In the past month or two, I've been passing out and nearly passing out. I HATE that feeling, but nothing adverse seems to happen before or after. I feel drained, but otherwise my same Lupie self.
Of course I've had some pretty nasty flares as well, but they seems unrelated. I've been having a lot more trouble walking and moving around. Taking a basic shower (no shaving or washing my hair) takes up to 4 spoons! I'm absolutely exhausted by it.
Last night was one of my more scary nights. I kept having recurring sleep paralysis (I suppose) - I would just drift into a light sleep (sometimes a bit of a dream, sometimes not) and I would feel unable to breathe. I was half conscious and kept telling myself to wake up. I was able to each time, but I'd feel something like a seizure happen before I could actually open my eyes or begin to breathe again. I'd gasp for air and try to calm down.
This happened no less that 4 times in the space of 2 hours last night. (I've had sleep studies and no apnea.. I do snore, but it wasn't really a hindrance to my breathing.)
On the same note my foggy brain keeps treating any dreams I have as if they are memories. It's hard to explain, but bizarre as they are, they still consume a lot of my thinking and memory. Is this normal...am i finally going crazy?
My hands weaken after writing 2 short sentences. I'm in near constant pain and it takes SO much energy to just exist. My kids are trying to understand (they are 11 and 13) but I know all they see is me in bed ALL the time.
Has anyone else had any of these issues?
I'm trying to get in to see my doc, I also want to discuss the possibility of Cushings Disease with him on top of the Lupus.
Any advice would be greatly appreciated.
I experience some similar things. The weird, realistic dreams are constant. I wake up experiencing the feelings I had in the dreams and it’s creepy. When I go back to sleep the next night, as I’m drifting off, the previous night’s dream-feelings return. I figured it was one of the meds. Maybe it’s just lupus brain.
The exhaustion never goes away, but it gets better and worse. Some days I actually have some energy and others I’ll spend 18 of 24 hours asleep.
My pain is pretty well-controlled with plaquenil, Tylenol and aspirin - all Max doses. If I get breakthrough pain I have heavier stuff around like nambumetol and tramadol. Ask your doc about better pain control and if necessary seek out a pain specialist.
The nearly passing out is scary. That’s worth a call to the doc if you can’t get in right away.
Let me preface this by saying that I am not a doctor. I am, however, someone with Lupus who knows exactly what you mean by "nearly passing out". In my case, it's a low blood pressure issue. The next time it happens, go to the emergency room. You need blood tests to find the source of the problem.
In regards to passing out I've had fainting spells since middle school and still do but mostly I know the signs by now so when I feel like I'm going to pass out I sit or lay down. There could be many causes for fainting- diet, sleep, stress, medication, or some underlying condition. I don't necessarily think that all symptoms connect together into one illness and by that I mean there could be something else going on but I do think whenever one system is out of whack it impacts other things in the body or makes another condition worse.
Usually when my lupus symptoms are really bad other things like feeling faint, dizzy, lightheaded tend to bother me as well. I also get a lot of infections especially upper respiratory so that makes me feel dizzy. I would definitely ask you doctor. I hope you find some answers and feel better :)
It can be the side effect of the meds we taking .I hope we fell better for the sake of our kids.I am in the same situation. Praying for you.
My cns lupus makes me feel like I will pass out. It even happens when I am in bed laying down. Showers are very difficult for me also. It is the standing in one place for a period of time that is hard. I now take more baths. My cns lupus also played games with my mind. I would be watching tv and think I was on the show. Make sure you speak with your doc. There could be so many causes for what you are experiencing. If you have been on prednisone your doc should have been watching you for signs of Cushings. Remember your not going crazy, Lupus can just make you feel that way. Feel better.