Apparatus for Neuropathy

Posted by Rachel, Volunteer Mentor @rwinney, Jan 4, 2020

Staying on track with my new year mentality, I succumbed to a motorized cart for the firat time today in Target. Instead of being reclusive and housebound, I gave myself an opportunity by using a cart. My thought and question for you all is...considering my slow dragged out progression down hill, I'm left wondering when and how will it stop? Do any of you with SFPN use apparatus for walking due to your neuropathy? Has anyone ended up being wheel chair bound from neuropathy or the reversal, had their legs come back from such damage? Thank you for anything you are willing to share.
Rachel

Interested in more discussions like this? Go to the Neuropathy Support Group.

@phoenix0509

Hi Rachel. thank you for your kind words. I do not enjoy driving anymore. I can drive but pressing the brake or gas will make my feet hurt more. I usually ask my sister or brother to drive me to doctors appointments. I have gotten great at ordering things on line. I will drive when I absolutely need to but avoid it as much as possible. Your question about neuropathy. My understanding is that there are many flavors. Its an extensive topic. My understanding is that motor (muscle) neuropathy is best diagnosed through the EMG/NCS testing, and clinical exam. Autonomic neuropathy can be diagnosed through the use of the tilt table and sweat testing but maybe just by asking how are the nerves doing that control your bowels,heart rate ,blood pressure or sweating. (think of someone who has long standing diabetes) I have learned a lot from this forum. Continue to be an advocate for yourself, be a PITA because that seems to be what it takes to get movement,to get change,to get answers. The forum stays. Best, David

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I like your answer!

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@rwinney

...also, heat wraps! The only way my legs survive. I heat in intervals throughout the day so I can walk around my house in spurts. My pain and burning is throughout my body so I use multiple heat packs on legs, ankles, tops of feet, back, shoulder, neck. Im not diabetic and my feet have moved out of the burning phase since last year when ice was my go to with no socks and Epsom soaks. These crazy phases and stages. Last year I could not type this message due to debilitated hands. Now, they feel tight at most and I need to rest them. Prior, however, hands were submerged in cold water soaks, ice packs. Zaps, tingles and vibrations have dissipated, I believe, from Lyrica and possibly Acetyl L Carnatine and R Alpha Lipoic Acid supplements.

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@rwinney Rachel, Your illnesses really have a mind of their own. What you do, just to survive them, is amazing. What we all do to survive them, is amazing! I mean, it can take me a solid 10 minutes or more, to find a pair of shoes that do not hurt. And the next time I want to wear them, they kill me. Or, would my flip flops be better in the shower, or putting a wash cloth on the shower floor be better? Would Frankincense be better for the burning, or my CBD salve? The foot massager, or the hot water foot spa? This is all to just get by without throbbing, gnarly, pain. And it goes on all day like this! I carry various pairs of shoes in my car. Sometimes I can drive, and sometimes the pedal exacerbates so much pain, that I go back in my house. OY!!!!! All too much. I have to find a really good book to read. Sometimes reading is a great distraction, and fools my brain that I am ok for awhile. Sometimes reading is damn impossible. What can we all do? We are alive!!!!! Lori

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You are not alone, there are many comrades on this war of pain vs sanity! I really do understand your,no I don't "understand" any of this foot agony! There are some good ideas on this thread,none of which has helped me. However we do celebrate those that find a bit of relief.
God Bless you,Marianne

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@lorirenee1

@rwinney Rachel, Your illnesses really have a mind of their own. What you do, just to survive them, is amazing. What we all do to survive them, is amazing! I mean, it can take me a solid 10 minutes or more, to find a pair of shoes that do not hurt. And the next time I want to wear them, they kill me. Or, would my flip flops be better in the shower, or putting a wash cloth on the shower floor be better? Would Frankincense be better for the burning, or my CBD salve? The foot massager, or the hot water foot spa? This is all to just get by without throbbing, gnarly, pain. And it goes on all day like this! I carry various pairs of shoes in my car. Sometimes I can drive, and sometimes the pedal exacerbates so much pain, that I go back in my house. OY!!!!! All too much. I have to find a really good book to read. Sometimes reading is a great distraction, and fools my brain that I am ok for awhile. Sometimes reading is damn impossible. What can we all do? We are alive!!!!! Lori

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@lorirenee1 You, my dear, have outlined other challenges that face us daily...decisions. What clothes, what shoes, what medications will be the best today? Will I need topicals as well as something like a capsule or a tincture that will help with anticipated pain or discomfort? Sometimes we have to consider the weather, sometimes the activity, and even the vehicle we are driving. How far do we have to walk? How much do we have to carry? What kind of chairs will be there? Do we need a cushion, a warm wrap? What about gloves?

I try to think comfort when I make my selections. Those black boots are cute but too hard to get on. My hands are too numb to grab the zipper or the buttons. Forget the jewelry...it is just too much trouble. Some of us need special hygiene products. Better not leave home without them. Others need what @rwinney calls neuropathy apparatus. Is my walking stick in the vehicle? Will there be assistance at the market or the movie or the restaurant?

