Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.

— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?

Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?

What’s your neuropathy story?

Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.

@resawaller

Hi,my name is resa and in 54 yrs old. I have always been really healthy and i work a full time job.i hurt my shoulder at work and figured it was just a pulled muscle. A week later my fingers started going numb,and then my hand. FIRST neurologist, after a mri,sent me to a specialist, and he said herniated disc, 2nd neurogist said Chiari malformation and wanted to cut my head open.that freaked me out.and I got a 3rd opinion. And he wants to cut my back open! Now the nerve pain is from my waist up on my left side,all the way down my arm! Numb,burning, sticking,stabbing,pain from hell! My husband don t get how bad it is,and I still havet to work everyday in a glass factory, useing my hands! 40 hrs a week! By the time I get home, I want to die! Lyrica helps some,but it never goes away! But people don't get it cause they can't see it! I don't know what to do! I'm scared of surgery. Any advice out there?? Sorry so long!

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Hi Resa, my first thought is, unless you have a clear diagnosis by at least two doctors that you trust including a surgeon that you trust implicitly, I'd go slow on agreeing to surgery. Surgery must always be the last resort as there are big risks to surgery itself as you sound like you already know. I'm sure someone here on Connect can steer you into some other things to try or look into before going the surgery route. Best, Hank

REPLY
@resawaller

Hi,my name is resa and in 54 yrs old. I have always been really healthy and i work a full time job.i hurt my shoulder at work and figured it was just a pulled muscle. A week later my fingers started going numb,and then my hand. FIRST neurologist, after a mri,sent me to a specialist, and he said herniated disc, 2nd neurogist said Chiari malformation and wanted to cut my head open.that freaked me out.and I got a 3rd opinion. And he wants to cut my back open! Now the nerve pain is from my waist up on my left side,all the way down my arm! Numb,burning, sticking,stabbing,pain from hell! My husband don t get how bad it is,and I still havet to work everyday in a glass factory, useing my hands! 40 hrs a week! By the time I get home, I want to die! Lyrica helps some,but it never goes away! But people don't get it cause they can't see it! I don't know what to do! I'm scared of surgery. Any advice out there?? Sorry so long!

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@resawaller Hi Resa. We've spoke in the past on Connect and I recall you had been very distraught. Haven't heard from you in a while…I'm sorry to hear you are still fighting these neurological problems. Surgery is last! How about pain management…epidurals, nerve blocks? Have you tried these yet? Physical Therapy…myofacial release,. Ocupational therapy? Is your Lyrica at proper dose? Can it be increased for better results? I feel your pain and want you to know you are not alone.
Rachel

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@resawaller

Hi,my name is resa and in 54 yrs old. I have always been really healthy and i work a full time job.i hurt my shoulder at work and figured it was just a pulled muscle. A week later my fingers started going numb,and then my hand. FIRST neurologist, after a mri,sent me to a specialist, and he said herniated disc, 2nd neurogist said Chiari malformation and wanted to cut my head open.that freaked me out.and I got a 3rd opinion. And he wants to cut my back open! Now the nerve pain is from my waist up on my left side,all the way down my arm! Numb,burning, sticking,stabbing,pain from hell! My husband don t get how bad it is,and I still havet to work everyday in a glass factory, useing my hands! 40 hrs a week! By the time I get home, I want to die! Lyrica helps some,but it never goes away! But people don't get it cause they can't see it! I don't know what to do! I'm scared of surgery. Any advice out there?? Sorry so long!

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Resa, I looked through some of your previous posts. Firstly my heart goes out to you, I can hear you utter desperation. It's awful to have extreme chronic pain with nothing to give any relief. I was going to ask whether you have tried marijuana? That might be a big help. I noticed you mentioned Tennessee in one post from last year and I assume you live there (we do too) and I know medical marijuana is not legal here yet. I don't presume to suggest you buy some illegally if you would feel uncomfortable doing it. However while you wait for legalization you might try cannabus oil which is legal. Another thing you could try is kratom. Lori @lorirenee1 is a person on Connect who has used kratom extensively. I believe she orders hers from https://ethanaturals.com Anyway, I hope you can find something to give you more relief than you seem to be getting from Lyrica. Best, Hank

