Well, let me first say that I'm sorry that you have had to deal with this for so long and at the extent that you do. I applaud you for saying what you said buuuuut I do have a question....doesn't the affected area always have sight symptoms??? I was just diagnosed with rsd/crps in my right foot (4 months) and there is never a moment that it isn't shiny, purple, red with white spots, sweating, cold or anything else that it wants to do...hahaha. *That foot has a mind of it's own...lol* Just curious cause I'm new here. I had never heard of rsd/crps and am trying to understand/learn all I can about the disease. I'm trying not to get depressed or worry myself too much but it's not easy when you have a pain that reminds you 24/7 (as you know) and then reading all the stories......tends to scare a newbie so thanks for the post and wishing you many painfree moments.

Hi Shelmora,
First, I am compassionate to the fact that you have had RSD for so many years and therefore have experienced pain and upheaval for a very long time.....
My heart goes out to you for living with RSD throughout the years.

I reiterate that RSD is so very different for everyone (different symptoms, different timeframes) it is very unwise to pidgeon-hole RD-ers into a formula of time,spread pattern, and symptoms.

People express themselves differently, and within their ability of technical jargon. The man with "skull cramps, swollen belly and and swollen breasts" may have legitimate symptoms, only his personal descripton might not hold the correct medical terminology. It could be that he has debilitating migraines, visceral organ involvement, and terrible inflamation, in addition to extreme adverse reaction to meds.

While i, too, take offense to anyone who tries to take advantage of a system, I also am cautious not to judge someone who may not be able to express themselves correctly, but who is experiencing genuine pain that could be RSD-related.

My surgeon didn't listen to me and he was the one taking advantage of me by not following the hypocratic oath and truly listening to his patient.

I also hold that not all doctors are the final word on a proper diagnosis or analysis. As I have mentioned before on the site, I had complained to a neurologist that I was feeling burning in my right leg and in my face. (My RSD started in my left foot.)

He said " Don't worry, RSD/Complex Regional Pain Syndrome) doesn't spread, that's why it's called "regional", because it stays in one place.

Generally, I have learned more from peers and fellow RSD'ers than the docs.

I am a WC case and have had to fight and wait for any treatment received.
I have written letters and made phone calls and advocated for myself, even though I do have an attorney for my own protection.

Like others, I too, as you must as well, just want my life back..
Nevertheless, I am doing my best to come to terms with this new life.
I truly wish you relief, comfort, and hope.

Sincerely!
Hope4thebest

Okay I see that I've stirred up some feelings here and I can see some of you have taken what I've said in the wrong way or maybe I didn't make myself clear. First off let me say that when someone with RSD only cares about what WC is going to give them money wise I have to wonder what is truly their motive. I had one person tell me that they believed because they couldn't work anymore WC owed them a house and should buy them one, you are forgetting that I have talked with some of these people personally and when someone finds out that they could have asked for help in the home but didn't then expects that WC back pay them for it doesn't make me feel as though they are out to get better.

Before I pass judgement on anyone and believe me when I say I know we all suffer in different ways and not all of us have the same symptoms but i do ask my RSD specialists (and more than 1) questions before I "Shoot" my mouth off. You are forgetting that these are not my opinions but the opinions of RSD doctors so are they "WRONG" ? I have written to Dr. Schwartzman with many questions and I cannot believe that a doctor such as him who has been treating RSD for many years (over 30) can be so wrong with his clinical impressions and survey's (of course it depends on people telling the god's honest truth about their condition). If I took the time to write all the stuff here that I've been told and posted a few letters I have received over the years then you can only ask yourself one thing and that is " Do people really tell the whole truth".

One thing I can say is never in 17 yrs have I told a lie about the status of my condition or the severity of it. If you had talked with some of the people I have who claim to be a severe case and saw the inconsistencies coming from their mouths and out right lies then maybe you would cut me some slack here.

So the question I have is why are some of you so against what I've said when its you the real sufferers that I'm defending here. Doesn't it make you mad to know that people are out there claiming to be full-body when they don't have a doctor's diagnoses to say that. Again pain by itsself is not enough to say its RSD spread.

By the way a huge "THANKS MIKE" for standing up for what I said its nice to see that someone else goes by what an RSD educated doctor says. Not to forget RSD Hope and the RSDSA Assocation. I was asked by one person claiming to have RSD if I could write them a personal story about life with RSD, yes they were trying to get a pension through the government. Never would I dream of having to ask another person to write my story I've lived a life of pure hell here my words could make someone pretty educated on what life with RSD is like. Why would someone ask for your personal story or to ask that you write one, well I can see only one reason so they know what to say or what symptoms to say are happening to them. So again you guys please understand that I have seen for my very own eyes and ears that people are scamming.

Let me end by asking this, if you where talking with another (RSDer ??) and you have had the disease for many many years and they for only a very few and you tell them about a symptom they didn't know about then a week later they had the very samething happening to them---hmmm???? and this happened over and over again wouldn't you be questioning what they were up to even more so when no doctor believes there's really any thing wrong with them and that's out of their own mouth. Not to forget this last thing but when i'm being told that they are cheating WC and yes those words came right out of the person's mouth then what i'm supposed to think?

