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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 | Feb 3, 2023
In reply to @michael149 "correct Ihav en opain b utsomelackofcoordin ation of mybodyan dpermanen tnumb nessinmyfeet-Itiscausedb ytaking haldolf or48yrsforse veretourettesyn..." + (show)
@michael149

correct Ihav en opain b utsomelackofcoordin ation of mybodyan dpermanen tnumb nessinmyfeet-Itiscausedb ytaking haldolf or48yrsforse veretourettesyn drome-Iha v etriedev erydrug for neuropathyaccordin g tommyneurologist

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Have you tried any complementary or alternative treatments for neuropathy?
-- https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf

You might want to discuss some of these treatments with your neurologist or doctor to see if one may help.

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michael149 | @michael149 | Feb 3, 2023

I-ha ve-tried-ever y-pr esc r t ion dr ug -f or-n europathy -I-do5-exerc ises-3t imesadayt augh t t omeb yaphysic alt h er apist

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jhumm | @jhumm | Feb 3, 2023
In reply to @mkyearout "My name is Michael and I agree. I've had idiopathic peripheral neuropathy for around 15 years..." + (show)
@mkyearout

My name is Michael and I agree. I've had idiopathic peripheral neuropathy for around 15 years (I'm 73 now). It's mostly in my right foot. I'm pretty sure mine was caused by decreased blood flow to my lower legs. I also have atherosclerosis which has forced me to have stents and finally a quadruple bypass in 2018. A vascular surgeon has performed a couple of operations trying to open up some of the blockages in my arteries in my right leg with poor results. And I have Inflammatory Bowel Disease. Nice combination, huh?

Exercise helps. I try to do a mile every other day on my treadmill and some Pilates work other days. My Dr. has given me an Rx for a topical cream that my compounding pharmacy makes that helps. It has this long name: Gaba/Keta/Clon/Amit/Lido 10/10/0.2/2/5% Active. I usually rub it on in the morning and it lasts for a few hours. I also find a TENS machine helps a little - I use it almost every evening. And some devices that squeeze and release both my calves (I'm hoping that increases the blood flow).

Other than that, I feel fine!

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Though some of the details of our PN struggles may be different in essence we are all walking this very hilly road together.
It sounds like you have found some helpful aids to living a reasonably "normal" life. Onward we walk.

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1 reply
mkyearout | @mkyearout | Feb 3, 2023
In reply to @jhumm "Though some of the details of our PN struggles may be different in essence we are..." + (show)
@jhumm

Though some of the details of our PN struggles may be different in essence we are all walking this very hilly road together.
It sounds like you have found some helpful aids to living a reasonably "normal" life. Onward we walk.

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Yes, we are all on the same path. I can only walk about half a block before I have to stop and let the blood flow catch up in my calves. But indoors I can do an entire mile on the treadmill at about 2 miles an hour. I guess the difference is the treadmill is flat while outside the terrain varies.

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jimsmith12 | @jimsmith12 | Feb 3, 2023

Hi My name is Jim. I am a lung cancer patient and still going through treatment after almost three years. I have peripheral neuropathy which makes the bottom of my feet numb. Sometimes my finger tips get numb but not often. I have tried acupuncture for three months which did not help much. I use analgesic cremes which help very little.Any advice or questions welcome. Best Jim

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lindawishart | @lindawishart | Feb 3, 2023
In reply to @johnbishop "Hi Linda, Welcome to Connect. The neuropathy symptoms can be treated but I don't believe I've..." + (show)
@johnbishop

Hi Linda, Welcome to Connect. The neuropathy symptoms can be treated but I don't believe I've read of a cure in reliable information. I have read that it may be possible to reverse diabetic neuropathy but there are a lot of unknowns involved. Also, my own personal opinion is that if the neuropathy is caused by nerve compression and that can be fixed to relieve the symptoms that might be considered a cure by some. The best chance we have is to learn as much as we can about our condition and what treatments are available that might help. Here are my two favorite sites for learning more:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Have you been diagnosed with neuropathy? Can you share a little more about your symptoms and any treatments you've tried?

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Thanks for your input, truly appreciate the info. Plan to go ahead with the decompression laminectomy and will report on results.

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cgs | @cgs | Feb 3, 2023
In reply to @romans8 "I just joined this conversation. I have been diagnosed with peripheral sensory neuropathy, small fiber neuropathy,..." + (show)
@romans8

I just joined this conversation. I have been diagnosed with peripheral sensory neuropathy, small fiber neuropathy, and pudendal neuralgia. I have pain every day. I am interested in learning how others are dealing with the chronic pain.

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Gabapentin helps me alot. Calgary neuropathy associatuon is a good resourse. Loma linda university offers a new technique..I called and would like to go,I am a caregiver for my wife at this time.I am 73 so I am of course apprehensive of my neuropathy
Diabetic and fighting to control and change foods and portions. Wanting to plan ahead before I reach the limit on med that my Dr has told me exists.
Praying very often I know God is in control.Jesus was no stranger to suffering.

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cgs | @cgs | Feb 3, 2023
In reply to @dig2dye2 "Yes I have and yes I got a second opinion. Both from neurologists. First neuro ordered..." + (show)
@dig2dye2

Yes I have and yes I got a second opinion. Both from neurologists.

First neuro ordered tests. All were negative. She also ordered two MRI’s.

The cervical and lumbar MRI’s both showed degenerative changes. First and second neuro both agreed that did not give me a neuropathy.

However, I saw on the report a bulging disc and mild formalin narrowing in the L4-5 region.

Initially, I thought the bulging disc could be doing this. Neuro disagreed.

Second ordered a third and fourth MRI: brain and thoracic.

Those are pending.

I don’t know who I should go see, if anyone since no one seems to have a clue..

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Call loma linda university I was offered a free conseltation I have not called yet.I have called Mayo,and clevland clinic for costs and services. Iam caregiver for my wife I am 73 she is 72 I am praying about guidance at this time.My doctor has increased gabapentin for second time in 4 -5 years. He has told me there is a limit on this med.

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gbny1224 | @gbny1224 | Feb 3, 2023

How bad are your flare ups ? I'm getting flare ups just out of the blue every day they last about 15 mins. Suicide level pain on the legs and somewhat on the shoukders. The worse one I had the other day my legs and shoulders hurt and was crying for about 40 mins. Also my arms hands and head were burning. I got in my truck and was headed to the er because this one lasted much longer. I ended up turning around when it finally went away. Not much they can do pointless to go really.

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4 replies
aaron_az | @aaroncush | Feb 3, 2023
In reply to @gbny1224 "How bad are your flare ups ? I'm getting flare ups just out of the blue..." + (show)
@gbny1224

How bad are your flare ups ? I'm getting flare ups just out of the blue every day they last about 15 mins. Suicide level pain on the legs and somewhat on the shoukders. The worse one I had the other day my legs and shoulders hurt and was crying for about 40 mins. Also my arms hands and head were burning. I got in my truck and was headed to the er because this one lasted much longer. I ended up turning around when it finally went away. Not much they can do pointless to go really.

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@gbny1224 sorry to hear you are going through this. For me, it is more like a staggered rise in pain. Basically pain increases, then have to adjust what I take to better control the pain, that then works for a period of time (weeks to months), and then pain increases again. Unfortunately the plateaus of relative pain relief are getting shorter and the pain increases more difficult to control.

I have made peace (as much as possible) with what is going on and won’t go back to the doctor or ER and just late fate run its course.

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