1. < Neuropathy
Mentor

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.

Interested in more discussions like this? Go to the Neuropathy Support Group.

jamesbstarkman | @jamesbstarkman | Jun 23, 2021

Dear Rachel…..I instantly acquired admiration for your thorough and intellectual pursuit of a source-based solution to your multiple causes of brain induced pain.
I am not a doctor or neurologist but at 86 and a sufferer of peripheral neuropathy in both legs, here’s what I have found with the cooperation of a caring family general practitioner (a cardiologist specialist) to be very effective in MNAGING my discomfort and pain: I take as strictly prescribed one Oxycodone APAP 5/325 pill along with one over-the-counter stool softener EVERY 4 hours with a MAXIMUM of 4 pills daily (fewer if discomfort permits). IT WORKs❗️
Common sense also dictates as much physical activity as possible. As a lifelong stock market guy which I enjoy tremendously from dawn to dusk the attendant couch potato tendency obviously accelerates leg muscle strength deterioration, but I’m having fun and summer swimming is a draw and pleasantly helpful. Watch every step with exceptional care since a fall especially at this age can ruin everything. A loving caring spouse helps a lot too, as 50 years of marriage to a great mate 10 years younger makes me especially fortunate.
Many doctors are reluctant or outright refusing to prescribe a potentially addictive opioid medication such as OxyContin. But if strictly self enforced discipline in use is employed by the patient, this is a potential problem avoided. Pharmacists by law cannot dispense more than the prescribed dosage over any 30 day period, so that fear of running short by the patient is also a meaningful restraint in overuse.
Give it a try under a sympathetic doctor’s supervision. I found Gabapentin only slightly filled pain while unacceptably dulling the mind. Not bad as a sleeping aid if taken before bedtime.
Post prostate surgery localized radiation caused permanent neurologically caused nerve damage in the prostate area with attendant Titanis with the passage of stool. Oxy is strong enough to manage this. It also is helpful with pain from shoulder rotator cuff and knee problems.Titinius acts as a muffled alarm bell of the entry of stool to the former prostate area. The nerve damage is permanent as I suspect other permanent nerve damage located in other parts of the body (or brain) cause the neuropathy symptoms suffered by so many of us.
Good luck with use of my management prescription.
Jim Starkman

REPLY
1 reply
jamesbstarkman | @jamesbstarkman | Jun 23, 2021
In reply to @jamesbstarkman "Dear Rachel…..I instantly acquired admiration for your thorough and intellectual pursuit of a source-based solution to..." + (show)
@jamesbstarkman

Dear Rachel…..I instantly acquired admiration for your thorough and intellectual pursuit of a source-based solution to your multiple causes of brain induced pain.
I am not a doctor or neurologist but at 86 and a sufferer of peripheral neuropathy in both legs, here’s what I have found with the cooperation of a caring family general practitioner (a cardiologist specialist) to be very effective in MNAGING my discomfort and pain: I take as strictly prescribed one Oxycodone APAP 5/325 pill along with one over-the-counter stool softener EVERY 4 hours with a MAXIMUM of 4 pills daily (fewer if discomfort permits). IT WORKs❗️
Common sense also dictates as much physical activity as possible. As a lifelong stock market guy which I enjoy tremendously from dawn to dusk the attendant couch potato tendency obviously accelerates leg muscle strength deterioration, but I’m having fun and summer swimming is a draw and pleasantly helpful. Watch every step with exceptional care since a fall especially at this age can ruin everything. A loving caring spouse helps a lot too, as 50 years of marriage to a great mate 10 years younger makes me especially fortunate.
Many doctors are reluctant or outright refusing to prescribe a potentially addictive opioid medication such as OxyContin. But if strictly self enforced discipline in use is employed by the patient, this is a potential problem avoided. Pharmacists by law cannot dispense more than the prescribed dosage over any 30 day period, so that fear of running short by the patient is also a meaningful restraint in overuse.
Give it a try under a sympathetic doctor’s supervision. I found Gabapentin only slightly filled pain while unacceptably dulling the mind. Not bad as a sleeping aid if taken before bedtime.
Post prostate surgery localized radiation caused permanent neurologically caused nerve damage in the prostate area with attendant Titanis with the passage of stool. Oxy is strong enough to manage this. It also is helpful with pain from shoulder rotator cuff and knee problems.Titinius acts as a muffled alarm bell of the entry of stool to the former prostate area. The nerve damage is permanent as I suspect other permanent nerve damage located in other parts of the body (or brain) cause the neuropathy symptoms suffered by so many of us.
Good luck with use of my management prescription.
Jim Starkman

