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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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Hello Maura @mauras, Welcome to Connect. Thank you for the private message. I hope you don't mind but I thought I would respond to your private message in this discussion so that you can meet other members who share your symptoms - Neuropathy: Numbness only, no pain (https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/). I apologize for such a long response and hopefully you will correct me if I misstate anything you told me in your private message.
You mentioned your journey started about 15 years ago being diagnosed with sensory Guillain-Barre syndrome which was treated with a high dose of IV methylprednisone. You mentioned the treatment cleared up your symptoms within days and the doctor suspected a bad respiratory virus had kicked off the immune response. It occurred again about a year later and the same treatment cleared it up again.
You also mentioned having a work up with a new neurologist and after having a normal EMG the neurologist was able to compare a skin punch biopsy from 15 years ago to a current one she ordered. The result of the new skin punch biopsy was that you have small fiber neuropathy.
If I read your message correctly, your main concern is not your condition has slowed you down and you can no longer do some of the things the way you used to be able to do them. Your main worry is that along with your current symptoms, you will start having more pain and you wanted to know if I could share my thoughts and perspective. I am more than happy to share my thoughts and perspective as someone who had that same fear of my condition getting worse. Actually that is what finally drove me to setting up an appointment with a Mayo neurologist for a diagnosis after 20+ years of living with the numbness getting a little worse each year. My worse fear was not being able to drive anymore. After my meeting with the neurologist and being told there aren't any magic bullets (topicals, creams, medications, etc.) that will help with the numbness like they can with pain, I went away pretty discouraged. I decided I needed to do my own research and learn as much as I can about my health conditions which is what led me to Mayo Clinic Connect and started me on my journey learning about neuropathy. I was also fortunate enough to have been a member of the Minnesota Neuropathy Association before it disbanded a few years ago. It was good to have a local support group and be able to talk about your symptoms and what has helped as well as what didn't help.
My best suggestion that I can offer you is to take each day one at a time and learn as much as you can about your symptoms and condition. My two favorite sites for neuropathy information:
-- Neuropathy Commons: https://neuropathycommons.org/
-- The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Google Scholar for finding medical research information: https://scholar.google.com/
On another note, your mention of GBS starting your journey but being cleared up with methylprednisone made me curious and I found some information from 2020 that may spark your interest.
-- A Rare Case with New Insights: Pure Sensory Guillain Barre Syndrome with Axonal Features: https://www.dovepress.com/a-rare-case-with-new-insights-pure-sensory-guillain-barre-syndrome-wit-peer-reviewed-fulltext-article-IMCRJ
One of the things I know can cause a lot of fear in folks is searching the Internet and finding worst case information that may or may not be credible. There is a lot of misinformation on the Internet so job one for all of us is to make sure the information is from credible sources. There is a good discussion on this topic here - How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/
Have you looked into any alternative therapies or made any lifestyle changes to help with your symptoms?
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1 Reaction@johnbishop What lifestyle changes do you suggest? I have gone from just numbness to now experiencing some very sharp pains in my feet, mostly at bedtime or when relaxing after a long day. The numbness makes my feet feel like I am wearing a pair of socks all the time.it stops just about where ankle socks would.
@suzanne2, I am always looking for things I can do that might help with the numbness in my feet which is part of my idiopathic small fiber peripheral neuropathy. I shared my neuropathy journey in another discussion here https://connect.mayoclinic.org/comment/310341/.
I think a lot of what you can do to help yourself depends on the cause of why your feet are numb. Have you been diagnosed with neuropathy?
Most of the lifestyle type changes I've made have been to focus on protecting my feet and keeping them as healthy as possible. I have to wear compression socks during the day to help with the swelling in my legs from lymphedema. When I take them off at night my legs feel great and the last thing I want to do is put on socks but an unfortunate night time incident of rubbing my feet together and a big ugly toenail inflicted wound on a vein too close to the surface of my ankle caused me to almost bleed out while sleeping. It caused a trip to the ER and I've learned to pay more attention to my feet. Every night before going to bed I rub skin lotion on my feet and put on a pair of white ankle socks so that I can easily tell if I have stepped on something during the night. By far the most comfortable socks I've ever had are bamboo fiber ankle socks. They are more stretchy without putting pressure on the feet. I have tried essential oils on my feet which I think were good for the skin and moisturizing but didn't help much with the numbness. The other significant lifestyle change I have made is to try and eat healthier and lose a little more weight.
