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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Comments

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  • glad2bme
    3 years ago

    So sorry to hear all that you have been through over the years, you are a true RA warrior!
    I too struggled for years to get anyone to listen to me, and still do today actually. I am lucky enough so far as to not experienced a heart attack or other such severe ailments, but I do have cardiac disease with resulting tachycardia and high blood pressure and fear every single day that I will have a heart attack and die. I cannot get the cardiologists to take me seriously. My first serious event (which I still believe was a mild heart attack) that put me in the ER was scary but upon the ER doc reviewing my meds he discovered I was overtaking my pain meds (yes because my symptoms are not being managed well enough to function daily) and blew me off as it being anxiety and overdosage of meds. The only tests they ran were blood work and a chest X-ray and sent me on my way. Told me if I do have another episode then I can make an appt with a cardiologist to be evaluated, which did occur less than a week later and took another week to get an appt. I’ve seen two different docs in the past year and all they do is put me on beta-blockers (which makes my Reynaud’s worse) and tell me to exercise and lose weight (I’m only 20lbs overweight due to steroids and thyroid issues, and oh yes, let me be sure to fit in that 30min of aerobics 5 days a week, what was I thinking not making this a priority seeing as how I can barely get out of bed some days and going to the grocery store wears me out!)
    I know I need to find new docs but I’m in survival mode right now and too fatigued to try anymore. (Oh and I can’t even count how many times I’ve been told it’s just depression, for years and years).
    I tend to think that people in the healthcare industry such as yourself have it even worse because the docs think you are overexxagerating your symptoms because of the patients you tend or trying to self diagnosis because you know too much and docs hate nurses to diagnose themselves or others because they lose their egos and power to control the situation.
    Hang in there, this site is one of the best for support, along with many others out there and you will find very few haters or negativism, although I can’t say they’re will be none, unfortunately even haters and pessimists get ill too and try to bring everyone down with them but many of these sites are moderated and their comments stopped or at least controlled to some degree and what I’ve learned to do is flat out ignore them and move on. There are also those rare few who try to claim they were healed by some miracle pill or whatever but what I know is that if that’s true, then they were probably misdiagnosed in the first place and don’t belong on these sites so I ignore them as well and move on to the real posts by people truly experiencing the same things we are.
    Sorry for such a long comment but you’re post resignated strongly with me and I just wanted you to know you are not alone and keep up fighting the good fight, and welcome!

  • Morgan617 author
    3 years ago

    I’m sorry you’ve had a hard time too. I just really don’t get it. My RA is out of control right now, I am so cranky! I had chest pain and went to the ER. I was actually treated with respect, they wanted to admit me, even though the tests did not show a heart attack, he was concerned my body was sending out warnings. The doctor on call at the office said no just her home and have her make an appt. The ER doctor was shocked. I told my husband I had no intention of calling them, however, they called me the next morning. But my appt is 2 weeks away. I am a person who has already had a heart attack and two stents. sigh.

    I think you should try and get in to a cardiologist. They will at least do a medication stress test or go straight for a heart cath and you can at least find out if there is a problem brewing or if things are ok. I happen to have a cardiologist who is aware of what RA can do to the heart. I didn’t for a very long time. Just for your own peace of mind, it might be the best thing you can do for yourself.

    Thanks for your support and good luck! You might have your rheumy send a letter to the cardiologist and explain their concern. I know it gets old having to do all this yourself, but any more, it’s all we have.

  • Lauren Tucker moderator
    3 years ago

    Hi Morgan,

    Thank you so much for sharing your story here. We are sorry to hear it took so long to get a diagnosis. You’re very strong and courageous to be your own advocate and to have the will power to never give up; what a great message.

    We are glad that you also have a strong support system around you. In addition to RheumatoidArthritis.net you could also contact the Arthritis Foundation (http://www.arthritis.net- 1800-283-7800) for a support group where others might share similar experiences.

    Please come back anytime.
    Thank you for being part of our community.

    Best Wishes,
    Lauren (Community Manager RheumatoidArthritis.net)

  • Morgan617 author
    3 years ago

    Sorry….big flare and other stuff going on…thanks for the response!

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