Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

@faithwalker007

I have epilepsy and I’ve had seizure activity since I was 14 although my neurologist then never told my parents. I discovered it when I started professional pharmacy school (the first year when I was a junior at university at Laramie). I had my first grand mal seizure in our kitchen and my 4 year old son found me after hearing my head hit the counter and my land on the floor and begin seizing. He then ran to my husband and he called 911.
I barely passed pharmacy school after that because of all the experimentation and reactions to seizure medications over the course of the next two years. But I did it!

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@faithwalker007
I'd like to invite you to join the Seizure/Epilepsy discussions. Your knowledge would be helpful to many. I hope you consider joining us.
https://connect.mayoclinic.org/group/epilepsy-2bb359/
Take care,
Jake

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@jakedduck1

@faithwalker007
I'd like to invite you to join the Seizure/Epilepsy discussions. Your knowledge would be helpful to many. I hope you consider joining us.
https://connect.mayoclinic.org/group/epilepsy-2bb359/
Take care,
Jake

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I will join. I'm not sure what I can offer, but I'll do what I can.

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@faithwalker007

Yes. I tried one in the past that didn’t help me and actually gave me headaches and then with my doctor’s permission, tried again.
I consulted my pharmacist and am now using one that is Pharmacist grade and made, every batch third party tested for strength and quality.
It’s made by zova and information can be found at zovacbd.com

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@greeneyes55, & @faithwalker007
I'm currently on medical cannabis myself & unlike most people I get slight euphoric effects from taking CBD oil content. But I do not get euphoric effects from higher THC ratios. So as you see this type of medication does not effect everyone the same. I do not take any opiate's & I have multiple levels of herniated discs & spinal stenosis & a cracked sacrum, and I'm really in bad physical shape currently awaiting to move from my 5th floor walk-up Apt so I can get my knee replacement surgery. Due to Covid no Surgeon will allow me to re-coup in a nursing home.
My point being it's not what type of CBD company you get it from it is made of hemp. But if it helps you that's your choice. However most of us serious chronic pain issue's & other health issue's people who do not get enough RELEIF from balms & creams or store or Phmcy Hemp products, we rely on Medical cannabis oil and I have learned how to mix it with pure cocoa butter & Frankincense oil with my High CBD Cannabis oil that has about more pure cannaboids that help relieve pain & certain properties that helps me relax my anxiety issue's. The amount of THC in these types of oils or tinctures when applied topically can not give you any euphoric effects or go into your bloodstream. So please understand that the way you ingest these products make a difference in the effects you receive & also we are all different what works for you may not work for me & vice a versa. I take capsule form for my chronic pain issue's & lately I find that I'm able to tolerate up to 5mg THC/ & 5mg of CBD in a ratio of 1:1 like at evening time & it gets rid of my pain even better. But I had to do it very slowly over 5yrs to build my tolerance. Also not many people will tell you to have a piece of 🧀 cheese or an 🥑 avocado to help your body absorb the Cannaboids best absorbed into your body. Always eat something b4 intake.

I wish you well. Feel better life is ever changing what happens now may be a memory in a few years some better some worse. But we survive. Stay well.

Liked by Hank

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@msstoppainnagginme

@greeneyes55, & @faithwalker007
I'm currently on medical cannabis myself & unlike most people I get slight euphoric effects from taking CBD oil content. But I do not get euphoric effects from higher THC ratios. So as you see this type of medication does not effect everyone the same. I do not take any opiate's & I have multiple levels of herniated discs & spinal stenosis & a cracked sacrum, and I'm really in bad physical shape currently awaiting to move from my 5th floor walk-up Apt so I can get my knee replacement surgery. Due to Covid no Surgeon will allow me to re-coup in a nursing home.
My point being it's not what type of CBD company you get it from it is made of hemp. But if it helps you that's your choice. However most of us serious chronic pain issue's & other health issue's people who do not get enough RELEIF from balms & creams or store or Phmcy Hemp products, we rely on Medical cannabis oil and I have learned how to mix it with pure cocoa butter & Frankincense oil with my High CBD Cannabis oil that has about more pure cannaboids that help relieve pain & certain properties that helps me relax my anxiety issue's. The amount of THC in these types of oils or tinctures when applied topically can not give you any euphoric effects or go into your bloodstream. So please understand that the way you ingest these products make a difference in the effects you receive & also we are all different what works for you may not work for me & vice a versa. I take capsule form for my chronic pain issue's & lately I find that I'm able to tolerate up to 5mg THC/ & 5mg of CBD in a ratio of 1:1 like at evening time & it gets rid of my pain even better. But I had to do it very slowly over 5yrs to build my tolerance. Also not many people will tell you to have a piece of 🧀 cheese or an 🥑 avocado to help your body absorb the Cannaboids best absorbed into your body. Always eat something b4 intake.

