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

Hi Jules,

I would love you to post your approach on here because there's at least one person besides you who works and avoids narcotics, and that's me.

As you may remember my RSD is mild these days. It wasn't for the first two years, though. Like you I have never had blue/blueish skin, my left hand is just a bit greyer than the other, but still pink, and I have sometimes thought of asking Vic the same question because, by his criteria, I also wouldn't be considered to have RSD. Doctors here agree that's what it is, however.

I think though, that cyanotic skin need not be more than greyish necessarily.

My RSD was very much worse before, when it was vivid red, throughout the first year and well into the second. But I have a deep belief that oxygen-starvation does play a significant role in my case, despite the lack of obvious signs of cyanosis. I know that's not very scientific....but I have a gut feeling about it.

I don't take GSE and so far have not had the RSD spread (yet) although in the last year I have developed RSI in my right hand and arm.

But I take as much (cheap) nutrition supplement, food and drink which contain free radical scavengers as I can; and that is really the point.

GSE is prohibitively expensive here; not only is it imported but HK loads massive tax on the "luxury nutrition" market. But no matter, you can get a very large amount of antioxidants into the body every day by being selective about what you eat and drink. Chinese green tea is stacked with FRSs, for example.

My guess is that while Vic may well be right about the ischemic-reperfusion injury component I don't think that's the whole story, by a long shot. There are too many other variables for that to be the entire answer. But if it could be recognised as a major part of how RSD presents itself, I believe it would go a very long way to determining some kind of effective treatment.

BTW, Jules, when one of my dogs was poisoned (he died in 20 minutes, we think by accident, someone trying to get rid of their rats, perhaps, using strychnine which grows wild here...) he went royal blue, quite unmistakable despite the fur....horrible, my poor beloved boy.

So...just wanted to encourage you to tell us (well, me!) more about your approach to your own management of RSD. I take an approach rather different from the "forum mainstream", myself. So...please?

all the best

good for you not taking narcotics and still being able to work! .... i have not been able to work for years, but i do not take narcotics and do keep very busy, as much as my pain allows each day. i think of it as fighting the good fight. i believe that everyone does that at thier own pace, since rsd is so varied and so are people's pain tolerances. never be uncomfortable with how you live with rsd. it is not east for anyone, and how anyone survives is great in my book.
i have never tried grapseed but i do take vitamins, daily women's, and extra B complex, C, E, and betecarotene.
best to you, joan

Hi Joan ,

I do take very low-dose Neurontin (antiepileptic), about 600 mgs per day, for RSD, and cafergot for migraine; what I meant by no narcotics was no pain-killers, nothing that brings on too much brain fog or loopiness.

The neurontin pushes the pain into the background enough - it never disappears at all, but makes it tolerable. As I said, I'm fortunate at the moment to have RSD mildly - frankly, the RSI is turning into my Big Problem at the moment. But if the RSD returns to the levels of 18 months ago I'd probably change tactics, and may have to soon if the RSI continues at the present rate. However, since I have to work (no choice), I just can't function on too many drugs, so...that's it, really, I need to function.

I'd quite like to take more Neurontin, but it makes me doolally!

OK, cleared that up,
all the best

Hello..
I too do not take narcotics, though I am on alot of other symptom related drugs like lyrica and baclofen etc..
I can not work but keep as buisy as possible, I have had alot of spread as well and though I do drink alot of teas with high antioxadents I was not taking it (white tea's good too) as regularly as I should have I am sory to say.

I guess it is that I have had some odd feelings when I post different places and mention I still work, or that I am not on a daily long acting pain med.

One, it seems that people are always telling me I can't get better unless I get my pain under control by using the pain meds. Well, truth is that the ones I have tried didn't even touch the pain I have, so I figure, why even go there. For example, I have taken 3 vicoden at a time (on Dr.'s orders), been on 75 duragesics and it didn't even PHASE it. Not one bit. Have tried some others too, when I had it in my foot, oxycontin, percocet... didn't help at all.

And, that I will get worse unless I get my stress under control and the only way to do that is stop working.

