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 09-10-2007, 06:07 PM #1
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Default Symptom Migration: My Story

It is pretty much agreed that RSD begins with some sort of trauma (bump, bruise, fracture, sprain, injection, etc), and this trauma somehow results in a nerve injury. There is some stuff in the literature about other causes, but in the vast majority of cases, its physical trauma. But what happens after right after the injury?

The literature is almost silent on the early course of RSD. If the disease can be divided in to acute and chronic stages (and it can), there isn’t much information about what happens during the acute stage.

I have argued that it isn’t talked about because the acute stage is marked by warm, red skin, which later changes to the cold, cyanotic skin of chronic RSD, and the professional RSD community -- the experts -- don’t like to talk about specific skin colors because they don’t have any explanation for how nerve damage can affect skin color.

Thus we see the Fact Sheet on CRPS, published by National Institute for Neurological Disorders and Stroke (NINDS) (2006) [1]*, telling us: Typical features include dramatic changes in the color and temperature of the skin over the affected limb or body part. But this isn’t really an accurate description of what really happens.

In their Fact Sheet on RSDS, published ten years earlier (1996), NINDS was more accurate: One visible sign of RSDS near the site of injury is warm, shiny red skin that later becomes cool and bluish.[2]; this is certainly more in line with the experiences of people with RSD.

Some may not remember a warm, red stage, or never experience the cold, blue of cyanosis, and may not relate to what I just wrote, but most of you can. Something causes these signs, and even if you don’t experience them that same something causes your RSD, so please don’t discount what I have to say because you think your RSD is different.

As I talk about my experiences with symptom migration (spread) it is important to keep in mind that RSD does begin with warm, red skin; and that is the hallmark of inflammation. Inflammation has a significant role in my story, as you will see,

Inflammation can occur for many reasons; we see it in infections, sore throats and after we hit our thumb with a hammer, and in RSD; but in all three of these examples, the source of the inflammation is the same: A group of molecules called reactive osygens. Foremost among them are oxygen free radicals (OFRs); the oxidants that antioxidants get rid of.

They are the weapons our primary white blood cells (WBCs) use to attack and destroy pathogens of every sort, and to destroy healthy cells when you hit your thumb. There isn’t space here to explain why it’s a good idea for our WBCs to be attacking healthy cells when we injure ourselves, so you’ll just have to trust me, or look up the immune response to trauma on almost any search engine.

I would love to talk about how this immune response can go wrong and spread rather than end, but that would take at least 3 times as long as this post will be. I will explain it in future posts, but right now the topic is symptom migration.

Nobody knows what causes symptom migration. They can’t find anything in the blood or lymphatic fluids that move the disease around the way a virus or cancer can; they can’t find anything at all. If you read the most popular article on the subject, authored by Maleki and Schwartzmann [3], you will see they have some guesses, but no facts.

I just told you that the immune system uses OFRs to destroy things like viruses and tissue, but did you know that the vast majority of the OFRs in our bodies come from our cells? Our immune system can release hundreds of millions of OFRs when it’s fighting a virus, but our cells release hundreds of trillions of them every day.

The reason OFRs haven’t destroyed all of our cells is that the immune systems uses millions of them to attack a hundred-thousand cells, so the odds against those cells are several thousand to one; but we have about 100 trillion cells, so the odds of against the cells here are just a few hundred to one. The cells win, but they do suffer some damage.

Natural antioxidants do a good job of keeping free radical damage under control; unless you have RSD. I don’t know why we seem to lack adequate antioxidant protection; it could be genetic or environmental (lots more chemicals in our air now), or something else, but as you read my story, you’ll see why I believe we need extra antioxidants: When the OFRs win, we suffer.

There isn’t space here to talk about why I began taking antioxidants, but I feel I had good reasons; you can decide for yourselves whether my evidence gives you enough reasons to begin taking them as a precaution.

I developed RSD in my left foot following an injury in 1995. By late 1996, it went to my right foot. It was about that time that I decided to begin taking the antioxidant grape seed extract (GSE), and in the ten years since that time I have not had any new RSD symptoms.

You can’t know whether a drug (or supplement) prevents something from happening until you stop taking it and something goes wrong. So I’ll talk about what didn’t happen while I was taking them, and what went wrong when I stopped.

A year or so after I began taking GSE, I did begin to experience some minor inflammation at the inside of my left wrist; there was no apparent physiological reason why this should happen, so I assumed it might be the first sign of symptom migration.

I had heard of the topical antioxidant DMSO, and decided to try it: applying it to the inflamed area 3 or 4 times a day. In 2 or 3 days, the inflammation subsided; only to return in about a month. I applied more DMSO and it went away again. This went on for two or three months, and then I got my GREAT IDEA.

Why buy GSE if DMSO got rid of the inflammation? So I stopped taking GSE. In 2 to 4 days, I woke up and both arms and both legs were inflamed. They were red and felt sunburned. My first thought was “Oh ****, I’m in trouble”.

