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?

@ashley302

I'm 27 years old and I've been dealing with SFN for over a year now. Had the biopsy to confirm and tried various antidepressants. Currently I decided to stop taking medication because I don't want to be on anything. I'm so young and don't understand why this has happened as I'm sure many of you feel. I've always been healthy and don't have diabetes or any known cause. It's so frustrating and every day is a battle to be positive. Some days i'm depressed and others I'm mad. At this point i don't know if I should even see anymore doctors because it's the same drill as in they can't do anything or don't know the cause.

For natural remedies what has worked for relief?
Also have your symptoms of SFN gotten worse?

Acupuncture – don't think it's helped at all.
I've been trying drinking celery juice every day, giving that more time.
Eat lots of fruits and veggies through out the day.

Thank you for your support and tips.

Jump to this post

Hi @ashley302, I would like to add my welcome to Connect along with @jimhd and other members. Like Jim I also have idiopathic small fiber peripheral neuropathy and have had it for over 20+ years. I only have the numbness with my neuropathy and agree with Jim that it seems to affect each of us a little different and what works for one may not work for others. I take a protocol of vitamins and minerals which seems to have slowed or stopped my neuropathy progression but only time will tell. I shared what has helped me in my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

You are here asking questions and that is great. One of the best things you can do to help yourself is to learn as much as you can about your condition. Knowledge is power and will help you when discussing treatment options with doctors. There are some other discussions on Connect that you might find helpful.

> Groups > Neuropathy > Scientific research and scholarly papers on Small Fiber Neuropathy
https://connect.mayoclinic.org/discussion/scientific-research-and-scholarly-papers-on-small-fiber-neuropathy/

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Are you able to share a little more about your symptoms? Do you have numbness along with pain? Is it just in your feet?

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@ashley302

I'm 27 years old and I've been dealing with SFN for over a year now. Had the biopsy to confirm and tried various antidepressants. Currently I decided to stop taking medication because I don't want to be on anything. I'm so young and don't understand why this has happened as I'm sure many of you feel. I've always been healthy and don't have diabetes or any known cause. It's so frustrating and every day is a battle to be positive. Some days i'm depressed and others I'm mad. At this point i don't know if I should even see anymore doctors because it's the same drill as in they can't do anything or don't know the cause.

For natural remedies what has worked for relief?
Also have your symptoms of SFN gotten worse?

Acupuncture – don't think it's helped at all.
I've been trying drinking celery juice every day, giving that more time.
Eat lots of fruits and veggies through out the day.

Thank you for your support and tips.

Jump to this post

Im so sorry for your diagnosis. It truly sucks at any age but, the younger you are, I feel the more unaccepting it can be. I began with SFN symptoms at 46.

Trial and error, a ton of research, along with perseverance will get you through as you adjust to a new normal. Hoping you were detected in early stages that may possibly bring nerve regeneration. My Neuro claims it can take up to a few years, no guarantee.

You have come to a supportive forum which has helped me geatly. Navigate the threads and learn from others experiences, each unique. Take notes then do your own research. Knowledge is power!

Good luck Ashley. We are here to help! Ask any questions, any time. 🤗
Rachel

REPLY
@johnbishop

Hi @ashley302, I would like to add my welcome to Connect along with @jimhd and other members. Like Jim I also have idiopathic small fiber peripheral neuropathy and have had it for over 20+ years. I only have the numbness with my neuropathy and agree with Jim that it seems to affect each of us a little different and what works for one may not work for others. I take a protocol of vitamins and minerals which seems to have slowed or stopped my neuropathy progression but only time will tell. I shared what has helped me in my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

You are here asking questions and that is great. One of the best things you can do to help yourself is to learn as much as you can about your condition. Knowledge is power and will help you when discussing treatment options with doctors. There are some other discussions on Connect that you might find helpful.

> Groups > Neuropathy > Scientific research and scholarly papers on Small Fiber Neuropathy
https://connect.mayoclinic.org/discussion/scientific-research-and-scholarly-papers-on-small-fiber-neuropathy/

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Are you able to share a little more about your symptoms? Do you have numbness along with pain? Is it just in your feet?

Jump to this post

Hi John, Thank you for all your tips. I will take a look at all the information you've provided. I've tried many of things but willing to see if anything else may help.

My symptoms all started in my feet just tingling at first but now I have a lot of the burning pain and it seems like I'm having some discomfort in my lower legs now too. It's been almost 2 years and I don't want symptoms to progress.

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@rwinney

Im so sorry for your diagnosis. It truly sucks at any age but, the younger you are, I feel the more unaccepting it can be. I began with SFN symptoms at 46.

Trial and error, a ton of research, along with perseverance will get you through as you adjust to a new normal. Hoping you were detected in early stages that may possibly bring nerve regeneration. My Neuro claims it can take up to a few years, no guarantee.

You have come to a supportive forum which has helped me geatly. Navigate the threads and learn from others experiences, each unique. Take notes then do your own research. Knowledge is power!

