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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

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

sunnyflower | @sunnyflower | Sep 7, 2020
In reply to @helennicola "Hi Hank, magnesium never helped my sleep but lucky for me the gabapentin does. My husband..." + (show)
@helennicola

Hi Hank, magnesium never helped my sleep but lucky for me the gabapentin does. My husband takes (1) 25mg. CBD gummie (non THC) every night when retiring and he sleeps through the night, he used to get up 3-4 times to use the bathroom. Just FYI

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Hello helennicola! I have to take two magnesium glycinate (total 400mg.), twice daily or I willl get the most painful tetany of muscles on the top of my ankle, feet, toes and even the giant aductor (inner thigh) muscles and hamstrings that can last 15 minutes or more. They are agony and I'm positive that were I to have these in public, and people saw me trying to stretch them out and crying out in pain, they would all call 911!! That's just my input on Magnesium. Best wishes, Sunnyflower 😊

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2 replies
sunnyflower | @sunnyflower | Sep 7, 2020
In reply to @testudo "Hello John, I want to thanks for your comments along with others who have commented on..." + (show)
@testudo

Hello John, I want to thanks for your comments along with others who have commented on my first post the other day. The comments and posts are sobering. For the first time, I am finally dedicated to get my sugar glucose levels down. My levels I believe are similar to yours (John) at one time as my glucose level was at 115. A1C at 6.0 (Prediabetes). But I think I have done harm with these levels. My latest with my Dr. Google PN diagnosis, I notice a slight burning sensation (not pain) in feet at night lying down. I dont notice it when I'm up and about. And periodically I notice sensation (not pain) in my hands. My GP is going to run some imaging on my neck and spine. Looking for pinched nerves? He was also going to prescribe Lexapro for my COVID-19 anxiety. He changed it to Duloxetine because of these symptoms. I think I need to get to a neurologist and get a EMG. I hear "no cure" and I'm borderline terrified with progression of this but I'm hoping I can stop or at least slow it down with eliminating sugars and high carbs and with exercise (I have been way to sedentary). Thanks you all so much for your comments and I welcome any and all strategies with this. Thanks again, John

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Hey John, we're all rooting for you! I had to do the same and have lost 200#s. After a while you get used to your lifestyle change if that is what your goal is. Then you'll be able to ease up every once in a while. I wish all the best for you and success! Deeply caring, Sunnyflower

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1 reply
testudo | @testudo | Sep 7, 2020
In reply to @sunnyflower "Hey John, we're all rooting for you! I had to do the same and have lost..." + (show)
@sunnyflower

Hey John, we're all rooting for you! I had to do the same and have lost 200#s. After a while you get used to your lifestyle change if that is what your goal is. Then you'll be able to ease up every once in a while. I wish all the best for you and success! Deeply caring, Sunnyflower

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Thank you Sunnyflower, I’m at a point where I’m trying to treasure each day for what it is and not think of what might happen later. The diabetes (prediabetes) diets are complicated but I’m weeding through them. I get the exercise part. John

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 7, 2020
In reply to @testudo "Hello John, I want to thanks for your comments along with others who have commented on..." + (show)
@testudo

Hello John, I want to thanks for your comments along with others who have commented on my first post the other day. The comments and posts are sobering. For the first time, I am finally dedicated to get my sugar glucose levels down. My levels I believe are similar to yours (John) at one time as my glucose level was at 115. A1C at 6.0 (Prediabetes). But I think I have done harm with these levels. My latest with my Dr. Google PN diagnosis, I notice a slight burning sensation (not pain) in feet at night lying down. I dont notice it when I'm up and about. And periodically I notice sensation (not pain) in my hands. My GP is going to run some imaging on my neck and spine. Looking for pinched nerves? He was also going to prescribe Lexapro for my COVID-19 anxiety. He changed it to Duloxetine because of these symptoms. I think I need to get to a neurologist and get a EMG. I hear "no cure" and I'm borderline terrified with progression of this but I'm hoping I can stop or at least slow it down with eliminating sugars and high carbs and with exercise (I have been way to sedentary). Thanks you all so much for your comments and I welcome any and all strategies with this. Thanks again, John

