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 09-03-2010, 09:44 PM #21
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Originally Posted by RNcrps2 View Post
I just refilled my oxycontin and luckily got OC.
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Old 09-05-2010, 04:53 PM #22
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Where you from?
I am so disappointed with the new formulation on the OPs... I have been on the original formula the last 2 1/2 years and now have been able to have a life back. I just got out of the hospital with another back surgery on the August 31st. During my stay in the hospital I have no pain control from a dilaudid drip but as soon as they put me back to oral meds OC 80s the pain subsides. Of course with the help of break throw meds. Unfortunatly they could only give me percs for breakthroughs as roxys are not an option due to new regulations. Once released I filled my script and got the new OP80...what a joke of a med. Constant headache since taking, constant pain.
I would have to say the new OPs are far less potent as the originals, not to mention the polymers that have been added. Do you think they have researched the results of plastic in the human body long term?! Of course not but since this stops abuse I guess us legitimate users have to suffer more long term problems! This will be followed up with a class action lawsuit once people start dropping like flies from toxicity from plastic polymer. Give it 5 years max before we start to see the major propblems from large amounts of polymers injested from OPs.
As far as abuse, the DEA is using this as population control! Watch, they will let the people and want the abusers to switch to H. Then the government will release a huge load of bad tar and let the death toll rise and call it Accidental Overdoses! Way to control population and screw the people...got to love our country!
Sorry, I am just one ****** hurting patient that again has to find a way to survive in life again rather than be productive!
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Old 09-05-2010, 09:38 PM #23
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I am more then with you as are most of us on this issue Prue. The way there screwing us over is atrocious! You have every right to be angry as hell with the rest of us as this is complete BS. I do have one question what level of Dilaudid were you on in the hospital? 2mg bags are the most common. Thank you for posting and hear from you soon





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Originally Posted by Prue View Post
I am so disappointed with the new formulation on the OPs... I have been on the original formula the last 2 1/2 years and now have been able to have a life back. I just got out of the hospital with another back surgery on the August 31st. During my stay in the hospital I have no pain control from a dilaudid drip but as soon as they put me back to oral meds OC 80s the pain subsides. Of course with the help of break throw meds. Unfortunatly they could only give me percs for breakthroughs as roxys are not an option due to new regulations. Once released I filled my script and got the new OP80...what a joke of a med. Constant headache since taking, constant pain.
I would have to say the new OPs are far less potent as the originals, not to mention the polymers that have been added. Do you think they have researched the results of plastic in the human body long term?! Of course not but since this stops abuse I guess us legitimate users have to suffer more long term problems! This will be followed up with a class action lawsuit once people start dropping like flies from toxicity from plastic polymer. Give it 5 years max before we start to see the major propblems from large amounts of polymers injested from OPs.
As far as abuse, the DEA is using this as population control! Watch, they will let the people and want the abusers to switch to H. Then the government will release a huge load of bad tar and let the death toll rise and call it Accidental Overdoses! Way to control population and screw the people...got to love our country!
Sorry, I am just one ****** hurting patient that again has to find a way to survive in life again rather than be productive!
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Old 09-06-2010, 03:02 AM #24
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Each person is different it seems you and gabbycakes are Very sensitive to higher pain meds effects. I do agree why most doctors don't prescribe it because usually they feel its to much for you. But some of us are in a different field from you where even Dilaudid, Oxycontin and Methadone are not enough. Then to make things even worse we lose the power of Oxycontin in a decision to hit the addicts and caring less about the actual most important people the patients. Sadly thing is there so stupid because addicts are going to still abuse it so the only ones there hurting are us the users that are actually prescribed. To switch peoples meds and make something that not only is weaker but making a lot sick on top of there troubles all ready, is horrendous and mistreatment of the patients well being. I know people just like you and gabby that are sensitive and some even more to the point even very weak ones make them sick as hell. But you cannot regulate what others should do unless you have been in their shoes.
Purdue screwed up big time and someones gonna sue them over the fact of making them sick and misleading info. Purdue will regret there decision in time.