Good luck Ashley. We are here to help! Ask any questions, any time. 🤗
Rachel

Jump to this post

Thank you for sharing. Yeah the hardest part I feel like is accepting it.

As far as early stages how can there be nerve regeneration? I understand if you find the root cause then there's a possibility for recovering and correcting the problem.

Is your type of neuropathy idiopathic or did you get any reverse in your symptoms?

Definitely support will be helpful because it's hard to cope with this condition and not having people that can relate to you.

Thanks for much Rachel.

REPLY
@ashley302

Thank you for sharing. Yeah the hardest part I feel like is accepting it.

As far as early stages how can there be nerve regeneration? I understand if you find the root cause then there's a possibility for recovering and correcting the problem.

Is your type of neuropathy idiopathic or did you get any reverse in your symptoms?

Definitely support will be helpful because it's hard to cope with this condition and not having people that can relate to you.

Thanks for much Rachel.

Jump to this post

Ah yes, I'm sorry, you said you were idiopathic. And you mentioned 2 years…is that how long ago you were diagnosed?

I have had b12 deficiency and unfortunately do not believe it was found early enough for nerve regeneration. I feel Drs sometimes want to keep a window of hope open.

Truth is there is no sure bet with SFN.

Keeping hope alive for slowing progression and comfort each day.

REPLY
@ashley302

Thank you for sharing. Yeah the hardest part I feel like is accepting it.

As far as early stages how can there be nerve regeneration? I understand if you find the root cause then there's a possibility for recovering and correcting the problem.

Is your type of neuropathy idiopathic or did you get any reverse in your symptoms?

Definitely support will be helpful because it's hard to cope with this condition and not having people that can relate to you.

Thanks for much Rachel.

Jump to this post

Hi Ashley – I was only diagnosed 2 weeks ago – and only joined this forum a few days ago 🙂 I am honestly heartbroken to hear that you have been diagnosed with this at such a young age. I am in my early 60's and don't fuss about the underlying cause because my Neurologist said it's quite common in older people.

You said you don't want to take any drugs, and that makes me wonder how you deal with the pain. I finally went to my doctor because the pain had started to wake me up in the middle of the night (every night) and I could not get back to sleep until the pain meds I kept on my bedside table kicked in; and that doesn't even mention the daytime pain – which at times is all-consuming. Perhaps you are not there yet?

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@iceblue

Hi Ashley – I was only diagnosed 2 weeks ago – and only joined this forum a few days ago 🙂 I am honestly heartbroken to hear that you have been diagnosed with this at such a young age. I am in my early 60's and don't fuss about the underlying cause because my Neurologist said it's quite common in older people.

You said you don't want to take any drugs, and that makes me wonder how you deal with the pain. I finally went to my doctor because the pain had started to wake me up in the middle of the night (every night) and I could not get back to sleep until the pain meds I kept on my bedside table kicked in; and that doesn't even mention the daytime pain – which at times is all-consuming. Perhaps you are not there yet?

Jump to this post

I found NUCYNTA 250 mg. 2x a day and Gabapentin 300mg. 3 tabs 4 x a day helps me a lot for my neuropathy. I hope this helps.

Liked by Leonard

REPLY

Good morning everyone. I want to share my recent experience with a pain relief device called Quell. I first saw it in my local pharmacy but because it is expensive wanted to do some research first. After doing some reading and exploring their website (quellrelief.com) I decided to take the plunge. I have been trying to find pain relief without having to take any prescription drugs and since Quell offers a 60 day money back guarantee thought it was worth a try. It does say on the website that you should wear it for at least 30 days since it can take some time for the pain relief to kick in. At day 12 I noticed that my pain had decreased substantially and at times it has virtually disappeared. When I do feel the familiar burning sensation it is at a manageable level and doesn’t last a long time. A couple of caveats: this is only day four of relief and being able to sleep but I am encouraged enough to mention this device should anyone want to look into it. I can continue to post updates on my experience to see if the effects continue (fingers crossed!)
Also, at the same time I started using the device I began taking PEA and using a full spectrum CBD capsule so who knows what the effects of those may have been. I don’t want to sound like a salesperson for a particular product but wanted to mention it as something that people may want to investigate. Has anyone else tried a Quell device?

REPLY
@sunny2

Good morning everyone. I want to share my recent experience with a pain relief device called Quell. I first saw it in my local pharmacy but because it is expensive wanted to do some research first. After doing some reading and exploring their website (quellrelief.com) I decided to take the plunge. I have been trying to find pain relief without having to take any prescription drugs and since Quell offers a 60 day money back guarantee thought it was worth a try. It does say on the website that you should wear it for at least 30 days since it can take some time for the pain relief to kick in. At day 12 I noticed that my pain had decreased substantially and at times it has virtually disappeared. When I do feel the familiar burning sensation it is at a manageable level and doesn’t last a long time. A couple of caveats: this is only day four of relief and being able to sleep but I am encouraged enough to mention this device should anyone want to look into it. I can continue to post updates on my experience to see if the effects continue (fingers crossed!)
Also, at the same time I started using the device I began taking PEA and using a full spectrum CBD capsule so who knows what the effects of those may have been. I don’t want to sound like a salesperson for a particular product but wanted to mention it as something that people may want to investigate. Has anyone else tried a Quell device?

