I may have came on a little strong for you guys but I feel it would be nice to have some famous people involved in our fight as they do for Cancer, Parkinson, Alzeimhers. I would like to see them fight for RSD and Fibro since they both hit so many people and we aren't getting the funds to do enough research.

I still say though that Paula Abdul is a bad example of a famous person. I have never seen her on tv that she acted normal. Fox News yesterday was discussing her and said they thought she had more then just coke or pepsi in the cup she drinks out of on American Idol.

I have seen 4 friends get addicted to drugs from having Fibro and Back problems. One's name was just in the paper Monday on a 15,000. bond for causing a fight in a hospital. I watched her and her sister both get so hooked that they are always so drugged up that they shouldn't be driving. I saw a 64 year old friend get that way. I have another friend that got that way and thank goodness he got off of his meds after back surgery and is now back to work.

I have RSD and too many other things to mention and my Dr. and I were discussing Paula Abdul yesterday and he was talking about how she use to be such a beautiful woman and what went wrong.

I know we are all in pain, I know we have to have some heavy meds. I'm on Methadone and as I told him I never want to get to the point that I have seen these other people get too. I've talked to people on the phone that are so drugged up you can tell it.

I'm sorry if I made some of you angry but I just don't agree with what she is doing with her life.

Ada

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.

Hi Lisa,
I'm Cathy and just joined NeuroTalk (thankfully) last week.

I really don't have any opinion about Paula Abdul. I want to thank you for the explanation about how pain medication works. I can't take any of the drugs that have codeine in them (which is just about all of them) so doc gave me darvacet (propoxy) and I've always said that I've been aware that the pain is there, just that I don't seem to care as much that it's there. The explanation that pain meds work if taken correctly in the area of the brain that senses or feels the pain is terrific. At least I know that some days when I take it, that is the reason I can still work and get things done.

So thanks Lisa for passing on that info. It's helped me and I'm sure others. We can read all the literature and side effects, etc., but it's only in experience that we become truly knowledgeable and that leads to the blessing of being more compassionate toward our fellow sufferers. There is truly a reason for everything, even if we cannot see it currently.

Have a wonderful day Lisa and all.
Cathy

Hello everyone,
Although I don't post often I do read the post and felt I had to respond to this thread.


I have mixed feelings about Abdul and wish that if she does have RSD, that she would become a spokesperson for RSD if she would be serious with her discussions. Another person that might be good to speak about RSD is Barbara Mandrell as her husband has RSD and this is why she left Tenn to be with him and take care of him. She would be a great asset to the RSD community if she would go more public about this.

I would like to say that I have had the pamidradate infusions that Paula was given and they did help tremendously with my burning and sensitivity. I have these infusions every 2 1/2 - 3 months as 3 day/outpatient treatments. My Dr began with these infusions after a friend of mine that was going to him ask about the treatment Paula had reportedly had. Our Dr called Abdul's Dr and received the information ref the infusions and now is giving them in our area. The treatment DOES reduce the burning of my RSD which is now full body. I would say it reduced up to 50% maybe more at times. It has also helped with the sensitivity that I have in my extremities. continued to have flare-ups due to weather. The only adverse reaction I experienced with these were flu like symptoms for the 1st day or 2, then it began to really reduce the burning.

I wish Paula had spent more time promoting these infusions and letting people know just how much they helped. When you can get up to 50% reduction of the burning it helps both mentally and physically. With reducing both it enables you to do more and be more active, not to mention being able to reduce meds if at all possible. This is my goal, to hopefully reduce my meds which hopefully will make me more alert and less side effects to deal with.

I strongly recommend these infusions to anyone with RSD, it seems to be much safer than some of the other options we have available to us at this point.

My WC ins did pay for these each time I have had them. I was told it was doubtful they would but they did. The cost was approx $1,300.00/day X3 days. Which is also cheaper than some of the other meds and procedures available.

I hadn't heard about that before - thanks for posting it.

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

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

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

Hi,
I live in Los Angeles and wanted to know how I could get involved in RSD awareness.
Thanks,
Moselle

PM me Mo

Peace
GnP