REPLY
@resawaller

Hi,my name is resa and in 54 yrs old. I have always been really healthy and i work a full time job.i hurt my shoulder at work and figured it was just a pulled muscle. A week later my fingers started going numb,and then my hand. FIRST neurologist, after a mri,sent me to a specialist, and he said herniated disc, 2nd neurogist said Chiari malformation and wanted to cut my head open.that freaked me out.and I got a 3rd opinion. And he wants to cut my back open! Now the nerve pain is from my waist up on my left side,all the way down my arm! Numb,burning, sticking,stabbing,pain from hell! My husband don t get how bad it is,and I still havet to work everyday in a glass factory, useing my hands! 40 hrs a week! By the time I get home, I want to die! Lyrica helps some,but it never goes away! But people don't get it cause they can't see it! I don't know what to do! I'm scared of surgery. Any advice out there?? Sorry so long!

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@resawaller @jesfactsmon @rwinney Hi Resa, I want to chime in here to try to help you. Hank and Rachel have said many of the things I would say, but I do want to really confirm how much Kratom helps. It is a plant from the SE Asia, and is put into pill form. Buy it at ethanaturals.com It is the only thing I use that really helps nerve type pain. I swear by it. Unfortunately, I have read that it can be addictive, so I take it every other day. But it literally takes pain away for 2 to 3 hours. If you want to know more, please let me know. Lori Renee

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@lorirenee1

@resawaller @jesfactsmon @rwinney Hi Resa, I want to chime in here to try to help you. Hank and Rachel have said many of the things I would say, but I do want to really confirm how much Kratom helps. It is a plant from the SE Asia, and is put into pill form. Buy it at ethanaturals.com It is the only thing I use that really helps nerve type pain. I swear by it. Unfortunately, I have read that it can be addictive, so I take it every other day. But it literally takes pain away for 2 to 3 hours. If you want to know more, please let me know. Lori Renee

Jump to this post

Thanks for answering me! I feel so alone in my nerve pain I want to scream! Nice to know I'm not the only one with this invisible pain ! I would love to know more about kratom! How much does it cost ?and is it hard to get?

REPLY

I haven't written in this thread yet, but I'll try to summarize and hit the high (and some low) points.

It began with a tingling in my feet ten years ago. When I started to experience pain, I went to the neurologist, who confirmed peripheral neuropathy in 2013. Shortly after that he retired, and the neurologist he recommended was disappointing, so I saw two others until they also retired. My PCP started working through the list of medications that are typically prescribed for pn. After a series of unsuccessful attempts, he referred me to the neurologist I didn't care for, but by then he had a few more years under his belt, and as I got to know him, and was able to get him to talk more, my opinion has changed. He went through a lot of meds and tests, and sent me to the teaching hospital in Portland, Oregon, where the diagnosis was defined more fully. Now it's idiopathic small fiber peripheral polyneuropathy, and the beginning stages of autonomic neuropathy, which helped me understand what was going on with my vision esophageal dysmotility, bladder and bowel function, ED, and tripping and having episodes of sudden, temporary muscle weakness and some balance challenges.

I began seeing a great pain specialist, and he had his own long list of things to try. He suggested a spinal cord stimulator implant in 2016, and in June of 2017, I went through the seven day trial, with 80% pain reduction!! How good it felt after living with 5-8 level pain. The honeymoon lasted about 18 months. At that point I needed to have the Abbott rep adjust my controller every 3 months. Since the first of this year, the stimulator has become less and less effective, and my pain has been increasing. It's worst when I lie down or put my feet up in my recliner. The pain is now 6-9 all the time. Morphine sulfate contin is the only medication that has consistently helped take the edge off the pain. All of the meds, too many to remember, have either done nothing, had unacceptable side effects, or only worked for a short time.

The pain began in the balls of my feet, moved into my toes, then my whole foot, and a few months ago to my ankles. Now it's making its way up my legs to my knees. I have numbness in other places, as well.

Today, 6/26/20, I had an appointment with the neurospecialist. She had ordered an MRI last year, so she could look with more clarity at the neural space in my spinal cord down to my pelvis. She told me today that it's very likely that at least some of my pain is issuing from the lumbar area where the nerves are being impinged, along with other issues. I'm afraid to be too hopeful for a reduction of my pain. She said that I would probably continue to have the stimulator, but the settings would probably be quite different. And maybe I'll be able to back off some of my meds.

