How disabling can apnea be? Anyone disabled by fatigue?

[CAsleep]

It is unclear is obstructive apnea is my only problem or not.

I had a sudden onset illness that was "Mono-like" 8 years ago, and have never really recovered. Since then, I have basically had "chronic fatigue syndrome," where I sleep for too long, and am exhausted during the day. It is so bad that I am on disability, unable to go to school or work.

It seems like some people here are not that disabled...like you can still get up, work a job, etc. For me, it's not even possible (not a matter of "toughing through" the fatigue). I have tried, many times, to have a job. It always falls apart because of the oversleeping and the tiredness. In fact, my husband and I don't have children yet because of my health issues. I am not in a position to take care of anyone else, as I barely get by.

Anyways, I was wondering if I am stupid to think that the apnea could be what is causing this level of disability? Is that possible? I would call my Chronic Fatigue Syndrome at this point "moderate"....because unlike some people with CFS, I can get out of bed, cook meals, and run errands on occasion, go to a wedding, if I rest up and prepare accordingly.

[mrstevegross]

Yep, it certainly could be apnea. There are also lots of other causes (a mix of psychological and physiological) that contribute to sleep problems. The hardest step--in my experience, anyway--is admitting to yourself "this thing is a problem and I'm going to need some help addressing it". Sounds like you may have reached that point. If you've got a doctor, get a referral to a sleep specialist and do the sleep study. You may be surprised at the results. I was absolutely convinced the problem was in my head, and resisted seeing a doctor for a looooong time. Then I finally did, and it turned out to be a respiratory issue. Good luck!

[CAsleep]

Thanks!

I already have done two sleep studies actually, and have the diagnosis of "low end of moderate" obstructive sleep apnea. The nurse practitioner told me that the OSA could be the cause of all my fatigue, the reason I've dropped out of college, etc.....

....but frankly, my level of functioning is so low, that even hearing it from her, I am skeptical this could be the cause of the fatigue. And the fact that I didn't start feeling better overnight with my CPAP (though granted I haven't worn it more than 3 1/2 hours) dashed my hopes a little that this could be the answer. Though I do realize for some people it takes time!

I think I'm just in disbelief that apnea can cause this much damage to someone's life....and also, I have had diagnosises (spelling?) before that didn't pan out as helping. I would like to hear that this could be the cause though....praying it is!

I have investigated MANY other causes of fatigue/CFS up to this point...have tried antidepressants and all that. So far not much has panned out, so I'm hoping this is it.

[mrstevegross]

Thanks!

I already have done two sleep studies actually, and have the diagnosis of "low end of moderate" obstructive sleep apnea. The nurse practitioner told me that the OSA could be the cause of all my fatigue, the reason I've dropped out of college, etc.....

....but frankly, my level of functioning is so low, that even hearing it from her, I am skeptical this could be the cause of the fatigue. And the fact that I didn't start feeling better overnight with my CPAP (though granted I haven't worn it more than 3 1/2 hours) dashed my hopes a little that this could be the answer. Though I do realize for some people it takes time!

I think I'm just in disbelief that apnea can cause this much damage to someone's life....and also, I have had diagnosises (spelling?) before that didn't pan out as helping. I would like to hear that this could be the cause though....praying it is!

I have investigated MANY other causes of fatigue/CFS up to this point...have tried antidepressants and all that. So far not much has panned out, so I'm hoping this is it.

Your response is actually pretty normal:

* You've done a sleep study, which has demonstrated a measurable respiratory component to the sleep problem.
* Your CPAP compliance is low, which is really normal for most people. You'll see on this forum that there are tons of people who spend awhile trying to find a mask they like. (I'm no exception: mask #1 was terrible and I couldn't stand it for more than 2 hours; mask #2 is great and very comfy!)
* You've investigated lots of other possible therapies.
* You're "in disbelief" that the apnea could be the root cause of the problem.

These are all very normal reactions. My suggestion is this: Give the CPAP some time; try a bunch of different masks until you find one that is comfortable. Read the forum a lot, and post your questions as they come up. Believe it or not, things can indeed improve!

[CAsleep]

Thanks, haha...you nailed it.....disbelief!

Reading my post, I was thinking, yeesh, I'm in denial. Not just a river in Egypt.

Thanks for the encouragement.

[Hawthorne]

I have Rheumatoid Arthritis, which has a fatigue factor of its own. I was diagnosed with RA about 20 years ago and then daignosed with sleep apnea about 8 years ago. I had reported to my Rheumatologist that I was having more or different fatigue and she suggested I have a sleep study.

My sleep study showed severe sleep apnea. I still have the RA fatigue but it is different. I had learned to function pretty well with the RA fatigue and, since starting cpap, I am there again. I sleep better and am better able to cope with RA pain thanks to cpap.

