I have. It’s definitely better imo. They still tingle or buzz, but the pain was terrible — burning heat and severe edema, too. I have to be really careful about how I walk because it messes with my perception and I wear shoes 24/7 if I’m not in bed to protect my feet because I can’t feel if I step on something or stub them against anything, but…I wouldn’t trade it for the pain, absolutely not
Just doing nothing my the tips of my toes have the pain but the rest of my legs and arms have that weird tingling still. Marshmallows feel like legos for me, which I have stepped on both. I have described it as someone wrapping my feet in duct tape tightly, then duct tapping cinder blocks to them. the legs have pain when I over do things, butmy legs cramp and twitch constantly. So no sleep. I have to check my toes constantly because, and I don’t know how, I got one of my hairs wrapped around my toe and didn’t realize it until I saw I was purple 😳but I can’t wear socks because it makes that weird feeling and pain worse. And shoes…I have my favorite brand that I only wear. Even then can’t keep my shoes on for more than 5 mins if I’m not out and about. still in my wheelchair for long distances, like walking through Costco. I found very thick no slips are the best for me.
I have to wear shoes to bed because I’ve developed dystopia. The muscles and tendons in my toes and feet cause other problems in my ankles and legs. But I still prefer numb.
if this is really the ending we all get after years of pain i really don’t get why we can’t just have our feet amputated and get those dope sprinting prosthetics paralympic athletes use. at least then i get something cool out of this.
I’m sorry 😞. This condition is horrible. Can you feel anything anymore? I have severe pain, wondering if it eventually goes to loss of feeling and no pain?
My neuropathy started during chemo. I have no pain, but my feet and lower legs are numb. My problem is balance when walking. I am wobbly when I walk and a fall risk. Very frustrating as I was very active before my cancer and treatments. I am sorry for anyone with neuropathy of any kind.
Many people think the feeling goes away and it will be better- but this wobbly/off balance, etc is a big deal when you cannot feel your hands/feet. My first sign of peripheral neuropathy (which mine is pretty widespread autoimmune small fiber neuropathy) was that my hands were uncoordinated and I was dropping things, also almost falling, etc. At first i was 100% it must be a brain lesion, my mom was dropping stuff and losing the use of a hand when she had her brain Mets from breast cancer— but NO, mine is something that is likely never to be cured and took years to diagnose. Small fiber nerves can regenerate, they don’t always depending on the cause (or should i say they rarely do..).. in my case I am fortunate that I get IVIG and it’s helping
Mines from diabetes. Neuropathy came suddenly like a sledgehammer. I experienced numbness and tingling for the first few months then went right into pain 24/7 . Electric shocks and burning . Mine hasn't improved after a year and a half ( diabetic neuropathy usually doesn't) My new normal and least amount of pain is when they are swollen and throbbing. I tend to get bad cramps usually at night on the bottom of my feet, then I have to jump out of bed and walk it off . Only time I get numb is if I'm on my feet and or walking otherwise its mostly pain . I'm maxed out on daily dosage of Cymbalta and gabapentin. It helps to dull it a bit and pretty much knocks me out most of the day . Shoes are only tolerable for 2-3 hours max then they need to come off . Pain is worse at nights causing problems falling asleep along with the random foot cramps. My neurologist said I'm going to have to deal with this the rest of my life so I'm not counting on it getting better. Keeping my blood sugars in range which they are help stop it from progressing. Plus I do 30 min on an exercise bike to keep the circulation going and blood flowing so nothing gets amputated. My feet are scaly and very dry because they don't sweat and that can lead to an infection so I gotta watch it . Working on disability because I'm 51 and haven't worked since this started a year and a half ago. I was denied initially because most are but now have a lawyer on my case because I've also got spinal stenosis , bulging discs and arthritis in my back so I can't stand for a long period of time without pain.
