Terrible Fatigue

[benzmum]

I'm so tired I feel sick! I've been using cpap for over a year, recently got a new mask because apparently I was leaking, and I still wake up feeling like death. It's now mid afternoon and all I can think about is sleep. I got the results of my sleep study this week, and apparently I have mild apnea such that I can live without cpap if it doesn't help my sleep. But I think I get a TEENY bit of improvement when I wear it. It's just that I still wake every two hours and am desperate for a good-night's sleep.

I don't know what to do and I feel I really need help. I'll go see another respirologist next week if I can, but in the meantime any advice would be welcomed. I feel so wiped out that I can barely move. I've taken my bike out a few times this week, and I can't ride for long without coming back feeling worse than I did before I left - and that's a relatively easy ride.

Please, can someone help? I keep reading what I can here and on the internet, but I've got so I can barely absorb what I'm reading.

[cinco777]

Forum members might be able to help if they know what equipment you are using. Please update your profile with your equipment (and include your CPAP software if you have some).

Additionally, it would be helpful to know what other medical conditions you are dealing with plus which medications you are taking for them. There are many members of this forum who have intimate knowledge of certain medical conditions and how they relate to Sleep Apnea.

I was fatigued in the morning prior to CPAP but my CPAP therapy has remedied that zombie-like feeling.

[lazyace]

Forum members might be able to help if they know what equipment you are using. Please update your profile with your equipment (and include your CPAP software if you have some).

Additionally, it would be helpful to know what other medical conditions you are dealing with plus which medications you are taking for them. There are many members of this forum who have intimate knowledge of certain medical conditions and how they relate to Sleep Apnea.

I was fatigued in the morning prior to CPAP but my CPAP therapy has remedied that zombie-like feeling.

Ditto to everything Cinco said. I am curious about how you have been on CPAP for a year, but just received your sleep study report this week? If it were me, I would make certain that I am using the right machine/mask/settings. Once that is solved, and if I was still feeling like junk, I would see an internal medicine doc and have your thyroid and red and white blood counts looked at. I have been/continue to be exactly where you are at. I know how difficult it can be, and the toll it takes on your spirit. Hang in there, there is a cause, and this forum is full of folks that know how feel.

[Julie]

Your problem could be as simple as you're unknowingly having your mouth open while sleeping, and losing the Cpap air that way as many of us do. The answer would be simply to get a suitable "full face" mask instead of a nasal one, but not knowing if that is your problem or something else entirely,it is very important that you post your equipment so we can try to help.

[jweeks]

Hi,

There are 2 possibilities here...

1) The CPAP treatment is working, and you have some other problem, possibly a sleep problem.

2) The CPAP treatment is not working, and your breathing is still an issue.

In either case, you are going to need an MD diagnose this and come up with a suitable treatment. Keep working with the doctors since this can be a life-threatening condition. Good luck, and post back with updates on how you are doing and what they find.

-john-

[Wulfman]

Hi,

There are 2 possibilities here...

1) The CPAP treatment is working, and you have some other problem, possibly a sleep problem.

2) The CPAP treatment is not working, and your breathing is still an issue.

In either case, you are going to need an MD diagnose this and come up with a suitable treatment. Keep working with the doctors since this can be a life-threatening condition. Good luck, and post back with updates on how you are doing and what they find.

-john-

I disagree with this statement if it's simply a matter of the person leaking air out their mouth. Too many doctors are clueless about this therapy. Many will simply order an increase in pressure without knowing what the problem is. If the problem IS mouth-leaking and the pressure is increased, there is simply more mouth-leaking and no improvement in the person's therapy. Another sleep study probably won't find the problem either if the person doesn't wear their own mask (using one provided by the sleep lab).
Best (and least expensive) solution is a data-capable machine and the software to interpret the data.


Den

[Wulfman]

I'm so tired I feel sick! I've been using cpap for over a year, recently got a new mask because apparently I was leaking, and I still wake up feeling like death. It's now mid afternoon and all I can think about is sleep. I got the results of my sleep study this week, and apparently I have mild apnea such that I can live without cpap if it doesn't help my sleep. But I think I get a TEENY bit of improvement when I wear it. It's just that I still wake every two hours and am desperate for a good-night's sleep.

