Why am I so tired all the time?
It used to take me one day to do my laundry but now6it is taking me a week.
Fatigue is regrettably something that goes hand in hand with Sjogren's. If it takes a week, sometimes it just takes a week. Thankfully it's been awhile since I've had a day where getting dressed was too much to do. Proper rest, doing some exercise (I know it seems impossible to even consider that word when laundry has become a challenge), reducing stress and watching what you eat are all things that can help you to have a bit more energy. Out of curiousity, are you newly diagnosed? If so, you've come to the right place to ask questions, get support, smile and commiserate with others. Pace yourself and nap if you're tired.
Thank you for the advice. I greatly appreciate it.
I am struggling with the fatigue really bad right now and coping with it is even harder. My life is 90% less stressful than it was when I was diagnosed and it is worst now than it was. The more active I am, the more days I need to rest to be able to function and still work, but on the Sjogrens Foundation website there was an essay someone wrote on the 13 types of fatigue and it explained exactly how it really is. A really good read!! You probably can Google 13 Types of Fatigue and it will pop right up! Good Luck!
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Here are 2 articles a lot of people suggest reading, I tried to find another 1 that I read some time ago that had great 2 word descriptions of fatigue like: tired-wired. I couldn't find it though, so I thought I'd just post these for you. Hope they give you some insight, and perhaps help you explain things to others.
13 Types of Fatigue: http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue
Spoon Theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
The spoon theory was so comforting to me when I first heard it! I struggled with extreme fatigue and the one thing that has helped is when I went to a functional medicine practitioner that, among other things, did food sensitivity testing (different than food allergies.) Once I took those high reaction foods out, I got so much better. I got my life back. It may not be for everyone, but I had to mention it because it has improved my quality of life. Hang in there.
The fatigue is probably the worst part about being ill. You have to find ways to get enough rest. I often leave my clothes in the dryer and put them away the next day. I plan events when I know I can rest the next day, and I have learned to say "no". Do the necessary first, and then if you still have energy you can start on everything else. Eat healthy and stay out of the sun. Drink lots and lots of water.
Hi,
I found out that some of my fatigue wasn't caused by just Sjorgren's, I thought you might want to check it out. When I was first diagnosed, my Vit D levels were found to be very low and my sodium levels were dangerously low. Since then I take Vit D supplements because, of course, we can't be out in the sun. The sodium is much trickier. Taking sodium tablets is not recommended so I drink Gatorade and and add salt to my food. It helps my levels but the salt on my food can sometimes irritate my mouth (Sjorgren's makes life very complicated). I hope this helps. I'm still tired all the time but some days I feel able to do more, even 2 or 3 loads of laundry! Take care
Hi,
I was diagnosed about 8 months ago and still have symptoms developing. The fatigue is the worst. I have days when I get up and can hardly make it to my recliner. My doctor has started me on Methotrexate which seems to be helping. We have not gotten to a dose that will last me all week as yet. Because of it's toxicity we have to go slow. One of the symptoms I have never heard anyone else discuss it hot flashes. I know it is from the SS because in the first part of the week, after my shot, they go away. As my shot wares off they can become very intense. Does anyone else have problems with this?
I have hot flashes, but just assumed it was the start of menopause! Never knew it was a symptom of sjogren's - lol
Sandy said:
Hi,
I was diagnosed about 8 months ago and still have symptoms developing. The fatigue is the worst. I have days when I get up and can hardly make it to my recliner. My doctor has started me on Methotrexate which seems to be helping. We have not gotten to a dose that will last me all week as yet. Because of it's toxicity we have to go slow. One of the symptoms I have never heard anyone else discuss it hot flashes. I know it is from the SS because in the first part of the week, after my shot, they go away. As my shot wares off they can become very intense. Does anyone else have problems with this?
Hi Sandy,
I was diagnosed less then a year ago also, and I did started to have hot flashes last week (and night sweats) Definitely the first time in my life I feel this hot, I mean I've been freezing since birth! (living in Canada and working way up north doesn't help...) I have Raynauld also, and am so use to being cold ALL the time, that I don't even know how to react or what to think about hot flashes.. It sure doesn't feel good or right but a weird part of me won't complain about it (..for now!) ;)
I have been asking myself a similar question—why am I NOT tired all the time? I was diagnosed w Sjogrens 2 years ago (NEURO Sjogrens they say) but I have never had fatigue in the 4 years that I have been sick. Reading all the other posts makes me question my diagnosis.
Thank you Rae for the link to 13 types of fatigue! I was diagnosed yrs ago but I blamed most of my fatigue on fibro. I think I didn't want to believe that Sjogren's was that bad. I know that sounds stupid but I thought if I could conquer the fibro and IA I could handle my primary Sjogren's. I'm going to send that link to my kids, family and friends. I think it might help them all understand my illness better. It certainly helped me feel better about myself.
I would definitely question the diagnosis if you do not have fatigue. My rheumatologist says that is the number one complaint. I have not heard of anyone with sjogren's that does not have fatigue.
I suppose it could be the meds that I am taking but even before that my symptoms were all neurological and there was still no fatigue.???
Sandy said:
I would definitely question the diagnosis if you do not have fatigue. My rheumatologist says that is the number one complaint. I have not heard of anyone with sjogren’s that does not have fatigue.
I have dry eyes for many years now, and since 2012 when my tonsils was removed I suffered with dry mouth. I never thought more of this issue. Until I was diagnosed earlier this year. It was like a puzzle coming together. When I’m excited / anxious the dry mouth is worse. Even having intercource has its toll. But at least I understand the syndrome much better. With the fatigue, I learned to take an hour nap right after work. Then I proceed with small tasks. I have a wonderful husband which understands the symptoms and it is wonderful to have that helping hand.
I understand how you feel. I am a lone parent and my daughter is 4 years old. I work full time as police officer. I have severe rebound fatigue and it’s brought on by stress and anxiety. I haven’t had an attack for almost a year and then 3 weeks ago I had a full one flare up that left me exhausted.
I feel frustrated by it all as I used to compete at national standard netball and 400metre hurdles. I agree with Rae exercise does help. Because if you have a flare up your muscles will recover quickly. Trick is to do low impact exercise and listen to your dbody. Good luck 
I feel the same way. That is characteristic of the syndrome.There’s a book that explains all the issues related to our condition: The Sjogren’s book. I truly recommend it. I learned a lot from it.
Hello I do to get realy bad hot flushes, I never related them to my ss, it has gotten to the point that I don’t like been around people because I start sweating like crazy and people looks at me lime Im crazy, is pretty embarrassing