Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn, he's scared because he doesn't know how to help you. So, instead of sticking with you and trying to help, he just says " you're over it. " My doc is doing the exact same thing. He doesn't know how to help me, so last week he told me that I used to have RSD, but now I'm " cured " and that any symptoms I'm having now, including pain, are all psychological because I haven't responded to the diagnosis well. That's why I'm doing research to find actual medical articles that state it's not curable. I hate to hear you're going through this. It's horrible when doctors quit caring. I don't know what to tell you to help you. I'm sorry. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 lyn,,, mine has spread from my shoulders to back face scalp neck and left leg right leg and now my left hip it scares me but if you look it up it does spread ..rsd.org or rsd hope they have it there i have a lot more sites let me know from doctors also about it spreading soft hugs to you less pain pamlynlorraine wrote: Ginny,That's what I mean about being stunned into silence. I know that I've read it, seen it, felt it, yet when my own doctor looked me in the eye with his "smile of assurance" and said that it completely short circuited my thinking processes and I went blank. No arguments, nothing would come out of my mouth. I was....stunned.Do you have any specific quotes from authorities (that discuss spreading from lower body to upper) that I might use? I can't help but think that he called up one of his old croonies because he just didn't know what to do and he got one of the "bad guys". I wonder if I should waste my time on him. I think I might be fighting an impossible battle with him if he is so sure of himself. If I knew of another doctor I'd change today. Thank you and hope you are managing with a low level pain today. You posted about meditating and biofeedback. I had that training and use it. It can make a huge difference in calming down the body. It does take practice and dedication on a daily basis, I think. Thank you. It is good to hear from you.With love, LynGinny Barrientos <hisloss123@y...> wrote:> Lyn,> > > I am so sorry that your dr would all of a sudden do that to you. It's stressful enough to have, live and breathe this disorder without drs doing that. I hope on his vacation he has a change of heart or reads up on RSD more..It can spread and has with mine...I have it in my neck and right arm to full upper body and now in my left leg too. Over 8 months it has went to stage 1 to stage 2 also. I can't believe a dr would say RSD doesn't spread...it's in the neurology society of america and the neurology med journals that it does spread and can spread slowly or rapidly depending on the person. I hope everything works out for you and drs...Hugs..Ginny> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 lyn,,, mine has spread from my shoulders to back face scalp neck and left leg right leg and now my left hip it scares me but if you look it up it does spread ..rsd.org or rsd hope they have it there i have a lot more sites let me know from doctors also about it spreading soft hugs to you less pain pamlynlorraine wrote: Ginny,That's what I mean about being stunned into silence. I know that I've read it, seen it, felt it, yet when my own doctor looked me in the eye with his "smile of assurance" and said that it completely short circuited my thinking processes and I went blank. No arguments, nothing would come out of my mouth. I was....stunned.Do you have any specific quotes from authorities (that discuss spreading from lower body to upper) that I might use? I can't help but think that he called up one of his old croonies because he just didn't know what to do and he got one of the "bad guys". I wonder if I should waste my time on him. I think I might be fighting an impossible battle with him if he is so sure of himself. If I knew of another doctor I'd change today. Thank you and hope you are managing with a low level pain today. You posted about meditating and biofeedback. I had that training and use it. It can make a huge difference in calming down the body. It does take practice and dedication on a daily basis, I think. Thank you. It is good to hear from you.With love, LynGinny Barrientos <hisloss123@y...> wrote:> Lyn,> > > I am so sorry that your dr would all of a sudden do that to you. It's stressful enough to have, live and breathe this disorder without drs doing that. I hope on his vacation he has a change of heart or reads up on RSD more..It can spread and has with mine...I have it in my neck and right arm to full upper body and now in my left leg too. Over 8 months it has went to stage 1 to stage 2 also. I can't believe a dr would say RSD doesn't spread...it's in the neurology society of america and the neurology med journals that it does spread and can spread slowly or rapidly depending on the person. I hope everything works out for you and drs...Hugs..Ginny> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 lyn,,, mine has spread from my shoulders to back face scalp neck and left leg right leg and now my left hip it scares me but if you look it up it does spread ..rsd.org or rsd hope they have it there i have a lot more sites let me know from doctors also about it spreading soft hugs to you less pain pamlynlorraine wrote: Ginny,That's what I mean about being stunned into silence. I know that I've read it, seen it, felt it, yet when my own doctor looked me in the eye with his "smile of assurance" and said that it completely short circuited my thinking processes and I went blank. No arguments, nothing would come out of my mouth. I was....stunned.Do you have any specific quotes from authorities (that discuss spreading from lower body to upper) that I might use? I can't help but think that he called up one of his old croonies because he just didn't know what to do and he got one of the "bad guys". I wonder if I should waste my time on him. I think I might be fighting an impossible battle with him if he is so sure of himself. If I knew of another doctor I'd change today. Thank you and hope you are managing with a low level pain today. You posted about meditating and biofeedback. I had that training and use it. It can make a huge difference in calming down the body. It does take practice and dedication on a daily basis, I think. Thank you. It is good to hear from you.With love, LynGinny Barrientos <hisloss123@y...