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Vicc is this what you have been telling us
I just finished reading a book " Understanding chronic pain" The Dr. that wrote it states that RSD comes from an injury that recruits the autonomic nervous system, the subcortical apparatus dedicated to the control of blood flow , into misbehavior . Blood vessels constrict . Muscles wither and contract. Bones become osteoporotic, and skin glossy, atrophic and cold----The most visible effect is reduction in blood flow and with it extravagant pain.
Vicc, is what this Dr. wrote what you have been telling us all along or has brain fog confused me again? I want you to know how much your research and caring mean to me, thank you for always standing up to your beliefs. I pray for a pain free passing for you surrounded with love of family and friends, as we will be there in spirit.:grouphug: You will be greatly missed!!! |
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Hi carose, I would have respected him if that doc had had the guts to admit that --The most visible effect is reduction in blood flow means cyanosis We know our skin is cyanotic. It's just a word, but it's a word the RSD "experts" never use. They know that "autonomic dysfunction" doesn't cause cyanosis, but they want us to think that it does. None of our nervous systems can cause RSD, and our blood vessels aren't constricted; our capillaries are plugged and destroyed, and that isn't the same thing: The kind of cyanosis we have can't be caused by constricted arteries (if it were, our cells would have died and rotted, and we would have died from gangrene). I can and will prove that in a future post too. If that doc is right, RSD is hopeless, because docs can't fix nerve damage. They never have been able to. If I'm right, this disease is treatable and remission is possible; there is a way to replace capillaries. My next posts will show why nerve damage can't cause RSD; that plugged capillaries explain every sign and symptom of this disease; that hyperbaric oxygen (HBO), delivered properly, can lead to remission, but that the way most chambers deliver it (too much oxygen, delivered too often), poses an unnecessary risk for us. I'll show that something can be done to replace destroyed capillaries; that hyperbaric oxygen (HBO) stimulates something called VEGF, and that is essential in the body's process of growing new capillaries. But HBO can only help the body heal itself; it can get oxygen to our cells, and it can stimulate VEGF, but it can't provide remission unless it works with our natural healing process. (That sounds like a lot of work, but most of those posts have been written for months, but I wasn't strong enough to face a repeat of the last time I tried). Now that I know my future, I know I have to try one more time. You said, thank you for always standing up to your beliefs.and I hope you mean it, because that is exactly what I plan to do. I can't think of any better way to spend my time. I hope these posts will convince you and others that I really do know what I'm talking about. A lot of people tell me that what I write makes sense, but I haven't put it together well enough to convince them; I hope I can do that this time...Vic |
Hi again, carose,
Looking back over my last post, I realilze that I said a lot about what I'm going to say, but never got around to explaining exactly why I disagree with this author. I have to begin by saying that doctors don't research RSD; they are busy treating patients with a wide variety of disorders, and they don't have the time to thoroughly investigate all of them. Even pain docs who routinely treat RSD patients don't see enough of us to justify hundreds of hours of research. They relied on PubMed and Medscape when they first learned of this disease. This particular doctor probably learned about RSD before 1999. Until about then, the literature was full of talk about the SNS. That is about the same time I began researching this disease, and I found the kind of stuff he wrote. He wrote, RSD comes from an injury that recruits the autonomic nervous system, the subcortical apparatus dedicated to the control of blood flow , into misbehavior . From 1916 until the late 1940s, everyone in RSD agreed that damage to sympathetic nerves caused them to abnormally constrict arteries until blood-flow was so reduced that the limb became cyanotic because the arteries themselves were so oxygen-starved that they were leeching the O2 out of the blood before it reached the cells. Then someone invented a way to measure arterial blood-flow, and someone else measured it in RSD patients, where they found that the SNS is not constricting arterial blood-flow at all. Something is causing our cyanosis, but it isn't the SNS and it doesn't involve the arteries. From the 1950s to the late 1990s, most RSD experts stopped talking about cyanosis, because they couldn't explain it anymore, but they obviously clung to the belief that the SNS must somehow be involved, so they talked about the SNS being somehow "recruited" by another sort of nerve damage. Translated, that means: "We're sure that someone, someday, will find out what the SNS is doing wrong. Then we can stop pretending