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-   -   Burning all over (https://www.neurotalk.org/peripheral-neuropathy/208046-burning.html)

bckay1 08-12-2014 09:32 PM

Burning all over
 
I am burning all over. It starts in my mouth and tongue. Travels down my torso and goes into my crotch. I am on a total of 600 gabapentin and have no idea if it is helping. I burn everyday starting about 1 or 2 pm.
The only help is using sublingual Ambian which knocks me out. I have been on everything you can think of and all I got were side effects.

My neurologist says there is no cure for neuropathy. I am borderline diabetic not taking meds

Is anyone getting help from gabapentin?
Carol

Dr. Smith 08-13-2014 12:24 AM

Hi Carol,

I test negative for diabetes, but my body (PN) behaves as if I were. R-Lipoic Acid (RLA) stopped my burning (feet & lower legs) within a couple days. This is unusually quick for this supplement; it can take up to a month or two to work (if it does). RLA is also helpful for Burning Mouth Syndrome (BMS).

r lipoic acid for peripheral neuropathy

r lipoic acid for burning mouth syndrome

If it can't hurt to try it, then it can't hurt to try it.

Doc

Sallysblooms 08-13-2014 11:09 AM

What supplements do you take? Do you have a doctor that would understand how to help with nutrition and supplements? Integrative MD's?


If your doctor can't help, keep looking for another.

bckay1 08-13-2014 04:58 PM

Burning pain
 
Quote:

Originally Posted by Sallysblooms (Post 1089059)
What supplements do you take? Do you have a doctor that would understand how to help with nutrition and supplements? Integrative MD's?


If your doctor can't help, keep looking for another.

I tried alpha lipoid acid for months. It was just another pill to swallow and I didn't feel any different. I'm on 300 gabapentin 2x a day.

Jon_sparky 08-13-2014 08:16 PM

My Rheumy is having me try 1500 mg ALA a day, so far no change in the PN pain. You have to swallow a lot more pills when you are going the nutritional approach...

beatle 08-13-2014 10:42 PM

Quote:

Originally Posted by Jon_sparky (Post 1089168)
You have to swallow a lot more pills when you are going the nutritional approach...

Ain't that the truth! :eek:

uglogirl 08-13-2014 10:43 PM

Quote:

Originally Posted by bckay1 (Post 1088961)
I am burning all over. It starts in my mouth and tongue. Travels down my torso and goes into my crotch. I am on a total of 600 gabapentin and have no idea if it is helping. I burn everyday starting about 1 or 2 pm.
The only help is using sublingual Ambian which knocks me out. I have been on everything you can think of and all I got were side effects.

My neurologist says there is no cure for neuropathy. I am borderline diabetic not taking meds

Is anyone getting help from gabapentin?
Carol

Hi Carol,
How long have you had the burning sensation. I was diagnosed in Oct 2013 I am a diabetic 11 and have a team of doctors. I take Lyrica twice a day, have a compound cream, and compound vitamin B's that were prescribed from my pain management Doctor. I also take the Alpha Lipoic Acid and other vitamins.

It is a misery but I found what cause it to flair the better off I was and am.

As long as my sugar is between 80 and 100 I hardly feel anything. I just spent 2 weeks almost with the exception of small discomfort pain free.

This was until I was going through a very stressful period and had an Apple maple Mega Muffin. Now I have the burning, legs ache, feet numb the whole nine yards. For me it's staying away from carbs that makes a hugh difference.

Neuropathy may a chronic disease but you don't have to suffer every day with it.

Just get the right Team of Doctors.

uglogirl 08-13-2014 10:47 PM

Quote:

Originally Posted by uglogirl (Post 1089188)
Hi Carol,
How long have you had the burning sensation. I was diagnosed in Oct 2013 I am a diabetic 11 and have a team of doctors. I take Lyrica twice a day, have a compound cream, and compound vitamin B's that were prescribed from my pain management Doctor. I also take the Alpha Lipoic Acid and other vitamins.

