Emotions & Peripheral Neuropathy (Feet)

**TOBEY32** · 03-15-2012, 05:01 AM

It's not every day, but do you go through any of this?

At times, I feel my feet no longer belong to me. I'm attached to them, but they're no longer mine. Sometimes it's like they're no longer even alive, they're just there, but I can't separate myself from them.
They allow me to still stand and walk (and this is good), but now they seem like these "foreign" things to me. I'll look at them sometimes when undressing and think, "Who are you? What are you about? What have you become?" You probably think I need some meds right about now!
I always hold out hope that something could change. Always. But it can get one down.

David

Al · 03-15-2012, 06:20 AM

David, this is a larger neurological problem than simple neuropathy. (Oliver Sacks wrote of his own experience in A Leg to Stand On. It is worth reading.) You need to talk to a really good neurologist.

Al

**TOBEY32** · 03-15-2012, 12:45 PM

Al - are you saying that I'm "cuckoo for Cocoa Puffs", or that I might have a more severe case than most!?
People have mentioned PN medicine might make it better. Maybe it is something to look in to, even if the thought of adding another med to the mix is a turnoff...

**RudiK** · 03-15-2012, 01:23 PM

Hello Tobey, I'm suffering from PN as well, but I know my feet are still there. At least THEY make sure I know that they are there. I have no feelings on the outside from the ankle on down, but on the inside they itch when I move them, and they itch and burn when I walk, especially in the area where the toes "connect" to the feet and around the ankle area. They used to itch and burn all the time, even when I was resting, but 200mg Gabapentin taken at night have stopped the itching and burning when I'm resting. Has your doc done any tests, like circulation test (not sure what the medical turn for that is - maybe Al knows it) to make sure you have good blood circulation in your feet or any type of nerve testing?

Al · 03-15-2012, 02:06 PM

Originally Posted by TOBEY32

Al - are you saying that I'm "cuckoo for Cocoa Puffs", or that I might have a more severe case than most!?
People have mentioned PN medicine might make it better. Maybe it is something to look in to, even if the thought of adding another med to the mix is a turnoff...

You can choose whatever breakfast cereal you wish, David, though I personally prefer something less processed. But I think you have something that is not just peripheral neuropathy, because it involves more than sensory anomalies--like motor and autonomic nerves as well. I can't speak to Neurontin (gabupentin) and other nerve meds; I won't take any of them because they are not kidney friendly. I still suggest an ace neurologist who understands WG.

Al

**Sangye** · 03-15-2012, 03:04 PM

I feel that way about my entire body! I still don't even recognize this as me. I don't look at all the same, I don't feel at all the same, and I can't move at all the same. Who the heck hijacked my body?

**renidrag** · 03-15-2012, 11:55 PM

I look at my feet and wonder how they got so old, blue, red bumpy, itchy, hot, not being able to tell if they are cold or not. All at the same time. I did go to a really good neurologist and he did the tests on my legs, feet and arms and told me I had a moderate case of PN. He said I could take a drug for it and it may get better, but the side effect was weight gain and I was not going that route again. So when I sat in my chair I would turn my ankles as far as I could inside and out all the time I was sitting. I could feel like a tearing feeling in my ankles, any way, the swelling in my feet which "they" said would never go away is gone however the pins and needles remain. I too still don't have good feeling in the feet but I take solace in the fact that they still do work to some extent and certainly not as bad as three years ago.
Dale

**Hal** · 03-16-2012, 02:48 AM

Originally Posted by RudiK

Hello Tobey, I'm suffering from PN as well, but I know my feet are still there. At least THEY make sure I know that they are there. I have no feelings on the outside from the ankle on down, but on the inside they itch when I move them, and they itch and burn when I walk, especially in the area where the toes "connect" to the feet and around the ankle area. They used to itch and burn all the time, even when I was resting, but 200mg Gabapentin taken at night have stopped the itching and burning when I'm resting. Has your doc done any tests, like circulation test (not sure what the medical turn for that is - maybe Al knows it) to make sure you have good blood circulation in your feet or any type of nerve testing?

My feet are generally like this too. Need pain killers to mitigate the burning too. I find I walk slowly and gingerly when in bare feet, say in the bedroom and bathroom. I roll my eyes when I bump into something or walk on something and cannot feel it .. he he.

I do not think there is anything proactive we can do with this, just let the body heal over time. Each one of us will get differing amounts of sensation back depending on the original damage.

Hal.

**Sangye** · 03-16-2012, 05:33 AM

If you can get into a pool, it's very helpful to walk and do balancing exercises on your feet. There's no risk of falling, and you will stimulate the joint receptors that are still functioning. I don't have PN, but do have global deconditioning. Even after just 20 mins of walking and balancing exercises in the pool I have greatly improved balance and overall foot function. Start in deeper water (eg, shoulder depth) and see how you do after a few sessions.