that cyanosis doesn't exist in RSD". The reason I think he learned about RSD before 1999, is that in 1995, a consensus of the International Association for the Study of Pain (IASP) rejected the SNS hypothesis. In order to leave no doubt about it, they renamed the disease CRPS, which has no sympathetic connotation at all, It took a while, however, for CRPS to replace RSD, and for the "experts" to come up with a new neurological explanation for this disease. It wasn't until 2002 before someone came up with a new hypothesis, so the sympathetic view still pretty much dominated the literature for another few years. Had he begun reading about this disease after 2002, he would probably have explained it in terms of central sensitization (CS). Today, just about all of the RSD "experts" have joined the CS parade. So, those of you whose docs still talk about the SNS just aren't keeping up with the times. They still believe the nonsense that was taught until shortly after the IASP completely rejected it. Those docs probably haven't read anything about the disease since before 2000. Lest anyone think that I agree with the CS view: It only tries to explain pain in RSD; just like the "experts" from the 1950s until the1990s pretended cyanosis doesn't exist. the "experts" today pretend that osteoporosis; hair and nail growth; skin lesions, and, of course; cyanosis, don't exist. Spinal cord dysfunction can't explain these things. On the bright side: I rarely agree with RSD "experts", but we all seem to agree that "autonomic dysfunction" as the cause of RSD is balderdash...Vic PS: I started using a larger font because my vision is failing too. |
The autonomic nervous system is responsible for a huge number of very complex functions in the body and brain. It is responsible for homeostasis. Temperature control? Yes. Perspiration? Yes. Blood vessel diameter? Yes. These are all functions that are thrown into dysfunction by RSD/CRPS, so how could this system not be involved? And yes, the Sympathetic nervous system is a division of the ANS. No one has "thrown out" the idea that RSD/CRPS is caused by autonomic dysfunction. Central sensitization is just the mechanism by which this dysfunction takes place. It is an explanation at the level of neurotransmitters and receptors for how this dysfunction occurs. (I direct your attention to a recent article http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum
Also, many of the treatments that are used for RSD/CRPS are directed specifically at the sympathetic nervous system. Blocks? All of these injections are put directly into the dorsal ganglia of the sympathetic chain. If the sympathetic nervous system were not involved, why would these blocks, and spinal cord stimulators be so successful in treating this condition? Also, I find it strange that you readily endorse research and theories that were developed between 1916 and 1940, but you seemingly refuse to accept the changing and evolving face of research that has taken place beyond that date. And current research does address skin and nail and bone changes that accompany RSD/CRPS. (Check out journals of dermatology and bone.) Osteolysis (the destruction of bone cells) is a huge subject in current research and you can't just dismiss such research out of hand because you disagree with it. Technology changes exponentially each and every year, and there are some really great reasons why the theories of 1916 aren't still in favor. Scientists didn't even know what germ theory was back then! We had no clue about neurotransmitters or anything . . . And quite often, color changes in the periphery are due to vasocontriction brought on by autonomic changes in temperature regulation. The inability to properly regulate temperature comes first, and then the limb that appears "cyanotic". It is not happening the other way around. If it were, people would be losing limbs, as happens in the true cyanosis that is seen is diabetes or clotting disorders. Just one more point, the central sensitization theory is not just a theory about the spinal cord- it is about a process that is happening in the brain too. It starts in the peripheral soft tissues and then recruits neurons in the spinal cord and brain. I know that sometimes it's easy to think that all of these systems are separate. But the unifying theory about it all is that the brain always has the last say. Whether it's the immune system, cardiovascular or motor- the brain controls it all. |
Reply
Hello again Linnie,
