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Hello..my Name's Christine And I'm New


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Aw, I just wrote up a nice intro, and it's gone...all gone! :)

I'll try again. My name is Christine and I live in CT with my 17-year-old son and my wonderful husband. Up until two months ago, I was working full-time as a mental health counselor. Unfortunately, constant syncope/pre-syncope spells forced me to leave my job, and I've been out on disability. I was subsequently let go from my job because I wasn't covered by FMLA.

After a tilt-table test, I was diagnosed with POTS, though my cardiologist said, "We're not going to call it POTS since it'll make you look crazy. We'll call it neurocardiogenic syncope." Um...OK. Unfortunately, the cardiologist has been giving me a hard time about continuing to fill out my disability form, even though I am in NO shape to return to any type of job. Heck, it's a trail to run into a store every few days to pick up a couple of items. My fainting spells make driving very tenuous, too. Fortunately, I just started seeing a new doctor, and he seems to be much more supportive. Although he's not very familiar with POTS, he's willing to listen and work with me.

I'm not working right now, so I have some time on my hands and I'm sure I'll be here a bit. This is all so new to me!

Nice to "meet" all of you.

- Christine

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Hi Christine,

You need a doctor who knows about Autonomic Nervous System disorders, usually a Cardiologist, or Neurologist. Any doctor that is willing to work with you, is gold, though, so don't let go!! Welcome to the site :)

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Christine:

Welcome! I have found tremendous support and information from this forum. I hope you will too. The best information is to follow your instincts. If you feel a doctor is not supportive then keep searching until you find one that is.

I hope you feel better soon.

Pam

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"Since POTS will make you look crazy."

Oh gosh, I hope that doesn't mean POTS is being viewed as negatively as fibromyalgia. I don't want to open that conversation, but frankly people with fibro are screwed because the majority of the medical community sees them as crazy and/or latent munchausens/attention seekers. Which means little funding for research and little healthcare for them.

I was optimistic when my cardiologist gave his unsolicited opinion, "Fibro is fake, POTS is real" so I was thinking that doctors are at least willing to say that POTS is a physical illness, but I hope hope hope hope hope that it's not starting to roll into psychogenic territory. Because once that's established, like as in Fibro - it won't go away easily. I mean it MIGHT with CFS, but I don't think CFS ever got as bad a rep as Fibro did. You can read on doctor's twitters/blogs, it's a running joke about fibro patients. It scares me honestly.

Anyways, welcome to the forum, there is quite a resource of knowledge here, and although there are still many answers left to discover, it does seem that lately there's been a lot of meaningful research being published.

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Well I have a friend who has Fibro and let me tell you it is very very real and let a doctor get fibro, cfs, or pots and I am sure they will look at it much differently.

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