> wrote:> Lyn,> > > I am so sorry that your dr would all of a sudden do that to you. It's stressful enough to have, live and breathe this disorder without drs doing that. I hope on his vacation he has a change of heart or reads up on RSD more..It can spread and has with mine...I have it in my neck and right arm to full upper body and now in my left leg too. Over 8 months it has went to stage 1 to stage 2 also. I can't believe a dr would say RSD doesn't spread...it's in the neurology society of america and the neurology med journals that it does spread and can spread slowly or rapidly depending on the person. I hope everything works out for you and drs...Hugs..Ginny> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn - It must be so awful for you to try and comprehend this turn that your doc has taken on you. Unfortunately, you are probably right in thinking that he had a conversation with one of the "bad ones" who only think they know it all. I love these doctors who claim RSD doesn't spread.....mine started as CRPS type II in my right leg; now I have generalized type I in my left leg, both arm and my back as well. I suppose they could say that pain is all in my head, but it wouldn't explain the swelling, the coldness or the discoloration would it? Wonder what brilliant excuse the nay-sayers would come up with for that. I'm pretty sure that you can print out info about how RSD/CRPS can spread from the www.rsds.org website. It's one of those false myths that they're trying (unsucessfully obviously) to counterract. Hang in there and I hope that you'll be able to work all of this out. Tricialynlorraine wrote: Hello everyone,I've been away from the message board and don't know how youall are doing. So I risk posting without reading the current messages. I truly hope I am not inserting during a time of crisis. Now that I've written that I am thinking every day is a crisis withRSD………… I think of you everyday and send my best wishes, prayers, and thoughts to each and everyone of you. I thought I might be able to catch up with answering the messages but that now seems like an overwhelming task. I hope you who wrote to me will understand and know that I am very grateful for your time and energy. It all helps so much.I also want to thank you for giving me whatever information you had in my search for Vic and Sharon concerning an extremely interesting research paper,my symptoms of numbness and needles in all four extremities, and all the questions about what we have in common that has brought us to RSD,and the many light hearted laughs shared here. Every day I look at all of you on my Pin Pal Map, it makes me feel less alone in this.Right now I am searching for a new doctor…seems mine picked upsome information in the last week or two and has decided that I am"over it". Those are his words. That visit stunned me into silencefor several days. He explained away the pain as being side effects of Prednisone, said "RSD doesn't spread" and "take these (Paxil)" and see him in two weeks. No kidding! He told me to put away my notes charting the symptoms, he didn't even want to hear about any ofit. This doctor was my ally for years. Who or what did he hear or read to make him do this 180 on me? He went from the previous week's visit of saying he just didn't know what to do for me to takingthis new position that I am "over it". He has gone on vacationthis week so when my wits finally returned he is not available to ask that very question. I am sure this story isn't over, yet.My best to you all. Hopes for a pain free day. With Love, Lyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn - It must be so awful for you to try and comprehend this turn that your doc has taken on you. Unfortunately, you are probably right in thinking that he had a conversation with one of the "bad ones" who only think they know it all. I love these doctors who claim RSD doesn't spread.....mine started as CRPS type II in my right leg; now I have generalized type I in my left leg, both arm and my back as well. I suppose they could say that pain is all in my head, but it wouldn't explain the swelling, the coldness or the discoloration would it? Wonder what brilliant excuse the nay-sayers would come up with for that. I'm pretty sure that you can print out info about how RSD/CRPS can spread from the www.rsds.org website. It's one of those false myths that they're trying (unsucessfully obviously) to counterract. Hang in there and I hope that you'll be able to work all of this out. Tricialynlorraine wrote: Hello everyone,I've been away from the message board and don't know how youall are doing. So I risk posting without reading the current messages. I truly hope I am not inserting during a time of crisis. Now that I've written that I am thinking every day is a crisis withRSD………… I think of you everyday and send my best wishes, prayers, and thoughts to each and