Hi Amber,

I expected flak when I wrote that, but not a sense of outrage: I think you are VERY wrong in what you said that if you have hot RSD that you prob dont have it..how can you say that when alot of us on this board have this same stuff going on.. and tell it to a newbie too... come on!!

I qualified my conclusion several times, making it clear that I was offering my opinion and that my opinion reflects a bias that isn't shared by many here -- yet. I'll keep trying to push my view because I think people will get better if they only take the time to learn a little bit about ischemia-reperfusion injury (IRI). I can't think of a better way to spend my time and energy than preaching this gospel.

It's ok to offer an opinion here, and when someone disputes it, I see that as an opportunity to clarify what seems to be in dispute. The European trend toward talking about warm and cold RSD isn't all that rigid; some authors talk about the warm/cold RSD you describe, but its pretty obvious that while this does exist, the majority who talk only about warm and cold RSD are probably including the warm/cold group in the group they refer to as cold.

By saying that the bottom line is that all of us have "cold" RSD. I was putting myself among those who believe that when RSD turns cold, it enters a new and much more difficult to treat stage; that even if one alternates between warm and cold, it is the cold that defines this new stage.

I mentioned cyanosis and pain as other "really important stuff", and could have added allodynia, impaired hair and nail growth, and to a somewhat lesser degree, patchy osteoporosis and hyperhydrosis to that list. The more of these symptoms you have, the greater the possibility you have RSD. When some of them are missing, the likelihood that it is RSD goes down.

I also pointed out that there is pretty much universal agreement that treatment during the first six months seems to offer the best chance for a successful outcome. A significant number of people report the onset of cold RSD, allodynia and the real burning sensations some time between the first six to twelve months, and the literature about the onset of cold RSD places it in about the same time-frame.

This could all be coincidence, but I don't think it is. I don't think so because my research has convinced me that RSD is an IRI, and this is exactly what one could expect of an IRI to skeletal muscle. I can't prove this; if I could, I wouldn't need to because I could post the research that proves it. All I can say is that it is much more likely that this is an IRI than it is a nerve injury.

Most of my recent posts involve showing how IRI explains every sign and symptom of this disease. And there are researchers who now write that RSD may be an IRI; just a tiny handful, but at least I'm no longer completely alone in saying it.

I decided to introduce the idea that people with RSD request a consult with a vascular surgeon partly because that is the specialty of the researcher who started me down my trail of discovery, but mainly because I think a few or them might get interested enough in the cyanosis to try to get to the bottom of what is obviously an ischemia. They seem to me to be the most likely candidates to connect the dots between these "two" disorders and break that news to the RSD world.

My doc said that its all bc of the RSD and it being controlled by the brain. I thought that idea had been totally discredited. You don't find much about it in the literature of the past 3 to 4 years, as the majority of the "experts" now seem more intent on finding it in the spinal cord. The idea that the brain played a major role was held by those who believed that the problem originated with damage to sympathetic nerves, and somehow the brain is/was reacting to misinformation by sending out bad instructions. There never was any objective evidence that this was/is what really happens.

If I were to pick "a total trademark of RSD", it would be cyanosis. That is (or damn well should be) a neon sign saying "vascular dysfunction". Except for RSD, cyanosis is something that must be reversed. They don't know how to reverse it in late stage diabetes, but they are trying to prevent/delay/reverse it because it is a sign that something is seriously wrong.

But unlike diabetes and Raynaud's Syndrome, RSD only rarely results in gangrene and amputations, so the "experts" have felt safe in ignoring it, and that's one of the few things they seem to do really well. They have been ignoring it for about 60 years now; ever since researchers proved that sympathetic vasoconstriction is not a factor in this disease or the cause of our cyanosis.

The "experts" back then chose to cling to the belief that someday the link between RSD and the SNS would be found, and they would ignore cyanosis until then because their neurological explanation just went down the toilet. I'm sure they thought that the proof would appear any day, but they're still waiting; and no one talks about cyanosis.

One reason for this reply is that I know I will never be able to explain all of the seeming contradictions of RSD. Anyone wanting to tackle that job is welcome to it. I think it is more important to focus on the similarites between RSD and IRI: Like the fact that both begin with a physical trauma.

It's unfortunate that the docs who know about IRI are mainly thoracic surgeons who will probably never see an RSD patient, and will never learn that cyanosis is the trademark of this disease. That's the one clue that might get them interested in looking into RSD.

I gave Steff my plainly labelled personal opinion about whether I think she has RSD, and I don't think that many here have gone further than I did to qualify my answer in so many ways. I am grateful that NT allows everyone to offer their opinion so long as is stays within the TOS. I believe I did that, and that my answer to Steff's question is founded upon sound science.

Steff, hijacking is taking a thread that talks about one thing and redirecting it to an entirely different topic. The reply I saved for another time contained a lot of what I just wrote in my reply to Amber. It has little to do with the question you asked and would have been inappropriate in a reply to you. It's not polite, but I have a habit of doing it.

It isn't hijacking when I put it in a reply to Amber, or if it is, everyone does it; threads here can meander in all kinds of directions and end up having nothing to do with the first post on them. That's just one more reason why NT is so interesting.

I wish I could offer some idea that might help you find your answer, but all I know about pn's is that some docs think that's what RSD is, and I think they're wrong.

I know I speak for everyone here when I say you're welcome to make this your NT home. We're pretty broad-minded here, and we know that pain is pain, no matter what the cause. Sometimes it hurts so bad we need to talk about it to others we know will understand. We understand. And we talk about other parts of our lives besides the RSD.

In fact, since my disabling pain comes from nerve damage in and at my spine, some could argue that I should be at the spiney or chronic pain forums. I do have RSD, thats been confirmed by a dozen docs, but mine is relatively mild. I suspect it is so mild because my "real" disabilities have limited my activities so severely that I never had a chance to really aggrevate the RSD, but I'll talk about that some other time.

Hoping you find your answers...Vic