cyanosis

Bronco4586 · 04-22-2007, 03:34 AM

Does anyone else have cyanosis that comes and goes. I have lots of pain that comes and goes but I dont always have cyanosis when the pain is here. I do know that I had a nerve block done on Wed. and my right leg was ice clod to the touch and my right leg was warm. But I didnt notice any color difference. I also notice from time to time that my right leg looks shiney..... Any Ideas??

What do you think Vic?

04-22-2007, 12:41 PM

Hi Dana,

Good post! I don't think I have cyanosis, or hardly - if that is possible. The back of my hand has gone a bit greyer than the other, so perhaps that's it; but I have very dry, very thin skin which is often extremely glossy. I've had RSD for 3 years, left hand and wrist, which was hottish and red until a year ago, then it started looking like it belongs to a dead person.

Never goes blue, purple or black, like some people have to endure.

But the palm of my hand is quite red and mottled at the base, and there are permanent red spots there - not a rash, it just looks like one, though not raised or separate in any way from the surface. Looks like the red spottiness is below the surface, sometimes it's very noticeable indeed. So...I dunno! I'm a mixture!

I bet you'll find most people do have it if they've had RSD for any length of time.
Thanks for posting this,
all the best

trix · 04-22-2007, 12:49 PM

I am very new to RSD, and I am currently in the swelling, heat and redness stage. That being said I do very occasionally develop cyanosis. Usually it is after a flare of the swelling and heat recedes, I will get cyanosis, which will then go to reveal a more or less "normal" color and temperature.
Tracy

Bronco4586 · 04-22-2007, 06:36 PM

Quote:

Originally Posted by Vicc

I'm probably burning a bridge and certainly about to **** some of you off, but the words in this thread have triggered too many things in me that I've kept inside for too long.

First, setting the scene, I am gaining weight but am still getting weaker and even less able to sit even slightly upright to type; in addition, I written the words so many times in the past six years I'm tired of writing them, but I am working on writing articles for a website in order to explain this disease to a wider audience than one forum. As I see it, a website is my last chance to make a positive difference in peoples lives, and I don't think I have much time left to do it.

Now, what about this thread? What is it here that has led me to break weeks of silence? The main thing about it is that I'm so ****** at every "expert" who writes about RSD and lies by ommission every single time they do. They are lying because pain may not have a color, but RSD certainly does.

The color of RSD is the blue to purple of cyanosis. The vast majority of patients with RSD have cyanotic skin that clearly delineates the areas of pain, yet you can search the literature in vain for the word cyanosis. There is absolutely no excuse for the fact that this word isn't mentioned, but there is a reason doctors won't mention it:

There is no neurological explanation for cyanosis. None. If the experts were to use the word cyanosis they would have to admit they have no idea how nerve damage can possibly cause it.

Yeah, there is a neurological explanation for cyanosis, it is called abnormal sympathetic vasoconstriction; it was THE explanation for this disease, beginning in 1916 and lasting until the late 1940s. Everyone who knew even a little about what was still called causalgia during that 30 year period knew that it resulted from damage to sympathetic nerves; that those damaged nerves caused the smooth muscle that surrounds every artery to contract to the point that blood flow was so severely reduced that the cells couldn't get adequate oxygen and nutrients and so couldn't function properly.

Nerves need oxygen and nutrients just like every cell, and when they aren't getting enough, there will be problems; problems like severe pain.

No one doubted that abnormal sympathetic vasoconstriction caused causalgia, NO ONE. They not only knew the cause, they also knew the cure: the surgical sympathectomy. Nearly everyone diagnosed with causalgia who could afford it had a sympathectomy.

Then science stepped in. In the 1940s, medical technology had advanced to the point when arterial blood flow could be measured. I'm sure every physician familiar with causalgia waited with eager anticipation for the final proof that sympathetic vasoconstriction reduced arterial blood flow; and they were stunned by the results. Study after study proved that arterial blood flow is not constricted.

Causalgia patients with one limb affected had both limbs tested. And arterial blood flow in affected limbs was equal to, and sometimes greater than that in their unaffected limbs. Arterial blood flow was the same in causalgia patients as in controls. Damage to sympathetic nerves did not cause causalgia and it does not cause RSD. Nor does it cause CRPS.

What did the causalgia experts in the 1940s do with this incredible information? They renamed the disease reflex sympathetic dystrophy (RSD). That's right, AFTER they knew that an abnormal REFLEX from a damaged SYMPATHETIC nerve did not lead to DYSTROPHY (a word pertaining to arterial nutrition), THEY LIED.

Those guys are all dead now, so they can't defend themselves, but if you go back and read a couple thousand abstracts from the RSD literature, which I did (it took me four years of researching this disease before I ever wrote a word about it), you will find the same facts I found: After science proved that this isn't reflex sympathetic dystrophy, the experts told the world that it is.

