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?

@johnbishop

Thank you Colleen and Mayo Connect!

@jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10 @ujeeniack @gailfaith @ridgerunner @joannem @medic7054 @fleure @beckypain66 @philio66 @peggyj4411 @16jody @twinky @martid @grandma41 @pinkmk @crystalgal @gman007 @mari @amkaloha @bobsconnect @salena54 @robertlclark @upnorthnancy @tonyc55 @painwarrior @ladyjane85 @bobe @dbentley @pgjanes @citylady @mfobrien36 @timmckinney @briansr @superwife – Welcome to our new Neuropathy Group!

Our peripheral neuropathy discussion has grown quite large making it a challenge to find the information. We hope our new Neuropathy Group will make it easier for members to find a relevant discussion to ask their questions and share information. If you don’t find a discussion that meets your need then jump right in and create a new one! Be sure to invite other Connect members to join you. Inviting is easy, just tag a member by using their Connect member name which starts with an “@” sign.

The new Neuropathy Group is your community so let’s help each other by sharing your story, asking questions, and learning while we figure out how to deal with our specific type of neuropathy.

John

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Hi everyone I have nuero pathy and major brain fog. I have a chronic illness it’s lovly gives yo7 tons of symptoms. I had it so bad I was tingling in my face my legs my hands felt the paralyzed the EMT after getting my medical recordsd marked me as a psych patient really nice. I am receiving no help. What helps you with this?

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@kansasgal

Summertime4, I had the Mortons Neuroma surgery only on my right foot. Today (1 and a half years after) the pain in both feet is still exactly the same, so I did not have Mortons Neuroma. I also had swelling on the top of my feet, and found out too late that Mortons Neuroma does not cause any swelling. It sounds like we are on the same meds, except I also take Lyrica. It now comes in a generic, so it's a lot more inexpensive than it was last month! Maybe adding Lyrica into your mix might help you as well.

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@kansasgal Thank you for the information. I have terrible swelling on the top of my foot. I have had this for over 8 months. I do believe I also have a Mortons neuroma as the underfoot icing helps. The podiatrist wants me to wear an ankle brace and I understand why. The left side of my foot pain me especially when I walk. I can't find an ankle support that doesn't hurt me. Do you know why the to of you foot swells? Now my other foot is paining me. You know I am ready to just walk away. Maybe the leg swelling is lymphedema. I just don't know. I thought I hit on something with the podiatrist, but now know it is all about neuroma. Did you ever get the cortisone shot in your foot?

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@kittykiernan

Hi everyone I have nuero pathy and major brain fog. I have a chronic illness it’s lovly gives yo7 tons of symptoms. I had it so bad I was tingling in my face my legs my hands felt the paralyzed the EMT after getting my medical recordsd marked me as a psych patient really nice. I am receiving no help. What helps you with this?

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Hi @kittykiernan, are you able to share a little more about your neuropathy diagnosis and what kind of treatments or medications you are taking for your neuropathy? You are definitely not alone with this terrible condition. I have small fiber peripheral neuropathy that mostly affects my feet to just above my ankles. I've shared my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I mainly have numbness and there are no medications that I no of that help with numbness. Here are a couple of articles I found on brain fog that may be helpful.

Six Common Causes of Brain Fog and How To Combat Them
https://www.thorne.com/take-5-daily/article/six-common-causes-of-brain-fog-and-how-to-combat-them

Brain fog: Causes and tips
https://www.medicalnewstoday.com/articles/320111.php

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@jimhd

@rwinney Do you know a link to information about lidocaine infusion?

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Hi Jim @jimhd, Here is the link from Rachel's @rwinney post earlier in the discussion.

Lidocaine-induced Seizures in Patients with History of Epilepsy: Effect of Antiepileptic Drugs
https://anesthesiology.pubs.asahq.org/article.aspx?articleid=1944222

Here are a couple of others that may also be helpful.

Lidocaine Infusion: A Promising Therapeutic Approach for Chronic Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5323245/

Intravenous Lidocaine for Neuropathic Pain: A Retrospective Analysis of Tolerability and Efficacy
https://academic.oup.com/painmedicine/article/16/3/531/2460608

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@johnbishop

Hi @kittykiernan, are you able to share a little more about your neuropathy diagnosis and what kind of treatments or medications you are taking for your neuropathy? You are definitely not alone with this terrible condition. I have small fiber peripheral neuropathy that mostly affects my feet to just above my ankles. I've shared my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

I mainly have numbness and there are no medications that I no of that help with numbness. Here are a couple of articles I found on brain fog that may be helpful.

