Does anyone get this? First, I get tight jaw muscles for a while. Then they become very weak and my jaw is misaligned. jaw joint with tmj becomes very painful due to weak muscles, which I know are not fully contracting. I can get my jaw to feel normal briefly with a tens unit, so clearly nerves and muscles are not working fully.
So I’m tapering steroids. My blood fllow, abdominal cramping/motility, brainfog, bizarre nervous system overreacting with dry eyes and mouth … all are getting worse. Has prednisone been effective for anyone treating autonomic dysfunction? How quickly has it worked, and how do you really know??
🙁🙁It’s too long of a story to explain... but I took 60mg prednisone one day, then dropped down to 20. After about a week, everything went downhill fast. Digestion and nervous system so bad that eyes dry up from drinking liquids. Barely have bowel function at all. It’s been really bad for months, but now worse. I think things were better for a few days at first, but not for sure. Can a taper or a dose too small cause such a quick change, or is my body reacting to the prednisone. Its been a month now, and I am down to 12.5 mg and cannot function, no energy, muscle loss and spasms. I know for sure I have rapid stomach, autonomic issues, and pelvic floor dysfunction, and nerve damage that affect bowel evacuation, and slow bowel motility. no real diagnosis
Does sjogrens cause muscles to not contract fully or stop fully functioning and cause weakness? I really think I’m dealing with sjogrens but unsure. I know have severe intestinal motility issues and pelvic floor nerve/muscle issue. Just no diagnosis yet.
***Can someone please explain exactly how Sjogrens affects your muscles and nerves. I have lost so much muscle in pelvic, lower, and upper abdomen. I have pelvic prolapses and confirmed muscles with mri that are not responding in pelvis area. I am really feeling like the upper abdomen is the same. it is very tight and burning. I sometimes feel like I have to hold up my abdominal organs… or I could be experiending trapped gas due to severe pelvic . dysfunction, prolapses, and motility... or both. I don’t know. I just know that drinking liquids makes my eyes dry out immediately, which I guess is nerve system related. Don’t know where to go for help or to try to treat myself with higher steroids.. but I already have small muscles. Been to 5 rheumatologists.***
Has anyone ever come out of very severe neurological flare w/o meds? Just want to know. Not diagnosed at this point.
i think I have severe pudenal nerve damage. I know that I have muscles in pelvis that are not contracting. I think it is beginning to affect my thighs as well. I think I have similar muscle/nerve issues in other places. Can this be caused by Sjogrens? Anyone else have muscles not contracting?
I have rapid stomach emptying with severe cramping. When I eat or even drink, my eyes immediately dry out. Has anyone experienced this?
undiagnosed and doctors don’t know. Just did IVIG. Took moderate dose of prednisone and now tapering. have rapid stomach, so not sure how much is absorbing. can barely get out of bed and function at this point. everything started with severe pelvic and autonomic dysfunction with no sweating tingling numbness and blood flow issues. recent MRI confirms that pelvic floor muscles are not working. I have got to figure out what this is before It kills me. if any of this sounds familiar, I am desperately looking for anyone that may be willing to discuss In more detail by phone.