It is a misery but I found what cause it to flair the better off I was and am.

As long as my sugar is between 80 and 100 I hardly feel anything. I just spent 2 weeks almost with the exception of small discomfort pain free.

This was until I was going through a very stressful period and had an Apple maple Mega Muffin. Now I have the burning, legs ache, feet numb the whole nine yards. For me it's staying away from carbs that makes a hugh difference.

Neuropathy may a chronic disease but you don't have to suffer every day with it.

Just get the right Team of Doctors.

Just that term of saying there is no cure for Neuropathy would make me forget that Doctor. It can be controlled. Gabapentin did not work for me I am on Lyrica but its Lyrica and a regime that is followed.

Dr. Smith 08-13-2014 11:46 PM

Quote:

Originally Posted by bckay1 (Post 1089128)
I tried alpha lipoid acid for months. It was just another pill to swallow and I didn't feel any different.

Quote:

Originally Posted by Jon_sparky (Post 1089168)
My Rheumy is having me try 1500 mg ALA a day, so far no change in the PN pain. You have to swallow a lot more pills when you are going the nutritional approach...

Ok, I didn't say ALA—I said RLA, and the stabilized form at that, which is better absorbed/assimilated than ALA.

What's the difference?

rla vs ala

ALA can go bad; it's much more difficult for stabilized RLA to decompose/go bad.

100 mg. of stabilized RLA is equivalent to ~600 mg of ALA.

It's also a cuss of a good antioxidant. ;)

B5 (pantothenic acid) can further enhance the effects of ALA or RLA.
A new combination for treating polyneuropathy.

While RLA stopped the burning pain from my PN, B5 reduced the rude jabs & zaps.

But perhaps most importantly, RLA has worked for some where ALA has not, just as pregabalin has worked (better) for some where gabapentin has not (or has stopped).

More pills to take/try? Tell me about it. :rolleyes: I try to try something new every few months to see if I can find something else that will help. One at a time so I know what works & what doesn't (and so I don't go broke all at once!) :rolleyes: Some things help—most don't, so I drop those and try another.

If you've tried stabilized RLA and it hasn't worked, I'm sorry. If you've only tried ALA, I think it's still worth a try—it can't hurt, there's nothing to lose, and possibly something to gain.

Doc

bckay1 08-15-2014 04:26 PM

Burning all over
 
I was diagnosed with idiopathic neuropathy. I have gone thru lyrica ,gabapentin and am now trying gralise as each pill I swallow triggers my burning. I have been to Mayo. They had no clue. This has been going on for over 6 years. I now start burning at 9 am. The only thing that helps is sublingual Ambian which puts me to sleep. Sometimes when I wake up the burning is gone. When I wake up in the middle of the night I am fine until early am. Go figure

mrsD 08-15-2014 06:12 PM

You may be reacting to your toothpaste.

Triclosan in many pastes and soaps is
Highly controversial right now. It may be
Removed soon. If you Google it you
Can read more. There are studies about
It on PubMed as causing mouth irritation
and more.

Dr. Smith 08-15-2014 10:21 PM

Quote:

Originally Posted by bckay1 (Post 1089616)
I now start burning at 9 am. .... Sometimes when I wake up the burning is gone. When I wake up in the middle of the night I am fine until early am. Go figure

I think CAPTAIN OBVIOUS might say something like, "That's a clue! ....And a starting point." Unfortunately, the captain isn't always very astute at deduction or directions... :o :Doh:

What happens if you fast in the morning? Does the burning still start at 9 am?

Apologies if you've been down this road, but I'm a little hypersensitive to the possibilities of triggers right now due to some things & discoveries my DW is going through.

