90 Days & Still Exhausted

[websiteguy]

Hi All-
I have now been on the Resmed S9 Elite for 90 days and feel almost no relief. I am still exhausted all the time. I had an AHI of 24. My pressure is currently set at 9. I am not really sure what kind of help to be looking for, but I have installed Sleepyhead and here are my results.

[Pugsy]

How many hours of sleep would you say you average each night? From the usage graph looks around 8 maybe???
Are those hours fragmented with wake ups? Toss and turn a lot? Difficulty falling asleep or staying asleep or if you wake up in the middle of the night any trouble getting back to sleep?
Do you take any meds..even OTC meds? If so, what, dose and when do you take them?

[websiteguy]

How many hours of sleep would you say you average each night? From the usage graph looks around 8 maybe???
Are those hours fragmented with wake ups? Toss and turn a lot? Difficulty falling asleep or staying asleep or if you wake up in the middle of the night any trouble getting back to sleep?
Do you take any meds..even OTC meds? If so, what, dose and when do you take them?

Generally I try to get at least 8 hours of sleep. Sometimes I will wake up once and get up to go to the bathroom. I do not believe I toss and turn a lot. I fall asleep almost immediately. If I wake up I fall back asleep almost immediately. I feel like I sleep great, but I wake up exhausted and am usually tired throughout the day. I wake at 630am generally and most often cannot stay awake without dozing by 8pm.

The only meds I take are 1mg of melatonin an hour before bed. This helps me fall asleep without any issues. Sometimes I take Advil for body aches from being so tired. I have tried to stop the melatonin and it does not seem to effect me during the day any differently.

Corey

[Pugsy]

Is your main symptom exhaustion/fatigue and/or do you have daytime sleepiness..feel the need to nap? Do you take a nap?

Have you had a complete physical recently with all the usual labs? By any chance have you had your Vitamin D check? Thyroid checked?
Your ID is websiteguy...so I assume male...have you had testosterone checked?

What does your flow limitation graph look like on the daily detailed graph? Does it have much activity on it.

[websiteguy]

Is your main symptom exhaustion/fatigue and/or do you have daytime sleepiness..feel the need to nap? Do you take a nap?

Have you had a complete physical recently with all the usual labs? By any chance have you had your Vitamin D check? Thyroid checked?
Your ID is websiteguy...so I assume male...have you had testosterone checked?

What does your flow limitation graph look like on the daily detailed graph? Does it have much activity on it.

My main symptom is exhaustion/fatigue. I am not horrible during the middle of the day, but I am very tired in the morning and early evening. I often feel the need to nap, but I prevent myself so I sleep at night.

All of my labs were normal except that I do have a high marker for inflammation(SED Rate). I have seen many doctors for the inflammation and there has been zero issues found. I am a 32 year old male. I have had my vitamin D checked and sometimes it is a bit low. I have taken Vitamin d supplements in the past but did not see much difference taking them. I do not currently take any vitamin supplements. I have had my thyroid checked. I was on the low side of normal. I tried a supplemental dose of thyroid medication but this did not change very much. I have had my testosterone checked and it is on the lowest side of normal. I am slightly overweight, but my tiredness prevents me from being able to work out more frequently. Within the past 3 months I have also tapered off of zoloft for mild anxiety as my doctor believed this may be preventing me from going into REM sleep.

The overall feel from my primary care doctor and my sleep doctor was that the CPAP would help me signifcantly. I am kind of dissapointed as I have felt no relief.

As for the flow limitation graph, I will get that this evening when I am home!

Any ideas you think might benefit me would be greatly appreciated!

Corey

[Pugsy]

How long has it been since you have taken any Zoloft? You do know that one of the primary side effects to those medications is fatigue/drowsiness??

[Lukie]

Are you overweight and do you exercise at all? Diet and exercise can affect your fatigue levels. Just losing 10% of your current weight can make a huge difference.
Look at it this way. Imagine having to carry a 40 lb bag of dog food around with you everywhere you go. You would be pretty exhausted. The same with weight.
A good dietitian can help you a lot.
Exercise can also boost energy levels. Aim for 1/2 hour a day at first and then increase to an hour but check with MD before starting a diet and exercise regime.