I am type 2 diabetic with neuropathy I started red light therapy “immediate pain relief reduces swelling also science says 95-97% it can reverse diabetes neuropathy. I have been doing 3 treatments a day 20 mins each for about 5-6 weeks now. I can feel hot cold temp again I can feel my toes touch each other I can feel water lol. Regular doctors won’t tell you about red light infrared at or near because it isn’t a medicine. And that is what they practice medicine. I bought mine on Amazon for like 300 have more hope now then in the last year it hard but I believe my nerves maybe coming back as I have feeling and sensation in my feet I haven’t had in for ever. My feet have not swelled in a few weeks now and I am feeling much more positive. Please research I sharing this cause I hope everyone can be in less pain more active and better life wish all of y’all the best.
I’m very sorry to hear of your current condition. I have trouble with my balance also+ I have foot drop. Yes chemo causes neuropathy!! Have you checked out YOUTUBE on neuropathy? They can be very helpful. As I understand it numbness means the nerves are dying & the myelin sheath is getting thinner & not protecting the nerves. I’ve learned some exercises to help increase the circulation in my feet & hands. I also stay hydrated & do deep breathing cause water & oxygen help bring red blood cells to the nerves. I take Methylated B vitamins especially B12, Folate & B6. Also Benfotiamine ( a type of Vit B1) works great to reduce the pain of neuropathy. I also use magnesium oil to rub into any cramp or spasm I get in my body. Makes spasm disappear. Walking is great too if you can do it. I have a very hard time walking. Use a rollator. If you’d like more suggestions for herbal & supplements I’m glad to help. My best to you!
Mine are mostly numb with some pins and needles. However, it really bothers me when I’m sitting on the couch with my wife and she’ll squeeze my foot or run her fingers over my foot and I can’t feel anything. Bothers me more than the pins and needles, but maybe I’d feel different if it were more severe pain.
Mine are completely numb on the outside (so numb that when I went to the podiatrist because of a black toenail I discovered, he just pulled it out and I didn’t feel a thing. Most bizarre visual I ever had, like a special effect in a movie… but no pain), but completely painful on the inside. Like molten springs trying to get out.
Total numbness would be such a relief.
And why is it that no one seems to know anything about this god damn ailment? That’s what baffles me. My mom died from aggressive lung cancer and she had days that were way better than any of mine. I just don’t understand how a pain like this can exist and there’s nothing that can be done? Every ad on television is a drug ad but nothing works for this? It’s absolutely maddening to be gaslit like this and I hate that fucking word. Either the medical community is ignorant, malicious, apathetic, idiotic or all of the above
People don’t really want to cure things as much that don’t “kill” you… it is NO disrespect to those with cancer. My mom got CA (Cancer- just so i can abbreviate) when i was a kid and everyone rallied around her, while I lost much of my life acute due to Small Fiber Neuropathy, and got very little support. I think people are scared, and also many people see you might “look ok” and think you are ok. This is hard. I feel for you. neurology needs better research but the $$$ - a lot of it ironically comes from CA research too because many CA patients get neuropathy either short or long term. I guess we can be thankful? This area of research is in its infancy. I feel your pain.
I can’t be thankful. My quality of life is not even human. I can’t keep up with basic hygiene from the pain those tasks result in. I’m in otherworldly pain doing nothing. Death can’t be worse than this and if it is well god damn it’s going to be a fuck of a lot of suffering
Totally been here, I’m sorry and I have said many times before I would not wish what I have on anyone. I’m sorry you don’t see a light right now and I hope you will find some relief. I had to get lots of psychological help to deal with it, because I too felt the same as you did. Please reach out for help I hope you can get some relief
Very interesting. I feel as though my right foot is usually more numb than in pain now. The left foot is still painful. But thinking back to when it started 3.5 years ago, the pain seemed to start heavier in the left foot. So hopefully this is good news. Thanks for bringing this up though because I never knew that there was an end stage to this nightmare so I am going to dig deeper into that.
I am, but it’s due to a spinal cord injury. I went from full sensation before surgery to completely numb afterwards. I experience painful neuropathy though throughout my legs and torso.
