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UARS mimics CFS - DO YOU HAVE IT?

Discussion in 'Other Health News and Research' started by Boule de feu, May 15, 2011.

  1. Boule de feu

    Boule de feu Senior Member

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  2. Boule de feu

    Boule de feu Senior Member

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    From the link above:

    "Although a mild decrease in airflow while sleeping may not seem like a big problem, it has been shown to disrupt sleep enough to cause and/or perpetuate CFS/FMS."
  3. ukxmrv

    ukxmrv Senior Member

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    "Weight Gain and Immunity: Stress increases your cortisol levels, which promotes weight gain, insulin resistance, and lowers your immune systems ability to fight infections"

    I don't know if this is a guess or a finding on their part. PWCFS have low cortisol and not high cortisol so that may be an easy way to tell the difference between them.

    Also the immune system part. Is this a real finding and if so, which parts?

    I know quite a few CFS people who have been treated for sleep apnea but still have their symptoms.

    Can't see how this would cause an acute onset viral disease though on a previously healthy adult with no breathing problems. To say that it could mimic CFS would need a qualifcation on which criteria and sounds more like ideopathic Chronic Fatigue rather than CFS.
  4. Enid

    Enid Senior Member

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    All very familiar to me too Boule de feu to the extent of sudden waking and realising I was not breathing (standing by an open window and "pumping" the chest/lung muscles sort of eased). But I agree with your Doc - I don't think the whole ME/CFS profile is explained.
  5. Boule de feu

    Boule de feu Senior Member

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    I am one of them. I have been treated for UARS and I still have the symptoms.
    I feel that I am not as oxygen-deprived, though (when I get to use my machine and keep it all night long).

    I have low cortisol, too. Maybe this is why they can't explain the whole picture?
    The specialist said that I was suffering from a neurological disease with UARS.
    I would have to find my polysomnography papers to see what was written. I can't remember the exact words.

    I am very thin. This is why my GP was reluctant to send me to a sleep study specialist. He thought it was a waste of time and they would not find anything.
  6. Boule de feu

    Boule de feu Senior Member

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    I'm glad I bought a CPAP machine. I still use it even though it does not solve my problems.
    It makes me breathe better during the night. Too bad I can't use it during the day, as well.
  7. Boule de feu

    Boule de feu Senior Member

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    It seems that this article is a "too easy" way to explain CFS...
  8. Boule de feu

    Boule de feu Senior Member

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  9. alex3619

    alex3619 Senior Member

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    Hi, I think this a complex topic, and probably way beyond my area of expertise, but I would like to make a few comments.

    First, about half of all ME/CFS patients have obstructive sleep apnoea or something similar according to one study I can dimly recall. About half of those did not respond to CPAP. I fit this last category - CPAP is useless to me. My problem in part stems from non-allergic rhinitis, so steroids don't treat it. Many of us have a mucus problem and that alone will make sleep quality worse.

    At most I would say that airway issues might be potentially causal in only one in four patients, with one in four having it as a contributing factor. So many of us have airway problems and treatment doesn't work for about half of those - the treatment was of course developed for non-ME/CFS patients. This of course ignores subtle airway problems as we have no prevalence data - maybe its a factor for many of us, but I would be careful about treating it. Many who want to fix it are surgeons, and do tongue and throat surgery. If the problem is functional, due to immune or metabolic issues, this would be a bad solution choice. My take on this is to check it out really carefully if you are offered surgery for breathing problems. CPAP on the other hand, as well as other non-surgical procedures, are relatively risk free and might be worth trying if your sleep study shows an airway problem. At the very least every ME/CFS patients should have a sleep study - even if only some of the issues are treatable, it could help cope with other symptoms.

    Bye
    Alex
  10. ukxmrv

    ukxmrv Senior Member

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    Does UARAS have a WHO code or a recognised set of diagnostic criteria that the CDC would recognise?

    That's always a problem when comparing two diseases or syndromes. How well defined are they and what does the patient gain from a diagnosis with a syndrome or if they are not well defined?
  11. Boule de feu

    Boule de feu Senior Member

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    Nope. Not recognized.

