When you are going thru the worst with your CRPS do you get the feeling like everyone thinks it is all in your head? I really got that feeling this morning and it makes me sad. I wish they just understood what I was going thru. I dont know what to say to them to make them understand.

Hi Dana,

Yes, I've felt that way too. It's almost like if you had a broken leg or arm, it would be more obvious that there's something wrong.

Is this at work? Many times there's support lines that you can call that are there to support employees with issues. I know that not all employers offer this...

If it's at home, I've found that it's imperative to surround yourself with people who understand. There's a really good letter that was written by a fellow sufferer. http://www.rsdhope.org/Showpage.asp?...1&PGCT_ID=2953
Take a look at it. It might help.

There's support here! I've just been diagnosed, so I'm a newby. But, I would be happy to help in any way. You can PM me also.

Beth.

It took over 3 years to get a diagnosis, and before that it was said by 90% of the doctors I seen that it was all in my head.

Luckily there is some that will help you, you just have to find them. That is the hard part lol. This time I got lucky in the ER because my body was having real physical signs they could measure. I have noticed that as we get on in years of RSD, it eventually starts to cause some measurable problems that the doctors cannot ignore, but that is when it is waaaaay to late to actually turn around this ugly disease.

Dont give, keep on keepin on!

Yes, I've had that feeling many times but most especially at the doctors. You are not alone. Even though I went to the doctors with a blue, swollen, ice cold leg many treated me as though I were crazy...others treated me like a 2 year old. What made it especially hard is that I'm an R.N. and I thought this entitled me to some respect but,boy...was I wrong. If the doctors are making you feel this way, keep trying other doctors. I went to 10 before I found someone who was both knowledgeable and compassionate. So, keep trying. Also, keep posting here...it is a great help...Hope things get better for you. Jeannie

unfortunatly ... wish pain turned you green or something...

well, maybe not (been vomiting on and off)

how about some nice colour that could be measured in a quantitative measure. and WHY won't doctors actually consider that RSD is the worst pain ever according to pain charts? (McGill)

Hang on in there... and try more drs as Jeannie says...

Love and hugs

Froggsyxxxxxxxxxxxxxxx

Hi Bronco,
You are NOT alone. I was so far down I resorted to a psychologist voluntarily - as a rule I despise them (they are trained differently in Australia - not as rigidly as in the US) - I know that will cause a fuss. I actually found one who was a doctor too (general practice).

On the one hand they tell you you are the best expert in your condition and then they turn it around and piddle in your pocket.

I too, was very sad due to the actions of a couple of doctors and the CRPS. I FULLY UNDERSTAND. So, I've been even more down....because of the doctors' responses let alone the CRPS. They don't listen because no matter what crap they spout it is just that ...crap. It's really like in the show HOUSE ...."all patients are idiots" and when we are doing badly they play on our lack of resilience.

I too, don't know what to say to them. I've read heaps as I sense you have, understand it but by the end of a consultation after the trip to their rooms I'm not with it enough to dance the dance. I know what is happening but just run out of spare anything. The pain takes soooo much of my capacity to function and rebutt as I would normally.

When that work at M Gen Hospital was published about nociceptors dieing in the CRPS affected area I thought yay! proof at last we aren't going nuts. There was a single strong response from another US doctor who did a short film saying it WASN"T in our heads but that old computer crashed and I haven't been able to find it.

When I do & I will, I will put the link up for us all - it made me feel better for a short time. I'd love to find it so you could see it.

Best regards
AJ

Hi Bronco,
You are NOT alone. I was so far down I resorted to a psychologist voluntarily - as a rule I despise them (they are trained differently in Australia - not as rigidly as in the US) - I know that will cause a fuss. I actually found one who was a doctor too (general practice).

On the one hand they tell you you are the best expert in your condition and then they turn it around and piddle in your pocket.

I too, was very sad due to the actions of a couple of doctors and the CRPS. I FULLY UNDERSTAND. So, I've been even more down....because of the doctors' responses let alone the CRPS. They don't listen because no matter what crap they spout it is just that ...crap. It's really like in the show HOUSE ...."all patients are idiots" and when we are doing badly they play on our lack of resilience.

I too, don't know what to say to them. I've read heaps as I sense you have, understand it but by the end of a consultation after the trip to their rooms I'm not with it enough to dance the dance. I know what is happening but just run out of spare anything. The pain takes soooo much of my capacity to function and rebutt as I would normally.

When that work at M Gen Hospital was published about nociceptors dieing in the CRPS affected area I thought yay! proof at last we aren't going nuts. There was a single strong response from another US doctor who did a short film saying it WASN"T in our heads but that old computer crashed and I haven't been able to find it.

When I do & I will, I will put the link up for us all - it made me feel better for a short time. I'd love to find it so you could see it.

Best regards
AJ

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

Vicc - do you have a voice recognition software program??

The website hosting I use has a free section. I've had mine for 3 yrs now- no cost.
It's in my profile.
Or if your site is already started - I would be happy to link your info site to mine when you get it done.

sorry to get off from your main topic Dana -
Many of the TOS forum members get the very same comments and the "it's all in your head" stuff because TOS doesn't "show" either.
Seems it especially hurts when it comes from family or close friends.

dear Dana
we have all experienced the doubt of others, many of us to the point where, in the midst of severe pain ... and yes cyanosis, Vic for sure ... we even doubt it ourselves. it is sites like this that give us a certain degree of sanity through it all. i always wished my pain would GLOW with the degree of hurt i was feeling ... but in the end we are left with having to trust ourselves.
To Vic, keep writing ... i enjoy your thought provoking messages.
joan