Vic - grapeseed extract/cyanosis
 

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 :)

me too
 

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.

working
 

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 :hug:

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

No blue color either
 

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 :D Love

Frogga xxxxxxxxxxxxxxx

Work
 

Dont know how this got to work or no work lol. But, it is a good subject, and one we all need to read about. One thing I have learned is that we all are different in the ways this monster has effected us, and how we are able to deal with it.

I never got to try the grape seed because I am without the money to sustain the dosage, or even begin for that matter :)

I always wanted to though.

As for work, man that is something that I have fought with my inner self over for about 5 years. And about meds, well I remember that it took my doctor 3 years to get me to at least try them, and I found they work more than I thought when the doc dropped my insurance. So now no meds at all.

For me the losing the ability to work did not come on all at once. Little bit by little bit this monster has taken my life away from me. Just today I was outside talking with a couple of my boys about how I feel life has been passing by as I watch.

Then my son pointed out that when I was working life was still passing me by :eek:
He said that the difference is I was never around to experience life, I was always working. So life was passing me by. Now he says at least you get to play with the kids, and sit and talk with us. So it only a perspective, how you see it.

I think it depends on what you worked at, and how your employer would deal with the problem employee. I could never go back to what I was doing, even though it was a cush job. There is no way I am able, and my employers wouldnt put up with me missing days on short notice, or going home early etc.

It doesnt mean I gave up, cause I didnt. I tried to start my own business thinking I could make my own hours, not answer to a boss. But found my customers were my boss, and they also wouldnt put up with my problems. These problems effect every aspect of my life.

It has been 5 months since the pain meds were takin away, and in all honesty I would jump at the chance to have them back. I never realized how much they helped. I would estimate on most days it took 35 to 40% of the pain out. That is a lot compared to the 100% I am feeling 24/7 now. :winky:

I started this thread mainly to ask Vic about the cyanosis, and have not seen him respond yet. Vic, I hope I did not upset you with my grapeseed observations?

I am also hoping that you all realize I am not trying to say ANY of you that cannot work should be. Or that I am trying to be one up on you. It is just how it worked out for each of us with this disease. It does affect everyone differently. If just a couple things changed in my life - I would not be able to continue like I have been. It's a delicate balance.

One thing in my favor is that I have very little of the traditional sensitivity. So I can wear clothing and be around wind, fans etc. That alone makes a huge difference. I do have sensitivity - but it takes a little different form. For me, showers are painful. Massage is painful, but it keeps me together and healing... and the worst is unknown touch... like someone coming up behind me and patting me on the back when I don't know it's coming. You might as well figure I will be in increased pain for 2 days in that area after that. I can only wear certain types of fabrics for socks on my RSD foot - nothing harsh or itcy - soft and fluffy is best. My point is though... that if I had a problem wearing most clothes - it would make it a lot more difficult.

When I first had it in my foot - I was on crutches for almost a year, in a walking boot for a couple years, an AFO for a couple years. It was a lot harder to deal with then than now, when it's mainly in my upper body, and I am pretty much mobile. BUT - if it comes back with a vengence in my foot, to the point of needing crutches.. these shoulders will not be able to do that. I don't know if my employer is willing to go so far as having me at work in a scooter. Or what would happen if I could not drive.

I worry a lot about these things.

And, about the pain meds.... maybe if I had success with any of the ones I had tried (none relieved my pain to any real degree), I would be more open to trying stronger ones, or bigger doses. But I have not had any luck with the pain in my foot or this time in my shoulder with neurontin, lyrica, cymbalta (or probably 15 other anti-depressants), maybe 5 different muscle relaxers, a LOT of anti-inflammatories, oxycontin, percocet, darvocet, vicoden, ultram, duragesic, changing high blood pressure medications, steroids, botox, SGB blocks, tens therapy, Physical therapy at 3 places, choirpractic (sp?).... and I am sure I am leaving a lot out.

I am glad for those of you who can take the meds and have them help.

The only things that have helped me are topomax, calcitonin, baclofen... and now the norvasc is helping more than the clonadine. Prednisone will help if I am really really bad but I try hard not to take it. The botox helped, but I had a reaction to it, and he won't do it again. I did go to a great Occupational therapist at the Cleveland Clinic who taught me how to do therapy with RSD in general (don't make it mad!) and her program has helped. I also take some supplements that I think have helped.

