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  • At a loss

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    Old 03-29-2018, 10:59 AM   #1
    Mam4490
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    At a loss

    I am at a loss... I have started treatment for An Autoimmune disease. 50mg prednisone and a gastrointestinal reflux med. Iíve been to ortho, Iíve been to Vascular, Iíve been to a dermatologist, Iíve been admitted to the hospital (this past Saturday -Monday), Iíve had multiple blood panels ran in the past 7 days. I have been stuck with more needles then I can count. Iíve had IVs blow, infiltrate and cause pain. Iíve had to lay still in a MRI machine for 3 hours that within 45mins I was pushing the call button over and over because I was in so much pain. The kind of pain where it consumes, where you want to scream but canít. Iíve had x rays and MRIS come back normal. Iíve had my voice come and go. Iíve had people tell me they are worried about my mental status... including my husband. I am not crazy. I am not making this up. I know I am early in the diagnosis but I feel so discouraged. My doctors say itís autoimmune. I have to many symptoms. Thatís why they are treating me until I get in with a Rheumatologist and he decides what to do.

    Has anyone else had everything come back normal? No clues other then the physical symptoms and the obvious amount of pain I am in? I just want to feel normal. I just want to be able to get my kids dressed with out wincing and jerking out of their little hands when they grab my shoulder to steady theirselves. I donít know if you can post pics on here, if there is a way I can share some of what has been happening to me. Or describe what has been happening. Thank you to anyone who reads this and understands.... I wouldnít wish this on my worst enemy

     
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    Old 03-30-2018, 07:49 AM   #2
    North Elf
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    Re: At a loss

    I wish I had the magic words or information to help.

    I do understand your pain & frustration - real pain, fatigue, etc. with no definitive answer as to why, pain that one just can't keep ahead of, pain that nothing really works to diminish it. Going to bed at night knowing morning is going to suck just trying to get moving. Trying to plan but not knowing how the body is going to behave on any given day, how much you can do.

    Pain & frustration that no one else really understands - how could they anyway ??

    I have an immune disorder - can't make antibodies properly - that is linked to autoimmune issues (seems like an oxymoron!). Most autoimmune tests test for antibodies so my bloodwork is almost normal (some leukopenia and some anemia but nothing off the charts on the big autoimmune tests like ANA, etc.). The pain is real, the fatigue is real, gut issues, dry eyes, etc. etc.

    All we can do is keep plugging along. Rest, eat well, find a way to sleep well...ugh.

     
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