IS RSD FATAL?

[Guest guest]

HI, this is Lori. From what I know and I do a lot of research. the actual disease of RSD is not fatal. But there things we do that can jeopordize our safety that involves RSD. Medication is one. Never hesitate to report immediately to your doctor, unusuial symptoms from medication. I try to inform a many people as I can about what to do about your medications. When you get a prescription from your doctor, before you fill it, make a copy of all of them. Just about every drug store has a copying machine, so take the few seconds to make a copy of each prescription. Make sure you understand what the prescription says and is for. Sometimes doctors are so messy we cannot read the prescriptions or they use abbreviations we do not understand. After you make copies and u go to the pharmacy window, ask for the Pharmacist, have a paper and pencil ready. Have him tell you what the meds are, how many u are to take, what are they for, ask about symbols like TID or BID. Ask these questions BEFORE you get the prescription filled. Write down what the pharmacists says. then when you go to the window to pick it up, make sure that the label says what you wrote down from the pharmacist before you got it filled. 24% of pharmacists make fatal mistakes. This is your life, dont take it casually where your meds are concerned. Also when you pick up the med have a list of all the ones yu take as well as the ones he is giving you and ask him if any of the meds clash, if ther are any that you should not take with another one. All of this carefullness only takes about fifteen minutes a month. You could be saving your life!!! It is well worth the time.

I have had quite a few rsd friends past away and I can tell you the last four out of five was over medications. Please protect yourself. Also when yu get your meds and you go home, have a notebook to write all the information you just gathered. I cant not say PLEASE PLEASE PLEASE PLEASE start making this your practice.

1. Always report symptoms

2. Always copy meds, have pharmacist explain the meds before they fill them and write down what he says they are. When youpick them up match the dosages and milligrams against the list you have in your hand from when he explained each med that you had written down.

3.Never take a different dosage than what the med container says. If it is not giving you relief, call your doctor. Never mix any "Other" meds that your physician or pharmacist know that you are taking.

Like I said,there are ways rsd can be fatal, not just having rsd, but the things all around the disease. Makes me so upset that docs and pharmacists dont tell you these things. So many of us naievely just do what they say. Remembe, 24% make lethat mistakes.

The Sympathetic Nerve travels throughout the entire body. RSD can be anywhere on and in the body. It is External and Internal. Espcially when it gets Internal, you have to have regular testing to make sure organs are not being affected. I haver rsd in my esophagus and stomach and had a big major surgery from some really serious symptoms are caused by rsd. So, no RSD alone doesnt cause death, but medication and internal rsd can cause serious problems. If you are on narcotics, Class 2 drugs, you must get a blood test every 3 months to see if there is any liver or kidney damage. If a physician puts you on this class of narcotic, like oxycontin, andothers, and does not tell you or give you the tests that are mandatory to do every 3 months, you either better tell him to start taking the tests or get to another physician as soon as you can. We should never sit back and let anyone, doc or not doc, pharmacist or no pharmacist, and let them have complete control as to what they are doing to your body. It is your RIGHT to know everything, ask as many questions as u can, and if they dont like it?? Quit them!! This is your life we are talking about. Please make it your business or we might be losing more rsders than we need to. sorry if I am coming on strong but i just cant sit back and watch rsders die because of lack of knowledge especially about medications. Anyone have any comments or questions, please just ask, Hope to see u all at the retreat!

Christmas in July RSD Retreat

July 26th & 27th 2003

www.rsdretreat.com

Love, Lori

Christmas in July RSD Retreat

July 26th & 27th 2003

www.rsdretreat.com

Love, Lori

[Guest guest]

