Is it worth trying to resolve peripheral neuropathy?

Posted by darrenm @darrenm, Jul 31 12:05am

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

Hi Darren, welcome to Connect. You are definitely not alone in your issue of what sounds to me like a case of peripheral neuropathy. There are tests many people have done, such as a nerve conduction test or skin punch biopsy which you could ask your doc about. My wife had her PN start during chemotherapy in 2014 and she has had burning in both feet. She was not diagnosed but it was pretty clear it was PN. She has progressed from a fairly mild case that used to start in the early evening to now having it start as soon as she wakes up and lasts all day. You might find that yours progresses as well. It seems to for many people. She does not believe drugs are an answer, for her at least, but she did give gabapentin (neurontin) a try. It did not help her although for others it's a mixed bag with some getting no benefit, like my wife, and some swearing by it as their savior. Opioids seem to not help most people with PN. One person who is a mentor here, @jimhd Jim, relies on morphine to get him through the worst of his pain. Several people who post here have had nerve stimulators installed in their bodies, and these have helped a lot in some cases, not so much in others. Like everything neuropathy based, every case plays out differently. Some who have tried stimulators are, again, Jim, as well as Barb @barbbie both of whom have had a spinal cord stimulator installed, Lori @lorirenee1 who recently got a dorsal root ganglion (DRG) stimulator and Fred @fredjan2016 who has had a neuro stimulator inserted into his feet/ankles. These stimulators seem to be the latest thing that many people are trying these day to deal with their pain. Anyway, I have given you a little of what I know about this horrible condition and how people deal with it. I am sure you will find lots of people to discuss this with on Mayo Connect. I just happen to be the first to reply to you. It's the middle of the night here in the USA and I get up very early. Good luck to you Darren, please stay in touch with this group, hey are a great bunch of people and super helpful! Best, Hank

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@darrenm Hi there, Darren! I am Lori, and I have severe neuropathy in my feet. I have messaged you privately. If you have never received a private message, you will see a little envelope in the top right corner of the page, next to your picture. Click on it, to get my message. Lori

Liked by swift, HankB

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@jesfactsmon

Hi Darren, welcome to Connect. You are definitely not alone in your issue of what sounds to me like a case of peripheral neuropathy. There are tests many people have done, such as a nerve conduction test or skin punch biopsy which you could ask your doc about. My wife had her PN start during chemotherapy in 2014 and she has had burning in both feet. She was not diagnosed but it was pretty clear it was PN. She has progressed from a fairly mild case that used to start in the early evening to now having it start as soon as she wakes up and lasts all day. You might find that yours progresses as well. It seems to for many people. She does not believe drugs are an answer, for her at least, but she did give gabapentin (neurontin) a try. It did not help her although for others it's a mixed bag with some getting no benefit, like my wife, and some swearing by it as their savior. Opioids seem to not help most people with PN. One person who is a mentor here, @jimhd Jim, relies on morphine to get him through the worst of his pain. Several people who post here have had nerve stimulators installed in their bodies, and these have helped a lot in some cases, not so much in others. Like everything neuropathy based, every case plays out differently. Some who have tried stimulators are, again, Jim, as well as Barb @barbbie both of whom have had a spinal cord stimulator installed, Lori @lorirenee1 who recently got a dorsal root ganglion (DRG) stimulator and Fred @fredjan2016 who has had a neuro stimulator inserted into his feet/ankles. These stimulators seem to be the latest thing that many people are trying these day to deal with their pain. Anyway, I have given you a little of what I know about this horrible condition and how people deal with it. I am sure you will find lots of people to discuss this with on Mayo Connect. I just happen to be the first to reply to you. It's the middle of the night here in the USA and I get up very early. Good luck to you Darren, please stay in touch with this group, hey are a great bunch of people and super helpful! Best, Hank

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G'day Hank, thanks for taking the time to respond so comprehensively.
I gather that most people have constant pain, whereas, I have quite severe episodes starting from 5:30 am (when I get up) and are usually much more frequent in the morning and then lesser throughout the day. So I may have 12 or so episodes punctuating my day with most of those in the morning. The duration is usually brief, 3 or so minutes, but very intense. Is that common?

