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

Hi Ali,


I hope you don't mind me answering your question about the colour changes in your foot when you said you were worried when your foot goes black.
If your foot still has the ability to return to a normal pink or red colour after a period of cyanosis this means there is still the ability for blood to well oxygenate your foot and there is probably no permanent damage to the vessels and tissue.
There are many reasons for cyanosis and in CRPS/RSD it is still thought to be due to vasomotor changes of sympathetic dysfunction if it is not being caused by some type of tourniquet effect in which the flow has been temporarily stopped.
Some people have very cyanosed extremeties from a disease called Peripheral Vascular disease where the circulation is poor due to disease in the blood vessels, this is most common in those who smoke heavily.--- I am sure this does not apply to you
When skin is cyanotic all the time this may reflect that the tissue is not being well oxygenated and this is when there is more likely to be trophic changes occuring as a result.
Definitely trying to keep your limb working and moving will encourage blood flow and also reduction of oedema will also encourage blood flow.
I do hope that you are going to move on to a Pain Team who can work with you and help you get better by applying a multidisciplinary approach to your pain management and management of your mobility.
You are way to young to have to be dealing with this but at the same time your youth should radically help you to get healed.
All my good wishes to you
Love Tayla

Vicc-
While I appreciate your understanding of clotting issues, my own personal experience with this problem was not the impetus for my posting. Yes, there are things that can interact with coumadin that can produce deleterious effects. It's definitely a tempramental medication! But my warning was not just for coumadin users, and it was more objective than you make it out to be. Anyone who is on any medication should be cautious when adding anything to their regimen, whether or not it is a prescription drug or a 'natural' supplement. These can be powerful substances, even if they are found in the vitamin section. Too much vitamin A or vitamin E can have toxic effects. You have to be careful when taking such supplements. For instance, you casually mentioned taking DMSO, but DMSO is a very hazardous substance that is a powerful organic solvent. The material hazards page for this chemical advises having no direct contact with DMSO and washing it off immediately if it does touch the skin.

Also, there was a landmark study on antioxidants that came out in the Journal of the American Medical Association (JAMA) that actually implicates them in increasing mortality. It was a systematic review of hundreds of other studies. They included 68 randomized trials with 232 606 participants from 385 publications. The authors found that beta carotene significantly increased mortality. And there have been recent studies that suggest that beta carotene my act as a cocarcinogen. Vitamin A also increased mortality dramatically, as did vitamin E. Vitamin C had no significant effect on mortality, but the sample size of vitamin C takers was much smaller than the sample size of other antioxicant takers. But still, it did not increase mortality. Selenium also had no effect.

The authors acknowledge that the findings directly contradict the findings of observational studies- it is folk knowledge that antioxidants are beneficial, but when the hard science is performed, you can see that they actually have a detrimental effect on health. They suggest that oxidative stress is most likely an effect of disease processes rather than the cause of them. Also, free radicals DO perform essential defense mechanisms in the body. They help in apoptosis (programmed cell death- the body's way of eliminating dying or mutated cells), phagocytosis (a white blood cell's ability to engulf and "eat" foreign invaders or damaged cells) and detoxification.

So in the face of this evidence, maybe people should be cautious about these specific supplements, but one should be cautious about supplements in general. Natural may not equal safe. Also, these are completely unregulated and their purities cannot be ascertained. It is virtually impossible to know what kinds of impurities and toxins are in these supplements, most of which are manufactured in China.

http://jama.ama-assn.org/cgi/content/full/297/8/842

Linnie

We do have Drug Interaction checkers in our useful sticky thread and on our Medications forum.
I think many do include supplements in most of them for checking.

I'm sure we all encourage everyone to use those tools to double check all their meds and talk with their Dr before making changes.

Linnie,

I’m sorry you took my reference to your posts discussing your experiences with a blood disorder as some sort of editorial about your motives in your previous post: But my warning was not just for coumadin users, and it was more objective than you make it out to be. You specifically discussed blood thinners and I felt an explanation of them was necessary and related my experiences to show I fully understood the import of what you said. (For the reader: Coumadin is a brand name for warfarin).

As to your statements here, I will try to reply briefly and directly to the points you make.

For instance, you casually mentioned taking DMSO, but DMSO is a very hazardous substance that is a powerful organic solvent. I also wrote: That much DMSO made me feel pretty sick, but sick is better than possible full-body RSD.

