Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 Does the pain that all of you experience feel as if someone has a really, really tight grip around your rib cage, from your shoulder blade back around and over your ribs? I have been having this off and on for a few months but I had put it off to sore muscles but it is only on the right side and I have not done anything to pull any muscles. I was just curious. Thanks. in TX PSC '01 Crohns =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 Yes, that is exactly what it feels like and if you go to the ER they want to do an ECG and look at your heart; many of the ER"s have no experience with PSC patients.-----Original Message-----From: [mailto: ]On Behalf Of WilkinsonSent: Thursday, October 04, 2007 11:38 AMTo: Subject: RUQ PainDoes the pain that all of you experience feel as if someone has a really, really tight grip around your rib cage, from your shoulder blade back around and over your ribs? I have been having this off and on for a few months but I had put it off to sore muscles but it is only on the right side and I have not done anything to pull any muscles. I was just curious. Thanks. in TXPSC '01Crohns===========================================================This message is confidential, intended onlyfor the named recipient(s) and may containinformation that is privileged or exempt fromdisclosure under applicable law. If you arenot the intended recipient(s), you are notifiedthat the dissemination, distribution or copyingof this message is strictly prohibited. If youreceived this message in error, or are not thenamed recipient(s), please notify the senderand delete this e-mail from your computer.ETMC has implemented secure messaging forcertain types of messages. For more informationabout our secure messaging system, go to: http://www.etmc.org/mail/Thank you.===========================================================The contents of this electronic mail message and any attachments are confidential, possibly privileged and intended for the addressee(s) only. Only the addressee(s) may read, disseminate, retain or otherwise use this message. If received in error, please immediately inform the sender and then delete this message without disclosing its contents to anyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 Yes, I work at a Hospital and I was surprised at how many didn't know. I have had one ER doc here that knew what I was talking about when I was a patient. I was impressed. I have noticed that newer physicians do seem to know more about it than the older guys. Due to the fact that we are a small rural hospital and I have been here for 15 years, we are more like a family so they are learning about PSC, which makes it nice. Thanks for the info. >>> " Biette, Beth " 10/4/2007 10:46 AM >>> Yes, that is exactly what it feels like and if you go to the ER they want to do an ECG and look at your heart; many of the ER " s have no experience with PSC patients. RUQ Pain Does the pain that all of you experience feel as if someone has a really, really tight grip around your rib cage, from your shoulder blade back around and over your ribs? I have been having this off and on for a few months but I had put it off to sore muscles but it is only on the right side and I have not done anything to pull any muscles. I was just curious. Thanks. in TX PSC '01 Crohns =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc. <http://www.etmc.org/mail/> org/mail/ Thank you. =========================================================== ----------------------------------------- The contents of this electronic mail message and any attachments are confidential, possibly privileged and intended for the addressee(s) only. Only the addressee(s) may read, disseminate, retain or otherwise use this message. If received in error, please immediately inform the sender and then delete this message without disclosing its contents to anyone. =========================================================== This message is confidential, intended only for the named recipient(s) and may contain information that is privileged or exempt from disclosure under applicable law. If you are not the intended recipient(s), you are notified that the dissemination, distribution or copying of this message is strictly prohibited. If you received this message in error, or are not the named recipient(s), please notify the sender and delete this e-mail from your computer. ETMC has implemented secure messaging for certain types of messages. For more information about our secure messaging system, go to: http://www.etmc.org/mail/ Thank you. =========================================================== BEGIN:VCARD VERSION:2.1 X-GWTYPE:USER FN:Wilkinson, ORG:;Human Resources EMAIL;WORK;PREF;NGW:lindawilkinson@... N:Wilkinson; END:VCARD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 When my daughtger was pregnant in 2001 for her first child I had to educate