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.

I have SFN with no known cause. Much numbness and tingling. Exercise definitely helps. Massage, Vick's Vapor Rub, and my Birkenstocks take/keep the "edge" off. What works for me may drive someone else crazy. Don't be afraid to experiment and see if anything helps you.

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Hello ~ I have no pain but extreme tingling/tightness of my feet that walking is difficult. Since Gabapentin and Pregabalin both treat pain I'm not getting much in the way of relief. Anyone else in the same boat and what are you doing for relief?

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@twobrooklyn

Deep tissue massage helps a bunch. Twice a day,

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Hi where do you get this message? At a spa or someone at your home? I have no one here at home to do this, but would love to try this. How well does this help for the numbness? Thanks Angie P.

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My symptoms started about 5 years ago with cold feet. Over the course of about 2 years, slowly, I began to experience a bit of tingling and some minor numbness.
At that point I saw a neurologist who conducted an EMG/NCS and concluded I have SFSN/Idiopathic.
She indicated there is no treatment and to return in about a year.
COVID arrived and it was about 2 years until I sought a second opinion.
Neurologist number 2 conducted the EMG/NCS again and indicated I actually have CIDP. She ordered a slew of blood tests. No specific cause was discovered so I am under treatment for an autoimmune issue (Ivig infusions).
To date I do not experience true pain.
My symptoms are predominantly numbness in the balls of my feet and "stocking syndrome" that is slowly working it's way up my legs and us now approaching my knees.
My toes still feel very cold and I am experiencing minor discomfort that borders upon pain in my large toes.
I am currently undergoing my fifth (of six) round of Ivig.
Based upon my sensations my doctor believes Ivig, likely, is not working.
When I complete all six she will repeat the EMG/NCS and compare it to the one she did prior to Ivig.
I consider myself extremely fortunate not to experience the pain, to date, that so many relate.
Assuming Ivig is deemed to be of no benefit, my doctor has no further treatment options.
(I have neurologist number three lined up already; one who treats and is involved in research as well).
Neurologist #2 and I have discussed pain management for the future, as needed.
When we discuss pain management, we speak in terms of "when the time comes"; never "if the time comes".

I find it interesting to read of others who are experiencing "numbness only/no pain" neuropathy.

REPLY
@retired123

Hello ~ I have no pain but extreme tingling/tightness of my feet that walking is difficult. Since Gabapentin and Pregabalin both treat pain I'm not getting much in the way of relief. Anyone else in the same boat and what are you doing for relief?

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Useing Apple Cider vinegar its a cure all for many things and also honey works can not take perscriptions well

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@sarac1935

I have the same issues

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Welcome @sarac1935, Did you mean you have the same issues or symptoms as @davehayward1? Have you been diagnosed with neuropathy?

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@davehayward1

My symptoms started about 5 years ago with cold feet. Over the course of about 2 years, slowly, I began to experience a bit of tingling and some minor numbness.
At that point I saw a neurologist who conducted an EMG/NCS and concluded I have SFSN/Idiopathic.
She indicated there is no treatment and to return in about a year.
COVID arrived and it was about 2 years until I sought a second opinion.
Neurologist number 2 conducted the EMG/NCS again and indicated I actually have CIDP. She ordered a slew of blood tests. No specific cause was discovered so I am under treatment for an autoimmune issue (Ivig infusions).
To date I do not experience true pain.
My symptoms are predominantly numbness in the balls of my feet and "stocking syndrome" that is slowly working it's way up my legs and us now approaching my knees.
My toes still feel very cold and I am experiencing minor discomfort that borders upon pain in my large toes.
I am currently undergoing my fifth (of six) round of Ivig.
Based upon my sensations my doctor believes Ivig, likely, is not working.
When I complete all six she will repeat the EMG/NCS and compare it to the one she did prior to Ivig.
I consider myself extremely fortunate not to experience the pain, to date, that so many relate.
Assuming Ivig is deemed to be of no benefit, my doctor has no further treatment options.
(I have neurologist number three lined up already; one who treats and is involved in research as well).
Neurologist #2 and I have discussed pain management for the future, as needed.
When we discuss pain management, we speak in terms of "when the time comes"; never "if the time comes".

I find it interesting to read of others who are experiencing "numbness only/no pain" neuropathy.

Jump to this post

I too have numbness in both feet and fingertips no pain

REPLY
@davehayward1

My symptoms started about 5 years ago with cold feet. Over the course of about 2 years, slowly, I began to experience a bit of tingling and some minor numbness.
At that point I saw a neurologist who conducted an EMG/NCS and concluded I have SFSN/Idiopathic.
She indicated there is no treatment and to return in about a year.
COVID arrived and it was about 2 years until I sought a second opinion.
Neurologist number 2 conducted the EMG/NCS again and indicated I actually have CIDP. She ordered a slew of blood tests. No specific cause was discovered so I am under treatment for an autoimmune issue (Ivig infusions).
To date I do not experience true pain.
My symptoms are predominantly numbness in the balls of my feet and "stocking syndrome" that is slowly working it's way up my legs and us now approaching my knees.
My toes still feel very cold and I am experiencing minor discomfort that borders upon pain in my large toes.
I am currently undergoing my fifth (of six) round of Ivig.
Based upon my sensations my doctor believes Ivig, likely, is not working.
When I complete all six she will repeat the EMG/NCS and compare it to the one she did prior to Ivig.
I consider myself extremely fortunate not to experience the pain, to date, that so many relate.
Assuming Ivig is deemed to be of no benefit, my doctor has no further treatment options.
(I have neurologist number three lined up already; one who treats and is involved in research as well).
Neurologist #2 and I have discussed pain management for the future, as needed.
When we discuss pain management, we speak in terms of "when the time comes"; never "if the time comes".

I find it interesting to read of others who are experiencing "numbness only/no pain" neuropathy.

Jump to this post

I also have numb feeling and no pain.

REPLY

I am 83 and have neuropathyin my feet and legs.I am having trouble with balance ,and feet are feel cold when they are warm to the touch? I asked my doctor about light theropy ,Tens theripy and non prescription pills.He said that they would probably not help my Problem.Has anyone used these products for Neuropathy?I purchased a $40.00 pair of special stratch socks from my Chiropractor that helped with my Balance.

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