Cherie,

Fibromyalgia has long believed to be a sleep disorder.  I am not sure about the new thinking, but it certainly was in my case.  I was diagnosed with fibromyalgia 20 year ago, and it waxed & waned, and eventually I got a new doctor who sent me for what is called a SLEEP TeST.  They found during the sleep test that I woke up every 2 minutes (though I was unaware) and that I was getting NO restorative sleep.

Where do you live? Do you live in a major city? If so, you need to get yourself to a university-based physician who is a sleep doctor and pulmonogist, if possible.
You need a work up to get a sleep test.  If you are not getting restorative sleep, they will likely give you a CPAP, which is a machine that blows air into your nose
and keeps the closed airway open.  Most of us have something blocking our airway when our throat relaxes at night.  Mine is my tongue and soft palate (top of
the mouth).

How did you find us if you don't have Sleep Apnea?  But you must take my advice.  You are not going to get better on your own.  And sleep apnea can cause very serious
heart problems, organ problems, diabetes, obesity, as well as death.  Take care & go get yourself taken care of!!!


_________________
St. Remy
Night/Day Sleep Study Gtwn.Univ.
29 apneas/hour; no REM; no deep.
Oxygen desat 90-84%
14 cm H2O pressure
Failed CPAP use
TAT oral appliance 8/13/07

You definitely need to have a sleep test.  It sounds like you have a classic case of sleep apnea.


_________________


Acronyms and Often Used Forum Phrases
Respironics? M-Series Auto w/ HH & C-Flex; Flexfit? Hybrid? Mask, Encore Pro 1.8i

Cherie,

I am happy, as well as sad, to hear that I'm not the only one who can sleep for days. If my back doesn't start aching or I don't have to use the bathroom, I'm frightened how long I could potentially sleep. I live alone, so there's no noise to wake me up. Just this week, I fell asleep around 2:00 a.m. on Thursday morning, and didn't wake up until 10:00 p.m. Thursday night. Then back to sleep at about 1:00 a.m. Friday morning. I have slept days away. When stirred, I don't know if it's a.m. or p.m. or what day it is.

I don't have Fibromyalgia, as far as I know, but do have sleep apnea, and I am not on CPAP. Can't deal with it. I do agree with the others and think you should have a sleep study. My apnea is considered mild. I stop breathing "only" 14 times an hour for as long as 30+ seconds. The fact that I stop breathing at all scares me, but I have seen others in this forum who stop breathing around 80 times an hour. Scary.


_________________
SnickersPie

Hey SnickersPie,

If CPAP is not for you, please consider a titratable oral appliance. Statistically not quite as effective as CPAP, but  still effective and a viable alternative for those who cannot tolerate CPAP.

Best,

Sunshine

Thanks, Sunshine--

I'll do some research on the web, but is the titratable oral appliance a dental implant/mouthpiece? When I saw an ENT to discuss surgery to treat my apnea, he didn't think I was a good candidate and suggested a mouthpiece. I am currently unemployed, and even if I was working, I am told that insurance doesn't cover this and it costs about $1,000. True?

Thanks for your advice. I've been researching treatment for apnea for a year. Haven't found a tolerable treatment. Do you have the oral appliance?


_________________
SnickersPie

Here's what Current Diagnosis and Treatment in Otolaryngology -- Head and Neck Surgery says about oral appliances for OSA:

"Oral Appliances

Oral appliances can also be used successfully in patients with primary snoring, mild-to-moderate OSA, and for those patients who refuse CPAP therapy. The more thoroughly tested of the oral appliances are the titratable mandibular repositioning devices. In mild-to-moderate OSA, these devices have been shown to decrease RDI to levels comparable to CPAP therapy, improve symptoms of excessive daytime sleepiness, and decrease RDI in some patients who have been unsuccessfully treated with uvulopalatopharyngoplasty. The nightly use of oral appliances is typically tolerated better than CPAP. Patients wearing oral appliances may complain of jaw or temporomandibular joint pain (which seem to be lessened by the titratable oral appliances), headaches, and excessive salivation. Reaching optimal treatment with oral appliances takes longer than it does with CPAP, and the long-term effects and outcomes of patients with OSA who use oral appliances is incompletely studied."

The studies I've seen show oral appliances are somewhat less effective but still a viable option for some. Have you tried CPAP w/an oral interface? When did you last try CPAP? A pulmonologist once told me that w/all the new masks and interface options most people can find something that works. So if you tried CPAP long ago it might be worth another shot.

Great information. Thank you, Sunshine.

Yes, I did the CPAP study last Spring. I ended up leaving the sleep clinic because I couldn't tolerate any of the masks. I never even tried to sleep with them. Just sitting up watching TV, I felt like I was suffocating.

Since then, I've been pursuing other options ... alternative masks ... surgery ... forcing myself to sleep on my side ... etc. Since the dental implant isn't covered by insurance (back when I had insurance), I didn't investigate it any further.