I wish you well. Feel better life is ever changing what happens now may be a memory in a few years some better some worse. But we survive. Stay well.

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@msstoppainnagginme, Good evening. Thank you for the post explaining the difference between cannabis and hemp. I, too have never used opioids for managing my pain…..just a medical cannabis tincture….2:1 if I am just lying around under COVID house arrest. I am too old to go out. I also worked up to a !:! after time. I use that dosage when I have to be alert for my work on Connect.

I am interested in your special concoction with cocoa butter and Frankincense. I use another essential oil, Adaptive for my neuropathic itch. So…it has been five years for me also. I learned so much from the dispensary folks and a couple of nurse friends. It does take time. And your body does become more tolerable of the higher dosages over time. I have always tried to have something on the tummy when I medicate.

My best to you. Please stay in touch if you have more to share from your discoveries.
May you be free of suffering and the causes of suffering.
Chris

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@msstoppainnagginme

@greeneyes55, & @faithwalker007
I'm currently on medical cannabis myself & unlike most people I get slight euphoric effects from taking CBD oil content. But I do not get euphoric effects from higher THC ratios. So as you see this type of medication does not effect everyone the same. I do not take any opiate's & I have multiple levels of herniated discs & spinal stenosis & a cracked sacrum, and I'm really in bad physical shape currently awaiting to move from my 5th floor walk-up Apt so I can get my knee replacement surgery. Due to Covid no Surgeon will allow me to re-coup in a nursing home.
My point being it's not what type of CBD company you get it from it is made of hemp. But if it helps you that's your choice. However most of us serious chronic pain issue's & other health issue's people who do not get enough RELEIF from balms & creams or store or Phmcy Hemp products, we rely on Medical cannabis oil and I have learned how to mix it with pure cocoa butter & Frankincense oil with my High CBD Cannabis oil that has about more pure cannaboids that help relieve pain & certain properties that helps me relax my anxiety issue's. The amount of THC in these types of oils or tinctures when applied topically can not give you any euphoric effects or go into your bloodstream. So please understand that the way you ingest these products make a difference in the effects you receive & also we are all different what works for you may not work for me & vice a versa. I take capsule form for my chronic pain issue's & lately I find that I'm able to tolerate up to 5mg THC/ & 5mg of CBD in a ratio of 1:1 like at evening time & it gets rid of my pain even better. But I had to do it very slowly over 5yrs to build my tolerance. Also not many people will tell you to have a piece of 🧀 cheese or an 🥑 avocado to help your body absorb the Cannaboids best absorbed into your body. Always eat something b4 intake.

I wish you well. Feel better life is ever changing what happens now may be a memory in a few years some better some worse. But we survive. Stay well.

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The thing that I have heard in these few posts about cannabis oil usage is your statement that "we are all different what works for you may not work for me & vice a versa". I think that is the one recurrent theme that everyone comes back to over and over again in this forum. It seems that for most people trial and error is how they arrive at what helps them, if anything does help them. Perhaps a product with THC turns out to be just the ticket for one, and a product with zero THC turns out to be it for another. I have not noticed that there is much of any rhyme or reason why something works for one and not another.

