Junior Member

Posts: 7
From: Canada
Registered: Sep 2003

posted 09-06-2003 07:39 PM            

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I have sjogrens syndrome, auto-immune disease. Have had this pain for over ten yrs. It is right under my breast bone and radiates to the back as if someone is stabbing me. It is very intense and causes me to have breathing troubvle at the time too. Also some times it is just in the back more...feels sort of cold too. Had my gallbladder out but pain was still there. Treated for hiatus hernia, gerds and ibs. Nothing seems to work. Only symptom i have is the pain. It can be intense at times so i need to go to emerg get drugs to stop it. I have all sorts of tests but no results yet. I was wondering if this might be because of my sjogrens. Does anyone else know? Please woould llike to have some input here if possible..Thanks C.J.

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Member

Posts: 51
From:BELFAST, N. Ireland UK
Registered: Sep 2003

posted 09-20-2003 05:14 PM            

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Hi
Hope you get to see this - just to say that I have quite bad SJS and would consider that type of pain you describe to be perhaps related to kidney and/or liver involvement possibly as I have the same. My SJS has taken off big time this year causing total havoc systemically - major dental issues with enlarged parotid glands and 'bloody' saliva and now organ involvement too. All good fun :-)

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Junior Member

Posts: 7
From: Canada
Registered: Sep 2003

posted 09-21-2003 12:08 PM            

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Hi Tikkiro...Thanks for the response. So you have similar pain? Thought it must be related to SJS somehow since it effects all organs at some time. I just had another ultrasound done and go to see gastrointroogist( spelling?) nov 11th. They want to do the test wheere they put tube down throat with camera...don't want that. Have you had your gall bladder out? I checked on line and there was info about this thing called odyi of spincter dysfuntion with exsct pain description. This occurs mostly in people who have had gall bladder out. I want to investigate more. Right now i have constant pain in my middle back like stabbing ...not bad but noticeable so will look into that as well. I also have bad teeth because of this. Nothing for me to have six or more cavities at time. But this last checkup had none in yr...whoopp!!I use this super flouride toothpaste...expensive but works,$12.00 a small tube..called prevident check it out ...works gret.
will close thanks again

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Senior Member

Posts: 114
From: USA
Registered: Aug 2003

posted 10-02-2003 03:08 PM            

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Hello CJ,
I have Sjogrens too. What medications did they give you in the ER? Did they ease your pain? I had similar pains. I thought I was haveing some major event with the stabbing pain in the chest it was out of the blue and happened only a few times. I also have fm and joint pains galore. It made sense. I did not know there were joints in that location. That answered the question for me.

Do a search on Costochondritis-Musculoskeletal chest pain.

[This message has been edited by Gemi (edited 10-02-2003).]

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Junior Member

Posts: 13
From:Long Island,NY
Registered: Oct 2003

posted 10-15-2003 01:40 PM            

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Hi!
I have Sjogrens, and CREST. I also get Raynauds, which becomes worse year by year. Last year I was hospitalized for three days because of severe infections on my left thumb, and right index finger. The Dr's thought I'd lose the tips, but intensive antibiotics, and with GOD'S help, the tissue regenerated. I have nipedifine to take thrice (not twice daily, which is to help circulation. Must confess during the summer I did not take them, but the days are growing cooler, and I am beginning to go back on it.
Even right now, my fingers, and hands have a purple hue, and there are tiny "boo-boos" which may become infections.
Sheesh! Can anyone else relate?

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Hannah

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Junior Member

Posts: 9
From:
Registered: Sep 2003

posted 10-16-2003 06:45 PM            

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x

[This message has been edited by desertbrat (edited 10-19-2003).]

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Junior Member

Posts: 7
From: Canada
Registered: Sep 2003

posted 10-19-2003 07:49 AM            

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Thanks Gemi for the response. In er they gave me percocet which upsets my stomach so I had to have gravol too...this made things worse somhow for me. It did ease the pain in time though. I toohave sore aching joints and my rehumetologist has tried lots of meds to help but most have aspirin in them and I am allerigic to that. So bear with the pain. I did look up costochondritis and I don't think it is right in my case. I have not had a major attack in over month now so good for that. Also I know stress is not an issue for me either as last Sunday had the most stressful day and nothing happened so all is good there too. Just want to know why and not have to worry when it might happen as when it does I just want to die then! Thanks for the input all who replied. I also wish I never had my gallbladder removed either as it did not help me it seems. Any other answers would be helpful.. thanks again
Penquinlady..

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Newbie

Posts: 1
From:Greenwood, MS USA
Registered: Oct 2003

posted 10-21-2003 05:26 AM            

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Penguinlady, I too have Sjrogen's. From my experience I would view your problem as IBS. Yes, it can be that bad and pain can radiate to the area you describe. I've had it happen and the pain is very bad. Try to keep things moving along in the bowel and see if the pain subsides. Also, I have a different take on IBS. I do not believe our (Sjrogen's related) IBS is a rhythm disturbance as gastros describe it. I believe it is a lack of lubrication of the bowel, the same type of problem that Sjrogen's suffers have with dry eyes. We seem to not be secreting enough lubrication in many areas; could also include other areas of the gastro tract like the stomach, esophagus, duodenum and even liver. Antibodies our bodies make attack these secreting glands and we dry out. The only true relief I've found to clear up my Sjrogen's is prednisone. Best to use the lowest effective dose. Hope this helps.

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Junior Member

Posts: 7
From: Canada
Registered: Sep 2003

posted 10-21-2003 06:49 AM            

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Thank you for the input. I was told I had IBS many yrs ago but this pain was not there then. I had a barium swallow done and I have problems in the esophogus area with swallowing..this is from lack of fluid i think. I choke easily so have to be careful what i eat and chew properly.Been real scared few times. I live alone so must be careful.Had to run to neighbor, a nurse for help !..very scarey. I tend to be constipated some times when stressed...no pain. Trying to keep handle on it but no luck. Had bad attack night before my colonoscopy real bad too went to er...horrible experience. Only srong meds stop pain that night was demerol. Going back to see gastro doc next month so hoping. They say next test is to put camera tube down my throat...do not want that at all. Heard bad things about that. Will look into IBS again though. One doc who did my colon test thought it might be my pancareas...as I did too especially since I had my gallbladder out yrs ago. So time will tell and I will try to keep things moving till then. Thanks again
C.J

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