Small Fiber Neuropathy:supplements?
 

;) 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

Gabapentin--
 

--is an anti-seizure medication that acts on the level of the spinal cord to mitigate the propagation of erroneous nerve impulses such as would be produced from damaged nerves; while it may help relieve symptoms it is not going to promote healing of the nerve tissue.

Actual healing comes from proper levels of the nutrients that the body needs to create such tissue. There are many that might prove helpful, but most of us start with Vitamin B12, Vitamin D, essential fatty acids (fish oil, flax oil, and the like) and minerals such as magnesium.

See the podcasts here, several regarding supplements:
http://www.beatingneuropathy.com/

I think the one on magnesium and the one on alpha-lipoic acid and acetyl-l-carnitine are very important.

Also there is an image here titled Nutrients for Neuropathy that I copied from a book I had (let me know if you can't get to these):
https://sites.google.com/site/basicpoke/Home/neuropathy

Personally, alpha-lipoic acid and evening primrose oil help with my pain. Magnesium is a good candidate as well--magnesium citrate for example.

Ron

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.

Supplements: getting organized what works?
 

Thank you guys:)!

Hearing from you guys is great.Question: how do you organize the information you get re what might work, what is working, what might be helpful later on?
I may be allergic to gabpentin and am trying to lower the dosage.the last few days after surgery were so hard - everything hurt - and I broke out in itchy hives. Apprently some people lose theri allergic symptoms if they continue taking the drug. So many sources claim that gabapentin has fewer side effects than the other drugs...anyway once my life seems more under control I will read up some more and maybe start with something easy. (It is so boring to take pills...without seeing results for many weeks or months?)Thanks and ideas appreciated.:winky:elaine 55

I just make notes in a Word document, see attachment. I ideally would make a note when I change something I'm taking, or just make a note of my condition periodically, and noting anything else significant that's going on.

BTW, I would no longer recommend fish oil or fish for getting Omega-3 fats. Use a plant product like ground flaxseed.
Ron

SFN & Supplements
 

[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

Hi Joe
Glad to hear your feeling better after using R lipoic Acid and benfotiamine. What kind of neuropathy do you have. What are your symptoms? I sort of gave up on OTC meds too. Do you have Diabetes? Is that why the meds (Supplements) helped you?
How much R Lipoic Acid and B1(Benf) do you take? I tryed lower doses of the R Lipic Acid for my burning skin and feet from SFN ,100 mgs. /day and 150 mgs. Benf for several mos. I didn't get much relief. Were you taking higher doses? (btw I also take 325 lyrica/day, doesnt seem to help much ). :(
Thanks in advance. Any input or suggestions are appreciated.
Marie

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.

And im not a diabetic, just idopatic

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

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

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

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?

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

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).

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

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.

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?

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.

[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... :(

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

Sfn
 

[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!

Marie, I did 150 mg for 2 months with no relief and moderate sideeffects, then moved up to 300 side effects increased right away. Held on for 2mo. thinking I have to give this time. I am off Lyrica completely, not going to sugar coat my withdrawl, as it was hell. No im not diabetic, but I have a thyroid condition, because of having a laryngectomy, have to have it checked often and it is always in the high end of hypothyroid range, so that may very well cause some of my SFN. Trying to get thyroid help is as bad as getting help for idiopathic SFN. Good luck just keep trying, hang tough, try any port in a storm, what is there to lose by trying.

Hi all,

Just wanted to comment on the struggle with withdrawal symptoms. Many of the drugs being prescribed for neuropathic pain come with that charming little bonus. I was personally on a prescription of methadone for peripheral neuropathy. My wife had central nervous system issues and had a terrible time coming off of gabapentin, which she was on for 10 years. Unfortunately for her, it wasn't until after that experience that she came across "The Road Back"

Fast forward a few years, she was put on a prescription of amytriptyline and this time, when going off of it, she was armed with the knowledge of how to do it. "The Road Back" helped her alleviate the withdrawal symptoms and the same can be said for me now that I'm going off methadone (currently at only 2mg/day). The withdrawal for methadone has not been particularly difficult for me, which speaks volumes about how well this works.

For anyone reading this who is either about to go off their meds or already has done so, I would definitely recommend you do not do this cold turkey.

:)

per. nueropathy
 

has anyone tried nueropathy clinics for foot pain thanks. i have trid just about everything. ajsam

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