I suggest always taking any blanket statements made by anyone with a large grain of salt. That works for me anyway, but maybe it won't work for you. And maybe you'd rather try pepper. It's up to you. See what works. 😉 Best, Hank

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@artscaping

@msstoppainnagginme, Good evening. Thank you for the post explaining the difference between cannabis and hemp. I, too have never used opioids for managing my pain…..just a medical cannabis tincture….2:1 if I am just lying around under COVID house arrest. I am too old to go out. I also worked up to a !:! after time. I use that dosage when I have to be alert for my work on Connect.

I am interested in your special concoction with cocoa butter and Frankincense. I use another essential oil, Adaptive for my neuropathic itch. So…it has been five years for me also. I learned so much from the dispensary folks and a couple of nurse friends. It does take time. And your body does become more tolerable of the higher dosages over time. I have always tried to have something on the tummy when I medicate.

My best to you. Please stay in touch if you have more to share from your discoveries.
May you be free of suffering and the causes of suffering.
Chris

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Hello, I too, use Frankinsence. I take it sublingually. I also take DDR Prime which is a cellular complex and a product called Deep Blue, which is a polyphenol complex. Been on both for 4 months and have seen a difference in my neuropathy. As all have been stating, different meds work differently for all. I'm trying everything I can. The neuropathy hits me at night only right now and had lessened with the discomfort. Hoping it stays that way.

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In reply to @faithwalker007 "Uh... why?" + (show)
@faithwalker007

Uh… why?

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@faithwalker007 everything you deal with and manage to maintain mental acuity

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@bustrbrwn22

@faithwalker007 everything you deal with and manage to maintain mental acuity

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That mental acuity is only when the pain is pushed to the back, distracted, I can’t do that all the time and I wish I could. I would kill someone if I practiced my beloved profession in a pharmacy today. I would kill someone if I consulted. That’s why I don’t. I simply rely on the knowledge I have and know to place me and my family and friends in a position of power and security when making decisions about healthcare – liberty and livelihood.
I’m an author and writer which makes putting my thoughts onto paper much easier than if you were standing in front of me. Lol believe me, if that was the case, it would be a whole different story.
CRPS has stolen my ability to learn, to concentrate, to stand, to sit, and even to stay awake for very long or sleep for longer. But I love my life. Why?
Because of people like you.

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@jesfactsmon

The thing that I have heard in these few posts about cannabis oil usage is your statement that "we are all different what works for you may not work for me & vice a versa". I think that is the one recurrent theme that everyone comes back to over and over again in this forum. It seems that for most people trial and error is how they arrive at what helps them, if anything does help them. Perhaps a product with THC turns out to be just the ticket for one, and a product with zero THC turns out to be it for another. I have not noticed that there is much of any rhyme or reason why something works for one and not another.

I suggest always taking any blanket statements made by anyone with a large grain of salt. That works for me anyway, but maybe it won't work for you. And maybe you'd rather try pepper. It's up to you. See what works. 😉 Best, Hank

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@jesfactsmon Hello Hank,
It's not that I haven't tried other forms of medication and I have been on super strong opiate's myself. But I took my meds as directed & something changed over time, my medications were making me hurt even more, this happened before the cut-offs & I decided to find a different pain mgmt Dr. & I got off all the opiate's my body was having severe reactions of nausea, brain fog, excessive sweating, my body, mind & soul was being drained, and slowly getting really bad. It started to be unbearable to get out of bed daily.
I suffer like everyone who posts here. We are here to show support to 1another & our own experiences with certain medications, whether they help some ppl is not a magic fix, it's a science. We are all different in the sense of how our bodies react to certain medications & pepper helps with pain too. It's not a 1size fits all.

Liked by Hank

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@faithwalker007

That mental acuity is only when the pain is pushed to the back, distracted, I can’t do that all the time and I wish I could. I would kill someone if I practiced my beloved profession in a pharmacy today. I would kill someone if I consulted. That’s why I don’t. I simply rely on the knowledge I have and know to place me and my family and friends in a position of power and security when making decisions about healthcare – liberty and livelihood.
I’m an author and writer which makes putting my thoughts onto paper much easier than if you were standing in front of me. Lol believe me, if that was the case, it would be a whole different story.
CRPS has stolen my ability to learn, to concentrate, to stand, to sit, and even to stay awake for very long or sleep for longer. But I love my life. Why?
Because of people like you.

