Anyone Else Have Felt 'Crippled' By This Stupid Disorder?

[Kabuto]

Hi all,

So I've been diagnosed with sleep apnea since I was 21, but I was tired even in high school.

As of late, I've accepted that I need to use my CPAP machine...but even after consistently using it, I still feel tired. I try to keep the mask on my face, and I'm also now going to try chin straps to keep my mouth closed.

But...has anyone else felt SO crippled, with or without the CPAP? I mean, I've been so tired I haven't even been able to hold down a job. Is this normal? Is there anything I can do?

With this level of lack of functioning, sleep apnea has felt like a totally dehabilitating disorder. So why does it almost seem that many take it lightly? Or that many seem to function okay, even without the CPAP?

[Goofproof]

Crippled to me is having your leg blown off be a IED, Or being born with no arms, because your mom took a bad prenatal drug, or being born blind, it's not being tired, being tired is a natural part of life for those that have to work. Jim

[Kabuto]

Crippled to me is having your leg blown off be a IED, Or being born with no arms, because your mom took a bad prenatal drug, or being born blind, it's not being tired, being tired is a natural part of life for those that have to work. Jim

Yes what you said is true, but I've felt like abnormally ridiculously tired, to which I've been so exhausted I can barely leave the house.

Yes, clearly I am born healthy- with no IED, nor no arms, nor blindness- nor am I some starving kid in Africa. And I'm thankful I am spared from suffering that extreme- of course.

But with the level of exhaustion of barely being able to function- yeah it's been a struggle enough, an absurd strain on my functioning. And unlike a handicapped person, most aren't even aware of the struggle .

I've been trying to figure out if there's been another cause to this absurd level of exhaustion. Tested my Vitamin B, D, thyroid, and am about to get my hormones checked. Because this is ridiculous.

The only thing I can think of is maybe sleep apnea is harder for people who've had it their whole lives versus someone who first develops it in their 40s? A lifetime of oxygen deficiency that built up over time?

[Arlene1963]

As of late, I've accepted that I need to use my CPAP machine...but even after consistently using it, I still feel tired.

Hi Kabuto,

If you are treating your sleep apnea and still feel tired I suggest that you continue to explore other reasons for fatigue. You mention that you've had your thyroid, Vitamin D etc checked and are also having your hormones tested, this is a good start. Also, consider that depression could be a factor.

[zonker]

hi, kabuto! looks like you joined here last year, so i assume you've been on cpap for that long.

what i'm thinking is that your therapy hasn't been optimized. you can help the people of this forum help YOU by going to the control panel and filling in your equipment. they would also need to know what your pressures are and so forth.

no, i don't feel crippled by sleep apnea. i didn't start on cpap until i was 60. and once i was a year in, i started to feel much better.

that was because i sought help on this forum. people were able to give me advice about what i was going through and how to tweak things to eventually improve my therapy.

let them help you improve your therapy too!

[chunkyfrog]

If your tharapy is optimized--And you use cpap CONSISTENTLY,
it may be time to start pressing your medical team to go after what ELSE is wrong.

[Julie]

Are you still on whatever pressure settings the DME programmed? Those are usually so low as to be useless... maybe it's time to bump yours by 1-2 cms and see how you feel after 1-2 nights.

Wish you'd have gone to your previous thread and tacked todays' on so we could see/remember what else went on... have you been checked for other incidental problems with bloodwork, cardio testing, sugar, etc?

[kteague]

As of late, I've accepted that I need to use my CPAP machine...but even after consistently using it, I still feel tired. I try to keep the mask on my face, and I'm also now going to try chin straps to keep my mouth closed.

