Living with Neuropathy - Welcome to the group

Posted by Colleen Young @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?

@summertime4

I sure will I should have the results next week. Did they ever find a reason for your lymphedema diagnosis?

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@summertime4 — looking back on my medical notes from the doctor, my diagnosis is mild bilateral venous insufficiency with my right leg worse than the left. The Lymphoscintigraphy was negative for lymphedema so I have been mistaken about having lymphedema. The doctors report says bilateral lower extremity edema, worse on the right compared to the left. Not sure why I had it in my head that I have lymphedema. The doctor said — "There is no notable pathology to explain his edema. When comparing the right to the left ventricular size, there does appear to be some enlargement of the right ventricle". So I guess in addition to idiopathic small fiber PN I also have idiopathic edema ☺

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@mathewv

Hey there. I have been diagnosed with small fiber peripheral neuropathy and benign fasciculation syndrome, a condition which causes my calf muscles to twitch constantly. I am also bothered intermittently by restless leg syndrome. According to my neurologist all three conditions are related. Ain't we got fun?

The main problem is the burning in my feet from the neuropathy which makes it difficult to sit for prolonged periods (notably at work) without shifting around, getting up to stretch or taking a walk. Because a blood test showed that I had elevated homocysteine levels, the neurologist put me on Metanx, a prescription vitamin b supplement which in theory would lower my homocysteine and solve my problem. Unfortunately, the medicine gave me heart palpitations and so I discontinued using it. A follow-up blood test showed the homocysteine back to normal levels and my primary care physician concluded that that was not the problem to begin with since the burning persisted, while my neurologist thought that it might have worked given more time.

I am now taking neurotin without any noticeable relief. This has been going on for about 2 years and it has really affected my quality of life. So I'm here to find out what the hell can be done to make me feel normal again. Is there anything that works against this infernal condition?

Thanks,

Mat

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Hello Mat @mathewv — Welcome to Connect. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where it will receive more visibility.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I also have small fiber peripheral neuropathy but don't have pain with it. I only have the numbness. I posted what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

You may also be interested in the following discussions on Connect:

> Groups > Sleep Health > Restless Leg Syndrome
https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/
> Groups > Neuropathy > Calmare (scrambler) Therapy anyone?
https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you found any treatment that gives you some relief?

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@johnbishop

Hello Mat @mathewv — Welcome to Connect. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where it will receive more visibility.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I also have small fiber peripheral neuropathy but don't have pain with it. I only have the numbness. I posted what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

You may also be interested in the following discussions on Connect:

> Groups > Sleep Health > Restless Leg Syndrome
https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/
> Groups > Neuropathy > Calmare (scrambler) Therapy anyone?
https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you found any treatment that gives you some relief?

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Hi John. I'm okay when I'm in motion. Exercise helps. I only seem to notice the symptoms when I'm at rest, particularly when I'm sitting. I don't feel pain either, just an aggravating burning sensation. It's worse at work sitting in front of a computer than when I'm stretched out in my recliner watching tv at home. It also tends to flare up when I'm particularly stressed out, which happens often since I've also been diagnosed with generalized anxiety disorder!

Meditation helps but it's no cure. Taking lots of Lyrica helps, as does Xanax, but obviously neither is the permanent, long-lasting solution I'm looking for. I'm at a loss. I really don't know what to do. That's why I'm here.

Mat

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@johnbishop

Hello Mat @mathewv — Welcome to Connect. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where it will receive more visibility.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I also have small fiber peripheral neuropathy but don't have pain with it. I only have the numbness. I posted what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

You may also be interested in the following discussions on Connect:

> Groups > Sleep Health > Restless Leg Syndrome
https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/
> Groups > Neuropathy > Calmare (scrambler) Therapy anyone?
https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you found any treatment that gives you some relief?

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I just joined that Facebook group, although I'm a little confused as to what it's all about. Is it just taking a certain regimen of vitamins and supplements. If so, why not simply list everything that should be taken?

