Extreme pain in my feet. Neuropathy

Posted by jim777 @jim777, Mar 31, 2023

This started in Aug. 2008 at age 43, I put my sneaker on and it felt like the sock was bunched up at the tip of my big toe. Adjusted the sock and it was still there, checked the sneaker and found nothing. I finally went to buy new sneakers and thats when concern set in, it was the same feeling when trying on new sneakers. No pain at this time. a few months went by and felt some discomfort in my toes in both feet, my doc sent me to a foot doc, he said it wasn't my feet but something effecting my feet, maybe my lower spine? The discomfort in my toes/ball of my feet stared becoming painful as time went on. in 2011 I went to see a neurologist, got an MRI and there was some issues but nothing major, also no diabetes. I basically got nowhere. The pain would start in the afternoons and night. When I woke up it would go away, my feet almost felt normal but sometime in the afternoon it would start, pain level was low to midrange. I started putting a large blue gel icepack around my foot at night while in my recliner, switching off each foot. The cold would help. That eventually led to putting my feet in a foot basin with ice and water. The pain gradually got worse. In 2021 it finally moved from only being on my toes/ball of my feet to my arch and top of my foot. Took a chance with the neurologist again but got nowhere. in 2022 I started to get sharp stabbing/electric jolts, not all the time, some days nothing, then one toe would get a shard stab every 5-10 minutes. When this happens its usually the same place, the next time a different to. It seems to now effect my legs from the knee down. Sometimes when in the recliner my calves feel discomfort. I never had a lot of hair on my legs and the hair was a light color, almost white but I notice there is no hair from my knee down. Early this year it moved to my hands. Not nearly as bad as my feet and sometimes they dont bother me. The odd thing is warm water makes them feel better when they hurt where as my feet ice water takes some of the pain away.

A few notes. Does not effect my motor skills and never had pins and needles. Ove the last 8 yrs I've tried Tramadol, then went to Neurontin and now Lyrica. Now of them help with the pain. The only thing that helps is Percocet but cant get a permanent script for that. I actually have a few but dont take them because of the Lyrica(Pregabalin), 200mg 3 times a day. Money is an issue to, no insurance. I also tried the usual like ALA, B1, b12, turmeric etc I spent a lot of money over the yrs, nothing ever worked. The burning part I thought may be Erythromelalgia which it cold still be along with neuropathy. Whats the pain like at times? I tell my wife its like getting your foot run over by a truck, them having boiling water poured on it. Its two pains, a deep nerve pain with a burning pain.

Anyone have a similar experience? I just want pain relief and to fix this issue. Any help would be greatly appreciated.

Interested in more discussions like this? Go to the Neuropathy Support Group.

@julkun

And my prayers are with you. The interesting part is that there is no one full proof solution and what is good for one person is not necessarily good for another. Try EVERYTHING, especially if it doesn't hurt financially. My A1C is middle 6 or even low 6 but neuropathy lives on. While I pray for you, I pray for all our close family members that have to live with us and see our suffering. My day ends when my severe pain begins.

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I too have type 2 diabetes with an A1C of mid sixes by doctor seems pleased with that but he doesn't realize that I have high levels at night and occasionally in the morning but because because of whatever reason my A1C stays at Mid 6s my endocrinologist wants me to test four times a day after meals and in the morning but Medicare won't give me the strip so I'm going to buy the inexpensive strips at CVS I have been using them to check at night to try to keep from going over I'll be starving to death and then when I check I'm I will be on 180 to 200 on my glucose meter and I'll go grab a bottle of water I try to eat blueberries mixed berries I eat a lot of avocados all these things help because I do have a little a little high cholesterol and in my HDL my LDL have been improving I do make spinach and banana smoothies and try to offset the sugar Cravings that overcome me especially in the morning when I have my coffee I need to stop that I promise the Lord I would and the caffeine I've read is not good for the nerves and your body that aggravates the neuropathy pain also also salt and sugar one person at the American diabetic Association told me that caffeine was not good for a diabetic that had neuropathy another person told me when I called back later on to get further clarification that they didn't have any information on it my doctors told me it's okay to have a cup of coffee so I get different answers from different people even my endocrinologist God bless you and I pray that you have great success I'm praying to go to Loma Linda's neuropathy Clinic and they claim that they have success and rejuvenating nerves and it's not really that expensive although Medicare won't cover it yet because it's a new Cutting Edge technology