_________________
SnickersPie

Snicker,

First off I had a UPPP procedure (where they cut out my Uvula and tightened up my soft palate) after my initial Sleep Study and when I refused to use a CPAP.  That hurt like hell and I started getting sleepy again after about a year.  I therefore dont reccomend this surgery for anyone.  It took about another year for me to go back to the doctor.  When I took my first sleep test after all this I had 132 wake ups an hour due to OSA.  Even though I couldnt tolorate the CPAP machine before I figured that I better try again.  This time the doc prescribed Trazadone to help me wear the thing.  It took like 6 months before I actually started to use the thing at least 6 hours a night but in doing so I saw a huge difference in how tired I was.

Last week I had the all day sleep study where they make you use the CPAP all night first then make you take naps every 2 hours to see how tired you are.  Now it showed that I had an average of 12 wake ups an hour but was able to fall asleep within 5 minutes for the daytime studies.  Yesterday I started taking Provigil and DAMN! I feel alot less sleepy as a matter of fact I actually feel awake for the first time in like 20 years.

My point is you have to figure out a way to keep the mask on all night then take the Provigil.  

Lastly, has anyone gotten a rash or blotchey skin due to this med?   Im also on the patch to stop smoking.  Should that have any interaction?  I want to know.

Thanks

Mr. Cardboard,

Specifically why do you have trouble with a CPAP?  We have helped literally thousands overcome difficulties and we most likely will be able to offer suggestions to you.  Are you clautrophobic, does your throat/nose dry out, do you have trouble breathing against the pressure, etc?

Call a pharmacy and ask about the interaction of Provigil with a patch or any other meds.  They will know the answer.

Vicki


_________________
Being defeated is often a temporary condition. Giving up is what makes it permanent.
Marilyn Vos Savant

That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Vicki,

I guess the real issue with the mask is that with a setting of 15 I have to wear the mask tightly which is uncomfortable.  FYI I have tried at least 4 different types.  I was tearing off the mask in my sleep withot even knowing.  Breathing against the pressure doesnt bother me and I have a humidifier attached that helps with the dry out.  

One side effect that doesnt seem common is my ears started to bothering me.  The pressure made my ears pop and I had like 13 ear infections over 12 months.  I finally had tubes put in which seemed to stop the infections but now I sound like a pipe organ, at least to myself.  With the Trazadone I have been able to sleep and with my wife, who has been loosing patience with my OSA, I have been able to keep on the mask or put it back on when I take it off.  I have to say that the marks from the mask also are bothersome but I can live with that.

I think you gave up way to soon on cpap.  I thought the mask and air pressure were horrible during titration, but the results convinced me to stick it out.  You should at least give it a couple of weeks to get used to it no matter how hard it is at first.  If you feel as much better as I do, I'll bet you'll continue to wear it.  I'm on my fourth mask and still having various problems with leakage and sore spots but I'm sure gonna stay with it.

Hop


_________________


Acronyms and Often Used Forum Phrases
Respironics? M-Series Auto w/ HH & C-Flex; Flexfit? Hybrid? Mask, Encore Pro 1.8i

Mr. Cardboard--Interesting information. I appreciate your advice. As previously posted, surgery will not help me according to my ENT. I'm already taking such a complicated $!@# of meds for other health issues, adding Provigil is not a good idea.

hhopper--You really think I gave up too soon? I did post somewhere on this forum that I was scheduled to give CPAP another try on January 31st after many months of research, but my insurance company dumped me due to what I believe was a data-entry error, and I can't afford another titration study at $2,045, plus the cost of the CPAP machine. Blah, blah, blah. Yadda, yadda, yadda. I'd do anything to feel better, including taking the advice of other posts on this forum to just give CPAP some time to get used to.

Ho-hum ...


_________________
SnickersPie

Thanks  for all the feed back. Unfortuneatly, I don't have insurance right now, but I will defineatly   speak to my Doctor about anything she can do regarding Sleep Apnea Tests.  

Right now I'm suppose to take 1 Provigil 200Mg. first thing in the moring, then one or two later if needed.I also have phentermine 37.5 mg. (which is a diet pill) just in case. Weight wise I don't need diet pills. Because I'm uninsured I see a County Doctor and I sort of ask her for things I hear or read about.

I can really feel a diference with the provigil, but I guess from what I'm hearing I'll never ever feel like myself again.

Does this come on with age or stress or What?  I never slept like this before.

Snickers - Pain is the only thing that wakes me up too. In my hips.  Thanks for the note.

Cherie--Like you, if it weren't for my hips aching or my bladder, I may sleep for a week.

Good luck to you, sweetie. Please keep us posted. Your experience may help someone else.


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SnickersPie

Thanks again, I'm going to keep investegating, but I think the most important thing to me was finding I'm not the only one out there.  Thanks for the advise and support.