Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

I've been taking Gabapentin for about 4 years and it is1800 mg a day I've checked with Loma Linda about their INF treatment I am trying to my best and praying and asking help to quit drinking coffee because I have heard from the American diabetic Association being type 2 myself that the coffee the caffeine is not good for nerves and the coating on the nerves and that it makes the neuropathy worse also chocolate and sugar is a poison to the nerves into diabetic berries and avocados and spinach and spinach is hard to add to my diet but I'm trying to do that trying to improve my A1C has come down from 6.4 to 6.1 I just pray and turn to the Lord Jesus Christ he's a great position he's helped me through many other medical things I've had melanoma surgery I've had all kinds of mental health issues like anxiety disorder they misdiagnosed me for 4 years they the Lord finally sent a doctor that put me on the right medication that help me I was able to sleep better I was able to start driving a car again I was able to concentrate and watch TV and read again the Lord is a great position and he will use anything to get our attention to turn to him from the things of the world and to put him first because he died on the cross for our sins and he wants us to turn from sin and the world and our self and turn to him as a great Lord and God and savior that he is

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@johnbishop

Welcome @monive, I think we all worry about the progression of our neuropathy condition. There is another discussion you might find helpful since it sounds like you also only have numbness and tingling symptoms.
--- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/.

The Foundation for Peripheral Neuropathy has some suggestions on Living Well with neuropathy here that might be helpful - https://www.foundationforpn.org/living-well/.

How long have you had the neuropathy symptoms before you went to a neurologist for a diagnosis?

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That lifestyle changes are very good tweaking your diet exercise plenty of water I don't sit too long and also coffee or anything with caffeine sugar is a poison to your nerves and also eat add berries vegetables spinach fruits natural sugar things that are good for you do not eat unhealthy fats all these things make a difference exercise makes a lot of difference Loma Linda University has an INF neuropathy treatment that may help if you can afford it there may be places close to you that can help a little bit I don't think they Chiropractic help very much I've even had a chiropractor tell me that they just are temporary fix how about your your exercise is very important your diet is very important and also I I couldn't make it without the Lord I don't know what I would do the Lord save me from misdiagnosis by doctors for 4 years I was misdiagnosed for depression when I actually had anxiety I went through all kinds of medication even shock treatments that didn't help and then after about 4 or 5 hospitalizations the Lord help send send a doctor to me that it gave me the right medication that I've been on since the 90s it's helped me I'm 73 now and it doesn't cost me any problem I was told I would have to keep taking more and more and I actually take less now it's been a big help to me and the Lord was the one he's the great physician he's the one that helps when doctors cannot help he uses doctors but he is Lord God and in control of everything and he uses everything to get her attention that we will turn to him from our sins and trust in him as our savior and I urge you to do that and look to Jesus Christ he died for you on the cross he rose from the dead because he is God he is able to do anything and just trust in him and ask him the Lord says I ask of him wisdom and he will give it to you if you are one of his and follow him

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@monive

Hi, I am new to this site and have enjoyed reading many of the comments. I have PN in feet and lower legs and hands. This came about very slowly and I only a year ago got diagnosed. I don't have diabetes and was DNA tested to see if it was hereditary (not). I have been seeing a neurologist for about a year but nothing has really stopped it progression. I am lucky in that I have almost no pain just tingling. I am worried about it's progression. Any advise
? Thanks

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Your symptoms sound similar to mine but I also have major balance problems. My father and one sister had similar problems so I believe mine is most likely heredity.

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I am 55. I can provide some insight about Peripheral Neuropathy with no harm to discourage you. But, I am a diabetic II since 2017 (after stroke) which was not known beforehand. My PN (feels as walking barefoot on broken glass) started approximately 2018 with my toes then affected my feet. They became tingling and numb but I just ignored it and thought it would just go away in time. I was deadly wrong!

Then, early 2019 is when PN start to escalate it moved upwards to calves and thighs then waist. Sadly, I became impotent and barely able to walk and painful nerve shocks started to occur within my entire legs. And I started to lose a lot of weight. I used to weigh 170 and weight shrunk drastically to 109 with severe PN and diabetes.

Initially, I visited emergency rooms, hospitals, clinics, neurologist, etc as PN became so unbearable and extremely painful ! ALL doctors and specialist only provided band-aids to help ease the discomfort such as gabapentin, juniva, insulin, deloxine, etc which was a waste of time and of course, lots of money. The ultimate cure was to amputate toes, feet, and/or legs. THIS IS ABSOLUTELY NOT AN OPTION AS I COULD NOT LIVE WITH IT !!!

I wear special shoes with cushions to help walk as I still do not feel my feet (tingling and numb) and barely my legs plus unfortunately impotent until this day. Now, I am insulin dependent as I check my glucose 3 times a day. I have short and long lasting insulin injections to help drop my glocuso especially when I eat and as far as PN, I ignore the discomfort and pain. And take rubbing reliefs such as Vapor Rub and Icy Hot, etc. and heavily rely on sleeping pills in hope I do not overdose on them….

