Slept 14 hours straight still tired

[Spirit could not log in]

Hi,
I know patience is the key, in recovery. But no matter how much I sleep or how perfect my data is, I'm still physically tired. I am not mentally tired, which is a major improvement from brain dead status. But physically, I feel exhausted !!!

I slept 14 hours solid last night, now wide awake and alert, but when I try to walk around, or do anything active, I feel like 1000 pounds. Can anyone relate, to my description ??

My thyroid is working perfectly, all my blood labs alway's return in the normal range. So the only thing, I can figure is sleep apnea or I'm still enduring the damages of Klonopin, after I stopped taking 32 months ago.

All physical activities become an effort, then afterwards, I'm wiped out. I'm just tired, but wide awake. I feel so much better, laying down. Standing up is an effort. As long as I'm laying down, I'm fine. But if I have to get up for anything, it's like a ran a 50 mile marathon, just walking to my kitchen.

Lots of improvements have occured, but I'm still physically tired. Been on cpap for 4 months. I don't require naps anymore. When I used to feel tired, I would lay down and take a nap, but now when I lay down to take a nap, I'm wide awake. And boredom drives me nuts !!!!

I think what makes this so hard is, I live alone. I have no one to help me. Such as today, I need to get groceries, but too tired to walk 50 feet. I don't go, I don't eat. So I have to force myself, beyond my limits to get groceries. This really sucks !!!!!!!

Doctors do not understand the complications, of those that live alone and feel tired !!!

Well once I can log in, I need to start a topic, for those that live alone, through recovery.

Very difficult to explain.

[rested gal]

Have you or any of your doctors considered Chronic Fatigue Syndrome?

https://health.google.com/health/ref/Ch ... e+syndrome

http://www.mayoclinic.com/health/chroni ... me/DS00395

As I'm sure you know, "CPAP" isn't a magic bullet for everything that could be a health problem causing fatigue or being extremely tired.

However, since you have Obstructive Sleep Apnea, you definitely should keep on using CPAP so that you are at least taking care of your OSA. Not feeling energetic doesn't mean that CPAP is not doing its part of the job. Nor would not feeling better mean that CPAP is useless or not needed.

I'm sorry you're going through whatever it is that is continuing to make you feel so worn out, Spirit. You're doing a very good thing for yourself by sticking with "CPAP." Hope a doctor will be able to get to the bottom of your fatigue problem soon.

[Julie]

Hi, sorry for your awful night (or day I suppose). We would like to help, but need you to tell us what equipment you're using, the FULL name on top of your machine, what kind of mask you're using, where is your pressure set. And have you anyway (or anyone) to let you know whether your mouth opens once you're asleep, letting all the good air out? Also, are you prone to GERD (acid reflux) because that can make a difference too. Fourteen hours is not a good thing - it means your body was still having lots of apneas and trying to catch up on sleep to counteract them, but it doesn't work of course, unless the apneas are stopped.

[Spirit]

Have you or any of your doctors considered Chronic Fatigue Syndrome?

Hi rested gal,
I was tested for adrenal fatigue, blood, urine and 24 cortisol. All returned normal. Diabetes normal, everything is normal. Only test showing abnormalities was sleep study. Doctors tested everything from head to toe. I've had a heart stress test, cath showing no blockage, echo, ultrasound, all return normal, cardiologist shared I had a heart of an athelete. I've had Pulmonary test, endoscopy, GI test, and the list goes on, every test returned normal.

My sleep doc shared, my treatments are working really well, past 3 month avg showed AHI of 4, I check leak rates everday, 0.0 to 0.6,. I sleep with no disturbance, I dream almost nightly, I sleep 8 hours or more.

I'm to my wits end, as to what is causing the fatigue. Other then Klonopin damage. Maybe my nervous system is a wreck. But I don't experience any anxiety, etc.... All those symptoms disappeared. I'm fine, I just feel physically tired.

I feel like I'm walking up, 100 floors of stairs, instead of just walking.

I've tried vitamins and all types of suggestions from people/doctor, nothing works.

I surely hope, I can find an answer soon, or someone that could relate. I was improving so nicely, then setback, I'm fatigued beyond belief again.

[Spirit]

Hi, sorry for your awful night (or day I suppose). We would like to help, but need you to tell us what equipment you're using, the FULL name on top of your machine, what kind of mask you're using, where is your pressure set.

Hi Julie,
Thanks for sympathy. My equipment is listed in my profile, my pressure is set to 9cm,. I couldn't log in earlier, but Admin resolved the issue. I was doing really well on treatments, then all of the sudden around 2 weeks ago, feels like I'm going backwards, to the point I felt when I first started. A zombie !!! Only I'm mentally alert.

I don't spend my entire time awake, trying to keep my eyelids open. Now that's great news !!!

Doctor shared to give the treatment a chance for 6 months. But so tired of being alone and fatigued, with occasional visitors, and no assistance. Everytime this happens.

Thanks for support.

