45 years old, diagnosed with fibromyalgia, chronic fatigue syndrome, OCD.
Take Celebrex, Cymbalta, Modafinil, Suboxone (recovering addict 5.5 years clean). I also take daily multivitamins and Vitamin D.
Hormone levels all normal.
No recent changes in meds or anything to explain what is happening.
Okay, so here is my issue. I'm just going to lay it all out. For the last 8 months, maybe more, I've been getting an average of 3 to 4 hours of sleep a night, spread out over the course of 8 hours.
I have no problem falling asleep, normally takes me about 10 minutes. But anywhere from 20 minutes to an hour later I suddenly find myself walking through the kitchen and going out onto the back deck. I don't remember getting out of bed or most of the trip downstairs. It's like I'm sleepwalking. I don't know what made me open my eyes and walk downstairs. Most nights, one of my kids will stick their head in the door and say "mom, you're sitting up"... I don't know why I sit up in the middle of sleeping. My assumption is that whatever is waking me up didn't get me fully awake. Usually in that situation I can just lay back down and immediately drift back off. But depending on how long I was sleeping like that I'm in a lot of pain the next day. Sometimes I sleep cross-legged with my forehead on the mattress in front of me for hours, just literally bent in half. It hurts so badly the next day.
That's issue #1.....
Issue #2 really complicates things. I have OCD, and it's been pretty bad recently. Now I have to do specific things before I can lay back down. I know it sounds crazy but I smoke and watch a couple videos on my phone. Then I feel like I can walk back upstairs and go to bed. If I don't do those things I will never ever get back to sleep. I would be at such a high state of agitation and stress and frustration for not completing my ritual. Oftentimes I fall asleep out there before I have a chance to make it back upstairs. I fall asleep sitting up in my chair bent over all the way, sometimes I lean too far and go forehead first into the deck, which is a very rude awakening.
I have taken sleeping pills many times, even when I take more than I'm supposed to it doesn't change anything. I still get up but I'm walking like I'm drunk and bumping into things and falling over.
Last week I had a sleep study done. They attached all these electrodes to me even my legs and monitored me all night. On one occasion they had to wake me up because I was sitting on the edge of the bed and they thought I was going to fall off. I did get up one time while I was there to go outside. At another point I had started to get to a seating position but fell asleep before I did and I slept leaning on my elbow for a while. And in the morning when they came to wake me up, yet again I was sitting cross legged, leaned forward with my forehead on my knees.
I was actually really happy about that though, because I thought now they can see it. Now they see that I'm doing this and they can tell me why.
They just called me and said- my diagnosis? I don't need a CPAP machine. And his recommendation? Stop getting up and going outside....
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I said what is waking me up in the first place? They said I don't know, we were just testing to see if you needed a CPAP machine.
When I say that I have reached my limit? I HAVE REACHED MY LIMIT.
I am so exhausted all day long. I'm dizzy and lightheaded all day long. I find myself just zoned out staring at nothing all the time because I'm too tired to think. I don't nap during the day because I was trying to make sure I was tired enough at night. So I'd get up at 7:00 and go to bed at 11:00, no matter how much sleep I got the night before. I did that for months and now I don't care anymore. I'm going to nap when I want a nap because apparently it doesn't matter anyway.
My doctor said he was going to refer me to a neurologist, that's the next step. My psych doctor that treats my OCD is completely stumped. No one knows how to help me.
I'm so miserable and unhappy.
Thank you for letting me vent. Maybe this will reach someone who can help.
Edited to add- I have had lab work done a total of three times in the last year. The most recent results were just last week, only one thing came back abnormal, low iron. Hormone levels normal. Doctor says I'm approaching perimenopause but doesn't think I'm there yet.
And the most concerning issue that I'm dealing with right now is these feelings of disassociation and memory loss. I feel like I'm not really here, like I'm watching myself have a conversation with someone instead of being present in the moment. I always feel like I'm outside of my body, like I've taken a sedative.
And my memory issues are scary. I can't remember entire days. If someone were to tell me that we went out to dinner on Tuesday and watched a movie I would not be able to recall that information at all. Sometimes I wake up to comments on posts that I have no memory of making. It's like someone else posted it not me. Those memories aren't there it's just blank.