If fatigue doesn't improve I give up !!

[Spirit]

Hi everyone,
Haven't been visitng the forums much. I'm just severly stressed out !! When all was going so well, only to slide downhill. Now, I'm having an issue with my arm, disconnecting hose from elbow during sleep. I'm sleeping so wild, my cpap fell, hit the floor. Probably need a 12'-15' foot hose, for solution.

But my major complaint is fatigue !!!! Alot has improved, and so has fatigue, I'm no longer bedridden, but still not able to function, as I would like too. My energy is wiped out after 2-4 hours of activity. I'm in between fatigue and normal.

Had thyroid, diabetes & Vitamin B12 tested this month, all return normal. It's been nearly 6 months, and I just feel cpap is not working fast enough for me. It's very difficult watching each day go by, hardly no productivity. Boredom is driving me insane

Has anyone been bedridden from sleep apnea, return to normal ??

I feel like I'm in a coma, but awake. Mentally I feel fantastic, but the rest of me, feels like 3000 pounds, which has improved greatly from 5000 pounds. I go to bed, wake up feeling exactly the same, blah !!!!!!

Sorry, had to vent, but I'm about fed up with cpap. I have no problems using cpap, I look forward to using cpap each night, but the results are frustrating the he!! out of me.

It's like taking a med for diabetes, that hardly works.

I sure could use some encouragment.
Thanks

[elg5cats]

Hi everyone,
Now, I'm having an issue with my arm, disconnecting hose from elbow during sleep. I'm sleeping so wild, my cpap fell, hit the floor. ...major complaint is fatigue !!!! Alot has improved, and so has fatigue, I'm no longer bedridden, but still not able to function, as I would like too. My energy is wiped out after 2-4 hours of activity. I'm in between fatigue and normal. I feel like I'm in a coma, but awake. I'm about fed up with cpap. I have no problems using cpap, I look forward to using cpap each night, but the results are frustrating the he!! out of me. It's like taking a med for diabetes, that hardly works. Thanks

Your encouragement is that you have found some improvement. I'm a little confused, are you removing the mask at night...if so, this may be reducing your treatment benefits. What's going on with the rest of your sleep hygiene? Also, diabetes can cause fatigue and effect how you feel mentally, is your glucose elevate or low enough to be a part of your problem. Sometimes, OSA may be one cause of fatigue and mental fog.....do you think it's possible that is what is going on with you?

elg5cats

[Spirit]

Hi,
Thanks for reply. No mask removal at night. Just occassional hose disconnect from elbow. I'm sleeping fantastic, but wake up feeling, blah !!! I do much as I can during the day, but lack of motivation is crippling. By nightfall, I'm wiped out !!! Only have energy, few hours a day.

I was suspicious of other medical conditions, contributing to fatigue, but no medical deficiency other then apnea has been discovered. Doctor has performed blood labs for fatigue, all return normal. I've been tested for adrenal fatigue, thyroid, diabetes, vitamin deficiency, etc....

Reason, I'm so frustrated cpap treatment is painfully slow.
Thanks

[DoriC]

Do you have the software that might tell you what's going on? The "wildness" and fatigue you're experiencing might be caused by apneas and leaks or perhaps the wrong mask. Do you have a Dr monitoring your progress who might suggest a pressure adjustment and/or a different mask? Sorry for the questions, just trying to help.

[Gerryk]

Spirit you said your no longer bed ridden. Have you talked to your doctor and asked if it is ok for you to walk some? I am not talking from one room to the next, I am talking about outside. Most people find that mild exercise actually gives them more energy to the point they can get in a little more exercise with even bigger returns.

Do a google search and look at some of the info on the web about 10,000 steps. It is about walking taking steps and using a pedometer to count them. Starting off one week just doing normal activities wearing the pedometer and keeping track of your daily steps, then the second week go outside or to the mall or anywhere you can walk and try to add 10% of last weeks total to this weeks. When ever I have gotten back into exercising I remember why I love it so much. It's all that energy I have and the great feeling I get.

