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.

In the spring of 2015, I went to the doctor for a sinus infection and mentioned that my feet get warm at night. The doctor ignored my sinus infection and used a tuning fork to check my feet. The doctor said I most likely had peripheral neuropathy and to see a neurologist. Before my neurologist appoint my feet started hurting in the evenings and I was taking hydrocodone for the pain. The neurologist did a biopsy and confirmed I had small fiber peripheral neuropathy in both feet. He said there was no cure, it would only get worse and that it would not kill me. My uncle, brother and sister all had peripheral neuropathy. For treatment I was on Gabapentin 900mg three times a day and it did nothing for the pain. They tried several other medications along with pain creams and none of them work on me. Gabapentin works great for my brother. The only thing that helps me is pain pills. I take Methadone HCL 10mg three times a day. If the pain gets bad, I wear cotton socks soaked in cold water for immediate relief. Exercise and a low carb diet also help with the pain.

The neurologist was correct, the pain has only gotten worse over the years. It hurts to stand or walk for more than 30 seconds. The longer I am on my feet the worse the pain gets. I must ride a scooter to shop. It took a couple of years of depression and counseling for me to be comfortable riding a scooter in public. It doesn’t’ bother me to ride it know. I had to by a portable scooter since only a few stores provide them.

I have had insulin resistance since ~2011. I worked out regularly for years and I am only a few pounds overweight.

My current pain management doctor is going to try installing neuro stimulators on both my feet. He did some tests and believes that will help with the ~50% of the pain.

This is my store and I’m sticking to it.

REPLY
@jesfactsmon

Jeff, since you didn't post a reply, I just wanted to see if you read my post to you which I placed over on the other neuropathy discussion regarding your situation and a product called Penetrex. In case you did not, you may want to go over there and read it or at least check out this link and read the review. It might be something you have not tried and perhaps could be of some benefit to you, hopefully. Best regards, Hank
https://smile.amazon.com/gp/customer-reviews/R22GGW9IZXH7X9/ref=cm_cr_getr_d_rvw_ttl?ie=UTF8&ASIN=B071NWDQQ7

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Hi Hank
Sorry for not replying. I get so many posts from this forum that I likely miss some.
Thanks so much fro the suggestion. I just ordered some.
I'll post if it works for me, although I'm a bit skeptical by now, having tried so many things.
Stay healthy. Thanks again!

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@fredjan2016

In the spring of 2015, I went to the doctor for a sinus infection and mentioned that my feet get warm at night. The doctor ignored my sinus infection and used a tuning fork to check my feet. The doctor said I most likely had peripheral neuropathy and to see a neurologist. Before my neurologist appoint my feet started hurting in the evenings and I was taking hydrocodone for the pain. The neurologist did a biopsy and confirmed I had small fiber peripheral neuropathy in both feet. He said there was no cure, it would only get worse and that it would not kill me. My uncle, brother and sister all had peripheral neuropathy. For treatment I was on Gabapentin 900mg three times a day and it did nothing for the pain. They tried several other medications along with pain creams and none of them work on me. Gabapentin works great for my brother. The only thing that helps me is pain pills. I take Methadone HCL 10mg three times a day. If the pain gets bad, I wear cotton socks soaked in cold water for immediate relief. Exercise and a low carb diet also help with the pain.

The neurologist was correct, the pain has only gotten worse over the years. It hurts to stand or walk for more than 30 seconds. The longer I am on my feet the worse the pain gets. I must ride a scooter to shop. It took a couple of years of depression and counseling for me to be comfortable riding a scooter in public. It doesn’t’ bother me to ride it know. I had to by a portable scooter since only a few stores provide them.

I have had insulin resistance since ~2011. I worked out regularly for years and I am only a few pounds overweight.

My current pain management doctor is going to try installing neuro stimulators on both my feet. He did some tests and believes that will help with the ~50% of the pain.

This is my store and I’m sticking to it.

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Hi Fredjan, So sorry to hear about your condition. I to am prediabetic and pain in both feet began a month ago. The doctors thought it was due to a pinched nerve at L5/S1 but I had surgery in March this year to fix that problem but the pain has only gotten worse since then. It has been less than 2 months since the surgery so the nerve is still healing according to the surgeon. Gaba did not work for me. I'm now on a wait list to see the neurologist for another nerve conduction test and a consult on what medication might work. I'm curious about the neuro stimulators your Dr. is recommending. Could you please be more specific so I could bring it up with my Dr? There are several different devices and some require electric stimulation of the nerves in the spine that are causing the problem.
Thanks
James

REPLY
@fredjan2016

In the spring of 2015, I went to the doctor for a sinus infection and mentioned that my feet get warm at night. The doctor ignored my sinus infection and used a tuning fork to check my feet. The doctor said I most likely had peripheral neuropathy and to see a neurologist. Before my neurologist appoint my feet started hurting in the evenings and I was taking hydrocodone for the pain. The neurologist did a biopsy and confirmed I had small fiber peripheral neuropathy in both feet. He said there was no cure, it would only get worse and that it would not kill me. My uncle, brother and sister all had peripheral neuropathy. For treatment I was on Gabapentin 900mg three times a day and it did nothing for the pain. They tried several other medications along with pain creams and none of them work on me. Gabapentin works great for my brother. The only thing that helps me is pain pills. I take Methadone HCL 10mg three times a day. If the pain gets bad, I wear cotton socks soaked in cold water for immediate relief. Exercise and a low carb diet also help with the pain.

