First off let me make something clear here, i wasn't referring to all WCB claimants I was talking about the one who claims to have swollen breasts, belly and brain. Also those were my doctors words not mine and I'm sorry if i didn't make that clear. I think you can agree with me that people should be diagnosed by a doctor and to claim that everything that goes wrong with our bodies doesn't mean its RSD related after all most of us are in our middle years where most anything can happen. Sorry if I offended anyone that wasn't my intention but what I was trying to make clear is so many self diagnose themselves. If any of you out there don't believe that there are people who try to con the system then you should take your blinder's off because they are out there. This is why I said doctors reports should back them up and that goes for everyone not just people with WCB claims.

Let me say also that there is no anger towards others with RSD, that statement I find a little hurtfull, I can see with that said my point was totally missed. I would think that those of you who really have RSD would see my point, don't you think it belittles us when those out there claim such crazy things, how can we be taken seriously. Thankfully I never have had a problem with any doctors but I do know that some doctors I have talked with say they are on guard because they are being told things that don't make sense.

Let me put it to you this way and then maybe you can see where i'm coming from. When it comes to survey being done by people with RSD do you think its fair if people put that they are full-body etc-- when they haven't been diagnosed by a doctor and that goes for putting any answer down that isn't backed up by a doctor. Then it throws out the whole survey as being unreliable. I have seen for my very own eyes that when I tell someone with RSD that I had new areas/symptoms then within a week or so the samething was happening to them so can't you see my point.

Oh could I tell you guys somethings I have heard the past few years from people and if I spelt it all out here you would then see that I'm not a bitter RSDer but someone who is trying to stick up for those of you out there who are really suffering. If you don't think that I live a life of hell think again why would I come on here and pick on people who suffer this horrible diease if anything I'm trying my best to make it right so that all RSDer's get treated fairly by doctors.

Hey Dew do you know of a person with RSD in their feet and legs that would ever put themselves in a pair of hiking boots and jeans? Well I did. funny thing is my legs and feet are not my main RSD site but yet I have never even worn a pair of running shoes since it went into my legs and feet. Haven't even worn jeans in years. So again I ask you does that make much sense to you. As I said if I put up all that I know to be true here you guys wouldn't be picking on me but you would be questioning these people who claim to be so bad. I really don't want to keep this going just take what I've said and know that I to have RSD and I'm not out to put all people with RSD down as a matter of fact I would like to see a cure ASAP so that all of you could have your old lives back. Yes I do have a heart and a big one at that. PLEASE know i'm here to defend you guys from those who try to make themselves worse than they truly are.

I can't speak for Dew...
I can only speak for myself....

FIRST... I understand and appreciate your wanting to help others with RSD. It is a terrible monster that we are fighting.

SECOND ... Please remember that there are no 2 people who are fighting RSD that are the same. We don't have the same exact symptoms. No two of us react the same to medicines, therapies, or any other thing out there that is used to lessen our pain.



I have had RSD 5+ years....Started in my foot and within 5 months it had spread full body. Organ involvement began about a year later. NO... I did not self diagnose...why would I want to... I wanted to deny it was spreading... I WANT THIS MONSTER TO GO AWAY.

I have seen 9 doctors (mostly specialists) who all have diagnosed RSD and confirmed its spread.

My legs stay a constant DARK Maroon/Purple.

I wore jeans before and continue to wear them today... my physical therapists and doctors have told me that they believe it is best FOR ME to keep wearing what I was used to as it would desensitize my legs. Sure it hurts... but other materials feel worse on my legs than my jeans. I can't wear shorts as the air hitting my legs feel worse than my jeans.

As far as shoes... I have wore hiking boots since RSD. I have a very light weight pair... I dearly pay for even putting them on and take them off as soon as I get back inside. But I can't go outside in the winter in the snow wearing my Crocs. If I have shoes on I wear the soft fuzzy lined Crocs. They are light weight and hurt less than any other shoes I've tried.

As far as Work Comp goes... I was injured by a coworker through no fault of my own. I had to fight work comp to get a settlement so that I could pay my doctors who so graciously continued to treat me while I was dealing with all of the WC stuff. My settlement was just enough to cover medical expenses that I incured while waiting on a settlement.. I recevied $0...not one penny went in my pocket. Then again... I didn't want the money... I WANT MY LIFE BACK!!!

Work Comp is different in every state and every country.

I sincerely wish you the best.

Abbie

Hi Abbie.

I would like to clarify the issue of gain from RSD.

Here in Canada RSD can be the way out of the workforce.
If RSD is caused by a compensable injury and is documented and acepted by WCB, WCB will pay a pension to the injured worker.
So, you see that, here in Canada it can be profitable to have RSD.

As for shoes, I can imagine the pain you must suffer.
I can only wear Wallabies or Hush-Puppies, at least one size larger than my foot size; any other shoes makes my feet feel like they are being crushed in a vise.

I wish you pain relief and a cure to be found soon.

woodsman

Hi. Shelmora notes that with most people it takes 15 years to spread to all limbs. I'm assuming this is a reference to The Natural History of Complex Regional Pain Syndrome, Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain 2009; 25: 273-280, free full text at http://www.rsds.org/2/library/articl...lexanderGM.pdf. If anyone hasn't seen it, consider it as required reading. And indeed, the article states that:

Contiguous spread occurred in most patients early (1 to 2 y) and remained the most common type of spread during the first 10 years. Spread to other extremities occurred throughout the disease process with no specific pattern whereas generalized (all extremities) spread was most prominent late in the disease process (after 15 y). [p. 275.]

There are a number of take home points in the article, the most salient being:

This study shows that although CRPS is a progressive disease, after 1 year, most of the signs and symptoms were well developed and demonstrate only moderate increases with disease duration. [p. 227]

What this means, in effect, is that there is only a slow progression from wherever you are at the one year mark. (Another reason why intervention in the acute stage is so important.)

The other thing of note - although off topic for this thread - is the discussion of "cognitive and memory difficulties" at p. 278. Eight years into this, I'm aware of this big time, what we used to call "brain rot." But any more on that is properly the subject of another thread.

Mike

I just want to be proactive here to prevent any upsets on this thread

where we welcome you to NeuroTalk, Shelmora and woodsman, and where your own opinions and experiences have relevance, yet I do need to point out that we strive to allow support for *all* members here, whether or not their symptoms fit what others may define as the parameters of the illness.

It seem to me to be very presumptuous to pass judgement on the symptoms of others, or what their motives may or may not be related to their illness,
especially amongst people that you do not even know.

No one knows for sure what this or any illness is actually like for someone else, and so whether or not you agree with their symptoms and diagnosis, attributing dishonest motive to specific symptoms is understandably going to cause offense


I hope this discussion will therefore stay on topic in order to stay open

thanks