[robysue]

websiteguy,

I have a great deal of empathy for your situation. My first three months of PAPing were plain out hellish and the next three felt like purgatory because of insomnia issues that had set in during the first three months. But I wanted to respond to your post because you write:

All of my labs were normal except that I do have a high marker for inflammation(SED Rate). I have seen many doctors for the inflammation and there has been zero issues found.

Prior to my OSA diagnosis, I'd been waking up with hand and foot pain for several years and it was always written off as a touch of some unspecified type of arthritis. I'd frequently complain of minor-to-moderate, but chronic achiness all over at my annual physicals and make special mention of the morning moderate to severe in my hands and feet that would get better as the day progressed; so the doc did several SED tests in the 5 years prior to my OSA diagnosis. Sometimes my pre-CPAP SED rate was slighly high, some times it was at the high end of normal. But no cause was ever found (although lupus was investigated at one point) and my SED rate was not alarmingly high, and hence the pain was just written off as a touch of some unspecified type of arthritis.

The very first sign that PAP was doing me some good was when I started to notice the phrase, "Woke up with no hand and foot pain this morning," appearing 3-4 times a week in my insomnia/sleep journal. This happened about 5 months after I started PAPing. If I hadn't been keeping the insomnia journal, the start of the "no hand and foot pain on waking" is something that I'm not sure I would have noticed right a way. But nothing else had changed as far as treating the hand/foot pain or the general achiness. When I asked the PA if it was possible that the hand and foot pain's disappearance might be related to the PAP finally doing me some good, she said, "Yes. It could very well be the result of PAP." She went on to explain that untreated OSA often can trigger low levels of inflammation throughout the body, and low levels of generalized inflammation can easily manifest itself as low grade, but chronic pain. By the end of 6 months of PAPing, I was waking up with no hand or foot pain 5-7 days out of every week. Even now, I have to say that's the number one (positive) difference that PAP has made in the quality of my daily life: I have significantly less levels of general achy pain now and hardly ever wake up with significant hand and foot pain.

I mention all this because it can take a while for the body to fully heal from the damage caused by untreated OSA. And perhaps the untreated OSA has been a contributor to, or even the major cause of, your inflammation issues. And perhaps that's why you are still feeling tired----your body is still working on healing itself of the inflammation indicated by the higher than normal SED rate.

Since you are 90 days into PAP and not really feeling much different, it's worth doing several things:

1) Keep a journal of how you're feeling---not just how you think you're sleeping. If you have symptoms of the inflammation that seems to have no cause, keep track of how those symptoms are being manifest. If you've usually had some pain on most days prior to starting PAP, keep track of your pain levels as well as how tired you feel during the day time. Perhaps with the aid of a journal you will start to notice some subtle, but important improvements in areas of your life other than the fatigue.

2) If you have not had a follow-up with the sleep doc, it's worth setting one up. Perhaps with your data and a full medical history, the sleep doc can shed some light into both why it is taking a while to start to feel better, how much longer you should be patient, and where to go from here if you're still not feeling any better in another couple of months.

3) As pugsy pointed out one of zoloft's side affects is fatigue. You said you've been weaned off the zoloft. How long have you not been taking it? It's worth asking the doc who prescribed it, "How long is it going to take for any zoloft-induced fatigue to start to go away?" And were you switched to a different anti-anxiety med? If so, it's worth asking about whether the new drug could be triggering fatigue.

I am slightly overweight, but my tiredness prevents me from being able to work out more frequently.

No one wants to hear it, but: More exercise (with in reason) usually helps you feel more energetic and less tired and less fatigued.

Yes, it's hard to force yourself to go do some exercise when you're really, really exhausted, particularly if "working out" means leaving your house and going to a gym. But sometimes even a very modest increase in the amount of physical activity during the day can help you find the energy to start doing more serious exercise on a regular basis.

