Never in remission

[bloodless]

I've asked 'til I'm blue in the face, when will I be in remission. Sjogren's, I remind them, is supposed to be a disease of flares, yet I haven't had any periods free of pain and extreme fatigue. What's up with that?!! I'm not as miserable as I was before I was on plethera of drugs, but still, where's my respite from the disease? I think I'll go eat a bunch of worms now......(referring to the pity song, not really gonna it worms).

[wildforwater]

How were the worms? 

I'm feeling much better with my plethora of drugs as well...but definitely no remission. 

When I was first getting sick and didn't know it, I would have weeks of feeling well, but I was never 100%.  Since this disease got the best of me about two years ago, I think I've had two days where I was symptom-free...or it just felt like I was symptom free.  Who knows.

Hang in there, knowing that you are not alone.  Hopefully, you'll get some good days soon.

Maria

[warmwaters]

For me, there's never been any "remission" - days where I feel like my old self.  Closest to that was when I was taking Cellcept. I felt much better, until I got a severe infection, and had to discontinue.

What I have are days that are my "usual" level of aches, fatigue, etc, and "flares", where I feel much worse. The degree of "usual" pain has changed over the years (getting worse of over time).

I don't say this to discourage you - there are many patterns for many people. This happens to be mine.

[quietdynamics]

With "Sjogrens, Lupus, Fibro, GERD" sounds as though your body is dealing with a lot, as are your doctors.

In all of this time I had one experience of "remission" feeling symptom free, for perhaps two weeks last September, 2013.. It felt so 'unreal' I was afraid to even say it out loud.
Then gone.. no rhyme/nor reason. No new meds. Wish I knew why.

Then symptom free with a trial on Predisone.. so manage inflammation.
*Interestingly, when stopping Pred, I was able to finally discern Sjogrens pain/symptoms vs. Fibro. (as I was still talking usual meds.)

Meds mange symptoms (trial and error according to individuals) and do not guarantee remission, rather they can hopefully ameliorate them. Plus chronic conditions such as autoimmune for patients is along a spectrum... patients similar, yet different.

Keeping a diary of events, triggers, symptoms----> pattern --->lifestyle changes adds to ameliorating the degree of symptoms, so I can be proactive and circumvent them to the best of my ability.

In the course of the lifestyle changes some things are lost.. but, there are things to be gained, new strengths, and creativeness to be found.

 

[bloodless]

Thanks guys!

I feel better knowing I'm not the only one. No that I would wish it on anyone.

I guess all the info sjogren's the docs put out there about occasional flares is some more of their downplaying the disease.