So my doc and I are getting ready to start the disability process. It’s a huge step that I’m taking after ten years of being sick, this is my resignation to the fact that it wasn’t something I would just grow out of.
Anyway one of the things she wants to have done is a sleep study. She used to be on the board of doctors that helped the disability board decide who does and doesn’t get approved. One of the things she has told me is that since lupus is a tough illness to diagnose its possible that I could go round after round trying to get my claim approved. So to combat it she is having me do things to help rule about other illnesses.
She wants to show that my fatigue issues (which are pretty severe) is due to lupus and fibromyalgia I stead of something like sleep apnea. I love the fact that she has this inside knowledge (among many other things.,seriously she’s the best doc ever) but for some reason I’m terrified of this sleep study. I don’t know why. I have a hard enough time falling asleep, and then staying asleep for more than a few hours when I’m in my own bed bit hooked up to machines, knowing someone is watching me is a little disconcerting. I have already cancelled twice, once because I was in a particularly bad flare and another cause I just weenies out.
I know I shouldn’t be as anxious about it as I am but I was hoping that maybe some of you have had one done and can let me know how it went and what sorts of things I can expect. Maybe that will bring my anxiety down a bit.
Sorry for the long winded post, I get chatty when I’m nervous. Thanks in advance for your time
Perhaps you could have your doc arrange a dry run: they do hook everything up but you are not expected to sleep. That way you can understand that nothing hurts during the study and you can chill.
Cardiac stress tests HURT and MRI' s freak me out - the buried alive sensation.
You are truly lucky to have a doc wiling to go the extra mile for your disability. Do your best to cooperate - your disease process seems so serious that she knows you must have the disability.
I have family and friends that have had sleep studies. They say it is no problem. They were told to go through the same process they would at home before bed. So if you read, or watch TV you can do that, If you have a beer or a glass of wine you drive to the place of the test and drink it. Everything you normally do you do there. If you need anything during the night like going to the bathroom they are able to disconnect cords allowing that also., I have been told it is now problem at all. Hope thiis helps.
It is really amazingly easy to do. The day of, do some extra stuff. You will be tired and don't stress about the test. Imagine you are elsewhere doing your favorite thing to do. The techies there know it will take you a while to relax and sleep.
I think you’ll do fine if anything they will see that you really do have a problem with sleeping. So it can only help you so just tell your self that. You’ll do great!! Good luck and keep us posted ! I do recommend you just do it and get it over with! Good Luck!
The night I had my sleep study was great I actually did a lot better than I thought I would. It ruled out apnea and I discovered I did not go into a deep sleep so we changed some of my meds. I hope you do your sleep study soon and I am glad you have a doctor willing to help you so much.
My first symptom of Lupus (it started about 6 years ago) was EXTREME fatigue (I would sleep for 15 hours on the weekend and still take naps and be tired). They sent me to a hemotogist because I had anemia (had an iron transfusion). That didn't help, so I was scheduled for a sleep study. They just hook a bunch of pads and stuff to your head and chest which is kind of strange feeling. They offered me a sleeping pill to help me go to sleep, which I declined because I never have any problems going to sleep!!! But you may benefit from that though. It is not a scary process at all. The hardest part for me was waking up at 5:00 AM and getting "kicked out" so to speak, lol. Good luck to you!
I had one done and I used the meds I take at night, read a while then went to sleep in my normal fashion. It proved that I don't have sleep apnea but I wake up a bit lots and lots of times per hour. It isn't a big deal at all.
I've had 2 sleep studies, and the worst part about it was the wires. The wires were a problem for me because I'm a tosser/turner. Other than that, the place I went to was a really nice facility. Their bed was a heck of a lot more comfy than my own! Don't stress it. You'll be fine.
I had a sleep study done as well and can echo all of the above. It is normal to be nervous but it's really not at all as hard as you might think. I agree that the only bad part was being told I could leave at 5am. That part sucked, but the rest of it was a breeze.
Thank you all for the great info and well wishes. It really has helped me be a little less anxious because of it. Maybe I will indulge in a day of light shopping the day of, that always wipes me out.
To be clear RosieS, I have always been a hundred percent cooperative with my doctors (save for the one doc that wanted to do open heart surgery on me to fix a hole in my heart that test after test showed I really didn’t have…she was a wackadoo) not doing the sleep study isn’t an option in my mind. But I suffer from a severe anxiety disorder as well as PTSD, being tethered to wires and being watched all night could potentially be triggering so that’s why I wanted to arm myself with as much if the “good news” information that I could. For me if I can quash some of the what ifs, I do a thousand times better.
Knowing that I can still have my evening routine in place like normal is a huge huge help thank you all so much.
