Lupus Support Group

Hello, I am new on this site and I was wondering if anyone has any suggestions for dealing with the fatigue from Lupus. I was diagnosed 5 years ago, I take plaquenil daily and of course the prednisone when I'm having a flare. The prednisone does help give me a boost, I take it when I travel twice a year, but I'm never on it very long. I'm wondering if there are any suggestions to help with the fatigue? I have talked to my doctor about other meds. but was told the other drugs used to treat Lupus are for more severe cases than myself. I just want to be able to get on a plane and travel for 5 or 6 hours to see my grandson without feeling like I'm at deaths door! And it sure would be nice to have enough energy to go to a ball game.

Thanks for any help or suggestions, Barb

Hello again -

I have a schedule, routine, that I try to follow precisely. Maybe a few times in a year I'll deviate with something spontaneous. I also try to continue to exercise at whatever capacity I am able. I work out of the house which allows me to live on a 24 hour clock - so I am able to rest whenever I want and work the other times - My kid has long moved out so I have the added benefit of retired parenthood. Also I don't consume any meats. For me and my experiences this takes a huge chunk out of the fatigue you speak of. If I am really sick and can't move I just stay in bed until it's over. I've learned too many times getting up and trying to function doesn't make it any better.

Everyone here will include, as I will now - experiment and see what works for you; we are all different and each person responds differently to different efforts and campaigns.

I'm glad you joined - I was the same way April 2010 - never had talked to anyone about it.

Ray

Hi and welcome to this fantastic support site, you will meet some wonderful, caring and compassionate members here. Ray is right, we all deal with our Lupus in our own way and fatigue is one of the biggest issues we all have. I am blessed as I work from home so most days I lay down at 1 pm and take a nap but if I can't sleep at least I can rest for a few hours. I think you just need to find what works best for you. I wish you well.

Eva

@ Eva and Ray, thanks for your input. I KNOW I don't exercise enough, my doctor has told me the best thing for the fatique is exercise. I am also lucky enough to be at home, retired from the work force so I can lay down to sleep or just rest when I need to. I just get so frustrated with having to pick and choose my battles, limiting nearly all my activities to about 4 hours. It took me a long time to learn to say NO. You'd think after 5 years of dealing with this I'd get over it. I have been eating meat for 56 years, that would be a difficult one for me to give up, but I'm willing to give it a try if it means more quality time with my grandchildren.

Thanks, Barb

That's alright to say no - even though you don't like saying that. I also would like to add, the more I think about what I'm not able to do, the worse I seem to get. If I stay positive for what I did do, show mercy on myself, and not dwell on what I think I should be able to do things seem to go a little smoother. Again, sharing what works for me.

Ray

I think it's amazing that you get on a plane twice a year. I used to travel all the time, all over this world, until diagnosis. It's almost a year now and I still have absolutely no desire to travel by plane. Maybe it's the two-year old, TSA, all the hassles, but I just can't imagine it. It wears me out to think about it. I hope I get back to a place where I feel OK to travel again. As for the fatigue, when it hits, I respect it, I kind of have no choice, and just pass out/check out for a little while. When it's not there, I am proud of all that I am able to do. People may think that I have lowered my standards for myself, or lessened my ambitions in life, but you know what, I still work full-time, I parent my daughter, and that's a good day. No complaints. Not even close to where I thought I'd be in my life at this time, but grateful nonetheless.

Oh boy Barb. I hear you. It is 5-6 hours by plane to go home (Alaska) and see my family, including my beloved Grandson. Traveling has always been something I loved to fantasize about doing... Until I moved here and actually have to do it. It is horrible on me. I am in agony after the f irt hour. I take the medicines that help make it more comfortable. The flight attendants are always understanding of leg problems and will allow you (when they are able) to allow you stand for longer periods in their galley. That helps for me. Also drinking lots of water helps because flying will dehydrate you which contributes to muscle pain. I hope that helps with flying a little bit. I will go home as much as I possibly can no matter what but I do pay for it. As far as the fatigue goes, I have seen this subject come up here time after time. The best advice I've gotten is mentioned above. Denying that you are tired and trying to work through it never pays off. If you are tired, sleep. I'm sorry but sometimes that means for days.

This is hard for me too but I'm getting too tired to fight it and it's always counter productive. Peace.. Sonja