New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums.

Feeling worse after waking up.

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Omri, Oct 6, 2015.

  1. Omri

    Omri

    Messages:
    15
    Likes:
    12
    Israel
    I always feel worse right when I wake up and continue to feel that way for around 5 hours (high brain fog, intense fatigue, lack of appetite, phlegm). Towards the evening my energy levels are higher (though still very low compared to a normal person).

    I've noticed that sometimes I don't feel this way if I sleep for only two hours or so (tired, but in a normal way), although eventually I do crash during the day.

    I was wondering if anyone else has this same issue and can perhaps suggest any reasons for this. I also haven't seen many people posting about stuffy nose or phlegm when waking up, and want to know if others have this symptom.

    Omri
     
  2. John Mac

    John Mac Senior Member

    Messages:
    315
    Likes:
    1,512
    Liverpool UK
    Same for me Omri. feeling at worst when I wake then slowly improve as the day goes on.
    Is it something to do with lactic acid in the muscles which clear as they get used during the day?
    Can anybody suggest what to test for? Cortisol?
     
    justy likes this.
  3. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,322
    Likes:
    4,357
    London
    I am worse in the mornings and it follows my cortisol pattern. Symptoms for me though are weakness, unsteadiness, brain fog, nausea to vomiting and more.

    I only get a stuffed nose when I have a sinus infection or a cold but this could go on for months

    I do find that sometimes when I don't sleep I feel a lot better in the mornings. This is really noticeable.

    Go to bed feeling the best physically that I can do and the next morning feel like death warmed up.

    It is like something resets when I sleep at night. Not sleeping is better or sleeping through the bad mornings and getting up at lunchtimes.

    Just thinking about the stuffed nose Omri, have you looked at sleep apnea?
     
    Last edited: Oct 6, 2015
    Misfit Toy likes this.
  4. Debbie23

    Debbie23 Senior Member

    Messages:
    137
    Likes:
    293
    I have this, pretty much every single day. My energy is more like a roller coaster than a curve though, my pattern pretty much goes;

    Feel awful on waking, especially if I wake earlier in the morning according to a 'normal' day time routine. Several hours later after waking I usually feel a bit better. Early - Mid evening feel rotten again. Late evening to early morning, I have my best hours of the day. Then I start feeling ill again as the night/ early morning passes and then I can go to sleep In the early hours of the next day.

    This pattern can shift sometimes but it's my usual. Obviously the 'I feel better' is relative for me, and like you I still feel ill at these points. I also have recurrent sinus issues and stuffy head, especially when during a crash, feels like I have a head cold even i definitely don't. I really don't know what the answer is for this, I just assume it's specific to particularly bad PEM, like the raging sore throats and ear ache.

    I also have times when I feel better (again relatively speaking) for less sleep which is a odd as unlike some with the illness, I do suffer with pretty severe fatigue daily. I have a heart rate monitor which also measure sleep, dividing it into REM, deep and light and monitors how active you've been in terms of tossing and turning around in your sleep, and then gives a sleep quality rating. I have noticed the quality of sleep rating goes down significantly when I have longer blocks of sleep; and occasionally when in theory I ought to have had a better night, I felt I've been more solidly asleep and woken less to go to the toilet etc. it's really strange. Edit because this wasn't Really clear! I mean the HR monitor indicates that I have had a 'worse' night when I've slept longer in a way that goes along with how I feel on waking.

    I have, unfortunately no idea what the answer is other than to just go with it, I hope someone else can give some answers though that can help.
     
    Last edited: Oct 6, 2015
  5. gregh286

    gregh286 Senior Member

    Messages:
    591
    Likes:
    817
    Londonderry, Northern Ireland.
    hi,
    I have ALWAYS been like that too.
    I narrowed it down to a few things:
    1. Cortisol Circadian rythm creating some sort of autoimmune effect. My rationale for this is if I have to get up at 3 or 4am....you dont get the awful morning fatigue....you sort of skip it.
    2. Most autoimmune issues are worse at night,....its been proven....Our autoimmune conditions worsen during sleep pattern. As we breath lower and heart rate decreases also its possible lactic build up exacerbates.
    3. A mast cell degranulation in early hours morning. Mast cell have circadian rythm.

