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?

@fiesty76

@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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So sorry to hear

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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I wonder what doctors would do if they felt the pain we feel

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@bustrbrwn22. So true! Sometimes it's really hard to describe pain. It's so abstract!

Liked by fiesty76

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@mayofeb2020

@bustrbrwn22. So true! Sometimes it's really hard to describe pain. It's so abstract!

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I agree

Liked by fiesty76

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@colleenyoung I hope there aren’t 2 of us with the same handle. I am new and go by Bustrbrwn22. I have had worsening sciatica for the past 10 years and am now practically bedridden from pain. I am on my feet to go to the bathroom and very little else. I am prescribed a very minimal amount of hydrocodone probably because I have debilitated anxiety and massive depression which has only responded to benzos. Believe me I have tried every antidepressant, anti anxiety, and non-narcotic drug there is. It is a struggle to make through every day. Pain is at a 10 now at all times from right butt, right hamstring, outsides of both calves, and bottoms of both feet. I purchased the TENS unit Kedsum that someone recommended and I could at least wash some dishes today but the minute it turns off the pain is excruciating. Any advice or kindness is so appreciated.

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@bustrbrwn22

@colleenyoung I hope there aren’t 2 of us with the same handle. I am new and go by Bustrbrwn22. I have had worsening sciatica for the past 10 years and am now practically bedridden from pain. I am on my feet to go to the bathroom and very little else. I am prescribed a very minimal amount of hydrocodone probably because I have debilitated anxiety and massive depression which has only responded to benzos. Believe me I have tried every antidepressant, anti anxiety, and non-narcotic drug there is. It is a struggle to make through every day. Pain is at a 10 now at all times from right butt, right hamstring, outsides of both calves, and bottoms of both feet. I purchased the TENS unit Kedsum that someone recommended and I could at least wash some dishes today but the minute it turns off the pain is excruciating. Any advice or kindness is so appreciated.

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@bustrbrwn22, Sorry you are still struggling with the chronic pain and haven't found much help. Have you heard about or thought about the Mayo Clinic Pain Rehabilitation Center? https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713

Patient story – Pain Rehabilitation Center Offers Freedom From Debilitating Symptoms: https://sharing.mayoclinic.org/2020/03/11/pain-rehabilitation-center-offers-freedom-from-debilitating-symptoms/

Liked by rwinney, fiesty76, Hank

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@bustrbrwn22

@colleenyoung I hope there aren’t 2 of us with the same handle. I am new and go by Bustrbrwn22. I have had worsening sciatica for the past 10 years and am now practically bedridden from pain. I am on my feet to go to the bathroom and very little else. I am prescribed a very minimal amount of hydrocodone probably because I have debilitated anxiety and massive depression which has only responded to benzos. Believe me I have tried every antidepressant, anti anxiety, and non-narcotic drug there is. It is a struggle to make through every day. Pain is at a 10 now at all times from right butt, right hamstring, outsides of both calves, and bottoms of both feet. I purchased the TENS unit Kedsum that someone recommended and I could at least wash some dishes today but the minute it turns off the pain is excruciating. Any advice or kindness is so appreciated.

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@bustrbrwn22 I think you are safe with your Connect name. I don't see any others come up after I type to the first "r" in yours.

You say "Any advice or kindness is so appreciated". I am not sure if I can give you any helpful advice but I will gladly extend to you as much kindness as I am capable of. I am SO VERY SORRY to hear of your terrible, awful and severe pain situation. My heart goes right out to you.

Please accept my deepest hope for some reprieve from your pain condition. NO ONE should be living with a pain level of 10. No one.

My very very best to you my friend. Hank

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@bustrbrwn22

@colleenyoung I hope there aren’t 2 of us with the same handle. I am new and go by Bustrbrwn22. I have had worsening sciatica for the past 10 years and am now practically bedridden from pain. I am on my feet to go to the bathroom and very little else. I am prescribed a very minimal amount of hydrocodone probably because I have debilitated anxiety and massive depression which has only responded to benzos. Believe me I have tried every antidepressant, anti anxiety, and non-narcotic drug there is. It is a struggle to make through every day. Pain is at a 10 now at all times from right butt, right hamstring, outsides of both calves, and bottoms of both feet. I purchased the TENS unit Kedsum that someone recommended and I could at least wash some dishes today but the minute it turns off the pain is excruciating. Any advice or kindness is so appreciated.

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@bustrbrwn22 I don't know where you live, but if it's at all possible, I suggest you get an appointment with Dr. Mathew Pingree in the Pain Medicine department at Mayo Clinic in Minnesota. His entire focus is on relieving your pain. Praying for you.

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Thank you so much for the suggestion!

Liked by steeldove

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I can’t find my emails right. Do you have a phone # or email address that I might be able to reach him by? I am in Wisconsin so MN is closest for me.

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@bustrbrwn22 The Appts number listed on his card is 507-266-9240. You can tell them that I suggested you see him. Marilyn Gilmore

Liked by fiesty76

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@jesfactsmon

@bustrbrwn22 I think you are safe with your Connect name. I don't see any others come up after I type to the first "r" in yours.

You say "Any advice or kindness is so appreciated". I am not sure if I can give you any helpful advice but I will gladly extend to you as much kindness as I am capable of. I am SO VERY SORRY to hear of your terrible, awful and severe pain situation. My heart goes right out to you.

Please accept my deepest hope for some reprieve from your pain condition. NO ONE should be living with a pain level of 10. No one.

My very very best to you my friend. Hank

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I am actually weeping now as in these 10 years no one has ever acknowledged my pain let alone that it shouldn’t have to be. God bless you. I’m going to have a little cry. The people who have abused opioids have ruined it for those who really need it just to get up to get a drink or water or use the restroom.

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@steeldove

@bustrbrwn22 The Appts number listed on his card is 507-266-9240. You can tell them that I suggested you see him. Marilyn Gilmore

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Thanks so much

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@bustrbrwn22

I am actually weeping now as in these 10 years no one has ever acknowledged my pain let alone that it shouldn’t have to be. God bless you. I’m going to have a little cry. The people who have abused opioids have ruined it for those who really need it just to get up to get a drink or water or use the restroom.

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@bustrbrwn22. I'm so sorry you have been in pain for so long. I hope you get the help you need. Do you have friends you can call and talk? I have a good friend that i call and vent sometimes, it helps a little. We're here for you if you want to just talk about your day. Hope we can make you feel less alone. Take care.

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@bustrbrwn22

I am actually weeping now as in these 10 years no one has ever acknowledged my pain let alone that it shouldn’t have to be. God bless you. I’m going to have a little cry. The people who have abused opioids have ruined it for those who really need it just to get up to get a drink or water or use the restroom.

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Hello bustrbrwn22, I am behind on Connect and my memory is, well, let's just say is compromised so I can't recall whether or not I have responded to any of or read your posts. Please forgive.

But I wanted you to know that my heart goes out to you for your pain and all that you've been through.

I know exactly what you mean about the opiophobia out there now bc so many have abused opiates. And the stigma and judgment directed toward patients who have a legitimate need for them. They don't understand that opiates don't take pain away, only help one tolerate it and the average legit patients don't get high from them. There is some subtherapeutic treatment going on bc of opiophobia and it's wrong.

I hope you find the support, compassion and great info here that I have. I have been so blessed by the beautiful people here on Connect!

Many, many blessings, Sunnyflower 😊

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