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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.

Hank | @jesfactsmon | Sep 8, 2020
In reply to @avmcbellar "Hi John @testudo. Prediabetes is not a diagnosis. The lab results are telling you that your..." + (show)
@avmcbellar

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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I agree that there is a lot to be said for diet and exercise. Early (50's thru 70's) deaths from heart disease has run rampant on my father's side of the family. My Uncle is the exception. Through a moderate lifestyle, moderate and healthy diet and daily swimming at a pool, he has made it so far to 95.

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mayofeb2020 | @mayofeb2020 | Sep 8, 2020
In reply to @jesfactsmon "@sunnyflower Sunny, I am glad it helps this problem for you. Yesterday Marilyn @steeldove sent me..." + (show)
@jesfactsmon

@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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@jesfactsmon.. I also tske magnesium glycinate, it's a better magnesium. I never have trouble going to sleep , it's staying asleep through the night that's the problem. I've tried everything under the sun, or moon, in this case. Turn off TV and all digital devices, read a book before bed, stretch, no caffein at all, going to bed the same time etc. etc. If anyone has any secrets to an undisturbed sleep, please share! BTW, magnesium is also good for blood pressure, many people are magnesium deficient. Unfortunately the way foods are grown and processed nowadays, this mineral is often deminished by the time they reached the market. Pumpkins seeds is a good source too.

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1 reply
steeldove | @steeldove | Sep 8, 2020
In reply to @jesfactsmon "@sunnyflower Sunny, I am glad it helps this problem for you. Yesterday Marilyn @steeldove sent me..." + (show)
@jesfactsmon

@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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@jesfactsmon Hank, I'm so pleased that you tried magnesium and found it so helpful. It's a easily overlooked but vital mineral.

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bustrbrwn22 | @bustrbrwn22 | Sep 8, 2020

What is the highest mg you’ve taken without side effects? Thanks for the tip!

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bustrbrwn22 | @bustrbrwn22 | Sep 8, 2020
In reply to @jakedduck1 "Does anyone take the anticonvulsant Lamotrigine (Lamictal) to relieve their neuropathy and if so have you..." + (show)
@jakedduck1

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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Please be careful with lamictal. I had 4 Seizures in 2 years. The last one caused me the ability to read for about 4 days. I had to train myself words again. I know I am in the real minority here. I also exhibited the rash they warn you about and to seek medical care immediately. I should have stopped then. I was blindly listening to my psychiatrist

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1 reply
jennredd | @jennredd | Sep 8, 2020
In reply to @colleenyoung "I add my welcome to the new and familiar members, and am excited about having this..." + (show)
@colleenyoung

I add my welcome to the new and familiar members, and am excited about having this group dedicated to neuropathy. For those of you who are new to Connect, you may be interested in reading through this discussion where many have shared great tips and thoughts. Join in.

Anyone here dealing with peripheral neuropathy? https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/

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Yes

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jennredd | @jennredd | Sep 8, 2020

I'm new at this I've tried all the different medicines side effects on all of them diarrhea spacing out however yucky feeling with those the pain is atrocious I don't do much anymore I do some exercise. 3 days a week any suggestions for the pain

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Sep 8, 2020
In reply to @jennredd "I'm new at this I've tried all the different medicines side effects on all of them..." + (show)
@jennredd

I'm new at this I've tried all the different medicines side effects on all of them diarrhea spacing out however yucky feeling with those the pain is atrocious I don't do much anymore I do some exercise. 3 days a week any suggestions for the pain

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Hello @jennredd, Welcome to Mayo Clinic Connect. There are several discussions that you may find helpful for suggestions on relief from the pain and discomfort of neuropathy.

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
-- Supplement recommendations: What can help neuropathy: https://connect.mayoclinic.org/discussion/supplement-recommendations-can-help/
-- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

@jennredd are able to share a little more about your diagnosis and what medications your were prescribed or are still taking?

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Leonard | @jakedduck1 | Sep 8, 2020
In reply to @bustrbrwn22 "Please be careful with lamictal. I had 4 Seizures in 2 years. The last one caused..." + (show)
@bustrbrwn22

Please be careful with lamictal. I had 4 Seizures in 2 years. The last one caused me the ability to read for about 4 days. I had to train myself words again. I know I am in the real minority here. I also exhibited the rash they warn you about and to seek medical care immediately. I should have stopped then. I was blindly listening to my psychiatrist

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@bustrbrwn22
Hello,
I'm not taking Lamictal and don't intend to since my Neuropathy has changed. I only have numbness now.
I'm familiar with Lamictal in the treatment of Epilepsy but was curious about its effectiveness in Neuropathy and how many here may have tried it. Epilepsy has been my nemesis for almost 54 years with thousands of seizures.
Were you diagnosed with Steven Johnson syndrome? Didn’t your physician tell you to discontinue the Lamictal when you informed s/he of your rash. Do you have neuropathy and if so are you using any medication to help treat it and if so what type and is it beneficial?
Thank you for your reply.
Take care,
Jake

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1 reply
avmcbellar | @avmcbellar | Sep 8, 2020

Hi @jakedduck1. I see in your post you state you have tried many anti seizure medications. I just wanted to add I was prescribed only one while I was in the ICU following my AVM(ArterioVenous Malformation). Upon discharge from the hospital, I was given a prescription to continue the same medication, Keppra. I don’t normally take medications but figured the doctor would know best. After all I had no decision making with this medication whatsoever. I was in a coma. Needless to say, I hated the effects of the medication and cringed every time I had to take a dose. I did not know how much the medication affected my body, was it me or the drug? It had awful side effects. The more I read, the more I wanted out. So on my follow up visit with my neurologist I convinced him to discontinue it. He told me “ I was right” so I was tapered off and within a few weeks done with it. I never had a seizure. It was a precautionary measure. For me, what an awful feeling taking anti seizure medications. One has to look for the benefits vs the risks in taking it. To answer your question, I saw no benefits with Keppra while I was taking it. I have been drug free for almost 4 years now and have come a long way. I started with a wheel chair because I could not ambulate at all. Wish you well in finding answers!

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