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?

@johnbishop

@mcgatt you might want to read the post by @colleenyoung to learn more about Kratom and possible side effects.
https://connect.mayoclinic.org/discussion/intractable-pain-ip-doctors/?pg=1#comment-316645

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You said you only have minor neuropathy in feet! I probably wouldn’t take anything! I have spinal stenosis and trust me, it’s more than that! Surgery did nothing! Gabapentin made me a zombie! Doctors even agreed they wouldn’t take it! Shots in spine didn’t help! Couldn’t walk 50 feet without sitting down! Severe neuropathy in feet ! Medical marijuana makes me couch bound! Have just started using Kratom! A man on spinal stenosis forum suggested it! It’s a plant! Only problems they have found with it have been combining it with drugs like opiates! It is good for depression, anxiety etc! It also motivates you to get off the couch! Know people that have been on it for years! No problems! Am 68 years old and could care less about getting hooked on it! Also, I don’t get high on it ! It makes you tolerate your pain! Maybe you should try it!

Liked by steeldove

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@fonda

Believe me the two sensations can co-exist. My neurologist explained it to me but I didn't understand even then.

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@fonda Yes, pain and numbness can coexist. Small fibers are sending one signal, and large fibers are sending a different signal. I believe that it has to do with presence or absence of myelin sheath on the fibers.

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@johnbishop @colleenyoung Perhaps this new research will finally lead to a drug-free option for relieving neuropathy pain. We can hope!!!

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@steeldove

@johnbishop @colleenyoung Perhaps this new research will finally lead to a drug-free option for relieving neuropathy pain. We can hope!!!

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@johnbishop @colleenyoung Oppppps! Researchers Explore A Drug-Free Idea To Relieve Chronic Pain: Green Light
Researchers Explore A Drug-Free Idea To Relieve Chronic Pain: Green LightResearchers are looking into a surprisingly simple technique that shows promise in easing certain kinds of chron…

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@steeldove

@johnbishop @colleenyoung Oppppps! Researchers Explore A Drug-Free Idea To Relieve Chronic Pain: Green Light
Researchers Explore A Drug-Free Idea To Relieve Chronic Pain: Green LightResearchers are looking into a surprisingly simple technique that shows promise in easing certain kinds of chron…

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Thanks @steeldove – I think this is the research you mentioned.

Researchers Explore A Drug-Free Idea To Relieve Chronic Pain: Green Light
https://www.npr.org/sections/health-shots/2019/12/15/787138928/researchers-explore-a-drug-free-idea-to-relieve-chronic-pain-green-light

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I have had neuropathy in my feet for 14 years and it has been no fun. I have seen several doctors but none of them has had an answer. I heard an ad on the television and they take Medicare but did not get the phone number, it was to short. Did anyone see the ad, I would love to have the phone number.

Liked by Leonard

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@jacksgarden

I have had neuropathy in my feet for 14 years and it has been no fun. I have seen several doctors but none of them has had an answer. I heard an ad on the television and they take Medicare but did not get the phone number, it was to short. Did anyone see the ad, I would love to have the phone number.

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@jacksgarden please be aware that there are many ads out there claiming that Medicare will pay, but Medicare does not. When Medicare rejects payment, you are stuck with the bill. So if you do find any such place, please call Medicare and check to make sure they will pay for it. Also there are doctors claiming a cure, but if you read the fine print it says for certain known causes.

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@johnhans

@jacksgarden please be aware that there are many ads out there claiming that Medicare will pay, but Medicare does not. When Medicare rejects payment, you are stuck with the bill. So if you do find any such place, please call Medicare and check to make sure they will pay for it. Also there are doctors claiming a cure, but if you read the fine print it says for certain known causes.