Its beginning to look like we disagree about a lot of stuff, but my wife and I disagree a lot too. but she still says she loves me, so I guess disagreements don't always make enemies. I disagree with you, and here's why: Para 1: The abstract by doc S, et.al., makes it sound like he's a molecular biologist too; I would like to see some research supporting his claims, but he doesn't cite any in the full article either. I think he's making that stuff up. Para 2; Research has shown that injection of norepinephrine below the site of a sympathetic block results in instant pain [1]. A ton of research has shown that adrenaline levels aren't high in RSD. This means the most logical reason why blocks work is that they block normal SNS activity, and they stop working when the brain finds another way to route its messages. And blocks always stop working. Also, spinal cord stimulators have been shown to stimulate production of GABA at synapses, and to interrupt organically-caused pain messages (such as Diabetes and Raynaud's syndrome), but one shouldn't assume it also affects sympathetic nerves, unless tbere's research confingming that, and I've never run across any. Para 3: I don’t endorse LeRiche hypothesis (which he later renounced), I was reporting what all the “experts” believed. In the 1940s, when they learned they were wrong, they just started mumbling “sympathetic dysfunction”, without ever showing evidence that it happens in RSD. Then, soon after the IASP totally rejected sympathetic dysfunction as a cause of this disease, the “experts” stopped talking about the SNS completely. Now they talk about the brain and the central nervous system doing everything. But they don’t offer any research at all showing how the brain is doing it. They cite research into CS and apply it to RSD, but the CS hypothesis is only intended to explain pain when no disease process is present. Cyanosis is a disease process, so CS doesn’t apply. And I don’t have time to skim through all those journals, so why don’t you cite a couple so I can take a peek. As I said, I don’t espouse LeRiche, nor am I stuck in 1916; I’m stuck in 1964, when ischemia-reperfusion injury was discovered; they didn't know about it when Mitchell diagnosed causalgia 100 years earlier. I think I'm "modern". Para 4: It’s true that the SNS usually controls vasoconstriction, but as I pointed out earlier, research has shown that sympathetic vasoconstriction is not a factor in RSD [2]. Also, I would like to see any research at all into cold sensation in RSD. You say it always come first, followed by cyanosis, but I have never seen that claim before. The “experts” won’t talk about cold pain and never ever mention cyanosis, so I I’m not sure where you could have read this.. Also, if you had read my posts on IRI, you would have seen that in IRI, the cyanosis is the result of plugged capillaries. The fact that our limbs remain cyanotic so long is proof that it isn’t sympathetic vasoconstriction; if our arteries were so severely constricted (and not even arterial blood clots cause such severe cyanosis), gangrene would result. Paras 6 and 7: I know one thing the brain doesn’t control. It doesn’t control what a white blood cell (WBC) does when it encounters a pathogen in a capillary. DNA controls that. In fact, DNA is a 100,000 page owners manual that tells the cells everyting they're supposed to do (from converting glucose into energy to dividing), without the brain doing at all. DNA tells the WBC to do, and it tells every cell what it should be telling other cells (and they do talk to each other). DNA tells the body how to end the immune response too, and 99.999% of the time it works. When it doesn’t end properly, it’s called IRI. I injured my foot and it turned a bright (maroon) red, and then bright, splotchy cyanosis. IRI has an explanation for that. People like doc S tell us stuff that no one except a microbiologist (or something) could possibly understand; and perhaps argue against. He talks about it, but he doesn't cite any research; we're supposed to just believe him. Central sensitization is meant to offer a possible explanation for chronic pain (pain with no other discernable cause – mostly low-back pain). It was never intended to explain any pain with an ongoing disease process; and cyanosis is an ongoing disease process. You apparently want to believe our brains somehow take over from a physical injury and then causes physical symptoms; I want to believe that a well-understood disease process that explains every sign and symptom of this disease is responsible. I hope others decide to find out who's right. I write about (and debate), RSD because I believe that anyone who listens to me will eventually see that it all makes sense. The biggest barrier to understanding RSD is that we talk about cyanosis here, but the “experts” never mention it. If I can get someone to understand why cyanosis is so important, they may be willing to learn something about IRI. So I won’t mind if this turns into an exchange of abstracts. Anything to draw a crowd…Vic A [ ] with a number inside means I will email you a copy of the abstract 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. |
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Linnie, I guess like me you know that the majority of people who have RSD.CRPS have TRANSIENT cyanosis mixed with some pale times and some very ruddy times. I meet and mix with many people with RSD/CRPS and their main complaint other than pain is the constant changing colour of their skin. Of course this is indicitive of autonomic/sympathetic dysfunction. There seemingly are some people who may have constantly cold and cyanotic skin who have RSD/CRPS but I am sure they will also have peripheral vascular problems due to problems such as diabetes or from a history of heavy smoking. Cheers Tayla:hug: |
My experience
I'd like to share some of my experiences with RSD, which I've had for 7 years.
