1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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.

Mentor
John, Volunteer Mentor | @johnbishop | Apr 23 11:24am
In reply to @jgoodall "Hello and thank you for this support group! I have been scanning through the posts to..." + (show)
@jgoodall

Hello and thank you for this support group!

I have been scanning through the posts to get some much needed help and have found some help that I would not have received if not for the information that I found here.
I am 46 years old and began to experience severe pain in my early 30’s.
I have non-length dependent small fiber neuropathy, erythromyelagia on my face, ears nose, feet, hands and knees.
I have Sjogren’s as well.
I need better medical care because I was referred to Stanford Health but my insurance will not cover Stanford and I am considering making a trip to a Mayo clinic.
I drag my heels on going to Mayo since I already know that there are no treatments available except some palliative ones which I already have.
My neurologist noted no reflexes in my ankles so I do not know why that is since small fiber neuropathy does not involve motor nerves. However, my EMG was normal. So I am perplexed about the loss of reflexes.
My huge struggles are: digestion, fatigue, burning skin (erythromyelagia) severe dry eyes, and pain.
I exercise, follow an AIP paleo diet, I do not drink.
I am in bed a lot from the pain in my feet and legs and I am fatigued a lot like my muscles are weighed down by cement blocks.

Despite the struggles, I have a sunny disposition and laugh a lot. I take short walks and when my eyes allow I enjoy literature and watching anything on PBS.

Thanks again for this group!

Jump to this post

Welcome @jgoodall, A sunny disposition goes along way when dealing with neuropathy and a lot of other conditions. It sounds like you have done some homework on learning what changes you can make that provide some relief. Learning as much as you can about your conditions and what may help is key to becoming a better advocate for your health. I'm not sure if you have seen these neuropathy related sites but both contain a lot of helpful information for learning more including some good references and webinars.

--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/neuropathy-overview

You mentioned erythromyelagia and Sjogren’s along with the neuropathy. Have you tried using search on Connect at the top of any page to find other discussions that might provide some information and suggestions?

REPLY
1 reply
sash | @sash | Apr 24 3:29pm

Anyone have reviews of :

FDA Clears Neuralace Medical’s Noninvasive Axon Therapy for Painful Diabetic Neuropathy

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Apr 24 3:57pm
In reply to @sash "Anyone have reviews of : FDA Clears Neuralace Medical’s Noninvasive Axon Therapy for Painful Diabetic Neuropathy" + (show)
@sash

Anyone have reviews of :

FDA Clears Neuralace Medical’s Noninvasive Axon Therapy for Painful Diabetic Neuropathy

Jump to this post

Not really a review but did read the press release...but only 70 patients participated in the study.

--- Neuralace Medical Announces FDA Clearance of Axon Therapy for Chronic Painful Diabetic Neuropathy: https://www.prnewswire.com/news-releases/neuralace-medical-announces-fda-clearance-of-axon-therapy-for-chronic-painful-diabetic-neuropathy-302032205.html

REPLY
Leonard | @jakedduck1 | Apr 24 5:59pm

@sash
They didn't answer the phone
even if you manage to get a hold of them or find a clinic where this is offered, I would be suspicious. Does your doctor know anything about it? I think he would if it worked. If it sounds too good to be true it probably is.
Jake

REPLY
dlydailyhope | @dlydailyhope | Apr 25 7:09am
In reply to @jgoodall "Hello and thank you for this support group! I have been scanning through the posts to..." + (show)
@jgoodall

Hello and thank you for this support group!

I have been scanning through the posts to get some much needed help and have found some help that I would not have received if not for the information that I found here.
I am 46 years old and began to experience severe pain in my early 30’s.
I have non-length dependent small fiber neuropathy, erythromyelagia on my face, ears nose, feet, hands and knees.
I have Sjogren’s as well.
I need better medical care because I was referred to Stanford Health but my insurance will not cover Stanford and I am considering making a trip to a Mayo clinic.
I drag my heels on going to Mayo since I already know that there are no treatments available except some palliative ones which I already have.
My neurologist noted no reflexes in my ankles so I do not know why that is since small fiber neuropathy does not involve motor nerves. However, my EMG was normal. So I am perplexed about the loss of reflexes.
My huge struggles are: digestion, fatigue, burning skin (erythromyelagia) severe dry eyes, and pain.
I exercise, follow an AIP paleo diet, I do not drink.
I am in bed a lot from the pain in my feet and legs and I am fatigued a lot like my muscles are weighed down by cement blocks.

Despite the struggles, I have a sunny disposition and laugh a lot. I take short walks and when my eyes allow I enjoy literature and watching anything on PBS.

Thanks again for this group!

Jump to this post

@jgoodall
I am a 54 year old female and have small fiber neuropathy and a huge list of other symptoms. Have you tried taking Acetyl L Carnitine and Alpha Lipoic Acid supplements for neuropathy pain? They have helped me some. I started taking them when I was first diagnosed with SFN. Also, do you use lidocaine pain patches (Salonpas is my favorite brand) and capsaicin/CBD nerve pain creams? I do get burning and pain on my feet and face that seems to come and go with flares. It seems many neurologists and doctors don’t really know the cause of many nerve diseases and they play whack-a-mole with us trying different things that don’t work. I do question the toxins in air, water, food, medications (OTC and Rx), and household items, etc. being a source of many diseases that cause nerve damage. It seems we need to detoxify as best as possible to prevent further damage while trying to get relief of current symptoms. Many of the things that might help us feel better won’t come from doctors because they are limited of knowledge beyond prescription medication, diagnostic testing, etc. They know little about diet, nutrition, supplements, holistic medicine, etc.

