Neuropathy: Numbness only, no pain

Posted by John, Volunteer Mentor @johnbishop, Sep 10, 2020

When I was first diagnosed with idiopathic small fiber peripheral neuropathy and numbness was my only symptom, my neurologist told me that I am one of the "lucky" few who didn't also have pain and other associated symptoms of neuropathy. I knew there were others out there but yesterday I met my first member on Connect who has a similar diagnosis. I want to thank that member for joining Mayo Clinic Connect and sending me a private message that I would like to answer here to start this discussion.

Hello @afirefly, Welcome to Connect. You mentioned being diagnosed with large fiber demyelinating predominately sensory peripheral neuropathy at Mayo Clinic. The neurologist's recommendation was exercise and balance exercises. Your symptoms are less than one year and are primarily progressive loss of sensation in your hands and feet. You also said aside from occasional muscle cramps in your calves and dyesthesias in hands and feet, you experience little discomfort. Your greatest concern now is the degree of disability you will have as the numbness progresses.

I can tell you that we think a lot alike. When I walked out of the neurologists office with similar symptoms of just numbness in the feet and lower legs with no pain – and no recommendations for treatment, I was pretty down. I was told to let them know as the condition progressed and my biggest fear at the time was not being able to drive myself. That's when I started doing my own research and found Mayo Clinic Connect after being diagnosed with idiopathic small fiber PN.

You have some really good and thoughtful questions which I will try to answer the best I can.

Question: Although you have improved on the Protocol, did you ever have complete loss of sensation in your feet? I ask because I truly dread the possibility of total sensory loss in my feet.

Answer: I never had a complete loss of sensation in my feet. At the worst, they felt numb and sometimes tingly but not painful, just uncomfortable. They mostly always feel cold and after being diagnosed with lymphedema I have to wear compression socks which doesn't help the numbness feeling. I have noticed that it seems like I've had some feeling returning ever so often when I'm exercising on my crossfit exercise bike. I use it several times a day for 30 to 45 minutes when I can to build up leg and arm strength. I recently purchased a device called a Sand Dune Stepper to work on my balance issues. I do think it helps and I've noticed a little more feeling in the bottom of my feet – if that makes sense for numb feet. Website – https://www.sanddunestepper.com/
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Question: Assuming you have little or no sensation in your toes and the soles of your feet, are you still able to drive a car?
If yes, would you kindly tell me what maneuvers/measures you have used over the years to compensate for the absence of feeling in your feet while driving?

Answer: I am still able to drive a car. The numbness was always a concern in my mind but never kept me from feeling the pressure of placing my feet on the pedals and pushing them down or letting them up.
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Question: Assuming you have little or no sensation in your toes and the soles of your feet, how difficult is it for you to walk? Before my neuropathy, if my foot was in a position too long it would "go to sleep" from lack of circulation to the nerves. The sensation would return seconds later once I changed my foot position. However, I don't believe I would have been able to walk on that sleeping foot until the circulation had been restored. Please tell me if there are/were any maneuvers/measures you have used over the years to compensate for the absence of feeling in your feet while walking.

Answer: When I was in my late 40s, my wife would sometimes tell me that I walk like an old man and now I am one and still walking the same. I've always been slow getting up and slow to take the first steps when walking. I guess I would call it trying to be careful because I wasn't sure of my footing. I think recognizing that your feet may not be as steady is a good thing and keeps you alert when walking. I struggle with walking any distance due to lower back issues. I recently had some physical therapy to learn some back and stomach muscle strengthing exercises which has helped some. Now I just have to execute a plan to do them often.
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Question: You indicated that the cost of the old Protocol was under $10/day (prior to 525 Protocol) several years ago and that the current 525 Protocol is $6.44/day. Does that mean Protocol 525 these days costs somewhat less than the old (original) Protocol?

Answer: Each item in the original protocol lasted a different number of days so the cost was more spread out and roughly calculated at under $10/day. The new 525 Protocol is a 30 day supply for $6.44/day ($193.20). It's also fewer pills to swallow which I really like. The Ramp up version is different due to the R-ALA in the regular 30 day supply. The daily R-ALA dosage is 1200 mg which causes some people to have stomach problems so the ramp up is to gradually increase the dosage to get use to the higher amount. I never had an issue because I was already taking supplements for the PN from my research and was taking that amount of ALA before I found the original protocol. Related 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/
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Question: Do you use orthotics or inserts in your shoes? Special shoes?

Answer: I've tried some orthotics and different inserts but don't always use them. I found some felt/wool inserts that I like during the winter time as an extra cushion. I do like Sketchers because of the memory foam cushion and comfort. I used to wear the canvas shell ones but my neurologist told me it would be best to wear shoes with good side support for walking. So, I try to choose slip-ons with good side support made out of leather. There is another discussion on Connect you might find helpful for shoes – If the shoe fits…right?: https://connect.mayoclinic.org/discussion/if-the-shoe-fits-right/
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Question: Besides daily foot exams, lotion to your feet, and avoiding barefoot walking, are there any other measures you use to protect your numb feet?

