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

Hi @mikween, I really don’t have any medical background or training to give advice. I can share what I’ve found out through my own research. I take a high amount of B12 (2 ML – about 40 drops of lipsomal liquid B12 per day) as part of a group of supplements but it is water soluble and not a problem. B1 I don’t take other than what I get through food. B6 is the one to be careful of dosage – easy to get B6 toxicity and hard to test for (my understanding).

Here are some links I’ve found on Mayo Clinic on dosage:

General vitamins dosage –
http://www.mayoclinic.org/documents/mc5129-0709-sp-rpt-pdf/doc-20079085

Vitamin B1 – Thiamin
http://www.mayoclinic.org/drugs-supplements/thiamine/dosing/hrb-20060129

Vitamin B6 –
http://www.mayoclinic.org/drugs-supplements/vitamin-b6/safety/hrb-20058788

Vitamin B6 Toxicity
http://www.easy-immune-health.com/vitamin-b6-toxicity.html

Vitamin B12
http://www.mayoclinic.org/drugs-supplements/vitamin-b12/background/hrb-20060243

Hope this helps…John

Jump to this post

Hi @mikween, thank you for the kind words!

Others on Connect have helped me a lot also which is what is great about this patient to patient community. You never know who you will help by sharing your story and struggles with a health problem.

John

REPLY
@johnbishop

Hi @mikween, I really don’t have any medical background or training to give advice. I can share what I’ve found out through my own research. I take a high amount of B12 (2 ML – about 40 drops of lipsomal liquid B12 per day) as part of a group of supplements but it is water soluble and not a problem. B1 I don’t take other than what I get through food. B6 is the one to be careful of dosage – easy to get B6 toxicity and hard to test for (my understanding).

Here are some links I’ve found on Mayo Clinic on dosage:

General vitamins dosage –
http://www.mayoclinic.org/documents/mc5129-0709-sp-rpt-pdf/doc-20079085

Vitamin B1 – Thiamin
http://www.mayoclinic.org/drugs-supplements/thiamine/dosing/hrb-20060129

Vitamin B6 –
http://www.mayoclinic.org/drugs-supplements/vitamin-b6/safety/hrb-20058788

Vitamin B6 Toxicity
http://www.easy-immune-health.com/vitamin-b6-toxicity.html

Vitamin B12
http://www.mayoclinic.org/drugs-supplements/vitamin-b12/background/hrb-20060243

Hope this helps…John

Jump to this post

Hi Kevin – I didn’t notice any difference in my neuropathy when I stopped drinking alcohol but I think if the neuropathy is alcohol related you would notice a difference. I have idiopathic small fiber peripheral neuropathy so I kind of viewed it as something that can make my neuropathy worse so I decided I didn’t need it anymore.

There does appear to be some evidence that alcohol induced neuropathy might be reversable. I found quite a few links on Google Scholar discussing it:

https://scholar.google.com/scholar?q=alcohol+induced+neuropathy+reversible&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ved=0ahUKEwiz1crQ0bHVAhUsxoMKHWdrBAwQgQMIJDAA

John

REPLY

Enjoyed your “rant” – it doesn’t seem fair that trying to cure one thing, starts a problem in another. I also have the PN and after having a hip replaced, began having knee problems. No cushioning left in knee but I’m finished with surgeries. Let me know when you plan to de-beard your therapist and perhaps you can arrange to film it so we can all enjoy.

REPLY
@johnbishop

Hi @mikween, I really don’t have any medical background or training to give advice. I can share what I’ve found out through my own research. I take a high amount of B12 (2 ML – about 40 drops of lipsomal liquid B12 per day) as part of a group of supplements but it is water soluble and not a problem. B1 I don’t take other than what I get through food. B6 is the one to be careful of dosage – easy to get B6 toxicity and hard to test for (my understanding).

