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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)

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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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Replies to "Hey there. I have been diagnosed with small fiber peripheral neuropathy and benign fasciculation syndrome, a..."

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?