Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-12-2007, 08:02 PM #1
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Default SYMPTOM MIGRATION: My Story

About ten years ago I began taking the antioxidant grape seed extract (GSE) in the hope that it would prevent, or at least delay the onset of symptom migration, and for ten years it appears to have done exactly what I hoped: I have not had any new RSD symptoms anywhere in my body.

Since some people never experience symptom migration this could just be my good luck, and if this is all I have to show that GSE actually works I might as well not say anything. There is more, however, and I hope that after reading the rest of this post you will decided its worth $10.00 a month to protect yourself from this awful complication.

There is scientific support for antioxidant protection from symptom migration, but that support is based on RSD as a disorder called ischemia-reperfusion injury (IRI), and NOT the result of nerve damage. During my nearly ten years at BrainTalk I wrote thousands of words explaining that nerves don’t do what RSD “experts” tell us they are doing. They really can’t.

After explaining why this can’t result from nerve damage I wrote about IRI and how it also begins with a physical trauma. I wrote about how IRI explains every sign and symptom of RSD, explaining exactly how it produces all three types of RSD pain; lower skin temperature; patchy osteoporosis; diminished hair and nail growth, and how it explains the one RSD sign the “experts” never talk about: Cyanosis.

I described the IRI process in detail, including the role of oxidants called oxygen free radicals (OFRs) in this disease. I said that physicians apply the topical antioxidant vitamin E to surgical wounds in order to prevent IRI from developing, and this is what led me to begin taking the oral antioxidant GSE.

In other words, I offered a scientifically sound rationale for delaying symptom migration that would only be valid if this really is an IRI. But I can’t prove RSD is IRI, so why should you pay any attention to this post?

Because of the story I’m about to tell you, the story of my experiences while taking, and then not taking GSE. I think its a compelling story and hope you agree.

As I said, I began taking GSE about ten years ago (a few months after the RSD spread from my left to my right foot), and have not experienced any new symptom migration; I have however, come close a couple times.

After taking 100mg of GSE every day for about two years, I noticed that about once a month the inside of my left wrist would turn bright pink and burn like a sunburn. I began to apply the topical antioxidant DMSO to the area three times a day, and after about three days the inflammation would subside.

I kept up this routine for more than a year and then got the bright idea that since the DMSO controlled the inflammation I could just use it a couple days a month and not have to spend any money on GSE. I stopped taking it and waited to see what would happen next.

I didn’t have to wait long: In just a few days both arms and both legs were bright pink and burned like a moderate sunburn. I realized the GSE had been doing a lot more than just protecting my wrist, and was scared to death that my now red, warm skin was about to turn into the cool skin and cyanosis of full-body RSD.

I began taking GSE again: 300mg daily now. I also smeared DMSO over my arms and legs five times a day. It took only two days for the inflammation to subside; I had been spared from a major disaster. If I had had any doubt that the GSE was worth the money, it was gone forever.

There is absolutely no explanation for the sudden onset of inflammation in both arms and both legs (exactly what happens in first stage RSD), except that the GSE had been preventing it. I had never had any such inflammation before RSD; have you?

RSD “experts” might say that the inflammation was a sort of reverse placebo effect: that I believed the GSE was helping and when I stopped taking it my mind caused the inflammation to begin. Maybe, but I’ll keep taking GSE anyway. Anyway, a “reverse placebo effect” can’t explain what happened next:

About five years ago I went into a very long emotional crisis; so severe that I decided my only answer was suicide. Not just suicide, however; I wanted to die in a very specific place, the place where I had proved to myself that I had the courage to die. Long story short: I could only drive about 150 miles a day and this place is more than 1800 miles away. I had to get the money to make the trip and plan it very carefully. All of this took time.

During this time I guess I forgot to take my GSE regularly. One morning I woke up and both arms and both legs were bright pink and burned. I had to drive 50 miles to buy DMSO, and of course began popping GSE like crazy. After a couple of days the inflammation subsided again.

I also realized that ending my life wasn’t my only option after all. I could have looked at the inflammation and decided I wasn’t gonna make it to Chiapas and just tucked a .22 under my chin, but instead I drove 50 miles to buy DMSO. That’s the sign of a man who wants to live.