Jump to this post

Sorry for a few misspellings

REPLY
Kelly Thompson | @webdx2 | Jun 23, 2021
In reply to @johnbishop "Hello KT @webdx2, Welcome to Connect and thank you for sharing your neuropathy journey. Knowledge is..." + (show)
@johnbishop

Hello KT @webdx2, Welcome to Connect and thank you for sharing your neuropathy journey. Knowledge is power and the more you learn about your condition, the better questions you can ask your doctors and hopefully find something that helps with your symptoms. You are off to a great start and hats off to your girlfriend for getting you to take the first step. Based on you mentioning severe pain to the touch underneath the back of your skull you may want to view the following discussion to see if it matches some of your symptoms.

Occipital Neuralgia: https://connect.mayoclinic.org/discussion/occipital-neuralgia/

More information that may be helpful:
-- Occipital Neuralgia: https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Occipital-Neuralgia
-- What is this pain in the back of my head?: https://www.medicalnewstoday.com/articles/321017#occipital-neuralgia

If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Do mind sharing which of your symptoms bothers you the most?

Jump to this post

Thank you for the response and the links, John!

It’s hard for me to answer your question. I try to look at things long term and feel that I can get hearing aids to help with hearing and glasses to help with vision, but when I comes to the balance/dizziness and headaches, those are things that I have a little less control over. I did buy a cane/walking stick that I know I’ll be using due to the SFN impact to my lower legs and feet, but that only helps so much.

I will certainly keep networking here and asking questions as you suggested and see what comes from it. Thanks again!

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jun 27, 2021
In reply to @susantg "Thank you for responding. I have had pain in my lower legs for a couple of..." + (show)
@susantg

Thank you for responding. I have had pain in my lower legs for a couple of years. I thought it might be from my vertebrae fractures. I told my doctor and they tested me and showed neuropathy. Said it probably is from my spine, not much you can do.now I have extreme pain in my feet and lower legs. My fractures do not hurt when laying down. The Neuropathy is just terrible. I take Tramadol 50 mg. It seems to help. The pain wakes me up off and on all night. I hope I made some sense. I have a hard time talking about this. So thankful for this site and your interest.
Susan

Jump to this post

Greetings @susantg on this beautiful summer day. It is sad to hear about the intense pain that you have endured for way too long. When you say the tests showed neuropathy, can you tell me what kind of tests? Was your only symptom pain? Was there any discussion about the different types of neuropathy and which type the tests revealed? I have small fiber neuropathy (SFN) and it was discovered with a skin punch biopsy.

Four years ago I had what I call screaming pain in my feet and lower legs. It always started about 5:30 in the morning and was gone in a couple of hours. Now I have ice-cold feet when I lie down to sleep at night. The point I am trying to make is that there are many types of neuropathy that take many forms as time passes. Or at least this has been my experience.

I also have a diagnosis of CMPS, Chronic Myofascial Pain Syndrome. As you probably know, fascia is the material in our bodies that connects all of the muscles, ligaments, and tissues. When the fascia is restricted in any way, the messages get confused and pain is the result.

And now, why am I telling you this. It is because John Bishop (@johnbishop) mentioned MFR, Myofascial Release therapy as a possibly helpful treatment for you. He also gave you the Connect link. I would like to introduce you to @jenniferhunter. Not only does she know a lot about MFR......she also has some spine history that might be helpful.

I will leave you with this revealing statement. Without MFR, I would not be here. I know that without a cure, the condition is progressive. And for me, without two sessions a week of MFR, my days would not ring with joy at least once or twice.

May you be free of suffering and the causes of suffering.
Chris

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jul 20, 2021
In reply to @johnbishop "I started my journey with neuropathy when I was in my early 50s, with some numbness..." + (show)
@johnbishop

I started my journey with neuropathy when I was in my early 50s, with some numbness that started in my toes on both feet. I mostly ignored it because there was no pain and I really didn’t think much about it. After a few years, the numbness progressed to the bottoms of both feet and I mentioned it to my primary care doctor who said it could be nerve damage. He said they could run some tests and determine if it was nerve damage. I asked if they determine if it is nerve damage what can be done. I was surprised when he mentioned there was not any treatment that will help with numbness.

