After a crush injury to my neck, my arm turned inwards and hurt like hell. No diagnosis for 7 years. My right arm stayed turned in for many years. cranial sacral work was the first treatment that started to help.

In trying to get a diagnosis, I had many invasive tests. I had an angiogram I think it was where they wanted to trace from my groin up my body down my arm.. Many yrs ago. Either way, the puncture in my leg spread the pain into my leg on the same side as my arm...

I went to a patient pain group, and RSD was being thrown around. I asked a woman what it was, and her response was it was what I had and after the meeting she would help me get to a doctor that could diagnose me.
That happened and got diagnosed. Back in the 1980's doctors did not recognize this disease.
My leg started to turn in. Then the other leg as that was affected years later.
I worked with a top cranial and other gentle modalities. My arm was also . My arm is still not perfect as it went so many years with no help.

An anesthologist from th e Netherlands taught me to use 4 % liquid lidocaine! and a 1 sided 6 in cutip, and go down the sinus cavity. I let the lidocaine rest on the nerve bundle to interrupt the abnormal sympathetic firing.
This block will shut down the upper body flares if done morning and evening.
So this is a wonderful block we can get right on.

So the sympathetic system fires abnormally. Yes, painful, but neurological.
Dystrophy, yes.
I think the 'reflex' ( in RSD) came in due to the nerve bundle ?

This disease also spreads throughout the whole body in time so in the CRPS it is not regional.

In 2010 the IASP redifined what is Neuropatihic pain nd decided RSD/CRPS falls outsde that definintion so is not included any more.
FIIKS is a much better name.
F'ed if I know syndrome

"neuropathic pain" is concluded when the type of pain or symptoms described are known to be neuropathic. RSD/CRPS type 1 - has yet to be found to have identifiable "nerve lesions" that would then classify it with that etiology.

I don't think the medical community is trying to say that the symptoms aren't neuropathic in nature and progression. Instead they are saying RSD/CRPS causes neuropathic pain symtoms/progression but the exact cause/trigger is still unknown.

Hands aren't great at mo, and I've posted on this topic plenty of times in other threads, so I'll be much more brief than is normal for me!

Basically it's time we as a community got behind the name CRPS. I know it must seem pointless to have the name change after so long, but it was a panel of medical experts - doctors and specialists - who decided it after much debate or the implications. It wasn't a snap decision by politicians or non-medics or a drug company... And I think the new name does make sense. There were valid reasons that RSD was thought to be outdated as a name, and that hasn't changed.

It seems to be predominantly the US resisting the name change, and it is the confusion of name that is leading to research findings not being shared etc.

I just don't understand why we can't accept the new name and get on with things. We need to be looking to the future, not continually looking back and digging our heels in over a name.

This condition is too important, and cruel, to risk its future as far as research etc goes. In most international research now it is called CRPS, although they do refer to all its previous names.

I know many of you liking the RSD name won't like my comments, and I'm sorry for that, but I am frustrated by so much resistance to change. If they changed the name again tomorrow, I'd abandon CRPS and embrace the new one in line with the medical community I am relying on to help me in any way they can, now or in the future.

Ouch

Bram.

Still think FIIKS is the best name for it

LMAO... ahhh

For me...when I first got diagnosed I was all over calling it CRPS. I thought, "This is the RIGHT name for it and that's what I am going to call it." Unfortunately...every doctor I have had calls it RSD...and I gave up calling it CRPS. I really don't care what the name is...so long as the people I am talking to understand what I am talking about.

I believe both names fail to really convey what this condition is...and honestly...what name COULD? We are all so similar and we are all so different when it comes to this condition. There isn't any name, in my opinion, that can truly capture what we are going through, dealing with, etc...nothing that can do justice to a description of WHAT this condition is.

Even Kev's FIIKS...while accurately describing how well understood the condition is...doesn't touch on how truly complicated and awful this condition is.

Regardless of the name...I think it's much more important that more doctor's are educated about it...scratch that...that ALL doctor's become more educated about it so they can diagnose and treat the condition early enough to possibly do some good for their patients.

I personally think all the focus on the name detracts from the very important issues that need to be dealt with regarding the treatment of this condition.

Hi talking of name changes and such I have received a letter from a consultant that mentions the name:Chronic regional pain syndrome.

Now I also have a consultant who says Rsd
And a third that mentions Complex regional pain syndrome.

This gets very confusing at times as I know complex RPS is the new RSD but where does chronic RPS come into this? Or is it a different condition ?

Whatever the hell it is I wouldn't wish it on my worst enemy.before all this I considered myself pretty healthy but boy it doesn't take long to turn your life upside down.

Take care all

Hi Geordie

CRPS and RSD are essentially the same beast doing the same nasty things to us... There are two types of CRPS, Type I (no obvious nerve damage) and Type II (known nerve damage). But the symptoms and effects are the same, and basically RSD is CRPS/CRPS is RSD. There is a school of thought among some doctors that splitting CRPS into two types isn't that helpful for the patient, as it makes little difference to the treatment we need...Hmm...

RSD is the old name - it used to be called Sudecks Atrophy (?) and a few other things before RSD. Then qute a few years back a panel of experts decided to rename it CRPS as this was felt to be a better definition of the disease. Obviously there is contention about that decision but I do just wish all the doctors would call it the same name, then all the patients will call it the one name, and we can stop having the confusion of two names.

Good luck to you Geordie, hope you have a good evening.

Bram.

They can call it whatever they wish, it doesn't change the fact that being in constant pain sucks!!!