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@darrenm

G'day Hank, thanks for taking the time to respond so comprehensively.
I gather that most people have constant pain, whereas, I have quite severe episodes starting from 5:30 am (when I get up) and are usually much more frequent in the morning and then lesser throughout the day. So I may have 12 or so episodes punctuating my day with most of those in the morning. The duration is usually brief, 3 or so minutes, but very intense. Is that common?

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Well Darren, I'd say the best way to answer your question is that pretty much no two people have exactly the same experience with peripheral neuropathy. And what you describe might be common to some people early on in the disease, I don't know. But from the descriptions I have read here on Connect I would say many who have long term cases of PN have pain all or most of the day. As I mentioned, my wife started having it in the evening and eventually progressed to having severe pain as soon as she gets up in the morning and it lasts until she goes to bed. I hope that is not where your problem ends up. As annoying as your case sounds at least it is limited to those periods of limited duration. I am postulating that your case will progress as well based on what I hear from others, but I hope that is not the case for you. Two things I did not mention in the first post was that there are two things which help some with their pain and those are cannabis and kratom. My wife smokes marijuana 2-3 times per week and it gives her some respite from her pain for several hours each time. She has not had the same luck with kratom, but Lori @lorirenee1 who posted earlier here swears by it. You know, because of the way your problem manifests, if I were you I think I would talk to my doctor about being tested for PN because maybe what you have is slightly different. It would be good to have a firm diagnoses I would think. Anyway, hope you can get it figured out Darren, it sounds like not too much fun. Best, Hank

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Hello Darren @darrenm, I would like to add my welcome to Connect along with @jesfactsmon @lorirenee1 @user_che214927 @rwinney and other members. Here are some other discussion on Connect you may find helpful…

Electrical shocks throughout my body: https://connect.mayoclinic.org/discussion/electrical-shocks-throughout-my-body/
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/
Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/

As @jesfactsmon mentioned each of us are different. I noticed the numbness starting in my toes in my late 40s and waited 20+ years before seeking a diagnosis. I too was pondering is it worth it after being told early on by my doctors they can do testing to prove it's nerve damage but when I asked if they determine it's nerve damage, what can be done. When told not much, I shrugged it off for over 20 years until the numbness was just below my knees and I just needed to know the cause even if there was no treatment for the numbness. In retrospect, I'm happy I had the tests and met with a neurologist even though I had to do my own research to find something that will help my symptoms. That search led me to Connect and this great support group of other patients also looking for answers. Sharing our experiences with each other has been helpful for me and hopefully will help you find something that works for you.

Darren, you mentioned seeing doctors and a neurologist but they only assumed small fiber neuropathy. Did they do a nerve conduction study or a skin punch biopsy?

REPLY
@johnbishop

Hello Darren @darrenm, I would like to add my welcome to Connect along with @jesfactsmon @lorirenee1 @user_che214927 @rwinney and other members. Here are some other discussion on Connect you may find helpful…

Electrical shocks throughout my body: https://connect.mayoclinic.org/discussion/electrical-shocks-throughout-my-body/
Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
Ideas for pain relief from Small Fiber Neuropathy (SFN): https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/
Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/

As @jesfactsmon mentioned each of us are different. I noticed the numbness starting in my toes in my late 40s and waited 20+ years before seeking a diagnosis. I too was pondering is it worth it after being told early on by my doctors they can do testing to prove it's nerve damage but when I asked if they determine it's nerve damage, what can be done. When told not much, I shrugged it off for over 20 years until the numbness was just below my knees and I just needed to know the cause even if there was no treatment for the numbness. In retrospect, I'm happy I had the tests and met with a neurologist even though I had to do my own research to find something that will help my symptoms. That search led me to Connect and this great support group of other patients also looking for answers. Sharing our experiences with each other has been helpful for me and hopefully will help you find something that works for you.

Darren, you mentioned seeing doctors and a neurologist but they only assumed small fiber neuropathy. Did they do a nerve conduction study or a skin punch biopsy?

Jump to this post

Did several nerve conduction tests and they seemed ok. I was supposed to get a biopsy after meeting with another neurologist but I didn't end up getting it as my symptoms went away for the last years or two… but now they are back worse than ever.
I couldn't imagine having this pain constantly, my 3 min episodes literally leave me writhing in agony when they are at their worst, then they just disappear either for 15 minutes or 5 hours!