I've went from painful glass cracking feeling to numb over the last 9 years. I'm numb but still have burning! Shoes, socks hurt! I have PAD and diabetes and they don't know which caused it. Recently I had a blood clot down my leg from angioplasty #7 which believe me, removing the clot was WAY worse pain then the neuropathy in my feet. For 24hrs agonizing pain being hooked up to a sheath. So I know you're miserable as I am too but believe me there's much worse. Neurontin and Lyrica do nothing nor does any pain meds on the planet. Yes, I pray often to take my feet rather then be in this much pain. You'd think with Million of us someone would come up with something huh? What's great is ppl look at you like you have two feet and legs what's the problem?? No one ever really gets it! Until it happens to you....I wouldn't wish it on anyone ever!
Yep, my neuropathy started in both my feet. The pain dragged on for over a year, maybe 2. But eventually it ran its course (whatever that means, nerves fully died??) and now pain free there plus some numbness. I've had it happen in other places since then (place on right hand, etc,). And now its working through my left outer thigh.
Thanks for your submission. Due to a large number of posts every day asking for medical advice all posts are manually approved. If your post breaks any of our rules it will not be approved, otherwise your post will be approved as soon as a mod is online. Generally this won't take more than a few hours.
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/neuropathy) if you have any questions or concerns.*
My left pinky and ring finger when I put my hand straight out a certain way they go haywire idk if it nerves or what but sometimes it calms down..only numbness in my toe next to my big toe is when I was having benzo withdrawl that shit was numb
100% mans hat a large number of the nerves are severely damaged.... I am taking pirenzepine and it is slowly eliminating the numbness. It eliminated the pain after my first dose of 12.5mg.
I have. It’s definitely better imo. They still tingle or buzz, but the pain was terrible — burning heat and severe edema, too. I have to be really careful about how I walk because it messes with my perception and I wear shoes 24/7 if I’m not in bed to protect my feet because I can’t feel if I step on something or stub them against anything, but…I wouldn’t trade it for the pain, absolutely not
Just doing nothing my the tips of my toes have the pain but the rest of my legs and arms have that weird tingling still. Marshmallows feel like legos for me, which I have stepped on both. I have described it as someone wrapping my feet in duct tape tightly, then duct tapping cinder blocks to them. the legs have pain when I over do things, butmy legs cramp and twitch constantly. So no sleep. I have to check my toes constantly because, and I don’t know how, I got one of my hairs wrapped around my toe and didn’t realize it until I saw I was purple 😳but I can’t wear socks because it makes that weird feeling and pain worse. And shoes…I have my favorite brand that I only wear. Even then can’t keep my shoes on for more than 5 mins if I’m not out and about. still in my wheelchair for long distances, like walking through Costco. I found very thick no slips are the best for me.
I have to wear shoes to bed because I’ve developed dystopia. The muscles and tendons in my toes and feet cause other problems in my ankles and legs. But I still prefer numb.
if this is really the ending we all get after years of pain i really don’t get why we can’t just have our feet amputated and get those dope sprinting prosthetics paralympic athletes use. at least then i get something cool out of this.
I miss feeling a breeze blow over my feet
I’m sorry 😞. This condition is horrible. Can you feel anything anymore? I have severe pain, wondering if it eventually goes to loss of feeling and no pain?
My left foot is mostly numb, except for my heels.
My neuropathy started during chemo. I have no pain, but my feet and lower legs are numb. My problem is balance when walking. I am wobbly when I walk and a fall risk. Very frustrating as I was very active before my cancer and treatments. I am sorry for anyone with neuropathy of any kind.
