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

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 :rolleyes: 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.

Thanks Bram
Yes I sussed the Rsd and Complex RPS name change
But the Chronic regional pain syndrome is a new one on me do you know if it's just the same thing?

Sorry it's so short I'm thumb typing on this touch pad thing and hands are throwing flames out

Take care

My finger pads are getting very sore now too...:rolleyes:

It is just the same thing with a different name. There's arguments about both acronyms, and whether they are an accurate reflection, but there's a lot of opinion and subjectivity about it - I'm sure it wasn't an easy decision to change the name, but CRPS was felt to describe it more fully. Obviously not everyone agrees!

Hope your hands cool, going to give mine a rest now. Flaming Fingertips is about right...

Take care,

Bram.

According to Dutch researxh there are 2 variations of RSD/CRPS ype 1 and the second need to be treated differently.

Do you think they used the term "chronic" instead of "complex" in reference to the time you have been enduring this condition/disease? I've noticed many doctors will add "chronic" to diagnostic terminology when the condition/symptoms last longer than 6 months. Certainly it adds to the confusion but, I wouldn't lose any sleep over it as the ICD billing codes (at least here in the US) is what is relied upon more than the actual diagnostic term itself. You can ask your doctors billing office or insurance company what diagnostic ICD codes your doctor is using and then look it up to see what it refers to, to give you peace of mind or a better understanding of what your doctor is referring to by the name he/she uses.

The 'Complex' part refers to the fact that it is a disease with many components, symptoms and effects on sufferers, andinvolves more than one system in the body. CRPS is a 'Chronic' condition because it is long-term (expected to last years).

As in the difference between pain types - 'acute' (short term) and 'chronic' (long-term).

Bram.

Thank you all for the replys I think it must be as you say the chronic just means long term.
I have now been officially dx with this crps although it has been mentioned several times.
It was pain management that made the dx and prognosis is it can't be cured just help trying to control pain.
It takes a bit to get your head around this as to why it can't be cured,I have nerve damage small fiber through this.

Thanks all

To me it doesn't matter what they call it. I just want to be treated appropriately. I don't want drs saying its all in my head or Im a drug seeker. I want to be treated as a person with a very painful chronic disorder that needs to be taken serious. Yes its complex, yes its chronic. Instead of them bickering about names they need to figure out how to treat it effectively. That is my concern. Call it CRaPS or what ever just treat me appropriately like you would treat someone with arthritis, or some other chronic disorder. Don't treat me like a pariah, or drug seeker. I would prefer not to take "drugs" to manage this pain. I would rather be able to get up in the morning and say wow today is going to be a good day. Not well crud I'm already hurting so how many meds will I need to take today and sorry sweetheart we can't go to the park because mommy hurts really bad. I want to take my sons to the park and climba and swing and slide with them. So tell the researchers to stop haggling on a name and research and find a good treatment that helps me be able to be with my children.

there have been over 39000 trials worldwide to find a cure for cancer without doing so for RSD/CRPS that number is 74 so I'm sorry but until every medical professional and every goevernment in every country knows what this is there is no chance of a cure.

Hi again Kevscar. I agree that more awareness needs to be made of this horrific disorder. I have had so many drs make my rsd worse because of lack of knowledge of it. Since November is RSD awareness month, I am passing out flyers from RSD Hope to drs offices and others that I think may be able to help find a cure for this disorder. It can't hurt and hopefully maybe if we all try to spread the word it may help increase the chances of finding a cure. Take care my friend.

I have done this with the Dr.'s who treat me but wow You GoGirl! I should order more and be more proactive again

Hi Tashi
 

When i first had my condition i look it up on the net and it was RSD
then went to speacilist and he told me it was CRPS because RSD meaning
Reflex Sympathetic Dystrophy that they have now decovered that there is
alot more than the sympathetic nerves involved and that why it is now called
CRPS

Myself i could not give a damn anymore they can call it what they want
I have plenty of nick names for it Like STALKER because you never know
when its going to grab you and take hold of you most of the time right when
you want to do something or go somewhere

Mike Crps Entire right side head to toe seven years from RSI from milking cows

Rock on Peace out MIKE NZ

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