The neurologist was correct, the pain has only gotten worse over the years. It hurts to stand or walk for more than 30 seconds. The longer I am on my feet the worse the pain gets. I must ride a scooter to shop. It took a couple of years of depression and counseling for me to be comfortable riding a scooter in public. It doesn’t’ bother me to ride it know. I had to by a portable scooter since only a few stores provide them.

I have had insulin resistance since ~2011. I worked out regularly for years and I am only a few pounds overweight.

My current pain management doctor is going to try installing neuro stimulators on both my feet. He did some tests and believes that will help with the ~50% of the pain.

This is my store and I’m sticking to it.

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I use curcumin which contains turmeric with some relief.

REPLY
@rwinney

As if my story wasn't long enough…I wish to add, for anyone who may be in early stages of neuropathy troubleshooting.

I had a negative EMG/Nerve Conduction Study in 2017 and not diagnosed with SFN until 2019. As I learned that Small Fiber Neuropathy is NOT shown in this test, only Large Fiber Neuropathy, I wondered why noone thought to line me up with a skin biopsy earlier to rule out SFN, given my symptoms of nerve dysfunction and not proving Large Fiber through the test.

In retrospect, I do understand that SFN is still very unknown and misunderstood. I will take some of the blame (it's not all on Drs) for not pushing and learning enough during that time. Such foreign territory, especially when you are overwhelmed by pain.

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in reply to rwinney, I have the same frustration. I have all the symptoms of sfn and one doctor said that is what it is, but no one seems to feel I should have the skin biopsy. Who did it for you? I also have 100% of the symptoms of polymyalgia rheumatica, but still don't know who to take care of me. My primary doctor is sending me to a rheumatologist in early June, but I went to one two years ago and she told me she didn't know what to do for me except to prescribe Lyrica which put into the ER. My question: is this the right specialist to see, i.e., a rheumatologist?

REPLY
@maryflorida

in reply to rwinney, I have the same frustration. I have all the symptoms of sfn and one doctor said that is what it is, but no one seems to feel I should have the skin biopsy. Who did it for you? I also have 100% of the symptoms of polymyalgia rheumatica, but still don't know who to take care of me. My primary doctor is sending me to a rheumatologist in early June, but I went to one two years ago and she told me she didn't know what to do for me except to prescribe Lyrica which put into the ER. My question: is this the right specialist to see, i.e., a rheumatologist?

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Hi @maryflorida, I thought I would jump in and offer some information I've found that may be helpful. A rheumatologist diagnosed my polymyalgia rheumatica (PMR) and a neurologist diagnosed my small fiber peripheral neuropathy.

What is a Rheumatologist?: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Health-Care-Team/What-is-a-Rheumatologist
What is a neurologist?: https://www.medicalnewstoday.com/articles/326717#about

And something that really jumped out at me — What Our Colleagues Should Know: Neurologists & Rheumatologists Must Communicate:
https://www.the-rheumatologist.org/article/colleagues-know-neurologists-rheumatologists-must-communicate/

You mentioned in your first post that your rheumatologist prescribed the Gabapentin and that made you sick and then they prescribed Lyrica and that sent you to the ER. It might be helpful to write down a list of all your symptoms and maybe keep a daily log of your pain levels along with any questions you have for the rheumatologist. One question I would have for the rheumatologist or neurologist for any drug that is prescribed – how does this drug work to treat my symptoms?

Can you update us on how your appointment goes with the rheumatologist in June?

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@maryflorida

in reply to rwinney, I have the same frustration. I have all the symptoms of sfn and one doctor said that is what it is, but no one seems to feel I should have the skin biopsy. Who did it for you? I also have 100% of the symptoms of polymyalgia rheumatica, but still don't know who to take care of me. My primary doctor is sending me to a rheumatologist in early June, but I went to one two years ago and she told me she didn't know what to do for me except to prescribe Lyrica which put into the ER. My question: is this the right specialist to see, i.e., a rheumatologist?

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@maryflorida Hi there. I'm thankful for @johnbishop jumping in. He's got great factual links to share. My neurologist did my skin biopsy. I saw a rheumatologist prior (on my own) because I was wanting to rule out fibromyalgia. It sounds like your upcoming appointment will prove useful. I believe when a Dr tells you that they dont know what to do for you, it's time for a 2nd opinion to verify that is indeed the case. Seeing all these Drs gets exhausting but, when you find the right one it can help enormously. I agree on journaling. The first 2 years of my decline, I journaled symptoms, drugs, procedures. There is alot of physical and mental stress when you dont know whats wrong and are in pain and all over the map. Journaling kept me organized when I'd otherwise lose my thoughts. All the best for your upcoming appointment. Keep persevering. You know your body best.
Be well,
Rachel

REPLY
@johnbishop

Hi @maryflorida, I thought I would jump in and offer some information I've found that may be helpful. A rheumatologist diagnosed my polymyalgia rheumatica (PMR) and a neurologist diagnosed my small fiber peripheral neuropathy.

