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Experiences with sleep apnea treatment amd ME/CFS

Discussion in 'Sleep' started by kikala, Jun 10, 2017.

  1. kikala


    hi folks,

    I recently did a home sleep study and was told that I have moderate obstructive sleep apnea. The results show that my O2 saturation was at or below 88% for 123 minutes during the night. My primary care is adamant that I get treatment and seems confident that I'll feel better.

    But as we all know, nothing is simple with ME/CFS. I've been sick for 27 years, and have had interrupted and nonrefreshing sleep, as well as debilitating exhaustion, since then. About a year into my illness I had a sleep study and was told I had no apnea.

    I will try the CPAP and other treatments, though I'm wary because I know many people have difficulties adjusting to the masks and my sleep is so fraught as it is. I'm wondering though if others have been diagnosed with apnea and whether or not treatments have had any impact on your fatigue or any other ME/CFS symptoms?? I searched the boards and found very little about this, but have also seen that a significant percentage of people with ME/CFS also have sleep apnea.

    Plus, I just need to say, I am feeling so PISSED at this illness lately! The symptoms of ME/CFS are bad enough, but now, after many years of being sick and sedentary, I also have prediabetes, high blood pressure and high cholesterol. It just doesn't seem FAIR the ME/CFS makes me more susceptible to other illnesses. It really sucks.

    Thanks for any feedback!
  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

    Just try the CPAP. It will not cure your ME/CFS, but it will treat your obstructive sleep apnea. Treating anything that is treatable should relieve the symptoms caused by that problem and any exacerbation of ME/CFS it causes.

    Most people do just fine on CPAP. All most all of the difficulties that people encounter are easily overcome with a little patience and trying the solutions recommended by their doctor's and home care companies.

    Let me know how it goes.
    Valentijn and *GG* like this.
  3. *GG*

    *GG* Senior Member

    Concord, NH
    I agree with @Never Give Up. It is not likely to Cure you, but perhaps it will help a little?

    Just use the equipment to the best of your abilities :)

    I have had 3 sleep studies now, First 1 a few years intot he illness. Little REM sleep was found if I recall correctly. Had a crash and became very disabled in 2009, not sleeping well still, had a sleep study done, and was found to have OSA. I joined the forum that year as well, and read about Oxygen, so with my low readings like yours, I was able to be prescribed Oxygen while I use my CPAP.

    I seem to do better than most, is all because of this? I don't know, probably not, but figure why Not do it?!

    Never Give Up likes this.
  4. TenuousGrip

    TenuousGrip Senior Member

    My SIL does NOT have ME/CFS but was Dx'd with fairly severe sleep apnea a few months ago.

    The C-PAP has given her back her life. She was exhausted, had chronic pain, and horribly non-refreshing sleep.

    Not any more :)

    I hope your trial does as much good for you as hers has for her.
    Valentijn and Never Give Up like this.
  5. BruceInOz

    BruceInOz Senior Member

    I have been using a CPAP machine (actually a BPAP - the B is for bi since it has higher pressure when breathing in than breathing out) for over a year now and ME for 22 years. I have not noticed any improvement in my ME symptoms. If anything I have been deteriorating a little over the last couple of years. I still wake up feeling very unrefreshed yet have probably been sleeping better.

    I was managing my sleep apnea by ensuring I only slept on my side but as I get older that has been leading to connecting tissue injuries in my shoulders and hips. The CPAP has helped in this regard (by allowing more freedom in sleeping position through the night) but has made no difference to anything else.
    Never Give Up likes this.
  6. kikala


    Thanks BruceInOz, I am afraid this will be true for me too, but I will definitely try to be sure.

    And I have the same problem with pain in my hips and neck from lying on my side so often over so many years. I used to have wretched ME symptoms but no chronic pain, but that changed a little over a year ago.

    I'm meeting with a sleep specialist in 2 weeks and will report back.
    Never Give Up and BruceInOz like this.
  7. MikeJackmin

    MikeJackmin Senior Member

    The CPAP can take some adjustment but it is more than worth it. 'Moderate' sleep apnea is bad. I think it would be almost physically impossible for you not to feel significantly better once you stop being hypoxic at night.
    Never Give Up likes this.
  8. Mesurfer


    It was of no help to me. I still have all the equipments and think about giving it another try...
    *GG* likes this.
  9. StrivingOn


    Apnea varies in its causes and severity. CPAP/BiPAP can help and modern machines rarely take long to get used to, but for each person whose life it transforms there are dozens who see a benefit that trails off after a few months or get little benefit in the first place.

    There are several specialist apnea sites. I prefer http://www.apneaboard.com/forums/

    My experience is as follows:
    • After 30+ years of never feeling fully refreshed after sleep I was suddenly hit with chronic fatigue/CFS/ME.
    • A couple of years later, still suffering from CFS/ME, a home study with a pulse oximeter showed my SPO2 (ie oxygen) levels falling too low several times a night.
    • A CPAP machine helped considerably, albeit still leaving 2/3 of my fatigue.
    • The effects gradually wore off and I began to have increasing episodes of air hunger. My machine settings were adjusted, only to precipitate/coincide with a horrible increase in my CFS/ME.
    • Changing the CPAP settings back improved matters but still left me worse than before the machine settings were changed.
    • My direct apnea scores were very low with the machine but the complex/unexplained apneas (CA) were normally poor and sometimes horrible, so I started using a BiPAP machine.
    • I've not noticed any difference with the BiPAP machine, although my CA scores are now zero, probably due to the machine now not recording them. I have a review in a few weeks time and don't expect anything to come from it.
    • The machines probably do me some good, but the hope of a CFS/ME cure and subsequent false dawns have been dispiriting.
  10. caledonia


    Cincinnati, OH, USA
    I wouldn't expect it to cure ME, but it may provide some help with energy and concentration if it helps you get better sleep.

    My sister uses a CPAP and has tried many kinds of masks. She's settled on a nasal pillow type of mask as being the most comfortable.
  11. kikala


    Thanks so much, StrivingOn -- it's helpful to hear your experience.

    I'm scheduled to get the CPAP mid August -- I'll report back on how it goes.

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