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?

@grandmar

@hopeful33250
Hi Teresa,
I actually just mentioned it either yesterday or today.
My toe nails are breaking like crazy, and vertically (ouch).
I keep my nails as short as possible and I get a pedi every 3 to 4 weeks.
It just started about 2 pedis ago.
That is when my first thyroid test came back crazy!!
Who knew????
Ronnie

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@grandmar Thanks for the explanation. I wasn't aware that the breaking of nails was a sign of thyroid problems either. That is interesting. The vertical breaks have to be very painful 😢

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@johnkatie

My story , the doctor told me I have neuropathy , started with burning feet for awhile then went to numbness in my feet and toes. My blood work all came back good but my glucose which was 120 and I have been told for 10 years I am pre diabetic but not type 2. It has now been 4 weeks and actual the pain in my feet only comes at night and it is not real bad some aspirin will calm it down. Here are all my questions. could neuropathy stay just in my feet , is leg weakness normal ? i also have lots of muscle twitching mostly in my legs but twitches can occur anywhere , arms shoulders , abdomen . I also get lightheaded at times . Are these symptoms normal ? Thanks for all comments,

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Hi @johnkatie, welcome to Connect. There is another discussion on Connect where your post may receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

From what I have read neuropathy is a progressive disease but each of us are different in how it affects us. Here's a good resource for more information.

Peripheral Neuropathy Fact Sheet
https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Peripheral-Neuropathy-Fact-Sheet

You mentioned your doctors say you are pre-diabetic. Have you been working on lowering your glucose levels? I have no medical training or background but I have the same situation as you have – my doctors have told me for quite awhile that I am pre-diabetic and I've mostly ignored it until I found out sugar is bad when you have neuropathy (probably even if you don't have it ☺) so I've been working on lowering my glucose levels for the past 3 or 4 years. It still is a struggle though.

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@johnkatie

My story , the doctor told me I have neuropathy , started with burning feet for awhile then went to numbness in my feet and toes. My blood work all came back good but my glucose which was 120 and I have been told for 10 years I am pre diabetic but not type 2. It has now been 4 weeks and actual the pain in my feet only comes at night and it is not real bad some aspirin will calm it down. Here are all my questions. could neuropathy stay just in my feet , is leg weakness normal ? i also have lots of muscle twitching mostly in my legs but twitches can occur anywhere , arms shoulders , abdomen . I also get lightheaded at times . Are these symptoms normal ? Thanks for all comments,

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Thanks John I started eating better I will go to the other discussion and see what others are saying ,,,,,,,, thanks again

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My story , the doctor told me I have neuropathy , started with burning feet for awhile then went to numbness in my feet and toes. My blood work all came back good but my glucose which was 120 and I have been told for 10 years I am pre diabetic but not type 2. It has now been 4 weeks and actual the pain in my feet only comes at night and it is not real bad some aspirin will calm it down. Here are all my questions. could neuropathy stay just in my feet , is leg weakness normal ? i also have lots of muscle twitching mostly in my legs but twitches can occur anywhere , arms shoulders , abdomen . I also get lightheaded at times . Are these symptoms normal ? Thanks for all comments,

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Hello, I was diagnosed with small fiber neuropathy in 2014. I now have a herna, seeing surgeon soon. Is surgery a concern for someone with SFN? I am 64 years old. Thanks all.

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@doneuro

Hello, I was diagnosed with small fiber neuropathy in 2014. I now have a herna, seeing surgeon soon. Is surgery a concern for someone with SFN? I am 64 years old. Thanks all.

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@doneuro, Good morning and welcome to Connect. Many in this group of caring folks are dealing with all facets of Small Fiber Neuropathy (SFN). I will tag @jenniferhunter and ask her to share her experience with surgery and SFN. I believe her surgery was at Mayo and she has a great deal of information from her experience. Be safe and have a pain free day.

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@artscaping

@doneuro, Good morning and welcome to Connect. Many in this group of caring folks are dealing with all facets of Small Fiber Neuropathy (SFN). I will tag @jenniferhunter and ask her to share her experience with surgery and SFN. I believe her surgery was at Mayo and she has a great deal of information from her experience. Be safe and have a pain free day.

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Thank you and look forward to Jennifer's response.

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@doneuro

Hello, I was diagnosed with small fiber neuropathy in 2014. I now have a herna, seeing surgeon soon. Is surgery a concern for someone with SFN? I am 64 years old. Thanks all.

