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It can take a long time to recognise the patterns relating exertion to later symptoms, though; our reality is so different to the common understanding of how exertion impacts bodies. For the first ten years of being sick, I thought it was a problem that just mysteriously disappeared and...

I don't know how connected this sense is to anything "real", but in the last year I've increasingly thought that the subjective experience of exerting is the most reliable indicator of whether an activity will cause PEM for me, separate from how much 'energy' is used. One example is responding...

Same.

I'm very severe, and I still experience my PEM on a delay of about 24 hours, with the peak in symptoms at roughly 48 hours. There are some symptoms that I experience an uptick in immediately after an activity (e.g. muscles in my scalp fasciculate if I raise my head a little bit off the pillow)...

Both times I had covid (2022 and 2024), once my very high fever passed, I felt great for about 3 weeks in terms of mental acuity and creativity and energy before it returned to my normal ME/CFS fogginess. Hope you have no lasting damage from your infection and recovery goes smoothly, @AliceLily.

It matters to me insofar as: 1) More severely ill people may have more of whatever is wrong in their bodies, which may be important for detecting whatever it is 2) Most research up to this point has excluded us, and has found very little 3) researchers invent totally whackadoodle definitions of...

Sorry for writing so much! The more I think about it the more frustrated I am that researchers and medical practitioners often have a different conception of how the severity scale works than I do. It's not (only) symptom burden, in the sense of what symptoms do you get, how bad are those, and...

I have very severe ME/CFS and have been fully bedbound for 3 years, and I would answer that question with "a few days" or "not at all". It only happens in a crash for me now. I used to experience that crushing fatigue most days when I was still working and up and about, and it would be very...

I can see the discussion has somewhat moved past the 'poisoned' label, but as someone who has been poisoned (near fatally - I wound up in a coma in the ICU) I feel like it is the best term for what I experience with alcohol. It is: - sudden onset (or at least sudden realisation that it is...

I get a form of PEM that only affects local muscles - I'm fully bedbound, and if I use my legs a bit for instance to push myself a little way up the bed, or prop them up for about 30 seconds, I can develop shaking in the leg muscles, or a sensation that they are made of concrete, so heavy and...

My experience with alcohol was that when I was mild, I got drunk very, very easily - 1 small beer or bottle of cider would do the trick. I liked that, because nights out were much cheaper for me than for others. At moderate, half a small beer would make me feel like I'd been poisoned, and I'd...

No, it feels equally overwhelming on both sides. However (and I know this is only tangentially related) my tinnitus sometimes presents as only in one ear or worse in one ear, and the same for certain visual disturbances I get (vision going dark when I roll over or raise my arms overhead...

When my ME/CFS was mild, I did catch a few colds (I'd say 1 or 2 a year), along with EBV, and something that caused tonsillitis. Since becoming very severe, I've only had covid (twice) and both times, I also felt much, much healthier than usual in the two weeks after my fever broke. I mean very...

No, I don't get puffiness in the face. I do however experience a strange swelling of the hands and feet, and knees if my legs are locked straight. This feels like blood is pouring into the affected area and is not able to flow back out, like I can feel a pressure building internally and usually...

Thanks, @Hutan. I wish there were more resources online from the perspective of a disabled person, rather than for nurses. Now I know to look in patient groups and forums, rather than to major organisations for guides, but at the beginning, we couldn't find anything on how to place a bedpan, so...

A couple more things: - My vitamin D didn't get low, even after a year with minimal sunlight followed by a full year of darkness with all shades drawn. It's a bit higher now that I can tolerate the window being open all day, but my GP was surprised at how normal it has remained. - Osteoporosis...

I've been fully bedbound for almost 3 years now. This year, I tried a little bit of physiotherapy at home with a visiting therapist who identified reduced mobility in my ankles, hips, and hamstrings, and we initiated a passive stretching program so that if my illness ever improved, contractures...

I also can't vote because I don't accurately know. I didn't realise I was sick at all until I'd been experiencing clear PEM for a decade; I did get sick with suspected EBV immediately before the start of what I can be sure was PEM, but going back 4-5 years before that, I was unusually inactive...

Suicide attempts by other means are unbelievably horrific, which I know from experience. I have devastating PTSD from mine. Even if I knew for sure that I would get better, I would rather pursue MAID than live through extremely severe ME for even a month again - it was simply too much suffering...

I think the bendiness is a bit of a distraction for these patients, like how fatigue isn't really the main problem for a lot of us despite what the name CFS might suggest. Mostly, I hear complaints like "I'm allergic to everything and it's turning into anaphylaxis" or "my rectum is prolapsing...