Neuropathy: Numbness only, no pain

Posted by John, Volunteer Mentor @johnbishop, Sep 10 8:15am

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

@johnbishop @afirefly
It is a wonderful thing to find someone to share your boat with. Glad you each have found a compatriot. And who knows John, now that you have started this discussion, someone else may turn up with a similar condition. Then you can start your own club! 😊 Best, Hank

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@johnbishop @jesfactsmon I whole heartedly agree with this statement Hank. I feel happy for you John and @firefly. Comfort in numbers and hopefully more will connect with you going forward.

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I'd like to add a little to John's (@johnbishop) reply. I'm also lucky enough to be pain-free, dealing with hereditary polyneuropathy that's getting worse with time. I walk barefoot at home so my toes get some natural exercise — shoes constrict! When I do wear shoes they're either sandals or flexible "sneakers" with a wide toe box: e.g., Merrell Vapor Gloves or Lem's (lemsshoes.com) — expensive but last forever. I do lots of other stuff all day, probably have every exercise gizmo known to (wo)man, tho still don't have a home exercise bike like John B. (I live in a retirement community with a fitness center that's been closed since March. Fingers crossed that it will open in a few months.) Speaking of fingers, my hands are getting weaker and more numb, my wrists are prone to tendonitis, so I've started exercising my arms and shoulders too. The idea is to keep moving, even tho it can be exhausting. Best advice from my PT: whenever you think of it — whether standing, sitting or lying down — clench your buttocks for five seconds. You can't just think about your feet and hands, you have to consider the source: legs, arms, shoulders, buttocks and spine. And best of luck!

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@stefspad

I'd like to add a little to John's (@johnbishop) reply. I'm also lucky enough to be pain-free, dealing with hereditary polyneuropathy that's getting worse with time. I walk barefoot at home so my toes get some natural exercise — shoes constrict! When I do wear shoes they're either sandals or flexible "sneakers" with a wide toe box: e.g., Merrell Vapor Gloves or Lem's (lemsshoes.com) — expensive but last forever. I do lots of other stuff all day, probably have every exercise gizmo known to (wo)man, tho still don't have a home exercise bike like John B. (I live in a retirement community with a fitness center that's been closed since March. Fingers crossed that it will open in a few months.) Speaking of fingers, my hands are getting weaker and more numb, my wrists are prone to tendonitis, so I've started exercising my arms and shoulders too. The idea is to keep moving, even tho it can be exhausting. Best advice from my PT: whenever you think of it — whether standing, sitting or lying down — clench your buttocks for five seconds. You can't just think about your feet and hands, you have to consider the source: legs, arms, shoulders, buttocks and spine. And best of luck!

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Experience numbness in hands and feet there is pain that may be from the arthritis. Along with the numbmess is the frigid temperature in the hands. Rice bags and Therabead mittens.
Any other suggestions?

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@cnn

Experience numbness in hands and feet there is pain that may be from the arthritis. Along with the numbmess is the frigid temperature in the hands. Rice bags and Therabead mittens.
Any other suggestions?

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@cnn It's close to that season here in Minnesota when I have to break all the cold gear. I don't have much neuropathy related numbness but I do have carpal tunnel syndrome which sometimes causes my hands to be a little numb or painful. When I'm clearing the snow from my driveway my hands get numb from the cold very fast. I never could find good enough mittens or gloves that would let me stay out in the cold more than about 30 minutes max when blowing snow. Last year I finally found a set of mittens with a small pocket in the back of the hand and I put one of those hand warmer packets in them and it does a pretty good job. I wished I could find something a little better with the pocket in the palm of the hand which is where it bothers me the most.

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Thank you for the reply. My hands are cold at room temperature. Had Carpal Tunnel procedure 10 years ago which helped for a while but numbness and cold become progressively worse. Much of this could be the aging process as i have lived 9 decades. So a cure is not expected just some day to day relief.

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@cnn

Thank you for the reply. My hands are cold at room temperature. Had Carpal Tunnel procedure 10 years ago which helped for a while but numbness and cold become progressively worse. Much of this could be the aging process as i have lived 9 decades. So a cure is not expected just some day to day relief.