What is a Rheumatologist?: https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Health-Care-Team/What-is-a-Rheumatologist
What is a neurologist?: https://www.medicalnewstoday.com/articles/326717#about

And something that really jumped out at me — What Our Colleagues Should Know: Neurologists & Rheumatologists Must Communicate:
https://www.the-rheumatologist.org/article/colleagues-know-neurologists-rheumatologists-must-communicate/

You mentioned in your first post that your rheumatologist prescribed the Gabapentin and that made you sick and then they prescribed Lyrica and that sent you to the ER. It might be helpful to write down a list of all your symptoms and maybe keep a daily log of your pain levels along with any questions you have for the rheumatologist. One question I would have for the rheumatologist or neurologist for any drug that is prescribed – how does this drug work to treat my symptoms?

Can you update us on how your appointment goes with the rheumatologist in June?

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John, thank you.. I can't, won't, complain to my children.. they too have enough hardships in life.. One has Sjogren's (sp) disease, another has heart failure. My husband was blessed to have a kidney transplant in 2018 and I take good care of him. But YOU! You know what is like for me and for you. I'll write things down and also let you know what happens with the rheumatologist. God bless you.

REPLY
@jamesinsonoma

Hi Fredjan, So sorry to hear about your condition. I to am prediabetic and pain in both feet began a month ago. The doctors thought it was due to a pinched nerve at L5/S1 but I had surgery in March this year to fix that problem but the pain has only gotten worse since then. It has been less than 2 months since the surgery so the nerve is still healing according to the surgeon. Gaba did not work for me. I'm now on a wait list to see the neurologist for another nerve conduction test and a consult on what medication might work. I'm curious about the neuro stimulators your Dr. is recommending. Could you please be more specific so I could bring it up with my Dr? There are several different devices and some require electric stimulation of the nerves in the spine that are causing the problem.
Thanks
James

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My neuropathy started from a bulging disc at l5/S1. In 2011, I was scheduled for back surgery. Minutes before the procedure the surgeon looked at the new MRI & said he felt the bulge was improving and thought we should cancel the surgery. It was a very emotional time. My back pain did not improve for quite awhile & then I started to get tingly, numb, buzzing in my feet. I am very active with running, walking biking and yoga. My pain is worse when I am lying down. Muscle relaxers and ice give me some relief. My greatest fear is being unable to get outside and move. I haven’t found others with similar story. I was excited to see James had issues with L5S1. Sometimes, I feel it is all n my head. Knowing someone with similar causes is a relief.

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@djones6340

My neuropathy started from a bulging disc at l5/S1. In 2011, I was scheduled for back surgery. Minutes before the procedure the surgeon looked at the new MRI & said he felt the bulge was improving and thought we should cancel the surgery. It was a very emotional time. My back pain did not improve for quite awhile & then I started to get tingly, numb, buzzing in my feet. I am very active with running, walking biking and yoga. My pain is worse when I am lying down. Muscle relaxers and ice give me some relief. My greatest fear is being unable to get outside and move. I haven’t found others with similar story. I was excited to see James had issues with L5S1. Sometimes, I feel it is all n my head. Knowing someone with similar causes is a relief.

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Hello @djones6340, Welcome to Connect. One of the great things about Connect is sharing and finding other members with similar stories and symptoms. @jenniferhunter created another discussion where you may also find some helpful suggestions.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you heard of Myofascial Release Therapy?

REPLY
@djones6340

My neuropathy started from a bulging disc at l5/S1. In 2011, I was scheduled for back surgery. Minutes before the procedure the surgeon looked at the new MRI & said he felt the bulge was improving and thought we should cancel the surgery. It was a very emotional time. My back pain did not improve for quite awhile & then I started to get tingly, numb, buzzing in my feet. I am very active with running, walking biking and yoga. My pain is worse when I am lying down. Muscle relaxers and ice give me some relief. My greatest fear is being unable to get outside and move. I haven’t found others with similar story. I was excited to see James had issues with L5S1. Sometimes, I feel it is all n my head. Knowing someone with similar causes is a relief.

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@djones6340 Hi! Please dont ever feel that it's all in your head. I was there too and it took me some time to come to my senses that it was not in my head. I felt and lived it. It's difficult when you cant line up other stories similar to yours. I always say, comfort numbers and well as validation that someone else out there knows what you are talking about. Glad you are finding some relief. I hope time is your friend with healing of nerves. Be well.
Rachel

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@rwinney

@djones6340 Hi! Please dont ever feel that it's all in your head. I was there too and it took me some time to come to my senses that it was not in my head. I felt and lived it. It's difficult when you cant line up other stories similar to yours. I always say, comfort numbers and well as validation that someone else out there knows what you are talking about. Glad you are finding some relief. I hope time is your friend with healing of nerves. Be well.
Rachel

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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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