LORI, ALL THE PRESCRIPTIONS THAT ARE GIVEN TO ME FRM MY PAIN DOC ARE

ALWAYS COPIED B4 I GET THEM & I BELONG TO MEDIC ALERT WHICH ALL MY MEDS

ARE ON THERE & MG & HOW OFTEN I TAKE THEM. WHEN I GET THEM HOME & NOT ON

SO MANY OF MY MEDS I FIX A 3 WK SUPPLY SO THERE WON'T BE ANY MISTAKES

WITH WHAT I'M TAKING. I DO HAVE THE TEST OFTEN TO CHEK MY ORGANS AND I

HAVE TAKEN SERIOUS PERCAUTIONS TO KEEP FROM TAKING TO MANY PILLS OR THE

WRONG ONES. I HAVE 7 DOC'S & EACH ONE KNOWS WHAT THE OTHER DOC'S HAVE

GIVEN ME. THIS IS THE FIRST EMAIL I'VE READ SINCE YESTERDAY ABT CYNDI &

I DON'T KNOW IF THIS HAS ANYTHING TO DO WITH WHAT HAPPENED TO HER YOU'VE

DONE THE RIGHT THING TO SPREAD THE WORD. THANKS SO MUCH BEV

[Guest guest]

LORI, ALL THE PRESCRIPTIONS THAT ARE GIVEN TO ME FRM MY PAIN DOC ARE

ALWAYS COPIED B4 I GET THEM & I BELONG TO MEDIC ALERT WHICH ALL MY MEDS

ARE ON THERE & MG & HOW OFTEN I TAKE THEM. WHEN I GET THEM HOME & NOT ON

SO MANY OF MY MEDS I FIX A 3 WK SUPPLY SO THERE WON'T BE ANY MISTAKES

WITH WHAT I'M TAKING. I DO HAVE THE TEST OFTEN TO CHEK MY ORGANS AND I

HAVE TAKEN SERIOUS PERCAUTIONS TO KEEP FROM TAKING TO MANY PILLS OR THE

WRONG ONES. I HAVE 7 DOC'S & EACH ONE KNOWS WHAT THE OTHER DOC'S HAVE

GIVEN ME. THIS IS THE FIRST EMAIL I'VE READ SINCE YESTERDAY ABT CYNDI &

I DON'T KNOW IF THIS HAS ANYTHING TO DO WITH WHAT HAPPENED TO HER YOU'VE

DONE THE RIGHT THING TO SPREAD THE WORD. THANKS SO MUCH BEV

[Guest guest]

LORI, I'M STILL IN A FOG FROM YESTERDAY, BUT AGAIN KAREN WHO HAS A

WEALTH OF KNOWLEDGE ABT MEDS & HERBAL'S THAT WAS SOMETHING I FORGOT.

THANKS KAREN

[Guest guest]

LORI, I'M STILL IN A FOG FROM YESTERDAY, BUT AGAIN KAREN WHO HAS A

WEALTH OF KNOWLEDGE ABT MEDS & HERBAL'S THAT WAS SOMETHING I FORGOT.

THANKS KAREN

[Guest guest]

Hi Lori,

I think what you wrote here was a truly great informative packet of information for RSD patients. And something that no one that I have seen has been willing to come forth and really speak up on to date. I also have been doing much research on RSD, not in the meds direction particularly, but they become involved, but in other ways. I have been asked to speak at nursing SCHOOLS on RSD because they are not even being TAUGHT what RSD IS today! But unfortunately my own RSD has taken its own nose dive, and I am limited to my bed and home lately. So I am on a mission to reach as many people as I can to WARN, EDUCATE, and to SELF TEACH all RSD'ers NOT to listen to all Dr's . RSD is so new to the medical world and is picking up speed as the new "FAD" disease of the 21stCentury. So Drs are jumping on the bandwagon all over the place. You see all kinds of anesthesiologists now going into PM. Do you know in Med school Drs are only taught a 20 minute course on Pain, and how to deal with patients with Chronic Pain. There are only TWO schools in our country that make a class on RSD/Chronic Pain a mandatory Class. all other schools it is an elective. But yet this has been around over 100 years. Imagine that!

