Originally Posted by shelmora

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.

Originally Posted by shelmora

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?