Oh yes. Fatigue is very real with this disease!
Mary Ann

Thanks. Its sometimes scary how fatigued I get everyday. Ill have to mention it to my Rheumy.

I deal with major fatigue and am currently going through a major flareup. I have to hide this from my job, which is getting harder and harder to do. I rest without guilt every chance I get when I'm at home. Keep the faith that the flares do not last forever. I didn't respond well to the Paquenil, but that doesn't mean that others haven't had success. I'm new to the group. I think it's so important to have people that understand this rare disease. Hoping to become a resource and have people to lean on.

Your right! It is important to have understanding people. My coworkers and family, including my husband, dont understand and havent even asked what MCTD is. When I'm not feeling well they just think of it as another virus that everyone gets and then its gone. We have to deal with this for the rest of our lives. I dont think people know the magnitude of that considering alot of us are still young or younger. Thanks for replying back. Its so nice to have other people listen.

Extreme fatigue for me here. But I've been dealing with awful stress for several months due to my dad being terminal with stage iv metastatic pancreatic cancer in lungs and bones and my mom being crazy and not caring for him and her refusing hospice despite 2 hospitals, 2 rehabs and at least 10 doctors recommending hospice.

Extreme fatigue here too, no nausea but no appetite. I'm also on Vitamin D, just started a few weeks ago when I was diagnosed. I have had a good day today but for weeks before that it seemed like every day I felt even more tired than the day before.

I have had periods of strong fatigue, yes, though it falls short of extreme-- it's hard to move or get out of bed, but once I'm up for 45 minutes, I'm okay. Or I just feel like I'm going to fall asleep at work, but it never lasts more than 45 minutes to three hours (at the worst.)

One thing I've learned to look at is, how WELL am I sleeping? Sometimes I tell myself I got 7.5 hours of sleep and wonder why I have to crash for an hour at the office in the afternoon (which fortunately, being self-employed, I can do.)

But when I look back on those days, I realize that I got 7.5 hours of really BAD sleep, usually due to discomfort-- can't get into a comfortable position, ear is in pain just from lying on a pillow, etc.-- or sometimes due to some other factor like late hours, old dog needing to go our and pee several times during the night, whatever.

On the days when I actually sleep right, which requires the right timing of medications, the right amount of exercise, and going to bed at a reasonable hour, I'm not nearly as wiped out. I can get by with 20 minutes of meditation in the afternoon... open my eyes and I'm ready to go.

New2, I know how stressful elder care is, both of my parents had long illnesses, 5 years each sequentially = 10 years total. I really had to learn to pace myself and to turn things over to social workers, do what I could from a distance-- which was still a lot. (Managing finances, coordinating home care, finding a group home/nursing home, etc.) During the visits, I took a lot of breaks.

New, the periods of low appetite are a real issue for me as well. I just use mechanical eating-- like, I get through 65% of a meal sometimes, and just force myself to finish it. It's not that terrible once you get used to it, it's just... weird. But that's what I have to do or I lose too much weight, particularly when I exercise, and if I don't exercise, I lose too much mobility and exercise.

Thanks very much. I agree, it feels weird. I have been pushing myself to eat at least some protein. I have not had time yet to really focus on switching to a more healthy diet with healthy foods in the house, but just getting some food in me to try to avoid fatigue has helped. Ate some chicken soup for dinner tonight and just rushed it to get through it. Chicken nuggets from Chick-fil-A, my favorite, for lunch. No flavor. Yes, so weird.