But when you come out and say to RSD patients that RSD is not a fatal disease, that in itself can be such a fatal mistake in itself. It leads RSD patients on a false road with a false sense of security that all will be ok. RSD is a deadly disease in so many many ways. Right now I wish too God I could have the strength to write all I want to here, but am in a weakened state myself at the moment. RSD IN ITSELF is NOT Fatal. But everything that RSD will cause and the things that are associated with it will and can, and eventually DO lead to death. I have been trying to find the statistic of those who do not even make it to the end, because they end their own life due to RSD being the #1 pain in the world, and they no longer can bear it. Or those whose heart gives out because it goes into such a weakened state from the pain, which is where I sit now at 43 years old! But my RSD has taken my whole body and it has taken much more toll than just my heart. Thank you Drs & Meds! (That's what Lori is saying)

The NUMBER ONE KILLER within RSD and Please my RSD family listen to me. I beg of you. RSD is a NERVE DISEASE!!!! And Stress is your number one killer in RSD. Every time you go into a stressful situation, it can make it spread. I truly believe every time you get a block and the stress that is put on the nerves in your body makes it spread. Look around you at your fellow RSD'ers and do some calculations of your own. Ask them how many blocks they have had, and where they were before and what has happened through out. Do the math yourself. For every one of your nerves that are misfiring, it will lead to another, and then another, etc etc. This is how it will spread in your body. It is so simple, and the Drs make it so complicated. The culprit is stress and nerves!!!!!!! And if you DO NOT get a handle on it in the early stages and how to combat that, then it will go after your organs, and anything it can. Do you know that in Stage 4 of RSD you can developed so many Diseases including Cancer, this is because you will have no immune system left.

So please, yes your meds and what Lori said is so very very vital, and thank you Lori for all that wonderful information for I never took the time to research the med side. But go research your disease yourself. As I did. Only I did it too late. I was in denial. And I said it will not kill me. It will just be something I have to live with. WRONG!!!!!!!!!! I will end up a statistic! Then I learned too late what all those blocks did to my body. I have watched people who had normal RSD pain, go thru multiple blocks and are now bedridden due to them. I have watched people go for blocks and get their Lungs punctured, and are now invalids, close to death. This is not a small disease. And these Drs and their Blocks are not no small game. We are guinea Pigs in a field that they know nothing about! GO research yourself, and MAKE SURE you have a Doctor that KNOWS RSD!

My private email is rsdlighthouses @hotmail.com, or the t42golf@... if anyone would like to write to me. I usually do not post too often as I have been severely ill since January. I read them and I try to keep up. I so much wanted to be a large part of the group but went downhill almost right after I joined. I do apologize for that.

I also apologize for being so strong in my words, but I do not know how else to get them across to you in the short span of time in which I know I have left to do the work I now know I have to do. God Bless you all and be with you. My prayers are with you all daily.

Love MariBeth

IS RSD FATAL?

