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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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I have chemotherapy induced peripheral neuropathy as well. My last chemo was October 2023 and the neuropathy didn’t start until after my last chemo. I have numbness only, no pain. I am on Cymbalta and it is helping significantly reduce the numbness. It has interfered modestly with my sleep, but I gladly accept that for less numbness and improved balance and fine motor skills. I am on 30 mg once in the morning. My oncologist recommends 60mg but due to the sleep interference, I am staying at the 30mg dose. Good luck to you!!
I do not know where the following fits, but it might help someone I hope. I have been dealing with PN for almost ten years. My pain comes and goes on the back of my thighs but the numbness, cold, tingle and burning sensation is the worst issue to deal with. I have found that rubbing my feet before going to bed with a cream that I found that contains hemp and other natural ingredients provide great relief at night. That combined with an Ibuprofen tablet of 600mg lets me sleep much better. It reduces those symptoms quite a bit. The cream is called Mrs. Hemp, at the 10000 mg level (also made) at higher concentrations, and has no Arnica, as in my case that is and ingredient I cannot tolerate. Hope that will help some of my fellow sufferers.
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2 ReactionsThanks to all the participants in this discussion. I also have PN and have symptoms principally in my toes and forward soles. Those symptoms include numbness, tingling, and pain. My only remedy has been the Eucerin Cream that I use at night before retiring. However, I believe that it is the rubbing motion on the toes that provides stimulation to the blood flow in the lower foot as well as toes that generates some relief. Strangely enough, I find that laying in bed overnight causes the sensation to return to my feet and once my feet are in shoes the next morning , I am ready to go! I am very, very interested in Mrs. Hemp discussed by the earlier presenter. Best of luck to all.
How long have u been taking the protocol and are u satisfied
I am a new user have had pn for 3 years and right now very hard towalk
Same as me. Bringing this to show my doctor. Thanks!
Hello @jewels3, Welcome to Connect. I thought I would attach the updated list of the protocol supplements along with the links to the research so that you can print it out and share it with your doctor.
If you are comfortable sharing, do you mind sharing a little more about your diagnosis and any treatments you've tried?
Why the Protocol (Why-the-Protocol.pdf)
Hi!
Printed. Will review.
Lots to share!
How best to do so?
Have multiple health issues.
The one affecting me the most is this.
Weak arms legs lifetime.
Son 24 like me when younger.
Repetitive actions equal so many injuries.
3 sons. Delivered no pain until break of bag or 8cm!
Tingling feet.
Now tingling hands.
Feet overheat.
Cold to the touch.
Use Marks Work Warehouse driwear socks. Thinner than regular socks. Provided warmth needed.
Ulnar nerve injury Jan 2023.
Like I mean cement golfer's elbow. Very painful. Multiple chiro physio massage osteopath.
Progression am stiff everywhere. No pain. No flexibility. 9k spent so far. Loosened some but cannot keep spending.
Have high arch/very high arch feet. New orthotics by Foot Levellers. Digital. My feet a mess. Affects walking standing. New orthotics better than made by plaster.
Walking and standing matters where I stand and how long. Best for me low level ice hockey/shinny, ringette, beginner ski hills, ride my bike, rollerblade. As those do not hurt me.
Massage noticed ankle swollen? Also scoliosis low back and uneven shoulder.
Very very stiff.
Have pagets disease. Taken aclasta injection March 2023.
Have newly diagnosed diabetes and high cholesterol. Note am 130lbs 5'4 so not overweight.
Am a supertaster. Double taste buds. Too sweet. Too sour. Too spicy. Have come a very long way with eating more variety of foods.
Newly diagnosed diabetes and high cholesterol.
Also osteoporosis and osteopenia.
Also mild degenerative disc disease.
Biggest issue**** is stiffness and lack of flexibility. Help me here! As current massage and osteopath once a week
Think solved feet issues re orthotics. Walk a little each day as I adjust. Take a few weeks I think. Thanks to walmart providing senior drivable carts!
Yes still standing. Hoping to get to seniors yoga and fitness.
Back to walking daily is my next goal. 7000 steps a day is my max no injury.
What I walk on matters
Best to least
Pool
Treadmill or bike
School track
Uneven grass not for me
Trails
Sand not for me
Asphalt so so
Sidewalk the worst!
