Originally Posted by daylilyfan

Vic
I noticed in another thread that you said that several forum members reported using grapeseed extract, and have not reported symptom migration.

I think I am one of those who you are thinking of as a grapeseed extract user. I take it everyday. (I am at work now, so cannot be 100% sure of the dose I take without looking at bottle - if I am wrong, I'll come back in tonight after I am home and correct this) I take 400mg a day. I get the best quality one that my local large health food store has. I take it only because you have recommended it.

Since starting the grapeseed - can't pinpoint exactly when, but it's been quite some time - I'd guess about 1-1/2 years ago.... my symptoms have spread from the left shoulder.

I now have it back in my original site of my right foot.
Also, it moved across my upper back, and I show signs in my other arm/hand - the redness, coldness and skin is shiny.
It moved up my neck and is along my jaw, ear etc onto part of my face.
It moved down from my upper shoulders to my shoulder blades, and now stops just about waist level.
For some reason, it went to my remaining good foot, but only a very small area on my big toe.
It also seems to be in my right knee - but could be a bit of arthritis flaring up. Not sure on this one.
In the last few months, it's been moving down from my left shoulder across the front of my chest. The new pains had me worried a bit about a possible heart problem, but neurologist feels it is nerve pain, increased the baclofen, and I have not had the electric shock pains there since.

I still take the grapeseed extract because as an anti-oxident, it can't be bad for me, and who knows what shape I would be in without it? IF RSD is genetic in my case, I wonder if there is a possibility that my case COULD have been the same as my half sister. My half sister had RSD, and in very little time it went full body, and was really bad. She could not take it and committed suicide. We did not live close, I did not see her while she had the RSD. In fact, I did not even know she had RSD until I went to her calling hours. I was shocked when I saw what RSD did to her in the time since I had seen her last. She was a shadow of her former self.

So - I do continue to take the grapeseed, because it may be helping me a lot more than I realize.

Over the last 20 or so months of RSD being active again... I have very slowly made progress and am getting a bit better. This is about the same thing that happened when I got it in my foot. My pain doc said it is partly due to the fact I have not taken narcotics, but mostly that I have kept working (the two things he stressed to me in the beginning were stay working and stay off narcotics/opioids). I don't know if I put much weight into his statements because he has not treated that many people with RSD. Dr. Dews with the Cleveland Clinic thinks that my progress has to do with the massage therapy I continue to receive. She treats a lot of people with it, and I do value her opinions. (by the way, she said I have "cold" RSD - told me that 15 years from now we will know that there are many, many forms and presentations of RSD.) I think the massage plays a big part, but I personally think I have some form of RSD that just gradually gets better with time. I know my approach to treatment has not been "conventional" - I have not had a lot of blocks (only 2 - they did not help) or aggressive PT and have not taken many pain meds compared to most folks. I don't take lyrica or neurontin or anti-depressants, although I have briefly tried them. Just could not take them.

One of these days maybe I will put into writing the approach I have taken and post it here. But I am a bit afraid of being put down for continuing to work and not taking pain meds on a regular basis. Not that this is the right choice for everyone. Or that I think less of any one who stops working or takes pain meds. This is just the path I ended up taking, and it has slowly helped.

The first time I had RSD, it stayed in my foot. I did not know about grapeseed when I had it in my foot. This time though, it has spread. Even with the spread, though, when I look back to a year ago -- I am better now than I was then.

Sorry, Vic to burst your 100% success rate on the grapeseed.

I do wonder also about your posts on cyanosis. I have never had a blue hand, only bright red, red, burgundy, or deep purple. If I read your posts correctly, does this mean that in your opinion I cannot have RSD even though I have skin, hair, nail, temperature changes etc? That to have RSD, I must have cyanosis, and that cyanosis must be blue ?? I had quite a discussion about cyanosis with my vet friend, and we looked up cyanosis in several of his medical books... and he came to the conclusion that a cyanotic hand would not have to be blue... it could be burgundy or red-purple. But that since his experience was with fur covered patients he had no clinical experience with seeing it other than in gums and ears, and sometimes it can be seen in the bottom of paws or in the genital areas of animals if they are very ill, but he usually looks for it in the gums and ears.

Jules