Need Help and the doc doesn't seem to care....
#245237 - 02/09/06 09:11 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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I am still falling asleep at the wheel. I have mentioned this to my doc who keeps brushing me off as if it is no big deal. I cannot ride in the car more than 10 minutes with out nodding out. I am aware I am doing it and can't stop myself. So my husband is going to start bringing me to work on his way to his job which means I will have to get to work a hour and a half early but at least I won't kill myself or someone else.
My question is does anyone else have this problem? I mean I am starting to think this type of exhaustion is even past fibro. I wake up tired as soon as I open my eyes I am exhausted. I start to nodd off as I am trying to get my self oriented and out of bed. And then I fall asleep at the wheel on the way to work. And then while I am at work I nodd off at my desk or just sit there in a daze b/c I am so exhausted I want to cry. I fall asleep on the way home from work and then just drop onto the couch exhausted when I get there. But the weird thing is at about 8pm I get a spurt of energy and can actually get laundry and some things done.
Nelly, Linz, Michelle, Melissa, Ruchie or anyone else with fibro is this how you feel? I don't know anyone else with fibro, is this normal?
Christie
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Christie
~Hoping and Praying for Sleep!~
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I'm so sorry sweetie. First, I suggest a new dr!!!  Your's is obviously not taking you seriously! Can you see a rheumy dr, they are usually a little more helpful for the fibro issues. When I told mine I woke up tired and couldn't stay awake all day then couldn't sleep at night, he put me on Zanaflex. Its a muscle relaxer. I understand it as people with fibro don't get the restorative sleep they need which is why they wake up tired and this makes the fibro pain even worse. I also have RA and pain from that so its hard to tell how much its helping the pain but I'm DEFINITELY sleeping better. I also take Ambein which is a sleeping pill but because of the fibro you might do fine with just something like the Zanaflex. They also sometimes use flexeril (sp?) its the same type of muscle relaxer. I noticed an improvement right away and my memory is starting to improve as well! You shouldn't have to suffer like this, find a new dr! Hugs!!
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Taking it one day at a time.....
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As Michele said, it sounds like it's time to get a new doctor. This isn't only frustrating for you, it's dangerous to be falling asleep while driving! Your doctor should realize this. Has he talked to you about narcolepsy or is this degree of fatigue common for fibromites?
Quote:
And then while I am at work I nodd off at my desk or just sit there in a daze b/c I am so exhausted I want to cry. I fall asleep on the way home from work and then just drop onto the couch exhausted when I get there. But the weird thing is at about 8pm I get a spurt of energy and can actually get laundry and some things done.
I haven't been diagnosed with fibro (yet), but I experience this same pattern (except falling asleep on the way home). I do fall asleep at work - especially on my breaks or during lunch, whenever I get to sit down. If I can't nap at work, I feel like I'm in a dream/daze, doing everything in slow-mo, blurry vision. I get my energy later in the evening as well. So frustrating!
I hope your doctor either starts really listening and helping you, or you find a new one who will. 
Edited by Maria!Maria! (02/09/06 09:36 AM)
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Michelle
#245249 - 02/09/06 09:30 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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He had me on flexaril but it left me groggy in the morning. Now I am on sonoma which helps you get to sleep but only last in your system for 2 hours. So I don't think it is helping me get the restorative sleep. He is reluctant to give me ambien, evidently he is not a big fan he thinks it is to addictive. At this point I don't care I just want sleep so bad.
Do you find that the ambien is addictive? What did your doc tell you about it? Thanks for the support.
Christie
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Christie
~Hoping and Praying for Sleep!~
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My fatigue is a bit better from the energy extract stuff my doc put me on, but I still have days like that. I'll fall asleep in class, which I hate doing, when I have bad days. I don't have a driver's license, so I can't comment on the falling asleep while driving thing. But when I'm having a bad flare, I will get spacey and nod off in class. I think you really need to see someone else, if he's brushing you off about something as dangerous as falling asleep behind the wheel!
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Melissa
Friendship is thicker than blood. ~Rent
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Maria
#245252 - 02/09/06 09:35 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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I am not sure if this type of fatigue is normal with fibro. I was diagnosed about a year and a half ago. And at first I was tired all the time and felt like I always had a cold coming on. But I didn't nodd off at the wheel or anything. This extent of exhaustion has just started over the past couple months. And I do not get increased aches or pains with it or headaches like I usually would with a fibro flare up. I feel about the same in those departments. Although my memory is gone straight to h_ll, I can't remember saying something two minutes earlier. I don't know what is going on but I am desperate!!