everyone of you. I thought I might be able to catch up with answering the messages but that now seems like an overwhelming task. I hope you who wrote to me will understand and know that I am very grateful for your time and energy. It all helps so much.I also want to thank you for giving me whatever information you had in my search for Vic and Sharon concerning an extremely interesting research paper,my symptoms of numbness and needles in all four extremities, and all the questions about what we have in common that has brought us to RSD,and the many light hearted laughs shared here. Every day I look at all of you on my Pin Pal Map, it makes me feel less alone in this.Right now I am searching for a new doctor…seems mine picked upsome information in the last week or two and has decided that I am"over it". Those are his words. That visit stunned me into silencefor several days. He explained away the pain as being side effects of Prednisone, said "RSD doesn't spread" and "take these (Paxil)" and see him in two weeks. No kidding! He told me to put away my notes charting the symptoms, he didn't even want to hear about any ofit. This doctor was my ally for years. Who or what did he hear or read to make him do this 180 on me? He went from the previous week's visit of saying he just didn't know what to do for me to takingthis new position that I am "over it". He has gone on vacationthis week so when my wits finally returned he is not available to ask that very question. I am sure this story isn't over, yet.My best to you all. Hopes for a pain free day. With Love, Lyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn - It must be so awful for you to try and comprehend this turn that your doc has taken on you. Unfortunately, you are probably right in thinking that he had a conversation with one of the "bad ones" who only think they know it all. I love these doctors who claim RSD doesn't spread.....mine started as CRPS type II in my right leg; now I have generalized type I in my left leg, both arm and my back as well. I suppose they could say that pain is all in my head, but it wouldn't explain the swelling, the coldness or the discoloration would it? Wonder what brilliant excuse the nay-sayers would come up with for that. I'm pretty sure that you can print out info about how RSD/CRPS can spread from the www.rsds.org website. It's one of those false myths that they're trying (unsucessfully obviously) to counterract. Hang in there and I hope that you'll be able to work all of this out. Tricialynlorraine wrote: Hello everyone,I've been away from the message board and don't know how youall are doing. So I risk posting without reading the current messages. I truly hope I am not inserting during a time of crisis. Now that I've written that I am thinking every day is a crisis withRSD………… I think of you everyday and send my best wishes, prayers, and thoughts to each and everyone of you. I thought I might be able to catch up with answering the messages but that now seems like an overwhelming task. I hope you who wrote to me will understand and know that I am very grateful for your time and energy. It all helps so much.I also want to thank you for giving me whatever information you had in my search for Vic and Sharon concerning an extremely interesting research paper,my symptoms of numbness and needles in all four extremities, and all the questions about what we have in common that has brought us to RSD,and the many light hearted laughs shared here. Every day I look at all of you on my Pin Pal Map, it makes me feel less alone in this.Right now I am searching for a new doctor…seems mine picked upsome information in the last week or two and has decided that I am"over it". Those are his words. That visit stunned me into silencefor several days. He explained away the pain as being side effects of Prednisone, said "RSD doesn't spread" and "take these (Paxil)" and see him in two weeks. No kidding! He told me to put away my notes charting the symptoms, he didn't even want to hear about any ofit. This doctor was my ally for years. Who or what did he hear or read to make him do this 180 on me? He went from the previous week's visit of saying he just didn't know what to do for me to takingthis new position that I am "over it". He has gone on vacationthis week so when my wits finally returned he is not available to ask that very question. I am sure this story isn't over, yet.My best to you all. Hopes for a pain free day. With Love, Lyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Hi my name is christina. I am 23 years old and i have had rsd 4 about 3 years. I would like to talk to someone about life in hell. I have been married 4 3 years and we would ilke to have kids and a real life. Can anyone tell me how we go about doing this. My God Bless us all chrissyTricia Skiba wrote: Lyn - It must be so awful for you to try and comprehend this turn that your doc has taken on you. Unfortunately, you are probably right in thinking that he had a conversation with one of the "bad ones" who only think they know it all. I love these doctors who claim RSD doesn't spread.....mine started as CRPS type II in my right leg; now I have generalized type I in my left leg, both arm and my back as well. I suppose they could say that pain is all in my head, but it wouldn't explain the swelling, the coldness or the discoloration would it? Wonder what brilliant excuse the nay-sayers would come up with for that. I'm pretty sure that you can print out info about how RSD/CRPS can spread from the www.rsds.org website. It's one of those false myths that they're trying (unsucessfully obviously) to counterract. Hang in there and I hope that