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?

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

@tashalou69

I really apologise in advance I’m new here and unsure which group to post in so bear with me. I have been suffering for 10 years now and unsure where or who I can go to for help. I severely overheat on a daily basis whether it be 20 degrees or -5 degrees. I overheat when I’m at rest and no physical exertion. It’s really making me depressed. I do not sweat and just get a clammy feeling and almost like my body is tingling and I feel I want to pass out and have done on 2 occasions. I wasn’t like this before and was always a cold person. And yes when my hotness isn’t playing up or I have 1 good day I’m absolutely freezing as I used to always be that way. It really frustrates me as if I’m having a good day I can go out and sit in the sun it just depends on the day which shows it’s not a heat intolerance. I wondered if maybe I have sweat gland issues or damage or maybe something else stopping me able to cool down. Surely I don’t have to cope with this the rest of my life. I can’t go out I cannot exercise I can’t laugh like I used to I’m miserable all the time due to not coping and all I get off docs is I’m not in the change so they are unsure. I really can’t do this anymore and this is my last hope. Sorry for the long post. I was wondering if maybe my body is lacking in something. Nothing I do cools me down and it’s my internal body heat as opposed to my body temp as I’ve never no fever. I rally don’t understand it’s affecting my life and also my life with my kids I don’t want to do anything and have severe anxiety when I know summer is coming as all I want to do is go out and enjoy it and I can’t I sit inside crying into my pillow. X

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Hello @tashalou69, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. There are 2 older discussions that you might want to read through the posts that talk about overheating but not sweating (anhidrosis).

Idiopathic Anhydrosis - https://connect.mayoclinic.org/discussion/idiopathic-anhydrosis/
anhidrosis - https://connect.mayoclinic.org/discussion/anhidrosis/

The Mayo Clinic website has information on the condition here - Anhidrosis — https://www.mayoclinic.org/diseases-conditions/anhidrosis/symptoms-causes/syc-20369400. Have you discussed your symptoms with your doctor or care team?

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Hi—glad I found you. I have peripheral neuropathy but am undergoing tests to find out the cause. I hope someone can tell me if they have similar underlying issues: hypothyroidism (normal), prediabetes (5.8, glucose 80), and feeling pins and needles in soles of my feet, front of legs, and hands. This happened after second Covid Pfizer shot. Don’t know if there’s a connection. My physiatrist prescribed Gabapentin 900 mg a day. My neurologist wants me to do a fasting glucose test and a 24-hour urine collection. But he won’t say why. I am so worried. Please help me find out what this could be. Thank you in advance for any information. Frankie7

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Hello @frankie7, Welcome to Connect. There have been a lot of members posting about neuropathy symptoms after getting the COVID-19 vaccine. I have small fiber peripheral neuropathy and have completed both Pfizer COVID shots with minimal side effects that a majority of people who took the vaccine also had - sore arm and extreme fatigue following my second shot. It did not cause my neuropathy symptoms to flare or worsen. You may want to follow this discussion to learn what other members have shared - COVID vaccines and neuropathy: https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/. Also, you may want to read the following discussion started by @sueinmn - https://connect.mayoclinic.org/discussion/some-positive-covid-19-vaccine-thoughts-and-statistics/

I think your neurologist may just be confirming his thoughts on the possibility of diabetes but that would be a great question to pick up the phone and ask your neurologist. Here's more information on the tests:

Urine Glucose Test: https://www.healthline.com/health/glucose-test-urine
A1C Versus Glucose Testing: A Comparison: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3024379/

Did the Gabapentin help with the pins and needles symptoms?

