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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

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.

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@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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@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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@rwinney

Good to know, thanks. I'm beginning Medicare in 2020 and Neuro said no way will they cover IVIG without a major fight. All so interesting. Time will tell.

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Dang....
Tell your doctor to fight....it is worth it

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@mcgatt

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

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Hello @mcgatt, That is a very heavy statement that I'm not sure even the worlds smartest doctor could answer. There is another discussion that you may want to participate in here:

> Groups > Just Want to Talk > Just Want To Talk: Rational Thoughts about Mortality and Time
-- https://connect.mayoclinic.org/discussion/just-want-to-talk/

Here is an article that I posted in the above discussion that provides some thoughts.
20 Brutal Truths About Life No One Wants to Admit: Time is your most valuable asset–you need to prioritize how you spend it.
https://www.inc.com/matthew-jones/20-brutal-truths-about-life-no-one-wants-to-admit.html

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@mcgatt

Good morning

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Good morning! Another day of nerve pain, no sleep, and so tired of hurting everyday! Will it ever end! Merry Christmas to all in pain,I hope it changes next year!

Sent on my Boost Mobile Samsung Galaxy S® 6
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@resawaller

Good morning! Another day of nerve pain, no sleep, and so tired of hurting everyday! Will it ever end! Merry Christmas to all in pain,I hope it changes next year!

Sent on my Boost Mobile Samsung Galaxy S® 6
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Try red Kratom! Have started it for neuropathy

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