you'll be able to work all of this out. Tricialynlorraine wrote: Hello everyone,I've been away from the message board and don't know how youall are doing. So I risk posting without reading the current messages. I truly hope I am not inserting during a time of crisis. Now that I've written that I am thinking every day is a crisis withRSD………… I think of you everyday and send my best wishes, prayers, and thoughts to each and everyone of you. I thought I might be able to catch up with answering the messages but that now seems like an overwhelming task. I hope you who wrote to me will understand and know that I am very grateful for your time and energy. It all helps so much.I also want to thank you for giving me whatever information you had in my search for Vic and Sharon concerning an extremely interesting research paper,my symptoms of numbness and needles in all four extremities, and all the questions about what we have in common that has brought us to RSD,and the many light hearted laughs shared here. Every day I look at all of you on my Pin Pal Map, it makes me feel less alone in this.Right now I am searching for a new doctor…seems mine picked upsome information in the last week or two and has decided that I am"over it". Those are his words. That visit stunned me into silencefor several days. He explained away the pain as being side effects of Prednisone, said "RSD doesn't spread" and "take these (Paxil)" and see him in two weeks. No kidding! He told me to put away my notes charting the symptoms, he didn't even want to hear about any ofit. This doctor was my ally for years. Who or what did he hear or read to make him do this 180 on me? He went from the previous week's visit of saying he just didn't know what to do for me to takingthis new position that I am "over it". He has gone on vacationthis week so when my wits finally returned he is not available to ask that very question. I am sure this story isn't over, yet.My best to you all. Hopes for a pain free day. With Love, Lyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Pam, Did your doctor do new blocks on you to confirm that it was RSD in the new areas? Or did he diagnose it by your description of symptoms? Have you found a new doctor yet.... And how are you going about it? Other than just calling each dr in the area and asking, Do you treat RSD as a speciality I'm at a loss...must be this darn blank space in my head! Hopes for a pain free day for all of us. Lyn Pamela Fredette <patches13033@y...> wrote: > lyn,,, mine has spread from my shoulders to back face scalp neck and left leg right leg and now my left hip it scares me but if you look it up it does spread ..rsd.org or rsd hope they have it there i have a lot more sites let me know from doctors also about it spreading soft hugs to you less pain pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Pam, Did your doctor do new blocks on you to confirm that it was RSD in the new areas? Or did he diagnose it by your description of symptoms? Have you found a new doctor yet.... And how are you going about it? Other than just calling each dr in the area and asking, Do you treat RSD as a speciality I'm at a loss...must be this darn blank space in my head! Hopes for a pain free day for all of us. Lyn Pamela Fredette <patches13033@y...> wrote: > lyn,,, mine has spread from my shoulders to back face scalp neck and left leg right leg and now my left hip it scares me but if you look it up it does spread ..rsd.org or rsd hope they have it there i have a lot more sites let me know from doctors also about it spreading soft hugs to you less pain pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Tricia, Interesting to note that when he did his sham of an exam he compared my cold left side to my now cold right side and, of course, noted no difference!!!! Duh!! That is because it has spread! And, of course, my face is like an ice cube but it matches the rest of my body coldness. So nothing wrong there, either! There is no visible sign at this point. Just the pain and ache and other common sensations that I know all too well. My left arm hurts even when I use my knife to cut my food as I press down. Guess that is my imagination. And because my right foot and leg matched the pain in my left original site.....Well, let's through up our hands and just say " I'm over it " this must be something new and it's all in my head! I've been around the block and I know what this is and that's a fact. So I'll do what it takes to help myself. When your RSD spread what did your doctor do to confirm that: It is very helpful to have your feedback. Thank you so much for the encouragement. With love, Lyn Tricia Skiba <eeyore3975@y...> wrote: > Lyn - It must be so awful for you to try and comprehend this turn that your doc has taken on you. Unfortunately, you are probably right in thinking that he had a conversation with one of the " bad ones " who only think they know it all. I love these doctors who claim RSD doesn't spread.....mine started as CRPS type II in my right leg; now I have generalized type I in my left leg, both arm and my back as well. I suppose they could say that pain is all in my head, but it wouldn't explain the swelling, the coldness or the discoloration would it? Wonder what brilliant excuse the nay-sayers would come up with for that. I'm pretty sure that you can print out info about how RSD/CRPS can spread from the www.rsds.org website. It's one of those false myths that they're trying (unsucessfully obviously) to counterract. Hang in there and I hope that you'll be able to work all of this out. Tricia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Tricia, Interesting to note that when he