REPLY

Hey there. I have been diagnosed with small fiber peripheral neuropathy and benign fasciculation syndrome, a condition which causes my calf muscles to twitch constantly. I am also bothered intermittently by restless leg syndrome. According to my neurologist all three conditions are related. Ain't we got fun?

The main problem is the burning in my feet from the neuropathy which makes it difficult to sit for prolonged periods (notably at work) without shifting around, getting up to stretch or taking a walk. Because a blood test showed that I had elevated homocysteine levels, the neurologist put me on Metanx, a prescription vitamin b supplement which in theory would lower my homocysteine and solve my problem. Unfortunately, the medicine gave me heart palpitations and so I discontinued using it. A follow-up blood test showed the homocysteine back to normal levels and my primary care physician concluded that that was not the problem to begin with since the burning persisted, while my neurologist thought that it might have worked given more time.

I am now taking neurotin without any noticeable relief. This has been going on for about 2 years and it has really affected my quality of life. So I'm here to find out what the hell can be done to make me feel normal again. Is there anything that works against this infernal condition?

Thanks,

Mat

REPLY
@mathewv

I just joined that Facebook group, although I'm a little confused as to what it's all about. Is it just taking a certain regimen of vitamins and supplements. If so, why not simply list everything that should be taken?

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You are right. This would be so much simpler to understand if the supplements that are being recommended to help relieve the PN would be listed individually by brand name, how much to take of each, frequency to take, and where to purchase.

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@mathewv

I just joined that Facebook group, although I'm a little confused as to what it's all about. Is it just taking a certain regimen of vitamins and supplements. If so, why not simply list everything that should be taken?

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If you read through the groups new member welcome page you will get a better understanding. Each supplement has a specific purpose to support nerve health. The website for the group http://solutions2pnpd.com/ does have links that list the different elements along with a link to order it from Amazon. The groups Facebook page has a lot of research documents in their Files section and they encourage you to learn for yourself and be your own advocate. Good luck!

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@contentandwell

Thanks, @margottaylor Now if I can just work up the confidence to be the newbie in a class I will go. I cannot stand for long on one foot, barely at all on right. All of the instructors at my club are very good about telling people to modify to meet their own abilities. I know nothing about Barre really and have presumed that it would be too much for me. I'm not in bad shape for my age, I go the gym at the club generally 3 days a week and do water aerobics another three days a week, but I am old (71) and went too many years being too sedentary and very overweight.
JK

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JK… I’m 72 and I can’t stand on one leg, and can barely stand on two legs, without my braces. You sound strong of mind to get your body doing the best it can. So I encourage you to start with whatever class or practice or teacher that really appeals to you. Harness your courage and ask your instructors HOW to safely modify a pose that’s not working and bit by bit you will find yourself an happy old yogi or Barre fanatic or Tai Chi convert. Just do it! You’re going to do great JK

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@johnbishop

If you read through the groups new member welcome page you will get a better understanding. Each supplement has a specific purpose to support nerve health. The website for the group http://solutions2pnpd.com/ does have links that list the different elements along with a link to order it from Amazon. The groups Facebook page has a lot of research documents in their Files section and they encourage you to learn for yourself and be your own advocate. Good luck!

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My membership in the FB group is still pending. Maybe I didn't answer the three introductory questions to their liking. Ha ha

