Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Becky, thanks, but its my primary dr., that refuses to write me any scripts at all. I wish that I could make it to 's Hopkins, maybe I could get some answers. It is jsut too far and no finances to go either. I will look around here though. The hard thing is just explaining how I feel, and the aching and paina that I am in. I think that my dr thinks that sarc is painless or something. who knows. LynneMac Tosh wrote: Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias <children8_2000 (AT) yahoo (DOT) com> wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. To My New Family Love Lynne Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Becky, thanks, but its my primary dr., that refuses to write me any scripts at all. I wish that I could make it to 's Hopkins, maybe I could get some answers. It is jsut too far and no finances to go either. I will look around here though. The hard thing is just explaining how I feel, and the aching and paina that I am in. I think that my dr thinks that sarc is painless or something. who knows. LynneMac Tosh wrote: Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias <children8_2000 (AT) yahoo (DOT) com> wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. To My New Family Love Lynne Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Lynne,Maybe you can go to another university sarcoidosis clinic. There is one at MUSC in South Carolina. In California there is Dr. Sharma at USC. And there are other clinics I have read about on this group site. I feel for you. I KNOW how much it can hurt. Please know that I'm thinking of you and that you'll be in my prayers.Blessings,Beckylynne zacharias wrote: Becky, thanks, but its my primary dr., that refuses to write me any scripts at all. I wish that I could make it to 's Hopkins, maybe I could get some answers. It is jsut too far and no finances to go either. I will look around here though. The hard thing is just explaining how I feel, and the aching and paina that I am in. I think that my dr thinks that sarc is painless or something. who knows. LynneMac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias <children8_2000 (AT) yahoo (DOT) com> wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. To My New Family Love Lynne Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Lynne,Maybe you can go to another university sarcoidosis clinic. There is one at MUSC in South Carolina. In California there is Dr. Sharma at USC. And there are other clinics I have read about on this group site. I feel for you. I KNOW how much it can hurt. Please know that I'm thinking of you and that you'll be in my prayers.Blessings,Beckylynne zacharias wrote: Becky, thanks, but its my primary dr., that refuses to write me any scripts at all. I wish that I could make it to 's Hopkins, maybe I could get some answers. It is jsut too far and no finances to go either. I will look around here though. The hard thing is just explaining how I feel, and the aching and paina that I am in. I think that my dr thinks that sarc is painless or something. who knows. LynneMac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias <children8_2000 (AT) yahoo (DOT) com> wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. To My New Family Love Lynne Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. Moody friends. Drama queens. Your life? Nope! - their life, your story. Play Sims Stories at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Lynne, you need to find another primary care doctor! Are you on Medicare? If so, you don't need a referral to see a pain specialist, unless they themselves require it. How far are you from Chicago? FSR (Foundation for Sarcoidosis Research) is based in Chicago, so I imagine they could give you the names of some good/excellent sarc doctors. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: children8_2000@...Date: Tue, 18 Sep 2007 06:08:14 -0700Subject: Re: Painlz Becky, thanks, but its my primary dr., that refuses to write me any scripts at all. I wish that I could make it to 's Hopkins, maybe I could get some answers. It is jsut too far and no finances to go either. I will look around here though. The hard thing is just explaining how I feel, and the aching and paina that I am in. I think that my dr thinks that sarc is painless or something. who knows. LynneMac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias <children8_2000 (AT) yahoo (DOT) com> wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. To My New Family Love Lynne Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. Make your little one a shining star! Shine on! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Lynne, you need to find another primary care doctor! Are you on Medicare? If so, you don't need a referral to see a pain specialist, unless they themselves require it. How far are you from Chicago? FSR (Foundation for Sarcoidosis Research) is based in Chicago, so I imagine they could give you the names of some good/excellent sarc doctors. Ramblin' Rose Moderator A merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: children8_2000@...Date: Tue, 18 Sep 2007 06:08:14 -0700Subject: Re: Painlz Becky, thanks, but its my primary dr., that refuses to write me any scripts at all. I wish that I could make it to 's Hopkins, maybe I could get some answers. It is jsut too far and no finances to go either. I will look around here though. The hard thing is just explaining how I feel, and the aching and paina that I am in. I think that my dr thinks that sarc is painless or something. who knows. LynneMac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias <children8_2000 (AT) yahoo (DOT) com> wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. To My New Family Love Lynne Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. Make your little one a shining star! Shine on! