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.

@deluga

I'm so sorry to hear about that. I had burning pain and numbness for 20 years due to a misdiagnosis of gout. At last a rheumatologist tested me thoroughly and said I didn't have gout and had never had it and go see a neurologist. The neurologist put me on Alpha Lipoic Acid (ALA) and in 2 weeks I started to get relief. I now take Pure Encapsulations ALA but due to input from here, I will soon be switching to R-ALA. Good thing about ALA is that near are no side effects. Hope you get some relief.

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Can I ask what dose of Lipoic Acid you are taking? I have been on both Alpha Lipoic Acid and R Lipoic Acid and they don't seem to be doing anything. I take 2x caps a day of the Pure R-LIPOIC ACID 100mg.

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I have chemo induced, peripheral neuropathy. The doctor approved me for medical cannabis. They have an ointment or balm that helps a lot. It doesn’t last very long on my hands really helps my legs and feet.

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I have lumbar spinal neuropathy. Gabapentin & Duloxetine have provided some relief.

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@bettyg81pain

So glad you wrote this - I, too, use a cream and need to have the 5% ketamine added-everything else is pretty much the same - my primary doctor was not sure how much to have added so I can tell her 5% ketamine. I also take B vitamins trying to slow it down - have any of the THC or CBD's worked?

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This really sucks. There always seems to be a moving target. Sometimes rubbing a good quality cbd oil helps but not always. Thc is the same. So many different forms of neuropathy.!!! Vitamin B is a long shot but it should be tried. It doesn't seem, to matter, there is always pain. You can find something that helps for awhile, but it always seems to disapppoint. My experience is that you must accept pain and when it becomes overwhelming, you turn to things like lidocaine for a brief respite. This also fails after a while. I've tried all the drugs and all the herbs. Still continue to explore essential acids that sometime give me brief relief. I wish I could give you more concrete info. Just keep records of what you try and concentrations. Sooner or later you may find someth
ing that works. My experience as a long term survivor who at times wishes he wasn't.

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@rickhood

Can I ask what dose of Lipoic Acid you are taking? I have been on both Alpha Lipoic Acid and R Lipoic Acid and they don't seem to be doing anything. I take 2x caps a day of the Pure R-LIPOIC ACID 100mg.

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That seems like a very tiny amount. I take 1200 a day (and at one point was up to 2400) and I started getting results in 2 weeks.

Hope you improve.

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@rickhood

Can I ask what dose of Lipoic Acid you are taking? I have been on both Alpha Lipoic Acid and R Lipoic Acid and they don't seem to be doing anything. I take 2x caps a day of the Pure R-LIPOIC ACID 100mg.

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these only help if your body is having difficulty producing nitrous oxide. Generally people take upwards of 500-1000

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I find the supplement Palmitoylethanolamide (PEA) helps: https://www.iherb.com/blog/a-quick-guide-to-pea/872. I take it 4 times a day, morning, lunch, dinner, and bedtime. My neuropathy is inflammatory in nature. As always talk to your doctor before taking any supplements.

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@cher27

Thank you. I am on 1800mg of Gabapentin for my PN. I guess it helps. I am frustrated. I just developed a wicked case of Tinnitus in one ear, about 45 days ago. MRI tomorrow. I think the high pitched buzz is driving me a bit crazy too!

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Try Ring relief. I've been using it for 10 years. It will take a day for it to work. doesn't totally take it away but calms it down. I've noticed if I concentrate on something I don't notice it. Music helps. Never notice it when I sleep.

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@judee1948

I keep just try pushing through it because no one seems to get it. So glad I discovered this site because I have found someone who gets what I am going through. Hang in there "sister"

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Stay with us. I had no idea so many people had this problem.

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@snagydude

This really sucks. There always seems to be a moving target. Sometimes rubbing a good quality cbd oil helps but not always. Thc is the same. So many different forms of neuropathy.!!! Vitamin B is a long shot but it should be tried. It doesn't seem, to matter, there is always pain. You can find something that helps for awhile, but it always seems to disapppoint. My experience is that you must accept pain and when it becomes overwhelming, you turn to things like lidocaine for a brief respite. This also fails after a while. I've tried all the drugs and all the herbs. Still continue to explore essential acids that sometime give me brief relief. I wish I could give you more concrete info. Just keep records of what you try and concentrations. Sooner or later you may find someth
ing that works. My experience as a long term survivor who at times wishes he wasn't.

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Seems the B vitamins help the most for painful neuropathy, in order they are. B-6 #1, B-12 #2, B-1 #3. But there are different forms of each. Check Nerve Doctors on You Tube. Neuropathy Pain is like s ghost, the way it affects your body, it comes in many forms, from burning to stinging to pin pricking and on it goes. Mine caused by anti-biotics, chemotherapy and radiation.

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