HI, this is Lori. From what I know and I do a lot of research. the actual disease of RSD is not fatal. But there things we do that can jeopordize our safety that involves RSD. Medication is one. Never hesitate to report immediately to your doctor, unusuial symptoms from medication. I try to inform a many people as I can about what to do about your medications. When you get a prescription from your doctor, before you fill it, make a copy of all of them. Just about every drug store has a copying machine, so take the few seconds to make a copy of each prescription. Make sure you understand what the prescription says and is for. Sometimes doctors are so messy we cannot read the prescriptions or they use abbreviations we do not understand. After you make copies and u go to the pharmacy window, ask for the Pharmacist, have a paper and pencil ready. Have him tell you what the meds are, how many u are to take, what are they for, ask about symbols like TID or BID. Ask these questions BEFORE you get the prescription filled. Write down what the pharmacists says. then when you go to the window to pick it up, make sure that the label says what you wrote down from the pharmacist before you got it filled. 24% of pharmacists make fatal mistakes. This is your life, dont take it casually where your meds are concerned. Also when you pick up the med have a list of all the ones yu take as well as the ones he is giving you and ask him if any of the meds clash, if ther are any that you should not take with another one. All of this carefullness only takes about fifteen minutes a month. You could be saving your life!!! It is well worth the time.I have had quite a few rsd friends past away and I can tell you the last four out of five was over medications. Please protect yourself. Also when yu get your meds and you go home, have a notebook to write all the information you just gathered. I cant not say PLEASE PLEASE PLEASE PLEASE start making this your practice.1. Always report symptoms2. Always copy meds, have pharmacist explain the meds before they fill them and write down what he says they are. When youpick them up match the dosages and milligrams against the list you have in your hand from when he explained each med that you had written down.3.Never take a different dosage than what the med container says. If it is not giving you relief, call your doctor. Never mix any "Other" meds that your physician or pharmacist know that you are taking.Like I said,there are ways rsd can be fatal, not just having rsd, but the things all around the disease. Makes me so upset that docs and pharmacists dont tell you these things. So many of us naievely just do what they say. Remembe, 24% make lethat mistakes.The Sympathetic Nerve travels throughout the entire body. RSD can be anywhere on and in the body. It is External and Internal. Espcially when it gets Internal, you have to have regular testing to make sure organs are not being affected. I haver rsd in my esophagus and stomach and had a big major surgery from some really serious symptoms are caused by rsd. So, no RSD alone doesnt cause death, but medication and internal rsd can cause serious problems. If you are on narcotics, Class 2 drugs, you must get a blood test every 3 months to see if there is any liver or kidney damage. If a physician puts you on this class of narcotic, like oxycontin, andothers, and does not tell you or give you the tests that are mandatory to do every 3 months, you either better tell him to start taking the tests or get to another physician as soon as you can. We should never sit back and let anyone, doc or not doc, pharmacist or no pharmacist, and let them have complete control as to what they are doing to your body. It is your RIGHT to know everything, ask as many questions as u can, and if they dont like it?? Quit them!! This is your life we are talking about. Please make it your business or we might be losing more rsders than we need to. sorry if I am coming on strong but i just cant sit back and watch rsders die because of lack of knowledge especially about medications. Anyone have any comments or questions, please just ask, Hope to see u all at the retreat!Christmas in July RSD RetreatJuly 26th & 27th 2003www.rsdretreat.comLove, LoriChristmas in July RSD RetreatJuly 26th & 27th 2003www.rsdretreat.comLove, Lori

[Guest guest]

Hi Lori,

I think what you wrote here was a truly great informative packet of information for RSD patients. And something that no one that I have seen has been willing to come forth and really speak up on to date. I also have been doing much research on RSD, not in the meds direction particularly, but they become involved, but in other ways. I have been asked to speak at nursing SCHOOLS on RSD because they are not even being TAUGHT what RSD IS today! But unfortunately my own RSD has taken its own nose dive, and I am limited to my bed and home lately. So I am on a mission to reach as many people as I can to WARN, EDUCATE, and to SELF TEACH all RSD'ers NOT to listen to all Dr's . RSD is so new to the medical world and is picking up speed as the new "FAD" disease of the 21stCentury. So Drs are jumping on the bandwagon all over the place. You see all kinds of anesthesiologists now going into PM. Do you know in Med school Drs are only taught a 20 minute course on Pain, and how to deal with patients with Chronic Pain. There are only TWO schools in our country that make a class on RSD/Chronic Pain a mandatory Class. all other schools it is an elective. But yet this has been around over 100 years. Imagine that!

But when you come out and say to RSD patients that RSD is not a fatal disease, that in itself can be such a fatal mistake in itself. It leads RSD patients on a false road with a false sense of security that all will be ok. RSD is a deadly disease in so many many ways. Right now I wish too God I could have the strength to write all I want to here, but am in a weakened state myself at the moment. RSD IN ITSELF is NOT Fatal. But everything that RSD will cause and the things that are associated with it will and can, and eventually DO lead to death. I have been trying to find the statistic of those who do not even make it to the end, because they end their own life due to RSD being the #1 pain in the world, and they no longer can bear it. Or those whose heart gives out because it goes into such a weakened state from the pain, which is where I sit now at 43 years old! But my RSD has taken my whole body and it has taken much more toll than just my heart. Thank you Drs & Meds! (That's what Lori is saying)

The NUMBER ONE KILLER within RSD and Please my RSD family listen to me. I beg of you. RSD is a NERVE DISEASE!!!! And Stress is your number one killer in RSD. Every time you go into a stressful situation, it can make it spread. I truly believe every time you get a block and the stress that is put on the nerves in your body makes it spread. Look around you at your fellow RSD'ers and do some calculations of your own. Ask them how many blocks they have had, and where they were before and what has happened through out. Do the math yourself. For every one of your nerves that are misfiring, it will lead to another, and then another, etc etc. This is how it will spread in your body. It is so simple, and the Drs make it so complicated. The culprit is stress and nerves!!!!!!! And if you DO NOT get a handle on it in the early stages and how to combat that, then it will go after your organs, and anything it can. Do you know that in Stage 4 of RSD you can developed so many Diseases including Cancer, this is because you will have no immune system left.

