Just a little conversion disorder
I have been sickly my whole life. By the age of 8, I was labeled an "attention seeker."
I became a nurse and worked in that field for 30 years. I had weird symptoms, even I knew they didn't make a lot of sense some times. But I also knew they were real. I had seen three rheumatologists that all blew me off, even though I had a positive ANA. Fibro, of course, so then they said, don't bother coming back.
My average BP for almost 20 years was around 250/130. They did all kinds of tests. I ached and hurt and felt awful, had palpitations. I ended up with a pace maker. I told them my hands hurt and I couldn't stand to cook because of my ankles and toes.
I finally had a heart attack, got kidney stones that required surgery to remove, had 2 stents placed in my heart in a five-month period. My kidneys are damaged.
We moved to a small town, population 16,000. I went to a rheumatologist here, where he did the anti CCP and it was sky high. Ultrasounds of my hands revealed severe RA. As have my Vectra D testing. I went to a nephrologist here that had me diagnosed with aldosteronism in 5 minutes. My adrenals are sick and have been for 2 decades. Having had to be an advocate for myself for 2 decades, I had asked my primary 15 years ago to check my adrenals and he refused, saying it was too rare. Well, yes it IS rare, but I have it. If decent doctors had actually listened and actually tested me, it could have prevented or put off the heart attack, the kidney damage, so many things.
Some days I am bitter and some days I just shrug it off. There's nothing to be done about it now. My rheumy believes I had RA for many years before I got the diagnosis. I have been treated with all kinds of things for two years and my inflammation levels are the highest they have ever been. I was recently diagnosed with pulmonary hypertension secondary to RA.
My advice is never give up. I went through long periods that I stopped trying to find answers and it didn't help me at all!
I have 2 brothers and a sister who also have RA. It's a family affair. I would like to find a site where people don't tell me they have a miracle cure or suck it up or whatever. Just a site I can look at and say, oh yeah, I know that feeling....this sounds angry I guess, but it is not meant to. It is just my story. I wonder how many people who have never worked in the medical field ever got through the maze of doctors that just don't care any more????
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