When you say "as of late", how long have you been consistently using the machine? Even if it's been a while, if you were mouth breathing, your treatment may not have been therapeutic. If you "try" to keep your mask on that says to me sometimes you take it off. How much do you sleep without the mask? Hopefully you will be able to #1 Optimize your treatment, confirmed by your data. #2 Use the optimized treatment without fail. #3 Rule out other medical causes with your doctor. Only then can you reasonably expect significant progress in how you feel. If after some weeks you don't begin to feel better, I'd consider asking your doctor about doing an overnight study in the lab while using your machine at the proven effective pressure. Another sleep study without the machine won't tell you what's happening when on the machine. You need to know if anything else is interfering with your sleep beyond sleep apnea. Are you prone to limb movements (usually feels like just really restless sleep)? Is your tiredness accompanied by sleepiness? It wouldn't hurt to ask your doctor if your symptoms give any reason to suspect narcolepsy. If he wants to test for that, you'll want to have mastered your CPAP treatment so the waters aren't muddy. All sleep problems can have some overlapping symptoms so getting the sleep apnea resolved will give a clearer picture.


Based on my personal experience, untreated sleep apnea was debilitating and did interfere with my ability to perform my duties at work. My first 5 months my treatment was not optimized, and the inadequate treatment did nothing to stop my downward spiral. Once my settings were working for me, my turnaround began. It was a long process but at least there was recognizable progress. Good luck with things.

[musculus]

this IS a crippling disorder!

[Goofproof]

this IS a crippling disorder!

Anything is if you let it be. Jim

[chunkyfrog]

Which stupid disorder?
I would rather have OSA than "stupid".
That one cannot be fixed.

[Goofproof]

Which stupid disorder?
I would rather have OSA than "stupid".
That one cannot be fixed.

Stupid like Ugly is a lot harder to fix than XPAP, all XPAP needs is Air. Jim

[DaisySmith]

Hi all,

So I've been diagnosed with sleep apnea since I was 21, but I was tired even in high school.

As of late, I've accepted that I need to use my CPAP machine...but even after consistently using it, I still feel tired. I try to keep the mask on my face, and I'm also now going to try chin straps to keep my mouth closed.

But...has anyone else felt SO crippled, with or without the CPAP? I mean, I've been so tired I haven't even been able to hold down a job. Is this normal? Is there anything I can do?

With this level of lack of functioning, sleep apnea has felt like a totally dehabilitating disorder. So why does it almost seem that many take it lightly? Or that many seem to function okay, even without the CPAP?

Yes I do. I hate it. I hate using the machine. I hate that the air blasts my husband in the face. i hate the feeling of it. I hate that I have to lug it with me when I travel. I dont know if these things really justify using it when I'm still so tired.

[Goofproof]

Hi all,

So I've been diagnosed with sleep apnea since I was 21, but I was tired even in high school.

As of late, I've accepted that I need to use my CPAP machine...but even after consistently using it, I still feel tired. I try to keep the mask on my face, and I'm also now going to try chin straps to keep my mouth closed.

But...has anyone else felt SO crippled, with or without the CPAP? I mean, I've been so tired I haven't even been able to hold down a job. Is this normal? Is there anything I can do?

With this level of lack of functioning, sleep apnea has felt like a totally dehabilitating disorder. So why does it almost seem that many take it lightly? Or that many seem to function okay, even without the CPAP?

Yes I do. I hate it. I hate using the machine. I hate that the air blasts my husband in the face. i hate the feeling of it. I hate that I have to lug it with me when I travel. I dont know if these things really justify using it when I'm still so tired.

My that's a awful lot of hate for one girl to keep bottled up. Jim

Can't we just get along?

[DaisySmith]

Hi all,

So I've been diagnosed with sleep apnea since I was 21, but I was tired even in high school.

As of late, I've accepted that I need to use my CPAP machine...but even after consistently using it, I still feel tired. I try to keep the mask on my face, and I'm also now going to try chin straps to keep my mouth closed.

But...has anyone else felt SO crippled, with or without the CPAP? I mean, I've been so tired I haven't even been able to hold down a job. Is this normal? Is there anything I can do?

With this level of lack of functioning, sleep apnea has felt like a totally dehabilitating disorder. So why does it almost seem that many take it lightly? Or that many seem to function okay, even without the CPAP?

Yes I do. I hate it. I hate using the machine. I hate that the air blasts my husband in the face. i hate the feeling of it. I hate that I have to lug it with me when I travel. I dont know if these things really justify using it when I'm still so tired.

My that's a awful lot of hate for one girl to keep bottled up. Jim

Can't we just get along?

tell that to the hunk of junk sitting on my nightstand