minutes I am in the shower and the hot water runs over my stump. The pain doctor has told me that most likely I will have to live with this pain for the rest of my life. Needless to say, I am going to find another pain doctor! If I didn’t have this pain, I would be fine. I could go back to work. I have spent hours reading the posts here and there just seems to be so many things to try and no definitive answer. I am just hoping that when I begin to use my prosthestic in two months it will help relieve the pain.

Hi Chrissy

Sorry you are having so much pain. I only have ever had the electric shock type pains occassionally for short periods and think they are horrible, so goodness how you are managing with them all the time.

I recently had a revision amp., and also didn't find I had much pain the first week while in hospital, I did get more pain once I got home and started moving about more, this increased when I started physio etc. Have the pain people suggested checking out your stump, as I found a lot of people were saying 'its phantom pain, and gave me painkillers', but it didn't go away and by then I was walking on the pam aid and the check socket prosthesis. One of my consultants organized for me to have x rays and ultra sound on the stump, we found that the nerve severed in the op was very inflamed as well as a few other minor things, but this was about probably 8 or 9 weeks post op for me, so further on from you. Mine did settle down, and I think maybe it just needed a bit more healing time, this might or might not be the same for you, but five weeks is still quite early days. If you can it might be worth getting them to check it out.

Ann

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Hi everyone. My name is Chrissy and I am a new amputee hoping to get some advice about my phantom limb pain. I had a hip disarticulation of my left leg 5 weeks ago on Feb 10th. For the first week post-op in the hospital, all I had were phantom sensations and was doing great. I didn’t have any pain at all. Then when I came home from the hospital, that is when it started. It was unbearable! I was having constant intense electrical shocks through my phantom foot every few seconds. It never let up.

That is what I have been living with for the past four weeks and nothing has changed. I can’t sleep at all and just lay in bed at night and cry. I feel like I am going to go crazy. I was sent to see a pain management doctor. He has me on 300 mg of Gabapentin and 4mg of Dilaudid four times a day. All the medicine has done is take the edge off the pain a bit but has not given me any real relief. The only relief I seem to get is the few minutes I am in the shower and the hot water runs over my stump. The pain doctor has told me that most likely I will have to live with this pain for the rest of my life. Needless to say, I am going to find another pain doctor! If I didn’t have this pain, I would be fine. I could go back to work. I have spent hours reading the posts here and there just seems to be so many things to try and no definitive answer. I am just hoping that when I begin to use my prosthestic in two months it will help relieve the pain.

Hi Chrissy I Am also a new amputee since March 10th 2009 ( below the knee ) i haven't had any phantom pains as of yet but i'm sure i will the only thing i have had is phantom feelings where it feels like my foots itching or my toes are moving but i'm still on pain meds till i go get my stiches out in 2 weeks but i know when it gets about time i'm due to take my pain pill i feel some pain i just take it day by day i'm sure i'll be feeling pains like that later on too just hang in there you got alot people on here who care

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Hi Chrissy

I've had those pains, but my amps aren't at such a high level as yours. I think I once read somewhere that the higher the amp level, the greater the chance of PLPs? But, don't let that information defeat you! :smile: I have a few suggestions for you -

To try and stop your PLPs, you need to make sure that you're getting a good diet ~ a nice balanced diet with all the vitamins and minerals you need. Also, make sure that you're well hydrated - don't drown yourself in water, but make sure you drink enough ... and not just loads of tea and coffee.

You also need to check out your pain tabs and see if their side effects include water retention ... I know that Diclofenac (a pain med) has high sodium levels and so you tend to retain water and look as though you've put on weight. If your pain tabs do have the ability to help you retain water, you need to find another alternative. Swelling will irritate an already irritated nerve and the PLPs will start.

Make sure that your spine is OK - get it checked out, if possible.

Try not to worry about being awake all night - take nice books and/or music to bed with you and enjoy the time you're awake ... you'll find that if you relax then you'll probably fall asleep ... even if it's for a short time, it's something. :smile: If you're tired during the day, then nap when you can during the day, but try and limit it to the morning.

Also, try and swim a little - it's relaxing and the exercise will be really good for you and help you to sleep.

Then, you want to look at alternative remedies - acupuncture, possible further surgery on your nerves, homeopathy, massage & relaxation, TENS ... etc. You could try looking here ~ http://www.painclinic.org/ (I've had a lot of help from the owner of the site).

And, remember that even if you can't find a tablet to dull the pain enough, there are ways to cope with the pain AND enjoy your life - I promise you! :smile:

Take care & PM me if you need to.

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