Gerry

[guets]

I hope that you find a simple solution to your problem like an iron deficiancy which should have shown up in the blood work, but is a question to as your doctor it can cause the symptoms you describe. The other thing that could be causing your issue is lack of excersise, I know sounds like a stupid idea if you just feel blah but you might start a mild program like walking around your house or yard and increase the time as you go.
The only other medical issue I can think of is depression it can cause all of the symptoms you are having and many more. If your doctors have not brought this up with you than they certainly should have. Unfortunately no tests lab or otherwise can diagnose depression but even in its mildest form it causes a person to feel BLAH. The good news is that your doctor can subscribe medications to see if that is your problem.
Hope you start feeling better but I don't thinks stopping your cpap is the answer.

[kteague]

I am so so sorry to hear you are still going thru this. I'm gonna throw out some questions, like beating the bushes to see what flies out. Have you ever posted a snapshot of your diagnostic and titration study results here? Just wondering if some astute in these matters might see a clue. In a prior post you said there were no limb movements. Was that the result in both of your reports? Could you have developed them after getting your cpap treatment optimized? You also said they ruled out narcolepsy - so you had an MSLT nap test? If so, have you posted those results? Seems to me that in view of your persistent debilitating symptoms that another sleep study with you using your cpap and familiar mask might be helpful.

About your sleep - do you have trouble going to sleep, staying asleep, or sleeping too much? Do you catnap around the clock? (That's what I used to do.) Sorry to bombard you with all the questions, but it just seems there has to be some answers for you. I know everything your doctor has checked thusfar has been negative. With every negative result, ask your doc what is next. A negative result is not an aswer to what's wrong, just what's not.

Feel free to come here to sort thru your feelings. We may not have the answers, but we have a concern for your well being.

Kathy

[Scarlet834]

Do you have the software that might tell you what's going on? The "wildness" and fatigue you're experiencing might be caused by apneas and leaks or perhaps the wrong mask. Do you have a Dr monitoring your progress who might suggest a pressure adjustment and/or a different mask? Sorry for the questions, just trying to help.

I agree with this. In my case just a small pressure adjustment made all the difference. You mention feeling not quite as fatigued as before, but not normal. That's exactly what I experienced before the therapy was optimized. Perhaps you have experienced some elimination of apnea events but are not yet in the normal range. The software can confirm this (or even the panel on your machine if it displays AHI).

Everyone has offered some great ideas. I hope some of them will work for you.

[Spirit]

Hi doricC,
Thanks for reply.

Do you have the software that might tell you what's going on?

Yes, I do have the software, but no reader. Cannot afford one at the moment.

Do you have a Dr monitoring your progress who might suggest a pressure adjustment and/or a different mask?

Yes, I have a sleep doc, but only seen him once in 5 months, and no new appts scheduled. Last time, I saw him he reviewed data and shared cpap is working excellent.

[Spirit]

Hi Gerry,
Thanks for reply.

Spirit you said your no longer bed ridden. Have you talked to your doctor and asked if it is ok for you to walk some?

Never talked to doc about walking. But I do make an effort everyday to walk. The few hours a day, my energy is decent, I get out of the house and walk around shopping centers, etc.... Then when I return home, I'm wiped out !!

When I do try to exercise on my treadmill, I get wiped out afterwards, I'll lay in bed an entire day recovering, after walking a mile. My body feels super heavy, although I haven't gained any weight.

Just seems whatever energy my body develops, gets depleted fast then crashes. Exercise is suppose to increase energy, but for me works completely the opposite. Makes me feel worse, not better.

Do a google search and look at some of the info on the web about 10,000 steps.

I'll check it out.

[Spirit]

Data from last night:
Leaks: 0.00
AHI: 6.8
AI: 0.00
HI: 6.8

My data alway's looks this way, alway's positive HI data, no AI,. I just don't know anymore. Thanks for everyone's help. What I am experiencing does not seem common amongst cpap users. I have even slept without my cpap [experiment), and felt no different then using cpap. So I don't see benefits of using cpap. Could be doing more harm then good, forcing air down my throat.

