@sjhedcon I use Kratom, and swear by it. I do not use it daily, as it can be addictive, so I use it only 2 or 3 times a week. My pain can be very severe, and Kratom takes it away. I'll say that is a good reason to use it. However, I respect it, and do not abuse it. I take the least possible amount for the desired result. It is one of the very few things that takes away nerve pain. I have STUDIED police reports about it, and unfortunately, it is foolish young adults that abuse it, and get sick, or die from it. It is a God send. It makes life bearable.....Lori R
Don't think so. My name is spelled Claar, but generations ago was spelled Klahr, and original immigrant ancestor frpom Germany was Klar. So who knows. Do you live in Delaware? I am in Newark.
Hello @user_ch1df4426, when you have peripheral neuropathy it's really important to take care of your feet because you can't feel them. You probably already know this but just in case there is more information on the following Mayo Clinic page: http://www.mayoclinic.org/diseases-conditions/diabetes/expert-blog/peripheral-neuropathy/bgp-20056528
I wear socks during the day and at night which helps if I step on something that injures the foot...then I can tell it by the socks. Also, I try to wear shoes that have plenty of toe room which seems to help. Hoping others can jump in if they have some stories to share.
While I don't have chemo induced neuropathy and I do have small fiber peripheral neuropathy with no pain, only the numbness. I take some over the counter natural supplements and vitamins that have helped me. I found it in a neuropathy support group on Facebook. Others in the group that also had chemo induced neuropathy have shared that it has enabled them to get off pain medication once they had been on the supplements for a few months. When trying alternative treatments you should always have a discussion with your doctor first. You can read my story from an earlier post here: https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=13af2ed380
John
Which supplements and vitamins do you take and the amounts. I also have numbness, mine has traveled beyond my knees to my thighs. I am afraid it will travel right to my heart.
Which supplements and vitamins do you take and the amounts. I also have numbness, mine has traveled beyond my knees to my thighs. I am afraid it will travel right to my heart.
@straightway22, I'm not sure if you read my story posted earlier on Connect on what helps me but it contained a link to the closed Facebook group I found and the supplements I take put together by the group. They are now a 501c3 and started their own packaging of supplements to reduce the number of pills needed. Here is a link to my story and how I found the group and the supplements including a link to their Facebook group and the supplements - https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
In addition to these supplements I also take 1 tbsp Qunol liquid turmeric (1000 mg) and 2 tsp of Qunol liquid CoQ10 (100 mg) which are not for the neuropathy but help with inflammation for my PMR and CoQ10 for blood pressure and heart.
Just a reminder -- before starting any supplement you should discuss them with your doctor.
Have you done any research into different supplements for neuropathy?
Yes, I have neuropathy. I have Excruciating pain in the feet and ankles and often in my legs. The burning is unbearable at times/ I have not found any kind of relief. I have tried gabapentin which didn't help one bit. I had back surgery 7 years ago and I have had this burning since then. I have been to many doctors, out of state and in-state, with no success. Any suggestions will be greatly appreciated.
Don't think so. My name is spelled Claar, but generations ago was spelled Klahr, and original immigrant ancestor frpom Germany was Klar. So who knows. Do you live in Delaware? I am in Newark.
To terrydclaar, Yes, I'm in Bethany Beach Delaware. I asked because I'm in touch with an officer Claar here, I'm not sure how he/she spells it, but it's such an unusual name. Peggy
Yes, I have neuropathy. I have Excruciating pain in the feet and ankles and often in my legs. The burning is unbearable at times/ I have not found any kind of relief. I have tried gabapentin which didn't help one bit. I had back surgery 7 years ago and I have had this burning since then. I have been to many doctors, out of state and in-state, with no success. Any suggestions will be greatly appreciated.
Hi @schony1087 sorry to hear that you are suffering with PN. My wife has constant burning in both feet and intermittent sever itch deep in her feet as well, both since chemo in 2014. It seems like for most people there is no miracle cure generally for PN. My wife copes by having a fan both day and night blowing on her feet. Some nights she soaks her feet in very hot water just before turning in which helps her tolerate the pain enough to get to sleep on particularly bad nights. She does have days occasionally when her pain level is lower and she can consequently do a few things without having to constantly be dealing with pain. I'd say she has about equal number of bad pain days and okay days, with an occasional good day (low pain level) thrown in. She had a similar experience, unacceptable side effects, with gabapentin and got off it after about a month on it with zero benefit from taking it. She has tried kratom for pain with no success so far, although others in this forum (like @lorirenee1 ) have used it with better luck. My wife gets relief from marijuana which she only uses when she needs a break badly. She keeps it as her ace-in-the-hole but uses it judiciously as she finds its effects diminish if she uses it too much. She does not use any other drugs and from what I gather from other people opioids are usually not much help either for neuropathy. What have you found out about dealing with your pain? Have you found anything that helps you to cope? My wife is fortunate in that she does not have to work and can just focus on dealing with the pain when she needs to. Not a fun pursuit but at least she can take that time as needed, when it is needed. I feel so badly, I search the internet a lot for some answers but find no definitive solutions, but remain hopeful that we might stumble on something eventually. Giving up is not an option.
Yes, I have neuropathy. I have Excruciating pain in the feet and ankles and often in my legs. The burning is unbearable at times/ I have not found any kind of relief. I have tried gabapentin which didn't help one bit. I had back surgery 7 years ago and I have had this burning since then. I have been to many doctors, out of state and in-state, with no success. Any suggestions will be greatly appreciated.
