In past years I have suffered occasionally from what I called "sleeping sickness", where I just was sleepy all the time and lack of energy.It only lasted a few days then went as fast as it came. 2014 was a very difficult year for my person life and in March of this year I had this illness and it lasted two full weeks. I have just suffered from it again, this time over three weeks. I am completly debilitated, sleepy, no energy, barely able to function other than small necessary chores, then back to bed. I have been physically checked by the Doctor and had blood screening and everything is normal. I am on Citalopram for depression 20mgs and they have now upped this to 30mgs. They have no idea what this illness is, does anyone else have this? I have no pain or other symptoms.

12 Replies

  • The NHS list the top ten sleepy as nhs.uk/Livewell/tiredness-a...


    The Institute Of Medicine recently defined the basic symptoms as:

    1. A substantial reduction or impairment in the ability to engage in

    pre-illness levels of occupational, educational, social, or personal

    activities, that persists for more than 6 months and is accompanied

    by fatigue, which is often profound, is of new or definite onset (not

    lifelong), is not the result of ongoing excessive exertion, and is not

    substantially alleviated by rest, and

    2. Post-exertional malaise, and

    3. Unrefreshing sleep

    At least one of the two following manifestations is also required:

    1. Cognitive impairment or

    2. Orthostatic intolerance

  • Had all kinds of tests showing nothing this diagnosis was left after excluding the believed in ones with known treatments.

  • What diagnosis did they make?

  • Doctor called it chronic fatigue syndrome and it can be up and down as your describing with days / weeks in bed then up again afraid of a down. Living with this doubt on tomorrow is one of the hardest things for me with the effect on friends and family I want to be with them doing things my body is unsure.

  • Empathize with fatigue and doctors not knowing whats happening hang in there with others like us.

  • Thanks,It is so debilitating that I worry when it is going to strike again.

  • Counselling gave me ways of telling between crushing fatigue and the lethargy of depression. With fatigue the desire for activity remains when depression comes on interest in activity fades away even if the energy has not. A rule of thumb guide on which help I need at the time.

  • Thanks for that, it is interesting to note the difference. It is definately the fatigue I struggle with, the body is willing but the mind can't cope. and just as you say with depression you don't want to do anything at all but don't have the same kind of fatigue, when it hits me I feel like my head is filled with glue.

  • Anxiety finding a head full of glue a normal reaction although stress is something that works against any improvement.

    Pacing is doing a little resting then doing a little more. When the mind wants everything done that could have been if the body hadn't collapsed exhausted into bed. Accepting that boom and bust with energy doesn't help is something I still find difficult I want more than can be often willing but crushed by fatigue into stopping.

  • Thanks to everyone for their info and support, I thought this was only something that happened to me as no one else had ever heard of it, and the Drs have no clue!

  • Thank you anna45

  • I've been strugling to differentiate between ME symptoms (only mild by comparison to many here) and long-term depression (PPD) for several years now. Recently after raising it (again) with my GP he tried me on a VERY short course of Prednisone as a 'diagnostic prescription'.

    I can honestly say that the results of that short course convinced me that my situation was being caused by purely biological factors. IMMEDIATE reversal of all the emotional, cognitive and physical malaise I have been experiencing over the past three years. Which is ironic - as depression is a common side-effect of the drug.

    Unfortunately, one cannot stay on Prednisone indefinitely and I have been searching for a suitable substitute since slipping back into my 'dark hole' again.

    Recently discovered a TED talk that led me to try 2000mg/day doses of Omega 3 fish oils and highest level Tumeric that I can source.

    To my delight a combination of the two (fish during the day and turmeric for overnight) have had a remarkable effect. Admittedly not the complete reversal of symptoms I experienced on the Pred, but have restored functioning to about 90%.

    I'm hoping the remaining 10% can be restored by returning gradually to regular exercise and allowing myself to experience positive emotions again ( I had learned to suppress any to avoid emotional drain ).

    Given the known properties of both those supplements as anti-nflammatories it seems to confirm the original theory of neuro inflammation. I find it very helpful too understand the fundamental mechanisms of the disease (I hate the word Syndrome!) as it allows me to make informed decisions about what to try.

    My apologies for the typos in this post - the form field seems to resist my efforts to go back and correct my typing errors afterwards.

    Good luck on your journey - I hope this is of some help.

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