I had a multi-day work up at a major institution and they found my pancreas deficient with an EUS with PFT. Saw multiple other team doctors and the Rhuemetology area locked into symptoms I've had for years. Had a positive lip biopsy and a positive ANA blood test which points at sjogren's. Various departments agreed for sjogren's attacks exocrine gland function, and half the pancreas' job is exocrine function with the other half being endocrine. On pancreatic enzymes and placquenil and seems to have stabilized and at times are back in the right direction. Battled the abdominal pain, weight loss and malabsorbtion for over a year before May of this year when was diagnosed. There are a couple sjogren's handbooks which have chapters on the GI tract being impacted and specifically the pancreas.

Do you know the names of the booklets? I have was diagnosed three years ago with Sjogrens but thought the Doc was nuts because I felt fine. Two weeks ago was diagnosed with Lupus, Sjrogrens and connective tissue disorder. I have terrible GI track issues and pain in the liver area. Have had every scan and blood test known to man and the say my liver is normal. I've often wondered if it was my pancreas. I can't get into the Rheumy till Feb. I already see a pain management doc so my pain is under control. Just don't know what is really going on! That really bothers me!

Thanks gill1234, yes, I really need to join the SS foundation, is that where you're getting the handbooks? I've been to the library, and there are quite a few books available on SS. I just didn't have time to read all the ones I took out, so I may just go ahead and buy them- they're reasonably priced on amazon.com. I saw quite a few.
I was told to take some OTC (over the counter) enzymes, that are $50 for 90 capsules by one GI, but another one told me "do not take any enzymes not approved my the FDA". (!?) I take them every once in a while, but as I said before every GI I've had doesn't really know a whole lot about pancreatitis, I guess b/c it's quite rare.

Lee Ellen, pancreatitis is an extrememly painful condition, you would know if you had it, b/c it's unbearable. The pancreas gets inflamed, and the pain in my case was the entire abdomen, with more pain that radiates to the back..I could barely walk. At the ER my blood tests came back with elevated Lipase and Amylase, which are enzymes that leaked out of the pancreas. The pain has been compared to being worse than labor pains. But it lasts a few days, and usually the pain levels go down.The problem is that the pancreas is usually damaged by then, and cannot be repaired. So you must stay on a low fat diet for life...no beef, pork, sugar, pastries, nothiing fried, etc...the list goes on. It's a life changing event for sure, and hopefully it won't become chronic, which means it will slowly necroticize,(decay) and that's real bad. Sorry for the unpleasant details, but just wanted to let you know what it is... I sure haope and pray you never get it. Its good that you have pain mgmt.,that's a real plus for you. I would try to stay on a low fat diet, just to be on the safe side. Best of luck to you both. :)

Take Care...=)

Thanks so much for the advice. My pain is mainly in my back right side just under the rib cage. If I rub between my ribs, it hurts so bad. I dont have abdoman pain though, really just localized just under the rib cage near the liver. But it hurts so bad sometimes I can't take a deep breath. It does ease but it's always there. I also get cramps in my back when I move the wrong way. havent see any talk of cramping but i get terrible leg, feet, neck and back cramps. I got a hamstring cramp the other day when I was holding my staff meeting and I jumped up because it was so painful and I could not get it to release. Talk about embarrassing. It took 20 minutes for it to completely stop where I could straighten my leg. then My muscle was sore for a week like when you work out. Anyone ever have muscle cramps?

babie222 - nice overview on pancreatitis you described the pain to exactly. A number of major cities have hospitals with experts in the pancreas. Chicago, New York, Cleveland. Low fat is the way to go to battle GI issues and sjogren's
The New Sjogren's Handbook by Dr. Carsons is an easy read. Take care.

Thanks, I've heard that too, regarding pancreas specialists. However, I think it was Minneapolis that's actually the very best with the pancreas issues, but I'm in FL and can't afford the travel costs right now. As for the book - I'll look for it, thanks. :)
LeeEllen, I sometimes get cramps, but not very often. As for your pain, I would more inclined to think you may have gallbladder problems, considering it's a constant pain, and the location. Perhaps you could get an ultrasound of the GB? Sorry about the cramping, that sounds awful too. I would think a mild muscle relaxer might help with those cramps...at least it's worth a try. Good luck. Take care. :)

Thanks Barbie, but that's the thing. I had my Gallbladder out when I was 23. It ruptured. I was very very sick. It feels a lot like that pain thought. Liver tests are normal. But the pain is very real. Maybe the Lupus has chosen that area to be angry with. Who knows!

LeeEllen, I didn't realize you had your GB already taken out...but I would still be concerned about constant pain...and your bloodwork is normal, which is a very good sign. I'm wondering if they did a liver profile, or a cbc? But pancreatitis will definitley show up on bloodwork. Do you ever get nausea, vomittng, or diarrhea from the pain your having? Just thought I'd ask, as those are sure signs of trouble, of course. I would think if it continues, to see a GI, and get another opinion. It's horrible being sick, seems like if it's not one thing, it's another. Best of luck to you dear. :)

I have constant pain in same areas and have just found out I have ulcerative colitis and mild diverticulitis. I had 2 colonoscopies and 2 endoscopes with every other test..too many to mention about 4 years ago and nothing was found. I was then told I have sjogrens and I just thought it was connected. I was talked into another colonoscopy and the ulcers were quite apparent this time. I am going to ask about my pancreas when I see doc next week.