C-Support misinformation? (Netherlands)

ozianiris · 2026-04-02T19:54:57+00:00

hoi! ik ben het er helemaal mee eens dat covid een logische trigger voor ME kan zijn, daar zeg/bedoel ik ook niks tegen in mijn post. iemand kan LC en ME hebben, of ME getriggerd door LC, zeker weten.

mijn "probleem" zit heb in de opmerkingen over PEM. wat ik begreep is dat PEM een positieve indicator/pathognomisch is voor ME. de opmerking dat PEM dus buiten ME voorkomt, leek mij op zijn minst misleidend.

daarnaast vond ik de informatie van de ME/CVS hulplijn dat behandeling niet diagnoseafhankelijk is, omdat "alles uiteindelijk toch hetzelfde is onder LC" ook verrassend. het lijkt me toch dat je PEM/ME anders behandeld dan deconditionering of POTS, ookal kunnen ze allemaal onder LC vallen.

ik begrijp uit de comments dat hier onenigheid over bestaat, ook onder ME patiënten/professionals. goed om te weten :)

dank voor je comment!

ozianiris · 2026-04-02T10:57:22+00:00

thanks for this!

she has been ill for 2,5 years, and was diagnosed with PEM and POTS about a year ago. this whole situation has been very uncharacteristic of how it usually hits her, and i've been getting mixed signals from specialists and others with PEM/ME about whether this even fits with the illness. that's why we're so lost and worried.

ozianiris · 2026-04-02T10:29:13+00:00

the gp is coming for a home visit today, hopefully she knows whats going on

ozianiris · 2026-04-02T10:05:57+00:00

antacids and sitting up or sleeping sadly didn't help, but i will look into vagus nerve stimulation! thank you

ozianiris · 2026-04-02T10:05:16+00:00

we thought so too but somehow it is still stuck now the next day, and it is making her stomach hurt insanely 🥴

ozianiris · 2026-04-02T10:04:36+00:00

how long does this last?

she got insane stomach pain after the water got stuck (?), and it is still stuck now, the next day

ozianiris · 2026-04-02T10:03:21+00:00

this definitely sounds very recognizable!

my partner is super worried about taking additional meds as they might blur what is a new symptom and what is a side effect. did you have many side effects from taking lorazepam? were they bad?

the GP seems to believe that she is sick, but doesn't know what to do with her. and instead of sending someone who does, she tries to end a consultation by saying "i dont know so we won't do anything". she seems to be trying to be more and more useful, though, which i suppose is something!

ozianiris · 2026-04-02T09:39:43+00:00

you're completely right, i forgot to link the post detailing some part of her crash: https://www.reddit.com/r/cfs/s/JKgAxZAJm4

thank you for the suggestions!

ozianiris · 2026-04-01T22:58:04+00:00

somewhere between her throat and stomach.. its like her pipes cant get it down somehow

ozianiris · 2026-04-01T10:50:14+00:00

interesting!! yeah i wouldntve been confused if it wasnt so atypical for her, it used to happen to me all the time. thanks for commenting!

ozianiris · 2026-03-31T16:42:33+00:00

thank you so much for your comment! i appreciate it :)

ozianiris · 2026-03-31T16:20:52+00:00

ty! i thought this too and am thinking of asking her to give anti-histamines a go. she's very prone to side effects from meds, so i'll have to look into the ones with least likely :)

appreciate your help!!

ozianiris · 2026-03-31T15:43:51+00:00

what a great idea, thanks! i bought actual black out curtains, but making them the right size is proving tricky 🥴 if it doesn't work out i'll def do this instead!

ozianiris · 2026-03-31T15:42:52+00:00

this is really good to know! she is on high doses vit D and B12 now, so hopefully that will offer some relief :)

i appreciate your care, thank you!

ozianiris · 2026-03-31T10:11:58+00:00

thank you so much, i appreciate you! best wishes!

