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Posted 11/2/2007 1:31 PM (GMT 0)
Hi everyone,

I know I have talked about fatigue before.  I just want to reword my question.  When you are out of flare does your fatigue go away somewhat or are you going to be so extremely fatigued just as my daughter  is now forever. She is went down to 40 mg. of prednisone, her cyclophosamide was a couple of weeks ago and she is due for another infusion on November the 14th.  She was quite peppy when she first went of prednisone (now back to square one) which was really nice for her as fatigue almost dibilitated her before.  Also, does anyone know what is the longest flare, time wise.  Sarah has been in a flare for months.  Last night along with the fatigue, headaches she still has swollen joints even thought she has been on prednisone since May--and high doses  till recent.  Doctors told us when her joints are sore she is still flaring.

Thanks in advance.

Sharon 

Posted 11/2/2007 1:45 PM (GMT 0)
((((((((((Sharon and Daughter)))))))) Fatigue really robs you of life, doesn't it?? I'm so sorry your daughter is missing out on so much. You have some good questions, but we've found that each of us is quite different. I can tell you that my fatigue comes and goes (somewhat) with each flare. While I'm feeling well, I always try to engage in some mild physical activity (walking, light weights, toning, stretching, housework, etc.) making sure to pace myself so as not to cause a flare. It is thought that if we build our strength during our well times, we don't lose as much ground when we are sick. I actually had a flare that lasted about 15 months. Within that flare, I had ups and downs . . . but every time I tried to push myself to do more, I would end up worse again . . . so we need to be patient and let our bodies heal, while being careful not to just do nothing when we really could be a little active. It is a real dance we learn to do. Sometimes we can do only 5 minutes at a time (put in a load of clothes or start the dishes) and then rest. But, learning where that boundary is takes some trial and error. Hopefully you'll get more feedback from the others here. Blessings!
Posted 11/2/2007 3:37 PM (GMT 0)
Hi Sharon, I'm so sorry I know how much it hurts to see your children suffering. Like Rosie, I have been in a flare but the better part of a year before. Plaquenil has kind of moved me out of it after about 6 months. As for the steroids I can bounce off the wall on 20mg. if I'm not too sick but if I'm really don't 60mil. wouldn't get me out of bed. right now I managed to get my dishes soaking in the sink. I don't know how long it will take to get the first load done and I doubt I'll finish them all today. Normally it would take about 20 min. to do the dishes and straighten the kitchen. Not anymore. I have a pile of clothes on my dresser that I washed and couldn't hang up now they are all wrinkled! I have a good friend that has infusioned every 3 weeks. You'd think that would make her more peppy but it makes her more tired. It takes about 2 weeks for the fatique to go away so we have one week to do somthing between infusions and fatique. That's if I'm good at that time! The whole thing Stinks! It's not fair and for somone so young it's really cruel.
hang in there mom things can get better with the proper care people have been known to be symptom free for long periods of time. We usually tend to hold our breath and hope for as many good days as possible before we crash again.
Hugs
carol
Posted 11/2/2007 6:42 PM (GMT 0)

Thanks guys,

Everytime someone responds with kind words it actually brings tears to my eyes, like right now.  I think its just so hard to see her suffer.  I have my own issues, but I don't care because this was not meant to be.  She is young she should be out with friends having fun, going to school, have a boyfriend, I should be worrying about the normal stuff a mother should.  I do know I feel so close to her, and you never know how much you love someone till you almost loose them, or see them suffer

Sharon

Posted 11/2/2007 7:22 PM (GMT 0)
Sharon . . . YES it is hard . . . but she will become strong in other ways. Really important ways. It still hurts to see your child in pain or ill, but she will blossom in a way that will surprise you. Make sure and let her feel her way with this . . . don't stop her from doing things herself when she's up to it . . . she'll find a good balance and doing normal things, even chores, will help bring normalcy for her. There is a story about "bridges" which I will try to find and bump up for you/her . . . it is helpful. YES!! This is the best place to recharge your emotional batteries!! Great friends and always someone who will understand your pain. Some hot tea for you!! Blessings!
Posted 11/2/2007 7:36 PM (GMT 0)

Thanks,

One thing I am really grateful for she has a few really good friends they have taken her out for pumpkin carving, out for breakfast,movies I am so grateful for these teen that have seen her even through her worst.

I always have to remember that even though we can be negative sometimes I  reflect and think I am so grateful for the good outcomes as well.  And she has also had many good things like friends, thoughtful neighbours etc..  She wasn't driving when she had her seizures, we had quick care when she was seriously ill in July and August.  I have had so many Gods winks I call them that I could go on and on.  I still have her with us and that alone makes me realize that life if so short.  I think it has changed  how I think and react to others as well.  And a really appreciate the time you all have taken to give me encouragment.

Thanks Sharon

Posted 11/2/2007 11:09 PM (GMT 0)
Sharon, I'm sorry to hear how fatigues Sarah is. Even when I am not in a flare, I still have fatigue, it's just not as debilitating as it is when I am flaring. Prednisone can make a big difference for some people - it is probably what has helped most with my fatigue. Like some of the others have said, flares can last a long time, unfortunately. It's so good that your daughter has such wonderful friends and support because sometimes these illnesses can really test friendships and relationships. Hang in there. I know how hard it is to watch your child suffer. My son is almost done with a short burst of prednisone used to get him out of a flare of arthritis and I am dreading the inevitable return of joint pain and fatigue. (((((Hugs))))) for you and your daughter.
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