[Muse-Inc]

Hey Spirit, what happened to your numbers starting 2 wks ago? You are logging your daily numbers...right?

PS It took me 9 months for my energy levels to rise enough to do more than a few mins on my exercise bike; everything was tiring, then it got better and better.

EDIT: my sleep doc and cardio both said some folks go a yr before CPAP therapy bennies kick in...be glad you're not one of those folks!

[Julie]

Spirit - I sent you a PM, but I'm not sure if you got it because my "outbox" looks like it's hanging onto mail instead of sending it, so could you please let me know? Thanks!

[Spirit]

Hey Spirit, what happened to your numbers starting 2 wks ago? You are logging your daily numbers...right?

Hi Muse,
Hope your doing well? I no longer, check my data, haven't done so in weeks. I do check leak rate, but I stop keeping track of data, well cause I started feeling better, after I changed over to the Quattro mask.

Just this past 2 weeks, has been a real struggle for me again, as if I'm starting all over again. Mentally I'm awake and alert, but physically just feel like laying down all the time. No energy to walk, stand etc......

Maybe I'm being too hard on myself, but just the setback, has discouraged me, cause I was doing so well, and now I'm back to the walking dead syndrome.

I get really concerned, when I'm too tired to eat. But hopefully this phase will pass.

[Spirit]

Spirit - I sent you a PM, but I'm not sure if you got it because my "outbox" looks like it's hanging onto mail instead of sending it, so could you please let me know? Thanks!

Yes, I got it and will reply Wendsday.

[fidelfs]

Spirit,

I think you are a male, but I don't know your age. I have some illnesses with overlapping symptoms. I have sleep apnea, Hypothyroid and low testosterone.

Before I had my sleep apnea machine, I was sleepy but not tired, only extremely sleepy. With Androgel I am taking care of the energy.

Have you checked your Testosterone levels?

[Spirit]

Current sleep data results. 14 hours of sleep.

Leak: .02
AHI: 5.6
AI: .8
HI: 4.8

[Spirit]

Spirit,

I think you are a male, but I don't know your age. I have some illnesses with overlapping symptoms. I have sleep apnea, Hypothyroid and low testosterone.

Before I had my sleep apnea machine, I was sleepy but not tired, only extremely sleepy. With Androgel I am taking care of the energy.

Have you checked your Testosterone levels?

Hi fidelfs,
I'm 47,. No medical history till sleep apnea. No, I never had my testosterone levels tested, but probably would return normal, like everything else. I'll ask my doc, what he thinks next visit.

When I first recieved my machine, I was sleepy too, constantly wanting to fall asleep, yawning all day long, and taking naps. But no longer experience the sleepiness. Just fatigue.

My thyroid is enlarged, but thyroid labs are alway's normal, in the perfect range, free T3/T4 in perfect range. But I have thyroid symptoms sometimes, my hands/feet get frozen, even with normal house temps. I was put on synthroid last year, to reduce thyroid swelling, and a week later I ended up in the ER, with super low TSH level, think it was like .08, can't exactly remember. But my TSH did a nose dive. I'm still suspicious my thyroid may be playing tricks on me. But sleep doc advised that I give cpap at least 6 months, before he investigates my thyroid further.

Thanks for suggestion.

[OCNorsk]

The trouble with thyroid norms is that what you need to be normal may not be what the charts say they "should" be. I am like the poster child for low thyroid, but all my tests are normal.

I was taking red rice yeast (for cholesterol--it's a statin), just one pill every other day. I felt fine, except my legs and arms felt so weak I couldn't do what the rest of me wanted. I stopped taking that and felt a lot better. Also, it's probably colder in Texas than Southern California, but I try to leave a door or window open for a little bit each day just to get some fresh air in. If your house is closed up all the time it can get kinda toxic. Could you possibly have a carbon monoxide issue in your house?

And one last possibility. If I spend too much time in front of the computer, it really wipes me out. I also took my laptop out of the bedroom and I don't have any DVR or anything like that in there. I know it may sound a little strange, but it has helped.

[Spirit]

Hi OCNorsk,
Thanks for the input. If your labs are normal, then how were you diagnosed low thyroid ?? I've read where patients had normal labs, but treated according to the symptoms expressed by the patient.

I told my Endo, my thyroid enlarged for a reason, although my labs are normal. He shared thyroids can enlarge for any reason, or no reason at all. That was alot of help.

Well I do admit, I'm on the computer for hours at a time, cause I don't have the energy to do much else.

As for the toxins, I keep my home open, I hate feeling stuffed up. So windows/doors open all day, windows cracked at night. I smoke outside, unless it's super cold, and never smoke in the house, without a open window and ceiling fan going. I need to quit, but stress is not allowing me too.

But I do need to investigate my thyroid further. My sleep doc suggest to wait at least 6 months, and if no improvements are showing, then he'll look into my thyroid.

[ozij]

Spirit, what's you mahcine set on?
Some people's sleep get interrupted when the machine changes pressure. The sleep better when their machine is on fixed pressure.
Have you tried a single pressure?