As a side note to those that were on the Oxy and are having trouble now with these worthless OPs my recommendation would be to switch to Dilaudid or Methadone. Dilaudid in higher amounts is a wonderful med.

Wanted to clarify my comments in regards to the Oxycontin dispute. First Oxycontin is/was one of best pain control medications and I have taken it and honestly miss it and I never had any problem taking it, it was my Pain Doctor who would not continue to give it to me so if I wanted to stay with him I had to switch. I felt his reputation and what he was saying he could do was better for me then the oxy and it was the correct discision for me. I also don't get how Didaudid is compared to oxycontin, one is a morphine based and not time release and oxycontin is time released, that is where the danger and abuse comes in, and oxy truly is just a time released percocet without all the acedaminaphen(tylenol). And methadon is a man made product again not time released and works in a completely different way. I was told its not a breakthrought type of drug and needs to build in your system before it truly begins to work. I'm not a doctor or pharmacy spec. but I have been at this for 6-7 years with 7 surgeries many added parts to my arm and 3 - 5 day ketamine inpatient infusions so I think I have some experience in the area of pain medication. I also go to a very good doctor many of you know him and have asked me about him.

It's truly ashame that because we or most of us are on medication managment we really don't have any control of our destiny. We are controlled by the FDA and have to deal with the consequences of irresponsilbe people when it comes to pain drugs. That is truly why the oxycontin takers who really need it are having a problem it's really not because of the FDA or Purdue, honestly. I hope at the end of the day everyones pain is under control and feels secure once again.

Good Luck,

Gabbycakes
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Old 09-06-2010, 09:54 AM #25
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My response you quoted what not only to you and if your on a medication if dropped its for one of 3 reasons either its effectiveness wears off/ no need for it, your allergic, or your doctor feels your gaining to much of a dependence or adverse effects from it. Dilaudid is another potent drug from the opiate class. 4mg of Dilaudid is equal to that of 20-30mg of Oxycontin so one can quickly see with higher dosage you exceed Oxycontins strength. Dilaudid as well has a longer effect over the day then Oxycontin. A lot of RSD patients find relief with use of this drug. Methadone is another and is extremely potent it may take longer to effect but is worth it completely. Think of it as a chart at the top you have methadone and then under you have Dilaudid in higher doses as well as higher end Fentanyl (patches and pump) then Oxycontin 80mg. I have been in this field for over 7 years now and have been to quite a collection of specialists as well as through the med line. In regard to the point of whose fault it is while its reckless and childish of the abusers its the FDA that needs to be responsible, just because people abuse items does not mean they(the addicts) should be the ones we base our choices on. As the FDAs responsibility is to take care of us not the addicts. The problem is while physical therapy and no medications does work well in some cases and those others that can get away with blocks, they are a world of difference from those of us with internal and internal full body. Once your RSD reaches the point of control over your body even to the point of causing respiratory failure there is no question that meds are a must its just the hard job of trying to find a level that works enough. Ketamine is a complete joke as most of us know. If you can work with nothing I'm extremely happy for you gabbycakes seems your a fortunate remission, but unfortunately not all of us have that ability.




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Originally Posted by gabbycakes View Post
Wanted to clarify my comments in regards to the Oxycontin dispute. First Oxycontin is/was one of best pain control medications and I have taken it and honestly miss it and I never had any problem taking it, it was my Pain Doctor who would not continue to give it to me so if I wanted to stay with him I had to switch. I felt his reputation and what he was saying he could do was better for me then the oxy and it was the correct discision for me. I also don't get how Didaudid is compared to oxycontin, one is a morphine based and not time release and oxycontin is time released, that is where the danger and abuse comes in, and oxy truly is just a time released percocet without all the acedaminaphen(tylenol). And methadon is a man made product again not time released and works in a completely different way. I was told its not a breakthrought type of drug and needs to build in your system before it truly begins to work. I'm not a doctor or pharmacy spec. but I have been at this for 6-7 years with 7 surgeries many added parts to my arm and 3 - 5 day ketamine inpatient infusions so I think I have some experience in the area of pain medication. I also go to a very good doctor many of you know him and have asked me about him.

