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Neuropathy: Numbness only, no pain
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
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@njed You wrote: "The million-dollar question. If my numbness is not worse, why the decline in balance." It's breathtaking how alike our PN experience is! And yet, as you say, there's such a vast variety of symptoms. Gather 100 PN sufferers in a room and ask what their symptoms are, are get 1,208 different answers. 🙂 Have a good day, ED. –Ray (@ray666)
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1 Reaction@njed I have been following this recent thread of discussion and meaning to chime in. I fall in the same category as the latest participants in this forum. Ten years into PN. Lots of effort (physical and supplemental) to keep it at bay. Now, just a bit of numbness and only occasional pain (usually weather related!) Still, balance continues to worsen. Not horribly, though, because I work at it with exercise classes, tai chi, and even a few sessions with a PT.
Recently, I decided to "discuss" the issue with Chat GPT (or Google Gemini, can't remember which.) I explained the situation and asked about proprioception, as that is the closest description to what I'm feeling: a lack of awareness of where, exactly, my feet and legs are. I've told people that I sometimes feel like a marionette. The legs are moving but not always exactly where I think they should be. Anyway, this is what AI said to me:
"You are spot-on: the core issue driving balance loss in peripheral neuropathy is impaired proprioception—your body’s internal sense of position and movement.
Even when pain or surface numbness subsides, damage to specific nerve fibers often persists or progresses, disrupting the real-time location tracking your brain needs to stay upright."
The AI program suggested a three fold treatment approach for improvement:
1. Targeted Ankle & Lower-Leg Strengthening: Strengthen the stabilizing muscles around the ankles and feet to provide mechanical support where nerve signals are weak.
2. Sensory Weight & Resistance Work: Exercising to mildly (then increasingly) compliant surfaces (like a balance pad then moving up to something like the SandDune gadget.)
And lastly, 3. Vestibular & Visual Retraining: Perform balance exercises while safely altering visual cues (e.g., standing near a wall or corner with eyes closed or tracking a moving target) to force the brain and inner ear to adapt.
That last one caught my attention as I have tried doing some movements with my eyes closed or while looking in different directions. But, I didn't really think about what it was doing and how important it is.
This is a form of Neuroplasticity! Creating neural pathways. Train your brain to work in a different way since the original path of signals is damaged. Vision is a huge component of balance and likely the only reason we are still able to continue balancing despite our damaged nerves. If we take away the normal vision assistance, we can train our brains to adapt and find our balance through different avenues. Sort of!
Anyway, I'm going to keep up my normal level of exercising (not extreme, for sure) and increase my use of vision adaptations.
Trying to marching in place with eyes closed and getting better and better at staying in one place. Standing on one foot or just using the kickstand position (balance on one leg with the other knee bent and foot barely touching the ground, like a kickstand) while looking in different directions or moving your arms in a variety of ways. I'm sure there are others, but you get the idea!
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4 Reactions@njed I have noticed my balance becoming worse. It is not too bad yet but I do notice the imbalance.
@mamamarch Thanks for jumping in and sure appreciate your comments. I did attend PT for balance exercises and some items I used at PT I went and purchased and have them at home. I am now having problems with a balance board, but I use a thick balance pad, and I also have a huge balance ball to sit on. I also do balance exercises with my hands over the kitchen counter. Standing on one foot for 6 seconds is becoming difficult but I work on it. We're not going to turn this around, but my goal is to slow down progression. The big question is can we slow it down? How do we judge that? Mayo told me what I have can't be reversed. So, I guess we go for the next best possibility.
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1 Reaction@dk1 My balance seems to be worse later in the day, like early evening especially if I had an active day. Hard to figure out.
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1 Reaction@njed "The big question is can we slow it down? How do we judge that?" I tried "judging" the progress once! I designated a space in my home (long hall) and timed how quickly I could get from one end to the other three times. I figured between the slight jog and the turning process, I'd lightly covered most of what I needed to know. I wrote those results down and thought I would try again in a given period of time, say 3-4 months, maybe more.
Sounded like a good idea, but I never followed up. That was a couple of years ago. I wonder if I could even find that information I recorded. If I do, I'll try it again and let you know!
@njed
I have had PN for 7 years, which they now think is related to spinal compression after several EMGs. I’m not convinced my PN is very symmetrical but worse in left leg as it’s now presenting as a weak calf. The progression is uneven, I can have a scary week where I think I’ll be in a wheelchair in a year, and the the symptoms lessen, or my feet gets used to the new damage and my balance improves, but yet I’m still able to walk steadily. I’m in a scary phase right now, but the prolonged humidity always makes it worse and I hope to back to a new baseline as Fall approaches.
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1 Reaction@njed Hi! I haven’t noticed anything different later in the day but I have noticed an imbalance during the day.
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