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@cgs

I too have type 2 diabetes with an A1C of mid sixes by doctor seems pleased with that but he doesn't realize that I have high levels at night and occasionally in the morning but because because of whatever reason my A1C stays at Mid 6s my endocrinologist wants me to test four times a day after meals and in the morning but Medicare won't give me the strip so I'm going to buy the inexpensive strips at CVS I have been using them to check at night to try to keep from going over I'll be starving to death and then when I check I'm I will be on 180 to 200 on my glucose meter and I'll go grab a bottle of water I try to eat blueberries mixed berries I eat a lot of avocados all these things help because I do have a little a little high cholesterol and in my HDL my LDL have been improving I do make spinach and banana smoothies and try to offset the sugar Cravings that overcome me especially in the morning when I have my coffee I need to stop that I promise the Lord I would and the caffeine I've read is not good for the nerves and your body that aggravates the neuropathy pain also also salt and sugar one person at the American diabetic Association told me that caffeine was not good for a diabetic that had neuropathy another person told me when I called back later on to get further clarification that they didn't have any information on it my doctors told me it's okay to have a cup of coffee so I get different answers from different people even my endocrinologist God bless you and I pray that you have great success I'm praying to go to Loma Linda's neuropathy Clinic and they claim that they have success and rejuvenating nerves and it's not really that expensive although Medicare won't cover it yet because it's a new Cutting Edge technology

Jump to this post

Hi @julkun -- I see you mentioned having to test with strips four times a day. I really don't like pricking my finger when I have neuropathy. It's like slamming my finger in a door and my finger is not always a giver. Have you tried one of the sensors you put on the back for your arm? Painless. I use FreeStyle Libre 14 (lasts 14 days). I didn't like FreeStyle Libre 2 because of alarms waking me up and interrupting all the time. It's not covered by my insurance, but with the GoodRx discount I pay $75 for a month. It doesn't hurt at all to put it on. I can now check my blood sugar as often as I want and it keeps a graph recording for the past 8 hours if you haven't scanned with your phone recently. Even if you only try for one month, it really helps you determine how each food affects your blood sugar. You do have to download an app on your phone. You need an iPhone 7 or new model. Not sure about other brands. Maybe your doctor has a free sample to give you? Good luck!

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@californiazebra

Hi @julkun -- I see you mentioned having to test with strips four times a day. I really don't like pricking my finger when I have neuropathy. It's like slamming my finger in a door and my finger is not always a giver. Have you tried one of the sensors you put on the back for your arm? Painless. I use FreeStyle Libre 14 (lasts 14 days). I didn't like FreeStyle Libre 2 because of alarms waking me up and interrupting all the time. It's not covered by my insurance, but with the GoodRx discount I pay $75 for a month. It doesn't hurt at all to put it on. I can now check my blood sugar as often as I want and it keeps a graph recording for the past 8 hours if you haven't scanned with your phone recently. Even if you only try for one month, it really helps you determine how each food affects your blood sugar. You do have to download an app on your phone. You need an iPhone 7 or new model. Not sure about other brands. Maybe your doctor has a free sample to give you? Good luck!

Jump to this post

Thank you for your information and I'm sorry to hear you have so much trouble with the pain on testing with your hands. My hands are starting to get neuropathy but they don't hurt that bad yet.When I went to my endocrinologist she wanted to put me on a continuous glucose monitor. Medicare won't pay for it they also turn down the four strips a day they will only give me one strip a day. I'm going to use a 3-month supply to get the information for my endocrinologist and write it down on paper so she can get a better picture of my blood sugar. I sometimes tend to be low in the morning and in the afternoon it will be low but then at night time is can Skyrocket if I dont test before eating a snack I feel like I need ..probably because sometimes I eat the wrong things during the day. I'm trying really hard, I eat blueberries, I eat avocados, I try to eat spinach sometimes and salads. I eat Ezekiel 4:9 bread it has no flour and it's no preservative I really like it I toast it and put peanut butter on it. My A1C is not really the best gauge at what my glucose level is, up and down spikes, thanks for the advice about GoodRx I'll look into that. One thing that I do when I run out of my test strips from Medicare for my meter that they supplied ..I bought a $10 meter at CVS and I can get 25 strips for a little over $6 and I've gotten them free before by using some of the coupons from CVS God bless you I pray that I get to go to Loma Linda Medical University neuropathy Clinic as the neuropathy in my feet and legs is getting worse because they have had to raise my Gabapentin. I don't want to reach the limit.Loma Linda claims that they've had success rejuvenating dead nerves thanks again God bless you