The Foundation for Peripheral Neuropathy has some Complementary and Integrative Therapies which may offer some ideas that help - https://www.foundationforpn.org/living-well/integrative-therapies/
Here's some more information you might find helpful - Causes of numbness in legs and feet: https://www.medicalnewstoday.com/articles/321560
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1 Reaction@johnbishop Thanks so much for the detailed answer to my inquiry. A lot of information from someone who also deals with the problem and understands what it is.
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1 ReactionMy problem came back. in 2019 my feet felt weird, toes and the ball of my feet didn't feel right. Would get burning pain when I slept from my legs all the way up my body but when standing everything went away. Had neurology tests, went to rehab as I was losing balance. Suddenly it went away and now the feet are acting the same way again. Sleeping causes burning tingling, numbness but getting up goes away. I do have degenerative disease in neck and spine but not sure if that is what is causing it and how to treat it. The only thing neurologist said was that I had carpal tunnel syndrome in my right arm which I didn't know I have and never bothered me. Confusing!
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1 ReactionI too have started experiencing sharp pains, usually at bedtime, starting after about 2 months into my IVIG infusions for my CIDP. I'm taking this as hopefully a good sign that maybe some function is coming back to my nerves!! I still have numbness and having more pins and needles feeling in my feet, and balance problems. I have had AFOs for about 2 months now that have helped greatly with my walking.
@johnbishop I want to thank you again! I just tried the massaging you mentioned in your reply and it felt so good to my feet. Had some foot cream and did it at bedtime. It really helped lessen the pain I have been having. I will continue doing this.
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1 ReactionHere is the short story - I developed neuropathy in both by feet at the age of 41. I went to see neurologist in the UK (*8), Germany (*1), nobody could identify the cause or stop the pain.
I eventually went to USA for nerve decompression surgery, I paid ~40k for two operations - they didn't really work - at first I had some relief, then after a month or so I was back to normal in terms of the pain.
I came back to the UK, I then suffered with a significant amount of anxiety/depression - I found the physical side of the pain and the emotional distress too much to live with both the moment and I had a fear for my future, I really wanted to end my life, being the father of two amazing kids this is hard for me to admit, but if it wasn't for them then I wouldn't be here now.
I lived in the hope that I would find myself a way through this, the hope came in the form of the protocol 525, it has literally saved my life!
After 3 months of taking the protocol 525 the relief of pain was unbelievable - my recovery continues. I love everyday, I am naturally happy and I don't have pain in my feet stopping me from enjoying each day nor do I have anxiety of the future. I feel lucky to still be here, and forever grateful for Bob who created the protocol 525 - he is a special guy.
If anyone wants to speak to me about my journey then please reach out, just send me a message and ill share my mobile number and we can talk..
I find it sad/heart-breaking that fundamental backing/support from our medical community isn't behind the protocol 525 rather than their endeavour to just prescribe drug after drug.
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4 ReactionsHi John @evansjohn007, Welcome to Connect. Thank you for sharing how the Protocol 525 has helped you obtain a new normal without the pain from neuropathy. I started another discussion on the Protocol 525 and also shared my story there. Although I have never had pain with my small fiber PN, the protocol has helped me some with the numbness and I actually think it has stopped the progression of the PN in my feet. My feet feel a little better every day.
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/
Now I get to spend all of my time learning ways to improve other areas of my health and no longer worry about the PN. Have you made any other lifestyle changes since starting the Protocol 525?
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1 ReactionI’m so glad I found this discussion- I thought I was the only person with neuropathy but no pain. Drs dismissed me or said to use compression stockings. But my leg skin is too thin & they made me bleed. I find tai chi very helpful & now at 83 I do it in the swimming pool. No trouble driving. In fact, when barefoot it feels like I’m wearing shoes. I have lupus as well & at the beginning arthritis so bad I hobbled, not walked. That was 43 yrs ago but with help from reflexologist I can wear regular shoes-no heels- in a D width
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