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?

@summertime4

@sherryw I have a question rather than answer, I.m sorry. How do you know what kind of neuropathy you have. I was told peripheral neuropathy, that's it. Will the neurologist know? I am not sure mine would, but I will ask. I do know I hurt. Both legs and feet with alot of cramping right now. Is that normal. At this point I don't know what is from what or is this something new.

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I also have lots of cramping in both feet! Am about to have minor surgery to put in pain blocker electrodes in both legs!

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@johnbishop

@summertime4 @sherryw and others wanting to know how the different neuropathies are diagnosed.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.
https://www.youtube.com/watch?v=3FrQ7Glvgok

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Thanks @johnbishop

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@summertime4

@sherryw I have a question rather than answer, I.m sorry. How do you know what kind of neuropathy you have. I was told peripheral neuropathy, that's it. Will the neurologist know? I am not sure mine would, but I will ask. I do know I hurt. Both legs and feet with alot of cramping right now. Is that normal. At this point I don't know what is from what or is this something new.

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@summertime4 I wish I could answer your question with certainty. This diagnosis is frustrating. @johnbishop posted a video that I watched and it gives you an idea of the types of neuropathy and diagnostic tools. My neurologist, after extensive lab work/MRIs/ nerve/muscle studies, said that I have idiopathic small fiber neuropathy. He is reluctant to do the skin biopsy because the results wouldn’t change my treatment. I would like to move forward with the skin biopsy

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@wilcy

I also have lots of cramping in both feet! Am about to have minor surgery to put in pain blocker electrodes in both legs!

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Best of luck with your surgery! Thank you for communicating with me. It is nice not to be alone on this journey!

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Will advise if it works!

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@cwm1

@sherryw I don’t know what kind of neuropathy I have although I know mine was chemo induced. One foot always bothers me more than the other and one hand is always worse than the other although neither hand is bad.

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Thank you @cwm1 and @summertime4 for sharing! @cwm1 my neurologist says that mine is idiopathic. I have the same symptoms. Left foot is frequently more symptomatic than the right. My hands don’t bother me near as much as my feet. What do you do that makes the discomfort ease back?

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@sherryw for the most part, my feet just feel numb and like they are swollen…tight skin. However, recently I have had a burning sensation sometimes and the other night I had severe cramping in both feet. I didn’t realize until reading here that could be a symptom. I have no suggestions for relief. I just rub mine and so far, it has eventually gone away. I know it’s chemo induced even though I faithfully iced during chemo. Unfortunately, I will be going through chemo again and I’m very concerned that it will worsen.

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@cwm1

@sherryw for the most part, my feet just feel numb and like they are swollen…tight skin. However, recently I have had a burning sensation sometimes and the other night I had severe cramping in both feet. I didn’t realize until reading here that could be a symptom. I have no suggestions for relief. I just rub mine and so far, it has eventually gone away. I know it’s chemo induced even though I faithfully iced during chemo. Unfortunately, I will be going through chemo again and I’m very concerned that it will worsen.

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Research Curcumin supplement

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@sherryw

@summertime4 I wish I could answer your question with certainty. This diagnosis is frustrating. @johnbishop posted a video that I watched and it gives you an idea of the types of neuropathy and diagnostic tools. My neurologist, after extensive lab work/MRIs/ nerve/muscle studies, said that I have idiopathic small fiber neuropathy. He is reluctant to do the skin biopsy because the results wouldn’t change my treatment. I would like to move forward with the skin biopsy

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I would advise getting the skin punch test. It will tell you if your SFN is length dependent on non-length dependent and give you a greater knowledge about the severity of your SFN. I did the test and mine is non-length dependent. Further pushing and more doctors, I ended up at a cardiologist, where I was diagnosed with dysautonomia (a group of conditions affecting the autonomic nervous system). More specifically, a parasympathetic abnormality and am now on a beta blocker. Guess what? 90% of the pain and the pins/needles are gone. While the genesis of my condition was a very traumatic emergency abdominal surgery in which I nearly died in 2012, the resulting disruption to my ability to absorb vitamins and minerals, along with the obliteration of my microbiome, sent my autonomic system out of control, where it stayed. Anyway I hope this helps you be bold in your journey. It's not easy but sometimes there is an answer! I was not willing to take "idiopathic" or numerous other diagnosis as enough information. After literally dozens of doctors and almost 5 years, I found what I needed to do. Good luck!!!

