Thanks for the 411, Grouch.

FSS bothered me a lot for the first year or so -- it was the first symptom I recall manifesting. By the time the burning began, I had been to a podiatrist (no help at all -- just wrapped my feet in duct tape and told me to leave it on for a week... didn't do squat) and the neurology route that wrote me off with a scrip for gabby. Right about the time I broke down and took the first gabby, I also got ahold of some RLA, and within 48 hours the burning was gone. Since then I've tried other supplements as recommended here, but the only one that's made a difference for me I found on my own - pantothenic acid (B5). Over time, the shocks, cramps, and FSS have all lessened, but never gone completely. So I can pretty well attribute it to time, RLA, B5 or a combination of 2 or all of them.

Just my $.02

Doc

Doc:
Glad to see that you've been back, for awhile. Hope the "break" you took wasn't anything serious.

The Gaba worked for about 3 weeks, then would have to up my dose. When I hit 600mg - 4x daily, I felt I had enough. If I go above 40mg daily on the Nortriptyline, it's like I've ODed on caffeine. No fun, either. I don't think my feet felt any better at 50mg, but didn't stay on it (twice) long enough to know, maybe. Another fellow on here suggested natural vitamin E made his feet feel better in 2 or 3 weeks. After being on it for 2 weeks, I found my feet were no longer icy cold. Just kinda cool in the AM, to near regular body temperature later. That wasn't what he meant, and he never did tell me what "better" was for him, but if it helps my circulation, I would say (& my Neuro agrees) it's a good thing. I just added Omega 3 & am giving that a trial run, but will keep the B5 in the back of my mind. Don't like to try multiple new supplements at once. Hard telling what's helping.

Agree. Supplements can seem like a crapshoot sometimes. Everyone's different, and it takes time to find that combination of supplements that work for each of us. I'm really glad the RLA works for me though; gabby & Lyrica S/E are intolerable, and rob me of what's left of creative abilities.

Here's the blurb that put me on to B5:

Pantothenic Acid

I'm told I'm not diabetic (always test negative) but my PN responds as if I were. Go figure.

Doc

Thanks again. What dosage of B5 works for you? I've been taking ALA, and trying R-lipoic didn't seem to work for me.

If RLA didn't work for you, I don't see how ALA could, as only the RLA portion of ALA is useable.
Also, the study cited was for B5 with ALA, so if ALA/RLA don't work, I don't know that B5 would do any good either. But it wouldn't hurt to try it. I take 500 mg/day.

Doc

I'll give you the whole deal. When I started the ALA, I had the "stocking" feeling on my feet, or they felt swollen and they obviously were not. 600 mg of ALA seemed like it helped on again-off again, so I raised it to 900. I continue to take 900 mg (300x3) of ALA, which also helped slightly with discomfort. I've thought about trying to discontinue it, and see if the 40mg of Nortriptyline is enough to do it for me, but I haven't yet, as I had just "stocked up".

I'll try the omega 3 for about a month by itself, and perhaps add the B5 later. If I'm lucky enough, maybe I can tell my Neuro that nature has helped me. I don't know if I'd mentioned to you that my Neuro doesn't like to recommend ALA, as he believes too small a percentage benefits from it.

I got a similar story from my neuro, but I question their logic. I don't know the exact % of PN patients for whom RLA works (and I count my blessings that I am one of them). Gabapentin & Lyrica have been shown to help only about 30% of those who tried them, but they are prescription medications (vs. OTC supplements) and for many of those for whom they do work, they just stop working after a time. Worse yet, they are incredibly dependence producing (see threads here, and in medications & chronic pain forums).

In the spirit of Hippocrates, doesn't it make sense to still try the natural, non-dependence producing therapy before (IMO) the noxious ones that (virtually) enslave people to Big Pharma?

Doc