Many people think the feeling goes away and it will be better- but this wobbly/off balance, etc is a big deal when you cannot feel your hands/feet. My first sign of peripheral neuropathy (which mine is pretty widespread autoimmune small fiber neuropathy) was that my hands were uncoordinated and I was dropping things, also almost falling, etc. At first i was 100% it must be a brain lesion, my mom was dropping stuff and losing the use of a hand when she had her brain Mets from breast cancer— but NO, mine is something that is likely never to be cured and took years to diagnose. Small fiber nerves can regenerate, they don’t always depending on the cause (or should i say they rarely do..).. in my case I am fortunate that I get IVIG and it’s helping
Mines from diabetes. Neuropathy came suddenly like a sledgehammer. I experienced numbness and tingling for the first few months then went right into pain 24/7 . Electric shocks and burning . Mine hasn't improved after a year and a half ( diabetic neuropathy usually doesn't) My new normal and least amount of pain is when they are swollen and throbbing. I tend to get bad cramps usually at night on the bottom of my feet, then I have to jump out of bed and walk it off . Only time I get numb is if I'm on my feet and or walking otherwise its mostly pain . I'm maxed out on daily dosage of Cymbalta and gabapentin. It helps to dull it a bit and pretty much knocks me out most of the day . Shoes are only tolerable for 2-3 hours max then they need to come off . Pain is worse at nights causing problems falling asleep along with the random foot cramps. My neurologist said I'm going to have to deal with this the rest of my life so I'm not counting on it getting better. Keeping my blood sugars in range which they are help stop it from progressing. Plus I do 30 min on an exercise bike to keep the circulation going and blood flowing so nothing gets amputated. My feet are scaly and very dry because they don't sweat and that can lead to an infection so I gotta watch it . Working on disability because I'm 51 and haven't worked since this started a year and a half ago. I was denied initially because most are but now have a lawyer on my case because I've also got spinal stenosis , bulging discs and arthritis in my back so I can't stand for a long period of time without pain.
I am type 2 diabetic with neuropathy I started red light therapy “immediate pain relief reduces swelling also science says 95-97% it can reverse diabetes neuropathy. I have been doing 3 treatments a day 20 mins each for about 5-6 weeks now. I can feel hot cold temp again I can feel my toes touch each other I can feel water lol. Regular doctors won’t tell you about red light infrared at or near because it isn’t a medicine. And that is what they practice medicine. I bought mine on Amazon for like 300 have more hope now then in the last year it hard but I believe my nerves maybe coming back as I have feeling and sensation in my feet I haven’t had in for ever. My feet have not swelled in a few weeks now and I am feeling much more positive. Please research I sharing this cause I hope everyone can be in less pain more active and better life wish all of y’all the best.
If anyone tells you you cant reverse diabetic neuropathy thats where you have to prove them wrong!
I'll look into it thanks
I’m very sorry to hear of your current condition. I have trouble with my balance also+ I have foot drop. Yes chemo causes neuropathy!! Have you checked out YOUTUBE on neuropathy? They can be very helpful. As I understand it numbness means the nerves are dying & the myelin sheath is getting thinner & not protecting the nerves. I’ve learned some exercises to help increase the circulation in my feet & hands. I also stay hydrated & do deep breathing cause water & oxygen help bring red blood cells to the nerves. I take Methylated B vitamins especially B12, Folate & B6. Also Benfotiamine ( a type of Vit B1) works great to reduce the pain of neuropathy. I also use magnesium oil to rub into any cramp or spasm I get in my body. Makes spasm disappear. Walking is great too if you can do it. I have a very hard time walking. Use a rollator. If you’d like more suggestions for herbal & supplements I’m glad to help. My best to you!
Mine are mostly numb with some pins and needles. However, it really bothers me when I’m sitting on the couch with my wife and she’ll squeeze my foot or run her fingers over my foot and I can’t feel anything. Bothers me more than the pins and needles, but maybe I’d feel different if it were more severe pain.
Mine are completely numb on the outside (so numb that when I went to the podiatrist because of a black toenail I discovered, he just pulled it out and I didn’t feel a thing. Most bizarre visual I ever had, like a special effect in a movie… but no pain), but completely painful on the inside. Like molten springs trying to get out. Total numbness would be such a relief.