Like I said, “reverse placebo effect” doesn’t fit this last scenario: I didn’t know I had forgotten to take the GSE, so its hard to imagine my mind tricking my body into becoming inflamed again.

That’s my story. If BT hadn’t crashed I could post all the stuff I wrote there, but nobody really read it there anyway. The bottom line is that when someone tells you a story like the one you just read, you need to give it some very serious thought.

I can’t guarantee that taking GSE will delay symptom migration. I can tell you that only one person who reported taking GSE later reported suffering symptom migration, while lots of people who don’t take it post about new symptoms all the time. I guess we can’t know for sure unless everyone here believes me and begins taking GSE. I know I’d like to know for sure.

Finally, as I wrote the line “...lots of people who don’t take it post about new symptoms all the time”, I realized that I have let a lot of people down. A lot of “newbies” never had a chance to read my story.

I guess everyone will have to get used to seeing this thread “bumped” a lot; like once a month…Vic
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Old 05-12-2007, 08:14 PM #2
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I got some of the GSE and am experimenting with it. My symptoms have been a little better the last few days and I don't want to complicate things with anything new.

I'm afraid it's about ready to spread into my heart so intend to stay on top of it.
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Old 05-12-2007, 09:37 PM #3
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Hi Vic,
I remember you from about 3 years ago on another board. I always enjoyed your posts. Something happened & I couldn't find that aboard again. Anyways, you convinced me to start taking GSE & I have been for over 3 years. I hate to report, but my RSD has spread from my hand to my legs. Good news is that, so far, I haven't had the severity that I originally had in my hand. Maybe, would have been worse had I not taken the GSE. I had recently wondered whether I should continue it or not, but now that I've heard another convincing story from you, I will.
Thanks,
Linmarie
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Old 05-12-2007, 09:56 PM #4
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Hi Vic,

Thanks for posting that. Must it be GSE? Wouldn't any heavy-duty antioxidant be just as good or do you think that grape seed extract specifically is what has made the difference with you?

all the best
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Old 05-13-2007, 10:09 AM #5
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Hi Vic,

Thanks for posting that. Must it be GSE? Wouldn't any heavy-duty antioxidant be just as good or do you think that grape seed extract specifically is what has made the difference with you?

all the best
I was wondering this myself, and was wondering if large doses of vitamin C wouldn't do the same thing? Or any other antioxidant?

Thanks!
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Old 05-13-2007, 02:33 PM #6
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Hi Vic!! I am new, I don't know why you would say you let a lot of newbies down?? Vic, I am so glad you posted this about the grapseed. I am going to give this a try. where do I get this?? on line? at my local herbal health store?? thanks, Vic! Love, Desi
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Old 05-16-2007, 06:16 PM #7
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Hi Vic,

Thanks for posting that. Must it be GSE? Wouldn't any heavy-duty antioxidant be just as good or do you think that grape seed extract specifically is what has made the difference with you?

all the best
Ho! Quoting myself here; but I'd really like an answer.

As I've said elsewhere, GSE here in HK is mucho expensivo, so I take as much antioxidants and free radical scavenger-carrying food and drink (tea) as I can. I assumed it would do the job in the same way...but since I know Vic isn't a GSE salesman yet pushes GSE so hard, I'm now wondering if he reckons there is something specific in GSE not found in anything else?

all the best.
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Old 05-18-2007, 12:18 PM #8
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Thanks for sharing your story with us newbies. The way I see it, I have everything to gain and nothing to lose by trying it. And, when you consider the horrid side effects from the meds they give us for this monster...why not give it a go...Thanks Jeannie
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Old 05-18-2007, 04:52 PM #9
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Hi everyone,

Sorry to take so long to reply but my social life has been so demanding, what with parties, bars and loose women chasing me...anyway, I'm here now.

Imahotep; I've done a fair amount of reading about antioxidants in general and GSE specifically and haven't found one report about adverse reactions, drug interactions or overdose, so don't think GSE will complicate anything.