Six Common Causes of Brain Fog and How To Combat Them
https://www.thorne.com/take-5-daily/article/six-common-causes-of-brain-fog-and-how-to-combat-them

Brain fog: Causes and tips
https://www.medicalnewstoday.com/articles/320111.php

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I have a chronic illness that effects your whole body with different symptoms, it’s lovely. I get it in my feet and wrists really bad

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I am fighting polyneuropathy with no apparent help from the many doctors I've seen. They seem to do all the correct and accepted treatments and tests; however, I still have unremitting pain. What can I do to help myself??? Would appreciate any hints. Thank you.

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@kittykiernan

I have a chronic illness that effects your whole body with different symptoms, it’s lovely. I get it in my feet and wrists really bad

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They tell me it's Chiari malformation and a cyst in my spine. But don't know witch one is cause ing the nerve pain! They want to cut my head open but my husband thinks that want Help! Please help with a repely,tired of the pain.suppose to have surgery on Sept 4th and not sure if I should do it!

Liked by Leonard

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@hertz

I am fighting polyneuropathy with no apparent help from the many doctors I've seen. They seem to do all the correct and accepted treatments and tests; however, I still have unremitting pain. What can I do to help myself??? Would appreciate any hints. Thank you.

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I understand your pain. They say I have Chiari malformation and don t think I need a second opinion! Really! Just cut my head open! Have you been to a nerve doctor? I'm praying for you that you find some answers, and know God is with you!

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@resawaller

I understand your pain. They say I have Chiari malformation and don t think I need a second opinion! Really! Just cut my head open! Have you been to a nerve doctor? I'm praying for you that you find some answers, and know God is with you!

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Thank you for your best wishes. I'm returning same to you. We neither have a magic cure I guess.

Liked by Leonard, cocodab

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@hertz

I am fighting polyneuropathy with no apparent help from the many doctors I've seen. They seem to do all the correct and accepted treatments and tests; however, I still have unremitting pain. What can I do to help myself??? Would appreciate any hints. Thank you.

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Medical marijuana

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@resawaller

I understand your pain. They say I have Chiari malformation and don t think I need a second opinion! Really! Just cut my head open! Have you been to a nerve doctor? I'm praying for you that you find some answers, and know God is with you!

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Hi @hertz, Welcome to Connect. The best thing you can do to help yourself is learn as much as you can about your health conditions and what others have found helpful. You will get a lot of suggestions from others who share your symptoms.

You may want to check out the following discussion to meet others discussing polyneuropathy.
> Groups > Neuropathy > Anyone been diagnosed with CIDP? It's very rare
https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/

What have your doctors or neurologists given you to treat the pain?

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@resawaller

They tell me it's Chiari malformation and a cyst in my spine. But don't know witch one is cause ing the nerve pain! They want to cut my head open but my husband thinks that want Help! Please help with a repely,tired of the pain.suppose to have surgery on Sept 4th and not sure if I should do it!

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@resawaller have you discussed your feelings about the surgery with your surgeon? Maybe you can discuss the positives and negatives of possible outcomes with the surgeon to hopefully make you more comfortable having the surgery. Also, have you thought about getting a second opinion?

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@resawaller

They tell me it's Chiari malformation and a cyst in my spine. But don't know witch one is cause ing the nerve pain! They want to cut my head open but my husband thinks that want Help! Please help with a repely,tired of the pain.suppose to have surgery on Sept 4th and not sure if I should do it!

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@resawaller Before letting them cut your head open, please get a 2nd opinion. I had never heard of Chiari malformation unti a few years ago when I connected with my niece in New York. She has it and her life has been a difficult to say the least to live. She is not yet 40 years old and has had many surgeries and has shown me scars and tried to educate the family about Chiari malformation. In fact I believe this to be Chiari malformation education month. She functions a best she can raising a family and now raising her 2 year old grand daughter. I pray for her daily. She had just posted about how few people actually have this disease if a disease is what it is called. Very few and as she says she happens to be one the few. I do not know your medical history or your doctor's advise, but please be sure you are being treated by a surgeon who specializes in Chiari malformation. My prayers are with you.

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