My A1 for the past year or so, 10.9 , 9.8, 10.3 and unable to lower at a normal range for many years...

To say the least, I constantly worry that these medical conditions will eventually get the best of me but continue to pray that I will be ok.

Please exercise and eat healthy!

Good Luck!

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@michhino

I am 55. I can provide some insight about Peripheral Neuropathy with no harm to discourage you. But, I am a diabetic II since 2017 (after stroke) which was not known beforehand. My PN (feels as walking barefoot on broken glass) started approximately 2018 with my toes then affected my feet. They became tingling and numb but I just ignored it and thought it would just go away in time. I was deadly wrong!

Then, early 2019 is when PN start to escalate it moved upwards to calves and thighs then waist. Sadly, I became impotent and barely able to walk and painful nerve shocks started to occur within my entire legs. And I started to lose a lot of weight. I used to weigh 170 and weight shrunk drastically to 109 with severe PN and diabetes.

Initially, I visited emergency rooms, hospitals, clinics, neurologist, etc as PN became so unbearable and extremely painful ! ALL doctors and specialist only provided band-aids to help ease the discomfort such as gabapentin, juniva, insulin, deloxine, etc which was a waste of time and of course, lots of money. The ultimate cure was to amputate toes, feet, and/or legs. THIS IS ABSOLUTELY NOT AN OPTION AS I COULD NOT LIVE WITH IT !!!

I wear special shoes with cushions to help walk as I still do not feel my feet (tingling and numb) and barely my legs plus unfortunately impotent until this day. Now, I am insulin dependent as I check my glucose 3 times a day. I have short and long lasting insulin injections to help drop my glocuso especially when I eat and as far as PN, I ignore the discomfort and pain. And take rubbing reliefs such as Vapor Rub and Icy Hot, etc. and heavily rely on sleeping pills in hope I do not overdose on them….

My A1 for the past year or so, 10.9 , 9.8, 10.3 and unable to lower at a normal range for many years...

To say the least, I constantly worry that these medical conditions will eventually get the best of me but continue to pray that I will be ok.

Please exercise and eat healthy!

Good Luck!

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Sounds a great deal like my peripheral neuropathy. I am a Vietnam Veteran and I got sprayed with Agent Orange In Vietnam. In the treatment of my non Hodgkin's lampoma, I went through a several montis of Rchop therapy. R chop seem to only make the peripheral neuropathy worse. My newest extension is that I now (about 3-monthd ago) have heal spurs on both of my feet. Spend most of the time with my heels on ice or in a sitzs bath.

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@michhino

I am 55. I can provide some insight about Peripheral Neuropathy with no harm to discourage you. But, I am a diabetic II since 2017 (after stroke) which was not known beforehand. My PN (feels as walking barefoot on broken glass) started approximately 2018 with my toes then affected my feet. They became tingling and numb but I just ignored it and thought it would just go away in time. I was deadly wrong!

Then, early 2019 is when PN start to escalate it moved upwards to calves and thighs then waist. Sadly, I became impotent and barely able to walk and painful nerve shocks started to occur within my entire legs. And I started to lose a lot of weight. I used to weigh 170 and weight shrunk drastically to 109 with severe PN and diabetes.

Initially, I visited emergency rooms, hospitals, clinics, neurologist, etc as PN became so unbearable and extremely painful ! ALL doctors and specialist only provided band-aids to help ease the discomfort such as gabapentin, juniva, insulin, deloxine, etc which was a waste of time and of course, lots of money. The ultimate cure was to amputate toes, feet, and/or legs. THIS IS ABSOLUTELY NOT AN OPTION AS I COULD NOT LIVE WITH IT !!!

I wear special shoes with cushions to help walk as I still do not feel my feet (tingling and numb) and barely my legs plus unfortunately impotent until this day. Now, I am insulin dependent as I check my glucose 3 times a day. I have short and long lasting insulin injections to help drop my glocuso especially when I eat and as far as PN, I ignore the discomfort and pain. And take rubbing reliefs such as Vapor Rub and Icy Hot, etc. and heavily rely on sleeping pills in hope I do not overdose on them….

My A1 for the past year or so, 10.9 , 9.8, 10.3 and unable to lower at a normal range for many years...

To say the least, I constantly worry that these medical conditions will eventually get the best of me but continue to pray that I will be ok.

Please exercise and eat healthy!

Good Luck!

Jump to this post

i am dealing with it by doing 5 exercises 3x a day under the guidance of a pt specializing in neuropathy and taking half pilll of Effexor 2x per day-itis a constant struggle for the rest of our lives-I alsoo pray the Rosary which helps most of all-Mike Storman

REPLY
@michhino

I am 55. I can provide some insight about Peripheral Neuropathy with no harm to discourage you. But, I am a diabetic II since 2017 (after stroke) which was not known beforehand. My PN (feels as walking barefoot on broken glass) started approximately 2018 with my toes then affected my feet. They became tingling and numb but I just ignored it and thought it would just go away in time. I was deadly wrong!