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Hi @testudo, you may also be interested in following the Diabetes/Endocrine System group and joining some of these discussions: https://connect.mayoclinic.org/group/diabetes-and-endocrine-problems/

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helennicola | @helennicola | Sep 7, 2020
In reply to @sunnyflower "Hello helennicola! I have to take two magnesium glycinate (total 400mg.), twice daily or I willl..." + (show)
@sunnyflower

Hello helennicola! I have to take two magnesium glycinate (total 400mg.), twice daily or I willl get the most painful tetany of muscles on the top of my ankle, feet, toes and even the giant aductor (inner thigh) muscles and hamstrings that can last 15 minutes or more. They are agony and I'm positive that were I to have these in public, and people saw me trying to stretch them out and crying out in pain, they would all call 911!! That's just my input on Magnesium. Best wishes, Sunnyflower 😊

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Hi Sunnyflower, glad you get relief for your horrific cramps with magnesium, I also take magnesium for chronic foot/leg cramps, I also use Theraworx and ProCure epsom salt gel at times plus nightly calf stretches and massages. Magnesium never helped me with sleep although many people find it beneficial.

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sunnyflower | @sunnyflower | Sep 7, 2020
In reply to @testudo "Thank you Sunnyflower, I’m at a point where I’m trying to treasure each day for what..." + (show)
@testudo

Thank you Sunnyflower, I’m at a point where I’m trying to treasure each day for what it is and not think of what might happen later. The diabetes (prediabetes) diets are complicated but I’m weeding through them. I get the exercise part. John

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That's all you can do! One day (minute, second, day) at a time. Just sent one up on your behalf. Fondly, Sunnyflower

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avmcbellar | @avmcbellar | Sep 7, 2020
In reply to @testudo "Hello John, I want to thanks for your comments along with others who have commented on..." + (show)
@testudo

Hello John, I want to thanks for your comments along with others who have commented on my first post the other day. The comments and posts are sobering. For the first time, I am finally dedicated to get my sugar glucose levels down. My levels I believe are similar to yours (John) at one time as my glucose level was at 115. A1C at 6.0 (Prediabetes). But I think I have done harm with these levels. My latest with my Dr. Google PN diagnosis, I notice a slight burning sensation (not pain) in feet at night lying down. I dont notice it when I'm up and about. And periodically I notice sensation (not pain) in my hands. My GP is going to run some imaging on my neck and spine. Looking for pinched nerves? He was also going to prescribe Lexapro for my COVID-19 anxiety. He changed it to Duloxetine because of these symptoms. I think I need to get to a neurologist and get a EMG. I hear "no cure" and I'm borderline terrified with progression of this but I'm hoping I can stop or at least slow it down with eliminating sugars and high carbs and with exercise (I have been way to sedentary). Thanks you all so much for your comments and I welcome any and all strategies with this. Thanks again, John

Jump to this post

Hi John @testudo. Prediabetes is not a diagnosis. The lab results are telling you that your pancreas is not producing enough insulin to transfer the energy from the glucose in your blood to the cells In your body. Some of the glucose remains in your blood. Too much glucose in the blood can eventually make the blood sticky and not circulate well especially to the tiny bloods vessels thus causing deprivation of nutrients for cells to survive. There are ways to manage glucose levels in your blood. First of all, you can burn off excess glucose in your blood by exercising. You will have to incorporate this in your daily routine to stabilize your sugars. Secondly, you can manage your blood sugars with a low carbohydrate diet. It just takes knowledge in learning portion control and amount of carbohydrates in foods you eat. You can also alternate with foods that have a lower carb count. My elderly mother had prediabetes. She ignored her labs and as a result was later diagnosed with diabetes. Her doctor put her on an oral medication for her diabetes. Since then I have taught her much about the disease and how to control her blood sugar through diet and exercise. She did not want the disease to cause her to have daily finger sticks or insulin injections. Within a year her doctor discontinued her oral medication for diabetes. She watches the quantity of foods she eats and takes more walks now and has maintained a hemoglobin AIC level not requiring medications. She NEVER got diabetic neuropathy as a result of keeping her blood sugar within normal limits. I don’t know if you are overweight but losing weight can lower blood glucose levels and blood pressure. I had a coworker who was determined not to get the diabetes diagnosis although her entire family had diabetes. That is her parents and siblings. She watched what she ate and even became an aerobics instructor which forced her to exercise. She loved to exercise though. I was last in contact with her when she was 70 and she was still going strong teaching exercise classes. She was never diagnosed with diabetes. It is not an easy task. It all comes down to what is important to you. Feel free to ask any questions. Best of luck.

