If fatigue doesn't improve I give up !!

Spirit, I'm sorry that you've had a difficult time for so long. I have seen quite a few people on this forum report that they continued to have fatigue for quite some time after starting xPAP therapy, so I don't think you're alone. We all recover at our own rate, and sometimes there are other causes as well as sleep apnea. It seems like you started out more debilitated than some, so your recovery process may take more time.

I think that ozij had a good point regarding the hypopneas. That may be something for you to work on, as that may be a little high at 6.8. This may not be relevant to your situation, but I have recently been trying the Quattro full face mask, after using only nasal and nasal pillows masks. For some reason, my apneas increased tremendously when on my back with the Quattro, yet I don't have that problem with the other masks (it may be because I have to wear the Quattro straps tighter, which is pulling my jaw back and causing more obstructions). Right now, I'm limiting myself to side-sleeping by using a homemade tennis ball belt that keeps me from turning onto my back, and so far it's working! I only had 1 apnea last night with side-only sleeping, compared to 26 the night before, when I spent some time on my back. I mention this because you may want to try the same, just to see if that may bring your hypopneas down. Many people have more events on their backs. Perhaps some of your hypopneas are obstructive and are causing less than optimal sleep quality. Here's a picture/explanation of my homemade tennis ball belt, in case you want to try it: viewtopic/t49037/viewtopic.php?f=1&t=46 ... 0&#p414470.

It's possible that a slight pressure adjustment may help too. Maybe you could post some information about your pressure settings and see if anyone has suggestions regarding that. It may also be helpful to post your sleep study results.

You mentioned that your thyroid tests are normal. I know that you have had an enlarged thyroid. Which thyroid tests have they done? Have you had Reverse T3 and thyroid antibody tests? If not, you may want to talk to your doctor about that. People can have normal standard thyroid test results (TSH, T3, T4), but still have problems with some aspect of thyroid function. Is your body temperature normal, or is it low? Also, I hope you will keep discussing your fatigue with your doctor. Don't give up.

Depression may be part of your problem too. I know about your feelings regarding medications, but if depression is determined to be a problem for you, perhaps there is some way to treat it that you would be comfortable with. It may not even need treatment with medication. Talk therapy could be of great benefit. I know that you've been having financial difficulties and various health problems for several years. You've been through a lot. That kind of stress can take a tremendous toll on us. Reach out for help and support wherever you can find it.

Kteague (Kathy) also had some excellent suggestions. You mentioned that you are moving a lot in your sleep, knocking over your machine with your arm movements. As Kathy said, sometimes treating the sleep apnea will bring other issues (such as limb movements) to the forefront, which also disrupt sleep quality tremendously. You may not even be aware this is happening.

I know that it's very frustrating that you're not seeing more improvement in your energy, but I hope you do realize that the xPAP therapy is helping to prevent other health consequences caused by sleep apnea. And you have made some progress, as you said. You were bedridden before, and now you're able to get around a bit. You said that you feel better mentally. So hang onto that. Things are better than they were, and hopefully things will improve even more!

~ DreamOn

P.S. How are your new eyeglasses working?

Spirit, I'm so sorry to hear you're still having problems. Vent away, we all need to sometimes - but don't stop the therapy.

Don't forget, there are other reasons for using CPAP therapy, quite apart from the fatigue, and how else you may feel during the day. Regardless of these, there are health issues to consider. Strokes, heart attacks, and so much more. Whether or not you FEEL better, you are doing your body a favour by continuing. Your fatigue, or correcting this, is not be the only reason for therapy. But a major issue nevertheless, when faced on an ongoing basis. And I agree, it can take more than 5 months.

Keep writing, keep ranting - it all leads to assistance. But heed the assistance, learn, and you' will start to feel better.

In your post, there is clear evidence of improvement, although you may not recognise it as such if you are so despondent.

Take heart, we are all here for you.

It's also possible this is not just sleep related. You might have some other underlying condition (chronic fatigue syndrome as an example) that the xPAP therapy will not solve. There's an old diagnostic saying: "If you hear hooves, think of horses not zebras". But sometimes zebras do show up. Just check first to see if it's the lowly horse.

So, you've checked for horses. xPAP has made some difference, but not all. What about other possible issues?

I think you are a male. Have you had a full blood test? My doctors orders one every year, not the regular type, this is more comprehensive and it is more costly. He discover that I had low testosterone. After getting treated for low testosterone my energy increased but my sleep apnea is a little worse.

Ask for a full blood test.

Hi DreamOn,
Thanks for reply. Sorry, not a back sleeper, never slept on my back.

