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PEM symptoms at the exact moment I don't need them - BEDTIME... any ideas?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Bansaw, Jul 3, 2015.

  1. Bansaw

    Bansaw Senior Member

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    I used to do 15 mins aerobic exercise and found that it was giving me muscle aches, mental tiredness, heart palpitations etc.
    Then I switched to stretching and doing light weight training and that seemed better.
    Now I have added in a little walking (I did 30 mins walk the other day).

    When I do walk I find that I feel OK, but at bedtime I feel too alert to sleep. This morning I didn't drop off to sleep until 2am. I also had a kind of congestion/heaviness in my chest (which seems only to manifest itself at bedtime). The rest of the day I don't feel that chest symptom, and I think my body reacted reasonably well, it just when I try and get to sleep.

    Any ideas on how to get around this so I can sleep well?
     
  2. Scarecrow

    Scarecrow Annie Gsampel

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    This may not be what you want to hear but stop doing more than your body can handle. I know, it's easier said than done, regardless of your level of ability.

    Is your alertness of the wired but tired variety?

    I like to walk, too, in the absence of not being able to do anything more strenuous, but even walking can be too much. Do you ever use a heart rate monitor? I couldn't recommend them highly enough for monitoring what effect activity has on your heart rate.

    Try to get a feel for your true resting heart rate, measured first thing in the morning before you get up, over the course of several days. Suspend your walks for the time being. If you are overdoing things just now, you may notice that your resting heart rate will fall. If it does let it plateau before starting up your walks. When you do, if your resting heart rate increases again, it may be a sign that the amount of activity you're trying to incorporate is too much.

    Measure your heart rate while you are walking. Do you notice any time of day when walking is more difficult? For me it was the morning and my heart rate monitor provided evidence. My heart rate was regulary 10 - 15 bpm higher during a morning walk, so I stopped walking any significant distance at that time of day.
     
  3. Scarecrow

    Scarecrow Annie Gsampel

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    Also, instead of taking one long 30 minute walk, you may get more benefit from three 10 minute walks.
     
  4. Scarecrow

    Scarecrow Annie Gsampel

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    By the way, 30 minutes is not really a little walking. OK, so it isn't like walking up a mountain but it's a lot for someone with ME.
     
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  5. Bansaw

    Bansaw Senior Member

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    I do two 10-minute walks during the workday since I have an office job and that seems to be helping.
    If I do an aerobic workout the symptoms of PEM are really there for a few days, but walking just produces this one symptom: alertness at bedtime! In the summer I was in Korea and you have to walk everywhere. The first week I was huffing and puffing but after three weeks I got more stamina.
    I'll take it easy and perhaps "stroll" for 35 mins rather than walk briskly for 30!
    I was just wondering if I could take a supp at bedtime to get me off to sleep.
     
  6. AaroninOregon

    AaroninOregon noob

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    I agree with @Scarecrow that 30 minutes is alot of walking.

    When I first got ill, through last summer, I would do daily walks of 1 mile, which was sufficient to keep me in shape. Last September, I was feeling good and thought I had recovered so I went and did some hiking in the mountains...

    At some point your body is going to put a stop to constantly being pushed (assuming you have ME/CFS).
     
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  7. AaroninOregon

    AaroninOregon noob

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    @Bansaw what time of day are you exercising?
     
  8. Bansaw

    Bansaw Senior Member

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    Walking home after work at 5pm.
     
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  9. AaroninOregon

    AaroninOregon noob

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    Hmmmm...I wouldn't think that would keep you up so late unless you are getting some abnormally long lasting hormone increases associated with exercise...just a thought.

    Have you tried switching to a moring walk instead?
     
  10. SOC

    SOC

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    @Bansaw, that doesn't sound like PEM. Perhaps it is exercise intolerance as the result of orthostatic intolerance (OI) or one of a number of other conditions. It might be that you are pushing your body too hard at the end of the workday by walking home, causing an adrenaline spike which carries through the evening and makes it hard to sleep. You could try walking earlier in the day and skipping the end-of-day walk to see if it improves your ability to sleep.
     
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  11. whodathunkit

    whodathunkit Senior Member

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    @Bansaw, any problems with adrenal fatigue? Alertness at bedtime and notable fatigue after doing moderately stressful exercise like aerobics exercising can be two symptoms of this.

    I find a few mgs of glycine helps me sleep. As does taking an adrenal cortex supplement and phosphatidylserine (last two are specifically to address adrenal problems).
     
  12. ukxmrv

    ukxmrv Senior Member

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    Do you get the same symptoms if you lie down after your walk? What time do they set in I.e. Would the same thing happen at 6 , 7, 8, 9 o'clock?
     