I don't know what to do and I feel I really need help. I'll go see another respirologist next week if I can, but in the meantime any advice would be welcomed. I feel so wiped out that I can barely move. I've taken my bike out a few times this week, and I can't ride for long without coming back feeling worse than I did before I left - and that's a relatively easy ride.

Please, can someone help? I keep reading what I can here and on the internet, but I've got so I can barely absorb what I'm reading.

We can't help you until we know more about what equipment you have and any other health issues you may have.
I have no idea why you've not addressed this issue before now.


Den

[Rustyolddude]

Make a list of all meds you are on including OTC meds, & any suppliments. How much caffeine/alcohol do you consume? How about diet drinks? Any unnatural substances, sweetners etc. THere might be an answer in there somewhere.

[benzmum]

Wulfman, I am addressing it as it has occurred - i.e., it's just this past few days that I've felt so debilitated.

I appreciate those of you who replied - I felt very lonely went I sent that message and it helps to be acknowledged. I slept 10 hours fitfully last night, and this morning I still feel dozey but not quite so bad.

I will update my profile when I can gather my wits to do so. In the meantime, I'm using a Resmed Elite II with h4i humidifier and ResScan data card, and my mask is the Mirage Liberty. Last night the Elite's data screen showed Leak .26 L/s, AHI 6.0, AI 0.8, HI 5.2 (I wore my mask from 9:00 to 3 am, waking up every 2 hours). I was using a Mirage Swift mask until a few weeks ago when my respirologist said I needed to enclose my mouth - I could actually feel myself exhaling the cpap air through my mouth when I was dozing off. I have fibromyalgia, but I've always considered it an extremely mild case. It just slows down my ability to recover from bumps, etc., and my muscles are stiffer than they should be. Yesterday, though, I was wondering if I'd suddenly slipped into a severe case of fibromyalgia. I don't take any medications on a regular basis anymore, but have an arsenal of meds that I use for bouts of IBS and migraines. I also take clonazepam as I feel I need it, usually averaging about 1 mg/day.

Regarding the sleep study: I'm in Canada and there's a waiting list to get into a study. I was diagnosed by a Sleep Specialist after he analyzed oximeter readings on me. I could have had the sleep study in January but it got delayed because I was on medications that would have thrown the results off so I had to wean myself off those. I actually went in for the study in June, but because of my foggy brain I missed two separate appointments that were to get the results. I just managed to get in last week. That's where I heard that cpap was optional. I'll see my GP this week and get a copy of the results, because there wasn't time to ask all the questions that came to my mind. I've had recent blood work done to check my thyroid, red and white blood counts, plus my hemoglobin levels. I'm always normal, except for my sodium which is slightly low. The internist said it was probably my version of "normal." Hope all that's useful. Thanks!

[benzmum]

rustyolddude, I take a Ca/Mg/Zn supplement three times a day, plus 1000 IU vit D, plus 2 tsp polyethylene glycol. I use Cimetidine, Domperidone, Buscopan, Maxalt RPD, Tylenol #3, clonazepam, and Dulcolax only as needed, plus a few times a year I have to have an injection of Demerol for a devastating migraine.

I got the lecture about caffeine at my first sleep MD appointment: I have one cup of coffee at about 8 am, one-two cups of tea no later than 4 pm, and eat about an ounce of chocolate in the afternoon. I don't drink pop/soda. And that's about all my poor brain can dig up for the moment.

Thanks for your interest, everyone: it means a lot.

[SaltLakeJan]

Hi benzmum,
I'm sorry you are have such severe fatigue. I understand the fatigue, that is so overwhelming that you cannot think clearly. I have had fibro off and on for years. Mostly mild now. The first Doctor who was trying to treat me, thought fibro was as troublesome as a common cold. Some light cases can be. He had been an Army Doc, I asked if he had treated Heptatitis. He replied that most Hepatitis patients have major fatigue.. I told him my husband and I had Hepatitis, with resulting fatigue for years. And that my present fatigue was equal to that of Hepatitis. My ans startled him, he said he would regard FMS in a different way in the future.
I was President of a Fibromyalgia Educational Group for 13 years. It has been about 5 years since I resigned - ran out of ideas; there are undoubtedly new drugs to help with this crappy condition. In the States Lyrica has been approved for treatment of FMS. It is possible with the emotional and physicial strain you are experiencing from sleep depravation, that it has thrown you back into fibro - in a more serious condition than you were before. Also I have known many people with FMS, who have morphed into Chronic Fatigue Syndrome.