Answer: For me, this all started with a trip to the ER after waking up one night to go to the bathroom and when reaching the bathroom seeing blood all over the floor and trying to figure out where it's coming from. Surprised was I to see it pumping in a small stream from my ankle. Long story short, I unconciously rubbed my feet during the night and I had a hang nail on my big toe which tore the skin and part of a vein close to the surface. After that episode, I always wear white short loose socks to bed and I apply lotion to my feet and legs to keep them moisturized. I think that also helps with the healing process when you think that there are tiny sensory nerves just under the skin and it helps to keep the skin moist to protect them.

Hope this helps…let me know if I missed anything or if you have any other questions. We have a great group of members with a lot of experience here on Connect.

John

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

@patc55

John, I was diagnosed by Dr. John England who is the head of the LSU School of Medicine Neurology in New Orleans, Louisiana. Dr. England did extensive testing before rendering my diagnosis. He could not put his finger on a cause or remedy at the time. I guess what I am looking for is someone who can help figure this out. I understand that no one may ever be able to figure it out. I saw a video of a neurologist in Austin Texas who i was very impressed with only to learn that their clinic only treats people who are Texas residents. Do the Mayo Clinic have any part of their clinic that would specialize in diagnosing causes of SFPN ? Thank very much for responding.

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@patc55, You mentioned you only feel it when you are standing and it feels like you are walking on rocks. Do you feel pain when walking or on your feet? Just wondering if Morton's Neuroma may be a possibility. Normally it's a painful condition but I did find the following information that mentions pain is not always present.

"Sometimes you may have Morton's neuroma without any symptoms. A small study from 2000 reviewed medical records from 85 people who had their feet imaged with magnetic resonance imaging (MRI). The study found that 33 percent of the participants had Morton's neuroma but no pain. Jan 22, 2018" - Morton's Neuroma: Causes, Treatment, and More: https://www.healthline.com/health/mortons-neuroma

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@patc55

John, I was diagnosed by Dr. John England who is the head of the LSU School of Medicine Neurology in New Orleans, Louisiana. Dr. England did extensive testing before rendering my diagnosis. He could not put his finger on a cause or remedy at the time. I guess what I am looking for is someone who can help figure this out. I understand that no one may ever be able to figure it out. I saw a video of a neurologist in Austin Texas who i was very impressed with only to learn that their clinic only treats people who are Texas residents. Do the Mayo Clinic have any part of their clinic that would specialize in diagnosing causes of SFPN ? Thank very much for responding.

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I was in an exactly the same situation as you, until I phoned one of my sons, aged 65. As I started to bring him up to date on my condition, he interrupted my conversation, saying “ sorry dad, I didn’t want to worry you but, I have just been diagnosed , that I also have peripheral neuropathy “. So , there you are, my cause and his is hereditary. After much research I have opted for treatment via Neuroplasticity. I am now aged 90, on nil medication of any form, and my condition IS improving on a weekly basis. I am not just looking improvement , but a CURE. My Specialist Neurologist said, of cure,” it is possible, but will be extremely hard work to achieve “. I’ll settle for that. Best wishes from Australia.

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@user_che214927

I was in an exactly the same situation as you, until I phoned one of my sons, aged 65. As I started to bring him up to date on my condition, he interrupted my conversation, saying “ sorry dad, I didn’t want to worry you but, I have just been diagnosed , that I also have peripheral neuropathy “. So , there you are, my cause and his is hereditary. After much research I have opted for treatment via Neuroplasticity. I am now aged 90, on nil medication of any form, and my condition IS improving on a weekly basis. I am not just looking improvement , but a CURE. My Specialist Neurologist said, of cure,” it is possible, but will be extremely hard work to achieve “. I’ll settle for that. Best wishes from Australia.

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You and I are of like minds. What is neuroplasty, not plastic surgery I hope.

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@hcuo

You and I are of like minds. What is neuroplasty, not plastic surgery I hope.

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I like to put a face with a discussion. You look like a tough, no beat about the bush bloke. I Neuroplasticity has nothing to do with surgery, medicine , or any form of tablets etc. I have sent many , many comments for discussion on Neuroplasticity. Just dial my name into this Mayo Connect , they will be there for you to read and assess. I just don't want temporary relief, I want a cure. Best wishes from Australia mate!

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@johnbishop

Hi @patc55, Welcome to Mayo Clinic Connect. I have SFPN which started in the toes in both feet more than 20 years ago. I don't have pain with mine either but like you it's more of a discomfort. I also have advanced degenerative arthritis in my left knee and had a knee replacement done for my right knee in 2019. There is some evidence linking SFPN and autoimmune diseases.