Then the other scientific shoe fell: The surgical sympathectomy did not cure causalgia/RSD; it relieved the symptoms for a couple of years, then they came back. They didn't come back gradually, they came back all at once and they came back full-tilt. "With a vengance" is how many people described it.

And the experts said that symptoms returned because the nerves "regrew". And they were lying. They knew it for two reasons: First, the symptoms returned, but the other damage from those sympathectomies remained, and; second, if nerves had simply "regrown", another sympathectomy would have stopped the symptoms again, and they didn't. They knew the sympathectomy only provided two years relief, that 2nd sympathectomies didn't work and that patients suffered from circulatory deficits after sympathectomies, but the experts continued performing the surgeries for another 50 years; damaging countless people.

Oh, one other thing happened in the 1940s. The word cyanosis faded from the lexicon of RSD. Before those blood flow studies, everyone used the word when talking about major symptoms of causalgia, but afterward, the word disappeared. The word disappeared for one simple reason: The only neurological explanation for cyanosis had disappeared.

This is why I talk about cyanosis so much; because there is no neurological explanation for it, and since its the most common visible and objective sign of RSD, the fact that nerve damage can't explain it is proof that nerve damage does not explain RSD.

We all want to believe our doctors know what they're talking about and that they have our best interests at heart, so how can they tell us its nerve damage when they know it isn't? Are our doctors lying to us? No, they're not.

Every doctor in the world knows that nerves simply can't do what the experts say they do in RSD. (My website will have an article explaining nerves and nervous systems; I've studied them in depth, not only because my primary disabilities are the result of nerve damage and I wanted to learn as much as possible about them, but also because what I had learned was enough to prove to me that nerve damage doesn't explain RSD. So I learned even more about nerves so I could explain exactly why they don't cause this disease).

Your doc knows nerves can't do what RSD experts say they do, why doesn't your docs tell you that? He/she doesn't have a better explanation. From 1863 (when causalgia was discovered), until 1963, (when a disorder called ischemia reperfusion injury was discovered), there was no other explanation. Your doc probably never heard of this new disorder, and she/he certainly doesn't know as much about it as I do. Your doc hasn't read hundreds of abstracts explaining the disease; I have.

If the physicians who actually treat RSD really believed that it is the result of nerve damage they wouldn't try using meds that have nothing to do with nerve damage. In my research of the literature about this disease, I have read published case studies claiming success with a myriad of meds: calcitonin, vioxx, etarnacept (enbrel), multiple antiinflammatories, etc. The list goes on, but I'm citing from memory and too tired to look up all of them.

So, our docs may not believe its nerve damage, but they don't have any other explanation, so they don't tell us they're clueless. They are doing what they can to help us, most of them are, which is to provide symptom relief. It's all they can offer. If your doc isn't doing that, get rid of him or her.

So we have cyanosis, which can't be explained by nerve damage, and "experts" who won't mention the word because they would be admitting they are wrong in claiming nerve damage. How does that affect us?

Try to imagine a world in which cyanosis is the first word on every list of signs and symptoms of RSD. You're in pain and you go to an ER for something for the pain; the doctors and nurses look at you like you're a junkie and you tell them you have RSD but they've never heard of it. You suggest they look it up online and they find cyanosis, severe, intractible pain and a bunch of other stuff; they look at your arm or leg and see cyanosis. WHAT ARE YOUR CHANCES OF BEING TREATED WITH RESPECT AND GIVEN THE CARE YOU NEED? They are a hell of a lot better than they are today.

Every "expert" who writes about RSD/CRPS is not just a liar, but a damned liar. They hurt you, me and everyone else with this damn disease because they don't have the simple courage to tell the truth and admit they don't know what causes it. They lie when they talk about nerve damage as a fact, and they lie by omission when they don't talk about cyanosis.

So why doesn't your doc have the courage to write cyanosis on your chart? If you have a work comp, SSDI or SSI claim and your doc writes that word down, the liars (excuse me, lawyers and doctors), would point out that cyanosis is not mentioned in any list of signs and symptoms of RSD, so you must have something else. It could cost you the little chance you have of winning. So your doc isn't going to write down a symptom that no one else mentions.

I may have described this story before, but I'm gonna do it again here. My case is unique in that the nerve damage I suffered is so severe, and so completely confirmed by myleograms, ct-scans, MRIs and EMGs, that the RSD was treated as an minor problem. Their liars were so busy claiming I was faking the nerve injuries that they didn't mind admitting I had RSD in one foot (and later the other).

