Lately I will randomly feel like I’m running a low grade fever (usually at night or when I’m trying to rest) but my hands and feet will still feel like ice cubes. I’m always either too hot or too cold or both. I haven’t had a comfortable body temperature for months now. I used to always be cold since I was a child but for the past few months my core will randomly run hot for a few hours then I’ll go back to being freezing again. Does anyone else have this issue??? I’m only 6 or so months into the real difficulties of my lupus and my body just seems to be going haywire. What are some weird symptoms everyone has had? I have also never gotten a butterfly rash from what I can think of. Am I the only one who doesn’t?
I do know what you mean by feeling like you are running a low grade fever. I get cold sweats and this makes me feel like I am running a small fever. My doc told me it is a side effect from the prendisone. Since I have been tapering down I have noticed they're not as bad. Make sure you mention this to your doc. Tons of hugs.
I did not know that was a side effect of prednisone. However I do not take prednisone on a regular basis. This is only my 2nd time on a week long dose, but I have been having the “hot flashes” for months now. I’m not sure what exactly it could be.
Is your face hot when you feel warm like that? Check your cheeks. I didn't even realize I was having a malar rash right at first... I just felt flushed and hot. Turned out, my flush WAS the rash. I've learned since then to feel it, sometimes even when it's not showing. My skin just feels heated from within across my cheekbones.
Also, fevers are one of the things my doc always asks about. If you are having frequent fevers, make sure your doc knows. If you can, keep track of how often you have them so you can be specific.
Either way, this is definitely something to communicate with your heumy about. He or she will want to know (or SHOULD want to know) about your varying symptoms, especially if they become frequent or troublesome. I totally sympathize with feeling like your body is going haywire, and wondering if something you are feeling is or isn't Lupus. Hang in there hon! ::hugs::
Yes, my face (and whole head) feels fairly warm/hot when I am having a "hot flash". A few times I have been able to check my cheeks during or soon after I get flushed and notice that the apples of my cheeks are a little flushed. Would that little bit be considered a malar rash? It has never been raised and now that I think back there have been a few times when the bridge of my nose and cheeks were itchy to no end. The redness in my cheeks typically go away after sometime when my body is able to cool back down. I never considered that the simple flush of redness could possibly be the rash, because it is usually small and blotchy, unlike the pictures I've seen online. I will have to bring it up to my doctor when I see her next month.
As for the "fevers" they are pretty much a daily issue and now as it has gotten warmer outside it has become a multiple times a day issue. I get it most whenever I am trying to rest/sleep or working overnight. When I am home to sleep at night, my boyfriend even says I go from an icebox to an oven throughout the night. Both extremes become so annoyingly uncomfortable, because it keeps me from getting the quality rest I desperately need. I meant to say something to my rheumy about it when I saw her last week, but there were so many other issues I forgot. I'll have to remember when on the phone with her going over bloodwork later this week. I have noticed that the "hot flashes" are typically when I start to feel my joints ache and swell. So I'm guessing it is simply the on and off inflammation.
Thanks for the support. I have really been alone in this whole ordeal mainly with not knowing what is "normal" and what is not. I have not known anyone else with lupus ever before this so it is all still very new to me. My one friend has discoid lupus, but I hate to keep bothering him with questions and venting. Thank you again.
::hugs:: It's all very confusing and overwhelming at first, you are not alone in feeling that way at all! May I suggest writing down your questions and symptoms somewhere so that you can have it on hand when you talk to your doctor. Often I tend to forget everything I wanted to say when I'm face to face with mine. (I'm terrible that way! I get flustered and don't want to bother him... silly me.) Having the items I want to discuss written down helps me to focus and remember what it was that was important enough to bring up. I actually have a little book that I keep on my desk and take to every appointment. It not only gives me a place to write down issues I want to talk about, but it gives me a place to write down what he tells me too, like medication names, suggested activities, etc.
And as a reassurance, my own malar rash has never been raised either. I tend to just get pink, and the skin feels feverish on the outside as well as on the inside. Unlike a normal flush, mine don't fade swiftly, but take a good deal of time to fade away. That's part of how I distinguish a normal blush or flush with the malar rash. My rehumy had me take pictures of these when they happened, and then show him on my next visit. If you can, it might help to have pictures to show yours the next time you go in. It might be enough for him or her to be able to say yes it is or no it isn't. Peace of mind either way would be a relief, I know! ::hugs again:: I'm glad you are here and able to talk with others who understand. It does help a lot to not feel so alone!
Thank you for the support Talencia. I started keeping a log of my symptoms this time last year in the beginning of my testing for a DX. Then I started feeling better last summer and stopped. It’s gotten worse since the super cold winter we’ve had. I’ll try to remember to start logging my symptoms again. The brain fog has definitely been hitting me hard.
As for taking pictures I never thought to do that. I will try to remember and get to taking them when I can. I’m glad I’m not the only one who has been confused about if They have the rash or not. The typical online symptoms seem to not even scratch the surface of what really goes on.
I get that symptom quite often too.
I would have to say that my most strange symptom is when my skin feels so irritated that if my feels like a million bugs are crawling under my skin erratically. I think it’s called ‘hyper sensation’. It Burns and is extremely sensitive to the point where It hurts to even wear clothes.
I’m happy to hear that I am not the only one with these weird body temperature fluctuations. PurpleDaisy, I have had a few times of the “bug crawling” feeling. It turns from extremely itchy to a painful burning feeling. I hope we all can find some relief soon.