I use lidoderm patches on my worst areas on my work days because they last the whole time I am gone. I use ketamine/lidocaine compounded cream the other times.

I do some of the meditation, I do about an hour and 15 minutes total day of stretching my arm and foot. I go to massage therapy as needed.... this has been the thing I believe that's helped me most. I've been told it may be the single reason I don't have the skin sensitivity in the way most RSDer's do. At first I was going 3 x a week, now I go every other week. I try to use my bad arm and foot as normally as possible. I open doors with that arm, etc to try to get extra exercise for it.

I do take ultram sometimes, but it helps my myofacial pain I had before the RSD, not the RSD very much if at all. Aleve helps my overall pain a lot, but if I take it at prescription strength or every day, I swell up like a balloon with retained fluid. So I try to keep it for when bad weather is rolling in (my worst time is when barometer is rapidly dropping) I have vicoden and vicuprofen I can take, but it really doesn't do much, so I seldom take it.

Two other things play into my being able to work that others are not blessed with -- a great employer where I have somewhat flexible hours, and since I work 2nd shift, if I need to stay in bed longer that day, or take a really long soak before I go in, it's no problem. There are not a lot of people who have the experience and qualifications I do, and my employer would like to keep me... so they are pretty tolerant of the nights I have to have a heat pack on, or have tears etc... they have another person who had to go on perm. leave because of MS and they treat him great. So.. I am not **to** worried about my treatment here.

The other is my elderly Mom lives with me now. She moved in 14 years ago then had both her knees replaced. She's 84, but you would think 55. She's a dynamo. She does about 3/4 the housekeeping, the laundry, mows the grass, does the grocery shopping. It's not always easy to live with your mother... :eek: ... but right now, I sure don't know what I would do without her. It's only the two of us though.. I don't have any other family for 150 miles. And very few friends - most have passed away unfortunately. Mom has outlived all her friends.

So, I have it really easy compared to a lot of you. It makes me feel really guilty a lot of the time when I read your posts -- I realize just how easy I do have it.

PLEASE do not think I sit here in judgement or on some high and mighty chair thinking "I am working and you are not".... no... it's just how it happened to fall this time. I could trip and fall down some steps next week and get it all down in my legs and be unable to work and everything could change in an insant. I know it too. I'm very scared of that day. I have been incredibly lucky to have this twice now and be able to stay working (the first time I was off for 2 months while my broken foot healed, but this time with my shoulder, I have not missed any time at all) and to actually improve given enough time (nearly 5 years for my foot last time).

All the best to all of you
Jules

Hey Jules,

I don't get mad because someone tells the truth. Sometimes learning a truth can make me stop and go back to the drawing board, but I believe in truth. I'm working on a reply and I'm working on the articles for the website, but right now I'm not working much on either.

I'm having a kinda rough time with pain, and doing all I can to limit it without taking more meds. The problem is that doing all I can really means doing less of everything; pain goes down when you don't aggrevate it by doing things.

Then there is the fact that my son brought me some stuff to smoke that is supposed to help with the pain. Well, when I smoke it I do less stuff, so my pain goes down. I guess its working. This stuff he brought me makes music sound better too...imagine that...Vic

I understand totally Vic! Great to have a son like that!

Jules

:ROTFLMAO: would this be stuff which is good when baked in cookies?

I tried it a couple of times but hurt SO much when it wore off was never worth it. I guess it's the muscle relaxant properties that kill me.

enjoy......

Froggsy xxxxxxxxxxx

I didn't realize it at the time, but my son gave me this early fathers day gift an the 50th anniversary of my introduction to the Evil Weed.

Just before the beginning of summer vacation, one day in May of 1957, I learned there is a better reality than the one I was trapped in. (For those who might object to my saying that being high is a better reality: Nope, my reality really, really sucked)

I am pleased with the gift. It's green, but doesn't taste like lawn clippings. It will never immitate the calculated insouciance of a 1967 Panama Red, nor the child-like exuberance of a '71 Maui Wowwie, but it is definitely light years ahead of any '07 South Dakota dirt weed.