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Ah . Sucker born every minute

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What We Don't Know About CBD Products Could Hurt Youcbd products
BY FRIEDA WILEY, PHARMD, RPH
SEPTEMBER 27, 2019
Medical marijuana has always been a popular – and not to mention, controversial – topic. But now, its grandchild, cannabidiol (CBD), is enjoying its own 15 minutes of fame. These days, it's virtually impossible to turn on the TV, surf the ‘net, or even cruise down the street without seeing or hearing something about CBD.

Though CBD comes from the same plant as marijuana, CBD has little, if any, tetrahydrocannabinol (THC), the chemical that gives marijuana its euphoric or hallucinogenic effects. So, as long as the amount of THC falls below a certain amount, CBD products are legal to sell (though that doesn’t guarantee that the products are entirely safe).

CBD is used to treat many health conditions such as seizures and other neurological disorders, pain, and inflammation. CBD comes in a wide variety of products and dosages: You can find CBD sold in tinctures, gummies, capsules, lozenges, oils, vape pens, sprays, creams, and suppositories, and more. But not all CBD products are safe – or are created equal. And the jury’s still out on the quality of these products and how well they work.

To get a better handle on the challenges, I spent some time chatting with my colleague, Michael Schuh, PharmD, MBA, FAPhA, a clinical pharmacist and assistant professor of family medicine, palliative medicine, and pharmacy at the Mayo Clinic in Florida. He also happens to be an expert in integrative medicine and CBD.

What’s the biggest misconception about CBD?

CBD is like a potent herbal supplement, but what many people don’t realize is that CBD has side effects and drug interactions just like any drug. Basically, if it’s a strong enough dose to cause therapeutic effects, it’s enough to cause side effects and drug interactions. Another problem is that few of the products are standardized or vetted to make sure you’re getting a pure and high-quality product. This makes it hard to know what you’re really using. In fact, there’s no real way to vet CBD products right now. Anything that you swallow, inhale, inject, or absorb through your skin that has direct contact with your bloodstream has a risk of unforeseen side effects or interactions.

Many companies say that CBD products are completely safe, but you mentioned that CBD products have drug interactions that are not widely known. Can you give us an example?

The liver plays an important role in how drugs work because it contains special catalysts, or enzymes that activate drugs so they can take an effect on the body. These enzymes may also help remove these drugs from the body after they’ve done their job. CBD slows down the liver enzymes' ability to activate drugs so they work and their ability to break down drugs that are removed from the body. One example is clopidogrel, an antiplatelet drug used to prevent stroke or heart attack. If you’ve already had a heart attack and are trying to prevent another one, taking CBD may keep the liver from converting clopidogrel to its active form, resulting in another heart attack. There’s evidence that CBD also inhibits other enzymes that break down at least 50-60% of all prescription drugs. These enzymes break down opioids and other drugs that depress the nervous system, or CNS depressants. If you inhibit any one of these pathways, you may risk a drug overdose because your body can’t clear CNS depressants as quickly as it should. That’s because CBD slows down how quickly your body processes CNS depressants, so your body doesn't process them as quickly as it normally would. As a result, CNS depressants can rise to rise to dangerously high levels.

Given the issues with ensuring quality of CBD products you’ve highlighted, what are the key pointers you can offer readers to help them make better informed choices about CBD products?

CBD alone is a depressant. It has no euphoria, but is still a nervous system depressant even without THC.

Patients should contact their doctor or pharmacist about CBD. Unfortunately, even most of these health care professionals don’t know the real literature evidence about CBD. I recommend patients only rely on information they find on websites operated by the U.S. federal government, research universities and academic sites, such as the Mayo Clinic.

Understand that money is driving the CBD industry—not clinical efficacy. Only in rare pediatric seizure disorders does it have some current acknowledged clinical value.

REPLY
@steeldove

What We Don't Know About CBD Products Could Hurt Youcbd products
BY FRIEDA WILEY, PHARMD, RPH
SEPTEMBER 27, 2019
Medical marijuana has always been a popular – and not to mention, controversial – topic. But now, its grandchild, cannabidiol (CBD), is enjoying its own 15 minutes of fame. These days, it's virtually impossible to turn on the TV, surf the ‘net, or even cruise down the street without seeing or hearing something about CBD.

