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09-16-2011, 12:53 AM   #1
Blackrose
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Join Date: Sep 2011
Location: Fort Benning, Georgia
Just not sure.

Hello! I'm a 24YO mother of 2. My story is odd. Several months ago I started having pain in my left shoulder, at first I ignored it thinking I had irritated an old injury from a year prior when I tore my rotater cuff. Then the pain spread to my right shoulder, then my hips. I went to the Dr (about 3 weeks later) once it got to the point where I couldn't stand it any longer he wrote me a script for 50mg Prednisone once a day for 5 days. It didn't do anything but keep me up for 5 days. 7 days after that appointment I went for a walk with my family and afterwards my husband noticed a rash on the back of my right leg/foot. Over the next 2 days it spread to both legs and feet and both my arms and hands and my neck behind my ears. It did not itch! I went back to the Dr. and he gave me another script for the Prednisone 50mg once a day for 5 days. This time the joint pain stopped and the rash went away (after about 3 days). I was referred to a rhuematologist who spoke almost no English and diagnosed me with "arthralgia" (allergy induced arthritis, a symptom not a diagnosis) So my Dr. sent me to an Allergist who told me I was wasting his time and mine because I didn't have allergies. Dr. then decided to get a second opinion and referred me out of town to another Rhuematologist. I waited 4 1/2 months for my appointment and it was worth it! In that time several new symptoms came up and I also realized that something I thought of as "normal" really wasn't.

So far my current symptoms are : Severe joint pain, nausea, dizziness, vomiting, diarrhea, stomach pain and cramping, fatigue, My hands swell so bad that I can't wear my wedding ring, My feet get so swollen that I can't wear my tennis shoes, (Thank god my work boots have zippers on the side!) I often walk on my toes when at home because my heals almost always are swollen and hurting.

ALL my labs so far have been normal.

Until a few days ago I never thought of the nausea and diarrhea as a symptom. All this time I thought it was just the joint pain. I guess I have had it for so long it was "normal" to me. I often wake up in the middle of the night in severe pain with diarrhea. During the day if I have to go to the bathroom and try to hold it I get nauseous and break out in a cold sweat and have severe stomach pains. I guess I thought everyone had painful cramps when they went to the bathroom.

Recently my husband bought me a new car, my sister asked me to send her pictures and one of them was of my center console....She texted me back saying "LOL Imodium!" I keep a box of Imodium with me everywhere I go. Looking back now I realize there hasn't been anything "normal" about my bowel movements in several years.

My Rhuematologist diagnosed me with Undifferentiated Spondyloarthropothy, She then told me I needed to contact my GP and start getting tested for Crohn's. She Agreed that adding the "new" symptoms very much sounded like I could have either Crohn's or UC.

Has anyone else experienced any of these symptoms? Does it sound like Crohn's or UC to any of you? I'm not looking forward to the tests but I am looking forward to some answers!

Currently taking Prednisone (21 day cycle), and Ultram (As needed)

Please excuse and spelling errors It's late
09-16-2011, 04:38 AM   #2
beth
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Join Date: Mar 2009
Location: United Kingdom

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Not personally but it's in a lot of medical stuff that in people presenting with multiple arthralgia a certain percentage (cant remember but it was a lot to be able to stick in my mind) will also have some form of IBD (Inflammatory Bowel Disease).

So your story is not a surprise. You need to see a gastroenterologist.
09-16-2011, 04:57 AM   #3
Dexky
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Join Date: May 2010
Location: Kentucky

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Welcome to the forum Blackrose! We have an entire sub-forum for EIM's (extra-intestinal manifestations) here....http://www.crohnsforum.com/forumdisplay.php?f=81

I think you'll find you're not alone with most of your symptoms. Good luck!
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09-16-2011, 03:44 PM   #4
Cat-a-Tonic
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Hi Blackrose, welcome to the forum and the club. Your symptoms certainly sound like it could be an IBD, and I agree with Beth - you need to see a gastroenterologist. Your GP should be able to refer you. You've said all your labs have come back normal so far - what tests have you had? Have you had anything besides blood work? Any scans or scopes?
09-16-2011, 04:09 PM   #5
soretum
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Join Date: May 2011
hi there,

I was diagnosed with Chrons about 3 months ago, now waiting for an MRI to confirm if I have ankalosing spondylitis...have had symptoms of AS for at least 10 years on reflection but never put them together before, also never thought to go to a doctor about it, duh! All your symptoms sound like my chrons and AS symptoms put together, definitly grt youself to a GI and get checked out
09-16-2011, 05:31 PM   #6
Blackrose
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Join Date: Sep 2011
Location: Fort Benning, Georgia
Thank you everyone. I've had several blood tests and so far they were all normal. My Rhuematologist ordered about 20 labs on me yesterday so maybe she will find something my GP didn't. She also did an x-ray of my sacroliliac and said there was obvious swelling on my left side which is the side of my body I seem to be having a flair on right now. My shoulder, hip and knee joints are swollen and painful, and most of my abdominal pain is predominantly on my left side. Every flair is different sometimes its both sides other times it is one or the other. I have an appointment with my GP next Wednesday, (soonest I could get in) I'm going to ask for a referral to a gastroenterologist. I think in some ways I delayed my own care by not telling my doctors about the diarrhea.
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