So please, yes your meds and what Lori said is so very very vital, and thank you Lori for all that wonderful information for I never took the time to research the med side. But go research your disease yourself. As I did. Only I did it too late. I was in denial. And I said it will not kill me. It will just be something I have to live with. WRONG!!!!!!!!!! I will end up a statistic! Then I learned too late what all those blocks did to my body. I have watched people who had normal RSD pain, go thru multiple blocks and are now bedridden due to them. I have watched people go for blocks and get their Lungs punctured, and are now invalids, close to death. This is not a small disease. And these Drs and their Blocks are not no small game. We are guinea Pigs in a field that they know nothing about! GO research yourself, and MAKE SURE you have a Doctor that KNOWS RSD!

My private email is rsdlighthouses @hotmail.com, or the t42golf@... if anyone would like to write to me. I usually do not post too often as I have been severely ill since January. I read them and I try to keep up. I so much wanted to be a large part of the group but went downhill almost right after I joined. I do apologize for that.

I also apologize for being so strong in my words, but I do not know how else to get them across to you in the short span of time in which I know I have left to do the work I now know I have to do. God Bless you all and be with you. My prayers are with you all daily.

Love MariBeth

IS RSD FATAL?

HI, this is Lori. From what I know and I do a lot of research. the actual disease of RSD is not fatal. But there things we do that can jeopordize our safety that involves RSD. Medication is one. Never hesitate to report immediately to your doctor, unusuial symptoms from medication. I try to inform a many people as I can about what to do about your medications. When you get a prescription from your doctor, before you fill it, make a copy of all of them. Just about every drug store has a copying machine, so take the few seconds to make a copy of each prescription. Make sure you understand what the prescription says and is for. Sometimes doctors are so messy we cannot read the prescriptions or they use abbreviations we do not understand. After you make copies and u go to the pharmacy window, ask for the Pharmacist, have a paper and pencil ready. Have him tell you what the meds are, how many u are to take, what are they for, ask about symbols like TID or BID. Ask these questions BEFORE you get the prescription filled. Write down what the pharmacists says. then when you go to the window to pick it up, make sure that the label says what you wrote down from the pharmacist before you got it filled. 24% of pharmacists make fatal mistakes. This is your life, dont take it casually where your meds are concerned. Also when you pick up the med have a list of all the ones yu take as well as the ones he is giving you and ask him if any of the meds clash, if ther are any that you should not take with another one. All of this carefullness only takes about fifteen minutes a month. You could be saving your life!!! It is well worth the time.I have had quite a few rsd friends past away and I can tell you the last four out of five was over medications. Please protect yourself. Also when yu get your meds and you go home, have a notebook to write all the information you just gathered. I cant not say PLEASE PLEASE PLEASE PLEASE start making this your practice.1. Always report symptoms2. Always copy meds, have pharmacist explain the meds before they fill them and write down what he says they are. When youpick them up match the dosages and milligrams against the list you have in your hand from when he explained each med that you had written down.3.Never take a different dosage than what the med container says. If it is not giving you relief, call your doctor. Never mix any "Other" meds that your physician or pharmacist know that you are taking.Like I said,there are ways rsd can be fatal, not just having rsd, but the things all around the disease. Makes me so upset that docs and pharmacists dont tell you these things. So many of us naievely just do what they say. Remembe, 24% make lethat mistakes.The Sympathetic Nerve travels throughout the entire body. RSD can be anywhere on and in the body. It is External and Internal. Espcially when it gets Internal, you have to have regular testing to make sure organs are not being affected. I haver rsd in my esophagus and stomach and had a big major surgery from some really serious symptoms are caused by rsd. So, no RSD alone doesnt cause death, but medication and internal rsd can cause serious problems. If you are on narcotics, Class 2 drugs, you must get a blood test every 3 months to see if there is any liver or kidney damage. If a physician puts you on this class of narcotic, like oxycontin, andothers, and does not tell you or give you the tests that are mandatory to do every 3 months, you either better tell him to start taking the tests or get to another physician as soon as you can. We should never sit back and let anyone, doc or not doc, pharmacist or no pharmacist, and let them have complete control as to what they are doing to your body. It is your RIGHT to know everything, ask as many questions as u can, and if they dont like it?? Quit them!! This is your life we are talking about. Please make it your business or we might be losing more rsders than we need to. sorry if I am coming on strong but i just cant sit back and watch rsders die because of lack of knowledge especially about medications. Anyone have any comments or questions, please just ask, Hope to see u all at the retreat!Christmas in July RSD RetreatJuly 26th & 27th 2003www.rsdretreat.comLove, LoriChristmas in July RSD RetreatJuly 26th & 27th 2003www.rsdretreat.comLove, Lori

