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Posted 4/20/2007 9:30 AM (GMT 0)
I just wanted to get some input on a couple of things. First do you take your temperature everyday? how many times. do you usually have a slight fever?

I read that you should take your temp. at least three times I day. So I do and I always have a very slight fever. Before I got sick my normal temp was usually about 97.5 . now it runs about 99.5 -99.8. Since for 49 years it was always a bit low I can only assume it's the lupus. What causes that to happen?

Also do you rest or take naps? I'm lucky if I can go out and about for more than two or three hours before I have to go home and take a nap. I don't know how you people with full time jobs and children can do this. anyway I was just curious. also this has nothing to do with it but for the past 2 nights I've woke up at about 3 am. it's 4:30 now. do anyof you have insomnia? I take enough night pills to put a horse to sleep.

thanks

love ya

carol

Posted 4/20/2007 1:20 PM (GMT 0)
Carol, my temp is a lot like yours. Before getting lupus I always ran a lower than normal temp (about 97.7) and still do when I don't have a fever. After getting lupus and before I started on prednisone, I ran a fever almost everyday ranging from 99-100.5 and sometimes higher. SInce starting prednisone lat last summer I have less frequent fevers, but can usually tell by how I am feeling when I have a fever. During a flare I almost always get low grade fevers. I think it was Lynnwood who explained some of the lupus fever to me. A lot of it seems to be due to inflammation in the body caused by lupus. I know that both you and I have also experienced very low temps every so often and I have no idea why that happends. A couple of times when I have been really sick and expected a fever, my temp has been down in the 95's or 96's. As far as naps go, my answer is yes. Again, before I started prednisone I couldn't get through a day without a nap and now I can manage some days, but then I'm exhausted by about 4 or 5, so I still take almost daily naps. I honestly don't know how I worked as long as I did - fortunately it was part time. You are right that it is hard dealing with all of this with little kids, but it was even harder when they were younger. When I frst got sick, my daughter was only 2, so it was really hard then. Now both kids are in school and I'm not working so I can get some rest during the day. I think a lot of us have insomnia. There is no way I could sleep without meds and even then I have some trouble sometimes. If youre having trouble sleeping even with heavy duty meds you might want to ask about having a sleep study. I know you are probably sick of doctor appointments, but you might get some answers regarding your insomnia. I hope you were able to go back to sleep this morning and get some rest. Take care
Posted 4/20/2007 1:25 PM (GMT 0)
i often run fevers in the 99.5 range. i know it is low, but i think it makes me wear out easier than others. i take it when i notice something being weird. new skin rash - take it. pain - take it. it almost always goes together. i am not a big napper. i have to be really sick to sleep during the day, BUT i will go to sleep early or sleep late. i need a good 9 hours or 10 each night. but after work and dinner i am curled up on the sofa with my eating pad, cat (all 3!), and if i'm lucky my hubby-to-be! i really hate that this has turned me into a couch potato. i AM however, on the prowl for a used elliptical. i have some steroid weight to lose and since it is zero impact on the joints i think it will work well. before i was sick i worked out and used one a lot and had good results. i hope that once i get my body moving more that i will have a little more umph in my daily routine.
Posted 4/20/2007 4:05 PM (GMT 0)
Hi All,

I'm not into taking my temperature every day. I just kept track the one time I had my major flare and it yo-yo'd from quite high to lower than normal.

I'm an napper. I'll nap anyday if I can find the time. But then I also have trouble sleeping. My boyfriend says that I stop breathing and jerk myself awake and that I thrash around a lot. I have spoken to my PCP and will be doing the sleep study thing (next opening not until June so i have to wait). In the meantime, I have AmbienCR to take but I find it doesn't help very much. It seems to help to do some mild exercise to tire myself out but I don't have the energy to do that much (catch 22 here). I find I have to stay in bed at least 9 hours to eventually get enough sleep to make it through the next day. I work "full time" as a college professor (no time clock to punch, just work to get done) and I've been able to hold onto my job.

Jessica -- I have nine cats and there is nothing so good as a nap with cats on you spreading sleep waves around -- got to love it!

