NeuroTalk Support Groups - Small Fiber Neuropathy:supplements?

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- PN Tips, Resources, Supplements & Other Treatments (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/)

- - Small Fiber Neuropathy:supplements? (https://www.neurotalk.org/pn-tips-resources-supplements-and-other-treatments/196301-fiber-neuropathy-supplements.html)

Electron

03-01-2014 03:55 PM

Quote:

Originally Posted by Marie33 (Post 1054309)

Hi Joe
Thank you for responding. Do you have Idiopathic SfN? Its amazing that you are getting relief with only the R lipoic Acid and Benfotamine. Do you take any other type meds for your pain? I have SFN , over two years it has progressed to my arms, hands, mouth and torso. They called it length-dependent (started in my calves & feet) but I have it widespread now. I take 325 mgs Lyrica, I tolerate it ok but I still have so much pain. I get mostly tingling, buzzing, tightening, lancing pain in my arms, legs and feet. Some-days my skin burns all over including my face and lips. This is a horrible , miserable disease to have. The lyrica does not help as much as it should. How much were you taking and and how long did it take you too withdraw? Withdrawal scares me so much. What kindof Neuropathy do you have and what else do you take for your pain? Do you have the same symptoms I have. Sorry for all the questions. Thanks
Marie

A few years ago I began to have sharp pains, maybe what you call 'lancing', in my hands and sometimes feet, and was getting worse. I have found that eating a whole foods plant based diet, exercising, and managing my stress, had made them go away. Unfortunately my aching-type pains have not gone away. I generally avoid processed foods, but some snacks are a weakness for me. This type of diet, avoiding animal products and eating plenty of vegetables & fruits, does so many wonderful things in our bodies. Several doctors have shown in scientific studies, published in peer-reviewed medical journals, that this type of lifestyle reverses disease. I would like to give this information to every new member that posts here, but that seems silly. Give it a try. When you go grocery shopping, spend 90% of your time on the produce aisle.
Ron

joecarver

03-06-2014 08:42 PM

Marie, it took me 6weeks to withdraw off Lyrica, but it was still worth a try, it just took me too long to realize how bad my side effects were. I have idiopathic neuropathy. I already was on an antidepressant , brought on by a bad time with 3 different cancers at once, Wellbutrin, I still have pain but reduced enough that I can do ok, not wanting to do more meds, Dr says only 2 more to try and steroids. THe ones left have possible heavy side effects, so for now grit my teeth and sometimes take a Xanax to calm down. Good luck

debra lynn

03-07-2014 01:31 PM

Thanks Glenntaj, I am a newly dx SFN last week and new member to this site. I would appreciate any info you can help me with so I can get better! I don't care how long it takes, I want to make a full recovery! Mahalo

debra lynn

03-07-2014 01:36 PM

Thanks electron for your suggestions. Is evening prime rose oil a topical you apply to painful areas? I just ordered alpha lipoic acid from iherb.com. Any other suggestions would be helpful. I am new dx with SFN. and by the way, what is a podcast? Is it something i can get on my computer?

debra lynn

03-07-2014 01:43 PM

Aloha Joecarver, How is r lipoic acid different from alpha lipoic acid? I just ordered alpha lipoic acid and benfotiamine on iherb.com. should i have gotten r lipoic acid? I started gabapentin 2 or 3 weeks ago and feel slightly better, but i don't know if its that or cutting sugar from my diet I am newly diagnosed and would appreciate any advise. thanks, Debbie

glenntaj

03-08-2014 07:06 AM

You can use either--

--R lipoic or alpha lipoic acid; the latter is simply a refinement that has come along fairly recently that allows for somewhat smalelr dosing.

Without getting into too much biochemistry, many molecules in the body, and many nutrient molecules, have structures that can be described as "right-handed" or "left-handed" depending on how the bonds among the atoms are configured (the angles at which they join). Alpha lipoic acid consists of both configurations of alpha lipoic molecules, but it turns out our bodies can only use the right-handed ones, so R-lipoic was developed to consist of only right-handed lipoic molecules.