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@californiazebra

Hi @julkun -- I see you mentioned having to test with strips four times a day. I really don't like pricking my finger when I have neuropathy. It's like slamming my finger in a door and my finger is not always a giver. Have you tried one of the sensors you put on the back for your arm? Painless. I use FreeStyle Libre 14 (lasts 14 days). I didn't like FreeStyle Libre 2 because of alarms waking me up and interrupting all the time. It's not covered by my insurance, but with the GoodRx discount I pay $75 for a month. It doesn't hurt at all to put it on. I can now check my blood sugar as often as I want and it keeps a graph recording for the past 8 hours if you haven't scanned with your phone recently. Even if you only try for one month, it really helps you determine how each food affects your blood sugar. You do have to download an app on your phone. You need an iPhone 7 or new model. Not sure about other brands. Maybe your doctor has a free sample to give you? Good luck!

Jump to this post

Thanks for the information. I don't mind getting blood from my finger. My neuropathy is in my feet. I check my blood every morning and sometimes 2 hours after I eat certain foods to see the effect. Good luck to you too.

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@cgs

Thank you for your information and I'm sorry to hear you have so much trouble with the pain on testing with your hands. My hands are starting to get neuropathy but they don't hurt that bad yet.When I went to my endocrinologist she wanted to put me on a continuous glucose monitor. Medicare won't pay for it they also turn down the four strips a day they will only give me one strip a day. I'm going to use a 3-month supply to get the information for my endocrinologist and write it down on paper so she can get a better picture of my blood sugar. I sometimes tend to be low in the morning and in the afternoon it will be low but then at night time is can Skyrocket if I dont test before eating a snack I feel like I need ..probably because sometimes I eat the wrong things during the day. I'm trying really hard, I eat blueberries, I eat avocados, I try to eat spinach sometimes and salads. I eat Ezekiel 4:9 bread it has no flour and it's no preservative I really like it I toast it and put peanut butter on it. My A1C is not really the best gauge at what my glucose level is, up and down spikes, thanks for the advice about GoodRx I'll look into that. One thing that I do when I run out of my test strips from Medicare for my meter that they supplied ..I bought a $10 meter at CVS and I can get 25 strips for a little over $6 and I've gotten them free before by using some of the coupons from CVS God bless you I pray that I get to go to Loma Linda Medical University neuropathy Clinic as the neuropathy in my feet and legs is getting worse because they have had to raise my Gabapentin. I don't want to reach the limit.Loma Linda claims that they've had success rejuvenating dead nerves thanks again God bless you

Jump to this post

Best of luck at Loma Linda. I hope that works well for you. Let us know if it works.

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Hi, Jim ~ first of all, I'm so sorry you have had so much pain. Your story could be mine, up until your 2022 notes. I started having foot issues like you described also, in about 2008, but at about age 61. It accelerated in 2019 and since May of this year has become unbearable in my feet and almost so in my hands, without two to three pain medications taken 3 or more times daily plus weekly physical therapy. You didn't mention getting a maddeningly itching sensation deep in your feet but that has been my experience off and on for many years, especially in the heel area. I would describe the pain in my feet as having walked about a quarter mile in stilettos on super-heated concrete, then taking my shoes off and stepping into ice water. Like you, my foot pain would start in the evenings, actually around 10 p.m. and for awhile it would subside around 3 or 4:00 a.m. This year, before medication and P.T., I was literally screaming, walking around the house in the middle of the night. Fortunately it was winter and the windows were all closed - also I live alone in my own home. I guess what has baffled me is that I have tried to describe this to several doctors and none of them gave me a definitive diagnosis until an EMG was ordered in December of 2021 in advance of back surgery in January of 2022. Exactly a year ago I fell and fractured my femur at the ball joint with the hip and after that, the neuropathy kind of exploded. My foot pain is now under better control than what it is in my hands, but the thing I struggle with all the time is imbalance in walking. We all seem to have very unique journeys with this. I am so thankful for this website where we can learn from each others' experiences. God's blessings, Jim!