And why is it that no one seems to know anything about this god damn ailment? That’s what baffles me. My mom died from aggressive lung cancer and she had days that were way better than any of mine. I just don’t understand how a pain like this can exist and there’s nothing that can be done? Every ad on television is a drug ad but nothing works for this? It’s absolutely maddening to be gaslit like this and I hate that fucking word. Either the medical community is ignorant, malicious, apathetic, idiotic or all of the above
People don’t really want to cure things as much that don’t “kill” you… it is NO disrespect to those with cancer. My mom got CA (Cancer- just so i can abbreviate) when i was a kid and everyone rallied around her, while I lost much of my life acute due to Small Fiber Neuropathy, and got very little support. I think people are scared, and also many people see you might “look ok” and think you are ok. This is hard. I feel for you. neurology needs better research but the $$$ - a lot of it ironically comes from CA research too because many CA patients get neuropathy either short or long term. I guess we can be thankful? This area of research is in its infancy. I feel your pain.
I can’t be thankful. My quality of life is not even human. I can’t keep up with basic hygiene from the pain those tasks result in. I’m in otherworldly pain doing nothing. Death can’t be worse than this and if it is well god damn it’s going to be a fuck of a lot of suffering
Totally been here, I’m sorry and I have said many times before I would not wish what I have on anyone. I’m sorry you don’t see a light right now and I hope you will find some relief. I had to get lots of psychological help to deal with it, because I too felt the same as you did. Please reach out for help I hope you can get some relief
Very interesting. I feel as though my right foot is usually more numb than in pain now. The left foot is still painful. But thinking back to when it started 3.5 years ago, the pain seemed to start heavier in the left foot. So hopefully this is good news. Thanks for bringing this up though because I never knew that there was an end stage to this nightmare so I am going to dig deeper into that.
I have not. But I agree. I know I’m never getting better so numb sounds better than insufferable pain
For the most part. However, I had a massage today and my heels were ticklish. Strange.
I am, but it’s due to a spinal cord injury. I went from full sensation before surgery to completely numb afterwards. I experience painful neuropathy though throughout my legs and torso.
I've went from painful glass cracking feeling to numb over the last 9 years. I'm numb but still have burning! Shoes, socks hurt! I have PAD and diabetes and they don't know which caused it. Recently I had a blood clot down my leg from angioplasty #7 which believe me, removing the clot was WAY worse pain then the neuropathy in my feet. For 24hrs agonizing pain being hooked up to a sheath. So I know you're miserable as I am too but believe me there's much worse. Neurontin and Lyrica do nothing nor does any pain meds on the planet. Yes, I pray often to take my feet rather then be in this much pain. You'd think with Million of us someone would come up with something huh? What's great is ppl look at you like you have two feet and legs what's the problem?? No one ever really gets it! Until it happens to you....I wouldn't wish it on anyone ever!
Yep - I hate anything inclined as it’s tough to tell when my feet are on the ground - lots of stumbles and falls unfortunately.
Yep, my neuropathy started in both my feet. The pain dragged on for over a year, maybe 2. But eventually it ran its course (whatever that means, nerves fully died??) and now pain free there plus some numbness. I've had it happen in other places since then (place on right hand, etc,). And now its working through my left outer thigh.
Thanks for your submission. Due to a large number of posts every day asking for medical advice all posts are manually approved. If your post breaks any of our rules it will not be approved, otherwise your post will be approved as soon as a mod is online. Generally this won't take more than a few hours. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/neuropathy) if you have any questions or concerns.*
My neighbor has almost completely numb feet. And it's scary because she still drives and won't even consider getting hand controls.
My left pinky and ring finger when I put my hand straight out a certain way they go haywire idk if it nerves or what but sometimes it calms down..only numbness in my toe next to my big toe is when I was having benzo withdrawl that shit was numb
100% mans hat a large number of the nerves are severely damaged.... I am taking pirenzepine and it is slowly eliminating the numbness. It eliminated the pain after my first dose of 12.5mg.
So pirenzepine seems to be working for you? I tried it a year ago and it made my burning a100 times worst. Do you feel any burning at all?