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Whic do you think best describes your disease course??

1. Sudden onset/ abrupt onset

2. Gradual onset

3. Always had it

And:

1. relapsing / remitting

2. progressive (no let up and worsening - lets hope not)

3. good days, bad days

4. slow improvement over the course of years

5. relapsing / remitting but with progressive features

6. no change from onset

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All of the above? LOL Some features I've had gradual onset, but others had a more abrupt onset.

Seems like I'm both good days, bad days but then also relapsing/remitting. I'm not totally sure whether I'm just becoming more of a wimp and giving in easier or whether I'm having progressive features but on "bad days" there is no change from onset or it's worse than onset. On the other hand, even on my best days, I'm nowhere near where I was before the abrupt onset symptoms started.

Rama- Now I have a question for you? You said this past two months you didn't exercise but just moved a lot during the day but then said that you thought exercise was critical? So does that mean you didn't run 5 km as you had been doing, but you were participating in activities of daily living...like cooking, mowing the grass, etc so you were active, but not doing a regimented exercise program???

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Sudden appearance and good days/bad days (as in "it's always bad, no remissions, but some days are okay and some ****"). My personal theory is that I've been pooling for some time, either due to small fiber neuropathy-induced pooling or connective tissue issues, and that starting Cymbalta messed with my sympathetic nervous system, making the issues rise to the level of observable and problematic. The only reason I've got this hypothesis in the first place is the weird hyperadrenergic/pooling thing my neurologist went on about after my testing, and the sudden appearance of symptoms despite no obvious insult (viral illness, accident, other sickness, surgery, bed rest, etc) :^)

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Always had it. The more I dig into my past, the earlier I see the signs of it in my life.

Gradual improvement over time. I was quite surprised that symptoms of POTS/NCS didn't drastically improve upon recovery from anorexia, but digging deeper I find that POTS existed before onset of anorexia.

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I would say sudden onset, but when I think back I was always bad at exercising and I was always sensitive to epinephrine.

As you know by now, I am pretty new to this, but I have had major improvement, with some bad days. ( I don't even know why I keep coming back here, but I am worried about all of you and curious about any new breakthroughs!)

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Mild constant symptoms for a few years. Then a temporary elevation for a few months that went away for a year. Then a gradual progression to max symptoms over the course of a few months. Then a VERY gradual decline (almost imperceptible, seems almost like constant symptoms) for 6 years. Now a significant decrease in baseline symptoms with daily (hourly) variation.

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Subtle signs for about a year, then abrupt onset from having labs drawn. Then a slow decline over the last few years. Have been pretty much house-bound for six years. Never have a "good" day where I can shop, and definitely could not work anywhere but this recliner! My days are consistent. I don't have days where I can clean house or exercise, so no relaps/remit scenario.

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Rama,

Since you started the subject, what do you feel your response is/was?

I think I've had mine forever - was probably born with it. Have had periods of remission - but, only to a degree - never complete and have had times of near total impairment/disability. Up and down all the time with varying severity.

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Mine was a sudden onset that knocked me out of commission for a while and then some improvement with meds. Now I have quite a mix of good/bad days but have not come anywhere near to where I used to be. I've been pretty symptomatic for the past few weeks and am hoping that it's going to let up soon!

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Gradual onset which seems to be mildy progressive.

Mine started I believe with stress-related GI issues around 13 y/o (dx'd as IBS as a teen), then progressed into other symptoms into my 20s. By 27 I was getting pretty sick; by 30 stopped working full-time. Now 36 and a lot worse than even 2 yrs ago. I have to believe it will improve someday (soon)...

(null)

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It started for me in 2008, One day I was working the next I was a mess. It seems like new symptoms keep popping up daily. Then some of the healthproblems I thought were fixed or under controll are all comming back full steam. Hasn't let up at all since my first symptoms started

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As for me:

Sudden onset - although some weird migraine-type symptoms for a few years prior. Developed strange reactions sometimes to caffeine for about a year in advance.

Relapsing remitting most definately - my POTS seems to follow the description provided for the AAG - 3 months of severe acute symptoms on relapse, followed by gradual improvement - usually improves over a period and then I get remission for a while before I relapse again. Then it waxs and wanes with Ankylosing SPondylitis.

Strangely I now realise I had mild Livedo reticulitis on my palms since i was a kid.

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  • 1 month later...

Mine started I believe with stress-related GI issues around 13 y/o (dx'd as IBS as a teen), then progressed into other symptoms into my 20s. By 27 I was getting pretty sick; by 30 stopped working full-time. Now 36 and a lot worse than even 2 yrs ago. I have to believe it will improve someday (soon)...

Sounds quite similar. I used to get stress-related IBS when i was in my late teens. But first symptoms POTS was 26 I think although I was tired one of the years at college. wax and wane and at times remissions but relapses and i wonder whether they are getting worse each time...

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