Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Hello @catro How troubling this disease is and unpredictable with each persons experience being so unique. I'm sorry you have progressive neuropathy. I do as well and yes, I experience all of your pain areas but, not in such a distinct pain pattern as yours. I have polyneuropathy and my findings have been that areas rotate in pain intensity. Flares may be for days in certain body parts then trade off. I have no moments of escaping pain anymore. Earlier on, my nights were filled with pain and I'd be up through the night. I suffer from insomnia as a result. Now, for the most part I sleep through the night (once I get to sleep anyway) with the help of medical marijuana. Have you tried it for your pain? Does heat or ice help you duting your night flares? Do you use any topicals? I'm glad you have moments of being pain free! That's awesome!!! Take care.
Rachel

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Yes, catro and Rachel, Neuropathy is progressing capriciously in my body too. It moved up from my toes, into feet, legs, arms and hands. I wonder what's next … Recently it flared up in my toes again – like a red hot sabre ramming through one toe into my body. My diagnosis was Axonal Sensory Neuropathy. Peggy

Liked by rwinney

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I have to change medicines now and then. I too am trying to be pain-free all day and night. Walking around helps. I always feel better in the late afternoon and evening, when I've been walking around all day. Mornings are the hardest. Anyone else? Peggy

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Good morning Peggy @pfbacon Yes ma'am mornings and evenings are the hardest for me. I've gone all night without pain medication therefore when I wake up all hell breaks loose. It didnt used to be that way but progression dictates.

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@lorirenee1

@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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@lorirenee1 You mentioned that ice cold water helps your feet. It does mine too. So, I take a pair of cotton athletic socks, soak them in cold water and wear them with my Nike sandals around the house. It instantly helps with the pain. At night, sometimes I wear the wet soaks to bed and let my feet hang over the edge. Not the most clamorous look, but it really helps with the pain. For all day pain, I use strong pain pills and they are wonderful. They make my brain foggy but it is better than the pain.

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@fredjan2016

@lorirenee1 You mentioned that ice cold water helps your feet. It does mine too. So, I take a pair of cotton athletic socks, soak them in cold water and wear them with my Nike sandals around the house. It instantly helps with the pain. At night, sometimes I wear the wet soaks to bed and let my feet hang over the edge. Not the most clamorous look, but it really helps with the pain. For all day pain, I use strong pain pills and they are wonderful. They make my brain foggy but it is better than the pain.

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For the person that stated Medical Marijuana helps her I am wondering how it was taken and how much. I have tried taking it with the drops to no avail. I heard I should mix it with cream and apply it topically, Can I get an answer for this. I have such burning in the low back and buttocks area and the feet and ankles. It is like my body is on fire. I had back surgery approximately 7 years ago. L4&5

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@fredjan2016

@lorirenee1 You mentioned that ice cold water helps your feet. It does mine too. So, I take a pair of cotton athletic socks, soak them in cold water and wear them with my Nike sandals around the house. It instantly helps with the pain. At night, sometimes I wear the wet soaks to bed and let my feet hang over the edge. Not the most clamorous look, but it really helps with the pain. For all day pain, I use strong pain pills and they are wonderful. They make my brain foggy but it is better than the pain.

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@fredjan2016 I will definitely wet my socks and wear them!!!! Ice cold water! This is a fabulous idea, and I never would have thought of it. Thanks so much, and let those feet hang over the edge of your bed and just feel ok. That is all that matters. Thanks for the tip!!!! Just wonderful!!! Be safe and well, Lori

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Do you use the cold socks for the very hot sweats?

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If you mean the hot sweats caused by the opioids, the cold socks didn't help with that problem.

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No- when I take my medication for Parkinson's- within 10-15 minutes I start sweating like crazy- which will last over an hour at times. So if your Idea of the cold socks will help- I will try, I will try anything to stay cool, especially in the summer here in Phoenix. The winter its allot better- thank you. John

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@colleenyoung

@pfbacon When considering complementary or alternative treatments, be open-minded yet skeptical and do your research. Learn about the potential benefits and risks. Here is an article from Mayo Clinic that might interest you about evaluating claims made by the producers and/or sellers of supplements, natural products and other alternative medicines. http://mayocl.in/2tGC0Jp

For neuropathy, Mayo Clinic's treatment goals are to manage the condition causing neuropathy and to relieve symptoms. See more here: https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/diagnosis-treatment/drc-20352067

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Colleen, have you heard about a new medication, they may start using for Parkinson's patients-instead of the Carb/Levodpa? Thank you.. John

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@johnjames

Colleen, have you heard about a new medication, they may start using for Parkinson's patients-instead of the Carb/Levodpa? Thank you.. John

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@johnjames is this the new medication you mentioned?

New medication, Istradefylline, gets approved for Parkinson's: https://www.apdaparkinson.org/article/new-medication-istradefylline-gets-approved-for-parkinsons-disease/

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@rwinney

Hello @catro How troubling this disease is and unpredictable with each persons experience being so unique. I'm sorry you have progressive neuropathy. I do as well and yes, I experience all of your pain areas but, not in such a distinct pain pattern as yours. I have polyneuropathy and my findings have been that areas rotate in pain intensity. Flares may be for days in certain body parts then trade off. I have no moments of escaping pain anymore. Earlier on, my nights were filled with pain and I'd be up through the night. I suffer from insomnia as a result. Now, for the most part I sleep through the night (once I get to sleep anyway) with the help of medical marijuana. Have you tried it for your pain? Does heat or ice help you duting your night flares? Do you use any topicals? I'm glad you have moments of being pain free! That's awesome!!! Take care.
Rachel

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Hello @rwinney, Can you please provide more detail about your medical marijuana? Is it a pill? Dosage? Brand?
Thanks

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@jamesinsonoma Hi, sure thing. I am state certified and get it through my local dispensary. The brand is PharmaCannis and I use a 9.5mg dose of Blue oral solution, capsule and chewable tablet. It is a 20:1 ratio of THC:CBD. I have times where I prefer one over the other based on need…side effects, swiftness of effectiveness, time of day, etc… Happy to help if you have any questions.
Rachel

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Would you know if there is a dispensary near Port Charlett, Fla or Englewood , Florida

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