It produced a gentle state that made me smile (for several hours); all things considered.....I've had worse days...Vic

P.S: Yes, Frogga, but did you inhale? The nice thing about baking it is that you always have something to eat when the munchies turn you into a mindless omnivore.

Lol..
 

;) I recal PMing you the sugestion you try it for your apetite problems back on ol B1.. was never quite sure you werent offended by my sugestion. It realy does wonders for me pain and stress wise and it does help the apetite alot, my stomach just isnt happy with food these days.. and the nausia it realy helps when nothing else seems to, lungs dont like it so I have to switch to brownies.. mmm.. :D

Be well bud,:hug:
Sandra

Hi again Jules, and everyone,

I waited to reply until I finished my post on symptom migration, which I will post right after this one.

The only thing approaching 100% in medicine is the smallpox vaccine, and even it has been shown to cause the disease in a tiny, tiny percentage of the population.

I don't claim that GSE prevents symptom migration but I do believe it will delay it for most people. I also know I could be 100% wrong; well, 99.9% wrong; it works for me. I wish it had worked for you.

I won't talk about cyanosis here, because I am working on a post on this topic right now and hope to finish it soon. I will say that there are several known causes for cyanosis, and that except for RSD, it is always treated as a critical sign that must be reversed.

No one knew how to reverse it in RSD, giving the "experts" time to realize that it is not a sign of imminent death or gangrene. Time to decide to pretend it doesn't even exist. But enough for now...more later...Vic

Speaking - or not - of cyanosis, I just got an email notification from Amazon.com of the following:

Oxidative Stress and Neurodegenerative Disorders (Hardcover)
by G. Ali Qureshi (Editor), S. Hasan Parvez (Editor)

Book Description:

Oxidative stress is the result of an imbalance in pro-oxidant/antioxidant homeostasis that leads to the generation of toxic reactive oxygen species. Brain cells are continuously exposed to reactive oxygen species generated by oxidative metabolism, and in certain pathological conditions defense mechanisms against oxygen radicals may be weakened and/or overwhelmed. DNA is a potential target for oxidative damage, and genomic damage can contribute to neuropathogenesis. It is important therefore to identify tools for the quantitative analysis of DNA damage in models on neurological disorders. This book presents detailed information on various neurodegenerative disorders and their connection with oxidative stress. This information will provide clinicians with directions to treat these disorders with appropriate therapy and is also of vital importance for the drug industries for the design of new drugs for treatment of degenerative disorders.

* Contains the latest information on the subject of neurodegenerative disorders
* Reflects on various factors involved in degeneration and gives suggestions for how to tackle these problems.

http://www.amazon.com/gp/product/044...=pe_pe_snp_091

Yours for only $170.00 and most likely a better mind than my own in order to comprehend it.

Mike

Hi Everyone,

http://www.inaf.ulaval.ca/docs/Ramassamy.pdf

I haven't gotten a chance to read it yet. But it appears to be worth looking at. Hugs, Roz

Roz has pointed an interesting little slide slow presentation. This may or may not be related to the RSD disease process, but it's definitely worth checking out in some level of detail.

Attention all of you budding molecular biologists, if we could just have your atttention for a moment . . . .

Mike

Well, all I am officially un employed. I do not need to work, as my husband was in Vietnam and is on 100% disability from that agent orange our government sprayed over there. I too loved my job. I cried buckets too over not being able to go back! I took care of altizmers patients in their homes.. I miss it. Love, Desi

Vicc
 

Vicc

My main question about cyanosis to you is...

does it have to be blue? Since my hand turns red to red purple or red burgundy... I was wondering if this is NOT cyanosis to you, and if you need to have cyanosis to have RSD. I don't need a long explanation... just simple yes, no for now. I am very puzzled by the cyanosis compared to RSD, as many people seem to be like me, and do not turn blue or blue gray.

And, remember..... who knows what sort of spread I may have had without the grapeseed. There is no way to know that.

Thanks!!

Jules

bumpity bump...