Kratom isn't available in Australia and medical marijuana and I have used with no effect all the major drugs at high doses. I will keep reading and will see another neurologist. Thanks for this help and resource.

REPLY
@jesfactsmon

Well Darren, I'd say the best way to answer your question is that pretty much no two people have exactly the same experience with peripheral neuropathy. And what you describe might be common to some people early on in the disease, I don't know. But from the descriptions I have read here on Connect I would say many who have long term cases of PN have pain all or most of the day. As I mentioned, my wife started having it in the evening and eventually progressed to having severe pain as soon as she gets up in the morning and it lasts until she goes to bed. I hope that is not where your problem ends up. As annoying as your case sounds at least it is limited to those periods of limited duration. I am postulating that your case will progress as well based on what I hear from others, but I hope that is not the case for you. Two things I did not mention in the first post was that there are two things which help some with their pain and those are cannabis and kratom. My wife smokes marijuana 2-3 times per week and it gives her some respite from her pain for several hours each time. She has not had the same luck with kratom, but Lori @lorirenee1 who posted earlier here swears by it. You know, because of the way your problem manifests, if I were you I think I would talk to my doctor about being tested for PN because maybe what you have is slightly different. It would be good to have a firm diagnoses I would think. Anyway, hope you can get it figured out Darren, it sounds like not too much fun. Best, Hank

Jump to this post

Thanks, Hank, much appreciated.

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@darrenm

Did several nerve conduction tests and they seemed ok. I was supposed to get a biopsy after meeting with another neurologist but I didn't end up getting it as my symptoms went away for the last years or two… but now they are back worse than ever.
I couldn't imagine having this pain constantly, my 3 min episodes literally leave me writhing in agony when they are at their worst, then they just disappear either for 15 minutes or 5 hours!

Kratom isn't available in Australia and medical marijuana and I have used with no effect all the major drugs at high doses. I will keep reading and will see another neurologist. Thanks for this help and resource.

Jump to this post

Wow, that is surprising to me that medical marijuana is not effective for you. I thought (obviously mistakenly) that most people got at least some pain relief from it. Perhaps because your type of pain is so sharp and sudden the marijuana does not affect it. I'd keep it in mind for later though if your pain ever becomes less sharp and sudden and more of consistent burning. It might be effective for that. But I hope for your sake that it just subsides altogether and goes away completely. So you did have nerve conduction tests done and you say "they seemed okay"? So they did not indicate neuropathy? Maybe you have some other issue besides neuropathy. That might be a hopeful sign as having neuropathy seems to be a one way street for most people, it being a progressive disease in most cases. Do you any idea what may have triggered this condition? The causes of neuropathy vary, diabetes, chemotherapy, an accident, a surgical procedure, even a b12 deficiency, and many people have nothing in their history to explain it and are labeled idiopathic. Do you have any other conditions that might be related somehow? It's just that the way it manifests, sudden pain that last a few minutes a few times a day and then is gone, and it lasts a few months and goes away only to come back later, does not sound like the descriptions I am familiar with for most people's cases of neuropathy. My hope for you is that it is something else and that it will go away completely at some point. In any case, hope you find some answers Darren, and hopefully they are welcome ones. My best to you, Hank

REPLY
@jesfactsmon

Wow, that is surprising to me that medical marijuana is not effective for you. I thought (obviously mistakenly) that most people got at least some pain relief from it. Perhaps because your type of pain is so sharp and sudden the marijuana does not affect it. I'd keep it in mind for later though if your pain ever becomes less sharp and sudden and more of consistent burning. It might be effective for that. But I hope for your sake that it just subsides altogether and goes away completely. So you did have nerve conduction tests done and you say "they seemed okay"? So they did not indicate neuropathy? Maybe you have some other issue besides neuropathy. That might be a hopeful sign as having neuropathy seems to be a one way street for most people, it being a progressive disease in most cases. Do you any idea what may have triggered this condition? The causes of neuropathy vary, diabetes, chemotherapy, an accident, a surgical procedure, even a b12 deficiency, and many people have nothing in their history to explain it and are labeled idiopathic. Do you have any other conditions that might be related somehow? It's just that the way it manifests, sudden pain that last a few minutes a few times a day and then is gone, and it lasts a few months and goes away only to come back later, does not sound like the descriptions I am familiar with for most people's cases of neuropathy. My hope for you is that it is something else and that it will go away completely at some point. In any case, hope you find some answers Darren, and hopefully they are welcome ones. My best to you, Hank

