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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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@campberj, I've tried a TENS unit - Zopec DT-1200 for about 6 weeks but it didn't help my numbness/neuropathy. I haven't heard of any successful stem cell treatment for neuropathy but there are a lot of places claiming that it works. Here are some discussions on both of the treatments.
- Has anyone had success using Tens on their feet?: https://connect.mayoclinic.org/discussion/has-anyone-had-success-using-tens-on-their-feet/
- Stem Cell Therapy for Neuropathy: https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/
- Stem cell treatment for peripheral neuropathy - any good?: https://connect.mayoclinic.org/discussion/stem-cell-treatment-for-peripheral-neuropathy-any-good/
- Mesynchymal Stem Cells to treat Neuropathy: https://connect.mayoclinic.org/discussion/mesynchymal-stem-cells-to-treat-neuropathy/
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Hi, first let me say that I am very sorry you have this awful, and progressive sounding illness.
Just curious, how did you come to know that neuropathy is what you have? I'm curious because you are a little unusual from most of the people with neuropathy that I have read about. Your symptoms of muscle cramping all over your body as you have described is one unusual (to me) thing. Another is the way it manifests periodically, being there for some period of weeks and then being gone for a period of time. Not saying it IS unique, just saying it's unique from my own limited exposure to symptoms I have heard people describe of their particular cases of PN. So were you clinically diagnosed as having neuropathy? Could it possibly be something else?
Just wondering about this. Thanks much, Hank
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3 ReactionsI agree with John on almost everything. But I walk barefoot most of the time in my house. I like the feedback that my feet and toes get as I walk around on the carpet bare floor. When outside or at the gym, I wear soft soled shoes with a wide toebox so my feet and toes have a chance to move instead of clumping around in some of those heavy duty sneakers. Best of luck to you!
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2 ReactionsI also go barefoot in my house because even a soft slipper causes pain that starts in the feet and spread up through legs and eventually I feel weak all over. I wonder if anyone has tried shoes that are advertised for neuropathy. I see them on the internet but am not sure about buying shoes without trying them on especially with how sensitive my feet are to any thing that remotely confines them. i do wear sneakers/walking shoes that I lace very loosely and only wear for short periods usually.
Hi Stef, I also am barefoot around the house, because it allows many of the muscles around the feet, ankles etc., to , more or less , to get our feet working again, but a warning.
If you have numbness in the actual soles of your feet, it can be very dangerous, as if we stood on glass, as example, the brain does not receive this information, and also the wound can become infection, and cause all sorts of medical problems. I have bought a pair of very lightweight shoes used by surfer for better grip in the water .Here in aussie they cost under $10. You can also use them in the pool, or in the shower.God never made feet to wear shoes,, or any type of insert. Best when out walking, if possible, skip the paved footpath, and pick rough unpaved areas or grass. Good luck Stef, and just go for it.
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1 ReactionThanks, Barry, for reminding me about some shoes in the back of my closet. I think they'r called KickFits. Available on amazon for $25 or so. They're water/yoga shoes that hug your feet at the same time as giving you a feel for what's going on UNDERfoot. Also, thanks for the reminder about where to walk -- rough terrain being better for stimulation and balance than smooth pavement (but be careful out there). Also, thanks for recommending Norman Doidge books. I bought the second one, "The Brains Way of Healing," and gave it to a friend with Parkinson's. I notice he also has given at least one TED talk. Gonna watch that today.
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1 ReactionAny suggestions regarding exercises to help with the consequences of neuropathy? Specifically weakness in the lower legs with difficulty with balance and walking.
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1 ReactionHello @fal, Welcome to Connect. If you go directly to the first post in this discussion, I shared a video on some exercises and also a link to exercise information on the Foundation for Peripheral Neuropathy that hopefully will answer your question. Here's a link to my post earlier in the discussion - https://connect.mayoclinic.org/discussion/neuropathy-exercise/?pg=1#comment-345443
Are you able to share a little more about your neuropathy diagnosis and any treatments you use or have tried?
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2 ReactionsI have been diagnosed with motor and sensory demyelinated peripheral neuropathy. Brain tumor, vascular conditions, toxic poisoning, and spinal degenerative conditions have all been ruled out as causative factors factors. Like most everyone else here, I have no pain associated with my condition. Although all four of my extremities have been identified with the condition, my fingers and arms, to me at least, are not an issue. I have pronounced weakness from my mid-shins down, however, and very weak in my ankles. Oddly, my right side is noticeably weaker than my left.
None of the specialists I have seen have prescribed any specific treatment, other than just suggest that I consider being fitted for leg braces. I am resisting this and will do so as long as possible. I am still mobile but limited in how far I can walk at any given time. I did purchase the booklet on better balance suggested by another poster here earlier, and some of the exercises recommended make sense and appear to be helpful. I exercise pretty much everyday on a stepper, rowing machine, and/or stationary bicycle. I have just recently started to seriously make an effort to start a walking engine again to try to build up strength and stamina again...we’ll see how that works out. I am rather reluctant to use free weights and/or elastic bands: when I do use them, things seem to be fine while using them but the following day my legs seem weaker and my mobility impaired. I am growing more convinced that strengthening my core muscle group is of more benefit than trying to strengthen weakened leg and ankle muscles. I look forward to viewing the video you recommended.
It seems that my greatest decline has been over the past two years. Things seem to have stabilized somewhat over the past few months, but that may be wishful thinking on my part. Looking back, I can see a slow decline over the past ten years. At first I attributed my very mild weakness to advancing age (I am presently 71 years old and in reasonably good health.). Coincidentally (or maybe not), my weakness seems to have started when I was first prescribed statins to reduce cholesterol numbers...pretty common in this day and age. I am not looking for a bogeyman to place the blame on, but this has always made me wonder. Although everything I have read and been told implies that I am wrong on this, it is interesting to note that one of the side-effects of statin usage is muscle weakness, although of very low incidence. And some people are adamant that statins can indeed be a culprit.
Anyway, thank you for this forum and letting people sound off about their conditions. I have enjoyed reading about others’ experiences. It has given me plenty of food for thought. My only complaint is that postings have dropped off over the past several months. I hope to read more in the near future. Best of luck and health to all!
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3 ReactionsHi @fal nice to hear from you. I am glad you will continue with exercising which always seems to have its benefits specifically with circulation as with you. Circulation stimulates the growth of new nerve cells. It can slow down the progression of neuropathy. Time will go by regardless of what you do so you might as well do something positive for yourself. You never know where it may lead. I have neuropathy and muscle weakness as a result of my AVM four years ago. I have found strengthening my torso has stopped my falls. My reaction time with movements is much quicker allowing me to maintain my balance. I haven’t had a fall in over 3 years but if I do I am able to use my hands to cushion my fall and sustain less injuries. Besides improved circulation that is a good motivator to keep exercising for me. We don’t need more health issues to deal with, lol. My imbalance issues have limited my exercise routines. I do 10 minute sessions many times throughout the day. I use a mini stepper and mini cycle machine. I want to add a third inexpensive machine for extending my exercise routines. There are foldable treadmill machines($150) that do not use electricity and therefore can be placed anywhere in a room. They have the handles for balance. I thought to use the treadmill while watching TV. Is this low aerobic activity something you can do? Have you thought about this form of exercise? If you find your legs become weak after your exercise perhaps consider a less duration but do the exercise more often in the day. The weakness I experience is immediately following the exercise activity and very short lived. Wish you well. Toni
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