I have a fully data capable auto machine and the software so can keep track of exactly what is going on in my sleep. I do very well in managing my sleep apnea and my RA. Having the data, shows me that I have very few events msot every night and I know that I am helping my body to deal with the consequences of untreated sleep apnea - stroke, heart attack, high blood pressure, etc as well as helping with the sleep apnea fatigue.

I was not "disabled" by fatigue but by the RA, meaning that it made it impossible for me to work after a year or so (pain plus fatigue). I can still do what I need to do and what I want to do pretty much as long as I pace myself. Cpap therapy has helped that. Had I not found out that I had sleep apnea and gotten treatment, I would have been really disabled by the "double" fatigue so to speak!

I don't know if this helps or not but you do have a "double whammy" with fatigue as well if you have CFS and sleep apnea.

[carbonman]

Reading my post, I was thinking, yeesh, I'm in denial. Not just a river in Egypt.

This "club" that God and the Universe has chosen for us to be in
is serious business. What we are dealing w/is a matter of life and death.

I realized early on that it is much more than the mechanics
of blowing air up your nose. It's about a journey into ourselves,
to help us learn who we are and what we are about.
To help us learn what our strengths and weakness are.
To help us learn what are limitations are.
.....and in the end, how to use those strengths to overcome
the weakness'.....how to go beyond our limitations and
expand our horizons.

When I see myself reflected in the replys to my posts,
I realize that all of those things have been granted to me.

My journey began as most do...it was not easy.
With the help and guidance and support and encouragement,
I have increased my strengths,
seen more clearly my weakness',
expanded my horizons,
and grown.

I think that had I never found this group....family and
had been successful, it would have been a hollow success.
Through the sharing of our trials and tribulations,
failures and successes....our efforts are validated and more worthwhile.
Each of us does earn it. Each of us, in the dark of the night,
makes the journey on our own. We toil alone, but always
with the thought that many are in support of us and pulling for us.

One of my daily montras is:
I want to motivate others,
and be motivated by others.

Have we some how been blessed in being in this club?
In many special ways, we have.

[kteague]

Yes, sleep apnea can be incapacitating. It can increase one's sensitivity to pain, drain you of all physical and mental energy, and leave you too depleted to have energy for life. I speak from experience. When the sources of symptoms are elusive, then we need to be methodical about addressing them. You have sleep apnea, that much you do know. You need to diligently and consistently treat it. Now, diligence and consistency can be a struggle while getting used to this, but prolonging the adjustment phase will mean you miss out on more of your life and do harm to your body and brain. Once you have mastered the mask issues, are getting therapeutic treatment every second you are asleep, and are getting adequate sleep every night for at least several weeks (maybe months), you can reasonably expect to tell some functional differences. If you are left with residual symptoms, then address those too. Other sleep disorders can co-exist with apnea, I have Periodic Limb Movement Disorder, which still affects the quality of my sleep and must be treated. Many illnesses outside the realm of sleep can be to blame too. But once the apnea is resolved, the residual symptoms list should be more concise and make it easier for the doctors to target testing. Keep in mind, nothing looks rosy with untreated sleep apnea. So take the words of others who tell you it will be worth your efforts to do this, and that it will give you the physical and mental resources to deal with any other remaining issues.

[Janknitz]

I think that you have to get fully optimal therapy before you can judge how much of your fatigue is "simply" Sleep apnea and/or what other comorbidities may be a factor. In other words, optimal treatment will remove the sleep apnea element, and then you can see where you are.

What do I mean by optimal treatment? I mean using the CPAP for every minute you sleep, sleeping enough hours (7 to 9) each night to get full benefit, and having an AHI less than 5.

That's what you have to work toward, one step at a time. You need to look at why are you only tolerating the CPAP for 3 1/2 hours. Are you having mask issues, leaking, or is the machine bothering you? Pick the biggest problem and ask here what you can do to improve things.

You can't judge whether or not CPAP is effective thereapy until you can use it effectively. Unfortunately, it doesn't come easily for most of us. Once you are getting effective treatment, then you can see what issues remain and perhaps they will be more amenable to treatment with the big issue of sleep apnea tamed.

[Rogue Uvula]

Stick with your CPAP and make it your friend. There is no doubt that it will help you!
Ultimately, in a few weeks you will know the extent of that help (and let us know!).

