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.

Profile picture for John, Volunteer Mentor @johnbishop

Hello @bunting, Welcome to Connect. I think it is really good that you are being proactive and looking for options to help with your pain and you have a Pain Management doctor working with you trying to help. I hope you are able to provide an update after you see the neurologist in San Antonio. From your post it sounds similar to the pain from sciatica which is described in an article here --- All About the L4-L5 Spinal Segment: https://www.spine-health.com/conditions/spine-anatomy/all-about-l4-l5-spinal-segment

I think you might find the following discussions helpful also:
-- Sciatica: https://connect.mayoclinic.org/discussion/sciatica-3/
-- Sciatic nerve pain: https://connect.mayoclinic.org/discussion/sciatic-nerve-pain/
-- Sciatica pain: https://connect.mayoclinic.org/discussion/sciatica-pain/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Can you let us know how your appointment goes with the neurologist?

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John, I recently saw information in a device called Sprint Endura which according to my reading is supposedly great for neuropathy pain. I was wondering if anyone else had tried this and the outcomes. Not sure where to post this question. Thanks. Cathy

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Profile picture for mcd123 @mcd123

John, I recently saw information in a device called Sprint Endura which according to my reading is supposedly great for neuropathy pain. I was wondering if anyone else had tried this and the outcomes. Not sure where to post this question. Thanks. Cathy

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Hi Cathy @mcd123, There is another discussion on the device where you can learn what members have shared about it. I also responded to you in the following discussion so that you will get an email notification and can go directly to the discussion.

SPR Peripheral Nerve Stimulator (SPRINT): https://connect.mayoclinic.org/discussion/spr-peripheral-nerve-stimulator-sprint/

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I would like to get feedback on dealing with nondiabetic neuropathy. It is ruling my life. ☹

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Profile picture for suzirtist @suzirtist

I would like to get feedback on dealing with nondiabetic neuropathy. It is ruling my life. ☹

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Hello @suzirtist and welcome to Mayo Clinic Connect. I am sorry to read that your neuropathy is ruling your life. Let's see if we can make some connections here for you to take back your life, even if just baby steps.

First, since you mention you have non-diabetic neuropathy, I just wanted to make sure I have this right that your diagnosis was for Peripheral Neuropathy. Is that right? If so, here is some basic information you may have already come across.

- Peripheral Neuropathy:
https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061
Are you on any medication(s) right now for the neuropathy? How is this ruling your life?

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Profile picture for Amanda Roe @amandajro

Hello @suzirtist and welcome to Mayo Clinic Connect. I am sorry to read that your neuropathy is ruling your life. Let's see if we can make some connections here for you to take back your life, even if just baby steps.

First, since you mention you have non-diabetic neuropathy, I just wanted to make sure I have this right that your diagnosis was for Peripheral Neuropathy. Is that right? If so, here is some basic information you may have already come across.

- Peripheral Neuropathy:
https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061
Are you on any medication(s) right now for the neuropathy? How is this ruling your life?

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Every minute is painful!!! Best described like folks sitting around a campfire visiting, but mu legs are in the fire!!!!It is never ending and effects by balance as well. Nothing has helped and I have good medical coverage as well. Terrible!!!

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Profile picture for madgemgunia @madgemgunia

Every minute is painful!!! Best described like folks sitting around a campfire visiting, but mu legs are in the fire!!!!It is never ending and effects by balance as well. Nothing has helped and I have good medical coverage as well. Terrible!!!

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I have a stabbing pain in my left foot only. Also no feeling in my feet and hands. And if I can go more than one month w/o falling, I consider that a victory. My neurologist prescribes a drug that allows me to sleep at night.

I am sorry to hear about your symptoms and hope you can find something to relieve your pain.

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Has anyone had experience w/ a pudendal block, or saddle block to reduce abdominal and rectal area pain?

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I am scheduled for the booster covid Pfizer shot on Wednesday and I have mixed feelings. Everyone I know has gotten it and no reaction. I was with fever and muscle aches after second shot only lasted a day. However since then I have been diagnosed with idiopathic axonal sensory motor peripheral neuropathy. I feel it in my feet stiff and partially numb. I also have been experiencing over a month violent migraine like headaches. All tests negative. Drs feel tmj and cervical arthritis. I am very concerned about getting the shot after reading all the comments. Is their any real evidence out there. Will be flying end of month to our new home in Arizona and I am around my young grandchildren so I do want to be protected. I worry either way. All these comments worry me to go ahead and get shot. Pharmacist didn’t have any information regarding neuropathy. Thankyou for any information that can be provided.

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Colleen do you or Mayo Clinic have any info regarding covid booster and neuropathy. I am unable to get appt with neurologist there.

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Profile picture for silvern12 @silvern12

Colleen do you or Mayo Clinic have any info regarding covid booster and neuropathy. I am unable to get appt with neurologist there.

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Hello @silvern12, I have not scheduled my COVID booster shot yet but plan to get one later this month or next month. I have small fiber peripheral neuropathy and have had both Pfizer shots with only the normal side effects that most have had. For me the worse being the extreme fatigue the second day after the 2nd shot. Here is some information from Mayo Clinic on the booster that you may find helpful:

Are COVID-19 vaccine boosters or extra shots recommended?: https://www.mayoclinic.org/coronavirus-covid-19/vaccine-boosters

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