Does neuropathy ever go away

Posted by moonshinecat6 @moonshinecat6, Feb 11 6:27pm

Does neuropathy ever go away

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Profile picture for heisenberg34 @heisenberg34

I am of the mind that a better answer to this question of neuropathy going away might be, "Not yet". There are always studies, trials, and such going on. A breakthrough may be just around the corner. Of course we who are older and afflicted may never get to see around the corner. But, we should never stop searching. What we do today may help the younger generation. Neuropathy is something I had never even heard of until about two years ago. Now I am struggling with severe pain, tingling, burning that has not been touched by meds or my pain pump. I truly hope that some treatment comes along soon that will give at least some relief from this terrible thing that robs of us of our joy.

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@heisenberg34
And I'm fortunate that one of the Physician Assistants who has treated me is of the same mind as you and referred me to Neurology to get a baseline with the idea that even if there isn't a cure today, you never know what might be down the road.
Like you, the term "neuropathy" just entered my vernacular a mere 3 years ago. And now I've added a new one - polymyalgia rheumatica (PMR).
I so appreciate Mayo Connect to run across similar stories.

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Profile picture for heisenberg34 @heisenberg34

I am of the mind that a better answer to this question of neuropathy going away might be, "Not yet". There are always studies, trials, and such going on. A breakthrough may be just around the corner. Of course we who are older and afflicted may never get to see around the corner. But, we should never stop searching. What we do today may help the younger generation. Neuropathy is something I had never even heard of until about two years ago. Now I am struggling with severe pain, tingling, burning that has not been touched by meds or my pain pump. I truly hope that some treatment comes along soon that will give at least some relief from this terrible thing that robs of us of our joy.

Jump to this post

@heisenberg34 I had never heard about it either until two years ago. It was perplexing at first but manageable. Then I had back surgery and the symptoms increased. Diagnosed with mild axonal neuropathy. Doesn’t feel so mild especially now up to my knees. I’ve tried advertised cures, waste of money. I have autoimmune diseases which I was told may be the cause. I’m now going to try Alpha Lipoic Acid and B vitamins. Just have to take it at least 4 hours after other meds. I also sometimes use CBD cream on my feet and knees which seems to help a bit. Massage doesn’t really help. Cbd gummies and melatonin help to sleep.

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Profile picture for aml25 @aml25

@heisenberg34 I had never heard about it either until two years ago. It was perplexing at first but manageable. Then I had back surgery and the symptoms increased. Diagnosed with mild axonal neuropathy. Doesn’t feel so mild especially now up to my knees. I’ve tried advertised cures, waste of money. I have autoimmune diseases which I was told may be the cause. I’m now going to try Alpha Lipoic Acid and B vitamins. Just have to take it at least 4 hours after other meds. I also sometimes use CBD cream on my feet and knees which seems to help a bit. Massage doesn’t really help. Cbd gummies and melatonin help to sleep.

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@aml25 I guess that most of the time we don't know the cause of our neuropathy. I just had lower back pain until about two years ago. I had a trial of a new spinal cord stimulator. They were "digging around" my back to try and get the leads in place. Two months later, all this new pain showed up. Idiopathic peripheral neuropathy they told me. No identifiable cause. Gotta wonder though. Now, my feet burn, my ankles and back of my legs burn and hurt. Like you, I have tried a number of neuropathy creams to ease the burning, but none have helped. I find that my prayer time has become more intentional. Sometimes I feel like Job who was a righteous man before God but had to suffer many trials and suffering. But God eventually restored him.
I hope you can find something that helps. What would you say your average pain level is?

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No.... Mine started during covid...whether its covid related or the excess drinking during covid or ??? There are good days and bad...
Better shoes help to keep you on your feet longer:
New Balance 1080's are like walking on marshmallows
Hokias I like the Clifford 9
Trying the Skeecher Slip ons go with Max-Comfort walking shoes.. comfort more like Hokia's but roughly half the cost on Amazon
But nothing beat New Balance 1080's for soft walking

I tried gabapin(sp?) and once I got to a dose that actually helps it made me unsteady on my feet..I quit it...
I tried foot cream pain removers...helps a little ...helps to sleep.. I don't need it anymore
R-ALA to be honest I think it makes it worse for me.... But I do take it off and on and only for about 30 days and take a break...
Watch out for B vitamins...Some help and too much makes it worse..
I've tried everything... even those foot shockers you put your feet on
Heat makes mine worse... the cool tile and wood floors in my house feel good lol
Your best friend and help is this.........Learn to adjust to the pain...tune it out!... and short breaks off your feet
We went too Disney Land one year and Universal Studio and walked 20 miles that day....ever so often I would need to sit down and everyone understood and needed a break too lol,, If I have like 5-15 min break(depending how bad it gets) I'm ready to go, yes mine subsides quickly ,,, it didn't always do that but I've probably did/quit enough good things(like drinking) and taking the right vitamins that its helped in someway..