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Rose, I am not that far from Chicago. Yes I do have medicare, but my husbands ins is billed first, it that a problem? I will try to find a phone number from tht place that you mentioned, unless you have it handy. I will try anything, b/c I am actually turning into a b***h with everyone, and I am sure its b/c of the pain that I have to deal with. Thanks LynneRose wrote: Lynne, you need to find another primary care doctor! Are you on Medicare? If so, you don't need a referral to see a pain specialist, unless they themselves require it. How far are you from Chicago? FSR (Foundation for Sarcoidosis Research) is based in Chicago, so I imagine they could give you the names of some good/excellent sarc doctors. Ramblin' RoseModeratorA merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: children8_2000 (AT) yahoo (DOT) comDate: Tue, 18 Sep 2007 06:08:14 -0700Subject: Re: Painlz Becky, thanks, but its my primary dr., that refuses to write me any scripts at all. I wish that I could make it to 's Hopkins, maybe I could get some answers. It is jsut too far and no finances to go either. I will look around here though. The hard thing is just explaining how I feel, and the aching and paina that I am in. I think that my dr thinks that sarc is painless or something. who knows. LynneMac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias <children8_2000 (AT) yahoo (DOT) com> wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. To My New FamilyLove Lynne Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. Make your little one a shining star! Shine on! To My New Family Love Lynne Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Rose, I am not that far from Chicago. Yes I do have medicare, but my husbands ins is billed first, it that a problem? I will try to find a phone number from tht place that you mentioned, unless you have it handy. I will try anything, b/c I am actually turning into a b***h with everyone, and I am sure its b/c of the pain that I have to deal with. Thanks LynneRose wrote: Lynne, you need to find another primary care doctor! Are you on Medicare? If so, you don't need a referral to see a pain specialist, unless they themselves require it. How far are you from Chicago? FSR (Foundation for Sarcoidosis Research) is based in Chicago, so I imagine they could give you the names of some good/excellent sarc doctors. Ramblin' RoseModeratorA merry heart is good medicine. Proverbs 17:22 "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: children8_2000 (AT) yahoo (DOT) comDate: Tue, 18 Sep 2007 06:08:14 -0700Subject: Re: Painlz Becky, thanks, but its my primary dr., that refuses to write me any scripts at all. I wish that I could make it to 's Hopkins, maybe I could get some answers. It is jsut too far and no finances to go either. I will look around here though. The hard thing is just explaining how I feel, and the aching and paina that I am in. I think that my dr thinks that sarc is painless or something. who knows. LynneMac Tosh <macandtosh626 (AT) yahoo (DOT) com> wrote: Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias <children8_2000 (AT) yahoo (DOT) com> wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. To My New FamilyLove Lynne Don't let your dream ride pass you by. Make it a reality with Yahoo! Autos. Make your little one a shining star! Shine on! To My New Family Love Lynne Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day Lynne, Get another MD. Preferably a rheumatologist. The understand joint and ligament pain-- and are more in tune with how sarcoidosis effects us painwise. The other thing I would do is go over to FSR-- FOUNDATION FOR SARCOIDOSIS RESEARCH and order their brochure on Sarcoidosis and the Body. Get several copies, they are cheap--and take them into your quacks. I mean doctors. Here is a great website that Dr. Sharma has developed. http://www.sarcoidosissharma.com/images/Sarcoidosis-CommonlyAskedQuestions-v81904.docSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day Lynne, Get another MD. Preferably a rheumatologist. The understand joint and ligament pain-- and are more in tune with how sarcoidosis effects us painwise. The other thing I would do is go over to FSR-- FOUNDATION FOR SARCOIDOSIS RESEARCH and order their brochure on Sarcoidosis and the Body. Get several copies, they are cheap--and take them into your quacks. I mean doctors. Here is a great website that Dr. Sharma has developed. http://www.sarcoidosissharma.com/images/Sarcoidosis-CommonlyAskedQuestions-v81904.docSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day Lynne, one other thing-- if you have not tried the MSM then do so. Also, cut back on the sugars and sweets, as this increases our neuropathy, and hydrate. TRacie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day Lynne, one other thing-- if you have not tried the MSM then do so. Also, cut back on the sugars and sweets, as this increases our neuropathy, and hydrate. TRacie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Thanks so much for the info. I have been to a rhumy, and he is the one that told me that I have fibro. Then he is the one that told me to get my pain meds from my pcp. HE is the one that thinks that I don't need any pain meds. sheesh! Thats why I have to find my pain meds from 'others'. And I shouldn't have to do that. It's just so frustrating. I will look into this info that you have sent me. Lynnetiodaat@... wrote: In a message dated 9/18/2007 5:06:40 A.M. Pacific Daylight Time, children8_2000 (AT) yahoo (DOT) com writes: My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day Lynne, Get another MD. Preferably a rheumatologist. The understand joint and ligament pain-- and are more in tune with how sarcoidosis effects us painwise. The other thing I would do is go over to