For me, it started suddenly when my hand became swollen, turned dark purple, felt icy cold yet was sweating. The pain was in my arms - I don't remember the color or temp of my arms though. I had off/on body sweats all day, all night. Sipping on a hot drink, such as herbal tea or warm lemon water gave me instant hot flashes as did any sort of exertion, such as bathing, getting dressed or turning over / changing position in bed. By the time I got to the doctor that same day, the cyanosis & swelling disappeared, but not permanently. I'm glad you mentioned the transient color changes, because the AMA does not agree with this and it is what happened in my case. The AMA causes a lot of people grief as they say all 7 or 8 symptoms must me present at one time and continuous. Blocks helped with the swelling and color changes to the point they were red or red with white dots instead of purple / cyanotic and temporarily warm. Most of the time when I saw a doctor the color was pale pinkl which I attributed to adrenalin improving blood flow as after the doctor visits my hands would be cyanotic or if I'd had a block recently, they were red or red/white. Therefore, doctors rarely documented the cyanosis unless it was my primary treating doctor as I was comfortable there, so minus the adrenalin factor. After 5 years, the color changes were rare; swelling was almost always present however. Fast forward to surgery for an intrathecal pain pump implant. Clonidine was added to the pain medication which I'm sure is what helped decrease the hot flashes/sweats. It wore off with time...until the dose was increased. Hot drinks & exertion still caused /causes soaking sweats leading to chills & goosebumps. The swelling has pretty much disappeared. Now the cyanosis is positional, meaning if my arms hang down, my hands turn dark purple / cyanotic and icy cold. Up in my lap, my hands soon turn very pale & remain still cold. My arms and hands are wasting but one is quite a bit smaller than the other which wasn't noticable prior to RSD. (I had exams for something else). By the way, the pump has done a lot to relieve the hot, burning skin (pain). This is just my experience. I have no explanation why my hands are only cyanotic when they hang down but I'd appreciate any thoughts. :hug: Hope p.s. I made this a size larger Vicc. I hope you can see it ok. :) |
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Hi Hope, I am the same as you, I only have cyanosis when my limbs are in certain positions, more often they are bright red and blotchy. The reason for this I think is that our extremeties are furthest from our heart and they are the last place that blood visits on it's way back to your heart. If you have sympathetic dysfunction it makes the job of maintaining a healthy flow just that bit harder as the vessels constrict and dilate. This transient cyanosis indicates there is no permanent damage to the microvascularity as there would be no filling of those vessels at all and cyanosis would be permanent. This is the reason so many people have success with blocks that go into sympathetic nervous system as they cause vasodilation and improved blood flow thus improvenment in temperature. I have an Intrathecal pump too and it has been a godsend for my upper body pain and other symptoms. I am so glad that you are getting relief too. I realise it is quite invasive surgery but I have no doubt I am only here today because of mine. Take good care Tayla:hug::hug: |
Hi Hope,
I plan to reply to your post, but something has come up that may result in my no longer being allowed to post here at NT. If it is satisfactorily resolved, expect my reply shortly...Vic |
Vicc you are such a wealth of information. I truly hope no one keeps you from being allowed to post here. It would be a tragic loss to not allow you to post. Your information and your thoughts have really helped a lot of people understand RSD.
Hugs |
Bumping up the original post - to help keep on topic.
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Hi all,
Fortunetly I don't understand any of the things you guys are saying to put in my 2 cents worth. I do want to say one thing, I do agree that Drs. are not seeing enough patients with RSDS for enough research to be done on it.
I see people on the same meds we are on that has back problems and other problems and with RSD it doesn't seem like any med we take is strong enough to keep the pain in check. My Dr. in his almost 30 years of being a Dr. has only had about 4 patients he says with RSD. At this time, I am the only one he has, of course he is just a PCP and Sports Medicine Dr. but even pain Drs. I think get all kinds of other medical problems to deal with more so then RSD patients. There aren't many Drs. that specialize in RSD either. I know there is some research being done but I don't believe it is enough. Ada |
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Ada, Aren't you seeing a Pain Management doctor? My doctor who is a Pain management doctor has 112 patients with CRPS/RSD on his books at the moment. Truly, if anyone has this puzzling disease I really recommend that you see only a doctor who specialises in pain management who just has to have seen and treated many patients with RSD/CRPS. Hope that things are settling for you Ada Take care Tayla:hug: |
Are Toxic Oxygen Radicals Involved in the Pathogenesis of RSD?