    I often thought CFS might be an autoimmune reaction against cortisol, hence the groundhog effect....ok ish at night and mangled in the morning.
    Its not news that CFS symptoms worsen in high stress.
     
    Beyond likes this.
  6. Omri

    Omri

    Messages:
    15
    Likes:
    12
    Israel
    So do you think reducing cortisol levels could somehow relieve symptoms?
     
  7. gregh286

    gregh286 Senior Member

    Messages:
    591
    Likes:
    817
    Londonderry, Northern Ireland.
    i tried it some time ago with phosphatidylserine....seemed to help from memory.
    Need to give a better trial.
    took 400mg a day.
     
  8. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    Sometimes those kinds of symptoms are the result of hypovolemia (low blood volume) as a result of aldosterone or vasopressin deficiency. Hypovolemia is very common in ME.

    In the case of hypovolemia, you feel worse in the morning because you get very dehydrated overnight when you are not taking in fluids. You feel better as the day progresses because you get fluids in you over the course of the day. You can compensate a bit by fluid loading -- drinking 500-750 ml immediately before bed and again before you get out of bed in the morning (and waiting to get out of bed until the fluid gets into your system, ~30 mins). That is rarely sufficient for PWME, so many of us take either Florinef or Desmopressin.

    A very rough way to check for hypovolemia is to take your blood pressure before you get out of bed in the morning. Pulse pressure (systolic minus diastolic) is often low (less than 30ish) in hypovolemia. This is not a gold standard test, just a clue. Proper diagnosis should be done by a knowledgeable physician who can then prescribe any necessary medications/treatments.

    You might want to do a search on PR for hypovolemia, Florinef, Desmopressin, and orthostatic intolerance.
     
    Sidney and ahimsa like this.
  9. WoolPippi

    WoolPippi Senior Member

    Messages:
    506
    Likes:
    1,369
    Netherlands
    yeah me too.

    I take hydrocortisone, 2 mg as soon as I open my eyes, and lie back on my pillow to wait for 45 minutes for it to take effect. (It has to be processed by the liver and made into cortisol). During those 45 minutes I'm a zombie, just lying in my bed, waiting. Not thinking. Nowadays I browse a bit of funny stories on the internet.
    Around the 45 minute mark I can feel it taking effect and I can think about getting up and getting dressed. (There's a window here, if I wait for another 30 minutes I get drowsy again and will fall back asleep)

    When I'm downstairs I have to take another 5 mg of hydrocortisone, this is my 9 o'clock dose. Another at 12 o'clock. Another 2,5 mg at 3 o'clock and the last one at 6 o'clock. I can do without the last two if I want to because my energy level picks up after 4 o'clock and I'm possitively buzzing at 8 o'clock at night. At 9 o'clock I get sleepy.

    Yes, I get a stuffy nose during the night and also a soar throat. I take a immune-system-relaxer for the nose right before bed and sometimes during the night. In the morning I have to thoroughly clean my nose or it will remain a body burden.
    I never had much phlegm and even less so since stopping milk and yoghurt.

    My take on it is that my busted adrenals miss out on the cortisol peak that occurs right before a person wakes up. Low cortisol also means the immune system can do her diva-flouncing which causes the stuffed nose. (I'm sensitive to dust).

