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


A [ ] with a number inside means I will email you a copy of the article cited. Just click the “rsd_hbot” link at the bottom of the page and type in the title of the post and the number(s) you want to receive.

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

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

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

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

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

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

Hello again, Linnie,

In your reply here and your reply to another post I wrote, you talk about blood clotting and anticoagulants; I just happen to know something about what you face, as both my wife and daughter have been hospitalized for DVT, and in both instances, doctors tried to prepare me for the very real possibility that they would die.

(My daughter was pregnant and needed to inject heparin daily; she and her children had to move in with us to be closer to the med center, and I remember waking early every morning in order to be the first to learn whether she survived another night).

In addition to two incidents of DVT, my wife has suffered two pulmonary embolisms and a stroke during surgery (age 34). I know something about the consequences of the disease you face, and about the dangers of anticoagulant therapy; it is a very delicate balance.

I don’t know what blood thinner you use, but I assume its warfarin, and that means you must be constantly monitored even though your dosage has probably been well-established over time. (For others: Warfarin is the active ingredient in mouse and rat killers; their blood stops clotting and they eventually die of internal hemorrhage).

Anything that could affect the warfarin, enhancing or inhibiting its effect, could cost you your life, so you must be extremely careful. The dangers of interactions between this and so many other drugs and foods may be greater than with any other medication.

After reading your reply here, I did a quick keyword search of PubMed and Medscape, and learned of research showing that GSE does enhance the effects of warfarin, and this may someday lead to a combination with fewer risks of bleeding; but not yet. Today, no one knows the proper balance, so it is simply too dangerous to combine the two.

You are justified in fearing GSE with your disorder, and the known consequences of birth control drugs and devices include abnormal clotting, so any woman who has experienced this and is on anticoagulants should avoid GSE, but that is not the case with most of us afflicted with RSD. In fact, anyone who has suffered clotting, but not taking anticoagulants, would most likely benefit from GSE as it appears to reduce the risk of future incidents.

My brief search turned up research showing that GSE is useful in countless disorders: Type “grape seed extract” into PubMed and you will find more than 200 abstracts talking about the benefits GSE in the context of many disorders; it reduces cholesterol, is effective in killing cancer cells in many types of cancer, and even reduces the risks of smoking.

For some reason, a keyword search using “antioxidants” and “anticoagulants” brings up more than 3900 abstracts, but not all involving anticoagulants; this shows that the number of uses for antioxidants has increased nearly exponentially since I first looked nearly ten years ago.

I see that in another post you appear to locate yourself in San Diego; as a neuroscientist there, perhaps you know of Stuart Lipton, M.D., Ph.D.; professor and Scientific Director of the Center for Neuroscience, Stem Cells, and Aging, Burnham Institute for Medical Research, and professor at the Salk Institute; Scripps Center and UCSD. Here is what he had to say about antioxidants.

In a lecture on Alzheimer's Disease (aired on UCTV on 4/01/07), Dr Lipton spent the first half-hour discussing the free radical theory on aging and the benefits of antioxidants. He did not mention GSE specifically, but did talk about resveratol (from red wine). He suggested wine alone will not provide adequate antioxidant protection; joking that one would need to drink "many, many cases of red wine a night" to achieve adequate antioxidant protection.

Later in the lecture he discussed how oxidants (oxygen free radicals - OFRs), damage DNA, and how they specifically misfold proteins, and that "Misfolded proteins are thought to disrupt the normal function of nerve cells, leading to their injury and eventual demise"

Speaking specifically about Alzheimer's disease, he talked about when NMDA (Glutamate) receptors in neural ion pathways are misfolded; they allow glutamate to build up to the point that these ion pathways (specifically calcium + ions) remain open and the cells "excite each other to death"

One of the original researchers into memantine, Lipton talked about how that drug closes these ion channels and then exits quickly, allowing the channel to reopen; but that he doesn't believe that will lead to a cure. In his opinion, the cure will be found in antioxidants that prevent Lewy body-like inclusions to the PDI protein that refolds proteins.

Finding the antioxidant that can cross the blood-brain barrier is a significant part of Dr Lipton’s research.