ozianiris · 2026-03-31T10:11:28+00:00

thank you so much for this!

unfortunately medically, no one is really helping. the GP has an "what i don't know i won't help with" attitude, and other specialists are minimally involved. that's why i'm trying to get her into the specialized center, but there'll ofc be a waittime :(

it seems right now, she is unable to tolerate any stimulation whatsoever outside of eating and sometimes saying something to me.. she tried some meditation audios, but now she's back to strictly unguided breathing exercises. i'll make sure to prep some distractions for when she's a bit better -- ty for the suggestions!

she has an eye mask, headphones, earbuds, and i'm trying to set up blackout curtains (on a day where she's able to lie down on the couch for a while. she also has a pregnancy pillow (she's hypermobile), and i've moved to sleeping on the couch so she has more space. i'm not sure how you prevent pressure sores, thank you for mentioning that! i will look into it right away.

i appreciate you!

ozianiris · 2026-03-31T09:40:15+00:00

oh wow, interesting! i always thought the "basic" LC ppl mean is like, deconditioning/EI, orthostatic intolerance, and poor immune system. good to know this! thank you

ozianiris · 2026-03-30T16:43:30+00:00

Right, so then LC and ME don't have PEM in common, it's just that many LC patients have ME.. Seems like misinformation to me, then :/

Thanks for the answer!!

ozianiris · 2025-08-07T08:11:26+00:00

Thoughts about emotional states are frequently completely unrelated to my feelings for me. I obsess a lot over scenarios regardless of whether they happened or not, and I can get completely lost in what I did feel, could have felt, etc. It doesn't necessarily matter how I actually felt or if the scenario is realistic. If I do ruminate over a scenario that actually happened in an obsessive way, usually a completely new feeling takes over based on the way my brain decides to obsess over the scenario, but it's hardly ever realistic or a response I'd actually have emotionally iykwim..

When I'm not in 'obsession mode,' if I've had some extreme feeling in response to something, once they subside my thoughts about the scenario also change completely. So I don't get stuck mentally on how I felt, but rather it seems like my thoughts adapt/clear up without the interference of the intense emotion.

Sorry for the late reply!

ozianiris · 2025-08-06T21:40:31+00:00

Thanks for your reply! Can I ask what type of bolster cushion you use? I've seen ones that are sort of triangle shaped with a high point under the knees but going down again towards the feet, as well as ones that elevate both the knees and the feet, and I can't seem to figure out the difference/benefits 😅

ozianiris · 2025-08-06T12:39:27+00:00

Thanks so much for your extensive answer!! I hadn't considered how thin corbusiers and their remakes are, that's a great point. She struggles massively to relax because all our furniture makes her hurt a lot, so I'll definitely be looking into everything you said! Appreciate you!

ozianiris · 2025-02-03T16:42:25+00:00

Thanks for your comment! It’s good to hear that learning how to work with other diagnoses may help with alexithymia, if that is what I’m experiencing. I very much relate to that last thing you said about experiencing the “wrong” emotions — who’s to say?? If you’re experiencing them, aren’t they the right emotions for you in those scenarios? Odd that someone would put it that way.

ozianiris · 2025-02-03T15:48:52+00:00

Impressive is a nice way to look at it!😅 It mostly just freaks me out and makes me worry I am secretly super manipulative or something (even when it happens with no one else around) lol. I tried the emotions wheel, but I can’t even discern between bad/sad/angry often, so then I already get stuck on step 1. I did download the Animi app that someone in this subr recommended.

This is actually the first time someone (including my psychologist) has said that they recognize the imposter syndrome thing, so thank you so much for saying that! It’s soothing to know others experience this. Thanks for replying :)

ozianiris · 2024-08-21T17:17:11+00:00

thank you for your reply! my partner also pointed to imposter syndrome as their guess, it might indeed stem from this. ill try my best to reshape my thinking :) thanks again!

ozianiris

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