I can't get the surgery done until the end of summer, around the first of October, because I put 5-7 hours a day in yard work and misc. maintenance stuff. I'll just push through the pain, knowing that there's a chance that it will probably be much better in the fall.

To back up, before neuropathy entered my life, I had been living with major depression, anxiety disorder and PTSD since 2004, and probably longer. I attempted suicide several times around 2005-06, and admitted myself to an inpatient treatment facility for six weeks. So, I mention that to give a sense of the context of the worsening chronic intractable pain. Mental pain and physical pain feed off each other, making it harder to control either source of pain.

I hope that in a few months I'll be writing a different story. Time will tell.

Jim

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@jimhd

I haven't written in this thread yet, but I'll try to summarize and hit the high (and some low) points.

It began with a tingling in my feet ten years ago. When I started to experience pain, I went to the neurologist, who confirmed peripheral neuropathy in 2013. Shortly after that he retired, and the neurologist he recommended was disappointing, so I saw two others until they also retired. My PCP started working through the list of medications that are typically prescribed for pn. After a series of unsuccessful attempts, he referred me to the neurologist I didn't care for, but by then he had a few more years under his belt, and as I got to know him, and was able to get him to talk more, my opinion has changed. He went through a lot of meds and tests, and sent me to the teaching hospital in Portland, Oregon, where the diagnosis was defined more fully. Now it's idiopathic small fiber peripheral polyneuropathy, and the beginning stages of autonomic neuropathy, which helped me understand what was going on with my vision esophageal dysmotility, bladder and bowel function, ED, and tripping and having episodes of sudden, temporary muscle weakness and some balance challenges.

I began seeing a great pain specialist, and he had his own long list of things to try. He suggested a spinal cord stimulator implant in 2016, and in June of 2017, I went through the seven day trial, with 80% pain reduction!! How good it felt after living with 5-8 level pain. The honeymoon lasted about 18 months. At that point I needed to have the Abbott rep adjust my controller every 3 months. Since the first of this year, the stimulator has become less and less effective, and my pain has been increasing. It's worst when I lie down or put my feet up in my recliner. The pain is now 6-9 all the time. Morphine sulfate contin is the only medication that has consistently helped take the edge off the pain. All of the meds, too many to remember, have either done nothing, had unacceptable side effects, or only worked for a short time.

The pain began in the balls of my feet, moved into my toes, then my whole foot, and a few months ago to my ankles. Now it's making its way up my legs to my knees. I have numbness in other places, as well.

Today, 6/26/20, I had an appointment with the neurospecialist. She had ordered an MRI last year, so she could look with more clarity at the neural space in my spinal cord down to my pelvis. She told me today that it's very likely that at least some of my pain is issuing from the lumbar area where the nerves are being impinged, along with other issues. I'm afraid to be too hopeful for a reduction of my pain. She said that I would probably continue to have the stimulator, but the settings would probably be quite different. And maybe I'll be able to back off some of my meds.

I can't get the surgery done until the end of summer, around the first of October, because I put 5-7 hours a day in yard work and misc. maintenance stuff. I'll just push through the pain, knowing that there's a chance that it will probably be much better in the fall.

To back up, before neuropathy entered my life, I had been living with major depression, anxiety disorder and PTSD since 2004, and probably longer. I attempted suicide several times around 2005-06, and admitted myself to an inpatient treatment facility for six weeks. So, I mention that to give a sense of the context of the worsening chronic intractable pain. Mental pain and physical pain feed off each other, making it harder to control either source of pain.

I hope that in a few months I'll be writing a different story. Time will tell.

Jim

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Jim I wish you very good success with the surgery and that the neurologist is correct in the diagnosis that some of your pain is due to impingement on the nerves in your spinal column. Just to get to a point where you can stabilize at a level of pain that you could tolerate would be sensational! Best, Hank

REPLY
@jimhd

I haven't written in this thread yet, but I'll try to summarize and hit the high (and some low) points.