Jump to this post

Hi @sunny2, Thanks for sharing. I hope the Quell device provides pain relief for you. There is another discussion on the device here that you may want to join.

> Groups > Neuropathy > Quell for PN pain relief
https://connect.mayoclinic.org/discussion/quell-for-pn-pain-relief/

Hope you can give us another positive update after your 30 day trial.

Liked by Leonard, sunny2

REPLY
@iceblue

Hi Ashley – I was only diagnosed 2 weeks ago – and only joined this forum a few days ago 🙂 I am honestly heartbroken to hear that you have been diagnosed with this at such a young age. I am in my early 60's and don't fuss about the underlying cause because my Neurologist said it's quite common in older people.

You said you don't want to take any drugs, and that makes me wonder how you deal with the pain. I finally went to my doctor because the pain had started to wake me up in the middle of the night (every night) and I could not get back to sleep until the pain meds I kept on my bedside table kicked in; and that doesn't even mention the daytime pain – which at times is all-consuming. Perhaps you are not there yet?

Jump to this post

Hi, I'm sorry for yours too. I've taken drugs in the past months but it only helped with my mood my really my pain so I didn't see why I should take it. I just cope with it. Some days are worse than others as far as the burning pain. It's definitely uncomfortable and seems that when I don't wear any socks or shoes it feels alleviated. Not sure if that's common with SFN?

REPLY
@rwinney

Ah yes, I'm sorry, you said you were idiopathic. And you mentioned 2 years…is that how long ago you were diagnosed?

I have had b12 deficiency and unfortunately do not believe it was found early enough for nerve regeneration. I feel Drs sometimes want to keep a window of hope open.

Truth is there is no sure bet with SFN.

Keeping hope alive for slowing progression and comfort each day.

Jump to this post

I kinda new I had it before all the testing was done but pushed for the biopsy just recently to get the official diagnosis which was a few months ago. Yeah it's amazing how Doctor's know so little about the disease and no cure for it. I'm staying hopeful though.

Do you take one medication for yours and has your pain stayed the same level this whole time?

REPLY
@ashley302

I kinda new I had it before all the testing was done but pushed for the biopsy just recently to get the official diagnosis which was a few months ago. Yeah it's amazing how Doctor's know so little about the disease and no cure for it. I'm staying hopeful though.

Do you take one medication for yours and has your pain stayed the same level this whole time?

Jump to this post

Hi Ashley, so sorry you are going through this also at such a young age, hopefully it won’t progress. You might try R Ala (-alpha lipoic acid) and epsom salt soaks, they help me and can’t hurt. Helen

Liked by Leonard

REPLY
@ashley302

Thank you for sharing. Yeah the hardest part I feel like is accepting it.

As far as early stages how can there be nerve regeneration? I understand if you find the root cause then there's a possibility for recovering and correcting the problem.

Is your type of neuropathy idiopathic or did you get any reverse in your symptoms?

Definitely support will be helpful because it's hard to cope with this condition and not having people that can relate to you.

Thanks for much Rachel.

Jump to this post

Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

REPLY
@jeffrapp

Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

Jump to this post

@jeffrapp – Thank you for this great post. @ashley302 and other members, I recently was made aware of a website that I think can be helpful for a lot of patients and doctors – https://patientrevolution.org/ which was founded by Dr. Victor Montori. I watched his interview and was really impressed. I wished all doctors had the same philosophy.

REPLY
@jeffrapp

Hi Ashley
I'm also very sorry you have developed peripheral neuropathy, especially at such a young age.
I have almost the exact same symptoms as you do. I've been playing around with various treatments, none of which have worked very well. I'm still experimenting, and will certainly post here if something good comes up.
Have you been seen at a tertiary care center like Mayo or a university? If not, they may have some answers, especially since you're so young.
What has worked for me a little is to wear sheepskin lined shoes like Ugg. It seems to delay the onset of burning, and make it a little less severe.
Also. when I can, I wear flip flops (with sheepskin soles that I insert myself).
Keep trying different things.
Don't be angry at the doctors (I'm one myself). This is a perplexing disease that they freely admit they don't usually have the answers for. Anger does no good, and will likely make you worse. At your age, I bet they'll come up with something eventually.

Jump to this post

Ashley,

As warm as it was outside the other day here in NY, I had no choice for my paining feet but to wear my daughters Ugg boots!

They were the hotness when she so desperately wanted 2 pairs a few years back (age 14).

They are old and beat down but… ya gotta do what ya gotta do. So, I strolled into the hospital wearing Ugg boots for my lidocaine infusion and my nurse said, "Wow, it got that cold out already?!"

REPLY
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