@passiflora said in New to the forum: Looking forward to comparing some management techniques/life hacks! I love that description - life hack

@crashdummy lucky indeed

Thanks @iris ...

@Daffy_Dave I would just like to add that I know the feels! HRM stuff is super overwhelming - OR IS IT JUST MY BRAIN? it has been on my list for a few years now, and for some reason when I look at the Facebook group for it there is so much reading prep that I get overwhelmed, can't make it through, and don't get very far lol. !

L - has to be 'Lazy' - Deep Purple 1972 - Machine Head Album - Great album! Great Era! Great Band!

@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.

Microdose abilify has by far been the most effective treatment for speeding up my PEM. What used to take me 48 to 72hrs to recover from only takes 12hrs or no PEM from that activity. I still get bad PEM but it takes a lot more activity now to trigger it. Before abilify I would rapidly fatigue from speaking or laughter and would sometimes need to text or whisper during crashes. Strangely and awesomely I can talk normally during crashes now. (Please be aware that therapeutic (normal) dose abilify is associated with serious side effects and hasn't been studied yet.)

@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.

@river said in Housebound BY CFS.: @Siren maybe we need a section of the forum specifically for NOT thinking about illness... Distractions and fun stuff. That's what the Water Cooler area is for, maybe we need a thread there for things like cute animal photos, etc? Good plan

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

Oh no @river Forms are the worst. Especially ones that your quality of life depends on. Sending lots of good wishes. I am heading out now, but I will light a candle when I get back. It might not be of material use, but it's shining flame is my good wishes lending you understanding of those dastardly questions and the excellent power of finding the right words for the answers. (This is presuming you didn't get finished yesterday, or do you actually have super powers?) I am off to celebrate the easing of covid restrictions with a visit to my granddaughters (4 and 6yo) and, if they let me, a nice catch up with my daughter too. Best wishes everyone, do you have something to do today?

Just letting @river know that there's now a "COVID-19 related discussions" category in the non-public discussion area - thanks for the suggestion, and if you have any other thoughts (or anyone else does) please don't hesitate to mention them

My chinese silky rooster , Mr Snowball. Very cute and bossy!

@iris Thankyou ! That was an interesting read and I have bookmarked it to share with the exercise physiologist.

@SandyAtHome I so relate to this!

@Dot It is a relief...

@iris this is in the You+ME app where there is a predefined list of symptoms you can select from and you rate each symptom from 0-4 every day (or on whatever schedule you choose) so I don't think that's an option. You can add your own symptoms, but I'm trying to avoid doing that as much as possible to keep the data clean.

@donnamarie Before I got the flu that began my ME, I had an episode just shy of heat stroke. It seems to be called heat intolerance. It was during a heat wave and I drove with some friends to a store where we thought the air con would be working. It wasn't. Suffice it to say that everything left my body from both ends. Once I got home, they threw me in a cold shower and I finished the vomiting, etc. So it's nothing to play around with, in my opinion. You have to kind of create your own perspiration if you don't perspire normally. I have no problems with cold weather unless my clothes are wet and it is below freezing. People with MS have similar problems with heat intolerance.

@PaulB Thanks for sharing that I haven't heard of Dr Ruscio, but that doesn't necessarily mean much (I'm more up-to-speed with people over here than in the US). However, I would caution against undertaking any treatment based on a podcast (or, usually, any single source) alone. From a very quick glance, the podcast's results were based on one study (not of people with ME/CFS) and Dr Ruscio's personal experience (nice, but far too small a sample size even if he was rigorously scientific in his trialling, which the podcast doesn't suggest he was, and would be very difficult for an individual to do in any event, with placebo effects and other factors muddying the data). I also noticed Dr Ruscio had some less-creditable topics covered on his sight, like the Gupta method, which casts some doubt on his potential reliability as a source of information. It's well worth looking into, but rather than start a conversation on peptides in the "recent media" thread, it might be better with a thread of its own?

@pemdelapem So glad you are able to live in a place that suits your needs. Brr, too cold for me, but I am very similar with humidity. Hooray for merino underwear!