[jellyjazz]

Hello,

I know that flares can be triggered by stress, sun light, infection etc but if all of these were avoided would that mean i would never flare?

I've had my first big flare and am nearly at the end of what i call "hardcore treatment" with steroids etc... now i am more aware i am more careful and have started pacing myself, doing regular exercise, staying out of the sun etc.

So am i less likely to flare with my new way of life or will a flare happen for no apparent reason no matter what i do?
Thanks!

 

[Maia]

In my personal experience, I've had flares triggered for no apparent/obvious reason. No infection, sunlight, stress, etc. I'm sure many here will report similarly

I can also vouch that some of my worst flares have occurred following infection and heavy stress as well as too much sunlight/too much activity in a single day. Additionally, rapid swings in the weather and temperature do seem to affect me as well in recent years. Something I hadn't really noticed much before.

 

[jellyjazz]

Hmmmm.. it's a bit scary knowing that flares could happen at any time without warning..well i guess we get some warning... but still

I just thought of something else... If the flare is caught early enough and treated does that mean it can be stopped before it gets too bad?

And by doing regular exercise and eating the right things and avoiding sun must decrease the amount of flares you get?

I know it's different for everyone but how often do you flare? I've just had my first one and am hoping for a nice quiet few months now!

I'm obviously having a thinking night tonight!

 

[Katharine]

Hi there again

Um, I'm afraid I agree with Maia. I have been flaring for...maybe best not to go there...a while but the triggers will definitely make things worse, bring on an extra sort of mini flare. However, they cannot be blamed for everything.

Definitely eating better (it takes a while to truly change habits), resting when needed, becoming as zen as possible all help. They do help a great deal and they do definitely reduce both frequency and severity of flares.

Everybody's flares are different. Some people seem to have pretty severe ones (that hopefully get a lot less severe when medication kicks in - I hope this is true for you), some people have ones that might seem less "dramatic" but seem to go on and on... can you tell I'm in there somewhere? :lol:

Seriously though. We see so many people come here before diagnosis and just after and then we see them not come back once medication kicks in fully. There are sooooo many people with lupus who have regained almost normal lives, who hardly ever flare. These boards are not necessarily representative of that population. There is no reason to believe that you won't be among those people. I truly hope you will be. And, if you're not, you will have learnt to take things one day at a time and to better cope with the disease, to better know your body, know your triggers and your limits....

With exercise - do be careful that regular exercise is maybe not what everybody's idea of exercise is. Don't push your body where it can't go, don't overdo it. Start very very slowly, very very gently. Imagine you are 70 and full of arthritis. Be very kind to your body. And, only when you are sure that that level of exercise is OK do you go on and do a little more. It might take you months to do what you consider as exercise but you will get there. If you are feeling rotten and maybe flaring a bit - skip the exercise, don't "push through" it!

Catching flares early is important, especially if you are prone to more severe ones. We are all guilty of hoping it will go away if we ignore it. By doing that I have, in the past, made myself rather ill and it took me over four months to get back to where I had been before. Always, "if in doubt, give the doc a call" and don't ever play things down when you do. You won't get any medals for being brave!!

hope that helps,
Katharine

 

[LolaLola]

Dear Jelly Jazz, I don't know if this will help but a very early sign of a flare coming can be depression. Maybe give it some thought if you start feeling down.
x Lola

 

[jellyjazz]

I think because i'm still getting over my first flare i'm feeling a bit unsure as to whether i'll recognise my next one... I don't want to leave it too late waiting to see if it's a full flare or not because as you said it could take months to get back to where you are again.

All my exercise is in the hands of my physio so hopefully nothing will be over done

I guess with most things in life it's a question of Time. As more time goes by i guess i'll get my head around my lupus.

Out of all of it the thing i hate most is just generally feeling so ill and sick ALL the time.. i think thats just beacuse i'm still at the end of a flare - i have had good days so i know things will get better again.

 

[Raglet]

I think it is important to figure out what causes flares in you, and then work from there. For instance, some people may have flares caused by sun, or stress, or sulfa containing drugs, but not everyone. Some are photosensitive, but not others. I personally have not experienced a flare caused by stress or sulfa drugs, but then others have, so you really do need to know what does it for you.

On one hand live sensibly, but on the other hand becoming obcessive about avoiding flares is not healthy either, it is about getting a healthy balance. Over time you will find what works for your through trial and error.

I also think it some have more severe disease than others, some have disease that is more ammenable to avoiding flares by avoiding triggers, others just plain flare incessantly no matter what they do.

best of luck with working out what works for you

raglet