The numbness gradually increased over the years and in my early 70s the numbness had progressed to just below my knees. It was at this point that I was worried about my mobility and what the future would hold so I talked with my primary care doctor who helped me get an appointment with a neurologist. The neurologist scheduled some lab tests including an MRI, nerve conduction test and a physical exam. I was diagnosed with idiopathic small fiber peripheral neuropathy but unlike most people diagnosed with neuropathy I only had the numbness and no associated pain. I was disappointed that there was no treatment available even though I had a diagnosis but that is pretty much what my first doctor had told me 20 years ago.

After I received my diagnosis of small fiber PN I was trying every topical cream available that said it would help neuropathy with zero results. Then I found a book by Dr. Terry Wahls, The Wahls Protocol. She shared how using functional medicine and nutrient rich foods helped her treat her symptoms of multiple sclerosis and get her life back. This started my journey on looking at nutrition as a possible treatment for my neuropathy.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it is up to you to do your own research and avoid scams. Fortunately, there is a lot of information on how to avoid scams but it is out of sight, out of mind for a lot of folks. Here are the ones I have used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page:
-- https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it:
-- https://nccih.nih.gov/health/decisions

That said, I have found a protocol of supplements developed by fellow neuropathy patients that works for me and has helped others with PN get off the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was high.

You can read more about it in this discussion:

Have you tried the new Protocol 525 product for neuropathy relief? https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I have not made any more progress, but I am OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Recently I have seen some feeling return to my feet at different times during the day which gives me some hope of more progress and a new normal.

I’ve been a member of Mayo Clinic Connect since 2016. And it gives me great comfort to talk with others, share ideas and information, not only here in the Neuropathy group, but also in other groups as new health questions come up, like managing PMR, getting a knee replacement, a CPAP, etc. Ahh, the joys of aging. Hey, if you qualify ;-), you might also want to join me in this group on Connect: Aging Well. (See all 70+ Groups on Mayo Clinic Connect here: https://connect.mayoclinic.org/groups/)

What’s your neuropathy story?

Jump to this post

Hi @rnlorena, Thank you for the private message. I thought I would respond to in the Member Neuropathy Journey Stories discussion because you asked some good questions that are ones other members may also be thinking about. I agree with you that if there is any doubt or concerns, getting a second opinion is a wise thing to do.

I am close to the Rochester Mayo Clinic Campus so that has been my primary location for seeing specialists by referrals from my doctor at the local family clinic which changes every couple of years 🙂. If you would like get a second opinion from Mayo Clinic, you can find the contact information here http://mayocl.in/1mtmR63. Also, there is more information about the Florida Mayo Clinic Campus here: https://www.mayoclinic.org/patient-visitor-guide/florida

If you click the +show link above, you can read my neuropathy journey story. You might also enjoy one of my favorite websites - The Patient Revolution: https://patientrevolution.org/ It's all about doctor/patient relationships and getting your questions answered.

REPLY
efgh1020 | @efgh1020 | Jul 27, 2021

It does help. I too have friends who can’t understand why I am not making “progress.” I am, but not physically. I have more energy and endurance for visitors, and am getting out more with help. I do not talk about me, but more about them. I, too, was the picture of health in my new decade of 80, until I was not. Still looking for a diagnosis with good doctors. Thanks, Jeff. Eileen

REPLY
rnlorena | @rnlorena | Jul 28, 2021
In reply to @johnbishop "I started my journey with neuropathy when I was in my early 50s, with some numbness..." + (show)
@johnbishop

I started my journey with neuropathy when I was in my early 50s, with some numbness that started in my toes on both feet. I mostly ignored it because there was no pain and I really didn’t think much about it. After a few years, the numbness progressed to the bottoms of both feet and I mentioned it to my primary care doctor who said it could be nerve damage. He said they could run some tests and determine if it was nerve damage. I asked if they determine if it is nerve damage what can be done. I was surprised when he mentioned there was not any treatment that will help with numbness.

The numbness gradually increased over the years and in my early 70s the numbness had progressed to just below my knees. It was at this point that I was worried about my mobility and what the future would hold so I talked with my primary care doctor who helped me get an appointment with a neurologist. The neurologist scheduled some lab tests including an MRI, nerve conduction test and a physical exam. I was diagnosed with idiopathic small fiber peripheral neuropathy but unlike most people diagnosed with neuropathy I only had the numbness and no associated pain. I was disappointed that there was no treatment available even though I had a diagnosis but that is pretty much what my first doctor had told me 20 years ago.