You mentioned that your thyroid tests are normal. I know that you have had an enlarged thyroid. Which thyroid tests have they done? Have you had Reverse T3 and thyroid antibody tests? If not, you may want to talk to your doctor about that.

Thanks, have already had all thyroid tests performed including antibodies, a week ago, all return normal.

People can have normal standard thyroid test results (TSH, T3, T4), but still have problems with some aspect of thyroid function. Is your body temperature normal, or is it low? Also, I hope you will keep discussing your fatigue with your doctor. Don't give up.

My hands/feet are frozen all the time, but doctor assured not thyroid. He's at a lost, he has tested everything possible, I've had adrenal fatigue test, vitamin test, diabetes, cbc, etc..... Nothing shows abnormal.

Depression may be part of your problem too.

No, not depressed. I was psychologically evaluated last year, tests reports state, normal mental health.

You mentioned that you are moving a lot in your sleep, knocking over your machine with your arm movements.

No, not moving alot in my sleep, incident happened saturday night. First time during treatment.

Thanks so kindly for support.

It's also possible this is not just sleep related.

Hi John,
Thanks for reply. What you share is true, but up to this point, nothing has been found abnormal in my health other then apnea. I've had every test an indvidual could have for fatigue, including all cardio test. No abnormalities.

Reason I am so frustrated with cpap treatment and the lack of solutions for 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 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.
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.
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.

Don't you see the contradictions in what you are posting?

You were bed ridden. So was I at 13 for 6 months with a kidney infections and I can tell you it took a lot more the 5 months to get my muscle tone and energy back. It is called "Use it or lose it" So yeah when you exercise you will feel wiped. Totally wiped but you got to hang in there and keep working with it.
Cpap therapy has given you back at least several hours of time and you are going to quit it to spite your sleep doctor?

To all supporting members. My mistake, concerning bedridden. I should have stated feeling like a zombie. I had taken klonopin 3 years ago, damaging my CNS. I was bedridden from the damages of the medication. During that phase, I developed apnea. I have improved and no longer laying in bed 24/7, but don't know if CNS is healing or if cpap therapy has contributed to recovery, or a combination of both.

I have done research and discovered apnea can cause extreme fatigue, especially those with narcolepsy. Discussed with my sleep doc, and he stated that apnea can make me feel the way I do. We discussed CNS damage, etc.... This is the reason, I continue to harp on apnea. All medical tests return normal. When beginning my cpap treatment, I had both mental and physical symptoms, but now I only have physical. So cpap has helped tremendously bringing my brain back to life, I am wide awake/alert but physically tired.

I am a member of a few medical forums, including medication, and no one ever shared they experienced the fatigue I have, nor has anyone at cpaptalk.

So now, I don't understand why cpap is not helping my fatigue improve. cpap has done wonders in other area's, mainly mental. But physically I still feel like a 2000 pound weight, sitting on a bed.

The major complaint for apnea sufferers is fatigue/tired. So why do I alway's feel like I'm the only that has it. It's like, fatigue symptom does not exist at the forums.

Out of all the replies I have recieved, no one shared they experienced fatigue, and could relate to what I'm going through at 6 months of treatment.
Thanks

And in addition. I was a member at the sleep apnea forum, and no could relate to fatigue. So no longer visit. cpaptalk has been an excellent forum, in assisting me with my cpap, but as for symptoms of apnea. I don't know where to go for support. I feel as if I'm swimming against a title wave, with no one tossing me a life jacket.

I & many others, do not have the finances to purchase software, card reader, monthly mask changes etc..... So does that mean, what we are experiencing cannot be resolved? cause we don't have access to data, etc......

As you have witnessed, I am at my wits end battling fatigue. Not everyone has the assistance of spouses, loved one, family members, friends, doctors. Reason such person as myself, seek assistance/support from forums.

Even the Government has turned thier back on me. What am I suppose to do, just lay here and die, from fatigue. So, yes I'm fighting, I'm fighting everyday, reason I am so wore out and tired, seeking assistance. It's like an endless cycle of rejection from the system.

I wish cpap treatment worked for me, like it does everyeone else, so one day I can assist others, but right now, I can't even get my own treatment to work for me.

Thanks for reading.

Spirit wrote:So why do I alway's feel like I'm the only that has it. It's like, fatigue symptom does not exist at the forums.

Oh, for me it still exists. I will function well all day, get past that 1-3pm exhaustion blockage I had prior to CPAP, no worries. But - expecially if I am not kept occupied or active - I will crash like a ton of bricks sometimes. The therapy is working, the numbers are good.....I suspect it is because I am still overweight, out of condition, not exercising....whatever. (In my case) I don't believe it is the therapy. And sometimes medical tests cannot show this. They say energy breeds energy, and it is true - the more you exercise, the better you will feel. Eventually.