If the free radical theory on aging proves correct, antioxidants may be the most important discovery of the 20th century. I don’t believe they are the fountain of youth, but they could produce the safest and most effective medications ever known.

The other side-effects you mention are constantly reported with placebos, but whether they are, or aren't placebo effect, they are trivial compared with the benefits of GSE.

While I agree with: So please exercise caution with these supplements. We're all on a lot of meds and sometimes there can be pretty severe interactions!I don’t think this warning is appropriate to antioxidants in general or GSE specifically; it is safe, and even if I’m proved wrong about symptom migration, a wise precaution for nearly everyone…Vic

Hi Ali,

You wrote: I think that the fact sheet by the National Institute for Neurological Disorders and Stroke (NINDS) is accurate, which one?

The 1996 Fact Sheet is clearly a product of the prevalent belief at the time that the sympathetic nervous (SNS) system plays some sort of causal role in RSD, and since the SNS exerts tremendous control over circulation through dilating and constricting arteries, they felt safe in mentioning “cool, blue skin color”. They hoped that someday, someone would find out how the SNS was doing it.

In 2006, following the International Association for the Study of Pain (IASP) rejection of SNS causation, NINDS pretty much abandoned this idea. In addition, the view that this disorder is the result of central sensitization (CS) had taken hold; but CS occurs in the spinal cord and can’t explain a process in which skin is first red and then blue, so they changed those objective signs into non-specific color changes. That may help someone your age, but it doesn’t help clinicians confronted with this disease for the first time.

I have tried many supplements including Grape Seed Extract to try and help reduce swelling but they don't seem to work. There is no reason to expect that GSE would. GSE neutralizes OFRs, which cause inflammation. As NINDS once reported, RSD begins with warm red skin that later becomes cool and bluish; the warm red skin is inflammation, and by stopping it, you stop the RSD process before it becomes cool and cyanotic, and incurable.

It is true that swelling is a part of the inflammatory process, but it appears that other factors are at work here since swelling can continue long after inflammation ends. GSE would not affect those factors.

When I PMd your mother and recommended that you start taking GSE, my thought was that since it delays symptom migration by neutralizing OFRs, it might be effective even after inflammation becomes widespread. My message was based on the hope that it might still help, not that it would be as effective as it appears to be in preventing inflammation from developing.

Even if it does not stop the 2nd (cyanotic) stage from developing, I hope you will continue to take it: Much of your body remains unaffected, and antioxidants are the only protection I know of from further inroads by this disease.

.I am also experiencing horrible colour changes which I didn't have before. I don’t have anything to add to what I’ve said, but my concern for you compels me to ask if you could tell us more about these color changes: What is going on right now?

Your posts have shown you to be both thoughtful and spiritually generous, and all of us hate seeing you go through this…Vic

Vicc,
Just posting a quick reply. The fact sheet that I was on about was the one published in 2006.

My colour changes - the whole of my foot goes blue, yellow and black, is this normal with RSD? I am a bit worried about when my foot goes black.
I also get a 'red' colour around my ankle bone that comes and goes ever so often, this seems to happen when I try to walk on my foot for a short period of time (like 2 minutes)
The colour changes have got worse over the last couple of weeks.

Balance problem - I understand that balance problems can happen with Dystonia, am I right?. I suffer from RSD, Dystonia, and Arthritis. I have spoke to my PM doctor many times about the balance problems and he says that it is a Psychological issue - why would I do that?? I am getting sick of people accusing me of something that isn't true. I only developed the balance problems after a Guanethidine nerve block. Do you think I should see a different PM doctor at a different hospital???

Pain - I am getting a LOT of pain (the pains got worse over the last couple of weeks too, it is a 9 and a half on the pain scale)
I am getting a LOT of burning pain, a sharp shooting pain at the bottom of my foot, and a stabbing pain.

Muscle spasms - the muscle spasms seem to be worse (they come a lot more often than they did a couple of months ago)
My toes twitch up and down. I also have spasms in my knee, my physiotherapist and PM doctor says that I only have RSD in my foot, so why is my knee and hip shaking??
I twisted my knee a few weeks ago and I am getting pain in it (the pains a 4 and half on the pain scale)

Thanks
Alison