CHristie
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Christie
~Hoping and Praying for Sleep!~
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Re: Michelle
#245256 - 02/09/06 09:39 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I do seem to be building up a slow tolerance to the ambien. I started off on the 5mg just over a year ago. Over the summer, I found I need to take 1.5 pills instead of just one. I did stop it completely when I got pregnant in September but when I lost the babies I went back on it and I'm not taking 10mg instead of just the 5. I don't know what will happen if I keep building up more tolerance to it as I know they don't like to give you more than 10mg.
When I first added the Zanaflex, he put me on 2mg a night. The first 2 nights or so, it made me feel a bit woozy, kind of drunk. I did this for 2 weeks than he bumped it up to 4mg and he will probably bumped it up to 6 today when I see him. I guess if you start off at a low dose and build up, you don't get the hung over feeling in the am. I've read that 6mg is the goal and then during real bad fibro flare-ups they may even have you take it during the day to help with the muscle pain. If you were too groggy with the flexeril, ask about the Zanaflex and ask about slowly increasing your dose. Its working well for me! My hubby says I don't roll and thrash around like I used to and I do feel much more rested. I need to be in bed for at least 8 hours or yes, I am groggy in the morning but I just make sure I go to bed early and I take the Zanaflex about an hour before I go to sleep. I noticed an improvement right away but it might take you a few days if you've been really sleep deprived for a while.
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Taking it one day at a time.....
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Re: Tissy
#245257 - 02/09/06 09:45 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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I think what you are describing is normal for a bad fibro flare. I had all the same symptoms. I would nod off at my desk all day at work and my memory just disappeared! It was AWFUL! Someone would come in and I would spend an hour with them picking out glasses and writing up there order and stuff. When they would come back in just a few days, I'd have NO CLUE who they were! That is NOT like me at all!!! I was starting to feel like a real ditz because I just couldn't remember ANYTHING! I used to be the one with the good memory but my hubby had to remind me of everything and I would go through sticky notes by the box loads because if I didn't write a note for it, I'd forget what I was supposed to do! I kept finding weird things out of place at the office and its just me and the dr so I don't have anyone to blame but me!
The memory is slowing improving as I'm working up my dose of Zanaflex! Its still not as good as it was but its getting better. You don't have to live like this, find a different dr who is willing to help you and to work with you on getting you better!
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Taking it one day at a time.....
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Re: Michelle
#245258 - 02/09/06 09:48 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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Thanks for the info Michelle. I just called my doctors office and made an appointment with another doc, not the one I normally see, for today at 3pm. I am going to see if he can give give me a referral for a rheumy doc and in the mean time maybe some better sleeping aids.
Christie
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Christie
~Hoping and Praying for Sleep!~
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I'm so glad you called them!! Now, write out a list of the problems you want to discuss and the possible meds you think may help, that way when you get there you won't forget anything!!! Don't let them blow you off, stand your ground and make them listen! 
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Taking it one day at a time.....
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I was going to wait a couple more weeks and see if the melatonin I am trying would work and I also had a b12 shot but on the way to work this morning I drove off on the side of the road 3 times which really scared me. So hopefully I can get some good drugs today and get a good night's sleep.
Thanks for all your help,
Christie
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Christie
~Hoping and Praying for Sleep!~
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Tissy - I don't have fibro or anything, but I would get to another doc pronto! Have him run a battery of tests to see if you have any deficiencies - like iron or B12 that can wipe you out. You could also have a sleep disorder - they run in my husband's family. They're exhausted all the time and could fall asleep at the drop of a hat. My husband gets tired while driving and it scares me. He nods off and shakes his head to wake up. This is something you need to take REALLY seriously.
Let us know.
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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I vote for not normal. I have chronic insomnia and am always exhausted when I wake up. But back when I drove to work every day, I NEVER even came close to falling asleep. To me this is serious and I don't liek the ide of you driving at all. Sorry but I'd hate for you to get hurt.
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Well, I have this as well. If I dont' get enough sleep it's worse. I thought it was just my meds or my imagination. So I guess i'm no help...but I CAN relate. Keep me posted...I'd love to hear what the new doc says! *hugs*
P.S. How are you these days?
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Formerly known as Ruchie
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Tissy!