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@faithwalker007 I overdid some menial tasks this am so now am ramping up to a 9 in pain. Stupid my own fault. So sifting through emails and was looking at job postings and denigrating myself for jobs I’ll never be able to have again but that I used to be able to. It’s like mourning a death that never stops. Going down a downward spiral and I happened upon your response. I am shedding tears and some pain along with it. Thank you for reading and responding. Your family and friends are lucky indeed.

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@artscaping

@msstoppainnagginme, Good evening. Thank you for the post explaining the difference between cannabis and hemp. I, too have never used opioids for managing my pain…..just a medical cannabis tincture….2:1 if I am just lying around under COVID house arrest. I am too old to go out. I also worked up to a !:! after time. I use that dosage when I have to be alert for my work on Connect.

I am interested in your special concoction with cocoa butter and Frankincense. I use another essential oil, Adaptive for my neuropathic itch. So…it has been five years for me also. I learned so much from the dispensary folks and a couple of nurse friends. It does take time. And your body does become more tolerable of the higher dosages over time. I have always tried to have something on the tummy when I medicate.

My best to you. Please stay in touch if you have more to share from your discoveries.
May you be free of suffering and the causes of suffering.
Chris

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@artscaping Hello Chris. I'm recouping from 3 injection's 2days ago. Rcvd a shot in my sacrum, & Lwr lumbar left side epidurals to ease my sciatica it runs thru my back of butt cheek's & they help me ease my tailbone cracked from my knee buckling & falling down.
It's been a rough year for most of us. But we must try to live somehow. I use Palmer's whipped cocoa butter & about 3mg of 1:20 THC/CBD Cannabis oil & Frankincense oil for topical use about 3-5 drops I mix it all in with a tiny little baby spoon & I keep it in a glass jar in my refrigerator. A little dab helps releive my chronic knee pain & my neuropathy in my hands before bedtime. I have a Friend who told me to try tea tree oil for topical use of skin issue's. It helped. I sometimes use Spearmint or Lavander essential oil in my CBD & cocoa butter mixture they are great for relaxation & help soothe the mind so we can sleep a few hours more. I know 2well what it feels like to be awake & stressed out from 1type of pain or another. I hope you have a beautiful day & I hope someone else gets rid of their pains from my knowledge & experience.
Hemp oil did absolutely nothing for me except for losing $$.
If we all were able to take the same products it would be easy, but at the same time impossible. I take a different dosage of Blood pressure medication than my Husband but we both end up achieving the same outcome to lower our blood pressure. So we are all different & in many ways so is how medication is going to get the result we want. All I know is it's been a Great experience to learn from everyone about different things that work for our mind, soul & body. I'm thankful for being alive.
Happy Holidays.
Mimi

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@bustrbrwn22

@faithwalker007 I overdid some menial tasks this am so now am ramping up to a 9 in pain. Stupid my own fault. So sifting through emails and was looking at job postings and denigrating myself for jobs I’ll never be able to have again but that I used to be able to. It’s like mourning a death that never stops. Going down a downward spiral and I happened upon your response. I am shedding tears and some pain along with it. Thank you for reading and responding. Your family and friends are lucky indeed.

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@bustrbrwn22
Jen, I hear you. You are suffering like pretty much everyone here is, it's crazy. This neuropathy discussion is like visiting a different planet in some far away star system where people live a completely different existence than what most earthlings can relate to. Most people have NO IDEA of this way of living. Linda just felt a little bit of energy this morning and decided she was going to go out with me to Best Buy and maybe Target. And we did! We went to Best Buy and Linda was almost like her old self. Then we stopped at Target, a mistake in retrospect. By then she had done too much but didn't really realize it or at least did not want to stop being normal. Then we came home. Her legs almost didn't work from the car into the condo. I'd never seen her be so immobile before when we were out, I practically had to carry her. Such is life for the outer space people. This is living in a very different sense, and where very small achievements become astounding accomplishments. I'm still amazed we went out, she and I. It's VERY unusual for us this past almost 2 years.

