Managing your ME/CFS

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  Guidelines for medical advice / discussion
  • EmergeAustralia  

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  PEM recovery tips
  • river  

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  This is from an online newsletter I get: *Dissecting the Nature of Post-Exertional Malaise The medical journal, Fatigue: Biomedicine, Health & Behavior published a paper by the BHC Research Team about PEM. The paper provides evidence of the differences in PEM triggers, experiences, and recovery based on illness duration. PEM occurs sooner following physical versus cognitive exertion. Participants sick <4 years experience more orthostatic intolerance symptoms during PEM than those sick >10 years. Read the full article here.*
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  Exploring the Gut Microbiome
  • Katt  

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  Over the decades I have tried everything and a plethora of medical tests, some to which I have major episodes and once ended up in another ward, from gastroenterologist to neurologist and under the care of now retired Professor Ray Garrick in the 1990s. My gut continues to decline in function. I have also toured the Centre of Digestive Diseases in Five Dock under Prof Borody and immunologist Prof Clancy. Nothing definitive has been found, a bit of this and that. I refused the RPAH and the elimination diet as back then, the 1990s I had two friends go down that road and come out allergic to everything. I am convinced my gut issue began the day I was born and with the dx of hEDS and MCAD and the ageing process, it is a matter of daily management. Two doctors have suggested a poo transplant which could help some things such as a better microbiome but it does not help valves, arteries, sphincters and ducts that malfunction due to hEDS. A ton of money wasted and more suffering endured than I should have in hindsight. A sick gut is IMHO a driver of ME/CFS.
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  Managing the change of seasons
  • Simone_Em_Aus  

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  I live in the tropics and only use fans not aircon . I really like open doors and windows. Here it is either really hot or hotter the humidity is extremely high so I spend my days in my jocks, I live alone by choice so it makes it easy to jump into a cold shower many times a day after I do small things around the place. I cant see me doing that in a workplace...
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  Re: Managing the change of seasons
  • Bill52  

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  Low-dose naltrexone (LDN) for ME/CFS
  • Daffy_Dave  

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  @dejarik Thank you for checking that. I have just increased from 1.5mg to 3mg, 2 weeks on 3mg then up to 4.5mg. Felt better the first week but more tired this week, will give it a few months and see. As you said, there are so many other factors it is often difficult to tell. The Professor I saw said that 70% of his ME/CFS patients had improvement on it so we will see .
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  Hair Analysis
  • Royal Flash  

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  Dysautonomia corner
  • river  

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  @Loulou , I’m glad you finally crossed paths with a specialist who took the time to listen and then act. The common story so often shared of multiple medical professionals dismissing symptoms is incredibly frustrating. Patient centred care is often unfortunately hard to find.... and when you’re unwell being your own advocate is beyond exhausting
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  Infrared saunas
  • hayden  

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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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  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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  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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  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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