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.

@johnbishop Hi John what is the cause of cold feet all the time I have socks on its 85 out .I'd this part of neuropathy symptoms Can't get a hold of Dr so Dr John what do you think?

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@lioness

@johnbishop Hi John what is the cause of cold feet all the time I have socks on its 85 out .I'd this part of neuropathy symptoms Can't get a hold of Dr so Dr John what do you think?

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Hi @lioness, maybe a Dr. Suess 🙂 who knows how to use searches to find information. Only a doctor can maybe give you a specific cause of cold feet if they can pin down a diagnosis. Poor circulation along with some underlying conditions are possible causes - Cold Feet: https://www.foothealthfacts.org/conditions/cold-feet.

I wear socks to bed. My wife doesn't like cold feet either 😂

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@johnbishop I've been waiting for weeks for a referral but guess I,ll have to keep after Dr for one Yes my husband was so warm he kept my feet warm I take medicine for circulation

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@lioness

@johnbishop Hi John what is the cause of cold feet all the time I have socks on its 85 out .I'd this part of neuropathy symptoms Can't get a hold of Dr so Dr John what do you think?

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Hello @lioness and @johnbishop, just wanted to ask if you have the same problem with your hands and fingers? I have Raynaud's disease and my fingers and toes are so cold they hurt! Also, they can blanch and turn Pure White in places and then after that, a very dark blue and almost blackish looking. Best fix for that is to get them in some warm or other safe type of heat water for a while.

I have to wear gloves all day and even then when I'm immobile, which is a lot, they are wrapped inside my rolled up heating pad.

A rheumatologist can diagnosis you. I also have to wear socks and/ or have my feet underneath my winter weight down comforter at all times when immobile.

I am sorry to hear about your problem and hope you get diagnosed and that some heat can help you when you are able.

Warmest regards, Sunnyflower. 😊

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@sunnyflower

Hello @lioness and @johnbishop, just wanted to ask if you have the same problem with your hands and fingers? I have Raynaud's disease and my fingers and toes are so cold they hurt! Also, they can blanch and turn Pure White in places and then after that, a very dark blue and almost blackish looking. Best fix for that is to get them in some warm or other safe type of heat water for a while.

I have to wear gloves all day and even then when I'm immobile, which is a lot, they are wrapped inside my rolled up heating pad.

A rheumatologist can diagnosis you. I also have to wear socks and/ or have my feet underneath my winter weight down comforter at all times when immobile.

I am sorry to hear about your problem and hope you get diagnosed and that some heat can help you when you are able.

Warmest regards, Sunnyflower. 😊

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I just have a slight pain/stiffness in my fingers but it's not constant and I'm sure it has to do with carpal tunnel syndrome in my case.

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@jesfactsmon

@fiesty76 You mention feeling that your symptoms were trite compared to others. But you are such a valued member with very insightful contributions. These are a help to others. My purpose is to help my wife with any info I can learn here as well as be of service any way I can to others here. To me there is no other point. I am happy John started this discussion for you and others who have numbness but no pain. Best to you, Hank

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Hello @fiesty76, @johnbishop, I saw this post and just wanted to repeat something I shared some time back that I do not know if you saw.

I once saw a very wise therapist showed me that minimizing my own circumstance was counterproductive to my well-being and mental health.

We all walk through many fires here on Earth in this lifetime. We all have different human endurance thresholds and mental health thresholds.

Most often, while we are thinking someone else's hardships are much worse than our own, they are thinking the same thing; that hours are worse than theirs.

The only thing that works for me is that I know and trust God cares deeply about the details in my/our life/s and that He has a higher purpose in them.

Also knowing and experiencing His ever presence and immeasurable, vast, boundless, sacrificial, unmerrited, deep love for me/us brings me a lot of comfort and His peace through Christ that surpasses all human understanding, Philippians 4:7.

Not to mention the promises we have in eternal life, among which is a new body-Philippians 3:21 and no more tears- Revelation 3:24 ""And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away.-" blessed be the Lord... According to all that He promised; not one word has failed of all His good promise" . 1st Kings 8:56. I can't wait!!

