Strange CFS and sleep observation

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Hi All

I've been diagnosed with CFS along with Fibromyalgia for about 2 years now, and my conditions have meant that I am pretty much housebound. My conditions also seem to affect my digestive system quite badly, giving me what feels like constant IBS-C symptoms, bloating, burping, stomach gurgling and churning, nausea and lightheadedness, although the severity of these symptoms are usually mild to moderate.

I have noticed something very strange concerning my sleep patterns and how they influence my general health the following day. The night before last I must have had a good eight hours straight sleep, however I felt absolutely awful throughout yesterday. Last night I must have only had five and a half hours sleep maximum, yet I feel so much better, more refreshed and alert, not so fuzzy, wobbly and ill. This isn't the first time I've noticed it either, everytime I sleep for 7 hours or more a night, I always seem to feel really ill the next morning, yet if I have a shorter amount of sleep during the night and maybe have the odd power nap or two during the day, my body seems to react much better.

I just thought it very strange that this should be the case, and thought I'd let you all know. I'd be really interested to know if any of you fellow CFS sufferers experience anything similar.

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  • Posted

    While I haven't experienced exactly what you describe, I do notice that the point in my sleep cycle that I wake up makes a huge difference to how I feel. I stopped setting an alarm because I consistently felt disgusting when woken up "unnaturally" but feel better if I let my body wake up when it wants to. Being woken up in the middle of what I assume must be REM sleep is awful. There are chemical changes that go on in our bodies during sleep and it kind of feels like those changes never got a chance to complete properly. Maybe a nap is enough to let them do so? I don't know, just theorizing...

    One morning recently I woke up unusually early feeling ready to start the day, had a shower and everything, then started to feel extremely ill (on the verge of passing out, shivering, nauseous) so I went back to bed and slept for another 2 hours...felt fine after that!

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    • Posted

      Thank you for your comments.

      It is becomming even more apparent that sleep plays an important part in how CFS sufferers will feel. I monitor my sleep pattern with a well known fitness watch. I don't know how accurate they are, but I generally feel better when I have between 30 - 45 minutes deep sleep, and no more than 6 hours total. When my deep sleep amount goes above 1 hour, and total is over 7.5 hours, that is when my diagnosis has the greatest negative influence on me and makes me feel worse, I even get to the point that I will just fall asleep on the sofa without any warning, yet this does not happen when I get less sleep.

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    • Posted

      Youre right! A nap does wonders for my illness. I almost feel normal even if its a 20 sec nap! Weird!! There is definetely a chemical thing going on. But the sad thing for me is that this dysautonomia thing , i think, is preventing me from taking a nap at all! So frustrating. Maybe the anxiety from it?? See my link below. It actually came thru!!!
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  • Posted

    OMG! I'm hoping I may have had a Eureka moment, that I wanted to share with you all.

    Not sure if I've mentioned this before in this discussion but my diet is extremely limited due to what I believe are many food intolerances. For instance, my diet contains minimal fat, and as such I was worried that I would keep loosing weight (I dropped from 14 stone (89kgs) to 10 stone (63kgs) during the time my problems started. To combat this I found a couple of chocolate manufacturers whos products I thought I could tolerate, so I would make a point of eating a small amount each day, so as not to loose weight, and it seemed to work, I have been a steady 10 1/2 stone (67kgs) for the last couple of years.

    Yesterday I woke up feeling really bad, with my digestive system being particularly troublesome, I felt so bad that I didn't even eat my daily dose of chocolate. I woke up this morning, albeit very early, and I was staggered as to how much better my digestive system felt. Don't get me wrong, it's still not 100% and my Fibromyalgia and CFS symptoms are still apparent, but as far as my digestive system goes I haven't felt this close to 100% for many, many months.

    There are two variables here that are significant, now it could be because I had no more than 6 hours sleep last night, and the reason why I started this discussion, or it's the fact that I eliminated chocolate yesterday. However, even though having less sleep made me feel generally better, my digestive system would still play up quite a lot, but today it feels totally different, I don't look and feel as bloated, not so much gurgling and churning going on and I haven't felt one associated pain yet so far today.

    It's early days I know, but I do feel a totally different person. I'll keep it out of my diet for a few more days still, just to be sure I don't have a flare up, but fingers crossed I might have found a way to at least ease some of my symptoms, only problem now would be how to keep weight on without chocolate, plus I'll miss it if I have to give it up!

    Just thought I'd share that with you all.

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    • Posted

      That's really good news Paul and if the chocolate isn't helping and is instead hindering then eliminating it may be the solution!

