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

DaisySmith wrote: ↑

Mon Feb 26, 2018 7:43 pm

Goofproof wrote: ↑

Mon Feb 26, 2018 7:22 pm

DaisySmith wrote: ↑

Mon Feb 26, 2018 7:09 pm

Kabuto wrote: ↑

Sun Feb 25, 2018 4:15 pm

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

That's called Life Support, along with my three remotes, and Ice Water. Jim

DaisySmith wrote: ↑

Mon Feb 26, 2018 7:09 pm

I dont know if these things really justify using it when I'm still so tired.

Daisy, just wondering if every avenue has been explored as to why you are still so tired, and whether it is treatment related or an issue in addition to OSA. Maybe you've already talked it through on here, but if not, feel free to start a thread if you feel there's room for discussion.

DaisySmith wrote: ↑

Mon Feb 26, 2018 7:09 pm

. . . hate . . . hate . . . hate . . . hate . . . hate . . . hate . . .

All that hate could be wearing you out . . .
It takes power away from you.
Substitute words like frustrated, resentful, and annoyed.
The machine cannot hate--it sits, waiting to serve.
It only does what it is programmed to do; which is to HELP YOU.
Think of it as a homely angel, who only seeks to save your life.
Believe that you are worthy.

Kabuto wrote: ↑

Sun Feb 25, 2018 4:15 pm

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?

I was diagnosed around age 40 when it DID cripple me...I literally had a breakdown. I'd lived with it since perhaps age 10 (maybe earlier), which is around the time I started always feeling tired as I remember. I had a military career and then a corporate career after attaining several degrees (including a first class honours) with it weighing me down as I went. I lugged myself through those 30-odd years striving to succeed at things (which I did) until one day I just collapsed. There's a lot of related illnesses that come with sleep deprivation over a long period of time...and only the ignorant think that you need to be missing a leg to be crippled. Long term sleep deprivation is more crippling than missing a leg...because you are missing the ability for your brain to function properly. Have sought answers for years now on how to overcome it and CPAP helps to a degree for me, but not the solution some people get (lucky for them). Just like OSA didn't use to be known about 25 years ago generally, hopefully, they'll figure out the rest of it one day. How long ago was 21 btw Kabuto? This can be a debilitating disorder for some, not so much for others...it can also depend on how severe it is too - which is probably why some find relief from CPAP while others don't/

Untreated this can be a debilitating disease. When one doesn't have the energy to sit up, let alone function in a very demanding world, yes that is major.

Effective treatment however is capable of reducing this to a sustainable level, not unlike wearing glasses to correct vision.

From what I have learned and observed there are a series of broad steps involved in getting to a state of effective treatment.

Diagnosis is step 1,
step 2 getting the right machine,
step 3 dialing in treatment to maximize effectiveness
step 4 getting 7+ hours sleep with the machine every night
step 5 bringing body back to a good level of fitness

Declaring treatment a failure or not the hoped for solution is more likely the result of not working through all the steps. Steps 3-5 are, of course, the most difficult in that they require flexibility, diligence and belief. Not easy if you are feeling exhausted.

When I was much much younger, a wise person told me that anything worth having required effort.




This forum here focuses on steps 1 - 4, but the final step is equally crucial to solidify the benefits.

When I first found out that I had sleep apnea. I was very exhausted. It turned out at first that I was also low on B-12. Do a search for B-12 you will see that it is also a cause for exhaustion.. If that is the problem a shot from a Doctor will help. When your levels get better an over the counter bottle of B-12 will work.

Kabuto wrote: ↑

Sun Feb 25, 2018 4:15 pm

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?

Hello,

I can totally relate to what you are saying. For the past several years I have been so tired that I could not function properly in my job. I cannot concentrate, have troubles to read etc.
Last September I was diagnosed with OSA(AHI 45) and I'm just starting CPAP therapy. There have been huge delays getting appointments for the titration study, insurence company approving my treatment etc.

I'm on CPAP for two weeks now and ufortunately don't feel that much better, eventhough my AHI are good (<5). Some improvement for me is that I have less headaches in the morning, but I'm still very tired. RIght now I want to continue my CPAP therapy and see where I'll be in 3 month time.

Regards,
Jiri

I went undiagnosed and untreated for probably 20+ years. When I was diagnosed, I had an ahi of 79 and did not reach REM. It probably would have been worse had I done a full not diagnosis study. But it was pretty obvious that I needed cpap.

Despite being severe and for a long time. I was trudging along, unaware of what I had gotten used to. I felt much better after being treated, but I never felt crippled before or during treatment. I only decided to get diagnosed and treated because I saw a news report that sleep apnea leads to high blood pressure, which causes heart attacks and strokes. I had the high blood pressure already, and I was pretty sure I had sleep apnea. Had I known that many of my symptoms were sleep apnea, and not just getting older, I would have asked for treatment a lot sooner.

That said, this past November, I got hit by the worst case of fatigue ever. I was exhausted all day at work, and falling asleep with dinner in the microwave once home. I was sleeping 12 hours or more and still exhausted. On my days off, I would sleep all day and maybe eat once and watch a little tv. But I was extremely tired. I went to the doctor and my strange variety of symptoms pointed to iron deficiency. I started treatment, and it started to improve. Last month, I was told I could cut back, but I was getting tired again and didn't cut back as much as suggested. I was still taking some, yet back to sleeping all day. So, I am back to 3 times a day to stay functional. I have no idea when I will back to normal, but I can tell you that iron deficiency has hot me a LOT harder than sleep apnea did.