I have written posts about DMSO in the past, including abstracts demonstrating the efficacy of that drug in the acute (inflammatory) stage of RSD, and; that the Government of the Netherlands has mandated that physicians there make DMSO available to their RSD patients.

DMSO is topical and I believe we need a systemic antioxidant. I don't recommend its use, if for no other reason than daily application to one's extremities would be messy and could make you feel sick.

I have written numerous posts and don’t fault anyone for not reading all of them, but I want to make it clear that there is scientific support for the use of this volatile chemical. As in many things, we constantly make decisions involving balancing risks and benefits, and in this instance, I felt the circumstances justified the temporary discomfort I experienced.

Also, there was a landmark study on antioxidants that came out in the Journal of the American Medical Association (JAMA) that actually implicates them in increasing mortality…..The authors found that beta carotene significantly increased mortality. I did a quick Yahoo search of beta carotene and found a link to the University of California, Berkeley Wellness Newsletter (which I assume to be a reliable source), which included this passage:

Beta carotene is one of several carotenoids, natural plant pigmentsfound in deeply colored fruits and vegetables. Others include alpha carotene, lutein, lycopene, and zeaxanthin. Beta carotene and some other carotenoids are “provitamin A carotenoids,” meaning that the body can convert them into vitamin A. Beta carotene is also an antioxidant; thus it may help deactivate free radicals, unstable molecules that are by-products of cells “burning” oxygen for energy. Free radicals can damage the basic structure of cells and thus lead to chronicdiseases (notably cancer and heart disease) and accelerate the aging process. There is no daily recommended intake, or safe upper level. (emphasis added)

Beta carotene is not an antioxidant; it has antioxidant properties. The same is true of vitamins E and C. They have other functions besides neutralizing free radicals, and I’m perfectly willing to concede that those functions could be harmful, especially when consumed in large quantities.

Antioxidants appear to have a single function: They surrender an electron to a free radical molecule, allowing it to return to its normal state. Without antioxidants, they would steal an electron from another molecule, which would restore them, but turn the victim into a free radical.

These electron thefts are chain reactions in which the cells loses energy with each theft, and when they involve DNA, they enhance the risk of mutation.

I do not recommend any of these things as useful in delaying the onset of symptom migration. I recommend antioxidants and specifically GSE because of its low cost and widespread availability,

it is folk knowledge that antioxidants are beneficial… I refer you, and everyone else, to my statement that I found more than 3900 abstracts discussing antioxidants in my brief PubMed search, and suggest that this is more than “folk knowledge”. When in doubt, forget Jimmy Buffett: Research it for yourself.

ADDED LATER: Using "antioxidants" as the single keyword, I found 65,235 documents listed in MedScape and 242,148 in Pubmed; this suggests that science takes this subject very seriously. Not all of the documents found at these sources represent actual research, but scienctists don't waste a lot of time on "folk knowledge", urban myths, etc).

Also, free radicals DO perform essential defense mechanisms in the body. They do indeed: In fact, they have been identified as neurotransmitters too.

They have also been identified as damaging nearly everything they touch. The roles you mention are destructive (sometimes beneficial for the body), but to put to rest fears that antioxidant supplements could impair the body's ability to perform these functions: Our mitochondria produce one OFR for every ATP, with some cells containing more than 100 mitochondria, and estimates of 50 to 100 trillion cells in our body, I don’t think an additional 300mg of GSE daily will reduce OFR levels to a point that the body suffers.

So in the face of this evidence, maybe people should be cautious about these specific supplements, You haven’t provided any evidence that antioxidants in general, or GSE specifically, poses any danger whatsoever (except with the concurrent use of anticoagulants).

It is virtually impossible to know what kinds of impurities and toxins are in these supplements, most of which are manufactured in China.

I suggest you’re suggesting that we avoid putting anything into our bodies that we don’t know for sure was made or grown in the U.S. In that case, one must still be very careful: Witness the recent reports involving E-coli in spinach, lettuce and ground beef.

Nothing you have written persuades me that grape seed extract poses a greater threat to my health than the widespread inflammation that resulted when I stopped taking it. I hope it doesn’t persuade anyone else, either…Vic


NOTE: Ali, I will reply to your post, but I got so angry at the way you are being treated and your obvious signs of RSD ignored, that I decided to follow my 24 hour rule: Take a day to calm down…Vic