REPLY
1 reply
eirea | @eirea | Apr 25 10:38am

Does anyone know if stem cell therapy has been approved for neuropathy, and if I agree to that treatment at Active integrated medicine in Downingtown, PA, how do I find out if that facility is qualified to use stem therapy for neuropathy?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Apr 25 10:54am
In reply to @eirea "Does anyone know if stem cell therapy has been approved for neuropathy, and if I agree..." + (show)
@eirea

Does anyone know if stem cell therapy has been approved for neuropathy, and if I agree to that treatment at Active integrated medicine in Downingtown, PA, how do I find out if that facility is qualified to use stem therapy for neuropathy?

Jump to this post

Hello @eirea, Welcome to Connect. I'm just a patient like yourself but have thought stem cell therapy might be the answer for neuropathy but my gut feeling is that it's not there yet. There is another discussion you might want to join where other members like yourself have asked similar questions.

--- Does Stem Cell Therapy work for Neuropathy?: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/.

You might also find the resources from the International Society for Stem Cell Research helpful:
--- Patient Guide to Stem Cell Treatments: https://www.aboutstemcells.org/info/patient-guide
--- Stem Cell Treatments: https://www.aboutstemcells.org/treatments

I would be cautious with any neuropathy clinic touting stem cell therapy as it's not covered by insurance and costs a considerable amount of money.

REPLY
eirea | @eirea | Apr 25 10:58am

Thank you so much.Very helpful!

REPLY
jgoodall | @jgoodall | Apr 25 11:56am
In reply to @johnbishop "Welcome @jgoodall, A sunny disposition goes along way when dealing with neuropathy and a lot of..." + (show)
@johnbishop

Welcome @jgoodall, A sunny disposition goes along way when dealing with neuropathy and a lot of other conditions. It sounds like you have done some homework on learning what changes you can make that provide some relief. Learning as much as you can about your conditions and what may help is key to becoming a better advocate for your health. I'm not sure if you have seen these neuropathy related sites but both contain a lot of helpful information for learning more including some good references and webinars.

--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/index.php/neuropathy/neuropathy-overview

You mentioned erythromyelagia and Sjogren’s along with the neuropathy. Have you tried using search on Connect at the top of any page to find other discussions that might provide some information and suggestions?

Jump to this post

Hello,
Do I reply to all or just to one person? I am still learning this format. If I add specific people does that mean they get a notification that I replied?

I have started to look at the FPN website and it is incredible. Thanks. Again, I would have not known about those resources if I had not found MayoConnect!

I did search for discussions about Sjogren's and erythromyelagia but I did not find a lot. I will try a bit harder! I would be interested in finding another few humans who have the combo of conditions that I have!

Thanks!

REPLY
1 reply
jgoodall | @jgoodall | Apr 25 12:06pm
In reply to @dlydailyhope "@jgoodall I am a 54 year old female and have small fiber neuropathy and a huge..." + (show)
@dlydailyhope

@jgoodall
I am a 54 year old female and have small fiber neuropathy and a huge list of other symptoms. Have you tried taking Acetyl L Carnitine and Alpha Lipoic Acid supplements for neuropathy pain? They have helped me some. I started taking them when I was first diagnosed with SFN. Also, do you use lidocaine pain patches (Salonpas is my favorite brand) and capsaicin/CBD nerve pain creams? I do get burning and pain on my feet and face that seems to come and go with flares. It seems many neurologists and doctors don’t really know the cause of many nerve diseases and they play whack-a-mole with us trying different things that don’t work. I do question the toxins in air, water, food, medications (OTC and Rx), and household items, etc. being a source of many diseases that cause nerve damage. It seems we need to detoxify as best as possible to prevent further damage while trying to get relief of current symptoms. Many of the things that might help us feel better won’t come from doctors because they are limited of knowledge beyond prescription medication, diagnostic testing, etc. They know little about diet, nutrition, supplements, holistic medicine, etc.

Jump to this post

Hello,

I have not tried Acetyl L Carnitine and Alpha Lipoic Acid supplements. I will look into them! Thanks!
I learned from the Foundation for Peripheral Neuropathy webinar that since I have non-length dependent small fiber neuropathy, Sjogren's autoimmune disease is the cause of my sfn. I am reaching out to a new rheumatologist who treats Sjogren's and I am hopeful that getting the autoimmune disease under control (if possible) may reduce the sfn. and erythromyelagia burning fire flares too.
My eyes are so dry and I have not been able to get the dryness under control. The opthamalogist has tried EVERYTHING. I even get tears made from my blood serum and that still does nothing. Hopefully, some immunosuppressants will help my entire system. Crossing my fingers that I can get some better relief.

REPLY
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