So can you guys please cut me some slack here it just makes me so angry when people are claiming to have things happening to them that are false in the biggest of ways. Again I wouldn't say this lightly, I've heard it straight from those " horses mouths" so to speak. I can prove everything I say about my RSD condition can they??.

Just know that the scammers are out there and they are only interested in money or early retirement and yes its those people who make it hard for the honest ones to get timely treatment or to be treated fairly by the WC's, WCB's and all other insurance companies. Yes this is where my anger lies and how could you blame me for wanting to defend those of us who truly do suffer this horrible painful disease. Don't fool yourself to think they aren't out there.

I will end for the second time...lol..by saying thanks Woodsman for your kind words and support I know what you suffer with and my heart goes out to you as always, you are a true and valued long time RSDer that I admire with my whole heart and love of course. I know you've studied RSD long and hard and i've always respected your input as to what RSD is all about. Sending you a big but gentle hug.

Hi again Shelmora

It seems to me you have made yourself clear. You are upset by people who claim to have RSD in order to get WC or disability money.


However, It seems maybe I didnt make myself clear in my last post so let me try again:

scammers abound in every area of life, but what is the purpose of your bringing this here? Our members cannot stop the scammers, just as you cant.... and singling out symptoms only makes it feel you are pointing fingers specifically.

This thread is about the spread of RSD, and not about whether or not anyone fakes symptoms to get money

I would therefore appreciate it staying on that topic as I feel this continued return to the negative aspects of some who may try to scam compensation for their illness is not relevant to the topic and does disservice to those who are genuinely ill. The continued emphasis on scamming IMHO only draws more attention to it and can have detrimental effects on those who are legitimately claiming for their illness.
As mentioned before, you made your point, and nothing further can be achieved by continuing to make it here.

time to move the conversation back to what the original poster intended...
a discussion on the spread of RSD

thanks

Just to clarify one thing for the record. Once upon a time, after I had been suddenly taken off Trileptal because of a drop in blood sodium, but before there was time to ramp me up on a similar med, and while under intense stress - late catching a flight to go to Philadelphia for treatment - I suffered a bout of scalp cramps that were about the worst thing I ever went through.

So they can indeed happen, whether or not they're in the book.

Mike

Just a bump to bring the original topic back to focus.

Jo -

It was in that spirit yesterday I offered my post re "The Natural History of Complex Regional Pain Syndrome." And my last today, just before yours, dealt with how under "exigent circumstances" we can boldly go where no person has gone before in our personal symptomatology [read: spread of symptoms] whether or not it's in the books.

Of course we may meander a bit here and there, but so long as there is no ill will (overt or implied) I personally don't believe that we have to adopt a per se rule against it. It's part of what can make threads come alive, although having said this I know that it is too easy for me to take a simply question and launch into an extended discussion that misses what the person who started to thread was trying to get at. And while we (I) must be mindful of that, neither should a thread be limited to the "four corners" of the initial post, where what we're trying to do here is have a pleasant (and respectful) conversation.

Having given the question some consideration and with all respect, overt acrimony is another matter altogether, whether or not on topic.

Mike

I believe the key word in any post or posted reply on NT is "RESPECT."

Should the topic be open to explore or expand to other realms related to the topic at hand by members that wish to investigate further? ABSOLUTELY.

This is called critical thinking, and we all can learn from such discourse. I enjoy listening/reading others opinions on each post. Anytime there is an opportunity for "growth" in knowledge from one another, it is a treasure.

We learn from each other at NT. Sometimes there may be a spark of temperament that may feel uncomfortable; however, it is the passion behind the discourse that is focused on a mission to explore the topic in an open minded manner.

Mike has a very good argument, as in debate/discourse. Is it necessary that we all have to agree with each other on a post? No, we are individuals and each of our life experience brings diversity to the floor on each post.

With that said, the manner of the spread of RSD/CRPS is diverse. If there was a cookie-cutter answer, I believe there would be a cure.


Dew

just as a FYI thing..

That bump was just a general bump of the original post for all , it wasn't aimed at anyone specific.

Sometimes when the 1st post is bumped up after a reminder to stay with the topic - it just helps for everyone, so they don't have to scroll back to read it.

ok like always here of late i am late on this thread. ! sorry..

first of to nancy yes rsd can and will do what it wants when it wants period. and i hope that you are able to get it under control. i know how scary it can be and we all know that we sure as crap dont want it to spread. period..

shelmora i can agree with what you are saying about people scamming the system drs etc. but i think that the problem that people are having here is that you popped in and where very adiment with the post that you were writing . this in no way me beng rude or disrepectful. like you i also suffer from severe rsd since i was 16 . and have documented proof that i have full body and organ involvement and have been treated by very well respected RSD drs.

we are a very close community here and are very protective of "outsiders" (this is to be viewed loosely ) that come and and make harsh statements. that is why most are reacting the way that they are. also we all are aware of people that scam for all kinds of reasons we see this all the time.

i bet you are a very caring person. as are we. we know what it is like to have to suffer with this horrible monster and pray to god that there will be a cure someday .. please know that i was just stating my Opinion .. i am sorry if i came across brash this is solely the way that i am.


hang in there nancy!!!

carrie