It began with a tingling in my feet ten years ago. When I started to experience pain, I went to the neurologist, who confirmed peripheral neuropathy in 2013. Shortly after that he retired, and the neurologist he recommended was disappointing, so I saw two others until they also retired. My PCP started working through the list of medications that are typically prescribed for pn. After a series of unsuccessful attempts, he referred me to the neurologist I didn't care for, but by then he had a few more years under his belt, and as I got to know him, and was able to get him to talk more, my opinion has changed. He went through a lot of meds and tests, and sent me to the teaching hospital in Portland, Oregon, where the diagnosis was defined more fully. Now it's idiopathic small fiber peripheral polyneuropathy, and the beginning stages of autonomic neuropathy, which helped me understand what was going on with my vision esophageal dysmotility, bladder and bowel function, ED, and tripping and having episodes of sudden, temporary muscle weakness and some balance challenges.

I began seeing a great pain specialist, and he had his own long list of things to try. He suggested a spinal cord stimulator implant in 2016, and in June of 2017, I went through the seven day trial, with 80% pain reduction!! How good it felt after living with 5-8 level pain. The honeymoon lasted about 18 months. At that point I needed to have the Abbott rep adjust my controller every 3 months. Since the first of this year, the stimulator has become less and less effective, and my pain has been increasing. It's worst when I lie down or put my feet up in my recliner. The pain is now 6-9 all the time. Morphine sulfate contin is the only medication that has consistently helped take the edge off the pain. All of the meds, too many to remember, have either done nothing, had unacceptable side effects, or only worked for a short time.

The pain began in the balls of my feet, moved into my toes, then my whole foot, and a few months ago to my ankles. Now it's making its way up my legs to my knees. I have numbness in other places, as well.

Today, 6/26/20, I had an appointment with the neurospecialist. She had ordered an MRI last year, so she could look with more clarity at the neural space in my spinal cord down to my pelvis. She told me today that it's very likely that at least some of my pain is issuing from the lumbar area where the nerves are being impinged, along with other issues. I'm afraid to be too hopeful for a reduction of my pain. She said that I would probably continue to have the stimulator, but the settings would probably be quite different. And maybe I'll be able to back off some of my meds.

I can't get the surgery done until the end of summer, around the first of October, because I put 5-7 hours a day in yard work and misc. maintenance stuff. I'll just push through the pain, knowing that there's a chance that it will probably be much better in the fall.

To back up, before neuropathy entered my life, I had been living with major depression, anxiety disorder and PTSD since 2004, and probably longer. I attempted suicide several times around 2005-06, and admitted myself to an inpatient treatment facility for six weeks. So, I mention that to give a sense of the context of the worsening chronic intractable pain. Mental pain and physical pain feed off each other, making it harder to control either source of pain.

I hope that in a few months I'll be writing a different story. Time will tell.

Jim

Jump to this post

@jimhd Thank you for sharing your neuropathy journey. Will be praying that October comes quickly for you and for a successful surgery. It sounds promising and hopefully it will lift your spirits even more. God Bless.

REPLY
@jimhd

I haven't written in this thread yet, but I'll try to summarize and hit the high (and some low) points.

It began with a tingling in my feet ten years ago. When I started to experience pain, I went to the neurologist, who confirmed peripheral neuropathy in 2013. Shortly after that he retired, and the neurologist he recommended was disappointing, so I saw two others until they also retired. My PCP started working through the list of medications that are typically prescribed for pn. After a series of unsuccessful attempts, he referred me to the neurologist I didn't care for, but by then he had a few more years under his belt, and as I got to know him, and was able to get him to talk more, my opinion has changed. He went through a lot of meds and tests, and sent me to the teaching hospital in Portland, Oregon, where the diagnosis was defined more fully. Now it's idiopathic small fiber peripheral polyneuropathy, and the beginning stages of autonomic neuropathy, which helped me understand what was going on with my vision esophageal dysmotility, bladder and bowel function, ED, and tripping and having episodes of sudden, temporary muscle weakness and some balance challenges.

I began seeing a great pain specialist, and he had his own long list of things to try. He suggested a spinal cord stimulator implant in 2016, and in June of 2017, I went through the seven day trial, with 80% pain reduction!! How good it felt after living with 5-8 level pain. The honeymoon lasted about 18 months. At that point I needed to have the Abbott rep adjust my controller every 3 months. Since the first of this year, the stimulator has become less and less effective, and my pain has been increasing. It's worst when I lie down or put my feet up in my recliner. The pain is now 6-9 all the time. Morphine sulfate contin is the only medication that has consistently helped take the edge off the pain. All of the meds, too many to remember, have either done nothing, had unacceptable side effects, or only worked for a short time.

