MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
but several years ago before I knew what was going on, I fell asleep on the couch one friday night after work and woke up very early sunday morning. It was a total shock. I didn't even think a person could sleep that long. Now its a pretty regular thing.
Be well,
Gabrielle
I'm still using that machine i started with 20 years ago. freakin thing still works.
whatever is causing my sleep problem is something deeper than sleep apnea. I'm sure if I had night terrors someone would have told me. and i can't recall the last time i had a nightmare. not since my 20s
the only other thing is the pain keeps me moving all night long. whatever part of me in in contact with the bed starts to hurt until is wakes me and i have to turn. I'm like a rotisserie all night long. I don't remember turning most of the time. but my cpap hope can get wrapped around my head and neck
My husband had that problem. His blood work showed he was anemic. He also had a bad thyroid. He has had seven back surgeries now. My point bring up the thyroid and back surgeries is he had many things going on at that time too. He got B12 shots monthly for the anemia. I believe it was for 9 months. Have they checked your blood for anemia? He would be sitting on the couch and out he went. I let him sleep. Then he would get up long enough to eat. 7pm would come and he would go to bed until 9am. I had to get him up because I had to eat at 7am because of my stomach and he wanted to be up with me while I and he ate. It took nine months to resolve itself. I was very supportive! He has been there for me with all my illnesses. Please check with your doctor. Okay? We care. Keep us posted.
For the first four or five months of the year, I was literally waking up every hour, and had to keep shifting position, like the rotisserie effect. I also had terrible problems with saliva and snot running into my windpipe, and even the dreaded GERD, sometimes spitting up stomach acid (with blood in it) that would then go down my trachea. Total Jimi Hendrix thing, I described it in another thread, for some reason, my doctor wasn't worried, my wife didn't even wake up-- but the dogs were in a total panic.
Okay, so I switched up sleep meds (Ambien to Lunesta or Zolpidem to Ezopiclone) which helped-- but I could only do that for two weeks, the Lunesta is so freaking expensive. That seemed to help, but the weird thing is, when I switched back to Zolpidem, it started working again.
I still have the Rotisserie-wake-up-paralyzed kind of thing where I don't really feel steady on my feet for an hour or two after waking up. And my level of discomfort in the morning is exactly the same, still having problems playing guitar (though I can do three songs at a coffee house) and my first surf day was kind of a disaster, was wiped out for three days, almost had to miss work.
BUT I am sleeping well for five hours in a row, and then one to three hours of crappy sleep, just about every night.
The difference in the brain fog is huge. I found the remote for my air conditioner-- very important, 105 degrees here yesterday, and the air conditioner is seven feet up on the wall, hard to balance on the step ladder to turn it on. That thing had been missing for weeks. Typing and writing my notes for work much faster.
Still need a nap in the afternoon, but sometimes I can just meditate, or just pass out with the dogs for 20 minutes. Earlier in the year, I'd be lying around for two hours unable to do anything.
I still don't really know what changed. I'm sure getting done with Dad's memorial service and the switch-switch back in medication helped, but that doesn't completely explain it.