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.

@njed

ernie21 -- I had questioned my primary doc about 7 years ago about Losartan because of possible ties to PN. I've been on this drug for high blood pressure since 2010. I was told that it is unlikely to cause PN yet, when you search it on line, there seems to be some evidence. I doubt there is any test that can be performed to prove a person developed PN due to Losartan.

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I developed PN from taking simvastain 20 mg over a period of 17 plus years. It started in the bottom of my feet and then over time the entire foot and six inches from the ankle. It is now in the finger tips.

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@njed

kim2 - Weird symptoms, same here. Started bottom of toes, tingle/numbness and got worse over years. From that to such numbness that I have bi-lateral drop foot and poor balance. Numbness and drop foot I can deal with, it's the balance that really annoys me. Neuro doc wants me to try physical therapy with specific exercises towards improved balance. I started a month ago, two days a week, a struggle but I am trying. So far, not a lot of improvement but things take time.

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Reply to
@njed
I used to play tennis, but stopped almost three years ago. That is about the time COVID meant restrictions and I was diagnosed with multiple myeloma. My balance has not been good since, but I continue to take walks and more recently I started taking Tai Chi Chih classes. I can already see that the latter is a big help. I would definitely recommend any Tai Chi classes for balance.

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@steveny9

I developed PN from taking simvastain 20 mg over a period of 17 plus years. It started in the bottom of my feet and then over time the entire foot and six inches from the ankle. It is now in the finger tips.

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ernie21 - Same progression, feet up to upper shins and now fingertips both hands. Opening things becoming an issue and picking up small things, pills, etc. Of course, the big question is how far will this progress. I think mine is holding where it is now for quite a while. My neuro doc says that can happen. Hope she is right.

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@steveny9

I developed PN from taking simvastain 20 mg over a period of 17 plus years. It started in the bottom of my feet and then over time the entire foot and six inches from the ankle. It is now in the finger tips.

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Steve, what made you think it was the simvastain that caused the neuropathy?
I have been taking 10 mg of Atorvatstatin (which I think must be like simvasstain, only a lesser dose) which I think is a generic name for "Lipitor" for about 4 years. My doctor told me it would probably make my ankles swell. Which it does. But I put my feet up for a few hours and that goes away, however, in addition to numbness in my feet at night, I have pain across the top front of both feet at the ankle level. This continues during the day. I use a topical gel on them (diclofenac sodium 1%) which helps and take Advil. I also get regular treatments at my hospital pain clinic for spinal stenosis (L4, L5 and sacroliliac).

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@steveny9

I developed PN from taking simvastain 20 mg over a period of 17 plus years. It started in the bottom of my feet and then over time the entire foot and six inches from the ankle. It is now in the finger tips.

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My doctor thought there might be a relationship between my current statin so we researched and found one with no influence. So now I take low dose Crestor which works for my cholesterol doesn't seem to increase my PN.

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@26sabrina

My doctor thought there might be a relationship between my current statin so we researched and found one with no influence. So now I take low dose Crestor which works for my cholesterol doesn't seem to increase my PN.

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I researched it too and found that Rosuvastatin was the least likely stain to influence PN. Since I developed PN from other statins I have been hesitant. However, I switched to 10 mg of Rosuvastatin for 40 days daily (down from 20 mg of Simvastin). Then I changed to every other day on Day 41 because I read that Rosuvastatin has a extended time of 14-17 hours. But I added Niacin everyday. I went in for a LDL test after my 50% reduction in Rosuvastatin and my LDL was 73. When I was on a daily Rosuvastatin it was 72. I am going to try 5 mg every other day with niacin day. Will let you know in a month how it went.

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@mahinsdale

Steve, what made you think it was the simvastain that caused the neuropathy?
I have been taking 10 mg of Atorvatstatin (which I think must be like simvasstain, only a lesser dose) which I think is a generic name for "Lipitor" for about 4 years. My doctor told me it would probably make my ankles swell. Which it does. But I put my feet up for a few hours and that goes away, however, in addition to numbness in my feet at night, I have pain across the top front of both feet at the ankle level. This continues during the day. I use a topical gel on them (diclofenac sodium 1%) which helps and take Advil. I also get regular treatments at my hospital pain clinic for spinal stenosis (L4, L5 and sacroliliac).

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Hi,
Because I switched to Simvastin 9 years ago and the progression started then but it did not occur to me it was from statins.

I also read that Simvastin was the least of all the statins to be effective and can cause PN. Well, I am an example of that.

I also went to see a neurologist and looked at him point blank in the eye and he said I was correct but it is not really discussed.

Since then I have switched to Rosuvastatin. It has a prolong time of 14-17 hours so I take 10 mg every other day. I just had a LDL test yesterday and it was down from 153 to 73.

I also am taking niacin. It reduces LDL and does not cause PN.

I recently have been thinking that high LDL is not the as much as the issue but Inflammation of the arteries. I am doing more homework on how inflammation occurs in the arteries and the damage it may cause. I beginning to believe that inflammation can lead to strokes and heart attacks.

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Hi folks......I went to Mayo in MN and after 5 days of every test under the sun, my dx from Mayo and confirmed a few years later at Johns Hopkins is damage to the axons. Official title was idiopathic sensory motor PM. How can a change in a statin medication repair/fix nerve damage already taken place? Anyone with same dx experience improvement with statin change? And, if so, what med helped. Best to all. Ed

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@steveny9

I researched it too and found that Rosuvastatin was the least likely stain to influence PN. Since I developed PN from other statins I have been hesitant. However, I switched to 10 mg of Rosuvastatin for 40 days daily (down from 20 mg of Simvastin). Then I changed to every other day on Day 41 because I read that Rosuvastatin has a extended time of 14-17 hours. But I added Niacin everyday. I went in for a LDL test after my 50% reduction in Rosuvastatin and my LDL was 73. When I was on a daily Rosuvastatin it was 72. I am going to try 5 mg every other day with niacin day. Will let you know in a month how it went.

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You may have found the right thing for you. I'd like to know. I'll keep hoping.

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@steveny9

Hi,
Because I switched to Simvastin 9 years ago and the progression started then but it did not occur to me it was from statins.

I also read that Simvastin was the least of all the statins to be effective and can cause PN. Well, I am an example of that.

I also went to see a neurologist and looked at him point blank in the eye and he said I was correct but it is not really discussed.

Since then I have switched to Rosuvastatin. It has a prolong time of 14-17 hours so I take 10 mg every other day. I just had a LDL test yesterday and it was down from 153 to 73.

I also am taking niacin. It reduces LDL and does not cause PN.

I recently have been thinking that high LDL is not the as much as the issue but Inflammation of the arteries. I am doing more homework on how inflammation occurs in the arteries and the damage it may cause. I beginning to believe that inflammation can lead to strokes and heart attacks.

Jump to this post

Niacin is necessary, but taking too much for too long via niacin supplements and the niacin added to cholesterol and blood pressure supplements can cause itching, a sign of liver damage in this case. I learned this from experience, fortunately in time to reverse the situation. So please do your research to learn how much niacin is appropriate and safe for you. As old Ben said, "An ounce of prevention is worth a pound of cure."

You might already be aware of all this. But if it helps anyone, it's worth posting.

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