the OB MD on her PSC: he was a high risk specialist and had no idea what her diagnosis meant!!! RUQ PainDoes the pain that all of you experience feel as if someone has a really, really tight grip around your rib cage, from your shoulder blade back around and over your ribs? I have been having this off and on for a few months but I had put it off to sore muscles but it is only on the right side and I have not done anything to pull any muscles. I was just curious. Thanks. in TXPSC '01Crohns===========================================================This message is confidential, intended onlyfor the named recipient(s) and may containinformation that is privileged or exempt fromdisclosure under applicable law. If you arenot the intended recipient(s), you are notifiedthat the dissemination, distribution or copyingof this message is strictly prohibited. If youreceived this message in error, or are not thenamed recipient(s), please notify the senderand delete this e-mail from your computer.ETMC has implemented secure messaging forcertain types of messages. For more informationabout our secure messaging system, go to: http://www.etmc. <http://www.etmc.org/mail/> org/mail/Thank you.===========================================================-----------------------------------------The contents of this electronic mail message and any attachmentsare confidential, possibly privileged and intended for theaddressee(s) only. Only the addressee(s) may read, disseminate,retain or otherwise use this message. If received in error, pleaseimmediately inform the sender and then delete this message withoutdisclosing its contents to anyone.===========================================================This message is confidential, intended onlyfor the named recipient(s) and may containinformation that is privileged or exempt fromdisclosure under applicable law. If you arenot the intended recipient(s), you are notifiedthat the dissemination, distribution or copyingof this message is strictly prohibited. If youreceived this message in error, or are not thenamed recipient(s), please notify the senderand delete this e-mail from your computer.ETMC has implemented secure messaging forcertain types of messages. For more informationabout our secure messaging system, go to: http://www.etmc.org/mail/Thank you.===========================================================The contents of this electronic mail message and any attachments are confidential, possibly privileged and intended for the addressee(s) only. Only the addressee(s) may read, disseminate, retain or otherwise use this message. If received in error, please immediately inform the sender and then delete this message without disclosing its contents to anyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 That's a pretty good description! Right now it feels like a sword shoved through my right side, or a ball of broken glass is shoved under my ribcage. > > Does the pain that all of you experience feel as if someone has a really, really tight grip around your rib cage, from your shoulder blade back around and over your ribs? I have been having this off and on for a few months but I had put it off to sore muscles but it is only on the right side and I have not done anything to pull any muscles. I was just curious. Thanks. > in TX > PSC '01 > Crohns Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 These discussions on pain in PSC have made me think that maybe we need a good study on pain in PSC. Then we'd have something authoritative to show when doctors say that PSC doesn't cause pain. We could put together a simple poll on this site easily, but what we really need is a professionally designed and administered survey. Then maybe doctors could spot patterns and associate them with complications and treatments. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 Dr. Pratt; Massachusetts General tranplant surgeon does believe in pain with PSC and so does Dr. Nina Sax, Albany, NY gastroenterologist; however they don't advise anything for relief; that it just needs to pass.-----Original Message-----From: [mailto: ]On Behalf Of athan Sent: Thursday, October 04, 2007 3:16 PMTo: Subject: Re: Re: RUQ PainThese discussions on pain in PSC have made me think that maybe we need a good study on pain in PSC. Then we'd have something authoritative to show when doctors say that PSC doesn't cause pain. We could put together a simple poll on this site easily, but what we really need is a professionally designed and administered survey. Then maybe doctors could spot patterns and associate them with complications and treatments.athanThe contents of this electronic mail message and any attachments are confidential, possibly privileged and intended for the addressee(s) only. Only the addressee(s) may read, disseminate, retain or otherwise use this message. If received in error, please immediately inform the sender and then delete this message without disclosing