Living with Neuropathy - Welcome to the group

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?

@lois6524

would be interesting to know what medication he is referring to: for the PN or for the prediabetes — ask questions now

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Hello lois6524,
I was thinking the same thing but lost the post. I would say that much better to arrest the pre-diabetic condition as we know there is no medicine to stop the neuropathy. Believe me, I am speaking from experience unfortunately.

Have a blessed day, Sunnyflower 😊

Liked by fiesty76

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@testudo

Hi, my name is John. I am 67 years old. This is my first post. I have not been diagnosed with Peripheral Neurology (PN). In the last several weeks I have noticed some "burning" sensation on my feet and ankles, particularly when I lie in bed at night. So I went to Dr. Google and it pointed me to PN. I mentioned it to my doctor the other day since he indicated that I have prediabetes. He said to keep an eye on it and he indicated that there is medication for that. Any initial thoughts and comments for a newbie are greatly appreciated. Thank you Colleen and John for moderating this site.

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Hi John, thought I had lost your post but had wanted to say that it is much better to arrest the pre-diabetic condition because there is no medicine to treat neuropathy once you have it, that I know of. This we do know, that diabetes is one of the main causes of neuropathy.

I could be wrong, but I think it is rare for neuropathy to be reversed. It is much, much better to get sugars under control and prevent full-blown diabetes which affects micro and macro vessels everywhere in the body including vital organs and eyes.

All the best, Sunnyflower

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@testudo

Hi, my name is John. I am 67 years old. This is my first post. I have not been diagnosed with Peripheral Neurology (PN). In the last several weeks I have noticed some "burning" sensation on my feet and ankles, particularly when I lie in bed at night. So I went to Dr. Google and it pointed me to PN. I mentioned it to my doctor the other day since he indicated that I have prediabetes. He said to keep an eye on it and he indicated that there is medication for that. Any initial thoughts and comments for a newbie are greatly appreciated. Thank you Colleen and John for moderating this site.

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@testudo Hi John, my name is Hank and I would join Sunny in welcoming you here. Not sure what is normally done for someone who might be prediabetic. But my fervent hope is that you do not have neuropathy. The reason I say it that way is, as Sunny mentioned, peripheral neuropathy is virtually incurable with the current medical technology extant today. The first thing you may want to do, in working with your doctor, is to understand about your possible diabetes diagnosis.

Next, if it turns out you are continuing to have unwelcome feelings of pain or discomfort such as what you describe in your feet and ankles, you might be interested in seeing a neurologist. There are some options for being tested for neuropathy. There is a nerve conduction study that could be dome, a skin punch biopsy and an EMG (electromyography) test, among possible other things.If you are developing neuropathy, and you are in pain, especially if it's intolerable, there are treatment options for the pain, i.e. drugs, CBD, THC, other things that people try. These you can discuss with the neurologist, but you will find people here on Connect very eager to help and share their knowledge and experiences with others, so don't be shy about asking.

I believe there is a primer on Connect somewhere as to how to navigate around. I have been here since January 2020 and have pretty much learned on my own. A great resource for general info is John Bishop @johnbishop . You can post a message and include that member name (including the @ sign) and he likely will see it and reply. Best to you and good luck with your experience here on Mayo Connect. Hank

Liked by fiesty76

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@testudo

I have a call into his office to see what medication he was thinking about. Is there a "hallmark" medication that is commonly prescribed?

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@testudo He'll probably prescribe Gabapentin which works for some for pain relief, but not for others. I found Gabapentin just made me sleepy.

Liked by Hank

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@testudo

Hi, my name is John. I am 67 years old. This is my first post. I have not been diagnosed with Peripheral Neurology (PN). In the last several weeks I have noticed some "burning" sensation on my feet and ankles, particularly when I lie in bed at night. So I went to Dr. Google and it pointed me to PN. I mentioned it to my doctor the other day since he indicated that I have prediabetes. He said to keep an eye on it and he indicated that there is medication for that. Any initial thoughts and comments for a newbie are greatly appreciated. Thank you Colleen and John for moderating this site.

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Hello John @testudo, I would like to add my welcome along with @sunnyflower and other members. I've always carried that prediabetes label around myself although I'm not really sure it's a legitimate diagnosis. What I've done in the past 3 to 4 years to improve my numbers is focus on reducing sugar (it's a big culprit and no no for neuropathy) and eating healhier. Here's some information from a Mayo Clinic page that describes the problem much better than I can — "Diabetic neuropathy is a type of nerve damage that can occur if you have diabetes. High blood sugar (glucose) can injure nerves throughout your body. Diabetic neuropathy most often damages nerves in your legs and feet.Mar 3, 2020" — Diabetic neuropathy – Symptoms and causes – Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/symptoms-causes/syc-20371580

You may also be interested in the following discussions on Connect:
— Burning Feet syndrome: https://connect.mayoclinic.org/discussion/burning-feet-syndrome/
— Erythromelalgia: https://connect.mayoclinic.org/discussion/erythromelalgia/
— Diabetic Neuropathy progressing?: https://connect.mayoclinic.org/discussion/diabetic-neuropathy-progressing/
— Diabetes & Taking Care of Your Feet – It's Important!: https://connect.mayoclinic.org/discussion/diabetic-neuropathy-its-important-to-take-care-of-your-feet/

The fact that you found Mayo Clinic Connect means that you are trying to learn as much as you can and is a great start to becoming a strong advocate for your health. The best suggestion I have is to keep asking questions and learn as much as you can about your condition. The more you know, the better you can communicate with your doctor and health care team.