[Guest guest]

Hi Lori,

I think what you wrote here was a truly great informative packet of information for RSD patients. And something that no one that I have seen has been willing to come forth and really speak up on to date. I also have been doing much research on RSD, not in the meds direction particularly, but they become involved, but in other ways. I have been asked to speak at nursing SCHOOLS on RSD because they are not even being TAUGHT what RSD IS today! But unfortunately my own RSD has taken its own nose dive, and I am limited to my bed and home lately. So I am on a mission to reach as many people as I can to WARN, EDUCATE, and to SELF TEACH all RSD'ers NOT to listen to all Dr's . RSD is so new to the medical world and is picking up speed as the new "FAD" disease of the 21stCentury. So Drs are jumping on the bandwagon all over the place. You see all kinds of anesthesiologists now going into PM. Do you know in Med school Drs are only taught a 20 minute course on Pain, and how to deal with patients with Chronic Pain. There are only TWO schools in our country that make a class on RSD/Chronic Pain a mandatory Class. all other schools it is an elective. But yet this has been around over 100 years. Imagine that!

But when you come out and say to RSD patients that RSD is not a fatal disease, that in itself can be such a fatal mistake in itself. It leads RSD patients on a false road with a false sense of security that all will be ok. RSD is a deadly disease in so many many ways. Right now I wish too God I could have the strength to write all I want to here, but am in a weakened state myself at the moment. RSD IN ITSELF is NOT Fatal. But everything that RSD will cause and the things that are associated with it will and can, and eventually DO lead to death. I have been trying to find the statistic of those who do not even make it to the end, because they end their own life due to RSD being the #1 pain in the world, and they no longer can bear it. Or those whose heart gives out because it goes into such a weakened state from the pain, which is where I sit now at 43 years old! But my RSD has taken my whole body and it has taken much more toll than just my heart. Thank you Drs & Meds! (That's what Lori is saying)

The NUMBER ONE KILLER within RSD and Please my RSD family listen to me. I beg of you. RSD is a NERVE DISEASE!!!! And Stress is your number one killer in RSD. Every time you go into a stressful situation, it can make it spread. I truly believe every time you get a block and the stress that is put on the nerves in your body makes it spread. Look around you at your fellow RSD'ers and do some calculations of your own. Ask them how many blocks they have had, and where they were before and what has happened through out. Do the math yourself. For every one of your nerves that are misfiring, it will lead to another, and then another, etc etc. This is how it will spread in your body. It is so simple, and the Drs make it so complicated. The culprit is stress and nerves!!!!!!! And if you DO NOT get a handle on it in the early stages and how to combat that, then it will go after your organs, and anything it can. Do you know that in Stage 4 of RSD you can developed so many Diseases including Cancer, this is because you will have no immune system left.

So please, yes your meds and what Lori said is so very very vital, and thank you Lori for all that wonderful information for I never took the time to research the med side. But go research your disease yourself. As I did. Only I did it too late. I was in denial. And I said it will not kill me. It will just be something I have to live with. WRONG!!!!!!!!!! I will end up a statistic! Then I learned too late what all those blocks did to my body. I have watched people who had normal RSD pain, go thru multiple blocks and are now bedridden due to them. I have watched people go for blocks and get their Lungs punctured, and are now invalids, close to death. This is not a small disease. And these Drs and their Blocks are not no small game. We are guinea Pigs in a field that they know nothing about! GO research yourself, and MAKE SURE you have a Doctor that KNOWS RSD!