Though CBD comes from the same plant as marijuana, CBD has little, if any, tetrahydrocannabinol (THC), the chemical that gives marijuana its euphoric or hallucinogenic effects. So, as long as the amount of THC falls below a certain amount, CBD products are legal to sell (though that doesn’t guarantee that the products are entirely safe).

CBD is used to treat many health conditions such as seizures and other neurological disorders, pain, and inflammation. CBD comes in a wide variety of products and dosages: You can find CBD sold in tinctures, gummies, capsules, lozenges, oils, vape pens, sprays, creams, and suppositories, and more. But not all CBD products are safe – or are created equal. And the jury’s still out on the quality of these products and how well they work.

To get a better handle on the challenges, I spent some time chatting with my colleague, Michael Schuh, PharmD, MBA, FAPhA, a clinical pharmacist and assistant professor of family medicine, palliative medicine, and pharmacy at the Mayo Clinic in Florida. He also happens to be an expert in integrative medicine and CBD.

What’s the biggest misconception about CBD?

CBD is like a potent herbal supplement, but what many people don’t realize is that CBD has side effects and drug interactions just like any drug. Basically, if it’s a strong enough dose to cause therapeutic effects, it’s enough to cause side effects and drug interactions. Another problem is that few of the products are standardized or vetted to make sure you’re getting a pure and high-quality product. This makes it hard to know what you’re really using. In fact, there’s no real way to vet CBD products right now. Anything that you swallow, inhale, inject, or absorb through your skin that has direct contact with your bloodstream has a risk of unforeseen side effects or interactions.

Many companies say that CBD products are completely safe, but you mentioned that CBD products have drug interactions that are not widely known. Can you give us an example?

The liver plays an important role in how drugs work because it contains special catalysts, or enzymes that activate drugs so they can take an effect on the body. These enzymes may also help remove these drugs from the body after they’ve done their job. CBD slows down the liver enzymes' ability to activate drugs so they work and their ability to break down drugs that are removed from the body. One example is clopidogrel, an antiplatelet drug used to prevent stroke or heart attack. If you’ve already had a heart attack and are trying to prevent another one, taking CBD may keep the liver from converting clopidogrel to its active form, resulting in another heart attack. There’s evidence that CBD also inhibits other enzymes that break down at least 50-60% of all prescription drugs. These enzymes break down opioids and other drugs that depress the nervous system, or CNS depressants. If you inhibit any one of these pathways, you may risk a drug overdose because your body can’t clear CNS depressants as quickly as it should. That’s because CBD slows down how quickly your body processes CNS depressants, so your body doesn't process them as quickly as it normally would. As a result, CNS depressants can rise to rise to dangerously high levels.

Given the issues with ensuring quality of CBD products you’ve highlighted, what are the key pointers you can offer readers to help them make better informed choices about CBD products?

CBD alone is a depressant. It has no euphoria, but is still a nervous system depressant even without THC.

Patients should contact their doctor or pharmacist about CBD. Unfortunately, even most of these health care professionals don’t know the real literature evidence about CBD. I recommend patients only rely on information they find on websites operated by the U.S. federal government, research universities and academic sites, such as the Mayo Clinic.

Understand that money is driving the CBD industry—not clinical efficacy. Only in rare pediatric seizure disorders does it have some current acknowledged clinical value.

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Didn’t work for me

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When you get your card and if you dont want to smoke, id suggest trying a CBD and/or THC Tinctures. The THC tincture works for me and allows me to sleep at night. Good luck.

