Hmm! I guess I am going to have to go with the flow huh?

    • Anonymous
      August 24, 2008 at 3:47 am

      While many are sleeping tonight here I am on the computer and watching TV at the same time since 1:23 this morning. :confused: My sleep pattern is rotten! Can’t wait to see my doctor again on Tuesday and see when they plan on scheduling for a CPAP machine. I hope that helps!
      Let’s just say for almost 2 years now, I have this nasty rotten pattern that suddenly started with sleep apnea and insomnia. Along with dealing with pain! Starts every single evening with the pain setting in! Nerve pain and joint pain. Gets so bad that I have to take my cocktail of prescribed meds just to put me to sleep. Without it, I get no sleep at all! Have seen me without meds go 3 nights in a row not sleeping, then taking tiny 15 minute naps all during the day because I am exhausted.
      The powerful meds do put me to sleep. 4 or 5 hours a night. But the bad thing is I never go into REM sleep. That showed up in a recent sleep study test. Averaging only about an hour of sleep per night.
      All of this sleep stuff happened right after a car accident. I got ran over by an SUV and the SUV pounded me from my head to my lower tail bone. Knocked me very hard onto the pavement and the guy did not even see me. When he backed out I was crossing the street at the same time and looked both ways to see no vehicles. He was at a stop sign and pulled out and then deviced to back up into the parking lot and go into Dollarland. He was going pretty fast backing and I did not even know what was happening. It happened so fast. It stunned me bad! I got slammed into the pavement and it was on Mother’s Day. Some Mother’s Day! 😡 My chest hit the pavement, my chin hit the pavement and both knees. Had some nasty cuts and scrapes. My breast for 3 weeks were black and blue. Right after that I had pain so bad in my lower back that never went away. So I was up all hours of the night pacing the floors. Then my lupus that was in remission for 3years kicked in and I started having a time. 5 times I was admitted into the hospital that year being tested and treated. The orthopedic I was seeing back then was not a good doctor. Told me soft tissue injuries. Yeah right!:mad: Somebody told me about another doctor and he was pretty good! He did a CT Mylegram and found 3 bad disk. So they did Lumbar Disectomy. I actually did great! Except for the surgical pain, I was walking good again and sleeping okay and saw myself getting better. I was so excited! Thought I had my life back again!
      Then week 3 came along and I developed a really bad fatigue. I felt like I had Chronic Fatigue Syndrome. A few days later my nervous system went crazy. My arms started trembling like I had parkinson’s disease, lower eye lid had tremors, face felt funny, head felt funny. Then I started getting terrible massive nerve pain. My legs had the pain, my hands starting burning like fire and then I could not walk right.
      During this time, I called my regular doctor and he was on vacation. Saw my back surgeon and he called a Neurologist and I even called my Rheumatologist to tell him to see if I could get tested for my lupus. Never really liked that doctor because he never listened to me. Told me my lupus was not active. So we got into seeing another Rheumy. He did labs and found a positive IGM test and low LDH. Neuro did EMG/NCV and told me I had some kind of CIDP of unknown etology and referred me to Duke. Before I saw the Neurologist, I landed in the ER and they said Fybromyalgia and put me on Ativan. No test, no spinal, no nothing. The neurologist see’s me again in September. He is caring for me until I get into Duke. Told me he does not deal with CIDP and needed Duke for treatment.
      I have been waiting for treatment since June. This past week my regular doctor saw me getting critical and placed me on a higher dose of prednisone. But it’s not working! Too low of a dose. He decided to get me scheduled for a CPAP and a Spinal here in my area and also a thyroid scan. Will find out probably Tuesday when I see him again. He said if they find elevated proteins in my spine and do more labs which has already been done this week, he may have me admitted into Duke. Or call Duke himself ordering for me to be seen early. Keep your fingers and toes crossed for me this coming week. Then maybe I will see good sleep again. But until I get treated, I guess I will have to go with the flow. Start cleaning my house at 1 in the morning. 😀 Doing my regular chores at midnight instead of fighting during the day to do them. Become a graveyard shift wife! Hope everyone is sleeping well while I sit here staring at the dark caved in walls! Good night friends or should I say good morning.

    • Anonymous
      August 24, 2008 at 8:20 am

      I am so sorry you cannot sleep. What a bummer 😡 I’m up a little earlier today than usual, going to church. Girl just when I think what else does someone have to endure you come up with something else. You got hit by a SUV, you know girl if it were not for bad luck you would have NO LUCK! :p Now you know I just kidding with ya!!!! But geese you poor thing. Hopefull on Tuesday somebody can help & make a difference for you. I’ll pray for ya at church this morning. GET SOME SLEEP!!!!!!!

    • Anonymous
      August 24, 2008 at 7:54 pm

      Boy i know what you mean about sleep being messed up. Sometimes I have insomnia sooooo bad it just drives me nuts. But on the other hand I am always so tired I can’t hardly function. When I finally do go to bed I just don’t want to wake up..then i’ll be up for a few hours and before you know it i am ready for a nap..usually a 2-3 hour nap. just a vicious cycle.

    • Anonymous
      August 25, 2008 at 9:19 am

      Wow! Actually got lucky last night and slept 9 hours. :confused: Hmm! But that is my pattern! Will sleep good one night then go 3 days not sleeping. Got into the computer yesterday and looked up Sleep Diseases and Insomia Diseases. Actually found quite a bit on this disorder. Many people with auto-immune disorders can get this and it’s actually a symptom of disease going on. Sleep apnea can be the culprit, disease and depression.
      I’m not really depressed about anything or have anything bothering me except this illness. So disease or sleep apnea is the culprit. Going to try some new things out. No more sweets for a while, no caffiene, no drinking of fluids before bedtime and no midnight snacks. No more day time naps either. See if that helps me get back on a normal sleeping pattern. But I still need the CPAP and think that might help also in my sleep.
      But last night was a good night and I’m not going to complain! Hey! I got 9 hours! Woo hoo!:D