After I received my diagnosis of small fiber PN I was trying every topical cream available that said it would help neuropathy with zero results. Then I found a book by Dr. Terry Wahls, The Wahls Protocol. She shared how using functional medicine and nutrient rich foods helped her treat her symptoms of multiple sclerosis and get her life back. This started my journey on looking at nutrition as a possible treatment for my neuropathy.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it is up to you to do your own research and avoid scams. Fortunately, there is a lot of information on how to avoid scams but it is out of sight, out of mind for a lot of folks. Here are the ones I have used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page:
-- https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it:
-- https://nccih.nih.gov/health/decisions

That said, I have found a protocol of supplements developed by fellow neuropathy patients that works for me and has helped others with PN get off the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was high.

You can read more about it in this discussion:

Have you tried the new Protocol 525 product for neuropathy relief? https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I have not made any more progress, but I am OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Recently I have seen some feeling return to my feet at different times during the day which gives me some hope of more progress and a new normal.

I’ve been a member of Mayo Clinic Connect since 2016. And it gives me great comfort to talk with others, share ideas and information, not only here in the Neuropathy group, but also in other groups as new health questions come up, like managing PMR, getting a knee replacement, a CPAP, etc. Ahh, the joys of aging. Hey, if you qualify ;-), you might also want to join me in this group on Connect: Aging Well. (See all 70+ Groups on Mayo Clinic Connect here: https://connect.mayoclinic.org/groups/)

What’s your neuropathy story?

Jump to this post

I did a two week holter monitor and found out yesterday what I thought was continuous palpitations that I really had sinus tachycardia. The highest heart rate was 183. I was on my way back from Montgomery to see my granddaughter off in the Army and it was in the morning when I left Montgomery to go home around 9:48am that my heart rate was high. I could tell that something was going on but I thought it was palpitations. I went to the ER last week because my heart rate was going up while I was sitting and watching TV. I am now taking a beta blocker to keep my heart rate lower for now. My cardiologist and I discussed my diagnosis of SFN and she told me that she wants me to have a stress test and a Echo to rule out that I have no blockages in my heart. I really thought I had palpitations. I have had them my whole life but not like that. I had no idea. 2 years ago I was having pains like pin prick in my epigastric and upper stomach area. I ended up going to a gastroenterologist and saw an ARNP. I was scheduled for an endoscopy and was diagnosed with silent reflux and I also have chronic gastritis and chronic esophagitis. I had no idea you could have silent. I took pantoprazole since November of 2019 and recently quit taking it. My decision. I had another endoscopy in April and I still have it. I will have to go back and discuss medications. I know that I now have osteopenia and I do not want to keep taking the pantoprazole. I also quit taking my rosuvastatin. My decision. My nurse friend sister was taking statin for 20 years and woke up one day with pain on the scale of a 9 and pains in her eyes. She stopped her statin and got better. They then started her on another statin and her pain started back. I have taking b12 and D3. Three blood draws ago I had high B12, the next one was normal, the last one was high again. I have one more test that was taken for genetics to hear the results of. I don't know if its possible that those pin prick pains I had in the epigastric area could be related to neuropathy. I am thinking my SFN may be idiopathic. I had a rheumatology panel and it was negative for those autoimmune diseases. I know there are others. I have read quite a few of others stories on here.
Question: Have other people started out with pin pricks and went on to have other issues? I am still having pin pricks and my nerve numbers are very low. This started out the first week in March of this year. Everything has been rapidly happening. I do want to pursue Mayo Clinic in Jacksonville.
Question: Is there someone at Mayo that I could talk to about getting an appt for the things I want to pursue.
After reading many stories on Mayo Clinic connect I am getting the idea that if you have idiopathic that what ever happens next will be a surprise. There is no easy answer.
I have been studying this for weeks now about SFN and also medications. I am just not sure where to start when calling Mayo. I live near Pensacola and don't mind driving over there. My cardiologist said she thought it was a good idea for me to pursue Mayo. My symptoms were full blown on the first day. I woke up and had the pin pricks all over. I see that other people who have other symptoms had a vaccination and it started. Some people start with something and it increases. From what I am seeing it depends on the person as to what is happening that day.

