Do you have or suspect you have obstructive sleep apnea (OSA) along with fibromyalgia? Before I was diagnosed with OSA, I was sure I had it because of how frequently I would wake up gasping, feeling the rasp of a snore in my nose and throat.
When I realized the most common treatment is being hooked up to a machine all night, I was worried. I had enough problems sleeping - how was I ever going to sleep with a rubber thing over my nose? I was certain it wasn't going to work for me.
The machine most often used to treat OSA is called CPAP (pronounced see-pap), which stands for continuous positive airway pressure. Basically, it blows air into your nose (or nose and mouth, depending on the machine) and creates pressure that keeps the walls of your airway from coming together and cutting of your breathing.
Each time you stop breathing, which is called an apnea, it pulls you out of deep sleep and may even wake you up. In my sleep study, I averaged 1 apnea every 5 minutes. No wonder I felt like I never got any sleep!
After my first night on the CPAP, I was amazed at how deeply I'd slept and how much better I felt. In just a few weeks, I'd gotten to the point where it was tough to fall asleep without it.
Sadly, not everyone has that same experience. I recently got an email from a woman who'd gone on CPAP and had some minor difficulties in the beginning. However, she's concerned about 2 friends who probably should be on CPAP but aren't:
"Two months ago, my physician ordered a sleep study. It registered me as having mild/moderate apnea. I've been on the prescribed CPAP religiously every night and nap for the past month.
I began having many more normal person-living-with-fibro days almost immediately. Two the first week, 3 the second, and 5 this past week. And the number of days I feel that way continues to increase. If I work steadily for 5-8 hours, I may need some extra hours of sleep at night, but nothing like I was needing.
I have two friends with fibro who would be good candidates for a CPAP or AFLEX. One has had a sleep study in the past and a machine was recommended. She never got into actually using hers though because she didn't like the way the mask felt. The other close friend, who has symptoms similar to what I was experiencing, confides that she is pretty sure that she has apnea but that she can't imagine sleeping in a mask because she thinks she would have panic attacks about suffocating.
So are there tips to help people who need this therapy adjust to it?
I've been lucky that I took to my mask with no trouble. It is pretty tiny, just covering the end of my nose. I did have scabs on the bridge of my nose and on my upper lip for the first 3 weeks from the plastic part of the nose piece, but now my facial skin has toughened up enough that it looks as if that adjustment is over.
With the enthusiasm of one who has found something that is making such a positive difference, I'm now wondering why no one thought to check this out sooner. I would have requested the testing if I had known." -Claudia
Sleep disorders are common enough in fibromyalgia that I believe we should all have sleep studies as soon as we're diagnosed, and possibly even as part of the diagnostic process. Chronic sleep deprivation can actually cause fibro-like symptoms, so an early sleep study could save someone years of debilitating problems. (The same goes for chronic fatigue syndrome, which shares many symptoms of sleep disorders, especially narcolepsy.)
With OSA, treatment is essential. It not only prevents you from sleeping well, it can kill you. The interruptions in breathing can cause a stroke or heart attack. It also raises your risk of diabetes and depression.
Once you're diagnosed and faced with CPAP or another machine, there are a lot of things that can help you adjust. My About.com colleague Dr. Brandon Peters, Guide to Sleep Disorders, is an expert on CPAP usage. Here are some of his articles:
Have you been diagnosed with sleep apnea? How did you adjust to CPAP? What problems have you had? Leave your comments below!
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- Getting a Sleep Study With Fibromyalgia
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I have FMS and have been diagnosed with sleep apnea, but I have tried many “solutions” to help the obstacles to sleeping with the CPAP, and nothing has worked for me.
The full-face mask either leaked a LOT of air (which blew into my eyes) or had to be so tight on my face that it made my entire face/head hurt, throbbing with horrible pain – pain that felt like it was in my cheekbones – and headaches, or sometimes it would leak AND cause pain.
My FMS causes me to be so sensitive to pressure that I have trouble with discomfort where my head rests on my pillow or from a wrinkle in my sheets, so something strapped snuggly to my face is unbearable.
I also tried a nose-only mask (even though I sometimes breathe through my mouth), but that mask also caused the unbearable pain.
I also tried a nasal pillow, and it was better in that regard, but it was still uncomfortable where it touched my face (to a degree that made it very hard to sleep), and there were also other issues as well.
I have FMS and have been diagnosed with sleep apnea, but I have tried many “solutions” to help the obstacles to sleeping with the CPAP, and nothing has worked for me.
The full-face mask either leaked a LOT of air (which blew into my eyes) or had to be so tight on my face that it made my entire face/head hurt, throbbing with horrible pain – pain that felt like it was in my cheekbones – and headaches, or sometimes it would leak AND cause pain.
My FMS causes me to be so sensitive to pressure that I have trouble with discomfort where my head rests on my pillow or from a wrinkle in my sheets, so something strapped snuggly to my face is unbearable.