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Hi Sandel,
I would be interested to see if these people have any updated study as I notice the date is 1987. I have tried to access by googling Netherlands and CRPS and can't find anything. As always you are wonderful at finding what is out there for us to read so I am sure if there is something you will find it. It really is quite reasonable to think there is some inflammatory process that in turn affects the behaviour of the sympathetic nervous system. If we could only establish the trigger then we would be so much closer to finding the way to prevent it ever happening. Cheers and thanks again for all your research Tayla:hug: |
Hi Sandra,
I took the liberty of replying to your post on this thread: http://neurotalk.psychcentral.com/thread39478.html as you discuss the author of this article, and the subject of inflammation, in much more detail there. Hope you don't mind...Vic |
Hi again Hope,
I am working on my reply, but in order to be as thorough and accurate as possible, I had to go back and find some of the research I began collecting more than ten years ago. Back then I didn't bother with a filing system, I didn't think I would need one, but I never expected to end up with almost 2,000 abstracts and articles. In that past I've admitted that I desperately need an editor, but I could use a secretary to clean up the mess I've made, too. Please be patient, and thank you for the larger font. It's much easier for me to read...Vic |
Hi Tayla,
I have been to 4 PM Drs. and they did nothing for me. My PCP sent me out to them and they were useless. I won't even give my opinion of most of them.
Your Dr. might be seeing 112 RSD patients right now but that is 112 out of how many people in this world today. The one PM Dr. that comes to mind around here takes care of people with neck problems, back problems, and RSD, Fibro. I know a lot of people that have gone to him and he's a pill pusher and knife happy. He has lost his license once and even practiced while they were lost. I saw 3 at the U of C. One I liked but he left, the one was young and knew nothing about RSD, the 3rd was a joke. We use to have a girl on here that went to him and he messed her up to the point of a lawsuit. I can't think of her name right now. She lived in Fort Collins. I saw one in the Springs, he handed me meds and that was it. Didn't recommend anything else. I had a hand surgeon that knew more about RSD then the PM Drs. I have seen. My Dr. got me the blocks, the PT, the meds, and read up on the RSD to take care of me. I'm ok where I'm at. He will give me anything I want for pain also and send me out anytime I want to go but I just got sick of trying to find a decent PM Dr. I have my Neurologist, Urologist, Gynocolgist, TOS Surgeon, Hand Surgeon and all of my other specialist I need. I am most likely in better shape today then a lot on here who have PM Drs. I don't think that there are enough RSD people out there that makes the government push research enough. Thanks for caring though. Ada |
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Ada, My point in telling you that my PM doctor has 112 RSD patients was to show that it is NOT an unrecognised disease---well at least here in Australia it isn't. My doctor is only one of at least a dozen Pain Management Specialists and teams who treat RSD in my city of 2.5 Million people. Medications form just a small part of our treatment that includes, blocks, ketamine and magnesium infusions, physiotherpy with graded motor imagery and mirror therapy, psychology, hydrotherapy and Hyperbaric oxygen therapy. For those who do not respond to these then there are SCS and Intra-thecal pumps.The rationale is of course to diagnose early and prevent the disease ever getting this far. Any doctor who calls himself a Pain Management specialist yet doesn't know how to treat RSD needs to be struck off the register as RSD patients account for a large percentage of patients who need help with pain.:eek: My suggestion to anyone when you get referred to a doctor for treatment of this disease, is to not even set foot in their door until you have details of how many RSD patients they treat and how they do it---You are wasting your valuable time- and perhaps your ability to get better--just as you seem to have done Ada:( I struggle to think that other developed countries are not as well versed in this disease as we are here in Australia. We are a small country, certainly a smart and economically sound country,but our doctors travel the world to learn about RSD/CRPS. The last conference was in Boston and the one before in Berlin, I am sure there must have been more American doctors there than those from other countries. My doctor went to both and he came back with all the latest treatments for RSD/CRPS as well as being educated in the latest research. It is there for those doctors who want to learn.:( I don't know what can be done to initiate interest over there---I am very, very sorry if it is as bad as it sounds from a large number of people here at NT who have shared their story. Thinking of you Tayla:hug: |
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thanks to all for co-operation Cheri thanks |
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