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
How high is your A1c
When I received my MRI report (August 2019) I was shattered to read all the things that were wrong with my lumbar spine. Pessimistic, melancholy person that I am, given to catastrophic thinking, all I could think of was "life as you know it, is over." Then the doctor explained that "we don't treat the images, we treat the symptoms as the patient describes them." My symptoms (numbness, tingling, pins and needles, all in the right leg/foot) corresponded to what the MRI report was showing as compression of the sciatic nerve. So, since symptoms and image matched, my doctor ordered PT to treat this particular condition. The therapist then determined (not surprisingly) that my "core" muscles were weak. Treatment was focused on strengthening these muscles, to "stabilize" (as she said) the spine. With less loose movement, there would be a reduction of vertebral pressure on the nerve root where it exits the spinal column. About 2 months later I began to experience relief from the random nerve firings, but a slight foot numbness remained in the metatarsal area and in a narrow 6" band from the ankle up the outside of the right leg. Another month of PT brought no further progress and so I was discharged. I continued the exercises at home and enjoyed two years of stability in that the random nerve firings had ceased, and the slight numbness remained confined to those areas I just described.
None of the other horrors of my spine (herniated disks, other stenotic areas) seemed to be producing symptoms, so they were not specifically treated (although they likely benefitted overall from the targeted treatment), and I stopped worrying about them. So that's what PT did for my nerve damage. Until early this year.
It is not unreasonable to expect that arthritic deterioration of the spine (and other joints) will continue. After all, the conditions that initiated the deterioration (age; postural misalignment, specifically, in my case, lumbar scoliosis) are still in effect. My thinking is that continuing PT exercises at home help the body hold onto whatever benefits it derived from the initial treatment AND (hopefully) slow the rate of further deterioration. Was I correct? Would symptoms have returned sooner if I'd not conscientiously continued the PT at home? No point in reflecting further on that, it's all in the past.
Right now I have to face the reality that, starting in January, the symptoms in the right foot and leg have increased a bit, both in intensity and in location. AND that different symptoms have appeared in the left leg (numbness and slight tingling starting around the hip area, and moving down the outside of the leg). In late January, my doctor and I worked out the following treatment plan: (1) immediate PT to treat the left leg; (2) sign up for the 8-wk "Mindfulness-Based Stress Reduction" class that was starting at our university medical center at the end of February; and (3) schedule weekly acupuncture starting at the end of March. So that's where I am right now.
I hope this has helped you analyze your condition, as to whether you might benefit from PT for the finger numbness possibly produced by stenosis. (I am puzzled, though, as to why cervical stenosis would affect your feet.) It's also possible the finger numbness is caused by carpal tunnel syndrome.....has your doctor mentioned that?
It's reassuring to know that you're functioning well at the present time; I would urge you, though, to reflect a bit on the future (don't obsess, please! I know what THAT"s like.....which is why I'm taking this stress reduction class.....)
My best to you. Pat
-
Like -
Helpful -
Hug
1 ReactionThanks for the info I know my core muscles are weak.
Will start to work on that
Hope things continue to go well for you
I would love to hear how acupuncture goes. I have a consult next month for Integrative Therapy,, mostly for nutritional guidance, but includes acupuncture which I know zero about. But I look forward to trying anything that’s not a narcotic. I like your advice about the spine pictures, and making sure the symptoms are being treated vs the picture!
I with ya on the "anything that's not a narcotic"!!!!
I haven't found much research about the effect of acupuncture on neuropathy (from any cause). There are some tantalizing positive results; for example, that a few weeks of treatment enabled patients with lumber spinal stenosis to walk a bit farther without having to stop and rest. There were a couple other papers, too....but as I recall, the study samples were small, and the researchers felt the results were inconclusive.....Still, I've read a bit about acupuncture enlivening the nervous system, and that IS what I'm seeking right now, so.....I'm giving it a try. It's nice that acupuncture triggers the release of endorphins, but that's not my purpose (I'm not spending Big Bucks just to get a rush of endorphins). I've had two sessions, a week apart, and am going for a third this coming Friday. I felt energized for the first 24 hrs after each session, but I'm sure that was the endorphins working; so far I've not experienced any decrease in numbness. I'll keep you informed.
By the way, in case you have any unease about being stuck with a gazillion needles, I assure you it doesn't hurt (unless you happen to have a particularly "hot" spot, and even then it's only a momentary sensation; and a good acupuncturist will take care to avoid such spots on your first couple of visits so as not to scare you off). I've had several treatment sessions since 2007 (for conditions unrelated to the spine). Once all the needles are inserted, and I'm left lying on the table with soothing music playing, a great wave of relaxation washes over me.....it's wonderful.
-
Like -
Helpful -
Hug
1 ReactionI have been diagnosed with peripheral neuropathy my left side my foot and lower leg is numb no pain there but I also have tears in it tendon and gluteus . Not sure witch one is causing the knee pain
Welcome @chloew69, I assume you are talking about pain you are having in your left knee. Did you have any related injuries on your left side?
Your doctor might or might not be able to determine which of these factors is causing the knee pain. Either way, you'll probably be referred to PT. The therapist will put you through a series of exercises to identity the likely source(s) of pain in your knee. It could very well be that PN has weakened the muscles in the lower leg to the point where they can't support the knee properly. Alternatively, those tears you mentioned seem like good reasons your knee no longer functions painlessly.
How severe are those tears? I have no experience with such, so I can't offer any useful advice about them.
-
Like -
Helpful -
Hug
1 ReactionI have numbness without pain in both lower legs, feet and hands and tried acupuncture for 6 months and it did not help. But my PN is hereditary.
-
Like -
Helpful -
Hug
2 ReactionsThank you !! I will see my orthopedic Dr next week