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[Babaika]

Like others I have pain issues I can’t resolve neuropathy right foot and leg phantom pain and phantom sensation (left leg amputated above knee) sensation feels like I have a shoe on that’s a size too small very irritating and even painful. Both feet, yes both fell like something is shocking me and crawling inside very painful. It’s starting in my hands now. Been to 5 pain clinics and many Drs. No help I get very discouraged seems like will hurt from now on, well I’m 68 yrs. old so that’s something, so how long is from now on. Well enough of my complaining I know there’s a lot of worse than I am. Hope everyone has a good day. Any advice on anything will be appreciated.

[cyberbarn]

Goodness, that is a lot to put up with! I am sorry that Drs have been no help.

There are several (7!) non-pharmaceutical treatments for which there is a consensus for how well they work (there are many others that don't have evidence that they work very well). Have the pain clinics tried those? You can see them here in this peer reviewed review paper:

onlinelibrary.wiley.com/doi...

My academic background was neuroscience and I have mixed feelings about phantom pain. I love that it has given us so much more information about how the brain works (V. S. Ramachandran was one of my heroes when I was an undergraduate!) but at the same time I hate how our brains make so many people feel when it comes to pain.

[Babaika in reply to cyberbarn]

Thanks so much for the information. I don’t sleep much anymore so I started reading the information at the link you provided at 4:00am. They didn’t have much confidence in the meds. And I agree, tried amitriptriptyline didn’t help at all. Also mirror therapy didn’t help me. I have a prosthesis am I’m going to try walking again. I’m 68 years old and the fear of falling has a real grip on me, I’ve fallen before it’s a helpless feeling when you know it’s happening but can’t do anything about it. I’ve got two really big grandsons so I’ll put them on each side. Maybe that will help. Used to walk a mile a day just for exercise. Need to get out of this chair. Thanks again you were a big help. Glad I found this site and glad you found me.

[Batty1]

I have small fiber neuropathy (no known cause) and I have a burning skin sensation (like a sunburn but worse) across the tops of my feet, hands and occasionally entire body I can’t wear socks and I wear clothing to bed just to keep my skin from touching.. awful feeling and recently Ive been having what feels like electrical shocks to my one big toe and this is only at night time which causes me to stress out.

I use Australian dream cream when this weird shocking thing hits me and seems to be helpful and I also use it for my joints (I have psoriatic arthritis).

Anyway, I saw a show talking about people who lost limbs and how they have this sensation of still wearing a shoe or a glove apparently it needs specific therapy to retrain the brain. I don’t recall the actual name.

I read your response to cyberbarn maybe you should look into one of those walking walkers, its a walker that is high enough to keep you upright.

[katieoxo60]

Welcome to the site Babaika, you have a lot to contend with and pain is very individual even phantom pain. Have you ever been tried on pain releif that targets the brain for the phantom pain? Now walking even with a pro thesis can be daunting, I find going out easier with company, like you suggested your gandsons. I have arthritis in my feet , an artificial knee and recently I broke my foot from going out after many months alone., so appreciate your fear of falling.When you do go out its not normal and puts a lot of strain on other joints and falls are common if not steady. Sadly many amputees end up in a wheelchair. Glad you found Cyberbarns info interesting. Respect of feeling like a shoes on I sometimes feel like theres a wooden band round my knee , its our brain send mixed signals that are only replacing the pain signals . Any way have a good day or as best you can , stay safe

[MSTKing]

I take Pregablin (not sure if I have spelled that right) for my neuropathic pain. I also have an amputated leg as well as spinal cord injuries, so I know just how weird and infuriating (as well as painful) neuropathic pain can be. If you haven't been referred to one - ask to go to a pain clinic. If you've been to a pain clinic in the past it might be worth another visit.