I hope you have a special weekend. I care deeply about your well-being. Sunnyflower 😊

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@johnbishop

I just have a slight pain/stiffness in my fingers but it's not constant and I'm sure it has to do with carpal tunnel syndrome in my case.

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John, I hope this doesn’t interfere with your use of the keyboard🙁! Toni

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@johnbishop

Hi @afirefly, I haven't talked with my neurologist since my diagnosis in 2016. I think my balance issues could be related to several autoimmune conditions but if I had to make a non medically educated guess, I think it's mostly due to degenerative arthritis in my lower spine and the fact that I have difficulty walking any distance due to leaning forward but not quite as bad as Camptocormia (bent spine syndrome). I've been doing PT exercises to improve my posture and strengthen the lower back but probably not as much as I should be doing. I'm a work in progress 🙂 Here's some more info on balance issues - 5 most common balance problems seniors experience: https://www.sunriseseniorliving.com/blog/september-2017/5-most-common-balance-problems-seniors-experience.aspx

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To John, Barry, and others who are actively trying to reverse some of their neuropathy symptoms, I would like to recommend a book that I bought on Amazon.com last week. It is called, "Better Balance-Simple exercises to improve stability and prevent falls." The book is easy reading and only 50 pages. It is a Harvard Medical School Special Health Report. The lead editor is Dr Suzanne Salamon.

While many of our neuropathies are not curable, our nervous system, as Barry pointed out, has some degree of plasticity.
Balance is an area where there is plasticity--where we can compensate for something our neuropathy took away. The short book, written for the layperson, discusses the organs that determine balance. It discusses common causes of imbalance. And it gives many exercises that can be done to improve balance. Price is $20. Money well-spent in my opinion.

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@afirefly

To John, Barry, and others who are actively trying to reverse some of their neuropathy symptoms, I would like to recommend a book that I bought on Amazon.com last week. It is called, "Better Balance-Simple exercises to improve stability and prevent falls." The book is easy reading and only 50 pages. It is a Harvard Medical School Special Health Report. The lead editor is Dr Suzanne Salamon.

While many of our neuropathies are not curable, our nervous system, as Barry pointed out, has some degree of plasticity.
Balance is an area where there is plasticity--where we can compensate for something our neuropathy took away. The short book, written for the layperson, discusses the organs that determine balance. It discusses common causes of imbalance. And it gives many exercises that can be done to improve balance. Price is $20. Money well-spent in my opinion.

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Hi @afirefly Is this book relatively new with up to date information? I believe in neuroplasticity. It engages the brain to develop new pathways for tasks it once did. In other words, you teach your brain to do a task using a different pathway of nerves it used before. Pretty interesting concept. I must say it involves discipline, time, and patience. In some cases it took as long as a year to achieve change. I am using neuroplasticity to correct my diplopia caused by the nerves of my eye muscles. The movements of the eyes do not synchronize with each other thus resulting in 2 images, the diplopia. At 3 months I have seen positive changes but my eyes have not completely aligned yet. I also have neuropathy and balance issues. I have noticed yesterday after a month, the exercises for balance are becoming easier. I will advance to another exercise for balance improvement. Thanks, Toni

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Hi Toni, and congratulations on yor level of Neuroplasticity practice. . If you are referring to books authored by Dr Norman Doidge , then the information is right up to date. I have spent many long hours, researching, double checking etc., and am acting on Doidge's findings to the enth degree. The aim being to rewire the brain, and creating new neurons. Changing habits is the main stimulent for change. I sent a comment a couple of months ago on the changes I have made , and since then there are others.Like you , I can see and feel changes, though small, BUT DEFINATE.. However I think your time expectancy is a bit short, for a complete, close to it result, butthe improvements will be evident. I expect to recover completely, and am thinking approx 2 years for me at age 92.. All of the activities we take are to change the brain, we must believe it will happen , with passion, or it will not happen . For most the ultime exercise is belief. Best wishes from down under Australia.

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