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 28, 2021
In reply to @rnlorena "I did a two week holter monitor and found out yesterday what I thought was continuous..." + (show)
@rnlorena

I did a two week holter monitor and found out yesterday what I thought was continuous palpitations that I really had sinus tachycardia. The highest heart rate was 183. I was on my way back from Montgomery to see my granddaughter off in the Army and it was in the morning when I left Montgomery to go home around 9:48am that my heart rate was high. I could tell that something was going on but I thought it was palpitations. I went to the ER last week because my heart rate was going up while I was sitting and watching TV. I am now taking a beta blocker to keep my heart rate lower for now. My cardiologist and I discussed my diagnosis of SFN and she told me that she wants me to have a stress test and a Echo to rule out that I have no blockages in my heart. I really thought I had palpitations. I have had them my whole life but not like that. I had no idea. 2 years ago I was having pains like pin prick in my epigastric and upper stomach area. I ended up going to a gastroenterologist and saw an ARNP. I was scheduled for an endoscopy and was diagnosed with silent reflux and I also have chronic gastritis and chronic esophagitis. I had no idea you could have silent. I took pantoprazole since November of 2019 and recently quit taking it. My decision. I had another endoscopy in April and I still have it. I will have to go back and discuss medications. I know that I now have osteopenia and I do not want to keep taking the pantoprazole. I also quit taking my rosuvastatin. My decision. My nurse friend sister was taking statin for 20 years and woke up one day with pain on the scale of a 9 and pains in her eyes. She stopped her statin and got better. They then started her on another statin and her pain started back. I have taking b12 and D3. Three blood draws ago I had high B12, the next one was normal, the last one was high again. I have one more test that was taken for genetics to hear the results of. I don't know if its possible that those pin prick pains I had in the epigastric area could be related to neuropathy. I am thinking my SFN may be idiopathic. I had a rheumatology panel and it was negative for those autoimmune diseases. I know there are others. I have read quite a few of others stories on here.
Question: Have other people started out with pin pricks and went on to have other issues? I am still having pin pricks and my nerve numbers are very low. This started out the first week in March of this year. Everything has been rapidly happening. I do want to pursue Mayo Clinic in Jacksonville.
Question: Is there someone at Mayo that I could talk to about getting an appt for the things I want to pursue.
After reading many stories on Mayo Clinic connect I am getting the idea that if you have idiopathic that what ever happens next will be a surprise. There is no easy answer.
I have been studying this for weeks now about SFN and also medications. I am just not sure where to start when calling Mayo. I live near Pensacola and don't mind driving over there. My cardiologist said she thought it was a good idea for me to pursue Mayo. My symptoms were full blown on the first day. I woke up and had the pin pricks all over. I see that other people who have other symptoms had a vaccination and it started. Some people start with something and it increases. From what I am seeing it depends on the person as to what is happening that day.

Jump to this post

@rnlorena, Since you mentioned that your cardiologist thought it was a good idea to pursue an appointment at Mayo Clinic, can you ask them if they will provide a referral to Mayo Clinic for you? Otherwise, I think you can just give them a call and do a self referral and let them know what your questions and concerns are. If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

REPLY
polywog | @polywog | Jul 29, 2021
In reply to @rnlorena "I did a two week holter monitor and found out yesterday what I thought was continuous..." + (show)
@rnlorena

