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Posted 7/18/2011 2:21 AM (GMT 0)
After reading several posts on here, it seems that fatigue affects people to different degrees, but that most people "do" suffer from fatigue.  This is one of my biggest struggles right now.  Of course, since I don't have a definate diagnosis, I don't have any medications for it right now. 

I was taking provigil for fatigue that doctors associated with my diagnosed sleep disorder and nocturnal seizures.  I am out now, because I was trying to see if i could survive without it - $$$$... but I will be getting a new order this week after not being able to do anything this weekend.  Lifting a pot off the stove, I thought I was going to drop it.  I feel like crying at the thought of having to clean my house, or do any physical activity.

How do you deal with fatigue?  Does anything help?  It seems that exercise helps some people, and some can't manage the strength to exercise???  I have 4 children, and my husband works 2 jobs.  I also homeschool.  I am terrified at the thought of my fatigue becoming worse!!  I can "deal" with my physical symptoms (at least so far) but the fatigue is kicking my butt!!!  Suggestions?? 

Posted 7/18/2011 2:44 AM (GMT 0)
See if you can get on plaquenil. It helps the fatigue.

I understand the fatigue spells. Before I started the plaquenil I would get so fatigue that I couldn't lift my arms. I still get fatigued but it's not as bad. I've only been on plaquenil for five weeks so I'm hoping that I will feel even more energy by 2 months and each month further on.

Do you have a positive ANA pattern? Have you been to see a rheumotologist?
Posted 7/18/2011 11:37 AM (GMT 0)
I would also also asked to get your blood counts checked and iron checked. Anemia can make one feel like they have no enegry at all!!!
Posted 7/18/2011 12:45 PM (GMT 0)
If I don't take Vitamin D, I notice fatigue creepinng in after a week. Lupus universally affects vitamin D processing by the body. Try it and see if you don't feel much less tired. Ask your doc first of course. I hv good insurace, but the blood test for vit d costs
me $60...
Posted 7/18/2011 3:34 PM (GMT 0)
My ANA is 1:640, homogonous. It was taken back in October. My primary doctor ordered it and didn't call to tell me about it. I found out when I requested a copy of my labs a few weeks ago. I am waiting on my ANA to come back from bloodwork taken last Thursday. My red blood cells are low, both from last October and from this past Thursday. My vitamin D was on the lower end of normal back in October, and it wasn't repeated this time. I think I was taking Vitamin D supplements when that test was taken.

Will taking iron help my low red blood cell count?? I know it helps with low hemoglogin or hematocrit, but don't know if it would help with low RBC??

I will get some vitamin D today as well.

I am also going to try to get an appt with a rheumatologist... with or without my primary's help.

So, do you all feel that you have the energy to do what you need to do on most days? I think this is my biggest concern right now. Thanks for all your help and info :)
Posted 7/18/2011 3:51 PM (GMT 0)
Energy is the first thing to go when I am flaring. While you wait to see a Dr, I can only suggest going back to the basics -- those days of 6 hr nights, skipping meals or eating poorly -- your body can't deal with that anymore.

Basics to try and focus on - 8 hours of deep restorative sleep - regular meals of fairly healthy substance (protein for energy!, avoid energy drinks, etc based on sugar - the rebound isn't worth it, a good multivitamin) -- mild exercise of 20 minutes 3x weekly. A slow stroll will do it.

I had to adjust my life drastically to lower energy-robbing stress and learn not to expect as much from my body.
Posted 7/18/2011 9:30 PM (GMT 0)
Scooping out two litter boxes made me break into a sweat and get weak the other day during a flare. I just try to avoid stressful things during a flare.
Posted 7/19/2011 5:52 PM (GMT 0)
This is so helpful for me. I am in that "undifferentiated" place so I often think it is all in my head! I have always been very active and beat myself up when I don't have the energy to do simple things. Some days I can run 4 miles and some days I can't do a load of laundry. It has been close to 2 years that I have been up and down and now seem to have more days of fatigue. I have been on Plaquenil and quinacrine which were a great help in the beginning but now don't seem to help at all!
I have 2 small kids at home that I want to play with and just don't have the energy. I am so frustrated and feel so alone!
Posted 7/19/2011 11:04 PM (GMT 0)
Yes, this has been helpful to me too. Like you babs1 - I have children that I want to play with and yet some days (more often than not) I don't have the energy to even do what I feel like I NEED to do. I have been a medical foster parent for 14 years, and after the adoption of our foster son is complete in a few months, I am calling it quits because I just can't do it anymore. It just takes too much out of me. I am determined to do the best that I can! Some days that may mean that I feel like playing with them, and some days it may just be the essentials; but I will do whatever I can to help me be the best I can be. I started taking folic acid and B12. I want to resume my multivitamin, but it makes me nauseas, so I am waiting on that for right now. I am paying more attention to my diet, exercise, and lifestyle. I am learning from everyone, as well as doing research. I think stress plays a big part for me, I am working on that as well. :)
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