[SleepyRae]

This sounds sort of similar to me. I had a case of chronic tonsillitis about 5 years ago. I never had tonsillitis before then (and not since), but it took months to figure out the right treatment to knock it out. Since then I have been tired all the time. I was already thinking of leaving my job, but after this I was so tired all the time and my absences got so bad I had to quit before I got fired. I haven't had a job since. Some days, I can push, some I can't. There's not much of a way to keep a job not knowing when you'll have a bad day (a few times a week..) I lived like this for 4 years, thinking it was just me, maybe I was being lazy, lots of negative thinking. I would push myself so hard on my good days that I'd usually knock myself out for the next 2. My husband's been doing the same (but he has an awesome boss and has been able to keep his job!) We finally decided to go to the doctor and tell him that we had serious fatigue.

I was soooo in denial that apnea could be the problem. I wanted to see this through, almost to prove that it couldn't be apnea. My first sleep study, they told me I slept for less than half an hour total. Once the results came back I found out I had 49 episodes an hour! Whoa! Second sleep study showed super improvement with the CPAP. Husband's gone through the same and also needs CPAP. I've only been at it a week today, but there is a weird sort of improvement. I felt great the first and second morning...not so much the past few. But overall, I feel like I can push just a little more. My muscles ache just a little less. If I need to get up and go do something, it's still not great, but I feel like I can get through it. And honestly, I think I've been getting LESS sleep as I'm getting used to the mask and all, but I feel better than if I had slept straight through (or what I used to think was straight through!)


so long story short, yes, apnea could definitely be the problem! And hopefully CPAP will be the solution for both of us!!

SleepyRae

[Tovi]

I agree with Jankitz that you need to try it and see. I generally have that philosophy about treatments that don't have any risk and there's very little risk associated with CPAP.

I also agree with Hawthorne. I have a number of factors that contribute to my fatigue. I have dystonia which I've had since birth. However, before a number of other things happened, I had a full-time job, plus a part-time graduate student, and was generally very active. As I start to tackle each issue, I can feel the difference between the different types of fatigue. When I wasn't dealing with any, everything mushed together into dysfunction. I still have to parcel out what I do each day, but as I get better, I can slowly do more.

CPAP has a steep learning curve. And in the beginning I had to trust that I'd see some benefit. Once I got the mask right, which took some doing, and started getting AHI less than 5, I started seeing benefits pretty immediately. But it took about three weeks of me going back and forth with the sleep techs to find the right mask. I also see the benefit now when I mess up and not get CPAP and then I'm back to needing to lie down in the afternoon and forgetting things. I'm still working on fixing my mouth breathing, so still am not receiving the full therapy. However, after two months, I can definitely say that a big factor in my fatigue is sleep apnea. And since sleep is so important in repairing and balancing the body's systems, eventually I might see improvement in my dystonia and other issues.

[DreamOn]

Thanks, haha...you nailed it.....disbelief!

Reading my post, I was thinking, yeesh, I'm in denial. Not just a river in Egypt.

CASleep, perhaps this article ("Seven Stages of CPAP and What Is Feeling Good?") will help you: http://smart-sleep-apnea.blogspot.com/2 ... at-is.html. I found it comforting to know that the way I was feeling after I received my sleep apnea diagnosis was "normal," and it helped to know what to expect as I worked through acceptance of my condition and adjustment to CPAP therapy.

The degree that each individual is affected by sleep apnea varies enormously. My sleep apnea was classified as mild/moderate (depending on sleep position), but I had it for many, many years so it did a lot of damage to my body. I didn't feel the overwhelming daytime sleepiness that many here do, but it did damage my cardiovascular/circulatory system and brain! Thanks to CPAP, I am happy to report that my memory and cognition are very much improved. I no longer fall asleep in the early evenings, my blood pressure is down, I don't need to get up during the night to urinate, and I no longer have heart arrythmias. I sleep well for 7-8 hours each night.

It isn't always easy, but this therapy can truly change your life! There are so many success stories on this forum, but the one that I find most inspiring is Spirit's journey. He had been bedridden before starting CPAP therapy. Therapy had helped somewhat, but he continued to struggle for months. He was ready to give up numerous times. Finally, he found what worked for him. His story illustrates that perseverance is often needed, but success is just waiting for us. I hope you will take some time and read these two "before and after" threads that chronicle Spirit's difficult journey: viewtopic.php?f=1&t=49037 ("If fatigue doesn't improve I give up !!") and viewtopic.php?f=1&t=52402 ("A miracle has happened - CPAP works !!"). There is always hope!

[BlackSpinner]

Actually the fatigue is only the most obvious symptom and not always the most destructive one!
The low oxygen during the night is doing a number on your organs and brain - the damage may not be apparent until years down the road.

[chunkyfrog]

I'm curious to see how much better I can feel,
Now that I have discovered this wonderful tool
That brings to me the bliss of sleep
And the healing that comes with it.
The sci-fi look was unexpected
For bed.
--But it works.