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 ellenshe @ellenshe

I have neuropathy on the bottom of my feet, and in my calves and also in my left palm. I have no pain, only numbness which causes problems with balance. This coupled with essential tremors and orthostatic tremors adds to the balance issue. I currently need a walker to walk outside but can sometimes walk (gingerly!) at home without an aid.
Every doctor I have seen says that neuropathy is "incurable" Has anyone found anything to deal with this problem?
Ms Tess

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Hi, i also can't walk without walker, every doctor says it can't be reversed,.

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Profile picture for crossette @crossette

My doc recomended using Creatine to build muscle strength. It comes as a powder and you mix about 5 grams into water or milk. I also take whey protein powder mixed in too. Take this right before exercicing. There are many studies that show this works to build muscle and I did notice it working for me. Suggested dosages are on the container. These powders are often used by body builders.

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Yes Creatine works well esp prevents lactic acid buildup & I used for many years. As I got older though it didn't work as well, I workout pretty hard & even 20 years ago would be building muscle with this routine, so now thats why im trying DAA. Thank you for replying I wish you well

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Profile picture for colonial1 @colonial1

Thank you everyone. Wishing us all improvement. The following thought is not new but more prominent in my mind. This Peripheral Neuropathy is susceptible to our emotions more than I ever imagined. I’m actively pursuing that realization. Keep you posted.

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Thank you for responding and sharing.
Pursuing counseling and bought a gym membership solely for winter and treadmill. It’s a beginning. I like the protein powder idea.

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Thank you. I look forward to learning more what others may be doing to relieve their Neuropathy symptoms. I generally have no pain as yet, but do experience numbness in both feet and some in my hands/finger tips. I have type 2 diabetes which is responsible for my neuropathy. I would love to get some level of relief in my feet.

Kevin

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Profile picture for crossette @crossette

My doc recomended using Creatine to build muscle strength. It comes as a powder and you mix about 5 grams into water or milk. I also take whey protein powder mixed in too. Take this right before exercicing. There are many studies that show this works to build muscle and I did notice it working for me. Suggested dosages are on the container. These powders are often used by body builders.

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What brand Creatine are you using? I work out daily and seems I have reached a plateau in weight and if I skip a few days seems I lose muscle mass. Being 68 I assume age has something to do with it, but looking for options to enhance my workouts and building muscle.

Thanks

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Profile picture for jagtejchawla03 @jagtejchawla03

Hi, i also can't walk without walker, every doctor says it can't be reversed,.

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Have you checked with loma linda University? Or any other neuropathy clinic? I have not for my neuropathy I am on intermediate dose gabapentin.

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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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Profile picture for jhumm @jhumm

I found this quote in a 12 page article in the Cleveland Clinic Journal of Medicine, " peripheral neuropathy is the most common reason for an outpatient neurology visits in the United States and accounts for over $10 billion in healthcare spending each year."
If this is the case I can't understand why it isn't taken more seriously.
https://www.ccjm.org/content/ccjom/85/10/801.full.pdf

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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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Profile picture for romans8 @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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Have had gabapentin? I have feet and leg nerve pain. At first a hot bath would let me get to sleep,now I have had to have gabapentin to sleep.

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Profile picture for cgs @cgs

Have had gabapentin? I have feet and leg nerve pain. At first a hot bath would let me get to sleep,now I have had to have gabapentin to sleep.

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Ihad badsideeffectsandIhav enopainwithmyneuropahty

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