its contents to anyone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 > Then we'd have something authoritative to > show when doctors say that PSC doesn't cause pain. We could put > together a simple poll on this site easily, but what we really need is a > professionally designed and administered survey. Then maybe doctors > could spot patterns and associate them with complications and treatments. > > athan > I continually have a pain (more like a bruised feeling) about the size of my palm in my back RUQ. - if there is a pain scale of 10 it would be 1 - the 'pain' and I get along fine and it doesn't bother my much at all. I keep telling my Doctor, he says " yes it is in the liver area " but the quotes the classic words, even down here in New Zealand " PSC should not give you pain " . Had my gallbladder out, which was hoped was going to bring my LFTs down to normal...huh.... so we can't blame gallstones. I have had the pain of feeling like a very wide belt is being pulled very tight across my breastbone area when I had cholangitis infections. I have every sympathy for those who are suffering pain. best wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 I use to go to the hospital and get the fluid drained from my belly..and the nurses who preps you for it ..says some paitions have so much fluid. not just in the belly but up in the shoulders and the back area to..I know how big and hard and painful my belly would get..but after it was done i felt good the most weight i lost was 18 lbs at one time....but now they double up on my lasix's pill and i dont need to be drained.. Jeanne jeanne2113@... J wrote: > Then we'd have something authoritative to > show when doctors say that PSC doesn't cause pain. We could put > together a simple poll on this site easily, but what we really need is a > professionally designed and administered survey. Then maybe doctors > could spot patterns and associate them with complications and treatments.> > athan>I continually have a pain (more like a bruised feeling) about the size of my palm in my back RUQ. - if there is a pain scale of 10 it would be 1 - the 'pain' and I get along fine and it doesn't bother my much at all. I keep telling my Doctor, he says "yes it is in the liver area" but the quotes the classic words, even down here in New Zealand "PSC should not give you pain". Had my gallbladder out, which was hoped was going to bring my LFTs down to normal...huh.... so we can't blame gallstones.I have had the pain of feeling like a very wide belt is being pulled very tight across my breastbone area when I had cholangitis infections.I have every sympathy for those who are suffering pain.best wishes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 all for it. dee > These discussions on pain in PSC have made me think that maybe we need a > good study on pain in PSC. Then we'd have something authoritative to > show when doctors say that PSC doesn't cause pain. We could put > together a simple poll on this site easily, but what we really need is a > professionally designed and administered survey. Then maybe doctors > could spot patterns and associate them with complications and treatments. > > athan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2007 Report Share Posted October 4, 2007 Pain associated with PSC..... YES it really does exist. I am being treated by a fantastic team @ Hartford Hospital in Hartford Connecticut(GI's & Transplant team). They have ALL acknowledged my pain and discomfort, they knew it is usually in the upper right quadrant, sometimes starts in my back then moves to the front. Pain is very much like passing a stone (which we wonder if it actually is something caught in the bile duct). They have taken any of my episodes VERY seriously and have never questioned any pain I complain of. They have also told me that due to the strictures in the bile ducts, infections occur causing inflammation therefore causing pain..... hence "ANTIBIOTICS" become my savior. Anyways, for any of you out there that suffers from that dull ache under the rib cage or even sharp pains....They are real! It's NOT you.... and if accompanied by fever, chills or vomiting.....don't fool around and call your doctor!!!! If any of you would like to meet a wonderful team of doctors, they are: Hartford Transplant Associates - Dr. Hull, Dr. Mathew Brown, and Dr. Anne Lally out of Hartford Hospital, Connecticut. They also specialize in Bilary reconstruction. Live, Love, Laugh "Biette, Beth" wrote: Dr. Pratt; Massachusetts General tranplant surgeon does believe in pain with PSC and so does Dr. Nina Sax, Albany, NY gastroenterologist; however they don't advise anything for relief; that it just needs to pass. -----Original Message-----From: [mailto: ]On Behalf Of athan Sent: Thursday, October 04, 2007 3:16 PMTo: Subject: Re: Re: RUQ Pain These discussions on pain in PSC have made me think that maybe we need a good study on pain in PSC. Then we'd have something authoritative to show when doctors say that PSC doesn't cause pain. We could put together a simple poll on this site easily, but what we really need is a professionally designed and administered survey. Then maybe doctors could spot patterns and associate them with complications and treatments.athan The contents of this electronic mail message and any attachments are confidential, possibly privileged and intended for the addressee(s) only. Only the addressee(s) may read, disseminate, retain or otherwise use this message. If received in error, please immediately inform the sender and then delete this message without disclosing its contents to anyone. Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2007 Report Share Posted October 5, 2007 Here's some ammo for those whose doctors say PSC doesn't involve pain: " The most common manifestations are fatigue, pruritus, jaundice and abdominal pain; however, the increasing use of invasive cholangiography has led to diagnosing this condition in a high proportion of asymptomatic patients. " Minerva Gastroenterol Dietol. 2002 Jun;48(2):99-113. Primary sclerosing cholangitis. Alba LM, Angulo P, Lindor KD. " Clinical presentation was a cholestatic picture in 40%, right upper abdominal pain in 36%, a dysenteric syndrome in 9% and varied symptoms in 15%. " Rev Med Chil. 2005 Jul;133(7):776-80. Epub 2005 Aug 26. " Symptoms occurred in 84% of the patients, with considerable individual variations in symptom load. Symptoms were usually intermittent. " Itching only " and " pain only " were the most frequent episode features. " Hepatogastroenterology. 1999 Jan-Feb;46(25):136-41. " Most patients present with jaundice, pain, and pruritis, although an increasing number of asymptomatic patients with inflammatory bowel disease and abnormal liver function are being diagnosed. " * *Adv Surg. <javascript:AL_get(this, 'jour', 'Adv Surg.');> 1988;21:65-92. There are other articles dealing with pain in PSC, including a couple that talk about pain being more common in PSC patients with gallstones or cholangiocarcinoma. Since gallstones are treatable, and CCA is very serious and needs to be treated too, it seems that doctors should be aware that not only is pain common, but it can be an indicator of serious complications. I think many are aware... mine is, but for some reason others seem to insist that PSC doesn't involve pain. Maybe they just haven't had enough experience with PSC or haven't read up on the literature? I didn't see a single article that suggested that pain wasn't involved in PSC, so they must be assuming it for some other reason. So in conclusion, my (totally non-medical) opinion would be that pain should be acknowledged even when nothing can be done about it, and it should at least be considered (along with other factors) when making the decision to investigate for things like gallstones or CCA. athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2007 Report Share Posted October 5, 2007 > > Pain associated with PSC..... YES it really does exist. > > Hi Everyone, I haven't written in a long time because I've been too fatigued and too fuzzy brained to write. About two months ago, I started having moderate URQ pain and just slept all day, waking up only for meals and nature's call. I just accepted it as another nasty PSC development but finally I took my temperature and I had a low grade fever. I was surprised when my hep. told me I probably had bacterial cholangitis even though there were no chills or high fever. A blood test showed a very high white blood cell count. After 10 days of Flagyl and Cipro and about two more weeks of recuperation, I have my usual level of fatigue and my brain is working well enough to write this. The lesson here, don't try to assume every problem is just routine PSC. If you have a change in symptoms, check with your doc. I talked to a resident who was doing a rotation with my hep. and asked him about the source of URQ pain. He said that there is a membrane around the liver that can feel pain and it hurts if your liver becomes enlarged. Also, if there is inflammation around the liver, for example, if there is a bile duct infection, the diaphragm becomes irritated and can cause moderate or severe pain. He said that pain you feel under your shoulder blade is likely to be from an irritated diaphragm. So, if your doctor doesn't believe you are really in pain, share this information with him/her. P.S. I am very glad and grateful that everyone who had a transplant in the last few months is still alive and in the fight! Best thoughts to you all. (Sacramento) dx UC and PSC 2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2007 Report Share Posted October 7, 2007 Hi , I am so sorry you have been ill. Thanks for letting us know about your atypical experience with cholangitis. I hope you continue to feel better. Martha (MA) > > > > Pain associated with PSC..... YES