I hate the thought that my first post would be on the issue of spread but here goes. I've have been diagnosed with severe RSD for almost 17 yrs now. One thing I have learnt sitting back and watching people discribe their RSD spread is that many have misunderstood everything there is to know. Not that I claim to know everything but when one lives with this for so many years you do learn something.

First off let me say that it is extremely rare to go fullbody RSD, so many people think because they feel pain somewhere else in their bodies it means the RSD is spreading and that's not true. Let me just say that many of us end up having chronic myofascial pain syndrome due to lack of exerise and normal movement, this is why our myofascial tissue tightens up so when you move one feels pain. Not to forget that our posture is usually out of wack from putting ourselves in protective stances. Some develope fibromyalgia also but not normally within the first few years, this is something that takes time.

I have supported a lot of people throughout my years of RSD and I'm finding that many are being misdiagnosed with RSD as there are so many other things that mimic RSD. I happen to have a very good doctor who is an internist but also an extremely knowlegdeable doctor on RSD. I just asked her last week what percentage of RSD people go bodywide and she said less than 1% and she has seen many people.(Also another RSD doctor told me the same number less than 1%). First off you have to ask yourself do you have " All" the symptoms of RSD when it spreads. Everywhere RSD has hit me and I have been diagnosed by an RSD doctor as having "fullbody RSD" but let me say it took almost 13-14 yrs to get there. I should mention that I was classed as a very severe case right away (month after surgery).

A person will not go fullbody in just a few years. She said to even go to all four limbs takes a many number of years. I find a lot of people self diagnose themselves without going to a doctor who is knowledgeable about RSD and yes they are out there. I've read a few posts where people are claiming to be "fullbody RSD" with organ involvement etc!!!!. I even read one that said they get " RSD skull cramps" may I ask what the heck is that? How can a skull cramp you need muscles to cramp and our skulls don't have any. There is such rediculous things being said from having RSD.

Let me just say that everywhere RSD has spread on me I have always had the discolouration, tempature changes, allodynia, burning pain,swelling with pictures to prove it. From my face right down to my toes even after all these years. It's my belief that people should go to RSDHope and read the articles there on spread, pain by itself is not good enough to say your RSD has spread you must have the symptoms to prove it.

Let me tell you just a few things that some people have said RSD has caused for them. First off there's one person I know ( talk to them via telephone) and he claims RSD has made his stomach so swollen that he looks about 8 months pregnant, not to mention that his boobs are swelling from RSD as well as his brain. Now have you ever heard anything so ridulous?

When I told my RSD doctor this she broke out laughing saying there's "NO WAY" RSD does that, as for the RSD skull cramps I've never seen such a confused look on her face before and I've been seeing her for 16 and a half yrs. She said its people like that who make it hard for people like me(and those of you out there that are really suffering) to be taken seriously for the hell I & you live in and yes it makes me quite angry to say the least.

I bet with everything in my life that these people are WCB claimants trying to get as much money as possible instead of caring about getting better in anyway. I've been pretty much bedridden for all my years of RSD so yes I know what is like to be bad and have this thing affect me from head to toes..yes if you want pictures I would be happy to send them to anyone who doesn't believe me.

I hate to sound so bitter but it just makes me so angry when people self diagnose themselves, no one should say they are fullbody or even 4 limbs without having a Dr. diagnose them. Even Dr. Schwartzman says that RSD does not normally spread to all four limbs but until late into the diease process (15 yrs) and everyone that I know to be diagnosed by a Dr.( don't know anyone else who has been postively diagnosed as fullbody) this is the time frame it has happened to them. You would think that the numbers for fullbody spread should be 99% if you listened to those who diagnose themselves.

What makes me angry is if people are going to claim this stuff then they should have to back stuff up with medical reports when it comes right down to it, for this is what is making it hard for those of you out that need to be taken seriously when it comes to your RSD. How can doctors support us if people are claiming that RSD does these ridulous things to them. I'm sure most of you out there are honest RSD sufferers who don't make everything seem worse than it truly is. For those that want to claim such stupid things then please back it up with your medical reports and your drs diagnoses. I think its only fair to those of us who really need a doctors compassion and to be believed by them.

I apoligize for sounding so negative but just really think about what I've had to say its the god's honest truth because there's one thing I don't do and that is lie. PLease cut me some slack for trying to be as honest as I could be and I believe if you really think about what i've said you have to wonder if its truly the spread of RSD. Please let me end by saying I know that RSD does spread to other parts of our bodies again my issue is with those who claim to be fullbody is less than 10 yrs. Remember this claiming it is one thing but proving it is quite another..........Hope you all have a great day and may your future days be filled with less pain.