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@bjk3

Hi, Jim ~ first of all, I'm so sorry you have had so much pain. Your story could be mine, up until your 2022 notes. I started having foot issues like you described also, in about 2008, but at about age 61. It accelerated in 2019 and since May of this year has become unbearable in my feet and almost so in my hands, without two to three pain medications taken 3 or more times daily plus weekly physical therapy. You didn't mention getting a maddeningly itching sensation deep in your feet but that has been my experience off and on for many years, especially in the heel area. I would describe the pain in my feet as having walked about a quarter mile in stilettos on super-heated concrete, then taking my shoes off and stepping into ice water. Like you, my foot pain would start in the evenings, actually around 10 p.m. and for awhile it would subside around 3 or 4:00 a.m. This year, before medication and P.T., I was literally screaming, walking around the house in the middle of the night. Fortunately it was winter and the windows were all closed - also I live alone in my own home. I guess what has baffled me is that I have tried to describe this to several doctors and none of them gave me a definitive diagnosis until an EMG was ordered in December of 2021 in advance of back surgery in January of 2022. Exactly a year ago I fell and fractured my femur at the ball joint with the hip and after that, the neuropathy kind of exploded. My foot pain is now under better control than what it is in my hands, but the thing I struggle with all the time is imbalance in walking. We all seem to have very unique journeys with this. I am so thankful for this website where we can learn from each others' experiences. God's blessings, Jim!

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Wow bjk3, that sounds just awful. My heart goes out to you. Most of the pain my feet and legs is fleeting and may keep me from going to sleep, but won't wake me up. The one exception is sometimes I get the most horrific pain in my 4th toe while sleeping. It just feels like it's in a vice. It wakes me and won't stop until I put pressure on it. The pressure initially makes it twice as painful, but then the pain starts to subside and will be gone in a couple minutes. It's not a cramp. I'm not exactly sure what is happening. I wouldn't want my whole foot to feel like that. Glad yours has improved some.

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New information.
I have burning and swelling in my feet. I've been to many doctors for the test. they especially swell when I'm driving or sitting on our bar stool at home. I went to a chiropractor. He too x-rays. Mt L-4 to L-5 has slipped forward and fused. The nerve is pinched and when I sit it pulls there nerve more. People might have an x-ray of their back if they have had all of the test run.
Conrad Taylor

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@cgs

I too have type 2 diabetes with an A1C of mid sixes by doctor seems pleased with that but he doesn't realize that I have high levels at night and occasionally in the morning but because because of whatever reason my A1C stays at Mid 6s my endocrinologist wants me to test four times a day after meals and in the morning but Medicare won't give me the strip so I'm going to buy the inexpensive strips at CVS I have been using them to check at night to try to keep from going over I'll be starving to death and then when I check I'm I will be on 180 to 200 on my glucose meter and I'll go grab a bottle of water I try to eat blueberries mixed berries I eat a lot of avocados all these things help because I do have a little a little high cholesterol and in my HDL my LDL have been improving I do make spinach and banana smoothies and try to offset the sugar Cravings that overcome me especially in the morning when I have my coffee I need to stop that I promise the Lord I would and the caffeine I've read is not good for the nerves and your body that aggravates the neuropathy pain also also salt and sugar one person at the American diabetic Association told me that caffeine was not good for a diabetic that had neuropathy another person told me when I called back later on to get further clarification that they didn't have any information on it my doctors told me it's okay to have a cup of coffee so I get different answers from different people even my endocrinologist God bless you and I pray that you have great success I'm praying to go to Loma Linda's neuropathy Clinic and they claim that they have success and rejuvenating nerves and it's not really that expensive although Medicare won't cover it yet because it's a new Cutting Edge technology

Jump to this post

I have been thinking of trying Bionerve Plus. Has anyone had good results?

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@piatkowskisc

I have been thinking of trying Bionerve Plus. Has anyone had good results?

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I would like to know that myself !! the only thing that my doctor has recommended is vitamin B12 which my last blood test it was actually higher than the limit that was recommended

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