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?

@pfbacon

What are the differences between the different 'types' of neuropathy? Peggy

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Hi Peggy, probably the best easy to understand explanations I've heard are from Matthew B. Jensen, MD – a stroke neurologist at the University of Wisconsin in Madison. He has a YouTube channel with quite a few introductory type videos. Here's the link.
https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ?reload=9
John

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Hello Members, I had just asked the question about CBD oil. I actually got CBD in a pill form and small bottle form. It must be from hemp as I don't think the THC is legal in Missouri. My neuropathy is mostly in my toes shins and calfs of my legs. I have been told it will get worse with time. So far after one week the CBD doesn't seem to have much effect .The small bottles with the eye dropper, I was told to put it under my tongue. Should I be used on the skin of the pain area ? Thanks, Jerry

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Hi Colleen, I had posted a question about the use of CBD as I received small bottles with an eye droppers and a bottle of pills. Should it be applied to the skin?

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@stlouismo

Hi Colleen, I had posted a question about the use of CBD as I received small bottles with an eye droppers and a bottle of pills. Should it be applied to the skin?

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Hello @stlouismo — welcome to Mayo Clinic Connect. There is another discussion on Connect that you may want to read and post any questions in for more visibility:

Groups > Neuropathy > CBD oil for Neuropathy
https://connect.mayoclinic.org/discussion/cbd-oil-for-neuropathy/

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@stlouismo

Hello Members, I had just asked the question about CBD oil. I actually got CBD in a pill form and small bottle form. It must be from hemp as I don't think the THC is legal in Missouri. My neuropathy is mostly in my toes shins and calfs of my legs. I have been told it will get worse with time. So far after one week the CBD doesn't seem to have much effect .The small bottles with the eye dropper, I was told to put it under my tongue. Should I be used on the skin of the pain area ? Thanks, Jerry

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Your CBD isn't strong enough. Try 250 CBD then go up from there. I like ointment because I can rub more on throughout the day as needed. I found that pills and under the tongue tincture didn't work for me.

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@sherlock

Your CBD isn't strong enough. Try 250 CBD then go up from there. I like ointment because I can rub more on throughout the day as needed. I found that pills and under the tongue tincture didn't work for me.

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I will try rubbing on. Pills and under tongue didnt work no matter how many drops I used but didnt overdo. I have spinal defects and CRPS and arthritis and sciatica. Would love relief. No meds seem to help. Had several spinal surgeries and fusions.

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Thank You Sherlock for the information I will look for the ointment and try that so far my pain is in my toes,calf muscles, and shines. I was tested and told I had peripheral neuropathy that would get worse but I have not seen a big change in two years. I should count my blessings. Merry Christmas to all.@stlouismo

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@stlouismo

Thank You Sherlock for the information I will look for the ointment and try that so far my pain is in my toes,calf muscles, and shines. I was tested and told I had peripheral neuropathy that would get worse but I have not seen a big change in two years. I should count my blessings. Merry Christmas to all.@stlouismo

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My neuropathy started slowly, but has worsened over the years. One thing I know is that exercise helps along with a sugar free, Gluten free diet. Merry Christmas!!

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@stlouismo

Hello Members, I had just asked the question about CBD oil. I actually got CBD in a pill form and small bottle form. It must be from hemp as I don't think the THC is legal in Missouri. My neuropathy is mostly in my toes shins and calfs of my legs. I have been told it will get worse with time. So far after one week the CBD doesn't seem to have much effect .The small bottles with the eye dropper, I was told to put it under my tongue. Should I be used on the skin of the pain area ? Thanks, Jerry

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I tried 30cbd//1thc drops under my tongue for 10 days with no relief, i take two-100 mg lyrica per day which really helps but im still searching to get away from that type of meds

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@sherlock

My neuropathy started slowly, but has worsened over the years. One thing I know is that exercise helps along with a sugar free, Gluten free diet. Merry Christmas!!

