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Old 07-29-2013, 10:29 AM #1
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Originally Posted by groucho View Post
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.
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Only the (R)-(+)-enantiomer exists in nature and is an essential cofactor of four mitochondrial enzyme complexes.
http://en.wikipedia.org/wiki/Lipoic_acid
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.

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Old 07-29-2013, 11:40 AM #2
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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.
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Old 07-29-2013, 03:47 PM #3
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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?

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Old 07-29-2013, 04:46 PM #4
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I agree with you, completely. When I look back on what I wrote, I can see why you misunderstood me. I told my Neuro that I was taking the ALA. I thought it was helpful to some extent, but still had pins & needles (I get some still, but not so bad) & other pains. This is when he mentioned it doesn't seem to help many, so he didn't recommend it to his patients. He asked me if I still took it, at my last appt.

The discomfort has worn me down. I tried the drugs for help, for which they have, to an extent. As I told my Neuro, the folded sock pain is the worst, like walking on a string of cut glass behind my toes, which the drugs only killed temporarily. So that brings me back to the Podiatrist and the metatarsal pads. I can pretty much do the experimenting on placement, without paying for office calls. Incidentally, my trying these new pads, and finding how much better these worked, than the old ones, was a "good feeling", pun intended. That's also why I offered my experience with it on the forum. I wish I could find other natural stuff that would make things tolerable for me, but I'll take what I can get. I wouldn't hesitate to taper down or completely off the Nortriptyline (at a safe rate) with or without my Dr's consent.

I talked with my Neuro about all the folks I've read about on NeuroTalk that are on a handful of different drugs, and aren't able to get relief. He confided in me that, that as a Dr., he was frustrated that many of his patients aren't able to get the relief that he wished he could get them.

And, yes, the next drugs likely in line, Lyrica and Tramedol, are tough to get off of, once you start them, he agreed. I told him I felt fortunate to get partial relief, and get around as well as I am. My pain is mainly when I walk & seldom have anything that would bother me at night, other that an occasional stabbing or cramping. I haven't given up on natural remedies (my GP likes them), but finding one that work for me gets discouraging. (Extra B12 & 6 didn't do a thing for me, but I'm a believer in B1, so I continue to take along with folic acid & a good multivitamin) The fact I learned about the ALA and vitamin E, which is somewhat helpful, keeps me going, on that end.

While I read the omega 3 being mentioned here, I found more stuff on the web about it but it doesn't seem to be recommended a whole lot, but I hate seafood, so I'm sure I'm lacking. LOL How's that for a reason to try it?
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Old 07-30-2013, 12:09 AM #5
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As I told my Neuro, the folded sock pain is the worst, like walking on a string of cut glass behind my toes, which the drugs only killed temporarily.
Sorry if you've mentioned this before (and I either forgot or missed it) but how long have you had this cut glass FSS? I ask because I've noticed that this condition (PN) has gone through phases with me. FSS was one of my first symptoms (though without pain) and I don't feel it at all anymore except during flares (like the day after I have a slice of pizza ). IIRC, my FSS took ~a year to resolve.

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I talked with my Neuro about all the folks I've read about on NeuroTalk that are on a handful of different drugs, and aren't able to get relief. He confided in me that, that as a Dr., he was frustrated that many of his patients aren't able to get the relief that he wished he could get them.
I've heard that myself. Sometimes there's even more to it. I've posted this before, but it explains some things.

A Letter to Patients With Chronic Disease

In looking for the above link, I also came across this one, which I'd forgotten about...

Quote:
From: What Doctors Don't Know About Pain
Giving Chronic Pain a Medical Platform of Its Own


Chronic pain often goes untreated because most doctors haven’t been trained to understand it. And it is isolating: Family members and friends may lose patience with the constant complaints of pain sufferers. Doctors tend to throw up their hands, referring patients for psychotherapy or dismissing them as drug seekers trying to get opioids.

“Most people with chronic pain are still being treated as if pain is a symptom of an underlying problem,” said Melanie Thernstrom, a chronic pain sufferer from Vancouver, Wash., who wrote “The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing and the Science of Suffering” (Farrar, Straus & Giroux, 2010) and was a patient representative on the committee.

“If the doctor can’t figure out what the underlying problem is,” she went on, “then the pain is not treated, it’s dismissed and the patient falls down the rabbit hole.”
Quote:
While I read the omega 3 being mentioned here, I found more stuff on the web about it but it doesn't seem to be recommended a whole lot, but I hate seafood, so I'm sure I'm lacking. LOL How's that for a reason to try it?
Did you see this one?

Uncovering a Healthier Remedy for Chronic Pain

BTW -- are you taking a good antioxidant or 2 or 3?

Doc
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Old 07-30-2013, 05:24 AM #6
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I may have told you previously about the cheap chinese slippers that I attribute the original cause of my foot problems. I wore them a lot & going up & down stairs (I weigh 230#) I think with the poor padding I may have caused it. I know my feet were pretty painful by evening, but didn't really associate it. I also discovered since wearing the NB shoes (which allow my feet to spread out), that the little toes, particularly on the right foot, are kind of tucking themselves under the 4th toe, if you can understand what I'm getting at.

That makes me guess that my old athletic shoes were crowding my feet (regular width) & making me associate the pain with Mortons Neuroma & perhaps causing some of the pain. I really never noticed it before, and I went to the Podiatrist in the AM, so maybe it wasn't "hiding" early in the day. Anyway, the metatarsal pads I discovered seem to help. It may take time to undo what's been done. I'm sticking a chunk of foam between the 2 outside toes on my right foot, during the day to get the little toe out of the habit of tucking under.

The cut glass feeling has been with me since it started over 2 years ago. It doesn't feel that way initially, but as I use my feet, the irritation grows, & cut glass is about the only description that fits, although my Navy buddy has the FSS, which he claims doesn't bother him, but has also mentioned that at times it felt like he was walking on broken glass. It's hard to convey exactly what one is experiencing. Soft foam insoles (including memory foam), aggravate the feeling, as there is always the mild pressure on the area, which is at the base of my toes.

Aniti-oxidents? ALA is one I continue to take. I just started the natural vitamin E a couple of months ago. That's about it, other than my "Centrum Silver" equivalent, which contains C & perhaps something else.

BTW: Didn't you tell me some time back that you also took 10mg daily of Nortryptiline?

Last edited by groucho; 07-30-2013 at 07:30 AM. Reason: Afterthought
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Old 07-30-2013, 09:20 AM #7
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I know about feet & toes; -- worn E-EEE since I was a kid.

I thought I had read that there was some question about the antioxidant value of ALA, but I cannot find the mention, so nevermind. FWIW, NAC is another good one one I take (and ester c, e).

Not nori - ami -- at bedtime, to help sleep through the pain. Knocks me out pretty quick even when I'm not sleepy.

Doc
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