Newly Diagnosed - Struggling with pacing and crashes.

  • Hi everyone,

    Just stumbled across this site while searching for support groups/networks
    some background - Have been struggling with this condition and all its terribleness since December last year.

    After speaking with some people on Facebook since no doctors or specialists are even worth seeing... I was referred to a clinic in Melbourne to see a doctor who specialized in M.E/CFS. Finally have received a diagnosis of M.E/CFS after my first consultation last week! I'm not sure how to feel at this point but happy to have an answer.

    Back to my point, I am looking for any kind of advice as am in my worst crash I've had so far right now. I have been taking D-Ribose which has been helping with a tiny bit of energy but its not working now.

    Any advise would be great right now 🙂

    Thanks for reading my little rant haha

  • @Dan Hi @Dan ...Welcome to the forum. Nice to meet you.

  • @Dan Welcome Dan. You must be relieved to finally have an answer. That’s a good starting point. I’m going through the PEM’s at the moment, so I’ll have to make this short. ☹️ Stay on board.

  • Community Moderator

    Hi @Dan, welcome to the forum. Definitely found the right audience for any rants about struggles with pacing and crashes and working through the feelings attached to a diagnosis.

  • Hi Dan, I am so glad you found us.
    Big commiserations on your worst crash. I have found that recovering from crashes, and avoiding future crashes, is the hardest skill of all to learn.
    It varies person to person and for every person it varies from time to time. The optimistic thing is that you do learn as you go along and get better and better at it.

    Have you come across 'spoon theory' yet?

    I am presuming that since you have mentioned pacing you have found resources about it?

    I guess when we get down to it, we have to pace ourselves out of a crash. Rest rest rest, but still remember to drink plenty of water. Eat as well as you can. Give yourself permission to lie on the couch and catch up on your favourite TV. Try and watch something that makes you laugh, and call it your exercise for the day.

    When we crash our 'energy envelope' has shrunk down to almost nothing, so rest rest rest. I get so bad I can't even concentrate on TV (sound and vision is too much!), sometimes a good radio show works.

    Also, take the opportunity to think back and see what you have done in the last few days that might have been overdoing it physically (I am like 'all I did was some shopping... oh yes I had to go back across the store because I forgot something, and oh dear yes I did move that bit of furniture on the same day, and then I was exhausted but I pushed through to cook the family meal...'). It is the only way we learn.

    Good luck. I hope you can rest your way out of this crash relatively easily.

  • @Glimmer Grrr, I can’t remember how to do a link. I have recently come across Gary Burgess UK journalist who has ME/CFS, on YouTube. (He’s also had a recent diagnosis of terminal lung cancer). But I’ve found his blogs easy to watch, especially the one on how he does pacing. Explains it well so worth a watch.

  • And now I’ve realised I sent it to myself 😵💫😳🤪

  • @Dan welcome 🤗 As someone recently diagnosed myself, I understand the mixed feelings of having answers!

    The best thing you can do right now is rest, and if you are up to it, research. Pacing is proving to be a pretty tricky skill to pin down, and it is affected by responsibilities like work etc. too.

    Wishing you all the best. Stay in touch 😊

  • Wow Dan, that's a lightning speed diagnosis your very fortunate to have access to a ME/CFS specialist. I am somewhere in between 2.5/3 years now and hopefully nearing a diagnosis . Surely they are running out of hoops for me to jump through. I unfortunately spent the first couple of years with a uninformed doctor. I couldn't help but feel she has been trying to treat a broken arm whilst I kept presenting with the same broken leg. Needless to say I have been forced to undergo every possible exclusionary test available and have found a supporting doctor and now continue with her exacerbating specialist referrals. The process makes it very hard to stay at my baseline as it is enormously consuming. Well done Dan, happy for you...

  • Dan, as our bodies energy regulator is out of order it's disproportionately replenishing used energy so any attempt to hasten this natural process artificially is counter productive. Unfortunately your energy regulator is only working on trickle charge and you have to take time out and let it do it's thing...Find your baseline, you wont be able to go far over it but don't let yourself get too far under it and remember your only on trickle charge...My baseline is 50% if I lay down for 4 days I can get it to 60% which allows me to use 10% outside the house. If I use 20 % and drop back to 40 % I have detrimentally overspent my energy ...That's the commonly referred to energy envelope we are all familiar with...

  • @Dot Thankyou Dot! That’s the one. Good that you have a functioning brain. 👍

  • @Glimmer You're welcome. (An occasionally functioning brain 😄 )

  • Thanks everyone for your responses, my specialist has just prescribed be to begin taking low dose Naltroxone .5mg to see if it will assist me in any way with the medication I'm already taking.

    Fingers crossed it helps! 🙂

    also are any of you working full time? I am currently struggling with full time work and unsure how to explain this to my employer

  • @Dan I am currently working and recently approached my bosses about reducing my hours.

    I was nervous but just explained that I have been having some health issues which make it difficult for me to work full time. I told them briefly about my diagnosis and gave them some printed information about me/cfs with links to Emerge and other websites etc.

    As my career isn’t conducive to working from home or to taking regular rest breaks, I asked if they would consider allowing me to go part time and they agreed.

    I hope this helps you. All they can say is no 🤷

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