Fatigue

[Jeigh44]

Hi everyone,

I have a question about your fatigue.  I have had bouts of fatigue but never like this.   It has been present at some point everyday for about 4 weeks.  I just had my blood work markup about 1 month ago, and nothing was out of the ordinary.  Can any of you sjoggies tell me what your fatigue feels like and if you have it this often?  I have been on imuran and plaquenil for years now.   My fatigue feels like my body has been hollowed out, flu-like, but I am not necessarily sleepy.  It is such an odd feeling.  My clients said I looked pale as of late. 

[Joe S.]

Before I started taking cistanchi I could not get out of bed more than to eat and hit the head. I would often drift off during meals or in the head. I do not have the energy I used to and I am not pale any longer. I do take supplements.

[araminta]

I was struck by your description of feeling hollowed out, as that was exactly how I felt when all my symptoms really kicked in three years ago.   I remember waking up every morning feeling tired and headachey, and thinking to myself it was as though my core had been removed!   Unlike any other tiredness I'd ever had.

I still feel tired a lot of the time, but that particular weird, awful feeling did wear off after the first year.

[irish]

I have had this bad fatigue about 20 years. I can remember years ago feeling like my resting times in my recliner would result in me sinking into the bottom of the chair and into oblivion. I didn't have it that bad all the time but I was still working then and just getting dressed and out the door took me much longer as I had to frequently rest. My get up and go got up and went is certainly something we can all relate to.

When you are experiencing this fatigue for the first time make sure to get your hemoglobin and ferritin level checked This anemia can knock you off you feet and can sneak up on you. If this is a ne aspect for you I would check with the doctor as there might be something else going on that could be totally unrelated to your autoimmune disease. Good luck Irish

[Pepita933]

Fatigue, yes.  I've been living with that for over 20 years.  I think the memory problems go with it.  There has been an article recently about sedentary people having problems retrieving information.  I think many of us have experienced this brain fog.

[lorigacc]

How do you explain to others a fatigue that all the sleep in the world doesn't touch?  For that matter....how do you describe brain fog?

[SjoGirl]

It varies including the type you describe. Sometimes no matter how much or how well I sleep I feel sluggish. Some of it depends on how much pain I am in, the more pain the more fatigued I might be.

Here's a great piece from the Sjogren's Foundation that describes different types of fatigue http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue.

One other thought that I often share is that all symptoms are not necessarily just about Sjogrens. People's energy levels ebb and flow with times of year, days of the week, and some believe even with moon cycles. Allergies can also cause fatigue. It's helpful to try to figure out if there is a particular trigger.

[Jeigh44]

Thanks for all the replies.  This site is truly amazing.   I am so thankful to have a community who understands what this awful disease does to your body.  I am 37 years old, and a personal trainer.  The fatigue has been very difficult for me, considering the job that I have.  The fatigue is not all day long, but there are periods during the day that I feel hollow, and so weak, like I am too tired to even move.  (but not sleepy tired).  This is the first time the fatigue has significantly interfered with my life, so I wanted to get some feedback from you guys. 

Best,
Justin

[susanep]

Once my sjogren's and Lupus became active I have since suffered with extreme fatigue. If I am going for a doctors visit or something else that will involve some time away I have to take a provigal to have the motivation and a fake sort of energy to get through it. For me it just helps me to feel a bit hyped up, but it's what the Rhuematologist put me on. It's very expensive, and you have to qualify for it by having sleep apnea which I do or where you just fall asleep wherever you are.

The tiredness has been one of my most debilitating symptoms. I had to retire early from my work as a teacher due to it, and lack of mobility, and brain fog.

susanep

[Kristian]

SjoGirl- Thanks for the article link   That is very helpful in describing the fatigue and how it varies to other people.

I definitely feel like a zombie sometimes as no energy to function, can't think straight, and will weirdly be too tired to sleep.

My bad fatigue will be like my body is made of lead and can barely move coupled with barely being able to think, a mental soup that you can't quite seem to pull the information out of your mind even for simple stuff like what I had for lunch earlier in the day.

Good to hear how everyone else deals with the fatigue.