Fibromyalgia Support Group

Yes my darlin I have sleep apnes I also have CPap machine Im lucky becuse my insurance paid for it otherwise it would have cost a fortune.I have yet to get it to work correctly.I can only use it for about 3 to 4 hours a night.I see the sleep Dr on Tuesday and I will be discussing all this..Im disapointed in the fact that they said it would be my saving grace and has to help me...Gentle hugs

I also had a sleep study done. But communication problems. I took Xyrem during the whole study and I was not supposed to. I refuse to take another one cause I am very sensitive to all the Electric current in the room. My Doctor feels Fibro is caused from lake of REM sleep.

I have been going through this the past couple years, I had sleep study and was told that I had apnea, hyponia, RSL, and sleep paralysis. I was put on BIPAP and tried several meds for the RLS....nothing worked, couldn't get used to machine and the side effect I kept getting from the different meds was like I had a hairball in my throat. After 6 months of adjustments the machine went back and the meds where done. My new PCP sent me to a doctor that specializes in sleep and breathing disorders and she thinks based on my descriptions of why I couldn't get used to the machine that I most likely have a "Central Apnea Disorder" with possible Narcolepsy of some sort and the sleep disorder would actually get worse with the CPAP & BIPAP machines. Now I have to have another sleep study at their lab that is suppose to be more specialized (24 hour test) and they have no direct affiliation with anyone who issues machines, if needed that would be up to insurance. Should be interesting to see what they say, but like any of these tests I probable won't be having it until summer by the time I can get in!!

I have sleep apnea was diagnosed back in the 90's and got the CPAP and absolutely could not tolerate it because it dried me out and if my nose got stuffed up I was trying to breathe in through my mouth against it pushing air out of my mouth through my nose (very claustrophobic feeling) and the mask was like having rubber bands around my face. Last year my Dad was dying and the hospice nurse on night duty was able to watch me sleep as I was next to his bed on the sofa. She told me she couldn't see how I ever got any rest. Soon after this, I had a couple of instances of "accidents" during the night. I work at a hospital and so I asked our Respiratory Dept. about it. Turns out you can almost lose consciousness and lose bladder/bowel control...YIKES! I had another sleep study done and now the CPAP is much better it has a humidifying chamber and the headgear is much better. I have been 100% compliant this time. My study showed that I never went into REM and stopped breathing briefly over 300 times in 4 hours. It is very important for those with sleep apnea to seek treatment and use it. It has helped me a great deal. When they did my study they had me try different types of masks/headgear to see how they felt BEFORE I went to sleep, then once they determined I had apnea, they came in and put the CPAP on and watched to see what pressure (s) I would need to keep me breathing. They did tell me that if it took all night to see if I really needed it they would have to do it again with the CPAP to get the pressure(s) right so maybe this is why they want you to have another study but I would sure ask! If not how do they know how to set your machine up? I found a medical supply that allows me to "rent-to-own" my machine so you might shop around. I hope this helps.

Yep, had a sleep study and yep, didn't get enough REM sleep but was told it was for another reason (something like hypopnea I believe) and they wanted me to use a cpap machine. The way it was explained to me was that the cpap machine gives you more oxygen during your sleep which will allow you to go into a better Stage 4 sleep period. The thing was that, during my so called "episodes" where I wasn't getting restful sleep, I was still getting enough oxygen. Knowing that, I told the doctor that it didn't make sense for me to try to use a machine that gives me more oxygen when I am already getting enough. He wanted me to have another sleep study using the CPAP machine to see if it helped me any because if it did, my insurance would pay for one. I refused another study first of all because it was extremely annoying, and second of all because I really don't think it will make a difference and I will NOT be able to sleep with one of those things on my face anyway! WHew, that was a long story, sorry 'bout that! Anyway, in my case, I never went for it and won't have another sleep study... that's my story! If you try it, I hope it works for you!

well, they are going to be doing another study in may, and fitting for the right machine/face mask/pressure setting, until my instances of "shallow" breathing disappear, or something. I just don't understand how sleep apnea occurs with not stopping breathing, or major drop in oxygen levels? that makes no sense to me. not one instance of stopping breathing during the test? how is that any kind of apnea? lol

KiK -- that's EXACTLY what they were talking about with me. Granted, my insurance will pay for the machine, but I just don't understand where they think giving me more oxygen will help with my not getting REM sleep, or my legs kicking? lol that's silly, I already *get* enough oxygen, and never stop breathing. *thinks about that* I dunno, doesn't make any sense to me.

CPAP does not give you more oxygen, it is just pressured air...hence the name Continous Positive Air Pressure (CPAP)

CPAP & BIPAP are not oxygen, they are to assist in opening your airways so that you can get oxygen in and CO2 out. Here is something that explains Apnea a bit...and Bon is right about the importance of finding treatment. My hubby and brother both have enlarged hearts from it and my brother later had stroke from the enlarged heart.


Types of Apnea
The word apnea comes from the Greek word meaning "without wind." Although it's perfectly normal for everyone to experience occasional pauses in breathing, apnea can be a problem when breathing stops for 20 seconds or longer.

There are three types of apnea:

obstructive
central
mixed
Obstructive Apnea
A common type of apnea in children, obstructive apnea is caused by an obstruction of the airway (such as enlarged tonsils and adenoids). This is most likely to happen during sleep because that's when the soft tissue at back of the throat is most relaxed. As many as 1% to 3% of otherwise healthy preschool-age children have obstructive apnea.

Symptoms include:

snoring (the most common)
labored breathing while sleeping
gasping for air
very restless sleep and sleeping in unusual positions
changes in color
Because obstructive sleep apnea may disturb sleep patterns, these children may also show continued sleepiness after awakening in the morning and tiredness and attention problems throughout the day. Sometimes apnea can affect school performance. One recent study suggests that some children diagnosed with ADHD actually have attention problems in school because of disrupted sleep patterns caused by obstructive sleep apnea.

Treatment for obstructive apnea involves keeping the throat open to aid air flow, such as with adenotonsillectomy (surgical removal of the tonsils and adenoids) or continuous positive airway pressure (CPAP), which involves having the child wear a nose mask while sleeping.

Central Apnea
When the part of the brain that controls breathing doesn't start or maintain the breathing process properly it's called central apnea. It's the least common form of apnea (except in very premature infants, in whom it's seen fairly commonly because the respiratory center in the brain is immature) and often has a neurological cause. An example of normal central apnea would be the short pause that occurs following a deep a sigh.

Mixed Apnea
Mixed apnea is a combination of central and obstructive apnea and is seen particularly in infants or young children who have abnormal control of breathing. Mixed apnea may occur when a child is awake or asleep.

Yes... I know what CPAP means, but what I'm saying is my airways never *close off* or stop my breathing, so why would they bother with the CPAP. Mostly I move my legs, toss and turn, and have bursts of wakefulness, which are all conducive to fibromyalgia and PLMS... *shrugs* I just think the whole thing is silly.