      In regards missing it, early days yet and to start with you might crave it (i craved jam tarts when i had to give up wheat, don't any more but there are wheat alternatives now)

      Good luck with it

      Beverley

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    • Posted

      Good news! I cant eat chocolate, caffeine or drink alcohol becuz if my irritable bowel. I would a little bit every now and then but now it affects my heart too so ive thrown in the towel and thats ok if it comes to my life. I still have vanilla breyers (no corn syrup) ice cream for a every now and then treat. You could eat avacados with garlic salt on them! Delicious fat and nutritious. Bacon and other meats are fatty. Eggs. ? Good luck!
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    • Posted

      That's wonderful! May I ask how they do these tests? I'm been using soy milk for years now instead of regular milk. I can't handle coffee, though I love it. But I would miss the chocolate. 

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  • Posted

    Hello All.

    Just thought I'd give you all an update on my recent findings.

    I took one of you kind peeps advice and had a food intolerance test done, in fact I've done two, one non specific test which just tells you whether you have intolerances or not, and another that tests for 600 types of intolerances, both food, non foods and heavy metals. I haven't had the non specific results back yet, but I'm only using this as a confirmation test against the other specific test, if the non specific test comes back positive then I can pretty much trust the other specific test results, which I already have had back and I was rather surprised by the results. It turns out I have food intolerances to the following items:

    Broad beans, cheese, cornflakes (but not corn or maize), E351 (Potassium malate which is found in ice cream and fried products), E442 (Ammonium phosphatides which is found in cocoa and chocolate products), E903 (Carnauba wax which is found in chewing gum, confectionary, coffee, bakery products), fig, gooseberries, herring, milk, millet, quince, rye, sheep's milk, shrimp, spinach and swede.

    I also have intolerances to the following non food items and metals:

    Duck feathers, Glaskraut plant, lycra, chromium, lead, nickel, tin and zinc.

    They also told me that my levels of the following nutrients are 15% or less:

    Calcium, chromium, iodine, lecithin, manganese and vitamin B1.

    I was intrigued by these results, and although I am on a very limited diet there are 3 foods that I regularly consume linked to that list, those being milk, coffee and chocolate. I got these results 4 days ago and for the past 3 days have stopped my intake of these foods, and I already feel better, no where near 100% but a definite improvement. I don't know if its the elimination of these foods or whether I've gone into remission from my conditions, but something definitely feels different about me. Put it this way, a week ago I felt so ill I could hardly get out of my dressing gown and off the sofa, however yesterday I was up and dressed pretty early, was pottering about the house and garden, albeit gently not exerting myself at all, and I even felt well enough to try out my sisters brand spanking new car, I haven't driven in months. And again this morning I don't feel too bad at all, still a bit fuzzy headed and my stomach isn't quite right, few minor aches and pains here and there, but I'm definitely better than I have been in the past.

    Could this have been the cause of my problems all along? Only time will tell of course, but surely this is looking promising so far! Only problem now is that I have to find some dairy free alternatives to milk that doesn't make my morning porridge taste like liquidised cardboard, plus try and live a life without chocolate !! eeksad

    Many thanks again to you all for your help and advice and I will keep you posted!

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    • Posted

      Fantastic news Paul!

      There's a milk substitute called mylk that is supposed to be more like milk and Sainsbury's do a range of dairy free cheeses that are good.

      I still eat high cocoa content dark chocolate so can't offer you an alternate to that.

      I'm really glad you've got some answers !!

      Beverley

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    • Posted

      Hi Paul, I'm so glad you have taken tests, which is hopefully a breakthrough for you. Iv recommended intolerance tests several times on the site due to my own findings and I feel so strongly the link between foods and the extreme symptoms people can get when they are allergic or intolerant because they can match M.E and CFS symptoms. It's the first time somebody has given feedback after doing tests so it's great to learn about a potentially positive result. Although for you it must be pretty overwhelming the amount of foods you are intolerant to and a bit of a journey to follow investigating etc.

      Just a pointer for you to consider.... the tests normally tell you what you are intolerant to, but with your symptoms, it could be more like an allergy, there's obviously a difference. So, some foods on that list may not affect you too much due to maybe being an intolerance, but there maybe one or more that you are actually allergic to, which give you the autoimmune responses etc. For example my test came back that I'm intolerant to cows milk, vanilla, coconut milk, soya however from my own findings, I'm actually allergic to cows milk and only intolerant to vanilla. If I consume a tiny bit of cows milk I'm physically and mentally out of action for days, vanilla gives me a short term rough feeling. 

      Another thing, sorry I could talk about this all day. It's daunting what you feel you have to give up but its not all doom and gloom once you start looking the alternatives out there, and hopefully if you start feeling a bit better you can cook/make treats yourself if that are just as nice as bought products.

      I'd really love to hear how you get on further down the line and good luck to you. 

      Best Wishes

      Sophie

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