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@dwilkin

I would advise getting the skin punch test. It will tell you if your SFN is length dependent on non-length dependent and give you a greater knowledge about the severity of your SFN. I did the test and mine is non-length dependent. Further pushing and more doctors, I ended up at a cardiologist, where I was diagnosed with dysautonomia (a group of conditions affecting the autonomic nervous system). More specifically, a parasympathetic abnormality and am now on a beta blocker. Guess what? 90% of the pain and the pins/needles are gone. While the genesis of my condition was a very traumatic emergency abdominal surgery in which I nearly died in 2012, the resulting disruption to my ability to absorb vitamins and minerals, along with the obliteration of my microbiome, sent my autonomic system out of control, where it stayed. Anyway I hope this helps you be bold in your journey. It's not easy but sometimes there is an answer! I was not willing to take "idiopathic" or numerous other diagnosis as enough information. After literally dozens of doctors and almost 5 years, I found what I needed to do. Good luck!!!

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This road is so difficult. I have not been in a medical situation like this before and I find myself mentally worn out. With continued grief issues, constant pain and trying to find the source of the intense pain and after 8 plus month being told I have Morton neuroma along with neuropathy, idiopathic as of now, fibromyalgia, venus insufficiency, osteoarthritis, to name a few. So many doctors, so many different diagnosis with some just saying "I don't know" like saying well your getting old deal with aches and pains. Finally and praying this is it for severe foot pain being diagnosed by a podiatrist with Morton neuroma. Why hadn't the five specialists referred me to a podiatrist 8 months ago? I just happened to go to an ER who said why not a podiatrist and gave me a name. As for the neuropathy I was positive for autoimmune and blood work was just done to look into that. The rheumatologist doesn't think so, but is doing what is necessary to rue it out or in. Otherwise another idiopathic which I am not buying. Mentally I am beat. I lost my husband 19 months ago and not long after I started with physical problems. I feel angry at doctors because at the beginning when I told them how I was feeling physically it was dismissed with "Your grieving" All these months of pain and lack of support from doctors and now continued pain with the neuropathy and my foot. I am having a hard time staying positive even if I believe I may have reason to believe that some of the foot pain can be decreased and I will be able to return to activities I once enjoyed. I lost my best friend and the quality of life went too. I am sorry for a negative post today. I know . I was going to say I know it will get better, but darn that is not the way I feel at this moment. Thank you all. I did get a smile out of myself just now thinking Carol you are one negative , mean ole woman today. Actually that is not my usual MO but here it is. Prayers for all.

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I went to a podiatrist for neuropathy in feet! Tried steroid shots in feet! Helped a little! Going to have a new type of pain blockage transmitters installed in both legs! He said it’s getting very popular! Good luck!

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@wilcy

I went to a podiatrist for neuropathy in feet! Tried steroid shots in feet! Helped a little! Going to have a new type of pain blockage transmitters installed in both legs! He said it’s getting very popular! Good luck!

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Best of luck to you.

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@summertime4

This road is so difficult. I have not been in a medical situation like this before and I find myself mentally worn out. With continued grief issues, constant pain and trying to find the source of the intense pain and after 8 plus month being told I have Morton neuroma along with neuropathy, idiopathic as of now, fibromyalgia, venus insufficiency, osteoarthritis, to name a few. So many doctors, so many different diagnosis with some just saying "I don't know" like saying well your getting old deal with aches and pains. Finally and praying this is it for severe foot pain being diagnosed by a podiatrist with Morton neuroma. Why hadn't the five specialists referred me to a podiatrist 8 months ago? I just happened to go to an ER who said why not a podiatrist and gave me a name. As for the neuropathy I was positive for autoimmune and blood work was just done to look into that. The rheumatologist doesn't think so, but is doing what is necessary to rue it out or in. Otherwise another idiopathic which I am not buying. Mentally I am beat. I lost my husband 19 months ago and not long after I started with physical problems. I feel angry at doctors because at the beginning when I told them how I was feeling physically it was dismissed with "Your grieving" All these months of pain and lack of support from doctors and now continued pain with the neuropathy and my foot. I am having a hard time staying positive even if I believe I may have reason to believe that some of the foot pain can be decreased and I will be able to return to activities I once enjoyed. I lost my best friend and the quality of life went too. I am sorry for a negative post today. I know . I was going to say I know it will get better, but darn that is not the way I feel at this moment. Thank you all. I did get a smile out of myself just now thinking Carol you are one negative , mean ole woman today. Actually that is not my usual MO but here it is. Prayers for all.

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Some days negativity wins out and that is ok. My sense however is that you are one strong, brave, independent woman that can and will conquer.