did his sham of an exam he compared my cold left side to my now cold right side and, of course, noted no difference!!!! Duh!! That is because it has spread! And, of course, my face is like an ice cube but it matches the rest of my body coldness. So nothing wrong there, either! There is no visible sign at this point. Just the pain and ache and other common sensations that I know all too well. My left arm hurts even when I use my knife to cut my food as I press down. Guess that is my imagination. And because my right foot and leg matched the pain in my left original site.....Well, let's through up our hands and just say " I'm over it " this must be something new and it's all in my head! I've been around the block and I know what this is and that's a fact. So I'll do what it takes to help myself. When your RSD spread what did your doctor do to confirm that: It is very helpful to have your feedback. Thank you so much for the encouragement. With love, Lyn Tricia Skiba <eeyore3975@y...> wrote: > Lyn - It must be so awful for you to try and comprehend this turn that your doc has taken on you. Unfortunately, you are probably right in thinking that he had a conversation with one of the " bad ones " who only think they know it all. I love these doctors who claim RSD doesn't spread.....mine started as CRPS type II in my right leg; now I have generalized type I in my left leg, both arm and my back as well. I suppose they could say that pain is all in my head, but it wouldn't explain the swelling, the coldness or the discoloration would it? Wonder what brilliant excuse the nay-sayers would come up with for that. I'm pretty sure that you can print out info about how RSD/CRPS can spread from the www.rsds.org website. It's one of those false myths that they're trying (unsucessfully obviously) to counterract. Hang in there and I hope that you'll be able to work all of this out. Tricia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Tricia, Interesting to note that when he did his sham of an exam he compared my cold left side to my now cold right side and, of course, noted no difference!!!! Duh!! That is because it has spread! And, of course, my face is like an ice cube but it matches the rest of my body coldness. So nothing wrong there, either! There is no visible sign at this point. Just the pain and ache and other common sensations that I know all too well. My left arm hurts even when I use my knife to cut my food as I press down. Guess that is my imagination. And because my right foot and leg matched the pain in my left original site.....Well, let's through up our hands and just say " I'm over it " this must be something new and it's all in my head! I've been around the block and I know what this is and that's a fact. So I'll do what it takes to help myself. When your RSD spread what did your doctor do to confirm that: It is very helpful to have your feedback. Thank you so much for the encouragement. With love, Lyn Tricia Skiba <eeyore3975@y...> wrote: > Lyn - It must be so awful for you to try and comprehend this turn that your doc has taken on you. Unfortunately, you are probably right in thinking that he had a conversation with one of the " bad ones " who only think they know it all. I love these doctors who claim RSD doesn't spread.....mine started as CRPS type II in my right leg; now I have generalized type I in my left leg, both arm and my back as well. I suppose they could say that pain is all in my head, but it wouldn't explain the swelling, the coldness or the discoloration would it? Wonder what brilliant excuse the nay-sayers would come up with for that. I'm pretty sure that you can print out info about how RSD/CRPS can spread from the www.rsds.org website. It's one of those false myths that they're trying (unsucessfully obviously) to counterract. Hang in there and I hope that you'll be able to work all of this out. Tricia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn, Here are some sites that state RSD does spread...hope these help. Click here: Ask Jeeves Answer - Reflex Sympathetic Dystrophy Ask Jeeves Answer - Reflex Sympathetic DystrophyClick here: Click here: Ask Jeeves Answer - Reflex Sympathetic Dystrophy Click here: Ask Jeeves Answer - Reflex Sympathetic Dystrophy if you go to askjeeves.com there are about 1000 sites almost all say RSD spreads...the last one I posted has alot of information I have never seen..it's very interesting...Hugs..Ginny Ginny,That's what I mean about being stunned into silence. I know that I've read it, seen it, felt it, yet when my own doctor looked me in the eye with his "smile of assurance" and said that it completely short circuited my thinking processes and I went blank. No arguments, nothing would come out of my mouth. I was....stunned.Do you have any specific quotes from authorities (that discuss spreading from lower body to upper) that I might use? I can't help but think that he called up one of his old croonies because he just didn't know what to do and he got one of the "bad guys". I wonder if I should waste my time on him. I think I might be fighting an impossible battle with him if he is so sure of himself. If I knew of another doctor I'd change today. Thank you and hope you are managing with a low level pain today. You posted about meditating and biofeedback. I had that training and use it. It can make a huge difference in calming down the body. It does take practice and dedication on a daily basis, I think. Thank you. It is good to hear from you.With love, LynGinny Barrientos <hisloss123@y...