I did a two week holter monitor and found out yesterday what I thought was continuous palpitations that I really had sinus tachycardia. The highest heart rate was 183. I was on my way back from Montgomery to see my granddaughter off in the Army and it was in the morning when I left Montgomery to go home around 9:48am that my heart rate was high. I could tell that something was going on but I thought it was palpitations. I went to the ER last week because my heart rate was going up while I was sitting and watching TV. I am now taking a beta blocker to keep my heart rate lower for now. My cardiologist and I discussed my diagnosis of SFN and she told me that she wants me to have a stress test and a Echo to rule out that I have no blockages in my heart. I really thought I had palpitations. I have had them my whole life but not like that. I had no idea. 2 years ago I was having pains like pin prick in my epigastric and upper stomach area. I ended up going to a gastroenterologist and saw an ARNP. I was scheduled for an endoscopy and was diagnosed with silent reflux and I also have chronic gastritis and chronic esophagitis. I had no idea you could have silent. I took pantoprazole since November of 2019 and recently quit taking it. My decision. I had another endoscopy in April and I still have it. I will have to go back and discuss medications. I know that I now have osteopenia and I do not want to keep taking the pantoprazole. I also quit taking my rosuvastatin. My decision. My nurse friend sister was taking statin for 20 years and woke up one day with pain on the scale of a 9 and pains in her eyes. She stopped her statin and got better. They then started her on another statin and her pain started back. I have taking b12 and D3. Three blood draws ago I had high B12, the next one was normal, the last one was high again. I have one more test that was taken for genetics to hear the results of. I don't know if its possible that those pin prick pains I had in the epigastric area could be related to neuropathy. I am thinking my SFN may be idiopathic. I had a rheumatology panel and it was negative for those autoimmune diseases. I know there are others. I have read quite a few of others stories on here.
Question: Have other people started out with pin pricks and went on to have other issues? I am still having pin pricks and my nerve numbers are very low. This started out the first week in March of this year. Everything has been rapidly happening. I do want to pursue Mayo Clinic in Jacksonville.
Question: Is there someone at Mayo that I could talk to about getting an appt for the things I want to pursue.
After reading many stories on Mayo Clinic connect I am getting the idea that if you have idiopathic that what ever happens next will be a surprise. There is no easy answer.
I have been studying this for weeks now about SFN and also medications. I am just not sure where to start when calling Mayo. I live near Pensacola and don't mind driving over there. My cardiologist said she thought it was a good idea for me to pursue Mayo. My symptoms were full blown on the first day. I woke up and had the pin pricks all over. I see that other people who have other symptoms had a vaccination and it started. Some people start with something and it increases. From what I am seeing it depends on the person as to what is happening that day.

Jump to this post

Hi. I am very interested in this particular topic. There’s not often discussion about the autonomic issues with small fiber neuropathy. Because it also affects the artery linings, it can cause low blood pressure and high heart rate. I’ve been hesitant to do anything about mine because I just fear more and more and more medications. So please keep us informed about whether your doctor thinks your case has anything to do with SFN. I am 65 so sometimes it’s hard to know whether things are SFN or typical issues with aging.

REPLY
paulalbert | @paulalbert | Aug 4, 2021
In reply to @johnbishop "I started my journey with neuropathy when I was in my early 50s, with some numbness..." + (show)
@johnbishop

I started my journey with neuropathy when I was in my early 50s, with some numbness that started in my toes on both feet. I mostly ignored it because there was no pain and I really didn’t think much about it. After a few years, the numbness progressed to the bottoms of both feet and I mentioned it to my primary care doctor who said it could be nerve damage. He said they could run some tests and determine if it was nerve damage. I asked if they determine if it is nerve damage what can be done. I was surprised when he mentioned there was not any treatment that will help with numbness.

The numbness gradually increased over the years and in my early 70s the numbness had progressed to just below my knees. It was at this point that I was worried about my mobility and what the future would hold so I talked with my primary care doctor who helped me get an appointment with a neurologist. The neurologist scheduled some lab tests including an MRI, nerve conduction test and a physical exam. I was diagnosed with idiopathic small fiber peripheral neuropathy but unlike most people diagnosed with neuropathy I only had the numbness and no associated pain. I was disappointed that there was no treatment available even though I had a diagnosis but that is pretty much what my first doctor had told me 20 years ago.

After I received my diagnosis of small fiber PN I was trying every topical cream available that said it would help neuropathy with zero results. Then I found a book by Dr. Terry Wahls, The Wahls Protocol. She shared how using functional medicine and nutrient rich foods helped her treat her symptoms of multiple sclerosis and get her life back. This started my journey on looking at nutrition as a possible treatment for my neuropathy.

I learned there are a bunch of companies and folks with neuropathy treatments looking to take your money and it is up to you to do your own research and avoid scams. Fortunately, there is a lot of information on how to avoid scams but it is out of sight, out of mind for a lot of folks. Here are the ones I have used:

Quazar's wonderful guidance about avoiding scams and snake oil cures:
-- https://connect.mayoclinic.org/discussion/how-to-avoid-quacks-and-snake-oil-treatments/

FDA's Health Fraud Page:
-- https://www.fda.gov/forconsumers/consumerupdates/ucm278980.htm

NIH's National Center for Complementary and Integrative Health (NCCIH) which offers guidance about integrative health and how to evaluate it:
-- https://nccih.nih.gov/health/decisions

That said, I have found a protocol of supplements developed by fellow neuropathy patients that works for me and has helped others with PN get off the pain medications. I was skeptical at first and took the list of supplements and vitamins to my doctor who shared it with the Mayo pharmacist to get his feedback on any interactions. His only comment was he thought the omega 3s in the list was high.

