Not sure I belong?

  • I'm not sure I belong here because I don't have a diagnosis. In the past 9 months I have had soooo many tests, scans, biopsies, etc. but still no closer to finding the reason for this overwhelming heaviness and exhaustion that gets so bad that it makes me feel queasy and really unwell. I can't think straight, don't sleep well and it's interfering with my job as a teacher. I am making mistakes, forgetting kids names, and I have lost all patience with bad behaviour. I literally drag myself through the school day. Weekends are for recovering. I feel like a hypochondriac but according to all the tests there is nothing wrong with me.

  • @artist55 Welcome here! I'd say you belong if you feel comfortable here. You will certainly have plenty in common with all the rest of us here.
    It sounds like life is dreadfully hard at the moment. I bet one of the moderators will come along soon with some sensible advice for diagnosis.
    I was a teacher when I developed ME/CFS so I can sympathise with how you are dragging yourself to work each day.
    Sending best wishes for a restful Sunday and hooray for a long weekend.

  • Welcome, artist55, pleased to meet you!

  • Community Moderator

    Welcome @artist55 and you're very welcome here, but we're sorry that you're so unwell - in terms of diagnosis for ME/CFS, Emerge's page - - is a good place to start, and you could try their telehealth nurse service to see if they can help provide advice on how to get a diagnosis. Trust your judgement when it comes to your body - you know it better than anyone else.

  • @Dot Thank you so much for being so kind - especially to someone who sounds so grumpy:) I do apologise! I stumbled on this site when trying to search for ways to overcome severe fatigue, and so much of what I read here sounds familiar. It's a relief to know that other people do understand.

  • @artist55 Hello, pleased to meet you.

  • @crashdummy Thank you so much 😊

  • @Daffy_Dave Much appreciated. I look forward to reading anything I can!

  • @donnamarie Thank you 😊

  • @artist55 based on the symptoms you describe I think you definitely belong. There can be quite a barrier to diagnosis and its by no means a requirement for participation in this community. Welcome to the forum πŸ™‚

  • @artist55 Ha, you didn't sound grumpy. Maybe a bit frustrated, but what else can you be? Time you had a LOT of kindness. Good luck with your next steps to deal with your illness.
    I'm hoping to see you continue on this site (when you have some enough energy ofcourse).

  • Community Moderator

    Hi @artist55 very glad you've joined us and hope you're feeling a little more comfortable here. I'm personally grateful to all who join because I find discovering the sameness of our experiences really helps a lot but also the uniqueness of how it affects us helps normalise just how complex it all is.

  • @artist55 said in Not sure I belong?:

    I feel like a hypochondriac but according to all the tests there is nothing wrong with me.

    This line jumped out at me.

    A common dilemma with ME suffers (probably FM as well) is, all blood tests come back 'normal' with a few that are 'slightly high' or 'slightly low'... but 'not a real concern at the moment, however we'll keep monitoring them over time'.

    From medical research presentations/discussions (YouTube) it was suggested the tests conducted are probably not targeted to CFS/ME/FM suffers.

    I have what seems like reams of blood test result copies from over the years basically containing similar. Normal... slightly high/low levels... nothing found.

  • @gretch Thank you so much for being so welcoming! I will continue to look for answers and in the meantime I am very grateful to find a community of people who understand. I have also learned a lot about me/cfs and all the different ways it manifests itself.

  • @Long-Haul-Mono I feel your frustration and a sense of helplessness and confusion. It seems crazy that tests can keep coming back clear when something is definitely wrong! Don’t give up though - in the meantime we can follow the helpful advice on managing fatigue and make lifestyle changes. I wish you all the best!

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