But so you understand...in the summer when I mow the grass mine can get bad.. enough where sitting doesn't help, I have to lay down... whether its a circulation thing or not ? I don't know.. but laying down is when its bad and its like 15-20 min before it goes away...
So mine isn't any worse or better than most I've just learn to deal with it...

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Profile picture for lgort5 @lgort5

I keep reading about this awful condition which I have with pain and burning in my legs, and nothing cures it. Resignation to it makes me feel like giving up but I won't. I walk, have changed my diet and take ALA and Magnesium glyconate. Use CBD on my feet at night and wear socks. Not a charming bedtime attire but its helping so far!

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@lgort5 You are a warrior, my friend! I love your attitude. Keep on keeping on. You never know when something will come along to help those of use afflicted with this awful condition.

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Profile picture for aml25 @aml25

@heisenberg34 I had never heard about it either until two years ago. It was perplexing at first but manageable. Then I had back surgery and the symptoms increased. Diagnosed with mild axonal neuropathy. Doesn’t feel so mild especially now up to my knees. I’ve tried advertised cures, waste of money. I have autoimmune diseases which I was told may be the cause. I’m now going to try Alpha Lipoic Acid and B vitamins. Just have to take it at least 4 hours after other meds. I also sometimes use CBD cream on my feet and knees which seems to help a bit. Massage doesn’t really help. Cbd gummies and melatonin help to sleep.

Jump to this post

@aml25 Melatonin disagrees with me. I like gummies, but I think that they are contraindicated with Eliquis. So I just have to hang in there and hope that I can completely taper. Disrupted sleep is not new to me, so I just do the best to stay on a regular schedule, eat well and try to reduce stress any way that I can.

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No, it will never go away. But it is something we can learn to live with. It does take a little effort. Although my issue is only on one side of my leg and foot, my biggest issue is with managing stairs. I have no feeling at all in the toes on my left foot. When I take the stairs, I only know my foot has hit the ground when I feel the pressure in my knee. Whenever I go up and down a set of stairs, I definitely need to hold onto something or I will fall. I have been using a treadmill and also a recumbent to make sure my back and legs remain strong. I also have spinal stenosis in my back. I exercise to keep the numbness and lack of stability at bay, as well as strengthening my muscles. So far it is working for me. When it does become apparent that I need more assistance, I have a cane and a walker ready to go. I have no problem using those devices if it means being able to continue to get out and about. I will be 75 in a couple of months and have a lot of life left in me. I will not let a little numbness or pins and needles spoil my life. Rather than think about what I can't do, I spend a lot of time thinking about what I can do. Always think about the positive. Good luck to all that deal with the pain and numbness.

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Profile picture for pah17 @pah17

@aml25 Melatonin disagrees with me. I like gummies, but I think that they are contraindicated with Eliquis. So I just have to hang in there and hope that I can completely taper. Disrupted sleep is not new to me, so I just do the best to stay on a regular schedule, eat well and try to reduce stress any way that I can.

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Try Benadryl.

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Profile picture for heisenberg34 @heisenberg34

@aml25 I guess that most of the time we don't know the cause of our neuropathy. I just had lower back pain until about two years ago. I had a trial of a new spinal cord stimulator. They were "digging around" my back to try and get the leads in place. Two months later, all this new pain showed up. Idiopathic peripheral neuropathy they told me. No identifiable cause. Gotta wonder though. Now, my feet burn, my ankles and back of my legs burn and hurt. Like you, I have tried a number of neuropathy creams to ease the burning, but none have helped. I find that my prayer time has become more intentional. Sometimes I feel like Job who was a righteous man before God but had to suffer many trials and suffering. But God eventually restored him.
I hope you can find something that helps. What would you say your average pain level is?

Jump to this post

@heisenberg34 I apologize because I don't know. It's worse when I'm sitting like now at my computer or trying to relax after dinner watching TV. The hardest time is during the night. The rest of the time I'm so busy I just shelf it. I give God thanks that I have come through some tough situations and I offer my prayers to those who suffer more. My neurologist feels being active is super helpful; being a former runner I now walk about 2 1/2 miles everyday. I'm sure it helps me.
Neuropathy research is being done but as far as I know for Diabetics and those on Chemo only.

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Profile picture for aml25 @aml25

@heisenberg34 I apologize because I don't know. It's worse when I'm sitting like now at my computer or trying to relax after dinner watching TV. The hardest time is during the night. The rest of the time I'm so busy I just shelf it. I give God thanks that I have come through some tough situations and I offer my prayers to those who suffer more. My neurologist feels being active is super helpful; being a former runner I now walk about 2 1/2 miles everyday. I'm sure it helps me.
Neuropathy research is being done but as far as I know for Diabetics and those on Chemo only.

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@aml25 There is an organization called The Foundation for Peripheral Neuropathy. New studies are being conducted all the time for answers to this plague. They don’t get big bucks from the government so it’s slow going. You can check them out by doing a search on this site. We are all in this thing together, amigo. If you have any questions about the treatments I have had, ask away.

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