Do you ever have the burning during the daytime?

Liked by fiesty76, Hank

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@johnbishop, Thanks for another great post with links I will check out. Cyber hugs to you and each of the great Connect mentors that do so much for us all! Stay safe and well!

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@fiesty76

@johnbishop, Thanks for another great post with links I will check out. Cyber hugs to you and each of the great Connect mentors that do so much for us all! Stay safe and well!

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Thank you for the kind words @fiesty76! Hoping we all stay safe and well.

Liked by rwinney, fiesty76

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@johnbishop

Thank you for the kind words @fiesty76! Hoping we all stay safe and well.

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@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The pain throughout my body is taking a toll. My brain is fried with pain, especially in my toes , feet and legs. I can feel the progression My neurologist tells me it is the way it is and will not get better It is just managing the symptoms which includes the pain. This all came about as idiopathic because I don;t or didn't have diabetes..Now after almost 5 years of neuropathy my A!C is off. This makes the doctor think I am diabetic or pre diabetic. So did the neuropathy cause that. My quality of life has done a dramatic change.My feet and toes hurt so bad that even a percocet (which I am prescribed) doesn;t do much. I take Gabapentin 600 mg at night I don't see it is helping and then think maybe it would be worse if I didn't take it. Is this the way I have to live waiting to die. ? Sorry friends, I haven't been out of bed long and the pain is kicking my butt and I am feeling sorry for myself. I do normal things one day and suffer so much the next day. I read these posts everyday and I do get hope and encouragement. Need a little extra today. I do have an appointment with the podiatrist next week, for all that is worth. At least get my nails clipped just like an old horse. Sorry I am in a bummer. Love you all.. .

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Peace be with you

Liked by fiesty76

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@summertime4

@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The pain throughout my body is taking a toll. My brain is fried with pain, especially in my toes , feet and legs. I can feel the progression My neurologist tells me it is the way it is and will not get better It is just managing the symptoms which includes the pain. This all came about as idiopathic because I don;t or didn't have diabetes..Now after almost 5 years of neuropathy my A!C is off. This makes the doctor think I am diabetic or pre diabetic. So did the neuropathy cause that. My quality of life has done a dramatic change.My feet and toes hurt so bad that even a percocet (which I am prescribed) doesn;t do much. I take Gabapentin 600 mg at night I don't see it is helping and then think maybe it would be worse if I didn't take it. Is this the way I have to live waiting to die. ? Sorry friends, I haven't been out of bed long and the pain is kicking my butt and I am feeling sorry for myself. I do normal things one day and suffer so much the next day. I read these posts everyday and I do get hope and encouragement. Need a little extra today. I do have an appointment with the podiatrist next week, for all that is worth. At least get my nails clipped just like an old horse. Sorry I am in a bummer. Love you all.. .

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@summertime4 Good morning my friend. No apologies needed. I had a friend tell me once…when we're in our own soup, we're in our own soup! Never had I heard this expression before. Maybe she made it up? Anyhow, it describes when we just are at wits end and cant see clearly.

I'm so glad you posted. That's what we're here for. Some days we need to be lifted up from the pain in our bodies and demise in our brains. You speak the truth and need to release it.

The frustration of not being normal or being unable to count on our bodies can be overwhelming. I can of course remind you, as I need reminding myself, that calmness, meditation, journaling, and breathing techniques may help. Some days these things help me and some days they fly right out the window!

Please be kind to yourself today. Know I am sending you love, comfort and many positive vibes for strength. You are not alone. 💞

Rachel

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@summertime4

@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The pain throughout my body is taking a toll. My brain is fried with pain, especially in my toes , feet and legs. I can feel the progression My neurologist tells me it is the way it is and will not get better It is just managing the symptoms which includes the pain. This all came about as idiopathic because I don;t or didn't have diabetes..Now after almost 5 years of neuropathy my A!C is off. This makes the doctor think I am diabetic or pre diabetic. So did the neuropathy cause that. My quality of life has done a dramatic change.My feet and toes hurt so bad that even a percocet (which I am prescribed) doesn;t do much. I take Gabapentin 600 mg at night I don't see it is helping and then think maybe it would be worse if I didn't take it. Is this the way I have to live waiting to die. ? Sorry friends, I haven't been out of bed long and the pain is kicking my butt and I am feeling sorry for myself. I do normal things one day and suffer so much the next day. I read these posts everyday and I do get hope and encouragement. Need a little extra today. I do have an appointment with the podiatrist next week, for all that is worth. At least get my nails clipped just like an old horse. Sorry I am in a bummer. Love you all.. .

