Managing your ME/CFS

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  Guidelines for medical advice / discussion
  • EmergeAustralia  

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  Managing the change of seasons
  • Simone_Em_Aus  

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  @Coggles77 oh interesting - I'm not sure if I have problems with the seasons but I've noticed that most of major deterioriations have occurred over the summer. I wonder how much the heat and fluid loss has contributed to that.
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  GET V HIIT
  • Chris  

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  @Chris said in GET V HIIT: Thanks for your insights. On reflection I think I’m using up my energy envelope with work so there’s nothing left for exercise. I even get PEM after strenuous days at work without any exercise. I’m a bit stuck as I feel I need to work to make ends $ meet and that leaves me with nothing left. I know people say just leave and get another job. Easy to say but hard to do at my age. Thanks. Chris Not easy mate. That's for sure. All the best with it.
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  Low-dose naltrexone (LDN) for ME/CFS
  • Daffy_Dave  

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  My experience was similar to Katt’s. I was on 4mg and then 6mg for a while, and while I think there may have been a little benefit it wasn’t enough of a difference to be worthwhile. I also had side effects when increasing and decreasing.
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  Dysautonomia corner
  • river  

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  @Trae great article, thanks for sharing! I hadn't seen it before. I really hope that something positive comes out of the covid research, for all of us.
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  Overarching approaches to managing ME/CFS
  • PaulB  

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  @Looch No shame in the occasional blooper I find my brain sometimes substitutes what I want to type with another word entirely (often seemingly unrelated!) Great to hear your specialist is familiar with the NCNED's work - and best of luck with your LDN - I very much hope it helps (I have heard of stories of almost-full recovery - they're very rare, but fingers and toes crossed that's what happens with you ) I've popped up an LDN thread here: https://community.emerge.org.au/topic/197/low-dose-naltrexone-ldn-for-me-cfs for all that are interested.
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  PEM recovery tips
  • river  

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  @SandyAtHome Hi Sandyathome, What I have found to lessen the duration of "a crash" I have intermitten rest periods through the day by meditation when I can. I try not to overuse the energy parcels we have for the day as we end up crashing for longer. I've learnt to really listen to my brain & body & give it a rest for half an hour when its needs it. You might try blackmores vitamin B complex supplements for a physical boost or a coffee or tea or cacoa with MCT melrose (liquid coconut oil) (morning only as caffeine effects sleep) from chemist warehouse for a mental boost. Regards Vinney
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  Which heart rate monitor do you use?
  • Simone_Em_Aus  

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  @SandyAtHome you likely won't see any correlation on a day to day basis, at least at first - it's more about patterns over time and in the beginning it can seem like you're making no progress. For me I think it took about 4 months of monitoring before I reached a steady baseline and could see what my vitals were when not in PEM. To get there I had to make some drastic changes to my life which will not be possible for everyone either. It is hard work and unless you have a lot of supports it may be too exhausting. Best of luck!
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  PEM - Post-exertional Malaise - what it is and where it fits with ME/CFS
  • Daffy_Dave  

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  @river I'm relieved to know that word exists. I had to look it up though ..haha... homeostasis, homeostasis... I've been repeating it all day. Very excited that you gave the label to what I was trying to convey ... Reading through some information is a slow going process for me. One, I may not recall the meaning of a word, or I may never have heard it! ...
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  Things to look forward to
  • Daffy_Dave  

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  Admin popping in to say : contacting each other and sharing details is allowable but please keep identifying details out of the public parts of the forum We also don't have any oversight on who anybody is at all beyond seeing a valid email address and a username.. so do please bear that in mind. We don't *think * there's a liability issue for the forum owner if you sort it all out yourselves behind the scenes but be aware that we are flagging there is some potential risk in sharing addresses and real names. School teacher hat off again now! Connection is what we're here for and chat is enabled for exactly this kind of reason
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  Managing sleep dysfunction
  • river  

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  @PaulB Aye, a CPAP machine gave me my reading back, and a tiny bit of energy as well (marginal in an ME/CFS context, but as we all well know, even marginal gains in an ME/CFS context are welcome!) That said, as per your experience, it's not for everyone, and there seems to be more than a few different varieties of sleep apnea, and I definitely wouldn't recommend people jumping to get a CPAP machine (not cheap) speculatively. I'm glad your situation could be resolved without it I'd obviously prefer not to have the machine on (I'm not sure too many people would say sleeping with a mask strapped on and higher pressures in their airways adds to comfort!) but I'm lucky in that for me it doesn't really bother me too much, and the benefits well and truly outweigh the costs.
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  Exploring the Gut Microbiome
  • Katt  

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  @Looch always keen to hear what others have found
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  Aids and other helpful things!
  • river  

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  This might sound kind of, well, obvious, but a few years ago I had a brainwave. Sunglasses. I’ve always been really sensitive to light (comes with being ASD as well) but it got so much worse with ME. Going outside felt like shining a torch in my eyes. I avoided sunglasses for years, because I always felt the arms pressed against my temple and caused headaches. But I invested in some that fit right and it’s been worth it. I no longer have to spend energy just existing when I go outside, I never realised what a difference it made before. Now I never leave the house without them, and have several pairs. @Blubenny I found a triangular cushion at my local cheap shop that appears to be designed for iPads and tablets. It’s super convenient because then I can prop it up at most angles. Obviously nowhere near as fancy as yours, and I can’t make it go upside down, but I can move it with me on the occasions I go to the lounge room as it is super light. Also, I wish you the best of luck with the NDIS. I’ve found they’re not as helpful as I’d hoped, but that could be because they only seem capable of recognising my ASD and not the ME/CFS... which easily negatively affects my life twice as much.
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  Using a heart-rate monitor for pacing
  • Daffy_Dave  

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  @SandyAtHome Sorry to take a little while to reply (ran out of spoons yesterday). I've had a bit of a look online and the HeartMath page raises some red flags for me - very razzle-dazzle, lots of wishy-washy language with a few scientific-sounding terms thrown in, a free introductory session, and similar. I've had to parse through quite a few sites to see if they were scams or not, and I haven't dug deep enough to be sure, but HeartMath's page has a lot more in common with sites that have turned out to be scams to make me comfortable with them. I'd suggest a fair degree of caution and checking them out closely (there were at least a couple of "research papers" supporting them which looked all sorts of sketchy - lots of big words but not actually much in the way of science) if you were going to look into them further.
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  My Daily Routine For CFS.
  • Dencds  

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  High intensity PEMF therapy
  • Christine  

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  @Gerty Yes certainly, however I expect it may take months yet before I get any real improvement.
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  This topic is deleted!
  • Simone_Em_Aus  

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