Neuropathy: Numbness only, no pain

I too have numbness with no pain. I see lots of discussion about feet and balance problems but little or none about problems with numbness in hands.. I can no longer touch type, or button my shirt without a button hook, and my handwriting is getting worse. My father and one sister eventually couldn't write, then later feed themselves. Anyone else having similar problems.

I too have numbness with no pain. I see lots of discussion about feet and balance problems but little or none about problems with numbness in hands.. I can no longer touch type, or button my shirt without a button hook, and my handwriting is getting worse. My father and one sister eventually couldn't write, then later feed themselves. Anyone else having similar problems.

I haven’t been tested for SFN but have been told I do not have it based on my EMG saying it was a different idiopathic PN. I have numbness in hands/lower arm and feet/lower legs, but with pain and tingling if I don’t keep it in check with Gabapentin.
I went from “healthy” to crippled by PN in about 10 days. No walking, feeding, dressing, typing, writing, wiping myself etc. Almost a vegetable, and institutionalized for 7 weeks with extensive PT and OT.
The therapies were tough, but with special designed eating utensils, I was able to feed myself. With continued concentrated home then outpatient PT and OT and a lot of practice, I can now get by with my hands and feet; far from perfect, but so great compared to that dark period. I have to improvise on how to get things done, and assess the importance of what I’ll risk injuring myself for or spending excessive time on.
I avoid buttons and shoestrings. Velcro, zippers, pullovers, and slip-on shoes help. Typing (with big computer buttons vs cell phone) over writing. I avoid childproof stuff as much as I can choose and use grippers when opening jars. Ziplock over the storage bags you have to line up and press until you get it right. I haven’t found a way to use Tide Pod packages; I buy one large container and have someone open it for me then I transfer them to a ziploc I am able to use. Even their pods sold in the sealed bags are made so kids can’t open them & eat them, so it means I can’t either. Newspapers are a thing of the past for these hands, but I still prefer paper books over reading on a tablet, so I still manage that.
I drop a lot, have to make sure my utensils are positioned correctly, and watch what I’m doing. I do try to avoid having to cut with very sharp knives. I make a lot of mistakes. I no longer take a terrible amount of time to keep backspacing to correct errors, I just let a lot of them go; I have to decide best use of time sometimes. I can drive right now and am beyond-belief grateful!
So, I think physically my disease started out at that rock bottom you talk about getting to, but with hard work and great therapy, I climbed so far up from there. Nobody knows for sure what’s ahead, but I’ll continue keeping my exercises going and living life smartly to avoid injuring myself and hopefully have an edge if things start declining.

I don't have much numbness in my hands but do have a little. I have a little bit of the shakes when using a mouse and my touch typing leaves a lot to be desired but I just keep doing what I can. Writing is another problem. I've pretty much given up cursive and handprint notes, letters and checks. I can still sign my name but it can look pretty rough sometimes 🙂 Just taking it one day at a time and practicing the senior shuffle when walking outside in the winter. I mostly wear pull over shirts with 1/4 zippers or just pull overs so that helps with buttons.

I haven’t been tested for SFN but have been told I do not have it based on my EMG saying it was a different idiopathic PN. I have numbness in hands/lower arm and feet/lower legs, but with pain and tingling if I don’t keep it in check with Gabapentin.
I went from “healthy” to crippled by PN in about 10 days. No walking, feeding, dressing, typing, writing, wiping myself etc. Almost a vegetable, and institutionalized for 7 weeks with extensive PT and OT.
The therapies were tough, but with special designed eating utensils, I was able to feed myself. With continued concentrated home then outpatient PT and OT and a lot of practice, I can now get by with my hands and feet; far from perfect, but so great compared to that dark period. I have to improvise on how to get things done, and assess the importance of what I’ll risk injuring myself for or spending excessive time on.
I avoid buttons and shoestrings. Velcro, zippers, pullovers, and slip-on shoes help. Typing (with big computer buttons vs cell phone) over writing. I avoid childproof stuff as much as I can choose and use grippers when opening jars. Ziplock over the storage bags you have to line up and press until you get it right. I haven’t found a way to use Tide Pod packages; I buy one large container and have someone open it for me then I transfer them to a ziploc I am able to use. Even their pods sold in the sealed bags are made so kids can’t open them & eat them, so it means I can’t either. Newspapers are a thing of the past for these hands, but I still prefer paper books over reading on a tablet, so I still manage that.
I drop a lot, have to make sure my utensils are positioned correctly, and watch what I’m doing. I do try to avoid having to cut with very sharp knives. I make a lot of mistakes. I no longer take a terrible amount of time to keep backspacing to correct errors, I just let a lot of them go; I have to decide best use of time sometimes. I can drive right now and am beyond-belief grateful!
So, I think physically my disease started out at that rock bottom you talk about getting to, but with hard work and great therapy, I climbed so far up from there. Nobody knows for sure what’s ahead, but I’ll continue keeping my exercises going and living life smartly to avoid injuring myself and hopefully have an edge if things start declining.

Deb - I am amazed on how much this peripheral neuropathy has impacted us so differently. Sounds like you were slammed up against a wall and on the other side of the coin, mine took years to develop. I'm also amazed at the stories I see on Mayo Connect on how we are all coping with this in our own way. Seems we each have to figure out what we need to do to get by and hope that tomorrow, we will be able to continue doing what we did today. Most of us over time realize there is no fix. This numbness can drive me crazy at times and with many others it is pain. You have figured things out as you go so keep climbing upward and don't give in or give up. Many of us need to do the same.

Actually, I climbed out of the "traumatic" onset from 6 years ago, but the progress did plateau at some point, about 50% of where I started. I know it will not improve from here (unless there's a miracle discovery) so I'm just in a fight to maintain this level. But it's a cycle of ups and downs, and I've accepted that I won't get better, but what I've learned from folks on here as given me a quality of life I otherwise wouldn't have!

lecowing - Yes, similar issues - I have given up wearing button down collars on shirts and although majority of numbness is south of knees to toes, I now dump pills on a towel otherwise I'm chasing capsules across the table. My handwriting is terrible, so I now print everything and even that, at times, is questionable. I also have loss of strength in hands.... bottle caps are a problem. All hand issues in past 2 - 3 years and very gradual, unfortunately, like the feet. On the numbness, I've also tried CBD cream on ankles, feet, hands with no help. I did find it helps on lower back pain. Any recommendations for numbness reduction would be great! Ed

For me, I am on several medications and serious numbness—can literally squeeze my toes or poke them with a pin with no feeling. Toes to thighs and forearm to fingers are at varying degrees of numbness. I am on several meds including Lyrica and Tramadol, That still leaves me with burning legs and feet—the only relief for that is a CBD balm with some essential oils. Relief is very quick and usually works for 6-8 hours. Some companies, like Lazarus, give large discounts for ability to pay and military service.