    Without hydrocortison pills I have found it easier to get up if I:
    1. resolve to stay in bed for at least 30 minutes after opening my eyes
    2. desire to do nothing more than to raise my head (do it and wait if it clears your head a bit. It does mine. Don't think about anything else, especially not about getting up, getting dressed or about the things you have to do today)
    3. keep laying there (put head back down) and stretch limbs, as if you were a lazy cat or dog. (this clears the accumulated waste in the body, via the lymfe system). Relax and remain in bed for a while longer. Yawn, you lazy toasty cat/dog.
    4. drink the salted water I put at my bedstand the night before. (I have to cover my glass because of cats)
    5. have the clothes nearby that I'm going to wear. Outfit already chosen. Or, more probable, the same I wore yesterday.
    6. I have "free time" until 2 o'clock in the afternoon. I don't desire or expect to do anything useful before that. I do do things before that but it's all bonus.
     
  10. ryan31337

    ryan31337 Senior Member

    Messages:
    444
    Likes:
    986
    South East, England
    Hi Omri,

    I wanted to chime in and say that I have experienced the same thing. Whether its down to sleep cycles, cortisol levels etc. I can only speculate...

    I also suffered for years with morning phlegm, the result of a postnasal drip. Perhaps a bit TMI but I could actually gauge my current state by the colour/consistency of it. Clear and runny, normal day. Thicker and yellowing, uh oh, PEM and/or immune flare up ahoy. Red with blood when the sh*t really hit the fan.

    Since changing my diet (no dairy, no gluten) it's gone 99% of the time and I only get it with immune flare-ups or severe PEM. Perhaps worth a try?
     
  11. pogoman

    pogoman Senior Member

    Messages:
    186
    Likes:
    169
    I've been pretty much the same as others for the past few years, at the worst period of it I would have to pop a prescription pain pill at wakeup and lay down for an hour while it kicked in.
    Now after a year with methylation and mito supplements I have morning muscle stiffness and minor pain, takes me an hour or so before I am moving comfortably.
    Hard activity and hot weather worsen it, sometimes I would have to sleep an extra hour or two to be able to function.
     
  12. Pinkheaven

    Pinkheaven

    Messages:
    26
    Likes:
    46
    ireland
    I am the same way.I feel worse when i wake up and the pain is worse in the evening.I also get lesser amount of pain during the day but i get very tired when i wake up until the nighttime when i get twired.If i stay in bed most of the day on my pc,i feel alright but when i overdo it i feel terrible.I find if i get 9-10 hours sleep a night i feel better than sleeping 5-7 hours.
     
  13. soxfan

    soxfan Senior Member

    Messages:
    875
    Likes:
    467
    North Carolina
    I feel worse when I have had a decent nights sleep. It seems the better I sleep the next day tends to be awful. When I have nights where I will wake at one or two and lay there for 2 to 3 hours before falling back asleep I seem to have a better day.

    I still feel zombie like but for some reason I am able to function better feeling like that than if I just wake up feeling totally unrefreshed. I have recently had 3 nights in a week of laying awake and was able to still function better. I still feel awful,and by three in the afternoon am basically done.

    When I seem to sleep in blocks of 4 or more hours without waking I feel like cr$$.

    No matter what the night is like I am awake and out of bed by seven thirty at latest because that is when I wake up and just laying there does me no good..in fact my body starts to feel wired and anxious if I do that.
     
    ukxmrv likes this.
  14. gregh286

    gregh286 Senior Member

    Messages:
    591
    Likes:
    817
    Londonderry, Northern Ireland.
    hi @soxfan
    I am exactly the same....i have been on stag (bachelor) weekends and getting 2-3 hours sleep each night....faired much better than the rest of the guys....and I am the one with CFS.
    Think we are so used to be totally mangled all the time.....so any upswing in energy you're reborn
    next day albeit lack of sleep tired,,,my body has more "on tap" energy. legs less heavy etc.
    Same goes if I lose a nights sleep in overnight flying. Next day,,,feel tired but "normal"
    My best configuration now seems to be LDN at 3am, as I think its blocking some immune reaction in hours 5-8 of sleep.
    Also,,,,I take 300mg Photophosylserine daily.
    This is a huge pattern in CFS and greatly overlooked.
     
    soxfan likes this.
  15. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    Have you seen a sleep specialist or had a sleep study to see if there's something treatable going on? It sure sounds like a problem with sleep architecture.