> wrote:> Lyn,> > > I am so sorry that your dr would all of a sudden do that to you. It's stressful enough to have, live and breathe this disorder without drs doing that. I hope on his vacation he has a change of heart or reads up on RSD more..It can spread and has with mine...I have it in my neck and right arm to full upper body and now in my left leg too. Over 8 months it has went to stage 1 to stage 2 also. I can't believe a dr would say RSD doesn't spread...it's in the neurology society of america and the neurology med journals that it does spread and can spread slowly or rapidly depending on the person. I hope everything works out for you and drs...Hugs..Ginny> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 lyn.....my doctor said it will spread and even if you have a minor injury it can go there...mine is from full body injury and i knew it would spread...the hardest part is my face and my scalp....sometimes my ears cant stand noise..i just went in the phonebook and called now i have an appointment with a doctor that treats mind and body but hes a pain doctori go deci....havent had blocks no insurance.....hope you do better i will pray my brain is empty a lot you caught me at a good moment....soft hugs pamlynlorraine wrote: Pam, Did your doctor do new blocks on you to confirm that it was RSD in the new areas? Or did he diagnose it by your description of symptoms? Have you found a new doctor yet.... And how are you going about it? Other than just calling each dr in the area and asking, Do you treat RSD as a speciality I'm at a loss...must be this darn blank space in my head! Hopes for a pain free day for all of us.LynPamela Fredette <patches13033@y...> wrote:> lyn,,, mine has spread from my shoulders to back face scalp neck and left leg right leg and now my left hip it scares me but if you look it up it does spread ..rsd.org or rsd hope they have it there i have a lot more sites let me know from doctors also about it spreading soft hugs to you less pain pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 lyn.....my doctor said it will spread and even if you have a minor injury it can go there...mine is from full body injury and i knew it would spread...the hardest part is my face and my scalp....sometimes my ears cant stand noise..i just went in the phonebook and called now i have an appointment with a doctor that treats mind and body but hes a pain doctori go deci....havent had blocks no insurance.....hope you do better i will pray my brain is empty a lot you caught me at a good moment....soft hugs pamlynlorraine wrote: Pam, Did your doctor do new blocks on you to confirm that it was RSD in the new areas? Or did he diagnose it by your description of symptoms? Have you found a new doctor yet.... And how are you going about it? Other than just calling each dr in the area and asking, Do you treat RSD as a speciality I'm at a loss...must be this darn blank space in my head! Hopes for a pain free day for all of us.LynPamela Fredette <patches13033@y...> wrote:> lyn,,, mine has spread from my shoulders to back face scalp neck and left leg right leg and now my left hip it scares me but if you look it up it does spread ..rsd.org or rsd hope they have it there i have a lot more sites let me know from doctors also about it spreading soft hugs to you less pain pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn - I'm not sure what's up with your doc but I really don't get where he's coming from. I can ceratinly understand how your were stunned by his words and behavior towards you. Would it help to come up with a list of questions to ask him at your next appt?.....like "If this isn't RSD then what is it because it's NOT in my head." If you can't get anywhere with him then, you're right, it's time to move on. My heart goes out to you...I just don't get what he's thinking either. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn - I'm not sure what's up with your doc but I really don't get where he's coming from. I can ceratinly understand how your were stunned by his words and behavior towards you. Would it help to come up with a list of questions to ask him at your next appt?.....like "If this isn't RSD then what is it because it's NOT in my head." If you can't get anywhere with him then, you're right, it's time to move on. My heart goes out to you...I just don't get what he's thinking either. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn - I'm not sure what's up with your doc but I really don't get where he's coming from. I can ceratinly understand how your were stunned by his words and behavior towards you. Would it help to come up with a list of questions to ask him at your next appt?.....like "If this isn't RSD then what is it because it's NOT in my head." If you can't get anywhere with him then, you're right, it's time to move on. My heart goes out to you...I just don't get what he's thinking either. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 What do you do Ginny when doctor just blows that off as those doctors that just want to make a name for themselves? Think will have to fly down to Houston and see 's doctors every few months. I wonder if a doctor in another state like that would take on a patient....anyone ever try this, to go to doctor far away from where you live and if so how did it work out and would they do it long term? I have to do something. How are you Ginny? Have been thinking alot about you and saw you writing about your son. He is a hoot, each time have talked to you I get to hear his sweet voice and he is just wonderful, and funny and smart. Would love to give him a hug, just hearing him makes a person fall in love with him.......you already know I feel that way as always tell you. Give him a hug for me and how is your daughter doing? Are things any better with her handling this