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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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@fiesty76 - Here are some discussions on statins and neuropathy. There are links within the discussion for reference to causes.
- Statins cause peripheral neuropathy?: https://connect.mayoclinic.org/discussion/statins-cause-peripheral-neuropathy/
- Statins and peripheral neuropathy: https://connect.mayoclinic.org/discussion/statins-and-peripheral-neuropathy/
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2 Reactions@johnbishop, Thank you so much for the statin links. My goodness, we are so fortunate to have your guidance and such willing support and help. After reading the information provided by the links, I'm wondering if adding a bit more of the Pritikin diet to what I already follow for diabetes and kidney, I might begin tapering off on the atvorastatin. Need to check my dosage and read more about this statin and make a call to doc to see if I might take it every other day until my next annual lab in Jan. Great information and thank you again for the earlier links for p.n. too...A wealth of reading here. Hugs.
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4 ReactionsHi! I had the “sock bunched under the toes “ feeling for years before finally being diagnosed with pn... no other health concerns. No meds other than large dose Of atorvostatin for about 20 years.
It is now in feet and lower legs.. numbness only.. and not complete numbness.. feeling of wearing long socks. Went off atorvostatin last year and am now taking smaller dose of simvastatin. Have been taking coq10 (had not done this before). No progression or regression noticed yet. Hang in there!
I do have cold feet and need to wear warm socks.
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1 Reaction@marymaurer, I took statins for over 15 plus years but no longer take them. I've always thought that may be why I have idiopathic small fiber PN. I'm just happy I only have the numbness and not the pain. Sadly I think the longer you have been taking statins, the less likely it is for regression to occur.
The implications of statin induced peripheral neuropathy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
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1 ReactionI am 73, 5 years ago I was diagnosed with peripheral neuropathy, which I am told is a mild case, idiopathic. It started in my left foot and progressively has now engulfed both feet and lower legs. I am happy to say that I have NO PAIN, just numbness and some tingling. My only relief is Gabapentin, low dose, which I may not even need (just for sleep). Now, I have always been concerned that my condition resulted from drug interactions, but I am only taking a couple of meds, and these have been ruled out. So I feel resigned to having PN. My questions deal with the future: how much will it progress into the upper legs? Will I come to a point where I am unable to be mobile? I have no issues with my hands/arms, although I do have more difficulty writing these days. Could my condition be something else, like MS, given no pain?
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1 ReactionFollowup: I have reviewed the substance on statin induced NP. I have taken statins over the years, and currently take pravastatin every other day. This might aggravate my mild condition?
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1 ReactionHello @jrayk, Welcome to Mayo Clinic Connect. There is plenty of evidence of statin induced neuropathy. I have no medical training or background but think that it could be causing or aggravating your symptoms of neuropathy. Here are some reference sources I've found.
The implications of statin induced peripheral neuropathy
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
— http://care.diabetesjournals.org/content/28/8/2082.1
Medication Induced Neuropathy
— https://link.springer.com/article/10.1007/s11910-003-0043-8
You may also be interested in another related discussion where you can meet other members discussing statins and neuropathy.
Statins and peripheral neuropathy - https://connect.mayoclinic.org/discussion/statins-and-peripheral-neuropathy/
Have you discussed your thoughts/concerns with your doctor?
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3 ReactionsOMG I'm tearing up reading your discussion with @afirefly. I thought I'm the only person dealing with this progressive nueropathy through Mayo. I can identify with most of your stated conditions, the fears of a loss of independence, what health complications are ahead of me and the lack of an effective therapy. My neuropathy is also idiopathic - no known cause. It's many years into the progression. It started about a decade ago with numb/tingly toes and then feet a few years later. Now, my toes curl under as I walk, tripping me up; so I have to wear good fitting shoes. One year ago, I underwent Lumbar Decompression Surgery, L3 to L5, both left and right, in an attempt to get back some nerve/muscle control of my left foot. Several months post surgery, I noticed both feet and legs were equally worse. It does appear that I healed and recovered remarkably well from the surgery. I don't notice any restoration in leg or feet feeling yet, but hopefully in the second year I may. I used various strategies to maintain my fiercely guarded independence, especially during Covid-19. Unfortunately, the progressive nature of neuropathy is making every aspect of life more challenging. Like you, I don't experience pain, except from the muscle cramps, which nothing seems to help. Thankfully, I go through weeks of relative less cramps to weeks of intense ones. I keep getting weaker and find it more difficult to exercise. Now that my neuropathic nerve/muscle degradation involves not just my feet, ankles and legs, but my abs, chest and arms; I'm experiencing heart and other, seemingly unassociated complications.
Question: Are there other conditions/diseases that can cause these kinds of symptoms and is there really any effective interventions or therapies?
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3 ReactionsHello @campberj, Welcome to Mayo Clinic Connect. I'm sorry to hear that you also have similar symptoms but I can relate to your feeling of finding out that you are not alone in the way you feel and your symptoms. You ask a very good question and one we have all searched looking for an answer in hopes that we can find that one fix that gives us back some of our previous abilities and life.
I know that daily exercise helps me mentally and physically by keeping the blood flowing. You mentioned curled toes. I also have "hammer toes" and my neurologist actually told me that's common with people who have peripheral neuropathy. I think if it's severe enough there is surgery that fixes the condition. I've just never felt mine is that bad. There are a couple of discussions you might find helpful.
- Hammer toes: https://connect.mayoclinic.org/discussion/hammer-toes/
- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
You also mentioned muscle cramps in your legs. Have you found anything that gives you relief when the cramps appear?
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2 ReactionsThanks John,
I don't have hammer toes, there's no pain; they just have a mind of there own, doing their own thing, not responding to motor neurons. I don't have issues with conditions benefiting with MFR, however as an elder, exercise and stretching help me a modest amount in normal common ways, as they do for all of us, with or without neuropathy. The muscle cramps can be intense and every major muscle group of my body can have them. Finger cramps are curious, probably look weird to others, but are not really very painful or of a long duration. When they happen, I use my other hand and press down the bad finger on a table top or my thigh until it relaxes. Wrist cramps are more difficult to deal with, but of only slight discomfort. Your leg cramp question is well directed Leg cramps are usually the worst. When cramps occur, if it's my leg or legs, I get on my feet and walk around. If it's my abs, I stretch my torso diagonally for relief. If it's an arm, I'll raise my arm, curling it across my body and they soon stop. Leg cramps occasionally will benefit by drinking water or milk or eating a banana as I walk it off. The calcium and potassium boost sometimes helps, just like when I was young. But now in later life, sometimes the painful intense gripping leg cramps can go on and on for over half an hour. That can really raise your blood pressure. Nothing can always give me relief and the cramps go in cycles for several weeks more intense, then less or none for several weeks. Knowing what to expect is helpful. I just keep calm and carry on. Progressive muscle atrophy, with it's resulting weakness is very discouraging. Three years ago I worked out at the local SnapFitness gym daily and developed a slight abs six-pack. That's a distant memory now. Muscle twitches (fasciculations) occur with regularity all over my body. Enough about me.
Has anyone tried TENS, Transcutaneous electrical stimulation or Stem Cell therapy?
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