Now if i would have felt worse, after not using cpap, then I could understand the benefits of cpap. Sorry for being so negative, but there is nothing positive about my experience. 5 months on cpap, and I'm still struggling just to function.

No one likes to discuss the negatives of cpap treatment, and tries to be positive all the time, which is understandable, but what I'm experiencing is real. It's very hard for me to ask questions, cause no one can relate to fatigue. It's like no one ever experienced fatigue.

Forum has been very informative on the use of cpap, but not pertaining to symptoms.

If anyone knows of a forum, that can assist me with apnea fatigue, please share or pm me.
Thanks

[KatieW]

Spirit, is your fatigue related to the equipment problems you were having? Were you doing ok before that? You're probably to tired to answer any more questions right now, but I think we're all concerned, and trying to help you, if we can.

I was extremely fatigued before treatment, and would never want to go back to that feeling again.

Sleep well tonight, and I hope tomorrow is a better day.

[tillymarigold]

So you've been on CPAP only 5 months?

If you were bedridden from the apnea, I'd be very surprised if you'd repaid the sleep debt already at 5 months. 3-6 months to repay sleep debt is normal, but it seems like your symptoms were worse than most people--actually worse than I've ever heard of, I'd never heard of anyone being bedridden from it. My apnea is pretty mild but it still took me 4 months to repay the sleep debt (literally woke up one day and the fog was gone and my BP was lower, and I was like "oh, that's what they mean by 'repaying sleep debt'") ... and once I had, I realized how horribly out of shape I was, and had to start working on that. But fatigue from being out of shape was very different from fatigue from apnea.

[ozij]

Spirit, I"m not saying this as criticism -- rant ahead, we need to do that sometimes, but, do you realize you're having a tantrum?
And being irrational?

But my major complaint is fatigue !!!! Alot has improved, and so has fatigue, I'm no longer bedridden, but still not able to function, as I would like too. My energy is wiped out after 2-4 hours of activity. I'm in between fatigue and normal.

I have no problems using cpap, I look forward to using cpap each night, but the results are frustrating the he!! out of me.

I feel like I'm in a coma, but awake. Mentally I feel fantastic, but the rest of me, feels like 3000 pounds, which has improved greatly from 5000 pounds. I go to bed, wake up feeling exactly the same, blah !!!!!!

Reason, I'm so frustrated cpap treatment is painfully slow.

Do you want to go back to being bedridden and feeling like 5000 tons?

Will stopping CPAP make it any better? Will threatening to stop therapy make things speed it up?

I wonder if that rant isn't actually a positive expression of additional energy.

Remind me, Spirit, how long since you discovered the seal on the humidifier was torn, and you were not getting proper therapy?

If you think you suffer from "apnea fatigue" try to get that HI down. Your machine doensn't distinguish an obstructive hypopnea from one that can be safely ignored. An HI of 6.8 and continued fatigue mean you're not getting proper therapy. Try to get that HI down.

[Spirit]

Spirit, I"m not saying this as criticism -- rant ahead, we need to do that sometimes, but, do you realize you're having a tantrum?
And being irrational?

No. But I will admit expressing frustration/health stress.

Will threatening to stop therapy make things speed it up?

I'm not threatening to stop therapy. If I don't get results soon, I will stop therapy and file a complaint to my sleep doc. I have read many stories of people tossing cpap treatment to the curb. I mean, how else am I suppose to think, if there is no solution to what I am experiencing. It's like I'm beating a dead horse into the ground. And forum members are getting tired of reading about it. And I'm tired of feeling as if I'm the only one, that experiences fatigue.

How long since you discovered the seal on the humidifier was torn, and you were not getting proper therapy?

That was a minor adjustment, still doesn't answer my question to long term fatigue. I live alone and no one to depend on. Although sleep doc approved disability, I was denied disability by Government assistance, and need to pay my bills, and cannot do so, feeling too fatigued to work. So I express alot of frustration, and also very impatient at the speed of cpap treatment.

How does any human being expect someone to live with this condition and no assistance?

Thanks for all your help.