Liked by rwinney

REPLY
@steeldove

What We Don't Know About CBD Products Could Hurt Youcbd products
BY FRIEDA WILEY, PHARMD, RPH
SEPTEMBER 27, 2019
Medical marijuana has always been a popular – and not to mention, controversial – topic. But now, its grandchild, cannabidiol (CBD), is enjoying its own 15 minutes of fame. These days, it's virtually impossible to turn on the TV, surf the ‘net, or even cruise down the street without seeing or hearing something about CBD.

Though CBD comes from the same plant as marijuana, CBD has little, if any, tetrahydrocannabinol (THC), the chemical that gives marijuana its euphoric or hallucinogenic effects. So, as long as the amount of THC falls below a certain amount, CBD products are legal to sell (though that doesn’t guarantee that the products are entirely safe).

CBD is used to treat many health conditions such as seizures and other neurological disorders, pain, and inflammation. CBD comes in a wide variety of products and dosages: You can find CBD sold in tinctures, gummies, capsules, lozenges, oils, vape pens, sprays, creams, and suppositories, and more. But not all CBD products are safe – or are created equal. And the jury’s still out on the quality of these products and how well they work.

To get a better handle on the challenges, I spent some time chatting with my colleague, Michael Schuh, PharmD, MBA, FAPhA, a clinical pharmacist and assistant professor of family medicine, palliative medicine, and pharmacy at the Mayo Clinic in Florida. He also happens to be an expert in integrative medicine and CBD.

What’s the biggest misconception about CBD?

CBD is like a potent herbal supplement, but what many people don’t realize is that CBD has side effects and drug interactions just like any drug. Basically, if it’s a strong enough dose to cause therapeutic effects, it’s enough to cause side effects and drug interactions. Another problem is that few of the products are standardized or vetted to make sure you’re getting a pure and high-quality product. This makes it hard to know what you’re really using. In fact, there’s no real way to vet CBD products right now. Anything that you swallow, inhale, inject, or absorb through your skin that has direct contact with your bloodstream has a risk of unforeseen side effects or interactions.

Many companies say that CBD products are completely safe, but you mentioned that CBD products have drug interactions that are not widely known. Can you give us an example?

The liver plays an important role in how drugs work because it contains special catalysts, or enzymes that activate drugs so they can take an effect on the body. These enzymes may also help remove these drugs from the body after they’ve done their job. CBD slows down the liver enzymes' ability to activate drugs so they work and their ability to break down drugs that are removed from the body. One example is clopidogrel, an antiplatelet drug used to prevent stroke or heart attack. If you’ve already had a heart attack and are trying to prevent another one, taking CBD may keep the liver from converting clopidogrel to its active form, resulting in another heart attack. There’s evidence that CBD also inhibits other enzymes that break down at least 50-60% of all prescription drugs. These enzymes break down opioids and other drugs that depress the nervous system, or CNS depressants. If you inhibit any one of these pathways, you may risk a drug overdose because your body can’t clear CNS depressants as quickly as it should. That’s because CBD slows down how quickly your body processes CNS depressants, so your body doesn't process them as quickly as it normally would. As a result, CNS depressants can rise to rise to dangerously high levels.

Given the issues with ensuring quality of CBD products you’ve highlighted, what are the key pointers you can offer readers to help them make better informed choices about CBD products?

CBD alone is a depressant. It has no euphoria, but is still a nervous system depressant even without THC.

Patients should contact their doctor or pharmacist about CBD. Unfortunately, even most of these health care professionals don’t know the real literature evidence about CBD. I recommend patients only rely on information they find on websites operated by the U.S. federal government, research universities and academic sites, such as the Mayo Clinic.

Understand that money is driving the CBD industry—not clinical efficacy. Only in rare pediatric seizure disorders does it have some current acknowledged clinical value.

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Thank you for posting this.

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the length and value of the life of a person living with Neuropathy

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Good morning

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@fonda

Believe me the two sensations can co-exist. My neurologist explained it to me but I didn't understand even then.

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Interesting! It doesn't make any sense to me at all, but having said that – I hope I never have the experience to help me understand 😉

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