Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@terrydclaar

Thanks Lori. I am thinking about starting to try Kratom for my severe foot PN issues that keep me from sleeping.. How long does it take for Kratom to take effect for you? What time do you take them at night? Thanks, Terry

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@terrydclaar I do not take Kratom at a regular time. I take it when I hurt, whenever that time happens to be. The pills take effect in about 10 minutes or so, and last about 3 hours, maybe 4. Because I take 8 to 9 pills, it makes me sleepy, but what can I do. It beats pain by a long stretch. I take it from 1 to 3 times a day, and never take it two days in a row. Hope this helps! Lori

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Hi members,
Because Kratom is an unregulated substance, I like to post this message occasionally to help you with your research and making an informed decision about its use. Some of you have seen it before, so I post it for newcomers who may not have seen the message.

Kratom is a natural product but it does have significant risks and side effects. Because of these risks the FDA banned import of Kratom in August 2016 and issued a notice of intent to classify 2 chemicals in Kratom as Schedule 1 drugs (the same category as heroin). There are no FDA-approved uses for kratom, and the agency has received concerning reports about the safety of kratom. FDA is actively evaluating all available scientific information on this issue. (2019) https://www.fda.gov/news-events/public-health-focus/fda-and-kratom

Kratom can cause dependence and withdrawal symptoms including aggression, anxiety and other negative psychiatric effects, muscle aches, spasms, tremors, insomnia, fever and upset stomach. It can also cause dangerous slowed breathing and seizures. It can worsen psychiatric disease and may increase the risk of suicide. Kratom can impair liver function. Kratom interacts with other herbal medications including Jimson Weed. It interacts with sedating medications. It has the potential for many other drug interactions because of the way it is metabolized.

For more information see:
– National Institute of Health: Drug Facts, Kratom https://www.drugabuse.gov/publications/drugfacts/kratom
– Center for Disease Control https://www.webmd.com/mental-health/addiction/news/20190411/cdc-americans-are-dying-from-kratom-overdoses#1

Here are additional articles from Mayo Clinic on Kratom:
– Kratom: Unsafe and ineffective https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/kratom/art-20402171
– Kratom for opioid withdrawal: Does it work? https://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/in-depth/kratom-opioid-withdrawal/art-20402170

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Thanks for you information. With all these potential side effects, why would anyone want to use kratom?

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@colleenyoung

Hi members,
Because Kratom is an unregulated substance, I like to post this message occasionally to help you with your research and making an informed decision about its use. Some of you have seen it before, so I post it for newcomers who may not have seen the message.

Kratom is a natural product but it does have significant risks and side effects. Because of these risks the FDA banned import of Kratom in August 2016 and issued a notice of intent to classify 2 chemicals in Kratom as Schedule 1 drugs (the same category as heroin). There are no FDA-approved uses for kratom, and the agency has received concerning reports about the safety of kratom. FDA is actively evaluating all available scientific information on this issue. (2019) https://www.fda.gov/news-events/public-health-focus/fda-and-kratom

Kratom can cause dependence and withdrawal symptoms including aggression, anxiety and other negative psychiatric effects, muscle aches, spasms, tremors, insomnia, fever and upset stomach. It can also cause dangerous slowed breathing and seizures. It can worsen psychiatric disease and may increase the risk of suicide. Kratom can impair liver function. Kratom interacts with other herbal medications including Jimson Weed. It interacts with sedating medications. It has the potential for many other drug interactions because of the way it is metabolized.

For more information see:
– National Institute of Health: Drug Facts, Kratom https://www.drugabuse.gov/publications/drugfacts/kratom
– Center for Disease Control https://www.webmd.com/mental-health/addiction/news/20190411/cdc-americans-are-dying-from-kratom-overdoses#1

Here are additional articles from Mayo Clinic on Kratom:
– Kratom: Unsafe and ineffective https://www.mayoclinic.org/healthy-lifestyle/consumer-health/in-depth/kratom/art-20402171
– Kratom for opioid withdrawal: Does it work? https://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/in-depth/kratom-opioid-withdrawal/art-20402170

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Do you have any experience with CBD oil.? Any info appreciated

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@sjhedcon, In response to your question about any experience with CBD oil, yes I use medical cannabis for pain management. How would you see CBD oil helping you? For pain? for relief from numbness or what I call tingles and needles? The products in legal states are tested and comply with regulations for being able to do what they say they will do.

My strong recommendation would be to not start with the corner CBD trailer or anything that is on the street or online unless it is legal and has both dosage and frequency recommendations. Secondly, you will have to be willing to experiment and select products that work. If you are with a pain management provider or other dispensary pharmaceutical assistance, then they will help you get started.

There is absolutely no need to get high in order to have relief from pain and discomfort. Here is the link to a pretty heady article that has some helpful hints. Please do note the section on hemp.
https://www.practicalpainmanagement.com/patient/treatments/marijuana-cannabis/navigating-cannabis-options-chronic-pain
And here is another publication with valuable data, "Leafy". I subscribe to "Leafy" online and find that it keeps me up to date.
https://www.leafly.com/news/cbd/cbd-vs-thc
May I suggest that after reading the information in the suggested links, you let me know how you want to start. I will share what my regimen is at this point and help you develop a daily protocol. I also feel that for the best pain relief you need only two distribution types, tinctures and topicals. Gummies and other edibles are quite inconsistent in my experience.

May you be free of suffering and the causes of suffering.

Chris

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@sjhedcon

Thanks for you information. With all these potential side effects, why would anyone want to use kratom?

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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

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@pfbacon

terrydklaar, are you related to an Officer Klaar who patrols Delaware State Park at the Indian River in Delaware? Peggy

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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.

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@johnbishop

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

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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.

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@straightway22

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.

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@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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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.

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@terrydclaar

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.

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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

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@schony1087

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.

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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.

Liked by rwinney

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@schony1087

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.

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Same as you’ stimulator only thing that works

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@schony1087

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.

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@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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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?

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