Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Sleep Apnea

Discussion in 'General ME/CFS Discussion' started by Omri, Oct 10, 2015.

  1. Omri

    Omri

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    Hey,
    I have not been officially diagnosed with CFS yet. My GP has referred me to a CFS specialist and I will be seeing her shortly.
    Reading though these forums, I'm 95% sure I have CFS. My symptoms include PEM, brain fog, persistent fatigue all the time (not sleepiness), stomach problems, stuffy nose and phlegm in the morning. I've had these symptoms for around two years and have done blood, stool, urine, ultrasound, and x-ray tests. All the tests are normal.

    However, I'm not 100% I have it, because I have no pain whatsoever, no temperature regulating problems, no heart or neurological problems and no sleep problems (Sleep is not refreshing ,but nothing other than that)

    I went to see an ENT and he told me I have slightly large tonsils and he told me to take a sleep test, to check for OSA. I think there might be no point in doing this test, as from what I read my symptoms cannot be explained by OSA. I mean, how can OSA explain PEM with flu-like symptoms?

    Should I just skip the sleep test and just wait to see the CFS specialist? I'm getting tired of doing all these tests that are seemingly pointless.

    I'm also going to see an endocrinologist, although my TSH is normal according to blood tests, and I don't have swollen lymph nodes.
     
  2. jess100

    jess100 Senior Member

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    I had a sleep test and they said I wake up many, many times during the night-several times per hour. However, the people giving the test were the same people renting the positive pressure machine. You should be aware of this. Later my boyfriend watched me sleep for several hours and said my breathing was completely regular. I'm not convinced this particular test was accurate.
    In truth I did feel better the few nights used it BUT ended up with a bronchial (?) infection and sounded like Darth Vader for a few days. Ended up being prescribed MORE antibiotics (but I don't think I took them). So if you do the sleep test be sure there's no conflict of interest so that at least you can believe the results. Maybe it would be good to do the test before the CFS specialist (and bring the results) so that can be ruled out or ruled in. If anyone can listen in on your breathing during sleep that might help too.
    I think you're correct that lack of sleep would not result in PEM, but not absolutely sure about that.
    You are wise to think ahead about getting to the bottom of this, and not wasting your time.
    Also be thankful your doctor had the good sense to refer you to a CFS specialist. Many don't-and just waste more of our time.
     
  3. knackers323

    knackers323 Senior Member

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    @Omri your symptom profile is almost identical to mine. I don't have a 'sick' cold or flu feeling either.

    How did your symptoms start?
     
  4. Omri

    Omri

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    Israel
    @knackers323 i wouldn't say it's completely not flu like. Occaisionaly i have an itch in my throat and i have stuffy nose. When i have PEM, then it kinda feels like the flu.
    Also, i get periodically sick.

    I'm not sure how it started. I started getting sick very often, doctors said it was a viral infection each time. But in between i was fine. Eventually, i had stomach problems and loss if apatite persistently, and then constant fatigue. I think it was a gradual onset.
     
  5. ChrisD

    ChrisD Senior Member

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    East Sussex
    Hi, I have a similar onset of symptoms to you and have seen a Specialist and received the CFS diagnosis (Whatever that means!) However I am starting to wonder if I have Sleep Apnea. I don't sleep with anyone so there is noone to tell me if I am not breathing properly, often when I wake in the morning, I take quite a large refreshing breath. This could be completely normal but it feels a bit like I haven't really been breathing as much as I should be in my sleep, and hence have fatigue, stiffness, brain fog etc.

    I wonder if it is a Chicken and egg scenario, does the CFS come first and it causes some sleep apnea or vice versa?
     
  6. BruceInOz

    BruceInOz Senior Member

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    Tasmania
    I also wonder this. My ME was sudden onset after virus in 1994. Ten years ago I had a sleep study which showed obstructive sleep apnea but normal if I sleep on my side. I managed it for years by forcing myself to sleep on my side but always worried about whether I really was controlling it. I have now spent one year with a BPAP machine which verifies that my apnea episodes are now within normal. But I still feel as unwell or worse than ever. Fixing the sleep has not fixed the ME.

    I am sure that those who only have sleep apnea find the inconvenience of the wretched machine is worth it because it makes them feel better. But for me I only get the inconvenience! However, I will persevere with it.

    One of the early weird but I thought inconsequential symptoms that I noticed back in 1995 was that it felt like my tongue was swollen slightly. I have always thought this is probably the reason for my sleep apnea which makes the sleep apnea a symptom of my ME in my mind.
     
    ChrisD likes this.
  7. ChrisD

    ChrisD Senior Member

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    East Sussex
    At all times of the day, I feel that my nasal passage is slightly inflamed, it is only when I take High doses of Vitamin C that I feel that I can breathe clearly and then also sleep well. I wonder if the constant low grade inflammation that is occurring with ME is disrupting sleep through both obstructed breathing and potentially also inflammation in the brain which limits slow wave sleep
     
    BruceInOz likes this.

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