rsd? I know she is scared and all, just wonder if things have improved. Take care my friend. Will call you soon. Hugs JoAnn s Momma Re: Re: Doc says I'm "over it"! Lyn, Here are some sites that state RSD does spread...hope these help. Click here: Ask Jeeves Answer - Reflex Sympathetic Dystrophy Ask Jeeves Answer - Reflex Sympathetic DystrophyClick here: Click here: Ask Jeeves Answer - Reflex Sympathetic Dystrophy Click here: Ask Jeeves Answer - Reflex Sympathetic Dystrophy if you go to askjeeves.com there are about 1000 sites almost all say RSD spreads...the last one I posted has alot of information I have never seen..it's very interesting...Hugs..Ginny Ginny,That's what I mean about being stunned into silence. I know that I've read it, seen it, felt it, yet when my own doctor looked me in the eye with his "smile of assurance" and said that it completely short circuited my thinking processes and I went blank. No arguments, nothing would come out of my mouth. I was....stunned.Do you have any specific quotes from authorities (that discuss spreading from lower body to upper) that I might use? I can't help but think that he called up one of his old croonies because he just didn't know what to do and he got one of the "bad guys". I wonder if I should waste my time on him. I think I might be fighting an impossible battle with him if he is so sure of himself. If I knew of another doctor I'd change today. Thank you and hope you are managing with a low level pain today. You posted about meditating and biofeedback. I had that training and use it. It can make a huge difference in calming down the body. It does take practice and dedication on a daily basis, I think. Thank you. It is good to hear from you.With love, LynGinny Barrientos <hisloss123@y...> wrote:> Lyn,> > > I am so sorry that your dr would all of a sudden do that to you. It's stressful enough to have, live and breathe this disorder without drs doing that. I hope on his vacation he has a change of heart or reads up on RSD more..It can spread and has with mine...I have it in my neck and right arm to full upper body and now in my left leg too. Over 8 months it has went to stage 1 to stage 2 also. I can't believe a dr would say RSD doesn't spread...it's in the neurology society of america and the neurology med journals that it does spread and can spread slowly or rapidly depending on the person. I hope everything works out for you and drs...Hugs..Ginny> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn I would suggest for you to call a Teaching Hospital and most likely will find a doctor within there. I think at least would be good place to start at if you have one near enough to drive to. Lyn are you able to drive yourself, or do you fall asleep driving or hurt to much when drive? I struggle very hard to make the 35minute drive to West Memphis to get my teeth cleaned. My body just wants to go to sleep and oh play all sorts of radio things and listen to tapes of Jesus teaching. But still struggle. What is the med some of you on here use to help you stay awake, and do you know if someone with heart troubles can use it? Lyn will be very interested in how you find doctor. I think going to do some calling to the teaching hospital in Memphis and Little Rock both. Not sure how will do but last ditch effort now as where I live Pain Doctors are not common. Take care Lyn and so very sorry you had this doctor treat you so badly. I would of just been so shocked not sure if would not of thrown up right on his shoes!!!! Not on purpose you know, just my stomach would knot up, and my heart would do some kind of flip flop and yep, think throwing up on him might of happened. Then just tell him he does not see what he thinks he is seeing on his shoes, that just a thought in his head, and not real. Yeah, Lyn think you need to go back once but eat alot before go......... Hugs JoAnn s Momma Subject: Re: Doc says I'm " over it " ! > > > Pam, Did your doctor do new blocks on you to confirm that it was > RSD in the new areas? Or did he diagnose it by your description of > symptoms? Have you found a new doctor yet.... And how are you going > about it? Other than just calling each dr in the area and asking, > Do you treat RSD as a speciality I'm at a loss...must be this darn > blank space in my head! Hopes for a pain free day for all of us. > Lyn > > > Pamela Fredette <patches13033@y...> wrote: > > lyn,,, mine has spread from my shoulders to back face scalp neck > and left leg right leg and now my left hip it scares me but if you > look it up it does spread ..rsd.org or rsd hope they have it there i > have a lot more sites let me know from doctors also about it > spreading soft hugs to you less pain pam > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn I would suggest for you to call a Teaching Hospital and most likely will find a doctor within there. I think at least would be good place to start at if you have one near enough to drive to. Lyn are you able to drive yourself, or do you fall asleep driving or hurt to much when drive? I struggle very hard to make the 35minute drive to West Memphis to get my teeth cleaned. My body just wants to go to sleep and oh play all sorts of radio things and listen to tapes of Jesus teaching. But still struggle. What is the med some of you on here use to help you stay awake, and do you know if someone with heart troubles can use it? Lyn will be very interested in how you find doctor. I think going to do some calling to the teaching hospital in Memphis and Little Rock both. Not sure how will do but last ditch effort now as where I live Pain Doctors are not common. Take care Lyn and so very sorry you had this doctor treat