The name change RSD to CRPS
 

This has been a hot topic with RSD people as new people are diagnosed with RSD now called CRPS.
RSD was named in 1985, and at that time it was a positive change. The name is/was starting to get recognition as not a psychiatric condition, or just a pain condition. It is a neuro disease and dystrophy will happen in later stages or years of the dis- ease.

However, the name was changed after several doctors did not see dystrophy. I and so many who know, see this as another mass distraction.
Doctors are doing implants, ketamine coma's/ injections; using dirty drugs that are seizure drugs with horrible side effects.

RSD responds to name brand Klonopin sedating the nervous system,
Hyperbaric oxygen deep dives 20+ ; name brand liquid Hytrin (no longer available)
Each treatment that has worked has been taken away, or costs outrageous amounts of money.

MS and Parkinson's for example have treatments approved for their disease.
RSD or CRPS has none.
We are going backwards to a complex pain condition from a neuro disease of which it is.
So this is causing issues within our community.

I do not think that CRPS is a national name as it is only our coding in the US that has changed. I think these are huge issues that should be looked at, as well as us that have had this disease for too many years and know what happens to the body.

Remember; money is an issue to many who profit from our misery.
RSDSA was started by 2 mothers who had children with similar symptoms. We had surveys to compile different kinds of information to try to determine how we got RSD as well as what we we're doing to help it.
Now we have a corporate paid association, with many doctors on the board of directors.
Let's discuss this openly as to just what is this disease, rather than the name. Maybe after good discussions, we can decide what is the best name,and do a national oz Petition to get 1 proper name.
(Although personally, RSD is getting world recognition) we just need to come together and not let 'them' divide us. Let's bring symptoms forth...

I will start with my symptoms
 

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 :rolleyes:

Bram.

Still think FIIKS is the best name for it

LMAO... ahhh

Tashi,
Could you share a bit more about the nasal anesthesia you mentioned? Do you know if there is a name for the "procedure" that I could look up? Also, I don't know what a 1 sided 6 in cutip is. Any other info you could share would be great-it sounds like a great tool to use along w/ OT.

BG

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