Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

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

@pamelaz

I have neuropathy bad. Tried Gabapentin, Cymbalta and Lyrica now my seizure medicines are effecting it. What is ALA?

Jump to this post

To pamelaz - ALA - Alpha Lipoic Acid. Neuro doc at University of PA suggested it, I find it helps. I recently ordered on Amazon R-ALA and I think it helps a little more with improved feeling in feet. What is unfortunate is that the only way I would know if it were now not helping would be to discontinue which I don't want to do. By the way, I'm also on seizure control med. Ed

REPLY

Idiopathic diagnosis of neuropathy and EM (Erythromelagia).

I too want to connect with others.

Taking pregabalin, vitamin supplements and various creams for feet. ( topical magnesium, lidocaine, CBD cream, arnica).

One doesn’t know how things work until you stop.

Interesting that there are really good days and really bad days. What’s with that.

EM causes flares from many things. A burning of feet red feet and hands , face flush.

Thanks for letting me participate.

REPLY

I completely agree with your statement, "One doesn’t know how things work until you stop". This applies to many people throughout this forum and the world suffering with chronic pain.

The trial and error of what works then playing the elimination game when things go awry. I've been down this road in the past 10 months myself and slowly introduce and eliminate things back into and out of my life with treatments, pharmaceuticals, home exercise (i.e. intensity of sets), diet, homeopathic solutions, different types of marijuana delivery systems, etc.

Even though we differ in diagnosis, we are the same in wanting to better our lives in the journey for a more peaceful and downgraded lessened degree of pain. I feel for everyone who is trying to really dial down into the minute details of their existence to escape their problems surrounding chronic pain. I find strength in reading about others' journeys and what they have tried, no matter what it is and see if I can learn their techniques, trials and errors, and possibly integrate it into my own for experimentation.

A post I read earlier spoke of Requip and I'm very interested to know where to get it, what it is, and how it works. I have CRPS and have had it for over 20 years. Seeking a solution constantly and willing to take my treatment into my own hands because there is no cure. There are trials of what treatment could be but I am old school and slightly jaded at what is available.

Edit: 9:49am - Googled Requip. Doesn't apply to me but nonetheless appreciate the sharing of knowledge. Hope everyone has a decent weekend.

REPLY
@jakedduck1

@pamelaz
What seizure med/s are you taking?
Jake

Jump to this post

Keppra and Clonazepam and Cymbalta

REPLY
@frattmaa

It’s Alpha Lipoic Acid. It’s from a vitamin store. It’s suppose to help but it makes me vomit.

Jump to this post

I think you could use fish oil instead of ALA.

REPLY
@njed

To pamelaz - ALA - Alpha Lipoic Acid. Neuro doc at University of PA suggested it, I find it helps. I recently ordered on Amazon R-ALA and I think it helps a little more with improved feeling in feet. What is unfortunate is that the only way I would know if it were now not helping would be to discontinue which I don't want to do. By the way, I'm also on seizure control med. Ed

Jump to this post

How bad is your neuropathy? Mine is horrible.

REPLY

Hi I don't know if this would help anyone out there but I tried Alpha lipoic acid for my neuropathy and found it stopped the pain in my feet. I think taking thymine with it is good as Lipoic acid can deplete it out of the body. You can do your own research on this of course but I'm just saying it worked for me. Might help someone out there which is why I mentioned it.

REPLY
@pamelaz

How bad is your neuropathy? Mine is horrible.

Jump to this post

pamelaz - my neuropathy is moderate to severe - all numbness and poor balance with no pain, I have axonal PN and I think the R-ALA has slightly helped with some minor increased feeling. The "tight sock" feeling is constant, and little can help.

REPLY
@njed

To pamelaz - ALA - Alpha Lipoic Acid. Neuro doc at University of PA suggested it, I find it helps. I recently ordered on Amazon R-ALA and I think it helps a little more with improved feeling in feet. What is unfortunate is that the only way I would know if it were now not helping would be to discontinue which I don't want to do. By the way, I'm also on seizure control med. Ed

Jump to this post

I to have used successfully a combination of R-ALA, B-complex vitamins especially B-12 and essential oils. I know it works because I tried to stop it and the pain came back big time! Also try compression socks or open toe sleeves. They seem to help as well.

REPLY
@alfer

I to have used successfully a combination of R-ALA, B-complex vitamins especially B-12 and essential oils. I know it works because I tried to stop it and the pain came back big time! Also try compression socks or open toe sleeves. They seem to help as well.

Jump to this post

What essential oils work for you b
I take alpha lipoic acid 600 mg high potency b vitamins 800 mg if magnesium.

I would try essential oils.

Thanks

I

REPLY
Please sign in or register to post a reply.