    In Wikipedia -
    There is question in the medical community as to not only the existence of this syndrome, but whether it should be classified as a separate syndrome or part of the larger group Sleep-disordered Breathing (SDB).

    I know there is something wrong with my sleep because I can't sleep long. I often wake up during the night (I believe they found 8 times per hour).
    The CPAP is not working for me, either. Well, it did not change the severity of my symptoms
    but I feel that I can breathe better at night (when I can tolerate having it on my nose).
    It's more oxygen to my brain, for sure.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    A sleep specialist thought I had this--but most sleep studies don't have the equipment to detect it. As I understand, CPAP is not helpful for this. I don't have apneas, but had 98 partial awakenings, no stage 3 or 4 sleep.

    I never followed up on it to discover what the treatment would be but I don't think he was recommending surgery.

    I didn't follow up on it partly because I thought it was probably caused by the ANS and I got more involved in trying to treat that aspect. I'm still leaning in this direction, though I may well be wrong.

    Sushi
  13. Boule de feu

    Boule de feu Senior Member

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    I am re-posting this thread.

    I found an article on the subject. It's a year old.

    http://doctorstevenpark.com/brain-damage-in-chronic-fatigue-syndrome-and-sleep-apnea

    Dr. Park has an unusual view on this:

    However, the upper airway anatomy in most CFS patients are more like people who have upper airway resistance syndrome. Their upper airways are so narrow that their nervous system become overly sensitive to any degree of airway obstruction. As Ive stated before, UARS patients wake up to a light stage of sleep, even with very subtle degrees of breathing obstruction. These pauses are not long enough to be called apneas. This causes a chronic low-grade physiologic state of stress, which by itself is known to be detrimental to brain health.

    What do you think?
  14. CatherineF

    CatherineF

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    I am struggling with very unrefreshing sleep, severe exhaustion, waking up many times at night, hypoglycemia etc. I susspect UARS, since I was not able to sleep on a sleep study I've got an autocpap machine at home. It is difficult to sleep with because I have very fragile nervous system, but sometimes when I do sleep with it, I feel better and when I check out my grpahs I can see many flow limitations and snoring. Basicly it means that I have problems with breathing during sleep. UARS causes frequent awakenings, it is the reason people are not able to achieve 3 and 4 phase of sleep, considered deep and refreshing. It is impossible to regenrate with such disturbed sleep.And UARS is very often overlooked, since if there are no apneas or hypopneas "everything is fine". This is a huge misunderstanding.

    Regarding cortisol levels, I susspect that at the beggining of problems with sleep-disturbing breathing almost everyone had high cortisol caused by constant microawakenings, over time adrenals got exhausted which caused low cortisol levels. I am suffering from UARS due to bad orthodontia, I remember that at the begging of my problems there was insomnia, huge nervousness, depression, but no fatigue or exhaustion.
  15. SickOfSickness

    SickOfSickness Senior Member

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    I suspected UARS in myself for a while. Diagnosed with obstructive sleep apnea via sleep study, but I have always wondered if it my apnea only happens because of UARS. The sleep physician was not an understanding doc and rushed, so I didn't bother asking for UARS distinction. I don't think they do that anyway. (Sushi said "... most sleep studies don't have the equipment to detect it...")

    Before getting my sleep study, and after the diagnosis, I felt that everyone should get the sleep study. Now I am unsure because of so many being unable to tolerate the machine or mask. If you cannot, then it might be a big waste of money. Also, if someone cannot fall asleep for the study. The machines are supposed to be prescription only but I suggested that my friend borrow a machine. I doubted that the friend could tolerate a machine and we thought it would be a waste of money to get a sleep study. I wonder if CFS patients may have variations in sleep as well, which would only appear on the study on certain nights, such as nights they had PEM. And apparently some sleep physicians may lack understanding (as mine did) about fatigue, insomnia, problems with circadian rhythms. On the other hand, if someone gets a diagnosis of sleep apnea, that is taken more seriously by future docs.

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