The pain began in the balls of my feet, moved into my toes, then my whole foot, and a few months ago to my ankles. Now it's making its way up my legs to my knees. I have numbness in other places, as well.

Today, 6/26/20, I had an appointment with the neurospecialist. She had ordered an MRI last year, so she could look with more clarity at the neural space in my spinal cord down to my pelvis. She told me today that it's very likely that at least some of my pain is issuing from the lumbar area where the nerves are being impinged, along with other issues. I'm afraid to be too hopeful for a reduction of my pain. She said that I would probably continue to have the stimulator, but the settings would probably be quite different. And maybe I'll be able to back off some of my meds.

I can't get the surgery done until the end of summer, around the first of October, because I put 5-7 hours a day in yard work and misc. maintenance stuff. I'll just push through the pain, knowing that there's a chance that it will probably be much better in the fall.

To back up, before neuropathy entered my life, I had been living with major depression, anxiety disorder and PTSD since 2004, and probably longer. I attempted suicide several times around 2005-06, and admitted myself to an inpatient treatment facility for six weeks. So, I mention that to give a sense of the context of the worsening chronic intractable pain. Mental pain and physical pain feed off each other, making it harder to control either source of pain.

I hope that in a few months I'll be writing a different story. Time will tell.

Jim

Jump to this post

@jimhd Well Jim, there is no doubt you are a warrior. I get you and your decision to put off the procedure until Fall. I firmly believe that all good things come to those who wait and this will be a great answer for your pain. All my well wishes to you always.
Rachel

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@resawaller

Thanks for answering me! I feel so alone in my nerve pain I want to scream! Nice to know I'm not the only one with this invisible pain ! I would love to know more about kratom! How much does it cost ?and is it hard to get?

Jump to this post

Well it's not cheap but you can by a small quantity from the Ethanaturals site for around $20 or less that will be enough to tell you whether it will help you or not. Can't remember which ones we bought (based on Lori Renee's recommendation) but @lorirenee1 can surely steer you to it. Best, Hank

REPLY
@resawaller

Thanks for answering me! I feel so alone in my nerve pain I want to scream! Nice to know I'm not the only one with this invisible pain ! I would love to know more about kratom! How much does it cost ?and is it hard to get?

Jump to this post

@resawaller @jesfactsmon @rwinney Resa, here is more about Kratom. Rachel and Hank, I am thinking maybe you guys could use a refresher? I literally do not know what I would do without Kratom. Only buy it from ethanaturals.com It is approved by the American Kratom Society, and you know you are getting the real deal. Buy it in pill form. You do not want the powder. It is vile tasting, and very hard to take. Buy any of the pills that say that they are for body relief, pain. In theory, you are supposed to rotate the use of different kinds of the pills, so I would choose 3 types, and rotate them. Personally, I would buy 3 bags of the pills, each with the net weight of .30 grams. This supplies you enough pills to really give them a solid try. I take 9 pills at a time, usually 2-3x a day, depending on pain level. This may sound like a lot, but 8 pills weigh approximately 2.5 grams. (one average size paperclip weighs about a gram.) So, what I am taking is just a moderate amount. The trick is to take the LEAST amount, to get the desired effect. I had to experiment with how much to take. I am 5 feet 4 inches, and weigh 160 pounds. (Chunka, chunka!) So for my height and body weight, this seems to work for me. DO NOT TAKE KRATOM EVERY DAY. In theory, it can create addiction, but I have never experienced this at all. I do take it with my other meds for blood pressure, cholesterol, a cancer drug. No problem with side effects. Also, ethanaturals.com has 30% off sales all the time. Maybe register with them, so you get emails of when their stuff is on sale. I do wait for sales, because the stuff is not cheap. Anyway, best of luck with this miracle plant. Love and help with pain, Lori

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@resawaller @rwinney @jesfactsmon Hi, a touch more about Kratom. Best taken on an empty stomach, but you also can take it with food. I find if I do take it on an empty stomach, it works best. Happy Kratom! Lori

REPLY
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