I love my job - I have fun at it. My job is a stress reliever to me. No, it's not good for my shoulders to sit at a computer, but my job, working at a printing company doing photo manipulation and graphic file work, is very creative, and I just LOVE it. I hate it when I have to miss a day. I am lucky that it's not at all physically demanding. My drive to work is about 20 miles with only one small town to go through, and the last couple miles are in the larger city -- the rest is rural back roads. If it's a bad pain day, I can drive 30 mph and go down the middle of the road if I want. Or I can do 55. What ever. So... it's a job I love, a reasonable drive, and also a company that is understanding with a great boss. I just cannot see quitting.

And, about not taking pain meds.... this does not mean that I don't live with horrid pain. I just went to the dentist to fix four more chipped teeth from clenching my jaw in pain. My family members say I am not the same person I was before all this, that I rarely smile or joke anymore even though I thought I was hiding all this pain really well. They say my personality has completely changed. Let me tell you -- every day is STILL a struggle. I would certainly rather just stay in bed and hide and watch TV with my cat. Somehow, I manage to drag myself out everyday. Somedays are easier than others though. And there are still more bad days than good.

I have just tried very hard to learn to not be afraid of the RSD and especially not of the PAIN. To not let it take over my life. When Mike talked about Shinzen Young's book, it was right when my massage therapist was trying to teach me about meditation to help with my terribly tight muscles. She has seen me as a patient before the RSD - and says of all her patients I am the WORST for tight muscles. She really "does not know how I live in my body" and that was before the RSD. Well, after reading and trying the Shinzen Young book... It just hit me that I don't have to be afraid of the pain. When the fear went out of it - something sort of magical happened in my ability to handle it. I am still the tightest person my therapist works on, but I am improving. I was fallen on by a large horse in a riding accident when I was 17. The horse and I tumbled down in an old canal bed... a fall of about 12 feet or so, and I landed under the horse. I have had very severe spasms and muscle pain ever since. So, perhaps my tolerence is more than an average person for pain because I have lived this way for 30 years already. Don't know.

There have been many nights at work that I have sat at my desk with tears going down my face for hours because it hurts so bad... but I stay with it. I have not found anything that makes it any better... if I was home laying in bed, it would still hurt just as bad, so I may as well be at work doing something I love.

I do take some medications that help, and lots of supplements, and do exercises, and the massage and meditation --- it's not like I am doing nothing.

When I get a chance, then, I will try to write up what we have done for my RSD, and what has helped, what has not. I am not the most confident writer... as I took almost all art classes in high school, went to art college.... did not do English classes, and I know that I do not talk or write with proper English. It intimidates me and keeps me from expressing myself very often. (and especially since they put in the 12 hour edit - that you can't go back and edit your posts after that. I used to see where I had worded things really badly, and edit and try to clarify, but now, can't do that unless I see it right away.)

Thanks, artist, for your interest. Sounds like you and I are sort of walking the same road.

Jules

Hi Jules,

Yes, we do seem to be walking the same road. Don't worry about the writing - note-style will do, LOL - I do agree about the edit thing, too! Thanks so much for posting this, I think it's important that the forum should represent the whole spectrum of RSD...well done.

all the best

I am one who does take pain meds. BUT I think that the whole spectrum should be addressed also. It doesn't make it wrong or right whether one takes pain meds (narcotics/opioids) or not. In my estimation it is whatever works for one is how one should address treating & dealing with RSD. Whatever works for anyone individual is exactly how that individual should slap their RSD down.

I too have been in pain my whole life due to having Fibromyalgia since being born. And I think, that once surgery in my foot set it off into even worse realms of pain than I though anyone could survive that I finally reached the level of pain with RSD where I just could no longer handle it, Fibro & RSD both, without some type of narcotic/opioid medication help. I am not afraid of having RSD anymore either & I agree, once you get past the fear of it, it is easier to cope with having RSD. But I didn't reach 'there' until I was able to come down out of the realm of pain I was in, because I couldn't think past 'that' level of pain. And before having RSD, Fibro would knock me flat on my back so to speak off & on also. The two types of pain are very distinct in their aspects, atleast for me it is. Then sometimes the two evolve into each other. Especially in my feet. And neither narcotics nor opioids ever help the Fibro pain.

