Devastated by neuropathy

Posted by pakora @pakora, Jan 29, 2023

Any advice on how to deal with neuropathy caused by carelessness of a practitioner??

Interested in more discussions like this? Go to the Neuropathy Support Group.

@pamelaz

Do you have epilepsy?

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How bad is your neuropathy?

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@dbeshears1

I’ll say that I personally have not gained weight in the 6+ years I’ve been on Gabapentin. I’m thinking it’s possible I may have gained a few initially, but taking the Gapabentin coincided with my sudden crippling by PN and complete cessation of all the sports and exercises that were a big part of my life up til then. So my body was readjusting to a decrease in activity at the same time. Today I am 30 lbs lighter than I was 6 years ago, and I know it’s not because of Physical Therapy… pretty sure it shouldn’t be because of the Gabapentin. I think it’s just another example of how we all respond differently to meds, and how all of this is so convoluted with everything else in our medical histories and life styles. I do everything Kim mentioned above with things we can control, especially keeping the Gabapentin on a consistent schedule or else it takes time to regulate maximal comfort again.

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Is your neuropathy from your te all the way up through your buttocks? Just asking.

I feel like I have cactus through my toes all the way up through my buttocks.

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@pamelaz

Is your neuropathy from your te all the way up through your buttocks? Just asking.

I feel like I have cactus through my toes all the way up through my buttocks.

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I am fortunate to say that my PN has not progressed that far along up my leg.

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@dbeshears1

I’ll say that I personally have not gained weight in the 6+ years I’ve been on Gabapentin. I’m thinking it’s possible I may have gained a few initially, but taking the Gapabentin coincided with my sudden crippling by PN and complete cessation of all the sports and exercises that were a big part of my life up til then. So my body was readjusting to a decrease in activity at the same time. Today I am 30 lbs lighter than I was 6 years ago, and I know it’s not because of Physical Therapy… pretty sure it shouldn’t be because of the Gabapentin. I think it’s just another example of how we all respond differently to meds, and how all of this is so convoluted with everything else in our medical histories and life styles. I do everything Kim mentioned above with things we can control, especially keeping the Gabapentin on a consistent schedule or else it takes time to regulate maximal comfort again.

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Thank you!

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@pamelaz

Is your neuropathy from your te all the way up through your buttocks? Just asking.

I feel like I have cactus through my toes all the way up through my buttocks.

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Yes and I feel like I am walking on bubble wrap and both feet hurt. The pain is different in both my legs.

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@sullivantrish2

Pain, swelling in both legs and feet and I feel like I am walking on bubble wrap.

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I can relate. When I walk it’s like my feet are in control instead of me. I try my best to push through it.

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@sullivantrish2

Yes and I feel like I am walking on bubble wrap and both feet hurt. The pain is different in both my legs.

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Know you are not a lone.

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@pamelaz

Is your neuropathy from your te all the way up through your buttocks? Just asking.

I feel like I have cactus through my toes all the way up through my buttocks.

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Hello,
Yes mine is the same, soles of feet feel like I have small rocks or sand in my shoes.
Knees try to collapse especially when going down stairs. Unable to walk straight.
What a hell of a way to begin 2023.

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@wireman

Hello,
Yes mine is the same, soles of feet feel like I have small rocks or sand in my shoes.
Knees try to collapse especially when going down stairs. Unable to walk straight.
What a hell of a way to begin 2023.

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Welcome @wireman, It definitely is the pits and can take some learning how to deal with it efforts on our part.

Have you been diagnosed with neuropathy?

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@johnbishop

Welcome @wireman, It definitely is the pits and can take some learning how to deal with it efforts on our part.

Have you been diagnosed with neuropathy?

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Only by the ER and my Dr but they are sending me to a neurologist for a definite.

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