Newly Diagnosed

I came across this site doing some research on Lupus. I have been diagnosed with Lupus and I am kind of in a whirlwind. This whole journey started with a severely distended stomach (and bloating) and constipation. The symptoms have gotten progressively worse like fatigue, pin prickly sensations all over my body, finger swelling, severe fatigue, anemia, leg burning, GI problems, nausea, etc. But the distended stomach has gotten progressively worse. I am a lot of pain around rib cages on both sides, flanks, and mid back. I am really have difficulty dealing with it. My bloodwork came back with high creatine at 1.1 (Normal .5-.9) Carbon Dioxide high 31 (Normal 21-29) and the eGFR 53.9 (Stage 3 Kidney Disease 30-60). But when my Doctor reviewed them she said my Kidneys were fine. I questioned her as it related to my abdominal. I asked why is my abdominal like this? She responded it was the Lupus. I asked her if there way a way drain me or relief the pressure and pain as I am not eating food and just sipping on gatorade (for a few weeks) she responded with Nexium and told me to be safe she would order a CT Scan. I don't understand what she meant by "the abdominal distention is the Lupus". I see the Rheumatologist on Dec. 18th. I am hoping to be able to hold out that long. I just keep expanding.:(

I am also newly diagnosed and I was diagnosed with Fibromyalgia in June. I take acidophilus tablets and have noticed a dramatic change with bloating, distention, and bowl issues which are all related to Lupus. Feel better and write your questions for your Rheumy down.

Probiotics have helped me quite a bit with the abdominal pain and bloating. I have IBS in addition to lupus so my abdomen was tied in knots until I started taking probiotics. I get mine from a health food store. They are kind of expensive but so worth it.

Stop eating wheat products. Wheat is in everything and it is difficult but not impossible. Look up Gluten free foods. It makes a big difference with me.

Thanks for the responses. I really appreciate all the help.

I take multi-enzyme digestive pills 3 times a day and when I eat (right now I am NIL until this starts to resolve) I am super strict (eat something everyday) and there is no gluten in it at all. I am a bodybuilder so I eat clean and lots of protein (chicken and fish) this may be the problem.

(My diet consists of cream of rice, egg whites, chicken, jasmine rice, cod, salad (lettuce and lemon juice) and protein isolate shakes. )

Right now, I am sipping G2 (Gatorade 2) and eating a handful of saltines to keep the distention down and the flare down. I also came off all my supplements until I have my first appointment with the Rheumy.

the probiotic should help it, you might consider seeing a gastroenterologist as well. you will come to find out the doctors will blame everything on your lupus, you have to be outspoken and advocate for more precise answers, hope you get to feeling better soon.

I’ll try the probiotic. I started with the gastrointestinal when I started flaring up months ago as I lost my large intestines in 2012 due to colonic inertia. I figured I was getting constipated again and he ran bloodwork and did an upper GI with small bowel follow through for motility. Said not gastrointestinal related and dent me back to GP. All I got out of that was I am anemic and have low lymphocyte count. I thought about calling GI back and letting him know my diagnosis and seeing if he will see me. My first the my appt is Dec.18th.

Hi Heather…you will learn a wealth of information here! Something causes the bloating and saying its just the lupus is kind of a lazy answer. I have had that belly problem but don’t any longer…sure, nexium can help if your tummy is upset from the meds…but in my experience, the bloating was caused by Candida in my gut, a simple blood test will let you know and anti fungal meds like fluconozole will help. Also…after i had a colonoscopy several months ago, my doc prescribed me Linzess for constipation…now that I remain cleaned out, my tummy doesn’t pooch out so badly.

Take the ideas you get here…to your doc…some don’t like it when patients take charge of their care, but you have to start by making suggestions to them.

Thank you. I am learning very quickly and I love this site. I am compiling a list of questions for the Rheumy.

I attached a pic of my abdomen from a week ago. It is constantly expanding. I really think it is fluid at this point, although I could be wrong.

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