(No Subject)

Yesterday I had another "spell" - which I haven't had in many months.  I am unclear if this is the beginning of a flare - or something else altogether.   It usually starts with  a couple heart palpitations, then feeling weak with a flu-ish malaise that makes me want to just lay down, very pronounced dry mouth/parched sensation, muscle aches and heavy heavy fatigue.  After a bit comes shaking chills- can't get warm, BP is slightly elevated - probably because it all freaks me out.....basically it just feels like someone pulled the plug and unless the generator kicks in I'm done for (not to be dramatic, or anything, lol) Nausea is another thing - fleeting, but present.

I laid down when it started and 1 1/2 hr. later it hadn't helped much.  I was no good for the rest of the night, but did feel somewhat better - just wiped out.   I had a heart cath about 5 years ago because of these spells - and my heart etc. turned up no problems whatsoever.  I have palpitations from time to time - and have had for 20 yrs - been thoroughly checked out - cardiologist finally said he thought it was GERD related. 

We have a new puppy x three weeks- (what was I thinking?lol) and I've had to be more active and "on duty" of late - losing some sleep in the process.  I had several mouth sores last week for about a week......and I seem to be running a very low grade temp by late afternoon - just 99.6 or so - but I usually tend to run subnormal.

Anyway - does anyone have flares that begin like this?  Or something similar when you've overdone things?  I've also been outside more - sometimes midday - maybe the UV getting me?  I feel better today and have been able to eat.....just really fatigued and stiffer than usual.

Any and all thoughts, appreciated. 

Lucy

Thanks for responding, Lynn.  I have laid pretty low for 3 days and tonight it feels like I may be rounding the corner on what certainly did feel like flareville.  I guess the persistant low grade fever and mouth sores are the warning flashers....will pay more heed in the future.  

I realized too late I'd forgotten to put in a subject title for the post - tried to add it after the fact, but couldn't figure it out.  Add brain fog to the list!

Lucy

Lynn -Thanks for the thought - maybe that was my problem, too, lol.

Thanks, Sue!  We are crate training puppy and I don't know how I'd manage otherwise.  She is certainly keeping me on my toes and it's tiring, but she does make us laugh and she likes to cuddle when she's tired.  What kind of dogs do you have?  "Sparrow" is a lab/australian shepherd mix.

 

I think the main question I was trying to ask - this finally comes thru the fog - is whether anyone has a sudden onset of all the above-mentioned?  As in, relatively ok one minute, and then suddenly it was literally like someone pulled the plug or pushed a button and "instant flu".  And then it took me 3 1/2 days to climb back to my relative "normal".  I know I had been pushing myself, but it still took me by surprise.

My diagnosis remains UCTD - though recently had a positive RF along with the +ANA.   So~ I'm on my third rheumy, after 4 yrs and I still sometimes wonder if there isn't something else at work here, slipping totally under the radar.

I see you're on Atenolol - I've been taking Inderal and the rheumie suggested switching to a calcium channel blocker.  I took Atenolol many years ago and it worked well - I think I'd rather go back to that.   Anyway - you're right about comfort in shared misery - thanks for the input and encouragement!!!

Lucy

Hi! Lucy and Panther Fern, and all,

Brain fog, for lack of a better term for cognitive impairment, is the main reason I had to stop working. Words, gone. Thoughts, chaotic in slow motion. Overwhelming anxiety, scary. And I can go to bed at my usual 5pm crash time, and wake at 9 pm with my nerves screaming and every neuro symptom in the book driving me to the prn prednisone script. My usual trigger is when I have finally weaned back down to my maintenance dose of 5 mg of prednisone every day, and it's like lupus screams "gotcha' and the crashes start all over. I have two little poodle schnauzer mutts, Wilbur and Alice Mary, and they sleep in donut beds tucked under polar fleece blankets. They have been trained to stay in their beds unless told they can get out, because the burning pain and swelling in my legs would wake me up because they wanted to sleep tucked against my legs. My husband built me a bed cradle to hold the sheet and blankets off my legs. We adopted Alice as a playmate for Willie, because I can no longer walk far, or for long. I have scary high blood pressure, and I have been blessed that my meds help so much. I am glad you are going to a neuro, ask around for one who is familiar with pts. who have autoimmune disease. My primary family doc, my neuro, and my rheumy are excellent about communicating together. The neurotin I am taking has been the one thing that helped my neuro symptoms the most. I hate the neuro flushes, when I am suddenly bone chilled freakishly cold, then burning and feverish without a fever, and it's nothing like the hot flashes I suffered when I went through menopause when I was 50. Hey, wanna nut?

suetoo

If you are wondering about cognitive dysfunction, and want a true measure of it's progress, you can visit a neuropsycologist. These are the guys who do the extended (all day) testing of mental capacity for all kinds of reasons. Although my rheumy suggested a dr (at the request of my insurance company, who thought I was faking), I don't think you need a referal.

In my case it was quite clear things had changed (you'll need any high-school or college records of progress or past IQ tests, items that show job requirements, promotions, performance, that sort of thing)....the test measured a multitude of things, including hand-eye coordination, memory, response times, etc.

I wish I had taken the neuropsych test sooner than I did - it'd be interesting to have some cognitive function measurements both down & up as my lupus activity has changed.

Cheers,