Hello again, I have just joined you but have found great info already!
I have a question for you though. I have seen lots of people talking of flare ups and I am not sure what they mean.
Do you mean when your salivary glands swell up?
Or do you mean that there are periods when yo have more sliva, tears etc. and others when you have less?
Thanks to whoever will try and explain
Valentina
Hello Valentina :)
Although Sjogren's never goes away there are times that it is better than others. A 'flare' is when the SjS seems to be most active. It can mean swollen glands, low grade fevers, more fatigue and more general pain. Flares can last for a few days or even months. SjS is a very individual disease. Some people don't even seem to have 'flares' and some peopel don't get the swollen glands.
I'm sure someone else will be able to explain it better. I don't really have flares so I can only say what I've read about.
Take care - Scottie :)
Generally speaking, flares are when there's an increase in symptoms, but not always the same ones. For example, sometimes there's an increase in the fatigue, or the aches and pains, or increased dryness. Some flares take the form of feeling like we have the flu, and some are an overall intensifying of the whole disease process, so that whatever bothers us day to day, bothers us much more.
Some flares last a day, others drag on until we feel like the flare is the "new normal", but at least when they stop, we feel better!
Thanks a lot. Your replies clarified it for me.
I have had CFS in the past, so I know exactly what you mean.
In a way, one appreciates life more when one has a disease, not that I wish one to anyone, but I remember being so extremely happy some days just because I didn't feel tired or my throat didn't hurt or else.
Reading the posts in this forum has made me realise that life goes on, no matter what and humans adjust quite well to new situations.
I wish you all and myself a hightened sense of appreciation and gist for life.
Love
Valentina
when I get my flares, I often feel so ill inside...like a poision inside my body...very, very dry and extremely tired, loss of appetite, extreme joint pains, emotional
issues/anxiety-depression
valentina-You're so true about just adjusting your lifestyle and appreciating the good days. I remember reading in a sjogrens book that it is not a life changing disease, it is a lifestyle changing disease. And I totally agree with that because my last flare or new arthritis(and Rheumy no help, will be switching) lasted a month a half and since then I've changed my lifestyle extremely to the relaxation, don't over-do-it way. Kids are even more aware and let me rest more and husband has learned to be more helpful. I used to be the do-it-all person, but no more. Good luck and hang out here, it's super helpful and informative and great not to feel alone with symptoms and problems. Take care --Net
This is an interesting thread. Diagnosed just two years ago, I'm helped by all the meds I'm taking. BUT...I also had a dx of breast cancer 6 months after the Sjogrens diagnosis and had surgery and radiation. After that was finished, so was I. I'm still trying to get back after two years. I did get some fairly quick results from the methotrexate and plaquenil. Not days, but weeks/months. Then the radiation took me back to another place.
My rheumy told me that I'm sort of "in remission" because the meds are working, BUT I am so deadly tired all the time. My leg muscles are weak and my eyes and mouth are bone dry. The help has been in joint/muscle pain. I don't know if I've had a real "flare" since the diagnosis of Sjogrens. Many days, I spend the day on the couch and maybe I'm just being lazy.
I did do more while in Florida for 3 weeks than I've done in the past 3 years. (not quite, but sort of) Lucy