Stay Strong Everyone,
Sue
Posted 4/20/2007 4:54 PM (GMT 0)
Okie, my temp fluctuates from low to slightly high depending on how I feel. There is days all I can do is nap. Sometimes I'll want to get out & as far as I get is out of shower & have to take nap. I have allways liked what I call power naps but there is days it is ridiculous (4hrs at a time)! If I do make it somewhere within a couple of hrs I'm ready to go home & nap. I have been dx'ed with tumid lupus & I am suposed to be more sun sensative than others, I have noticed if it is sunny I am tired & not feeling well. I love gloomy days & they are my better days. I also am very heat sensative. I'm with you, I don't know how the others do it (work), I have allways worked up until a yr ago. There is no way I could now & it is very depressing.
Posted 4/20/2007 7:27 PM (GMT 0)
I don't take temp everyday, except when I am flaring, and when I know I have a fever. I occassionally will have a continuing fever (usually more than a week), and this is usually the time of flaring. By increasing Prednisole and injecting something like Prednisole (forgot what the name called), my fever would go down. This often happened to me few years ago.
If you do not have kidney or URI infection or any other kind of infection, then it is usually the lupus. Lupus will cause a low grade fever. You need to tell you doc about this. And it is good to keep record and temp it for three times a day, and write down the temp.
I don't usually take a nap unless I am extremely tired.
Posted 4/20/2007 7:37 PM (GMT 0)
I used to take my temp everyday as I was instructed to do so for 2 months/3 times a day by my rheumy. That was so that I could find out my regular body temp (which is ~97.8) so I could see what a "true" fever is for me. That was something I learned that I never knew. I always thought that there is a standard temperature for everyone that explains when you have a fever. When I'm flaring, I also have a low grade fever anywhere between 99.2-101. Anything above that, my doc wants me to call. Keeping an eye on your temp is a good idea because what constitutes a simple fever for someone could be dangerous for us.
Posted 4/20/2007 10:19 PM (GMT 0)
Hi hippi, a 2 year old? wow, I guess God knew what he was doing with me cuz I would never have made it. bless your heart. I did have a sleep study done. I was diagnosed with sleep apnea. My hubby used to shake me and wake me up just enough to get me breathing again but not enough to wake me up. Than they had me come back in for a test with that mask on. I knew right than I would never use it. So I didn't go into it any further. It's just been the past couple days I've had trouble sleeping. It's probably just something on my mind.

Jessica let me know how the eliptical goes. I know I need to exercise my muscles. I don't think I could sleep 10 hours straight but I think I probably sleep 12 or more off and on. It's usally when I'm watching something on t.v. and I wake up after it's over. so I miss the end of it! I used to have 3 cats too. Now my dog wants to play all the time. I kind of mess having the lazy cats around.

Sue, some how I didn't picture you with 9 cats LOL. or that you took naps. I always thought of you as a power house. You've been holding back on me in your emails. Good luck with the sleep test. I really hate waiting so long to get a test done. Than it takes forever for the results!

love ya

Omega, no as far as i know I don't have any infections but I run a fever every single day. at some point in the day anyway.I havn't been writing it down just taking it. I guess I should do that and see if I can find a pattern. thanks hun

hugs

 Hey Des, that is interesting. I never knew that either. I just figured 98.6 was normal. Thanks for the info. Ya learn somthing new everyday.

Thanks everyone. I appreiate all your responses. I hope you have a good evening

love

carol

Posted 4/20/2007 11:27 PM (GMT 0)
Hi everyone!!! Cats and Lupus must go hand in hand - I too have 3 cats and there is always one glued to me... lol
You know - my rheumy NEVER said to take my temp but I know that I have one - often - I can feel them. The other thing I never really thought about were my naps... my husband has a nap after work practically every day and for the last 4-5 years, I have too but honestly, I never connected it to the Lupus?? I always thought it was because I went to bed too late but now that I'm really thinking about it, I can get 6-7-8-9 hours of sleep at night and then I'll still sleep 2-3 hours after work too.. lol My husband and I decided that we are going to take the summer off of all of our activities - we both haven't been feeling so peppy lately so we're anxious to see how we feel. I don't get up with him anymore (5am wakeup!!) unless I have a busy day scheduled at work. I still work fulltime but at least I have my own business so if I'm really not feeling the greatest, I can take some time off and rest.
I'm SO glad I signed up - things are making WAY more sense now... thank you everyone for sharing!!!!
Posted 4/21/2007 1:20 AM (GMT 0)
Hi sandspoker, I know what ya mean. I have learned so much here. My doctors seem to run through things so fast and never give me all the facts. Plus I don't always think of things when I'm there. I'm glad you are getting somthing out of the group. Oh I have a dog. LOL

hugs

carol

Posted 4/21/2007 2:14 AM (GMT 0)

Hi Carol - I was just telling my g/f - I don't feel so "alone" now.  Even though my sister has lupus, I don't really talk to her much (and when we do - its never about that)... other than her - I don't talk to anyone else with the condition.  I am newly diagnosed too.  Do you have sensitivity to light?  It's not something I've seen anyone mention here but I find bright lights SO painful - I wear sunglasses even on darker days.  I guess for me, its having people understand the fatigue that goes along with having lupus.  I just have no "get up and go" - often.  My husband said that I wasn't the greatest housekeeper the other day and it made me SO angry...  I run my own business and I'm tired at the end of the day.  I have resorted to buying a lot of premade meals... lol... he quite likes some of them!!!