Here are some links I’ve found on Mayo Clinic on dosage:

General vitamins dosage –
http://www.mayoclinic.org/documents/mc5129-0709-sp-rpt-pdf/doc-20079085

Vitamin B1 – Thiamin
http://www.mayoclinic.org/drugs-supplements/thiamine/dosing/hrb-20060129

Vitamin B6 –
http://www.mayoclinic.org/drugs-supplements/vitamin-b6/safety/hrb-20058788

Vitamin B6 Toxicity
http://www.easy-immune-health.com/vitamin-b6-toxicity.html

Vitamin B12
http://www.mayoclinic.org/drugs-supplements/vitamin-b12/background/hrb-20060243

Hope this helps…John

Jump to this post

Hi there John,
Idiopathic Small fiber neuropathy…. my exact diagnosis on top of Chronic Myofasial Pain Syndrome. Kind of gets you coming and going. Pain release massage therapy works wonders for me. This isn’t deep tissue but gentle pressure that slowly pushes the pain out. I also find that self guided meditation gets the mind on the same page, focused on pain release. Medicating in the morning to stay ahead of the pain is best for me. Compounded creams work to reduce the needles in hands and wrists. I just read an article in the WSJ of July 18 which reports on the progress being made using Virtual Reality technology to reduce pain. I would like to find a trial and participate. My ace in the hole is a loving supportive family and learning how to use MM appropriately. Never combine alcohol of any kind with MM. Oh….and my mindfulness mantra….right now this is the way it is and I need to rest my mind, spirit, and body. Then I exit whatever situation I find myself in and do just that for 15 minutes or so. What else are you doing to find joy and wonderful moments in every day? By the way, I do not use opioids or NSAIDs or any conventional medications. I also saw and worked with a nutritionist to make sure I introduce sufficent protein along with my lean and green choices.

Low barometric pressure that appears with storms or weather cells sends me to bed to wait it out. Do you notice increased pain as a result of pressure changes? Please share any other “learnings” that you have encountered.

Thanks….Chris

REPLY

I’m glad to hear someone else is bothered by barometric change. Several friends & I have noticed that our pain level increases & it seemed that was the factor.

REPLY

Yes. We are not crazy!!!! Pressure matters. What about altitude? I live half the time in the mountains at 6000 feet and the rest if my time at 0 feet on the Mississippi River. Beautiful locales but sea level seems less hospitable. And the plane ride leaves me really pain pooped. Takes a day or so to get my body and all it’s tissues, membranes and fibers adjusted. Any one else have effects from altitude change?

REPLY

Hi Chris (@artscaping), I’m fortunate (if you can call it that). I only have numbness and not pain with my neuropathy. I also have polymyalgia rheumatica which does give me a lot of pain in the shoulders, arms and hands. I really notice it gets worse when the weather changes – gets really hot or cold. I’m on my second occurrence of the PMR. It went away for 6 years and then came back last year. My stress reliever is my Canon Powershot SX50 HS with 50x optical zoom. I set it up on a tripod looking out the window next to my computer. Last year a setup a bird feeder about 20 feet from the house so I could take photos. So when I’m daydreaming it’s part of my routine to look for interesting shots through the window. It fills in the voids in between customer calls and slow days since I work from home as the local telco Internet help desk.

Beatiful Summer day here in Southern Minnesota – especially if you have a/c and you’re inside :-).

John

IMG_0889

IMG_0903

REPLY
@johnbishop

Hi Chris (@artscaping), I’m fortunate (if you can call it that). I only have numbness and not pain with my neuropathy. I also have polymyalgia rheumatica which does give me a lot of pain in the shoulders, arms and hands. I really notice it gets worse when the weather changes – gets really hot or cold. I’m on my second occurrence of the PMR. It went away for 6 years and then came back last year. My stress reliever is my Canon Powershot SX50 HS with 50x optical zoom. I set it up on a tripod looking out the window next to my computer. Last year a setup a bird feeder about 20 feet from the house so I could take photos. So when I’m daydreaming it’s part of my routine to look for interesting shots through the window. It fills in the voids in between customer calls and slow days since I work from home as the local telco Internet help desk.

