Hello, do I belong?

  • Hi my name is Dave and I live in Sydney. I have been struggling with my health for two years now and was only recently diagnosed with CFS 4 months ago by a neurologist.

    I am 44 with a family and a business, up until 42 I was very fit and healthy. I was riding around 150-200k a week on a mountain bike, I was NSW state Downhill champion 7 years in a row. I am training the number 2 ranked female downhiller in Australia who also competes internationally. I have 3 kids and like most of you a very busy life.

    Well that was until 2 years ago. I started to notice brain fog, headaches and sometimes blurred vision. All my energy disappeared and I didn't even feel like taking my 4year old son to the park. I saw my local GP who sent me off for a number of blood tests and brain scans. Nothing came of them so he sent me to a Neurologist who did more in depth tests and scans, again there was nothing abnormal. He suggested it could be CFS and put me on a course of drugs saying that it could take a few months to a couple of years but I should get better. The drugs didn't help for a couple of months but then I had 5-6 weeks and felt like my old self. Until last week when all the symptoms came back and here I am sitting at my computer after a very confronting phone call with a nurse from Emerge.

    Do I have CFS, I don't know but the symptoms sure fit. I feel like my GP and the Neurologist don't understand ME/CFS and have lumped me in the too hard basket. I really don't know what to do or where to go, I am feeling lost without clear path forward. Something that is very forging and confronting for me. I am hoping that someone here might be able to point me in the direction of a health professional that can confirm my diagnosis and help me work out a way forward.

    Thank you so much for taking the time to read all of this.

  • @SSV5000 Welcome Dave. Yes you certainly do belong. You sound just like me. Diagnosed in my mid 40’s and by a Neurologist with symptoms similar to yours, although insomnia was and still is my biggest bug bear. I also was super fit doing cycling, gym work, and lots of long walks. Plus working full time. Your diagnosis by a Neurologist is a big bonus as GP’s, etc then have more acceptance of it being CFS. But from there you now need to find acceptance within yourself, become your own researcher and gather up information from YouTube, healthrising.org, etc. and treat the symptoms as they come along. And learn about pacing, which is number 1. And you can always ask any questions on this forum. Stay in touch.

  • Welcome Dave,
    Damn that the symptoms came back.
    But it does mean we get to have you here!
    All power to you working out how to manage CFS, pacing and the neverending symptoms.
    Don't try and push through!

    I can't help with a health professional, but I do hope you find an excellent one.

  • Hi @SSV5000 Pleased to meet you on the forum. I think that everyone here can help as your story seems to be the all too familiar journey that most, if not all of us, have been through or currently going through, diagnosed or not. Reading through the forum posts and getting familiar with how to manage and live with ME/CFS or suffering all the signs of the illness, is a good start. I hope you find it comforting to know that we are only a click away and ready to listen and support you through your journey.. 🤓

  • @SSV5000 welcome 🤗 people here are very supportive!

  • Hi Dave,
    Your story is a distressingly common one. A heck of a lot of CFS sufferers were formally very fit endurance and elite fitness people who crashed out (MS sufferers have a similar profile). This fact alone destroys the absurd notion of us being depressed and lazy malingerers with 'exercise avoidance behaviours' - a maligned belief by which the mental health institutions have held us hostage for 50 years, and still do by continued prescription of harmful Graded Exercise Therapy .

    As a high energy athlete, you no doubt have a good understanding of physiology. That will go a long way in helping you understand and navigate the condition itself.

    For whatever it is, a good rendering is to understand the condition (in my mind) is as a severe 'metabolic injury'. The body's energy system has been pushed too far and burnt out its primary and emergency mechanisms. Cellular respiration becomes greatly impaired and can no longer recycle required amounts of ATP for normal metabolic function.

    The 'crash process' (Post Exertional Malaise PEM) can be thought of as a collapse of ATP/ADP supply. The failure in that recycling system of ADP back to ATP via the aerobic (Kreb/Citric Acid) cycle forces metabolism down the emergency anaerobic routes which are initially one ADP sacrificing a P to another ADP leaving AMP and ATP and an exponential collapse in ADP supply.

    AMP is hard to recycle and releases a lot of inflammatory signals. It's generally urinated out so the entire body which becomes depleted of fundamental molecules required for metabolism. All tissues are then in a perpetual anaerobic state of fermentation metabolism for which I suspect also has underlying injury to its processes. Any kind of forced activity only causes further injury. It can then take days, week, months to rebuild from scratch and recover to a semi-normal function. Even when recovered, the underlying injury still must be kept in mind managed properly

    While active, there is no obvious indication that ATP recycling has failed and that we're burning through ADP. Typically it's masked by adrenaline and we 'feel good' for the period of exertion. It can take days for the crash to present.

    To my experience and understanding, crashes are pan-systemic, in all tissues, muscle, neuronal, glandular, etc. 'Brain fog', neurological disfunction, digestive problems, glandular and muscular fatigue can all be understood as simply because your cells can't produce energy.

    Some systems my crash before others and in different orders depending on the system being exerted. Physical exercise might lead to body collapse but you might be cognitively fine (for a while). Mental excursion might cause Brain Fog/cognative collapse (I call it Cog Lock), while you body still feels energetic. Emotional excursion might lead to endocrinol collapse and highly distressing anxiety attacks. Digestive excursion can cause GI track collapse. And of course, all these systems are intersectional, its just a matter of which system leads the other systems in collapse.

    Enough writing for now. The strongest message I (and many others have) is that you have to take this condition very seriously in order to avoid permanent serious illness (i.e. bed bound, unable to swallow requiring, 24/7 care).

    It will seem highly anti-intuitive that 'taking seriously' means doing less of everything even when you feel capable. Every time you hit PEM, it risks further erosion of that injury and ability to recover. The hardest thing is having people (including yourself) understand that even though you are functioning at their level, unlike them, you are function at the edge of a cliff and you can go over that cliff at any moment.

    Take care, and best wishes in your journey.

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