Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: Deseree on December 01, 2018, 09:26:04 PM

Title: How much do your symptoms fluctuate?
Post by: Deseree on December 01, 2018, 09:26:04 PM
Hi everyone, I'm just curious about how much your symptoms fluctuate. I seem to have days where the dryness is horrible and other days where it's much better. I'm never 100%, but like today, it would almost be easy for me to forget I have this it's so mild (so thankful for the good days!). Maybe it's because I'm still in the early stages, but I'm wondering how normal this is for everyone. Thanks!
Title: Re: How much do your symptoms fluctuate?
Post by: finallyadx on December 02, 2018, 06:46:24 AM
YES!!!  Unfortunately I have some days that are just horrible (like today) and others that are much better!

Sending positive thoughts and prayers your way.
Title: Re: How much do your symptoms fluctuate?
Post by: Sharon on December 02, 2018, 09:40:32 AM
Yes. My sicca symptoms are always there but fluctuate between "bad" and "intolerable".
 
Title: Re: How much do your symptoms fluctuate?
Post by: warmwaters on December 02, 2018, 09:41:54 AM
Lots of fluctuation. And the frustrating thing is you will spend a lot of time trying to figure out what you did (or didn't do) that leads to the good days. Unfortunately, the bad days sometimes will just come, not matter what you do.

I don't want to underestimate trying to do things that help, but understand there will be days where the dryness or pain just happens.

I just had two good days, and it was great.
Title: Re: How much do your symptoms fluctuate?
Post by: irish on December 04, 2018, 12:04:25 AM
If there is a good thing about Sjogrens it is that it is fickle. Here today big time and the next day it can be a nagging thing that is much less bothersome. The problem with this is that life is hard to plan cause you never know how you will feel 2 hours after you get up. I find that immediately in the morning I can often feel "fair" and in two hours I can't get off the couch I feel so lousy. A crazy way to live isn't it. Irish
Title: Re: How much do your symptoms fluctuate?
Post by: araminta on December 04, 2018, 02:11:52 AM
Just as others have said, the symptoms are always there, but more bearable some days than others.   Usually there seems to be absolutely no rhyme or reason to the changes.   However I have noticed that stress makes things much worse.   For instance I always come back from holidays now with either (a) a rash, (b) a nervous twitch, (c) red eyes that make me look as if I've been crying the whole time, or (d) any combination of these.
Title: Re: How much do your symptoms fluctuate?
Post by: bluegardenia on December 04, 2018, 03:31:03 PM
cold weather  and wind are bad for my eyes and dry mouth. so spring and summer are better for me. lack of sleep and stress are the triggers for me.
Title: Re: How much do your symptoms fluctuate?
Post by: janny on December 23, 2018, 06:59:42 AM
Yes, my symptoms definitely fluctuate! Stress (even "good" stress, such as having a family member stay with me) will make my sicca symptoms worse within the hour. A few days of any change at all in my life (even a "fun" trip) will have me down for the count and in bed. I often times have to leave social gatherings because my sicca becomes intolerable and once I'm home and relaxed, I feel much better.
Title: Re: How much do your symptoms fluctuate?
Post by: Deb 27 on December 23, 2018, 02:30:47 PM
I'll chime in here with a yes as well with the fluctuations of dryness. There are times that it's not that bad and other times that it's super dry! I can't figure out a pattern either. Sometimes even my lips, skin and hair also get dry. I take fish oil and hope that helps.