Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 05-22-2012, 10:47 PM #11
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I just read a bunch of articles about this interview. I do not believe we were adequately represented. the responses seem to say that all RSD/ crps sufferers become drug addicts, also how many of us get relief using ice?. granted RSD got aired on a popular show. its a start. I just wish it took more of a front line to beauty tips..
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Old 05-23-2012, 03:11 AM #12
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I just read a bunch of articles about this interview. I do not believe we were adequately represented. the responses seem to say that all RSD/ crps sufferers become drug addicts, also how many of us get relief using ice?. granted RSD got aired on a popular show. its a start. I just wish it took more of a front line to beauty tips..
Dr. Oz prefers to hug, kiss, put on purple gloves and take them off, and illustrate toys that bubble and spurt red colored liquid to simulate blood. His little games with true/false quiz with audience members are pointless. They contain factoids that appear in the newspapers and on CNN.

He eats up all the time of a full hour daily with this trivia. He could well present better coverage of various things, but I believe he does not want to inflame doctors or his advertisers who pay the bills. Imagine people seeing something useful on OZ and going to their doctors who have no clue? Doctors HATE informed patients for the most part. His show is basically useless IMO. The show is like "Let's Make a Deal" come on down... and I for one am tired of watching women slobbering all over him. (the show is basically narcissistic and he just gloats with all that attention). You know he was much better when he was a guest on Oprah. I saw an old rerun a couple of months ago, and it was pretty good.
But his own show? Blech!
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Old 05-23-2012, 06:59 AM #13
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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 CRPS?
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Old 05-23-2012, 12:43 PM #14
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http://robertgschwartz.homestead.com/page7.html

A friend of mine sent me this link- it is a syndrome called "ABC "that has similar symptoms as RSD BUT responds to ice and dislikes warmth. Perhaps this is what Paula has because IF she has RSD I want the kind that she has!!!!!!

Tha Oz show was again very disapointing to me for all of the reasons posted above. He has been asked by many RSD Groups to do a show and has REFUSED all . Paula has -in my opinion- once again done more harm than good for the RSD Community. I pray that no "newby" was watching and went for ice packs!!!!!!!!

Good luck Paula in promoting your beauty products!!!!! Wasnt this the true reason that you did the Oz show??????? Do you REALLY care about us RSDers? How much money have you donated to research etc. !!!!!

My blood pressure is up now so I will end this. Thanks all of you for being here -This forum is the best-Fondly-Carol
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Old 05-23-2012, 12:54 PM #15
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Here is ABC syndrome, again: It is more like arthritic inflammation and PN than RSD.
http://robertgschwartz.homestead.com/page7.html

I recall Abdul was on Enbrel? That is used for inflammatory arthritis and other inflammatory conditions (like psoriasis).

http://www.usatoday.com/life/people/...la-abdul_x.htm

http://www.rsds.org/5/news/2005/rsdsa_response.htm

Has anyone here been offered Enbrel. I don't recall seeing that.
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Old 05-23-2012, 06:04 PM #16
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Quote:
Originally Posted by mrsD View Post
Here is ABC syndrome, again: It is more like arthritic inflammation and PN than RSD.
http://robertgschwartz.homestead.com/page7.html

I recall Abdul was on Enbrel? That is used for inflammatory arthritis and other inflammatory conditions (like psoriasis).

http://www.usatoday.com/life/people/...la-abdul_x.htm

http://www.rsds.org/5/news/2005/rsdsa_response.htm

Has anyone here been offered Enbrel. I don't recall seeing that.
You are so right about Embrel-I have a friend with rhumitroid arthritis that takes these shots. Never heard of it for RSD treatment,
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Old 05-23-2012, 07:22 PM #17
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Old 05-23-2012, 08:33 PM #18
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Default RSD & Magnesium ?

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Originally Posted by ballerina View Post
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 CRPS?
~ ~ ~
Carol,

I'm new here and had to ask and say...

Have your minerals levels been checked? Especially magnesium?

I ask because a friend of mine who has researched medical info for years came across a magnesium deficiency being a cause of RSD...
- He met a woman dx'd with RSD by a specialist... He told her to dissolve a box of Epsom Salts in a warm bath and sit in it... As soon as she stepped in her body pain started to go away... She went back to the specialist who was amazed she did not have RSD a month later...

Iodine & Magnesium deficiencies create many medical conditions...

OR does RSD include many diverse complexities?

Christie
I do find it odd the medical world is not finding cures and relief for conditions today....
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Old 05-23-2012, 08:35 PM #19
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Default ice?

I too was ice?
I am very temperture sensitive. Even have to be careful this time of the year getting into swimming pools! No shocks. Just ease in

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Just watched this. It was okay...always good to have some awareness about RSD. Only issue I had was that the best advice Paula could give was to USE ICE...my jaw dropped and I think I just stared at the tv for a minute in shock. If she had not said that it all would have been fine. Obviously her pain affects her in some ways differently from mine since I rarely have the shooting pains like she was talking about (though the burning pain definitely rang a bell). I wish they had taken some time to talk about how this affects everyone differently and what some of the symptoms are besides the pain. Oh well...definitely some good stuff in there too.

I was happy to hear her suggest reaching out to others online (though I wish the advice she used to demonstrate its helpfulness was something other than "ice is your friend"). Dr. Oz had some great advice about ways to reduce inflammation and to avoid stress. I think that for a show like this it was a pretty good little segment and hopefully it will inspire some people to go online and look it up and to become educated about it.
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Old 05-23-2012, 08:47 PM #20
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Default heels and flip flops

You just can't wear them for long. I finally was able to wear flip flops and was so excited! But after about 1 1/2 years I had to give them up again. But maybe I will be able to again some day.
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BTW...I hope someday I will be able to wear heels again like the ones Paula had on. I miss wearing heels...
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