My first couple weeks on CPAP. Hopeful but Frustrated

I wanna say, off and on I'm frustrated. Right now as I write this, with a pain in between my shoulder blades (and maybe from having a little too much alcohol yesterday celebrating the holiday weekend) I am frustrated.

I notice this off and on problem of my backgetting BAD paid right between my shoulderblades. It can get so bad that it can cause me to have trouble falling back asleep if I wake up. AND I'm still waking up. I mean, the machines says I'm not having any episodes (10 setting) or very few episodes but I am still waking up like 3 or so times a night and usually I have to pee then get back to sleep. On the good nights I fall right back out. But I still feel like I'm having to play this guessing game of when to wake up and GET up vs waking up too early and being tired all day.

I wake up some days tired but other days I feel ok. I do a lot of meditation so if I wake up and I'm tired many times I can wait a couple hours, lay down to meditate, catch a little snore and feel ok for the rest of the day. But I was hoping that CPAP was going to take care of that problem. I guess one good thing it seems to have elimanated is the HORRIBLE feeling I used to get that felt like I was getting brain damage from being sleep deprived (feeling BEYOND tired).

But now this back pain thing - this is a BIG DEAL. I just want a peaceful night's sleep without all the BS. I read in some posts it's aerophagia. Other's say it could be sleep position which I KNOW it's not. One guy said that his sleep therapist told him to use a heater hose and once he did that his back was ok for a couple months but then after 2 months his pain came back. I also have a history of back pain off and on which I have been discovering is likely Tension Myositis Syndrome (TMS) which is discussed in the book "Healing Back Pain" by Jon Sarno MD. But that actually confuses me because I don't know if this pain in my back is caused from therapy or it's just some weird trigger that is causing TMS.

UGH!

I am feeling hopeful, a little, but I was hoping I would have no more wakeups, no more tired days and now I am dealing with this off and on back pain thing added to that. I just want my sleep back. More accurately, I just want to have solid sleep every night, and wake up every day refreshed so I can live a normal life. I even sometimes think that maybe there's something else going on that's not getting treated. However, last time I went to the doctor and he tested me for all sorts of stuff - pre-sleep test, I was basically healthy as a horse.

Any advice or words of wisdom, encouragement, etc, would be well appreciated.

Unfortunately, CPAP does sometimes uncover things that were not noticed before - fix one thing, another "breaks out." Very difficult to diagnose, as pain can be referred from another part of the body. However, pain is almost always a sign of something being wrong that you should have checked out. It could be sleep position, it could be aerophagia (not highly likely if you are only on a pressure of 10 cm), it could be a bit of arthritis, or it could be something else. You need to try and continue with the CPAP because sometimes things get worse before they get better. Make sure you have your back examined by an MD - you need them to make the diagnosis, not self-diagnosis or something some random person on the internet thought you might have.

The waking up may take a bit longer to "fix" than a couple of weeks, especially if you are in pain. The body probably got used to waking up because of the apnea, and doesn't realize that it is now getting enough oxygen without waking up. I wouldn't wait very long before getting the pain checked out (like maybe an ER visit tomorrow?), but the waking up could wait a couple more weeks. It probably took me a month or so to stop waking up to pee every night, and even 5 years later I still have some nights when I have to get up.

Hang in there - it will get better.

Other's say it could be sleep position which I KNOW it's not.

Uuumm no not necessarily. One sleeps deeper when on cpap and moves a lot less. The first week my HIPS killed me I could hardly move in the morning. My neck and shoulder also hurt. I was waking up hours later in exactly the same position I laid down in. I added a mattress pad and 2 duvet quilts and a neck roll for the pillow and it helped reduce it.
If you sleep on your side, put a pillow between your knees to keep your spine from torquing and roll up a small towel to put in your pillow case to support your neck.

Have you down loaded Sleepyhead and checked the details of your nights, especially the ones where you wake up tired?

