Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 I am in sooooo much pain from my sarcoidosis. I recently got out of the hospital and I dont feel any better. You just lay and ball up in the bed and dont move. The most pain is in my legs and chest(pulmonary sarcoidosis). I am 28 and I have been diagnosed since 2003 and I have only had about a 6mo. rest period. I feel like I am a science experiment and doctors are just practicing on me. I have been diagnosed but when you need pain meds all the time they treat you like you want them for fun not pain and that hurts more than the sarcoid.I just want to find a doctor who cares and can give the feeling that they want to help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 I don't have sarcoidosis, but I do understand about chronic pain and doctors thinking you're just looking for a fix. I have chronic headaches for which I've been on various narcotic pain meds for several years. More recently, I have been having a lot of trouble with my teeth due to acid reflux and the resulting erosion of the enamel on my teeth. I am getting dentures on Tuesday. In the meantime, I am taking dilaudid every four hours around the clock, and I'm worried about running out of medication over the weekend. Yesterday, I spent hours on the phone with my dentist, oral surgeon, and pain management doctor trying to make sure I have enough pain medicine to get me through to Tuesday. I even had my home nurse call them as she could vouche for the amount of pain I'm in. None of that mattered to any of them. All any of them cared about was that I'm not supposed to get more meds until next week. My pain gets so bad I'm literally wanting to climb walls, and they don't want to give me 10 more pills so I can make it until my oral surgeon in three days. I just don't understand it. Tracey Sent via BlackBerry from T-Mobile The pain of Sarcoidosis I am in sooooo much pain from my sarcoidosis. I recently got out of the hospital and I dont feel any better. You just lay and ball up in the bed and dont move. The most pain is in my legs and chest(pulmonary sarcoidosis). I am 28 and I have been diagnosed since 2003 and I have only had about a 6mo. rest period. I feel like I am a science experiment and doctors are just practicing on me. I have been diagnosed but when you need pain meds all the time they treat you like you want them for fun not pain and that hurts more than the sarcoid.I just want to find a doctor who cares and can give the feeling that they want to help. ------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick Community Message Archives-/messages Chat:- Scheduled Chats at /chat Bookmarks:- Add a website URL you have found useful. /links Personal Complaints or problems:- Please contact a moderator email: -owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into groups at your convenience and receive no email. To modify your subscription settings please visit:- /join To subscribe or unsubscribe please email:- -subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician. ~~~~ *** ~~~ *** ~~~ *** ~~~~ When nothing is sure, everything is possible. --- Margaret Drabble ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2008 Report Share Posted May 31, 2008 I don't have sarcoidosis, but I do understand about chronic pain and doctors thinking you're just looking for a fix. I have chronic headaches for which I've been on various narcotic pain meds for several years. More recently, I have been having a lot of trouble with my teeth due to acid reflux and the resulting erosion of the enamel on my teeth. I am getting dentures on Tuesday. In the meantime, I am taking dilaudid every four hours around the clock, and I'm worried about running out of medication over the weekend. Yesterday, I spent hours on the phone with my dentist, oral surgeon, and pain management doctor trying to make sure I have enough pain medicine to get me through to Tuesday. I even had my home nurse call them as she could vouche for the amount of pain I'm in. None of that mattered to any of them. All any of them cared about was that I'm not supposed to get more meds until next week. My pain gets so bad I'm literally wanting to climb walls, and they don't want to give me 10 more pills so I can make it until my oral surgeon in three days. I just don't understand it. Tracey Sent via BlackBerry from T-Mobile The pain of Sarcoidosis I am in sooooo much pain from my sarcoidosis. I recently got out of the hospital and I dont feel any better. You just lay and ball up in the bed and dont move. The most pain is in my legs and chest(pulmonary sarcoidosis). I am 28 and I have been diagnosed since 2003 and I have only had about a 6mo. rest period. I feel like I am a science experiment and doctors are just practicing on me. I have been diagnosed but when you need pain meds all the time they treat you like you want them for fun not pain and that hurts more than the sarcoid.I just want to find a doctor who cares and can give the feeling that they want to help. ------------------------------------ ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick Community Message Archives-/messages Chat:- Scheduled Chats at /chat Bookmarks:- Add a website URL you have found useful. /links Personal Complaints or problems:- Please contact a moderator email: -owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into groups at your convenience and receive no email. To modify your subscription settings please visit:- /join To subscribe or unsubscribe please email:- -subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician. ~~~~ *** ~~~ *** ~~~ *** ~~~~ When nothing is sure, everything is possible. --- Margaret Drabble ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
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