FSR-- FOUNDATION FOR SARCOIDOSIS RESEARCH and order their brochure on Sarcoidosis and the Body. Get several copies, they are cheap--and take them into your quacks. I mean doctors. Here is a great website that Dr. Sharma has developed. http://www.sarcoidosissharma.com/images/Sarcoidosis-CommonlyAskedQuestions-v81904.doc See what's new at AOL.com and Make AOL Your Homepage. To My New Family Love Lynne Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Thanks so much for the info. I have been to a rhumy, and he is the one that told me that I have fibro. Then he is the one that told me to get my pain meds from my pcp. HE is the one that thinks that I don't need any pain meds. sheesh! Thats why I have to find my pain meds from 'others'. And I shouldn't have to do that. It's just so frustrating. I will look into this info that you have sent me. Lynnetiodaat@... wrote: In a message dated 9/18/2007 5:06:40 A.M. Pacific Daylight Time, children8_2000 (AT) yahoo (DOT) com writes: My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day Lynne, Get another MD. Preferably a rheumatologist. The understand joint and ligament pain-- and are more in tune with how sarcoidosis effects us painwise. The other thing I would do is go over to FSR-- FOUNDATION FOR SARCOIDOSIS RESEARCH and order their brochure on Sarcoidosis and the Body. Get several copies, they are cheap--and take them into your quacks. I mean doctors. Here is a great website that Dr. Sharma has developed. http://www.sarcoidosissharma.com/images/Sarcoidosis-CommonlyAskedQuestions-v81904.doc See what's new at AOL.com and Make AOL Your Homepage. To My New Family Love Lynne Be a better Globetrotter. Get better travel answers from someone who knows.Yahoo! Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Thanks again , I do have an occational candy bar, but I also do drink a lot of water. I will deffinately keep that up. Lynnetiodaat@... wrote: In a message dated 9/18/2007 5:06:40 A.M. Pacific Daylight Time, children8_2000 (AT) yahoo (DOT) com writes: My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day Lynne, one other thing-- if you have not tried the MSM then do so. Also, cut back on the sugars and sweets, as this increases our neuropathy, and hydrate. TRacie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. To My New Family Love Lynne Need a vacation? Get great deals to amazing places on Yahoo! Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 Thanks again , I do have an occational candy bar, but I also do drink a lot of water. I will deffinately keep that up. Lynnetiodaat@... wrote: In a message dated 9/18/2007 5:06:40 A.M. Pacific Daylight Time, children8_2000 (AT) yahoo (DOT) com writes: My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day Lynne, one other thing-- if you have not tried the MSM then do so. Also, cut back on the sugars and sweets, as this increases our neuropathy, and hydrate. TRacie NS Co-owner/moderator See what's new at AOL.com and Make AOL Your Homepage. To My New Family Love Lynne Need a vacation? Get great deals to amazing places on Yahoo! Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 I have been to a rhumy, and he is the one that told me that I have fibro. Then he is the one that told me to get my pain meds from my pcp. HE is the one that thinks that I don't need any pain meds. sheesh! Thats why I have to find my pain meds from 'others' Lynne, It's the others that have your pcp worried about what you might be doing. You have to REALLY explain that the Rheumi has told you to have the PCP write your scripts for pain control. If your PCP won't do that-- find another one. If we end up in Urgent care or Convenient cares getting pain meds-- then they send a letter to the PCP that you came in wanting pain meds-- then the wrong signal is sent, and your PCP is thinking you are abusing them. So=== go back to the PCP, and set up a contract with him that you will go through him for your pain meds. And stick to your contract. Once he sees that you aren't circumnavigating him- he will become more willing to help you. Write down what you are experiencing, and take it in with you. Get your husband to go into the PCP with you, so that you have a second voice to explain how your pain is effecting you. If you aren't on antidepressants, and he suggests them--- realize that this is to help regulate your sleep cycles, and that will help with your pain issues. Remember that you have to have the seratonin levels in check to help send the correct signals to assist with pain control. All those hormones that contribute to pain control need to be in balance, and as you know, we have to address one issue at a time. It's not an insult that our MD's tell us we need an antidepressant, IT IS part of controlling pain. Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2007 Report Share Posted September 19, 2007 I have been to a rhumy, and he is the one that told me that I have fibro. Then he is the one that told me to get my pain meds from my pcp. HE is the one that thinks that I don't need any pain meds. sheesh! Thats why I have to find my pain meds from 'others' Lynne, It's the others that have your pcp worried about what you might be doing. You have to REALLY explain that the Rheumi has told you to have the PCP write your scripts for pain control. If your PCP won't do that-- find another one. If we end up in Urgent care or Convenient cares getting pain meds-- then they send a letter to the PCP that you came in wanting pain meds-- then the wrong signal is sent, and your PCP is thinking you are abusing them. So=== go back to the PCP, and set up a contract with him that you will go through him for your pain meds. And stick to your contract. Once he sees that you aren't circumnavigating him- he will become more willing to help you. Write down what you are experiencing, and take it in with you. Get