I am almost 39, diagnosed about 3 years ago. I am excited to find this group as I don't know anyone with the disease and struggle sometimes with knowing what's 'in my head'. I see others talking about flares... Does anyone experience random levels of fatigue without a seeming pattern? My job is physically demanding at times and I am wondering if a change in vocation might be wise someday. Do the fatigue fluctuations remain steady over time or overall worsen? Thanks.
Hello Sunny38.
Welcome. I am sure others will chime in soon. This is a diverse group of folks and each one of us can speak about our own experience with dealing with sjogrens and it's "friends".
Personally my fatigue gets more profound during a flare of my symptoms. Usually if I have pushed myself to do more than I should or if my life has more than normal stress then I "flare".
I don't feel like my fatigue is any more now than it was previously has been.
Are you taking any medications for your sjogrens? .
Plaquenil helped my fatigue to be less troublesome in the first years I was on it. Of course I have taken plaquenil for almost eight years.
Hi Sunny! So sorry you had need to find us, but very glad you did. This Forum has been God send to me. Sjogren's affects us each differently and some of it the same. This is a great place to ask questions and share experiences!
I have searched through this forum for many hours and read through many comments. The knowledge accumulated here is astounding. Many more will come and welcome you and share their experiences. Many of us have listed our diagnosis and medication list in our signature list which helps cutting through some questions.
Fatigue for me come and goes. I have learned to pace my self, if I don't I sure pay for it later with even more down time. I opted to quit my job since I could afford to until I can get a handle on things. I may go back to work part time. We'll see.
Again, welcome!
Welcome. My eyes were to fatigued to read this last night. Fayigue comes and goes with pain levels for me.
Hi Sunny.
Welcome!
No, fatigue is not always predictable. Here are a couple of helpful articles on fatigue:
http://reasonablywell-julia.blogspot.com/2014/08/part-one-managing-sjogrens-fatigue-by.html
http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue
Yes, the type of work you do can definitely make a difference.
Best,
Nicole
Welcome,
My fatigue is always worse with a flare, but I have increasing fatigue these days than I did at first. Mine as become progressive, but I still have hope that something will help soon.
Hugs,
susanep :)
Goodness---I wish I could remember how and when and what caused my fatigue in the early years of my symptoms. I always ascribed my "fatigue" with laziness...as that is how I was conditioned to think of sitting and resting. I thought it was work..and demands from work. Looking back, I guess not. I wasn't dxed until I was old...retired...and can control my movements and activities. I can push myself now with travel or too many activities in a given day...but I have the luxury to rest/relax the next day or days. When working--not an option. I can remember trying to go to bed earlier when I was still working. That choice just caused me to wake up too early! I believe, overall, flares can be brought on by exactly what you suggest: stress, demands, the job itself. The problem with changing jobs.professions is not really knowing what the next one brings. You don't really know what stresses will go along with a new job.
Good luck with whatever you decide. Keep in touch.
c3
Thanks to all for the input and information!! In answer to one post, I do not take Plaquenil due to rare side effect of effecting central vision. (I also have RP, a retinal dystrophy that causes peripheral vision loss. ). So for now I try to pace myself better and only take ibuprofen as needed for symptoms. Again, thanks and so happy to find this wealth of information and support!