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The more you walk the better it seems to feel and sugar definitly fires it up

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@ospreysurf

I tried 30cbd//1thc drops under my tongue for 10 days with no relief, i take two-100 mg lyrica per day which really helps but im still searching to get away from that type of meds

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What is wrong with Lyrica ? Walking and running also make me feel better – might be those endorphins I've heard about … Peggy

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@fonda

i think that medical cannabis is worth a try. I tried it because I had read Of success for some. I was on it for three months and gastric side effects kicked in before any pain relief. In the state where I live you must be certified by a physician and then you are under the supervision of an experienced pharmacist. I was using three forms of the cannabis , starting with very low doses and gradually increasing. The program here requires close monitoring and i received that.

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Hi

Thank you very much for your reply concerning medical cannabis.i discussed it with my neurologist when I saw him back in November and he said it was worth giving it a try but that he has had mixed reviews from his patients. I will make an appointment with the general practitioner in early January to obtain a prescription. My symptoms have been pretty severe lately but am trying to focus,on other things instead but it's very difficult! Anyway I wish you all the best and hope we all manage to find help in coping with our pain in 2019.
Best wishes Danielle from London, UK

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As info I was diagnosed with PN in 2003. Am not diabetic. Blood tests all normal. No numbness only pain with pins and needles in feet and legs and feel it progressing into my arms and back. Had every neurological test available and no known cause. Even went to Duke for 2nd opinion. I take 125mg lyrical per day and it helps. I have also been having laser treatments and I have improved 50%. Started 2 times per week and go 1 time week now. It is expensive and Medicare does not cover. It is $255 per treatment but worth it to me to get relief. Exercise helps me a lot but temporary.

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@bruce2666

As info I was diagnosed with PN in 2003. Am not diabetic. Blood tests all normal. No numbness only pain with pins and needles in feet and legs and feel it progressing into my arms and back. Had every neurological test available and no known cause. Even went to Duke for 2nd opinion. I take 125mg lyrical per day and it helps. I have also been having laser treatments and I have improved 50%. Started 2 times per week and go 1 time week now. It is expensive and Medicare does not cover. It is $255 per treatment but worth it to me to get relief. Exercise helps me a lot but temporary.

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Hello @bruce2666, welcome to Mayo Clinic Connect. Thank you for posting what helps with your neuropathy. I also have idiopathic small fiber PN but I don't have any pain with mine. I only have the numbness so there is nothing they can give you to help with numbness. They suspect my PN may be hereditary but they don't know and at this point for me it doesn't matter. Exercise helps me also and mostly keeps me focusing on something else other than my feet and numbness. I did look into laser treatments earlier but with no guarantees I decided it wasn't worth the cost for me.

If you don't mind my asking, you mentioned you have improved 50% after the laser treatments, how did were they able to measure the improvement? I take over the counter supplements to help with my PN and saw some improvement initially but then haven't seen much since. On the flip side, my PN hasn't seemed to gotten any worse the past 2 years so I count that as a big plus since my neurologist told me it would continue to get worse.

John

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@johnbishop

Hello @bruce2666, welcome to Mayo Clinic Connect. Thank you for posting what helps with your neuropathy. I also have idiopathic small fiber PN but I don't have any pain with mine. I only have the numbness so there is nothing they can give you to help with numbness. They suspect my PN may be hereditary but they don't know and at this point for me it doesn't matter. Exercise helps me also and mostly keeps me focusing on something else other than my feet and numbness. I did look into laser treatments earlier but with no guarantees I decided it wasn't worth the cost for me.

If you don't mind my asking, you mentioned you have improved 50% after the laser treatments, how did were they able to measure the improvement? I take over the counter supplements to help with my PN and saw some improvement initially but then haven't seen much since. On the flip side, my PN hasn't seemed to gotten any worse the past 2 years so I count that as a big plus since my neurologist told me it would continue to get worse.

John

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Hey John. Well there is no cure for PN. But the way I measure improvement with the laser treatments is the pain relief I receive and it is about 50% which is great for me. Bruce

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