Just joined today!

Hi all, I have just joined today.

I have had Fibro for about 6 years and am struggling more and more to continue working and functioning.

I have been signed off work for 2 months as my fatigue is so bad that I fall asleep all the time, in the middle of my dinner, standing up, at work on the computer, I have woken up at the top of my stairs at home and I have no memory of getting there. I am waiting to have a sleep study completed from Neurology as they are trying to rule out that it is not some form of sleep disorder. I am wondering if this sounds more like ME.......and advice?

13 Replies

oldestnewest
  • Hi Janepain

    Welcome to the club. I was diagnosed in Feb this year but have been struggling on and off for about 5 years. I joined the sight around April I think and there is lots of advice and plenty of shoulders and ears available xx

    I too am struggling to stay in work. I was off at the beginning of the year for 5 weeks and went back against GP advice as I was due to start my final placement for a Degree I have been studying for 4 years and I don't want to give up.

    Back off now for a couple of weeks up to now. Pain and tiredness has taken over again.

    It sounds to me like you do have a very serious fatigue issue. I know how tired I get, could sleep at the drop of a hat and still be tired after sleeping 12 hours but I haven't yet fallen into my dinner or slept on the stairs.

    I have had the computer thing, constant grogginess and near misses when driving but nothing like you are describing.

    I hope they get to the bottom of it soon. Take care and look after yourself xx

  • Thank you for you kind message, yes the whole thing is a total nightmare.

    I will keep you posted though.

    Kind regards,

    Jane.

  • Welcome to the forum. Often fibro and fatigue especially fibro fog can go hand in hand. It could be that you have fibro and ME as quote afew forum members have both. Many like myself feel very tired throughout the day but as soon as our head hits the pillow we are wide awake.

    I must admit yours does sound very extreme and I sincerely hope that the sleep study shows more light on this troubling problem for you. Please let us know how you get on.x

  • Hi there,

    Thank you for your reply - I will of course keep you up to date.

    Sure you can imagine that falling asleep in front of a room full with 100 6th form students is not a pleasant situation to be in!!

    Kind regards,

    Jane x

  • I can imagine that must have been so embarrassing. I know my dear friend a fellow trainer fell asleep in front of her trainees as she was so exhausted as she had RA they all actually managed to laugh it off afterwards but she was mortified at the time.x

  • please check the m.e symptoms list on the hummingbird foundation for m.e website. it is free and has a lot off info about m.e. i sincerely hope you don't have this illness to cope with on top of f.m .although it is known to overlap.

  • Hi there

    Welcome 😊

    Has your GP mentioned the possibility that you may have Narcolepsy? It was the first thing that sprang to mind.

    Perhaps it is something you could look into?

    Hugs

    Lu xx

  • That's what I was thinking!

  • Hi Lu,

    The Neurologist has mentioned it - all hanging on what they find with the sleep study. I am not convinced though as i never fall asleep when I am driving. I live on my own but if my sister comes to stay and I have someone to converse with and have some form of interaction it tends to not happen.

    It seems to be when I am in a situation where my body and brain go into rest mode because there is no stimulant of any sort, with Narcolepsy it would happen all the time.

    Hope to get some sort of answers soon, thanks for the reply,

    Regards,

    Jane x

  • Hi Jane

    Good luck with the Sleep study. I do hope you get some answers so that you are able to move forwards.

    Very best wishes.

    Lu x

  • Hi Janepain69

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun!

    I have pasted you a link below to our parent site, Fibromyalgia Action UK and it is packed with loads of useful Fibro information:

    Fibromyalgia Action UK

    fmauk.org/

    I am rather worried about your comment of waking up at the top of the stairs, as anything could have happened, so I genuinely hope that you can get a diagnosis one way or the other soon. I have a sleep disorder which has left me with insomnia for over 30 years, and now I am told that when I do sleep that I also have sleep apnea. So as you can see sleep is a big issue with me!

    I am not a doctor so I am not really qualified to make a comparison over Fibro or ME, however, it could be that you have both? It would be worth discussing all of this in depth when you see your Neurologist?

    I want to genuinely and sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi Ken,

    Thank you for your kind words, I am due to see the Neurologist on the 16th so lets see what happens then. As you can imagine working with this horrid condition is not easy and trying to stay motivated gets harder and harder!

    Seeing my GP on the 10th for a check over so will mention ME and possibly CFS and get his thoughts on it.

    Hoping for a better day today!!!

    Regards,

    Jane.

  • Welcome along Jane pain hope we can shair a joke or two

You may also like...