Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

I am one of the more fortunate ones with peripheral neuropathy. When it first started (years ago), we could find no cause. The Neurologist put me on Gabapentin, which I have been on ever since. It controls the burning and causes no side effects. I only have it in my lower legs and hands.

REPLY
@liz223

I am one of the more fortunate ones with peripheral neuropathy. When it first started (years ago), we could find no cause. The Neurologist put me on Gabapentin, which I have been on ever since. It controls the burning and causes no side effects. I only have it in my lower legs and hands.

Jump to this post

I take 1200 mgs of gabapentin everyday, b12 shots once a month, and 5 mgs of norco daily. Also 400 mgs of magnesium daily and a multivitamin. I want to try acupuncture but not sure.

REPLY
@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

Jump to this post

Just realizing that I have it…I drop things because I dont know I am hanging on to them. I also broke my wrist 2 years ago and had s minor stroke 20 years ago…have Dup..???contracture in one finger…a mess. anything else I should watch for?

REPLY
@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

Jump to this post

Hi @mattie, I have no medical background or training but I would want to know the cause or diagnosis of the neuropathy if possible. Mine was diagnosed as idiopathic small fiber peripheral neuropathy so wasn't much help other than to confirm that I have neuropathy – dead, dying or damaged nerves (my understanding of PN). A neurologist would probably setup an Electromyography (EMG) test to determine if you have nerve damage. Do you think it has anything to do with your Dupuytren's contracture in your hand? I was not familiar with the condition so I did find more information on Mayo's website here:

https://www.mayoclinic.org/diseases-conditions/dupuytrens-contracture/symptoms-causes/syc-20371943

Hopefully some others can offer some suggestions.

John

REPLY
@pkindron

Hi I was just diagnosed with peripheral Neuropathy. I don’t have an appointment with Neurogist until August 31st.

Jump to this post

John – happy to read your story – that's the first time I read it, and happy to know you are on the 'protocol'. I've been thinking of following that but wasn't sure. Not sure of the cause of my PN – my internist calls it diabetic neuropathy – probably because I am 'prediabetic' – (I told her if I could keep the A1c below 6 I wouldn't have to take medicine for diabetes – and she's agreeable to that). anyway, might order the supplements from Amazon today.

REPLY

@rabbit10, I've had peripheral neuropathy for at least 20 years. It's in my legs and my feet. My doctor has me on Gabapentin and Cymbalta, with the occasional ES Tylenol. My neurologist at the time said it was because I drank too much Scotch and Bourbon. I've been sober now for 8 years, but still have the neuropathy. Good luck. @cognac

REPLY

I have it 20yrs too. Mine is idiopathic, but I think its from drugs I was on that were never approved and have been taken off the market. Possible ceglor and ceftin also an antibiotic thats when mine started. Mine is also in my arms and its really hinting me hard the past 3yrs. Gabapentin made me worse!!!! BIG time!!!

REPLY
@sdemaria

I have it 20yrs too. Mine is idiopathic, but I think its from drugs I was on that were never approved and have been taken off the market. Possible ceglor and ceftin also an antibiotic thats when mine started. Mine is also in my arms and its really hinting me hard the past 3yrs. Gabapentin made me worse!!!! BIG time!!!

Jump to this post

Did you try Lyrica>

REPLY
@sdemaria

I have it 20yrs too. Mine is idiopathic, but I think its from drugs I was on that were never approved and have been taken off the market. Possible ceglor and ceftin also an antibiotic thats when mine started. Mine is also in my arms and its really hinting me hard the past 3yrs. Gabapentin made me worse!!!! BIG time!!!

Jump to this post

@bobbywood427, sure did. Had no effect whatsoever. @cognac

REPLY
@sdemaria

I have it 20yrs too. Mine is idiopathic, but I think its from drugs I was on that were never approved and have been taken off the market. Possible ceglor and ceftin also an antibiotic thats when mine started. Mine is also in my arms and its really hinting me hard the past 3yrs. Gabapentin made me worse!!!! BIG time!!!

Jump to this post

GM, yes I tried Lyrica. I can't take it, I had too many side effects from it.