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@johnbishop

Hello @frankie7, Welcome to Connect. There have been a lot of members posting about neuropathy symptoms after getting the COVID-19 vaccine. I have small fiber peripheral neuropathy and have completed both Pfizer COVID shots with minimal side effects that a majority of people who took the vaccine also had - sore arm and extreme fatigue following my second shot. It did not cause my neuropathy symptoms to flare or worsen. You may want to follow this discussion to learn what other members have shared - COVID vaccines and neuropathy: https://connect.mayoclinic.org/discussion/covid-vaccines-and-neuropathy/. Also, you may want to read the following discussion started by @sueinmn - https://connect.mayoclinic.org/discussion/some-positive-covid-19-vaccine-thoughts-and-statistics/

I think your neurologist may just be confirming his thoughts on the possibility of diabetes but that would be a great question to pick up the phone and ask your neurologist. Here's more information on the tests:

Urine Glucose Test: https://www.healthline.com/health/glucose-test-urine
A1C Versus Glucose Testing: A Comparison: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3024379/

Did the Gabapentin help with the pins and needles symptoms?

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Thank you, John, for your kind message and for guiding me to helpful groups for more information. I do feel around 85% better on the gabapentin. The neurologist is not approachable and was heartless. I was referred to him by another doctor (neurosurgeon) I saw. After I get the tests I will find another neurologist who lets me ask questions. I am glad the vaccine did not worsen your neuropathy Thanks also for your insight on why he ordered the tests re diabetes.Appreciate it. Many thanks! Frankie7

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What is your opinion on stem cell usage?

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@arlenereiss55

What is your opinion on stem cell usage?

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Hello @arlenereiss55, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. There is another discussion on stem cell therapy for neuropathy that you might want to read here: Stem Cell Therapy for Neuropathy - https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

My personal opinion is that there is no evidence that it works for neuropathy but it is something a lot of us would like to see more research and treatments done by major hospitals.

Do you have neuropathy? Are you able to share a little more about your diagnosis and symptoms?

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@frankie7

Hi—glad I found you. I have peripheral neuropathy but am undergoing tests to find out the cause. I hope someone can tell me if they have similar underlying issues: hypothyroidism (normal), prediabetes (5.8, glucose 80), and feeling pins and needles in soles of my feet, front of legs, and hands. This happened after second Covid Pfizer shot. Don’t know if there’s a connection. My physiatrist prescribed Gabapentin 900 mg a day. My neurologist wants me to do a fasting glucose test and a 24-hour urine collection. But he won’t say why. I am so worried. Please help me find out what this could be. Thank you in advance for any information. Frankie7

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I take gabapentin 800mg 3x a day. For 4 years now. It did take the burning and the pins and needles away. Now I'm not feeling parts of my sole's.

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I first heard of TRU Niagen on this site. At least 2 people posted here. Said they had just started it. This was back in December Have not heard how it worked for them. I have spoken with a couple of doctors who are not at all familiar with it. All I seem to find on internet is ads trying to sell it. does anybody have any input? Thanks, Holly

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@margiesanti

I take gabapentin 800mg 3x a day. For 4 years now. It did take the burning and the pins and needles away. Now I'm not feeling parts of my sole's.

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Margie,
I’m sorry about you not feeling part of your sole. I hope you get some help for that very soon. What did your doctor say? Did you have a diagnosis? Sorry if my questions are too personal.
Frankie7

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@hihollyg

I first heard of TRU Niagen on this site. At least 2 people posted here. Said they had just started it. This was back in December Have not heard how it worked for them. I have spoken with a couple of doctors who are not at all familiar with it. All I seem to find on internet is ads trying to sell it. does anybody have any input? Thanks, Holly

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Hello @hihollyg, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. @jesfactsmon and @margaret10 discussed NAD+ in another discussion here - https://connect.mayoclinic.org/comment/326895/. You can find other mentions of the TRU Niagen product and NAD+ by searching Connect at the top of page. Here is a search link showing the results for NAD+:
https://connect.mayoclinic.org/search/?search=NAD%2B

The companies website here has some science reference but I would take it with a grain of salt. To me it doesn't mention too much about helping symptoms of neuropathy but seems like an overall nutrition supplement. Here's their "our science" page for what it's worth - https://www.truniagen.com/science/.

The Foundation for Peripheral Neuropathy has some information on nutrition and supplements that help neuropathy here: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

Are you able to share a little more about your type of neuropathy, symptoms and treatments you have tried?

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