Living with Neuropathy - Welcome to the group

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

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?

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?

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

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!

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. 😓

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. 😓

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. 😓

I am just wondering if anyone has been successful in reversing their neuropathy?