What this does is enable a given dose of R-lipoic to have a much greater percentage of usable molecules, such that one can take a much smaller dose to get a similar effect to alpha-lipoic. Often, a 6:1 to 10:1 ration is cited; one can take 60-100mg/day of R-lipoic to get a similar effect to 600mg/day of alpha lipoic, which is a common daily dosing for that. Since some people report reflux with higher doses of lipoic--it is, after all an acid--being able to take a smaller dosage can be helpful (as can taking the supplement with food).

peralta

07-22-2014 08:40 AM

Quote:

Originally Posted by marie33 (Post 1054309)

hi joe
thank you for responding. Do you have idiopathic sfn? Its amazing that you are getting relief with only the r lipoic acid and benfotamine. Do you take any other type meds for your pain? I have sfn , over two years it has progressed to my arms, hands, mouth and torso. They called it length-dependent (started in my calves & feet) but i have it widespread now. I take 325 mgs lyrica, i tolerate it ok but i still have so much pain. I get mostly tingling, buzzing, tightening, lancing pain in my arms, legs and feet. Some-days my skin burns all over including my face and lips. This is a horrible , miserable disease to have. The lyrica does not help as much as it should. How much were you taking and and how long did it take you too withdraw? Withdrawal scares me so much. What kindof neuropathy do you have and what else do you take for your pain? Do you have the same symptoms i have. Sorry for all the questions. Thanks
marie

600 mg of alpha lipoic acid and 1000 mg of acetyl l carnitine are recommended together. Supported by the national institute of health.

peralta

07-22-2014 08:44 AM

Quote:

Originally Posted by Elaine55 (Post 1024940)

;) Hi Guys!

I am so glad there is a place here with resources re treating peripheral neuropathy.Wednesday afternoon oral surgery took place to reduce the pain caused by a dental implant (titanium screw) which was so poorly placed in the jawbone that it actually injured sensitive tissue. Now I want to try whatever supplements or treatments which may enhance recovery from small fiber neuropathy.Since I have many allergies, I need to start slow and use caution.
Three different neurologists have agreed that Gabapentin will help.However I am looking for information/studies, others' experiences re the use of Gabapentin in promoting healing of the damaged small fibers.What are the benefits of long-term use of Gabapentin? Does the daily use of the drug help the nervous system recover? Can it hinder healing? My understanding is that neuropathy happens when the nervous system is out of whack due to prolonged exposure to extreme noxious stimuli.So I am looking into whatever supplements or therapy that can assist the whole nervous system in regaining its normal, healthy, pre-injury balance.I guess I am looking for guidance re a list of supplements that have proven helpful. Has anyone researched current studies re therapy (meditation, hypnosis,yoga,etc) that has helped in recovery?Spa therapy, a change of climate??Thanks...Elaine55:D

Most medications as prescribed can be fatal or cause serious side-effects or complications. Any natural option is preferred, and there is no magic pill. The Risk vs Benefit concept, as doctors call it, is rarely a good way forward.

Marie33

07-22-2014 02:12 PM

Sfn

[QUOTE=debra lynn,Thanks Glenntaj, I am a newly dx SFN last week and new member to this site. I would appreciate any info you can help me with so I can get better! I don't care how long it takes, I want to make a full recovery!

Hi Debra lynn, welcome to the forum. I also suffer from SFN. Do you know the cause of your SFN? Mine is Idiopathic. I had a zillionn blood tests, 2 mri's of the brain and spine. 3 Emg/NCS to rule out large fiber neuropathy. A skin biopsy done in 2012 confirmed I have SFN. I take 350 mgs of Lyrica and 50 mgs Tramadol for flare ups (which is almost every day). They do not help with my pain.
I also want to get better! Im still waiting "to make a full recovery" but I'm starting to think that wont happen. Do you know whats causing your SFN? I noticed your post was from a couple of mos now, did you find any supplements or meds that help you? I want to try R lipoic Acid again, but I think It works best for Diabetic Neuropathy. What are your thought and how are you feeling?

Marie33

07-22-2014 02:23 PM

ALA & Acetyl L Carnitine

[QUOTE=peralta 600 mg of alpha lipoic acid and 1000 mg of acetyl l carnitine are recommended together. Supported by the national institute of health

Hi Peralta
I started taking 100 mgs of R lipoic Acid, I hear its just as good , maybe better. I took it for a few mos, did not notice a diff, I stopped bc it was very stimulating. I also can not tolerate 1000 mgs of A L Carnitine. That seems like a very high dose. I heard a few mos ago that ALC was harmful to the body. I do not know how true this is. Do you still take that high dose of ALC. Are you still doing well with just these two supplements. You didn't mention what kind of Neuropathy you have. Would you mind telling us what kind of pain you have?
Thank you in advance for any advice or suggestions.

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