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

dr oz rsd show
 

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

per op request

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

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. =)

Most important is Paula spread The Word of RSD
 

She seemed so shy and he just kept pounding her about drugs, come on Doc.
She danced around the questions very well I thought.
Most important folks...RSD made the DR.Oz show and we are getting air time, praise God.
I am 21 years living with this circus...came from a sprained ankle in 1991. Took me 4 years to get an answer. 58 doctors later, I found Dr. Marty in Kittanning Pa. He is my saint. By that time i lost my business and the life I knew as a 41 year old single woman business owner.
Did a 16 year Pa. work comp suit and 7 year SSD battle while trying to find treatment.
I do beleive Paula and I could share a few war stories..lol.
Back in the dark day NO ONE knew of this beast. You had to do your own homework to help the lawyers fight for you. And pay them on top of it all...Yeah, it has been a circus. Paula did good for us.
God bless us all, Peace & LUV, Andrea.:D

..So what you are saying is we still havent had any progress. the dark days are still here.

Dark in in the eye of the beholder.
 

Hello, New here and trying to find my way around.

During Civil War times, the wounded were not recovering and dealing with pain, edema and atrophy issue that made no sence to the up and coming medical profession.
RSD was originally called Sudeks Atrophy named after the fisrt doctor to document these bizzar happenings, while trying to help the soilders. They used drugs back then too. Little House on The Prairre tells a tale of such sadness.

RSD is a pickle...are we still in the dark ages? They know they can't fix you so they either throw you to a different doctor or just throw you away after your ins. runs out. In the sixties in California, there were a few documented full recoveries useing LSD. (today it is kenidine or however ya spell it))
That is a Taboo subject however. It was the Hippie days and all drugs made you a junky and the government steeped in cause it worked......least that was what my homework assigment revealed.

My question has always been, how did the medical profession have any reference to state the facts of CATCH IT EARLY...They were experimenting back in the Dark ages too.
RSD was a big up n coming money maker for the System. It just costs more to be in the dark ages these days.
I have a video of a Brain surgury in California aired on CBS in 1998. The nerve problem in his brain was repaired and he had full recovery. He caught it early and his was an isolated case.
This is why doctors are called Practising Pysicians..they are practising.
I mean that with no disrespect to the good docs.
Like any other profession, there are good n bad. These men and women are not God, they are human beings doing a job. They can't always Fix things.

Dare I reveal how many doctors told me that it was all in my head. I didn't have a stroke, I sprained my ankle.......It would make you sick.
However, they are correct. It is a brain malfunction of the Lymbic portion of the brain disturbing and degenorating the Automonic system and functions that control our independent actions and functions. It controlls your sweat, saliva, urine flow, hunger pains, sleep, walking, seeing, hearing, emotion so many things you don't even think of on a daily basis.
Yes, there are other nervous systems in these functions but, they are all connected in the brain and RSD is a Pickle.

God hands out miracles every second of the day, I will pray you get one.
I have had many in these 21 years. Had a mini lighting strick one time, got my bad arm and it was 80% better for a few months. A few is better than none at all.

My best thoughts to leave you with are:
Educate yourself about the functions of the brain. Look at the mechanics of it and the different systems and what they do. Understand that the medical system is there to help, but only God can fix things once they are so wacked out.
If they would operate on these areas to try and fix you, they would have to dysect you so badly that you would not make it off the table.

Try not to harp on how badly the system angers you, those type of thoughts stir up The Lymic System and cause more pain thru the emotions.
If you have added issues of with a comp carrier or Social Sec. that burden creates a world of confusion and hurt. If that be the case, again, educaed yourself and learn the game so that you can be a good player of the game.
Unfortunatley, that is what it is--- and so much of our greif and pain has MONEY as the bottom line.
Are we in the Dark Ages? NO We are living in a faithful time when all is possible thur self motivation, knowledge, and Faith.
You have to change your thinking patterns and it is not easy or swift.

As for treatment I prefer Alternative Care. Hope this has helped you some, and I know I have not given you any magic answer for how badly you hurt.
It steals your life ...if you let it. Keep Truckin" and be good to yourself.
Peace & LUV, Andrea
:cool:R.S.D from Mars with L.U.V. Lending Unity for Victory.

Please do take your leave because you just can't possibly know what you are talking about if you don't have RSD or at the very least have a family member or very close friend with RSD. TRUST ME, PAULA DID US NO FAVORS.

Paula on Dr Oz
 

I personally doubt Paula has CRPS. She stated that she used ice and it helped her pain. Really???