"I bet with everything in my life that these people are WCB claimants trying to get as much money as possible instead of caring about getting better in anyway. I've been pretty much bedridden for all my years of RSD so yes I know what is like to be bad and have this thing affect me from head to toes..yes if you want pictures I would be happy to send them to anyone who doesn't believe me."
shelmora

I am a WC injury, CRPS I patient...I find your notion that all WC plaintiffs have their own agenda and attempting to take the full-body RSD Crown away from you, ridiculous. I mean, really..who would want that crown???
Further, if you knew anything about dealing with WC, it would be easier to use one's personal insurance to get immediate medical care than it is to deal with WC ins., that makes the patient wait...wait..wait..until the RSD is irreversible...as in my case.

This isn't like the scene in Jaws where the actors attempt upping one another by showing their battle scars from an encounter with an ocean predator.

I hope you feel low pain soon as your anger toward other RSD patients isn't productive to others; nor is it healthy toward your person as stress increases pain flares.

I will keep you in my meditation prayers.

I agree with what Dew said about some of your comments being hurtful towards all RSD sufferers. No one on WC would like having that 'crown' and i'm sure all of them wouldn't chose to go down that route unless they have any other choice!!!

I'm 14 and have had RSD since I was 12 years old. It started in my left leg after an ankle sprain and then spread to my right arm after a knock caused my blurred vision and then to my left arm earlier this year after I fell and knocked my arm on some ice.

Each time it spread, I could tell!! IMO, most people know when there RSD has spread as they will have a lot of the classic symptoms of RSD, the pain, the swelling, colour changes etc. Each time my RSD has spread, I have gone to my Doctor and he has confirmed a spread of the RSD. I have been diagnosed with RSD by every doctor I have seen, including the top childrens hospital in the UK who have ALL said that I have RSD with spreading etc.

I have friends who have RSD that has spread full body in a matter of months - some in a matter of weeks etc. It's been proven that theres no rythm to the spread of RSD - it will spread however it wants, whenever it wants!!!

I do agree about seeing a doctor to confirm RSD. My mum and I have ALWAYS done that and have always ruled out any other possibilities and I think most people on here have!

Please think about your comments. Theres LOTS of websites out there that say RSD can spread full body in a matter of months and my doctor agrees with that also. I think some of your comments can be quite hurtful towards RSD sufferers.

I wish you the best of luck and hope you have a low pain day!

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 Dew58.
I am sorry you had to get this disease and even more sorry that you had to deal with WC. I know a little about WC in the States and I know that, to say they are heartless, is an understatement.

Part of the reason for the mistreatment of RSD patients is the fact that, there are people out there who do try to scam WC and Insurance Companies.

I for one applaud Shelmora's post and, having had CRPS Type2 for 27 years and having had to jump through many hoops with wrong and late treatments because of being disbelieved at first feel the same way about those you try to con Drs. and WC, WCB and Insurance Companies.

I never had to ask others about symptoms or to send me links to articles or web sites about RSD; I had the symptoms and, eventually, after many tests and procedures, I also had the Doctors reports.

I am a member of another RSD support group and over the years I have gotten a pretty good idea of who really has RSD and who does not or, who has a very mild case. RSDers who are really in bad shape can be known not only by what they say (post) but also by what they don't say.
When I read about scull-cramps or swollen brain or belly and breasts from RSD, I have to wonder what is going on with their bodies. Since RSD, to my knowledge, does not do that.

I have known Shelmora for a number of years now and I can tell you that she does not have to vie for a crown; she has a bad case of RSD and her medical file, which I have seen, leaves no doubt about that nor does her body.

Shelmora is the most compassionate person I know and always there for anyone who needs help even though she is barely managing her own life and home. Her anger is directed at those who scam the Doctors and the system, making it so much harder for those who need help from WC, WCB, Insurance or the medical system.

If people were always honest about their condition, you would not have had to fight so hard to get proper and timely treatment for your RSD and you may not have developed it in the first place.

There is no doubt that there are people who see "RSD" as an easy way out of having to work and they will try their best to scam the system. Surely, you must know that.
Shelmora's post referred to those scammers and not to those with actual RSD.

I for one will never feel offended by someone expressing anger at RSD scammers; after all, I have the disease.

I hope you have an easy day and night and find some relief of your pain.

woodsman

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

I take vicodin and baclofen. :-) I wouldn't move without something for the pain. lolol I was on work comp for the first year and a half and out of all those months I was given something for the pain for 2 months, that's it. Since it spread so quick I learned how to keep my mind busy and just deal with it. Not like I had much of a choice. lol I'm not sure I tolerate full body, I've just accepted it and have found my limits and ways to keep myself busy. When it gets rainy it hurts but when it eases I'm happy. :-)

Hugs,

Karen