It's truly ashame that because we or most of us are on medication managment we really don't have any control of our destiny. We are controlled by the FDA and have to deal with the consequences of irresponsilbe people when it comes to pain drugs. That is truly why the oxycontin takers who really need it are having a problem it's really not because of the FDA or Purdue, honestly. I hope at the end of the day everyones pain is under control and feels secure once again.

Good Luck,

Gabbycakes
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Old 09-06-2010, 11:46 AM #26
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Hi, I am new to this forum, and like you I am in pain and not pleased at all with the oxycontin OP. I had mine refilled four days ago. I take methadone for breakthrough. I do sometimes have flare-ups with pretty bad days of worse pain. I thought maybe I was having that at first, then it hit me that it was because of the change in the medication. I have had four back surgeries and have low back pain that goes into my hips and down my legs. I've placed a call to my doctor today. Maybe he'll change my medication.... I don't know. Think I'll call Perdue too. I appreciate the fact that it's to prevent people from crushing it. I don't do that. I just want some quality of life afforded to me by being without horrible pain.
Best thing to do is to call your doc and let him know. I'm sure he is getting a lot of calls on this problem. He could increase your dose or change your medication.
My hubby also takes methadone for breakthrough pain, an UNGODLY amt of it. The 80 mg OC's are also at all time high, which is ridiculous! This is Because he has been on it for 10 years. And I feel so bad for all of you that take your medication the way you are supposed to, just as my hubby does. These doctors, pharmacists, and makers absolutely have NO CLUE what they are talking about when it comes to these medications. and should listen to not only their patients but I think those who have had an addiction to it before to learn more. Think about it, a person that was addicted to heroin and is in a methadone clinic {not talking from experience either, I have friends} they can tell you more about something than any doctor, pharmacist, or maker of a drug! And from what my hubby looks like after taking that generic Watson brand before that's exactly what he looked like for 2 months, someone that was going through heroin withdrawl. They finally put him on the methadone for the sickness, because let's face it; methadone really doesn't take away the pain. I know this cause he keeps me awake at night after the five screwed up back surgeries worker's comp put him through. I wish you all the best Denise.
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Old 09-07-2010, 02:54 AM #27
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Originally Posted by LordWood View Post
My response you quoted what not only to you and if your on a medication if dropped its for one of 3 reasons either its effectiveness wears off/ no need for it, your allergic, or your doctor feels your gaining to much of a dependence or adverse effects from it. Dilaudid is another potent drug from the opiate class. 4mg of Dilaudid is equal to that of 20-30mg of Oxycontin so one can quickly see with higher dosage you exceed Oxycontins strength. Dilaudid as well has a longer effect over the day then Oxycontin. A lot of RSD patients find relief with use of this drug. Methadone is another and is extremely potent it may take longer to effect but is worth it completely. Think of it as a chart at the top you have methadone and then under you have Dilaudid in higher doses as well as higher end Fentanyl (patches and pump) then Oxycontin 80mg. I have been in this field for over 7 years now and have been to quite a collection of specialists as well as through the med line. In regard to the point of whose fault it is while its reckless and childish of the abusers its the FDA that needs to be responsible, just because people abuse items does not mean they(the addicts) should be the ones we base our choices on. As the FDAs responsibility is to take care of us not the addicts. The problem is while physical therapy and no medications does work well in some cases and those others that can get away with blocks, they are a world of difference from those of us with internal and internal full body. Once your RSD reaches the point of control over your body even to the point of causing respiratory failure there is no question that meds are a must its just the hard job of trying to find a level that works enough. Ketamine is a complete joke as most of us know. If you can work with nothing I'm extremely happy for you gabbycakes seems your a fortunate remission, but unfortunately not all of us have that ability.
Lordwood,

First when you say you have been at this for 7 years also, I believe you stated in a previous post you are around 19 or 20, so you where 13 and collecting data from doctors? I do not have any reactions from meds. I take and get whatever I need so don't mistake what I say or put words in my mouth. And I am not in remission I suffer everyday just like you and all of us who have this disorder. I have had decided to try other modalities to change the way we all have to live with RSD, drugs are not the answer all the time, but I do take them when I need them and sometimes everyday. I hope I cleared up your misunderstanding.

