Lupus or Crohn's? Still very confused.

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Adam DoubleYoo
Regular Member


Date Joined Apr 2011
Total Posts : 65
   Posted 5/17/2011 11:14 PM (GMT -6)   
this is the fifth month of playing the waiting game on finding out what is wrong with me.

It started in late december, I was tired all the time and my joints would hurt, and I would barely want to move. I wasn't able to sleep well.
Then I started getting very bad stomach pain and wasn't able to pass stool. I started having bad chest pain, especially when I breathed deeply, started getting really bad heart palpitations, and they get worse after doing anything as simple as walking up and down the stairs, it feels like a heart attack. they told me i have anxiety, which i agree with because I have had multiple panic attacks since getting sick, and am currently on medication. I have headaches every single day, they range from small headaches, to migraines that make me want to vomit and lay in a dark room all day long. I'm dizzy a lot, but this can also be from the clonazepam i take but its a very small dosage. .5mg. My back hurts, my arms, legs, chest like i said before. my skin turns red, sometimes like a rash that burns, but mostly it only burns on my face. i get that butterfly shaped redness on my face as well, and sometimes it burns at the touch. when the sun hits my arms, which are already a light red in some places, it gets hot very quickly. I have low fevers every single day no matter what at some point, anywhere from 99-100.4. I sweat all the time, I'm always hot to the point where the only way I can fall asleep is with a fan blowing on me at night. I also can';t ever fall asleep so I have to take benadryl.

a month ago my GI told me that he thought I was in the early stages of Crohn;s disease after doing CT scans, bowel Xrays, colonoscopy and endoscopy. my ileum was inflammed and so was my stomach. but he referred me to a rheumatologist so I can get tested for Lupus and other things. but in the mean time he told me that i should take two 500mg capsules of Pentasa every 6 hours. I haven;t been officially diagnosed yet. I have to go do more bloodwork tomorrow as well. I still have stomach pain, and sometimes it's like i don't digest my food completely.

Could this be Lupus? or could it just be in fact Crohn's? i just have so many questions and nobody to give me answers at the moment. Sometimes i just don;t know what to do, I haven;t been living my life for the past 5 months because of the way this illness has taken its toll on me. I feel like people aren't taking it seriously, that I'm not really in pain, or I have fevers (even though I prove it to them.) I just don't feel like I'm getting any support at all.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1912
   Posted 5/18/2011 1:28 AM (GMT -6)   
It's best to get to a rheumatologist to see the cause of the joint pain. I was having issues very similar to yours (without the headaches and panic attacks) with the joint pain. It took months of 400 mg plaquenil until I saw some results. A lot of people who do have crohn's also have joint pain. Hopefully, you will get to see a good rheumy who is understanding and will try to help you out and reduce your pain. Try staying out of the sun and see if that helps the pain any. I know it does for me. Good luck to you.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, IBS, Colon resection Nov. 2010, now in remission
inflammator arthritis, ??Overlap or mctd, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, pexeva (paxil), synthroid, cozar, advair, plaquenil
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern

Dazey88
Regular Member


Date Joined Jun 2011
Total Posts : 35
   Posted 6/15/2011 2:05 PM (GMT -6)   
Iam sorry your going through all of this- I sincerely hope you get some answers. I am going through the same thing. My symptoms are so long but I have both joint pain and some tummy issues. Right now its joint pain and I hate it! I was wondering if you have had any answers. I will keep in touch. I have had a colonoscopy and am having upper endoscopy tommorow. I aso have had some bloodwork done and I am aaiting the results. Colonoscopy came out fine. What tests have you had so far?

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 373
   Posted 6/15/2011 2:37 PM (GMT -6)   
Adam,
I have crohns and get joint pain along with it,headaches, etc..but do not have a rash on face. It hurts sometimes to even to have my skin touched, it's all part of the "autoimmune" response.
I suggest that you ask for a colonoscopy and blood work to confirm ex
Actly what you have.
I am sorry you are going through this, I know how frustrating it is, it took a long time for me to get diagnosed.
It sounds like you are listening to your body which is the first step, be proactive and ask for the tests, the doctors will not refuse you.
Good luck and keep us posted,
Lasardo
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries..

Adam DoubleYoo
Regular Member


Date Joined Apr 2011
Total Posts : 65
   Posted 6/15/2011 4:24 PM (GMT -6)   
I had a colonoscopy and an endoscopy done. My colonoscopy showed inflamation in my terminal ileum, and something about lymhpoid hyperplasia. They've run different tests at my GI and at my rheumatologist. They've tested my thyroid, cell count, liver stuff, lyme disease, lupus, and a few other things which came back negative.

I meet with my GI tomorrow for a follow up appointment, so I don't really know what's going to happen during that meeting. Other than me telling him my worsening symptoms and such.

Dazey88
Regular Member


Date Joined Jun 2011
Total Posts : 35
   Posted 6/15/2011 5:27 PM (GMT -6)   
Keep us posted!
 
I truly hope you get some answers. I know this can be hard. Hopefully your GI is willing to try more tests. My GI said that if everything came back normal that then it wasnt chrones and basicallly I need to follow up with my primary doc. Hopefully yours is a little bit more understanding.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1912
   Posted 6/15/2011 7:28 PM (GMT -6)   
Good luck tomorrow. Sometimes we get symptoms before the tests are positive. That's what they told me. Maybe they can try you on something to at least help your symptoms. Keep us posted.
d 1/09 with colitis sigmoid colon with some diverticular disease as well, IBS, Colon resection Nov. 2010, now in remission
inflammator arthritis, ??Overlap or mctd, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, prozac, synthroid, cozar, advair, plaquenil
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern 1:180, high sed rate

Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 562
   Posted 6/15/2011 8:47 PM (GMT -6)   
It sounds like you have been diagnosed with crohns. Pentasa disolves in the ilium (a med for crohns). I hope you don't have lupus also. One thing, prednisone is prescribed to help both. I have both crohns and remicade induced lupus, that is how I know that.

All the best tomorrow,

Julia
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