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.

ga33 | @ga33 | Feb 3, 2023
In reply to @johnbishop "Hi @ga33, Welcome to Connect. Glad you found this discussion. It does help to live one..." + (show)
@johnbishop

Hi @ga33, Welcome to Connect. Glad you found this discussion. It does help to live one day at a time and enjoy it the best you can. What helps me is to stay as active as I can and learn something new everyday...sometimes that something new is something I relearned 🙃

Do you have pain with your neuropathy or is it mostly numbness like mine?

Jump to this post

Thanks for replying. Depending on the area, symptoms are strongest as I try to sleep and especially when awaking in the morning. I know pain from lower back and sciatica and this is not it. Burning, tingling, weakness and balance problems, however, are it. Symptoms were once confined to both feet but have advanced to the knees. Takes me a few careful minutes getting myself adjusted to meet the day. All this and I'm still very active and respond well to gabapentin 2400 mg daily, acupuncture once weekly and walking in the swimming pool are all beneficial.
Thinking I talk too much.

REPLY
1 reply
ga33 | @ga33 | 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..

Jump to this post

You described your back as if you were looking at my MRI, bulging disc and all. I am new here but in a few minutes I realized the extensive chronic and/or acute medical issues many of us have in common. I also have come to realize that many of these issues are autoimmune in nature as an MD once described Neuropathy. I turned down surgery at the last minute because my surgeon said he could only lessen my pain by about 40% and at my age and with a weak heart I thought the risk wasn't worth it. Your last sentence says a lot to me....I totally agree.

REPLY
2 replies
ga33 | @ga33 | Feb 3, 2023
In reply to @cgs "I understand,I am 73 and have diabetic neuropath I take gabapentin and think and pray about..." + (show)
@cgs

I understand,I am 73 and have diabetic neuropath
I take gabapentin and think and pray about the future and how it will be here in this life. I hope that there may be a medical treatment or discovery soon. I am ok on my medication I pray it will improve or at least stay as it is.

Jump to this post

Thanks for the reply.

REPLY
bettyju | @bettyju | Feb 3, 2023

Hoping to gain both advice and support.. Ive been dealing with 'peripheral Neuropathy for 7 years following an ankle fracture . NO FUN! I feel like so much of my active life style has been taken away ... I have tried just about every modality .. But keep hope that if I build muscle strength I will keep balance , cover more distances, climb stairs and will be better deal with sudden SHARP spikes in pain that feel like a HORNETs nest. The realization that If I favor my ankle then the knee gets involved. OUCH!
Gabapentin sent me into hallucinations!

REPLY
1 reply
wbblanche | @wbblanche | Feb 4, 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.

Jump to this post

I have developed high heart rate and dizzy when I stand or lift a heavy pail of water, etc. Didn’t associate that with my neuropathy. Sure it’s the same thing?

REPLY
julbpat | @julbpat | Feb 4, 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

Jump to this post

“Taking Haldol for 48 years for severe Tourette syndrome” is what this says.

REPLY
1 reply
aaron_az | @aaroncush | Feb 4, 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.

Jump to this post

@gbny1224 and @wbblanche have a look at this Cleveland Clinic JoM article on small fiber neuropathy where it discusses autonomic neuropathy and dysautonomia: https://www.ccjm.org/content/85/10/801

And this page from the Cleveland Clinic going into more detail on dysautonomia: https://my.clevelandclinic.org/health/diseases/6004-dysautonomia

It is possible.

REPLY
cgs | @cgs | Feb 4, 2023

Does anyone on here have a problem with drinking three or four cups of coffee sometimes for their achiness when they get up in the morning and do they have problems with that affecting their neuropathy in any way because of the caffeine

REPLY
1 reply
jagtejchawla03 | @jagtejchawla03 | Feb 4, 2023
In reply to @dig2dye2 "I had a traumatic fall in July of 2022. I tripped and landed on my right..." + (show)
@dig2dye2

I had a traumatic fall in July of 2022. I tripped and landed on my right knee. The rest of my body including my face went straight into the concrete. I shattered my patella and required surgery. Lost a tooth and lots if scapes and bruises.

Here I am seven months later and I have bilateral neuropathy symptoms up to my knees.

Tests for SFN and LFN both came back negative. Neurologists have been unable to identify the reason.

Can trauma cause this type of reaction?

Jump to this post

Hi, honestly wish you a fast recovery and wish you all the best. Hugs.

REPLY
mhr31 | @mhr31 | Feb 4, 2023
In reply to @johnbishop "Thank you Colleen and Mayo Connect! @jimhd @bburleson1 @swiss @hollander @fonda @gratefulone @mikween @aliskahan @grandma41 @rabbit10..." + (show)
@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

Jump to this post

I was born with CMT [CHARCO MARIE TOOTH] .CMT is a progressive neuromuscular disease that damages the peripheral nerves,creating muscle atrophy, sensory loss and disability. CMT affects an astounding 3 million people of all ages worldwide. There is currently no cure for CMT. My legs and hands are severely affected. I wear braces on my feet and legs that helps with drop foot and enables me to stand for short time. The burning from the Neuropathy and the muscle spasms are of course worse at night or when the weather changes in any way.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.