1. < Neuropathy

Is it worth trying to resolve peripheral neuropathy?

Posted by darrenm @darrenm, Jul 31, 2020

G'day,

I'm 53 yo bloke and suffer from peripheral neuropathy. I get these sharp burning/stinging pains (like bee stings) that usually start in my hands and feet and then spread to my lower torso. Usually starts first thing in the morning and maybe flare-up 3-5 times over the first few hours of the day with then just occasional atacks later in the day. The pain is usally quite severe and last for 2-3 minutes in duration where I usually rush to the nearest tap and use cold water to try and soothe the pain.

It all began randomly 4 years ago, lasted for about 3-5 months then disappeared for 6 months, came again for a similar period of time except the pain got worse. It came back in a mild form a year or so ago but again disappeared. It has just started again last week and it is worse than ever. Shooting, searing pain in hands feet, and lower back and stomach. I believe I have a high pain threshold, but the pain is is pretty bad and makes me reluctant to leave home to avoid a public episode.

I have seen doctors and a neurologist without a definitive diagnosis though SFN was first assumed. I have been prescribed, Endep, Lyrica and Andrepera all with no success, made literally zero difference even after months of use. I am arranging to see the neurologist again, but wondering what the point is given it's primarily about pain management and I already know that but none of it has worked in the past. Apologies if I sound negative or entitled, just frustrated.

Cheers Darren

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Hank | @jesfactsmon | Aug 3, 2020
In reply to @darrenm "Thanks all, Went to the docs today, and he has ordered more blood tests as well..." + (show)
@darrenm

Thanks all,

Went to the docs today, and he has ordered more blood tests as well as a return visit to my old neurologist (and asked me to take Lyrica again for a month). Yes, everyone else seems to describe more permanent pain not of my type which is extreme for minutes then dissipates. Regarding cause, I had a decent motorcycle accident some years ago, but I'm not convinced there is a correlation as I had an time of episodes before that, and I did just get out of the hospital a few weeks back from shoulder surgery (related to the bike accident 3 years ago) and the neuropathy started a few days after that, but that might be a coincidence. Anyway, you have all given me food for thought and I get back to you when things move forward. Thanks for taking the time to offer guidance and comment, much appreciated.

Cheers, Darren.

Jump to this post

@darrenm I concur with @user_che214927 Barry's opinion to seek a different neurologist. I think doctors are not all the same and it's good to get a fresh opinion. I also don't understand your doctor's reasoning for going back on Lyrica for a month since you already saw no benefit from it before. What was his reasoning? Finally, I would really suggest you look into any new ways of determining that you truly have sfpn because of the unusual way your pain manifests. There is the skin punch biopsy option. Here is an interesting article about that:
https://www.hopkinsmedicine.org/news/articles/delivering-a-one-two-punch-for-peripheral-neuropathies
At the risk of getting a little too arcane, there is also something that @rwinney has mentioned called confocal microscopy which supposedly can tell you whether you have sfpn. The equipment is not common, mostly at research centers and universities. I mention it just for the sake of completeness. Okay, that's it for my thoughts of the day Darren. I mainly wanted to add my second to Barry's suggestion about thinking about trying a new neurology doctor.

Good luck my friend. Hank

REPLY
1 reply
lorirenee1 | @lorirenee1 | Aug 3, 2020
In reply to @darrenm "Thanks all, Went to the docs today, and he has ordered more blood tests as well..." + (show)
@darrenm

Thanks all,

Went to the docs today, and he has ordered more blood tests as well as a return visit to my old neurologist (and asked me to take Lyrica again for a month). Yes, everyone else seems to describe more permanent pain not of my type which is extreme for minutes then dissipates. Regarding cause, I had a decent motorcycle accident some years ago, but I'm not convinced there is a correlation as I had an time of episodes before that, and I did just get out of the hospital a few weeks back from shoulder surgery (related to the bike accident 3 years ago) and the neuropathy started a few days after that, but that might be a coincidence. Anyway, you have all given me food for thought and I get back to you when things move forward. Thanks for taking the time to offer guidance and comment, much appreciated.

Cheers, Darren.

Jump to this post

Darren, Best of luck to you. Neuropathy often happens after surgery as the body goes into fight mode, and you may have had an auto immune response to surgery, or some kind of nerve damage from it. Regardless, keep finding answers if you can. Lori Renee

REPLY
lorirenee1 | @lorirenee1 | Aug 3, 2020
In reply to @rwinney "@johnbishop You're welcome! Hope to bring some peace to all." + (show)
@rwinney

@johnbishop You're welcome! Hope to bring some peace to all.

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@rwinney Ms. Rachel, Your adventure freaked me out!!!! My goodness, girl!!!! YOU ROCK!!!!! I am just so proud of you and happy that you got to enjoy yourself! OH MY GOODNESS! Thanks for your splendid pictures, too. Stunning. My blessings and love, Lori

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darrenm | @darrenm | Aug 3, 2020
In reply to @user_che214927 "Darren, I can't believe what I am reading. Peripheral-neuropathy can now be reversed by practice of..." + (show)
@user_che214927

Darren, I can't believe what I am reading. Peripheral-neuropathy can now be reversed by practice of Neuroplasticity. A comprehensiive test by a good neurologist , will definately diagnose your condition . Don't go back to your old neurologist, research and meet with a top neurologist. Luckily you live in America. I would head straight to the Mayo hospital team. If it is established that you really do have peripheral-neuropathy, you have two choices to consider. Do nothing and suffer in silence, or overcome it totally by practicing Neuroplasticity. Like most tough times, the decision is yours.There are 2 books you should read. Details of both are in my previous posts. Recovery will require discipline and mental perseverance, but, you are still a young man, with the world at your. Just go for it

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Thanks Barry,

I live in regional Victoria, Australia and I don't have a lot of options, the neuro I am with is the top neuro for my area and teaches at the University also. additionally, we are under COVID lockdown with evening curfews and limited medical access. and even travel restrictions.
I will certainly have a look at those books, and I am trying to do as much reading as I can. Thanks for your kind reply and encouragement.