You can read more about it in this discussion:

Have you tried the new Protocol 525 product for neuropathy relief? https://connect.mayoclinic.org/discussion/have-you-tried-the-new-protocol-525-product-for-neuropathy-relief/

I started taking the supplements/vitamins September 2016 and by December the numbness in both legs went from just below the knees to just above the ankles. I have not made any more progress, but I am OK with it since I feel it has stopped the progression. My neurologist had told me to just watch it and let him know when it gets worse – in other words there is nothing I can do to fix it. Recently I have seen some feeling return to my feet at different times during the day which gives me some hope of more progress and a new normal.

I’ve been a member of Mayo Clinic Connect since 2016. And it gives me great comfort to talk with others, share ideas and information, not only here in the Neuropathy group, but also in other groups as new health questions come up, like managing PMR, getting a knee replacement, a CPAP, etc. Ahh, the joys of aging. Hey, if you qualify ;-), you might also want to join me in this group on Connect: Aging Well. (See all 70+ Groups on Mayo Clinic Connect here: https://connect.mayoclinic.org/groups/)

What’s your neuropathy story?

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@johnbishop thank you for your story. Question: Isn't Omega 3 just fish oil. I believe I will eventually follow some regiment like yours to see if it helps. Years'n years ago a doctor said I have pre diabetes. Then I didn't go to a doctor for anything for 10 years and went recently (last year). Doctor said I had a A1C of 14 I think it was and a blood glucose level of 290 I think. He was flabberghasted. Mind you, I'm 5'5" tall and not overweight, at about 150 lbs. So I left his office and completely cut sugar and carbs out for 3 months. When I went back my A1C was 5 and blood sugar at 30 or something. He said they've never seen that much improvement in 3 months and the neuropathy I was feeling in my toe also improved by 50%. Oh and I had started exercising in the gym at work.

But I stopped exercising and introduced some carbs and sugar into my diet and my neuropathy worsened again. I've had it for about 3 years total and the progression is obvious and the worst it's been John like you I too have back issues. I had a major back surgery at T9-10 which I've read is really rare. They normally cut a rib out permanently and temporarily remove your intestines to do a laminectomy on the thoracic vertebre to relieve pressure on the nerve. But this doctor, fancy as he was, decided to go through my back. Well guess what? At that spine level in your back EVERYTHING comes together there. Ribs, strong, fibrous latisimus dorsi muscles, carteledge... that's why they never use to go through the back. the surgery was not successul and I've been going to the pain clinic for a decade now. I recently asked for a medicine change from Norco to Tramadol. Norco wipes out the pain if you take a lot of it but it's short acting and a lot of side effects like groginess and of course addiction. So since a family member was using Tramadol I decided to ask the pain doctor for a medicine change to Tramadol. For me, that stuff works. it's not a narcotic per se although it may be listed as in that family. Along with the Gabapentin, the Tramadol actually makes the neuropathy bearable for sleeping at night As for surgeries I also had a major knee surgery some 20 years ago where the doctor cut a tendon or something by 1/3rd and stretched it across the knee cap to reposition it. Major, major surgery. It worked for the knee cap pain but regular arthritis on the joint took over and I have been limping for 20 years. Which gives a person all kinds of referred pain due to uneven gait and body usage. Combined with unrelenting back surgery pain and now, lower back pain, the neuropathy just seems to jump on the pain bandwagon and have a hey day. I'm 63 by the way. I've been a construction or factory maintenance worker my whole life and come from a family of severe arthritis sufferers. Then add it 45 years of hard labor and you get the arthritis picture. Planning to retire in 2023 and I'm sure doing things on MY terms and timeline will ease a lot of "overuse" as one doctor described my back, knee, and body. Well you're welcome America, as I've "overused" my body to build steel mills, power plants, oil refineries, hospitals, schools, homes, and factories. I mention this because I view it as "building America" for all of us and that has inspired me to go past the "handicapped" status like most of my family has been. Not one to collect unemployment or disability, they'll have to peel me off the factory floor before I would quit early. So I've done some if not all of this to myself, for Family, Country, and God.

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