Member Neuropathy Journey Stories: What's Yours?

@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

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

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

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

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?

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?

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

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