SleepyToo2 wrote:
The waking up may take a bit longer to "fix" than a couple of weeks, especially if you are in pain. The body probably got used to waking up because of the apnea, and doesn't realize that it is now getting enough oxygen without waking up. I wouldn't wait very long before getting the pain checked out (like maybe an ER visit tomorrow?), but the waking up could wait a couple more weeks. It probably took me a month or so to stop waking up to pee every night, and even 5 years later I still have some nights when I have to get up.

Hang in there - it will get better.

Sooo.. I suppose, but why the ER? You're saying that this could be something that was hidden but now that I'm getting oxygen it's noticeable? I have to check in (according to the compliance request of my insurance company) with my doctor on the 8th so... But I'll see what's up. If it's bad again I'll hit up the ER and get a look.

BlackSpinner wrote:

Other's say it could be sleep position which I KNOW it's not.

Uuumm no not necessarily. One sleeps deeper when on cpap and moves a lot less. The first week my HIPS killed me I could hardly move in the morning. My neck and shoulder also hurt. I was waking up hours later in exactly the same position I laid down in. I added a mattress pad and 2 duvet quilts and a neck roll for the pillow and it helped reduce it.
If you sleep on your side, put a pillow between your knees to keep your spine from torquing and roll up a small towel to put in your pillow case to support your neck.

Have you down loaded Sleepyhead and checked the details of your nights, especially the ones where you wake up tired?

Ok, Sleepyhead. And I'm pretty sure with my laptop I'll have to get a card reader too. I just remembered I was going to ask about the software. You read my mind. Thanks.

So moral of the story is, I am probably going through an adjustment period, that these things take time but that I should double check all this stuff to be sure? Anything I'm missing?

BlackSpinner wrote: I was waking up hours later in exactly the same position I laid down in.

my first night, I strapped on the mask, turned on the machine, and went to sleep... woke up the next morning, and couldn't feel my right arm, I'd had it crooked funny under my head. it ached for *weeks* ... I was that tired.

looking back, I don't know how I functioned BC.

So yep, woke up with the big back pain today. I am starting to really think this is TMS and I know some of you are like, "Get it checked out." and I will hit up my doctor come tomorrow and find out but I can find no other feasible reason for my back to just hurt like that.

I only think it is TMS because TWICE so far I have had the pain go completely away, both times while practicing what I am leading from Dr Sarno's book on Back Pain. I know some of you are not into that kinda thing from some of the responses I've gotten but just like there is a huge community here about CPAP, there is a HUGE community about TMS and Back Pain as well. If there is a link, that indeed CPAP is uncovering something else, but in this case it's actually TMS more than it is physical, then this could be a huge help to all of those people in all of those threads who are suffering with back pain.

I'm not dead set on it either. I know it could just pass with time. Maybe it's this or that or the other thing. I am open to all possibilities, physical or otherwise. I just want to make sure it gets healed. I really hate waking up with a sharp pain in my back which doesn't allow me to get back to sleep.

Right now as I write this, I THINK I slept 7-8 house but because I woke up in pain, I'm worried I will get up and be tired in 15 minutes and hate my day. I have friends wanting to hang out and I can't even give them a solid answer. YUCK! But I am trying to be patient.

I have read a couple people who are in worse off shape than me, and I wish them blessings and the best, so maybe I should stop being such a spoiled baby and get up and embrace what life gives me today, knowing that at the very least, even if I got like 7 hours of sleep it was 7 hours of TREATED sleep vs the last 15 or so years of UNTREATED sleep...

Pain is an odd beast. Where you feel the pain may have nothing to do with where the real problem is. I have know people with very bad back pain to be cured by a lift in one shoe. Your brain is also involved heavily in pain and sometimes gets stuck in the pain mode. A lot of modern pain management has to do with perception of pain so if TMS works for you it is good for you, regardless of what other people think. Your body and mind are a unique product of genetics and life experience, if funny breathing exercises, walking on coals or pretending to be a water bird help you deal with pain then it is a good thing.

