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  • I do not feel well - Why are autoimmune issues such a mystery?

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    Old 01-05-2017, 11:34 AM   #1
    wishiwerewell
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    I do not feel well - Why are autoimmune issues such a mystery?

    Why is the autoimmune system such a mystery? We have more knowledge of our solar system than we have about the autoimmune system, or so it seems. Am I right?!

    I am 48-years-old and I feel decades older. For the past eight years since a major surgery I have been collecting symptoms and medications as if it were a hobby. If I could, Iíd trade this hobby in for stamp collecting. I donít give a squat about stamps, but Iíll learn to love them if I could be well.

    I have a history of autoimmune issues, but none have ever really incapacitated me the way I am now. At 20 I was diagnosed with Gravesí Disease (goiter and all), had that reversed with radioactive iodide which resulted in low functioning thyroid. I am on Armour meds for that and itís well controlled.

    Endometriosis was another issue. It was painful, but since doctors werenít concerned and I didnít want to be a nuisance about my pain and fatigue, I learned to cope. That was from my early 20s til Ė at 40 Ė I found a doctor who took me seriously and who had some empathy. I opted for a full hysterectomy. During the surgery, doc found the endometriosis had cemented all my internal organs. She called in a gastroenterologist to assist with scraping it off my colon. I got a new diagnosis soon after the surgery of Ulcerative Colitis and Diverticulitis and those are being managed well with medication.

    Since then, even though the surgery was successful, Iíve been feeling awful: Fatigue, fevers, odd rashes that come and go, mouth sores, cold sores, flu-like symptoms, brain fog, joint pain, muscle weakness, nausea, migraines, arthritis, skin tenderness and sensitivity...

    But there is nothing wrong with me, say the tests. Do you ever feel like a hypochondriac? I do. I feel like Iím going crazy.

    A rheumy put me on Plaquenil a few years ago and that has alleviated the fevers and weird monthly flu-like symptoms I used to get. Recently my GI and rheumy put me on Methotrexate to help with some of the joint pain which often comes with UC (IBD associated arthritis) and that has relieved some of that pain.

    A couple of weeks ago, I remember it was a Friday, I had a really good day. It was a revelation to me. I was at work (part time admin assistant in financial firm) and my mind was clear. I was going from task to task and thinking through issues with ease, I wasnít grunting with pain when getting up or sitting down, I could go through the over-stuffed filing cabinets without stiffness in my hands, and I wasnít getting tired Ė I was alert, all day long. It was amazing. That is what I want, every day.

    Iím glad to have found this community. I donít really have any questions . . . well, except, why donít we know more? Thanks for listening. I am open to more insight.

     
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    Old 01-05-2017, 12:01 PM   #2
    ladybud
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    Re: I do not feel well - Why are autoimmune issues such a mystery?

    I too have autoimmune diseases (lupus and rheumatoid arthritis), and have often felt like you do. It is very trying to not feel well most of the time, and have unpredictable symptoms come and go on their own accord. The immune system is so incredibly complex, which translates to complex diseases. These can occur in multiples, like yours have. The underlying mechanism is that our immune systems are supposed to know our own cells from foreign cells, like germs, and leave our own cells alone. In auto (self) immunity, that recognition process is haywire, and any tissue is apt to get attacked by antibodies, leaving inflammation and cell destruction behind. Many of the disease symptoms overlap, making diagnosis difficult at times. I would be sure with your current set of symptoms that you are tested thoroughly for lupus, so you can benefit most from treatment. Placquenil and MTX are both used for lupus as well as other conditions. A skin biopsy of rashes can be helpful as long as immunofluorescent studies are done on the tissue sample. I have been sick for over 35 years, so I fully understand how it's almost a full time job to just manage it and the meds, and the insurance, etc. Try to focus on what you CAN do. You're lucky you are able to work. I am not, and I miss my profession terribly. I am glad you found this board, where you should get understanding and support.

    Last edited by Administrator; 01-05-2017 at 02:30 PM.

     
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    Old 01-05-2017, 02:43 PM   #3
    wishiwerewell
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    Re: I do not feel well - Why are autoimmune issues such a mystery?

    Ladybud,
    Thank you for your thoughtful response. Your reminder to me about what the autoimmune system is and how it is supposed to function is incredibly helpful. I find that I'm focusing on my problems and that is shrinking my world.

    About work, the funny thing is that my part time job just got shorter. My bosses were kind enough not to fire me. It's a blow to the ego/psyche. The more I do, the worse I feel, then I get really sick. So they've done me a great favor, really, but reality is we need $$ to pay the bills, don't we. It's a conundrum. I'm having to find other ways to earn money (photography) as my own boss since I can't be relied on - which is awful. It's a new normal, I suppose.

    Thank you again. It's good to have someone who understands.

     
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    Old 01-05-2017, 02:50 PM   #4
    wishiwerewell
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    Re: I do not feel well - Why are autoimmune issues such a mystery?

    Arthur,

    It's a GREAT question and I don't mind at all. Yes, food changes have helped me a little. We are low carb, started two years ago. It didn't solve anything, but it did ease some problems.

    The really odd thing, speaking of food intake, is that my doctors, including my GI, don't recognize food as an issue. I think that they don't have specific data about it to be able to tell their patients, "Yes, this is good," or, "No, that'll inflame your issue." The most they can say is to try things, try new foods, eliminate others, to see what helps or hinders. So that's what I've done. I stick with low carb (no bread, no potatoes, etc) high veggies and meats (no processed things if I can help it).

    Thanks for the query.

     
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