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@doneuro My experience is with nerve compression caused by thoracic outlet syndrome, carpal tunnel syndrome, and compression of my spinal cord for which I had spine surgery at Mayo. TOS is a nerve compression under the collar bone in the shoulder and neck. Surgery causes inflammation which is a natural part of the healing process, and with my spine surgery the inflammation laid a framework for bone growth to heal the spine. This also causes some body wide inflammation too, so you might expect some pains in places other than the surgery site. I had to avoid the use of anti-inflammatories during my recovery so I would not affect bone healing. I don't have other types of neuropathy except those that are physical problems. Surgery also causes tight internal scar tissue, but that can be treated after proper healing with myofascial release type physical therapy to loosen the tissues so the body can move properly. My TOS was definitely more painful after my spine surgery because the incision was very close to the area where the TOS is and I could not move because I was in a neck brace for 3 months, but later after working in physical therapy, I'm back to my pre-surgery progress on TOS and progressing again. I am also rebuilding muscle that was lost due to the spinal cord compression.

As for anesthesia and pain drugs affecting neuropathy, that might be a question for your doctor. In looking for literature, I was finding studies about regional anesthesia or the local injections that are used along with general anesthesia. Conceivably, if that injection hits a nerve it could cause damage. You may want to ask the anesthesiologist that works with your surgeon (or ask your surgeon) about complications of anesthesia that could happen given your current health status and the type of neuropathy that you have. This is all detoxified by your liver and kidneys, and your doctor should have done a presurgery physical with blood work to qualify you for the procedure. Diabetes affects all of it too, if that is the cause of your neuropathy. The skin incision itself will severe some superficial nerves and I believe they can regenerate, but get that answer from the surgeon. I had numbness with my incision, but feeling has since come back. Here are some links. I hope this helps.

Myofascial release discussion
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
https://journals.lww.com/anesthesia-analgesia/fulltext/2007/04000/Neurological_Complications_After_Regional.42.aspx
I found this about vision loss after surgery that has to do with the prone position of a patient and reduced blood flow to the optic nerves. That brings up the question, what position will you be in for the surgery, and how could that affect things and cause potential complications? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2699455/

This link talks about staple and mesh repairs causing nerve entrapment.
https://link.springer.com/article/10.1007/BF00705717
This is about the possible sources of pain post op.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1235436/

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I was googling the other day about PN and came across something. I don't know whether it's a gimmick to sell what they call "the elements" of something that actually works for some people. I thought I would ask this group, have you ever heard of "The Protocol"? You can find it at http://solutions2pnpd.com/

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@waltermc

I was googling the other day about PN and came across something. I don't know whether it's a gimmick to sell what they call "the elements" of something that actually works for some people. I thought I would ask this group, have you ever heard of "The Protocol"? You can find it at http://solutions2pnpd.com/

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I have been trying the program for about 100 days and have not seen any improvement. That does not mean that others have or have not had PN relief and are better health that before. So far I have tried many different approaches, the elements, anodyne therapy, massage therapy, chiropratic, accupunture and have not found any relief.
I will continue and if I do find something that works I will shot it from the roof tops.

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@waltermc

I was googling the other day about PN and came across something. I don't know whether it's a gimmick to sell what they call "the elements" of something that actually works for some people. I thought I would ask this group, have you ever heard of "The Protocol"? You can find it at http://solutions2pnpd.com/

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Hello @waltermc, It's not a gimmick and they are not selling anything. To help the members they have assembled a list of links on Amazon where to purchase each of the items. The hemp oil is sold and shipped by the groups leader for convenience and to guarantee freshness which we had a problem with in the early days of the group. A small percentage is added to the hemp oil cost for the H.A.M. (Help Another Member) program for members who can't afford the initial cost to give them a short term supply to get them started.

I have been a member of the group since Aug 2016 and have been taking the over the counter supplements the group suggests. While I only have numbness with my PN (idiopathic small fiber peripheral neuropathy) I feel that it has given me a new normal. When I started taking the supplements in Sept 2016 I had numbness just below both knees. After 2 months of taking the supplements I noticed the numbness seemed to have reduced to just above the ankles. I have not made any progress since then but it also does not seem to have gotten any worse so I'm happy with the results and continue to take the supplements. I'm always hoping for more progress but the bottom line is I am satisfied with my new normal if that's all it is.

The Solutions to Peripheral Neuropathy Pain & Discomfort group (501c3) — http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. The group has over 8,000 members. Most of the members have pain associated with their neuropathy and the protocol of supplements has allowed them to taper off of the prescribed drugs and take only the supplements which treat the pain symptoms. This is not a cure but a natural way to help provide what the nerves need for nutrition to alleviate the pain without taking the common seizure medications used to treat neuropathy (my words).

