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’d like to add to the Driving answer. I have PN with numbness/loss of sensation/ankle weakness of my right lower leg. At my brother’s urging, I finally admitted to myself that I needed more current safety features in a car than what my little 2009 compact had. I did my research and recently bought a 2020 model. It has been eye-opening- my favorite, wonderful feature for PN is the “auto-hold”, when stopped, but in Drive (like at a stoplight), the car is braked without you needing to put continual pressure on the brake pedal. With the old car, my leg would start to hyper-tingle, then hurt, then cramp. Now it’s a breeze! The safety bells and whistles (literally) make driving so much easier and safer with the loss of sensation in my right foot.

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@centre

I’d like to add to the Driving answer. I have PN with numbness/loss of sensation/ankle weakness of my right lower leg. At my brother’s urging, I finally admitted to myself that I needed more current safety features in a car than what my little 2009 compact had. I did my research and recently bought a 2020 model. It has been eye-opening- my favorite, wonderful feature for PN is the “auto-hold”, when stopped, but in Drive (like at a stoplight), the car is braked without you needing to put continual pressure on the brake pedal. With the old car, my leg would start to hyper-tingle, then hurt, then cramp. Now it’s a breeze! The safety bells and whistles (literally) make driving so much easier and safer with the loss of sensation in my right foot.

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Hah! You’re awesome! I thought that button was an emergency brake, so I’ve not used it. Thank you! I’ll certainly be using from now on.

I’m a big fan of the adaptive cruise control…so very helpful in giving my foot a break!

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@centre

I’d like to add to the Driving answer. I have PN with numbness/loss of sensation/ankle weakness of my right lower leg. At my brother’s urging, I finally admitted to myself that I needed more current safety features in a car than what my little 2009 compact had. I did my research and recently bought a 2020 model. It has been eye-opening- my favorite, wonderful feature for PN is the “auto-hold”, when stopped, but in Drive (like at a stoplight), the car is braked without you needing to put continual pressure on the brake pedal. With the old car, my leg would start to hyper-tingle, then hurt, then cramp. Now it’s a breeze! The safety bells and whistles (literally) make driving so much easier and safer with the loss of sensation in my right foot.

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I have neuropathy from Sjögren’s in my feet and it comes and goes. I have the same feature on my car and I use it all the time. It helped especially when I was having bunion pain in my right foot.

Now my foot is fine but it is still great not to have to put that pressure on the ball of my foot on the brake the whole time I’m stopped. Must remember it’s on and tap the brake as you press the button to release!

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I’ve had PN for 13years. It started with pain & some numbness now it’s all terrible numbness. I’ve been taking 200mg of Lyrica for a long time but it supposedly, does nothing for pain. My question is - has anyone titrated completely off Lyrica?
Thanks.

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@solobeee1

I’ve had PN for 13years. It started with pain & some numbness now it’s all terrible numbness. I’ve been taking 200mg of Lyrica for a long time but it supposedly, does nothing for pain. My question is - has anyone titrated completely off Lyrica?
Thanks.

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@solobeee1, Have you discussed tapering off of Lyrica with your doctor? You might want to read through the following discussion to learn what others have shared -- Tapering off Lyrica gave me panic, nausea, extreme anxiety: https://connect.mayoclinic.org/discussion/lyrica/.

Here's some more information you might find helpful.
-- Lyrica Withdrawal Symptoms, Timeline, & Treatment Options: https://www.recovery.org/lyrica/

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@evansjohn007

Here is the short story - I developed neuropathy in both by feet at the age of 41. I went to see neurologist in the UK (*8), Germany (*1), nobody could identify the cause or stop the pain.

I eventually went to USA for nerve decompression surgery, I paid ~40k for two operations - they didn't really work - at first I had some relief, then after a month or so I was back to normal in terms of the pain.

I came back to the UK, I then suffered with a significant amount of anxiety/depression - I found the physical side of the pain and the emotional distress too much to live with both the moment and I had a fear for my future, I really wanted to end my life, being the father of two amazing kids this is hard for me to admit, but if it wasn't for them then I wouldn't be here now.

I lived in the hope that I would find myself a way through this, the hope came in the form of the protocol 525, it has literally saved my life!

After 3 months of taking the protocol 525 the relief of pain was unbelievable - my recovery continues. I love everyday, I am naturally happy and I don't have pain in my feet stopping me from enjoying each day nor do I have anxiety of the future. I feel lucky to still be here, and forever grateful for Bob who created the protocol 525 - he is a special guy.

If anyone wants to speak to me about my journey then please reach out, just send me a message and ill share my mobile number and we can talk..

I find it sad/heart-breaking that fundamental backing/support from our medical community isn't behind the protocol 525 rather than their endeavour to just prescribe drug after drug.

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Has anyone had a problem with diarrhea after starting protocol 525. If so, how did you deal with it?

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@bwin11

Has anyone had a problem with diarrhea after starting protocol 525. If so, how did you deal with it?

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@bwin11 You might try searching the Facebook group to verify this but I seem to remember a few members of the group reporting diarrhea due to the R-ALA. I thnk it may have been due to the member not doing the ramp-up of R-ALA when starting to allow the body to adjust to the high amount of R-ALA. Here is a search link (only works if you are a member of the Facebook group) - https://www.facebook.com/groups/952340464830989/search/?q=diarrhea

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My feet are numb in toes and tops of feet, no pain. Have had now for about 7 years but worse now, taking chemo pills for Multiple Myeloma. Numbers good I feel good but feet drive me crazy. I also have had bck pain for many years.DX with MM 2 years ago. What is good for my feet? Would message be good? I really do not to add a pill for this. What would be something to try besides a pill? Thank You

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@ancopau1998

My feet are numb in toes and tops of feet, no pain. Have had now for about 7 years but worse now, taking chemo pills for Multiple Myeloma. Numbers good I feel good but feet drive me crazy. I also have had bck pain for many years.DX with MM 2 years ago. What is good for my feet? Would message be good? I really do not to add a pill for this. What would be something to try besides a pill? Thank You

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Hello @ancopau1998, Welcome to Connect. I can relate to your numbness as I also have numbness in my feet from small fiber peripheral neuropathy. Exercise and stretching can help. Here's an article that you may find helpful:

-- Stretching Exercises to Treat Numbness in the Feet: https://www.livestrong.com/article/415828-stretching-exercises-to-treat-numbness-in-the-feet/

You mentioned you have Multiple Myeloma. I think you might find the following discussion helpful where you can meet members with MM and learn what they have shared.
-- Multiple Myeloma: https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/

Has your doctor offered any suggestions like physical therapy to try and help with your feet?

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@ancopau1998

My feet are numb in toes and tops of feet, no pain. Have had now for about 7 years but worse now, taking chemo pills for Multiple Myeloma. Numbers good I feel good but feet drive me crazy. I also have had bck pain for many years.DX with MM 2 years ago. What is good for my feet? Would message be good? I really do not to add a pill for this. What would be something to try besides a pill? Thank You

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Deep tissue massage helps a bunch. Twice a day,

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