#245330 - 02/09/06 04:01 PM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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I agree you're def experiencing Chronic Fatigue Syndrome, closely affiliated with fibromyalgia and definitely linked.  You're not getting restorative sleep at night and it's messing up your waking hours big time!! I really hope the B12 shot kicks in soon and you feel better. The Energy Extract Melissa and I are on has been working for me during the day. Here's the link Mel posted recently: http://www.nutrimedical.com/products.jhtml?method=view&product.id=1897
I totally feel the same way, especially in the wee early morning hours and at about 4pm. I've taken ambien at night, but they were addictive for me. I was prescribed the 10 mg pills, but I was taking 2 at night, and then 1 during the day to stop my back from hurting (they also kill pain). I went through 30 pills very quickly, and I don't think I'm going to renew the Rx any time soon. They're also expensive-- $112 for 30 pills with no prescription plan. Yikes!
Have you tried taking 1/2 a benedryl before you go to sleep, if a full pill makes you tired in the AM? If you kick in your sleep (ask your DH!  ), maybe you could consider taking baclofen to stop? It works for me with no morning effects-- I take 10mg before sleeping and I don't kick, jerk or gnash like I used to. Just some suggestions for your new doc... 
{{{{{{{{{{{{{{BIG HUGS}}}}}}}}}}}}}} to you!
Check your email.
~nelly~
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UPDATE
#245411 - 02/10/06 07:15 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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Thanks for the support everyone!!
My regular doc does research on fibromyalgia on the side, and is really good about not making me think I am a wacko and making all this up. But he focuses to much on the pain aspect and not enough on the sleep deprivation part.
So I went to see another doc in the same office yesterday and he was like "WHAT! You are falling asleep at the wheel. That's not good. We have to do something about that!" He gave me Provigil,anti-narcoleptic med, to stay awake so I don't nod off at the wheel or during work. He said they give it to fighter pilots in the military to keep awake. It works, I was really tired this morning but I didn't fall asleep at the wheel. YEAH!! This is a temporary fix though, he is scheduling me for a sleep study.
Thanks again everyone!!! Hopefully this sleep study will show something b/c he said I can only be on the Provigil for thirty days unless I have narcilepsy (sp?)
Christie
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Christie
~Hoping and Praying for Sleep!~
Edited by Tissy (02/10/06 07:32 AM)
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--------------------
Christie
~Hoping and Praying for Sleep!~
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Ruchie
#245413 - 02/10/06 07:23 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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Hey sweetie! How are ya today?
I have fallen into my own pit of self-pity and have been so tired I can't pull myself out. So I haven't been much use to others around me. I feel like I can't help anyone else if I can't help myself. And I have been so tired that I feel like I don't even have the energy to talk on the phone or type emails by the end of the day. So I have kinda withdrawn into my own little world trying to get my exhaustion under control.
I have been keeping tabs on you though, reading your posts. You are such an inspiration. I have one problem and I turn into a baby. You have multitudes of things you are dealing with but still remain upbeat. Sorry I haven't been replying to posts or emailing you lately. I think things will be better at least for thirty days while I am taking the Provigil to keep me awake. Hugs and smooches to you!! Thanks for being so upbeat and positive.
Christie
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Christie
~Hoping and Praying for Sleep!~
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That's great!!!!
I had a sleep study. It was no biggie, you'll just be attcahed a zillion wires and have to sleep while being monitored by a camera with a live person watching. he he 
Oh ya, and you'll have tons of 'goo' in your hair from them attaching electrodes there. It all washed out with shampoo though.
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Re: UPDATE
#245442 - 02/10/06 09:19 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Thats a great start! I'm sl glad they are taking you serious now!! 
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Taking it one day at a time.....
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Tina
#245446 - 02/10/06 09:37 AM
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Tissy
Reged: 07/15/04
Posts: 773
Loc: Baltimore, MD
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I was wondering were you able to sleep with all that crap attached to you and people watching? How long did it take? Did you do it at night or during the day?
Thanks for any info.
Christie
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Christie
~Hoping and Praying for Sleep!~
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Tissy - I'm so glad you're going to the sleep clinic. Let's hope it will give some answers. My FIL has a machine he puts on his nose at night and sleeps MUCH better. Now if I could only convince hubby to get one.
Hugs!
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Formerly HanSolo. IBS, OCD, Bipolar, PTSD times 3.
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I know what you mean about your hubby. I am beginning to think that I don't have a sleep disorder but that my hubby's snoring, possible sleep apnea, is keeping me from getting into a deep sleep. LOL!!
Christie
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Christie
~Hoping and Praying for Sleep!~
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Re: UPDATE
#245536 - 02/10/06 03:59 PM
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Linz
Reged: 09/01/03
Posts: 8242
Loc: England
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That just sounds like Fibro to me. That's why I had to stop working.
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