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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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@athenalee, I regret it took so long for you to receive the proper diagnosis. While it is good news indeed that you eventually received the liver transplant, a delay in ordering tests/scans or mis-diagnosing a condition can create serious complications later on for the patient.
My 1st cardiologist of several years brushed off my numb/cold feet as some form of arthritis. A new cardio referred me to a neurologist and along with the quick p.n. diagnosis and due to his diabetes testing, I was diagnosed with pre-diabetes. My pcp had not mentioned that my A1c had been reaching consistently higher numbers over three years and I hadn't yet started researching how to interpret lab scores.
Last week, I saw a new nephrologist and learned more in that one visit with him than with several unhelpful visits with the previous doc.
I couldn't agree with you more that despite any reluctance some of us face in making a change in docs, it is well worth the risk and can make a great difference in treating our chronic health issues.
Thanks to you and others who make this such a worthwhile forum for learning and sharing!
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2 ReactionsThank you for adding another possibility to check out, @avmcbellar. Toni and John, @johnbishop, like @helennicola, I am also seriously considering downsizing with a move closer to my children so have started rethinking whether or not to add more equipment to the house.
Now that more vaccines are becoming available (thank goodness!) and I've gotten both Moderna vaccs (Yippee!), I'll still be taking all the extra covid precautions but am hopeful that I may also be able to return to my exercise group in the not-to-distant future. I've printed out both your links and put them in my "exercise folder" for reference.
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2 Reactions@fiesty76 you’re welcome. Hopefully soon all will be well enough to continue with normal routines. I would hold off too since your living location may change. Best wishes and stay healthy. Toni
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1 ReactionHello to all who are participating in this particular subgroup. I believe this is where I will plant myself for awhile. I can also scan through other discussions as needed, but you are going to be my neuropathy buddies!
I am new to the Mayo Clinic Connect forums and slowly figuring out the best way to navigate, save, and search for posts that interest me. And thank goodness for @johnbishop who always has a link to things as they are discussed. I can't imagine the organization on his computer!
I have a question (well, several) that maybe someone has heard answered or knows more than I do. Why numbness and no pain???
Is it possible to know from the nerve conduction tests if you are at the beginning of the nerve damage issue or approaching the end stage. My neurologist stated that my condition would not progress and I'm not sure I believe that, though it would be nice! If I do feel pain one day does that mean my condition is worsening or could it mean It's actually improving? Is it possible to present with numbness and never feel pain? Is it possible to present with numbness and not develop neuromotor issues.
Does any of this have something to do with whether the affected nerves are demyelinated vs damage to the axons? And does that also relate to sensory vs neuromotor issues? Any thoughts or experiences with these concepts?
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2 Reactions@mamamarch - Welcome to the 20% club as my Mayo neurologist described it to me when I was diagnosed with idiopathic small fiber PN. You probably are not old enough to remember the old television show The 64 Thousand Dollar Question 🙂 but I think that's what you are asking. It's a great question but I've never seen a clear, easy to understand answer describing why some neuropathy patients have chronic debilitating pain while others like myself only have numbness and maybe a little tingling once in awhile. I can tell you I jumped a little during my first nerve conduction test but it really didn't hurt. My own non medical opinion is that it does have something to do with damage to the myelin sheaths that protect the nerve fibers. When the myelin sheath is damaged the nerves can misfire and signal the brain that it's not happy. I'm just glad my not happy is numbness and not pain. Lately my feet and legs have been feeling a little more on the normal side which I'm hoping is due to the supplements I take. I still have to wear compression socks for my lymphedema which I hate and that is a constant squeeze on the legs.
Here's a little information on the topic but it really doesn't explain it to me in words I can understand. Hopefully some other scholarly members may be able to provide a better explanation for your question.
Structural and functional differences between neuropathy with and without pain?:
-- https://www.sciencedirect.com/science/article/abs/pii/S0014488611002160
Myelin Sheath - an overview
-- https://www.sciencedirect.com/topics/medicine-and-dentistry/myelin-sheath
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2 ReactionsHi MamaMarch, I have completed years of intense research on Peripheral-neuropathy . I am now aged 90 , an on nil medication of any description. I have opted for the practise of Neuroplasticity, and am achieving good results. Please read my previous posts, to fully understand . Good luck and go for. I want a cure not just releif.
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1 ReactionHow do I retrieve your previous posts?
@drolker, To view a members previous posts click on their @ membername to view their profile and you will see their previous posts and can scroll through to read them. Here is the discussion started by @user_che214927 onk Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
my particular experience with peripheral neuropathy began about 5 years ago, but upon reflection, with my wife, I believe its etiology was much longer. Perhaps decades. A heaviness in my left leg stopped me from running decades ago, the dragging of my left foot, poor Babinski reflex, foot drop symptoms were all part of a growing list of subliminals that I adapted to and categorized as the aging process. Then one day I called my pain doctor about a change in symptoms that I no longer remember. His nurse called me back and said get to a neurologic clinic ASAP. Whenever I asked for elaboration the nurse repeated the phrased "Get to a neurologic clinic ASAP." IE NOW 3 days later I arrived for my appointment.. Not very ASAP but the earliest one available. The long and short of it after the usual bank of blood work, electrical tests, scans I was diagnosed with nondiabetic "Severe Axonal Peripheral Neuropathy." . I also suffer from foot drop, a condition the doctor falsely thought I would spontaneously recover from. I am lucky because I have no pain and take no drugs. I try to walk at least !.5 miles a day with 2 canes and do 3 to 5 miles on a stationary bike at 1 mile per 5 minutes. I now work at it every other day. My personal observation is that my condition fluctuates with sleep and food. The best effect from food comes within an hour after eating. I also noticed that I can walk off initial fatigue about halfway into my walk. I will be 80 in a few months. Assuming I constellate somewhere within the spectrum of peripheral neuropathy, I hope there is value in my contribution. I am lucky indeed; no pain.
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1 ReactionHello @daviddemello, Welcome to Connect. Thank you for sharing your experience and journey with Axonal Peripheral Neuropathy. It sounds a lot like my own experience except I don't have foot drop and my diagnosis was after 20+ years of living with the worsening symptoms of numbness and no real pain before getting diagnosed with idiopathic small fiber peripheral neuropathy. I recently turned 78 and also think that exercise and healthy eating is a must along with a good nights sleep. There is much value in sharing as the more we learn about our condition the better we get at asking the right questions and finding treatments that offer some relief.
You may be interested in a few other discussions:
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Does anyone find that a type of shoe helps your foot neuropathy?: https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/
-- Young adult with idiopathic sensory axonal neuropathy: https://connect.mayoclinic.org/discussion/young-adult-with-idiopathic-sensory-axonal-neuropathy/
Have you done any research into your diagnosis of Axonal Peripheral Neuropathy?
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