  13. Bansaw

    Bansaw Senior Member

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    Just saw my doc today.. She knows Methylation and says my SNPs indicate a real problem I have with getting rid of Ammonia, and she says my PEM is pretty much down to that. So she's got me on some Ammonia Scavangers next week.
    She also wants me to try L-Argenine in the morning, and L-Lysine in the evening. Something to do with Nitrogen or something like that, can't remember, have to look at my notes later.
     
  14. whodathunkit

    whodathunkit Senior Member

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    @Bansaw, good for you finding a doc that understands methylation and sounds like she can help. Let us know how it goes with the ammonia reduction protocol. I think @ahmo has had success with reducing ammonia so maybe she can chime in, as well.

    I like arginine. I started using it a couple months ago to help build and keep muscle. It promotes beneficial nitric oxide production. NO increases blood flow and helps the immune system, among other things.

    Another thing you can do to help promote nitric oxide formation is Buteyko (sp?) breathing method. It's a little time-consuming but very interesting in its effects if you can manage to do it consistently every day for a couple weeks or more. I always forget about it (to mention it or to do it), but the times I have managed to practice it consistently for a while, I've noticed it's helped me sleep. Also helps other non-health-related things like singing. I can actually carry a tune when I've been practicing Buteyko, but need a bag (to "carry" the tune, get it? 'ar 'ar 'ar 'ar :D) otherwise.
     
  15. Bansaw

    Bansaw Senior Member

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    Thanks, I'm in agreement that breathing right can make a significant difference; I'll read up on Buteyko. I'm quite a shallow breather.
    I hope this Ammonia Scavanger protocol gives me some results (please God) because I have had some bad muscle aches over the past few months.
     
  16. butterfly7

    butterfly7

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    Hi can anyone please help me to understand this I read the first post and that is similar to what I experience, i used to be able to walk ,bike ride ,weights etc now im lucky to do a few stretches and stroll arounds my back yard ,its like my when heart rate rises even slightly i get that horrible feeling in the night like you wake up and so heavy in the chest allover and down the left side, im very sensitive to many things and live off 10 foods, anyway i just want to know if im crazy or not ,i dont get the sore throat thing but sleep is so crazy ,i pray and long for the good old days of sleep,im new to this about 6 mnths it started slowly but then at about 3 mths in i had a virus with the most painful sore throat ever,and that was it ,have improved slightly i think the shock and heaviness at first sent me into panic so trying to keep calm........
     
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  17. Bansaw

    Bansaw Senior Member

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    I feel the pain. I just visited my doc and she's just written a book on Methylation. She's making big steps in that area and she says my aches, pains and adreneline issues are down to my methylation cycle.
    Shes says my muscle pain etc are down to Ammonia being released in my body during exercise and not being excreted properly. She's prescribed me an Ammonia Scavanger.
    She also says I need to take L-Lysine and L-Argenine to deal with my nitrogen issues' as well as a proper B12 supp.
    Anyway, I don't know if you have looked into your Methylation SNPs or not but it might be a place to start.
    I feel personally like I could do 30 mins of aerobic right now and get off the elliptical trainer afterwards and feel good. BUt then I know that 3 hrs later I'd be feeling crap with heart palps and aches all over for the next four days. I'm hoping that this Ammonia thing is the issue because she says it has helped a few of her patients.
     
  18. butterfly7

    butterfly7

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    im yet to get any proper help ,i hope that you work yours out...........
     
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  19. rahmama

    rahmama But you don't look sick...

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    For years I've had difficulty sleeping which I dealt with by reading myself to sleep. I am always wide awake at bedtime making lists of things I need to do. :(
    My usual sleeping pattern: a cycle of 'read myself to sleep, then doze, wake up, doze, wake up' until 1 or 2 a.m.
    Never really got more than 5-6 hours sleep. Finally I realized how much this sleep pattern was wrecking my health (no wonder I have chronic fatigue) and recently got serious about changing it.
    Thought I'd share some things I'm doing that are helping me.
    • I remembered reading that tart cherry juice helps with insomnia and found it really works. I enjoyed the taste even. A couple of small, like 4 oz., glasses after dinner.
    • I got a sleep mask I ordered from Amazon that I absolutely love! It's very comfortable and blocks out all light, even in the daytime. It has been a tremendous aid in helping me get to sleep and stay asleep all night.
    • I began taking a powdered magnesium to see if it helped with the leg pain I experience during PEM crashes and found it's helped immensely with my sleep too.
    • I became more aware of what I was doing that might affect my circadian rhythm and I try to not do any exercise in the evening, and begin turning down the lights early on.
    • I got an herbal sleeping supplement but found I haven't even needed it.
    Yeah! Loving my sleep!
    Hope this helps.
     
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