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@cnn That pretty much sums neuropathy up, no cure and only treatments to help with the symptoms. I take supplements to give the nerves what they need to heal themselves at a cellular level…whether that really happens is another question. I do that more with hope that it's slowing or stopping the inevitable progression and so far I feel pretty good that it has in my case.

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Wow, woy, wow! What an incredible amount of food for thought here! What excellent questions and answers!

Many years ago the soles of my feet began to feel spongy and I couldn't really feel anything I was walking on very well. I remember at the time I had not been diagnosed yet with neuropathy. The guy who did my pedicures said I was putting too much lotion on them and that was the cause.

Years later I have a wicked case of neuropathy head to toe and an awful lot of numbness on my body. Some places more than ever. I cannot feel that I'm wet when inside of a swimming pool! I can feel some pressure and temperature. Besides the numbness is the typical agonizing unrelenting burning and stinging.

When I met my husband I notice there were blood stains all over his carpet. He had had a tack in his foot and didn't know it. He has been insulin-dependent since childhood and has no feeling in his feet and other places.

Thank you for such a scholarly discussion. I had never thought that I may not be able to drive some day because of this. Besides the neuropathy in my feet I also have Raynaud's disease so my hands and feet are icy cold while burning at the same time, sort of like what liquid nitrogen does. So cold that it's hot and burns/stings.

Thank you for sharing and take really good care of yourselves. I wish all the best for you, Sunny flower

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@sunnyflower

Wow, woy, wow! What an incredible amount of food for thought here! What excellent questions and answers!

Many years ago the soles of my feet began to feel spongy and I couldn't really feel anything I was walking on very well. I remember at the time I had not been diagnosed yet with neuropathy. The guy who did my pedicures said I was putting too much lotion on them and that was the cause.

Years later I have a wicked case of neuropathy head to toe and an awful lot of numbness on my body. Some places more than ever. I cannot feel that I'm wet when inside of a swimming pool! I can feel some pressure and temperature. Besides the numbness is the typical agonizing unrelenting burning and stinging.

When I met my husband I notice there were blood stains all over his carpet. He had had a tack in his foot and didn't know it. He has been insulin-dependent since childhood and has no feeling in his feet and other places.

Thank you for such a scholarly discussion. I had never thought that I may not be able to drive some day because of this. Besides the neuropathy in my feet I also have Raynaud's disease so my hands and feet are icy cold while burning at the same time, sort of like what liquid nitrogen does. So cold that it's hot and burns/stings.

Thank you for sharing and take really good care of yourselves. I wish all the best for you, Sunny flower

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@sunnyflower
Oh Sunny, you are the poster child for neuropathy. But the crazy thing is I could say that about so many people here. Every time I think I have heard it all someone else pops up with a set of symptoms that would send anyone hearing about them to the nearest liquor bottle. I am SO SAD for your condition. Or conditions, your numerous set of them. I send love to you my dear. It's frustrating to have to say that and leave it there. Hank

Liked by sunnyflower

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@cnn

Experience numbness in hands and feet there is pain that may be from the arthritis. Along with the numbmess is the frigid temperature in the hands. Rice bags and Therabead mittens.
Any other suggestions?

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My PT suggested clenching my fists for five seconds then letting go, easy to do when you’re watching TV or whatever. It supposedly brings blood to your hands. Also try just rubbing your hands together, like wringing them, or waving them around. Hope this helps.

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@stefspad

My PT suggested clenching my fists for five seconds then letting go, easy to do when you’re watching TV or whatever. It supposedly brings blood to your hands. Also try just rubbing your hands together, like wringing them, or waving them around. Hope this helps.

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Hi @stefspad, thanks for sharing! Any movement will aid with the circulation. Unfortunately, I have more trouble with that when sleeping. I often wake up from cold limbs( hands and feet) having “pins and needles” feeling. Movement does help me. Wish you well! Toni

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@jesfactsmon

@sunnyflower
Oh Sunny, you are the poster child for neuropathy. But the crazy thing is I could say that about so many people here. Every time I think I have heard it all someone else pops up with a set of symptoms that would send anyone hearing about them to the nearest liquor bottle. I am SO SAD for your condition. Or conditions, your numerous set of them. I send love to you my dear. It's frustrating to have to say that and leave it there. Hank

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Hank, please don't be sad. I 'm the most blessed person I know. Yes, it's beyond hard to suffer so much pain (understatement) but I KNOW God well enough to know that He is present every second of my life and I trust Him in my situation implicitly.
Sunnyflower