REPLY

I have just completed a bout of shingles and have had PHN tor a few days now, starting at the scalp, migrating slowly to the temple (mostly right side) , then earlobes, starting eith upper, middle, lower. It is a shatp, electrifying pain, lasting from 5-55 seconds, repeating every few minutes. I have been prescribed Neurontin but it made me feel sick, after reading the prescription i realized it must be very powerful, it is an anti-epileptic, anti-seizure medication, i have decided to outwait the symptoms. In addition to the shingles-related pain, i have for many years had stinging/burning toes when hiking more than one hour, as well as numbness of the right toe, i was told it could be Morton’s neuroma. Does anyone know of any natural remedies? Frankly, i am afraid of Gabapentin! I worry it will play with my brain as it is an antiseizure med! Thank you! Elisabeth

REPLY
@elisabetha

I have just completed a bout of shingles and have had PHN tor a few days now, starting at the scalp, migrating slowly to the temple (mostly right side) , then earlobes, starting eith upper, middle, lower. It is a shatp, electrifying pain, lasting from 5-55 seconds, repeating every few minutes. I have been prescribed Neurontin but it made me feel sick, after reading the prescription i realized it must be very powerful, it is an anti-epileptic, anti-seizure medication, i have decided to outwait the symptoms. In addition to the shingles-related pain, i have for many years had stinging/burning toes when hiking more than one hour, as well as numbness of the right toe, i was told it could be Morton’s neuroma. Does anyone know of any natural remedies? Frankly, i am afraid of Gabapentin! I worry it will play with my brain as it is an antiseizure med! Thank you! Elisabeth

Jump to this post

Hi @elisabetha — Mayo Clinic has some home treatments listed on their website here:
https://www.mayoclinic.org/diseases-conditions/mortons-neuroma/diagnosis-treatment/drc-20351939

REPLY
@elisabetha

I have just completed a bout of shingles and have had PHN tor a few days now, starting at the scalp, migrating slowly to the temple (mostly right side) , then earlobes, starting eith upper, middle, lower. It is a shatp, electrifying pain, lasting from 5-55 seconds, repeating every few minutes. I have been prescribed Neurontin but it made me feel sick, after reading the prescription i realized it must be very powerful, it is an anti-epileptic, anti-seizure medication, i have decided to outwait the symptoms. In addition to the shingles-related pain, i have for many years had stinging/burning toes when hiking more than one hour, as well as numbness of the right toe, i was told it could be Morton’s neuroma. Does anyone know of any natural remedies? Frankly, i am afraid of Gabapentin! I worry it will play with my brain as it is an antiseizure med! Thank you! Elisabeth

Jump to this post

I am on gabapentin and that I can tell do not have any serious side effects but everyone reacts differently to a drug. That being said I still get bouts of the tremors especially in my left hand (I am right handed ) that is annoying but the sudden jerks are more worrisome. Makes anything taking finer motor skills impossible, like texting etc.

REPLY

Elisabetha, have you actually been seen and diagnosed with Morton’s Nueroma? I was also told my foot symptoms, (burning, pain, numbness) could be Morton’s Nueroma. After consulting with surgeons at Mayo they said no. They said I had metatarsalgia. They advised me on shoes and metatarsal pads for all my shoes and sandals. As long as I am wearing these I have no problems with my feet. I absolutely can’t go barefoot at all without problems popping up.

REPLY
@bonnieh218

Elisabetha, have you actually been seen and diagnosed with Morton’s Nueroma? I was also told my foot symptoms, (burning, pain, numbness) could be Morton’s Nueroma. After consulting with surgeons at Mayo they said no. They said I had metatarsalgia. They advised me on shoes and metatarsal pads for all my shoes and sandals. As long as I am wearing these I have no problems with my feet. I absolutely can’t go barefoot at all without problems popping up.

Jump to this post

Wow. Sounds like you may have found what some of us have been searching for for years. At the risk of bring too intrusive would you mind sharing with me as much detail as you can about the shoes and metatarsal pads? Just maybe, I can use this data to rteplicate your experience.
Arny

REPLY
Please login or register to post a reply.