On the days when you just can't "work out" because you feel too tired, it's worth trying to make yourself at least take a brief walk around the block after supper. In other words, for the time being start looking for opportunities to do some physical activity in very small chunks of time rather than thinking of the potentially overwhelming idea of "I ought to go to the gym and work out." Start with such simple things as:

• Park the car farther away from the door of the store or the door to the office you work in and walk a few feet further.
• Take the stairs instead of the elevator if you're only going up or down one or two flights.
• Walk around the block after supper if the weather is halfway decent
• Do some serious housework and acknowledge that it counts as exercise
• Find some kind of simple exercise that you like doing (well enough) and that you can do at home and try to do it for a mere 3-5 minutes a day for the next month. Any thing else is icing on the cake, but commit to doing that one simple thing for 3-5 minutes each day regardless of how tired you feel.

[archangle]

I find I feel better if I slightly increase the minimum pressure on my APAP. I'm thinking that I'm getting some sort of airflow restriction, even though it doesn't show up in my AHI.

[websiteguy]

How long has it been since you have taken any Zoloft? You do know that one of the primary side effects to those medications is fatigue/drowsiness??

About 45 days. Yes that is one of the reasons I went off of it.

[websiteguy]

Attached is my flow limitation graph:

[websiteguy]

websiteguy,

I have a great deal of empathy for your situation. My first three months of PAPing were plain out hellish and the next three felt like purgatory because of insomnia issues that had set in during the first three months. But I wanted to respond to your post because you write:

All of my labs were normal except that I do have a high marker for inflammation(SED Rate). I have seen many doctors for the inflammation and there has been zero issues found.

Prior to my OSA diagnosis, I'd been waking up with hand and foot pain for several years and it was always written off as a touch of some unspecified type of arthritis. I'd frequently complain of minor-to-moderate, but chronic achiness all over at my annual physicals and make special mention of the morning moderate to severe in my hands and feet that would get better as the day progressed; so the doc did several SED tests in the 5 years prior to my OSA diagnosis. Sometimes my pre-CPAP SED rate was slighly high, some times it was at the high end of normal. But no cause was ever found (although lupus was investigated at one point) and my SED rate was not alarmingly high, and hence the pain was just written off as a touch of some unspecified type of arthritis.

The very first sign that PAP was doing me some good was when I started to notice the phrase, "Woke up with no hand and foot pain this morning," appearing 3-4 times a week in my insomnia/sleep journal. This happened about 5 months after I started PAPing. If I hadn't been keeping the insomnia journal, the start of the "no hand and foot pain on waking" is something that I'm not sure I would have noticed right a way. But nothing else had changed as far as treating the hand/foot pain or the general achiness. When I asked the PA if it was possible that the hand and foot pain's disappearance might be related to the PAP finally doing me some good, she said, "Yes. It could very well be the result of PAP." She went on to explain that untreated OSA often can trigger low levels of inflammation throughout the body, and low levels of generalized inflammation can easily manifest itself as low grade, but chronic pain. By the end of 6 months of PAPing, I was waking up with no hand or foot pain 5-7 days out of every week. Even now, I have to say that's the number one (positive) difference that PAP has made in the quality of my daily life: I have significantly less levels of general achy pain now and hardly ever wake up with significant hand and foot pain.

I mention all this because it can take a while for the body to fully heal from the damage caused by untreated OSA. And perhaps the untreated OSA has been a contributor to, or even the major cause of, your inflammation issues. And perhaps that's why you are still feeling tired----your body is still working on healing itself of the inflammation indicated by the higher than normal SED rate.

Since you are 90 days into PAP and not really feeling much different, it's worth doing several things:

1) Keep a journal of how you're feeling---not just how you think you're sleeping. If you have symptoms of the inflammation that seems to have no cause, keep track of how those symptoms are being manifest. If you've usually had some pain on most days prior to starting PAP, keep track of your pain levels as well as how tired you feel during the day time. Perhaps with the aid of a journal you will start to notice some subtle, but important improvements in areas of your life other than the fatigue.

2) If you have not had a follow-up with the sleep doc, it's worth setting one up. Perhaps with your data and a full medical history, the sleep doc can shed some light into both why it is taking a while to start to feel better, how much longer you should be patient, and where to go from here if you're still not feeling any better in another couple of months.