My private email is rsdlighthouses @hotmail.com, or the t42golf@... if anyone would like to write to me. I usually do not post too often as I have been severely ill since January. I read them and I try to keep up. I so much wanted to be a large part of the group but went downhill almost right after I joined. I do apologize for that.

I also apologize for being so strong in my words, but I do not know how else to get them across to you in the short span of time in which I know I have left to do the work I now know I have to do. God Bless you all and be with you. My prayers are with you all daily.

Love MariBeth

IS RSD FATAL?

HI, this is Lori. From what I know and I do a lot of research. the actual disease of RSD is not fatal. But there things we do that can jeopordize our safety that involves RSD. Medication is one. Never hesitate to report immediately to your doctor, unusuial symptoms from medication. I try to inform a many people as I can about what to do about your medications. When you get a prescription from your doctor, before you fill it, make a copy of all of them. Just about every drug store has a copying machine, so take the few seconds to make a copy of each prescription. Make sure you understand what the prescription says and is for. Sometimes doctors are so messy we cannot read the prescriptions or they use abbreviations we do not understand. After you make copies and u go to the pharmacy window, ask for the Pharmacist, have a paper and pencil ready. Have him tell you what the meds are, how many u are to take, what are they for, ask about symbols like TID or BID. Ask these questions BEFORE you get the prescription filled. Write down what the pharmacists says. then when you go to the window to pick it up, make sure that the label says what you wrote down from the pharmacist before you got it filled. 24% of pharmacists make fatal mistakes. This is your life, dont take it casually where your meds are concerned. Also when you pick up the med have a list of all the ones yu take as well as the ones he is giving you and ask him if any of the meds clash, if ther are any that you should not take with another one. All of this carefullness only takes about fifteen minutes a month. You could be saving your life!!! It is well worth the time.I have had quite a few rsd friends past away and I can tell you the last four out of five was over medications. Please protect yourself. Also when yu get your meds and you go home, have a notebook to write all the information you just gathered. I cant not say PLEASE PLEASE PLEASE PLEASE start making this your practice.1. Always report symptoms2. Always copy meds, have pharmacist explain the meds before they fill them and write down what he says they are. When youpick them up match the dosages and milligrams against the list you have in your hand from when he explained each med that you had written down.3.Never take a different dosage than what the med container says. If it is not giving you relief, call your doctor. Never mix any "Other" meds that your physician or pharmacist know that you are taking.Like I said,there are ways rsd can be fatal, not just having rsd, but the things all around the disease. Makes me so upset that docs and pharmacists dont tell you these things. So many of us naievely just do what they say. Remembe, 24% make lethat mistakes.The Sympathetic Nerve travels throughout the entire body. RSD can be anywhere on and in the body. It is External and Internal. Espcially when it gets Internal, you have to have regular testing to make sure organs are not being affected. I haver rsd in my esophagus and stomach and had a big major surgery from some really serious symptoms are caused by rsd. So, no RSD alone doesnt cause death, but medication and internal rsd can cause serious problems. If you are on narcotics, Class 2 drugs, you must get a blood test every 3 months to see if there is any liver or kidney damage. If a physician puts you on this class of narcotic, like oxycontin, andothers, and does not tell you or give you the tests that are mandatory to do every 3 months, you either better tell him to start taking the tests or get to another physician as soon as you can. We should never sit back and let anyone, doc or not doc, pharmacist or no pharmacist, and let them have complete control as to what they are doing to your body. It is your RIGHT to know everything, ask as many questions as u can, and if they dont like it?? Quit them!! This is your life we are talking about. Please make it your business or we might be losing more rsders than we need to. sorry if I am coming on strong but i just cant sit back and watch rsders die because of lack of knowledge especially about medications. Anyone have any comments or questions, please just ask, Hope to see u all at the retreat!Christmas in July RSD RetreatJuly 26th & 27th 2003www.rsdretreat.comLove, LoriChristmas in July RSD RetreatJuly 26th & 27th 2003www.rsdretreat.comLove, Lori

