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Just Diagnosed - Anyone else also have CFS?
#1
Just Diagnosed - Anyone else also have CFS?
Hello people - I'm so glad I found this great board and all the good info here.  This is all NEW to me!  

I was just diagnosed on Tuesday with "mild" obstuctive and central apnea.

I've been disabled with ME/CFS for over 30 years and had recently been diagnosed with pulmonary hypertension and hypoxia.   The cardiologist started me on oxygen and a dizzying investigative search for the cause of the PH.   After ruling out a list of potential causes I ended up with the pulmonolgist who suspected SA.   Bingo!   He has ordered an APAP to start,  but said I may have to switch to an AVS if this doesn't work out.   I'm waiting or  the DME to call.

Looking back over the past 30 years I see that I've probably had this all along.   I have periodically bolted upright in bed while sleeping unable to breath.   I never suspected SA though because I've never been "sleepy" - Bone crushing fatigue always,  but not sleepy.   In fact I couldn't fall asleep in the daytime if you paid me. Smile

Sleep problems are a common problem with ME/CFS and I'm curious to hear from people here who also have CFS.  How has CPAP treatment impacted your CFS?      I'm trying not to get my hopes up too much,  but I have to wonder how many of my symptoms have been caused from SA as opposed to ME/CFS.  

I really hope I will be able to post something in the CPAP success stories thread some day.    

I know I'll have a lot more questionsThanks
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#2
RE: Just Diagnosed - Anyone else also have CFS?
Whether you respond to auto CPAP or require ASV you have come to the right place. I think in your case it might be advantageous to do a clinical CPAP titration study to see if you have CPAP emergent central apnea, but if not we can help you navigate the process and better understand what is going on.
Sleeprider
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#3
RE: Just Diagnosed - Anyone else also have CFS?
Thank you Sleeprider -  The doctor mentioned that possibility too.   We'll see how it goes.
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#4
RE: Just Diagnosed - Anyone else also have CFS?
Hi Suzi,
Welcome!
I don't have ME/CVS but I  did have severe B12 deficiency and followed Freddd's protocol for a couple of years. I'm just assuming you know of Freddd. He has ME/CFS and posts on PhoenixRising, with some different ideas about CFS and B12. i posted a bit there as well and check in every once in a while.
Did you get a copy of your sleep study? As you start to learn about sleep apnea you will want to refer to your original study. Sometimes they will just give you a short summary. If that is the case, see if you can get something more in depth.
You say that you have been diagnosed with Mild Sleep Apnea. How mild? Do you know your AHI?
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#5
RE: Just Diagnosed - Anyone else also have CFS?
Hi Mogy.  Thank you!   Yes, I'm familiar with Freddd at Phoenix Rising and follow the research at Health Rising/Simmaron.

 I didn't get a copy of the study but they did show it to me and explained it.    My AHI was 12.   But I only slept about 3 hrs and not very deeply  because I had bronchitis when I did the study.  So,  I don't know if that short of time sleeping gave a clear picture.   They explained that I had some centrals but mostly OSA, - but I was so tired I don't remember it all.     

When I get the APAP they want me to download the data every day and bring it with me in 3 months.   They may want to do another test in the lab as the first was a home study.
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#6
RE: Just Diagnosed - Anyone else also have CFS?
Welcome!!! You're in the right place!

I believe I had CFS. I never got diagnosed because no doctor ever took my fatigue seriously; they always blamed it on my lifestyle.

Several years ago (before I knew I had sleep apnea), I told my DH "In a few years, I'm going to need you to not allow me to drive at night." *Now* I realize it was undiagnosed sleep apnea causing my problems!

Like you, I had bone-crushing life-sucking fatigue, but could hardly sleep. No wonder my body didn't want to sleep - it didn't want to get suffocated!

Thank goodness for CPAP machines! I now have a quality of life I never knew was possible!
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#7
RE: Just Diagnosed - Anyone else also have CFS?
(05-04-2018, 02:46 AM)Hydrangea Wrote: No wonder my body didn't want to sleep - it didn't want to get suffocated!

Thank goodness for CPAP machines!  I now have a quality of life I never knew was possible!

I will echo both of those and say "Yes, absolutely", except from the point of view of someone who is just starting out on CPAP.  The difference that it makes is extreme.  I, too, for the longest time had that strange reluctance to go to bed at a reasonable time of the evening: I would find all sorts of excuses, and try to tell myself "Hey, self, you're not really all that tired yet!  So just read a book, or mess around on the computer, or shmooze with the cat, or whatever."  It was pitiful.  And now I see that it was caused by the instinctive shying away from an upcoming painful experience: the body was saying "Oh, no, not that ordeal again, please."

But now I've got religion.

And speaking of the psychology, I suspect that one thing that puts some beginners off of CPAP just a little bit, makes them reluctant to dive into it, is that it is a regimen.  It has to be strictly adhered to, or you don't get the benefits.  This would be a matter of "No pain, no gain" if there were any actual pain involved, but there isn't; there's only some discomfort and inconvenience, along with getting used to a new habit as part of one's daily routine.  And the results are well worth it, to say the least.  I mean, not that there should really even be a choice, because we're talking about a serious, life-threatening medical condition that must be treated.  Fortunately, the treatment is not at all painful.
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#8
RE: Just Diagnosed - Anyone else also have CFS?
Yes. 34 years with CFS.

I started with APAP about two years ago. It helped at first, and then it didn't (as Centrals became an increasing problem). Those led to ASV.

ASV has given me some nights of miraculous sleep (instead of the thrashed sleep typical with CFS). Those "amazing" nights have been a small percentage of the total, but the over-all sleep quality is way up.

ME/CFS with (typical) thrashed sleep is much worse than CFS with reasonable sleep.

Welcome to the forum!

Bill

ETA: Make sure your first machine has the ability to record full efficacy data (not just compliance data). It is essential to monitor your condition using the free Sleepyhead software (especially with mixed/central apnea). That way you'll know if you'll need ASV (or not).

If you can get a ResMed AirSence 10 Autoset APAP with a heated hose to start (Regular or "For Her" models) all the better IMO.
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#9
RE: Just Diagnosed - Anyone else also have CFS?
(05-04-2018, 02:46 AM)Hydrangea Wrote: Thank goodness for CPAP machines!  I now have a quality of life I never knew was possible!

Thank you for the encouragement Hydrangea.  I'm happy to hear yours had a happy ending!
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#10
RE: Just Diagnosed - Anyone else also have CFS?
Fats - So glad this has made such a big difference.    I'm also glad for the encouragement to keep hanging in there even if it's rough at first. Thanks!
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