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.

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)
@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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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)
@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)
@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)
@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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cgs | @cgs | Feb 5, 2023
In reply to @ga33 "Thanks for replying. Depending on the area, symptoms are strongest as I try to sleep and..." + (show)
@ga33

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.

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Very sorry, how long have you had neuropathy?

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

Jump to this post

Is loma lind university and mayo or clinic of any help?

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gleng | @gleng | Feb 5, 2023

My name is Glen G. I have neuropathy in my feet. It started near my toes, but is now spreading to my whole feet. Two Doctors said that nothing can be done for it. I have read that walking and proper diet is the best treatment for it. I have always walked a lot. I belong to two walking groups. After walking a while it feels like I am walking on stumps.

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