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1 reply
pfbacon | @pfbacon | Sep 7, 2020
In reply to @jimhd "@pfbacon I make it a habit to read the paperwork that comes with my meds, even..." + (show)
@jimhd

@pfbacon

I make it a habit to read the paperwork that comes with my meds, even though I've read it many times before. A high percentage of them indicate that they are CNS suppressants in some people. The warning for each one is that the effects of these medications are increased, taken with other meds. And, there are always in my own interactions list warnings that one medication may reduce the effectiveness of another one.

A compelling reason for the warnings and interactions and possible side effects is to reduce the manufacturer's exposure to litigation, and the word, "possible", always accompanies the information. It's been interesting to me to observe the similarities between the warnings on almost every medication.

Drowsiness, dizziness, lightheadedness, increased depression, suicidal thoughts, confusion, dry mouth, constipation, diarrhea, loss of appetite, increased appetite, fever, mood changes, urinary, rash, hives are symptoms to watch for on nearly every medication. Of course, not everything on every medication, but they're pretty much universal.

At first, I was pretty worried about all of the possible problems with any and every medication, and I have experienced a small number of them, mostly temporarily. My antidepressants are also seizure meds.

As far as breathing goes, it could be an issue for me when I'm sleeping, so I asked my sleep doctor about it, and he agreed with me that using a cpap or Bipap machine could lower that risk. The cpap in particular essentially forces me to restart breathing, though there's no guarantee, of course.

Over the years I've learned to be aware of the risks, but I've also learned that I can't be and don't need to be fearful or paranoid. One thing that is important is that whenever a specialist prescribes something new, my pcp is notified, and once the dosage is established, the specialist passes off the prescribing to my pcp. It's important that one doctor supervises all of my meds, so he keeps close tabs on possible problems and when it's appropriate has labs done to monitor liver, kidney, etc.

Bottom line - every person is unique.

Jim

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Yes, Jim ... all my medicines come with pages of disclaimers that could scare a person half to death ! Peggy

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Leonard | @jakedduck1 | Sep 7, 2020

Does anyone take the anticonvulsant Lamotrigine (Lamictal) to relieve their neuropathy and if so have you noticed it helping at all?
Thank you,
Jake

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1 reply
Hank | @jesfactsmon | Sep 8, 2020
In reply to @sunnyflower "Hello helennicola! I have to take two magnesium glycinate (total 400mg.), twice daily or I willl..." + (show)
@sunnyflower

Hello helennicola! I have to take two magnesium glycinate (total 400mg.), twice daily or I willl get the most painful tetany of muscles on the top of my ankle, feet, toes and even the giant aductor (inner thigh) muscles and hamstrings that can last 15 minutes or more. They are agony and I'm positive that were I to have these in public, and people saw me trying to stretch them out and crying out in pain, they would all call 911!! That's just my input on Magnesium. Best wishes, Sunnyflower 😊

Jump to this post

@sunnyflower
Sunny, I am glad it helps this problem for you.

Yesterday Marilyn @steeldove sent me an article that opened my eyes to the benefits of magnesium, which I was already aware of to an extent, but not to the extent I am now. Magnesium is like a miracle mineral. I have been having trouble getting to sleep for the first hour every night for at least a couple of weeks. Last night for the first time, I took 160 mg of Magnesium citrate and I had a much better time getting to sleep. I have ordered some magnesium glycinate as the other article she sent me extolled it's ability to make one drowsy more easily and it's better absorption. I take everything I learn about with a grain of salt, but when something works like it did last night, that gets my attention! So I am not surprised at how it helps your problem in your legs. All my best, Hank

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