it really does exist. > > > > Hi Everyone, I haven't written in a long time because I've been > too fatigued and too fuzzy brained to write. > > About two months ago, I started having moderate URQ pain and just > slept all day, waking up only for meals and nature's call. I just > accepted it as another nasty PSC development but finally I took my > temperature and I had a low grade fever. I was surprised when my hep. > told me I probably had bacterial cholangitis even though there were no > chills or high fever. A blood test showed a very high white blood cell > count. After 10 days of Flagyl and Cipro and about two more weeks of > recuperation, I have my usual level of fatigue and my brain is working > well enough to write this. The lesson here, don't try to assume every > problem is just routine PSC. If you have a change in symptoms, check > with your doc. > > I talked to a resident who was doing a rotation with my hep. and asked > him about the source of URQ pain. He said that there is a membrane > around the liver that can feel pain and it hurts if your liver becomes > enlarged. Also, if there is inflammation around the liver, for > example, if there is a bile duct infection, the diaphragm becomes > irritated and can cause moderate or severe pain. He said that pain > you feel under your shoulder blade is likely to be from an irritated > diaphragm. So, if your doctor doesn't believe you are really in pain, > share this information with him/her. > > P.S. I am very glad and grateful that everyone who had a transplant in > the last few months is still alive and in the fight! Best thoughts to > you all. > > (Sacramento) dx UC and PSC 2001 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2007 Report Share Posted October 9, 2007 ’s doctors say that all her pain is caused by her UC. But she experiences pain even when her UC isn’t flared up. And it is much like many of you have described your pain. You think if I told my doctor that all you guys say it is liver pain that he would change his mind? LOL I know, I doubt it... But I suppose it is worth the shot. In Christ's Love, Beth Hunt Mom to 9 yo PSC & UC " And he [Jesus] is the propitiation for our sins: and not for ours only, but also for the sins of the whole world. " 1 2:2 Do you eat enough veggies? There is an inexpensive way to get more Click Here! From: [mailto: ] On Behalf Of LISA MCGLOIN Sent: Thursday, October 04, 2007 6:56 PM To: Subject: RE: Re: RUQ Pain Pain associated with PSC..... YES it really does exist. I am being treated by a fantastic team @ Hartford Hospital in Hartford Connecticut(GI's & Transplant team). They have ALL acknowledged my pain and discomfort, they knew it is usually in the upper right quadrant, sometimes starts in my back then moves to the front. Pain is very much like passing a stone (which we wonder if it actually is something caught in the bile duct). They have taken any of my episodes VERY seriously and have never questioned any pain I complain of. They have also told me that due to the strictures in the bile ducts, infections occur causing inflammation therefore causing pain..... hence " ANTIBIOTICS " become my savior. Anyways, for any of you out there that suffers from that dull ache under the rib cage or even sharp pains....They are real! It's NOT you.... and if accompanied by fever, chills or vomiting.....don't fool around and call your doctor!!!! If any of you would like to meet a wonderful team of doctors, they are: Hartford Transplant Associates - Dr. Hull, Dr. Mathew Brown, and Dr. Anne Lally out of Hartford Hospital, Connecticut. They also specialize in Bilary reconstruction. Live, Love, Laugh " Biette, Beth " <mary.biette (AT) usoncology (DOT) com> wrote: Dr. Pratt; Massachusetts General tranplant surgeon does believe in pain with PSC and so does Dr. Nina Sax, Albany, NY gastroenterologist; however they don't advise anything for relief; that it just needs to pass. Re: Re: RUQ Pain These discussions on pain in PSC have made me think that maybe we need a good study on pain in PSC. Then we'd have something authoritative to show when doctors say that PSC doesn't cause pain. We could put together a simple poll on this site easily, but what we really need is a professionally designed and administered survey. Then maybe doctors could spot patterns and associate them with complications and treatments. athan size=1 width="100%" align=center> The contents of this electronic mail message and any attachments are confidential, possibly privileged and intended for the addressee(s) only. Only the addressee(s) may read, disseminate, retain or otherwise use this message. If received in error, please immediately inform the sender and then delete this message without disclosing its contents to anyone. Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos more. Quote Link to comment Share on other sites More sharing options...
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