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?

@margottaylor Good for you. Restorative is very beneficial. You can also do it at home with squishy balls, a cervical collar and more props. I am unabashedly promoting daily yoga. Just once a week isn’t enough. My yoga teacher made a pictograph list of postures for me. You are right. It is pretty wonderful. Be free of suffering today. Thanks for posting. Chris

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@artscaping

@margottaylor Good for you. Restorative is very beneficial. You can also do it at home with squishy balls, a cervical collar and more props. I am unabashedly promoting daily yoga. Just once a week isn’t enough. My yoga teacher made a pictograph list of postures for me. You are right. It is pretty wonderful. Be free of suffering today. Thanks for posting. Chris

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Oh yes home restorative yoga is my go-to with pain, especially Legs up the Wall on a heating pad.
There are wonderful online Free yoga sessions if anyone is interested.
Keep going Chris and other Yogis! Margot

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@jeanray

I am Jeanray…….Live in Florida. Diagnosed this week with peripheral neuropathy. It manifests mostly in my right leg, but also goes into the left leg and feet. I have had numbness in my goes and feet for some time. No indication of being diabetic. I do have some low back pain, I had a fall last summer and had a "bone bruise" on my right knee?? One thing that comes to mind is that I've had restless leg syndrome from time to time at night since I was in my 20's….I am 78. Doctor suggested Lyrica might lesson the symptons, has anyone had experience with that……

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@jeanray — I am tagging @notborntoburn, @elmay, @pfbacon who have talked about Lyrica in other posts to see if they might be able to share their experience with you.

Liked by Dee

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@grandmar

@johnbishop
Thank you, John!
I have been thinking about all sorts of activities.
My concern with yoga is my lack of core strength and my instability.
I suppose I can look on YouTube to find a program for people like me.
I have been getting into the pool.
I do all sorts of exercises.
I do the exercises I did in PT as well as swim laps, every other day.
I am also working on my stability in the pool.

Have a fantastic weekend!
Ronnie

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@grandmar If you're able to get on the floor, you can work on developing your core strength by doing a plank which is the simplest and most effective core strengthener there is. (Google for picture if you're not familiar with the plank)

Liked by Dee, grandmaR

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Thank you.

Liked by Dee

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@steeldove

@grandmar If you're able to get on the floor, you can work on developing your core strength by doing a plank which is the simplest and most effective core strengthener there is. (Google for picture if you're not familiar with the plank)

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Thank you!

Liked by Dee

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I just found out that my friend's elderly doggie is taking gabapentin – it was prescribed by his vet.

Liked by Dee

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@grandmar

Happy Friday!
I received my leg brace this week. There is certainly a difference with the way I walk. The front of my right foot lifts when I walk. I am hoping this will help with my falling.
On the other side, I feel the neuropathy in both feet getting worse. My right foot is the worse, but I am feeling that both sides are getting weaker.
Is this common? Do your legs, ankles and feet get weaker?
In addition, my right foot (the worse one) swells. Is this common, too?

Have a great day!
Ronnie (GRANDMAr)

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Hi @grandmar — Ronnie. My husband John has dealt with Sensory Periphery Neuropathy for 20 years. His neuropathy is due to a genetic disease — Charcot-Marie-Tooth disease (CMT). You can find more information on CMT at the following:
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/heredity-disorders/
https://www.cmtausa.org/understanding-cmt/what-is-cmt/
John's neuropathy does not cause pain; however, he has NO feeling below both knees — He broke a toe last December, and realized it only in the evening, when he took his socks off and saw half of his foot was red and swollen.
In spite of this severe case of neuropathy, John walks "normally", drives "normally", and has no problem on stairs. This is how he has managed to remain so capable: He wore athletic ankle weights for 12 years, every day. This allowed him to strengthen his leg muscles and "teach" other parts of the body to "feel" changes in movement and ground contour. In fact, when asked how is he capable to drive and walk, in spite of not having any feelings in his lower legs, John says he "feels movement with his knees".
Yes, he does have occasional problems and he wears compression socks to prevent swelling.
Hope this helps Ronnie! A hug …. –Dee