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@jola65

Hi I’m 53 years old woman with no hope for tomorrow please help if anyone knows anything please share.
Beginning of the symptoms started 10 years ago positional vertigo tinnitus tingling in my feet and hands and then it progressed to severe pain all over the body burning sensation extremely intense electric shock like severe sensation running through my body from top to bottom tingling numbness brain fog Trouble concentrating. Feet legs hands and arms extreme numbness that stays four hours. It spreads to upper back shoulders and side of my face nothing helps to relieve the symptoms. Red purple feet hands and nose at the time burning increases to unbearable. Chronic constipation happens all the time. Sleep problems pain wakes me up around 4 AM and then I can fall back asleep, cause me to feel tired throughout the day and then I take naps .
When I nap during the day I feel my pain increasing to such extreme levels but I cannot wake up from it. I feel tremors in my body as if I was cold but I am not called this only happens during the daytime naps not at night. Tinnitus is not as bad as before gabapentin and Cymbalta helps a little. A lingering tiredness and feeling drained like having the flu fatigue to the point that I can’t do anything my muscles are not week because I know I am strong but I don’t feel like I have enough energy to do anything and the pain makes me feel almost like I run a marathon . I feel like I have no control over my body, mind for future. The stress with pain physical changes and managing daily life, makes me sad worried and depressed. Overwhelmed with axiety and depression, struggle to cope. 😓

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Hello @jola65, there is another discussion for neuropathy where your post will receive more visibility. I'm tagging our director @colleenyoung to see if we should move your post to the following discussion.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

You posted in an earlier post that you had an upcoming appointment at Mayo Clinic. Have you had the appointment yet? Did you receive a diagnosis?

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@jola65

Hi I’m 53 years old woman with no hope for tomorrow please help if anyone knows anything please share.
Beginning of the symptoms started 10 years ago positional vertigo tinnitus tingling in my feet and hands and then it progressed to severe pain all over the body burning sensation extremely intense electric shock like severe sensation running through my body from top to bottom tingling numbness brain fog Trouble concentrating. Feet legs hands and arms extreme numbness that stays four hours. It spreads to upper back shoulders and side of my face nothing helps to relieve the symptoms. Red purple feet hands and nose at the time burning increases to unbearable. Chronic constipation happens all the time. Sleep problems pain wakes me up around 4 AM and then I can fall back asleep, cause me to feel tired throughout the day and then I take naps .
When I nap during the day I feel my pain increasing to such extreme levels but I cannot wake up from it. I feel tremors in my body as if I was cold but I am not called this only happens during the daytime naps not at night. Tinnitus is not as bad as before gabapentin and Cymbalta helps a little. A lingering tiredness and feeling drained like having the flu fatigue to the point that I can’t do anything my muscles are not week because I know I am strong but I don’t feel like I have enough energy to do anything and the pain makes me feel almost like I run a marathon . I feel like I have no control over my body, mind for future. The stress with pain physical changes and managing daily life, makes me sad worried and depressed. Overwhelmed with axiety and depression, struggle to cope. 😓

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Actually my apt is tomorrow. I’m excited about it and nerves at the same time.

REPLY

Hi I’m 53 years old woman with no hope for tomorrow please help if anyone knows anything please share.
Beginning of the symptoms started 10 years ago positional vertigo tinnitus tingling in my feet and hands and then it progressed to severe pain all over the body burning sensation extremely intense electric shock like severe sensation running through my body from top to bottom tingling numbness brain fog Trouble concentrating. Feet legs hands and arms extreme numbness that stays four hours. It spreads to upper back shoulders and side of my face nothing helps to relieve the symptoms. Red purple feet hands and nose at the time burning increases to unbearable. Chronic constipation happens all the time. Sleep problems pain wakes me up around 4 AM and then I can fall back asleep, cause me to feel tired throughout the day and then I take naps .
When I nap during the day I feel my pain increasing to such extreme levels but I cannot wake up from it. I feel tremors in my body as if I was cold but I am not called this only happens during the daytime naps not at night. Tinnitus is not as bad as before gabapentin and Cymbalta helps a little. A lingering tiredness and feeling drained like having the flu fatigue to the point that I can’t do anything my muscles are not week because I know I am strong but I don’t feel like I have enough energy to do anything and the pain makes me feel almost like I run a marathon . I feel like I have no control over my body, mind for future. The stress with pain physical changes and managing daily life, makes me sad worried and depressed. Overwhelmed with axiety and depression, struggle to cope. 😓

REPLY
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