How do you (or anyone else) cope with work and housework etc - I was actually talking about getting a housekeeper today but not sure!!!

Posted 4/21/2007 3:19 AM (GMT 0)
sandspoker, Yes I have some days worse than others when it comes to the light sensitivity. There are many of us here who have that. I wear very dark sunglasses or I'll get a headache. I'm not married and my kids are grown so I eat what I want. The only person that gets down on me about the house is me. lol. I'm in awe of the people here who juggle jobs kids and homes. I used to have someone come in once a week and clean the bathrooms and mop the floors and vacume. Its amazing how much that helped. all I really had to do was keep up the dishes and my laundry. I didn't have a lot of traffic come through though. If I could afford it now i would have someone come in but funds are tight so I do what I can. It was really weird for me when i first had somone come in because I felt like a lazy bum or somthing. But when it took me 5 tries to mop the kitchen floor I just decided it wasn't worth it. I buy micro meals and somtimes I use my crock pot. that helps. If my hubby ever said that I think he'd have a mop over his head! LOL. They just don't understand. Plus trying to do more than you are able just makes things worse. It's an adjustment for everyone. Hopfully your hubby will start to understand. Maybe he needs to talk to your rheumy with you so he can get some idea of what this disease does to your body.

I'm glad you don't feel so alone anymore. This is a great place.I met so many wonderful supportive people here.

take care

((((hugs)))))

carol 

Posted 4/22/2007 2:19 AM (GMT 0)
I feel like an old woman sometimes with all my "health chores"... wake up, take temp, take blood pressure, look at Amsler Grid, take meds then yoga. Well, I guess the yoga isnt old ladyish. LOL!

My temp is usually normal but when it is even slightly elevated I feel like absolute garbage. Since I have been diagnosed I have had an elevated temp only a few times. I can almost tell my temp is high before I even take it... I get very dizzy and "buzzy" and I just dont feel right. I actually had more fevers before my diagnosis so maybe this blasted medicine is doing something right.

I have terrible insomnia but I dont think that is lupus related. I have been that way since childhood. My maternal grandmother was a clinical insomniac. My mother is also a true night owl.

I am not a napper, I never have been. I cant sleep when it is light out. It sounds odd I know. I also tend to feel really sick when I nap during the day. It throws my whole body off or something. I will sometimes take a 30 min. time out during the day but I dont lay down. I usually just sit on the sofa or the easy chair in my office and just chill with my iPod and play with my pug. I am fortunate to be self employed.. I can work and take breaks on my own schedule and that is helpful.
Posted 4/22/2007 3:35 AM (GMT 0)
Hi Carol:

I just wanted to let you know I've been taking my temp 3 times a day since September. I've been having issues with running temps as high as 102. My infectious disease doctor is trying to make sure I don't have an infection in my body somewhere. They found that I had a bowel infection and that could be causing my temps. However, my infectious disease doctor truly believes that I'm running temps because of my lupus.

I usually run at 97.2, so when I see the temp at 99.5 I consider it it a low grade temp. Of course, offically a low grade temp is considered 100.5 and according to one doctor a fever is anything over 101.5. My rheumy and internist want to know if my temp is above 101.0 anything below that they put it down to my lupus. Of course I nap most of the day, I'm kinda like a cat LOL. I've got extreme fatigue and I sleep all the time, some of that is due to my MDS though. The MDS cause you to sleep a lot, my body isn't making enough red blood cells to support my body so the body shuts itself down and I sleep a lot.

Hope, I've been of some help and I hope that you're doing better and feeling good.

Love,
Barb
Posted 4/22/2007 12:54 PM (GMT 0)

Ooops, I never, ever take my temp.  I have never been asked to.   

I do know that with lupus patients especially anything over 99.6 that doesn't have an "obvious" cause will suggest an infection of inflammatory thing going on.

Some lupus patients can also have a normal temp of betwen 96 and 97 anyway, and what is normal for some people can be a fever for others.  Usually a low grade fever is not dangerous, but can cause your pulse to rise and this reduces your stamina.  

I was always told that an hour or two nap in the afternoon was a really good thing.  In all fairness though, how many of us can do this ?  Not many I am sure.  If you can manage it though, sit and be quiet when you can even for a 10 minute break.  Hard I know, I am always thinking of what needs doing and what I need to do tomorrow.  Just trying to relax your body can do you good.

Take care

goldenwings  yeah

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