New here and frustrated :-(

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Kirby223
New Member


Date Joined Apr 2014
Total Posts : 3
   Posted 4/16/2014 7:43 PM (GMT -6)   
I am new here and I am sure experiencing the same thing that everyone else has. I have yet to be confirmed positive for lupus but I have had many signs for almost 2 years. My life health wise has become unbearable. I am in constant pain, it mainly started with my stomach, I stopped having periods and my hair fell out occasionally, I have horrible sores in my nose. I feel like I am falling apart. EVERY SINGLE morning I wake up feeling like I am dying, my body feels toxic and I lay there for an hour before I am able to get up at all. I finally got insurance this year thank goodness and am now going full force looking for an answer. I was unable to work in the beginning, lost 15 pounds in 3 weeks only to gain it back then some. The symptoms seem endless but like I said it started and continues with stomach pain as the main issue that keeps me from being able to function normally. I had a positive ANA test, I have a spot on my kidney, an enlarged liver, a Histone ab level of 1.3, horrible nose sores, low grade constant fever, joint pain on and off, eosinophils are double the highest level (whatever that means - if anything??). I am 45 years old, prior to this, VERY healthy, very active - worked out all the time, almost daily, eat really healthy, juice daily, do not drink, never smoked. Just one day 10/02/12 out of the blue I woke in the morning in terrible stomach pain. My life has never been the same since. I am on oxy all day long and it doesn't help much, was given morphine in the ER the other day and it didn't help much - I do not enjoy meds. This has changed my life, I try to be positive for myself and for my family but it's so hard. I feel like a hypochondriac but my pain and symptoms are so real. I know that all of my symptoms may not be related. Anyway, thanks for reading I am just so frustrated :-) Finally referred to rheumatology today after the Histone AB result.

Kirby223
New Member


Date Joined Apr 2014
Total Posts : 3
   Posted 4/16/2014 7:48 PM (GMT -6)   
Oh I forgot a few, can never take a deep breath, my rib cage when touched, feels like someone hit me with a baseball bat and often times I have irregular heart beat. Probably more..............

Kirby223
New Member


Date Joined Apr 2014
Total Posts : 3
   Posted 4/16/2014 7:51 PM (GMT -6)   
Sorry - I will figure this posting thing out - the thing that has me really frustrated is that the doctor wants to proceed with a colonoscopy, I don't feel it has anything to do with anything and my stomach pain has never caused any symptoms that would indicate a colonoscopy is needed but since I started with GI she wants to rule out all GI issues which I wouldn't think is a terrible idea but now given the new information of the test results and the fact that the prep will most likely cause me a great deal of pain AND the fact that for an endoscopy last month they had to give me more anesthesia because it didn't work and I sat and stared at a wall for 4 days crying I got so depressed after - just not looking forward to all that again - that being said, the GI doctor has been amazing and has been the one to get me to this point anyway with rheumatology referral

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 4/16/2014 9:45 PM (GMT -6)   
Hi Kirby223 and welcome!

It is a good thing you have a referral to a rheumy. They are the ones who can diagnose autoimmune diseases. I am crossing my fingers for you that you will get a good one and some answers soon.

I'm sorry to hear that you are going through all this. It's a nightmare and it does change our lives but there are silver linings. There will be relief. There will be answers. It just takes some time and some adjusting.

Your GI doc sounds like one of the good ones. As much as it is not a enjoyable experience it will be one thing you can cross off the list hopefully. Do you have a good support network? It's ok to lean on your friends and family when you need them. You can lean on us too. There are an invaluable amount of caring individuals on this forum with endless experience in these matters.

I don't like all the drugs either. I've been getting some positive results from acupuncture as far as pain relief goes. It's not for everyone and can get expensive but it's really helping me.

The important thing to do is take care of yourself right now. Try to find ways to alleviate your stress, keep eating healthy, rest whenever possible and make time for the things you enjoy most when you feel up to it. Prioritize what must be done in the day and let the other stuff wait.

Vent, share and question all you need to!

Sending a gentle hug :)
UCTD , livedo reticularis, Raynauds, cold urticaria, endometriosis, bursitis, arthritis, Sjorgens, anemia, leukocytosis, vasculitis, pleurisy, asthma and all that fun stuff!

Plaquenil, celebrex, advair, flovent, dovobet, vitamin A,B,C,D,E fghijklmnop ;)

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss
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