Hey Jules,

I would imagine that the burgundy colours would be cyanotic - they show a problem in circulation in that limb anyway - and the grey shading would also suggest a compromised circulation. I could be wrong but I think the less an individual is able to move the affected part the more pronounced the colour changes are eg - for me, my legs are black, BUT that's because I can't move them, whereas others who can, would still suffer with the cyanosis, but because they have the ability to pump the blood through muscle movement it would be less pronounced.

Well, that's my 2cents! - Vicc, come and correct me!!!
Love

Frogga xxxxxxxxxxxxxxxx

...falling off the page again....

Hi Bud,

Thanks for the link. You sold me on the book. :wink: Peace, Roz

Hey guys,

I've beem working on a reply, but every time I try it's just too long.

I decided to start a thread talking about cyanosis and its moving along slowly but will be finished pretty soon (whatever that means). It will answer most of the questions in this thread.

Meanwhile, be patient with me, I'm an old man...Vic

Vic
 

Thanks Vic...
Mainly, I just wanted to know if when you talk about cyanosis, if you would say I fit your discription... since my skin does not turn blue or gray, but **just** red and burgundy/purple.

No real long explanations needed right now...

THanks sweetie... and I think this RSD stuff makes us all feel old if we are or not.

Jules

Hi Jules,

You've known me long enough to know that I don't know how to write anything without long explanations. It's what I do.

Still, I am working on a thread on cyanosis, so I guess its safe to say "yes", RSD doesn't require discoloration, but it is the most common sign of the disease, so if the RSD "experts" could find their way to talk about cyanosis as a sign of this disease, life would be easier for the majority who do present with it and who are stuck in litigation.

Cyanosis is pretty strictly defined as blue to purplish, so people with discoloration different from strictly defined cyanosis could still face problems, as could anyone with no discoloration, but the majority would be able to use their cyanosis as evidence that they do, indeed, have RSD.

Today you have to prove you have RSD, and you can't use cyanosis as evidence. Remove that barrier and their lives would automatically be come better. That will only come down when a few "experts" start telling the truth.

I don't think they're going to do that voluntarily. To admit cyanosis is a sign of RSD is the same as admitting that this can't come from a nerve injury; science proved that the only possible neurological explanation for RSD doesn't exist.

It was once believed that damaged sympathetic nerves caused the cyanosis of RSD. For that to be true however, the damaged nerve would have to constrict arterial blood flow to the point that cyanosis appears; but scientists back in the 1940's proved that arterial blood flow is not reduced in RSD.

Way back then, the "experts" of the day decided that even if their assumptions about sympathetic vasoconstriction were wrong; they must be right about nerve damage. They couldn't come out and lie; they couldn't blame cyanosis on sympathetic vasoconstriction anymore, so they just stopped talking about cyanosis.

That may not have been a big deal back in the 1950's. Maybe the older material (the stuff that still discussed cyanosis), was still around and used to convince workers comp insurance companies that the patient really was disabled, but it doesn't work like that anymore.

Once upon a time, insurance companies felt obligated to pay the people they "insured", but that time is past. Today, the greater the disability, the harder they fight. Today insurance companies only exist to make a profit, and paying large claims hurts profits, so people with RSD are the enemy. We are hurting the bottom line.

Not mentioning cyanosis in the 1950's might not have been a big problem then, but it sure hurts people today. And the "experts" know their silence is hurting people, but they remain silent. Maybe someone can come up with an explanation for this silence that doesn't curse the "experts" as liars, but I can't come up with a single reason that would justify the damage their silence is causing.

So silence about cyanosis is hurting a lot of RSD people who have obvious cyanosis, but what about you and the others who don't have blue to purplish color skin?

Your discoloration isn't just a coincidence. When the area that hurts is also discolored, it means that science has to come up with a better explanation. That's their job: to explain facts. In your case, the fact is that your skin is discolored in the same places where it hurts, so is mine. The colors are different, but the fact that we have discoloration is just as real.

Real scientists would want to know whether the two are associated, and they would keep trying until they found the answer.

RSD "experts" remind me of Republican Senators; they know the boss is wrong, but they think loyalty is more important than the truth. They hope they can get off the ship before it sinks. Right now, the RSD "experts" have more time; most RSD people still believe them.