Liked by patrick17, HankB

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Thank you John for your lengthy and thoughtful reply to my questions and for starting a Neuropathy Numbness subgroup. The large response to this new subgroup suggests the subgroup will be relevant to many. Your posting and that of others suggest exercising the muscles within the numb area will temporarlly reduce the numbness. Conversely, in my experience, static pressure on a portion of my foot or fingers seems to temporarily worsen the numbness. You mention doing balancing exercises. Does your neurologist believe your small fiber neuropathy is contributing to your imbalance?
Imbalance is certainly a symptom of a large fiber sensory neuropathy.

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@johnbishop, I can not find the words to express how happy I am that you started this subgroup and to heartily thank @firefly for posting excellent questions privately which prompted you to start this sub group! My cardiologist referred me to my neurologist because of numbness in my feet. The neuro ordered extensive blood and urine tests. I then was tested with the electrodes and pin pricks and told I had peripheral neuropathy and he ordered the diabetes test because tests conducted revealed no definitive cause for the PN. That test revealed prediabetes. On my second visit, I was prescribed Metanx, which I believe is a vitamin supplement.

I've been following the neuropathy group closely but while others mentioned numbness, nearly all also write of pain which I don't have, just the numbness and tingling which are advancing up toward the knees. Now I am beginning to experience some numbness in my hands but again no pain. As others shared the specific types of neuropathy they'd been diagnosed with, I have continued to wonder why I haven't been told more specifics. No mention of small fiber or large fiber or other so I have no clue but will ask at my next annual appointment.

I have had many of the same questions and concerns that @firefly mentioned. The neuro told me that this is a slowly progressing disease and when asked if p.t., water therapy, acupuncture or specific exercises could help stimulate the nerves or slow down the advance, I was told there was no effective treatment. It is a relief to learn that others diagnosed with neuropathy experience symptoms like mine. I have been feeling like an odd ball in the original group and felt like questions about fear of the loss of ability to drive or type or increasing issues with balance or the coldness I've had for years in both hands and feet were trite in contrast to what so many members were challenged with. I've seen Protocal mentioned in the other group but don't know what that is. Is it a medication or process one follows in trying to maintain the level of function? My sincere thanks for starting this sub-group.

Also haven't received daily digest or new posts for 2 days and hoping there isn't another computer glitch on my end? Nothing in spam folder. I got to this thread by opening an earlier post.

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@fiesty76

@johnbishop, I can not find the words to express how happy I am that you started this subgroup and to heartily thank @firefly for posting excellent questions privately which prompted you to start this sub group! My cardiologist referred me to my neurologist because of numbness in my feet. The neuro ordered extensive blood and urine tests. I then was tested with the electrodes and pin pricks and told I had peripheral neuropathy and he ordered the diabetes test because tests conducted revealed no definitive cause for the PN. That test revealed prediabetes. On my second visit, I was prescribed Metanx, which I believe is a vitamin supplement.

I've been following the neuropathy group closely but while others mentioned numbness, nearly all also write of pain which I don't have, just the numbness and tingling which are advancing up toward the knees. Now I am beginning to experience some numbness in my hands but again no pain. As others shared the specific types of neuropathy they'd been diagnosed with, I have continued to wonder why I haven't been told more specifics. No mention of small fiber or large fiber or other so I have no clue but will ask at my next annual appointment.

I have had many of the same questions and concerns that @firefly mentioned. The neuro told me that this is a slowly progressing disease and when asked if p.t., water therapy, acupuncture or specific exercises could help stimulate the nerves or slow down the advance, I was told there was no effective treatment. It is a relief to learn that others diagnosed with neuropathy experience symptoms like mine. I have been feeling like an odd ball in the original group and felt like questions about fear of the loss of ability to drive or type or increasing issues with balance or the coldness I've had for years in both hands and feet were trite in contrast to what so many members were challenged with. I've seen Protocal mentioned in the other group but don't know what that is. Is it a medication or process one follows in trying to maintain the level of function? My sincere thanks for starting this sub-group.

Also haven't received daily digest or new posts for 2 days and hoping there isn't another computer glitch on my end? Nothing in spam folder. I got to this thread by opening an earlier post.

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@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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