Ps am adhd so I ramble. So this is best I can do
Am on disability. Moved cheaper community.
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3 ReactionsHello, I am a 73-year-old male and only recently came across this website. I thank God I have finally found some others who are experiencing the same symptoms I am experiencing. Hopefully, I will learn from this connection and maybe be able to offer help to others from the things that I have learned. Clearly, we are a minority in that we in this group experiencing Neuropathy numbness with no pain.
I was diagnosed about two years ago with Neuropathy, but was never told specifically what type of neuropathy I had other than it was peripheral neuropathy. Follow up visits to my neurologist yielded no solutions or protocol to improve my condition. In fact, I felt that given my age, and that they said there was no cure for peripheral neuropathy, and the fact that I am on Medicare they took little interest in helping me. Maybe I miss read, but that was the feeling I had. So, I took it upon myself to research my condition, and see if there was any relief for my neuropathy with no pain.
Here is my history: at age 62 I was diagnosed with hemi facial spasms. The intensity of the spasms progressed after the diagnosis, to the point, where I could no longer function tedious technical work for a large pharmaceutical company. I then opted for the only solution given for my condition,which was to have brain surgery to relieve pressure on the seventh cranial nerve, causing the uncontrollable movement of my left eye lid, left cheek and lower neck. The condition had progressed to the point where I could hardly keep my left eye open. Unfortunately, complications arose during surgery and the blood flow to my eighth cranial nerve was severed, and I lost hearing and vestibular function on my left ear. Permanent and irreversible. Next, I had bilateral knee replacement. Results of a heavy activity in sports and hard work. Later, I had two back surgeries. Spinal stenosis and sciatica. Each about two years apart. There have been other surgeries, but I only mentioned these as I feel these are the only ones that may have some relevance to my Neuropathy.
I have already learned much from this site in the reading of the comments left by others experiencing my same type of neuropathy with out pain. I have not read all the comments dating back to 2020 nor the replies given to each of the comments. I thought best, I should get my story out and then go back and finish reading all the comments. I am brand new to this type of connection, speaking with others with my same conditions. I have always been a hands-on type guy and below are a couple things that seem to improve, not eliminate, my Neuropathy. I feel fortunate that my Neuropathy so far is limited to, my toes and up to my mid calf. I have tried electric shock pad, treatment, Neuropathy, socks, and only a few Neuropathy drugs, non-prescription. None of these have had any effect as far as I can tell. I say that, reluctantly, because there is no way we can know, how far our neuropathy would have progressed had we not taken these preventative actions. My actions have, obviously, not been a "controlled" experiment.
This is what I do routinely every day. After my shower at night, I use an eating fork and vigorously, scrape the bottom of my feet with the times on the tough skin and the back of the tines on the tender skin. I then take the fork handle, and move it up and down my calf, from the knee to the ankle. It can be a little painful, depending on the amount of pressure I exert on the fork. But I seem to have a high tolerance for pain. It seems an aggressive routine works best. I then massage my feet and calves for at least five minutes. Then I turn in for, a restful night of sleep. Upon rising in the morning, I performed that routine again. This time at the end of the "fork"routine, I take an analgesic ointment, and massage it into both feet, working my toes and bottoms of my feet vigorously. I continue applying the analgesic to my calves up to my knees massaging as I go. I put my socks on and get dressed. The analgesic provides a warmth that seems to penetrate to the nerves of the affected area and my feet can feel the warming effect provided by the chemicals in the analgesic. I then, go about my daily routine. During my routine, I make a conscious effort to walk concentrating on, pushing off with my toes with every step. Sometimes I catch myself walking and not concentrating on the "tow push off". But I think this is good exercise for toe strength, which is necessary for good balance
I have been on this routine for about three months, and without any doubt, I know this has improved my condition. It has now been seven hours since I applied the analgesic ointment and I can still feel the warmth of the ointment acting on my feet.I can now slightly feel the carpet under my feet when walking barefooted. A noticeable improvement.The analgesics I have experimented with have been Salonpas, Bengay, and most recently Vicks vapor rub. Although I'm not sure if it is considered an analgesic. But it seems to work best.
If you choose to follow this routine, give it at least 3 to 4 weeks before feeling an improvement, such was my case. And, I truly hope this has been helpful to someone who is looking for improvement. All comments are welcomed.
Thank you, dclark8.
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