Hello from The Otways



  • Hello everyone, hope you are all as well as possible under the circumstances, I'm Laura and I live in The Otways, SW Vic, and have been diagnosed MECFS (2017 but I suspect it may have been much earlier onset) and recently "Ehlers Danlos-like Hypermobility Syndrome" (aka Hypermobility Spectrum Disorder) with secondary Orthostatic Intolerance/POTS (2020, diagnosed at Austin Hospital Blood Pressure Disorder Clinic, Melb). I've got chilling out down to a fine art after several years of more severe MECFS symptoms, which has slowly helped give me back a bit more of my life, as well as getting my OI/POTS more under control with medication (yay). I've lived in The Otways for 25 years and had an energetic active lifestyle raising my kids and riding horses on long 20-30km weekend trail rides until I was suddenly unable to muster the energy after a severe respiritory illness that I never really recovered from in 2017. Just glad that my kids were older teens when this happened, able to look after themselves. I miss my old active self and have spent some years bed/couch bound, and slowly got to a few hours upright daily, over the last couple of years. Getting onto Midodrine in 2020 has really helped for my OI/POTS and I've noticed I have less PEM and less brain fog than before I started taking it, if that helps anyone with Hypermobility/EDS and/or Orthostatic Intolerance/POTS, with MECFS. Midodrine can be prescribed & dispensed at Austin Hospital, it's also on the PBS list there so if you have a health care card it's $6.60 per pack. Rambling a bit here but just wanted to pop in my things that help me in case it helps someone else! Before I forget!! Everyone who has MECFS should be assessed for OI/POTS in my opinion! I read about Austin Hospital Blood Pressure Disorder Clinic and made a beeline for it (took 2 long years from referral!) and getting diagnosed with Hypermobility & OI explained so many things that I never got answers over the years! (eg why my shoulders were hanging 5mm out of joint, why I couldnt pick up my yongest child without pain, why I'd had rapid births, why my joints all click crunch and pop, and so on!) MECFS is the crueller condition, seems to fluctuate and trick you into feeling better then crash you down hard. Hope to chat with you soon, I may not reply sometimes as I can only do a certain amount of computer time each day. Thanks for having me here, and glad to find an Australian MECFS community!



  • @JustChilling Glad to meet you on the forum ...


  • Community Moderator

    Welcome (formally 🙂 ) to the forum @JustChilling - glad to hear you're able to get some relief from the POTS, although appreciate even with that treated ME/CFS is plenty challenging. I hope you enjoy being part of the community - Dot's "chat" threads are a great place to 'hang out' - https://community.emerge.org.au/topic/466/september-chat/68 - you don't need to read the whole thread, you can just jump in at the bottom 🙂



  • @JustChilling Welcome 💐

    I have orthostatic intolerance and my daughter is hypermobile, I think I am slightly hypermobile (just enough to cause trouble 😞 ) (But so glad my daughter hasn't developed ME/CFS)

    I agree, it is such a nasty tricky illness the way it fluctuates so the goal posts keep changing. And every time we get a symptom under control... a new one pops up!

    Isn't it hard to give up all those wonderful activities, but hooray for managing your symptoms so well! Hopefully those few hours of uprightness might grow to even longer.

    Great to have you here.



  • @crashdummy thanks, you too.



  • @Daffy_Dave Thanks, yes a bit of a double whammy with POTS & ME, some days are better than others lol. I'm so glad to have POTS more under control, the pandemic got in the way of specialist reviewing my medication dosage for POTS and I only got onto the correct (higher) dose quite recently, it's so good not to live in a world of dizziness any more. I'll have a look at Dot's thread cheers for that. My big hope is the Prof Ron Davies and the good scientists he works with (including our Prof Armstrong in Melb!) come up with medication for ME/CFS. I've been following their progress for a few years now. Fingers crossed hey.



  • @Dot thanks so much, yes it seems to run in families. Specialist said my kids all "almost certainly" have hypermobility too based on various things I told him about (the most obvious is my youngest, who when little could put both his ankles behind his neck at the same time - I used to call him "rubber boy" haha!)
    It took so long to be diagnosed with OI that I still am only now looking back and realising that I had symptoms that I couldn't explain and just sort of adapted to/explained away without knowing what it really was. It's annoying trying to find the cause of fluctuations (mixed in with ME fluctuations!) and I've lately had to try to accept that I cannot always find the trigger!
    This week has been difficult with a big low pressure weather system making me feel worse, we had 'feels like' -10.2C (yes that's minus!) on Monday arvo in The Otways, brrr!



  • @JustChilling Brrr! Straight from the antarctic! I hope you are keeping snug this morning!
    So glad you are out of your world of dizziness. 🤞 it is the right dose now.

    yes hooray that better and better research is being done.



  • @Dot said in Hello from The Otways:

    @JustChilling Welcome 💐

    I have orthostatic intolerance and my daughter is hypermobile, I think I am slightly hypermobile (just enough to cause trouble 😞 ) (But so glad my daughter hasn't developed ME/CFS)

    I agree, it is such a nasty tricky illness the way it fluctuates so the goal posts keep changing. And every time we get a symptom under control... a new one pops up!

    Isn't it hard to give up all those wonderful activities, but hooray for managing your symptoms so well! Hopefully those few hours of uprightness might grow to even longer.

    Great to have you here.



  • @JustChilling said in Hello from The Otways:

    Midodrine

    Hello! I am from the 'Surf Coast Hinterland'... haha, fancy word for Winchelsea. I am soooo similar to you, but my kids are young. I am an ex horse rider, have HSD / hEDS, OI, not POTS, and I believe ME/CFS is actually main cause of my fatigue, fog etc symptoms. Glad to find this community and some locals!


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