Also, there are quite of few people who agreed with me so I really don't know what to tell you...
Gabbycakes
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Old 09-07-2010, 02:58 AM #28
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Lordwood,

First when you say you have been at this for 7 years also, I believe you stated in a previous post you are around 19 or 20, so you where 13 and collecting data from doctors? I do not have any reactions from meds. I take and get whatever I need so don't mistake what I say or put words in my mouth. And I am not in remission I suffer everyday just like you and all of us who have this disorder. I have had decided to try other modalities to change the way we all have to live with RSD, drugs are not the answer all the time, but I do take them when I need them and sometimes everyday. I hope I cleared up your misunderstanding.

Also, there are quite of few people who agreed with me so I really don't know what to tell you...
Gabbycakes
Also, it is dangerous to quote comparables in dosage of extremely dangerous medication unless you are a doctor or pharmacologist. If mis-used based on your post things really could go very wrong. Please be carefull.
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Old 09-07-2010, 08:35 AM #29
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Default pain relief from meds

I think what is most important is that we get the relief we are needing and looking for as best as possible from what ever the medication that the Dr. prescribes for us. If they change a drug that no longer works as well then we need to work with our Dr. to find a new drug that will work and replace the old one.

Sure its a p.i.t.a. but we have to change along with the way they are making the new pain meds so they are safer for everyone or so they say. I don't like it any more then anyone else here but we have no other chose but to deal with it . We are to small as a whole group to fight this against the big giant drug co. They have more money than the government has right now. Insurance Co. are next with the big money to control what happens with how drugs are made.

Blame the new administration with their health reform this is why mine and everyone else's premium's took a big jump. I now pay more for less coverage.

Both the drug and insurance companies control what goes on with our drugs not the government. And over the next 3 years it is going to get even worst. So sit back because we are in for a long bumpy ride until the next election for the white house. This is when we need someone that is going to fix this mess that we are now in and needs to stop this from continuing. While watching national new on the 3 stations what adds do you see every time. All drug adds for you name it. Just 2 years ago on these same time slots where auto adds. Also you now see more and more insurance adds as well. These are the people with all the money. So as long as the government tries to push the drug makers they will fight back by take away from us the little people by making our drugs weaker so we have to buy more and then blame it on the FDA. It is sad but true. This is my 2 cents.
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Old 09-07-2010, 05:14 PM #30
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I've been dealing with specialists since I was 1.5 years old as I started with Ulcerative Colitis and then it went to crohns. I've had more health issues then most people have in there entire life. I've dealt with RSD specialists since 13 so don't mistake what I say or put words in my mouth. What other "modalities" physical therapy? HBOT? Nerve blocks? Or perhaps there new method of freezing and killing the nerves they choose to do it to? I will not even list ketamine as its a joke and a lot agree with that and I'm not just talking little infusions I'm talking also about those that get the full schwartzman routine. My apologies as from most of your posts you act like your in remission. In regards to your additional post I have 2 pharmacists that are family friends as well as doctors. I was thrown into this insane world of RSD just like many others who started younger and yes we actually do know quite a bit as we've had our lives stripped away and quite a number of years dealing with it. Just because your older does not mean you know more. Hopefully you can understand that others do actually know what were talking about.



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Originally Posted by gabbycakes View Post
Lordwood,

First when you say you have been at this for 7 years also, I believe you stated in a previous post you are around 19 or 20, so you where 13 and collecting data from doctors? I do not have any reactions from meds. I take and get whatever I need so don't mistake what I say or put words in my mouth. And I am not in remission I suffer everyday just like you and all of us who have this disorder. I have had decided to try other modalities to change the way we all have to live with RSD, drugs are not the answer all the time, but I do take them when I need them and sometimes everyday. I hope I cleared up your misunderstanding.

Also, there are quite of few people who agreed with me so I really don't know what to tell you...
Gabbycakes
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