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Hi all,
I've been on CPAP since April sometime and I use it faithfully. I find that it takes me a little longer to actually fall asleep, but once I do, I sleep all night. I don't even get up to use the bathroom. My AHI is 0.7. Really, I could not be doing any better.

And I feel worse. I wake up very stiff, whichever arm I am laying on is asleep and my hand is swollen, an my whole body feels sore. Sometimes I ache all day. I never wake up with a headache the way I used to, but the rest of me hurts.

I am diagnosed with fibromyalgia, and the sleep study was a part of the process of figuring out how to make me better.

So why do I feel worse??

Anne in New Hampshire, USA

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so assuming you've controlled for the sleep apnea/treating it well, then it's possible that one of your other conditions has independently gotten worse. you ask a big question and it's a good question, but i think you need to go back to your primary care physician with this question. there are so many other things that could be going on in your body . . .

... whatever you do, don't give up your good CPAP habits.
I think it takes time for the body to adjust to everything associated with using the machine. I had a lot of aches a pains that I'm sure were caused by the machine including serious back spasms. One morning I couldn't even move out of bed. I had to get muscle relaxers to help me through that time. The doctor said he had never heard of anyone having that problem. Well, it couldn't have been anything else. Nothing else was different. This is just my own experience and it could be something else as Mike said but, I hope not. I also hope you adjust soon and figure out what's going on. Good luck and hang in there.
Hi Cindy and all,
Thanks for replying. I don't take any medication except vitamin D. My only diagnoses are sleep apnea and fibromyalgia and the Vitamin D deficiency.
I suppose I have to go back to the doctor but honestly, I've been searching for answers for so many years, i just hate to start that again.
Very discouraged tonight. You're right about the exercise and I need to lose weight, but it's so tough when everything hurts..
Anne

Cindy Brown said:
Anne I think both responses have merit. One of your other conditions, especially suspect would be the fibromyalgia, could be the culprit. You may need to have your pain meds adjusted or find new ones. You may find that you hurt less if you move more. I know that's easy to say and oh so hard to do. Of the people I've seen with fibromyalgia the ones that engage in routine exercise feel the best. I would have to say, however, that maybe because your CPAP affords you the opportunity to sleep deeper and longer you're just not moving in your sleep like you used to. Also if you're on any meds that may tend to lengthen deep sleep or inhibit REM sleep your body may not be getting the cues to move. We generally shift positions at the end of a REM cycle. If you only have one REM and it's at the end of your sleep that could mean you haven't moved all night.
Hi Anne, Hang in there. It is a cycle, not feeling good so you don't exercise...and because you don't exercise you don't feel good. I always wondered how one takes that first step to get out of the cycle? I don't know.. Maybe one morning you feel just a tiny bit better, just enough to take a small relaxing walk, and then the cycle starts to be broken. We are all going through this with you in similar ways. I just keep telling myself that I will not quit and I will not stop trying to be healthy. No matter what it takes I won't give up. I am new to using the APAP as well. It has been a big deal to adjust to, but I just keep trying. I guess you could say, I am stubborn! Keep on keeping on.
I think that alot of time we concentrate on the importance Apnea and it's health effects on our bodies. Sometimes it is easy to forget that apnea denies us deep sleep(REM and SWS). Without this type of sleep our bodies never truly get to relax. We walk around in a constant tone or flexed state. At attention if you will. When we finally get deep sleep back into our cycles I believe that it may put our muscular and skeletal systems into a type of shock for 2 reasons. 1 they are getting proper o2 and circulation, and 2 they are getting to take a load off during the sleep rebound periods. i know that the fibromyalgia is probably affecting you anne, but your muscles could also be going through some sort of healing process not much different to the after effects of a very physical work out. Just my opinion though.
American Fibromyalgia Syndrome Association(AFSA) is a nonprofit organization dedicated to research, education, and patient advocacy for fibro. This website includes info about the group as well as pt resources.

www.AFSAfund.org
Thanks, Rock and Bee, for your input. You're right, it is a cycle. When you're sore you don't want to exercise, and not exercising makes you more sore. A friend was telling me yesterday that her fibro was at its worst before she lost about 60 pounds...the next step for me is to find a way to lose some weight. I want to swim -- it's the easiest on my joints -- I have to make that happen somehow.

I am starting a full-time job in the fall -- I've been working part time for years, but we really need the money and the benefits. I'm worried that I won't be able to do the work required because of the pain. I have to get better before then!!
Anne
You will. Just tiny little steps every day you will reach your goal of health.
Hey Anne,
I've been using my CPAP machine for about 2 weeks now, I also have fibro and I too am having a horrid time with increased pain and stiffness.

My theory is this - now that I'm using the mask I zonk out pretty hard and unlike before I'm unaware of the passage of time (for the most part) and also unlike before I'm not tossing and turning constantly. I think that laying still and in deep sleep for sometimes HOURS at a time is making my muscles super sore.

I'm not sure what the solution is but I'm thinking that doing some gentle stretching before bed and upon rising might help.

Also, if you don't already have one - go to Wal-Mart and pick up a memory foam mattress pad! Don't get the thin one, get one that's at least 3" thick. I've been sleeping on one for a couple of years now and it's made a big difference in my comfort levels at night.

Keep us posted on how things progress and DON'T GIVE UP!
-Elissa-

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