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Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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.

Leonard | @jakedduck1 | Dec 16, 2020
In reply to @deanbiglets "Hi, my name is Dean. I am an 81 year old female and was diagnosed with..." + (show)
@deanbiglets

Hi, my name is Dean. I am an 81 year old female and was diagnosed with peripheral neuropathy about 6 years ago. I am not diabetic, no obvious reason for neuropathy other than I had low B-12 (185). I now have a B-12 shot each month. My neuropathy has steadily gotten worse. I now take 1800 mg of Gabapentin daily. It bearly touches my numbness and pain, however if I forget to take a dose I am in worse pain a couple hours later. I have a pulling of the muscle (or ligament) in my feet, pulling inward, very painful. I have to force my foot back straight. Everything feel better when I walk, but my balance is not good. Any suggestions for something to help me?

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@helenholland3
@deanbiglets
@larrymc
@jesfactsmon
Like Hank mentioned seizure meds can cause it too. That's what happened to me. i’ve had neuropathy about 40 years. I went through all the horrendous pains of every sort and could barely walk. But my awful pains eventually went away. However the numbness never did go away it went from the bottom of my feet up to my waist. The lower it is the worse it is. I never found anything that could relieve my numbness. My doctor put me on fentanyl for other pain which had a beneficial affect on the neuropathy pains but not the numbness. I went up to 3600 mg, the maximum dose of Neurontin. It had no effect on my seizures or neuropathy. I knew of a patient who was taking 7000 mg of gabapentin but I don’t remember if he had any beneficial results. I wouldn’t think he would take that much medication if he didn’t help him. Like John I too have balance issues primarily from seizure medications and I do fall quite a bit but that’s primarily due to the fact that I have difficulty with numbness so I end up tripping myself.
Best wishes,
Jake

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cnn | @cnn | Dec 17, 2020

the "nero" in my hands and feet, particularly my hands. has become more evere over time. The queestion i have is;"Does this progression eventually lead to paralysis of the hands?"

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 17, 2020
In reply to @cnn "the "nero" in my hands and feet, particularly my hands. has become more evere over time...." + (show)
@cnn

the "nero" in my hands and feet, particularly my hands. has become more evere over time. The queestion i have is;"Does this progression eventually lead to paralysis of the hands?"

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@cnn I don't believe any of us has the answer to your question. I do think that we each have choices as to how we deal with the symptoms of neuropathy and we just take it day by day doing the best we can. For me, mild exercise makes me feel better even though it might not be doing anything for the neuropathy. Here's some information on how it can help.

- The Role of Rehabilitation in the Treatment of Peripheral Neuropathies: https://neuropathycommons.org/neuropathy/role-rehabilitation-treatment-peripheral-neuropathies
- Exercise + Physical Therapy For Neuropathy: https://www.foundationforpn.org/living-well/lifestyle/exercise-and-physical-therapy/

You mentioned in an earlier post that you had surgery for carpal tunnel syndrome. Have you had a chance to discuss your question with your doctor to see if they might have some suggestions?

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cnn | @cnn | Dec 17, 2020

Thank you for your reply, The only recommendation was to try vit. b12. Have" Stress Balls" that i use from time to time. Also heat as i have mentioned before. As we are often told as we grow older;"You'll have to learn to live with it." i do that by being thankful for all the decades everything worked so well and being grateful for what is left.

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onamission | @onamission | Dec 17, 2020
In reply to @cnn "Thank you for your reply, The only recommendation was to try vit. b12. Have" Stress Balls"..." + (show)
@cnn

Thank you for your reply, The only recommendation was to try vit. b12. Have" Stress Balls" that i use from time to time. Also heat as i have mentioned before. As we are often told as we grow older;"You'll have to learn to live with it." i do that by being thankful for all the decades everything worked so well and being grateful for what is left.

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cnn, is the B12 your using Methylcobalamin?. If not, try a fast melt sublingual form of Methylcobalamin. Methlcobalamin like Hydrocobalamin is a nerve healer. As we age intrinsic factor in our stomach declines causing poor B12 absorption Also research Benfotiamine a fat soluble form of thiamine (vitamin B1) for each of the symptoms you mentioned. Thiamine plays a major role in many areas of our bodies including eyes, GI system, nerves, heart and brain. Water soluble thiamine like vitamin D requires magnesium to become bioactive and may not pass through the blood/brain barrier as well as fat soluble forms. Look into the foods and drugs you are using for negative impacts on your thiamine. Take time to research the other B vitamins as they work better together. Always consult with your health care professional before using any supplement.