Beatiful Summer day here in Southern Minnesota – especially if you have a/c and you’re inside :-).

John

Jump to this post

How beautiful. Do you have a page or site for your photos. Yes in one way you are lucky not to have to deal with neuropathy pain. The other thing that happens with the small fiber stuff is dehydration–not enough moisture being carried by those tiny fibers. So dry eyes, mouth, skin, etc. what do you do for that if you experience it? Being in higher humidity in MN helps the eyes. We have a smorgasbord bird feeder, Our hummingbirds follow us around when we have the feeder in our hand. And I am always feeding a chipmunk or two right friom my hand. Interesting at home work you have. I am the Mkt Director for our community center. Also on the design team. A bit too much sometimes. Don’t do well at long meetings. Please stay in touch. I will be heading back to MN in September. Currently in the San Jacinto Mts if CA.

REPLY

@artscaping Barometric pressure has become a beastly burden…Doppler is always behind. Back to escaping into my art.

REPLY

@johnbishop Beware those House Finches as they are voracious and greedy. Great shot of a young Cardinal. Off topic again…name this delightful backyard bird.

Patio Guest

REPLY
@johnbishop

Hi Chris (@artscaping), I’m fortunate (if you can call it that). I only have numbness and not pain with my neuropathy. I also have polymyalgia rheumatica which does give me a lot of pain in the shoulders, arms and hands. I really notice it gets worse when the weather changes – gets really hot or cold. I’m on my second occurrence of the PMR. It went away for 6 years and then came back last year. My stress reliever is my Canon Powershot SX50 HS with 50x optical zoom. I set it up on a tripod looking out the window next to my computer. Last year a setup a bird feeder about 20 feet from the house so I could take photos. So when I’m daydreaming it’s part of my routine to look for interesting shots through the window. It fills in the voids in between customer calls and slow days since I work from home as the local telco Internet help desk.

Beatiful Summer day here in Southern Minnesota – especially if you have a/c and you’re inside :-).

John

Jump to this post

San Jacinto Mountains are beautiful. I grew up in San Bernardino. That tram ride up the mountain from outside of Palm Springs (can’t remember exactly it’s been so long) is awesome – from 100+ degrees at the bottom to the 60s when you get to the top. I took my wife up there after I got out of the Navy to do some sightseeing.

I do have the dry skin on my legs, feet, arms and hands. I’ve been using O’Keeffe’s Working Hands for my hands since it doesn’t feel greasy. I have been using Life-flo Magnesium Lotion for my feet and legs. I have issues with my eyes also – seems hard to focus sometimes. I got new glasses this year and got an extra set of fixed distance ones for the computer but still have trouble sometimes. I’m guessing it could related to dry eyes. I did buy some eye drops that didn’t have any chemicals in them for a lubricant but I can’t really tell if it helps so I just plod along and take more breaks ☺.

I’ve put a few up on my Instagram account (reala2g2) but I don’t use it very much. I’ve been trying to catch a hummingbird photo but haven’t had the camera ready when I’ve seen them and they don’t stick around long enough. I’ve got hummingbird feeder in my front yard and have occasionally seen one but the camera is always downstairs on the tripod. That’s pretty awesome to have them following you around with the feeder in your hands.

John

REPLY

@artscaping “Pain pooped”-delightful pictorial. Thanks for the chuckle. Back to the paintbrushes woman!!

REPLY
@parus

@johnbishop Beware those House Finches as they are voracious and greedy. Great shot of a young Cardinal. Off topic again…name this delightful backyard bird.

Jump to this post

Nice photo @parus ! – Looks like a Downey Woodpecker.

Liked by Parus

REPLY

@mfobrien36 Ha-Ha…I so enjoy folks w/ a sense of humor…it would go viral!!!!

REPLY

@penadr We ought to all get together and obliterate Doppler Radar…a thought from a living, breathing barometer that would that I could on those wearisome, painful days defy gravity.

REPLY
Please login or register to post a reply.