That's the next step for me. And that's the key - one step at a time.

I'm sorry you are having such difficulties with your fatigue, and lack of resolution there. I wish I could help with some constructive advice. But perhaps if you've exhausted all medical routes, then exercise and diet may be the next steps?

Oh, for me it still exists.

Hi Gmma,
Sorry to read, your still having difficult with fatigue, hope it clears up for you soon. I have to force myself everyday, just to try and live a normal life. Nothing feels natural to me. I wake up, feeling blah and hour later feel decent, get things done, then 2-4 hours later, all I feel like doing is going back to bed, and just fight, fight, fight from laying down. Just have to lay down all the time, cause I'm physically exhausted.

But perhaps if you've exhausted all medical routes, then exercise and diet may be the next steps?

Thanks for suggestion, but I've tried, believe me, I tried. I am not over weight, eat a healthy diet and try to exercise when I can. Reason my pcp is so baffled. When he sees me, my labs indicate I'm perfeclty healthy.

I've alway's kept myself healthy, I was an exercise fanatic, used to walk/run on my treadmill daily, worked as an owner/tech at my auto shop, I was alway's a very physically active person. Cardiologist expressed I have a heart of an athelete when I was 45, that was 2 years ago. Now, when I try to walk half a mile on my treadmill, the next day I'm wiped out. A half mile, exhaust my body as if I walked 100 miles. I've tried everything, vitamins, stretching, meditation, acupuncture and the list goes on.

Just don't understand how I can go from an atheletic lifestyle to a zombie in a matter of 3 years. 4 years ago, I did not have sleep apnea, after sleep study. Last year, I was diagnosed severe.

Thanks for your input/support. I should be on mystery diagnosis.

Hi, you said one thing that bothers me, and that is that your hands and feet are frozen all the time. That really suggests a lack of circulation, e.g. cardiac problems, and I really wonder if your MD has covered all the bases with regard to checking you out, if every reasonable test has been done beyond an office exam. It's important not to brush off something because it seems like a small symptom when it could be an important one, though of course I would hope it isn't anything serious.

Julie wrote:Hi, you said one thing that bothers me, and that is that your hands and feet are frozen all the time. That really suggests a lack of circulation, e.g. cardiac problems, and I really wonder if your MD has covered all the bases with regard to checking you out.

Hi Julie,
Thanks for reply. I had a circulation test, middle of last year, return normal. I've had heart cath, with no blockage, heart stress, ultrasound, echo all return normal. Seems my doctor, cardio, specialist test everything possible.

They have tested everything, I've suggested to them from the internet forums.

Last month cpap members expressed I should have thyroid antibodies tested, and that returned normal too, 2 weeks ago. The only abnormality found was apnea and enlarged thyroid with normal labs. My thyroid is tested every month, for changes. Labs are perfectly normal up to date.

After deep thought, only one other possibility, may be causing my fatigue. Central nervous system damage. But my pcp will not schedule an appt with Neurology. He said, neurology can only confirm damage, but cannot repair, and my eye doc expressed the same.

Oh dear, Spirit. You need to send your symptoms into the writers of "House" and hope they use them in an upcoming episode!!

Typical of the disorders they deal with - no obvious answers, tests all negative (until the final one). No wonder you are so frustrated.

Don't get me wrong, I don't walk around all day exhausted, and in no ways am I (or would I want to be) comparing my situation to yours. I hold down a good job, and perform it well - it is just that sometimes fatigue does rear its ugly head. No biggie, and certainly not in any way similar to your situation.

Spirit wrote:After deep thought, only one other possibility, may be causing my fatigue. Central nervous system damage. But my pcp will not schedule an appt with Neurology. He said, neurology can only confirm damage, but cannot repair, and my eye doc expressed the same.

Spirit, especially because of the past Klonopin damage, your eye problems, etc., I would insist on referral to a neurologist! Even if there's nothing that can be done to repair the damage, you may at least learn what is actually going on. And from there you could learn how to deal with it better. Besides, there are neurological problems that can be helped.

Have you been thoroughly evaluated for disorders such as multiple sclerosis? I'm not saying you have it (!), but it's one of many conditions that needs to be ruled out. If at all possible, you need to see a specialist. For anyone who is interested in MS symptoms (many of which are found with other disorders), here's a good website: http://www.mult-sclerosis.org/mssymptoms.html.

I wish you all the best, and I hope things get better for you.

~ DreamOn