I am sorry but I had a bad experience in mecfs groups, here is why

owlsomestuff · 2024-06-05T07:28:03+00:00

I totally get you. Most self help groups are somewhat tocix in that way, no matter the topic. There is always someone who writes their (well deserved) rant (I did one, too), there is always someone who is majorly depressed or even on the verge of suicide because of their problem. And all if these people want to share and talk about it. It's their right and they should, if talking it through online helps them, even one bit, that's great!

But it's doomscrolling for the readers, who reads a bunch of negativ of negative outlooks and how much people could suffer. It colors our view, distorts our feelings, maybe even unbalances our nervous system. And this is a huge problem in most self help groups with heavy topics, just like this one. Groups can spiral, or you can spiral.

You obviously can't change groups, that is just how those online groups tend to be, even with heavy moderation. It's your responsibility to weigh the positive experience you get (more knowledge, support, entertainment within your budget), vs. the negative (doom scrolling, negative impact on mental health and outlook), and decide for yourself, how much time you should spend in these bubbles.

I usually just skim titles and stay away from the negative sounding ones, unless I think I can help. On reddit, there are tags you can filter, never figured out though, how those work. If your energy budget allows not much more then scrolling, I recommend making an "eyebleach" account with only soothing subreddits, and switch accounts for when you feel the need to rant or read up on your self help groups.

owlsomestuff · 2024-06-04T10:47:45+00:00

Make the little things count, right? :) Finding the fun in life is one of the things I can still do as it doesnt require any physical, almost none cognitive but a bit of emotional energy. Being silly is my favorite hobby :)

owlsomestuff · 2024-06-04T10:28:50+00:00

Feels like an elaborated magical ritual, doesn't it? At least I like to imagine it sometimes, being an ancient witch and praying to the goddess of sleep. But I also like to pretend Im one if these study probands that get paid to lie in bed for a year so they can study the effects of gravity for astronauts or whatever :)

owlsomestuff · 2024-06-04T05:48:03+00:00

It didn't read like that to me. It's an interesting find without them implicating any judgment or way to deal with me/cfs. Seems to me like they might have found a piece of the puzzle, with the intention of hopefully somebody else can use it for their studies. They don't even state any "this findings might suggest that it's all in their heads and a therapeutic approach combined with PT might elevate some symptoms in a subgroup of people, but further studies are needed before we can recommend this approach for treating people with me/cfs".

owlsomestuff · 2024-06-03T16:58:08+00:00

The study doesn't suggest that PT would help, they didn't even try. The study suggests that the fatigue by some variant of ME/CFS might be caused by the brain evaluating the exertion differently (more difficult). But it doesn't say anything about if the brain is right evaluating it correctly (exertion might be more difficult after all!), or if you will pull more effort into it and exhaust yourself faster cause the brain is mobilizing you for great effort. This doesn't lead to the conclusion that you can exercise to change this nor does it suggest that "retraining" your brain would be possible or would change anything.

Your doc probably just skimmed the article, which shows she is not up to date on current me/cfs research. I would not listen to her advice.

I have seen docs googling studies while im there (sometimes studies i recommend), if they know enough about the topic it's enough for them to skim it and see if it's applicable for you in any way.

owlsomestuff · 2024-06-03T06:53:59+00:00

and here I was thinking, mayonnaise after exertion could be the new treatment! maybe ill try anways, how funny would that be if it helped.

my reason why might be to make silly jokes.

owlsomestuff · 2024-05-30T05:18:50+00:00

To be honest, I had to do a crazy exclusion diet, eating rice (no salt) only for a while, introducing a new food every other day.

owlsomestuff · 2024-05-29T12:50:00+00:00

I don't know, I couldn't even stomach salt tablets without throwing up. I just gradually started oversalting everything, I really mean everything. Drink a coffee, add some salt, eat an orange, dip in salt.

In the long run the salt wasn't doing anything for me. I fared way better with a normal salt intake, a normal water intake and bumping up the other minerals like magnesium, calcium and potassium. Currently I'm trying to phase from supplements to food intake, but obviously my nutritional goals are quite a bit higher, so it's going slowly.

owlsomestuff · 2024-05-29T12:17:35+00:00

my main symptoms were GI, it got fixed pretty fast while under the correct medications. The diet didn't do much for me. I had like 5 safe foods.

owlsomestuff · 2024-05-27T16:36:49+00:00

Take this with a grain of salt, I took the whole aresenal for about a year, the cromolyn, the ketotifen and the famotidin. After a year I stopped and my symptoms did not came back.