Jen, just know it's a weird and sometimes awful life you and Linda are now faced with. But don't give up. Do not ever give up. Look at each day as an accomplishment that you got through and give yourself a major gold star. You are incredible and you and Linda and Renee and Lori and Chris and all of you other great people here, are my heroes! Best, Hank

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@faithwalker007

I have epilepsy and I’ve had seizure activity since I was 14 although my neurologist then never told my parents. I discovered it when I started professional pharmacy school (the first year when I was a junior at university at Laramie). I had my first grand mal seizure in our kitchen and my 4 year old son found me after hearing my head hit the counter and my land on the floor and begin seizing. He then ran to my husband and he called 911.
I barely passed pharmacy school after that because of all the experimentation and reactions to seizure medications over the course of the next two years. But I did it!

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Faithwalker007, I've been researching thiamine for my wife's health condition and when I read about your epilepsy it brought to mind thiamine and vitamin D needing sufficient magnesium to make them bioactive. The nootopics link includes information on forms of thiamine able to cross the blood/brain barrier.
https://somepomed.org/articulos/contents/mobipreview.htm?0/63/1022
https://nootropicsexpert.com/vitamin-b1-thiamine/
https://www.epilepsy.com/article/2017/10/vitamin-d-and-seizure-control
https://www.krispin.com/magnes.html

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@jesfactsmon

@bustrbrwn22
Jen, I hear you. You are suffering like pretty much everyone here is, it's crazy. This neuropathy discussion is like visiting a different planet in some far away star system where people live a completely different existence than what most earthlings can relate to. Most people have NO IDEA of this way of living. Linda just felt a little bit of energy this morning and decided she was going to go out with me to Best Buy and maybe Target. And we did! We went to Best Buy and Linda was almost like her old self. Then we stopped at Target, a mistake in retrospect. By then she had done too much but didn't really realize it or at least did not want to stop being normal. Then we came home. Her legs almost didn't work from the car into the condo. I'd never seen her be so immobile before when we were out, I practically had to carry her. Such is life for the outer space people. This is living in a very different sense, and where very small achievements become astounding accomplishments. I'm still amazed we went out, she and I. It's VERY unusual for us this past almost 2 years.

Jen, just know it's a weird and sometimes awful life you and Linda are now faced with. But don't give up. Do not ever give up. Look at each day as an accomplishment that you got through and give yourself a major gold star. You are incredible and you and Linda and Renee and Lori and Chris and all of you other great people here, are my heroes! Best, Hank

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@bustrbrwn22 @jesfactsmon You guys are just the best. Jen, please, please, don't look down at yourself. Life is about change, and please, just do what you can each day, and praise yourself. Hank, I am so glad that Linda and you got out a bit, but man, do I know the consequences. I have learned to not do anything out for more than an hour or so, or I will pay for it later. I still think it is wonderful that you managed to get out. This really is like being on another planet. No one can imagine how difficult it is, unless they experience first hand. My love to both of you, Lori

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@johnbishop

Hello @fumi, Welcome to Mayo Clinic Connect. I have idiopathic small fiber peripheral neuropathy and walking is a little difficult for me. I have an exercise bike that I use several times a day and I also try to do a little walking (emphasis on little for me due to back pain). I'm not sure exercise will slow down the progression but I think it helps you keep up your strength and flexibility so that you are able to keep moving. Balance is also another issue I have so I make sure I get up slowly and wait a few seconds before starting to walk. There are a couple of other discussions you might find helpful.

– Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
– Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/

Do you enjoy walking?

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Yes, I enjoy staggering but the potential for a fall haunts me. Thank for your links, especially the first one. Most of the balance links focus on other maladies that–fortunately–i don't have . . . or don't have yet.

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