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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.

rannr | @rannr | 2 days ago
In reply to @johnbishop "Welcome @rannr, I think all of us folks with neuropathy struggle with balance and exercise is..." + (show)
@johnbishop

Welcome @rannr, I think all of us folks with neuropathy struggle with balance and exercise is key to improving our quality of life. Here are a couple of balance articles from the Foundation of Peripheral Neuropathy:

-- Alternative Therapies That Enhance Balance: https://www.foundationforpn.org/brain-based-balance-exercises/
-- Maintaining Balance: https://www.foundationforpn.org/maintaining-balance/

Here's a YouTube video that I thought was helpful to understanding the challenges and what to work on. I like that it points out that certain types of shoes may cause more balance problems for people with neuropathy. - Standing Balance for People with Peripheral Neuropathy: https://www.youtube.com/watch?v=j1bjDmmpPkw

How is your PT going?

Jump to this post

Finally seeing improvement.watched video just now It had some new points for me. Thanks for fast reply and help. Glad I joined.

REPLY
rannr | @rannr | 1 day ago
In reply to @rollo8 "I have found that doing some leg exercises and foot exercises and just generally keep moving,..." + (show)
@rollo8

I have found that doing some leg exercises and foot exercises and just generally keep moving, daily, has made me feel stronger. I use a recumbent bike or a portable elliptical daily. I was never offered Physical Therapy by my primary, a neurologist, or the podiatrist. I went from a cane to a walker very quickly. I could not use a cane on pavement. Now that my legs feel stronger, I have asked my primary for a referral to PT for balance and gait training. My hope is to be 'taught' how to safely use a cane outside of the house. Getting a walker into a car is tricky.
Are you presently taking PT? I hope they address your concerns.

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Thanks for replying. Yes,I’m taking pt cause of Dec fall. Just now seeing lots of improvement. You’ve encouraged me to dust off my exercise bike

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rollo8 | @rollo8 | 1 day ago
In reply to @johnbishop "Welcome @rannr, I think all of us folks with neuropathy struggle with balance and exercise is..." + (show)
@johnbishop

Welcome @rannr, I think all of us folks with neuropathy struggle with balance and exercise is key to improving our quality of life. Here are a couple of balance articles from the Foundation of Peripheral Neuropathy:

-- Alternative Therapies That Enhance Balance: https://www.foundationforpn.org/brain-based-balance-exercises/
-- Maintaining Balance: https://www.foundationforpn.org/maintaining-balance/

Here's a YouTube video that I thought was helpful to understanding the challenges and what to work on. I like that it points out that certain types of shoes may cause more balance problems for people with neuropathy. - Standing Balance for People with Peripheral Neuropathy: https://www.youtube.com/watch?v=j1bjDmmpPkw

How is your PT going?

Jump to this post

The Mission Gait video was extremely helpful. Thank you.

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matt2374 | @matt2374 | 1 day ago

Margaret Callaghan. I have neuropathy in my left leg and foot resulting from spine fusion surgery in 2016.
I have been getting stabbing sharp electric shock type pains in my foot and wondered if anyone else gets these. I have tried ice and heat which help a little. Please let me know of any remedies. Thank you

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1 reply
andyjustin | @andyjustin | 12 hours ago

I was diagnosed with peripheral neuropathy in January 23 I went to Treatment at a chiropractic clinic that use blueprint supplements over the next six months my peripheral neuropathy was re-diagnosed as autonomic neuropathy. I was in pain I was prescribed gabapentin. I started at 900 mg two years later. I am up to 1500 mg supplemented by 100 mg of pregabalin every day. I lead a very healthy lifestyle and have been able to deal with the fact that there is no cure that I will live with this for the rest of my life. I’ve heard lots of people who write about not wanting to take medicine and keep searching for alternative means the way I look at it is I like to live my life every day and if the medications I take and enable me to do so without pain for the most part, there’s no reason why I shouldn’t take them. I’ve had many people offer me homeopathic remedies, but the fact of the matter is medication works, I function at a high level if I didn’t take the medication I am a blathering pool of pain unable to concentrate. I don’t mind I should actually say with the medication I function normally I mean plainly it’s a new normal, but I can go about my daily business that’s all I have to say today hello

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Mentor
John, Volunteer Mentor | @johnbishop | 11 hours ago
In reply to @matt2374 "Margaret Callaghan. I have neuropathy in my left leg and foot resulting from spine fusion surgery..." + (show)
@matt2374

Margaret Callaghan. I have neuropathy in my left leg and foot resulting from spine fusion surgery in 2016.
I have been getting stabbing sharp electric shock type pains in my foot and wondered if anyone else gets these. I have tried ice and heat which help a little. Please let me know of any remedies. Thank you

Jump to this post

Welcome @matt2374, You might find it helpful to scan through the different discussions related to electric shock type pain. Here's a search link that lists the discussions and comments - https://connect.mayoclinic.org/search/?search=electric+shocks+feet.

Since you mentioned the neuropathy was a result of spine fusion surgery, I'm wondering if Myofascial Release Therapy (MFR) might be an option. There is a discussion started by @jenniferhunter on MFR if you would like to learn more about MFR - https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/.

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