WE BEEN TALKING FLARES!

[sass]

As we having been talking about flares, I decided to go on a research dig...Have found out so much and have to share it with you..

I am sure it will open many topics here and to our doctors.  I Know most have done their own research but for those with limited time and are new, I thought a good discussion on Flares-Causes-Helpful Lists would benefit everyone
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Make sure to seperate your paragraphs frequently and maybe number your hints for us...



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This is the regular sjogrens.org site, but look at what if says about flares and reaction to the Sun.  I know that when I get in the sun now, I am drained almost instantly, I get weak, nauseas and start feeling some flu like symptoms..I usually retreat into the house or shade..Never knew I was bringing own my own flares.

One serious reaction I get is extreme sleepiness-so I have became aware that when I drive I.may fall asleep, or when I ride.  I also have developed an almost paranoia when there is approaching traffic..not horrible, but significant enough to look away when riding. Could these be flare symptoms or warnings..
Anyone else with smptoms when they go outside??  I could be having an onset of a flair and just thinking that I am going crazy!!! or we can still go with the crazy, lol.


http://www.sjogrens.org/home/about-sjogrens-syndrome/survival-tips
Did you know that Sjögren's patients can react to the sun and other sources of ultraviolet (UV) light? Consider purchasing UV-protective car and home window films that are clear or tinted to protect yourself from UV radiation.
Look for the words "broad spectrum" on sunscreen protection. This means that you will be protected from both UVA and UVB radiation.

Sjögren's patients who react to the sun should be especially careful to use sunscreen that protects against both UVA and UVB rays. Doctors now recognize the dangers of UVA light in addition to those of UVB.
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http://rheumatology.oxfordjournals.org/content/44/3/402.full
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ONE OF THE MOST INTERESTING READS HERE WITH A TON OF WEALTH!

://www.hopkinssjogrens.org/disease-information/sjogrens-syndrome/neurologic-complications/

[Joe S.]

I use SPF30 shirts. I get them at out door stores. They are not fashionable but they do help.

[artistangie]

I am happy for this thread!  I do not know why but I am in a flare right now... i work up yesterday feeling flu-ish and by 2 i left work and crawled into bed...i have no clue what brought this one on and i am going to have to start a diary to pin point these things and see if i can help myself avoid at least some of them.

so my suggestion is a diary bec i have read over and over that i should 

[mshistory]

Wow, they make it seem like this is really rare... so, are we just the sickest of the bunch or a lot of people with PSS being misdiagnosed with SLE...?

And that Fox article - SjS isn't terminal!??? I stopped reading much about SjS online because I'm so tired of reading how non-serious our disease is 

It's not SjS related, but Wallace's The Lupus Book finally provided a source of information for me that described what I feel and go through - all except the part on the kidneys. My rheumy has said all along - PSS can cause anything lupus can, except our kidneys are generally safer than with SLE.

[irish]

dry.org is an older sight and I would think that while the information is all good, there has been a whole lot of research and education that has resulted in increased diagnosis of sjogrens.

There has also been more in depth study of sjogrens patients and we are learning that some of the problems that we sjoggies get can be a lot more severe than was known in the earlier years.

One thing that I am learning is that a lot of the stuff that people are having that is more severe has most likely been attributed to some other disease process or of unknown etiology. Nowdays the cause and effect of sjogrens is becoming more clear. Irish

[sass]

Okay, I removed that one.  I do not want to give wrong info.  Trying to find info on specifically ideas that people use involving their Flares and what they are and what helps.''
So,If anyone wants to jump in here and tell us what your flair is like and what if anything you can tell it is coming and how you head it off or let it pass over.

[Skylar]

One of my worst flares came after extensive surgery - OMG. I never want to have an operation again if I can help it.

I've also noticed that any injury, or anything that leads to inflammation in one part of the body tends to spread into a flare. You can do all you can to limit accidents but they still sometimes happens, and sometimes you need treatment that, such as teeth cleaning, that induces some inflammation. When these things happen I try to take action immediately to reduce swelling etc.

[mshistory]

I agree, Irish - I think often people were told they had RA or lupus when it's SjS causing multiple problems. That's why some doctors think I have lupus too but my rheumy says SjS definitely causes all of issues.

My flares come on pretty quickly and involve a huge increase in joint and muscle pain, fatigue, hair loss, headaches, nausea, and possibly more fevers but I run low grade fevers frequently anyway!

[Joe S.]

I tend to view most of my flairs as an allergic reaction. Often when nothing else will work for me, an antihistamine will put an end to my flair.

[sktaylor]

My flares occur at different times.

Sometimes it is the weather and there is nothing I can do but wait it out.

Other times I have a Flare because I have done too much the day before. These are by far the worst. I usually just have to stay indoors and get plenty of rest. I become a couch potato for the duration.

I have not found anything specific to relieve my Flare. I run a low grade fever, feel achy, and usually end up with a migraine.

If anyone does have something that works for them I would like to know. I have tried Medrol dose pack but it brings on a severe migraine, so I can't take it.