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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.

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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

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1 reply
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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)
Profile picture for dig2dye2 @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?

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

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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)
Profile picture for John, Volunteer Mentor @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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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.

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michael149 | @michael149 | Feb 4, 2023

physicalt h erapye xercisesh as-helped-me-alot -g ood-t o-work-with -A-pt-who-specializes-in-neuropathy

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civbrown | @civbrown | Feb 4, 2023

I am interested in neuropathy. As of now, I have this on my feet. I'm not a diabetic and hope to learn how to prevent this from spreading.
Thank you,
civbrown

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NJ Ed | @njed | Feb 5, 2023
In reply to @ga33 "You described your back as if you were looking at my MRI, bulging disc and all...." + (show)
Profile picture for ga33 @ga33

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.

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ga33 - yes, add me to that list. I have "issues" from L-3 to S-1, various MRI's since 2015 and I was told as recent as 2021 that although I have back issues, these are not bad enough to cause my idiopathic sensory motor axonal PN. But, when neuro doc simply touches my lower back with finger tip, my ankles and feet tingle like mad bilateral. I've asked several docs what causes that....none have given me an answer. I asked about pinched nerve..."oh no". So, bottom line in medicine is to cause no harm. Period.

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Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Feb 5, 2023
In reply to @mhr31 "I was born with CMT [CHARCO MARIE TOOTH] .CMT is a progressive neuromuscular disease that damages..." + (show)
Profile picture for mhr31 @mhr31

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.

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Hello @mhr31, Welcome to Connect. The weather affects my neuropathy also but I just have the numbness and some tingling. I know the burning pain and muscles spasms make it a lot worse. I know that you are not alone and hoping that you can find some answers that may provide some relief. There are a couple of discussions you might find helpful. One is an older discussion but I think still has members that are still active on Connect. Tagging them by typing their @ member name might be useful for asking questions.

-- CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD:
https://connect.mayoclinic.org/discussion/cmtcharcot-marie-tooth-disease-type-2-neurological-disorder-form-of-md/.
-- Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/.

The CMT Research Foundation has a series of videos you might find helpful if you have not already seen them or visited the website: https://cmtrf.org/video-series-with-research-experts/.

Have you found any home remedies or therapies that provide some relief for the worsening symptoms at night?

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michael149 | @michael149 | Feb 5, 2023
In reply to @julbpat "“Taking Haldol for 48 years for severe Tourette syndrome” is what this says." + (show)
Profile picture for julbpat @julbpat

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

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also-doing -exercises-with aphysicaltherapist speciaizingin-n europathyhas-h elped-me-alot

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 5, 2023
In reply to @bettyju "Hoping to gain both advice and support.. Ive been dealing with 'peripheral Neuropathy for 7 years..." + (show)
Profile picture for bettyju @bettyju

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!

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Welcome @bettyju. Ouch and no fun are putting it mildly. 🙃 I know it's not easy staying positive but I think you have the right attitude. We all just need to become better advocates for our conditions by learning as much as we can about the condition and the different treatments available. My two favorite sites for learning...

-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Have you done any research on your condition?

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krbrubak | @krbrubak | Feb 5, 2023

I am already receiving the newsletter. Don’t need another copy.
Thank you.

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