Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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being active cause insomnia?!

Discussion in 'General ME/CFS Discussion' started by notmyself, Sep 11, 2017.

  1. notmyself

    notmyself Senior Member

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    I was ok for almost a month now but i think i'm relapsing again becuase i couldn't sleep more than 3 hours a night in the last few nights , i've been on this cycle for almost the entire time of my illness ( close to a year)...After every period of feeling better my sleep gradually get worse ,i fall asleep like a normal person,wake up after 3 hours completelly awake and unable to sleep..

    The only remedy to be able to sleep again is to stay all day in bed and do nothing .if i do that for two days i will start sleeping 12 hours a night..I don't wnat to do this,cause resting that much isn't really good for me,i get very depressed,my muscle ache more than when active,pots is much worse cause i spend to much time on the horizontal...what can be done for this sleep,is it adrenal related?.i was about to belive that this nightmare will be over, silly stupid me i guess...
     
  2. Joh

    Joh Inactivist

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    Hi @notmyself,

    I mean this in a nice and caring way. I read most of your posts during the several months since you started out here. You reported impressive athletic achievements, went to the gym five times a week, were able to run 5, 10, 20 km, said you are able to achieve the best times ever, reported a remission twice and several times that you don't have PEM. In your latest post you write (again) that activity makes you feel better.

    ME/CFS is not treatable at the moment so I think having another condition is definitely preferable. So this is not supposed to be mean, but meant to be helpful. It's not even allowed on this website to question if someone has ME. But I think in your case it would really make sense to keep looking for other conditions. It's true that there is a broad range of severity levels, but even mild ME/CFS requires that your activity is cut by at least 50%. Loosing 50% of your former ability is a huge life altering change and nothing is as it was. Managing everyday life becomes a big challenge, even when you're "mild".

    Also, despite being able to be so extremely active and reporting several "remissions" in the course of only a few months and concluding several times that you definitely don't have ME, you told us about suicide plans because of having ME at least twice (I had to stop reading at some point). This was upsetting for members, also that you were telling us you were going on a 20 km run without mentioning you were well trained. People went crazy with their concern for you. Most of your posts are in a "suicidal thoughts thread".
    When I read your posts I'm not really sure, when, between all those remissions, you had the time to suffer from ME. I feel like I shouldn't write this and that I'm going too far without knowing you. Just as an outside perspective, you mentioned severe anxiety as the beginning of the symptoms, maybe trying some support for mental wellbeing might also be helpful for feeling better.

     
    Last edited: Sep 11, 2017
  3. Valentijn

    Valentijn Senior Member

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    @notmyself - Too much activity can cause our heart rate to rise for many hours afterward. It's important to pace to avoid that, and a heart rate monitor might help both with the pacing and with determining if elevated heart rate is the reason you can't sleep. I find it impossible to drift off if my heart rate is 95 or higher when lying down.
     
  4. Joh

    Joh Inactivist

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    The canadian consensus criteria mention that you can be too exhausted to sleep. I certainly have that. If I was too active (like taking a shower) sleep is worse than normal. This is another thing that is counterintuitive with ME: the more activity, the worse the sleep is. Should be the other way around. But as I mentioned, not sure this is helpful in your case, when activity makes you feel better.
     
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  5. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I would also echo concerns that the pattern of exercise and high stamina sports doesn't seem to fit with ME from your previous comments.

    A couple of thoughts occur with regards to sleep.

    I agree with @Valentijn if your heart rate is high it is difficult to drift off. This can be high for a number of reasons (general anxiety, exercise or other strenuous activity before bed, infection or other inflammation responses ). I drift off when my heart rate is under 70bpm and can't sleep when it's in the 80's. This will be unique for you though (my base rate is lowish)

    Regards waking up after falling asleep., it's possible that magnesium may help you if you suffer from this regularly. Many people report success with this. There are lots of threads on different ways to use magnesium. Topical spray might be a thing to try first.
     
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  6. notmyself

    notmyself Senior Member

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    hi, unfortunatelly i am not able anymore to do those things...the 5 time gym a day was in the begining..and was forced,it was against my body...i'm done running for more than 6 weeks now, the running was forced aswell,.i didin't have pem in the begining,but feel bad anyway,cause is messing up my sleep big time,and that is causing obvious fatigue and other symptoms..I don't know why i was able to run , all i know is i definatelly don't have a right recovery after exercise...

    i have pots,noise sensitivity,tinitus,daily muscle twitchings,insomnia after exortion( recently meaning just walking and standing up more time than usual),frequent stomach upsets,back and neck pain,stiffness,weak muscle...i have all this regardless if i run/ exercise or not..i could probably go now if i forced myself ,even without sleep and run a 5 k,i am jsut able to that...i don't think that exclude me from having ME..i might be affected more neurological than cardio vascular wise..i just don't know.. PEm is for me the inability to sleep after exortion, wich exacerbate everything,so i have pem after all...

    i indeed cycle beetween feeling better and bad..but never fully symptoms free...The recovery story was followed by a relapse unfortunatelly,just like it happen all the time..In some people is common this fluactuating of symptoms..

    I tested for everything under the sun, i've spend all my saving on useless stupid doctors wich just take my money to give me vit b and advice me to see a shrink,wich i did..just to be told that i don't look depressed or anxios..

    Do you think posting here is my idea of having fun?,i am completely lost, i don't know what's wrong with my body..some things don't look like ME ,but many others do..at the moment the biggest probability is that i have ME..or some sort of cancer..i just cannot see other explination...
     
  7. notmyself

    notmyself Senior Member

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    i just said that the more activity i do the worse is the sleep..that was the post in the begining about...activity indeed make some symptoms better, like pain , pots and energy( wich i think is adrenaline related)...but it worsen others like sleep,muscle twitching,stomach upsets etc..
     
  8. notmyself

    notmyself Senior Member

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    i fall asleep normally..i am bothered by tinnitus but in 20 min i usaully fall asleep..the problem is i wake up after around 3 hours fully alert and unable to fall asleep again..
     
  9. Joh

    Joh Inactivist

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    Just wanted to write my concerns once, after I thought about writing something for months. Didn't mean to imply you're not unwell, just that ME/CFS might lead in the wrong direction. Of course it's your decision, I don't know your daily struggles and wish you all the best.
     
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  10. lnester7

    lnester7 Seven

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    Activity raises my Citokines level for inflammation and the signaling in the brain does not let me sleep. If I take advil, I can sleep (I do not do this as a routine, did it to test) By the way this was tested for me, so I am sure is what happens in my case (my brain noise level also when I lay down will be worst).

    I control inflammation when I exercise and that will do the trick (I do more green foods and avoid other inflammatory foods, I use baking soda, other supplements...). I stop all activity at 7pm or so.
     
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  11. notmyself

    notmyself Senior Member

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    can you recommend me some suplements?
     
  12. lnester7

    lnester7 Seven

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    We are not supposed to. But I can share what I do. I tried a lot of things plp recommended here and to be honest was trial and error.
    1) I used sleep medication to stay sleep. I do not go to stage 4 sleep no matter what I do ( I also have sleep apnea). So I take trazadone to stay sleep.
    2) for brain inflammation ( i get burning in brain and spine and brain noise really bad, like Titunis in brain) I do GMC ALC with ALA (mornings and midday) CoQ10 I do up to 800mg a day ( morning and mid day).
    Baking soda 1/4 teaspoon ( as needed) if I get latic acid pain in muscles ( this used to be very bad for me).
    L-glutamine w coffee every morning ( this is taking care of my latic acid pain).
    I do green smoothies and green food.
     
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