you so badly. I would of just been so shocked not sure if would not of thrown up right on his shoes!!!! Not on purpose you know, just my stomach would knot up, and my heart would do some kind of flip flop and yep, think throwing up on him might of happened. Then just tell him he does not see what he thinks he is seeing on his shoes, that just a thought in his head, and not real. Yeah, Lyn think you need to go back once but eat alot before go......... Hugs JoAnn s Momma Subject: Re: Doc says I'm " over it " ! > > > Pam, Did your doctor do new blocks on you to confirm that it was > RSD in the new areas? Or did he diagnose it by your description of > symptoms? Have you found a new doctor yet.... And how are you going > about it? Other than just calling each dr in the area and asking, > Do you treat RSD as a speciality I'm at a loss...must be this darn > blank space in my head! Hopes for a pain free day for all of us. > Lyn > > > Pamela Fredette <patches13033@y...> wrote: > > lyn,,, mine has spread from my shoulders to back face scalp neck > and left leg right leg and now my left hip it scares me but if you > look it up it does spread ..rsd.org or rsd hope they have it there i > have a lot more sites let me know from doctors also about it > spreading soft hugs to you less pain pam > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 Lyn I would suggest for you to call a Teaching Hospital and most likely will find a doctor within there. I think at least would be good place to start at if you have one near enough to drive to. Lyn are you able to drive yourself, or do you fall asleep driving or hurt to much when drive? I struggle very hard to make the 35minute drive to West Memphis to get my teeth cleaned. My body just wants to go to sleep and oh play all sorts of radio things and listen to tapes of Jesus teaching. But still struggle. What is the med some of you on here use to help you stay awake, and do you know if someone with heart troubles can use it? Lyn will be very interested in how you find doctor. I think going to do some calling to the teaching hospital in Memphis and Little Rock both. Not sure how will do but last ditch effort now as where I live Pain Doctors are not common. Take care Lyn and so very sorry you had this doctor treat you so badly. I would of just been so shocked not sure if would not of thrown up right on his shoes!!!! Not on purpose you know, just my stomach would knot up, and my heart would do some kind of flip flop and yep, think throwing up on him might of happened. Then just tell him he does not see what he thinks he is seeing on his shoes, that just a thought in his head, and not real. Yeah, Lyn think you need to go back once but eat alot before go......... Hugs JoAnn s Momma Subject: Re: Doc says I'm " over it " ! > > > Pam, Did your doctor do new blocks on you to confirm that it was > RSD in the new areas? Or did he diagnose it by your description of > symptoms? Have you found a new doctor yet.... And how are you going > about it? Other than just calling each dr in the area and asking, > Do you treat RSD as a speciality I'm at a loss...must be this darn > blank space in my head! Hopes for a pain free day for all of us. > Lyn > > > Pamela Fredette <patches13033@y...> wrote: > > lyn,,, mine has spread from my shoulders to back face scalp neck > and left leg right leg and now my left hip it scares me but if you > look it up it does spread ..rsd.org or rsd hope they have it there i > have a lot more sites let me know from doctors also about it > spreading soft hugs to you less pain pam > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 > Lyn Im so sorry to hear about all that you have been through recently. Please understand that you arent alone in any of this and that if your doctor is taking this type of an attitude then he isnt worth your time at this point...I hope that you have enough meds to get you through this difficult time and that you are able to find a capable, kind hearted, patient doctor!! Hugs Donna > Right now I am searching for a new doctor…seems mine picked up > some > information in the last week or two and has decided that I am > " over > it " . Those are his words. That visit stunned me into silence > for > several days. He explained away the pain as being side effects of > Prednisone, said " RSD doesn't spread " and " take these ( > Paxil) " and > see him in two weeks. No kidding! He told me to put away my notes > charting the symptoms, he didn't even want to hear about any of > it. > This doctor was my ally for years. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2004 Report Share Posted November 22, 2004 > Lyn Im so sorry to hear about all that you have been through recently. Please understand that you arent alone in any of this and that if your doctor is taking this type of an attitude then he isnt worth your time at this point...I hope that you have enough meds to get you through this difficult time and that you are able to find a capable, kind hearted, patient doctor!! Hugs Donna > Right now I am searching for a new doctor…seems mine picked up > some > information in the last week or two and has decided that I am > " over > it " . Those are his words. That visit stunned me into silence > for > several days. He explained away the pain as being side effects of > Prednisone, said " RSD doesn't spread " and " take these ( > Paxil) " and > see him in two weeks. No kidding! He told me to put away my notes > charting the symptoms, he didn't even want to hear about any of > it. > This doctor was my ally for years. Quote Link to comment Share on other sites More sharing options...
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