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bailing on plans because of fatigue

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Sjogren's Syndrome
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Posted 4/10/2017 7:30 PM (GMT 0)
I'm a relatively private person and I don't like people knowing about my health problems. Occasionally I feel so fatigued that I don't feel like I can go out. I don't like to tell that I'm not feeling well enough to go out. I just don't like being treated like a sick person. My husband won't allow me to make up an excuse if we're spending time with his friends or family. I feel rude if I tell them at the last minute that I simply can't make it without any explanation. I think bailing without explanation is likely to make people angry. A few people that I can't avoid tend to be prone to gossip, so if I tell them, I'm not sure how to handle it. Also, I feel like I usually don't look sick, so even people that know what's going on seem to have trouble understanding. Have any of you faced this dilemma? If so, how do you handle this? Should I just tell people? Thank you!
Posted 4/10/2017 9:06 PM (GMT 0)
I try to manage my energy and limit my obligations. That is, I usually plan only one thing out of the house at a time. If I visit the Dr, I don't go to the grocery. If I have plans with friends in the evening, I make sure the day itself is quiet and low-key. I seldom schedule activities every day of the week, I like to leave a day between things for rest & recuperation.

If I'm careful with what I plan, I can usually manage without having to cancel plans. And if I do have to cancel, most people understand that sometimes we just get exhausted and need a break. Sometimes I do go ahead and say, "I have an illness (that doesn't really make me look sick), but sometimes it just exhausts me unexpectedly."

It seems to me that the hardest part is recognizing our own limitations and admitting that, yes, we have this illness and we can't always go-go-go like some people can. Once I got more comfortable with my illness myself, it became less difficult to share with others. Wasting my precious energy worrying about others being angry, gossiping, or not understanding is just self-defeating and not at all a good use of my time or energy!

Have you read "The Spoon Theory"? It's a good article to help others, especially your husband, understand that sometimes we just need to stop. /cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf

Best wishes,
Posted 4/10/2017 10:48 PM (GMT 0)
Thank you for the advise. I'll definitely try to limit my obligations when possible. I had never heard of "The Spoon Theory." Thank you for sharing that. I think it did a really good job of explaining how that works. How do you deal with those days where you just wake up and instantly feel exhausted? I'm not really sure how to limit work obligations. I don't have kids yet, but I'm nervous about how that'll play out when we do someday have kids.
Posted 4/10/2017 11:00 PM (GMT 0)
Also, I take Plaquinil. It was good for me for a few years, and it worked great. But doesn't seem to work as well for me as it used to. My fatigue and joints have been getting worse. I started taking fish oil in addition to my plaquinil, which definitely helps my joints, but I'm still having trouble with the fatigue. Do you have any medication suggestions for fatigue? Thank you!
Posted 4/11/2017 12:12 AM (GMT 0)
Many of us find that we simply can't work anymore - that's what happened to me. First I cut out everything else, leaving work as my only obligation. But then I couldn't keep up with even that, and had to cut back and cut back... until eventually I found myself on disability.

That being said, make sure you are eating as healthily as possible, getting as much deep restorative sleep as possible, and getting some moderate exercise. I find this helps give me energy for other things.

I don't know what your diagnosis is, what your symptoms are, what your treatment plan is, or what medications you are on, but in general when things start changing it's a good idea to check back in with your rheumatologist for a complete evaluation. Your fatigue may not even be related to Sjogren's!

But if you do have active auto-immune disease, there are a multitude of medications available. Maybe not specifically for fatigue, but to help with the things that are causing fatigue. Prednisone, Cellcept, Imuran, MTX, Benylsta, IVIG....
Posted 4/12/2017 9:02 PM (GMT 0)
Ok, thank you for the advise. I have primary Sjogren's disease. I just recently got a diagnosis after about 6 years of trying to figure it out. My rheumatologist made similar lifestyle suggestions. Do you ever have extreme fatigue starting from when you get up and lasting throughout the entire day? (even after getting good night's sleep). If so, do you have any thoughts/suggestions on that specifically? Also, just out of curiosity, do you have both Lupus and Sjogren's?
Posted 4/13/2017 3:35 AM (GMT 0)
Yes, I used to wake up feeling practically more tired than at bedtime the night before! You may need a sleep study to see what kind of sleep you are getting - it'll help make sure you are getting deep, restorative sleep. I thought I was sleeping soundly, and I thought the rheumy was crazy when he suggested a sleep aid. However, with 300 mg (a rather large dose) of Trazodone every night, I sleep more deeply and actually wake refreshed!

And yes, SLE Lupus is my primary disease, but I have secondary Sjogren's.
Posted 5/16/2017 11:48 PM (GMT 0)
I am sorry that you are so young with this disease. It is another situation totally when you are young and I sympathize with you. That has to be tough. I am older and I feel the same way you do about it. I resent it and don't want to have to use it as an excuse. However, sometimes, it comes in handy when you really don't want to do something. LOL...

You have to make sure to get to bed early at night. Make sure you don't have a sleep disorder. You might feel better if you took something to help you sleep. With us, it can't be anything that dries us out and that can limit some meds.

Don't overdo and overbook yourself, and slow down. Take rest breaks or mini naps if you have to.

You may find some help with supplements like CoQ10, ginseng, or an antidepressant.

If you find something, let us know! I am going through a real rough patch right now. For me, it might mean retirement.
Posted 9/12/2017 2:21 AM (GMT 0)
I read this and I'm crying. I feel the same way I work from home, so this helps, but I'm so tired. My husband wants to go, go, go. He gets frustrated that I don't want to go anywhere cuz I'm sore and tired. I hate to complain or even tell him, but I'm exhausted. I know I don't sleep well. My hubby has sleep apnea and wears a mask. It wakes me all the time. I get tingly hands that wake me too and I'm a light sleeper any strange noise wakes me. We've been married 34 years. He''s patient with me but I hate being so tired! Any suggestions?
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