I did have to quit my job even tho I loved what I did also. I cried buckets over giving up that job. And to this day I still miss it. I had always wanted to work in the Social Services area & I finally got a job in our local Social Services office for the county in which I live. And I excelled in it. But talk about STRESS!!! oh my gosh. You had to be on top of all laws & procedures for the county, state & federal government. And they all seemed to change weekly, if not daily sometimes. I think it is great whoever out there is able to continue working. I envy all of you who can. I have times when I think, hmmm maybe I could go back to work, or I think if only I could feel like this every hour of every day I could go back to work. Then WHAM, I get hit with break through pain & it puts the kibosh on that thought in a hurry. I do try to do things around the house to keep my thoughts off of RSD. I love movies & certain TV shows. I love to read. And I also attempt what housework I am able to do. I can't keep house like I wish I could. I see all these things I know need doing, but now I just can't do them anymore. I would have to say the drugs that knock my socks off into lalala land are Lyrica. And the drug I take that worries my doctor about my driving a car isn't the morphine I take, it is the Neurontin I take. Those are the two that also have my memory no longer functioning as it use too either.

Now as to the cyanosis, I have never had the blue color in either of my feet or my hands. I must have maybe what is termed HOT RSD *L* cause I feel burning in my feet & hands. And talk about RED whhhhhhoaaaaaaaaaaa baby they get so red they look maroon/burgundy to red violet in color. Now don't get me wrong, they also will get cold, where they feel cold to the touch even, but they still remain RED as RED can be. I take Trental to help with oxygenation to my appendages. I do think it helps alot. I have been on it for over 3 yrs now so that could be why they have never reached the color blue. But again I have also had several LSB's & SGB's which according to my doctor can stop alot of the visible symptoms from happening. Even if they dont seem to help with the pain side of it. The LSB's didn't seem to help with the pain in my feet much at all, but the SGB's have helped alot with my hands. I wasn't taking Trental during the time I had the LSB's done, but was way before I ever had any SGB's done.

I have been fighting this bugger ever since 11/03 if not before. I just wanted to add my, well was going to say 2 cents, but looks more like several $$'s worth instead *LOL*

More power to whatever works for anyone of us.........

DebbyV

I too have no blue color in either my feet or hands. However, my feet are bright red on the soles especially and burn like crazy. My hands are somewhat pinkish. The RSD Dr. observed that both my hands and feet were the colors that qualified for an RSD diagnosis in those areas. So I guess they don't have to be blue to qualify for RSD diagnosis. Mine were never blue although they were burning like crazy.
Yes, the fibro. responds to nothing - narcotics, anti seizure drugs,etc. I think sometimes the fibro. pain is worse than the RSD. Yes, they are 2 kinds of pain but do overlap. The fibro is such deep aching, RSD is the burning, stabbing. Yet I read where fibro can do that as well. Very confusing to have both as a diagnosis.
Sydney

Heya

I have dramatic cyanosis - my colour changes range from black to bright burning red - but I generally have freezing blue/ purple limbs.... and I have "cold" RSD.

Jules - I find that many of your strategies work for me too. I didn't start getting my life back from RSD (Well, with RSD) until I discovered that I was in pain doing nothing and in pain doing stuff - so tried to get on with my life. It was how I got back to college and decided to go to uni. I KNOW that anything that touches me will HURT so much - BUT - if I am on bedrest then it still hurts an awful lot.

I have taken narcotics from the beginning - I did try to stop taking all tablets for a while - but that wasn't good at all. I find, personally, that I HAVE to take some form of opiod to try and reduce my pain levels.

There does appear to be a bizzare seperation between people who work and people who don't. I have had RSD for 5 years and I am now in university full time. It is HARD, my pain generally has increased and some of the more unpleasant symptoms have got worse. BUT, if I am not able to do something with my time then I end up with WORSE pain because I am not distracting myself. There are days when I can't manage lectures or work.

I guess that with people who have a job/ course they love then they will do everything to keep working - I mean if Artist gave up proper work she would still be doing her art - and it sounds the same for you. Therefore if you were to continue it anyway it makes sense to carry on at work if you can. Eugh, not explaining this well, but I hope you got the gist!

Keep at it Love

Frogga xxxxxxxxxxxxxxx