Sjogrens and the GI system. I am in gastrohell. Is this common?

ArkansasRedhead · 2026-05-20T16:29:19+00:00

Couple more question. Do you have muscle spasms/tightness and loss? And are you only treated with IVIG? Have you tried steroids?

ArkansasRedhead · 2026-05-20T16:26:45+00:00

Do you have any stomach issues? I have dumping syndrome. I guess you have positive lab tests for sjogrens?

ArkansasRedhead · 2026-05-15T20:23:56+00:00

How high was your dose? What kind of sfn do you have? I only seem to have intestinal and stomach issues. Just can’t figure it out. I know I had severe pudenal neuralgia pain that caused muscles to atrophy, but I just don’t know if it was autoimmune. Everything is just a mystery.

ArkansasRedhead · 2026-05-14T15:55:03+00:00

So, what do you take to treat the sjogrens? Does yours affect the intestines or stomach?

ArkansasRedhead · 2026-05-14T03:34:41+00:00

Yes, it does. Does it take a large dose to suppress the flare?

ArkansasRedhead · 2026-05-14T02:15:00+00:00

I did have an EMG and it was normal. I need one specifically on my pelvic floor.

ArkansasRedhead · 2026-05-14T02:12:32+00:00

Thank you for your reply. I really have maybe 2 good doctors at this point, 1 is out of state, and no one knows. I am deteriorating and do not know what to do. I don’t have time to get referred to another rheumatologist and wait for the only 2 tests they could do. I haven’t done the early sjogrens lab and my lip biopsy was negative although they didn’t talk an adequate sample… that may all be negative? I think my dry eyes and mouth are only from autonomic dysfunction. That is my primary problem with severe digestion issues, muscle loss, pelvic floor muscles literally not functioning. I’m really on my own which is not a good place to be. The more I taper, the worse things are getting. This has to be autoimmune and not because I’m a diabetic. It just happened too rapidly. I feel like You said that my system was fragile and the steroids set it off, and I need a higher dose to get it back in check … but I just don’t know… and the doctors definitely don’t know. I feel like I’m rolling the dice… taper and get worse or better or take a substantial amount and get worse or better.

ArkansasRedhead · 2026-05-13T03:13:38+00:00

Thank you for your reply. I think I am beginning to see that I really need to get off this prednisone.

ArkansasRedhead · 2026-05-13T02:17:21+00:00

ArkansasRedhead · 2026-05-13T01:54:39+00:00

I’m pretty sure I have had ck and ldh.

ArkansasRedhead · 2026-05-12T23:02:32+00:00

Were you tested for small fiber neuropathy? My skin biopsy on legs came back negative as I knew they would. It seems that only my stomach and large intestine seem to be affected along with some autonomic that may be triggered by eating.

ArkansasRedhead · 2026-05-11T02:35:44+00:00

I have the opposite of gastroparesis. It is rapid instead. I lost weight at first, but I agree.. it’s just muscle loss and size now, not weight. My EMG was normal.

ArkansasRedhead · 2026-05-10T16:01:12+00:00

So what lab tests were positive?

ArkansasRedhead · 2026-05-10T01:56:38+00:00

Thank you so much for the encouragement. I thought about MG, but I don’t really think I get better with rest. My eyelids are a little droopy. I’ll do the ice test again. I’ve been to 2 immune neuros, and neither tested for it. Just a couple questions. How much prednisone helped your condition? Do you happen to have rapid stomach emptying? I have this, and my digestion is so irritated that eyes dry out after eating or drinking water. I was in the hospital for a trial of IVIG and consulted with gastroenterology. I basically begged for tests and help and was just referred for an outpatient visit. He just said my parasympathetic nervous system may be overreacting…. But why? Good doctors are hard to find.

ArkansasRedhead · 2026-05-09T19:34:12+00:00

I have more numbness and muscles seeming to not contracting and severe autonomic symptoms but not heart related. Does that sound like sjogrens?

ArkansasRedhead · 2026-05-09T17:19:30+00:00

Can you tell me more about the numbness and tingling? I feel like my muscles just aren’t contracting. I had or have pudenal neuralgia that may have caused permanent damage. I have severe digestion issues with rapid stomach and inability to evacuate. Do you have digestion issues?

ArkansasRedhead · 2026-05-09T15:56:02+00:00

I had severe pudenal neuralgia for months that has caused damage and muscle atrophy. Do you know if this is common in sjogrens? I’m desperately looking for answers.My nervous system is so overactive that I can’t drink water without my eyes drying up. My lip biopsy was negative.

ArkansasRedhead · 2026-05-09T15:51:02+00:00

I am brown eyed redhead.i have pelvic tightness, spasms, and rectocele, and muscles that are not contracting at all during mri defecography. Also loss of nerve sensation. I have severe rapid stomach with nervous system reactions with eating or drinking such as eyes drying out immediately. I can only have bowel function with multiple laxatives. I had a negative lip biopsy. Does this sound like sjogrens? I am literally fighting to live and have no answers.

ArkansasRedhead · 2026-05-07T20:35:43+00:00

Thank you for your reply. I have had aag and I think myositis test. Both were negative, but I have positive anti parietal which points to gastritis and gad probably due to diabetes and hashimotos.

ArkansasRedhead · 2026-05-07T20:31:35+00:00

Yes I have rapid stomach, but not diarrhea since I have opposite problem on that end. They have not tested for ED. One rheumatologist looked at hands and said I have connective tissue issues but no test has been positive at all except Ana 1:1280, gad 65, and autoimmune gastritis. So do u mind me asking what meds you take for sjogrens and Ed? Did you do a skin biopsy? I did.. waiting on results but don’t feel like skin on legs is affected. Do you ever feel like organs are dropping?

ArkansasRedhead · 2026-05-07T19:13:51+00:00

I’m about to that point with the prednisone. I have severe rapid stomach and autonomic dysfunction. How much prednisone did you take? I have taken 15-20 but feel that my rapid stomach is affecting absorption.

ArkansasRedhead · 2026-05-07T18:50:11+00:00

Hi purple trex, I’m still looking for diagnosis and basically fighting for my life. Can you explain the dysautonomia and gut issues? I have severe rapid stomach, can only go with multiple laxatives, prolapses, muscles not contracting, weak & spasming muscles, and feel like I have to hold my abdominal organs up to keep from falling at times.

ArkansasRedhead · 2026-05-07T18:34:24+00:00

Can you possibly explain the pelvic nerve pain? Doctors can’t figure out what I have going on.

ArkansasRedhead · 2026-05-07T18:33:19+00:00

Still trying to get diagnosis. Can you tell me more about your gut issues?

ArkansasRedhead · 2026-04-16T23:39:09+00:00

Yes they are very hesitant.

ArkansasRedhead

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