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.

@pryor

I have just been diagnosed with Idiopathic Peripheral Neuropathy, both lower legs with no pain but with Muscular Atrophy. What to do?

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Hello @pryor, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. What to do is a great question that unfortunately has a lot of answers depending on who you talk to. My symptoms were pretty much the same as yours only I waited 20+ years to get a diagnosis because I was always told if I do have nerve damage and no pain, there is nothing they can do to help with it. So I had to do my own research which is how I found Connect. From my perspective, the best thing you can do right now is learn as much as you can about your condition and also what others have found helps them. It is a lot of reading but hopefully there is a light at the end of the tunnel for you.

Besides reading through the member stories in this discussion, you can also search for other discussions in the Neuropathy group to see if there are discussions that may have answers for you. Here is the Neuropathy group page that lists the discussions – https://connect.mayoclinic.org/group/neuropathy/

Here are my two favorite sites for learning more about Neuropathy and research going on.
— Neuropathy Commons: https://neuropathycommons.org/
— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

What worries you most, the muscular atrophy?

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Hi my name is Diane Costella. I had a excruciating zapping that would shoot to the top of my head. I always knew it was coming on because the day before it was painful to touch the side of my face and it hurt to blink. An attack would come in clusters. I was diagnosed with trimenginal neuralgia. In 2007 I started having trouble with my bladder by my urologist just made every excuse under the sun as discount it. In 2013 my bladder stopped functioning (severe urine retention). I had bilateral bladder stimulators implanted in early 2014. No one knew why this happened. In October 2018 I got a flu shot and had a serious reaction. I had terrible flu like symptoms for months, malaise, a terrible burning in my thighs, I couldn’t stand for prolonged periods of time, just a terrible feeling of unwellness. It took until August of 2020 (many doctors and thousands of dollars later) to finally get my diagnosis of autonomic small fiber neuropathy. It is a miserable disease. I take 1900 mg of Gaberpentin daily, Mestinon for Dysautonomia and a compound made up of five different medications for my thighs. I now have essential tremors. This medication does help but I am not pain free, I still can’t stand for longer periods of time or sit for that matter. I sometimes use a cane and I walk on the side of my right foot because my toes are so numb. I have numbness is both feet, tingling sensations in my fingers and toes. If I over due it at all I am in bed the next day with severe pain and exhaustion. Even going to a family gathering is painful and exhausting. I now know the zapping pain in my head and non functioning bladder are all part of this disease but no doctor put it together. Finally an neurologist decided to do skin biopsies which confirmed my diagnosis. That’s my story.

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@mcd123 feel free to ask your Cymbalta question here.

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I have been taking Gabapentin for several months now for severe neuropathy. Prior to,that I took lyrica. I have had numbers and tingling in my feet for many years. The pain, burning and electric shocks to my toes have increased dramatically over the last two years. On Monday my neurologist put me on Cymbalta. I took it for three days and haven't slept in two. The Cymbalta has dramatically increased my RLS. I read where this is one of the side effects. I take 0.5mg of klonopin for RLS but it did not cover the augmentation. My question is have others had this particular side effect from Cymbalta and how did they handle it. Also, has anyone else found good results from other meds similar to Cymbalta? Thanks for any and all input. Cathy

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@mcd123

I have been taking Gabapentin for several months now for severe neuropathy. Prior to,that I took lyrica. I have had numbers and tingling in my feet for many years. The pain, burning and electric shocks to my toes have increased dramatically over the last two years. On Monday my neurologist put me on Cymbalta. I took it for three days and haven't slept in two. The Cymbalta has dramatically increased my RLS. I read where this is one of the side effects. I take 0.5mg of klonopin for RLS but it did not cover the augmentation. My question is have others had this particular side effect from Cymbalta and how did they handle it. Also, has anyone else found good results from other meds similar to Cymbalta? Thanks for any and all input. Cathy

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Good afternoon @mcd123, To answer your first question, I have been taken Cymbalta for GAD, high anxiety for 2 years now. I tapered off Nortryptilene before starting Cymbalta. Although it was great for support healthy sleep, it didn't do as much for the anxiety which was causing significantly more pain. That's what anxiety does and I needed help in the mornings. I replaced the evening Nortryptilene with a 2:1 CBD/THC tincture of medical cannabis. It is working well for me so far.

Oh….and I also tapered off part of my Gabapentin dosage from 1200 mg to 600 mg.

May you be healthy and whole.

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@artscaping

Good afternoon @mcd123, To answer your first question, I have been taken Cymbalta for GAD, high anxiety for 2 years now. I tapered off Nortryptilene before starting Cymbalta. Although it was great for support healthy sleep, it didn't do as much for the anxiety which was causing significantly more pain. That's what anxiety does and I needed help in the mornings. I replaced the evening Nortryptilene with a 2:1 CBD/THC tincture of medical cannabis. It is working well for me so far.

Oh….and I also tapered off part of my Gabapentin dosage from 1200 mg to 600 mg.

May you be healthy and whole.

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I stopped taking all anxiety medicines several years ago due to some serious side affects and recently started medical marijuana including Tincture with a higher CBD and less THC content and it seems to be working. I've always been high stress, high anxiety type A personality my entire life yet at 61 years old I noticed that high anxiety and stress, worrying about everything etc has wreaked havoc on my health, heart, CNS etc.
So far so good with Tincture. Only thing I must be careful of is with my high anxiety that the higher the THC amounts the more my anxiety is agitated so I get medical marijuana products with always a higher CBD to THC ratio or at least a 1/1 ratio.