So....sometimes it is just easier to stay home. Yet, we need to get out there and play Mahjongg, Bridge, Cribbage, etc......for social interaction and an opportunity to find a distraction from pain and discomfort. Thanks for calling our attention to these daily struggles to live a somewhat normal life. Or is there a new normal today?

May you be free of suffering. Chris

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@artscaping

@lorirenee1 You, my dear, have outlined other challenges that face us daily...decisions. What clothes, what shoes, what medications will be the best today? Will I need topicals as well as something like a capsule or a tincture that will help with anticipated pain or discomfort? Sometimes we have to consider the weather, sometimes the activity, and even the vehicle we are driving. How far do we have to walk? How much do we have to carry? What kind of chairs will be there? Do we need a cushion, a warm wrap? What about gloves?

I try to think comfort when I make my selections. Those black boots are cute but too hard to get on. My hands are too numb to grab the zipper or the buttons. Forget the jewelry...it is just too much trouble. Some of us need special hygiene products. Better not leave home without them. Others need what @rwinney calls neuropathy apparatus. Is my walking stick in the vehicle? Will there be assistance at the market or the movie or the restaurant?

So....sometimes it is just easier to stay home. Yet, we need to get out there and play Mahjongg, Bridge, Cribbage, etc......for social interaction and an opportunity to find a distraction from pain and discomfort. Thanks for calling our attention to these daily struggles to live a somewhat normal life. Or is there a new normal today?

May you be free of suffering. Chris

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@artscaping Hi Chris, You wrapped it up! The crazy decisions we make all day long is in itself, exhausting. Nothing is just natural anymore. Nothing can be taken for granted. I never would have believed our lives would have came to this. And at some level, pain becomes boring!!!! We just want to think about something else. We want to have normal, healthy, stimulations; not this madness! So, I am going shopping. May not be able to have the strength to stand in line to buy anything, but still; I am going shopping! Hi Ho, Hi Ho...…...OY!!!!!! May you find the goodness in your day. Lori

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@maryv449

https://youtu.be/loUuq7rPTH0, here are some exercises for peripheral neuropathy and see if they help.

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@maryv449
The video you linked in this discussion might interest my wife. I watched a little and I really like Dr. Jo, she's a kick, great facial expressions. Thanks for posting this. Hank

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@lorirenee1

@artscaping Hi Chris, You wrapped it up! The crazy decisions we make all day long is in itself, exhausting. Nothing is just natural anymore. Nothing can be taken for granted. I never would have believed our lives would have came to this. And at some level, pain becomes boring!!!! We just want to think about something else. We want to have normal, healthy, stimulations; not this madness! So, I am going shopping. May not be able to have the strength to stand in line to buy anything, but still; I am going shopping! Hi Ho, Hi Ho...…...OY!!!!!! May you find the goodness in your day. Lori

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Agree!

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@artscaping

@lorirenee1 You, my dear, have outlined other challenges that face us daily...decisions. What clothes, what shoes, what medications will be the best today? Will I need topicals as well as something like a capsule or a tincture that will help with anticipated pain or discomfort? Sometimes we have to consider the weather, sometimes the activity, and even the vehicle we are driving. How far do we have to walk? How much do we have to carry? What kind of chairs will be there? Do we need a cushion, a warm wrap? What about gloves?

I try to think comfort when I make my selections. Those black boots are cute but too hard to get on. My hands are too numb to grab the zipper or the buttons. Forget the jewelry...it is just too much trouble. Some of us need special hygiene products. Better not leave home without them. Others need what @rwinney calls neuropathy apparatus. Is my walking stick in the vehicle? Will there be assistance at the market or the movie or the restaurant?

So....sometimes it is just easier to stay home. Yet, we need to get out there and play Mahjongg, Bridge, Cribbage, etc......for social interaction and an opportunity to find a distraction from pain and discomfort. Thanks for calling our attention to these daily struggles to live a somewhat normal life. Or is there a new normal today?

May you be free of suffering. Chris

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i love this - thanks - you sure tell it exactly like it is, and they go on and on - i get so worn out just with having to deal with all this stuff and more - and the doctors and the Rxs and the 8 AM phone calls from medical places when you finally fell asleep at 4 or 5 AM. There's no life left!

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@treziesmom

i love this - thanks - you sure tell it exactly like it is, and they go on and on - i get so worn out just with having to deal with all this stuff and more - and the doctors and the Rxs and the 8 AM phone calls from medical places when you finally fell asleep at 4 or 5 AM. There's no life left!

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this was supposed to be in response to @lorirenee1 re daily challenges. The way these posts and replies are set up can be confusing - maybe someone can make it better/easier?

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@treziesmom When you reply to a certain person put thev@before name before you begin your letter,like I did, understand

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