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?

@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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Depressing

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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
——– Original message ——–

Liked by rwinney

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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
——– Original message ——–

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Try red Kratom! Have started it for neuropathy

Liked by rwinney

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@ginthert

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

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Thank you for your advice.

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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
——– Original message ——–

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Try googling: ultrasound therapy treatments for pain and see if you want to try ultrasound treatments.

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@maryv449

Try googling: ultrasound therapy treatments for pain and see if you want to try ultrasound treatments.

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Didn’t work on my neuropathy! Insurance wouldn’t cover it!

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@johnbishop

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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My daughter, who has suffered from migraines for years, has ordered green lights for herself and for me. I'm eager to see if it helps at all with neuropathy, and will post updates here.

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I bought some cream called "Neuropathy" for around $20 and it does calm the pain down enough to go to sleep for now. A lot of things work for a while and then stop. I tried Hemp cream etc. so far this one works. .

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@wilcy

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!

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Sounds good

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@maryv449

I bought some cream called "Neuropathy" for around $20 and it does calm the pain down enough to go to sleep for now. A lot of things work for a while and then stop. I tried Hemp cream etc. so far this one works. .

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I use Neuropathy oil. Myrhh and frankincense. Works well

Liked by Leonard

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@steeldove

@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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There must be some drug free way to overcome chronic pain . Mind over matter. Or yoga technique. Yoga has been around for a long time. The yogis must be able to give us help in this crucial concern of dealing with life debilitating pain!

Liked by steeldove, Leonard

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@dawn67

I was just diagnosed with neuropathy. I’m in a lot of pain with numbness, tingling etc. I know it’s due to my alcoholism and have stopped drinking. What can I do outside of prescribed meds to give me a little comfort with the aches, pains tingling, etc. Since this is so new to me, I’m looking for some facts before I deal with the emotional side of it.

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Dawn67 – just curious, and alcohol's impact on neuropathy has been discussed here before. Question is, how much is too much?
Of course someone who drinks 1/5 a day would know that’s too much and definite cause and effect. Some of us enjoy the mental break from our pain and want to drink in the evenings. But then is it just adding to the viscous cycle? Please share what you can about frequency, amount, years of use and it’s impact on neuropathy. Mine has no determined cause but I am determined to figure this out. Most of my life drank little, some years only typical young adult weekend fun, later years with stressful job a little more Frequently and quantity….
Thank you for any insight

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Pint every day! Only thing helping neuropathy! Had shots, gaba etc!

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