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@danielad

Hi @grandmar — Ronnie. My husband John has dealt with Sensory Periphery Neuropathy for 20 years. His neuropathy is due to a genetic disease — Charcot-Marie-Tooth disease (CMT). You can find more information on CMT at the following:
https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/heredity-disorders/
https://www.cmtausa.org/understanding-cmt/what-is-cmt/
John's neuropathy does not cause pain; however, he has NO feeling below both knees — He broke a toe last December, and realized it only in the evening, when he took his socks off and saw half of his foot was red and swollen.
In spite of this severe case of neuropathy, John walks "normally", drives "normally", and has no problem on stairs. This is how he has managed to remain so capable: He wore athletic ankle weights for 12 years, every day. This allowed him to strengthen his leg muscles and "teach" other parts of the body to "feel" changes in movement and ground contour. In fact, when asked how is he capable to drive and walk, in spite of not having any feelings in his lower legs, John says he "feels movement with his knees".
Yes, he does have occasional problems and he wears compression socks to prevent swelling.
Hope this helps Ronnie! A hug …. –Dee

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Thank you very much for the information!

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@grandmar

Thank you very much for the information!

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@grandmar — Ronnie, John has done very well, in spite of the progression of the neuropathy; you can too!
–Dee

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@danielad

@grandmar — Ronnie, John has done very well, in spite of the progression of the neuropathy; you can too!
–Dee

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Thank you cfg or those words of encouragement!
Ronnie

Liked by Dee

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Good Morning All!

Just wanted to fill you in on what has been going on.
I can't remember where I left off in this saga, so I will fill you in.
Since June, my toes have been feeling numb with limited movement in my right foot and no movement in my right big toe.
I saw my neurosurgeon and a neurologist.
Tests do show that I have significant nerve damage that impacts my spine, but shouldn't be causing all these other issues.
My surgeon suggested I see a vascular doctor that also specializes in the heart.
I already had 2 ultrasound tests done not too long ago.
At that time, the vascular doctor said that things we ok, just some aging issues.
My surgeon did not like that answer so he sent me to another vascular doctor.
This doctor got all my reports.
Apparently the other vascular doctor's tech did a good job with the test, but the doctor DIDN'T do such a good job reading the results or writing the report.
The new doctor said there are issues leading to the right and left leg.
Blood is not going to the heart but backing down into my legs.
This, he said MIGHT be the reason for some of the symptoms.
He is going to do an ablation on each leg (one at a time), this should help.
So, ablation it is.
It sounds different to the ones I've had done on my spine.
For those of you suffering with spinal issues, you might know what I am talking about, killing off the vein (in this instant instead of the nerve).

In addition, I've been seeing a pediatrist.
I now not only have neuropathy, but I also have a dropped foot (or toe), which causes me to trip if I am not aware of my walking.
My big toe 'catches' on the floor and I trip.
This is not good on so many levels, especially since I've had 2 spine surgeries!
Anyway, the doc suggested I get a leg brace.
So, leg brace it is!
This brace is made to help lift my toes when I walk.
It is working well!
I can walk longer when I use it, but my feet swell so much, that I need to get new sneakers.
I can just wear the brace 2-3 hours before my feet feel strangled!
But IT DOES HELP ME WALK FOR A MUCH LONGER PERIOD OF TIME WITHOUT TOO MUCH FATIGUE IN MY LEGS!!

Well, stay tuned for the continuing saga………..Ronnie and her ailments. What will happen next?????? (lol)

Have a terrific Friday!
Ronnie (GRANDMAr)

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I recently saw this informative article on Medical Marijuana on the Foundation for Peripheral Neuropathy's website. I thought it might be helpful for those members looking for more unbiased information.

Foundation for Peripheral Neuropathy – Medical Marijuana for Peripheral Neuropathy
https://www.foundationforpn.org/2019/05/14/medical-marijuana-for-peripheral-neuropathy/

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@johnbishop Thank you John for posting the link to this informative article from a trusted organization. It has been helpful for me. As we struggle to find relief from pain and discomfort, we are sometimes easy prey for those who promote unreliable and ineffective options. Take care of that knee. Chris

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@doneuro

has anyone had hernia repair surgery with neuropathy

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Hello @doneuro, you may want to post your question in the following discussion where more members with neuropathy will see it.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you scheduled to have hernia repair surgery?

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