Connect
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/
———————
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.
———————
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.
———————-
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/
———————–
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/
————————
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
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Thanks @afirefly, I think this is the book you are referring to and it looks like it has some really useful information. I bookmarked the link and may buy and download it to my iPad.
Better Balance: Simple exercises to improve stability and prevent falls (Book, PDF or ePub available):
-- https://www.health.harvard.edu/exercise-and-fitness/better-balance-simple-exercises-to-improve-stability-and-prevent-falls
-
Like -
Helpful -
Hug
3 Reactions@jesfactsmon, Thank you so much for your very kind response, Hank. Your posts have so often been just what I needed to hear/read at the time and I'm pretty sure that you along with a few other "Champion Supporter/Encourager/Informers" became a favorite of many of us in the various Connect Support groups early in our membership. So your reply means more than you might imagine!
Got to John's new sub-group and now your latest response to me by clicking on Daily Digest from Sept. 10th in my "sub-group filtered site". Have been attempting other ways, once in, to get reactivated to Connect forums. Not yet successful but will keep trying. A few months ago, when something similar happened, @johnbishop sent me a link and I've tried it again and a few others unsuccessfully. Hoping that as long as I can access from that earlier daily digest, I can access something "active" to read and respond to.
I'd received a ton of neuropathy posts just before I stopped receiving access. A bit overwhelmed by the sheer volume, remember just kept hitting the delete button and now wondering if that action by me might have resulted in the loss of access.
Thanks to all who share their journeys and those of their loved ones here. Mayo Connect has been a remarkable "life booster" for me.
-
Like -
Helpful -
Hug
3 Reactions@fiesty76, When you deleted the email did you unsubscribe from the discussion? That's how it could have happened that you are no longer receiving notifications. The emails can get quite overwhelming when there is a lot of non related chatty posts in a discussion. If you want to see if you are subscribed to this discussion, just scroll to the top of the discussion after you click the VIEW & REPLY button and look to see if it says +Following or +Follow. If it says +Follow you are not subscribed to the discussion and won't receive new posts.
-
Like -
Helpful -
Hug
2 Reactions@johnnbishop, @firefly, John shared that he prefers leather sided slip on Sketchers for neuropathy. A long recovery 15 yrs ago from plantar fasciitis taught me the importance of investing in really supportive shoes. With naturally high arches, I did try several different inserts but mine weren't too successful. What works best for me are well fitted lace up leather and tennis shoes. I haven't worn Sketchers but do have a couple of well fitted leather slip ons for quick trips to the mailbox or dumpster.
Also, because my feet and hands have always been unnaturally cold but not painful, for many years, I've worn socks most of the time, now, not only for the warmth but also to protect my numb feet if not wearing shoes. I wear loose fitting cotton socks to bed in case I need a bathroom trip.
This past winter, for the first time, I began wearing what sounds similar to what John found...fabric, soft felt like, gloves with a roll back top for when reading or watching tv. I would dearly love to find more of these to order because they bring real comfort while allowing my fingertips the usual mobility. This may be a good day to do a google search for something similar. My pair are washable but having an extra pair for the car would be nice. If found, I'll post the link.
-
Like -
Helpful -
Hug
2 ReactionsThanks, stefspad, for this suggestion: "Best advice from my PT: whenever you think of it — whether standing, sitting or lying down — clench your buttocks for five seconds. You can't just think about your feet and hands, you have to consider the source: legs, arms, shoulders, buttocks and spine." This makes so much sense to me. Appreciate it too because with hypotension, I learned that if my b.p. suddenly dropped low enough to make me dizzy, clenching my fists tightly until I could sit down helped the blood circulation.
-
Like -
Helpful -
Hug
3 Reactions@cnn, Congratulations to being among our 9 decades lived "warriors"! Had to chuckle at what you wrote because in my 7th decade, I now blame most everything that goes awry on my advancing seniority. smiles. Yes, day to day relief is a great goal for us all!
-
Like -
Helpful -
Hug
2 Reactions@johnbishop and others, I'm laughing at your comment about being "a work in progress"...aren't we all???? vbg
I'm going back this morning to read all posts and copy links from this new sub-group because of my shaky access to the group at large.
Athletic most of my life, it became disturbing when I began noticing more trouble with balance a few years ago and long before the neuropathy diagnosis. Thx for the balance link! Balance in all areas of life is goal worthy at any time (and harder for some of us than others, speaking from personal experience..lol) but when we depend on our legs & feet to get us from point A to B, it becomes critically important. Want to read through other posts and then read the great links being posted here. I started a word doc. some time ago for Mayo Connect posts and links for later reference and these will be read with great interest.
-
Like -
Helpful -
Hug
3 Reactions@user_che214927 Hi I'm Linda /Lioness I've been following this conversation and have neuropathy what is this neuroplasticity? Is there any information on it I'd like to try it my arms ,hands and thighs are a involved I have cold feet all the time is this caused by neuropathy?
-
Like -
Helpful -
Hug
2 Reactions@user_che214927 @johnbishop and others, Barry, I'm laughing because I shied away from telling my age to others most of my life. Now, from one 77yr younger to another, John, I can laugh and repeat what another fabulous contributor to the kidney Connect forum has written: "Today is a great day to be alive". Soo true! Yes?
Question for John or another, What to ask neurologist about what specific type of pn I have? All I was told was pn??? I had both the blood/urine and electrode tests but are different ones needed to better define the type of pn?
John, have yet to try compression socks because I don't have the dreaded, painful lymphedema you have. My close friend did find help and relief from the compression adustable arm wraps prescribed for hers. Now wondering if the socks would help my pn too?
@lioness - Here's the discussion -- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
-
Like -
Helpful -
Hug
4 Reactions