Hi Everyone,

From what I heard they changed the name because of the spread.

So you get the DX of RSd or CRPS which I have had a least 40 MD's in agreement with it. When I got DX with this my husband flipped and made me several MD's appointments. He has Docs in his family.

But what is the root of the problem? If they don't know the root how can you get proper treatment, of any kind.
Love, Roz

Buckwheat,

From what I know of this, they changed the name to reflect the fact that nobody really has a clue what causes this stupid disease. The name "reflex sympathetic dystrophy" assumes a cause---dysfunction of the sympathetic nervous system. While that most likely plays a role in the underlying pathophysiology of the disease, it's irresponsible to assume that it's the direct cause when doctors now suspect that there are more factors at play.

As for how they can treat without knowing the cause, the answer is pretty simple: trial and error. The truth is that the cause of most diseases are unknown. The only diseases that doctors can really claim to understand are infectious diseases, and even then the workings of the immune system can be a bit of a mystery. Nobody knows what really causes things like cancer or heart disease either...it's the same as with RSD. Why does one person get it and not another? The answer is too complex to fully understand right now---a combination of genetic and environmental factors are likely, but so little is still known about genetics!

I've had lots of interesting discussions on this with doctors. One doctor in particular discussed it with me ad nauseum. It was one of my grandpa's favorite rants...about how medicine had advanced so far since his days in medical school, yet the understanding of disease had remained essentially the same for those 50 years.

-Betsy

i love love love your answer .... no one knows! that is it!!!! and treat what comes with whatever works ... and it may or may not spread! more honest words were never written!! joan

Bill use to get frustrated and ask why Drs. weren't able to help me.

I just don't think RSD is being researched enough. It's way back on the back burner due to other medical issues such as cancer, Alszemiers, MS, and so on.

I saw in that article that Lisa said RSD is rare. I don't believe it is all that rare. There are too many people popping up on here everyday that has.

The root of the problem is that if they found a cure for the RSD and all of the others above then the Government couldn't rip off people and keep them down. The Pharmaceutical companies wouldn't be getting rich off of us, the Drs. wouldn't either. If they ever found a cure for any of these serious illnesses, it sure wouldn't be put out there for the world to see.

I hope you are feeling somewhat better these days.

Betsy is right, it is trial and error. When I first got it, I swear I would have been a guienna pig for any Dr. out there. I even ask my Dr. and PCP to find some test being done and stick me in them. If they hadn't said no, I wouldn't have cared what anyone done to me. I did have a lot more going on with it also. The TOS is a hard one for people to go through also.

I was wondering, how does anyone find out what research is being done on RSD today.

Ada

Joan, thanks. It's always nice to be agreed with!

Ada, I agree that research is important. We certainly need more of it, and more monetary resources as well! Unfortunately, the point I attempted to make was that nothing is really known about ANY disease. RSD is no different in that respect. There is little to no concrete knowledge about the actual mechanisms of just about every non-infectious disease known to man.

I personally think that the key lies in further genetic research. The problem with RSD (and many other disorders, again excepting infectious diseases and also confirmed genetic disorders that can be pinpointed to an actual chromosome) is that because we have no concrete pathophysiological knowledge, this syndrome is most likely caused by different processes in different people. Because of that, any research into treatment is likely to have the same effect as always---some respond, some don't.

Of course, more research into treatment is always a good thing. The more possible treatments that are found, the more likely that more people will be helped. The issue is that until they've identified the direct causes of RSD (and, as I said, there will be more than one), there will not be treatment available to help everybody. It will be a trial-and-error process until doctors can test for and pinpoint a specific problem.

It all sounds kind of frustrating (it is) and depressing. However, there IS research going on. The RSDSA sponsors some, and along with RSDHope is financing research into mitochondrial DNA in RSD patients. Also, the International Research Foundation for RSD (founded by doctors who have been on the RSDSA's advisory board) funds research. I've also read many announcements for clinical trials, which may turn out to help some people.

The problem is that RSD is complex (hence the name "complex regional pain syndrome"), and research takes time. Plus, it's entirely possible that we're not technologically advanced enough yet to figure this out. I have to believe that we're getting somewhere though!

For instance, when I first got RSD in 1994, it was the norm for people to go years without a diagnosis. Now, most people (but unfortunately not all) only seem to go a few months. That's still not acceptable, but it's better. Also, back in the day, there were many more doctors who were convinced that RSD was a psychological problem. Now, Dr. Oaklander's research has disproved that, and there are many more doctors who have learned about this disease.

Again, it's still not a good situation, but it's slowly improving. I only hope it continues to do so, and I believe it will.

-Betsy

I wrote this and rec'd the reply....the links were usless. Note:it is suposedly a "research " branch??? It took me in a circle that led nowhere....
At least I tried I guess! *scratchin' head*

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From: Jan
Sent: June 27, 2007 3:39 AM
To: support@researchnet-recherchenet.ca
Subject: research?

Is there, in Canada, any research done for RSD-reflex sympathetic dystrophy, or, also called CRPS- chronic regional pain syndrome ?

And if there isn't, WHY?

I have the disease, live in Alberta, and so many Canadian doctors don't know about this disease.

We can't get treated properly by our doctors is they don't know about it!

How do we get the medical government to do research on this disease?

Thank you for your time.

Jan
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