Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@polywog

Hi. For idiopathic small fiber neuropathy, I am prescribed:

Gabapentin 600 mg 3X

Nucynta 50 mg 4X

Nucynta ER (extended release) 100 mg 2X

Nucynta is a combination of opiod and norepinephrine reuptake inhibitor

My pain is very well-managed with these meds.

I hope you find a way…

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Those are extremely addictive I won’t take opiumates

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@alawildman

Those are extremely addictive I won’t take opiumates

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Gabapentin is not a narcotic. Nucynta is.

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@alawildman

Ten years or longer Debillatatiing disease I’ve spent a lot of money nothing’s helped I play several musical instruments and can’t enjoy it much anymore because of the pain

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Hello @alawildman, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Sorry to hear you've been battling peripheral neuropathy for 10+ years. I think most of us long haul neuropathy members have spent and wasted a lot of money trying to find that magic cure when there really is none. You might find these discussions helpful:

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Living with Neuropathy - Welcome to the group: https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

Are you able to share a little more about your diagnosis and treatments you have tried?

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@alawildman

Those are extremely addictive I won’t take opiumates

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I never thought I would either. I have never escalated in over five years. And I’ve tried everything else. Without them, I would rather die.

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@alawildman

Those are extremely addictive I won’t take opiumates

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And I’m very happy for you if you have found something that has worked for you. many of us are not that lucky. Many of us have tried everything. Desperate times, desperate measures. I know the risk. I knew it before I took it.

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@julkun

and does it work? Which Kratom? Seems like a lot

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Red Maeng da if I spelled it right. It’s 100 percent natural and I never had any problems quitting. I’ve been relieving my pain about ten years with it. Also helps with depression.

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I'm dealing with it in my feet and ankles, but only since starting pramipexole. I finally put 2 & 2 together today and will be weaning myself off of it. It has gotten progressively worse over the couple of years I've been on it. Any advice would be greatly appreciated!

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I am! I am so disgusted with the tingling and burning in my feet. Now and ankles feel so weird. Why can nothing be done?????

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@janc56

I'm dealing with it in my feet and ankles, but only since starting pramipexole. I finally put 2 & 2 together today and will be weaning myself off of it. It has gotten progressively worse over the couple of years I've been on it. Any advice would be greatly appreciated!

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Hello @janc56, Welcome to Connect, an online community where patients share their experiences, find support and exchange information with others. If you don't mind sharing, was the pramipexole (Mirapex) prescribed to treat restless leg syndrome or Parkinson's disease? Have you discussed tapering off of the drug with your doctor or asked if there may be an alternative?

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@bethwiseman

I am! I am so disgusted with the tingling and burning in my feet. Now and ankles feel so weird. Why can nothing be done?????

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Hi Beth, Sorry to hear you haven't found anything that gives you some relief for your tingling and burning feet. Have you seen the following discussions? Just wondering it others may have shared something that may help you also.

-- Burning feet and legs: https://connect.mayoclinic.org/discussion/burning-feet-and-legs/
-- neuropathy and burning feet: https://connect.mayoclinic.org/discussion/neuropathy-4/
-- Burning Feet syndrome: https://connect.mayoclinic.org/discussion/burning-feet-syndrome/

You may have seen some of the home remedies but they may be helpful if you haven't already tried them.
-- 9 home remedies for burning feet: https://www.medicalnewstoday.com/articles/home-remedies-for-burning-feet

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