In my mind, this means I have more work to do. I have to keep bringing up this "inconvenient fact" until others decide that I may come across as an arrogant know-it-all, but their arm or leg is cyanotic, so why aren't the "experts" talking about it?

When a well-funded researcher begins investigating cyanosis in RSD, others will eventually follow, and they will explain why your skin is burgundy while mine is purple and someone else shows no discoloration at all.

So Jules, for what its worth, I have no doubt that your burgundy color means that science is going to have to find another word for cyanosis, or widen the definition to include other colors, because you are living proof that impaired circulation can present as something besides blue to purple.

Well, you got your short answer and I wrote my long explanation. Everybody's happy except those who are tired of reading my crap...Vic

Thanks Vic
 

Thanks Vic

Interesting..... perhaps we will one day find that there is something that causes the red/burgundy color.... and that it may or may not be different than what causes blue/gray

It seems to me though, that when I think back about what I have read, in general, about RSD, that the discolorations mentioned have included red or purple and not as often mentioned blue or gray. I'll have to keep that in mind the next time I go on a seek and search through the old info again. Maybe since my colors "go to red" that is what stuck in my memory.

One thing .... my color is much better after switching from clonidine back to Norvasc (my old blood pressure med... switched to clonadine when they diagnosed RSD) My hand has been close to normal temperature almost constantly since a few days after I switched. Before that I was wearing a glove most of the hours of the day. Might be something to try if anyone is using clonadine and not getting any help from it.

Thanks again Vic...
;)
Jules

I know this was written awhile ago but you are so inspirational to me. I hope you are still doing well. I am using the grape seed extract but not noticing any improvement but maybe it's stopping it from getting worse?Thank you. The story of your half sister having RSD very interesting if there is a possible genetic link. Hugs and Peace

This IS an old post.

Sorry to say, I have continued to get worse with time.

Massage no longer helped so I stopped going. I do still see Dr. Dews once a year or so, but there is mot much she can do. She recommends ketamine, but I cannot afford what my insurance won't cover.

I now have peripheral neuropathy too. And, the neurologist thinks this has all gone to central pain syndrome. Who knows.

I was in a car accident in Nov. of 2009. I became much worse after that. The constant headaches I have had for over three years have become almost unbearable, yet no one can find a cause other than saying it is "just your RSD"

3 weeks after the accident my employer let me go from my job. After going back to all my doctors to see if there was anything else that could be done, I filed for disability. I got it with no lawyer, on first try, so that told me the time was right.

The last year I was working, I was training a young Border Collie to help me. She came out of a prison dog training program. I should say that before I was injured and got RSD, I showed dogs in obedience for 30 years, so I was a pretty good dog trainer. Josie was carefully selected, and at 6 months old, and growing up in the prison, she had a good foundation. Now nearly 3, she has become a great service dog for me. Training your own service dog is a lot if work! But having a service dog if you have RSD is great, and I would encourage anyone here to apply to a service dog program to see if you can get one. The wait is often several years.

Now that I am not working, life did not get easier. I have to be careful I don't just lay in bed all the time! I get to stiff! But, when the weather is bad, it is nice to think I don't ** have to** go out today, I can wait a few days if I need to.

It has been 11 years now. :eek: in some ways, the RSD is easier to live with. Those horrid electric shocks are not as bad. But, it is in every limb, in my face, my jaw, and these blasted headaches.

I think the worst thing though is living with the lack of concentration and loss of being able to learn things easily. I can't even keep bills paid (I do all I can by auto payment) or checkbook balanced. I used to love to read... Can't concentrate to enjoy a novel now.

Not much of an inspiration now, am I?

But, I plug along every day. My elderly Mom lives with me. I cook a meal for us each day. Might not be much...but we have to eat. Some days that is all I do. On good days I might do some dusting or go to the grocery or take my dog for a little walk.

I sure miss Vic. Miss the 3 hour phone conversations, the 20 emails a day, the great advice, and totally wish he was still around to dish out the information he was so passionate about.

Miss you buddy!:(

Allen, I am sure Vic would love to hear about you trying to find BigFoot!

I miss him too. When I saw this post, it brought back a flood of memories.

Juli