It is perfectly possible that the stress of adapting to cpap is causing enough tension to create your pain. And pain will disturb you sleep. Check your mask - is it too tight (a common newbie problem)- a too tight mask can trigger tension in the jaw and that tension can very easily be transferred to the neck and upper back. You could also unconsciously be holding your neck and shoulders tightly because, you know that thing on your face is a bizarre alien thing.

BlackSpinner wrote:Pain is an odd beast. Where you feel the pain may have nothing to do with where the real problem is. I have know people with very bad back pain to be cured by a lift in one shoe. Your brain is also involved heavily in pain and sometimes gets stuck in the pain mode. A lot of modern pain management has to do with perception of pain so if TMS works for you it is good for you, regardless of what other people think. Your body and mind are a unique product of genetics and life experience, if funny breathing exercises, walking on coals or pretending to be a water bird help you deal with pain then it is a good thing.

It is perfectly possible that the stress of adapting to cpap is causing enough tension to create your pain. And pain will disturb you sleep. Check your mask - is it too tight (a common newbie problem)- a too tight mask can trigger tension in the jaw and that tension can very easily be transferred to the neck and upper back. You could also unconsciously be holding your neck and shoulders tightly because, you know that thing on your face is a bizarre alien thing.

I'm thinking along the same lines, BS. Jimmy - I had not heard of TMS before your post, but it wouldn't be surprising to have this along with apnea or without. I am very new to cpap; only 4/5 days in, and the first two nights I was using a Quattro Mirage FF mask because I was breathing through my mouth prior to using cpap. The first night, I woke frequently yet felt like I slept great (most likely from relief to finally be getting treatment ). The second night I did not sleep well, and noticed I had to keep my head in one position because even the slightest movement would cause a leak with the mask- feeling like you can't move for fear of mask/ hose leaks and not moving could cause a tension problem, IMO.

My third night I decided to try a Swift FX nasal pillow mask. I did not think I would be comfortable with the nasal pillows, but within minutes I was comfortable and off to sleepyland I have to say the nasal pillows are not what I imagined, and are more comfortable than one would think. I am still waking a few times per night slightly, but able to go back to sleep easily enough. I love that I can move my head, body, legs, etc. with the Swift FX and not one leak yet
Have you thought about trying a nasal pillow mask? I am not breathing through my mouth at all with mine.

I do feel more rested with the treatment now, but still tired some during the day. Am taking naps when I can and using the cpap then too. From what I have learned here this process takes time, patience, and self-advocacy to get the most out of your treatment. It sounds like you are doing what you can, asking for help from others, and trying diligently to get to feeling better. These are all great steps - so keep your chin up

ok, UGH! Back was Killing today and I am going to have to try and get more sleep. I probably only got 4 or so hours so far and the back was unbearable.

I am switching to nasal pillow. My concern is I have one but it has been stored away for a while. It seems clean but it was not in a bag and open to air. I wiped the inside and out of the nasal part with baby wipes. Just wondering if any weirdness can build up in the hose part over time. Like I said, it was stored ok, not in a nasty place or anything, and breathing through it smells ok...

Going to set up a doctors appointment later today once I get more rest to rule any crap out with my back.

last night. Changed masks. Tried nasal pillows but just couldn't get used to them so I went back to the original mask I had which was the one I have listed in my profile. I also went to walgreen's and bought and wore a chinstrap. I'm just ruling out any possibilities. I woke up today without much back pain but because my sleep was a mess yesterday; today I am less than energetic. I am tired and just feel like staying in bed. But I'm not so super tired, just like - I feel that I have energy, but not enough to actually accomplish anything without forcing myself to.

But at least there was VERY MINIMAL backpain when I woke up today so that makes me hopeful for tonight. I did take 1 aspirin and 1 ibuprofin before bed, as well as my stack of calcium/magnesium/vitamin d/cod liver oil some time yesterday.

So, here I am. Not working out today probably despite the fact that I need to get in the gym, tired, blehhhh. It's a beautiful, sunny day and I feel like not doing anything at all. This summer has sucked so far. What a waste this Sleep Apnea BS seems to be for my life.

.....