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1 reply
deanbiglets | @deanbiglets | Dec 17, 2020
In reply to @jesfactsmon "@deanbiglets Hi Dean, welcome to Connect! You are the second one that I know of who..." + (show)
@jesfactsmon

@deanbiglets
Hi Dean, welcome to Connect! You are the second one that I know of who said their peripheral neuropathy (PN) was caused by a low b12 level. Another member, @rwinney also developed near crippling neuropathy in many parts of her body (feet included) and is totally convinced ( as was her doctor) that low b12 put her in that condition. I have confirmed through some online research whereby other websites mention b12 as a possible cause of PN, so obviously a number of people are in that category. As far as the muscle issues you are experiencing, I do know that quite a few people here swear by Myofascial release, have you heard of it? There is a discussion here that addresses it that you might look at:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/?utm_campaign=search
This might be helpful to you, for both your feet and you knee issues.

Regarding medications, there seems to be a pattern I have noticed that physicians rely on which include gabapentin, Lyrica (pregabalin) and Cymbalta (duloxetine). Some people are helped by one of these, many are not. Many people after trying these unsuccessfully (like my wife) move on to a variety of relaxants and stimulants such as THC based marijuana or cannabis oil as well as kratom, ketamine, etc. You may eventually decided to explore one of these if you find nothing else for relief of your pain. I do hope you are able to find a way to cope with your pain so you can continue to lead a normal life. Unfortunately, my wife's PN in her feet/ankles (since 2014 from chemo) has reduced her world considerably, a very sad state of affairs. Best, Hank

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Thank you Hank I had not heard of myofascial therapy. I will look into this.

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deanbiglets | @deanbiglets | Dec 18, 2020
In reply to @onamission "cnn, is the B12 your using Methylcobalamin?. If not, try a fast melt sublingual form of..." + (show)
@onamission

cnn, is the B12 your using Methylcobalamin?. If not, try a fast melt sublingual form of Methylcobalamin. Methlcobalamin like Hydrocobalamin is a nerve healer. As we age intrinsic factor in our stomach declines causing poor B12 absorption Also research Benfotiamine a fat soluble form of thiamine (vitamin B1) for each of the symptoms you mentioned. Thiamine plays a major role in many areas of our bodies including eyes, GI system, nerves, heart and brain. Water soluble thiamine like vitamin D requires magnesium to become bioactive and may not pass through the blood/brain barrier as well as fat soluble forms. Look into the foods and drugs you are using for negative impacts on your thiamine. Take time to research the other B vitamins as they work better together. Always consult with your health care professional before using any supplement.

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Onamission, thank you fir your information. Yes I only use Methylcobalamin, not the synthetic lab made cobalamin, because it is more easily absorbed by the body. I know I should be taking more B vitamins and I plan to look into that. So thank you again.

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bustrbrwn22 | @bustrbrwn22 | Dec 18, 2020

@colleenyoung. @johnbishop. Hi Colleen. I stopped receiving my email notifications after John Bishop’s reply on Wednesday night. Could it be that my email bounced back to your server as undeliverable? I see sporadically over the months some of the emails go to my junk folder by my gmail account. Please help!

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Dec 18, 2020
In reply to @bustrbrwn22 "@colleenyoung. @johnbishop. Hi Colleen. I stopped receiving my email notifications after John Bishop’s reply on Wednesday..." + (show)
@bustrbrwn22

@colleenyoung. @johnbishop. Hi Colleen. I stopped receiving my email notifications after John Bishop’s reply on Wednesday night. Could it be that my email bounced back to your server as undeliverable? I see sporadically over the months some of the emails go to my junk folder by my gmail account. Please help!

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@bustrbrwn22, thanks for reporting this. @colleenyoung can check to see if you email is being bounced.

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1 reply
Faithwalker007 (Renee) | @faithwalker007 | Dec 18, 2020
In reply to @johnbishop "@bustrbrwn22, thanks for reporting this. @colleenyoung can check to see if you email is being bounced." + (show)
@johnbishop

@bustrbrwn22, thanks for reporting this. @colleenyoung can check to see if you email is being bounced.

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There are a lot of issues with Google and gmail right now.

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