REPLY
1 reply
darrenm | @darrenm | Aug 3, 2020
In reply to @jesfactsmon "@darrenm I concur with @user_che214927 Barry's opinion to seek a different neurologist. I think doctors are..." + (show)
@jesfactsmon

@darrenm I concur with @user_che214927 Barry's opinion to seek a different neurologist. I think doctors are not all the same and it's good to get a fresh opinion. I also don't understand your doctor's reasoning for going back on Lyrica for a month since you already saw no benefit from it before. What was his reasoning? Finally, I would really suggest you look into any new ways of determining that you truly have sfpn because of the unusual way your pain manifests. There is the skin punch biopsy option. Here is an interesting article about that:
https://www.hopkinsmedicine.org/news/articles/delivering-a-one-two-punch-for-peripheral-neuropathies
At the risk of getting a little too arcane, there is also something that @rwinney has mentioned called confocal microscopy which supposedly can tell you whether you have sfpn. The equipment is not common, mostly at research centers and universities. I mention it just for the sake of completeness. Okay, that's it for my thoughts of the day Darren. I mainly wanted to add my second to Barry's suggestion about thinking about trying a new neurology doctor.

Good luck my friend. Hank

Jump to this post

Thanks Hank,

I will certainly ask for skin punch biopsy and he will no doubt want to do another electrical test... will report back with any news. Again, thanks for all your support, researching and knowledge sharing is really helpful, gives me hope. Blessings Darren

REPLY
Barry Sheales | @user_che214927 | Aug 4, 2020
In reply to @darrenm "Thanks Barry, I live in regional Victoria, Australia and I don't have a lot of options,..." + (show)
@darrenm

Thanks Barry,

I live in regional Victoria, Australia and I don't have a lot of options, the neuro I am with is the top neuro for my area and teaches at the University also. additionally, we are under COVID lockdown with evening curfews and limited medical access. and even travel restrictions.
I will certainly have a look at those books, and I am trying to do as much reading as I can. Thanks for your kind reply and encouragement.

Jump to this post

That's great mate. What part of Victoria.You are a lucky man as I have researched and know the right people in Vic, especially the neurologists.I am on both Facebook or Instagram. I believe we can work on this together. Incidently I live in Sunbury

REPLY
3 replies
Hank | @jesfactsmon | Aug 4, 2020
In reply to @user_che214927 "That's great mate. What part of Victoria.You are a lucky man as I have researched and..." + (show)
@user_che214927

That's great mate. What part of Victoria.You are a lucky man as I have researched and know the right people in Vic, especially the neurologists.I am on both Facebook or Instagram. I believe we can work on this together. Incidently I live in Sunbury

Jump to this post

@user_che214927 @darrenm Barry and Darren, so it looks like you two guys live fairly close to each other? What an amazing coincidence (not that I believe in coincidence per se). I'm very glad to know this. I hope you can help each other. My very best to you both, Hank

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 4, 2020
In reply to @user_che214927 "That's great mate. What part of Victoria.You are a lucky man as I have researched and..." + (show)
@user_che214927

That's great mate. What part of Victoria.You are a lucky man as I have researched and know the right people in Vic, especially the neurologists.I am on both Facebook or Instagram. I believe we can work on this together. Incidently I live in Sunbury

Jump to this post

Hi Barry @user_che214927, You will notice I removed your phone number from your post to protect your privacy. If you would like to share your contact information with @darrenm or any other member you can use the Private Message function of Connect. This and other tasks are listed in the Get Started on Connect guide that you open by clicking the link in the left footer column at the bottom of any Connect page.

How to Send a Private Message: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

REPLY
1 reply
Hank | @jesfactsmon | Aug 4, 2020
In reply to @johnbishop "Hi Barry @user_che214927, You will notice I removed your phone number from your post to protect..." + (show)
@johnbishop

Hi Barry @user_che214927, You will notice I removed your phone number from your post to protect your privacy. If you would like to share your contact information with @darrenm or any other member you can use the Private Message function of Connect. This and other tasks are listed in the Get Started on Connect guide that you open by clicking the link in the left footer column at the bottom of any Connect page.

How to Send a Private Message: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

Jump to this post

@johnbishop You are a good man John. Great catch!

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 4, 2020
In reply to @jesfactsmon "@johnbishop You are a good man John. Great catch!" + (show)
@jesfactsmon

@johnbishop You are a good man John. Great catch!

Jump to this post

Thanks Hank @jesfactsmon - I tagged Barry @user_che214927 in my post to welcome @darrenm when I noticed that he was also from Australia. Just had a feeling that it helps to know you are not the only one from "Down Under" that and I was really ticked that I never made it to Australia while I was in the Navy. The ship I was on stopped in Australia in 1967, a year after I was discharged. Anyone remember Down Under by Men at Work?: https://www.youtube.com/watch?v=XfR9iY5y94s

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