Small Fiber Neuropathy:supplements?

joecarver · 02-27-2014, 07:56 PM

And im not a diabetic, just idopatic

Marie33 · 03-01-2014, 01:04 PM

Quote:

Originally Posted by joecarver

Marie I amtaking same amount of the supplements as you tried, 100mg r-lipolic and 150mg of benfotmine. My pained has decreased , but not gone , at a level that I can manage. I was on Lyrica, the last med I tried, had bad side effects and a hard time during withdrawel. Dr. had said some people it helps and some just cannot tolerate it, I was among latter group sadly.

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

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

--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).

Marie33 · 07-22-2014, 02:47 PM

[QUOTE=joecarver;1025580]after trying gabapentin no help, Lyrica terrible side effects, decided to try supplements. started with R- Lipolic acid and Benfotiamine which have greatly improved my pains, didn't eliminate them but made life much better. Was surprised as I thought using over the counter meds, was a bunch of B.S.
Joe,
I tried gabapentin and it gave me palpations. Im on 350mgs of Lyrica with some side effects, lightheadedness, etc but tolerable. Lyrica after 18 mos at this dose is not helping. What terrible SE did you get with the Lyrica? I tried RLA didnt see a diff. I still take 150 mgs Benfotiamine after 2 yrs and I dont see a diff in my pain.. Glad these supplements have greatly improved your pain!!
How much RLA and Benf. do you take a day? What kind of symptoms or pain has it been helping. I feel like I have tryed almost everything and nothing is helping me with my burning, tingling and buzzing. I have I-SFN...

joecarver · 07-24-2014, 03:22 PM

Marie I take 150 benfotiamine and 150 r-lipolic stabilized a day. On Lyrica I had periods of brain fog where I felt mentaly numb , periods of depression and sudden attacks of fatigue. I wanted it to work so badly I stayed on it too long and had a terrible time with withdrawl. I was told by neuros at Mayo Clinic it was SFN. When I asked my rhumotoligst about supplements he , said some people they seem to help, they aren't going to hurt you , so give them a try. I have reduced pain with them for sure. good luck

Marie33 · 07-24-2014, 11:20 PM

[QUOTE=joecarver;1084732]Marie I take 150 benfotiamine and 150 r-lipolic stabilized a day. On Lyrica I had periods of brain fog where I felt mentaly numb , periods of depression and sudden attacks of fatigue. I wanted it to work so badly I stayed on it too long and had a terrible time with withdrawl. I was told by neuros at Mayo Clinic it was SFN. When I asked my rhumotoligst about supplements he , said some people they seem to help, they aren't going to hurt you , so give them a try. I have reduced pain with them for sure. good luck

Joe, Thanks for your quick response! I really wanted lyrica to work too. I have been taking 350 mgs of lyrica for 18 mos now. I'm thinking of going off them bc they don't seem to be working. I guess I wont know unless I cut back. I know it will be a very slow taper. I am deathly afraid of the withdrawal symptoms. How long was "too long" for you. Are you off of Lyrica completely? You have SFN, do you take some kind of med for your pain? I take the same amount of Benfotiamine. 150 mgs of RLA would be to strong for me. Are you diabetic? I know these supplements help with Diabetic neuropathy. Mine is Idiopathic, came out of the blue, I am otherwise healthy..very painful and frustrating..mine was Dx by punch skin biopsy. Take care!

tarheel15 · 03-17-2015, 02:56 PM

Which type of Lipoic acid and Benfothiamine do you use? the ALA i tried gave me lots of stomach issues.

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?

peralta · 07-22-2014, 08:44 AM

Quote:

Originally Posted by Elaine55

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

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.

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