Doc

Idiopathic PN 08-22-2014 09:15 PM

Quote:

Originally Posted by bckay1 (Post 1089128)
I tried alpha lipoid acid for months. It was just another pill to swallow and I didn't feel any different. I'm on 300 gabapentin 2x a day.

i am on Gabapentin too. The therapeutic dosage should be at least 1800mg a day. Even with this dosage, I dont get total relief but at least some. If and whn you decide to up your dosage, dont do it abruptly. It has to be adjusted gradually....please consult your doctor.

Dr. Smith 08-23-2014 05:46 AM

Quote:

Originally Posted by Idiopathic PN (Post 1091155)
i am on Gabapentin too. The therapeutic dosage should be at least 1800mg a day.

Quote:

The usual effective total daily dose [of gabapentin] is 900-3600 mg, administered in three divided doses per day. Higher doses may be needed. Titration should proceed more slowly in elderly patients.
http://www.eperc.mcw.edu/EPERC/FastF...dex/ff_049.htm
Whatever it is, I think the recommended dosage for gabapentin (and some other things) is/may be too high. The few times I took gabapentin for my PN, 100 mg. was enough to stop the burning for up to 24 hrs. Back when I tried it for chronic pain I couldn't complete the upward taper—it fried my brain without providing any therapeutic effect (and there's some question that the damage was permanent).

I realize I may be the outlier, but I learned from those experiences and others to err on the side of caution when titrating medications. These recommended therapeutic dosages are determined by studies (Phase II, IIRC) done by Big Pharma (whose purpose is to sell more drugs—not less).

My DW also does fine on lower doses of gabapentin—usually 100 mg. (for fibromyalgia and/or cervical stenosis) and rarely (couple/few time a year) up to 300 mg. with bad flares. Since being on an elimination diet, she's taken almost none, and has been able to reduce other medications to a trickle as well...

We're all different, and 1800 mg may be the magic number for many/most—I just think it makes more sense to start low and stop when efficacy is acheived rather than assuming everyone is the same and scarfing down fistfuls of nostrums.... :Doh: :D

Doc

bckay1 08-23-2014 11:55 AM

Quote:

Originally Posted by Dr. Smith (Post 1091196)
Whatever it is, I think the recommended dosage for gabapentin (and some other things) is/may be too high. The few times I took gabapentin for my PN, 100 mg. was enough to stop the burning for up to 24 hrs. Back when I tried it for chronic pain I couldn't complete the upward taper—it fried my brain without providing any therapeutic effect (and there's some question that the damage was permanent).

I realize I may be the outlier, but I learned from those experiences and others to err on the side of caution when titrating medications. These recommended therapeutic dosages are determined by studies (Phase II, IIRC) done by Big Pharma (whose purpose is to sell more drugs—not less).

My DW also does fine on lower doses of gabapentin—usually 100 mg. (for fibromyalgia and/or cervical stenosis) and rarely (couple/few time a year) up to 300 mg. with bad flares. Since being on an elimination diet, she's taken almost none, and has been able to reduce other medications to a trickle as well...

We're all different, and 1800 mg may be the magic number for many/most—I just think it makes more sense to start low and stop when efficacy is acheived rather than assuming everyone is the same and scarfing down fistfuls of nostrums.... :Doh: :D

Doc

I had been on a total of 600 gabapentin and couldn't tolerate any more. I don't think it even helped but is read about gralise 600ER and asked my neurologist if I could try it. It eased my burning to a tolerable level. I asked her if I could add the 300 ER gralise. She told me to take one of them in the a.m. The other at dinner. I have started the 600 at breakfast and will see if this helps the burning which is at it's worst in the mid afternoon. The slow release of this May keep the gabapentin in my system. Will let you know how this works.

Joano 08-23-2014 05:18 PM

Benfotiamine, a form of Vitamin B-1, helped me the most. It may be hard to find in local health food shops, but readily available on line--iHerb has it. When I wake up in the middle of the night with burning legs, lotion with methol helps the most to get back to sleep. (Cold takes precedence over hot.)


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