If you decide to join the group, make sure you read all of the new member welcome information. It's vital to getting off to a good start. You can also do a search of the group for any questions you have. They also have a lot of informative Facebook Live videos hosted by the groups leader where members ask questions and share information.

Last but not least, there are a lot of advertised solutions to treat neuropathy and you definitely need to do your own research. Here's my story posted earlier on Connect on how I found the group and how it has helped me: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Good luck with whatever you decide.

John

Liked by Retired Teacher

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@johnbishop

Hello @waltermc, It's not a gimmick and they are not selling anything. To help the members they have assembled a list of links on Amazon where to purchase each of the items. The hemp oil is sold and shipped by the groups leader for convenience and to guarantee freshness which we had a problem with in the early days of the group. A small percentage is added to the hemp oil cost for the H.A.M. (Help Another Member) program for members who can't afford the initial cost to give them a short term supply to get them started.

I have been a member of the group since Aug 2016 and have been taking the over the counter supplements the group suggests. While I only have numbness with my PN (idiopathic small fiber peripheral neuropathy) I feel that it has given me a new normal. When I started taking the supplements in Sept 2016 I had numbness just below both knees. After 2 months of taking the supplements I noticed the numbness seemed to have reduced to just above the ankles. I have not made any progress since then but it also does not seem to have gotten any worse so I'm happy with the results and continue to take the supplements. I'm always hoping for more progress but the bottom line is I am satisfied with my new normal if that's all it is.

The Solutions to Peripheral Neuropathy Pain & Discomfort group (501c3) — http://www.facebook.com/groups/spnpd – website: http://solutions2pnpd.com/. The group has over 8,000 members. Most of the members have pain associated with their neuropathy and the protocol of supplements has allowed them to taper off of the prescribed drugs and take only the supplements which treat the pain symptoms. This is not a cure but a natural way to help provide what the nerves need for nutrition to alleviate the pain without taking the common seizure medications used to treat neuropathy (my words).

If you decide to join the group, make sure you read all of the new member welcome information. It's vital to getting off to a good start. You can also do a search of the group for any questions you have. They also have a lot of informative Facebook Live videos hosted by the groups leader where members ask questions and share information.

Last but not least, there are a lot of advertised solutions to treat neuropathy and you definitely need to do your own research. Here's my story posted earlier on Connect on how I found the group and how it has helped me: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

Good luck with whatever you decide.

John

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Hi John. I have idiopathic non diabetic small fiber PN. Have even been to Duke and Emory and diagnosis confirmed my Neurologist diagnosis. I have pain only in my feet and ankles which has progressed since diagnosed in 2003 but much worse in last year. I take lyrica and tramodol as needed. I don’t want to get on opioids. They scare me. Have tried anodyne and laser treatments but only gives temporary relief. What are the supplements that you are taking which are helping you? Thanks. Bruce

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@bruce2666

Hi John. I have idiopathic non diabetic small fiber PN. Have even been to Duke and Emory and diagnosis confirmed my Neurologist diagnosis. I have pain only in my feet and ankles which has progressed since diagnosed in 2003 but much worse in last year. I take lyrica and tramodol as needed. I don’t want to get on opioids. They scare me. Have tried anodyne and laser treatments but only gives temporary relief. What are the supplements that you are taking which are helping you? Thanks. Bruce

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By the way John, thanks so much for moderating this group because neuropathy is a complicated and horrible disease.

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I live in Greenville SC and they have an office that uses the Calmare therapy. I called them and they said It is 10 treatments at $225 per treatment and each treatment lasts about an hour. Has anyone used this treatment and if so what were the results? I have idiopathic non diabetic small fiber PN. Thanks. Bruce.
https://carolinapainscrambler.com/

B05AF633-B8D5-478D-8A26-166508BC571B

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@bruce2666

I live in Greenville SC and they have an office that uses the Calmare therapy. I called them and they said It is 10 treatments at $225 per treatment and each treatment lasts about an hour. Has anyone used this treatment and if so what were the results? I have idiopathic non diabetic small fiber PN. Thanks. Bruce.
https://carolinapainscrambler.com/

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Sorry Bruce have heard of it but don’t believe we have it here in San Diego . Been thinking of uses Sanexus which touts nerve regeneration . But haven’t heard from anyone that has had it. When the Dr didn’t even know that B6 irritates and can cause Neuropathy I got nervous . That is 500 dollars a pop. !! A friend advised me to watch the Netflix documentary called healing which I have nothing to lose. My next step is cbd . Good luck let me know how that works if you use it !

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