Liked by cocodab

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@summertime4

This road is so difficult. I have not been in a medical situation like this before and I find myself mentally worn out. With continued grief issues, constant pain and trying to find the source of the intense pain and after 8 plus month being told I have Morton neuroma along with neuropathy, idiopathic as of now, fibromyalgia, venus insufficiency, osteoarthritis, to name a few. So many doctors, so many different diagnosis with some just saying "I don't know" like saying well your getting old deal with aches and pains. Finally and praying this is it for severe foot pain being diagnosed by a podiatrist with Morton neuroma. Why hadn't the five specialists referred me to a podiatrist 8 months ago? I just happened to go to an ER who said why not a podiatrist and gave me a name. As for the neuropathy I was positive for autoimmune and blood work was just done to look into that. The rheumatologist doesn't think so, but is doing what is necessary to rue it out or in. Otherwise another idiopathic which I am not buying. Mentally I am beat. I lost my husband 19 months ago and not long after I started with physical problems. I feel angry at doctors because at the beginning when I told them how I was feeling physically it was dismissed with "Your grieving" All these months of pain and lack of support from doctors and now continued pain with the neuropathy and my foot. I am having a hard time staying positive even if I believe I may have reason to believe that some of the foot pain can be decreased and I will be able to return to activities I once enjoyed. I lost my best friend and the quality of life went too. I am sorry for a negative post today. I know . I was going to say I know it will get better, but darn that is not the way I feel at this moment. Thank you all. I did get a smile out of myself just now thinking Carol you are one negative , mean ole woman today. Actually that is not my usual MO but here it is. Prayers for all.

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@summertime4 When I read your post, I felt as if it was one I wrote several years ago. However, my dragons are Diabetes and other problems that go along with it. I was diagnosed three years ago with no symptoms. I had a regular blood profile and a week later received a letter from my PCP saying, "You have diabetes." Then she didn't know what to do. So, I was left to my own devices to read and research and doctor myself. I was raging mad and ranted and raved and couldn't believe it. I found Mayo Connect and started asking questions, and the Volunteer Mentors and other members jumped in to help. I stayed mad for a long time until the Connect angels talked me through what I needed to do to help myself. It isn't easy, especially when doctors don't know and you get passed around. If you are lucky, you may get a doctor who can help. It would be wonderful if we could just take a pill and the pain and grief and anger could be cured. Life isn't that easy. I am sorry you lost your husband; that just adds fuel to the fire. My husband and I are still together, but he has heart issues that keep me on guard all the time. My feet are so painful that I sometimes cannot walk without crying. But, I think there is a bottom line. Each day if you can find something to be grateful for or something that made you smile, those little things eventually will become bigger and help you feel better mentally so that you can deal with the physical. If you stay with Connect, you will be able to read and know that you are not alone in your quest to feel better. Eventually, as angry as I was, no one in Connect gave up on me. Today, over three years later, I am still a Diabetic 2; my feet still hurt; and I also deal with kidney issues, panic attacks, and fibromyalgia. That along with my husband's heart problems; his eye stroke, his skin cancer keep health problems in the forefront of our lives. But, I know there are people who have so much more to deal with, and I am thankful. If you will, continue to share on Connect and let us know how you are doing, or if you have questions and no answers, ask on Connect, and someone will try to share an answer. We are not doctors, but we have had similar experiences and can offer what was done that helped us. Will you stay in touch? We all care.
Carol

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@summertime4

This road is so difficult. I have not been in a medical situation like this before and I find myself mentally worn out. With continued grief issues, constant pain and trying to find the source of the intense pain and after 8 plus month being told I have Morton neuroma along with neuropathy, idiopathic as of now, fibromyalgia, venus insufficiency, osteoarthritis, to name a few. So many doctors, so many different diagnosis with some just saying "I don't know" like saying well your getting old deal with aches and pains. Finally and praying this is it for severe foot pain being diagnosed by a podiatrist with Morton neuroma. Why hadn't the five specialists referred me to a podiatrist 8 months ago? I just happened to go to an ER who said why not a podiatrist and gave me a name. As for the neuropathy I was positive for autoimmune and blood work was just done to look into that. The rheumatologist doesn't think so, but is doing what is necessary to rue it out or in. Otherwise another idiopathic which I am not buying. Mentally I am beat. I lost my husband 19 months ago and not long after I started with physical problems. I feel angry at doctors because at the beginning when I told them how I was feeling physically it was dismissed with "Your grieving" All these months of pain and lack of support from doctors and now continued pain with the neuropathy and my foot. I am having a hard time staying positive even if I believe I may have reason to believe that some of the foot pain can be decreased and I will be able to return to activities I once enjoyed. I lost my best friend and the quality of life went too. I am sorry for a negative post today. I know . I was going to say I know it will get better, but darn that is not the way I feel at this moment. Thank you all. I did get a smile out of myself just now thinking Carol you are one negative , mean ole woman today. Actually that is not my usual MO but here it is. Prayers for all.

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I travel this road with you.
Had surgery for Mortans neuroma didn’t work and the dr simply said I didn’t follow his instructions!
The journey is isolating at times but you are not alone.
Yesterday a neuro dr mentioned lidocaine infusion?! Never heard of it but will do some research. I am trying a compounding cream of lidocaine ketamine and Baclofen.
Bless you take care

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