Also, we see lots of commercials advertising everything from bottled water to hair dyes containing antioxidants; a lot of this antioxidant stuff is hype, reaching out to people who want to look 20 when they're 80 or have unlimited erections, but it does have real beneficial effects besides slowing symptom migration, so taking it daily will probably help in ways we will never learn.

Linmarie; I notice that I never spoke about my attitude about symptom migration, but the bottom line is that it scares the Hell out of me. I don't think I'd be willing to live with pain throughout my body; that I'd probably decide its too much for me.

When I suddenly developed inflammation in all four limbs, my response was immediate and massive: I jumped from 100mg to 300mg of GSE daily and smeared DMSO everywhere five times a day. The DMSO left me with flu-like symptoms, but I knew I would rather feel sick than have full body RSD. If that hadn't worked I would have increased the GSE even more and smeared DMSO ten times a day.

I would do whatever was necessary to stop what was happening to me, and I would begin just as soon as I noticed anything that even seems like new symptoms. The only weapons that I know of are antioxidants, so I would keep increasing dosages until I won or lost.

Artist; I think an I.V. antioxidant would probably be much better: our gut is loaded with OFRs and other reactive oxygens that help break down food molecules, so lots of the GSE is neutralized before they ever reach the body.

The problem is that no one has a clue about appropriate dosages or intervals, so a lot of experimenting would be necessary; experiments that will never be undertaken.

Liz (coachV) gave the most logical answer to your question. I started using GSE because it was what Wal-Mart sold. I read what I could about it and learned that the little information available reported it to be safe and effective so I kept buying it. Had Wal-Mart only sold pycnogonel, I would probably be pushing that.

It boils down to: If it works, don't fix it.

Shaman, a former BrainTalk Forum member, argued that the antioxidants in natural foods were enough to do the job, and I agree that they can help but once I was persuaded that antioxidants might delay symptom migration it seemed wisest to me to supplement what we normally eat. Since much of my diet consists of chocolate chip cookies and Hershey's Kisses, a supplement is probably best for me.

IHH; GSE is an antioxidant while vitamins C and E contain antioxidants. There was an article in Lancet describing how vitamin C prevented RSD in a study of wrist fractures, so there is support for this view. I didn't think much of the study design or their projected numbers, so I never cite it in my posts.

Anyway, I'm a bottom line kind of guy, and the bottom line for me is that I feel safer paying about $10.00 per month and being confident I'm doing all I can.

Desi; I get my GSE at General Nutrition Centers (GNC): a 100 count bottle of 300mg capsules is about $27.00, and thats as cheap as I've found anywhere. You have to buy a discount card ($15.00 per year) and can only buy it at this price during the first week of the month, but I can live with that.

BTW: I let a lot of people down because I took so long to write this thread. I know GSE helps but I kept it my secret.

used to be; my point exactly.

Liz; Of course your neuro, pain doc and family doc have different views; everybody seems to have a view. It would be nice if some doc would take the time to compare RSD symptoms with diseases that weren't discovered until after RSD. If anyone, besides me, did that, the answer would be obvious and we could talk about something else...Vic
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Old 05-21-2007, 08:01 AM #10
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IHH; GSE is an antioxidant while vitamins C and E contain antioxidants. There was an article in Lancet describing how vitamin C prevented RSD in a study of wrist fractures, so there is support for this view. I didn't think much of the study design or their projected numbers, so I never cite it in my posts.

Anyway, I'm a bottom line kind of guy, and the bottom line for me is that I feel safer paying about $10.00 per month and being confident I'm doing all I can.
How could they "prevent" RSD? How did they know that these patients would have gotten RSD?

I am not questioning you, Vicc, rather their study... er, it's confusing me, because I have no idea how they would've known that these patients would be the ones that would've developed RSD...

Maybe someone could explain that? Or their study?

Vicc, could you please give me the name of the study so that I can read it? Thanks.


I certainly understand your reasoning for using the GSE. Can you tell me if you know if it interacts with any drugs?

Speaking of herbs/ supplements interacting with drugs, does anyone know of a website or such to find out those types of interactions?

Thanks.
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