You may have more than one issue that needs to be treated.

chunkyfrog wrote: ↑

Tue Feb 27, 2018 8:53 am

DaisySmith wrote: ↑

Mon Feb 26, 2018 7:09 pm

. . . hate . . . hate . . . hate . . . hate . . . hate . . . hate . . .

All that hate could be wearing you out . . .
It takes power away from you.
Substitute words like frustrated, resentful, and annoyed.
The machine cannot hate--it sits, waiting to serve.
It only does what it is programmed to do; which is to HELP YOU.
Think of it as a homely angel, who only seeks to save your life.
Believe that you are worthy.

DaisySmith wrote: ↑

Mon Feb 26, 2018 7:09 pm

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.

Me, too. I know it helps me sleep, and I don't want to return to the horrible exhaustion and brain fog that I felt before I was first diagnosed with mild sleep apnea a year or so ago, but I am coming to really resent the machine. Sometimes I use it only because if I don't, I'll snore, and that'll annoy my husband. When I first got my machine, I was surprised at how comfortable and quiet it was. But I'm learning to hate having something under my nose all night, and hearing the roar of air if I move the cushion to scratch my nose, and having to deal with it when I get up to go to the bathroom in the middle of the night. I would like to figure out a way to feel more accepting of it...

I can relate to the OP. I agree crippled literally means losing the use of limbs but lately, it is a word I have used to describe how I feel.

Definitely worth investigating other possible causes of fatigue. Having got worse lately I decided on a "back to basics" review of all causes.

In my case that means, apart from sub-optimal therapy (recently revealed):

Periodic Limb Movement - you can get a sleep study done to check this and it can be treated with meds, although don't touch benzodiazepines is my firm advice

Bladder issues causing frequent bathroom visits at night (in m my case recently unearthed enlarged prositate)

Benzo withdrawal (see above)

Stress

Antidepressants?

Low thyroid - (but medicated OK)

General sleep hygiene

Alcohol/caffeine etc

Forgive me if some of this is obvious but just giving my lost in case it helps someone.

I felt like I couldn't get out of the "tired" funk for a while. Modafinil is prescrible for compliant CPAP users. It saved my life. I'm off it now, but it really changed my day night sleep cycle and kept me awake during the day. IE could be as simple as a sleep cycle disfunction from years of untreated apnea.

Another thing to consider is that exercise is now possible. I know I had an aversion to exercise grown from having apnea (every time I got into exercise while untreated I eventually got sick), but you might find that now that you are treated that you take quite well to exercise. It may even be easy.

Also magnesium is a common deficiency for apneiacs... because of the suffcation and cell damage... your body uses more than most people get in a diet... B vitamins too as someone else mentioned. Also supplementing with Omega 3's really helped me.

UNTREATED sleep apnea is crippling. If your apnea is being optimally treated (you may need a sleep study with CPAP to make sure) then there is some other explanation for the fatigue. Bark up every tree until you find it. Just because you have one condition with fatigue as the primary symptom doesn't mean you don't have one or more other conditions that cause fatigue.

I'm a fan of functional and integrative MD/DO's. These are folks with a medical license who add integrative or functional medicine to their skills. They look for underlying causes instead of just treating symptoms, and with their medical licenses they can run the necessary tests and make appropriate diagnoses. They MAY be covered by insurance, although a functional or integrative doctor will tend to spend more time with you than a busy practice primary care physician can afford to, so they don't always accept insurance. Worth it, IMHO.

As for you feeling it more because you've "had it all your life", I'd wager that a good many of us here have had sleep apnea all or most of our lives. It wasn't really a "thing" until the 1980's when the first home treatment machines were available, and the insurance world didn't see the value of testing or treating for several decades after that. I have a small, narrow airway from a genetic disorder--I'm pretty certain I've had sleep apnea all along. I hated my CPAP with a passion at first, but now I love it because I wake up feeling calm, peaceful and rested instead of ready for fight or flight as I did before.

Sleep2Dream wrote: ↑

Mon Mar 19, 2018 7:26 am

DaisySmith wrote: ↑

Mon Feb 26, 2018 7:09 pm

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.

Me, too. I know it helps me sleep, and I don't want to return to the horrible exhaustion and brain fog that I felt before I was first diagnosed with mild sleep apnea a year or so ago, but I am coming to really resent the machine. Sometimes I use it only because if I don't, I'll snore, and that'll annoy my husband. When I first got my machine, I was surprised at how comfortable and quiet it was. But I'm learning to hate having something under my nose all night, and hearing the roar of air if I move the cushion to scratch my nose, and having to deal with it when I get up to go to the bathroom in the middle of the night. I would like to figure out a way to feel more accepting of it...

YES! Just having to pull it away to itch my nose makes this horrible air sound that makes me feel like I'm disturbing my husband. I hate the stream of air that comes out the front and hits him in the face so we have to sleep with a pillow between us. That makes me particularly resentful

No, not really... It's only restrictive for me in a very minor way in the sense that I have to be sleeping somewhere near an electrical outlet (and even then if I had a battery I wouldn't have that restriction). It hasn't affected when or how I sleep at all but I got lucky by finding a very comfortable mask and pressure setting from the get-go, I admit.