View Full Version : Tired of 7 month relapse
01-03-2007, 08:00 PM
I am having a bad day, tired of being in a relapse. Have had SLE for 20+ yrs, usually mild symptoms. This relapse had heart complications, keep getting infections, have to stop steroids to fight infections. Its not so much that things are really bad, (been worse), just that my ability to cope is really low. I am so tired of being sick, not having anyone I want to talk to about it, (try not to complain). How can relapses last this long? Heart problems are starting up again, but I'm trying to wait til next appointment. My cognitive abilities are bad right now, I am absentminded and trying to keep track of things is hard. I know I'm feeling extra sorry for myself, but I want my life back, I am so frustrated and I don't even know what/how to make things better. I have 3 kids, 2 in college, 1 at home (14), and I did my best to make holidays great for them. I have a wonderful boyfriend who I love with all my heart and is so good to/4 me. I have a stress-free job, work 2 12 hour days, and one 4 hour day per week, (4 days off!!!!yea!!!!) So, I have everything but my health going for me. Any tips on getting more energy? (I know exercise, but w/heart symps, can't right now, although took walk tonight and felt good, also my job is physical). I think I need to spend more time/resources trying to get better, go to support group meetings. God Bless all out there, and thanks for venting
01-04-2007, 07:58 AM
I'm sorry you are having such a difficult time - it sounds like there's a lot going on right now. But if you've had heart involvement with this flare, waiting to see your doctor might not be such a good idea. Heart complications usually need treatment - the sooner the better. Are you on plaquenil - sometimes it helps the fatigue. I also find that when I'm in a flare, I don't eat as well as I should, so extra b-complex vitamins, calcium and vitamin c help. The brain fog is a persistent problem - I use post-it notes constantly. Hopefully this will get better as your flare starts to subside. Have ypur doctors recommended any changes in your treatment to get the flare under control?
01-04-2007, 10:21 PM
thanks 4 your advice, and listening to me while I vented. I think I'll find and go to support groups 'cause I don't want to "go it alone" anymore. I will be much better off doing positive things to keep my spirits up. Right now, I feel desparate, and I don't like feeling this way---like I'm disconnected from everything and everyone. what makes it worse is that i know depression makes us sicker, but my resources/reserves are low. i need to borrow some strength. thanks 4 lending me yours
(sorry 'bout typing, i injured my hand)
01-05-2007, 07:43 AM
Kelly, have you talked to your doctor about your depression and stress? It is a very common thing with lupus, not only because of the stress of the illness, but also because lupus affects the way the brain functions, and the levels of the neurotransmitters that affect mood and behavior. Meditation, yoga, counseling - there are all kinds of things that can help, but sometimes antidepressants are helpful to normalize the brain chemistry. Some antidepressants like prozac have the additional benefit of helping fatigue, and there are new anti-depressants that may help pain too, So please don't be hesitant to bring this up to your doctor - lupus affects our brains as well as our bodies, and the mental symptoms like depression and brain fog can be just as disabling as the physical symptoms like joint pain.