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 02-16-2007, 10:12 PM #11
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I hadn't heard about that before - thanks for posting it.
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Old 02-18-2007, 12:31 PM #12
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Quote:
Originally Posted by LisaM View Post
A GOOD pain doctor will control your pain to a semi-tolerable level, but not have you so drugged up that you cannot function, or APPEAR to be on drugs.
Ditto!

Some people have "drugged up" reactions to some medications, even if they ARE in pain. Some people cannot tolerate certain medications, and their body will react in this way.

If this woman DOES truly have pain, sounds like it needs to be adjusted or changed!
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Old 01-19-2008, 07:48 PM #13
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Default RSD Nightmare!

I was diagnosed with RSD in 1999, and it was unbearable. The doctor told me they had never seen the skin changes so quickly. But the fast skin changes was lucky for me, that the doctor recognized the RSD and started immediate Stellate Ganglion Blocks. I have some damage to the bone and muscle, but not too bad, and I had a severe case of RSD that went into remission with the blocks. I now do not have to take pain medications, except for over the counter, and I have been truly blessed. What I do not understand, is that if Paula Abdul has RSD like I had, there would be no way for her to work (it is too hard to just breathe and not commit suicide) If it is in remission or cured as she says, why all the drugs?
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Old 01-19-2008, 09:35 PM #14
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Originally Posted by LisaM View Post
When you see someone on pain meds who ACTS stoned, its eithr because they MAY be too highly medicated, or they don't have pain and are taking the meds recreationally.

That's why, my pain doc says, when he sees his patients, if they appear to him to be non-functional, as he would say Paula Abdul is, he would reconsider either A). their dosage, or B). the fact that they have pain at all.
Or perhaps they have no tollerance for that particular drug

I want to welcome Cathy and Bitty to the group, nice to see you posting.

An HELLO Ness you have been missed my friend.

Hugz all,
Sandra
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Old 01-20-2008, 03:08 AM #15
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Hello I hope everyone a pain free day. I do not know why this was brought up besides she is on tv but we should not judge her if she has or does not have RSD or anything else to say drugs are causing her to be out there would be wrong for all us to do.
Paula may be the type of person to be out there as she was a cheerleader and a singer so her being hyper or just out there would not be strange and she may just be strange. Again to say some may need their drugs changed is wrong as I take allot and I may be out there too as I have been but I need the amount I'm on to function somewhat normally which would be just being able to handle my day.
I'm happy to hear about remission and being caught early too we all need good docs like yours
What one person takes for relief may not be what another takes nor needs,
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Old 01-20-2008, 05:22 AM #16
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Quote:
Originally Posted by LisaM View Post
I agree, Ada. If I didn't tell ppl that I was on fentanyl and percocet on a daily basis, nobody would know. A GOOD pain doctor will control your pain to a semi-tolerable level, but not have you so drugged up that you cannot function, or APPEAR to be on drugs.

The way my pain doc explained it to me, pain medication works with the part of hte brain that is responsible for feeling and sensing pain. Those of us who are really in pain and who take pain meds, won't appear "drugged up" because the drugs have a "purpose" in that area of the brain.

BUT

Those who AREN'T in pain, but take the pain meds for recreational use WILL appear "drugged up" because the drugs DON'T have a "purpose" in that area of the brain. Therefore, the "purpose" becomes "getting high."

When you see someone on pain meds who ACTS stoned, its eithr because they MAY be too highly medicated, or they don't have pain and are taking the meds recreationally.

That's why, my pain doc says, when he sees his patients, if they appear to him to be non-functional, as he would say Paula Abdul is, he would reconsider either A). their dosage, or B). the fact that they have pain at all.



How absolutely correct Lisa. Anyone behaving stoned whilst taking pain meds is overmedicated for their degree of pain.
I am on large doses of narcotic and not a soul would know as I am as alert as the next person.My pain soaks up what I take as I take exactly what I need.

I am less forgiving of Paula than some ---any 40+ women coming onto a contestant half her age because she was "out of it" is not a role model to me.
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Old 01-20-2008, 09:08 AM #17
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In a past discussion about Paula Abdul’s behavior, I suggested that it might be possible that her behavior might be the result of ketamine use, whereupon some members who had used ketamine said that they didn’t experience the kinds of feelings and emotions ms Abdul demonstrated on various TV clips. The fact that they didn’t doesn’t automatically mean she was not under the influence of this drug.

Ketamine is classified as a hallucinogen, or euphoric drug, and is a popular recreational drug among those who can get it (mostly by burglarizing veterinary clinics, where this medically expensive drug is used to treat cats and dogs), as is marijuana, but may be an even more pleasant experience for some users.

According to Drugs.com, here is an excerpt from an official FDA warning about ketamine:

SPECIAL NOTE
EMERGENCE REACTIONS HAVE OCCURRED IN APPROXIMATELY 12 PERCENT OF PATIENTS.
THE PSYCHOLOGICAL MANIFESTATIONS VARY IN SEVERITY BETWEEN PLEASANT DREAM-LIKE STATES, VIVID IMAGERY, HALLUCINATIONS, AND EMERGENCE DELIRIUM. IN SOME CASES THESE STATES HAVE BEEN ACCOMPANIED BY CONFUSION, EXCITEMENT, AND IRRATIONAL BEHAVIOR WHICH A FEW PATIENTS RECALL AS AN UNPLEASANT EXPERIENCE.

I suggest that thisi s a pretty good description of what I saw in those clips, and that she may not one of those who feel the experience was unpleasant.