With all the different types of masks, I also had a problem with breathing out against the airflow, so they changed the rate of airflow, tried the CPAP that uses less pressure when you are breathing out, and set it to ramp up slowly (so that in theory, I would already be asleep by the time the machine reached it’s full pressure). With all of those “fixes,” I continued to have difficulty breathing out against the airflow.
Even worse, though, was the fact that much of the air being blown into my nasal passages did not go to my lungs as it should. Instead, it seemed as if the pressure continued to build in my sinuses and especially in my ears. The pressure on my eardrums was quite painful, and it really felt like if I continued to wear the CPAP all night, that it was going to burst my eardrums.
Again, they tried adjusting the amount of pressure the machine was forcing into me, but they were not able to find a setting with both had enough pressure to function properly in overcoming the apnea without it being too much pressure on my eardrums.
Finally, I have so much difficulty sleeping already, and the CPAP machine just aggravated that difficulty so much that I was not sleeping at all when I would wear it. So I continued to get more and more exhausted every time I tried to use it.
So now I do not use the CPAP, in spite of knowing the dangers of sleep apnea when not using a CPAP.
wow, that is really to bad that u cannot use the c-pap. It saved my life and that was before i knew i had fibro. About l6 years ago i feel asleep at a stop sign, had been complaining to dr. 3 years before that my reg dr. wasn’t there the day that happened to me so i seen the new guy. He sent me to the sleep lab that nite and i had stopped 467 times. They at first wanted to give me a trach (so long ago) but i wanted to try the c-pap first. My pressure was at 23, and it did give me ear trouble so i went to an ear dr. and had tubes put in my ears then they fell out so the left ear was good but he surgically implanted a tube in my right ear, have had 2 surgery’s since but they really are no big deal and ears have been fine now for about 3 years,Amen. The ear dr. said it was from the pushing everything to my ears was causing to ache and my own tubes were to small.
sorry this is the first time i have commented on anything. So mindy, i had lost weight and over a few years they go my pressure down to l4. All i have to say is try it tell your dr. about me and tell him to send you to an ear specialist where do you live, if you don’t mind me asking. Im lucky enough to live in pennsylvania and we have one of the best in the world her or we use to anyway he moved to New Orleans but he is the one who figured it out for me. He also was the dr. that invented the cocular implant, ( not sure if spelt right) it lets a great number of people without hearing be able to hear again. His name is Dr Ariaugia from allegheny general hospital from pittsburgh, his partner is still at that location he is also very good.
Do u know that they just came out with an implant for sleep apent. but just under the skin sort of like a pacemaker. That wouldbe the pefect solution for you. The old surgery was really painful (never had it but knew some that did) they had to remove what was everblocking the air. It is supposed to be an outpatient surgery now
I have mild sleep apnea, and in general I find that I wake up more refreshed when I use the CPAP.
HOWEVER, there are 2 situations that I’ve found where my CPAP is more of a hindrance to my sleep. (I should mention that if I had a more severe sleep apnea I might be more concerned with the risks of NOT wearing the CPAP).
The two situations where the CPAP decreases the quantity and/or quality of my sleep are 1) when I have an upper respiratory infection (i.e., stuffy nose, etc.) and 2) when I have a headache (the last 2-3 months I’ve been having these strange moderate headaches that we don’t know the cause of; the pressure on my head of wearing the CPAP increases the headache).
I am disappointed when either of these 2 hindering circumstances exists because otherwise the CPAP does help me awake more refreshed.
Do not use any longer cant stand mask full face or nose only. Noise and leaks are bothersome. Humidity problems also if I do not have distilled water on hand. My pressure is 12 and it ramps for the max and I am still usually not asleep and have to restart machine and ramping twice sometimes three times by then I just stay up most the night.
You might want to get a VPAP instead, (Variable) instead? Also, people might want to research Oxygen with the machine. That is what I do.
GG
Newer CPAP machines have circuitry that reduces pressure when you exhale and also a ramp up feature that starts with low pressure that slowly builds over a period of 15-20 minutes. I was diagnosed with apnea seven or eight years ago and CPAP has made a world of difference. It was a challenge becoming accustomed to it but worth the effort. There are many styles of masks, including some that use plugs directly into the nostrils — a possible cure for those with leaky mask problems. I’ve also had those issues, including rather serious eye irritation from it. But I won’t quit on my CPAP because it makes too much difference. Don’t give up.
By the way, it’s essential to have a good therapist to help you work out the problems but you’ll still have to do the lion’s share yourself.
I had a difficult time staying awake to drive to work and had to stop to walk around at times. I’m nowhere near 100 percent but the difference is remarkable. (And you’d be surprised how many people use CPAP. When I traveled a lot for business I’d see fellow travelers with the telltale red marks around their noses and a CPAP machine bag over their shoulders.)