"Systemic autoimmune conditions linked to SFPN include lupus, rheumatoid arthritis, sarcoidosis, vasculitis and celiac. Sjögren's is the most common among these Virtually nothing is known about how systemic autoimmune diseases affect small fibers. Nov 3, 2017"
- IVIg for apparently autoimmune small-fiber polyneuropathy: first analysis of efficacy and safety: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791555/

If you are looking for more information to learn more about your diagnosis, here are a couple of websites I have found helpful:
- Neuropathy Commons: https://neuropathycommons.org/
- The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Were you diagnosed by a neurologist? Just wondering if they gave you a specific diagnosis or did they just say it was idiopathic SFPN which is my diagnosis.

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I had discomfort in my feet for a number of years. Numbness on the bottom, stiff, swelled feeling. I kept asking my doctor about it and she said it was probably high arches and “to get better shoes.” Had she actually looked at all my symptoms I had together, including, anemia (even though I took lots of iron) and constant itching (diagnosed as “dried skin”), and then sent me to get a blood test, she would have found I had Primary Biliary Cholangitis, an autoimmune disease. Finally, in June 2019, I was having severe pain on both sides of my abdomen and got that blood. I was diagnosed with PBC, which having been undiagnosed for years, had led to stage 3 liver cirrhosis.

I am alive due to a liver transplant, which certainly is a blessing, although my feet have gotten much worse and painful. I also now have increasing numbness in my right leg, occasional sharp nerve pain in my legs, and sore joints, which started after the transplant. My doctors believe it is probably due to the anti rejection medication.

My summation: the body is amazing, but can also be extremely weird. And, if you don’t agree with your doctor, don’t wait for a better answer! Find another one and insist on a comprehensive blood test.

Also, I just want to say I am so grateful to all of you for sharing your experiences and insights. I have gained so much from this and the resources you share.

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@hcuo

You and I are of like minds. What is neuroplasty, not plastic surgery I hope.

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@hcuo
You asked about the definition of neuroplasty. Here is some information from the National Institutes of Health website, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3324743/.

As you can see, it is not the same as plastic surgery.

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Hi @hopeful33250 the post was referring to neuroplasticity and NOT neuroplasty. Those are 2 different things. Neuroplasty has to do with surgery. Neuroplasticity does not involve any surgery. Thanks for trying. Toni

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@johnbishop

@avmcbellar @helennicola, I used to have a combination elliptical and exercise bike and upgraded to a Teeter FreeStep Recumbent Cross Trainer that gives you both lower body and upper body exercise. It's one of the best investments I've made in a long time. About a month ago I decided to focus more on core body strength and bought their FitForm Strength Trainer that lets you work on pretty much all of your muscle groups. They have great videos you can watch online with an iPad or mobile device to walk you through each of the different exercises.

FreeStep - https://teeter.com/freestep/ (I got the cheaper one and really like it)
FitForm - https://teeter.com/fitform/

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Hi @helennicola and @fiesty76 Both exercise machines @johnbishop recommended offered great exercise alternatives. With my balance issues, the Free Step would be more accommodating and easier to use. While the Fit Form is compact I think it would require more effort in using it. For now, I think I will take baby steps( giggle ) and consider the Sunny Health & Fitness manual treadmill instead. It only has one incline setting but that is ok with me. I can always progress to the Free Step later. I found the manual treadmill on Amazon for a reduced price of $151.99 which includes shipping. It is compact unlike the Free Step. I currently use a Sunny Health & Fitness product and feel comfortable in purchasing their treadmill. Below is the video for the SF T1407M treadmill:

https://youtu.be/Y4VW9usQG98

Hope this helps. Toni

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@avmcbellar

Hi @helennicola and @fiesty76 Both exercise machines @johnbishop recommended offered great exercise alternatives. With my balance issues, the Free Step would be more accommodating and easier to use. While the Fit Form is compact I think it would require more effort in using it. For now, I think I will take baby steps( giggle ) and consider the Sunny Health & Fitness manual treadmill instead. It only has one incline setting but that is ok with me. I can always progress to the Free Step later. I found the manual treadmill on Amazon for a reduced price of $151.99 which includes shipping. It is compact unlike the Free Step. I currently use a Sunny Health & Fitness product and feel comfortable in purchasing their treadmill. Below is the video for the SF T1407M treadmill:

https://youtu.be/Y4VW9usQG98

Hope this helps. Toni

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Hi Toni, thanks so much for your input, your choice sounds like the perfect solution for you. Our club has a fitness center which we are now more comfortable attending and also are considering a possible move in the not too distant future so for now I am no longer in need. Happy treadmilling!!! Helen

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@helennicola

Hi Toni, thanks so much for your input, your choice sounds like the perfect solution for you. Our club has a fitness center which we are now more comfortable attending and also are considering a possible move in the not too distant future so for now I am no longer in need. Happy treadmilling!!! Helen

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Your’re welcome Helen! @helennicola. If too would first use the club fitness center before making any purchases especially if moving soon. You can try the different machines to see what works best for you. Thanks, the simple treadmill will be easier on me because I can do many short term walks during the day in my own living room. Best wishes. Toni

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