I saw 4 neurosurgeons; 2 orthopedic surgeons; 4 pain specialists; 2 neurologists; 1 physiatrist and one family practice physician. Of these 14 physicians, 11 of them diagnosed or confirmed RSD simply by looking at my cyanotic foot. They never even touched it! One, an ortho surgeon, obviously never heard of RSD; he ordered a Doppler blood flow study (which has been used to prove no sympathetic vasoconstriction in RSD), to rule out peripheral artery disease, which it did. One neurosurgeon said I was faking everything including RSD, and one pain doc actually compared the temperatures between my feet before confirming RSD.

Evey doctor I saw, except one, had treated RSD patients and knew I had the disease because my foot was cyanotic. But you can't go into an ER and get something for pain because cyanosis is not listed in RSD.

If you are going to survive this disease, you are going to have to stop believing the "experts"; they are lying their butts off. There is no other explanation for the absolute silence on cyanosis.

I don't think anyone at this forum really pays attention to your cyanosis; because your doctor doesn't and the "experts" are dishonest. You just don't think it can be that important. It is. When I get my website up and running, I will announce it here, of course, and I pray that every one of you takes the time to read and study what I write there. The "experts" aren't helping you; they haven't helped anyone.

Mike, I'm going to **** you off now: I know you thought you won the last debate, but that was only by default; I made it clear that my last post there was my LAST post there, so I didn't reply.

Dr Robert Schwartzmann has sought media publicity as THE EXPERT on RSD; I have seen him quoted in several articles posted at this forum, so I have no doubt he wants to be thought of at the EXPERT. Ok, doc, you're the biggest "expert"; which makes you the biggest liar.

It is impossible, Dr Schwartzmann, to see thousands of RSDS/CRPS patients and not notice that most of them present with cyanosis; but you never mention the word. That makes you a liar by omission. In fact, it makes you a damn liar by omission. You are deliberately hurting people with RSD because you don't have the guts to admit you can't prove nerve damage. You lie instead.

You push people who can afford it to get your "ketamine therapy" even though you know that its rates of temporary pain relief are dismal and of permanent relief non-existent. Is it the money, or are you just a pathological liar?

I don't know how many at this forum have tried "ketamine therapy", but I can't think of anyone who reports six months of significant relief. Yes, ketamine can numb nerves, and not just pain nerves, and it can suppress neurotransmitters that actuate pain, but it can't fix RSD.

I wrote this post because I decided to stop being polite and to point out that these lies are hurting people a care about: You. You are the only people I know, and you deserve the truth. If you can find a flaw in what I've said, you'll rightly ignore my words; but if you look at your cyanosis and imagine how life would be different if it were mentioned, you won't find any flaw.

It is impossible to learn the cure for RSD without understanding the cause of cyanosis. Something is causing it; it isn't just there for decoration, and that something is the real cause of this disease

If God grants me the strength and the time to open my website, you will find more truth: about a disease that really does explain every sign and symptom of RSD, including cyanosis and symptom migration.

Every time I come to this forum and see a new thread by someone experiencing symptom migration I want to cry over the many posts I wrote at BrainTalk that are apparently gone forever; especially those I wrote about how to at least delay the onset of symptom migration.

I wish I could write about it now, but I need to write about the scientific evidence explaining ischemia reperfusion injury before anyone can understand the explanation for symptom migration and the precautions that have kept me safe for ten years now.

My website doesn't mean I'm abandoning this forum. I can't; its all I have. What it does mean is that instead of thousands of words posted at BrainTalk that fell off page 1 and into eventual oblivion, there will be about a dozen specific articles on every aspect of this disease that will be available to anyone; at least as long as I continue paying for the domian name.

By the way, Allen will be working alongside me on this website. With our combined knowledge of computers and the Internet, we'll be an unbeatable team. I know how to turn a computer on, he knows the rest.

Hmmmm. I said a dozen articles, which is what it will take to explain the true nature of this disease, but I'm so ****** at the "experts" that I may keep adding articles pointing out their lies until my arms stop working.

But for now, today, please consider what I've just written. Try to come up with a reasonable explanation for why cyanosis isn't mentioned.

Finally, why should anyone pay attention to what a former social worker in rural Kansas has to say about RSD; especially when he disagrees with all of the experts? All I can say is to repeat what I've already written here; I studied this disease for four years, looking for the truth. I believe I found it and I believe that anyone who takes the time and makes the effort to study what I write will agree.

I will close with this final point: Thoracic surgeons know about ischemia reperfusion injury, but they don't know anything about RSD. If they get an RSD patient referred for thoracic surgery they might look it up, but they'll just read what everyone else does; that it is the result of a nerve injury. They might get a clue if they read the word cyanosis, but of course they won't.

When Dr Rene LeRiche first noted cyanosis in a wounded soldier diagnosed with causalgia, he knew he had found the most important clue for understanding this disease. He guessed that it was sympathetic nerve damage. He was wrong, but how could he have guessed it was a disease that wouldn't even be discovered for another 60 years?