3) As pugsy pointed out one of zoloft's side affects is fatigue. You said you've been weaned off the zoloft. How long have you not been taking it? It's worth asking the doc who prescribed it, "How long is it going to take for any zoloft-induced fatigue to start to go away?" And were you switched to a different anti-anxiety med? If so, it's worth asking about whether the new drug could be triggering fatigue.

I am slightly overweight, but my tiredness prevents me from being able to work out more frequently.

No one wants to hear it, but: More exercise (with in reason) usually helps you feel more energetic and less tired and less fatigued.

Yes, it's hard to force yourself to go do some exercise when you're really, really exhausted, particularly if "working out" means leaving your house and going to a gym. But sometimes even a very modest increase in the amount of physical activity during the day can help you find the energy to start doing more serious exercise on a regular basis.

On the days when you just can't "work out" because you feel too tired, it's worth trying to make yourself at least take a brief walk around the block after supper. In other words, for the time being start looking for opportunities to do some physical activity in very small chunks of time rather than thinking of the potentially overwhelming idea of "I ought to go to the gym and work out." Start with such simple things as:

• Park the car farther away from the door of the store or the door to the office you work in and walk a few feet further.
• Take the stairs instead of the elevator if you're only going up or down one or two flights.
• Walk around the block after supper if the weather is halfway decent
• Do some serious housework and acknowledge that it counts as exercise
• Find some kind of simple exercise that you like doing (well enough) and that you can do at home and try to do it for a mere 3-5 minutes a day for the next month. Any thing else is icing on the cake, but commit to doing that one simple thing for 3-5 minutes each day regardless of how tired you feel.

Robysue-
Your situation sounds very similar to me. I have for many years complained of general achiness. Lupus has been investigated as a possible cause but it has never been officially diagnosed. I really like your idea of a journal.

thank you so much for writing what you did. It is giving me some hope that someday I will not be exhausted!

Corey

[Pugsy]

The flow limitation chart isn't very exciting. I have seen much worse. We have never been able to find a flow limitation guide to know with much certainty exactly when does it start amounting to something to worry about though.
I also don't know what the Zoloft ramifications might be after this length of time. I would think that after 45 days it should be gone totally but I don't know if it's absence has caused part of your problems. That level of evaluation is above my pay grade.
Did they replace it without something else or are you without meds at this time? How is the problem, that the Zoloft was given for, going?

I don't see anything on these reports that points out or screams "fix me". Sometimes it does just take some time even when everything else looks superb. We would like for it to happen sooner than later but sometimes it just doesn't...and sometimes people can't find a reason and still experience the daytime fatigue and excessive sleepiness long term.

All I know to say or offer is keep plugging along and watch closely for any things that might be a contributing factor.

[wm_hess]

[
The only meds I take are 1mg of melatonin an hour before bed. This helps me fall asleep without any issues. Sometimes I take Advil for body aches from being so tired. I have tried to stop the melatonin and it does not seem to effect me during the day any differently.

Corey

Hi Corey

You may want to check out this thread viewtopic/t94470/viewtopic.php?f=1&t=93 ... 57#p865557 regarding sleep aids. Basically a study at MIT found 1/3 of 1mg of Melatonin is the optimal dosage for adults over 50.

-Bill

[49er]

The flow limitation chart isn't very exciting. I have seen much worse. We have never been able to find a flow limitation guide to know with much certainty exactly when does it start amounting to something to worry about though.
I also don't know what the Zoloft ramifications might be after this length of time. I would think that after 45 days it should be gone totally but I don't know if it's absence has caused part of your problems. That level of evaluation is above my pay grade. Did they replace it without something else or are you without meds at this time? How is the problem, that the Zoloft was given for, going?

Some disclaimers before I make my point. I am not a doctor and what I am about to say may or may not apply to Corey so here goes.

As an FYI, many people I know on the antidepressant withdrawal boards have had withdrawal symptoms way past 45 days, particularly if they tapered off of the drug too quickly. So it is conceivable that the Zoloft he was on could still be an issue.

Also, med changes that are done too quickly can also cause fatigue and exhaustion.

But the fatigue could have nothing to do with the Zoloft so please keep that in mind. Always check with your doctor to be sure.

49er