NeuroTalk Support Groups - RSD on Dr Oz show TODAY w Paula Abdul

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - RSD on Dr Oz show TODAY w Paula Abdul (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/170176-rsd-dr-oz-paula-abdul.html)

I have a few comments regarding your comments.

“Alright-- honestly you guys probably don't think I get it at all. I do really see where you are coming from.”

I don’t speak for others who suffer from CRPS but you have no clue where I am coming from.

“ I also didn't come here to get sympathy for Paula. I really don't think she wants it (otherwise she'd talk more about this)”

How would a Paula Abdul groupie know what she thinks or wants?

You speak of the “Newfound awareness” brought by Ms Abdul. Really? A fifty year old woman who is in top physical condition and can do a triple pirouette and a split. This new kind of awareness is having many I know tell me to “try harder” and I can have the kind of CRPS that Paula has. Many of my friends have suggested I drop my state of the art tDCS treatments and take Enbrel instead. Amazing since all of my family and friends were fairly well informed about my illness and treatments. Boy what a difference a celebrity can make!

“ I can't even understand what something like ice has anything to do with it”

You said you wanted to help. I have a few suggestions if help is your motivation.

1) educate yourself about the debilitating consequences of using ice with CRPS. You might then wonder if a doctor who supports the use of ice, really know how to diagnose CRPS. Ditto for prescribing Enbrel for CRPS. Additionally, you might wonder why a celebrity who claims to have a diagnosis of CRPS is not seeing a top CRPS doc.

2) Do some basic education about the physical requirements of the kind of conditioning Ms. Abdul must maintain to perform intricate, complicated and demanding dance moves. Autonomic system dysregulation that accompanies long-term CRPS makes those kinds of movements highly unlikely.

That is why I and my fellow CRPS patients do not have and likely will not have the less “harsh” variety of the illness.

I think you summed things up pretty well yourself.

“ I am aware that I could be doing better things with my time than focusing on the lives of celebrities.”

Like many online forums there are automated bots that index posts for the various search engines. When someone does a search for something or someone - the results come up showing where to see info about that subject.
So readers & new members can come from anywhere.

The main reason I'm posting on this thread is to remind all that we are about being supporting all of our members , even the ones you may not agree with.

We hope that we don't have to edit, close the thread or remove posts, but we will if needed.

Member already stated - ['ll most likely take my leave now though-- I REALLY don't want to upset anyone]

Thank you

We can't pick who will be heard sharing their experiences on tv. I think it would have been more responsible for the show's producers to include a couple of medical experts on this than to only feature one person under the tabloid title " Shocking Confessions." Too bad the show missed an opportunity to really inform its audience/viewers.

I haven't posted for 2 years+, since spread made it more difficult and painful. My RSD is now in both hands, arms, ears and left foot and leg. I now use a power wheelchair and can no longer tolerate going out due to increased pain, and new pain with noise.

Wishing everyone relief and happiness,

Alright guys...I HAVE the solution. One of US just needs to BECOME a celebrity and THEN they could be our spokesperson. :)

removed per op request

Who do you consider the top CRPS Dr in the world?

Quote:

Originally Posted by ballerina (Post 882203)

The show has certainly brought the kind of awareness that I could live without. Abdul still performs and adheres to a rather grueling schedule. She still choreographs and dances extensively. I have been following her activities for several years since I am a former dancer. Her age alone is a prohibiting factor in her ability to dance.

One of my neighbors suggested that I could return to dance if I took the drugs and vitamins that "cured" Paula.

I have received similar phone calls from three different friends. One friend said, "you are tough, with hard work like Paula you could return to dance."

Another suggested that I get a personal trainer. "If it worked for Paula it could work for you." I asked her if two years of PT counted?

The other friend suggest I visit Paula's doctor. Hum, seeing the top docs in CRPS in two states, having an excellent team in my own state, and being on the wait list for the top CRPS doc in the world for two years is just not good enough-I need to see the doc no one has ever heard of have a look see at me.

I notice there was no mention of Paula being seen by any of the well known Top Docs in CRPS.

Knowing first hand the kind of daily intense conditioning it takes to be able to keep dancing, particularly at her age, and that Paula has not missed to many beats in that respect I wonder???????

Of course I have not met all people with CRPS but no one I have either met in person or become acquainted with on forums could be in the kind of physical condition and perform in the way Paula does.

"Work Harder" Really????????

Paula is reported to have a "mild case" of CRPS.

Any body out there have that kind of case of

Quote:

Originally Posted by Lhlowe06 (Post 907833)

Any body out there have that kind of case of...

I met one person who has RSD in his arm. Has had it for 10 years and still works. He's told me he has never had a spread issue. My wife's RSD started in her broken wrist and has spread to all her limbs.

My thought on this is ... no one person with this beast has the exact RSD as another, we are different from each other there for how this beast affects us is different. I had an unexpected pleasure of speaking with a family member that has been disabled for years and no-one knew exactly why.. Until I was dx,d with RSD did it come out that this is what she has as well. she was embarrassed to admit it. she was also affraid that others would nit pick and accuse her of being a fraud(as many of us are called) her father was floored when he spoke with me , he said that his daughter( my second cousin) has this and she never explained what it was. when I spoke with her so much came out. the rsd she has affects her legs and arms but she can still run just not use her arms. So the question goes out. that if this is possible for my cousin is it possible that Paula has RSD just the same?? we know what it is like to be criticized by family and friends and people that do not understand this beast. are we being too critical of a star that isnt exactly comfortable with being upfront in regards to her issues. I dont dare compare my pain to anthers. its not a fair measurement. who am I to decide what pain somewhat else feels . sooooo much pain in this world I just wish we could make it all better . we are here for each other. thank god for that and thank god for all of you. ..

Saw Paula Abdul on the Dr Oz show. Watched it on his website and it was amazing. I have been looking for alternatives to meds and she says B12, Omega 3s and change of diet, including no caffeine, which will be hard for me. You should check it out on Dr Oz's website. Look for episodes and then Aug 27. Blesings to all of you. =)