Then, early 2019 is when PN start to escalate it moved upwards to calves and thighs then waist. Sadly, I became impotent and barely able to walk and painful nerve shocks started to occur within my entire legs. And I started to lose a lot of weight. I used to weigh 170 and weight shrunk drastically to 109 with severe PN and diabetes.

Initially, I visited emergency rooms, hospitals, clinics, neurologist, etc as PN became so unbearable and extremely painful ! ALL doctors and specialist only provided band-aids to help ease the discomfort such as gabapentin, juniva, insulin, deloxine, etc which was a waste of time and of course, lots of money. The ultimate cure was to amputate toes, feet, and/or legs. THIS IS ABSOLUTELY NOT AN OPTION AS I COULD NOT LIVE WITH IT !!!

I wear special shoes with cushions to help walk as I still do not feel my feet (tingling and numb) and barely my legs plus unfortunately impotent until this day. Now, I am insulin dependent as I check my glucose 3 times a day. I have short and long lasting insulin injections to help drop my glocuso especially when I eat and as far as PN, I ignore the discomfort and pain. And take rubbing reliefs such as Vapor Rub and Icy Hot, etc. and heavily rely on sleeping pills in hope I do not overdose on them….

My A1 for the past year or so, 10.9 , 9.8, 10.3 and unable to lower at a normal range for many years...

To say the least, I constantly worry that these medical conditions will eventually get the best of me but continue to pray that I will be ok.

Please exercise and eat healthy!

Good Luck!

Jump to this post

I hope that I'm not repeating this too often but Loma Linda has what they describe as a Cutting Edge neuropathy treatment and it doesn't sound super expensive for most people it's not covered by Medicare but I can't really afford it right now but I'm still looking to try to look look into getting the treatment somehow you can talk to them on the phone they will set up a video conference call with one of their MDS and they will describe the treatment with you and the cost and it is pretty reasonable if it helps they say it helps some people enormously they sent me a packet with a lot of information in it and I'm really interested in it I'm type 2 diabetic and I've had neuropathy I'm on gabapentin quite a big dose

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@magg

Thanks for the info, John. I've read quite a bit on SFSN, and my symptoms are identical to everything I read on the disorder. I have no difficulty walking or moving around. Besides the gabapentin, I also take a number of supplements, including B12. That really helped the worst of the pins-and-needles and electric shock-like symptoms to dissipate when I had a flare-up a couple years ago. The only other issue I have is painful, sometimes disabling cramps in my feet and legs, mostly at night while at rest. But I think that might be a separate disorder from the neuropathy. I've heard from doctors that a lot of us "older folks" (I'm 67) have the problem, especially in the evening. It's pathetic that no one in the medical community can offer any help to the millions of people who have these problems. For me, the cramps are worse than the neuropathy. I've tried OTC creams and lotions, taking Hyland's pills, stretching exercises in the evening, massage, and even drinking pickle juice. Any other thoughts on how to combat the nighttime cramps?

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I was experience cramps in my left foot, EVERY morning, at about 3:00am. Once it started, it wouldn't stop, even walking around & stretching wouldn't help. The minute I laid down again, the cramping started. Saw on YouTube a video about vinegar. I started doing 1 tablespoon of Bragg organic vinegar, in 4 oz of water & lemon, 3 times per day. I have not had a cramp since I started the vinegar, about 2 weeks ago. If you're at the stage where you will try anything, do this, but keep up your other OTC routines. Magnesium or mag oil is vital too. I usually take a swig of pickle juice at lunch too.

REPLY
@monive

Hi, I am new to this site and have enjoyed reading many of the comments. I have PN in feet and lower legs and hands. This came about very slowly and I only a year ago got diagnosed. I don't have diabetes and was DNA tested to see if it was hereditary (not). I have been seeing a neurologist for about a year but nothing has really stopped it progression. I am lucky in that I have almost no pain just tingling. I am worried about it's progression. Any advise
? Thanks

Jump to this post

Hello Monive~
I've been suffering from PN for over a year now.....hoping it would go away like it came on..but no...it got to point to where I wasn't able to sleep for more than an hour at a time..being awakened in terrible leg pain..numb toes. I just tried taking a supplement called Benfotiamine 150mg. once a day. In two days..TWO DAYS...almost ALL of my symptoms have just gone away! Check this out on google...very interesting indeed! I feel like I've had a miracle healing!
Bless you all....

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@cher27

I was experience cramps in my left foot, EVERY morning, at about 3:00am. Once it started, it wouldn't stop, even walking around & stretching wouldn't help. The minute I laid down again, the cramping started. Saw on YouTube a video about vinegar. I started doing 1 tablespoon of Bragg organic vinegar, in 4 oz of water & lemon, 3 times per day. I have not had a cramp since I started the vinegar, about 2 weeks ago. If you're at the stage where you will try anything, do this, but keep up your other OTC routines. Magnesium or mag oil is vital too. I usually take a swig of pickle juice at lunch too.

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A spoonful of yellow mustard works great, too

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