Yes, I have neuropathy. I have Excruciating pain in the feet and ankles and often in my legs. The burning is unbearable at times/ I have not found any kind of relief. I have tried gabapentin which didn't help one bit. I had back surgery 7 years ago and I have had this burning since then. I have been to many doctors, out of state and in-state, with no success. Any suggestions will be greatly appreciated.
@schony1087 I have severe foot neuropathy as well. I don't find anything works all too well for the burning. I put my feet in ice cold water in the bath tub, and that relieves it, but as soon as I take my feet out, it starts again. I use Wisemen, Healing Balm, which is pure frankincense and myrr, which does help the burning, most of the time. I buy it on Amazon for about fifteen bucks or so, maybe a bit more. It does cool off the burning. For pain, such as throbbing, stabbing, I do use Kratom successfully, and marijuana. If you want to know more about Kratom, let me know. This is terrible to live with. Such a curse. Lori Renee 1
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@sjhedcon I use Kratom, and swear by it. I do not use it daily, as it can be addictive, so I use it only 2 or 3 times a week. My pain can be very severe, and Kratom takes it away. I'll say that is a good reason to use it. However, I respect it, and do not abuse it. I take the least possible amount for the desired result. It is one of the very few things that takes away nerve pain. I have STUDIED police reports about it, and unfortunately, it is foolish young adults that abuse it, and get sick, or die from it. It is a God send. It makes life bearable.....Lori R
Don't think so. My name is spelled Claar, but generations ago was spelled Klahr, and original immigrant ancestor frpom Germany was Klar. So who knows. Do you live in Delaware? I am in Newark.
Which supplements and vitamins do you take and the amounts. I also have numbness, mine has traveled beyond my knees to my thighs. I am afraid it will travel right to my heart.
@straightway22, I'm not sure if you read my story posted earlier on Connect on what helps me but it contained a link to the closed Facebook group I found and the supplements I take put together by the group. They are now a 501c3 and started their own packaging of supplements to reduce the number of pills needed. Here is a link to my story and how I found the group and the supplements including a link to their Facebook group and the supplements - https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
If you just want the links....
Website where I order the new supplements with less pills - https://solutions2pnpd.com/
Old instructions plus the original vs new supplements (PDF) - https://solutions2pnpd.com/wp-content/uploads/2020/02/PRINT-OUT-THESE-INSTRUCTIONS.pdf
In addition to these supplements I also take 1 tbsp Qunol liquid turmeric (1000 mg) and 2 tsp of Qunol liquid CoQ10 (100 mg) which are not for the neuropathy but help with inflammation for my PMR and CoQ10 for blood pressure and heart.
Just a reminder -- before starting any supplement you should discuss them with your doctor.
Have you done any research into different supplements for neuropathy?
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2 ReactionsYes, I have neuropathy. I have Excruciating pain in the feet and ankles and often in my legs. The burning is unbearable at times/ I have not found any kind of relief. I have tried gabapentin which didn't help one bit. I had back surgery 7 years ago and I have had this burning since then. I have been to many doctors, out of state and in-state, with no success. Any suggestions will be greatly appreciated.
To terrydclaar, Yes, I'm in Bethany Beach Delaware. I asked because I'm in touch with an officer Claar here, I'm not sure how he/she spells it, but it's such an unusual name. Peggy
Hi @schony1087 sorry to hear that you are suffering with PN. My wife has constant burning in both feet and intermittent sever itch deep in her feet as well, both since chemo in 2014. It seems like for most people there is no miracle cure generally for PN. My wife copes by having a fan both day and night blowing on her feet. Some nights she soaks her feet in very hot water just before turning in which helps her tolerate the pain enough to get to sleep on particularly bad nights. She does have days occasionally when her pain level is lower and she can consequently do a few things without having to constantly be dealing with pain. I'd say she has about equal number of bad pain days and okay days, with an occasional good day (low pain level) thrown in. She had a similar experience, unacceptable side effects, with gabapentin and got off it after about a month on it with zero benefit from taking it. She has tried kratom for pain with no success so far, although others in this forum (like @lorirenee1 ) have used it with better luck. My wife gets relief from marijuana which she only uses when she needs a break badly. She keeps it as her ace-in-the-hole but uses it judiciously as she finds its effects diminish if she uses it too much. She does not use any other drugs and from what I gather from other people opioids are usually not much help either for neuropathy. What have you found out about dealing with your pain? Have you found anything that helps you to cope? My wife is fortunate in that she does not have to work and can just focus on dealing with the pain when she needs to. Not a fun pursuit but at least she can take that time as needed, when it is needed. I feel so badly, I search the internet a lot for some answers but find no definitive solutions, but remain hopeful that we might stumble on something eventually. Giving up is not an option.
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1 ReactionSame as you’ stimulator only thing that works
@schony1087 I have severe foot neuropathy as well. I don't find anything works all too well for the burning. I put my feet in ice cold water in the bath tub, and that relieves it, but as soon as I take my feet out, it starts again. I use Wisemen, Healing Balm, which is pure frankincense and myrr, which does help the burning, most of the time. I buy it on Amazon for about fifteen bucks or so, maybe a bit more. It does cool off the burning. For pain, such as throbbing, stabbing, I do use Kratom successfully, and marijuana. If you want to know more about Kratom, let me know. This is terrible to live with. Such a curse. Lori Renee 1
Hi @lorirenee1 I sympathize for your foot pain. I am wondering if a diffuser can help using the frankincense and myrr oils, have you tried that?