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@joannemm30809

I stopped taking all anxiety medicines several years ago due to some serious side affects and recently started medical marijuana including Tincture with a higher CBD and less THC content and it seems to be working. I've always been high stress, high anxiety type A personality my entire life yet at 61 years old I noticed that high anxiety and stress, worrying about everything etc has wreaked havoc on my health, heart, CNS etc.
So far so good with Tincture. Only thing I must be careful of is with my high anxiety that the higher the THC amounts the more my anxiety is agitated so I get medical marijuana products with always a higher CBD to THC ratio or at least a 1/1 ratio.

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Love your comment, glad it’s working for you too.

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My journey with PN started when I noticed that my feet felt like I was still wearing my combat boots. I am a retired Army Officer with a total of 35 years of service. I have also deployed to combat in Afghanistan and Iraq. Shortly after retiring in 2013, I started having more sever issues with tingling and numbness in both feet and legs. I was eventually diagnosed with Idiopathic Sensory Motor Peripheral Neuropathy. I have had the Nerve Conduction test and sensory test. Most of the time I do not feel the pin prick in my legs and feet. Now my feet are always red and shiny. My legs feel like bugs crawling just under the skin. I get angry fairly easy, and I want to cry, about my PN and the VAs lack of motivation to work towards a definitive diagnosis.

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@revfluegel

My journey with PN started when I noticed that my feet felt like I was still wearing my combat boots. I am a retired Army Officer with a total of 35 years of service. I have also deployed to combat in Afghanistan and Iraq. Shortly after retiring in 2013, I started having more sever issues with tingling and numbness in both feet and legs. I was eventually diagnosed with Idiopathic Sensory Motor Peripheral Neuropathy. I have had the Nerve Conduction test and sensory test. Most of the time I do not feel the pin prick in my legs and feet. Now my feet are always red and shiny. My legs feel like bugs crawling just under the skin. I get angry fairly easy, and I want to cry, about my PN and the VAs lack of motivation to work towards a definitive diagnosis.

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It’s not only the VA it’s every dr. And health facility. No answers or help for PN. I have been suffering for 4yrs. After my tkr’s . Worse thing and is ruining my life.

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@kp6350

It’s not only the VA it’s every dr. And health facility. No answers or help for PN. I have been suffering for 4yrs. After my tkr’s . Worse thing and is ruining my life.

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I have been dealing with PN for 25-30 years and every trip to the neurologist I hear that there is no cure – only ways to treat the symptoms.

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I have read these stories with much interest, as my journey overlaps with many of yours. Mine started at age 51, 5 years ago. I am hearing you say doctors don't have time to research, there are so many mysteries, hard to diagnose etc. I admire those you with the positive attitude to make the best of it and try to live life to its fullest. My problem is, at my sudden crippling onset 5 years ago, accompanied with an infection/UTI, only bloodwork was done (and nerve conduction study).Then "let's wait & see". Now after 5 years, I am tired of doing nothing. I have moved to a bigger city hoping for better medical care. I'm ok if I'm told so many can't be diagnosed, but let's test me first! I had to beg for a sural nerve biopsy, which was done last week, while my neurologist said an MRI won't tell us anything, so we haven't done that less invasive test. I don't want to bike or run another marathon, I just want to walk and carry a grocery bag at the same time, and help my older husband. Getting off disability and working again would be a big plus. I hear many of you talk about skin biopsies, plasmapheresis, and other attempts to diagnose and maybe treat (bonus if there would be a cure). So I pulled teeth to get this painful ankle nerve biopsy, and I await results then hope we can try something else, but why won't doctors help look for causes rather than tell you to live with it, if there's a chance a reason and help may be found?

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@dbeshears1

I have read these stories with much interest, as my journey overlaps with many of yours. Mine started at age 51, 5 years ago. I am hearing you say doctors don't have time to research, there are so many mysteries, hard to diagnose etc. I admire those you with the positive attitude to make the best of it and try to live life to its fullest. My problem is, at my sudden crippling onset 5 years ago, accompanied with an infection/UTI, only bloodwork was done (and nerve conduction study).Then "let's wait & see". Now after 5 years, I am tired of doing nothing. I have moved to a bigger city hoping for better medical care. I'm ok if I'm told so many can't be diagnosed, but let's test me first! I had to beg for a sural nerve biopsy, which was done last week, while my neurologist said an MRI won't tell us anything, so we haven't done that less invasive test. I don't want to bike or run another marathon, I just want to walk and carry a grocery bag at the same time, and help my older husband. Getting off disability and working again would be a big plus. I hear many of you talk about skin biopsies, plasmapheresis, and other attempts to diagnose and maybe treat (bonus if there would be a cure). So I pulled teeth to get this painful ankle nerve biopsy, and I await results then hope we can try something else, but why won't doctors help look for causes rather than tell you to live with it, if there's a chance a reason and help may be found?

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@dbeshears1 I'm sorry to hear that you had to experience the painful biopsy but I hope it helps you get some answers. Please keep us posted.

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