    The way I see it, any partial relief we can get by treating anything treatable is an worthwhile improvement. All the little bits can add up. :)
     
    soxfan likes this.
  16. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,205
    Likes:
    6,624
    USA
    @ukxmrv -I want to say how sorry I am that you may vomit in the am. I hate that...that's awful. I have vomiting not that anyone loves it.

    I feel this way. I feel like I have been poisoned in the am. Like someone came in and gave me a shot in the morning before I wake up to make me feel worse. It HAS to have something to do with adrenals and yes, lactic acid. Why am I so stiff in the AM. I have to take a bath to get moving as I am so stiff and in so much pain.

    But the fatigue...I feel dead. It's not until I get up and get moving that my adrenals kick in and actually do something. I feel awful in the AM and by night, I am better. Not great but better.

    I don't get it and it has not always been like this. IT is like this for me in the past 6 years. But for me, it feels like being poisoned. I just feel so sick, exhausted, drugged and anxious in the AM

    My cortisol is so low in the AM and at night, it's alive but not great. It sucks.

    I can't take hydrocortisone, but I have to take prenisone because of pain and sjogrens and adrenal exhaustion, which I believe is from being sick for two decades and now pain which causes the adrenals to be really messed up.

    When I wake up in the AM, I feel dead...no motivation, desire, nothing.
     
  17. JAH

    JAH Senior Member

    Messages:
    456
    Likes:
    505
    San Jose
    I hate waking up -- I feel the sickness (or pain) gradually seep into me as I gain consciousness.

    Can't move for the first half hour to 45 minutes after waking. Even after I had a sleep study, I made them let me lie there for about a half hour. Too dizzy to sit up right away and let them take all of the wires off me.

    Been this way since I got sick as well. Always feel better as the day wears on...JAH
     
    redrachel76 likes this.
  18. soxfan

    soxfan Senior Member

    Messages:
    875
    Likes:
    467
    North Carolina
    @SOC I have had two sleep studies done. Unfortunately I didn't sleep in long enough blocks for them to really figure out what was going on. They could tell I didn't have sleep apnea or restless leg syndrome.

    I have tried tons of sleep meds but I am so sensitive I can't take enough to help. I either don't fall asleep or I wake up hungover and zombified the next day. I have had unrefreshing sleep for 11 year except for the time I was in remission.
     
  19. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,322
    Likes:
    4,357
    London
    Thanks for the kind words. Appreciate the reply.

    Sorry to hear you have the vomiting as well on top of the rest.

    I didn't feel any stiffness and pain in the morning until I had a road traffic accident. It wasn't a normal part of my morning ME symptoms and varies now.

    A bath makes me much worse in the morning rather than better which I am guessing is my low BP and POTS. "Getting going" as in moving makes me much worse as well and amplifies everything. I am more prone to faint or throw up or fall over then.

    The best thing for me to do is sit or lie until it passes. If I push myself in the morning, I get no where and then I am less likely to function better in the afternoon or evening.

    I do have my motivation, emotions, desires etc though in the morning as normal. Sorry to hear that this is lost for you plus more

    My brain though is unable to think through simple problems, idea or plans. I am "myself" and not unhappy but simply unable to function.

    Different symptoms but both REALLY bad ways to start the day.
     
    Last edited: Oct 13, 2015
  20. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    How annoying that they could clearly see something was wrong (you don't sleep in long enough blocks), but they didn't give you treatments to help. :rolleyes: What's the point of going to these doctors and getting tests if they're going to ignore abnormalities and give you no treatment? Oh yeah, the point is they get paid. Sheesh.
     
    Beyond and soxfan like this.

See more popular forum discussions.

Share This Page