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@summertime4, Sorry you are in a bummer. It's times when you are that you just have to take things slow and easy, one step, one day at a time.. Hope your day gets better and better.

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@winney @johnbishop Thank you so much for your responses. It means alot to be acknowledged and having our feelings validated.

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@summertime4

@winney @johnbishop Thank you so much for your responses. It means alot to be acknowledged and having our feelings validated.

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You're welcome. Feel better

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@summertime4

@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The pain throughout my body is taking a toll. My brain is fried with pain, especially in my toes , feet and legs. I can feel the progression My neurologist tells me it is the way it is and will not get better It is just managing the symptoms which includes the pain. This all came about as idiopathic because I don;t or didn't have diabetes..Now after almost 5 years of neuropathy my A!C is off. This makes the doctor think I am diabetic or pre diabetic. So did the neuropathy cause that. My quality of life has done a dramatic change.My feet and toes hurt so bad that even a percocet (which I am prescribed) doesn;t do much. I take Gabapentin 600 mg at night I don't see it is helping and then think maybe it would be worse if I didn't take it. Is this the way I have to live waiting to die. ? Sorry friends, I haven't been out of bed long and the pain is kicking my butt and I am feeling sorry for myself. I do normal things one day and suffer so much the next day. I read these posts everyday and I do get hope and encouragement. Need a little extra today. I do have an appointment with the podiatrist next week, for all that is worth. At least get my nails clipped just like an old horse. Sorry I am in a bummer. Love you all.. .

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Hi @summertime4 Not very fiesty, eh? Probably not very summer like either I'm assuming. Wouldn't be great if on the days you feel crappy your user name would just automatically change to @crappy? Sorry, my pitiful attempt to cheer you up.

I hear you about the gabapentin. Lots of people love it, and lots don't see any benefit, such as my wife who had nothing but bad side effects. You know, she started popping an extra magnesium pill just before bed about a month ago, and maybe it's a coincidence, but she has been getting to sleep lots better than she did before, or at least it seems like it. Do you take magnesium before bedtime?

I sympathize with you so much to have to hear from your neurologist that "that's just the way it is". He could be right, but maybe he could say it in a somewhat more positive way? I mean, lots of people are trying ne stuff every day so you never know. I just read about something I was not aware of over in the chemo neuropathy discussion. Did you ever try PEA? Its name is Palmitoylethanolamide so better to stick with PEA. My wife and I are going to discuss it later today.

Anyway, my best to you @crappy, I mean @summertime4. Hang in there. ✌ Hank

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@summertime4

@fiesty76 I like that call name. Fiesty is good. I am not feeling very fiesty. The pain throughout my body is taking a toll. My brain is fried with pain, especially in my toes , feet and legs. I can feel the progression My neurologist tells me it is the way it is and will not get better It is just managing the symptoms which includes the pain. This all came about as idiopathic because I don;t or didn't have diabetes..Now after almost 5 years of neuropathy my A!C is off. This makes the doctor think I am diabetic or pre diabetic. So did the neuropathy cause that. My quality of life has done a dramatic change.My feet and toes hurt so bad that even a percocet (which I am prescribed) doesn;t do much. I take Gabapentin 600 mg at night I don't see it is helping and then think maybe it would be worse if I didn't take it. Is this the way I have to live waiting to die. ? Sorry friends, I haven't been out of bed long and the pain is kicking my butt and I am feeling sorry for myself. I do normal things one day and suffer so much the next day. I read these posts everyday and I do get hope and encouragement. Need a little extra today. I do have an appointment with the podiatrist next week, for all that is worth. At least get my nails clipped just like an old horse. Sorry I am in a bummer. Love you all.. .

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@summertime, I'm glad you like my "handle" but do want you to know that like @jesfactsmon suggested, some days probably most of us feel @crappy too. Those days are wretched and having a safe and understanding place to vent can really help. I was starting a reply when a call came that my friend could come sit at my outdoor table to help me with my new android cell phone. Know idea if I completed the post to you and sent it or not. So if I'm repeating myself, just chalk it up to olde and forgetful, ok?

My cardiologist referred me to a neurologist for numb feet a yr ago. When tests didn't find the source of the neuropathy, the doc ordered diabetes testing which showed me pre-diabetic. Neither of these maladies were ever reported by other family members. I don't know which came first.. the cart or horse but Metformin was prescribed for the diabetes and nothing for the neuropathy.

I stopped the Metformin on my own because of continuing nausea, appetite and weight loss. Thirty lost lbs and multiple tests later, I never received a medical reason for the loss but did receive an additional diagnosis of chronic kidney disease (ckd). When it rains it pours, yes?

@rswinney, posting about "when we're in our own soup, we're in our own soup" is a good descriptor. I always say, "if your foot is broken and my hip is broken, we both hurt". And, as Rachel continued, some days our diversions work and help and others they just don't. That's when it is good to have a group like this who can listen, support and just commiserate. As she and @john wrote, it helps to remember you are not alone and others are hoping "your day gets better and better". Bet other heads were nodding in agreement as we read that one day we do more normal things and the next day we pay the price. Take care. We are here for you and each other.

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