My sleep doctor prescribed me a CPAP after my sleep study showed I had sleep apnea and narcolepsy. I was so happy to have something that might help me sleep better that I was thrilled. I’d do anything to keep from nearly falling asleep in meetings, movies, dimly lite rooms, etc. I’d sit at work and want to go to sleep so bad that I’d go to the bathroom and sit and take a brief nap. The major factor in my even having the sleep study was after I feel asleep driving in heavy Thanksgiving traffic and waking up as I was hitting the car beside me and in my confusion hitting the gas pedal rather than the brake. No one was hurt but my new Impala was dented really bad and the car I hit, which was a new car, was scrapped up pretty bad on one side. No one got a ticket and the officer bladed it on heavy traffic. I was so scared to drive after that. Once I got my CPAP and adjusted to getting a good nights sleep, my life changed. I had more energy, and I was sleeping soundly 7 hours a night. Having FMS I never feel refreshed or spunky in the morning, but my body has gotten the rest it needed. I was also put on provigil to help me stay alert during the day. I can honestly say the CPAP and progivil saved my life, and gave me back a part of the life I once had. It took very little adjusting to sleeping with the CPAP once I got myself in a comfortable position. I hardly move during the night now so the mask pretty much stays in place. I do have some nights that it leaks and wakes me, but I adjust it and go right back to sleep.
Interesting this article has come up now. I’ve been on a 2 year waiting list to see a sleep study doctor and be tested and now I’m due to be tested in January. I most likely have sleep apnea and my biggest concern was getting any sleep with the machine and adjusting to it. So, I guess first I’ll see what results come of the test and hopefully I can adjust to the machine if need be. Thanks. Sharing practical info on how to deal with various issues is useful.
p.s. still very grateful for the article and discussion we had concerning comfortable clothing. Good to chat with fellow patients about these things.
I’ve been on CPAP for several years. Initially, I tried the mask that fits over the mouth and nose. Then the one that just fits over the nose. They both drove me nuts with leaks blowing into my eyes.
Then I switched to a nasal pillow. That was much better but there was a lot of annoying plastic along my cheeks and a dumb strap under that chin that never did what it was supposed to do…keep my mouth shut. Now I use a nasal cushion. Much less stuff on the face.
I wasn’t getting 8 hours of sleep even with the CPAP but maybe 5 or 6. However, those hours were good sleep, not constantly interrupted sleep. So, I gradually began to feel a little more rested.
My apnea was fairly mild. My pressures were never higher than 10. Then I lost 80 lbs. The pressures are down to 7 and may go to 6. Doc says I probably will always need some CPAP because I have a “sleep apnea throat structure”. For me that means my uvula is saggy and floppy. Don’t you hate when that happens?
Anyhow, now I get 6 hours of sleep more consistently and even 7 now and then. I hope as I lose a bit more weight, that I might even make it to 8 hours a night.
In my town a 49 year old woman died due to sleep apnea just a few weeks ago. She was not on CPAP. Her oxygen levels dropped so low, her heart went into a lethal arrythmia and she basically died in her sleep.
It takes awhile to get used to the air pressure. Maybe people having trouble could talk their docs into lower pressures to start and to work up over the course of a few weeks. They also seem to come out with new nasal masks or pillows fairly often so ask for a different one. Keep trying. It is too important to just not use it.
I have been through 3 sleep studies over the last 4 yrs. I’m 5′2″, 100lbs & have severe sleep apnea with insomnia – returned that first machine- impossible to sleep with when conditions must be perfect for sleep. Tried oral appliance-horrible. I have the newest machine and I still do not use it. I hate anything constricting and I sleep on my side. I have to take ambien, go to sleep early & many times awake in the middle of the night a few time sometimes needing anti anxiety meds to get in another hour of sleep
I am much worse when I don’t sleep. I can’t function. CFS, Systemic Lupus, perimenopause, hypothyroid, Raynauds…you name it. 41 and I feel 75. Never know how I’ll feel from hour to hour. I can relate to Michael Jackson all too well. Sleep deprivation is torture, and when you’ve tried everything and it doesn’t work, or no longer works you could find yourself going to extremes to rest and attempt to function.
I was diagnosed with FMS. After 2.5 years of sufferring, i was diagnosed with OSA. The morning after my first night with cpap and my FMS symptoms completely disappeared. They are now gone forever, only to return if I neglect my mask for a night. CPAP cured me. I guess I was one of those ones with sleep deprivation caused fibro-like symptoms.
I agree, everyone with FMS should get a sleep study cos who knows, you may be just like me. Either way, treating sleep disorders can only help in managing FMS.
I have had sleep apnea for a long time. I had a sleep study done in Toronto…I live in Guelph and the Dr in Toronto recommended that I have my driver’s license taken away. My family Dr. had no choice but to follow his advice. I went to another Dr. in Kitchener and had a sleep study and even with the CPAP machine I still stopped breathing 60 times an hour. He helped me get my license back after 2 years without it.
I forgot to mention in my pvevious post that one of the benefits of the nasal pillow/cushion is that there is a segment of tubing that attaches to it that then attaches to the longer tubing that goes to the machine. The short piece of tubing is softer and has a swivel a the end attaching to the cushion. This has made it a lot less likley that the cushion will be pulled off with turning over.
I also suggest that you request a longer tubing. I think the basic one is only 6 feet long but try a 10 ft tubing. It also helps with not having things pull off with movement.