[Guest guest]

MARIBETH, I HAVE NEVER HEARD ANYONE PUT INTO WORDS THE WAY YOU JUST

HAVE, WHICH MEANS VERY EASY TO UNDERSTAND, I WOULD LIKE TO USE THIS WITH

SOME OF THE PEOPLE WHO HAVE TO PUT UP WITH ME & I'M TRYING TO GET A LOCAL

HOSP. MAGAZINE TO DO AN ARTICLE ON RSD WOULD THIS BE ALRIGHT WITH YOU. I

HAVE HAD SINCE 1999 OVER 50 BLOCKS & HAVE HAD A HEART ATTACK AT AGE 48.

I'VE HAD RSD SINCE 1997 BUT WASN'T DIAGNOSED UNTIL 99. MY PRAYERS ARE

WITH YOU & YOU SOUND LIKE A VERY DETERMINED LADY & THAT IS A WONDERFUL

QUALITY TO HAVE. BEV FRM GA

[Guest guest]

Dear Bev

You are most welcome to use whatever will help in the cause of RSD and furthering the knowledge to the world out there. I have a strong cause, and very little time left to pursue this cause, but my heart and my love is for every RSD diagnosed person out there being told the lies that after years of now seeing the results they have now inflicted on us, they are now dying from all the meds and the multiple blocks that spread the RSD to the dangerous levels. THEN they say, "Go somewhere else, I can no longer help, you" . I have much research data on Level 4 RSD Patients DYING from the aforesaid reasons, and their only hope now is the comfort of the meds, and most Doctors too afraid to touch them, I could go on and on and on. But I will shut up. Contact me anytime. If you would like me to write any more I would be more than willing.

God Bless you

MariBeth

Re: IS RSD FATAL?

MARIBETH, I HAVE NEVER HEARD ANYONE PUT INTO WORDS THE WAY YOU JUSTHAVE, WHICH MEANS VERY EASY TO UNDERSTAND, I WOULD LIKE TO USE THIS WITHSOME OF THE PEOPLE WHO HAVE TO PUT UP WITH ME & I'M TRYING TO GET A LOCALHOSP. MAGAZINE TO DO AN ARTICLE ON RSD WOULD THIS BE ALRIGHT WITH YOU. IHAVE HAD SINCE 1999 OVER 50 BLOCKS & HAVE HAD A HEART ATTACK AT AGE 48. I'VE HAD RSD SINCE 1997 BUT WASN'T DIAGNOSED UNTIL 99. MY PRAYERS AREWITH YOU & YOU SOUND LIKE A VERY DETERMINED LADY & THAT IS A WONDERFULQUALITY TO HAVE. BEV FRM GA

[Guest guest]

MARIBETH, SINCE YOUR SUCH A WEALTH OF KNOWLEDGE ESPECIALLY ON THE 4TH

STAGE DO YOU HAVE COPIES OF ALL OF IT OR IS IT IN THE COMPUTER? IF YOU

HAVE COPIES THAT YOU COULD SEND TO MY HOME ADDY PLEASE EMAIL ME

PERSONALLY IF YOU FEEL LIKE IT AND I WOULD GLADLY SEND YOU THE MONEY IT

WOULD TAKE TO MAIL THEM TO ME. I HAVE ALSO WRITTEN WOMEN'S DAY MAGAZINE

PLEADING THEM TO DO AN ARTICLE ON RSD & GAVE THEM SOME WEBSITE'S TO GO

TO, BUT THE MORE INFO I HAVE PERSONALLY WILL GO ALOT FURTHER & MAYBE

DEEPER INTO THE ARTICLE'S. I FEEL LIKE YOU DO AND I THINK OTHER'S FEEL

THE SAME WAY WE'RE ON A MISSION TO BE HEARD AND WHATEVER I HAVE TO DO TO

GET THERE I WILL IF I CAN. MY PRAYERS ARE WITH YOU. TAKE CARE BEV