your husband to go into the PCP with you, so that you have a second voice to explain how your pain is effecting you. If you aren't on antidepressants, and he suggests them--- realize that this is to help regulate your sleep cycles, and that will help with your pain issues. Remember that you have to have the seratonin levels in check to help send the correct signals to assist with pain control. All those hormones that contribute to pain control need to be in balance, and as you know, we have to address one issue at a time. It's not an insult that our MD's tell us we need an antidepressant, IT IS part of controlling pain. Tracie NS Co-owner/moderatorSee what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Hi Lynne, I had a long battle trying to get my PCP to prescribe pain relief for me too. I would have changed drs. , but it's such a pain to get all your records together especially if you have several specialists also. Then you have to start all over again relating to the new dr all of your history. When you are sick and in pain , it feels like a mountain you have to climb! Anyway, back to the point, my PCP finally precribed vicodin but that wasn't enough. He then prescribe Fentanyl Duragesic patches. They have helped me a lot for the pain. Than I still have the vicodin for any breakthrough pain. I agree with Becky about these doctors not being educated enough on the disease and the pain that's involved. I also relate with the frustration about not being able to do the things that used to be so easy for us. Don't worry about venting, that's what we are here for!! I hope you get some help soon . Keep on trying, Hugs, Debbie T. Mac Tosh wrote: Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2007 Report Share Posted September 20, 2007 Hi Lynne, I had a long battle trying to get my PCP to prescribe pain relief for me too. I would have changed drs. , but it's such a pain to get all your records together especially if you have several specialists also. Then you have to start all over again relating to the new dr all of your history. When you are sick and in pain , it feels like a mountain you have to climb! Anyway, back to the point, my PCP finally precribed vicodin but that wasn't enough. He then prescribe Fentanyl Duragesic patches. They have helped me a lot for the pain. Than I still have the vicodin for any breakthrough pain. I agree with Becky about these doctors not being educated enough on the disease and the pain that's involved. I also relate with the frustration about not being able to do the things that used to be so easy for us. Don't worry about venting, that's what we are here for!! I hope you get some help soon . Keep on trying, Hugs, Debbie T. Mac Tosh wrote: Lynne,May I reply to your message too? I take vicodin ES sometimes 3 times a day when in a bad flare. If my dr wouldn't believe me about my pain, I would CHANGE doctors. As pts we have a right to be as pain free as possible (I'm an RN). In fact, the joint commission for accreditation pointed this out when I was working in a large local hospital (I've been on medical leave for 2 yrs) and we changed our daily assessment flow sheets to reflect the pt's level of pain (1-10) and what we did to relieve their pain AND then their response to our interventions. If you can't resolve this with your doctor maybe an evaluation with a pain specialist would be in order. Problem with this disease is that many physicians are just undereducated about it and don't believe/listen to their pts. You are NOT asking too much...I can't imagine the pain you must be going through. BTW I have several specialists here and I go to s Hopkins in Baltimore, MD (I live in Florida) and not one of them has given me a hard time about pain meds. My primary care dr writes my scripts for the vicodin so there is just one dr doing so...Blessings,Beckylynne zacharias wrote: , My dr's here just don't think that I need any pain killers, at all. I take 5-6 generic ibuprofin at a time, and some days every 4-5 hours. They tell me not to do it, b/c it is bad for my stomach, well, then I need somke vicodins, which then I take 2-3 in a day I just don't understand what the problem is, like why I can't get other things to take, and they don't believe me that I am in pain. How do I convince them that my pain is real? I tll them that my muscles ache really bad, and they also hurt. I have been dx'd with fibromyalgia in my legs and arms too, and also arthritis in my knee. All I want to do is function, not run a marathon. I just want to be able to vacuum the floor, and go for small walks with my kids. Is that so bad? Sorry, just needed to vent a little bit. thank you Lynne Mommer <mmommer (AT) msn (DOT) com> wrote: I watched the carol Burnett show too between that and I Love Lucy I was always laughing.!!!!! I go to a massage therapist each week and get deep tissue 1 hr massage. Sarc is a connective tissue decease, meaning the muscles actually glue them selves to each other and can not slide and work and causes intense pain. Then is my arsenal of drugs. I use ibprofin for bone pain and oxycodone 5/325. Then at night I have ocxycodone 10mg tabs I add in with that. I can mostly be like a normal person until they wear off. They considered putting in an infusion pump but it would interfear with my ICD pacemaker. I fainted last week and landed right on my kisser. They checked my rythum strips today and they were just fine. So I must have leaked to much and pumped dry again. I have a pig valve which works great most of the time, once and awhile it sticks open to long and causes insane chest pains, felt down my arm and up my neck. The rest of the time im just fine. M To My New Family Love Lynne Pinpoint customers who are looking for what you sell. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
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