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?

@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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@bruce2666

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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That is a great improvement. I was just wondering if the laser folks did any measurements. Pain would be the big measurement for me also if I had pain.

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@bruce2666

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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What type of laser treatment are you dis cussing?

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Your replies are so interesting … The descriptions of Neuropathy that I read before I joined this group suggested that it was just a complication of diabetes that felt like tingles and needle sticks — it's way more than that. I was already far beyond the 'needles and tingles' stage and experiencing acute pain; and I'm hypoglycemic, not diabetic, so I didn't know which end was up. I am learning from all of you that there are is a kaleidoscope of symptoms and remedies; most of us seem to be trying new things as we deal with the progression of our condition. It is helpful that we share information here. Peggy

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@pfbacon

Your replies are so interesting … The descriptions of Neuropathy that I read before I joined this group suggested that it was just a complication of diabetes that felt like tingles and needle sticks — it's way more than that. I was already far beyond the 'needles and tingles' stage and experiencing acute pain; and I'm hypoglycemic, not diabetic, so I didn't know which end was up. I am learning from all of you that there are is a kaleidoscope of symptoms and remedies; most of us seem to be trying new things as we deal with the progression of our condition. It is helpful that we share information here. Peggy

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Hi Peggy @pfbacon … you have the key! We all share and learn what helps others and may work for us. The more we can learn, the better chance we have of helping ourselves (and hopefully our doctors if we find something that works for us).

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@ospreysurf

What type of laser treatment are you dis cussing?

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I go to Dr Schwartz in Greenville SC for my laser treatment. You can read about it below at his website. I have gotten about 50% pain relief as long as I take the treatments. I have no numbness only pain.

What is Realief Therapy?

Realief Therapy utilizes a proprietary Class IV therapeutic laser. The laser delivers a specific frequency of light to create a photoelectric effect at the nerve membrane layer. This results in chemical, physiologic, mechanical and structural changes in nerve cell membranes and the surrounding tissue. This process results in a reduction in severity of peripheral neuropathy symptoms – meaning less pain

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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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Needs to be at least 1000mg cbd oil. Helped a little at night sleeping.

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