I have a problem that is effecting my life horribly. [View all]

I do have lupus, fibromyalgia, and a bad back. I take hydrocodone for the pain; and an off label old drug for the fibro issues. Other than that, I'm on Effexor for anxiety and depression, and a blood pressure drug. But this ailment, while I've suffered from it for lots of years, is getting worse and impacting my life.

Since I was a child, I always knew I was a "night person." I used to crawl under the covers with the Funk and Wagnells unabridged dictionary and read til the wee hours, because not only did I love finding out about words, but I just wasn't sleepy. This has always made my life hard, because of course, life isn't set up to deal with people like me.

A few years ago, it got so bad I just couldn't go to sleep at night at all. It'd be 5am before I even began to feel sleepy. I thought it was part and parcel of the fibro. It, along with not being able to work out a telework situation with the DoD, led me to retire from work... which I hate. I wasn't ready to stop working, I just needed to work within the confines of my fibro, lupus, and THIS condition.

Over the last few months this has gotten worse, tho. I'm lucky if can go to sleep before 7am, and I sleep all day. Sometimes, I can sleep 10-12 hours, and when I wake up I feel worse than when I went to sleep. In addition, I have horrible brain fog, and I'm clumsy as hell. I can fall getting out of bed or trying to get dressed. Going into the kitchen to try to fix something to eat, I'll drop everything... my hands are so clumsy and shaky. I feel like I could go back to bed a few hours later and sleep another night's worth of sleep without any problem. Needless to say, I don't have a life, and I hate it. I mean, this is getting so bad it's bordering on suicidal. I have friends I'd like to get together with, but they're living a "normal" life. I can never be around when they're up and going. I actually like being with them, and the "aloneness" is driving me bonkers. My animals are even upset with me, and I don't blame them. I miss being with them, but I have no energy and no stamina... not to mention steadiness to play with them, especially my 100lb dog. One good swipe from his tail and he knocks me down -- I'm 4'9" and 95 pounds on a good day.

I thought this might have to do with my meds, so despite dealing with the chronic pain, I stopped everything I was taking that said it could make me sleepy. It had no effect. I still do "drug holidays" to try to see if it'll change. But so far, all it does is give me more pain when I AM awake.

A month or so ago, I saw an add come across my phone and I actually read it. It was advertising a medicine (which sounds like a pain to use) for something called "idiopathic hypersomnia." Has anyone heard about this, know anything about this? I did enough research to know that even the Mayo Clinic talks about it... so I have to think it's actually something real... not made up by drug companies to sell more drugs. But I checked off every damn symptom they talk about.

I have an appt with my doc on the 29th of next month, and I'm gonna tell her about this and what I've tried to do, both before knowing a "name" and afterwards. But if anyone has every known anyone with this, or has it yourself, I'd love to know what you've tried, if anything helped, and how you cope. I'm at the end of my rope.