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@darrenm @jesfactsmon Hi Hank and Darren! Darren, I just read Hank's post to you, and he is so right in the fact that your description of how your pain is, is not typical of Neuropathy, at all! It does not disappear for a year and come back, as far as I know. I do suggest you get second and third opinions as to what you might have. I suggest a neuro doc, and even your general primary doc to do a total battery of blood work to start. You do need investigation!!!!! Love to you guys, Lori

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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.

REPLY
@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.

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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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@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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@user_che214927 Hi Barry (and all my Connect friends too 🙂). I love that you are such a firm believer in neuroplasticity! I'd like to share with you that I'm trying hard to practice this theory and this past weekend was benefited by it while away at the lake for a small redirection of life. I ACTUALLY went on a 2 mile trail hike with my husband!!! I was (and still am) dumbfounded by my accomplishment. My family was astonished and so proud. It felt incredibly liberating. I continue to scratch my head at to how I did it. But, here's what I crack it up to…I went slow, with frequent rests. Both on a bench and standing still, bending over. I used a lot of brain power by talking myself through, mentally arguing with the feelings and sensations I felt in my body and dismissing them. I had focus, which is key, and incredible distraction. Nature is healing and I know that. My first day at the cabin was one where I sat back and said goodbye as my husband and daughter went off to explore the trails. Day two, I was determined to make it happen for myself. Pain medicine is just one aspect of what helped me but, I'm most proud to have had the push, the desire. I've read that traveling creates new neurons and aids in neuroplasticity, in addition to learning a new language, eating and using your opposite hand, learning to play an instrument, driving new routes. Barry ~ I hope you are well and wish to thank you for being a little voice in my head when it comes to retraining the brain. You're the best! May you reach your goals of riding your bike outside of your house! 💪🏼💪🏼💪🏼
Best wishes,
Rachel

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@rwinney

@user_che214927 Hi Barry (and all my Connect friends too 🙂). I love that you are such a firm believer in neuroplasticity! I'd like to share with you that I'm trying hard to practice this theory and this past weekend was benefited by it while away at the lake for a small redirection of life. I ACTUALLY went on a 2 mile trail hike with my husband!!! I was (and still am) dumbfounded by my accomplishment. My family was astonished and so proud. It felt incredibly liberating. I continue to scratch my head at to how I did it. But, here's what I crack it up to…I went slow, with frequent rests. Both on a bench and standing still, bending over. I used a lot of brain power by talking myself through, mentally arguing with the feelings and sensations I felt in my body and dismissing them. I had focus, which is key, and incredible distraction. Nature is healing and I know that. My first day at the cabin was one where I sat back and said goodbye as my husband and daughter went off to explore the trails. Day two, I was determined to make it happen for myself. Pain medicine is just one aspect of what helped me but, I'm most proud to have had the push, the desire. I've read that traveling creates new neurons and aids in neuroplasticity, in addition to learning a new language, eating and using your opposite hand, learning to play an instrument, driving new routes. Barry ~ I hope you are well and wish to thank you for being a little voice in my head when it comes to retraining the brain. You're the best! May you reach your goals of riding your bike outside of your house! 💪🏼💪🏼💪🏼
Best wishes,
Rachel

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Hi Rachel . Have you read both of Norman Doige's books. Details of them is in my previous posts. Physical exercise is great for our general health, because , in my case, I am totally physically fit. Lots of people try to convine me that exercis will fix my disobedient feet. I am sick of explaining I have a nerve problem online. You sound like aa very

Liked by lorirenee1, rwinney

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@rwinney

Here is a sampling.

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Thanks for sharing these photos with us Rachel @rwinney – so calm and serene!

Liked by lorirenee1, rwinney

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