Can You Describe 'flares' To Me?

[comfortzone]

I know I struggle with an 'invisible' illness which is disabling. Yet I do believe there are times I think I've imagined it all when I'm feeling almost normal and pretty strong. Then again I have weeks that feel disastrous in terms of productivity, pain control, mood & energy levels.

I've got that EDS/HM or Hypermobility Syndrome and I have read in forums that this can account for a lot of disablility in lives - and that it can come and go in severity - pain, fatigue, insomnia etc... Though I'm pretty sure not all EDS patients experience dysautonomia....

Here as well with dysautonomia issues - I again read about 'flares' or times when it seems your vital signs are peculiarly but familiarly way out of wack - moreso than usual for the individual.

So I'm hoping to read your recent experiences with flare-ups - like how long do they last, do you regain pre-flare energy etc. soon enough in the end? If your cause for POTS or other dysautonomia diagnosis isn't autoimmune - do you still get flares? Is this common knowledge amongst informed medical clinicians - like they expect to hear this type of symptom pattern? Or is it the 'underground' of common experience shared - with little backing through doctors...

Thanks everyone!

[lissy]

Flares ----Relapses I guess all the same

Flares are usually described in inflamation ...autoimmune affecting organs or systems that can be tested

I don't really know if you can call a day here and there a "remission" does it have to last a certain amount of time???

And does a Flare or Relapse have to last a certain amount of time too???

I think we are all different, my doctor has said some days are better than others even if it seems to be gone it may come back, there is no prediction. Probally depends on the cause .

My vitals are always the same no matter if its a good day or a bad (can speak in terms of weeks and months also) my vitals don't change to much always tachy when standing . So no they don't become MORE out of wack when I feel my worse. Its the symptoms and how they affect you at that time.

Mine have lasted a year 1/2 not to many good days and I have had a few months thinking I was cured meaning symptomatic not vital wise.

So my own personal opinion is" flares" to me ,mean= you have more symptoms

And about Doctors knowing about this hopefully the ones that specialize it it do. But pretty much its all what the patient says unless they have it themselves or if the patient does have extreme changes in vitals.

Lissy ****hopefully helped

[Tuesday]

My flares are pretty common. I might have one good week in a month where I feel 'normal' again (whatever that is).

When I wake up and I feel like crap, I'm in a flare. Usually my bp is really low, or the pulse pressure is narrow, which confirms that there's a reason I'm feeling like crap. My hr will be super low (40's-50's) resting, and will skyrocket when I stand up and walk around (130-140+). I get dizzy spells too, sometimes vertigo so bad I can't get up.

Then I have days where I can get up and go to work and feel great.

It tends to be worse in the summertime when it's really hot, or if I'm sick or have been injured.

I'll have a few bad days in a row, sometimes a week. Then I'll feel ok for a few more days and eventually I'll wake up feeling awful again.

I guess everyone's pattern is different though. I used to have more good days than bad, it just seems to be getting worse for me this year.

[dianne.fraser]

Nowwhat

I don't have POTS and I don't know whether my illness has an auto-immune cause. I tend not to have non-symptomatic times, only times when some of my symptoms sleep.

I have what I call 'exacerbations' - usually times when most or all of my symptoms are active, my active symptoms are more severe and new symptoms can emerge. I'm always anaemic during these times and my night-time respiratory symptoms recur. My exacerbations have mostly been caused by over-work, lack of rest, too much activity or medication that didn't agree with me. I deal with them by stopping whatever is aggravating my illness, going onto bedrest and doing all of the things that soothe my illness. My exacerbations have usually lasted as long as it takes for me to address them; it has usually taken 2-4 weeks to recover pre-exacerbation functioning.

I actually used to trade over-work for exacerbations because I was confident that I would bounce back with two or more weeks of bedrest. My last period of over-work, however, was followed immediately by successive infections - a stomach bug, then chest infection, laryngitis, tooth abscess, sinusitus, conjunctivitis and then tonsilitis, which recurred twice.... Instead of recovering with bedrest, I kept going down-hill and, for the first time, my bladder started to fail.

To be honest, I was fairly hysterical - it wasn't clear that I was going to regain any of my pre-exacerbation functioning. I've recovered somewhat in the last 18 months, but I haven't regained all of the functioning I lost. My focus now is on daily management of my illness, and on preventing exacerbations.

With best wishes

Dianne