Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: SjoGirl on January 10, 2019, 12:07:59 PM

Title: Flare -- Venting
Post by: SjoGirl on January 10, 2019, 12:07:59 PM
Oi so long, I went so long with being well. I was great all summer and most of the fall, though quite overworked (my own fault) .

I started on a downhill slide at the holidays with various symptoms such as hands swelling. Now my hands are swelling so much at night that I can't even bend the left one. My feet are somewhat swollen but not as much. I ache in spots and my hips are quite tight.

It's been 11 years and this is when I have to remind myself that this is a chronic illness. I know I'll be better again, I'm just not sure when or if it will take steroids to make it so. Ah, such is the life of a Sjogie with RA. Thanks for listening.
Title: Re: Flare -- Venting
Post by: irish on January 10, 2019, 05:02:15 PM
Well, sorry to hear that you are having all these issues crop up at the same time. I have to admit that 11 years doing pretty good sounds unbelievable to me. Hope that you can get things under control. The problem with having flares so seldom is that you aren't totally knowledgeable about what your body could do to you. Makes it harder, I would think, to always know what to do about the ailments and when to take things really seriously. If it hurts badly that is a good clue that something significant is going on. It is hard having chronic illness that is for sure. Hang in there and let us know how you are doing. Gppd luck. Irish
Title: Re: Flare -- Venting
Post by: Carolina on January 10, 2019, 06:38:00 PM
Oh YES! SjoGirl,

It took me forever to realize I was in a FLARE a couple of weeks ago.  I had more pain (but I always have some pain), and more fatigue, but honestly it was the depression that was so terrible. 

Finally I REALIZED I was having a flare of inflammation related to my Immune Disorder, DUH!

I just needed one 4 mg of Medrol to interrupt the flare and put me back to 'normal', which is always changing for me, so it is 'the new normal' or the 'latest version of the 'new normal'.

Whatever it is, it's WAAAY better than a Flare, for sure.

Hope you are feeling better!

Hugs, Elaine
Title: Re: Flare -- Venting
Post by: SjoGirl on January 11, 2019, 06:11:05 AM
Hi and thanks for the support.

Irish, it may have been unclear, I haven't been well for 11 years, it's been 11 years since I first started experiencing symptoms. Out of those years if you put together my good months they might total one to two years of feeling good. Most recently I enjoyed about a 3-5 month stint of feeling quite good, many days without pain and was lulled into thinking all would be well for a long time. Now it's back.

And yep, something is going on, the question is what. That's why I asked about testing because I want to know if this is progressing or maybe the meds just aren't enough. It does seem that about every six to 12 months I need a med adjustment. Winter is the worst and we are experiencing very frigid weather all of a sudden, the wind and cold don't help.

Thanks for listening and for caring.
Title: Re: Flare -- Venting
Post by: irish on January 18, 2019, 10:46:20 PM
I have had Sjogrens for 50 years as near as I can tell and diagnosed in 2003. I have had so many episodes or flares over the years that I have lost track. The only thing that I can think to say is that a flare doesn't seem to mean that the disease is progressing. I think it is just the wane and ebb of the disease. My doctor doesn't do blood work all that often now. He just listens and sees how things are going and will check my ANA and other inflammatory blood work to see what is going on. He does check me every 18 months or so for lupus cause he has always said that I act like a lupus patient.....blood work is always negative and I get meds for symptoms so I just have to push on through. I don't take pain meds in spite of lots of pain. I use heat and cold compresses and my very cuddly blanket when I am hurting....which seems to be a lot lately. It helps to get out of the house to take our mind off all the  "stuff". Take care and keep hanging in there. irish
Title: Re: Flare -- Venting
Post by: Carolina on January 19, 2019, 07:09:17 AM
My blessed Immunologist prescribed 14 tablets of Medrol, 4 mg.

I now have the key to stopping my flares.

I cannot express how wonderful it is to have this last flare behind me.

I never realized how weighed down, how 'stuck inside my pain' I was, until this flare was gone.

During this flare it was so hard just existing, just living with the pain, the 'weight' I experience when even breathing is exhausting , AND I am so sad, so full of hopelessness, which magnifies my pain and fatigue.

It is always going to be difficult for me to move. I have to stand, hold onto my walker, and navigate very carefully, since whenever I move, my body is so unstable that I may fall at any moment.

But now my flare is gone, I feel so much 'lighter'.

Regards, Elaine
Title: Re: Flare -- Venting
Post by: SjoGirl on January 21, 2019, 04:02:37 PM
Thanks Elaine, you are so kind and supportive even as you suffer. Peace and blessings to you.