I started popping twice as much GSE and smeared DMSO all over, and after a couple of days, the inflammation went away. That much DMSO made me feel pretty sick, but sick is better than possible full-body RSD. I realized that the minor inflammation in my wrist meant that the GSE had almost kept all of the inflammation away; and that the better idea was to take more GSE,

Two or three years later, I went into a severe situational depression. I mean SEVERE. I spent much of my time thinking about the night I was almost killed in a firefight – and wishing I could go back and do it right this time. I was so distraught I started to forget to take my GSE.

Sure enough, the same thing happened again. And I responded the same way and the inflammation in all four limbs went away again. I will quit smoking if I have to choose between that and GSE.

I can’t prove the inflammation would have become RSD. The only way I could prove it would be to stop taking GSE and see what happens, and I’m not gonna try that. I believe it would have.

So there you have it; I can’t say that GSE has prevented symptom migration, but I firmly believe it has delayed it until now, and that it will keep on delaying it as long as I keep taking it. I can say that I began taking GSE ten years ago and since then have not experienced any new symptoms anyplace in my body.

I believe that taking 300mg of grape seed extract daily has delayed symptom migration. This dosage costs me $12.00 per month at General Nutrition Centers. I hope my story will encourage you to follow my lead: Doing nothing makes this terrible consequence almost inevitable…Vic


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Last edited by Vicc; 09-11-2007 at 12:55 AM. Reason: change hopy to hope
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Old 09-10-2007, 08:18 PM #2
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Default hi

Thanks for the info Vicc- Can u tell me exactly what brand of GSE you use as I know these supplements are not controlled so who knows what we are actually getting...

I am contemplating trying the HBOT again -they are building one closer to where i live- DO you remember we talked and I thought the HBOT was making me worse? I dont know what to do anymore...

Debbie
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Old 09-10-2007, 08:57 PM #3
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very interesting Vic, as usual. i think you have convinced me to try the gse. May i also ask if you take medications? And are there any meds you know of that would be affected by the gse?
Joan
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Old 09-10-2007, 11:12 PM #4
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Hi Debbie,

I buy the one-hundred count, 300mg caps sold by GNC, they are inexpensive and I haven't shown the slightest inflammation since I began using them.

I'm not sure how long it will be until I write a post on HBO, but when I do post it, it will contain my recommenndations on dosage and atmospheric pressure, and the reasons for those conclusions. You can find them in Buckwheat's thread Vascular Issues, but my post will be much better organized and easier to understand.

Joan, before I began taking GSE I looked into overdosage, side-effects, etc, and couldn't find anything. I was unable to find a single report of overdose or of adverse reactions to foods or medicines or any side-effects at all in a product that has been used for hundreds of years.

Apparentlyy, GSE does only one thing: Neutralize oxygen free radicals...Vic
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Old 09-11-2007, 10:06 AM #5
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Thanks Vic. i know you do your homework and i appreciate it. i love anything natural since my liver does not process medications [poisons! ha!] well at all. i'm going to give it a try and let you know how I make out. and again thank you.
Joan
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Old 09-11-2007, 03:04 PM #6
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Vicc,

Do you know of a link that is easy to understand the pressure levels of HBO therapy. I would like to give the lowest setting a go. Hugs, Roz

Last edited by buckwheat; 09-11-2007 at 03:35 PM.
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Old 11-24-2007, 09:44 AM #7
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Bumping for those who arrived in the last couple of months...Vic
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Old 11-24-2007, 08:40 PM #8
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Default Hyperbaric Oxygen Therapy Abstracts & Studies Used to Treat Medical Conditions

http://www.hbotxofpalmbeach.com/abstracts_study.html


S


oop just saw the dates

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Old 11-27-2007, 02:38 AM #9
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Confused Careful!

Hi there!

While I believe that everyone has the best intentions and want to help others by recommending supplements, you still have to be careful even if something is "natural". Just because something is touted as being natural does not mean that it cannot have side effects or medication interactions. For example, vitamin K is a seemingly harmless, natural vitamin. But people who are on blood thinners can have clotting, heart attacks or even strokes if they take vitamin K while on such medication. Hell, cocaine is a "natural" drug.

Grape seed extract does have reported side effects, and some medication interactions. It can cause abdominal pain, cough, headache, nausea, sore throat and dry or itchy scalp. It can also inhibit blood clotting, which can be very dangerous. And if you are taking blood thinners GSE can amplify the effects of the medication and can result in uncontrollable bleeding. Also, GSE taken with vitamin C can increase blood pressure.

So please exercise caution with these supplements. We're all on a lot of meds and sometimes there can be pretty severe interactions! Just google and you can find this info.

Linnie
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Old 11-27-2007, 06:43 AM #10
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Default Thanks

Thanks for this Vicc.
I agree that more research needs to be done about RSD, there isn't that much research going on at the moment.
I think that the fact sheet by the National Institute for Neurological Disorders and Stroke (NINDS) is accurate, it tells you a short description about colour changes, it is good because young people like myself can understand it.

I have tried many supplements including Grape Seed Extract to try and help reduce swelling but they don't seem to work. The swelling in my leg goes down every so often but then it comes up worse than ever, I only developed swelling after a Guanethidine nerve block, and I have later found out that my PM doctor thought I had compartment syndrome as a result of the block.I am also experiencing horrible colour changes which I didn't have before.

Thanks
Alison
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