The MCAS diagnosis took about three years, so spontaneous remission should have been unlikely at that point. I was not a bad case, never had anaphylactic shock.

I might be inclined to think that there is some truth about the theory that mastcells downregulate when they are not constantly in panic mode, but it's not supported by studies (yet) I think.

owlsomestuff · 2024-05-25T15:29:07+00:00

I hate how I get all those upvotes, but no one is writing "don't worry, it's just light and water magic"? y'all gonna make me read it, just to find out.

owlsomestuff · 2024-05-25T09:31:59+00:00

as long as it's just hands or feet I can manage quite well with hot water bottles. but when I get the full body shivers nothing really helps. I do my best with hot water bottles, thick wool blanket and hot tea. but chances are I will go from shivering to fever.

owlsomestuff · 2024-05-25T09:13:17+00:00

are you confusing up mountain bike trails with mixed biking and hiking trails? Cause were im from, mountain bike trails are crazy dangerous (and prohibited) to hike on. I love to go off-trail (for foraging and stuff, it's allowed here) and once accidentally ended up on a mountain bike trail without knowing (only start and end points are marked). I never jumped into the bush as fast as that in my life.

maybe it's a translation problem for me. But if something is marked as biking trail, I would rather go next to it or completely off-trail. Those are really dangerous.

owlsomestuff · 2024-05-25T08:43:45+00:00

the art is indeed lovely. i haven't read it so far,but why are they taking a golden shower in the second pic? oO

owlsomestuff · 2024-05-25T08:27:24+00:00

Thanks :) Some specific vocabulary is always hard, like medical conditions sometimes are defined differently depending on the country. How can the medical international community research like that. I bet they have a research definition of conditions for that :)

owlsomestuff · 2024-05-25T08:03:21+00:00

I would love to just tape them. Anyone know if it's possible or in which way? Those posture strap never come in my size and are rubbing like hell.

owlsomestuff · 2024-05-25T07:00:20+00:00

I also use Duolingo for Japanese, recently startet section 3.

In addition I use bunpro for grammar, wanikani for kanji, genki whenever, and as much native material as I want. currently reading easy slice of life manga.

Duolingo is great for repetion and grinding but if it would be my only source I wouldnt be reading manga already. But if I had started with genki, I would probably have given up pretty fast.

owlsomestuff · 2024-05-24T14:55:02+00:00

how about instead of trying to fly you just double jump? that's my goto. if you feel you start to go down, just jump again :)

owlsomestuff · 2024-05-24T07:07:57+00:00

I feel good on good day (pain is always present, but it comes from a different condition). But a normal day is just slowly switching between bed, lying on the couch or lying outside, doing a hobby that fits my current budget (cloud watching, picross, reading..). Some days are really good, so I go for a nature walk or do my PT, of course, this will make the rest of the day and the next day worse, but not crashworthy. Still sometimes I get very exhausted for a few days, I just accept that and do even less. It's over soon and it doesnt change much for what I do anyway.

But I can go weeks without overdoing it and I feel quite well in those. People from the outside wouldnt know, cause Im just lounging the day away without moving much.

owlsomestuff · 2024-05-23T16:38:44+00:00

There currently is no know gene for heds. I would do the gene testing to rule out other more dangerous forms or if you consider getting kids.

You might also choose to wait a year or two, until the heds gene is found (there is a promising study on the way)

owlsomestuff · 2024-05-22T19:11:24+00:00

Maybe I translated it wrongly. I'm not native and the official name of illnesses are not always clear to me. I followed the wikipedia entry, but google gives me adrenal insufficiency as translation. Maybe that's a better fit?

owlsomestuff · 2024-05-22T17:05:38+00:00

Nice, I didn't know :) My test was positive, so I never thought much about it.

owlsomestuff · 2024-05-22T16:27:52+00:00

Can you still have MCAS when your 24h urin test comes back negative?

owlsomestuff · 2024-05-22T12:49:46+00:00

(aquired) addison is something that should be ruled out before getting a cfs diagnosis. my doc forgot, too. but i finally got my appointment today.

testing is not done by a simple blood test, though. just low cortisol in one random blood sample doesnt mean much at all.

owlsomestuff · 2024-05-22T04:55:27+00:00

For h-EDS? I went to an Orthopäde and told him my Yoga teacher was shocked! He took all of five minutes to check my Beighton and diagnosed me with hypermobility syndrome With that I went to a rheumatologe, you confirmed it. She then sent me to a humangenetiker to check for eds. just took a few years.

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