Finally, when his hypothesis was disproved, LeRiche publicly abandoned it. He was a physician, but he was also a scientist; too good a scientist to pretend he was right when the facts proved otherwise. We need scientists researching RSD today; scientists who follow the truth wherever it leads, not the fake scientists who present their opinions as fact...Vic

I just wanted this to be on my post.

frogga · 04-22-2007, 07:32 PM

Heya

It is weird that there isn't always a correlation between pain and the degree of swelling/ colour changes.

I have had RSD 5 years and I have cold RSD. My colour changes can range from bright bright red to black and encompass every colour in between - even yellowy green! My legs are dark purpler/ black most of the time (with pretty red spots and patches). It is really odd that if I'm in flare and in horrific pain then my colour changes can be close to normal...

I don't know.. just wanted to say I'm as baffled as you are!!! Maybe protection has something to do with it? When I was first diagnosed with RSD I didn't know how to reduce the colour change/ swelling through use of slings, elevation, pressure bandaging etc - and that the best way to reduce the colour changes was to elevate and wiggle your fingers/ toes....

dunno... interesting thread though! ! !

Love

Froggsy xxxxxxxxx

dreambeliever128 · 04-22-2007, 07:44 PM

The palm of my hands get mottled with pink and white when I take walks and let them hang down and swing or overuse them. My toes get a kind of a deep pink at times. Looks so wierd.

Ada

allentgamer · 04-23-2007, 03:09 AM

That is one thing that I dont think I get. Sometimes my ankle will have a very light purple/blueish kinda color, but mostly the whole leg is abnormally white. Plus shiney, very shiney, even when lotion is applied. This is the legs im talking about, and also nearly no hair anymore.

I also get the cold, DEEP cold going on, and lately the right side of my stomach, side, and back are colder than then the left side. Something that concerned the ER doctor.

Did have an emg done and they found no H reflex in the rt ankle, and when they did the bone scan they found osteopenia in the rt leg and hip. The skin is very sensitive to air movement, and cold water.

Cake · 04-23-2007, 07:09 AM

I just wanted to add one thing to this, regarding Vic's post.

I had ten months of lower pain levels thanks to a ketamine infusion. A lot of the time I was totally pain free, the worst I got was probably a 4/10, but that was often provoked- such as the time I burnt my rsd hand in the oven!

) It only came to an end when I got bitten by a spider on my leg and caused nerve damage (resulting in rsd spread) and that started my arm up again.

And I've had over two years of no allodynia pain. Before my first infusion my kids couldn't touch my hand at all- for three years it was out of bounds. Within a few days of the infusion started my husband could hold my hand for MINUTES, and I could bang my hand and it wouldn't hurt. It's only in the past few months this has come back, and that was from my infusion in 2004!

So there are some good stories out there, but unfortunately the majority are not as lucky as me.

x Kate

Brokenwings · 04-23-2007, 10:23 AM

Hi all--the cyanosis thing, at least for me, is "usually" associated with cold weather, or CHANGES is weather. I have recently noticed over the past year or so, however, that HOT weather aggravates the RSD as well...

So, I either have icey-cold, reddish/purple hands and arms, with a "burning pain" (like when you play in the snow, things go numb and start to thaw out), and then bright red, mottled shiney stuff going on in the palms of my hands. Sometimes, my skin feels as though it has a "sunburn".

The REAL difficulty is-- it just "does it"...this can be "problematic" when being examined so BRIEFLY (as seems to be the custom), by INSURANCE docs--THEY DO NOT examine for fingernail changes, differences in skin temperature, etc., and somehow "overlook" the OBJECTIVE DOCUMENTATION of these findings by other treating physicians , as PROPERLY noted in the medical records..

However--if we all could be placed in front of an air-conditioner during one of these "exams" for about five minutes...bet things would be rather "interesting"!

Again, I have often wondered why thermography isn't used as often to aid in the diagnosis of RSD/CRPS, particularly since technetium bone-scans have such a proven rate of unreliability, especially in the early stages of RSD. (50/50). And what about the "reliability" of a bone scan, when the individual has been doing either formal physical therapy or a home exercise program? USING the affected limb is what helps either RESTORE or PREVENT osteopenia from occuring...(and also helps reduce swelling, muscle atrophy).

As stated elsewhere, the "symptoms" of cyanosis/ischemia ARE the skin colour changes and the temperature changes; part of the "diagnostic criteria" for RSD.

Bottom line re cyanosis: Doesn't it seem like the "thermostat" is "broken" in the affected body parts?!

Brokenwings

Bronco4586 · 04-23-2007, 04:53 PM

I noticed today that right after one of my pain episodes that my leg turned a different color, light red then bluish purple, almost grey....

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