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nanke99
@nanke99

Posts: 34
Joined: Aug 09, 2016

Organ pain from auto immune?

Posted by @nanke99, Oct 9, 2016

Ok so I’ve been having upper right quadrant abdomen pain for 1 1/2 years now! I’ve had a sonogram, an upper GI series and a HIDA scan with contrast- showed nothing. It is definitely in the liver/kidney area, and clearly feels like kidney pain (back) often. My blood work is otherwise normal, excepting the SED and CRP’s which have gone down slightly since i have been medicated.
So can Fibro cause organ pain???? Inflammation? My Rheum doesn’t seem to think so but I have seen that online. My Gastro doc isn’t sure either.
Anyone heard of such a thing?

Liked by boxermomma

REPLY

That is a difficult question for the community to answer Nanke. I’m tagging fellow Connect members @vickiekay @blindeyepug @leslon @undiagnosed_pain @mom2zacknwill @clubohara and @suzz. Have any of you experienced abdominal pain in the liver/kidney area associated with fibromyalgia?

Nanke, what makes you think it might be due to fibro-related inflammation?

thanks! Well, considering nothing has been showing up in the various tests that I’ve had, it seems a like a possibility….?
I have seen organ inflammation listed on many website as a result of auto immune diseases.
Is this not true?

I also have been having pain in that area. Not sure where it is coming from. I have been having a lot of ear infections and uti’s. My GI says that fibrosis can cause the pain. Any information out there would help us both.

I had upper quadrant pain for the last 9 months. Dc’d Celebrex, took Prilosec and Pepcid, added probiotic, etc. PC doctor said IBS, but symptoms didn’t fit. Finally sent me to a surgeon for an upper endoscopy. Surgeon said that he wanted a colonoscopy, too. Clean so he ordered an upper GI and pelvic CT. Insurance wouldn’t pay for the pelvic CT, so he ordered an ultrasound. Surprise, I had large cysts in each ovary, which were not there a year ago by palpitation. Surgically removed two weeks ago, I am now stomachache free. Who would have thought!

@mollyb1968, @kreed13
thank you for your responses! i am due to have a pelvic CT also, so if anything comes of that i will let you know. oddly, at my most recent obgyn visit, with a new doc, she did not do much palpitation at all.. i was wondering if this is a new trend with younger doctors? we’ll see… i am still interested in hearing from others. thanks!

I just had an ammonia level done and it was slightly elevated. I also just had a uti and the nurse told me I had high protein and nitrates in my urine. Would that cause my ammonia level to be slightly elevated.

I’ve had traces of protein in my urine for years and the doctors don’t know why. They’ve supposedly checked everything and still can’t explain it. I consistently have protein in my urine any time I have a urinalysis.

Have you been checked for Sjogren’s? It can cause stomach pain. I have RA, Sjogren’s and Fibro. They usually come in pairs or groups.

Blindeyepug- If I could ask you a question about your pain, I was diagnosed with Agent Orange Chemicals in my body and my immune system- is your pain all over or is it one place, I know my stomach has not been the same since I was diagnosed, I can’t taste anything -or can I eat more than a few bites.- my tongue burns and my tissue inside my mouth hurts when I eat, I know that sounds crazy- but its the truth and the Agent Orange Doctor here at the VA that gave me a very exam, told me my mouth would be that way for now on and there was nothing they could do- also the Immune system will be weaken’ and I will be really open to pneumonia( I have been in the hospital since then with double pneumonia -for a week) came home and had a relape three days later and again 4 weeks later- that just a couple issues. Thanks for your time. JJames

Hi johnjames. I get blisters in my mouth on and off, but was told it is from my Sjogren’s. (I had a lip biopsy to positively diagnose the same.) I have specific areas of pain in my stomach, especially to the lower right of my belly button. Even if I press on it, it hurts. Have been told it is my Sjogren’s. I have sluggish bowel due to the Sjogren’s. I am on medication for all my chronic conditions, but still have flares. So, so sorry to hear of your condition and also having double pneumonia episodes! Having chronic conditions is a pain in the you-know-what. I find swimming and/or walking – trying to keep moving – helps some with my problems. I know if I am still too many days in a row, everything just gets worse and worse. It is a long climb back from the slide downward. I promised myself I would never get to that point again. So far, so good for years now. I have not been as bad as I was in the very beginning. I also try to stay positive. I will keep you in my prayers, John. I hope this is of help to you.

Liked by boxermomma

I have Sjogrens Syndrom and i never heard of this causing organ pain. I also have upper right quadrant pain. My gastro dr told me its due to my cryptogenic cirrhosis and my GERD. If you find out anything new, please keep us informed.

What does cryptogenic mean? Also, do you have elevated ammonia levels. Mine are only slightly elevated but I am concerned. Thank you for your help.

Hey mollyb 1968
Cryptogenic means they are unsure what exactly caused my cirrhosis. I have never been told about my ammonia levels being elevated but my LFTs are always elevated and my platelettes(spelling) have been running low. I hope this explained better.

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