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TipBill

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Sep 8, 2014
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224
Reason
DX FIBRO
Diagnosis
03/2014
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US
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I realize this is a fibromyalgia forum but does anyone have to use a CPAP machine as well? If so do you find that it helps. I was diagnosed with fibromyalgia as well as obstructive sleep apnea and I have been using the CPAP machine since mid April. As far as I can tell it does nothing for me. Even with taking an Ambiem before going to bed I still wake up several times during the night and when I wake up in the morning I still feel utterly exhausted.
 
Hi there! My mom used one of those, but she couldn't stand using it for too long, it caused her throat to dry a lot and it was so uncomfortable to sleep wearing one of those things... She had to stop using it, it was so uncomfortable for her!
 
I too have obstructive sleep apnea and have to wear a CPAP, The full face one made me freak out but since I am not a mouth breather I just got one that fits in the nostrils. It's a great idea but the darn thing doesn't want to stay on at night! For the insurance to pay for it I have to wear it at least 6 hours a night. No fun!
 
I have been on CPAP for close to 20 years and developed fibro about 5 years ago.

If you are not getting restful sleep while using CPAP, there are several possibilities. I am going to assume that you are 100% compliant with CPAP, because compliance is necessary to get full advantage of it. I would suggest having your CPAP checked by whoever provided it to verify that it has been properly set to your prescribed pressure. Another possibility is that you are "mouth breathing" while you are sleeping, you will not be getting benefit of CPAP if air is escaping through your mouth while you are sleeping. One of the indications of possible mouth breathing is having a very dry mouth, another indication is excessive use of water by your humidifier (if you use one). There are sleep apnea support web sites, such as the one ran by the American Sleep Apnea Association.
 
Most people that I have seen or heard that used the CPAP machine, did not very much like it, and most also claimed that it did not help them much.
 
It took me a while to get used to CPAP, and it eventually became as automatic to put my CPAP mask on when I go to bed as it is to put my eyeglasses on when I get up. When properly used, CPAP makes the difference between night and day for many CPAP users. There are some people for whom CPAP doesn't work, a good sleep specialist will identify those people during analysis of the sleep study, typically it is because they don't have simple obstructive sleep apnea or they require a very high pressure (greater than 20cm/H2O). There are two effective treatments for moderate to severe obstructive sleep apnea; CPAP and a tracheostomy. Given a choice, I would choose CPAP over a tracheostomy. For some people with mild sleep apnea, an oral device worn at night might be effective.

There are other types of sleep apnea besides obstructive sleep apnea; central sleep apnea and complex sleep apnea, which is a combination of obstructive and central sleep apnea. Central sleep apnea is where the patient stops breathing, obstructive sleep apnea is where the patient tries to breath, but a physical obstruction prevents breathing. Central and complex sleep apnea can be very difficult to treat, and there is a special type of *PAP called BiPAP that can be used, which works like a sort of breathing pacemaker -- and I understand is extremely difficult to adapt to using.
 
If you are having problems with a nasal mask not staying on at night, it may not be a good fit for you. There are several brands and types of masks, and there are different sizes of masks. Finding a good fitting CPAP mask fit can be like finding good fitting blue jeans. A hint for trying on masks at a DME is to try the fit when laying down in the position you normally sleep. Gravity changes the shape of your face, and a mask that fits when sitting up may not fit when you are laying down.

When many or most people first start using CPAP, they take their mask off at night in their sleep, this is a normal phase. If you find that you have taken your mask off at night, just put it back on, don't fret over it.
 
I found it very easy to adapt to wearing a CPAP. Actually liked it. I had 100% compliance for a couple of years (even during naps), but I never felt the slightest difference in my health or symptoms. Same exhaustion. Same falling asleep involuntarily during the day. When I started having dry sinuses using it, I quit using the CPAP. I felt no worse, so I never went back to using it.
 
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