I think that if I was making great money in almost every show business enterprise I tried, and if I were warned that my career could come to a sudden end.either through disability or via disclosure that I suffered from an incurable and controversial disorder, I would probably try anything to suppress the symptoms and deny the disease.

Her announcement that Embril helped relieve her symptoms is not the first time this drug has been mentioned in RSD literature, but thus far that drug has only been mentioned in case studies, which aren’t widely regarded as reliable by medical professionals. In the period since I first saw it mentioned, I haven’t seen it widely adopted as a treatment of choice for RSD, and suspect that she may have benefited from placebo-effect that ended.

Embril is about as dangerous as drugs get, and if I were Paula Abdul I would switch to ketamine the day after I first learned of it. Unilke Embril, ketamine is widely advertised as effective against RSD, and its side-effects are not nearly as dangerous, so I would find a doc willing to give me enough ketamine to sustain my career. In fact, if my RSD was as severe as it is for many of you, and if I had the money, I’d look up a doc for me: I would prefer euphoria and activity over pain and disability any time.

One can hardly turn on a cable news channel without learning about another “celebrity” being prescribed dangerously high doses of drugs, so I don’t think it would be difficult for someone in her position to find a doc willing to give her enough ketamine to keep her symptoms under control (and hopefully not as much as some might prefer),

I’m not a Paula Abdul fan: I’ve never watched American Idol, and the only music video of hers that I saw was one that my son pointed out was a total rip-off of Bob Fosse’s “FlyAir-rotica” from the movie All That Jazz. It was, except the dancers kept their clothes on.

I have also posted in the past that ketamine “studies” have been less than honest, so I don’t have a horse in this race, but I don’t think she deserves condemnation until we know more (which we may never learn). I can’t condemn her for doing something I would do.

I think that her later denial of RSD, combined with a few incidents that could, according to the FDA description, be the result of ketamine abuse, makes her an unlikely candidate for spokesperson for RSD, but that probably isn’t her goal anyway…Vic
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Last edited by Vicc; 01-20-2008 at 09:30 AM.
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Old 01-20-2008, 10:20 AM #18
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First of all if any one has any doubts about Paula's drug use please watch E's "Hollywood True Story" on the woman- all doubts will be erased.
The woman can barely make a complete sentence for any part of the interview and she has the twitches and head turns of a long term(opiate) abuser.
I live in Los Angeles and it (the town) as well as the RSD community itself are both very small indeed .
I know her and we have many friends , doctors and therapists in common.
She does NOT want to be a spokesperson for this disease-NOT going to happen .
If she were coherent it would be an excellent opportunity to show that with proper supervision and care( and many assistants) one can enjoy a full life with some proper pain management.However that is clearly not the case and her "celebrity "is too important to her .
Also,her RSD is limited to a rather small part of her body.Her other pain issues are from disc and other back, neck and other injuries.
I also don't think ketamine is her drug of choice.I have spoken with many doctors on the topic and daily long term use has not been studied extensively
It has thus far been shown to be quite toxic to the liver when taken in that manner.
Having said that support is one thing- There is no reason not to"support" her from afar - without taking it any further .

Here my friends is the GREAT news .
Things are really starting to happen in LA .
A group called "Life Goes on " started by a woman who "had" full body and is still sick with RSD is holding a first ever Benefit at the "House of Blues" in LA
on Sunset on March 3rd(our awareness month!) to benefit RSDer 's who lost everything in the California wildfires.Her long term goal is to open an RSD clinic in order to make early diagnosis and treatment possible for everyone !!!!!!!- and to help with housing and transportation needs etc .Her vision is large indeed !. More benefits are planned and she is getting the word of RSD out which is most important of all - this type of thing will spread to other cities once a prototype exists .She is calling her event "History in the making"
Another group called "Hollywood Cure for Pain " is holding benefits all over the place in Los Angeles .
It is run by a guy with RSD and his goal is to raise awareness for RSD.
Lisa Marie Presley is involved and he is slowly moving up the Hollywood pecking order to get people involved in the cause .
It has grown extensively in it's very short existence an it is this guys full time job.

I will be attending all of these upcoming events and will report back here.
I have asked some friends of mine to play her benefit-fingers crossed- it is a
small venue for them


So things are looking up for our little known but not uncommon disease .We do not need Paula Abdul!!!!

I hope you are all feeling OK

Much pace
GnP
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Old 01-20-2008, 10:40 AM #19
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PS.
Randy -the guy who did the Long Beach Run this year in December is planning a bigger event for next year.( I think Sandel posted about it )Richard Dean Anderson was there along with the" Laker girls".They had great raffle prizes donated .
I just received an email from him and he told me not to be surprised if events like his popped up all over the country !!!!
He is not even afflicted.He is doing all this for his mom - what a guy
RSD awareness LIVES and it is spreading
It is OUR TIME!!!!!!!!!
To quote Randy "THINK BIG "

Much peace
GnP
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Old 01-20-2008, 08:43 PM #20
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Hi,
I live in Los Angeles and wanted to know how I could get involved in RSD awareness.
Thanks,
Moselle



Quote:
Originally Posted by Goodn'Plenty View Post
PS.
Randy -the guy who did the Long Beach Run this year in December is planning a bigger event for next year.( I think Sandel posted about it )Richard Dean Anderson was there along with the" Laker girls".They had great raffle prizes donated .
I just received an email from him and he told me not to be surprised if events like his popped up all over the country !!!!
He is not even afflicted.He is doing all this for his mom - what a guy
RSD awareness LIVES and it is spreading
It is OUR TIME!!!!!!!!!
To quote Randy "THINK BIG "

Much peace
GnP
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