I only mention the supposition of FMS because of your history with it. You also mentioned that you have IBS. IBS is one of many conditions that can co-exist with FM. . I wish you the best in finding find the source of your fatigue. Keep the forum posted on how you are doing. There are many caring people here to help you. Jan

[benzmum]

Thanks for that, Jan. I guess I'd better go back to my fibro specialist - haven't seen him in a couple of years. I actually went through an apartment renovation (NOT my choice) about a month ago and it darn near killed me. You've reminded me of how trauma can bring on fibromyalgia, so I should probably look at the latest findings in that arena.

I should add, guys, that I had cancer surgery in March of '08 - I was hesitant to mention it in case everyone said "well, there you GO!" and tuned me out. I rather hoped that after the cancer cells were gone I'd turn into a new woman (surgery indicated "all clear"). But then I got shingles and then I got diagnosed with apnea - SUCH a year! But with the apnea diagnosis, I figured there was even MORE hope for transformation, since I'd had insomnia off and on for decades. I read a discussion here (or on apneasupport.org) where everyone was saying they weren't so bad anymore, after years with their cpap, but they STILL didn't feel refreshed in the morning. That was awfully discouraging. I wonder if there's been a poll taken here that indicates how many people do feel refreshed in the morning since they adapted to life with cpap? Anyone know the stats?

I wish my brain worked better these days, because there's an awful lot of research I should be doing.

[Julie]

Well, I have days where it takes quite a while to feel 'normal' in the a.m., but after something to eat, and a bit of busyness, I can feel fine the rest of the day, or possibly add in a short nap in the afternoon. And I have days where I feel great in the a.m., but later on want a nap, and feel worse after it, then magically feel better in the evening. So I'm not sure there are consistent answers for me, but others seem to do better (or worse), and I also wonder how much difference age and fitness make. A 40 year old man who's not INactive is probably going to feel at least decent more of the time than someone of 70, but how to measure either the difference age or activity level make, never mind diet, medications, equipment, etc. etc. is probably going to be close to impossible.

[SaltLakeJan]

Hey benzmum,
With all you have gone through in the past and currently, I would urge you to be really good to yourself for the time being. Concentrate on getting simple nutritious food. Try a warm bath, about an hour before you go to bed. If you can't sleep, lie down as much as you can. I know you want to read and learn, but even reading requires brain energy.

When you got Shingles after Cancer, it was just another stress piled on top of another. I had a 8 month bout with Osteolymetis in my heel, and Peudomonas infection.& 3 surgeries. It took 7 infusions of an antiobiotic daily for 8 months to keep me alive. When I could finally stop the antiobiotic, I started with FMS. I am O.K. now, but I had to learn to do as little as possible for a period of time, then I got out my bike, and rode flat terrain. Like you, I figured, biking was the easiest exercise I could do, and get a leg and lung workout.

It is so frustrating when you are exhausted and there is so much to do. You feel guilty for not doing more. Believe me, doing more, will keep you exhausted. Do all you can to take care of yourself, try to ignore all the things you think you "have to do." Get a positive thought that fits you, like: "by taking care of my self, I am getting better every day"

I have an idea of what you are going though. If you ever need a little pep-talk, PM me at any time. Jan

[benzmum]

Thanks for the "pep" talk, Jan. I guess it does look like my body's been through the mill. It was just the coincidence of switching from nasal pillows to FFF (which should have helped me sleep BETTER) that disturbed me - I mean, why do I suddenly crash NOW when there's another ray of hope on my horizon? The body is a mystery, no question about it. If I get any insights from the various professionals I'm going to see, I'll report back.... Assuming I remember! That's been a terrible thing indeed, i.e., having my mind get foggy and unable to hang onto info. Sometimes it feels like it's all downhill from here. But maybe I'll get a good night's sleep one of these days which will give me a better perspective on things (please, God!).