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oceanfun1
@oceanfun1

Posts: 16
Joined: Jan 22, 2016

I had a TBI 8 years ago. Since I've developed neuropathy, fibromyalgia and migraines

Posted by @oceanfun1, Jan 21, 2016

I had a TBI 8 years ago. Since then I have developed neuropathy, fibromyalgia and now most recently migraines. I have had a fall since my initial injury which I think was caused by the neuropathy as I have had huge issues with balance. Doctors asked me why I have balance issues but no one could make the connection. , I discovered I was not using my toes to walk or balance my body. I have seen a string of neurologists I have been told there is so much we don’t know about the brain. My level of brain function can decrease for no apparent reason and then return.
I have read recently about brain plasticity. It seem interesting as a treatment approach. Does anyone have any experience with that treatment approach. I have considered coming to Mayo but I do not have the support system needed to make the trip.

REPLY

Hi @oceanfun1
Welcome to Connect. The brain is indeed a fascinating and challenging organ. Mayo Clinic has led research in neuroplasticity

The concept, called neuroplasticity, means that although we can’t make new nerve cells in our brains, we can make new…

Posted by Mayo Clinic on Tuesday, January 28, 2014

I’m tagging another Connect member @coleleeo here to see if she might have anything to share with you.

Interesting the you discovered that you were not using you toes to walk or balance. I’m curious were you able to retrain your brain to start using them?

Colleen
Connect Community Director

@colleenyoung

Hi @oceanfun1
Welcome to Connect. The brain is indeed a fascinating and challenging organ. Mayo Clinic has led research in neuroplasticity

The concept, called neuroplasticity, means that although we can’t make new nerve cells in our brains, we can make new…

Posted by Mayo Clinic on Tuesday, January 28, 2014

I’m tagging another Connect member @coleleeo here to see if she might have anything to share with you.

Interesting the you discovered that you were not using you toes to walk or balance. I’m curious were you able to retrain your brain to start using them?

Colleen
Connect Community Director

Jump to this post

My biggest issue with using my toes again. was pain as it directly
connected to the neuropathy. Not using my toes was a real awakening. I
was desperate to figure out why I was falling a lot and not feeling stable.
Falling was creating additional injuries. I told many doctors who wanted
to figure out how to get the falling stopped that I felt my body was
leaning forward from the waist but they could not seem to figure out the
cause. . Once a PT told me I was doing it I practiced using the toes. It
did take time to get my toes back in action. I practiced of course on a
flat surface. I used deep breathing and at times a painkiller to get
through my pain. My feet burned, tingled and hurt at night. I used my
fingers to expand the space between my toes to create a wider base. It hurt
a great deal to begin using them.
A lot of this was done intuitively. As far as any recruiting my brain I am
sure I did but it was not a conscious effort. Now that you mention yes of
course I did with a tremendous amount of effort. I do not think not using
my toes was a result of my brain injury. It was a result of the neuropathy
that followed two years after injury
Thanks for you interest.
Any ideas or perspective you could give me would be great.
I do not have facebook. Is there a way to access this information without
facebook.
Sue

@colleenyoung

Hi @oceanfun1
Welcome to Connect. The brain is indeed a fascinating and challenging organ. Mayo Clinic has led research in neuroplasticity

The concept, called neuroplasticity, means that although we can’t make new nerve cells in our brains, we can make new…

Posted by Mayo Clinic on Tuesday, January 28, 2014

I’m tagging another Connect member @coleleeo here to see if she might have anything to share with you.

Interesting the you discovered that you were not using you toes to walk or balance. I’m curious were you able to retrain your brain to start using them?

Colleen
Connect Community Director

Jump to this post

Wow. That must have taken a tremendous amount of effort. Are you falling less now and able to use your toes with less effort.

I’m tagging @Tbato622 who also has neuropathy.

@colleenyoung

Hi @oceanfun1
Welcome to Connect. The brain is indeed a fascinating and challenging organ. Mayo Clinic has led research in neuroplasticity

The concept, called neuroplasticity, means that although we can’t make new nerve cells in our brains, we can make new…

Posted by Mayo Clinic on Tuesday, January 28, 2014

I’m tagging another Connect member @coleleeo here to see if she might have anything to share with you.

Interesting the you discovered that you were not using you toes to walk or balance. I’m curious were you able to retrain your brain to start using them?

Colleen
Connect Community Director

Jump to this post

I have my balance back which is amazing. I have not fallen since. I am now
going to have to do more work programming my body. Since you have drawn my
attention to it my toes are curling up again and hurting which my guess is
that is a sign my body as regressed.. It will be more painful to get them
in full function again but well worth it. Thanks for helping me to see
that.
Sue

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