Phantom Pain : I have suffered with this since... - Pain Concern

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Phantom Pain

MichaelJH profile image
10 Replies

I have suffered with this since a BKA (Below Knee Amputation) in 2020. The last few days it has tended to start after I go to bed. I am tied and want to sleep yet suffer various pains (cramp, pain in ankle, burning in big toe area). It may take a couple of hours to drift off.

I am on 3 x 300mg Gabapentin daily but it doesn't help that much.

I have tried the various techniques to no avail so doubt there is a solution. Just wanted to vent!

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MichaelJH profile image
MichaelJH
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10 Replies
Trenholm profile image
Trenholm

Sympathise with you. Have nerve pain in my feet. Take gaba pentin too. Doesn’t really help. I’m going to try acupuncture

MichaelJH profile image
MichaelJH in reply toTrenholm

Let me know how it goes. As I understand it the needles are uduly used some distance from the pain source.

JeffMett profile image
JeffMett

I used to be on Gabapentin but now have gone to Pregabalin. I found it hard to come off the Gabapentin, but I would listen to your Doctors before doing anything.

TrinityMoon profile image
TrinityMoon

Hi Michael,I understand how frustrating this is. You could ask to try Pregablin but would advise to ensure you're not alone for the first week. I had a bad reaction and collapsed, my legs just went out from under me without any warning. I was put back on Gabapentin and eventually my meds were increase ( for nerve pain). I eventually was put on 600mg 3 x a day. My quality of life took a massive nose dive, I got easily confused, my memory was so bad it became dangerous and I became depressed, all known side effects but ignored by my care team. I now take 300mg morning, 600mg afternoon and 300mg night, I'm still experiencing pain but the brain fog is gone. Are your meds for nerve pain? You could ask for Amitriptyline at night, it helps me sleep through the night and my pharmacist explained that a gradual build up in my system helps with the pain through the day. I hope you get something sort, let me know if you've any questions

Zidowa profile image
Zidowa

H Michael, I take gabapentin and have done for a couple of years. I have swapped between this and pregablin. I used to take amatriptiline with it but didn’t help much. The pain clinic swapped me to nortriptiline which helps but i struggle with brain fog, not sure if this is the meds if fibro. Nortriptiline works well for me as a top up at night. Hope this helps , take care 😀

Crystalbowl profile image
Crystalbowl

Have a look at the Curable app and/or the pain habit.com

MichaelJH profile image
MichaelJH

It's bizarre as the mind must know it's missing through the eyes!

MichaelJH profile image
MichaelJH

Apologies for the delay in responding. Quite a few things to sort after a recent move including sourcing a food delivery.

MichaelJH profile image
MichaelJH

I replied easier as I was awake with phantom pain at 1:00am. Still awake three hours later. This is the worse it been for a year - not continuous but a stabbing pain in the foot that runs up the leg especially as I start to drop off. I've been to the loo twice and have now taken Oxy-codone in the hope of getting some sleep.

Imagine1 profile image
Imagine1

Hi, I feel so sorry for you. I can only imagine how you must feel. It isn't the same as you but I had a nasty fall downstairs 2 years ago and because I didn't get any treatment from the hospital even though I broke my ankle and foot, they never put it in a cast and I was told to walk on it. I have now developed a bad limp and I have been diagnosed with Complex Regional Pain Syndrome which used to be a phantom pain and wasn't recognised until recently. Whether you have got it too I would see your specialist and ask if you have this and see what he /she can do for you and see if there is any treatment that you can have. I wish you well and take care. x

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