Success Stories


Sometimes it's hard to find Success Stories, Positive Discussions or groups that are uplifting on the site. We want to make it easier for you to find them....

So if you leave a link to a positive Success Story or a Blog Discussion post on the site in the comments below, we’ll move it into the main body of this post for easy access for everyone!

Like most auto immune disorders, this one seems to come and go...or ebb and flows.....too bd it will not just stay away ot let us know ot's schedule! Try to rememer the minutes of peace.

http://www.sjogrenssyndromesupport.org/forum/topics/stem-cell-treatment-for-sjogren-s-syndrome

http://www.niaid.nih.gov/topics/autoimmune/Documents/adccfinal.pdf

Here is some rainy month reading for someone!

Folks here said my flare would get better and fingers crossed, today is a noticeably better day.

http://www.sjogrenssyndromesupport.org/forum/topics/new-drug-strategy

Gets me through knowing a flair is just that and it will go away. And I’ve learned to pay attention and really enjoy the days I feel good.

Excellent way to live through this, EnjoyLife! Boy, it feels great on those days I feel good! I have to remember it's 'temporary' when it gets really bad.

http://arthritis.about.com/od/sjogrens/ss/sjogrens_4.htm

I am newly diagnosed this year and wondering: What is a "flare-up" versus normal daily symptoms? How long do flares last? I feel like I have been in one since January. IS this possible and if so, how can I get back to a non-flare situation? Thank you!! P.S. I am a 32 y.o. female.

Hi KazzCase,

I had never heard the term 'flare' until I became a member here, my Doctors referred to it as a 'pain cycle' instead, but there is more involved than pain, I think. There is no specific length of time, no specific way of breaking them, or lessening them other than NOT overdoing it, and babying yourself! That said too much laying around is no good either, it just causes the body more problems.

Reversing the trigger is the best way to get back to the non-flare state of being, there is research in the above links of this particular discussion. Though lengthy and in lofty medical terms, it is living purely, as far as proper foods, rest, NO STRESS... You know the difficult stuff! Some have discovered food allergies, and eliminated wheat, sugar, caffeine, dairy,cleaning products, artificial scents, getting rid of things that produce 'off gasing' like paints, rugs, and vinyl, florescent lights... We're still waiting to meet someone who has flipped the switch on the gene which returns us to normal.

Genetics is such a factor, though most know what set their autoimmune into motion (car accident, severe stress, loss, PTSD...) my Rheumatologist insists it is genetic, all inherited in one way or another, so we were all predisposed, all that was needed was something to set it in motion.

There is gene/stem cell research taking place, looking for a cure. That is where the true hope lies. we are always on the lookout for the latest news.

Stay strong, and take good care of yourself. Good to hear from you!

Wishing you well,

SK

Nice to read posted stories. sometimes it becomes hope to those who are really suffering in severe pain.

Casey….it takes time and paying attention to yourself to know what is your new daily state. From that you will know what is a "flair". From what I can tell, there's no way to know how long each bought will last. SK is absolutely right about being good to yourself.

I like the term in that it reminds me of when someone lights a skyrocket….there is the little flame for a bit, then a big flair before it sets off the rocket. In relation to the pain, you are in your daily state till something causes it to flair up and sets things off. There may be a big explosion (or event) but then it's over and life is quiet again.

Keeping things in the visual (and positive ones at that) help me get through. Hopefully you'll find ways to compartmentalize what's happening and keep it from taking over.

Thank you SK and EnjoyLife. :)

finally, got my diagnosis of primary sjogrens. the doc really explained a lot. trying a pill that helps stimulate moisture glands, only been on it a few days so will see. there was a lot of blood tests done. when the ana test came back clear i was disapointed. not because i wanted to have sjogrens, just want an answer to all my problems. it was 6 years ago when a pa suggested i might have sjogrens because of some sores in my mouth that was not cancer sores. 2013 i had a pulmonary embolism, and in 2014 i had a type of stroke called venus sagittal sinus thrombosis with siezures. it set in motion to see a whole bunch of tests and lots of doctors, neurologist, psychologist, physical therapy, counselor, and finally a reumotoligist.. next a heart doc to make sure my heart is ok after all of this. i actually feel ok, except for mostly equilibriuim which has kept me from driving or work. but i am just greatful for an answer. reu said the sjogrens most likely were the reason for my blood clots, which i am on warfin for. just using refresh eyedrops, biotine for tooth paste, and these pills for moisture producing. joint pain comes and goes but is helped with some exercises the pt told me about and bio freeze. by the way the pills are called, pilocarpine, thats the generic name.

Hi Yellow Rose. I totally understand being disappointed about not having a positive test (for answers sake) but it sounds like you and your doc are working in a positive direction. Hopefully you will find some relief for the symptoms. Glad you have a doc that seems to be really paying attention. Keep us posted!

also reumotologist suggested i see a special eye doc, can't think of name, brain fog right now. but to ask about plugs for eyes.

Opthamologist? The plugs are a pretty common first line of treatment for us. Anything that cuts down on the amount of drops. LOL

that's it opthamologist, brain fog been a problem lately, wish there was a pill or operation for that. lol



EnjoyLife said:

Opthamologist? The plugs are a pretty common first line of treatment for us. Anything that cuts down on the amount of drops. LOL

LOL… I hear ya! I've done some pretty dopey things thanks to that.